Category Archives: Living with PD

I’m sorry


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!



melancholy, baby


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!


I’ll drink to that!

Poor Dave Trinder.

The 60 year old English man, it was recently reported, says that he’s insulted or taunted every day by strangers who think he’s drunk. He struggles to walk due to his PD and has met people in the street who wrongly believe it’s because he’s had one too many. Just two weeks ago he was walking along a path when a worried mum told her young children to “get away from him”.

It’s a sad truth that there are many in our communities that don’t know better and are quick to judge. Certainly, this ignorance extends far beyond a judgemental view of PwP (People with Parkinson’s) to many others who are perceived as “different” – for example those with facial disfigurements – the subject of the new movie Wonder.

I empathize with poor Dave but I must admit I just had to laugh when I read the headline of this article:

Screenshot 2017-11-23 20.00.59

I know. At it’s core, this is not funny. Perhaps a tad too dramatic but a sad commentary. And Dave gets it too me thinks. He’s sad, not angry. Yet, when I say I felt compelled to laugh, don’t get me wrong. I’m not condoning such actions. It’s just that personally, I’ve never been “ashamed” or concerned about what others might be thinking. How other people react or what they might be thinking about this “strange” apparition before them is their problem, not mine.

That being said, I am far from oblivious to the odd looks or reactions one gets as a PwP. I’ve noticed the strange glances when I’m in the grocery store or out shopping. I’ve seen the cautious attentiveness that my movement disorder elicits from security personnel at concerts or at the airport. I’ve spotted the stares and clued into the conversations of folks in cars alongside of me – “See that guy shaking Dad! Is that why his license plate says “shakydad'”?

Sometimes, it’s actually an advantage to have a little movement – a dose of dyskenisis or a shot of tremors – just enough to give you a certain swagger! A few years back I was at an outdoor music festival in a beautiful park in Hamilton. I had just bought a bottle of root beer from the food concessions and was walking back through the centre of the park to meet my friends. My dyskenisis was pretty bad on this particular ocassion so, as my arms flailed, and as my steps alternated between lunges and short shuffles, I battled to keep my beverage from spilling everywhere. But I forged ahead. Arms flailing in all directions. Through the throngs of people. Undeterred. Then, I realized what was happening. As I moved forward, and as people saw me coming, this sea of people literally parted to make way for me! Holy Moses! No doubt some of these folks thought I was a crack head or a drunk but it made my traverse across that park a lot easier. As Levon Helm once sang, a drunkard’s dream if I ever did see one!

So, take heart Dave Trinder. You are not alone. Steady yourself against the slings and arrows of outrageous fortune. Carry on and flail away my friend! Cheers!


What’s Goin’ On??

questions drive me crazy, x-posion, deviantart

It’s time we knew more about what is happening with Parkinson’s Disease today. I’ve read a few news stories recently that should have us all concerned.

The first story emanated from New Brunswick, Canada, where a 3 year old boy has been diagnosed with Parkinson’s Disease. That is not a misprint – a 3 year old with Parkinson’s!  Doctors, family and everyone else is justifiably puzzled by this development.

What in the world is going on? I was myself shocked when I was diagnosed at the relatively young age of 42. Since then, it seems that I read more and more of individuals being diagnosed at younger and younger ages. But 3 year’s old seems perverse.

The second story comes out of the University of Rochester where researchers, studying the growing prevalence of Parkinson’s, suggest that PD may be the next pandemic in our society.  “Pandemics are usually equated with infectious diseases like Zika, influenza, and HIV,” says Ray Dorsey, a neurologist at the University of Rochester Medical Center. “But neurological disorders are now the leading cause of disability in the world and the fastest growing is Parkinson’s disease.”

The researchers point out that “between 1990 and 2015, the prevalence of Parkinson’s more than doubled and it is estimated that 6.9 million people across the globe have the disease. By 2040, that number of people with Parkinson’s will grow to 14.2 million as the population ages—a rate of growth that will outpace that of Alzheimer’s.”

The article concludes by calling on the Parkinson’s community to  dramatically step up efforts to advocate for more attention to PD including the following measures:

  • Support a better understanding of the environmental, genetic, and behavioral causes and risk factors for Parkinson’s to help prevent its onset.
  • Increase access to care—an estimated 40 percent of people with the disease in both the US and Europe don’t see a neurologist and the number is far greater in developing nations.
  • Advocate for increases in research funding for the disease.
  • Lower cost of treatments—many patients in low-income countries don’t have access to drugs that are both lifesaving and improve quality of life.

While it’s hard to find fault with these recommendations in the ‘call to action’, I think it is difficult to expect people with PD to take the lead on this score. Many of us – particularly those who have had the disease for some time – are locked in a daily struggle with it. We also tackle the side-effects of existing treatments and face new challenges as the disease advances that tax our resources even more. Sure, we can lend our voices (as weakened by the disease as they may be), but we need to have a broader chorus of concern for what is going on with PD. The increase in the number of people with PD, as well as the broader swath of the population that is affected, are surely cause for concern.

Perky Parkies?

smile, bethel1113, deviantart

Well HELLO to all my fine readers on this glorious winter’s day!  And a special shout-out to all of my fellow “parkies” (or my wolfpack as I love to call them!). Great to have everyone here! I know you’ve probably had a rough night with only 2 or 3 hours of sleep like me but hey, isn’t it great that we have all this extra time in the day!! What’s that you say? You’re feeling a little apathetic today? A little depressed? Well that’s nothing that a cone, or a bowl, or a quart of frozen yogurt won’t take care of!! And if you’re worried about putting on a few extra pounds, don’t worry! You can just ease up on your meds and shake those pounds right off!! Speaking of shaking, check out my blog’s new product reviews for some exciting additions you’ll want to get your hands on as quickly as you can! There is even a handy umbrella designed with us parkies in mind – don’t let those cloudy skies get you down!

These are my words but they sure don’t read or sound much like any blog I’ve ever written. I have, however, read many blogs that make an extra effort to emphasize the positive*. Some seek out the jovial side of living with Parkinson’s, some encourage spiritual solace and comfort. Others try not to wade into any controversial areas such as public policy, alternative therapies and the pharmaceutical industry.

Since I began writing this blog some 4 years ago, I have attempted to present a more balanced view of living with PD. The good, the bad and the ugly of PD you might say. At times, I have concurred with the importance of being positive. I’ve tried to inject humour  into my writing (which some folks tell me they have enjoyed). But I’ve also shared my frustrations, my challenges, and my opinions about some of the “sacred” institutions and controversial treatments of PD.

That’s not to say that I’ve used this blog as a platform to rant and rave or act in a malicious way. That’s never been my intent. Yet, it has also never been my intent to “sugar-coat” living with PD. I’d like to think people who have recently been diagnosed with PD would get more out of this type of blog. Also, in terms of building awareness outside the PD community, this approach paints a more realistic picture of Parkinson’s.

This blog won’t earn product endorsements. It won’t get me invited to pharmaceutical conferences. Hell (or heck, if you prefer), you won’t find even links to my blog in places you’d expect to see that! You will find lots of links to “perky parkies” – they are always up!




*   I’ve touched upon this topic previously – see Get Happy

Let’s Get Dirty


It’s a shame I’m not into bondage. Believe me, I’ve tried on a wide variety of apparatus in the privacy of our bathroom in front of a full length mirror. I’ve contorted my body into any number of positions, tried to follow convoluted instructions that have me attempting to insert Tab A into Tab B while depressing Clasp C. When I finally do break through and successfully secure each tab, clasp, strap and zipper, I face an even greater challenge. Getting the gear off.

I have been using the duodopa pump to deliver my Parkinson’s medication for over 7 years now. Long-time readers of this blog will be familiar with my lamentations on the awkward and heavy pump that I must transport with me for 16 hours a day. Almost every day I get so frustrated by this albatross that I just want to scream “I’m fed up with this f—ing pump”,  rip it off and be done with it! *

Initially, there was one single option for carrying around the pump – a chocolate brown vest. While not exactly a fashion statement in and of itself, it did get a number of hits and some serious blog attention in those early days – see Got my tight pants on.

In fairness, I suppose there were other options I could have explored for transporting this device – I could have  had my great aunt crochet me a sling to carry it over my shoulder or I could have gone to Paris and found myself a classy “man-purse” to add to my accessories. Or I could have forgone this entirely and just carried it around in my hand like a quasi-calculator-totting-geek. Yet I chose the brown vest supplied by the manufacturer.

With each passing year, my frustration with the limitations of the vest grew. Yet, as the clinical trial ended, and as the pump became more available and more popular as a treatment for PD, I felt buoyed by the fact that such an explosion of interest would surely be followed by a parallel development of a smaller, lighter pump. After all, we live in an age where technological advancements have yielded evermore compact and portable options in a range of devices. Apple, for example, unveils new cellphones every year and most times they are smaller devices with larger capacity. I’m not looking for the Duodopa  10 or the 10X but the Duodopa 2 would sure be nice.

I’ve heard vague rumours that a prototype for a smaller pump are “under development”. I’ve heard the same rumours for the past 3 or 4 years. I think my PD friends in parts of Europe have heard the same rumours in the nearly 20 years this same pump has been used there.

Instead, the steady increase in the use of the duodopa pump has netted not a smaller pump but a growing variety of options for carrying the pump. I’m sure I have every one of these (save the macrame sling!) and, while I welcome the increasing number of choices, there is no one option that is –  for me – the perfect one. It is certainly good to have a few options that one can alternate between. Why I now even have a vest in a different colour than brown – this one is a striking beige!

The latest accruement is an interesting one that arrived in the mail the other day in a plain brown package. It’s interesting in that it positions the pump in a whole new area. It’s an athletic bra-like accessory that holds the pump securely in the middle of the chest area. Off the stomach area and above or below the breast depending upon one’s cleavage and respective comfort.It also has a lot of straps. And buckles. And clasps. And zippers. And I can have it really tight or really loose or really really tight.

I’m pleased to have another option and I look forward to trying this one out. But why is it that I feel so dirty?!

tight like that



* though after going a day or two without it, I am reminded of the benefits the pump provides – principally through the slow and continous release of the medication directly into my bloodstream.


Do Re Mi Mi Mi Mi


Good news for me. Not such good news for those around me. More research results point to the benefits of singing for those with Parkinson’s Disease. This echoes back to a blog I published two years ago – Helpless, Helpless, Helpless, Helpless (reproduced below). The latest study results you can find here.

I’ve always seemed to have a penchant for musicians with voices that have some character – the quivery Neil Young, the droning Leonard Cohen, the gravelly Lucinda Williams or Tom Waits, the nasal Bob Dylan, the symphonic Rufus Wainwright, the piercing Iris DeMent or the multi-layered Joni Mitchell.

I have, at one time or another, in both public and private settings, attempted to sing along to all of these artists (and many more) with a remarkable consistency. Bad (and that’s not a Michael Jackson bad). Off-key. Somewhat out of step. Just bad.

Nonetheless, this hasn’t deterred me. Whenever I hear a tune I particularly love (and there are many),  I am ready to belt it out and sing along. Without hesitation. Yet, as my children have grown older, public “performances” have been virtually eliminated due to their collective embarrassment while private performances are on a steady decline. I just don’t have the gift of a golden voice I guess – and my children are quick to remind me. Perhaps this explains why I have been drawn to such artists – their “savoury” voices are a good camouflage to my vocal prowess.

Now, I could blame this all on Parkinson’s Disease. Since being diagnosed 15 years ago, my voice has definitely weakened. I speak softer and am frequently being asked to not mumble or repeat what I have said. I cannot project my voice in any kind of crowd without amplification. I speak in more condensed sentences and often with pauses that I believe are sometimes physiological and other times cognitively generated. My mouth dries out constantly from the medications I am on.

This might be a familiar refrain to some. You may have heard the story of a brilliant singer whose career was tragically struck short by PD. After repeated commercial success and mercurial rise in the pop charts, this singer was silenced by Parkinson’s. That’s Linda Ronstadt’s story though. Not mine. I was never that blessed with musical talent.

Instead, I have been blessed with a deep appreciation for those with such talent. A joyfullness that comes from singing along to a favorite tune. An appreciation for healthy vocal chords. And a certain degree of vulnerability that still allows me – nay, requires me – to join in whenever I hear Neil sing….

Big birds flying across the sky,
Throwing shadows on our eyes.
Leave us…



(originally published August 17, 2015)

one shot


I heard that Sidney Crosby and the Stanley Cup returned to Canada today and it brought back memories of the very first time  he brought the cup home. Parkinson’s Disease and Stanley Cup parades don’t often come together but they did for this story I wrote in October 2009 (a shortened version appeared in the Globe and Mail that same year).

One shot. We’d settle for one shot. Just one highly unlikely, virtually impossible, but still-have-a-chance shot. After trekking 1200 kilometers, with 5 kids in tow, surely we were deserving of at least one shot.

That spring, we had watched every thrilling moment of the Penguins quest for the Stanley Cup that culminated in a victorious lap around the ice by none other than Canada’s own Sidney Crosby. The youngest captain of any Stanley Cup team to ever hoist the Cup up high! He would raise it once more that year in the small town of Cole Harbour, NS to celebrate his 22nd birthday and share the Cup with his hometown.

My eight year old son, who had just began his “hockey career”, was a very big fan of Sidney and as organizers of the event began to release details, we made our plans to be there accordingly. This was a chance to see Sidney Crosby in person and a special bonus that drew us in. There would be posters of Sidney available for $10 and with each poster you bought, you would receive one ballot for a chance to be 1 of 87 people to have your picture taken with Sidney and the Cup. No autographs mind you. But a picture of you with Sidney! My son’s enthusiasm grew as did the list of people he would buy posters for to increase his chances of being one of those lucky 87. We’d buy 8, maybe 9 posters. That would be 8 or 9 ballots. Not bad chance we thought.

As the days grew closer, estimates of the crowd drew larger – 10,000 – no 20,000 – no 40,000 people expected to be there! In little Cole Harbour?! We had our doubts but we decided to get there early all the same. We dutifully heeded all warnings not to drive to Cole Harbour and face traffic chaos and lined up to take a shuttle bus from Halifax 4 hours prior to the event. Two hours later, we boarded a bus and arrived soon thereafter well in advance of the start of the parade. Already there was a fair size crowd and we could see a spattering of posters rolled up amongst the crowd. I enquired with the staff where I could purchase these posters and our coveted ballots. “Oh, none left. Sorry, we sold out”.

Sold out? Why it was almost 2 hours before the event was to begin and they were sold out?? My heart sank. My son’s heart sank further still. We stood there motionless while more people continued to stream into the park. We had not one ballot. Not one shot.

How was I to console my son? There was no way now that he would get a chance to meet Sidney. With the crowd so deep he might not even get a chance to see him. Sporting his #87 Penguins jersey he looked to me for an answer “What are we going to do now Dad?”

A father does not always have the answers. Nor does he always have a plan. I had neither but fell back onto a well-worn phrase to buy me time. “Well just have to wait and see” I said. “I’ll be right back”. I left him and my family and walked away not really knowing where I was going. As I walked along the street lined 10-15 rows deep with people I wondered if perhaps, during the frenzy of Sidney’s arrival with the Cup, someone along the 4 km. route might inadvertently rise up to greet Sidney and in their ecstatic glee somehow “drop” their ballot and I would swoop down and grab it and benefit from their misfortune. That would be it – our ticket – our shot (albeit one tainted by someone else’s loss).

That was how I envisioned it. That was my back-up plan. Yet, as a 50+ year old man with Parkinson’s, I don’t do too much walking and I never swoop at anything. Still that was the best I could do and off I hobbled to the start of the parade route. As I drew closer, the sound of bagpipes heralded the start of the parade. First, the mayor’s car. Then the local beauty queen. A radio DJ in another car. A teammate of Crosby’s in another car. And then, atop a big red fire engine – Sidney and the Cup! My plan of action was set. And so it began. I walked alongside the firetruck, looking up at Sidney and down at the ground as people rose to their feet. Back at Sidney. Back to the ground. Sidney. The ground. Sidney. Ground. All the while, my Parkinson’s exaggerated movements – flailing arms, somewhat gaited walk and blank stare – were accentuated.. After several minutes, I noticed the presence of security guards – on and around the firetruck – each of whom were looking at me and speaking into concealed microphones. A policeman on a motorcycle drew ever closer and did the same. Was I stalking Sidney? Was I a threat to be diffused? Was I about to try some horrendous extortion of the Cup?? That, combined with the hands of all those in the crowd that held firmly onto their ballot, suggested that perhaps I’d better move along faster and rejoin my family. Dejected, but not arrested.

As I tried to return to the centre where I’d left my family, the sea of people had now turned into a tsunami. I waded through the crowd to get back to the centre but along the way, I noticed that behind the main stage, there were trucks loaded with TV gear, moving vans, security guards, storage containers. But virtually no people. From here, at least we would get a glimpse of Sidney – or at least the back of his head. That was about the best we could hope for. I recovered my family and proudly showed them the spot I had discovered. They weren’t impressed. From our vantage point, if you strained your neck, you could see the side of the stage that had been fenced off for Sidney to enter. Collectively, we strained our necks and waited for his arrival.

First came the mayor. The beauty queen. The others. Each stopping at the side and disembarking. Then came the clang of the fire bell. Sidney was coming! As the truck approached the stage, we gave our necks one last good stretch and readied for it to stop. But it didn’t. It kept going. Past the side of the stage. Right around to the middle of the back of the stage. Right in front of us!!

This was it. Our one shot. “GO” we shouted in unison to my son. Urging him to cross the security line and head for the firetruck to greet it’s descending member. “GO!!” “STOP. BEHIND THE LINE” retorted the security guard. As we pulled back our dejected son, another more severe breech of security broke out further down the line and guards left their post to assist.

“GO. GO.” we again urged. My son, jersey in hand, rushed directly in to the firetruck just as Sidney descended the stairs. “Happy Birthday Sidney! Would you sign my jersey?” he enquired and passed him the pen. They conferred over where he was to sign it and on the number 7 he did. Lucky number 7. My son’s hockey number. He had it. We had it. Our one shot. Scored!




Congratulations, Jimmy Choi! You’re our hero!

I received this tweet the other day from the Michael J Fox Foundation and I must admit that it left a bitter taste in my mouth. I am only vaguely familiar with the television program American Ninja – a show where contestants race through an insane obstacle course like human pinballs. Like many reality shows, it all seems a little pointless to me.
Having said that, I suppose for those individuals who take on this “challenge”, they probably have their reasons – be it to face and overcome Herculean barriers, perhaps to showcase olympian-like physical strength or dogged determinism, or the rangy warrior facing a flurry of foam foes and blows.
Still, I don’t get it.
 Jimmy Choi probably does though. The 41 year old from Illinois was one of the contestants this week and what set him apart from others was that he happens to have Parkinson’s Disease. He was diagnosed 14 years ago so even the most cynical critic must give him credit for such extreme effort. Props, Jimmy!
However, the Michael J Fox Foundation gets no props on this one. Congratulations, Jimmy Choi! You’re our hero!  Our hero? Really? What exactly makes a man who runs through foam a hero? Is there an inference here that People with Parkinson’s (PwP) should look to a person like Mr. Choi as some kind of role model? If so, this is fiercely off the mark. Most PwP have much more severe symptoms and limitations brought on by their disease than does Jimmy.
Might I suggest that if the Foundation is looking for heroes, they should look to the men and women who struggle to live with the day-to-day challenges they face in living with PD. They should look to those partners of PwP who give up so much of their own lives to help support and care for the PwP in their family. They should look to the advocates and activists in the Parkinson’s community who are working so hard to battle this disease. They should look to the members of the medical community who give so much ongoing support to PwP.
These “heroes” may not have raised $100,000 for MJFF. They might not have any PR cash coattails upon which to ride but it seems to me that most days when life gives these “heroes” lemons, they make proverbial lemonade. They are our heroes.
Me, I just sucked on the lemons today.
I’ll try to be less tart next time.




We interrupt our regular programming to present this musical interlude of some of the best Parkinson’s music you may ever hear! Well, in fairness, they are technically not about Parkinson’s Disease in particular, but whenever I hear them these days, they resonate in a different way.

If you’re a PWP (Person with Parkinson’s) perhaps you have similar songs that do the same for you. Did I miss your favourite? Add it in the comments or drop me a line and I’ll be happy to add it to the collection!

Here’s my favs:

  • This was an unexpected hit for the Canadian band The Guess Who in 1965. Shakin’ All Over


  • Shake, Rattle and Roll by Big Joe Turner in 1954 audio only


  • Whole Lotta Shakin’ Goin’ On by Jerry Lee Lewis. Here’s a live version from 1957.


  • Hippy Hippy Shakes a hit for The Swinging Blue Jeans in 1963. audio only


  • Eric Burdon and the Animals tried to cash in on a dance craze with Shake in 1966.



  • Let’s Shake by Teenage Head. A live version from the early 90’s.


  • It goes against my better judgement to  include this in any “best of” list but, from 1976, KC and the Sunshine Band perform live on Soul Train their iconic piece Shake Your Booty.



These don’t necessarily make a “best of list” but I thought someone may want something original from people with PD themselves. These aren’t earnest tales of woe but attempts to have a laugh about PD. Here’s one from Mitch Faile and a less polished, but equally authentic one, from Beverly Ribaudo.