ALS Canada: 2012 Manual For People Living With ALS

ALS SOCIETY OF CANADA
1(800)267-4257
.als.ca
alscanada@als.ca
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2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 1
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3 - General Description
3 - Types of ALS
4 - Symptoms, Signs and Diagnosis
5 - What Causes ALS?
9 - Is ALS Treatable?
1: +HA( I' A'? '20A6<;
2: C#$I"G +I(H A' '20A6<;
11 - The ALS Diagnosis: Now What?
11 - Coping Strategies for the Person with ALS
12 - Meeting the Challenge
13 - Tools for Staying on Track
14 - Coping Strategies for Family Members
15 - Helping Children to Cope
3: GE((I"G (# K"#+
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17 - ALS Society of Canada
17 - Providing Information
17 - Supporting Research
17 - Providing Support
18 - Contacting the ALS Society
4: A' DI'EA'E
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19 -Your Healthcare Team
23 - Overview of ALS Management Issues
23 - Mouth and Throat Problems
24 - Symptoms that Affect Daily Living
25 - Mobility
27 - Sexual Concerns
27 - Complementary and Alternative
Healthcare and Natural Health Products
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30 - Exercise and ALS
31 - Mobility Aids
35 - Travel Tips
A30?C8=6 C> *F0;;>F8=6 'A>1;4>3 %DCA8C8>=
37 - The Mechanics of Swallowing
38 - Adapting How and What You Eat
40 - Maintaining Good Nutrition
41 - Tube Feeding
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45 - Changes in Speech
46 - Augmentative and Alternative
........Communication (AAC) Strategies
47- No-Tech Strategies
47- Low-Tech Strategies
48- High-Tech Strategies
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51 - The Mechanics of Breathing
53 - Monitoring Breathing Function
54 - Complications of Respiratory Infection
55 - Staying Healthy: Preventive Airway
Management Strategies
6C
56 - Respiratory Failure: Advanced Breathing
Management Options
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60 - Oral Health Issues
61 - Oral Health Devices
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63 - Why It's Important to Talk about It
63 - Approaching the Concept of End-of-Life
64 - Advance Planning
67 - Leaving a Legacy
'20A6<;
68 - Before Purchasing Equipment
68 - Types of Equipment
68 - Assistive Tools for Activities of
Daily Living (ADL)
69 - Body Supports
70 - Walking Aids
70 - Wheelchairs
71 - Lifts and Stair Glides
71 - Bathroom Equipment
72 - Beds and Mattresses
72 - Augmentative and Alternative
Communication (AAC) Equipment
72 - Tube Feeding Equipment
73 - Home Modifications
73- Service Dogs
5: A''I'(I*E E%)I$!E"(
6: FI"A"CIA &
EGA I'')E'
'20A6<;
74 - Living with ALS Can Be Expensive
74 - Employment and ALS
74 - Insurance Issues
77 - Pension Plans
78 - Tax Issues
79 - Future Planning Documents
80 - Health Care Decision Making
80 - Living Wills and Advance Care Plan
81 - Estate Plans
82 - Last Will and Testament
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84 - ALS Medical Textbooks
84 - ALS Management Guides and Coping
with Chronic Illness
86 - Cook Books
86 - Caregiver Books and Guides
88 - End-of-Life Books and Guides
90 - Bereavement Books
92 - Personal ALS Stories
94 - Fiction
94 - Books for and about Children
-834>B
96 - Videos/DVDs
=C4A=4C )4B>DA24B
98 - ALS Specific
99 - Assistive Technology
99 - Caregiver Sites
100 - General Health Resources
100 - Government Resources
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1(800)267-4257
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Heather Allen, MSW, RSW
Social Worker
ALS Clinic/Neuromuscular Care Stream
The Ottawa Hospital Rehabilitation Centre
Ottawa, ON
Kathleen Beggs, RD
Dietitian, ALS Team
GF Strong ALS Centre
Vancouver, BC
Stuart Cleary, PhD, CCC-SLP, R-SLP
Associate Professor
Board Recognized Specialist in Swallowing and
Swallowing Disorders (BRS-S)
Department of Speech Pathology and Audiology
Faculty of Rehabilitation Medicine
Adjunct Associate Professor (Neurology)
Faculty of Medicine and Dentistry
University of Alberta
Edmonton Alberta Canada
Shelley Dibranon, B.Sc., RD
Clinical Dietitian
Ottawa, ON
Heather D. Durham, PhD
Professor
Department of Neurology and Neurosurgery
Montreal Neurological Institute
McGill University
Montreal, QC
Karen Findlater, PT
Neuromuscular Clinic
University Hospital/London Health Sciences Centre
London, ON
Nancy Forseth, BSc, OT
Occupational Therapist
Vancouver, BC
Karen Hall, MScOT, OT Reg. (Ont.)
Assistive Technology Clinic
Toronto, ON
Jennifer Libramonte, CFP
Financial Planning Advisor
Toronto, ON
Douglas A. McKim, MD, FRCPC, FCCP, ABSM
Medical Director, Respiratory Rehabilitation Services
Associate Professor, Department of Medicine
University of Ottawa
Ottawa, ON
Leann Merla, MSc, OT Reg (Ont)
Occupational Therapy Clinical Specialist
London, ON
Gwyneth Moe, BSc, PT
Physiotherapist
Vancouver, BC
Lorraine Papineau, PT
Physiotherapist
Ottawa, ON
Brigitte Poirier, M.P.O., RSLP
Speech-Language Pathologist
Vancouver, BC
Nicole Shuckett, RD
Consulting Dietitian
Toronto, ON
Amy Shuster, MSW
Vancouver, BC
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Denise Burdon, RDH
York Region Dental Hygienists Society
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Ottawa, ON
Alayne MacDonald, MSc, S-LP(C)
Speech-Language Pathologist
Nova Scotia Hearing and Speech Centres
Halifax, NS
Ruth McFeat
Past ALS Caregiver
London, ON
Mikelle Meaden, MSW
London, ON
Colleen O'Connell, MD, FRCPC
Stan Cassidy Centre for Rehabilitation
Fredericton, NB
Patricia Ordynec
Manager-North Region
ALS Society of Alberta
Edmonton, AB
Ann Rowe, RN
London, ON
Nigel Van Loan
Past ALS Caregiver
Ottawa, ON
Patricia Van Loan, MSW, MScEd
Person with ALS
Ottawa, ON
William Weir
Person with ALS
Hamilton, ON
Kathleen Beggs, RD
Dietitian, ALS Team
Vancouver Coastal ALS Centre
Vancouver, BC
Denise Burdon, RDH
York Region Dental Hygienists Society
Markham, ON
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Markham, ON
Pat Carey, RN
Edmonton, AB
Elaine Cawadias, RD
Clinical Dietitian
The Rehabilitation Centre
Ottawa, ON
Marcia Choi, MSc, SLP(C)
Registered Speech Language Pathologist
Vancouver Coastal ALS Centre
Vancouver, BC
Monique L. D'Amour, MD
Medical Director
CHUM - Hpital Saint-Luc
Clinique SLA
Montral, Qubec
Sue Decker, MSc, R-SLP
Speech Language Pathologist-North Region
Edmonton, AB
Denise Figlewicz, PhD
Neuroscientist (past VP, Research ALS Canada)
London, ON
Marjorie L. Griffin, MSW
Vancouver, BC
Janice Hagel, OT
Calgary, AB
Wendy S. W. Johnston, MD, FRCPC
Associate Professor and Co-Director,
Neuromuscular/ALS Program
University of Alberta/Walter Mackenzie Health
Sciences Centre
Edmonton, AB
Carole LeBlanc RRCP (RRT)
Professional Practice Leader
Respiratory Therapy
Subsidiary Corporation of The Ottawa Hospital
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Elaine Cawadias, RD
Clinical Dietitian
Ottawa, ON
Monique L. D'Amour, MD
Medical Director
CHUM - Hpital Saint-Luc
Clinique SLA
Montral, Qubec
Karen Findlater, PT
London, ON
Wendy S. W. Johnston, MD, FRCPC
Associate Professor and Co-Director,
Neuromuscular/ALS Program
University of Alberta/Walter Mackenzie Health
Sciences Centre
Edmonton, AB
Douglas A. McKim, MD, FRCPC, FCCP, ABSM
Medical Director, Respiratory Rehabilitation Services
Associate Professor, Department of Medicine
University of Ottawa
Ottawa, ON
Leann Merla, OT
London, ON
Colleen O'Connell, MD, FRCPC
Stan Cassidy Centre for Rehabilitation
Fredericton, NB
Nigel Van Loan
Past ALS Caregiver
Ottawa, ON
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+
he purpose of this Manual is to provide
information and helpful hints to individuals
and families recently diagnosed and living with
ALS. Readers are encouraged to use this manual as a
tool to keep notes, organize personal information, and
stimulate discussion between themselves, their family
members, and their healthcare providers.
See HOW TO USE THE MANUAL section.
The content of the Manual represents an overview of
ALS, coping tips and tools, where to go for help and
support, and issues people diagnosed with ALS should
begin thinking about early, such as assistive equipment
that might be needed and legal and financial concerns
for the future. In the area of clinical disease
management, there is information about the healthcare
professionals who make up the ALS care team, an
overview of symptoms and functional changes
associated with ALS, and specific information on a
variety of disease management topics such as mobility,
breathing, nutrition, oral care, communication, and
end-of-life advance care planning.
Information about some aspects of ALS changes from
time to time and understandably people want to be
kept up-to-date with the latest information. However,
sometimes news, particularly in the area of research
and clinical trials, changes faster than the Society can
update the manuals. To stay informed, the Society web
site (www.als.ca), local ALS Societies, and ALS clinical
specialists should be checked with from time to time
for new information.
Updated editions of the Manual will be published
periodically, so readers with suggestions for updating
or changing content, or altering the format to be as
user-friendly as possible, are asked to share their
insights by sending an e-mail to alscanada@als.ca.
It is our intent that reading this Manual will contribute
to one's strength and encouragement. Strength from
better understanding the challenges to be faced and
encouragement from knowing that many others with
ALS have found that even as the disease take its
physical toll, their spirits have remained strong,
surrounded by the love of their families and those who
care for them.
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revious editions of this Manual have been
used as a source of information and support
by many people across this country living with
ALS, including those with the disease, their families,
and caregivers.
This was especially true for its original author Bob
Macdonald.
Bob had a unique exposure to ALS through his
grandmother's, his father's, and his own experience
living with the disease. When he was diagnosed with
familial ALS, he plunged full force into the prepara-
tion of the first version of this resource manual.
His search for more information on the disease to
expand on what he already knew led him around the
world through his computer. The fruits of his search
are still evident here in the seventh edition which
reflects updated information thanks to the health care
professional contributors who so graciously gave of
their time to review the Manual and provide neces-
sary changes (see Contributors).
This manual is dedicated to the memory of all those
who have lived with ALS, but in particular to Bob
Macdonald who held a vision for the original edition
and inspired its continuation.
-2012
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LS is not an easy disease to have. Reading
about it wont be either. However, knowledge
is a powerful resource. This manual may be the
first source of ALS information you are given.
Consider it to be a complement or additional resource
to your primary source of information: your health-
care team of professionals who have a special interest
in helping you manage ALS.
H#+ (# )'E (HE !A")A
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Familiarize yourself with what is covered in the Manual
so you know where to go when you need specific
information. DO NOT feel as though you need to
read it all at once.
To get the most out of this resource, we suggest that
you C78=: >5 8C 0B H>DA C>>;1>G:
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Review the "Resource Section" early to see what additional educational
and support resources are available to help you learn more about ALS
and specific aspects of coping with ALS.
C<::B;60.A6<; (<<9@
Use the Manual to share information about ALS with friends and
family who are interested in knowing more.
Use information in the Manual to prompt discussions with your
healthcare professionals about monitoring your progress and symptom
management decisions.
#?4.;6G.A6<; (<<9@
Use the copy-ready personal assistance tools included at the back of
the "Coping with ALS" section to help you and your family caregivers
keep track of your personal details, needs, communication records,
healthcare professional contacts, equipment records, medications, and
appointments.
Use the pocket page at the end of the Manual to store Fact Sheets and
Research Updates you may download from the ALS Society of Canada
web site and other pamphlets as you collect them.
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here is no doubt that living with ALS is chal-
lenging. However, with scientific technology
speeding ahead faster and faster, there is more
hope now than ever before that better treatments for
ALS will be found, and that one day there will be a
cure. But for today, know that there are organizations,
health professionals, and others living with ALS who
can help support you. As you live with ALS always
remember:
! ALS may rob you of your physical body, but it does
not rob you of your soul.
! You live in a society that emphasizes patient autono-
my and you will be able to maintain yours.
! While embarking on a difficult journey, know you are
not going it alone. Families and friends can become
closer than ever, and you will discover new friends
who understand.
! Other people with ALS are available and willing to
share in the ups and downs of the journey.
! There are many dimensions to managing ALS and
many professionals available to help you with them.
! The resources currently available to patients are with-
out precedent.
A !E''AGE #F H#$E
! You continue to be a valued member of society who
can contribute to your family and your friends
through the human values in which you believe.
! You continue to play a role in educating your chil-
dren and providing support to your family.
! Due to the intense interest in people with ALS, the
options available to you exceed those that were avail-
able to previous generations and are expected to
increase.
! While no one has chosen this path, most have tra-
versed it with courage and with dignity.
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Amyotrophic Lateral Sclerosis:
A = absence of
<H> = muscle
CA>?782 = nourishment
#0C4A0; = side (of spine)
*2;4A>B8B = hardening
d
r. Jean-Martin Charcot, a French pathologist
who founded the field of neurology, pub-
lished the first full account of the symptoms
of ALS in 1874. ALS is also known as Charcot's
Disease, Lou Gehrig's Disease, and the most common
form of Motor Neuron Disease (MND). In Canada,
two to three people with ALS die each day.
Other types of MND you may know, although less
common than ALS, are primary lateral sclerosis (PLS)
and Kennedy's Disease (KD). PLS is different from
ALS in that it does not involve muscle wasting, may
progress over decades, and the expected lifespan may
be normal. Kennedy's Disease, a form of adult-onset
spinal muscular atrophy (SMA), is different from ALS
in that it is a chromosomal X-linked recessive disease.
Therefore only males are diagnosed. It is most often
diagnosed between ages 20-40 years, progresses very
slowly, and the expected lifespan is often normal.
Some people diagnosed with PLS at first may end up
getting an ALS diagnosis after a few years if muscle
wasting symptoms also occur. Sometimes people with
Kennedy's Disease are misdiagnosed with ALS initially.
An actual diagnosis of Kennedy's Disease is possible
through DNA testing http://www.kennedysdisease.org.
ALS destroys motor neurons which are an important
link in the nervous system. It is through motor neurons
that the brain sends messages to the voluntary muscles
throughout the body (muscles whose movement you
can control as opposed to those you cannot, like the
heart). Leg and foot muscles are controlled by motor
neurons in the lower spinal cord. Arm, hand and finger
muscles are controlled by motor neurons in the upper
spinal cord. Speaking, swallowing and chewing are con-
trolled by motor neurons in the brain stem. Respiratory
muscles are controlled by motor neurons in the upper
and thoracic levels (mid section) of the spinal cord.
The diagram below shows you what a motor neuron
consists of:
ALS does not affect the five senses of sight, hearing,
taste, smell and touch, nor does it normally affect the
eye muscles, heart, bladder, bowel, or sexual muscles.
There is no possibility that ALS is contagious.
ALS strikes about six to eight people per 100,000.
With an estimated Canadian population of 34 million,
approximately 2,000 - 3,000 people in Canada currently
have ALS. In any given year, about two new cases of
ALS per 100,000 people will be diagnosed. The inci-
dence of ALS (new cases) increases with age (Strong
and Shaw, 2003). ALS most often occurs between the
ages of 40 and 70, but it can also occur in older and
younger adults, and rarely in teenagers (Mitsumoto and
Munsat, 2001).
DE'C&I$(I#" #F A'
Dendrite
Cell Body
Nucleus
Axon Hillock
Axon
Schwann Cell
Node of Ranvier
Myelin sheath
(-$E' #F A'
The most common form of ALS is called *?>A0382
A#*. About 5-10% of cases are the inherited variety
called f0<8;80; A#*. Until recently, an abnormally
high incidence of ALS was observed in the Western
Pacific (Guam, Kii Peninsula of Japan, Papua New
Guinea). As a result of extensive research into
Guamanian ALS, it is now thought that these high
incidence rates were due to specific dietary toxins (for
example, aluminum and cycasin). With the
Westernization of this region, and the reduced
dependency on traditional foodstuffs, major declines in
the incidence of ALS in this region have occurred.
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! muscle cramps
! weakened reflexes
! flaccidity (decreased muscle tone)
! difficulty swallowing
! inability to articulate speech
! shortness of breath at rest
,??4A $>C>A %4DA>= d464=4A0C8>=:
! muscle stiffness, or rigidity
! emotional lability (decreased ability to control
laughing or crying)
! increased or hyperactive reflexes
*><4 <0H 0BBD<4 C70C C74B4 0A4 B86=B >5 =>A<0;
068=6. Over time, as muscles continue to weaken, and
the weakening spreads throughout the body, it
becomes more apparent that the cause is ALS.
In addition to a ?7HB820; 4G0<8=0C8>=, people are
often given an 4;42CA><H>6A0?7H (E$G) C4BC, 1;>>3
C4BCB, 0 $) ($06=4C82 )4B>=0=24 <068=6), 0=3
>C74A C4BCB to search for the presence of other
diseases that can look like ALS.
Many doctors, including neurologists, do not have
experience with recognizing and treating ALS. It is
best to find out who in your province is familiar with
ALS as soon as possible. Often patients are sent to
ALS specialists to confirm a diagnosis and tell the
patient they have ALS.
Telling someone and his or her family that they may
have ALS requires a sensitive, understanding and
compassionate manner. People have been diagnosed
should be fully informed about the disease, treatments,
current research and drug trials, and available support
services, such as the ALS Society in their province.
See the )4B>DA24 *42C8>= at the end of the Manual
for books, videos, and web sites about ALS.
Epidemiological research, the study of disease trends
within a population, helps to better understand a dis-
ease through the collection of information related to
disease onset, progression, treatment and care, and
demographic, environmental/lifestyle exposure factors.
*H<?C>D 4G?4A84=24, >A 544; whereas
B86=B 0A4 F70C H>D 20= B44 >A <40BDA4. The early
symptoms of ALS may seem vague. They can include
tripping, dropping things, slurred or "thick" speech,
and muscle cramping, weakening, and twitching. Some
people with these early symptoms may tend to assume
that they are normal signs of aging. As the disease pro-
gresses, the muscles of the trunk of the body are
affected. Weakness of the breathing muscles develops
slowly over months or years. In people with the
familial form of ALS, loss of function is usually more
rapid in the legs, as opposed to in the arms, among
those with sporadic ALS.
For some people, the muscles for speaking, swallowing
or breathing are the first to be affected. This is known
as Bulbar ALS. The term "bulbar" refers to the motor
neurons located in the bulb region of the brain stem,
that control the muscles used for chewing, swallowing,
and speaking. ALS symptoms, and the order in which
they occur, vary from one person to another.
+74 A0C4 >5 <DB2;4 ;>BB 20= E0AH B86=85820=C;H 5A><
?4AB>= C> ?4AB>=, with some patients having long
periods with very slow degeneration. Although the
average life expectancy from diagnosis is between three
and five years, 20% live more than five years, and 10%
live more than 10 years. Being a progressive disease,
ALS may spread throughout the body over time, and at
some point in this process, will likely involve the
muscles required for breathing.
A#* 20= 14 385582D;C C> 3806=>B4 8= C74 40A;H
BC064B 1420DB4 BH<?C>C74A
2>=38C8>=B. Because today there is not yet an available
ALS-specific diagnostic test, other diseases and
conditions have to be ruled out first. However, there
are clinical signs that can indicate wasting of motor
neurons in either the upper or lower portion of the
spine.
Doctors familiar with ALS usually see the following
signs of lower and upper motor neuron degeneration:
#>F4A $>C>A %4DA>= d464=4A0C8>=:
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! involuntary twitching of muscle fibres
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Disease registries are database tools that provide an
opportunity to collect this information to develop a risk
profile for a disease or condition, how it develops, and
how it responds to treatment and care.
In June 2011, a new national registry (the
Canadian Neuromuscular Disease Registry (CNDR) for
patients with neuromuscular disease was implemented.
It will help patients connect with researchers to partici-
pate in clinical research that will benefit patients by
offering possible new therapies, treatments and under-
standing of their disease. The CNDR is a Canada-wide
database of patients who have been diagnosed with a
neuromuscular disease. The term
neuromuscular disease refers to a group of
more than 40 diseases that affect how muscles
and nerves work. ALS is the most prominent
of these diseases in adults, and and Duchenne
muscular dystrophy (DMD) is the most
common pediatric muscular dystrophy.
The Canadian Neuromuscular Disease Registry (CNDR)
includes 17 clinics across Canada located in Vancouver,
Calgary, Edmonton, Ottawa, Toronto, London,
Kingston, Montreal and Halifax.
Why participate in the registry if you have ALS? The
Registry is the only means by which valid national epi-
demiologic data about ALS can be obtained. Patients
with neuromuscular disease will benefit from this new
national registry. The information that will be made
available to researchers will lead to a significant increase
in the number of studies leading to discovering the
cause, treatment and cure of ALS. Finding treatments
for neuromuscular diseases has been challenging, as
patients are scattered across the country. This registry
will allow doctors and researchers to look at medical data
from large groups of patients helping them to find bet-
ter ways to manage each disease.
All patients both adults and children across
Canada who have been diagnosed with a
neuromuscular disease are able to join the
registry. Patients living outside the cities with
affiliated clinics, or those not currently seeing a neuro-
muscular specialist, can register by
contacting the CNDR National Office at the
University of Calgary at 1-877-401-4494.
The CNDR is supported by the ALS Society of Canada,
Jesses Journey and the Marigold Foundation.
For more information about the registry please visit
www.cndr.org.
It has been well over a century since the first com-
plete description of ALS by Dr. Jean-Martin Charcot.
Today there is still no cure or effective treatment and
the rate of ALS is on the rise. In spite of that painful
reality, researchers are making rapid headway in under-
standing the complexity of the disease and developing
future therapies. The accumulation of knowledge in
the basic biology and potential mechanisms involved
in ALS, coupled with impressive technological
advancements, is accelerating the rate of progress in
ALS research. It is commonly held that more
advances have been made in the last ten years than in
the last one hundred, and the sense of anticipation in
the research community is stronger than ever before.
&=24 C7>D67C C> 14 0 B8=6;4 38B40B4 BC0C4, A#* 8B
=>F A42>6=8I43 C> 70E4 <D;C8?;4 8=C4A02C8=6 20DB-
4B, 0;; B70A8=6 0 2><<>= ?0C7F0H ;4038=6 C> C74
34BCAD2C8>= >5 C74 <>C>A =4DA>=B. By understand-
ing the mechanisms that trigger this common path-
way, we will ultimately understand ALS. Through such
understanding, desperately needed therapeutic options
will be developed. Already, new drug and gene thera-
pies are in development. Because of the complex
nature of ALS, it is thought that a combination of
therapeutic strategies to attack the disease at several
levels will ultimately provide the means to alter the
course of the disease. In this section, we will highlight
the potential factors and mechanisms that might play
a role in ALS and their relevance to the development
of such therapies.
In addition to effects on the motor system in the
brain, Sanjay Kalra, MD, from University of Albertas
faculty of medicine and dentistry released CF> BCD3-
84B 8= 2011 C70C DB43 03E0=243 8<068=6 C> B7>F
C70C A#* 0CC02:B <D;C8?;4 ?0ACB >5 C74 1A08= 0=3
8B =>C ;8<8C43 C> C74 <>C>A BHBC4<. Kalra used MRI
scans to detect chemical changes that indicate differ-
ent aspects of the type of degeneration seen in ALS,
including death of neurons and scarring (gliosis).
These advances have significant potential to track ALS
and its progression, enabling development of more
targeted treatments to slow or prevent the disease in
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those parts of the brain which are affected beyond the
motor system.
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The new Registry mentioned above will allow for a
potentially superior understanding of the role of envi-
ronmental exposures as they relate to ALS. At present
we know ALS is age-dependent, and is on the increase
as the average age of the population increases. The
role of an environmental factor is much discussed
every time 2;DBC4AB >5 A#* 20B4B have appeared to
occur in a particular geographic area or environmental
situation.
However, isolating specific environmental culprits has
proven difficult so far. In the 1940s and 50s, a high
incidence of ALS occurred in peoples in three regions
in the western pacific: the Chamorros of Guam, the
Auyu and Jakai of west New Guinea, and residents of
the Kii Peninsula of southern Japan. The incidence in
these areas seems to have decreased with
Westernization, suggesting an environmental culprit,
and dietary toxins have been suggested as a likely
cause. A slightly increased rate of ALS also occurs in
communities in southwestern Ontario where the water
supply comes from regions where there is a major
chemical industry.
Certain lifestyle factors such as diet, alcohol consump-
tion, exercise, and smoking tobacco, and other environ-
mental factors such as residence in rural areas, job-
related exposure to certain toxins for ALS, physical
trauma and pre-existing medical conditions have been
studied as risk factors for ALS. To date, epidemiologi-
cal research findings suggest that only smoking has
shown a strong enough positive association to be con-
sidered a probable, but not yet established risk fac-
tor (Shaw and Strong, 2003). Additional results sup-
porting a role for smoking in the development of ALS
has been reported (Gallo et al., 2009).
A study of exposure to 11 classes of chemicals, or X-
rays, provided evidence that there may be an increased
risk for ALS with exposure to formaldehyde
(Weisskopf et al., 2009).
There is a possible increased risk evident in those who
have suffered a recent mechanical trauma. An associa-
tion with electrical injury has even been postulated.
Although no single environmental agent has been
shown to directly cause ALS, worldwide epidemiologi-
cal studies consistently suggest environmental triggers
are important enough to continue to study them in
order to better understand the relationships and the
new CNDR will help to do just that.
G2;2A60 F.0A<?@ .;1 I;52?6A21 *.?6.;A@ <3 A'
Approximately 90% of ALS cases are sporadic and do
not show inheritance. However, scientists assume that
for many people who develop ALS. A genetic predis-
position may interact with other factors such as envi-
ronmental variables to produce the disease. A wide
variety of naturally occurring genetic mutations could
produce susceptibility to ALS.
Every newly identified and located ALS gene provides
scientists a piece of the ALS puzzle and creates the
opportunity to develop new animal models and cell
lines that simulate these genetic abnormalities to iden-
tify the mechanisms that may occur in ALS. Even
though inherited variants of ALS occur in a small per-
centage of ALS patients, these genetic models lend
insight into the mechanisms of the disease as a whole.
In approximately 10% of people with ALS, the disease
is inherited. There are now five different genes in
which mutations are believed to be directly causative of
ALS: SOD1, angiogenin (ANG), TARDBP, FUS, and
FIG4. These genes together account for approxi-
mately one-third of all familial ALS cases.
Research to identify both categories of genesdirectly
causative or predisposingrepresents a very dynamic
field. A website is available which reports the most
updated information:
http://alsod.iop.kcl.ac.uk/reports/reportSummary.aspx
In September 2011, a team led by Rosa Rademakers,
PhD, from the Mayo Clinic Jacksonville identified the
most common genetic cause known to date for ALS
and frontotemporal dementia. Results show that a
mutation of a single gene, called C9ORF72, accounts
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'A4BH<?C><0C82 C4BC8=6 for ALS-causative gene
mutations for adults, who have no symptoms of ALS
but do have a family history, is available but controver-
sial. It is controversial because of incomplete pene-
trance (?4=4CA0=24 is a term used in genetics that
describes the extent to which the properties controlled
by a gene will be expressed); inability to predict age of
onset, the lack of preventive measures or treatments
for ALS. For these reasons, getting tested and receiv-
ing a positive result (that is, the person does carry the
gene) may cause undue stress and anxiety about when
ALS symptoms will strike. Testing of children request-
ed by parents requires sensitive and understanding
counseling. A consensus exists that asymptomatic chil-
dren should not be tested as it removes their choice
later in life and increases the chance of social stigmati-
zation, and could negatively impact educational and
career decisions.
If you are thinking about genetic testing, ask your neu-
rologist about where you can go for genetic coun-
selling and testing. You may also self-refer to a genetic
counsellor. For more information, visit
www.genetests.org.
F?22 &.160.9@ .;1 #E61.A6C2 'A?2@@
All cells generate toxic metabolites (think of these as
the exhaust from your car and the consequences to
yourself and your passengers should your car not be
properly vented). In the cell, these exhausts (free
radicals) are a destructive form of oxygen that can
also be used by the cell under normal circumstances to
fight disease. However, 0= >E4A?A>3D2C8>= >5 5A44
>GH64= A03820;B 20= A4BD;C 8= 24;; 30<064 0=3
340C7. As might be expected, several defenses against
such a process exist. A major one is the BD?4A>G834
38B<DC0B4 4=IH<4 (*&d-1) discussed above.
Mutations in the SOD-1 gene could allow excessive
for nearly 50 per cent of the directly inherited familial
ALS and Frontotemporal Dementia (FTD) in the
Finnish population, and more than a third of familial
ALS in other groups of European ancestry. Further
studies by other groups have found mutations in this
gene in individuals with sporadic (i.e., non-hereditary)
ALS. Identifying this defective gene provides important
insights into the complex interplay between genetic risk
for the disorder and other factors which contribute to
disease onset and progression. These insights pave the
way for a better understanding of ALS and FTD biology
and the therapeutics that can be developed to counteract
it. University of British Columbias Ian MacKenzie, MD,
was a key Canadian contributor to the study.
G4=4C82 C4BC8=6 of the SOD1 gene, and the other 4
genes mentioned above, is commercially available.
Testing for mutations in the SOD1 gene is appropriate in
any patient with ALS who has another affected member
or an incomplete family history. Molecular genetic testing
could clarify mode of inheritance (i.e., autosomal domi-
nant, autosomal recessive, or x-linked dominant deter-
mined by family history) and modify risk assessment for
genetic counseling as well as perhaps indicating disease
prognosis.
Testing at other known genetic loci is usually carried out
for research purposes only. Even though some additional
loci have been identified, the majority of cases of inherit-
ed ALS remain unexplained. There are research projects
that seek blood samples from persons with familial ALS
to further their work in identifying more genetic loci and
better understand the disease process. Ask your neurolo-
gist for more information about these studies.
G4=4C82 C4BC8=6 B7>D;3 0;F0HB 14 022><?0=843 1H
5>A<0; 64=4C82 2>D=B4;;8=6. Genetic counselling is the
process of providing individuals and families with infor-
mation on the nature, inheritance, and implications of
genetic disorders to help them make informed medical
and personal decisions. G4=4C82 2>D=B4;;>AB are specially
trained professionals who use family history and genetic
testing results to clarify genetic risk for other family mem-
bers and help you weigh the pros and cons of testing.
EE4= C7>D67 8=74A8C43
E0A80=CB >5 A#* >22DA 8= 0
B<0;; ?4A24=C064 >5 A#*
?0C84=CB, C74B4 64=4C82 <>34;B
;4=3 8=B867C 8=C> C74
<4270=8B5 C74
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secreted factors diffuse through the nervous system,
killing adjacent motor neurons.
"2B?<A?<=560 F.0A<?@
+74B4 8<?>AC0=C 502C>AB 5>A C74 6A>FC7 0=3 <08=C4-
=0=24 >5 <>C>A =4DA>=B 8= 7D<0=B 70E4 144=
B7>F= C> 4=70=24 <>C>A =4DA>= BDAE8E0; 8= 24;; 2D;-
CDA4 4G?4A8<4=CB 0=3 8= <824 F8C7 0 E0A84CH >5 <>C>A
=4DA>= 38B>A34AB. Although it is not clear how deficien-
cies of neurotrophic factors may affect human motor
neurons, several attempts have been made to determine
whether neurotrophic factors can slow the rate of pro-
gression of ALS by first testing these agents in animal
models of the disease.
%4DA>CA>?782 502C>AB F4A4 C74 58ABC 8<?>AC0=C 20C4-
6>AH >5 <>;42D;4B C4BC43 8= ;0A64-B20;4 2;8=820; CA80;B
>5 A#*. These included brain derived neurotrophic fac-
tor (BDNF) and ciliary neurotrophic factor (CNTF).
While these trials were not successful, it became clear that
the question of delivering therapeutic reagents to motor
neurons is a tremendous challenge which needs to be
addressed. Recently, three other promising neurotrophic
factors, glial-cell-line-derived neurotrophic factor
(GDNF), vascular endothelial growth factor (VEGF), and
insulin-like growth factor (IGF1), have shown promise in
ALS mouse models. By developing drugs to manipulate
the interactions of neurotrophic factors, researchers hope
to learn about and gain some control over this potential
aspect of ALS.
A9A2?21 $?<A26; .;1 "2B?<369.:2;A !2A./<96@:
Advances in technology in the field of protein research
have opened up new avenues into understanding the ?A>-
C48= <4270=8B<4-
CAH, which enables scientists to detect which proteins are
present in an extremely small sample, has become very
advanced. Mass spectrometry is also providing
researchers with the tools to develop a desperately needed
simple, A0?83 C4BC C> 3806=>B4 A#* by identifying pro-
teins generated through the course of the disease.
Powerful electron microscopy reveals the configuration
and behaviour of proteins. Such technological advance-
ments provide insights into how proteins fold and unfold
and interact with their environment.
free radical reactions, damaging the neuron. Canadian
researchers have documented the existence of excessive
levels of proteins damaged by free oxygen radicals
within neurons in ALS, suggesting that either the neu-
ron synthesizes excessive levels of free radicals, or that
it is incapable of detoxifying those that are normally
produced.
In healthy individuals, special enzymes protect cells
from dangerous free radicals. But <0;5>A<43
4=IH<4B, BD27 0B C7>B4 5>D=3 8= A#*, <0H 70E4
C74 >??>B8C4 45542C, 8= 4BB4=24 8=8C80C8=6 30<064
A0C74A C70= ?A>C42C8=6 0608=BC 0CC02: 1H 30=64A>DB
5A44 A03820;B, in a twisted game of molecular tag. Neil
Cashman, MD, and colleagues at the University of
British Columbia reported in 2011 on their use of a
truncated enzyme and special antibodies to analyze the
folding and misfolding of a key protein. +74 6>0; 8B C>
2A40C4 =4F ?A>C48=B F8C7 18=38=6 20?028CH C> 02C 0B
0 RBC82:H ?0C27S F74A4 R103S 4=IH<4B 20= 0CC027
0=3 14 A4<>E43 5A>< C74 BHBC4<. With further
development, these proteins have the potential to block
unhealthy interactions, thereby stopping disease pro-
gression in its tracks.
Therapies geared to reducing oxidative stress are in
development, including gene therapy and new pharma-
cotherapy. The properties of certain foods and vita-
mins are also studied for their ability to reduce free rad-
icals. Vitamin Es antioxidant properties made it the
prescribed therapy for people with ALS one hundred
years ago and it still is today, although with little effect
in hindering the course of the disease.
I::B;<9<460.9 F.0A<?@
In recent years, A4B40A274AB 70E4 2>=B834A43 7>F
8=9DA43 <>C>A =4DA>=B <867C B?DA 0= 8=5;0<<0C>-
AH A4B?>=B4 C70C 2>D;3 2>=CA81DC4 C>, 0=3 4E4= ?4A-
?4CD0C4, 0 20B2034 >5 24;; 340C7 8= C74 =4AE>DB BHB-
C4<. The immune cells of the nervous system, called
microglial cells and astrocytes, can respond to neural
injury in a way that can be either beneficial or harmful.
This microglial response which begins as a localized
inflammatory reaction, has been implicated as a trigger
of cell death pathways in motor neurons. While a
mechanism that serves as a response to regional cell
injury is useful on the small scale to clear away dam-
age, it can become devastating on a large scale as
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Abnormalities in the handling of excitatory amino
acids by the nervous system, particularly glutamate, may
be critical to the occurrence of ALS. Through damage
to the normal transporter mechanisms by which glu-
tamate is removed from the nervous system, excessive
glutamate accumulates. When glutamate binds at neu-
ronal receptors, there is an influx of calcium ions into
the cell. The motor neurons may not be able to deal
with the excessive levels of calcium flooding in, result-
ing in damage. Researchers are investigating ways to
help the nervous system handle calcium and glutamate.
Riluzole, the single drug currently available for the
treatment of ALS, shows very modest results. Its action
is not well understood but is thought to somehow
affect glutamate mechanisms.
Clearly, there is a critical need to find treatments to
effectively slow the progression of ALS, or cure it
completely. However, with todays quickly advancing
scientific technologically, the odds of finding effective
treatments for ALS are better than ever before.
D?B4 .;1 C96;60.9 (?6.9@
Medications used to treat a disease are based on the
results of laboratory and clinic-based research studies,
or trials. Drugs are first developed in the laboratory
using technological methods and animal model testing
to see if the treatment has an effect on the disease
process. Treatments that show promise then need to
be studied on actual patients with the disease in a clini-
cal setting to test for 3AD6 34;8E4AH 4558284=2H (i.e.,
what is the best way to give the medicine?), B054CH (i.e.,
how well is it tolerated and at what dosage?), and 4558-
202H (i.e., is the drug actually changing the expected
course of the disease in patients receiving the drug as
compared to others who are not and to what degree is
there a difference?). .78;4 =>C 0;; 2;8=820; CA80;B 0A4
BD224BB5D; 0C 834=C85H8=6 =4F, 0224?C01;4 CA40C-
<4=C, C74H =4E4AC74;4BB 74;? C> 0=BF4A A4B40A27
@D4BC8>=B 0=3 <>E4 A4B40A27 8= 0 5>AF0A3 38A42-
C8>=.
Clinical trials are subject to stringent research protocols
for the protection of human subjects. From time to
time there may be an opportunity for you to participate
A B86=0CDA4 540CDA4 >5 A#* 8B C74 022D<D;0C8>= >5
=4DA>58;0<4=CB 0=3 >C74A ?A>C48=B 8= C74 <>C>A =4D-
A>=B. NFs are believed to be responsible for maintaining
the normal neuronal structure and shape. Studies making
use of transgenic models to alter neurofilamentexpression
reveal that abnormalities in the proportion of neurofila-
ments, or the way in which neurofilaments interact with
each other -- or with other proteins, could play a role in
the development of ALS. Peripherin, ubiquitin and the
recently identified TDP-43 and FUS proteins are all being
investigated for their roles in aggregate formation in ALS.
Many other types of cellular proteins and enzymes may
play a role in ALS. Protein kinases are enzymes within the
brain and spinal cord
that regulate many cellular functions. Studies have
revealed that abnormal levels of protein kinases exist in
the nerve tissue of people who died of ALS. By examin-
ing this tissue in mouse models, researchers are investigat-
ing how skewed levels of these important regulatory
enzymes may trigger cell death in the motor neurons in
the hope of finding a way to normalize the protein kinase
ratios to prevent cell death from triggering.
By studying the spinal cords of people who died from
ALS, Dr. Jean-Pierre Juliens team at Laval University in
2011 discovered an overproduction of a protein called
TDP-43 in their nerve tissues. This protein can play a key
role: when it is overexpressed, it exaggerates
the inflammatory response that increases the vulnerability
of nerve cells to toxic molecules that circulate in the body.
The team is testing an inhibitor that could lead to the
development of drugs to reduce this inflammation and
partially restore the neuromuscular function.
'A>C4>B><4B 0=3 ?A>C48= 270?4A>=4B are cellular sys-
tems that shuttle proteins and digest them into their basic
components in order to clear away damaged proteins in
the cell. Researchers are investigating these systems in
mouse models and cell lines to understand their role in
the pathogenesis of ALS and how they might be used
therapeutically to hinder the disease.
BH BCD3H8=6 C74 ?A>C48=B 05542C43 1H 64=4C82 <DC0-
C8>=B 8= 50<8;80; A#*, and the behaviour and interactions
of the proteins involved in aggregate formation in motor
neuron cells, A4B40A274AB 0A4 608=8=6 0 14CC4A D=34A-
BC0=38=6 >5 C74 A>;4 >5 01=>A<0; ?A>C48= <4270-
=8B<B 8= A#*.
I' A' (&EA(ABE?
in a trial. To learn more about the clinical trial process,
refer to Fact Sheet: C%$'$ca% T+$a%,4A P+$&+. This fact
sheet can be downloaded from the ALS Society of
Canada web site, www.als.ca. The Fact Sheet covers why
trials are important, the four phases of trials, how trials
work, who conducts them, safety issues, risks and bene-
fits, informed consent, and questions to ask your doctor.
In 2008, ALS clinicians from 15 centres across Canada
incorporated into a group called CALS (Canadian con-
sortium for clinical research and trials). As a group,
CALS aims to bring clinical trials to ALS patients across
Canada. Their first clinical trial to test the efficacy of
lithium was carried out in partnership with a similar
consortium from the eastern U.S. NEALS. The study
began in January 2009 and investigators were asked to
halt the study following an interim data analysis in
September 2009. While the results from the lithium
clinical trial were disappointing in that the study was not
able to duplicate the survival benefits seen in the original
pilot study, the CALS centres continue to be sites of
clinical trials for a number of promising ALS treat-
ments. Currently, a stage 3 trial is in progress to study
the efficacy of 245CA80G>=4, to see if it prolongs survival
and/or slows decline in function in patients living with
ALS. Ceftriaxone is an antibiotic in the class of
cephalosporins that is approved to treat certain types of
infections. Ceftriaxone may hold potential for ALS
because the drug may also increase the level of a protein
that decreases the level of glutamate - a potentially toxic
nervous system messenger - near nerves, thereby pro-
tecting motor neurons from injury. Enrolment for this
trial has been met. For more information on this trial:
http://www.als.ca/en/research/clinical-trials/stage-3-
ceftriaxone-clinical-trial-begins
A Phase III study to evaluate the efficacy, safety, and
pharmacokintetics of 34G?A0<8?4G>;4 in patients with
ALS is also underway in Canada. Six CALS centres are
involved to study the effect of this compounds neuro
protective properties on slowing functional decline and
extending survival. This multi-national trial is also being
conducted in the US, Europe, and Australia. Enrolment
for this trial has been met. For more information on
this trial: http://www.als.ca/en/research/clinical-tri-
als/phase-iii-clinical-trial-dexpramipexole-als
Ask your neurologist for up-to-date information on
what clinical studies are currently being conducted to
help us better understand how to treat ALS and to find
out if you meet eligibility criteria to enrol in studies
thatare recruiting subjects.
A database of worldwide clinical trial information can
be found through the World Federation of Neurology at
www.wfnals.org, or at www.clincaltrials.gov.
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Internet and other similar services; learn to appreciate
other things in the world around you, things that you
previously took for granted; take time to read and lis-
ten to music and learn more about spiritual awareness.
The list can go on and on. It won't likely include every-
thing you've always wanted to do, but it can include
enough to give you a full and satisfying life. It all
depends on your attitude and imagination.
Hope, faith, love, and a strong will to live offer no
promise of immortality, only proof of our uniqueness
as human beings, and the chance to experience full
growth, even under the grimmest of circumstances.
The clock provides only a technical measure of how
long we live. Far more real than the ticking of time is
the way we open up the minutes and invest them with
meaning.
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any people with a serious disease will feel
torn between keeping a positive attitude to
keep illness away and knowing that at some
time they have to accept they do have a serious disease.
When the existence of disease is known, "fighting it" is
another approach some people take. Others prefer to
avoid a win-or-lose approach, and instead deal with
things day by day.
An ALS diagnosis has the power to strengthen healthy
family relationships, or shatter already weak ones. It
can unpredictably bring out the best in some people
and in others, awaken emotions they cannot manage.
To help you cope and instill hope, the ALS Society is
here for you and your family (*42C8>= 3). This section
is intended to give you suggestions for personal cop-
ing, as well as tips for others around you who will also
be going through changes with you. *42C8>= 4, sub-
section A))+(ac#$'" E'd-(!-L$! I,,., a'd Ad/a'c
P%a''$'", and *42C8>= 6 L"a% a'd F$'a'c$a% I,,.,
also provide information that may help you and your
family to cope with changes and planning ahead.
Social workers, psychologists, counsellors, and support
groups can be very helpful. />D 20= ;40A= 5A>< C7>B4
F7> 0A4 50<8;80A F8C7 F70C H>D 0A4 6>8=6 C7A>D67,
B70A4 D=34ABC0=38=6 F8C7 >C74AB F7> 70E4 C74
B0<4 270;;4=64B 0B H>D, 0=3 ;40A= 7>F ?4>?;4
F8C7 <>A4 03E0=243 A#* 0A4 340;8=6 F8C7 8BBD4B
H>D <867C 5024 8= C74 5DCDA4. The ALS Society, hos-
pices, and other organizations provide these types of
services to help provide social and emotional support
throughout the course of the disease.
One's life with ALS can be looked upon as a series of
progressive functional losses, but it can also be a
unique opportunity for enrichment. The choice is
yours. If you choose enrichment, it can take many
forms. The choices are very personal.
You may decide to develop closer relationships with
family and friends; make new friends with others who
are sharing your experiences and with many other peo-
ple who are involved with ALS; learn about computers
and how to communicate with others through the
(HE A' DIAG"#'I': "#+ +HA(?
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12
Acceptance of ALS does not mean giving up. It should
be the first step in making the most of your life with
ALS. There is much that can be done to help you live a
productive and enjoyable life. Be positive but do not
trivialize the situation. It isn't helpful to pretend that
everything will be fine or that ALS is not a very serious
condition.
On the other hand, there is no need to dwell on the
negative aspects of the disease. Twenty percent of
people with ALS live more than five years and nearly
10% live ten years or more. You could be one of those
people. And thankfully, neurological research is mov-
ing steadily ahead, so no one knows when a break-
through may occurit could be sooner than later.
These facts give hope and hope is a crucial part of life.
Achieving a balance between hope and realism is diffi-
cult at times, but something we all must learn to do.
If you are a person with ALS who has decided to take
charge of your condition, 74A4 0A4 0 54F ?A02C820;
C78=6B H>D B7>D;3 2>=B834A 3>8=6 F8C7>DC 34;0H:
1. C>=C02C H>DA 50<8;H 3>2C>A
When doctors find out that one of their patients has
ALS, some might say there is nothing they can do to
help. In fact, they probably can help but they don't
know it! If your doctor hasn't already done so, request
that he or she refer you to the nearest ALS Clinic or
ALS Rehab team. Your doctor will also be able to help
you in other ways in the future, such as signing your
application for a CPP disability pension, and the
Canadian Revenue Agency (CRA) Disability Tax Credit
Certificate for your annual tax deduction, or by
approving your application for home care.
You should also suggest that your doctor access the
resources from the ALS Society by requesting a copy
of this manual or other information the ALS Society
makes available. Also encourage your doctor to rely on
specialists and therapists associated with an ALS clinic
or centre for consultations and advice. You also need
to discuss with your family doctor his or her availability
to do home visits as ALS progresses.
2. )468BC4A F8C7 C74 A#* *>284CH
The ALS Society provides various services to assist
people with ALS. Let your local provincial ALS Society
know that you are a person with ALS in their area, and
that you would like to register with them and receive
any helpful information they provide.
3. A??;H 5>A 0 d8B01;43 '0A:8=6 '4A<8C
Your local city or provincial government will issue a
disabled parking permit to people with ALS. Get the
application through your local ALS Society or ALS
Clinic.
4. &1C08= 0 $4382 A;4AC BA024;4C
A Medic Alert bracelet can be useful to tell others
about your condition, in the event that you are unable
to speak. This may be particularly useful for those with
Bulbar symptoms who are unable to speak or have
slurred speech. For further information and an order
form call the Canadian Medic Alert Foundation at 1-
800-668-1507.
5. C>=C02C H>DA 0DC> 8=BDA0=24 ?A>E834A
If you don't report your disability to your insurance
company, your auto insurance coverage may not be
valid. Driving sometimes requires fast foot and hand
reactions. Enquire about a driving test service in your
community that will certify your current abilities for
insurance purposes.
(# D# I'(. . .
1. C<;A.0A F<B? 3.:69F 1<0A<?
2. &246@A2? D6A5 A52 A' '<062AF
3. A==9F 3<? . D6@./921 $.?86;4 $2?:6A
4. #/A.6; . !2160 A92?A B?.0292A
5. C<;A.0A F<B? .BA< 6;@B?.;02 =?<C612?
!EE(I"G (HE CHAE"GE
+74B4 C>>;B F4A4 030?C43 5A>< Your
Personal Guide to Motor Neurone
Disease, $>C>A %4DA>=4 d8B40B4
ABB>280C8>=, %>AC70<?C>=, ,"
FFF.<=30BB>280C8>=.>A6
E@D8?<4=C )42>A3
Over time, you will likely find the need for various
pieces of assistive equipment. Realistically, you may
acquire different items form various sources. This
form provides a place to document by date each item
received, whom you need to contact about that item,
and their phone number.
$43820C8>= #8BC
This form allows you to keep track of prescribed and
over the counter medicines you are taking. You may
find it useful to take this form with you when you go
to the doctor to jot down information about how to
take the medicine and if there are any side effects or
alternatives.
A??>8=C<4=CB #>6
You may already have your own system of keeping
track of appointments in a day planner or electronic
device. If not, you may want to use this log to jot
down specifics regarding appointments you have made
relative to your ALS care.
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You can help yourself cope by staying organized and
keeping track of your changing needs, who you have
been in contact with and for what, appointments you
have, medications you take, etc. To help you stay on
track, several ?4AB>=0; 0BB8BC0=24 C>>;B have been
included for you at the end of this section. Each one is
a copy-ready form. Do not write on the original, but use
for photocopying. Keep your working forms in a file at
home for easy access by you and your family caregivers.
Some people find dedicating an accordion file case
specifically for your ALS care management files helpful.
The following tools are included in this section:
'4AB>=0; d4C08;B
This lists your contact information, date of birth, living
arrangements, caregiver information, and type of ALS.
This is helpful to share with healthcare professionals you
are coming into contact for the first time as repeating
this may become tedious.
"A1>DC $4"
On this page you can describe how ALS is affecting you
and your current individual needs. This may be helpful
for nursing staff if you are hospitalized, or for people
who come into your home to care for you.
C><<D=820C8>= )42>A3
This is a handy tool to document what healthcare profes-
sionals have said to you when they come to visit you, or
when you go to visit them. If you prefer that they docu-
ment what they have said or what they say they will
arrange for you, ask them to use your form. It is also a
way for them to see what other types of visits you have
had or what referrals have been made for you so that
efforts are not being duplicated.
'A>54BB8>=0; C>=C02C *744C 0=3 C0A37>;34A
You may choose to use both or one of these tools as a
mechanism to keep your healthcare professional contacts
organized. Retain the name and contact information for
all professionals you see either in the clinic, through
home care, community care centres, hospitals, etc.
(##' F#& '(A-I"G #" (&ACK
It is important to be aware that members of your fami-
ly and your friends are experiencing emotional reac-
tions to your disease. They may feel guilty
that you
have ALS
and they are healthy. They
may also be short-tem-
pered because of the
extra daily responsibili-
ties that they face -
banking, raising children
with less help from you, more
chores - all this in addition to the
care they give you. They may feel that it is not
fair and then feel guilty about reacting this way.
"44?8=6 C74 ;8=4B >5 2><<D=820C8>= >?4= 8B C74
14BC F0H C> F>A: >DC C74B4 544;8=6B. Talk openly to
your family about how you feel. Encourage them to
share their feelings with you. If this is hard to do, it
may be useful to talk with a social worker or other
member of your ALS team. He or she may be able to
help you and your family to solve communication
problems. It is most important that you have someone
to talk to who will not be upset by what you are saying.
The person you need may be one of your healthcare
professionals, a friend or a family member.
Members of your immediate family will likely become
involved in your daily care and assistance. Most people
with ALS remain in the home for as long as possible,
and the demands upon family members can be great.
Your primary "informal" caregivers, such as your
spouse, partner or grown children, may find that your
care, especially in the later stages of the disease, is tak-
ing up most of their lives. It is natural for them to
want to give all that they can to help you, but there
should be limits to self-sacrifice.
Caregivers must continue to have lives of their own
and take care of themselves. Spending time in the
company of friends or family who are not sick, in the
pursuit of hobbies or activities in addition to care giv-
ing, or quiet time alone are important refreshers.
These periods of respite allow caregivers to recover
from the stresses of care giving and make them more
effective, balanced helpers. Do not hesitate to ask
+8?B 0=3 A3E824:
other family members to fill in for your primary care-
giver while he or she takes regular breaks or, if possi-
ble, arrange for paid help. A social worker or ALS
Society representative may be able to help you identify
respite services and any available funding
arrangements.
The needs of a caregiver
tend to take a back seat
to the needs of the sick
person. It is hard to have
a serious illness, but it is
also difficult to care for
someone with one. Most peo-
ple, sick or well, feel a combination
of some or all of the following emotions at dif-
ferent times when dealing with illness. Most important-
ly, no one should feel guilty about any of these feel-
ings. They are perfectly normal and to be expected.
Commonly experienced emotions in both the initial
and longer terms are:
=8C80; 4<>C8>=B:
Curiosity
Love
Closeness and openness to others
Hope
Disbelief
Loss
Anticipatory grief
Guilt
Erosion of trust
Denial
Responsibility
#>=6-C4A< 4<>C8>=B:
Persistence
Hope
Love
Appreciation of the value of life and of others
Sadness
Guilt
Loneliness
Jealousy
Annoyance
Feeling trapped
Feeling overwhelmed
See the following Fact Sheets (available to
download at www.als.ca/media/als_fact_sheet.aspx)
and the R,(.+c Sc-$(' for helpful books and web sites.
f8ABC *C4?B 5>A f0<8;84B:
For families of those recently diagnosed with ALS
.0HB C> H4;?:
Assisting Families living With ALS
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C#$I"G '(&A(EGIE' F#& FA!I- !E!BE&'
See the following Fact Sheets:
C0A468E4A *CA4BB: 10 Signs of Caregiver Stress
)43D28=6 *CA4BB: Reducing caregiver stress,
finding ways to feel better
family. It is important that your family members and
counsellors helping your family take time to work
through the problems children may have in coming to
terms with ALS in their family. )4B>DA24B 5>A 278;-
3A4= 0E08;01;4 C7A>D67 C74 A#* *>284CH 8=2;D34:
When Someone Special has ALS-ABooklet for Children
When your Parent Has ALS-ABooklet for Teens
Helping Children Cope with ALS-AParental Information
Guide
Grandpa, What is ALS? (produced by the ALS Society of
Alberta)
Contact your provincial ALS Society to find out more
about how you can acquire these print resources.
The ALS Society of Canada has a section on its website
called als411 which caters to youth with a parent with
ALS. The first three resources listed above can be
downloaded from the website, www.als411.ca.
Additional booklets for school staff and health care
professionals on talking with children can also be
ordered in print or downloaded.
The feelings of adults and children in upsetting situa-
tions are quite similar. Anger, helplessness, fear, hope,
and despair are commonly experienced. Children, how-
ever, have fewer ways of expressing their emotions and
dealing with them. Younger children tend not to express
themselves in words and will act out their feelings.
Older children can find it hard to talk about how they
feel, and teenagers often do not have friends with
whom they can talk about serious situations.
For children of all ages, feelings can be expressed
through emotional and behavioural changes. Children
may have questions that they may be afraid to ask
because everyone is so upset, and they do not know
how to find things out by themselves. Although many
people feel that children should be protected from sick-
ness, this does not help the child. The child will know
that something is wrong and will get upset anyway.
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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put themselves first
sometimes make mistakes
have their own opinion and convictions
change their mind or decide on a different
course of action
protest unfair treatment or criticism
- L$,- 1c+ )-d !+(& ALS: S-+a-"$, !(+
L$/$'" , ALS S(c$-2 (! B+$-$,# C(%.&b$a, 1993
Although ALS is not primarily a disease of the young,
it sometimes happens that the family of the person
with ALS includes young children. It is easy to forget
that they need to know how the disease will affect you
as a beloved parent or grandparent, and the whole
HE$I"G CHID&E" C#$E
A': IA'@ .99 6; A52 3.:69FH
O+0;: 0B >?4=;H 0B ?>BB81;4 0A>D=3 278;3A4=, as
secrets make everyone uncomfortable.
OE=2>DA064 278;3A4= C> C0;: 01>DC 7>F C74H
544;, to cry if they want to, and to talk about the
situation to anyone with whom they feel comfort-
able. Children may hide their feelings at times, but
that does not mean that they do not care, or are not
feeling anything.
OE=2>DA064 278;3A4= C> 74;? F74= C74H
4G?A4BB C74 34B8A4 C> 3> B>. Being useful will
make them feel involved and valuable. They do not
have to help with medical care: Doing more chores
at home or just reading and spending time with
their relative with ALS are all possibilities.
O$0:4 BDA4 ;854 6>4B >= 0B =>A<0;;H 0B ?>BB8-
1;4 5>A 278;3A4= (and don't be afraid to ask others
to help you make this happen) like keeping them in
activities they have always done, spending time with
friends, going out as a family.
OA;;>F 278;3A4= C> 14 8=E>;E43 8= ?;0==8=6
50<8;H 02C8E8C84B C70C F8;; 8=2;D34 C74 A4;0C8E4
F8C7 A#*. This helps them feel useful and better
understand lifestyle changes that must be made.
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16
(.986;4 A< C5691?2;
When dealing with children experiencing sickness and
big changes in their families and lives, it is necessary to
explain everything as fully as possible. B420DB4 03D;CB
C4=3 =>C C> 4G?;08= C> 278;3A4= F70C 8B 70??4=8=6,
278;3A4= >5C4= 1;0<4 C74<B4;E4B 5>A C74 B03=4BB 8=
C74 7>DB4 0=3 544; E4AH 6D8;CH. They may want to
know what exactly it is that the sick person has,
whether they can catch it too, what will happen to the
sick person, and whether that person will die. These
questions should be answered as positively as possible.
For example, instead of telling the child that a person
is very sick or dying, something like: "W%%, -#2 a+
'(- d($'" /+ 2 0%% +$"#- '(0, b.- -# d(c-(+, ,a2 -#a-
-#+ a+ ,-$%% -#$'", 0 ca' d(. W ca'....." gives hope
without being dishonest.
C78;3A4= B7>D;3 :=>F C70C C74H 20= 0B: @D4BC8>=B
0=3 C70C B><4>=4 F8;; CAH C> 0=BF4A C74<. If their
parents do not feel able to talk to them, then a relative,
friend, or doctor should make sure that the child
knows that someone is always available to talk, not
only about the illness but also about anything that is
worrying the child.
A <09>A 2>=24A= >5 278;3A4= 8B >5C4= F70C F8;;
70??4= 85 C74 B82: ?4AB>= 142><4B E4AH B82: >A
384B. They may want to know if they will have to
move, who will look after them, if they will have to
give up their favourite things, change schools, and so
on. They may be afraid to ask about these things, so
they should be reassured and told about any planned
changes before a crisis interrupts their normal routine.
Very young children may be upset by what is going on,
but will probably not be able to understand your expla-
nation. Giving them lots of hugs, love and attention
helps until they are old enough to understand the situa-
tion in more detail. .70C4E4A CA0=B?8A4B, 3> H>DA
14BC C> :44? C74 278;3A4= 8=E>;E43 0=3 544; B42DA4.
Do not hesitate to turn to members of your healthcare
team or the ALS Society for advice or help when you
need it. The web site www.alsindependence.com has
excellent information on how to explain ALS to chil-
dren of various ages.
F6;.9 "<A2 <; C<=6;4H
ALS, like many chronic diseases affect the person with
the diagnosis and those around them. Each person
needs support and resources to learn, accept, and cope
with the changes. The R,(.+c Sc-$(' at the end of the
Manual includes many books, videos, and web sites
that may be helpful to you. Because ALS is a progres-
sive condition, change is on-going. Therefore, tools to
help you cope may be useful at various points in time
when you are living with ALS.
<;4-A2?: D.F@ A< 529=
05691?2; 0<=2H
O'0H 034@D0C4 0CC4=C8>= C> 278;3A4= >5 ?0A4=CB
F8C7 A#*. This may mean asking a grandparent or
other family member or close friend to help you
with this.
OEG?;08= C> 278;3A4= C70C 0 270=64 8= 0??40A-
0=24 3>4B =>C <40= C74 B82: ?4AB>='B 544;8=6B
C>F0A3 C74< 70E4 270=643. Protect children from
the emotional swings of the sick person, if mood
changes are occurring.
OA;;>F 278;3A4= A4B?8C4, C>>. Like caregivers,
they need a break to enjoy themselves.
OC>=C8=D4 C> 4=2>DA064 278;3A4= C> 4G?A4BB
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+
he ALS Society of Canada was founded in
1977 as a national non-profit, charitable organ-
ization dedicated solely to providing a variety
of services to people with ALS and their families. The
Society has affiliated Societies in every province in
Canada and remains the only organization in Canada
dedicated solely to those affected by ALS.
In effect, the Society is mandated to help you today
through $'!(+&a-$(' and ,.))(+-, as well as tomorrow
through funding +,a+c# that will change the course of
ALS and ultimately put an end to it.
$?<C616;4 I;3<?:.A6<;
The ALS Society of Canada provides comprehensive,
accurate, and timely information about ALS to those
with ALS, those affected by ALS, the research and
healthcare communities, the media, our donors, and
volunteers.
We communicate through several
publications such as our Ma'.a%
!(+ P()% L$/$'" 0$-# ALS, research
publications, brochures, fact
sheets, booklets and our extensive
web site: www.als.ca. For your
reference, a list of ALS Society
publications, as well as other edu-
cational resources, is included at
the end of this manual in the "Resources" section.
Contact your provincial society office to order hard
copies or download from the ALS Canada website.
In addition to being a source for on-line educational
materials, the A#* *>284CH >5 C0=030 web site is a
great place for you to find current, trustworthy infor-
mation about key ALS research, ALS and Society news,
advocacy initiatives, links to provincial societies, other
useful resource sites, and much more. "Knowledge is
power," so learn as much as you can!
'B==<?A6;4 &2@2.?05
The ALS Society of Canada is 343820C43 C> 58=38=6
C74 20DB4 >5 0=3 2DA4 5>A A#* through funding
high-impact research. The Society uses a peer review
&DA $8BB8>=:
granting process each year to award worthy projects
being conducted by scientists in Canada. Since 2000
we have funded research in partnership with Muscular
Dystrophy Canada. This Neuromuscular Research
Partnership (NRP) works with the Canadian Institutes
of Health Research (CIHR) to fund excellent and rele-
vant research.
Only the most promising projects by the finest scien-
tists are funded and, over the years, this strategy has
been rewarded with significant advances in our knowl-
edge of ALS. With the acceleration of results because
of advances in neurology and other areas of science,
we know that effective therapies and a cure are now,
more than ever, within reach.
To learn about the kind of research the ALS Society is
funding, see:
www.als.ca/research/our-research-program.
$?<C616;4 'B==<?A
Support programs such as equipment loan programs,
support groups, and other client
support services are provided at the
provincial level. Available B4AE824B
E0AH 1H ?A>E8=24. Specific infor-
mation on what is offered in your
province may be included as an
additional insert at the end of this
Section. If you did not receive the
Ma'.a% through a provincial society
representative, please refer to the contact list below to
find out what is available to you in your province and
to register so you may benefit from what is offered.
At both the national and provincial levels there are
B?4280; 4E4=CB, ?D1;82 0F0A4=4BB, 0=3 03E>202H
02C8E8C84B in which you and your friends and family
members may wish to participate such as ALS
Awareness Month in June, The WALK for ALS, or
advocacy efforts that focus on making changes to pub-
lic policy to benefit persons affected by ALS.
Advocacy activities may involve letter writing cam-
paigns to strategic legislative visits, to a co-ordinated
ALS Day at federal or provincial legislatures.
Participation in Society activities can be very
empowering.
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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C<;A.0A6;4 A52 '<062AF
To contact the ALS Society of Canada, please use the
information provided below:
A#* *>284CH >5 C0=030
3000 *C44;4B AE4=D4 E0BC, *D8C4 #200
$0A:70<, &=C0A8>
#3) 4+9
+4;: (905) 248-2052
f0G: (905) 248-2019
1-800-267-4257
FFF.0;B.20
For programs and services available through the ALS
Society in your province or territory, please use the fol-
lowing contact information:
A;14AC0 0=3 %.+
www.alsab.ca
(403) 278-2257
Toll Free: (888) 309-1111
BA8C8B7 C>;D<180 0=3 /D:>=
www.alsbc.ca
(604) 278-2257
Toll Free: (800) 708-3228
$0=8C>10 0=3 %D=0EDC
www.alsmb.ca
(204) 831-1510
Toll Free (866) 718-1642
%4F BAD=BF82:
www.alsnb.ca
(506) 532-5786
Toll Free: (866) 722-7700
%4F5>D=3;0=3 0=3 #01A03>A
www.envision.ca/webs/alsnl
(709) 634-9499
Toll Free: (888) 364-9499
%>E0 *2>C80
www.alsns.ca
(902) 454-3636
Toll Free: (866) 625-7257
&=C0A8>
www.alsont.ca
(905) 248-2101
Toll Free: (866) 611-8545
'A8=24 E3F0A3 B;0=3
www.alspei.ca
(902) 439-1600
Toll Free: (866) 625-7257
(DK142
www.sla-quebec.ca
(514) 725-2653
Toll Free: (877) 725-7725
*0B:0C274F0=
http://alssask.ca
(306) 949-4100
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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anaging ALS is a continually changing chal-
lenge. Although ALS is a degenerative dis-
ease, the rate at which neurons and muscles
degenerate is unpredictable and varies greatly from one
individual to another. In some cases the disease seems
to have reached a plateau, while in others it reaches a
standstill for varying lengths of time. Also, ALS can
progress steadily at a rapid or slow rate. Whatever the
rate of muscle degeneration, you should remain as
active as possible, without causing fatigue in affected
muscles. C 0;B> 74;?B C> 5>2DB >= F70C H>D 20= 3>,
A0C74A C70= >= F70C H>D 20='C 3>.
In order to remain as functional as possible for as long
as possible, you will need a supportive, patient-centred
healthcare team who understands ALS, your personal
situation, and the options that will be available to you.
As time goes by you will need to work with your
healthcare providers to treat various symptoms of ALS
and adapt to an array functional changes. An overview
of treatments is discussed in this section, but for more
information on specific ALS management issues the
following sub-section tabs can be found in this section:
Adapt i ng t o Changes i n Mobi l i t y and
Mai nt ai ni ng Independence
Adapt i ng t o Swal l owi ng Probl ems
and Mai nt ai ni ng Good Nut ri t i on
Mai nt ai ni ng Oral Heal t h
Adapt i ng t o Changes i n Speech and
Mai nt ai ni ng Communi cat i on
Adapt i ng t o Changes i n Breat hi ng
and Mai nt ai ni ng Lung Funct i on
Approachi ng End-of-Li fe Issues and
Advance Care Pl anni ng
A224BB C> 740;C720A4 ?A>54BB8>=0;B F7> 0A4 :=>F;-
436401;4 01>DC A#* 0=3 F>A: C>64C74A F8C7 H>D 0B
0 C40< 8B 0 E4AH 8<?>AC0=C 502C>A 8= 45542C8E4;H
<0=068=6 A#*. There are a number of ALS clinics
across Canada that care for patients with ALS through
an interdisciplinary team approach. You very well may
have received your definitive diagnosis of ALS in one
of these clinics. In other communities, the same
healthcare professionals may be available in private
practice or through homecare community programs.
Contact information for 2;8=82B 0=3 24=CA4B 8=
C0=030 B?4280;8I8=6 8= A#* <0=064<4=C 20= 14
5>D=3 >= >DA F41 B8C4, FFF.0;B.20, >A 1H 20;;8=6
C74 A#* *>284CH >5 C0=030 0C 1-800-267-4257.
Even if you visit an ALS clinic for periodic team fol-
low-up and assessment, you will still need services
from healthcare professionals in your community.
Please ask the clinic coordinator at the ALS centre
where you go for care to send your family doctor a
copy of the CD-ROM, G.$d -( ALS Ca+ !(+ P+$&a+2
Ca+ P#2,$c$a',. If you have chosen not to go to a spe-
cialty ALS clinic/centre for care, please contact your
local Provincial ALS Society and ask them to send this
resource to your doctor on your behalf.
E5542C8E4 2><<D=820C8>= 14CF44= 740;C720A4 ?A>-
54BB8>=0;B 0=3 C748A ?0C84=CB 8B 0 :4H 502C>A 8= 64C-
C8=6 C74 14BC 20A4. To help you get the most out of
your healthcare visits, see tips provided in The How
To Health Guide produced by the Health Charities
Coalition of Canada at http://www.als.ca/en/publica-
tions-and-resources/care-resources/how-health-guide.
$?6:.?F C.?2 / F.:69F D<0A<?
Your doctor's tasks may include the following:
Explaining the diagnosis and possible progression of
ALS;
Making necessary referrals to, and consulting with,
other healthcare providers to best manage your care;
Discussing course of action you wish to take if respi-
ratory failure occurs
-#)& HEA(HCA&E (EA!
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activities in a safe and efficient manner. This is accom-
plished through the following:
teaching by demonstration;
ongoing assessment/evaluation;
ordering appropriate equipment in a timely manner;
preventing complications;
utilizing community resources;
providing psychological support.
The OT is generally more concerned with fine-motor
control and how movement will affect function. The
OT's tasks may include the following:
assessing fine-motor functional abilities (for example,
hand use);
evaluating positioning and seating requirements;
assisting in choosing and accessing suitable augmen-
tative mobility and communications strategies and
any required assistive devices;
giving instruction to the person with ALS, family
members, and caregivers on exercise, positioning,
correct body mechanics for lifting and transferring,
and use of assistive devices;
teaching energy conservation and time management
techniques;
providing information about modifications to home
and other environments to enhance mobility and
safety.
The PT is generally more concerned with gross-motor
function and anatomical impairments associated with
abnormal movement. The PT's tasks may include the
following:
providing a detailed analysis of abnormal movement
(for example, gait analysis-how you walk);
optimizing the person's strength, function, and com-
fort;
designing and monitoring a therapeutic exercise regi-
men when appropriate;
assisting with breathing management;
providing training in energy conservation and time
management techniques;
preventing needless purchases of unsuitable equip-
ment;
making a home assessment.
"2B?<9<46@A
Your doctor will refer you to a neurologist, a specialist
in diseases of the nervous system who can confirm a
diagnosis of ALS. Between them they will:
outline types of treatment options available;
encourage the setting of short-term goals;
help you preserve a positive self-image and maintain
your morale;
work with you to identify specific needs and concerns
and refer you to therapists who may be able to find
solutions.
$.996.A6C2 C.?2 D<0A<?
A doctor with special training in pain management and
other care aimed at improving comfort and quality of
life for patients with incurable diseases is a palliative
care specialist. One may be a member of your ALS
team. If there is no palliative care specialist as a
regular member of the clinic team you see at the ALS
clinic/centre, you may eventually consult with one at
some point in your disease. This type of doctor is also
well trained in talking with patients about care deci-
sions, including end-of-life issues.
"B?@2 C96;606.;
A nurse clinician generally formulates nursing goals
after analyzing assessment data, then draws up and
implements a care plan. Other nursing functions may
include the following:
explaining terminology and techniques;
teaching skills and providing demonstrations;
evaluating skill levels and reviewing procedures;
addressing questions and concerns;
ensuring the comfort of people living with ALS;
encouraging and promoting decision-making by the
people with ALS and their families;
liaising with community organizations;
making referrals;
limiting the development of complications;
providing nursing interventions if problems arise.
#00B=.A6<;.9 (52?.=6@A, $5F@6<A52?.=6@A,
.;1 $5F@6.A?6@A
The occupational therapist (OT) and the physical ther-
apist/physiotherapist (PT) develop strategies that
enable people with ALS to continue to carry out daily
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C40< 8B 0 E4AH 8<?>AC0=C 502C>A 8= 45542C8E4;H
<0=068=6 A#*.
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The physiatrist, a medical doctor specializing in physical
and rehabilitative medicine, generally evaluates the
extent of disability and functioning, and gauges the
level of muscle function you still have (residual level).
On the basis of these findings, treatment plans may be
designed. Other functions may include:
recommending preventive and supportive treatment;
preventing complications;
determining which diagnostic tests are necessary;
helping maintain maximum function and quality of
life;
consulting with therapists concerning orthoses and
equipment.
D62A6A6.;
A dietitian's primary considerations are to keep your
quality of life as high as possible by maintaining safe
and adequate nutrition and hydration, in order to pre-
vent life-threatening nutritional deficits from develop-
ing. The dietitian may assess or evaluate the following:
functional abilities (ability to self-feed or to administer
tube feedings);
nutritional status and present intake.
The dietitian may recommend the following strategies:
appropriate changes in food texture and consistency;
appropriate methods of food preparation;
substitutions for hard-to-manage foods;
meals of a manageable size and frequency;
strategies for maximizing nutritional intake.
&2@=6?.A<?F (52?.=6@A .;1 &2@=6?<9<46@A
The respiratory therapist generally devises strategies to
optimize remaining muscle function and reduce dis-
comfort, and institutes a program of chest care if nec-
essary. In some locations, the physiotherapist may be
the person who helps you with exercises to promote
airway clearance and cough techniques. Other tasks
may include:
evaluating pulmonary function status;
maintaining pulmonary hygiene (airway clearance);
providing suggestions for managing decreasing
breathing function;
offering information on body positioning, energy con-
servation, relaxation, and compensatory techniques to
improve breath support for nutrition and for speech;
setting up a home ventilation program if appropriate;
making suggestions about a course of action to take
when respiratory failure occurs.
The respirologist is a medical doctor who specializes in
care for the respiratory system. During the course of
ALS you may be referred to or seen by a respirologist
in the event of a respiratory infection, or when you
decide you are interested in mechanical ventilation.
'=2205-.;4B.42 $.A5<9<46@A ('$)
A speech-language pathologist provides advice on tech-
niques and strategies to allow the person with ALS to
continue to communicate throughout life. Some func-
tions of the speech-language pathologist may include:
evaluating the individual's motivation and potential for
learning new techniques;
evaluating functional abilities, such as oral motor
function, cognitive-linguistic function, augmentative
communication function, and swallowing function;
determining the most efficient communication func-
tion;
training people with ALS and family members in tech-
niques of effective communication and energy con-
servation, and safe eating, drinking and swallowing
techniques.
'<06.9 +<?82?
In addition to other healthcare professionals, you may
be referred to a social worker. The social worker's tasks
include both practical assistance as well as emotional
support to help people with ALS and their families
cope with everyday life. The social worker offers:
emotional support and counselling to the person with
ALS and to family members and refers to the appro-
priate service agency if ongoing support is required;
an understanding of the emotional impact of an ALS
diagnosis and assists with the psychological adjust-
ments that come with this diagnosis;
information about available community resources and
acts as an advocate to assist people in accessing these
resources;
information on legal and financial issues and assists
people to access these resources in their own commu-
nities; and
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C0=0380= ABB>280C8>= 5>A '0BC>A0; 'A02C824 0=3
E3D20C8>=
Phone: (902) 820-3085 (Halifax)/(866) 442-2773
Fax: (902) 820-3087
E-mail: office@cappe.org
C0=0380= ABB>280C8>= >5 *>280; .>A:4AB
Phone: (613) 729-6668
Fax: (613) 729-9608
E-mail: casw@casw-acts.ca
C0=0380= ABB>280C8>= >5 *?4427-#0=6D064
'0C7>;>68BCB 0=3 AD38>;>68BCB
Phone: (800) 259-8519
Fax: (613) 567-2859
E-mail: caslpa@caslpa.ca
C0=0380= '7HB8>C74A0?H ABB>280C8>=
Phone: (416) 932-1888 or 1-800-387-8679
Fax: (416) 932-9708
E-mail: information@physiotherapy.ca
C0=0380= *>284CH >5 )4B?8A0C>AH +74A0?8BCB
Phone: (613) 731-3164/ (800) 267-3422
Fax: (613) 521-4314
E-mail: csrt@csrt.com
d84C8C80=B >5 C0=030
Phone: (416) 596-0857
Fax: (416) 596-0603
www.dietitians.ca
help with setting short-term and long range goals and
making plans that will meet future care needs.
$.@A<?.9 C.?2 +<?82?
A minister, priest, rabbi, chaplain or other pastoral care
worker may perform the following functions:
listening to and empathizing with those who want to
vent concerns;
assisting in making decisions;
giving spiritual support during emotional or physical
crises;
acting as an advocate for those who have no voice;
reassuring people with ALS that their lives have
meaning and facilitating spiritual reflection;
encouraging people with ALS to discover their per-
sonal strengths;
encouraging people with ALS to recapture positive
experiences from the past by recall or reminiscence;
celebrating the individual's humanity and worth;
listening to concerns about death and dying; and
arranging for and conducting services when appropri-
ate.
There may be other healthcare professionals on your
ALS team such as an assistive technology expert, wheel
chair seating expert, psychologist, or gastroenterologist.
The above mentioned professionals comprise the core
members of an interdisciplinary ALS care team.
A business card holder page has been included in the
Ma'.a% to help you keep the contact information for
your healthcare team members handy when you have
questions or need to make appointments.
$?<32@@6<;.9 A@@<06.A6<;@
To learn more about some of the professions
described, contact the professional associations listed
below:
C0=0380= ABB>280C8>= >5 &22D?0C8>=0; +74A0?H
Phone: (613) 523-CAOT (2268)/ (800) 434-CAOT
(2268)
Fax: (613) 523-2552
www.caot.ca
C7>:8=6
Those who develop swallowing problems are at risk
for choking. Because this could become dangerous,
get advice from your doctor and other healthcare
professionals about how to address this problem.
There are things you can do regarding how you eat
and what you eat that can lower the risk of getting
food stuck in your throat. If you are beginning to
notice problems with swallowing, see your doctor
for a referral for a swallow study.
C7>:8=6 8B 0= 0;0A<8=6 BH<?C><. $0=H ?4>?;4
0BBD<4 C70C 27>:8=6 C> 340C7 8B 7>F ?4>?;4
F8C7 A#* 384. +78B 70B 144= B7>F= C> 14 50;B4.
C7>:8=6 8B 0 <0=06401;4 BH<?C><, 0=3 <>BC
?4>?;4 F8C7 A#* 384 ?40245D;;H.
BD8;3-D? >5 *0;8E0 0=3 dA>>;8=6
People with Bulbar ALS often develop an excessive
drooling problem because they have difficulty swal-
lowing the normal production of saliva. An increase
in the actual production of saliva may occur as a
side-effect of tube feeding diets. Your doctor can
offer various medications to limit saliva production
to reduce this problem.
*0;8E0 0=3 $D2DB 8= C74 #D=6B
Should muscles involved in breathing (diaghram) and
coughing (abdominal and intercostals) weaken, it
becomes difficult to cough up saliva and mucus. If
you are having this problem, see your doctor as soon
as possible. There is a technique for freeing saliva and
mucus from the throat and lungs, which involves lying
on a slope with your head on the down side so that the
saliva flows down when the technique is applied. This
technique should be taught by a trained professional
who is familiar with and can demonstrate the correct
position and procedures. This is especially important if
you are experiencing shortness of breath.
See Ada)-$'" -( S0a%%(0$'" P+(b%&, a'd
Ma$'-a$'$'" G((d N.-+$-$(' sub-section.
See Ma$'-a$'$'" O+a% Ha%-# sub-section.
See Ada)-$'" -( S0a%%(0$'" P+(b%&, a'd
Ma$'-a$'$'" G((d N.-+$-$(' and Ada)-$'" -(
C#a'", $' S)c# a'd Ma$'-a$'$'"
C(&&.'$ca-$(' sub-sections.
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Although there are no known medications that will
cure ALS, there are medical treatments, therapies,
and assistive devices which help people maintain
active and independent lives for as long as possible.
These 38B40B4 <0=064<4=C 0=3 030?C8E4 BCA0C4-
684B ?A><>C4 C74 F4;;-148=6 >5 1>C7 H>D 0=3
H>DA 50<8;H. Communicate openly with your care-
givers, therapists, and doctors about your symptoms
and challenges so that you can work together to
find solutions that work best for you in a timely
manner.
Some of the problems associated with ALS and the
strategies for managing them are discussed in more
detail in the additional topic specific sub-sections.
When you decide you are ready to learn more about
these topics or you are experiencing problems in
these areas, the information will be available for
you.
!<BA5 .;1 (5?<.A $?</92:@
*?40:8=6 0=3 *F0;;>F8=6
As mentioned before, when the onset symptoms of
ALS are speaking or swallowing problems, it is
known as Bulbar ALS. For other people with ALS,
these problems don't generally occur until the later
phases of the disease.
People with Bulbar ALS are vulnerable to signifi-
cant weight loss, and should consider a feeding tube
in the earlier phases of the disease. Generally
speaking, when you have lost 10-15% of your "nor-
mal" body weight, your doctor should talk to you
about the option of a feeding tube while you are
fairly healthy.
For those who do lose their ability to speak, there is
now a range of communication aids available from
low-tech to very high-tech.
#*E&*IE+ #F A' DI'EA'E !A"AGE!E"( I'')E'
Also, a suction unit can help remove saliva from the
mouth and prevent it from flowing back into the lungs.
C>D678=6
Coughing can occur for more than one reason. For
example the lungs can clear a passage by automatically
and unexpectedly forcing out air, while at the same
time irritations in the throat due to blockage can also
cause unexpected coughing. People with ALS may
develop weak coughs due to breathing muscle weak-
ness which makes it difficult to effectively clear airways
that may be blocked. Talk to your doctor or respirato-
ry therapist about techniques to produce an effective
cough. If you do not have a respiratory therapist, your
physiotherapist may be able to assist you.
'F:=A<:@ A5.A A3320A D.69F 6C6;4
E0C8=6
Continue to feed yourself as long as possible.
However, if you feel too weak to manage a whole meal
by yourself, or have trouble with muscle control to
operate knives, forks and spoons, ask for help from
your caregiver. For instance, your caregiver could
helpa lot just by cutting your food for you. An occu-
pational therapist can also help by showing you how to
adapt your eating utensils so they are easier to grip, or
adjust the height of your eating surface so you have
less distance between the plate and your mouth.
When swallowing difficulties arise, or jaw muscles
involved in chewing are weakened or stiff, your dieti-
tian will be able to help you with how to eat, what to
eat, and how to modify food textures to make eating
easier and safer. When difficulty with eating is accom-
panied by weight loss, you should talk to your doctor
about the possibility of tube feeding.
See Ada)-$'" -( C#a'", $' B+a-#$'" a'd
Ma$'-a$'$'" L.'" Ha%-# sub-section.
C>=BC8?0C8>=
Constipation may occur as a result of inactivity or lack
of adequate fibre or water in the diet. For those using
tube feeding, it may be especially difficult getting suffi-
cient fibre and hydration. In either case, if you are
experiencing constipation, ask a dietitian about ways to
add more fibre to your diet. If adding fibre to your
diet doesn't solve the problem, see a doctor about an
appropriate medication.
f0C86D4
Fatigue occurs as a result of weakening muscles, sus-
pected higher metabolic functioning in ALS patients,
and declining breathing function. One of the first
ways you can combat fatigue is to conserve your ener-
gy for really important tasks or activities that you really
enjoy. An occupational therapist can plan a daily rou-
tine with you that will help you to adapt to life with
ALS. Some tasks can be done in different ways that
will save some of your energy. There are a large num-
ber of aids that can help you to do the things you now
find difficult. It is essential that you consult your thera-
pist before buying an aid to avoid expensive mistakes.
5 H>D C4=3 C> F0:4 D? 8= C74 <>A=8=6 544;8=6 E4AH
50C86D43 0=3 ;867C 740343, 38B2DBB C78B F8C7 H>DA
3>2C>A ?A><?C;H as you may not be breathing well
enough in the night, thus requiring a respiratory func-
tion evaluation and some airway management strate-
gies.
G4CC8=6 C> *;44? 0=3 '>B8C8>=0; 'A>1;4<B
Some people with ALS may become immobile. People
who are unable to move get very uncomfortable lying
in the same position while sleeping for several hours.
There are special beds, which help an immobile person
sleep without being manually turned during the night.
A satin bottom sheet and nightwear also facilitates
turning.
Getting to sleep can also be problematic for some peo-
ple. Talk to your doctor about relaxation exercises you
could use to try to get to sleep. If medication is
required to help you sleep, be mindful that use of
See Ada)-$'" -( S0a%%(0$'" P+(b%&, a'd
Ma$'-a$'$'" G((d N.-+$-$(' sub-section.
See Ada)-$'" -( C#a'", $' B+a-#$'" a'd
Ma$'-a$'$'" L.'" F.'c-$(' and Ada)-$'" -(
S0a%%(0$'" P+(b%&, a'd Ma$'-a$'$'" G((d
N.-+$-$(' sub-sections.
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sedatives and tranquillizing medication depresses respi-
ration and should be used cautiously by those who may
have impaired pulmonary function.
,B4 >5 A;2>7>; 0=3 $43820C8>=
If you are taking any medications, be very careful
about drinking alcohol. The combination of alcohol
and many medications can cause serious problems.
This is not always predictable. For example, alcohol
with some medications, such as a simple cough remedy,
even taken several hours apart, can restrict a person's
ability to breathe, and at the same time cause a cough-
ing spell, both lasting for hours. Also, reduced motor
control can be accentuated by alcohol. If you like to
have the occasional alcoholic beverage, talk to your
doctor about the specific risks that may be involved.
,=2>=CA>;;01;4 E<>C8>=B
Uncontrollable emotions such as excessive laughing or
crying may be experienced by some people with ALS.
This is called emotional lability or pseudobulbar affect
(PBA), and can be particularly frustrating. PBA is a
condition that affects 15-45 per cent of people with
ALS. PBA is characterized by sudden, involuntary out-
bursts of laughing or crying that do not match the
individual's actual feelings. The reactions may be mis-
understood by other people complicating matters.
PBA usually catches people by surprise when it first
happens; however, over time many people learn how to
modify these emotional outbreaks and how to avoid
some of the situations that trigger them. If you are
experiencing this problem, talk to your doctor about
medications that may help control it. The FDA recent-
ly approved a drug for PBA, called Nuedexta. It is a
mixture of the cough suppressant dextromethorphan
and quinidine, which is used to treat heart arrhythmias.
It is expected to be available by prescription in early
2011. People with PBA may also be helped by antide-
pressant drugs.
C>6=8C8E4 0=3 B470E8>DA0; C70=64B
Until fairly recently, it was assumed that ALS did not
affect thinking. However, researchers have found that
See Section 5 A,,$,-$/ E*.$)&'- section and
Ada)-$'" -( B+a-#$'" C#a'", a'd Ma$'-a$'$'"
L.'" F.'c-$(' sub-section.
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changes in the way one thinks, perceives, and processes
information (cognition), and behaves will occur in
some patients with ALS and sometimes early in the
disease before an ALS diagnosis has been made. This
is not to say these changes will occur in all persons
with ALS and the exact nature of the changes can vary
from person to person. You and your family can better
identify any such changes and discuss effective man-
agement strategies with your ALS healthcare team
members if you are educated about them. Proper
management may lessen the impact of cognitive and
behavioural changes on daily living and coping with
ALS.
The following may indicate changes in thinking:
Reduced reasoning, insight, and problem-solving
ability
Deficits in verbal fluency (reduced word recognition
and word choice)
Some of the following symptoms of personality and
behavioural changes may be experienced:
Apathy
Loss of inhibition
Restlessness or overactivity
Social inappropriateness
Mood swings
Compulsive rituals such as repeatedly dressing, using
the bathroom, eating, hoarding, etc.
For more information about cognitive, personality, or
behavioural changes in ALS, consult with an ALS
specialist.
!</696AF
!>8=C 0=3 $DB2;4 '08=
Persons with ALS who lose significant muscle function in
areas that involve joints may end up not using those joints
to their full capacity. Lack of use can cause stiffness and
joint pain. )0=64->5-<>C8>= 4G4A28B4B 0A4 34B86=43 C>
?A4E4=C C74B4 9>8=C ?A>1;4<B. Careful attention to your
exercise regime, whether active (doing it yourself) or pas-
sive (with assistance), will eliminate much potential joint
pain. However, there are still a number of common pains
that can develop. If your arms are weak and you allow
them to hang unsupported from the shoulder, there is a
tendency for the shoulder joint to become painful. It is
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ous harm to you such as a head injury.
d85582D;CH GA8??8=6 0=3 H>;38=6
Some people with ALS lose strength in the hand and wrist
muscles, losing the ability to manage small hand move-
ments such as holding a pen to write, or cutlery to eat,
turning a key to start a car, or turning a handle to open a
door. There are a variety of products designed to assist
you with weakened grip strength.
If these weaknesses continue to develop, you can lose
your ability to hold even lighter weight articles. Getting
dressed and undressed becomes more and more difficult,
and then impossible to do alone. As this process occurs,
dressing can be made easier with Velcro fasteners, elastic
waistbands, and other features that make clothing easier to
put on and take off.
Cold or hot hands can weaken the grip of most people.
For persons with ALS, however, this is even more pro-
nounced. If your fingers get cold you will probably be sur-
prised by how much harder it is to do such things as undo
buttons, or turn a doorknob. An occupational therapist
will be able to help you with specific strategies. Some OTs
specialize in hand movement and therapy.
As ALS progresses, there are various types of equipment
available to assist you with your mobility needs. With
respect to moving about, some may need a cane or a walk-
er at first, then a manual wheelchair, followed by a power
wheelchair to assist in maintaining a certain level of inde-
pendence. Also, there are raised chairs and toilet seats
which are easier to get up from, and portable hoists to
move a person Regarding eating, there are eating utensils
that can assist and increase independence - cutlery with
large easy-grip handles, non-slip mats and special plastic
plates. C7>>B8=6 C74 14BC 0BB8BC8E4 4@D8?<4=C 5>A H>DA
B8CD0C8>= 8=E>;E4B <0=H 2>=B834A0C8>=B, 8=2;D38=6 0=
D=34ABC0=38=6 >5 ;>=64A-C4A< =443B. It is advised that
you get advice from a healthcare professional such as an
occu.pational or physiotherapist before acquiring assistive
equipment.
helpful to support weak arms whenever possible on pil-
lows, armrests or on a table.
A shoulder sling will also give the arm some support and
decrease strain on the shoulder joint while you are walking.
Hip pain can result from prolonged sitting in a sagging
seat or chair. A firm seat on a regular chair or wheelchair
will relieve strain on the hip joints.
#46 0=3 f>>C *F4;;8=6
If your lower limb mobility is reduced, you may experi-
ence mild leg and foot swelling, which is best reduced by
moving the toes and ankle, if possible, and by elevating
the leg and/or using an elastic stocking. Talk to a nurse
about how best to address this problem.
$DB2;4 CA0<?8=6
Cramps are not uncommon in people with ALS. They can
be alleviated to some extent by keeping the affected mus-
cle warm and by stretching it or having your caregiver
stretch it until the pain is eased. Severe or frequent cramps
should be discussed with your doctor. There are a number
of medications available to reduce cramping.
C70=64B C> '>BCDA4
If the muscles that maintain your upward posture weaken,
you may have discomfort in your lower back, neck and
shoulder blade region. Special cushions, chair backs, lum-
bar (lower back) and cervical (neck) rolls are available to
help you to maintain correct sitting posture. It may be nec-
essary for you to sit in a reclined position or to use a neck
collar to maintain proper positioning. Your occupational
therapist can assist you in choosing the right device.
d85582D;CH .0;:8=6
If you experience weakening leg and ankle muscles and
unexpected fatigue, tripping and falling become problems.
When these problems occur you should consider using leg
and ankle splint devices (0=:;4 5>>C >AC7>B4B-Af&B) that
provide added support to weakened muscles, or a cane or
walker as soon as you are threatened by unexpected falls.
Some people are self-conscious about having to use walk-
ing aids, or see it as an announcement that their condition
is worsening. These are completely normal reactions.
However, you must also think about preventing injuries
that will inhibit your independence further, or cause seri-
See Section 5 A,,$,-$/ E*.$)&'- and
Section 4 Ada)-$'" -( C#a'", $' M(b$%$-2 a'd
Ma$'-a$'$'" I'd)'d'c sub-section.
'2EB.9 C<;02?;@
Sexuality and intimacy are basic aspects of human life.
Sexual desires and abilities may not be affected by the dis-
ease process, except for the physical limitations imposed
by physical discomfort, muscle weakness, fatigue or low
energy levels, or medication side-effects. A person with
ALS may worry about not being able to please a healthy
partner. For men, anxiety may cause impotence.
Other factors that may contribute to unsatisfactory sexual
relations are:
Adjustment to assistive devices or support systems
Dealing with everyday survival
Negative self-image
Reduced independence with self-grooming
Reduced communication ability
Limited mobility
Changes in physical appearance
Altered role
Emotional state
Functional level
You and your partner may want counselling with an empa-
thetic professional to openly deal with mutual concerns
and expectations. If you are both willing, you could
explore different sexual techniques, role flexibility, and
alternative methods of sexual expression.
The following suggestions may prove helpful in dealing
with sexual concerns:
Using techniques, assistive devices, and
positioning to accommodate
increasing muscle weakness and
other symptoms of ALS
Identifying techniques and
assistive devices that enable
you to maintain good groom-
ing and personal cleanliness
Maintaining communication
(the open expression of affec-
tion and need is important.)
Respecting the boundaries of the other
partner
Altering the living environment to provide adequate pri-
vacy and reduce embarrassment
Scheduling of "adult time" if there are young children in
the family
Wearing street clothes rather than night attire whenever
possible during the day to emphasize normality and
reduce playing the sick role
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Re-focusing interests and energies into other areas
Partners should realize that touching is as important as
sexual performance in reducing tension and maintaining
emotional intimacy. Preservation of personal integrity
should be an overriding concern. If you have any ques-
tions or concerns, speak with your doctor and request a
referral to a sexual health clinician in your area. For more
information refer to the ALS pamphlet on Sexuality,
Intimacy and Chronic Illness. It can be found on the ALS
website www.als.ca/publications-and-resources/als-fact-
sheets.
C<:=92:2;A.?F .;1 A9A2?;.A6C2 H2.9A50.?2
(CAHC) .;1 ".AB?.9 H2.9A5 $?<1B0A@ ("H$)
In the search for better health and well-being, the healthy
as well as those managing an illness for which there is no
cure or limited treatment often look to complementary
and alternative health care (CAHC) and natural health
products (NHPs) for answers.
C><?;4<4=C0AH 0=3 0;C4A=0C8E4 740;C720A4 (CAH)
A454AB C> ?A02C824B C70C 2><?;4<4=C <08=BCA40<
<43828=4 1H 2>=CA81DC8=6 C> 0 2><<>= F7>;4, 1H B0C-
8B5H8=6 0 34<0=3 =>C <4C 1H 2>=E4=C8>=0; 0??A>027-
4B. Massage and meditation are CAH practices that have
become quite common in chronic disease management.
%0CDA0; 740;C7 ?A>3D2CB (%H'B) A454A C> 74A1B,
E8C0<8=B, <8=4A0;B, 4BB4=C80; 50CCH 0283B, 0=3
7><4>?0C784B.
There is very little scientific evidence to sup-
port the safety and effectiveness of
many CAHC and NHP claims and
in some cases may be detrimen-
tal to a person with a disease
such as ALS, or anyone on
any medication.
However, there are certainly
legitimate practices, such as mas-
sage and supplement use (e.g., vita-
min E) that may have a positive effect
on feelings of well-being. The ALS Society is
supportive of you and your doctor working together to
find what works best for you. 5 H>D 0A4 B448=6 0=
0;C4A=0C8E4 ?A02C8C8>=4A, ;4C H>DA <43820; 3>2C>A :=>F
0B H>D =443 C> C0:4 20A4 C70C =>C78=6 8=C4A54A4B F8C7
C74 <43828=4B H>D 0A4 C0:8=6 C> <0=064 A#* BH<?-
C><B.
No matter how desperate you are to find a cure for ALS,
It is also recommended that
you and your doctor read the
f02C *744CB -A#*/$%d:
+74 d0=64AB >5 ,=?A>E4= +74A0?84B,
written by Dr. Andrew Eisen and
%0CDA0; H40;C7 'A>3D2CB-$0:8=6 *4=B4 >5
C><?;4<4=C0AH 0=3 A;C4A=0C8E4 $43828=4B,
both listed in the Resource section of the
Manual.
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AA><0C74A0?H:
Aromatherapy is a massage that involves the use of fra-
grant oils, which penetrate the skin, adding another sense
of pleasure to relaxation.
CA0=8>-*02A0;:
A cranio-sacral massage is a very light and gentle massage
of the back of the head and neck. It is non-invasive and
very soothing.
+4=B $0278=4:
A Tens Machine stimulates muscles through electronic
impulses, and is often used by physiotherapists. The cost
of most massage treatments ranges between $40 and $75
for sessions up to an hour in length. Most of these treat-
ments are not covered by provincial healthcare plans, but
may be covered in whole or in part by private or group
insurance if they are prescribed and/or delivered by a reg-
istered therapist.
$438C0C8>=
Meditation is a way to relax and revitalize both mind and
body, and can be practised in many ways. Technically, medi-
tation is deliberately entering into an inner silence and still-
ness for a certain period of time, usually 15-20 minutes. It
has been practised over the centuries by many different cul-
tures and in many different ways. Referring to the results of
researching meditation in his book The Relaxation
Response, (Avon Books, N.Y.), Dr. Herbert Benson writes
that meditation creates an overall awareness of relaxation
and a feeling of well-being. Breathing and heart rate slow
down, blood pressure drops, and there is an increase of
healing alpha waves from the brain. In other words, medi-
tation can reduce stress, and relax muscles.
Meditation techniques can be divided into two categories.
One type of meditation involves concentrating on some-
thing, such as your breathing, a candle flame, a religious
object, or even rolling surf, while peacefully and silently
repeating a mantra, a special word or sound. Any word
that contributes to inner peacefulness can work. The other
type of meditation also involves repeating a mantra, but
the objective is to relax your mind entirely. When thoughts
come into your mind, you try to relax, observe the
thoughts and let them flow, without participating in the
thought process. For most people, this takes practice.
be very wary of unconventional treatments that make
claims of being able to "cure" or "reverse ALS." Usually
the people offering these "cures" charge thousands and
thousands of dollars leaving families left with no money
to pay for essentials or for needed traditional symptom
management treatments. Unfortunately, many of the peo-
ple pushing these claims are making a lucrative living at the
expense of people who are looking for hope.
The following information provided takes a look at mas-
sage, meditation, and NHPs in general terms.
$0BB064 0=3 +>D27 +74A0?84B
Touch therapies can be very relaxing and comforting for
people with ALS. They can warm up limbs, which often
feel cold because of inactivity, low circulation and
decreased muscle mass. Though touch therapies are usual-
ly given by a caregiver or therapist, self-massage can also
be very beneficial. It is important to talk to your doctor
before receiving massage therapy.
The easiest touch therapy to learn is massage. For the
most beneficial massage, body oil is used to lubricate the
skin, which aids in soothing and relaxing the muscles.
Massage involves systematically stroking, kneading and
pressing the soft tissues of the body with fingers and the
palm of the hand, working on the muscles, ligaments and
tendons. A complete massage covers the entire body,
inducing a state of warmth and relaxation. However a
massage of parts of the body, such as arms, legs or shoul-
ders is also beneficial and will help improve circulation.
*780CBD:
Shiatsu is a Japanese system of touch therapy and is given
using fingers, thumbs and hands. The forearm, knees, and
feet can also be used, applying pressure to specific points
on the body.
)45;4G>;>6H:
Reflexology is based on the theory that pressing and mas-
saging certain points in the feet will affect the whole body
and induce relaxation.
C0DC8>=: While having ALS is not a contraindication
to massage therapy, modifications in technique may be
required and should be done so under medical consul-
tation.
alternative medicines. Scientifically, little is known about
the effect of alternative medicines on the human body.
%4F )46D;0C8>=B 8= C0=030:
AB >5 !0=D0AH 2004, =4F %H' )46D;0C8>=B D=34A
H40;C7 C0=030, 34B86=43 C> 10;0=24 C74 =443 5>A
B054CH 0=3 4558202H F8C7 2>=BD<4A 27>824. The new
regulations stipulate that every NHP sold in Canada must
be issued a product licence, which registers it with Health
Canada. The new regulatory framework incorporates an
evidence-based approach that assesses products for safety
and effectiveness.
The *C0=30A3B >5 EE834=24 developed are clearly
defined criteria concerning the amount of evidence
required to support each claim (five levels ranging from
"well-designed systematic reviews and meta-analysis of
randomized controlled trials (RCT) or at least one well-
designed RCT" to "references to traditional use"). The
stronger the claim, the stronger the supporting evidence
needs to be. As a consumer, you will now be able to tell
what level of evidence is available which will help inform
your choice. Talk to your doctor about the claims a prod-
uct is making in terms of what it says it can do for you.
Your doctor can help you decide if it
could be harmful or could
negate the effect of other med-
ications you are taking. Also con-
sider the cost of the product. If it is very expensive, but
there is little if any scientific evidence to support the
claims, you may want to reconsider.
5 H>D 58=3 B><4C78=6 C70C 74;?B
H>D 544; 14CC4A >A <0:4B H>DA ;854 0
;8CC;4 18C 40B84A, ;4C H>DA 3>2C>A :=>F
01>DC H>DA ?A>6A4BB. H4 >A B74 <0H
F0=C C> BCD3H 8C 5DAC74A, >A B70A4 8C F8C7
>C74A 0??A>?A80C4 ?0C84=CB.
Before starting to meditate it is usually best to let other
people in your house know that you don't want to be dis-
turbed for 20 minutes. Many meditation teachers suggest
that, for the best results, meditation should be done twice
a day, for about twenty minutes, with your eyes closed.
When you think about 20 minutes is up, gently open your
eyes and look at your watch. Two common problems for
those new to meditation are being unable to relax as their
minds are so full of thoughts and/or when they are finally
relaxed, they fall asleep.
It takes daily practice and time to develop the ability to
achieve a state of conscious relaxation. Sometimes quiet,
peaceful music can help the mind calm down, but in later
phases of meditation that may be too distracting.
There are several other techniques to help clear the mind,
and achieve a state of relaxation, including music therapy
and visualization therapy. Books on this subject can pro-
vide patients with knowledge of these techniques, instruc-
tions, exercises and many hours of quiet pleasure. Your
nurse, social worker, occupational therapist, or other men-
tal health professional may also be good resources for
information and training.
%0CDA0; H40;C7
'A>3D2CB (%H'B)
Because vitamins, herbs and
other so-called complementary or alternative medi-
cines (natural health products) have become so popular
over the last few years, it is appropriate to say a few things
about these potential remedies in the context of research.
People with ALS can be particularly attracted to these
remedies either because drug trials so far have been unsuc-
cessful, or because of the perception that alternative medi-
cines are natural.
.78;4 4GC4=B8E4 0=3 A86>A>DB;H 2>=CA>;;43 A4B40A27 8B
3>=4 5>A ?70A<024DC820; 3AD6B 145>A4 C74H 20= 6> C>
<0A:4C, <D27, <D27 ;4BB A4B40A27 8B 3>=4 >= %H'B
F8C7 C74 4G24?C8>= >5 E8C0<8=B, F7827 70E4 144=
4GC4=B8E4;H A4B40A2743. On the other hand many NHPs
have been used by some cultures for hundreds and even
thousands of years. Stories circulate about people who
have been cured by these medicines. Also, it is well known
that animal and plant by-products have provided the basis
for many successful drugs. Unfortunately, the hundreds of
millions of dollars required to thoroughly test
pharmaceutical medicines are not available to test
For more information on natural health products, see
the f02C *744C--%0CDA0; H40;C7 'A>3D2CB.
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veryday activities, such as getting out of bed,
sitting down to dinner, carrying in bags, are
often taken for granted. As ALS progresses,
and motor neurons die, these simple actions can
become more difficult and require more effort.
Working with an occupational therapist and a physio-
therapist familiar with ALS will help you come up with
ways to stay as functionally mobile as you can to con-
tinue to accomplish the everyday activities you are
accustomed to doing.
Mobility strategies include exercise and mobility aids.
These strategies aim to promote physical comfort, pre-
vent injury, and help maintain independent living.
Caregivers will also benefit from education around safe
handling and transfer techniques.
As motor neurons die, muscles become weaker and
stiffer. As a result, someone with ALS will become
less mobile in terms of moving their head and limbs.
When it is difficult to move body parts, the associated
joints become stiff which can be quite painful.
Therapeutic exercise can help relieve discomfort.
Recreational exercise can also help with physical symp-
toms as well as boost one's enjoyment of living.
It is important to realize that exercise will not strength-
en muscles that have been weakened by ALS. Once the
supply of motor neurons that control a particular mus-
cle has degenerated, it cannot be regenerated by exer-
cise or anything else.
It was previously believed that
exercise was harmful for
people with ALS due to
damage from overuse. We
now know that exercise can be
very helpful. Exercise programs should be
recommended by an occupational therapist or physical
therapist to ensure the right kind of exercises and how
much is right for you. Exercise should not cause pain
and excessive fatigue or shortness of breath.
Four types of exercise may be considered for people
with ALS.
1. f;4G818;8CH CA08=8=6 - stretching and range of
motion exercises (ROM)
prevents contractures and frozen shoulder
decreases spasticity
stimulates circulation
improves joint lubrication
2. *CA4=6C74=8=6 moderate resistance exercises, for
example, Thera-Band
may decrease disuse atrophy
may maintain mobility and function longer
3. A4A>182 exercises for example stationary cycling
and walking)
may slow deterioration
reduces spasticity
4. B0;0=24 CA08=8=6
may reduce falls
(Dal Bello-Haas et al., 2007; Drory et al., 2002;
Krivickas, 2003)
The purpose of exercise for people with ALS is:
To maintain or improve the strength and flexibility of
muscles not affected by ALS
To maintain the flexibility of muscles that have been
affected
To maintain the flexibility of joints in the neck, trunk
and limbs
To help manage pain and stiffness due to spasticity
and increase tone
&.;42-<3-!<A6<; (&#!) EE2?06@2@
A person with ALS needs to
move each affected joint
through a series of range-
of-motion (ROM) exercises
every day to prevent joint stiffening.
Exercise will help to keep your body as flexible as pos-
sible and your joints mobile. ROM exercises are usually
done systematically, meaning that the joints of one
limb are exercised in a particular order before the next
limb is exercised and so on.
The objective of ROM exercises is to move each
affected joint through its full range of motion every
day. This can be accomplish in different ways.
E,E&CI'E A"D A'
$>18;8CH BCA0C4684BO 08< C>
?A><>C4 ?7HB820; 2><5>AC, ?A4E4=C
8=9DAH, 0=3 74;? <08=C08=
8=34?4=34=C ;8E8=6.
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equipment (if involved) to help you continue these
activities even as your abilities change.
Mobility aids are used to:
Prevent falls and related injuries
Promote independent mobility
and contracture prevention when there is spacticity.
An 02C8E4 4G4A28B4 is one you do yourself without any
assistance, when your muscles can perform the full
movement. When you cannot move through a ROM
exercise on your own, you can still complete the move-
ment as an 02C8E4-0BB8BC43 4G4A28B4. A helper may
assist the muscle through the movement, or you may
be shown a way to do a self-assisted range of motion
exercise. '0BB8E4 4G4A28B4B are done completely by a
helper when muscles can no longer perform any of the
movement. The helper moves the joints through their
ROM by manipulating your limb. Passive exercises
work the joints but not the muscles. Your therapist can
train your caregiver(s) to do these exercises properly.
The transition from active to passive exercise is seldom
abrupt. You may find that you can do some exercises
actively, some with assistance and still others only passively.
Each person with ALS needs an exercise program tai-
lored to their own individual needs and abilities. A
physiotherapist can prescribe an exercise program that
is right for you. They will demonstrate the exercises to
ensure that they will be performed correctly. Ask for
diagrams of the exercises to help you and your caregiv-
er remember the techniques.
It is important that all exercise be performed in moder-
ation. Use your fatigue levels to help guide you.
Conserve your energy for activities you enjoy. Keep in
mind that day-to-day activities, such as cleaning and
cooking, count as exercise! If you find that your pre-
scribed set of exercises tires you, talk to your therapist.
Changes can be made that will eliminate the risk of
fatigue.
Similarly, none of your exercises should cause pain. If
you do experience pain when exercising, stop that exer-
cise and talk to your therapist. It may be that you are
not doing the exercise correctly, or perhaps some mod-
ification to your exercise program must be made.
&20?2.A6<;.9 EE2?06@2
If you enjoy such activities as walking, stationary bicy-
cling, and especially swimming, :44? C74< D? 5>A 0B
;>=6 0B H>D 20= 3> C74< B054;H. If you experience
cramping or fatigue, do not continue the exercise until
you have consulted your doctor or therapist. Your
physiotherapist and occupational therapists will help
you make adaptations to both the activity and the
'<:2 EE2?06@6;4 (6=@H
C>=BD;C F8C7 0 ?7HB8>C74A0?8BC to design a pro-
gram. Exercises should be done daily and should
become a routine. You may wish to break up your
exercise routine into parts to avoid fatigue. If you
experience fatigue, consult your therapist for a
change in your program.
d4E4;>? 0= 4G4A28B4 ?A>6A0< C70C 58CB 8=C> H>DA
308;H A>DC8=4. You may wish to break up your rou-
tine through the day or on alternate days to avoid
fatigue. If you continue to experience fatigue, con-
sult your therapist for a change in your program.
'0AC828?0C4 8= 0= 02C8E4 4G4A28B4 ?A>6A0<. It
may be necessary to switch to active-assisted or pas-
sive exercises later. Your physiotherapist can help
you to make decisions about the type of exercise
that is most suitable for you.
'A8>A8C8I4 H>DA 4G4A28B4B 10B43 >= 7>F 45542C8E4
C74H 0A4 5>A H>D in terms of injury and pain pre-
vention and maximizing the functions most impor-
tant to you. Ask your therapist which exercises are
the most important ones to do if you have a busy
day ahead of you to conserve energy.
f8=3 >DC F7827 4G4A28B4 ?>B8C8>= 8B 14BC 5>A H>D.
Some exercises can be done while you either sit or
lie down. Passive exercises are usually performed
while you lie down. Your therapist can advise you
on best positions.
EG4A28B4B B7>D;3 =>C 20DB4 >A 8=2A40B4 ?08=.
C>=BD;C H>DA C74A0?8BC 85 C78B 70??4=B.
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I;7B?F $?2C2;A6<;
As limbs become weakened, stiff, or easily fatigued
mobility aids should be discussed with your doctor,
physiotherapist, or occupational therapist. Appropriate
use of mobility assistive devices will A43D24 H>DA A8B:
5>A 50;;B. However, sometimes falls are the trigger for
someone to ask about mobility aids.
In the event that you find yourself falling, it is better to
drop straight down, and not fall forward or backward to
avoid a head injury. The best way to get up from a fall
depends on what muscles you can still use. If you still
have enough arm and hand strength, you can
hold on to something
firm, such as furniture,
for example and pull
yourself up and into a
chair.
When you have fallen, the
most important thing to
do is to get help to sit in an upright posi-
tion. The level of assistance needed will
depend on the level of muscle weakness. You
may only need a little support while rising, or you may
need two people to assist you into a chair or wheelchair.
If you have shoulder weakness, be careful that those
assisting you do not pull on your arms, potentially caus-
ing injury to weakened joints. It is also important that
caregivers not strain themselves, but make you comfort-
able until additional help is available. AB: H>DA C74A0?8BC
C> C4027 H>D 0=3 H>DA 20A468E4AB C74 14BC <4C7>3 >5
A42>E4A8=6 5A>< 50;;B.
!>8=C ?08= 0=3 BC855=4BB 8=9DA84B >22DA F74= H>D 0A4
D=01;4 C> <>E4 H>DAB4;5 and you spend too long in
one position. This can be very uncomfortable for both
the skin and the joints. Arrange for your caregivers to
change your position every couple of hours throughout
the day and to turn you at night. Some people with ALS
improve their comfort in bed by using a sheepskin, egg
crate or tempra foam, gel mattress pad or an alternating
pressure air mattress. Your nurse or therapist can discuss
the options with you and help you to decide what to try.
If you experience joint pain, discuss this with a doctor
or physiotherapist.
=9DA84B C> 1>C7 ?4AB>=B F8C7 A#* 0=3 20A468E4AB
20= >22DA 3DA8=6 CA0=B54AB. All your caregivers
should be instructed in safe and effective transferring
techniques by professional healthcare providers as
soon as possible. It is important that proper body
mechanics be taught to decrease the risk of injury to
both you and your caregiver. In addition to body
mechanics, there are transfer devices such as sliding
boards and mechanical lifts that can be used to pre-
vent injury.
A@@6@A6C2 D2C602@
Assistive devices range from walking aids to transfer
devices to home adap-
tations such as ramps.
Additional information
on assistive devices is
included in the manual
under the A,,$,-$/
E*.$)&'- section.
C0=4B 0=3 .0;:4AB
Most ALS patients will require a cane or walker
sooner or later. Walking poles have also started to
become a popular choice. Gait aid prescription
should be made in consultation with your doctor,
occupational therapist, or physiotherapist. Mobility
equipment will provide the stability you need and
also help your walking be more efficient and less
fatiguing. Walkers provide more stability than canes.
+74A4 0A4 B4E4A0; CH?4B >5 20=4B: single point
(straight cane with a handle); four-point (a cane with
a four pronged bottom); and forearm crutches (a
crutch not positioned under the arm, but has a sec-
tion that grips onto the forearm and has a hand grip).
Walkers come in many forms. Talk to your therapist
about the right walker for you.
&AC7>B4B
Orthoses are devices that are attached to your body
to support weak joints as well as aid in positioning
+A40C H>DA 4@D8?<4=C 0B 74;?5D; 5A84=3B, =>C
>1942CB >5 8<<>18;8CH. 70E4 =0<43 <H F0;:4A
"$82:4H" 0=3 5>A <H F744;2708A 0< C78=:8=6 >5
"B>D38220" 5>A C74 270A8>C C70C 20AA843 (D44=
B>D38220 8=C> 10CC;4 F74= B74 0;<>BC 270B43 C74
)><0=B >DC >5 BA8C08= 8= 62 Ad.
B>118 H0AA8B, 84
'4AB>= F8C7 A#*
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Orthoses help to maintain function and comfort.
The most commonly recommended for people with
ALS are ankle-foot orthoses (AFO), cervical (neck)
collar; low-back brace; wrist splints, and resting hand
splint.
With respect to moving around on foot, AFOs are
customarily recommended if you experience "foot
drop." Weakened ankle muscles cause difficulty pick-
ing up the foot to walk properly without tripping.
Your body alone may compensate by utilizing the hip
muscle to lift the foot high enough to avoid tripping.
However, this can cause fatigue in the leg muscles
compensating. Use of an AFO can reduce the work
of the hip and knee musculature thus enchancing
endurance and reducing tripping and risk for falls.
Your doctor usually prescribes such devices, and your
therapist will fit and instruct you in proper use of the
aid.
.744;2708AB
Many people with ALS will find themselves in need
of a wheelchair at some point in time. Some will use
it only for long excursions outside the home, some
for activities only, and some people will spend most
of their day in a wheelchair. When and how often
you need to use a chair and the type of chair you
need will change overtime.
+74 3428B8>= 01>DC F74= C> 02@D8A4 0 F744;2708A
8B >=4 C70C H>D F8;; <0:4 F8C7 H>DA 3>2C>A 0=3/>A
>22D?0C8>=0; C74A0?8BC.
Questions you need to answer include:
Do you always need another person to help you to
rise from a seated position?
Do you stumble and fall a lot?
Are you fatigued when you walk?
Do you avoid outings because you are afraid of
injuring yourself, or becoming too fatigued?
No one is eager to use a wheelchair and this is natu-
ral, but a wheelchair should be viewed as an opportu-
nity to increase your independence and your ability to
get around. It will also help you to conserve your
energy. A therapist can help you decide on and
obtain the most appropriate chair.
*4;42C8=6 0 2708A F8;; 34?4=3 >= H>DA >F= ?4AB>=0;
=443B. +78B F7827 F8;; A4@D8A4 0= 0BB4BB<4=C <D27
8=?DC 5A>< 0= &+, '+, >A A47018;8C0C8>= B?4280;8BC to
assess your needs and determine required customization
for fit and accessories. Because ALS is progressive, you
may need different types of wheelchairs for varying
periods of time. Try to borrow some of the types of
chairs you may not need on an ongoing basis to save
your resources for more expensive equipment later on if
this is going to be required.
.744;2708AB A0=64 8= CH?4 F8C7 C74 <09>A CF> 20C4-
6>A84B 148=6 <0=D0; 0=3 ?>F4A. Manual chairs are
much less expensive and are most appropriate for some-
one who still has some ability to move themselves.
Power chairs are most appropriate for someone who
cannot, or for individuals with significant fatigue.
Before purchasing a power chair you need to make sure
your home is wheelchair accessible. Additionally, you
may want to consider transportation of the wheelchair
as most power chairs cannot fit in a regular vehicle.
Most manual chairs can be folded into the trunk or back
seat, making them a more portable option for most indi-
viduals.
A CH?820; <0=D0; F744;2708A 5>A B><4>=4 F8C7 A#*
<0H 8=2;D34 C74 5>;;>F8=6 540CDA4B: high reclining
back with headrest; elevating leg rests; seat cushion;
back cushion; adjustable height arm rests removable for
transfers; quick-release rear wheels for easy breakdown
and storage in a vehicle; correct seat height for transfers;
and appropriate overall seat width in order to go
through doors at home.
A ?>F4A F744;2708A 5>A B><4>=4 F8C7 A#* DBD0;;H
8=2;D34B: special drive control electronics which can be
expanded as your needs change (e.g., if hands become
too weak, hand controls can be changed to chin, head or
foot, or single switch scanning; switches for operating
seat tilt, recline, or elevation; adjustable back with head
support, seat cushion; and power or manually operated
elevated leg rests.
Not only can a wheelchair assist with your mobility,
many everyday activities can be accomplished while seat-
ed in a wheelchair. This makes for fewer transfers
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tion. Keeping your body close to the other person,
assist them to step or pivot their feet towards the sur-
face to which they are transferring.
#>F '8E>C CA0=B54A: This type of transfer is most
useful for someone who can take some weight
through the legs but not enough to fully stand or
walk. When transferring to and from a wheelchair
ensure that the brakes are locked and that the armrest
has been removed. Place one arm around the persons
back, just below the shoulder blades and the other
arm under their thighs. Have the person lean forward
and (if able) reach towards the surface to which they
are transferring. Counting aloud throughout the
transfer helps coordinate and minimizes the effort
involved for both parties.
#H8=6PC>-B8CC8=6: Roll to your side facing the edge
of the bed you want to sit up on. If you cannot roll
yourself, your caregiver can be taught how to assist
you. Once you are on your side, bend your knees so
that your legs hang over the edge of the bed and
push yourself up into sitting through using the hand
of your uppermost arm and the forearm of the other
arm. A caregiver can
offer stability as needed.
To lie down from a sit-
ting position the tech-
nique is reversed. Again,
it is very important that
caregivers do not grab and/or pull on
your arms.
)4?>B8C8>=8=6 8= 143: When preparing to get into
bed, always try to position yourself in such a way that
when you lie down your head will be at the upper-
most part of the bed. A Physiotherapist can provide
teaching around bed mobility as needed. Bridging and
rolling techniques can be useful for repositioning pur-
poses. If you are unable to reposition yourself inde-
pendently in bed a turning sheet can be a helpful tool
for caregivers.
2. +A0=B54AB F8C7 E@D8?<4=C
+A0=B54A 1>0A3: A smooth board acts as a bridge
between two surfaces and is very helpful when
throughout the day, conserves energy and reduces the
risk of injury. For example, trays can be affixed for
meals or holding a laptop computer. Electronic switches
used to operate the computer or any other environmental
controls in your home can also be attached.
.78274E4A CH?4 >5 F744;2708A H>D DB4, 8C 8B 2A8C820;
C> 70E4 8C 2DBC><8I43 C> 14BC 58C H>D 0=3 H>DA <>18;8-
CH =443B.
+A0=B54AB
Assisted transfers are a leading cause of 20A468E4A 8=9DAH
when proper body mechanics are not used. Poor transfer
techniques also increase potential harm for the person
being moved. The following transfer strategies can help,
but it is important to always learn and practice transfers
with a therapist before trying it on your own.
1. +A0=B54AB .8C7>DC E@D8?<4=C
*8C-C>-BC0=3 CA0=B54A: When rising from a seated to
standing position (whether alone or with help), proper
positioning is imperative. Feet should be positioned flat
on the floor, hip width
apart, heels in line with
edge of the seat. Scoot
to the edge of the chair,
lean your trunk forward
30-40 degrees and rise.
Arm rests on the chair are a helpful addi-
tional support. There are a variety of
handling techniques that can be shown to you
and your caregiver if you require assist to stand. Some
caregivers prefer the aid of a transfer belt. Your Physical
Therapist can assist you and your caregiver in determin-
ing and teaching the most appropriate handling tech-
niques. It is very important helpers do not grab and/or
pull on your arms, especially if shoulders are weak, as
this could damaged weakened joints. It is also important
not to pull on the helpers back.
*C0=38=6 ?8E>C: This transfer is best suited to someone
who is able to stand and take weight through the legs
but may need some assistance achieving an maintaining a
standing position.
Using either a transfer belt around the persons hips or
placing your hands on their lower pelvis, bring the per-
sons trunk forward and assist them into a standing posi-
F>D;3='C F0=C C> 14 F8C7>DC B0C8= >A
B0C44= B744CB-C74H 0;;>F 5>A 40B84A <>E4<4=C
0=3 B785C8=6 ?>B8C8>=, 4=01;8=6 0 ;>=64A
?4A8>3 >5 8=34?4=34=24.
R
S
+4AAH *27D;CI
A#* 50<8;H 20A468E4A
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standing transfers are becoming difficult. With one
end of the board under your buttocks, and the other
placed onto the surface to which you are transferring,
a sliding transfer can be performed with or without
caregiver assistance. This technique is best used
between surfaces of similar heights.
)>C0C8=6 CA0=B54A 1>0A3: This is a board that has a
lazy Susan feature on it that will rotate you once you
are positioned on it. This takes practice, but can be
very effective. A common brand of rotating transfer
board is the Beasy Board.
#85CB
#85CB 0A4 E0;D01;4 0BB8BC8E4 34E824B 4B?4280;;H
F74= H>D 0A4 => ;>=64A 01;4 C> BC0=3. Additional
information on lifts is included in the Manual under
the Assistive Equipment section.
f028;8C84B
If you have problems walking, or are in a wheelchair,
telephone your destination ahead of time to find out
what accessible facilities are available where you will
be staying, as well as at any of the attractions you may
visit. Some places are very accessible to the disabled,
>C74AB 0A4 =>C. B4 E4AH B?428582 01>DC F70C H>DA
=443B 0A4 - "0224BB81;4" <40=B 38554A4=C C78=6B
C> 38554A4=C ?4>?;4. So, you may need to ask if
there are ramps, elevators, wheelchair accessible
rooms in the hotel, etc.
A8A +A0E4;
Most airports provide wheelchairs that you can take to
and from the plane. Make sure that the airline knows in
advance that you require a wheelchair. If you need to be
accompanied by an attendant, and have the appropriate
document signed by a doctor, some airlines let an
accompanying attendant fly at a discounted rate. Airlines
also provide other services for the disabled including
special meals. When inquiring about reservations, it is
also a good idea to make sure that the airline can
accommodate your disability requirements. = ?0AC82D-
;0A 85 H>D =443 C> H>D DB4 0 =>=-8=E0B8E4 E4=C8;0C>A
F78;4 CA0E4;8=6, 14 BDA4 C> 2>=C02C C74 08A;8=4 145>A4
1>>:8=6 0 CA8? C> 58=3 >DC 85 C74H ?4A<8C C74 34E824
H>D DB4 C> 14 DB43 8=-5;867C. You may need to contact
the device manufacturer to see if they have a sticker you
can affix to the device indicating it meets aircraft safety
requirements.
ADC> +A0E4;
Some families with ALS purchase a wheelchair accessi-
ble (barrier-free) van, for every day use as well as road
trip vacations. Keep in mind you must be assessed and
trained in the use of hand controls by a driver rehabilia-
tion specialist, before you are legally able to drive a hand
controlled vehicle. +74A4 0A4 2><?0=84B C70C 0;B>
A4=C 10AA84A-5A44 2>=E4AC43 E0=B for extended road
trips, or to use upon arrival at your destination. In the
United States (e.g., Wheelchair Getaways, (800) 642-
2042, www.wheelchairgetaways.com). For auto travel in
Ontario, barrier-free van rentals are available in Toronto
through Kino Mobility at (888) 495-4455. Check with
your local Canadian Automobile Association (CAA) or
destination Visitors Bureau to find out about other
resources that may be available in your destination city.
'D1;82 +A0=B8C
Many larger cities offer accessible public transit for peo-
ple with mobility impairments. Accessible public transit
typically consists of specially equipped buses or taxis
licensed by the municipality to carry disabled passengers.
Note that buses and taxis may require booking appoint-
ments for pick-up. Larger cities may also have subways
accessible by elevator. Check with your provincial socie-
ty for public transit options in your area.
+0;: C> />DA +74A0?8BC
/>DA C74A0?8BC 20= 0;B> ?A>E834 8=5>A<0-
C8>= >= >C74A CA0=B54A 34E824B BD27 0B C74
BC0=38=6 CA0=B54A ?8E>C. AB: 01>DC C74 ;0C-
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Build-up of saliva is a common problem among people
with ALS who have tongue and throat muscles that are
weak and not able to automatically swallow the saliva
that builds up in the mouth. Very thick mucus can
also build up in the mouth, making the problem worse.
This build-up of saliva can cause choking and disrupt
sleep.
Relief may come from home remedies, over-the-count-
er products, and prescription drugs and, in extreme
cases, even surgical procedures. Advice should be
obtained from your doctor and/or your local pharma-
cist. A side effect of drugs to relieve a build-up of
saliva is "dry mouth." It's a question of finding the
right balance for you.
The following have proven helpful for managing saliva:
Portable suction machine (check with your doctor
before purchase as suctioning may be counter-pro-
ductive in ALS)
Decongestants and over-the-counter medications
used for colds and allergies
Antidepressants - Amitriptyline may reduce saliva and
enable sleep
Anticholinergic drugs to reduce spasms of smooth
muscle in the bronchi and decrease gastric, bronchial
and salivary secretions
Transderm V patches usually used for motion sick-
ness also tend to dry up saliva
The following have been shown to be helpful for treat-
ing thick mucus:
Apple juice, grape juice, or hot tea with lemon
SSK1 (potassium iodide) 10 drops in a glass of water
two to three times per day. This may take one to two
weeks to be effective. A prescription is required
An expectorant cough syrup
Meat tenderizer mixed with a little water can be used
to coat the tongue or can be placed under the tongue
Papaya extract placed on the tongue may prove help-
ful
'A420DC8>=B: Some of the suggestions for saliva man-
agement include use of medication. Here are some
important points to keep in mind when taking over-
the-counter medication:
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lect in pockets in the mouth as well as between teeth.
Retained food debris, thick mucous and decreased saliva
all contribute to poor oral conditions: too much plaque
and tarter, halitosis (bad breath), gingivitis and tooth decay.
It is important that you take care of your mouth to pre-
vent harmful bacteria from developing. Bacteria can cause
bleeding gums, bone loss, mouth and tooth infections.
There are many products available to make oral care easier.
Assistance with oral hygiene can greatly impact one's self
esteem and dignity.
Here are some issues that you need to be aware of and
tips on promoting good oral health.
G<6;4 A< A52 D2;A6@A
Not many dentists will know about ALS, its effect on
your ability to keep your teeth clean, excess saliva or
the precautions they should take because of a patient's
swallowing problems. Make your dentist fully aware of
these problems. Continue with regular dental cleanings
for as long as possible at your family dental care office.
Consult your dental hygienist for preventative home
care instructions.
!<BA5 F?2@5;2@@
An applicator with lemon and water can be used to
keep the mouth fresh. You can also try an oral rinse
such as Biotene or non-alcohol mouthwashes.
FB??F (<;4B2
Some individuals with ALS with bulbar symptoms
develop a furry tongue. Water may be used to clean the
tongue with an applicator or washcloth. If the tongue
appears white for any length of time, consult your doc-
tor or dentist. Sometimes a condition called 'thrush'
can develop. It is a fungal infection and is easily treat-
ed.
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Always first talk to your doctor or nurse about med-
ication recommendations before use
Sleepiness is often the side effect of medications
Beware that anything containing alcohol can increase
muscle weakness, at least temporarily
Beware of anything that slows breathing
Before putting any medication, crushed or otherwise
in a feeding tube, check with a pharmacist to ensure
that it won't harden and clog the tube
Generic products are usually cheaper
Excess saliva has one advantage! If you have excess
saliva and are still able to eat by mouth, mixing more
saliva with your food makes it both easier to swallow
and digest.
D?F !<BA5
Although management of saliva is common in many
people with ALS, especially those with difficulty swal-
lowing, some are troubled by excessive mouth dryness.
A dry mouth can cause thick mucus to form, which
may in turn cause serious choking problems.
Excessive dryness is usually caused by one or more of
the following:
Breathing mostly through the mouth, rather than the
nose can dry out the lining in your mouth. If you
consistently wake up with a dry mouth, thick mucus
and/or a sore throat, you may be breathing through
your mouth while sleeping
A side effect from some surgical operations
Stress from chronic anxiety or depression
A side effect from some medications
The natural process of aging
Smoking
The following have proven helpful for a dry mouth:
Make a conscious effort to breathe through your nose
If you suffer from nasal congestion, ask your doctor
for assistance (nasal congestion leading to a dry
mouth can cause thick mucus to form, which in turn
may cause choking problems)
Increase your liquid intake (ask your speech patholo-
gist and dietitian which consistency is best for you)
Use a vaporizer (clean the vaporizer once a week with
vinegar and water)
Ask your pharmacist about oral rinses, artificial saliva
spray, and tablets
(<<A5/?B@52@ .;1 F9<@@2?@
If you have weakened hands and arms, an 4;42CA82
C>>C71ADB7 is ideal for brushing your teeth. There are
a variety of electric brush shapes and price ranges:
Oral B, Philips Sensonic, Colgate and Crest spin brush-
es. Others may find that a toothbrush is very helpful
for removing build-up, which occurs on the teeth, par-
ticularly after tube feeding. There are many brushes
widely available and a soft bristle brush is always rec-
ommended to minimize tissue trauma. Newer to the
market are both <0=D0; 0=3 4;42CA82 5;>BB8=6 083B:
Reach Access, Butler Floss Handle and the Oral B
Humming Bird Flosser.
'A>?4A BADB78=6 +427=8@D4:
1. Place the toothbrush at a 45-degree angle to the
gum-line.
2. Use a gentle circular motion several times in the
same spot.
3. Finish with a sweep of the brush from the gum-line
to the chewing surface of the tooth.
4. Repeat this method as you brush from the right to
the left side of the mouth.
Also be sure to brush the inner surfaces of the teeth.
If a caregiver is brushing for you, the handle of a soft
grip toothbrush could be used as a mouth prop to
assist access.
'B0A6<; );6A
Another method for moving food caught in pockets of
the mouth is a suction unit, which is also used for
removing excess saliva to reduce drool.
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As noted earlier, many dental care professionals may
not be familiar with ALS and symptoms of the disease
that will impact dental treatment.
You are encouraged to bring this section of the manual
with you to your dentist or hygienist. Educating them
will improve their ability to work with you to promote
optimal oral health and treat problems if they occur.
H29=3B9 +2/ '6A2@:
www.cdha.ca
www.colgate.com
www.crest.com
www.dentalresoursenet.ca
www.prodhelp.com/ca/oral.shtml
www.jbutler.com
www.oralb.com
www.oral-care.com
www.jnj.com/hom.html
hardship, or result in a less peaceful, comfortable
death.
An excellent resource to help you sort out your
thoughts and engage conversation with loved ones is a
card game activity called Go Wish. It gives you an
easy, even entertaining way to talk about what is most
important to you. The cards help you find words to
talk about what is important if you were to be living a
life that may be shortened by serious illness. Playing
the game with your relatives or best friends can help
you learn how you can best comfort one another when
you most need it. The game can be played on-line or
you can purchase the deck of cards. To learn more go
to http://gowish.org/index.php.
+5.A D<2@ E;1-<3-632 (E#) !2.;?
In healthcare terms, end-of-life is the stage in a per-
son's life where death is expected within a short period
of time (e.g., within six months or less) barring the use
of life sustaining interventions.
In personal terms, end-of-life may begin at diagnosis
for some and not until the final days for others.
)460A3;4BB >5 F74= H>D 14;84E4 C74 4=3->5-;854
BC064 8B, <0:8=6 3428B8>=B 01>DC C74 :8=3 >5 20A4
H>D F0=C 0C C74 4=3->5-;854 0=3 C74 ?A>E8B8>=B H>D
F0=C C> <0:4 5>A H>DA BDAE8E8=6 50<8;H <4<14AB
B7>D;3 C0:4 ?;024 <D27 40A;84A.
C<;A2:=9.A6;4 A52 E;1-<3-632 $5.@2
A224?C0=24
Typically, over time, accepting that life is coming to a
physical end may become less difficult. The functional
and role changes associated with ALS often provide
opportunity for reflection of ones past, present, and
future. During reflection of ones life journey, feelings
of greif and loss may be experienced. Acceptance is
one of the stages of grief one passes through along
the journey. Sometimes we accept things, then go back
to denial, or anger, and sometimes, work our way back
to some form of acceptance.
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onditions, such as ALS, often described as fatal,
or terminal, could perhaps better be described
as "life-shortening." The only true fatal condi-
tion there is, is life itself. End-of-life issues including
organizing financial and legal affairs and determining
your wishes for medical interventions are things all of
us need to address no matter what the status of our
health is today. However, unless we are knowingly in
our last phase of life, most of us would prefer not to
talk about it, much less plan for it.
How we deal with death can be deeply influenced by
our cultural and religious values. Some cultures view
death as a welcomed spiritual transition. Others believe
that death and rebirth are a continual process. During
our lives, the cells in our bodies die at an ever-increas-
ing rate, while at the same time our learning, intelli-
gence and spiritual awareness can continue to grow.
f>A <0=H, C74 58=0; BC064 >5 ;854 20= 14 0 C8<4 >5
CA4<4=3>DB ?4AB>=0; 6A>FC7 ?A4E8>DB;H =>C 4G?4-
A84=243. Accepting that time is limited can motivate
one to really make a difference in one's life and those
around them. This time of life can be a very special
gift. Approaching the end-of-life phase in a positive,
well-thought out way, can make for a good death
which can help provide comfort to surviving friends
and family members.
The information in this booklet encompasses end-of-
life concepts, advance care planning, and ideas for
telling one's life story
As ALS progresses, there are numerous practical issues
to deal with and arrangements to be made. It is often
difficult for a family to talk openly about these practi-
cal matters such as financial changes, tax issues, insur-
ance, medical and personal care choices, a will and
funeral arrangements, as well as distribution of assets
and belongings.
It is best to discuss and plan for the decisions you need
to make well before death is near. '>>A 2><<D=820-
C8>= 0=3 ?;0==8=6 >5 C74B4 ?A02C820; 2>=24A=B
2>D;3 5>A24 50<8;H <4<14AB C> <0:4 3428B8>=B >=
H>DA 1470;5 F8C7>DC :=>F8=6 H>DA F8B74B. +78B
<0H BCA08= relationships, cause unnecessary financial
+H- I('' I!$#&(A"( (# (AK AB#)( I(
A$$&#ACHI"G (HE C#"CE$( #F E"D-#F-IFE
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=BC403 >5 ;>>:8=6 0C >=4B4;5 0B 3H8=6, 8C <0H 14
40B84A C> 2>=B834A H>DAB4;5 0B 148=6 8= C74 58=0;
BC064 >5 ;854. Therefore, the focus is on living. Once
one accepts that the natural progression of their illness
is a shortened life, their acceptance can help prepare
and comfort those around them. A sense of peace
about death can open up opportunities for deep and
meaningful communication and planning for what is to
come.
EG?42C0C8>=B >5 C74 dH8=6 'A>24BB
For individuals are facing death, and those around
them, uncertainty about what happens during the last
days and hours of the dying process may cause fear
and anxiety. To minimize these fears, and/or anxieties,
it is best to 0B: H>DA 3>2C>A 0=3 =DAB4 F70C C>
4G?42C >5 C74 3H8=6 ?A>24BB 0=3 85 C74A4 0A4 B?4-
28582 4G?42C0C8>=B 5>A B><4>=4 F8C7 A#* as
opposed to someone without. If you have contact
with a palliative care/hospice doctor or nurse, or pas-
toral care professional ask them to describe to you
what the dying process will be like and what supports
will be there for you and your loved ones. Have the
family members you expect to be with you be part of
the discussion. They may have fears and questions
they will also want to address. A video that may also
be of help, "f028=6 C74 f40AB-$0:8=6 C74
!>DA=4H," is available through the Canadian Hospice
and Palliative Care Association (http://www.chpca.net).
A;B> 0B: H>DA 3>2C>A >A =DAB4 F70C 502C>AB <0H
8<?02C H>DA 2><5>AC 3DA8=6 C74 3H8=6 ?A>24BB.
The answers you get to your questions will help you
make decisions about specific aspects of care you want
documented in your advance directive to ensure a
"good" death.
EG?4A84=28=6 A G>>3 d40C7
"He died peacefully." Undoubtedly, we have all heard
this phrase. Unfortunately, we have also heard of
other stories where people did not die this way. With
gaining acceptance and appreciation of the palliative
care and hospice movement in our society, we hope to
hear more stories about "dying well." The goal of pal-
liative care is to provide comfort. Dying well also
includes experiencing a death that is dignified by fulfill-
ing expressed health and personal care wishes of the
dying person.
We can take control in advance to promote a good
death for ourselves. Some of the things that can help
are:
Making peace with family and friends, if needed
Exploring spirituality and faith
Completing an advance care plan and sharing it with
family, doctor, and clergy
Communicating openly with loved ones about the
desired environment for the last days or hours of life
Advance care planning can avert potentially difficult
situations for family members. Limiting the number
and type of decisions others have to make on one's
behalf can substantially reduce their stress and tension
levels. However, once plans have been made, decisions
should be revisited every so often to make sure the
plan is still desirable and to make changes if necessary.
A3E0=24 20A4 ?;0==8=6 20= 14 BC0AC43 0B B>>= 0B
H>D 0A4 A403H, 0=3 <0H 8=2;D34 27>824B => 38554A-
4=C 5A>< 145>A4 H>D 703 A#*. Regularly reviewing
your advance care plan to reflect your current outlook
allows you, your alternate decision maker (Proxy,
Representative, Power of Attorney for Health Care),
and the healthcare team to become comfortable with
your choices.
Legal and financial planning information is discussed
in detail in *42C8>= 6, L"a% a'd F$'a'c$a%
C(',$d+a-$(',. The two advance care planning areas
of focus in this sub-section are: 4=3->5-;854 20A4
27>824B and 14A40E4<4=C ?;0==8=6.
E;1-<3-632 C.?2 C5<602@
Explicit instructions in an 03E0=24 20A4 ?;0= should
help to ensure a dying person is treated according to
their wishes and will have a dignified death as defined
by them. Completing an advance care plan and
appointing a substitute decision maker ("proxy) in a
legal document, frequently called a "?>F4A >5 0CC>A-
=4H 5>A 740;C7 20A4," in the event one is unable, or
too sick to communicate their wishes for care is criti-
cal. Wishes expressed in a an advance care plan can be
as specific as the individual wants them to be. When
preparing how you want to be cared for in your final
AD*A"CE $A""I"G
at given stages of your ALS progression, it is you who
will decide when to suspend these treatments.
Decisions about medical interventions geared to
extend life are very personal and should be based on
medical information, financial resources, caregiver sup-
port and resources, and your perceived quality of life.
C 8B 2A8C820; C> ?4A8>3820;;H A4E84F 03E0=24 20A4
?;0=B. While quality of life means something different
to every single person, it can also change meaning
within an individual over time. For instance, a person
with ALS may indicate at one point that in the event of
respiratory failure they do not wish to use mechanical
ventilation. However, that same person may change
their mind when they hear there is a new grandchild on
the way and that mechanical ventilation in the event of
respiratory failure would ensure being able to live and
greet the new member of the family. On the contrary,
someone with a PEG and/or ventilatory support may
decide they no longer want to live with those interven-
tions if a given situation were to arise. C 8B 8<?>AC0=C
5>A ?A>54BB8>=0; 20A468E4AB C> ?4A8>3820;;H A4E84F
C748A ?0C84=CB' 03E0=24 38A42C8E4B F8C7 C74< and
discuss what they are presently feeling about their
choices.
+7A44 <09>A 8=C4AE4=C8>= 8BBD4B C70C >D67C C> 14
033A4BB43 8= 0= 03E0=24 20A4 ?;0= 0A4:
)4BDB28C0C8>=: Ask yourself whether or not you want
to be resuscitated in the event of respiratory failure.
Ask your doctor about how to obtain a Do Not
Resuscitate (DNR) order, if that is what you prefer.
#854-4GC4=38=6 8=C4AE4=C8>=B BD27 0B 54438=6 CD14B
0=3 <4270=820; E4=C8;0C8>=: A sample advance care
plan that focuses on PEG and mechanical ventilation,
designed by the University of Washington for patients
with ALS, is referenced in *42C8>= 6, L"a% a'd
F$'a'c$a% C(',$d+a-$(',. This document may help you
make your decisions and assist you with wording to use
if you are required to use a specific form recognized
by your Province.
'08= <0=064<4=C: Stating one's desire to have pain
appropriately monitored and treated is very important.
Discuss with your health care team how you would like
any pain controlled.
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phase of life 2>=B834A =>C >=;H F70C <43820; 20A4
<40BDA4B H>D F0=C, 1DC 0;B> F74A4 H>D F0=C C> 384
0=3 F7> 0=3 F70C H>D F0=C C> 70E4 0A>D=3 H>D.
This is your life a'd death, and you are entitled to
being in control of your dignity.
More detail and references for advance directive forms
are included in *42C8>= 6 L"a% a'd F$'a'c$a%
C(',$d+a-$(',. An excellent on-line Canadian
resource which describes advance care planning
and making a plan is the Speak Easy Program at
http://www.advancecareplanning.ca/home.aspx.
In a nutshell, there are four steps to advance care
planning:
1. G0C74A information.
2. +0;: about decisions.
3. 'A4?0A4 an advance care plan.
4. =5>A< appropriate others and provide them
copies.
$43820; C0A4 C7>824B
The type of medical care that you want during the
course of your disease as well as in your final days is
up to you and no one else. Just as it is you who needs
to make the decision about a PEG tube or a ventilator
+52; F<B =?2=.?2 . 52.9A50.?2
16?20A6C2 ?2:2:/2? A<:
1. Discuss your decisions with your loved ones and
doctor.
2. Keep a copy in a safe, easily accessible place at
home that your caregivers know about.
3. Give a copy to your doctor for your medical
chart and your appointed decision-maker(s).
4. Carry a wallet sized card with you that names
your appointed alternate decision making and
their contact information, in the event of a med
ical emergency outside the home.
5. Revisit your decisions every few months and
re-evaluate. Communicate any changes you want
to make.
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= 38B2DBB8=6 C74 2>=C4=C >5 C74 03E0=24 20A4 ?;0=
F8C7 H>DA 740;C720A4 C40<, 8C 8B E8C0; H>D 4G?;>A4
C74 <43820; <0=064<4=C >5 20A4 >5 BH<?C>=E4=C8>=0; 8=C4AE4=C8>= 8B =>C 34B8A43
(4.6. 8=E0B8E4 E4=C8;0C8>=). In particular, when you
choose not to have invasive breathing support, it is
advisable to have a plan for managing feelings of
breathlessness, and for the rare instance of acute
breathing distress. Faced with the dilemma of acute
breathing distress and with a plan indicating no life
sustaining interventions, it may be reasonable to accept
temporary non-invasive breathing support (e.g., bi-level
ventilator) to control symptoms. Both invasive and
noninvasive ventilation can be withdrawn at any time,
and the medical team can ensure that this is done com-
fortably. It is legally and morally acceptable in Canada
to ask to have life-sustaining therapies including
mechanical ventilation and a feeding tube withdrawn.
However, you may wish to speak with your spiritual
advisor, as there are some religions where withdrawal
of mechanical ventilation is not acceptable.
C7>824B A1>DC .74A4 C> d84
Many people with ALS prefer to die in the peace of
their own home. Others may prefer to be in a facility
of some kind. Whichever is your wish, you must com-
municate this to your family and healthcare team while
you are still able to do so. Factors that might not make
dying at home possible include your family's financial
or emotional inability to cope, caregiver burnout, respi-
ratory problems or insufficient home care services.
Remember, calling 911 will bring a medical team obli-
gated to keep you alive, including artificial life support
that you may not want. Some provinces may have a
death at home policy which allows you to by-pass call-
ing 911. There will be forms to complete. Please check
with your local ALS Clinic or Society.
5 H>D 27>>B4 C> 384 0C 7><4, you may consider
some specifics such as:
Which room do you want to be in?
Is there a favourite view you want to be positioned
toward?
C7>824B A1>DC .7> 0=3 .70C />D .0=C
AA>D=3 />D
To take the guess work out of deciding who is appro-
priate to visit with you during your last days or hours,
tell your caregivers ahead of time.
A few of the questions you need to ask yourself and
answer include:
Are there people you want to re-connect with now?
Whom do you want near you in your final days?
Is there something special you want them to do for
you, like read your favourite book aloud?
Do you want your pet at your side?
*><4 ?4>?;4 0A4 E4AH B?428582 01>DC 7>F C74H
F0=C C74 4=E8A>=<4=C 0A>D=3 C74< C> 14. It is a
good idea for you to contemplate the kind of setting
you think would put you at ease. Communicating this
to caregivers and other loved ones will enable them to
make sure you have the setting you want. It will also
make them feel good about being able to help you feel
at peace and "do something" constructive.
Some of the questions you may ask yourself include:
Do you want music playing and if so what kind?
Do you want to be near an open window so you can
feel a breeze?
Would you like candles with a favourite scent burn-
ing?
Are there important pictures of places you've been,
or family gatherings that you want in your view?
There are many decisions you can choose to make.
Give as much thought as you can and involve others to
help you sort through it all. +74A4 0A4 B><4 4G24;-
;4=C A4B>DA24 1>>:B 0=3 E834>B 0E08;01;4 C> BD?-
?>AC H>D. Many are listed in the "Resource Section"
of the Ma'.a%. One in particular is Living with Life-
Threatening Illness: AGuide for Patients, Their
Families, and Caregivers, written by Kenneth
Doka, PhD, a leading authority on end-of-life issues.
Check to see what may be available through your local
ALS Society. What they do not have they may be able
to help you find.
B2?2.C2:2;A $9.;;6;4
Another type of advance planning is bereavement
planning. It is very beneficial for family members and
close friends of a dying person to 834=C85H A4B>DA24B
C70C F8;; 74;? C74< 2>?4 F8C7 C74 >E4AA838=6 B4=B4
5 H>D 27>>B4 C> ;40E4 0 ;4602H >5 <4<>A84B, C74A4
0A4 <0=H 5>A<0CB H>D 20= DB4. If you can type or
use computerized communication software, document-
ing a written story may be your preference. If your
speech is good, you may prefer to have a friend or
family member document or videotape your stories as
you tell them. It's up to you. An excellent resource
for getting started and guiding you through the process
is, AGuide to Recalling and Telling Your Life
Story, published and available through the Hospice
Foundation of America (www.hospicefoundation.org).
This is a work book that suggests topics such as
"Family Life," "Growing Older," and "Reflections"-and
suggested questions to use to elicit stories and experi-
ences from you and your loved ones.
While you may need to spend a few dollars to buy the
G.$d plus some documentation materials, what you
end up with is a rich personal legacy which is priceless.
F6;.9 "<A2 <; E;1-<3-632 I@@B2@ .;1 A1C.;02
C.?2 $9.;;6;4H
Everyone recognizes that end-of-life issues are difficult
to face and talk about. However, keep in mind that
avoiding advance care planning can be more difficult
later for your loved ones if they are left making deci-
sions for you. Try to approach the end-of-life phase as
an opportunity for reflection, planning, and enrich-
ment.
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340C7. One such resource is the booklet, C()$'" W$-#
G+$!, published by the ALS Society of Canada which
is available through the ALS Society in your province.
This booklet also touches on 0=C828?0C>AH 6A845 which
is experienced before death by both the person who is
going to die and their loved ones. This type of grief is
of course unique to those affected by long-term ill-
nesses. During the course of the illness there is griev-
ing around losses of function, roles, and hope.
Triggers of anticipatory grief could be a terminal diag-
nosis, decreasing control over daily activities, loss of
function, changes in roles, and lost hopes and dreams
for the future.
'BH27>B>280; BD??>AC during the grieving process can
help individuals process and express their feelings in
healthy ways that will eventually help bring about heal-
ing. Sources of support in the community include
7>B?824 >A60=8I0C8>=B, <4<14AB >5 C74 2;4A6H, 0=3
<4=C0; 740;C7 ?A02C8C8>=4AB such as therapists who
specialize in grief counselling. Another great source is
?44A BD??>AC from others who have gone through the
same experience. Your local ALS Society may be able
to match bereaved caregivers with former ALS care-
givers who either meet as a group or are willing to help
others one-on-one.
Have you ever thought about how you want to be
remembered, or what you want to leave behind to help
comfort your loved ones? +4;;8=6 >=4'B ;854 BC>AH
0=3 3>2D<4=C8=6 <4<>A84B >= ?0?4A, E834>, >A
0D38> C0?4 20= 14 0= 4G24;;4=C F0H C> 74;? CA0=B8-
C8>= C> C74 58=0; BC064 >5 ;854 0=3 ;40E4 >=4'B <0A:
>= C74 F>A;3. The process can be very therapeutic in
terms of searching for the meaning of one's life and
identifying core values and beliefs. Sharing it will pass
on valuable lessons to others.
Looking back and sharing special memories can be
both a fun and enriching experience for yourself as
wells as loved ones engaged in the process. Family and
friends will likely be able to trigger memories of things
you may have forgotten, or buried and vice versa.
Leaving a legacy may spark feelings of satisfaction of a
life well-lived as well as give survivors a tangible mem-
ory of who you are, what you believed, and how you
lived your life to inspire future generations.
EA*I"G A EGAC-
your disability. Some programs will fund only one proj-
ect per patient. Therefore, consider carefully what your
longer term needs are likely to be before applying for
this type of assistance program.
C742: F8C7 C74 A#* *>284CH 5>A E@D8?<4=C
Some ALS Units and Chapters in your area may have a
limited or extensive inventory of equipment acquired
through the generosity of contributors and for use by
people with ALS. See the information provided by
your provincial ALS Society for more specifics.
34=C85H #>20; E@D8?<4=C *D??;84AB
Most suppliers of equipment for people with disabili-
ties are listed in the phone book under "Hospital
Equipment and Supplies."
G4C A3E824 5A>< H><4 C0A4
Home care staff is another source of information
about assistive equipment. Many of them have proba-
bly visited other people with similar needs, and have
seen how useful different types of equipment have
been.
A@@6@A6C2 (<<9@ 3<?
A0A6C6A62@ <3 D.69F 6C6;4 (AD)
Many people with ALS develop trouble with grasping
and manipulating objects. It is often possible to <>38-
5H 4E4AH30H C>>;B or to substitute specially designed
versions of such tools to compensate for weakness in
the muscles of the fingers, hands and wrists.
For example, C782: 70=3;4, ;867CF4867C D=C4=B8;B
20= <0:4 40C8=6 <D27 40B84A 5>A C7>B4 F8C7 0
F40: 6A0B?. There are also sets of cutlery available
with thick, long handles that compensate to some
extent for impaired shoulder movement. $D6B F8C7
>E4AB8I43 70=3;4B will allow you to slip all fingers
under the handle, reducing the danger of spills. A
?;0C4 6D0A3 gives a slightly raised edge to a plate so
that food can be pushed against it onto a spoon or
fork. Common devices such as electric toothbrushes
and shavers can make these tasks easier when arms are
weak.
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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ssistive equipment plays a major role in the
lives of persons with ALS. Because ALS is a
progressive condition, physical changes occur
over time requiring the on-going need for assistive
devices to maintain function. ALS will affect each
individual somewhat differently. For you, a wheelchair
may not be necessary. For someone else, specialized
communication devices may never be required. +78B
B42C8>= 0CC4<?CB C> 68E4 H>D 0= >E4AE84F >5 C74
<0=H CH?4B >5 4@D8?<4=C C70C <0H 14 =44343 1H
B><4>=4 F8C7 A#*. %>C 4E4AH>=4 F8;; =443 0;; >5
8C 0=3 24AC08=;H =>C 0;; 0C >=24.
Before purchasing assistive equipment or modifying
your home, you are advised to 2>=BD;C F8C7 ?A>54B-
B8>=0;B F7> 0A4 50<8;80A F8C7 C74 03E0=C064B 0=3
38B03E0=C064B >5 C74 4@D8?<4=C C70C 8B 0E08;01;4
C> B4AE4 H>DA =443B. Equipment can be expensive, so
you need to make wise choices.
Think through what your needs are, both in the imme-
diate and longer term. Discuss your needs with a doc-
tor, nurse, physiotherapist, occupational therapist or
other healthcare professional with knowledge of your
condition, and familiarity with the available equipment
to serve those needs. $0:4 BDA4 C> 2742: H>DA >F=
?A8E0C4 >A 6A>D? 8=BDA0=24 ?;0= C> 34C4A<8=4 F70C
2>E4A064 H>D 70E4 and what documentation you
require for coverage. Some plans may only cover cer-
tain items every so many years.
Find out from your healthcare professionals, what loan
equipment or financial assistance might be available.
Your provincial ALS Society is also an excellent source
for helping you locate the kind of equipment you may
need. In many cases, the Society will have the equip-
ment you need through their equipment loan program.
You may also want to visit local suppliers to test out
various equipment options.
C742: =C> f8=0=280; *D??>AC 'A>6A0<B
Check with your local healthcare professional and
equipment suppliers to find out what government sup-
port programs are available in your area for equipment,
and for home renovations required to accommodate
BEF#&E $)&CHA'I"G E%)I$!E"(
(-$E' #F E%)I$!E"(
The double action of gripping and turning a doorknob
may also be a problem for you. Changing to a ;4E4A
BCH;4 70=3;4 could be the answer since it allows the
door to be opened by pushing down or pulling up the
lever. A broad wooden or plastic handle attached to
your door key can help with the turning motion neces-
sary to turn the key in the lock.
To assist with written communication, use C782: ?4=B
>A ?4=28;B that are easier to grasp, Pen/pencil grips
can be found at school supply stores. Gel pens that
glide easier on paper may also help. Your health pro-
fessional can show you different writing aids that mini-
mize the amount of pinch or grip required to hold a
pen or pencil.
Clothing fasteners can be difficult to use if your hands
and fingers are weak. There are devices to assist in fas-
tening buttons, such as zipper pulls and button hooks.
-4;2A> is a popular replacement for buttons, zippersm
and laces. Elastic shoe laces can turn lace up shoes into
slip-ons. Such items as pants or skirts with 4;0BC82
F08BC10=3B need no fasteners at all. Although
pullover tops have no closures, they can be some of
the hardest clothes to get on and off. Ensure pullovers
are loose and stretchy. Your occupational therapist can
show you tips to make dressing easier.
Electronic devices known as "4=E8A>=<4=C0; 083B C>
308;H ;8E8=6 (EAd#B)," can be installed in the home
to enable a person with ALS to control lights, radios,
televisions, open and close doors, start a coffee maker,
etc. with the palm of the hand, a head movement, or
even a puff of breath. Hands-free speaker phones can
be used with voice commands or the touch of a
switch.
.4 70E4 <4=C8>=43 9DBC 0 54F >5 C74 <>385843 >A
B?4280; C>>;B 0E08;01;4 C> <0:4 4E4AH30H ;854 40B84A
5>A H>D. +74A4 0A4 <0=H <>A4 BD27 C>>;B C70C H>DA
>22D?0C8>=0; C74A0?8BC 20= C4;; H>D 01>DC. It is
important to discuss any tool with your therapist
before making a purchase. Some devices are reasonably
priced and some are expensive. Some will assist you for
a long period of time, whereas others may only be use-
ful in the short-term. Your therapist can save you dis-
appointments as well as costly errors.
B<1F 'B==<?A@
The various types of body supports available are called
>AC7>B4B. Available through hospitals and clinics,
orthoses help to support your joints in certain posi-
tions when your muscles weaken, prevent contractures,
enhance comfort, and aid in function. Orthoses are
typically prescribed by a ?7HB80CA8BC, and may be rec-
ommended by your doctor or physiotherapist or occu-
pational therapist..
There are more orthoses available than we can discuss
in this brief overview, but some of the major ones are
described.
f>>C 0=3 A=:;4 *D??>ACB
Many people with ALS experience "foot drop" which
is caused by weakened muscles supporting the ankle
joint. This leads to stumbling on stairs or curbs and
tripping while walking. The answer may be a simple
ankle-foot splint made of plastic that is inconspicuous
under trousers or slacks. These devices are often
referred to as "0=:;4 0=3 5>>C >AC7>B4B" (Af&B).
H0=3 0=3 .A8BC *D??>ACB
A wrist and thumb splint can stabilize the wrist and
thumb, helping you to grasp objects. Additional sup-
ports can be added for positioning the fingers to
enchance your function despite weakened fingers.
The D=8E4AB0; 2D55 may be the most familiar orthotic
aid. This straps over the hand and allows you to grasp
such objects as cutlery, hairbrushes and other small
personal objects. A thumb splint helps in squeezing the
fingers in opposition to the fingers and makes it easier
to grasp and hold an object for use.
*7>D;34A 0=3 %42: *D??>ACB
Weakened shoulder muscles can cause the arms to
"hang" more than normal, which can become very
painful. A shoulder sling can pull the arm up, reducing
the pressure on arm muscles and ligaments. There are
also cervical collars that can support the head when
neck muscles are weak.
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$0=D0; .744;2708AB
Lightweight manual wheelchairs are often used by peo-
ple who retain CAD=: BC018;8CH 0=3 C74 018;8CH C> B4;5-
?>B8C8>= themselves in the chair. Supportive seat and
backrests can be added for comfort and support. They
have large wheels that can be propelled by the user and
push handles at the back if assistance is needed. These
chairs are light to push and may be transported by car.
Because ALS is a degenerative disease, it may be more
cost-effective to rent or borrow this type of chair from
your provincial ALS Society equipment pool, leaving
funds available for other equipment.
L $0=D0; '>B8C8>=8=6 .744;2708AB
Manual wheelchairs with dynamic positioning features,
for example that tilt back, can be used for people with
limited ability to weight shift or reposition. In most
cases assistance is required to move and tilt the wheel-
chair. Specialized seating can be added to optimize
postural support, comfort and pressure relief.
L '>F4A *2>>C4AB
Power scooters can be used by people who have limit-
ed walking but can transfer independently and have
adequate arm strength to operate the controls. They
provide basic seating and postural support and are gen-
erally suitable for community mobility only. Therefore
cost and length of use are important considerations.
'>F4A .744;2708AB
For the more advanced stages of ALS, a battery-pow-
ered wheelchair may be required. These can be operat-
ed using a joystick or other switching devices that can
be controlled by almost any part of the body that you
can move. Control switches can be modified to oper-
ate with even very small muscle movements.
'>F4A F744;2708AB 0;;>F 0 ?4AB>= C> A4<08=
<>18;4 0=3 8=34?4=34=C C7A>D67>DC C74 <>A4
03E0=243 BC064B >5 A#* 8= C748A 7><4 0=3 2><-
<D=8CH. H>F4E4A, =>C 0;; ?>F4A F744;2708AB 0A4
2A40C43 4@D0;;H! It is essential that modification and
customization in seat and back supports, positioning
features, electronics, and controls are possible for com-
plex and changing needs.
Specialized seat cushions and back supports can be
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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C0=4B 0=3 .0;:4AB
Most people with ALS will require a cane or walker at
some point. These are especially useful when one leg is
stronger than the other. Canes should always be used
on the stronger side, with the cane moving forward
with the weaker leg. There are single or multi-legged
canes, so discuss with your therapist which type of aid
might work best for you. Another type of cane, or
forearm crutch extends up the lower arm, almost to
the elbow, with a ring that fits around the arm for
added support. Walkers provide maximum support and
stability because they spread the weight over a wide
area. +74 27>824 >5 20=4 >A F0;:4A B7>D;3 14
<034 8= 2>=BD;C0C8>= F8C7 H>DA 3>2C>A, >22D?0-
C8>=0; C74A0?8BC, >A ?7HB8>C74A0?8BC. />D B7>D;3 =>C
CAH C> DB4 8C D=C8; H>D 70E4 A4248E43 8=BCAD2C8>=
5A>< H>DA C74A0?8BC.
+522905.6?@
Getting fitted with a wheelchair requires careful con-
sideration and professional advice. First, your size will
determine the appropriate height, depth and width of
seat, as well as the height and width of the back. An
occupational therapist can help you get the right chair
for you.
C 8B E4AH 8<?>AC0=C C70C H>D 64C C74 A867C 2708A.
Many factors will have to be considered, such as your
physical condition now and in the future, your financial
situation, insurance coverage, the availability of finan-
cial assistance, your level of help from family and
friends, and the sorts of services your community pro-
vides for transportation. A wheelchair is a major pur-
chase, and if it is going to enhance your life now and
in the future, it must be a careful choice.
+A0=B?>AC .744;2708AB
Transport wheelchairs are helpful for people who
require assistance or cannot walk long distances. They
are very basic, provide minimal postural support, and
require assistance to push. However, they are inexpen-
sive, very portable, can be easily transported in a car or
airplane.
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71
added to optimize postural support, comfort and pres-
sure relief. Power dynamic positioning features like tilt,
allow independent repositioning for weight shift and
pressure relief to prevent pressure sores and postural
changes to optimize respiration and comfort. Some
power wheelchairs have capabilities to control other
devices like your TV or computer, for example. If
hand and arm function are limited and you can no
longer operate the joystick, other options like head
controls or switches that are operated by other parts of
the body, are possible.
Due to the complexity, these types of wheelchairs are
very expensive and financial resources like insurance
coverage, not-for-profit organizations and provincial
programs should be considered. It is therefore impera-
tive that a power wheelchair be assessed, trialed and
prescribed by an occupational therapist with expertise
in these types of wheelchairs.
63A@ .;1 'A.6? G9612@
This type of equipment is used to address home acces-
sibility problems or to make it safer and easier for you
to transfer from one surface to another. It can be
expensive and requires much consideration and pre-
planning to determine what is the best solution for
your home-setting and longer-term situation. The
types of lifting equipment to consider include lift
chairs, stair glides, portable lifts, ceiling-track lifts and
wheelchair lifts. C 8B 14BC C> 64C 0= >22D?0C8>=0;
C74A0?8BC C> 0BB4BB H>DA A4B834=24 0=3 B8CD0C8>=
F74= <0:8=6 H>DA ?;0=B A460A38=6 ;85C8=6 34E824B.
#85C C708A
People with weakened legs will find it difficult to get
up out of chairs. Higher chairs with arms to push up
can make it easier. Ideally, a <>C>A8I43 ;85C 2708A 20=
14 DB43 C> B054;H A08B4 0 ?4AB>= 5A>< 0 B40C43 C> 0
BC0=3. In addition, lift chairs also recline to optimize
sitting posture and comfort and to allow gravity assist-
ed positioning for people with a weak neck and/or
back. Some models come with heaters, a massage
device and other features that may be beneficial.
C48;8=6 #85CB
C48;8=6 ;85CB 0A4 DBD0;;H 8=BC0;;43 C> <>E4 0 ?4AB>=
14CF44= C74 143A>><, 10C7A>>< 0=3 ;8E8=6 0A40B.
In this case a rail is installed in the ceiling, and the per-
son is lifted in a sling that attaches to the ceiling lift.
There are also turntable tracks that allow the running
tracks to intersect or cross. Installing a ceiling lift sys-
tem is a major project that requires professional advice
and installation.
'>AC01;4 f;>>A #85CB
'>AC01;4 5;>>A ;85CB 0;B> DB4 0 B;8=6 C> ;85C 0 ?4AB>=
D?. +74H 20= 14 A>;;43 0A>D=3 >= >=4 ;4E4; >5 C74
7><4, 1DC A4@D8A4 BD558284=C 5;>>A B?024 C> <0=>D-
E4A. A common type of floor lift is the H>H4A #85C.
Some of these kinds of lifts are light, can be broken
down into two pieces, and moved to a different level of
the home, or put in a car. The minimum door size for
moving a person through in a portable lift is about 26".
Using a ceiling or floor lift requires training, to ensure
the safety of both you and your caregiver.
*C08A G;834B
Most stair glides use a track that is fastened securely to
the wall side of a stairway. An automated chair can
then be moved up and down the track. Stair glides can
go on curving stairs, and even around corners, may not
be a good long term solution, as safe sitting balance
and ability to transfer on and off is required. *C08A
6;834B B7>D;3 >=;H 14 8=BC0;;43 1H 0 ?A>54BB8>=0;
50<8;80A F8C7 C74 B054CH 0B?42CB >5 C78B 4@D8?<4=C.
'>A27 #85CB
Porch lifts are often used when it is not practical to
have a wheelchair ramp from an outside door to
ground level. Again, 8=BC0;;8=6 0 ?>A27 ;85C BHBC4< 8B 0
<09>A ?A>942C F7827 A4@D8A4B 03E824 0=3 8=BC0;;0-
C8>= 1H 0 ?A>54BB8>=0; F7> 8B 50<8;80A F8C7 0;; B054CH
0B?42CB >5 8=BC0;;0C8>= 0=3 DB4.
B.A5?<<: E>B6=:2;A
There are several devices to help people with disabilities
in the bathroom. )08B43 C>8;4C B40CB or 2><<>34
2708AB are a standard requirement for those with weak-
ened leg muscles. Raised seats can range from home-
made and low-cost seats to more expensive models.
Another option is to have a plumber raise the level of
of AAC equipment for loan.
Acquiring AAC equipment is only half of the equation.
C 8B 2A8C820; C70C H>D 0A4 ?A>?4A;H 0BB4BB43 1H 0=
0BB8BC8E4 C427=>;>6H 4G?4AC, F7> <0H 14 0 B?4427
;0=6D064 ?0C7>;>68BC >A >22D?0C8>=0; C74A0?8BC 0=3
CA08=43 7>F C> DB4 C74 34E824B. It is important for
your family caregivers to also be trained.
(B/2 F2216;4 E>B6=:2;A
Tube feeding normally requires two pieces of equip-
ment:
1. C>=C08=4A with a tube and clamp for the liquid food
2. '>;4 to hang the container on
A ?D<? <0H 0;B> 14 DB43 8=BC403 >5 0 2;0<? C>
A46D;0C4 C74 ;8@D83 5;>F 5>A 0 B7>AC ?4A8>3 (2 to 4
weeks) while you get used to tube feeding. A special
syringe can also be used to inject liquid through a tube,
or to check if your stomach has too much liquid.
C>=C08=4AB
Feed containers come in the form of plastic bags or
bottles with a tube attached. Some containers have a
stretchable section, which is required if a pump is being
used. These containers need to be thoroughly cleaned
every day and replaced with a new container approxi-
mately every seven days.
When choosing a container you will consider various
factors:
f>A<0C: A plastic bag or plastic bottle
C0?028CH: Common sizes range from 500 to 1000 ml
+D14: You may need the type of tube that works
with a pump
'>;4B
It may be practical to rig up your own method for
hanging the feeding container. One way is to use a pole
held up by a Christmas tree stand. If you wish to pur-
chase a pole, the commonly available models are priced
from under $100 to over $400. Most models are
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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the toilet by putting it on a low platform.
Attachments to give a standard toilet a 1834C function
are also available. Some people with ALS who have
problems with their arms and hands find using a bidet
enables them to retain total independence with toileting.
When it comes to bathing, there are a number of assis-
tive devices. There are several models of 10C7CD1 B40CB
and ;85C8=6 4@D8?<4=C that can assist you in sliding or
rotating over the tub for showering.
Retail stores that handle equipment for the disabled
often have a variety of bathroom aids on display. Check
with your occupational therapist or other healthcare
professional for their assistance in choosing the right
equipment for you.
B21@ .;1 !.AA?2@@2@
A common problem during the advanced stages of
ALS is being unable to roll over in bed. Lying in one
position can become painful, or a caregiver is required
to move you every few hours. *0C8= B744CB and or
pyjamas can make turning easier. There are also differ-
ent mattresses and overlays of various materials like
foam, gel, and air which can optimize comfort and
pressure relief.
A bed with an incline feature can be helpful with
breathing and comfort. Devices from 5>0< F4364B to
fully automatic hospital beds are used.
AB4:2;A.A6C2 .;1 A9A2?;.A6C2 C<::B;60.A6<;
(AAC) E>B6=:2;A
There are many different types of assistive devices
available to help communicate if speech is impaired.
These devices range from alphabet and message
1>0A3B, to B?40:8=6 E0;E4B for those on a respirator,
to small 70=3 74;3 4;42CA>=82 B?40:8=6 34E824B, to
2><?DC4A 10B43 BHBC4?78BC820C43 B>5C-
F0A4 0=3 B?4427 BH=C74B8I4AB. Your choice will
depend on your specific needs, available resources and
your adaptability to new ways of communicating.
Keep in mind that assistive technology is continually
improving. A representative from your local ALS
Society should be able to help you identify equipment
resources in your community and may have some types
See *42C8>= 4,
Sub-section Ada)-$'" -( C#a'", $' S)c# a'd
Ma$'-a$'$'" C(&&.'$ca-$('.
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73
extendible, have casters, and two or four hooks.
When choosing an IV pole, you should consider the
following options:
$>A4 4G?4=B8E4 <>34;B tend to be more sturdy and
stable
f;>>A <>34;B or other models that attach to a table,
chair or a bed
.744;2708A <>34; can attach to your wheelchair
allowing you to bring it wherever you need to go
'>2:4C <>34; available for travelling. It has fittings
that will attach to a variety of surfaces, including a
suction cup for windows, a magnet for metal surfaces,
an eye and two hooks, one of which is for the food
container.
Listed below are some considerations to keep in mind
when making home modifications to accommodate
wheelchair users:
)40AA0=64 5DA=8CDA4 to make wheelchair access and
movement easier
=BC0;; A0<?B (12:1 slope equals 12 inches length for
every one inch height) and guardrails
d>>AF0HB should be at least 76 cm (30 in.) wide.
They can be widened by removing the door and
hinges, or removing inner moldings and installing a
sliding door or curtain.
H0;;F0HB should be 92 cm (36 in.) wide to accom-
modate the chair's turning radius. A cleared turning
space of 1.6m2 (five sq. ft.) is necessary for safe and
easy turns
*?024 D=34A B8=:B 0=3 2>D=C4AB to accommodate
wheelchairs can be made by removing cupboards.
Exposed pipes must be insulated
+782: 20A?4CB 20= 78=34A the movement of a
wheelchair; Berber carpet, wood, laminate, or
linoleum are good choices for wheelchair users
*7>F4A A4=>E0C8>=B should be completely barrier
free with no step for wheelchair access
Some families will choose to make extensive home
modifications while others will not. +74 58=0=280;
2>BC 8B 0 <09>A 2>=B834A0C8>=. However, it is impor-
tant to note that while it may seem like a good idea to
make modifications well in advance of needing them,
given your expectations of the disease process, keep in
mind ALS is very individual. Your disease may
progress slowly and spending money on a roll-in show-
er now, may not be something you need for several
years if ever. The more expensive the modification,
the more consultation you will need with your occupa-
tional therapist. C 8B 0;B> 0 6>>3 8340 C> C0;: C>
>C74A 50<8;84B F7> 70E4 144= 05542C43 1H A#* C>
B70A4 C748A C7>D67CB, >?8=8>=B, 0=3 4G?4A84=24B.
In recent years, service dogs have become an assistance
option (and companion) for people with ALS. They
can be taught various tasks, such as carrying or fetch-
ing objects and opening doors. They can be trained to
pull a wheelchair or brace a person so they can inde-
pendently transfer from one seat to another. Service
dogs can also be trained to bark for help, alert a family
member or caregiver in the event of an emergency and
lie down on its partner's chest to produce a cough.
Several organizations across Canada train service dogs
for people with ALS. Contact your Provincial ALS
Society for a list of trainers.
F6;.9 "<A2 <; A@@6@A6C2 E>B6=:2;AH
The most important messages to remember when it
comes to assistive equipment are to:
Think about both short- and long-term needs
Consult with appropriate healthcare professionals
about your equipment options and how to use what
you select
Learn from others who have come up with creative,
simple solutions
Seek information on financial assistance and equip-
ment loan programs to minimize your out of pocket
expenses
H#!E !#DIFICA(I#"'
'E&*ICE D#G'
See *42C8>= 4,
Sub-section Ada)-$'" -( S0a%%(0$'" P+(b%&, a'd
Ma$'-a$'$'" G((d N.-+$-$('.
would be compromised if you told your employer?
In Canada it is a legal requirement to accommodate
a person with a disability such as ALS. If you have
questions about this policy please contact your ALS
team social worker or consult an attorney specializing in
employment law.
Factors to consider before leaving work:
Do you have access to benefits?
Private Pension, Extended Health Care, Short
Term Disability, Long Term Disability,
Banked Sick Time, Medical EI, Canada
Pension Plan etc?
Does working bring meaning and quality to your life
that would be missing if you were unable to continue
working?
Have you made modifications, but are still unable to
carry out your job duties?
Do you have the energy to continue working?
What financial supports do you have? (RRSPs,
Savings, Investments, etc.)
It is highly recommended that you do not sign any-
thing regarding your termination without first getting
legal advice. You may be eligible for serance packages
and benefits.
Should you have any questions about what goverment
programs and benefits you may be eligible for, please
contact your social worker.
+5.A $?<A20A6<;@ D< -<B H.C2 );12?
$?<C6;06.9 ./<B? 246@9.A6<;?
The legislation for each province varies with respect to
employee rights. Consider getting advice from a lawyer
who specializes in human rights, provincial employ-
ment standards and labour legislation. Many provinces
have free or subsidized legal support available to resi-
dents. Consult with your ALS Clinic social worker
who may be able to answer some questions around rel-
evant legislation and provide information on local
resources.
);12?@A.;16;4 -<B? H2.9A5 I;@B?.;02 C<C2?.42
In order to maximize the benefits of your insurance
plan, it is important for you to keep a record of the
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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74
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aving diagnosis of ALS may result in
increased expenses. This may be true,
whether one remains at home, or if one
resides in a Long Term Care Facility. Caregiving sup-
port, equipment, medical supplies and medications for
symptom management are just some of the costs asso-
ciated with a diagnosis of ALS. These additional
expenses may not be covered by provincial programs,
extended health benefits or non-profit organizations
and therefore become the responsibility of the client
and their family. In some provinces, there are support
and funding resources available to assist with these
new expenses. It is important to check with the local
ALS Society and healthcare team around what sup-
ports are offered and how to access them. +74 0BB8B-
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<0=H ?4>?;4, 0 2A8C820; 502C>A <08=C08=8=6 @D0;8CH
>5 ;854.
For those who have been diagnosed with ALS and
continue to work, one of the things to consider is
when and what to tell your employer. This is a personal
decision depending on your and your employment situ-
ation.
In light of a diagnosis of ALS, you may wish to con-
sider exploring any extended healthcare 14=458CB you
might be eligible for. It is important to consider your
current needs in addition to what may be required in
the future, as there may be limits to what is provided.
Consultation with your healthcare team is recommend-
ed while investigating these resources. A;; >5 C78B 20=
14 3>=4 145>A4 C4;;8=6 H>DA 4<?;>H4A H>D 70E4
A#*.
+52; D< -<B (299 -<B? E:=9<F2??
Here are some factors to consider before notifying
your employer:
Are you working on a project that you want to finish,
before telling your employer?
Are your symptoms interfering with your ability to
perform your job?
Are you concerned that your employment future
I*I"G +I(H A' CA" BE E,$E"'I*E
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'EC(I#" 6
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name, phone number, identification, and group num-
ber of your insurance plan. You should also note who
the subscriber is (you or your spouse), his/her date of
birth, and social insurance number. Identify any other
insurance benefits you may have, such as a separate
prescription benefit card or a long-term-care policy.
5 H>D 70E4 <>A4 C70= >=4 8=BDA0=24 ?;0=, 34C4A-
<8=4 F7827 ?>;82H 8B ?A8<0AH 0=3 F7827 8B B42-
>=30AH; 2>=5DB8>= F8C7 C78B <0CC4A 20= A4BD;C 8=
18;;8=6 4AA>AB. Your insurance company customer
service representative can be helpful in identifying
which plan is to be billed first. Also keep up to date
on your insurance; if your coverage changes in any
way, notify all your doctors, medical suppliers, and
pharmacists immediately so that the next time you
access their services, you will have helped to prevent
billing errors.
C>=C02C H>DA 8=BDA0=24 2><?0=H 38A42C;H, 0=3 0B:
B?428582 @D4BC8>=B 01>DC H>DA 14=458CB. Always note
the date and the person providing the information.
Remember, having your benefits described over the
phone does not guarantee coverage. Your doctor may
be asked to write a letter of medical necessity and
complete specific forms to verify your medical condi-
tion and eligibility for whatever item or service is being
requested.
AB: 85 H>DA ?>;82H >554AB 20B4 <0=064<4=C. Case
managers either work for the insurance company or are
contracted by them to monitor and advocate for clients
whose costs are high or who have complicated needs.
They are often helpful in gaining access to little-known
insurance benefits, and reducing your overall out-of-
pocket expenses. Case management can be activated at
various stages of your illness, depending on how your
insurance company has defined the benefit. Having
direct communication with your insurance carrier will
help you to gain an overview of your policy and
remove the mystery of how your plan works.
Below is a guide that may be helpful when contacting
your insurance company. It is advised that you have all
of the specific information about your insurance plan
in front of you while calling. Feel free to ask what cer-
tain words or terms mean.
GA>D? 8=BDA0=24 20= 14 E0;D01;4 A4B>DA24. 5 H>D
70E4 6A>D? 8=BDA0=24 C7A>D67 H>DA 4<?;>H4A, H>D
<0H =443 C> B44: 03E824 5A>< 0 ;0FH4A D=8>= A4?-
A4B4=C0C8E4, >A B><4>=4 4;B4 H>D 20= CADBC C>
4=BDA4 C70C C78B 8=BDA0=24 2>E4A064 2>=C8=D4B C>
14 45542C8E4 F74= H>D 0A4. Should you experience
difficulties around coverage, you may wish to consult
an attorney about your right.
D?6C6;4 .;1 $?<=2?AF I;@B?.;02
Driving can sometimes require fast foot and hand reac-
tions. Speak with your doctor about whether you are
safe to continue driving. A driving test may be required
to verify your current abilities. Please speak with your
local health care provider about how to access these
services. Also, note that the legislation pertaining to
driving safety varies from province to province.
Should you have any questions about this, pleas e con-
tact your local motor vehicles department.
If you have specialized equipment, have made modifi-
cations or renovations to your home, as the result of
your diagnosis, you may need additional property insur-
ance. Review your current plan and speak with an
insurance representative to ensure coverage or if you
have any questions.
632 I;@B?.;02: 6C6;4 B2;236A@
*><4 ;854 8=BDA0=24 2><?0=84B >554A 0 ";8E8=6 14=-
458C" 540CDA4 C> ?4>?;4 F8C7 0 C4A<8=0; 38B40B4
4=01;8=6 C74< C> A4284E4 0 ?>AC8>= >5 C748A ;854
8=BDA0=24 ?083 C> C74< 8= 03E0=24, 3DA8=6 C74
H40AB 145>A4 C748A 340C7.
.70C B7>D;3 3> 85 0< 8=C4A4BC43 8=
64CC8=6 ;8E8=6 14=458CB?
Before you decide to apply for living benefits, C0;: C> 0
;0FH4A >A 022>D=C0=C 01>DC 0;; C74 58=0=280; 8<?;8-
20C8>=B. At the present time, the federal government is
not taxing living benefits, but anyone receiving a lump-
sum living benefit payment will no longer be eligible
for social assistance benefits. Talk to someone who can
look at your entire financial situation and advise you
about the best course of action.
00
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GB612 A< +5.A -=B
Is there an annual deductible?
Is there an annual out-of-pocket expense limit or
maximum? If I meet my limit, does my coverage
increase and to what extent?
Do I have a major medical plan? Is there an
annual or lifetime maximum?
Do I need to complete any claim forms?
Am I subject to preexisting condition regula-
tions?
Do I have a yearly or lifetime maximum limit?
dDA01;4 $43820; E@D8?<4=C (d$E) (D4BC8>=B
Does my plan cover DME? What about ventila-
tor coverage; is it under respiratory equipment or
DME?
What is the percentage of my coverage?
Is there a preferred provider I must see?
Is pre-authorization or a medical review
required?
'A4B2A8?C8>= (D4BC8>=B
3 Does my plan cover prescription drugs? What are the terms of this coverage, and is coverage different
based on using brand-name versus generic drugs?
3 Is there a specific pharmacy/supplier network I must use?
3 Are injectable medications covered under my plan?
3 Is there a limit on the amount of prescription drugs I can go through on this plan?
3 Is there coverage for all Health Protection Branch-approved drugs, or is coverage provided only for those
listed on your formulary (a list of drugs that an insurance policy covers)?
3 Does my plan offer a mail-order pharmacy option? How does this work?
GA>D? $43820; =BDA0=24 (D4BC8>=B
Examine your group insurance policy carefully and
call your insurance provider for detailed informa-
tion.
3 What are you entitled to?
3 Loss of income support: How much and for how
long?
3 Prescription Drugs: What drugs are covered?
What is the maximum? What is deductible?
3 Alternative Therapies: Are any, such as massage,
covered? Any limitations?
3 Home Care: How much and how long?
3 Assistive Equipment: What type and what limita-
tions?
3 Hospital: Private or semi-private coverage?
3 Are there any other benefits?
H><4 H40;C7 (D4BC8>=B
3 Does my plan have home health coverage? How
do I access this?
3 Is there a preferred home health care agency I
must use?
3 Is there private-duty nursing coverage at home?
Describe this benefit.
3 Does my plan offer case management? At what
point does case management get involved and for
how long?
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5 H>D 342834 C> 0??;H 5>A ;8E8=6 14=458CB, 48C74A
H>D >A H>DA ;0FH4A B7>D;3 C0;: C> H>DA 8=BDA0=24
064=C. Ask about the availability of living benefits
under your policy as all polcies are not the same. If
you are having trouble getting information about your
policy or getting living benefits, contact the help line at
the Canadian Life and Health Insurance Association: in
Toronto 416-777-2344; outside Toronto 1-800-268-
8099.
G?<B= $2;@6<; $9.;@
5 H>D 0A4 8= 0 2><?0=H >A >C74A 6A>D? ?4=B8>=
?;0=, 58=3 >DC 01>DC 0=H 270=64B C> H>DA ?;0= 0B 0
A4BD;C >5 0= A#* 3806=>B8B. To ensure that you get
your full entitlement, have these questions answered by
someone you trust.
3 Can you receive some of your pension before age 65,
if you are disabled, and unable to work?
3 Will payments be made to your spouse if you are no
longer alive?
If problems occur, you may need advice from a lawyer
with experience with group pension plans.
+> <8=8<8I4 C0G >= 340C7, H>D <0H F0=C C> <0:4
BDA4 C70C H>DA B?>DB4 8B C74 14=458280AH >5 H>DA
?4=B8>= ?;0=; otherwise your pension plan's value will
be part of your estate, and subject to probate fees.
Persons with ALS may qualify for a CPP disability pen-
sion. To be eligible for a Canada Pension Plan
Disability Pension, you must:
3 Be under 65 years of age
3 Stopped working because of your medical condition
3 Made enough contributions in four of the last six
years you were employed.
Or
Have paid into CPP for at least 25 years and made
valid contributions to the Plan in three of the last six
years.
.70C 85 0< 0;A403H A4C8A43 0=3 A4248E8=6
C''?
If you are receiving a CPP retirement pension you can
apply to have your retirement pension replaced by a
CPP disability benefit if you became disabled (accord-
ing to CPP legislation):
1. before you turned 65;
2. before your retirement pension began.
In addition, your application for CPP disability benefits
must be made within 15 months of the start of your
CPP retirement pension. Any CPP retirement pension
payments you have already received may be deducted
from your disability benefit.
C>=38C8>=B >5 E;86818;8CH
There are two conditions that you must meet:
d458=8C8>= >5 38B018;8CH
1. The disability must be considered to be
severe and prolonged as defined under CPP
legislation.
C'' 2>=CA81DC8>=B
2. You have to have made enough contribu
tions into the CPP while you were working.
(see below)
(Source: Service Canada website)
A Canada Pension Plan Disability Pension is payable
from the fourth month after you are deemed to have
become disabled. You may receive up to a maximum
C0DC8>=: There are organizations that buy life
insurance policies from people who are terminally ill in
return for a certain amount of cash now, usually sub-
stantially less than the death claim value of the policy,
the person with a life insurance policy names the
organization as beneficiary and gives up all rights under
the policy. When the person dies, the organization will
receive the full value of the policy.
In Ontario at the present time, it is illegal for any
organization not licenced to sell insurance policies to
do so. While there are no such organizations operating
in Ontario, many U.S. firms actively try to recruit
Canadian policy-holders. Talk to your lawyer or the
Canadian Life and Health Insurance Association before
becoming involved with such organizations.
$E"'I#" $A"'
Effective in 2006, the definition of family member was
expanded to include those who provide care for a
brother, sister, grandparent, grandchild, in-law, aunt,
uncle, niece, nephew, foster parent, ward, guardian, or a
gravely ill person, such as a neighbour or close friend,
who considers the claimant to be like a family member.
Benefits remain available to those caring for a parent,
child, spouse or common-law partner. Note that com-
mon-law partner means a person who has been living
in a conjugal relationship with that person for at least
one year.
Compassionate care benefits can be paid even if the ill
family member does not live in Canada. For additional
information visit www.hrsdc.gc.ca/en/ei/types/com-
passionate_care.shtml.
There may be a number of ways to more effectively
manage your tax situation resulting in greater after-tax
income. Talk to your accountant and/or financial advi-
sor about your options.
D6@./696AF (.E C?216A
+74 d8B018;8CH +0G CA438C 8B 0 =>= A45D=301;4
2A438C 5>A 4;8681;4 8=38E83D0;B >A C748A A4?A4B4=C0-
C8E4B. It reduces income tax payable on your income
tax return. Eligibility requirements are outlined on the
application (T2201) which is available on the Revenue
Canada website. The application must be completed
and signed by your doctor. It is advised that you send
your application in prior to tax season to avoid delays.
Application processing times vary. Please keep a copy
for your records.
&C74A +0G CA438CB:
Caregiver Tax Credit
Attendant Care Expense Deduction
Fuel Rebate (provincial and federal)
Medical Expense Tax Credit
You may also be eligible to claim certain medical
expenses. Information on eligibility for tax programs
can be found on the Revenue Canada website:
http://www.cra-arc.gc.ca/disability/. Your financial
advisor, accountant, or social worker can assist you
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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of 12 months of retroactive payments. Like most pen-
sions, your CPP Disability Pension is considered tax-
able, subject to your total income.
C<:=.@@6<;.A2 C.?2 B2;236A@ 3<? C.?246C2?@
Eligible Canadian workers who take time off work to
care for a gravely ill family member can receive up to
six weeks of employment insurance benefits over a
period of six months and will have their jobs
protected.
To qualify for compassionate care employment insur-
ance benefits, applicants must have worked 600 hours
in the previous 52 weeks and show that regular weekly
earnings have decreased by 40%. They must also pro-
vide a medical certificate to show that the family
member has a high risk of death within 26 weeks.
Compassionate care includes providing emotional
support, arranging for third-party support or directly
providing the care. Benefits may be shared among
eligible family members.
(56;4@ A5.A C.; C5.;42 E9646/696AF
3<? . C$$ D6@./696AF $2;@6<;:
Those receiving a CPP Disability Pension must noti-
fy the Canada Pension Plan of any changes that
might affect their continuing eligibility for benefits.
This includes:
3 An improvement in your medical condition
3 A return to full, part-time, volunteer or trial period
of work
3 Attendance at school or university; trade or techni-
cal training
3 Any vocational rehabilitation
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with the process of applying for any such benefits.
!6;6:6G2 (.E (5?<B45 I;0<:2 '=96AA6;4
=2><4 B?;8CC8=6 A43D24B 0 50<8;H'B C>C0; 8=2><4
C0G by dividing income among various family mem-
bers, using the low tax rates of family members who
have little other income to offset the higher tax rates of
those with higher income. This has to be done in ways
that will "attribute" less income to the higher income
earner(s) in the family, according to CRA, such as the
following:
3 Estate freezing
3 Transfer property at fair market value
3 Lend or gift assets to generate business income, or
income on income
3 Gift funds to child turning 17
3 Earn capital gains for children
3 Reasonable salaries (for example, person with ALS
paying spouse as a caregiver is a deductible expense
to the person with ALS)
3 High taxpayer pays all household expenses
3 Deposit child tax credits in child's bank account
3 Contribute to spousal RRSP
3 Assign one half of CPP benefits to spouse
This list is not exclusive. If substantial funds are
involved, or even if funds are minimal, see a profes-
sional tax expert who specializes in disability issues.
(.E <; D22:21 D6@=<@6A6<; <3 A@@2A@ <;
D2.A5
At the date of death, the CRA requires one tax return
for income earned to the date during the year and to
account for the tax that is applicable on all of the
increased values of the deceased person's properties
and other assets. There are certain tax-free "roll over"
provisions for property left to a spouse, or spousal
trust. Also, dividend-paying shares may incur a double
tax unless appropriate action is taken. B4 BDA4 C> B44:
03E824 5A>< 0 ?A>54BB8>=0; 022>D=C0=C >= C74B4
<0CC4AB.
$?</.A2 F22@
A C4AC85820C4 >5 A??>8=C<4=C >5 EBC0C4 +ADBC44
F8C7 0 .8;; validates a will. Upon issuing this certifi-
cate, the Estate Court charges a tax rate that varies
from province to province. Probate fees are decreased
by reducing the amount of the estate, such as making
life insurance payable to a spouse instead of to the
estate.
).'. E@A.A2 (.E
If you were born in the U.S. and own property in the
U.S., or own U.S. securities registered in your name,
your beneficiaries may be required to pay U.S. taxes on
the estate.
Even if you have been a Canadian citizen for most of
your life, when the U.S. Internal Revenue Service (IRS)
learns of a person's death, they will apply an estate tax
on the total estate, regardless of what countries the
assets are in. Assets will then be held by the IRS until
this tax is paid. There are easy ways to avoid this tax. If
this could happen to you, B44 0 ?A>54BB8>=0;
022>D=C0=C F7> 8B 50<8;80A F8C7 ,.*. 4BC0C4 C0G4B.
(.E-E3320A6C2 +699@
There are numerous estate planning alternatives,
including naming a spouse as beneficiary to all life
insurance and pension plans. Also multiple testamen-
tary trusts, an exclusive spousal trust and trustee pow-
ers to authorize actions to minimize tax are other tech-
niques. Mentioning these plans in a will helps to
ensure that your plan will be carried out according to
your wishes. B4@D4BCB C> 0 E>;D=C0AH >A60=8I0C8>=
20= 0;B> A43D24 4BC0C4 C0G. Again, if substantial
amounts are involved, it is probably wise to consult
with a professional estate planning accountant or estate
planning lawyer.
Review your Will and Powers of Attorney to ensure
that these reflect your current wishes. Keep reading
for more information about living wills and powers of
attorney.
$<D2? <3 AAA<?;2F
A Power of Attorney is a document that allows an
adult to appoint an individual to make decisions
regarding their financial and legal affairs on their
behalf. This attorney is authorized to act when the
adult becomes incapable, due to limited mental ability
or illness. You may choose one or more persons to act
F)()&E $A""I"G D#C)!E"('
for your representative to make decisions about your
financial matters.
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In some provinces, in the event you have not legally
appointed an alternate health care decision maker and
you require someone to make such decisions on your
behalf, a Temporary Substitute Decision Maker
(TSDM) will be appointed by your healthcare team. A
Temporary Substitute Decision Maker is chosen from a
predetermined list and must meet certain criteria. The
TSDM is obligated to make decisions that are in line
with your wishes. The legislation surrounding TSDM
varies from province to province. If you are uncertain
as to who your TSDM will be, please consult with your
healthcare providers.
I;3<?:6;4 -<B? A9A2?;.A2 D206@6<; !.82?
There are numerous ways in which you can inform
your family, Power of Attorney for Health Care,
Representative or TSDM. Below please find a summa-
ry of each.
A #8E8=6 .8;;, >A A3E0=24 C0A4 ';0=, 8B 0 3>2D-
<4=C C70C >DC;8=4B H>DA 14;845B, E0;D4B 0=3 F8B74B
A460A38=6 5DCDA4 740;C720A4 CA40C<4=C. A ;8E8=6
F8;; >A 03E0=24 20A4 ?;0= 8B DB43 1H H>DA 0;C4A=0C4
3428B8>= <0:4A 0=3 H>DA 740;C720A4 C40< 0B 0
6D834 C> D=34ABC0=38=6 F70C H>DA F8B74B 0A>D=3
5DCDA4 8=C4AE4=C8>=B <867C 14 B7>D;3 H>D 14
D=01;4 C> 2><<D=820C4 C74< H>DAB4;5. This is a
general guide about your wishes and may not cover
every possible outcome. That is okay. It will be up to
your medical team and your alternate decision maker to
determine the most appropriate course of action that
is in line with your values and beliefs. This is why it is
important to share your values and beliefs with your
healthcare team and your alternate decision maker.
B4;>F 0A4 B><4 C78=6B C> 2>=B834A F74= FA8C8=6
H>DA ;8E8=6 F8;; >A 03E0=24 20A4 ?;0=:
What makes my life meaningful?
What and who do I care about in my life?
How do I define quality in my life?
What medical interventions would help maintain
quality of my life?
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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as your power of attorney. If you select more than
one person, you must indicate whether any named
individual can make decisions for you alone, or
whether they must make decisions as a group.
$<D2? <3 AAA<?;2F 3<? H2.9A5 C.?2
In some provinces, a Power of Attorney document can
be used to appoint an attorney who can make health
care decisions your behalf should you be unable to.
This is called a Power of Attorney for Health Care
(PAHC). Your Power of Attorney for Health Care has
the legal and ethical obligation to make decisions about
your health care that respect your wishes. Therefore, it
is important to have open discussions around what
those wishes might be.
&2=?2@2;A.A6<; A4?22:2;A@
In other provinces, alternate decision makers are
appointed through what are known as Representation
Agreements. Representation Agreements are legal doc-
uments that appoint another individual to make health-
care decisions on your behalf, should you be unable to.
There are two parts to a Representation Agreement;
each providing different powers.
Section 7: Allows you to name an alternate decision
maker who will have the authority to make decisions
around routine management of your financial affairs,
your personal care and some health care treatment. It
does not allow for your representative to make health
care treatment decisions that involve life sustaining or
life ending interventions.
Section 9: Allows you to appoint a representative to
make decisions on your behalf around personal care
and health care treatments; including decisions pertain-
ing to life sustaining and life ending interventions. A
Section 9 Representation Agreement does not allow
+74 '>F4AB 0BB>280C43 F8C7 0 '>F4A >5
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i.e. would I want life sustaining interventions such as
CPR, Life Support? Or would I prefer a comfort care
approach to end of life?
Remember, an advance care plan or living will only
comes into effect if you are unable to communicate
your wishes to your healthcare team.
&=24 0608=, ;468B;0C8>= 8= 4027 ?A>E8=24 E0A84B, 0B
3>4B C4A<8=>;>6H. If you have any questions about
how or when a living will or advance care plan is used,
or would like help creating one, please speak with your
healthcare provider.
A1C.;02 C.?2 D6?20A6C2@
In some provinces one can create a legally binding
document that acts as direct communication to your
doctor and healthcare team. These are sometimes
known as Advanced Directives. These directives, out-
lining your wishes, act as instructions to your health-
care team. The directive only comes into effect if it
relates to the current medical situation and you are
unable to reliably communicate your wishes. The
directive may take legal precedence over your alternate
decision maker as it is considered direct communica-
tion of your wishes.
.7H B7>D;3 2><?;4C4 C74B4 3>2D<4=CB?
There are benefits to having these conversations and
completing this documentation. For instance, these
documents provide an opportunity for you to express
your thoughts and wishes. They also help to reduce
the stress your family and an alternate decision maker
may experience in the event they have to make a deci-
sion on your behalf. C 8B 03E8B43 C70C H>D 1468= C78B
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740;C720A4 ?A>E834AB.
As a person with ALS, you will experience many
changes in health and functional status, and as such,
your perceived quality of life may also change.
Therefore, what you decide you want today, may
change a year from now. />D <0H 270=64 H>DA ;8E-
8=6 F8;;, 03E0=24 20A4 ?;0= >A 03E0=24 38A42C8E4 0C
0=H C8<4. C 8B 03E8B01;4 C> A4E8B8C H>DA ?;0==8=6
3>2D<4=C0C8>= >5C4= C> 4=BDA4 C70C 8C 022DA0C4;H
A45;42CB H>DA F8B74B. = C74 4E4=C H>D 342834 C>
270=64 H>DA ?;0= please ensure that all pre-existing
versions are destroyed. It is also important to notify
those involved in your care of any changes to your
plan and redistribute the revised plan accordingly.
d4?4=38=6 >= F7827 ?A>E8=24 H>D ;8E4 8=, H>D <0H
=443 C> 2>=BD;C F8C7 0= 0CC>A=4H 8= >A34A C> 2A40C4
B><4 >5 C74B4 3>2D<4=CB. 5 H>D 0A4 D=BDA4 7>F
C> ?A>2443, ?;40B4 2>=C02C H>DA 740;C720A4
?A>E834A.
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d>2D<4=CB?
Advanced Care Planning documents are often available
at no charge through your ?A>E8=280; 6>E4A=<4=C
and can be downloaded on-line. A sample healthcare
directive created specifically for palliative care patients,
is available on-line at www.palliative.info, and an
advance care directive form designed at the University
of Washington specifically for patients with ALS
(focusing on feeding tubes and invasive mechanical
ventilation choices). This form is a figure contained
in:
Benditt, Smith, and Tonelli (2001). Issues and
Opinions: Advance Care Planning in ALS. Muscle
and Nerve, 24: 1706-1709.
Contact your ALS Society office for a copy of this
form.
EBC0C4 ?;0==8=6 8B C74 ?A>24BB 1H F7827 H>D 1468=
C> 64C H>DA 58=0=280; 05508AB 8= >A34A. Estate plan-
ning can include the creation of a Will, examination of
assets and liabilities and the setting up of Trusts.
Estate planning may reduce the amount of probate
fees and taxes that your estate would otherwise pay.
Estate Planning also gives you an opportunity to
express your wishes for once you have passed away.
Having an Estate Plan may anticipate different scenar-
ios, but it is important to think about updating it
whenever your financial or personal circumstances
change. You may also want to change your Estate Plan
if there is a change in the beneficiaries.
An Estate Plan may also document what your wishes
are for once you have passed away. This can include
any spiritual or religious service you may wish to have
E'(A(E $A""I"G
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in your honour. Having an Estate Plan provides guid-
ance to your family during a time of great loss.
B4;>F ?;40B4 58=3 B><4 0338C8>=0; 8=5>A<0C8>= >=
2A40C8=6 0 .8;; 0=3 B><4 2>=B834A0C8>=B 5>A F74=
?;0==8=6 H>DA EBC0C4.
A Will is a legal document that provides instructions to
your loved ones on how some of your assets and liabili-
ties (i.e. property, investments, money) are distributed
once you have passed. A Will may minimize the addi-
tional income taxes, and probate fees payable upon your
death. It may also minimize taxes payable by your benefi-
ciaries on future income. A Will may not cover all assets
and investments. As a result, it is important to plan your
Estate in order to ensure that your wishes are met with
minimal impact on your beneficiaries.
$9.;;6;4 A +699
To plan a will you will need to:
Make a list of all assets and liabilities including addi-
tional taxes due on your death
Determine who your beneficiaries will be, such as
spouse, children, other relatives, friends, charities, etc.
If you have minor children, appoint a Guardian in your
Will.
Consider if you want to appoint a Guardian of the
Estate. This guardian can receive funds from your
executor for the benefit of your children. The person
you choose may be the same guardian you choose for
your children or someone different.
Consider tax reduction strategies, such as donations to
charities
Choose your estate trustee, such as your spouse or
trusted friend. A lawyer, accountant or trust company
could be considered for more complex situations
!.86;4 A +699IF<?:.9 &2>B6?2:2;A@
A Will is only valid if it meets the requirements set out
in the Wills legislation in the province or territory in
which you live. Generally, the normalities include dating
the Will and having the maker of the Will (the
Testator) sign it in the presence of two witnesses, who
should not be beneficiaries under the Will. The
witnesses must also sign the document in the pres-
enceof the Testator and each other.
To avoid possible confusion in the future, only one
copy of a Will should be signed. Many provinces also
allow for the preparation of a holograph Will,
which is a document that is completely in the hand-
writing of the Testator and is dated and signed by the
Testator. However, because of many drafting and
other problems, holograph Wills are often a source of
conflict and litigation, so their use should be
discouraged.
For similar reasons, the use of Will kits is not recom-
mended. Given the broad range of legal areas and
issues that must be considered in
planning and preparing a Will, some of which are
outlined here, there is really no substitute for the pro-
fessional legal advice of a lawyer
whose practice is focussed on will, estate and tax
planning.
You must also have the appropriate mental capacity
to make a Will and must sign it willingly, without
duress or improper influence by other individuals.
Otherwise, the Will can be challenged and would be
of no effect. For this reason, it is important to have a
Will prepared while you are competent and capable,
to
ensure that your intended beneficiaries will benefit as
you direct. It is also generally recommended that you
review your Will.
A==<6;A:2;A <3 EE20BA<?@
An important advantage of making a Will is that it
enables you to decide who will be the executor
who will administer your estate.
The executor of the estate plays an important role,
since the executor is responsible for many tasks,
which include collecting the assets of the estate, pay-
ing taxes and any other liabilities, and distributing the
assets according to the
terms of the Will.
Given the significance of an executors duties and
obligations, the selection of the executor should be
carefully considered. When choosing an executor, you
should consider certain factors, including:
A'( +I A"D (E'(A!E"(
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C<;@612?.A6<;@
On top of coping with the day-to-day challenges of liv-
ing with a progressive illness like ALS, financial and
legal planning can seem overwhelming. However, it is
very important to consider these aspects of life for
yourself as well as your loved ones. Perhaps asking a
family member or friend to help get you organized or
do research on your health benefits and legal rights can
make it more manageable.
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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The complexity of your assets and your estate
How your estate is to be distributed. A Will leaving
only outright gifts to intended beneficiaries will gener-
ally be less complex to administer than an estate
under which trusts are to be established for one or
more beneficiaries
The age of the proposed executor. It is generally
preferable to name an executor who is younger than
you, as this makes it more likely that your
executor will be available and able to act when and
for as long as required
whether a proposed executor has the necessary skills
and abilities to administer your estate effectively
Where the proposed executor lives. Executors who
do not reside in Canada have to post a bond as secu-
rity before being allowed to administer an estate and
can create considerable complexity for the estate and
for the beneficiaries since they may also cause the
estate to be non-resident for tax purposes
The trustworthiness of the proposed executor.
C 8B 8<?>AC0=C C> A4E84F H>DA .8;; 4E4AH 54F H40AB
C> <0:4 BDA4 C70C 8C 2>=C8=D4B C> A45;42C H>DA
F8B74B.
If one does not have a Will, your assets and liabilities
will be divided according to relevant legislation and
this may not happen the way you would have wanted.
*7>D;3 H>D 70E4 @D4BC8>=B 01>DC 7>F C> ?A4?0A4
0= EBC0C4 ';0=, ?;40B4 2>=BD;C F8C7 0 ;0FH4A >A
4BC0C4 ?;0==4A.
)@6;4 -<B? +699 A< !.82 (5.A '=206.9 G63A
Many people choose to make provision in their will to
contribute a special bequest to a cause close to their
heart. Bequests allow people to name a charity of
their choice as a beneficiary and to make a financial
contribution from their estate to the charity that is
often far greater than would have been possible dur-
ing their lifetime.
family member or friend to help get you organized or
do research on your health benefits and legal rights
can make it more manageable.
A' !.;.42:2;A GB612@ .;1 C<=6;4 D6A5
C5?<;60 I99;2@@
A<H>CA>?782 #0C4A0; *2;4A>B8B
By Robert G. Miller, MD, Deborah Gelinas, MD, &
Patty O'Connor, RN.
This book is one of the first in a serious sponsored by
the American Academy of Neurology design to assist
people with neurologic diseases and their families. The
authors have included chapters about the disease itself,
specific symptoms and how they can be managed, how
multidisciplinary centres work, how voluntary health
agencies help, how computers can help and more.
Demos Medical Publishing, Inc.
386 Park Avenue South
New York, NY 10016
ISBN: 1932603069
A<H>CA>?782 #0C4A0; *2;4A>B8B: A GD834 f>A
'0C84=CB 0=3 f0<8;84B, 3A3 E38C8>=
Edited by Hiroshi Mitsumoto, MD
This comprehensive guide covers every aspect of the
management of ALS. Beginning with discussions of its
clinical features of the disease, diagnosis, and an
overview of symptom management, major sections
deal with medical and rehabilitative management, living
with ALS, managing advanced disease and end-of-life
issues, and resources that can provide support and
assistance.
Demos Medical Publishing, Inc.
386 Park Avenue South, Suite 301
New York, NY 10016
ISBN:1932603727
www.demosmedpub.com
A#*: $08=C08=8=6 $>18;8CH
This is a guide to physical therapy and occupational
therapy. It illustrates techniques for energy conserva-
tion, managing architectural barriers and employing
adaptive devices.
ALS Neurosensory Center
6501 Fannin Street, Room B310
Houston, TX 77030
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
00
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A' !2160.9 (2EA/<<8@
A<H>CA>?782 #0C4A0; *2;4A>B8B
By Hiroshi Mitsumoto, M.D, et al
Oxford University Press
2001 Evans Road
Gary, NC 27513
(800) 451-7556
ISBN: 0803602693
A<H>CA>?782 #0C4A0; *2;4A>B8B: d806=>B8B 0=3
$0=064<4=C 5>A C74 C;8=8280=
Edited by: Jerry M. Belsh, MD and Philip L.
Schiffman, MD
Futura Publishing Company, Inc.
135 Bedford Road
P.O. Box 418
Armonk, NY 10504-0418
(914) 273-1014
ISBN: 0879936282
d4<4=C80 0=3 $>C>A %4DA>= d8B40B4
Edited by Michael J. Strong
Informa Healthcare (2006)
This book is the single authoritative reference on the
current understanding of frontotemporal dementia in
ALS.
ISBN: 0415391660
$>C>A %4DA>= d8B>A34AB
Edited by:
Pamela J. Shaw, MD
Michael J. Strong, MD
Butterworth-Heineman/Elsevier, Inc.
Independence Square West
Philadelphia, PA 19106
(215) 238-2239
ISBN: 0750674423
'0;;80C8E4 C0A4 8= A<H>CA>?782 #0C4A0; *2;4A>B8B:
$>C>A %4DA>= d8B40B4
By David Oliver, Gian Domenico Borasio and Declan
Walsh
Oxford University Press
ISBN 0192637667
$&I"( !A(E&IA'
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00
85
BA40C74 E0BH: )4B?8A0C>AH C0A4 8=
%4DA><DB2D;0A d8B>A34AB (2009)
This book can be downloaded at www.mda.org/publi-
cations/PDFs/BreatheEasy/Booklet.pdf. It covers
respiratory management options, equipment, etc. in
ALS as well as muscular dystrophy.
MDA-ALS Division
3300 East Sunrise Drive
Tuscon, AZ 85718-3299
C><<D=820C8>= 0=3 *F0;;>F8=6 *>;DC8>=B 5>A C74
A#*/$%d C><<D=8CH
Edited by Marta S. Kazandjian, SLP, CCC
This invaluable resource manual enables the person
with ALS/MND, caregivers and family to make
informed decisions to best manage communication and
swallowing difficulties as they arise and illustrates how
these solutions can be used to support and resolve the
individual's needs.
Singular Publishing Corp.
San Diego, CA
(800) 347-7707
ISBN: 1565938089
EE4AH30H #854 F8C7 A#*: A 'A02C820; GD834
Produced by MDA-ALS Division, it is a practical guide
that answers many questions about daily living, equip-
ment, therapies, and accessibility that arise over the
course of the disease. It includes many helpful photos
and diagrams. It can be downloaded at www.als-
mda.org/publications/everydaylifeals/ or for $15 USD
can be purchased by contacting (800) 572-1717 or pub-
lications@mdausa.org.
MDA-ALS Division
3300 East Sunrise Drive
Tuscon, AZ 85718-3299
GD834 C> A#* '0C84=C C0A4 5>A 'A8<0AH C0A4
'7HB8280=B (Cd-)&$)
Produced by the ALS Society of Canada, this resource
is designed to inform primary care doctors who have
patients with ALS to ensure continuation of quality
care in the community between visits to ALS special-
ists. A person with ALS who receives care at an ALS
specialty clinic can request a CD-ROM be sent to their
family doctor. For patients who do not attend ALS
specialty clinics, a copy of this resource can be
obtained from the local Provincial ALS Society, or by
downloading it at http://www.als.ca/publications-and-
resources/physician-cd
#4B +DA=4A A#* f>D=30C8>= )4B>DA24 GD834
The third edition of the Les Turner ALS Foundation
Resource Guide provides information and resources
for ALS patients, family caregivers and health profes-
sionals. Assembled by the team members of the Lois
Insolia ALS Center at Northwestern University's
Feinberg School of Medicine, the Resource Guide is
available online for viewing, downloading and printing
with Adobe Acrobat or you may order the print ver-
sion through the Foundation.
To order a printed and bound copy of the Resource
Guide, please contact Claire Owen, Director of Patient
Services at cowen@lesturner.org (847) 679-3311.
#854 >= .744;B-f>A C74 A2C8E4 .744;2708A ,B4A
By Gary Karp
This book offers practical ways to adapt and optimize
the quality of your life. It covers subjects such as skin
care, bowel and bladder care, sexuality, home access,
maintaining a wheelchair and dealing with insurance
problems.
O'Reilly and Associates, Inc.
LaVegne, TN
(800) 998-9938
ISBN: 1565922530
#8E8=6 F8C7 A#* $0=D0;B
Six manuals on managing ALS to assist patients, their
families, and health care practitioners:
1. What's it all About?
2. Coping with Change
3. Managing Your Symptoms and Treatment
4. Functioning When Your Mobility is Affected
5. Adjusting to Swallowing and Speaking
Difficulties
6. Adapting to Breathing Changes
The ALS Association
27001 Agoura Road, Suite 150
Calabasas Hills, CA 91301-5104
(800) 782-4747
(manuals are free of charge to ALS families and
healthcare professionals caring for persons with ALS)
$44C8=6 C74 C70;;4=64-#8E8=6 F8C7 C7A>=82 ;;=4BB
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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By Audrey Kron, MA, CGP
Discounts on orders of 10 or more copies are available
through the publisher.
Center for Coping with Chronic Illness
West Bloomfield, MI
(248) 626-6960
$>C>A %4DA>= d8B40B4: A f0<8;H A5508A
By David Oliver, MD
Sheldon Press
36 Causston St.
London SWIP 4ST
ISBN: 0859699773
)40;8C84B 8= C>?8=6 F8C7 'A>6A4BB8E4
%4DA><DB2D;0A d8B40B4B
This book brings together 51 eminent authorities on
ALS focusing on a variety of different coping strate-
gies to offer to patients and families, as well as health
professionals
Charles Press Publishers, Inc.
P.O. Box 15715
Philadelphia, PA 19103
ISBN: 0914783203
.4 AA4 %>C A;>=4: #40A=8=6 C> #8E4 F8C7 C7A>=82
;;=4BB
By Sefra Kobrin Pitzele
This book offers practical strategies and inspiration to
people with chronic illness; not specific to ALS.
Workman Publishing
708 Broadway
New York, NY 10003
(212) 254-5900
ISBN: 0894801392
C<<8 B<<8@
+74 dHB?70680 C>>:1>>:: GA40C +0BC8=6 0=3
%DCA8C8>DB )428?4B 5>A '4>?;4 F8C7 *F0;;>F8=6
d85582D;C84B
By Elaine Achilles, Ed.D.
Cumberland House Publishing
431 Harding Industrial Drive
Nashville, TN 37211
ISBN: 158182348
E0BH C> *F0;;>F, E0BH C> C74F C>>:1>>:
By Donna L Weihofen, RD, Joanne Robinson, PhD,
and Paula Sullivan, MS
This book offers over 150 tasty and nutritious recipes
with simple instruction for tailoring food textures from
very easy-to-chew to soft and smooth. All recipes con-
tain nutritional information per serving.
Wiley Publishers
ISBN: 0471200743
$40;B 5>A E0BH *F0;;>F8=6
Includes a collection of recipes, swallowing tips, help-
ful hints for increasing calories and sample menus
developed by ALS patients and their families.
ALS Clinic
6501 Fannin, Room B 310
Houston, TX 77030
%>=-C74F C>>:1>>:
By J. Randy Wilson
A discounted price is available through the publisher
on orders of 10 or more copies.
Wilson Publishing, Inc.
Glenwood Springs, CO
(800) 843-2409
'>C H>;34AB 0=3 #>E4 H0=3;4B (2>>:1>>:)
By Lynda Cabela (deceased person with ALS)
Cabelas Furniture Store
602 Second Street
Cappell, NE 69129
C.?246C2? B<<8@ .;1 GB612@
A C0A468E4ATB GD834: A H0=31>>: 01>DC 4=3->5-
;854 20A4
This book provides family and inforamtl caregivers te
medical and nursing information they need in easily
understood language. This guide will also help build a
strong palliative care team who are effective in provid-
ing physical, spiritual and emotional support.
Published by the Canadian Hospice and Palliative Care
Association (CHPCA) and athe Military and
Hospitaller Order of St. Lazarus of Jerusalem. To
order, visit http://www.chpca.net/.
A GD834 C> C0A468E4A, />D AA4 %>C A;>=4
#8E8=6 #4BB>=BM
1-877-237-4363 (INFO), or download from www.liv-
ing-lessons.org
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00
87
C0A468E8=6: +74 *?8A8CD0; !>DA=4H >5 #>E4, #>BB
0=3 )4=4F0;
By Beth Witrogen McLeod
This book is written by a journalist with plenty of
experience with family caregiving. Beth was a caregiver
for both parents, one with cancer and the other ALS.
Wiley and Sons Publishing
ISBN: 0471254088
+74 C><?;4C4 B43B834 C><?0=8>=-%>-%>=B4=B4
A3E824 >= C0A8=6 5>A C74 *4A8>DB;H ;;
By Roger McFarlane and Philip Bashe
This comprehensive and compassionate handbook is
an excellent guide for home caregiving to the seriously
sick and dying. It includes field-tested practical advice
and support for all phases of illness, from the onset of
symptoms through terminal phases, and necessary
steps after death. This book is recommended both for
home caregivers and as a reference book for public and
medical libraries.
Simon and Schuster
New York, NY
ISBN: 0684843196
+74 C0A468E4A *DAE8E0; *4A84B
By James R. Sherman, PhD
This series includes the following titles:
'>B8C8E4 C0A468E4A ACC8CD34B
ISBN: 0935538186
+74 $0682 >5 HD<>A 8= C0A468E8=6
ISBN: 0935538194
C>?8=6 F8C7 C0A468E4A .>AA84B
ISBN: 0935538208
CA40C8E4 C0A468E8=6
ISBN: 0935538178
'A4E4=C8=6 C0A468E4A BDA=>DC
ISBN: 093553816X
Pathway Books
Golden Valley, MN
(612) 377-1521
+74 C>DA064 +> #0D67: HD<>A, H>?4, 0=3
H40;8=6 = +74 f024 &5 d40C7 A=3 dH8=6
By Allen Klein
This remarkable book is a poignant and inspirational
reminder of the life-affirming nature of the human
spirit, even under the most difficult circumstances. In
the words of cartoon character Roger Rabbit,
"Sometimes a laugh is the only weapon we have."
Klein, uses a simple and approachable format to share
stories of how people faced with death and illness use
laughter for many purposes. It can serve as a defense
mechanism, a tool for encouragement, a bonding
between those in difficult situations, and a reminder
that life goes on despite the worst. At its best it is a
tool for coping, communicating, and connecting.
Jeremy P. Tarcher/Putnam
ISBN: 0874779294
+74 C><5>AC >5 H><4: A= ;;DBCA0C43 *C4?-1H
*C4? GD834 5>A C0A468E4AB, 2=3 E38C8>=
By Maria M. Meyer with Paul Derr, RN
In this book, the authors provide an excellent guide to
caregiving in the home. A chronological structure is
used to define preparation for caregiving, the day-to-
day expectations, and a listing of numerous resources
to augment the content.
CareTrust Publications LLC
Portland, OR
ISBN: 0966476735
f0<8;H C0A468E4A'B GD834: +74 H><4 H40;C7 C0A4
E558284=2H *HBC4< C70C )40;;H .>A:B
By Joan Ellen Foyder
An easy step-by-step guide to caring for a patient at
home. This book helps take the frustration out of
home patient care by solving hundreds of everyday
problems.
The Futuro Company
5801 Mariemont Avenue
Cincinnati, OH 45227
(513) 271-3782
ISBN: 0961739207
+74 f>DA +78=6B +70C $0CC4A $>BC
A B>>: A1>DC #8E8=6
By Ira Byock, MD
Four simple phrases -- "Please forgive me," "I forgive
you," "Thank you," and "I love you" -- carry enormous
power. In many ways, they contain the most powerful
words in our language. These four phrases provide us
with a clear path to emotional wellness; they guide us
through the thickets of interpersonal difficulties to a
conscious way of living that is full of integrity and
grace. In The Four Things That Matter Most, Dr. Ira
Byock, an international leader in palliative care, teaches
5>A *><4>=4 .7> B *4A8>DB;H ;;
By Cappy Capossela and Sheila Warnock
Drawing on the authors' personal experience in form-
ing a caregiving network to care for a friend, this is a
step-by-step guide to the group approach. This book
offers valuable guidelines, compassionate suggestions,
and a workbook that offers support to help free the
person who is ill from worry and the primary caregiver
from burnout.
Simon and Schuster
1230 Avenue of the Americas
New York, NY 10020
(Can also be ordered through www.sharethecare.org)
ISBN: 0684822367
.70C 5 C'B %>C A;I748<4A'B? A C0A468E4A'B GD834
C> d4<4=C80
Edited by Lisa Radin and Gary Radin
Foreword by Murray Grossman, M.D., Ed.D
Although today the public all too often associates
dementia symptoms with Alzheimer's disease, the med-
ical profession can now distinguish various types of
"other" dementias that also undermine cognitive abili-
ties, often with onset at a younger age. This book is the
first comprehensive guide dealing with frontotemporal
dementia (FTD), one of the largest groups of non-
Alzheimer's dementias. The contributors to this book
are either specialists in their fields or have exceptional
hands-on experience with FTD sufferers. This much-
needed resource work, the first of its kind, provides a
wealth of real and practical information to both
healthcare professionals and caregivers of someone
suffering from FTD.
Prometheus Books
ISBN: 1591020875
E;1-<3-632 B<<8@ .;1 GB612@
dH8=6 0C H><4: A f0<8;H GD834 5>A C0A4 G8E8=6
By Andrea Sankar
ISBN: 0801842301
dH8=6 .4;;
By Ira Byock, MD
Dr. Byock, one of America's leaders in palliative care
medicine, shows us that much important emotional
work can be accomplished in the final months, weeks,
and even days of life. Dying Well brings us to the
homes and bedsides of families with whom Dr. Byock
has worked, telling stories of love and reconciliation in
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us how to practice these life-affirming words in our
day-to-day lives and helps us to forgive, appreciate,
love, and celebrate one another more fully. Distilled
from experiences of people who were forced by seri-
ous illness to face the impending end of their relation-
ships, these stories convey practical wisdom that can
help any person at any time say and do the things that
really matter most in their own life. Dr. Byock asks,
"Why wait until we or someone we love is dying to say
the things that matter most? It would be great if this
nugget of 'hospice wisdom' became part of public dis-
course and part of our culture."
Free Press/Simon and Schuster
(see www.fourthings.org)
ISBN: 0743249097
+74 H4;?4A'B !>DA=4H
By Dale G. Larson, PhD
This book is intended for volunteers, nurses, physi-
cians, social workers, clergy, counselors and others who
work on the front lines of caregiving, but may apply
also to family caregivers. Most examples in the book
are drawn from Dr. Larson's work in hospice, psy-
chotherapy, and oncology.
= C74 *703>FB: #8E8=6 0=3 C>?8=6 F8C7 0 #>E43
&=4'B C7A>=82 ;;=4BB
By Dr. David Luterman
Research Press
2612 North Mattis Avenue
Champaign, IL 61821
ISBN 0878223444
Dr. Luterman is a professor of communication disor-
ders who has given workshops on the impact of dis-
abling disease on the patient's family. The book details
his family's struggle with his wife's multiple sclerosis.
Jade Press
Box 822
Bedford, MA 01730
ISBN: 0964486202
$08=BC0H: f>A C74 .4;; *?>DB4 >5 C74 C7A>=820;;H
;;
By Maggie Strong
Bradford Books
ISBN: 0965717909
*70A4 C74 C0A4: H>F C> &A60=8I4 0 GA>D? C> C0A4
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the face of tragedy, pain, and conflict. It provides a
blueprint for families, showing them how to deal with
doctors, how to talk to friends and relatives, and how
to make the end of life as meaningful and precious as
the beginning. Here is a book like no other on the sub-
ject: hopeful, clearsighted, and life-changing.
Riverhead Books/Berkley Publishing Group
375 Hudson Street
New York, NY 10014
ISBN: 1573220515
f8=0; G85CB:,=34ABC0=38=6 C74 *?4280; AF0A4=4BB,
%443B, 0=3 C><<D=820C8>=B >5 C74 dH8=6
By Maggie Callanan and Patricia Kelley
This remarkable book by two hospice nurses shows
how communication at end of life takes on special
meaning. Touching case stories show how approaching
death can give a clarity and importance to how we all
relate to one another. The book affirms that you can
live fully to the very end, and that the final gifts
received by caregivers can outweigh the burdens they
must carry. Practical suggestions on how to respond to
the requests of the dying will be of value to anyone in
a caregiving role.
Avon Books
ISBN: 0553378767
+74 GD834 C> E=3-&5-#854 C0A4 5>A *4=8>AB
Edited by Rory Fisher, Margaret M. Ross, and Michael
J. MacLean
This Guide is a collaborative effort between the
Universities of Toronto and Ottawa. The purpose of
the Guide is to support the end-of-life care of seniors
hat reflects a consensus of best practices in this area of
healthcare and social service delivery. The Guide also
emphasizes and encourages the collaborative nature of
end-of-life care, supports personal health practices and
decision-making, and strives to fulfill the adage that
effective healthcare is able to "heal sometimes, relieve
often and to comfort always."
University of Toronto, Interdepartmental Division of
Geriatrics, Faculty of Medicine
University of Ottawa, School of Nursing, Faculty of
Health Sciences
(416) 480-6068
http://www.rgp.toronto.on.ca/
+74 GD834 C> )420;;8=6 0=3 +4;;8=6 />DA #854
*C>AH
This Guide is a beautiful workbook designed to help a
person tell his or her life story. Page by page, it sug-
gests topics--such as Family, Adult Life, Growing
Older, and Reflections--and questions to consider. The
questions can be helpful to the person sharing the
memories, as well as provide other family members
with a way to elicit stories and experiences. The Guide
also includes a section in which to record values the
person wishes to pass on to future generations.
Published by Hospice Foundation of America
(800) 854-3402
Printable version available at
www.hospicefoundation.org
H0=31>>: 5>A $>AC0;B : GD830=24 f>A '4>?;4
f028=6 *4A8>DB ;;=4BB
By Joanne Lynn, MD and Joan Harrold, MD
Foreword by Rosalynn Carter
A comprehensive and authoritative guide to end of life
care, written for a general audience by a team of spe-
cialists that includes some of the world's leading
authorities in the field. This readable and sensible book
should be read by every family caring for a loved one
who is seriously ill, and by every medical professional
in a palliative care setting. The balance between content
and presentation is extremely well done, making the
book accessible to a general audience while still having
enough detail to be of value to medical professionals.
Joanne Lynn, M.D. is President of Americans for
Better Care of the Dying. Joan Harrold, M.D., is the
Vice President, Medical Director of the Hospice of
Lancaster County, Lancaster, Pennsylvania.
ISBN: 0195116623
=5;D4=28=6 C70=64: A '0C84=CB 0=3 C0A468E4A
A3E>202H GD834
By the Canadian Hospice and Palliative Care
Association (CHPCA)
This book is part of the Living Lessons project of
the CHPCA and hospice and palliative care organiza-
tions across Canada. The book provides readers with
the tools and information to help them become health-
care champions for themselves or a loved one.
1-877-203-4636
www.livinglessons.org
#0BC +>D27: 'A4?0A8=6 5>A 0 '0A4=C'B d40C7
By Marilyn R. Becker
New Harbinger Publications, Inc.
ISBN: 1879237342
ISBN: 0583274864
A GD834 C> ,=34ABC0=38=6 GD8;C dDA8=6
B4A40E4<4=C
By Robert Baugher
Caring People
ISBN: 0963597515
C0A468E8=6 0=3 #>BB: f0<8;H %443B, 'A>54BB8>=0;
)4B?>=B4B
Edited by Kenneth Doka and Joyce Davidson
With approximately 25 million family caregivers in this
country, one out of four households are providing care
for a loved one. It is important for healthcare profes-
sionals to understand the unique needs of family care-
givers and offer compassionate support. Featuring writ-
ings from 13 nationally recognized experts in the field
of caregiving and loss, this book is developed in con-
junction with HFA's award-winning Living With Grief
series.
Hospice Foundation of America
(800) 854-3402
ISBN: 1893349020
+74 C>DA064 +> GA84E4
By Judy Tatelbaum
Harper and Row, New York
ISBN: 0060977859
d>='C +0:4 $H GA845 AF0H fA>< $4
By Doug Manning
A warm conversational style takes the reader through
all the emotions and experiences that accompany the
death of a loved one. The first section of the book
deals with those first few days after a death and all the
plans and decisions that need to be made. The second
section picks up the grief journey and provides guid-
ance, assurances and hopes for healing.
Harper San Francisco
(Also available in audiocassette format)
ISBN: 0060654171
+74 EH4B AA4 *D=;867C: A !>DA=4H +7A>D67 GA845
By Shirley Koers
Walker and Company
ISBN: 0802725864
GA845 EG?A4BB43 .74= A $0C4 d84B
By Marta Felber
Personal expressions, experiences and suggestions with
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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The step-by-step guide to preserving your dignity, your
choice, and your inner peace at the end of life
By Daniel R. Tobin, M.D.
with Karen Lindsey
This practical guide to planning end of life care is
based on the FairCare program for peaceful dying
which Dr. Tobin developed at the V. A. Hospital in
Albany, New York. He is now expanding the program
to a network of other hospitals. The book takes a sys-
tematic approach to decision-making intended to
increase autonomy and peace in end of life care. It is
written in plain language for use by persons faced with
terminal illness and their caregivers. It uses a 26-step
program to help identify key decision points in choos-
ing care. Major issues include development of advance
directives, pain relief, choices in care settings, and com-
passionate advice on how to reach closure with loved
ones. Overall it's a clear roadmap that is presented
without excessive medical detail.
Perseus Books
ISBN: 0738200344
.7>'B )867C (.7>B4 )867C?): *44:8=6 0=BF4AB
0=3 d86=8CH 8= C74 d410C4 &E4A C74 )867C C> d84
Edited by Robert C. Horn, III, PhD and Gretchen
Keeler
The debate over one's right of choice, when it comes
to end of life decisions, is certainly a hot one. No two
people have the exact same opinion, yet thousands
upon thousands of individuals and families face termi-
nal decisions every day. This book offers readers the
first truly objective look at all the issues from a unique
perspective. The editors (one of whom is a 14-year
survivor of ALS) provide interviews with 10 individu-
als who have faced terminal illness.
DC Press
Sanford, FL
(866) 602-1476
(Can also be ordered through www.alsa.org)
ISBN: 0970844425
B2?2.C2:2;A B<<8@ & GB612@
A GA845 &1B4AE43
By C.C. Lewis
A more religious account of rediscovered faith.
Bantam Books, New York
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space for one's own thoughts and feelings as well.
"Workbook" format for journaling.
LifeWords, West Fork, AK
ISBN: 0965396746
+74 GA845 )42>E4AH H0=31>>:
By John W. James and Russell Friedman
Harper and Row
ISBN: 0060915862
+74 GA84E8=6 +8<4
By Anne M. Brooks
A spouse's personal account of the first year after her
husband's death. Written in brief sections, and talks
about loneliness, depth of grief, etc.
Harmony Books, New York
ISBN: 0517572222
H40;8=6 />DA GA84E8=6 H40AC: 100 'A02C820; 340B
By Alan D. Wolfeld, Ph.D.
Companion Press, Fort Collins, CO
ISBN: 1879651122
H>F C f44;B .74= A '0A4=C d84B
By Jill Krementz
Alfred A. Knopf, New York
ISBN: 0394758544
H>F +> G> &= #8E8=6 .74= *><4>=4 />D #>E4
d84B
By Therese A. Rando, Ph.D.
Bantam Books
ISBN: 0553352695
+74 !>DA=4H +7A>D67 GA845
ISBN: 1879651114
#854 A5C4A #>BB: A '4AB>=0; GD834 d40;8=6 F8C7
d40C7, d8E>A24, !>1 C70=64 0=3 )4;>20C8>=
By Bob Deits
Fisher Books
ISBN: 1555611893
#8E8=6 .8C7 GA845 .74= ;;=4BB 8B 'A>;>=643
By Kenneth Doka
Hospice Foundation of America
Washington, DC
ISBN: 1560327030
#8E8=6 .74= 0 #>E43 &=4 H0B d843
By Earl A. Grollman
Very poignant poems and brief thoughts, easy to read.
Beacon Press, Boston
ISBN: 0807027154
&DA GA40C4BC G85C: A $438C0C8>= >= dH8=6 0=3
C0A8=6
By Henry J.M. Nouwen
Reflecting on his own impending death, as well as on
the deaths of loved ones and friends, Nouwen shares
his view of death as a gift, an opportunity to impart
hope to hose around us, whether through our own
dying or in our caretaking of someone else.
Harper One
ISBN: 0060663553
,=34ABC0=38=6 GA845: H4;?8=6 />DAB4;5 H40;
Readers are asked specific questions about their grief
journeys and encouraged to think about and write
down their responses.
ISBN: 1559590386
.74= B03 +78=6B H0??4= C> G>>3 '4>?;4
By Harold S. Kushner
Inspired by the death of his 14-year-old son and his
family shared ordeal, Rabbi Kushner tells how to deal
spiritually with an unfair loss or tragedy.
Avon Books
ISBN: 038067033X
.74= '0A4=CB d84: A GD834 5>A A3D;CB
By Edward Myers
Penguin
ISBN: 0140092110
.74= *D554A8=6 '4AB8BCB
By Ira Byock, MD
Reflections on suffering and commitment to alleviate it
by an American hospice physician.
Journal of Palliative Care, 10:2, pp. 8-13
Also available at http://www.dyingwell.org/suff-
per.htm
.74= />DA *?>DB4 d84B
By Cathleen L. Curry
This book deals with a variety of practical concerns for
Calgary, AB
www.alsab.ca
ISBN: 0968538304
f0;2>='B CAH
By Major Michael Donelly, USAF, Retired
With Denise Donelly
A moving memoir of the author's experiences as an air
force pilot throughout the 1980s and the Persian Gulf
War, that also confronts his postwar diagnosis of ALS.
(888) 749-6342
(Can also be ordered through www.alsa.org)
ISBN: 0275964620
f>A .>A3B-A !>DA=0; >5 H>?4 0=3 H40;8=6
By Chris Vais, BA, MDiv, DD
A spiritual experience of living with a terminal illness,
ALS. Chris was a minister, but those of any faith or no
faith background will benefit from "For Words."
www.als.ca/chris-vais/
IBSN: 0973347406
H8B BA>C74A'B "44?4A: A *C>AH 5A>< C74 E364 >5
$43828=4
By Jonathan Weiner
Featuring ALS Therapy Development Foundation
(ALS-TDF) founder James Heywood and his brother
Stephen, this book tells the story of three epic lines of
research that are coming together through the eyes of
Jamie, a young entrepreneur, who gambles on a new
model of therapy development to save his brother
Stephen's life. The story also profiles the Heywood
family as they defiantly fight ALS.
HarperCollins Publishers
ISBN: 006001007X
H>F .8;; +74H "=>F 5 '< d403?
By Robert C. Horn, III
GR/St. Lucie Press
2000 Corporate Blvd., N.W.
Boca Raton, FL 33431
ISNB: 1574440713
= dA40<B-A #854 !>DA=4H 8= 'A>B4 0=3 '>4CAH
By Elizabeth Grandbois
Elizabeth Grandbois tells of her life story including
her inspirational battle with ALS through prose and
poetry.
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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those who have lost their mates to death, including
stages of grief for adults and children, mourning, lone-
liness, sexuality, networks of support, financial priori-
ties and planning, good health practices, and healing.
Ave Maria Press
ISBN: 0877934169
$2?@<;.9 A' 'A<?62@
A '0BB8>= 5>A #854
By Paul Brock
This new book is the story of Paul Brock who at the
age of 53, happily married with three children, at the
peak of an illustrious career, and a bundle of energy-
except for a weak right forearm-was diagnosed out of
the blue with motor neuron disease and given three o
five years to live. Now 60, Paul writes, "I can no
longer walk, play the piano, scratch my nose, cuddle
my wife, hug my kids" But he can still think, talk
and propel himself by motorized wheelchair, love, be
loved, laugh, cry, feel, work, dream, get cranky,
empathize, hope, feel the touch of hand, taste the
warmth of red wine, and many other things. Despite it
all, says Paul, "I retain my passion for life. And for
telling stories." This book is an incredible and remark-
able story-a celebration of courage and tenacity of the
human spirit.
ABC Books
Sydney, NSW, Australia
1-300-360-111
sueanna@opusnet.com.au
www.abcshop.com.au
ISBN: 0 7333 1447 3
C;>B8=6 C><<4=CB-A *?8A8CD0; !>DA=4H 8=C> C74
H40AC >5 0 f0C0; A55;82C8>=
By Brian A. Smith
This book focuses on the destination and sheds light
on the path so that the cared-for and the care-giver are
both illuminated on the way.
Clements Publishing
Toronto, ON
www.clementspublishing.com
ISBN: 1894667069
CA84B >5 C74 *8;4=C
By Ellen Bell
A touching and personal account of Evelyn Bell's life
with ALS.
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Manor House Publishing, Inc.
(905) 648-2193
ISBN: 0973195606
)4<4<14A C74 /40A 6>C EE4AHC78=6 .0=C43
PA=3 A#*
By Darcy Wakefield
Marlowe and Company
245 West 17th St.
New York, NY 10011
ISBN: 1569242798
!>DA=4HB F8C7 A#*
By David Feigenbaum
In this book you will find 33 journeys about people liv-
ing with ALS. Some are hopeful, some sad. A few are
angry. All are powerful, real-life examples of people
doing their best to cope, often with humor and high
spirits.
DLRC Press
P.O. Box 1061
Virginia Beach, VA 23451
(800) 776-0560
lynn@davidlawrence.com
#40A=8=6 C> f0;;: +74 B;4BB8=6B >5 0= <?4A542C
#854
By Philip E. Simmons, Ph.D.
Read an excerpt at www.learningtofall.com,
Xlibris: www.xlibris.com , or by phone 888-795-4274
(during business hours, Eastern time).
In Learning to Fall, Lake Forest English Professor
Philip Simmons tells the story of his spiritual journey,
which began when he was diagnosed with the fatal Lou
Gehrig's disease at age 35. With wisdom and humor,
he finds answers to life's deepest questions and shows
us how, against all odds, to live lives of depth, compas-
sion and courage.
ISBN: 073884022
#4CC8=6 G>: $>AA84'B )45;42C8>=B >= #8E8=6 .78;4
dH8=6
By Morrie Schwartz
Doubleday & Company, Incorporated
ISBN: 0385318790
$0:8=6 *4=B4 &DC >5 C74 *4=B4;4BB-+74 $2f40C
f0<8;H A#* !>DA=4H
By Ruth L. McFeat
This book is the story of the McFeat family's 20
month journey with ALS. Ruth's husband Forrest had
ALS and was cared for at home until his death. The
purpose of the book was to express individual physical
and emotional family members' journeys in an attempt
to help others understand what it is like loving and car-
ing for a person with ALS at home as well as provide
practical information to those who are also facing a
journey with ALS.
Proceeds from the sale of the book go to the Robarts
Institute for ALS Research in memory of Forrest
McFeat. Books can be ordered for $10 plus $5 for
postage and handling by writing the author at P.O. Box
124, Dutton, ON, N0L 1J0.
ISBN: 0968539408
$H #D:4 0=3
By Eleanor Gehrig and Joseph Durso
This is a moving story of an era and a love that can
never be forgotten-by the widow of one of baseball's
greatest heros.
Thomas Y. Crowell Company
ISBN: 0690011091
&= A=H G8E4= d0H
By Joe Martin and Ross Yockey
ISBN: 0895872331
&= E06;4'B .8=6B-fD;58;;8=6 C74 %443B >5 />DA
+4A<8=0;;H ;; #>E43 &=4B
By Connie Bobo
This is an informative book giving helpful hints on
ways of taking care of a loved one with ALS at home.
Ms. Bobo's husband died of ALS in the prime of his
life.
The ALS Association of Nevada
(702) 248-4507
ISBN: 0966541804
+D4B30HB .8C7 $>AA84
By Mitchell Albom
Story about Morrie Schwartz, professor at Brandeis
University who died of ALS in 1995. Mitch was his
student and visited him many times before his death
and together they wrote this tender book.
Bantam Doubleday Dell Publishing Group, Inc.
1540 Broadway
New York, NY 10036
ISBN: 0385484518
die of ALS at 40.
Contact Martha Brunellat mbrunell@access.net to
order or visit www.wildwithwords.com/bradie.htm
GA0=3?0, .70C 8B A#*?
400, 320-23 Avenue S.W.
Calgary, AB T2S 0J2
(403) 228-7752
+74 GA84E8=6 C78;3: A '0A4=CTB GD834
By Helen Fitzgerald
Simon and Schuster
New York, NY
ISBN: 0671767623
H40;8=6 C74 GA84E8=6 C78;3'B H40AC: 100 'A02C820;
340B 5>A f0<8;84B, fA84=3B, 0=3 C0A468E4AB
By Alan Wolfelt, PhD
This book is for those in need of practical, day-to-day
"how-tos" for helping grieving children they love. All
ideas presented remind that grieving children need our
unconditional love, support, and presence.
www.centerforloss.com
H40;8=6 />DA GA84E8=6 H40AC: 100 'A02C820; 340B
5>A "83B
By Alan Wolfelt, PhD
This book is for young and middle readers (six-12
years of age) grieving the death of someone loved.
The text is simple and straightforward. There are
many age-appropriate activities as well as gentle, heal-
ing guidance throughout.
www.centerforloss.com
H4;?8=6 C78;3A4= C>?4 F8C7 A#*QA '0A4=C0;
=5>A<0C8>= GD834
Produced by the ALS Society of Canada. To request a
copy, contact your Provincial ALS Society, or down-
load for free at www.als411.ca.
H>F C> H4;? C78;3A4= +7A>D67 0 '0A4=C'B *4A8>DB
;;=4BB
By Kathleen McCue
St. Martin's Press, New York
ISBN: 0312113501
= $H dA40<B... d>!
By Linda Saran
Inspired by the author's mother who continued to nur-
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.74= C74 $DB82 *C>??43 "4?C >= d0=28=6
By Angela Riggs
Written by a young woman about how she dealt with
her ALS, managed her life and the art of living for the
sake of life itself.
BookPartners, Inc.
P.O. Box 922
Wilsonville, OR 97070
(800) 895-7323
F60A6<;
'4AB>=0; =9DA84B
By Scott Turow
This novel is about a successful personal injury attor-
ney who is discovered by a federal prosecutor to be
involved in bribing judges. The twist to this book is
that the protagonist's wife is a person with ALS.
Farrar Straus & Giroux
ISBN: 0374281947
B<<8@ 3<? .;1 ./<BA C5691?2;
A#* A2C8E8CH B>>:
Produced by The ALS Association, St. Louis Regional
Chapter
2258 Weldon Pkwy.
St. Louis, MO 63146
(888) 873-8539
www.alsa-stl.org
$10 USD
B4A40E43 C78;3A4= 0=3 +44=B-A *D??>AC GD834 5>A
'0A4=CB 0=3 'A>54BB8>=0;B
By Earl. A. Grollman
Bereaved Children and Teens is a complete
resource for parents and professionals seeking to help
children cope with the death of someone they know.
Beacon Press
25 Beacon St.
Boston, MA 02108-2892
ISBN: 0807023078
(800) 733-3000
d40A BA0384: A *C>AH >5 #854 F8C7 A#*
By Martha Brunell
An audiobook of 45 letters written for three year old
Bradie, by her father Jim about what its like to live and
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95
ture an intimate relationship with her grandchildren
despite her battle with ALS. Share the bonding experi-
ence of reading about two sisters who escape the
world of their grandmother's physical limitations to the
freedom of her dream realm where anything is possi-
ble. Together, the girls explore a place where bodies are
limited only by mind. This narrative gives testimony to
the magical power of the imagination - a secret that
most children instinctively possess...and many adults. It
has universal appeal to all navigating the road of life
together.
ISBN: 0-9672082-0-3
Available through www.lesturnerals.org for $12.95 US
#854C8<4B
By Bryan Mellonie and Ropbert Ingpen
Excellent book about the life cycle for younger chil-
dren.
Bantam Books, New York
ISBN: 0553344021
#8E8=6 .8C7 GA845: C78;3A4=, A3>;4B24=CB, 0=3
#>BB, (2000)
Edited by Kenneth J. Doka, features articles by leading
educators and clinicians in the field of grief and
bereavement. The chapters entitled "Voices" are the
writings of children and adolescents. The book
includes a comprehensive resource list of national
organizations and a useful bibliography of age-appro-
priate literature for children and adolescents. Below is a
list of current chapters and authors.
#>D G47A86: +74 #D2:84BC $0=
By David A. Adler
ISBN: 0152005234
Mr. Adler is the award-winning author of more than
one hundred books for children. This beautifully illus-
trated book by Terry Widner depicts the life and leg-
end of Lou Gehrig. For children of all ages
Gulliver Books
Harcourt Brace & Company
525B St., San Diego, CA 92101
15 E. 26th St., New York, NY 10010
(800) 544-6678
(612) 926-2665
ISBN:0962050242
'0CA82: 0=3 C74 G80=C
By David G. McNelis
When Patrick, the village storyteller, hears his name
being called out by a thirty foot tall giant, he is terri-
fied. Using humor to hide his fear, Patrick confronts
the giant and discovers that this hideous creature has
cursed him with an evil sickness, and has only days to
live. With his body quickly weakening, from the giant's
illness, Patrick decides he must slay the monster in
order to survive. Aided by his family and Connor, the
red bearded blacksmith, the battles begin. It soon
becomes apparent that destroying a mighty giant is no
easy task. However, Patrick refuses to give up which all
makes for a tale full of exciting confrontations, unex-
pected twists, and plenty of laughs and tears along the
way.
David McNelis worked as a Physician Assistant for
over twenty years. In 1996, he was diagnosed with
ALS. Having to retire in 2002, he began writing
humorous stories about his childhood, as a legacy for
his children. Patrick and the Giant is his latest endeav-
or, which he managed to complete with his last work-
ing finger. He continues to write with the use of his
foot. He and his wife Linda live in New Jersey and
have four children and three grandsons.
Wasteland Press
www.wastelandpress.net
ISBN: 978-1600474910
*0H8=6 G>>31H4: B4A40E4<4=C A2C8E8CH B>>:
By Jim & Joan Boulden
Boulden Publishing
P.O. Box 9249
Santa Rosa, CA 95405
(800) 238-8433
ISBN: 1878076124
*CA0867C +0;: A1>DC d40C7 5>A +44=064AB
By Earl A. Grollman
If you are a teenager whose friend or relative has died,
this book was written for you. Earl A.
Grollman explains what to expect when you lose
someone you love.
ISBN: 0807025003
+0;:8=6 A1>DC d40C7: A d80;>6D4 B4CF44= '0A4=C
0=3 C78;3
By Earl A. Grollman
How do you explain the death of a loved one to a
.74= />DA '0A4=C 70B A#*QA B>>:;4C 5>A +44=B
copy, contact your Provincial ALS Society, or down-
load for free at www.als411.ca
ABC %4FB 'A4B4=CB $>AA84 *27F0ACI: #4BB>=B >=
#8E8=6
Tuesdays with Morrie proved to be a highly popular
memoir, in which college professor Morrie Schwartz
was caught in conversation with former student Mitch
Albom. Albom was inspired to write this book after
catching Morrie in conversation with Ted Koppel, on
his Nightline television show. Attempting to chronicle
his dying days on Keppels show, Morries recollections
are earnest, heartwarming, and a fascinating glimpse
into one mans final moments on the planet. They are
presented here, and are both funny and sad in equal
measure, with Morrie displaying all his trademark wit
despite his failing health due to ALS. See bookstores
and on-line resources such as www.cuniverse.com, for
a copy of this DVD.
+74 A#* ABB>280C8>='B #8E8=6 F8C7 A#* -834>
*4A84B:
C;8=820; C0A4 $0=064<4=C d8B2DBB8>= F8C7
A#* EG?4ACB
L $>18;8CH, A2C8E8C84B >5 d08;H #8E8=6, 0=3
H><4 A30?C0C8>=B
L A30?C8=6 C> BA40C78=6 C70=64B 0=3 %>=-
=E0B8E4 -4=C8;0C8>=
L A39DBC8=6 C> *F0;;>F8=6 d85582D;C84B 0=3
L $08=C08=8=6 G>>3 %DCA8C8>=
L C><<D=820C8>= *>;DC8>=B 0=3 *H<?C><
$0=064<4=C
(Available at no charge to persons living with ALS,
family members, and their personal healthcare profes-
sionals through ALSA at www.alsa.org)
A#* #>D G47A86'B d8B40B4
This video is a 30-minute program from "The Doctor
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
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child? Earl Grollman's book provides sensitive and
helpful advice for families coping with loss. A
compassionate guide for adults and children to
read together, featuring a read-along story,
answers to questions children ask about death,
and a comprehensive list of resources and
organizations that can help.
ISBN: 0807023736
+0;:8=6 .8C7 />D=6 '4>?;4 A1>DC A#*:
f>A *27>>;B
copy, contact your Provincial ALS Society, or
download for free at www.als411.ca
+0;:8=6 .8C7 />DA '0C84=CTB C78;3A4= A1>DC A#*:
A 'A8<4A 5>A H40;C7 'A>54BB8>=0;B
copy, contact your Provincial ALS Society, or
download for free at www.als411.ca
+74 GA84E8=6 C78;3: A '0A4=C'B GD834
By Helen Fitzgerald
Simon and Schuster, New York
ISBN: 0671767623
.74= *><4>=4 H0B 0 -4AH *4A8>DB ;;=4BB:
C78;3A4= C0= #40A= C> C>?4 F8C7 #>BB 0=3
C70=64
by Marge Heegaard
Woodland Press
99 Woodland Circle
Minneapolis, MN 55424
.74= *><4>=4 *?4280; H0B A#*QA B>>:;4C 5>A
C78;3A4=
copy, contact your Provincial ALS Society or download
for free at www.als411.ca
.74= *><4>=4 -4AH *?4280; d84B: C78;3A4= C0=
#40A= C> C>?4 F8C7 GA845
by Marge Heegaard
Woodland Press
99 Woodland Circle
Minneapolis, MN 55424
(612) 926-2665
ISBN:0962050202
*IDE#'/D*D@
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is In" a Dartmouth-Hitchcock Medical Center
Production. It studies the cases of two people with
ALS and a family caregiver . Expert medical and sci-
entific commentary is provided by Lucie Bruijn, PhD,
Research Director and Vice President of The ALS
Association, and Jeffery Cohen, MD, a neurologist at
Dartmouth-Hitchcock Medical Center.
Also available on DVD.
(800) 257-5126
www.films.com
B40A8=6 .8C=4BB-)>14AC C>;4H-d>=>7D4
This 90-minute film is an indepth, poignant, and per-
sonal look at five years in the life of Robert Coley-
Donohue, a Vancouver Island resident who lost his
wife to ALS and then received the same diagnosis him-
self later. The film depicts everyday life for Robert
chronicling his progression, the support of his family
and friends, the complexity of care, and hope and heal-
ing as he prepares to die.
National Film Board of Canada
(800) 267-7710 (Canada)
(800) 542-2164 (US)
(514) 283-9450 (International)
e-mail: international@nfb.ca
www.nfb.ca
C0A468E8=6 0=3 #>BB: f0<8;H %443B, 'A>54BB8>=0;
)4B?>=B4B
2001 Teleconference
This conference explores the ways that professionals
can better understand and respond to the needs of
family caregivers. The conference will emphasize issues
such as the contexts of caregiving, as well as govern-
mental and work policies that influence the experience
of caregiving. Particular attention will be given to cre-
ating strategies that professionals can use to assist fam-
ilies in responding to the challenges and opportunities
of caregiving, inform families as they make critical
decisions about end-of-life care, and support families
as they cope with their grief.
H>B?824 f>D=30C8>= >5 A<4A820 -834>B:
(800) 554-3402
www.hospicefoundation.org
#8E8=6 .8C7 GA845: AC .>A:, AC *27>>;, AC .>AB78?
1999 Teleconference
Whether at work, at school, at worship or at home,
grief not only affects our moods and motivation but
our ability to function and our relationships as well.
This teleconference considers the ways that grief influ-
ences us in varied settings, offering humane and practi-
cal suggestions to workplaces, schools and places of
worship as to how they can assist those struggling with
illness and loss. The panel features: Kenneth J. Doka,
PhD, Michael Jemmott, MDiv, Michael Kirby, MSW,
and Marcia E. Lattanzi-Licht, RN, LPC.
#8E8=6 .8C7 GA845: C78;3A4= A3>;4B24=CB 0=3 #>BB
2000 +4;42>=54A4=24
While we often discuss how we grieve as adults, rarely
do we consider the losses that children and adolescents
must face. Whether they are grieving the death of a
parent or grandparent, or facing the losses involved in
re-locating or divorce, children and adolescents often
do not know how to cope. This teleconference consid-
ers the range of child and adolescent loss, as well as
ways in which developmental level may affect respons-
es to loss. It will present practical advice and interven-
tion techniques to use to empower children and adoles-
cents with effective coping skills.
#8E8=6 .8C7 GA845: .74= ;;=4BB B 'A>;>=643
1997 Teleconference
What are the specific issues of grief and bereavement
during and after chronic illnesses? Living With Grief:
When Illness Is Prolonged explores the particular
stresses posed by different diseases such as cancer,
AIDS, and Alzheimers. In addition, it focuses on the
common problems that grievers may experience
throughout and after the illness. The panel features:
Betty Davies, PhD, Kenneth J. Doka, PhD, William
Lamers, Jr., MD, and Therese A. Rando, PhD.
L8E8=6 .8C7 GA845: .7> .4 AA4, H>F .4 GA84E4
1998 +4;42>=54A4=24
An exploration of how factors such as culture, spiritu-
ality, gender and age influence the ways we experience
grief and express loss. Living With Grief: Who We
Are, How We Grieve features discussions of how cul-
ture and spirituality can either help or hinder the griev-
ing process, as well as how patterns of coping with
grief vary by gender, class, age or developmental levels.
The panel features: Ronald Barrett, PhD, Kenneth J.
Doka, PhD, Bernice C. Harper, MSW, Patricia Murphy,
RN, PhD, FAAN, and Bradley Stuart, MD.
from heartbreak" again and again and again at each
stage of his ongoing losses. This film is an intimate
portrait of Phil and his family and the odyssey they
shared over the final months of his life. Phil Simmons
is the author of the book, Learning to Fall, listed in
this Resource section.
For information on how to order, cost and shipping,
contact Beitel_Lazar@videotron.ca, or (514) 487-9726.
-4=C8;0C8>=: +74 d428B8>= $0:8=6 'A>24BB
A 20-minute video designed for ALS patients, their
family members and health professionals. It includes
interviews with three ventilator dependent ALS
patients, family members and the medical staff from
the Lois Insolia ALS Center at Northwestern
University Medical School. (Available through the Les
Turner ALS Foundation, www.lesturnerals.org).
A' '=206360
The ALS Society of Canada does not endorse and is
not responsible for the content of external sites. If you
find a good internet resource you think should be
added to the list, contact the ALS Society to make your
suggestion. The Society will review it and if deemed
appropriate, it will be added to the next updated edi-
tion of the Manual.
A#* *>284CH 'A>E8=280; '0AC=4A *8C4B 8= C0=030:
www.alsab.ca
o ALS Society of Alberta
www.alsbc.ca
o ALS Society of British Columbia
http://www.alsmb.ca
o ALS Society of Manitoba
www.envision.ca/webs/alsnl
o ALS Society of Newfoundland and Labrador
www.alsnb.ca
o ALS Society of New Brunswick
www.alsns.ca
o ALS Society of Nova Scotia
www.alsont.ca
o ALS Society of Ontario
www.sla-quebec.ca
o ALS Society of Quebec
I"(E&"E( &E'#)&CE'
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Two videos dedicated to the memory of Dr. Barry
Smith who died with ALS in June 2001. One video is
designed for caregivers, either in groups or individually.
The second video is designed for health care profes-
sionals.
Both come with a STUDY GUIDE to assist group
leaders in using the videos.
To order, visit www.als.ca.
%DCA8C8>=0; #854;8=4: +74 f4438=6 +D14 d428B8>=
8= A#*
www.simplifiedtraining.com
Contact your Provincial Society to request a loan from
their lending library.
'0;;80C8E4 C0A4: f028=6 C74 f40AB, $0:8=6 C74
!>DA=4H
This video can be used to heighten awareness about
palliative care and address some of the common ques-
tions and concerns about it. It is a useful visual aid to
help explain palliative care to patients and families, and
for the general public. English and French versions are
included on each tape.
www.chpca.net/publications/informational_video.htm
*> $D27 *> f0BC
What would you do if you were 29 and found you may
only have a few years to live? So Much So Fast is
about the remarkable events set in motion when
Stephen Heywood discovers he has ALS and his broth-
er Jamie becomes obsessed with finding a cure.
West City Films, Inc.
To order: http://westcityfilms.com
$26.95 USD
State of the Art Communication for PALS
Produced by www.synvision.dk
For more information: www.als-communication.dk
+74 $0= .7> #40A=43 C> f0;;
Produced by Beitlel/Lazar Productions Inc. (2004)
McGill University
This is a feature documentary by Garry Beitel about a
gifted writer and eloquent teacher who celebrates the
wonder of life even as he is slowly dying of ALS. As
his muscles deteriorate and his body becomes increas-
ingly paralyzed, Phil Simmons continues to "wrestle joy
&C74A A#* &A60=8I0C8>=B:
www.alsmndalliance.org
International Alliance of ALS/MND Associations -
This site includes a directory of ALS/MND organiza-
tions worldwide as well as research reports from the
latest International Symposium on ALS/MND
www.alsa.org
The ALS Association (US)
www.lesturnerals.org
The Les Turner ALS Foundation (Chicago-
based ALS organization)
www.march-of-faces.org
March of Faces - raising awareness project
www.als-mda.org
Muscular Dystrophy Association (MDA) (US)
ALS Division supports people with ALS and
funds ALS research
www.mnda.org
Motor Neurone Disease Association (UK)
&2@<B?02@ 3<? C5691?2;:
www.als411.ca
ALS Canada web site for children and teens
www.march-of-faces.org/KIDS/moe1.html
March of Faces space for kids
www.alsindependence.com
'A8<0AH #0C4A0; *2;4A>B8B - '#*:
www.geocites.com/freyerse
- maintained by an individual with PLS
B0B82 =5>A<0C8>= - *?>=B>A43 1H 0 )4B40A27
&A60=8I0C8>=:
www.nlm.nih.gov/medlineplus/
amyotrophiclater alsclerosis.html
National Institutes for Health (US)
www.ninds.nih.gov/health_and_medical/
disorders/amyotrophiclateralsclerosis_doc.htm
National Institute for Neurological Disorders
and Stroke (Part of NIH)
www.rarediseases.org
National Organization for Rare Diseases
(NORD) (US)
www.neurologychannel.com/als/
A' &2@2.?05:
www.wfnals.org
00
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The World Federation of Neurology ALS Site
http://www.columbiaals.org/
The Eleanor and Lou Gehrig MDA/ALS
Research Centre
www.outcomes.umassmed.org/als/
The ALS C.A.R.E. Program is a voluntary,
physician-directed program to improve clinical
outcomes for patients diagnosed with ALS
A#* C;8=820; +A80; d0C010B4
http://clinicaltrials.gov
US government site--Mainly US-based trials
A1>DC )8;DC4: - <0=D502CDA4A B8C4 -
http://www.sanofi-
aventis.ca/products/en/rilutek.pdf
I;16C61B.9'@ D2/ @6A2@:
www.alsindependence.com
Maintained by George Goodwin, Person with
ALS (Canada)
A@@6@A6C2 (205;<9<4F
http://www.tetrasociety.org/
TETRA Society
A voluntary organization of Canadian and US
engineers and technicians who help to solve
your assistive devices challenges
www.abledata.com
ABLEDATA
Information on assistive technology and
rehabilitation equipment sponsored by the US
National Institute on Disability and
Rehabilitation Research
C.?246C2? '6A2@
http://www.ltcplanningnetwork.com/
How To Care
www.chpca.net
Canadian Hospice and Palliative Care
Association (CHPCA)
www.ccc-ccan.ca
Canadian Caregiver Coalition
www.fcns-caregiving.org
Family Caregivers Network Society
www.caregiver.on.ca
Caregiver Network
A'. (5?22 92AA2?@ A5.A 05.;42 =2<=92J@ 96C2@. F#&E*E&.
G<C2?;:2;A &2@<B?02@
www.canadabenefits.gc.ca
Canada Benefits-Connecting You to
Government Benefits
This site offers Canadian citizens government-
wide information about financial benefit pro
grams for individuals. Of particular interest
may be the pages for seniors, people with dis
abilities and veterans.
www.canadian-health-network.ca
The Canadian Health Network (CHN) is a new
and growing network, bringing together
resources of leading Canadian health organiza
tions and international health information
providers. The resources identified here will
help you take care or yourself and the people
you care about -- with tips on how to improve
your health and well-being.
www.cra-arc.gc.ca/disability
Disability Tax Credit (DTC) The disability
amount on your income tax return reduces
the amount of income tax that a person with a
disability, or their supporting person, might
other wise have to pay. Visit the Government
of Canada Web site for more information
about this and about medical expenses you can
claim.
www.hc-sc.gc.ca/seniors-aines
Health Canadas Division of Aging and Seniors
web site, with information on federal programs,
statistics on aging in Canada and more.
www.pwd-online.ca
Persons with Disabilities On-Line
Persons with Disabilities Onlines mission is to
provide integrated access to information,
programs and services for persons with
disabilities, their families, their caregivers,
service providers and all Canadians, through
the use of internet technology.
For information that is specific to the Province or
Territory in which you live, visit your provincial
government's web site.
Fact Sheets from the ALS Society of Canada, can be
printed from the web site www.als.ca and stored in the
FAC( 'HEE('
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A Canadian resource dedicated to making caregivers'
lives easier.
www.caregiving.com
Online support service for caregivers of an
aging relative, friend, or neighbour.
www.ec-online.net
ElderCare Online is a beacon for people caring
for aging loved ones. Whether you are caring
for a spouse, parent, relative or neighbor, this
site provides an online community where sup
portive peers and professionals help you
improve quality of life for yourself and your
elder. Includes chats for caregivers.
www.care-givers.com
Empowering Caregivers offers comprehensive
emotional and spiritual support for all care
givers through experts, articles, newsletter, jour
nal exercises, spotlights, healing circle,
resources, inspiration, humor and much more.
It is about choices, healing and opening to love.
www.von.ca
Victorian Order of Nurses
A national health care organization and a feder
ally registered charity that has been caring for
the lives and well being of Canadians in their
homes and local communities since 1897.
www.thefamilycaregiver.com
The Family Caregiver Newsmagazine, a
Canadian publication which includes a resource
directory, can be downloaded for free. You can also
submit your personal caregiving story for consideration
in an upcoming issue.
G2;2?.9 H2.9A5 &2@<B?02@
http://secure.cihi.ca/cihiweb/splash.html
Canadian Institute for Health Information
http://www.canadian-health-network.ca/
The Canadian Health Network - Health Info
for everybody
http://www.health.discovery.com/
Discovery Channel Health Site
http://www.medbroadcast.com/
Med Broadcast-provides information on a vari
ety of health topics including ALS (Click on
"A" and scroll down until you see Amyotrophic
Lateral Sclerosis)
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pocket page for your reference.
New Fact Sheets are published periodically, so check
the web site for additional topics to those listed
below at www.als.ca/publications-and-resources/als-
fact-sheets.
#4 Caregiver Stress: 10 Signs of Caregiver Stress
#5 Reducing Stress: Reducing Caregiver Stress,
Finding Better Ways to Feel Better
#8 ALS First Steps-First Steps for Families
#9 Ways to Help: Assisting Families Living with
ALS
#10 ALS/MND-The Dangers of Unproven
Therapies"
#11 Clinical Trials-A Primer
#12 Natural Health Products - Making Sense of
Complementary and Alternative Medicines
The Research Updates referred to in the Manual can
be downloaded from
http://www.als.ca/en/research/our-research-program
and stored in the pocket page for your reference.
Please check web site link for additional topics,
including those below.
#1- Oxidative Stress Not the Whole Story
#2- Rapid Diagnosis for ALS on the Horizon
#3- ALS4 Gene Found
#4- ALS Research Accelerates
#5- Another Step for Stem Cells
#6- Canadian Wins Milton Shy Award for ALS Essay
#7- Misadventure in the Motor Neuron
#8- Cognitive Deficits Provide Clues in ALS
#9- Devoted Researcher Brings New ALS Lab to
Canada
#10- Help or Hindrance
&E'EA&CH )$DA(E'

ALS Canada: 2012 Manual For People Living With ALS

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ALS Canada: 2012 Manual For People Living With ALS

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