The PSP Chronicles

Dedication

To my wonderful wife, Trish, for her endless love and support.

To my hero, Mike, for his inspiration.

And to Marci; thank you for the push.

Foreword

I feel extremely proud and immensely humbled to have been asked to write the foreword to Tim’s book, The PSP Chronicles. In my mind, there is no greater tribute one could be asked to fulfil.

We all know the well-known saying, ‘To understand somebody, you must first walk a mile in their shoes’. Well, let’s just say that after reading Tim’s story, I can honestly declare that I ran out of shoe leather walking in his, and a mile doesn’t even come close to nearing journey’s end.

Written with passion, you easily become absorbed by the spirit of life whilst wearing Tim’s shoes. Through sheer grit and determination, he also describes the personal loss of some of those dear, to both him and his story.

Subsequently, Tim has captured the very essence of what it is like to suffer from such a dreadful disease such as Progressive Supranuclear Palsy. The intimacy involved in day-to-day events, and how one deals with these various issues, is extremely well documented.

From my standpoint, it is one thing being a carer for someone with this dreadful disease; but actually living with PSP and further having the courage to write about it so openly, is completely another.

Ultimately, we have both shared the same journey but from completely different perspectives. Whereas my journey was based on that of a guide, Tim’s passage is that of a guide’s guide.

By reading beyond this page, you must be prepared for a journey few have walked, and even fewer have uttered…

Steve Dagnell author of You, Me & PSP.

Contents

Dedication

Foreword

Prologue

The Beginning

2012

Where’s the Corn?

Dr. Yang, Geriatrician

Breaking the News

Dr. Pasternak, Neurologist

The End of Work

2013

Cabin Fever

Staying Busy

Dr. Fraser… The Diagnosis

Moving Forward

Stressed

Care Giver Concerns

Dr. Jenkins, MDS

Cold, Hard Steel

No Pleasing Everyone

LTD-CPP

Christmas

2014

Brain Game Roulette

Fast-Track Four Seasons

Partners in PSP

The F Word

2015

Winter Work

Out from Hibernation

Summing up Summer

Fall Finale

Nose Hose 2

Night Terrors

Emma and Elsa

Dinner at the Browns’

The Circus

Dreams of Buried Treasure

Can’t Fix Stupid

Mood Swinging

There’s a Pad for That

Making Peace

Kitchen Chaos

Crawling Legs

Matthew

Marci

Green Christmas

A Burden Lifted

Mining for Gold

London Lament

Hope Does Matter

A Beacon in the Dark

2016

January

I’m Still Tim

A Difficult Week

A Month of Losses

February

Wayne Worries

Botox Predictions

March - Wine and Whining

P Is for Progressing

Keep On, Keeping On

April

Intolerance

Concern for Cooper

Muscle Pings and Pangs

Rude Awakening

Miracles for Mike

Mike’s Event

Acknowledgements

Glossary of Terms and Acronyms

Terminology Common to the PSP Chronicles

Copyright

Prologue

I had considered writing my story in the past, but it’s only after reading my new friend Mike’s personal accounts of his disease, I decided to put pen to paper my book I call The PSP Chronicles. Two years ago, I received a diagnosis of early onset dementia and progressive supranuclear palsy – PSP. It’s a challenging story for me to tell, as it forces me to remember all the unpleasant memories, confront, and accept the actuality of my condition. Certain recollections might unsettle you, dear reader, and indeed take you outside of your comfort zone. This is an honest and sincere account of the struggles I deal with and the future I face. From time to time I weave a little of my own brand of humour into the narrative. It’s my way of coping, or denying, as some might suggest.

Mike Sweeney, who lives in Moreland, Georgia also, has a diagnosis of PSP. After reading his writings, I concluded I would do the same, beginning my timeline back to when my journey first began. I hope to complete it the best I can with the help of my wife, Trish, and to keep my memoirs up to date.

But already, I’m getting agitated – one of the many symptoms of PSP. My typing skills, which were rudimentary before, are worsening. My thoughts, when I can remember, come as slow as the words I type. It’s frustrating. This beginning timeline will take longer than I first thought. I should have begun the journal earlier when Marci, my personal support worker – PSW – first suggested. Thanks for the push; it felt more like a shove.

Reading and focusing are becoming much more difficult for me now. I have become critical to the point of berating myself over spelling errors, grammar, missing words, punctuation and rambling sentences. The medical terminology for this is agrammatism. I thought, What the hell? This story and subsequent books aren’t meant to be perfect written works. This is a true story of my personal journey with a rare, terminal brain disease called PSP and dementia, which continues to evolve before my readers’ eyes. The road I travel includes my relationship with God, my family, friends, and all the baggage I can carry. Come. I invite you to travel on this journey with me and share in my experiences, wherever they may lead.

The Beginning

Tuesday, Nov 3/15

Medical reports. Nothing keeps the disease and my eventual demise more real than these, all the documented history and diagnosis, tests, prescribed medications, etc. It actually grinds you to a halt, all very sobering. Not that I’m in total denial, I have not completely accepted this whole PSP thing yet. My loving wife, Trish, tries her best to shield me from the medical reports and the like, trying to protect me, and sparing me from all the negative details.

Yesterday, I read a report from my Speech and Swallowing Test from October 2015, outlining some of the difficulties I’d been experiencing and concerns that we had. Swallowing issues or dysphasia is one of the symptoms of PSP and is a real concern. Weakened throat muscles could cause me to choke and even aspirate, leading to aspirated pneumonia, two of the major causes of death in patients with PSP.

That was a difficult test to take. The thought of having the scope snake through my nose and down my throat was enough to make me gag, and worse yet, the actual procedure did. It still does, even as I think about it now. The technician ended up using a nasal mist to freeze the area to complete the exam. Before the examination began, I first had to eat and swallow several test foods prepared in different consistencies to see what I could tolerate. She had placed a stethoscope to the side of my neck and listened to my throat muscles as I ate each of the test samples, each time making notes on her chart. No choking on my part this time – good – but she noted some muscle weakness.

Now the worst part of the exam was about to be begin. The technician did a series of checks making sure the instrument was properly calibrated, the light was working, and the monitor was in the correct position, so Trish and I could see the procedure. The nasal violation began. Up my right nostril – every inch felt like a foot – and slowly down the back of my mouth. It was then I learned I had a strong gag reflex.

I don’t recommend gagging with a scope up your nose and down your throat to anyone. On the plus side, I managed to keep down all the consistency samples I ingested a little while earlier. Time for plan B. should have actually been A for anesthetic. The technician sprayed some awful tasting mist up my nose that ended up in the back of my mouth and the top of my throat. It did do the job of freezing the target area.

Trish and I watched on the display monitor as the scope entered up and through my nasal cavity, then down into the back of my throat. It was interesting to view and reminded me of something I’d seen on the Discovery Channel. Now that the area was anesthetized, it didn’t bother me. The tech paused at a couple of areas, paying more attention to the flange at the top of the esophagus and noted there was still food residue there. She probed farther to the top of my throat, stopping at my vocal chords. We could all see there was a definite bowing on one of my chords. The tech went a little farther, then stopped again, made more notes. At this point, she removed the scope, which was a hell of a lot easier coming out than going in. The testing took all of forty-five minutes, but it seemed much longer.

Today is typical, like any other since my diagnosis. I followed my to-do list, or as the OT calls it, structured routine. I had an appointment later on with the foot care specialist for treatment of nail fungus. I go about every six weeks. Trish takes me there and is very diligent in keeping up with the appointments, and to tell you the truth, I don’t mind going. It gets me out of the house and I receive a little pampering as well. I made us dinner and afterwards read some emails. I even got the opportunity to respond back to Mike’s earlier email.

Even though Mike and I live thousands of miles apart, him in Georgia and me in Ayr, Ontario we have some things in common. We both have a diagnosis of PSP and are not far apart in age - Mike is 54 and a carpenter, I am 59 and a wood carving hobbyist. There will be more on Mike as I go back, and more going forward.

My evening is filled with distractions… more like annoyances, which fuel an already agitated and anxious mood. Uninterrupted quiet time with Trish and a crappy mood makes for bad brain chemistry, producing poor test results. I seem to be settling down now, but it’s more likely my nighttime medication taking effect. Mostly everyone has gone to bed by now, making it easier for me to compose my thoughts, especially after a day of ups and downs. I still managed to get some much-needed prayer time in. I’m not too worried about losing a little sleep; I always have a nap in the afternoon and feel quite rested afterwards. But I think I’ll end it here for tonight. The first step is always huge and very exhausting.

Wednesday, Nov 04/15

Today is no different from others, so far. I got up around 6:45 am. Trish was already up a full hour before me. I got dressed slowly; it can be quite tedious at times, even with the help of my sock and button aids. I made the bed and grabbed my ever-present and trusty 3rd generation cane. Because of a couple of falls, I have learned to carefully one-step-it down the stairs. I cannot see up or down that well anymore. Next, it’s over to the fridge, to check the prominently displayed to-do list complete with the day, the date, and all my tasks. Let’s not forget the dry erase markers! Where would I be without the markers? Hell, where would I be without my list?

Oh! Before I go any further, I must to listen to my morning worship song, 10,000 Reasons by Matt Redman, and read my daily devotional. The list begins with feeding the dogs, the cats, and all the tasks in between. All items are checked off as they’re completed, ending with my nighttime meds.

Exercise is an important part of the list and my day. My morning routine generally lasts for two plus hours. I begin with some floor exercises and stretching. Next, I move on to the recumbent bike for half an hour and the balance on the home gym for weight and resistance exercises. I take my exercising seriously. I’m extremely diligent about it. I know it makes all the difference in my mobility.

Somewhere between dinner and letting our dogs, Cooper and River, out for the last time, I try to find quiet time with Trish. Our home is distraction central and finding some meaningful time is extremely difficult and almost impossible most days.

This morning, I came up with the great idea to enter any special thoughts or situations as they came up on my laptop, as there was a better chance of me not forgetting them. Even this became distracting because I found I was spending more time at the keyboard than actually doing my housework, which put me behind.

I get anxious when I deviate from the list, which inevitably ends up with me becoming agitated. Then it occurred to me my smart phone had a voice recorder – why not use it instead? Problem solved. Problem solving, complex or not, is a difficult issue for me now. Problem solving is a function performed in the frontal temporal region of the brain and mine is affected by the dementia I have – frontotemporal dementia or FTD.

The housework is completed and checked off the list, and my exercises are done. 10:30 am. Marci – one of my two PSWs who assist me – has arrived. Luba is the other. They are both professional and compassionate women, very good at what they do. Marci waited outside the bathroom as I showered, ready to come to my aid in case of a fall. I managed once again without a mishap, but the day is still young.

It was time to get my youngest son Matt’s lunch prepared. After a year, he will now allow the PSWs to make and bring him his lunch. He occasionally responds to them when they verbally engage him. That in and of itself is huge for a boy with autism. It puts me more at ease knowing he is getting more comfortable around them. As my PSP progresses, my mobility and ability to perform simple tasks will decrease. I will have to rely more on the PSWs for help, but for now, I remain stubbornly independent. Just ask them.

So now that Matt’s lunch is done, and the dogs have been out, it was time to get my own ready. Today I had soup, a couple of cheese squares, a banana, and some applesauce, which makes it easier for me to swallow my meds. That’s ten so far for the day, only nine more to go. Just a spoonful of applesauce helps the medicine go down, medicine go down, medicine go down… It’s okay to sing along. Trish and I exchanged texts during lunch. She was checking in to see how things were going. Okay today. I managed to get through lunch without choking or falling in the kitchen. Trish is glad to hear it, but Marci is even happier with no issues.

Marci has done my foot treatment that requires attention. My feet are looking much better now. She has been here now for the scheduled two hours, so her time is done. My meds are taking effect and I am now getting tired. Nap time… yeah! If you tried to get me to nap two years ago, I’d say good luck with that. Now I eagerly look forward to it, and yes, the meds have something to do with it, too. One more quick text off to Trish, then in go the iPod earphones. Music is good for dementia, I’m told. It will be lights out for the next one to two hours.

I got up from my nap a little earlier than planned, but that’s okay. There’s yard work to be done and you couldn’t ask for a better day 21 C° and sunny skies on the 4th of November. Awesome. I brought the dogs out with me. I think they’re enjoying the weather as much as I am. I surveyed the backyard and I’m pleased at how it’s coming along. I did quite a bit of work this past spring and summer. My outdoor sanctuary is still a work in process. It’s the place where I like to go for personal reflection and prayer, my happy place. As I said, there is still more work to be done, but it has been a true labour of love.

River, our golden retriever and Matthew’s service dog, has been making more work for me while I tried to rake up the leaves and fallen branches as he pillaged through the pile, stealing a branch here and there. Cooper is quite content to lie there. He doesn’t have the energy anymore, as well as other issues associated with an aging dog. This causes me a great deal of concern. He’s Matt’s retired service dog, our furry guardian angel. Cooper has been an important part of our family and dearly loved by all. His health concerns are one more thing on our plate to deal with.

I brought the dogs in and fed them, now it was time to get Matt’s dinner ready. He eats the same thing, same time, every day. Easy. Trish had come home on time. We had to leave because I had a massage appointment at 4 o’clock. I hadn’t been there for a couple of months and I’m looking forward to it knowing it would bring relief to this besieged body of mine. I took the opportunity while we were out to get a long overdue haircut at the mall. This also allowed me the opportunity to take Willy, my new walker, for a spin. Works fine.

It’s a little later than usual, but I managed to find some time for reflection, quiet worship, and to journal. Good thing, because the next couple of hours before bed would be crazy with distractions. Dogs looking for attention, wanting to get up on the couch, go out, come in, wanting to eat again. Cat spats, Matthew’s constant interruptions, and the annoying incessant telemarketing phone calls. All of this has a name – the circus act.

Now that Matt’s and the dogs’ nighttime needs are looked after, it’s time for tea and hopefully some uninterrupted conversation with Trish. Then it will be time for my night meds and then off to sleep. Tomorrow I’ll do it all over again, Lord willing. Just wondering what Brain Game Roulette has in store for me then. Brain Game Roulette? It’s an imaginary game I play using a roulette wheel analogy for the sporadic nature of PSP symptoms that affect me. There’ll be more on that later.

Hold up! I need to go back before I can go forward. Let’s rewind about three years to the early spring of 2012, to where my journey first began. I made an appointment to see Dr. Harvey, my family physician, at Trish’s request over some concerns she had about me. More specifically sleep snoring and memory issues not so apparent to me at the time.

The doctor had given me a standardized memory quiz. I actually did this test a year before. Not a perfect score then, but not bad enough to be too concerned. However, the results are not in my favour this time and Dr. Harvey is going to refer me to Dr. Yang, a geriatric specialist at Cambridge Memorial Hospital. I thought; What the hell? I’m not that old. Why do I need to see him? I was also referred to the Sleep Clinic and diagnosed with sleep apnea. The fix? A CPAP Machine. We’ve been together for close to two years now. Anyone who uses one knows how effective the machine is at achieving the proper sleep for you and your partner. That said it can be a bit of a nuisance and a real romantic mood killer. Sleep or sex, hmm?

2012

Where’s the Corn?

June 2012

It was early in June and I was riding home with Kenny, a friend from work. We live in the same town and carpool alternating weeks. As we’re driving, I’m staring at the fields and asked him, When did they take the corn off? Ken glanced at me, bewildered, and responded it had only been planted and should come up soon. That jolted me, like being struck by a bolt of lightning. Somewhere on the ride home and elsewhere in my mind I missed an entire growing season. I considered that maybe Trish was right in her concerns with my memory issues. My consultation with Doctor Yang in July could yield more information. I’ll ignore it for now.

Dr. Yang, Geriatrician

July 2012

It was now July 2012 and I kept my appointment with Dr. Yang. Trish had accompanied me on this visit. His office is located on the lower level of the ambulatory unit in the Geriatric Rehab Centre. Not a good first impression for me. I know that I’m in my mid-fifties, but I certainly didn’t consider myself old. My ignorance was soon going to come back and hit me like a boomerang.

We were first introduced to Dr. Yang. He appeared to be at least fifteen years younger than I was. I was escorted by an OT to a separate office for some cognitive testing. Trish was going to visit with a social worker. After the cognitive testing, which seemed to take forever, I visited with Dr. Yang again. He did a physical examination, had me walk, speak, stand, sit, read the eye chart, etc., and asked many questions of both of us. He wanted me to walk again, only this time down a long hallway for better observation. He