Category Archives: Living with PD

Run Backwards

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Courtesy of Justine Galloway

It can be frustrating for anyone when, after a period of time, whether through deteriorating health or simply aging, a change has got to come. Certain tasks or actions that were at one time routine, no longer seem possible. I’ve written about a few of these in previous posts. If you are fortunate enough to be tenacious, and think a little outside the box, there may be a solution at hand.

That is one reason I like this story from public radio WBUR in Boston. It’s about a young woman who confronts a physical challenge in a unique way. She also had a father with Parkinson’s and I like the interplay that is suggested in their relationship. Hope you too enjoy it. Follow the link to listen (or to read the transcript).

Why Justine Galloway Runs Backwards

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Pullover

One in a series of Little Life Lessons Living with PD (or Short Shakydads for short)  

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Whilst I may never be a fashion connoisseur, permit me if you will to share my sage advise on the wardrobe of a PwP.* Or to be more specific, one item of that wardrobe – the pullover.

Pullovers have been popular for many years. They look great, come in many colours, and are crafted from a wide variety of fabrics for a wide variety of purposes. There are  long sleeve pullover t-shirts, pullover hoodies, pullover sweaters, pullover turtlenecks, pullover fleece, pullover golf and light spring jackets and pullover wind breakers – to name but a few.  I personally have at least 20-25 such items. Is that too many? How many is enough?

Regrettably, I must say that as my PD advances,  I have just about 20-25 too many pullovers. It is always a struggle to get them on while fighting stiffness and dyskenisis. I often find myself “propeliering” around in circles trying to navigate my arms through the sleeves, my head through the centre. I’m fortunate if there is someone in the vicinity to give me a tug or two and set me straight!

 

 

 

  • PwP – Person with Parkinson’s (not Person with Pullover)

A ruff winter

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Foot Prints 2, x-EBee-x, deviantart

Today, it’s – 20 C with a windchill of -33 C. The forecast is for colder days ahead. The snow, the salt, the slushy mess covers the sidewalks and streets of this town. Venture into a park or other open area and the wind will chill you to the bone. It will. It’s not just a figure of speech.  At the best of times, I find my Parkinson’s limits what I am physically capable of doing. Plunge me into an Arctic Vortex and I’m paralyzed. Frozen. Stiff.

Enter Sam.

Sam is our “family” dog. I happen to be the only “family” member that’s around most times. She’s a 12+ year  old cockapoo. Gentle, affectionate. Sometimes needy but generally easy to take care of. Besides the basics – food, water, shelter, love and attention – what she does need is to go out. To walk. To sniff out the latest smells. To pee. To poo. To pee some more! Four or five times a day.

Now, if you are familiar with the latest research into Parkinson’s Disease, you’ll no  doubt be aware of the multitude of benefits being touted for exercise. So all that walking of Sam should stand me in good stead, no? No. At least no when it’s this cold. Consider that each time I walk her, I need to get dressed in several layers of clothing – each with it’s own challenge – there’s underwear (long and short), my PD pump vest, pants, t-shirts, sweatshirts or sweaters, jacket and down vest, gloves, scarf and hat. These in turn come with their own struggles – buttons, zippers, clasps, a front and back side, arm holes and/or leg holes. When Sam signals that it’s time to go out, the process of assembling my cold weather attire begins. For someone with a lack of fine motor skills, tremors and oft times dyskenesis, this can be challenging. She patiently watches this costume parade slowly evolve before her. In the 10+ minutes it takes for me to get ready, she only cries out 3 or 4  times and I greet her cries with an evermore fervent “hold on…..i’m coming..almost  ready..”. At last, we’re finally ready. Ready to go downstairs for the next phase of preparations. Boots on. Leash on. Supplies (poop bag) loaded and clean-up towels at the ready for our return. A return that will see all of the above repeated – only in reverse order! And that is only the first walk of the day.

Then there is the actual walk itself. Navigating through slush, salt, snow covered sidewalks and roads, weaving through streets or huddling alongside buildings to escape tunnelling wind, fighting off Sam’s penchant for digging through snow to recover a dirty tissue, or being tugged back once again as she detects where others have been before us and leaves her mark. Worst of all though is when it’s time for her to “do her business”. The poop. The walk comes to a complete stop – more often than not in a snowy/slushy mix – while she does her duty. Then , I remove my gloves, expose my flesh to the biting cold, fumble to retrieve a micro-thin poop bag and separate it so that I have an opening to insert my hand. Any tremor I have in my hands is amplified by the cold and I struggle to balance my gloves/mittens, the leash, the poop bag and ultimately the secured load. Recently, I met a man shovelling out his driveway who spotted me doing this “dance”  He put down his shovel and came to lend a hand and take Sam’s leash while I attended to the business at hand. Much easier with another set of hands!

“Thanks so much! ”

“Good girl!”

“Time to go home”

Sam is tugging on the leash. She’s done. This walk is over. Time to go home and try to warm up. At least until the next walk.

Treat Yo Self

One in a series of Little Life Lessons Living with PD (or Short Shakydads for short)  

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It’s easy to get down and discouraged. The slow yet steady advancing of Parkinson’s Disease can, and inevitably does, takes its toll. When we can, and when we are able, we should be do something good for ourselves – something to perk up our spirits, to reenergize.

This needn’t be extravagant. It doesn’t even have to cost you any money. You simply have to consider yourself and what treat you might feel you are warranted – then do it! For me, just a few days ago, this treat came in the form of new soap. Not something spectacularly special, nor an item that inspires me to regale you with eloquent descriptors of it’s composition. I can tell you though that it made me laugh (could this really be soap for PwP?)  and my hands are clean. I feel better already……

 

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My day with Anthony Bourdain

What a day, what a day!

Never did I imagine I would spend a day with any media celebreties let alone the cool, suave, and intelligent host of CNN’s Parts Unknown, the late Anthony Bourdain. But – I did it! I spent the day with Anthony Bourdain.

That day, I woke up feeling particularly tired from a restless sleep. I was stiff and sore all over. I was feeling groggy and in a bit of a fog. I took my slew of medications and hooked myself up to my duodopa pump. I began to feel even more nauseous and decided to sit down and rest on the couch.

“I’ll just watch something on the TV for a few minutes to help things settle” I thought to myself. Parts Unknown it was. Season 7. Episode 1. Then Season 6, Episode 3. Season 7, Episode 5. Season 7, Episode two. And so it went. For the rest of the day. Only interrupted by washroom breaks for me and the dog.

Before I knew it, it was 5 pm and I had to shift my focus to preparing some food myself. I may have felt guilty about spending a day watching television and would have countered any criticism with a rebuke that I was getting supper ideas from Mr. Bourdain. Yet, I had no guilt. No shame. No regrets. Sometimes, when you have Parkinson’s, you have to relent to your body’s wishes. Sometimes you need to take a day off. A day to just be. That was my day with Anthony.

 

One in a series of Little Life Lessons Living with PD (or Short Shakydads for short)  

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Take that Parkinson’s

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“Take that Parkinson’s” Thwap! Thwap!

So exclaims my Rock Steady Boxing coach as she throttles the bag I’m punching on.

“Jab Cross Jab Cross” “Upper Cut to the body…to the head” she implores us.

“We may have Parkinson’s ” she calls out, and we – in a chorus of 12-15 folks with PD – add quickly “but Parkinson’s doesn’t have us!”.  An hour or so later, we’ll form a circle to conclude the day’s workout with a group cheer or chant.

“I don’t know what you’ve been told….Parkinson’s is getting old…   We”ll fight and shout and punch it out..We’re getting stronger that’s no doubt!” “

I must admit it. At first, I was a bit apprehensive about these assertive affirmations and group protestations. It was a little too reminiscent of the Walmart chant employees are called upon to participate in each day. However, I quickly came to appreciate them in so far as they are positive and spirited gestures in the face of what is a horrible disease. When so much of our lives are tainted by PD, it’s easy to be negative – to feel beaten down or disparaged. These affirmations are one way we can be spirited and fight back!

 

Cancel it

One in a series of Little Life Lessons Living with PD (or Short Shakydads for short)  

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Regular readers of this blog, and those in the Parkinson’s community, will know the importance of social interaction. I chastise myself when I’m not out and about or engaged. Yet, when I counter this with a concerted effort to make plans and get out, I often find I’m too tired or drained to follow through. Living with Parkinson’s on a daily basis is frequently exhausting. If I don’t follow through, I’m burdened with guilt. Oh, if I could only be a little more cavalier like these folks from Portlandia!

 

 

The Year of Living Dangerously

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Danger, biszkopclik, deviantart

Welcome to a new year. Time for a fresh start, to etch out some life on the blank slate before us. A time of new beginnings, deeper relationships, promising hopes  and dreams. (Insert your favourite new year’s cliche here).

Still, this morning I find myself in somewhat of a reflective moment – reflecting on the year gone past. Given the relative void of posts from me last year, the opportunity to play a little catch-up is one I can’t ignore.

In my last post, I’m sorry, I  shared some of the challenges i was facing of late. One that was particularly significant was this:

It seems to me that living with Parkinson’s presents some real conundrums. As my health declines, I find it increasingly harder to get the energy to go out and be active yet I am brutally aware of how important it is to be active. As my fitness level deteriorates, I feel less and less physically strong  yet I know how key exercise is to slowing the progression of the disease.

I can’t say that this struggle is over. More than once, I’ve felt defeated by PD. Especially in this past year. I’ve felt myself dangerously perched on a precipice – worried about succumbing to one or another of my health challenges .

Yet, I have made some definite forays into more positive space.

In May, as our last of 3 children prepared to leave home for university, and in anticipation of an “empty nest”, we shed the burdens of our 1950’s bungalow (read high maintenance house) and moved into a newer condominium townhouse in a more pedestrian-friendly town about an hour away. We really miss the neighbours and the community but the increased walking and the perpetually parked car have been a boon for me!

In October, I started Rock Steady Boxing 3 times a week and find it to be a great workout, a cognitively challenging activity and a much-needed social support. I’m still trying to get my regular water-wings back into Aqua Therapy!

Throughout the fall, I’ve been able to reconnect with a few old friends from this area and to meet some new ones.

Finally, in December, all of our children arrived  for Christmas and, for the better part of a week, we managed to live together in the tighter quarters of our new home without killing one another. Now that’s living on the edge! That’s living dangerously!

 

 

Happy New Year all!

 

 

 

 

I’m sorry

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I’m sorry.

So sorry.

Please accept my A POLO GY.

Or rather, my apology, as better delivered by,  Miss Brenda Lee.

Click here for Brenda Lee’s personal message from RK to You!

Parkinson’s is certainly a brutal disease. Over the past 17+ years, it has ravaged many aspects of my life which I have detailed in previous posts. Of late though, one of the most troubling has been a growing sense of isolation.

Now, living through a Canadian winter that has been particularly long this year doesn’t help, but you can’t blame the weather.

It seems to me that living with Parkinson’s presents some real conundrums. As my health declines, I find it increasingly harder to get the energy to go out and be active yet I am brutally aware of how important it is to be active. As my fitness level deteriorates, I feel less and less physically strong  yet I know how key exercise is to slowing the progression of the disease.

Socially, I am aware of how important it is to be engaged – with family, friends, the Parkinson’s community, and the community at large. Yet I find that the less I am engaged, the harder it is to get re-engaged. When I had a bad fall 2 years ago, my confidence and sense of fragility took me out of my dancing – something  that meant so much to me – and I haven’t gone back since. Last year, I had some complications  with my duodopa pump that forced me to pull away from swimming and again, I haven’t been able to get back to it.

I have friends that I haven’t seen in years. There are friends I would see on a regular basis that I’ve just not talked to in months. There are friends who live farther away  whom I corresponded with regularly that I haven’t written to in months.

For that, I am sorry. So sorry. Please accept my apology. I’ll try to do a better job going forward but know that I’m aware of how important this is. I also hope you’ll appreciate how difficult it is for me. It’s no war but maybe you can reach down into the trench and pull me out with you from time to time!

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melancholy, baby

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I’m in a melancholy mood today. It’s not just the frigid temperatures of a deep January freeze that have me trapped indoors, feeling isolated and alone. It’s not the sifting and sorting through household collections and various other sundry items in an effort to purge that have induced such feelings. Nor has it been brought on by any sudden or profound assessment of my life living with Parkinson’s Disease.

It all has to do with a similarly cold January 13, 1978 – forty years ago today – in Hamilton, Ontario when a small community radio station had its inaugaral broadcast as CFMU-FM.

I was fortunate to have been one of the core collective of volunteers who helped prepare for the launch and to lay the foundation for this valuable community resource. The station has faced threats to its existence over the years but, thanks to the efforts of many others, continues to flourish to this day.

A few years ago, with the support of the station, I helped orchestrate a project to mark the 33 1/3 anniversary (dubbed “33 1/3 – Play it Back”). This was an attempt to capture and preserve some of the materials that formed the foundation of community radio in Hamilton. It also paid tribute to those individuals who were such a large part of the formation and development of CFMU. We produced a 3 disc set of archival material and a program book that captured many personal recollections of those early days. And, oh yeh, we partied! We were always pretty good at that!

So, today, as I ruminated on the 40th anniversary, I  took time  to review some of this material. I was reminded of how special these times were – with such a special group of people – that made an enduring contribution to university and community life in Hamilton. I am fortunate to have had such a life experience. My PD may very well limit my ability to make such a contribution again, but it won’t prevent the longing. Thank you CFMU and my radio friends and family!