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!

 

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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!

 

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:

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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??

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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?

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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

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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?!

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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.

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living with Parkinson's Disease…and more!