Tag Archives: community

What’s Goin’ On??

questions_drive_me_crazy_by_x_posion
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.

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Perky Parkies?

smile_by_bethel1113
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

Stuffed , the American way

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1:12 Scale Thanksgiving Dinner by fairchildart, deviantart
It’s Thanksgving in the United States of America. This year the calendar means an extra long weekend is given over to carnivorous pursuits, punctuated by pigskin and other family-focused activites for many in the land of the free and the brave.. Here, north of the border, I hear rumours from American friends and relatives that the turkeys are bigger, the hams hammier and the pies…the pies never end! Meanwhile, in Canada, most of us have run out of turkey leftovers from our October Thanksgiving. There might be some leftover gravy at the back of the frig and an unopened can of cranberries. But it seems like we’re going to have to scrounge to see what we can scrape together for a meal. After our grub, we too are getting ready for pigskin. There is only one football game this weekend in our country – Sunday night – our Super Bowl  equivalent – The Grey Cup from the centre of Canada – Winnipeg – featuring the Eskimos and the RedBlacks (think lumberjacks). Inevitably, the Grey Cup is a great game -I predict high scoring, lots of dramatic plays and a final score of 44-42. Or 37-33. Or something like that.

Anyway, this weekend, some lucky Canadians get both Saturday and Sunday, off.  I understand that in the US, many will get a 3,  4 or even 5 day long weekend this year! We can’t seem to get a single November Statutory holiday – any suggestions you can share with your jealous  neighbours?

The following post is reprinted from last month when we marked Thanksgiving. I hope, in the context of American Thanksgiving, it’ll ring true with some folks below the 49th. To my American friends and family who missed the Canadian callout, here’s a reprise. To give thanks.

 

It’s Thanksgiving and, as usual, I’ve been thinking about all that I have to be thankful for. Like the proverbial turkey, I’m stuffed to the brim! This year, I thought I’d share this in a more public fashion through my blog. It may be a little self-indulgent, but permit my excess. If it’s not to your taste, and you are so inclined, feel free to scroll down through the “meal” and all its accouterments and head straight for the dessert. Bon appetite!

the aperitif

♥ the folks that i meet regularly and make my day – from the postal carrier to my neighbours to fellow dog walkers. While the cast changes with the seasons and through the years, they are a constant.

♥ those in the service industry – from the grocery store cashier to the tradesperson to the civil servant – whom I encounter that enjoys their work, are genuinely helpful, and can make or break a day.

the appetizers

♥ my classmates – people who I see every week at dance class or in aqua therapy, or whatever weekly pursuit happens to be the “soup-du-jour” of my continuing education!

♥ on-line communities – I belong to a number of on-line information and/or support groups – a lot of them related to PD. These are often a source of good information, discussion and even entertainment. Almost daily I make time, even but for a few minutes, to these groups

the turkey (or Tofurkey if u prefer)

♥ my family – my parents and my sister are unwavering in their support. I cannot imagine how I would have got along without them. I am truly indebted to them

♥ my children – though well on their way to becoming their own persons, and not my children, they’re still young enough to be embarrassed by signs of public affection so…T,E & W…thank you and lots of love, Dad

♥ my wife – it can’t be easy married to me and my PD – requires a well of strength that one might not expect! I’m also in many ways not the man she married yet she perseveres.

the sides

♥ my friends – despite everything I’ve done (or haven’t done) over the years, I have a group of friends from school, work and my “retirement” years, who I am so appreciative of. They are not really “sides” to this “meal” – they’re just as important as the “main dish” but this isn’t a vegan meal. We gotta have turkey. We gotta have sides!

♥ my extended family – my aunts, uncles, cousins, in-laws, out-laws (former in-laws), ex’s, etc. – see above! Too many to mention, too much they have given!

♥ my teachers, my mentors, my employers, the leaders who took a chance on me and hired me – I am ingratitude (cue Celine Dion – I think i can fly!)

♥ my medical team – I’m fortunate to live in Canada and to have had routinely good care and support from a range of health care staff. Truly dedicated to helping.

the dessert

♥ the readers of my blog – especially those who have been long-suffering followers – it’s very special that you have cared enough to read my rants and raves and to give me feedback through it all. Much appreciated.

the after dinner espresso

♥ to cast of thousands that, through the years, have touched my life in perhaps subtle, but incomparable, ways and haven’t been mentioned above. I think of the kids I taught in elementary school, parents of my kids’ friends, my teammates (baseball, football, hockey), my early classmates, radio folk, deaf and hard of hearing consumers whom I worked for, musicians and artists and writers I have known or admired, work associates, Board members and so many in the voluntary and educational sectors! Though my memory sometimes fails, inevitably something will trigger a thought – ring that bell – and your presence reverberates through my being once more. Thank you. Ring them bells!

Stuffed

1:12 Scale Thanksgiving Dinner by fairchildart, deviantart
1:12 Scale Thanksgiving Dinner
by fairchildart, deviantart

It’s Thanksgiving in Canada and, as usual, I’ve been thinking about all that I have to be thankful for. Like the proverbial turkey, I’m stuffed to the brim! This year, I thought I’d share this in a more public fashion through my blog. It may be a little self-indulgent, but permit my excess. If it’s not to your taste, and you are so inclined, feel free to scroll down through the “meal” and all its accouterments and head straight for the dessert. Bon appetite!

the aperitif 

♥ the folks that i meet regularly and make my day – from the postal carrier to my neighbours to fellow dog walkers. While the cast changes with the seasons and through the years, they are a constant.

♥ those in the service industry – from the grocery store cashier to the tradesperson to the civil servant – whom I encounter that enjoys their work, are genuinely helpful, and can make or break a day.

the appetizers

♥ my classmates – people who I see every week at dance class or in aqua therapy, or whatever weekly pursuit happens to be the “soup-du-jour” of my continuing education!

♥ on-line communities – I belong to a number of on-line information and/or support groups –  a lot of them related to PD. These are often a source of good information, discussion and even entertainment. Almost daily I make time, even but for a few minutes, to these groups

the turkey (or Tofurkey if u prefer)

♥ my family – my parents and my sister are unwavering in their support. I cannot imagine how I would have got along without them. I am truly indebted to them

♥ my children – though well on their way to becoming their own persons, and not my children, they’re still young enough to be embarrassed by signs of public affection so…T,E & W…thank you and lots of love, Dad

♥ my wife – it can’t be easy married to me and my PD – requires a well of strength that one might not expect! I’m also in many ways not the man she married yet she perseveres.

the sides

♥ my friends – despite everything I’ve done (or haven’t done) over the years, I have a group of friends from school, work and my “retirement” years, who I am so appreciative of. They are not really “sides” to this “meal” – they’re just as important as the “main dish” but this isn’t a vegan meal. We gotta have turkey. We gotta have sides!

♥ my extended family – my aunts, uncles, cousins, in-laws, out-laws (former in-laws), ex’s, etc. – see above! Too many to mention, too much they have given!

♥ my teachers, my mentors, my employers, the leaders who took a chance on me and hired me – I am ingratitude (cue Celine Dion – I think i can fly!)

♥ my medical team – I’m fortunate to live in Canada and to have had routinely good care and support from a range of health care staff. Truly dedicated to helping.

the dessert

♥ the readers of my blog – especially those who have been long-suffering followers – it’s very special that you have cared enough to read my rants and raves and to give me feedback through it all. Much appreciated.

the after dinner espresso

♥ to cast of thousands that, through the years, have touched my life in perhaps subtle, but incomparable, ways and haven’t been mentioned above. I think of the kids I taught in elementary school, parents of my kids’ friends, my teammates (baseball, football, hockey), my early classmates, radio folk, deaf and hard of hearing consumers whom I worked for, musicians and artists and writers I have known or admired, work associates, Board members and so many in the voluntary and educational  sectors! Though my memory sometimes fails, inevitably something will trigger a thought – ring that bell – and your presence reverberates through my being once more. Thank you. Ring them bells!

Modelling frailty

kspeidell_factsarguments_10-1

The following piece was published in Facts and Arguments, The Globe and Mail,  April 29 2015 

‘I’m a model. You know what I mean? And I do my little turn on the catwalk.”

It’s been almost 25 years since Right Said Fred made this declaration in the brash song I’m Too Sexy.

At age 57, I’m ready to make that daring declaration myself: I am a model. Not perhaps what you might expect in a model: I ply my craft far from the runways of Paris, Milan and New York. My steps are more gingerly taken; cocky is not how you’d describe my demeanour – ambivalent, apathetic, angry might all come to mind instead about the facial “mask” I wear. It is a remote possibility that I’ll ever be featured in GQ.

In my early 40s, I was diagnosed with Parkinson’s disease, a degenerative brain disorder whose symptoms include muscular rigidity, tremors, slowing of movement, a shuffling walk and difficulty with balance. When I walk, often I’ll be lumbering along, swaying, dragging one foot and occasionally flailing my arms. Parkinson’s also brings such cognitive changes as memory loss and confusion, and often depression – all of which I can definitely say I know too well. Not exactly how one thinks of a male model.

But yes, I am a model. Not in the high-powered fashion industry but in the highly underrated, sometimes banal, not-for-profit parenthood industry.

I’m a dad to my three kids, a stay-at-home father for seven years, a parent for more than 20.

“What’s so great about that?” you may wonder. “While it’s one of the most important jobs, it’s not unique, and isn’t almost everyone doing it?”

Well, yes and yes. To a greater or lesser extent, and for better or worse, children look to their parents as models throughout their lives.

Typically, parents start on this journey with the best of intentions and later question our measures of “success.” As my Parkinson’s has progressed, I’ve placed my behaviours, thoughts and actions increasingly under the microscope. I’ve often thought about how my children see me as a “stay-at-home” father, in contrast to when I was employed as a teacher and social-service administrator. How has this shaped their model of what the “working world” looks like? Has it in some way diminished a father’s role and contributions? Would they all answer, as my eldest did, “That’s just the way it is – you’re a different kind of dad”?

When feeling tired or weakened (which, unfortunately, is often), I find it challenging to behave, speak and listen in ways one would consider an appropriate parental manner – with interest, respect, concern and compassion. It can be a real struggle. Are my children aware of this? Do they interpret my words and actions through a Parkinson’s “filter,” or simply find ways to cope?

As my ability to carry out daily activities becomes more limited, and constraints are imposed on more vigorous activities such as travelling, attending special events, visiting extended family or just doing chores, do they see me as no longer contributing to a healthy family life?

On the other hand, having a parent who is disabled presents them with a wonderful opportunity. Seeing their father try to cope with the wasting effects of a degenerative condition gives them a sense of how we all face challenges in life. It offers a connection to others in the community dealing with other difficulties or conditions.

I hope I’ve helped them develop a sense of empathy and caring, reflected through their volunteer work at a food-sharing agency, their extra-curricular volunteer work at school and their volunteering abroad, as both my daughters are doing at present. Or, more simply, in their considerate daily interactions with others.

My children are witnesses to my daily efforts to live life to the fullest. I write a blog, am engaged politically in the community and I do volunteer work myself. I walk daily, take aquafit classes with my mother and have begun a dance class for people with the disease. The dancing is particularly exciting for me. Dancing is a way of living life at its best; and my best, given the degenerative nature of my condition, is where I am now.

I hope that my children have developed an appreciation for the value of good health and the importance of support from family and friends. This is a lesson I would like to have learned long before I did, so fostering it for them is all the more important.

Disquiet, discomfort, illness, suffering, perseverance – as well as gratitude, commitment and love – are all very much part of our shared experience, this thing we call “life.” What better way to model these characteristics than to live with them each day?

I am a model. And I’ll do my little turn on the catwalk.

Robert Kendrick lives in Port Credit, Ont.

Thanks to all who followed my blog for the month of April, Parkinson’s Awareness month. I know you must feel deluged by the daily postings that was “My Blog – Greatest Hits Vol. 1” ! I’ll be back soon (but with much less frequency) with new material and look forward to hearing from you. Thanks! rk

GMO OMG

poster

Originally published November 22, 2014

I’m no Siskel or Ebert but I recently saw a film that I’d have to give “two-thumbs up” to. GMO OMG by Jeremy Seifert was released in July 2014 and features one man’s search for answers about genetically modified organisms (GMOs) and how they affect our children, the health of our planet, and our freedom of choice as consumers.

It struck me that, while perhaps not directly related to Parkinson’s, there may be some common chords between the issues of PD and GMO. For people with Parkinson’s, a chronic neurological disease of mostly unclear origin, an increasing number of studies and papers have been reflecting on toxic chemicals used in our environment as possibly giving rise to PD and other neurological conditions.

There is speculation that everything from exposure to chemicals such as Roundup, and the use of “super corn” seeds that completely wipe out all their enemies, will have serious implications for the environment. Further, there are no long term research results to ensure the safety of the people and the earth concerning such products.

Now, I don’t pretend to be a scientist (does a social scientist still count?!?) so, in Canada, I turned to David Suzucki Foundation* to help further my understanding. GMO’s — or genetically modified organisms — refer to the plants or animals created through merging DNA from different species. The first GMO crop (the Flavr Savr tomato) was approved by the FDA in 1994 and, since then, a variety of corn, soya, sugar beets and canola have become common local crops in Canada. Others, such as cottonseed oil, papaya, squash and milk products are imported from the USA into Canada. In a mere 20 years, GMO ingredients have made their way into most of the processed foods available on Canadian grocery shelves. Apples, potatoes and wheat are all in the lineup for approval.

GMO crops, when first introduced, were touted as the answer to world hunger. The argument was that by developing pesticide and herbicide resistant crops, farmer’s would be able to increase their yields and decrease their costs. This has not proven to be the case. Instead, bugs and weeds have become increasingly resistant to the widespread applications of these chemicals, leading to increased use of both. More spraying means more costs for the farmers, more damage to the environment and more health concerns.

It also means more product purchased from the seed producer. The companies that develop and patent GMO seeds are the same companies that develop and patent the pesticides and herbicides to which the unique seeds are resistant. Monsanto is the largest seed company in the world and owns about 86% of GMO seeds sown globally. It is also the parent of Roundup.

The safety of GMO foods is unproven and a growing body of research connects these foods with health concerns and environmental damage. The American Academy of Environmental Medicine suggests there is more than a casual association between GM foods and adverse health effects and that GM foods pose a serious health risk in the areas of toxicology, allergy and immune function, reproductive health, and metabolic, physiologic and genetic health.**

In light of these growing concerns, most developed nations have at the very least, adopted policies requiring mandatory labelling of GMO foods and some have issued bans on GMO food production and imports. In Canada we have neither. As consumers, we are largely unaware that the foods we choose contains GMO ingredients. It is this basic right to choice that is behind the growing movement to have GMO foods labeled. While environmental and food advocates lobby for labeling, other groups, like The Non-GMO Project, have created voluntary non-GMO certification to facilitate consumer information.

GMO OMG is an informative and alarming call to action for those concerned with our health and environment. It is produced in a very accessible format and the story unfolds in an engaging manner. Good soundtrack too! It’s not likely to show up in your local cinema complex but try your local library or order on-line.

* (Understanding GMOs) http://www.david suzucki.org.

** Truth11.com

I’m not angry anymore

Originally published November 4, 2014

I’m not angry anymore. And therein lies my problem.

You see, for years I’ve been espousing the importance of being positive, confronting Parkinson’s and the challenges it has brought my way. Putting my best foot forward, remaining optimistic, retaining a sense of humour. Most health care providers, literature, on- line resources and fellow Parkies will tell you the same thing.If you’ve been a regular or even occasional reader of this blog before you will likely recall a post or two that did this very same thing. I may not be a pollyanna but I have come to appreciate the benefits of a sightly more positive approach.Why even last month, with the help of a few fellow Parkies, I detailed the “good things” PD has brought into our lives!

So, have I suddenly turned bitter and disenchanted? Abandoned this emphasis on positivity? Not at all. I’ve just been thinking of late that I need to get a little more anger in my life…to stoke up the proverbial “fires of discontent”…motivate me to be more active and engaged.


Well, perhaps not that angry but you get the idea I hope.

Not to do so will result in an increasingly insular life and this, for me, is not a good thing!

I must confess that, as much as I still trumpet a positive approach to living with PD, I have many moments when I am extremely challenged to be positive. When I’m tired or overly stressed.When I struggle to do things that used to be routine. When I react inappropriately to something my kids have done or said. When I’m having a particularly bad day physically. On such occasions, I need to endeavour to do better.

And, on such occasions I will try.

But, for the rest of the time, I’m going to be mad as hell and I’m not going to take it anymore!

So what becomes of you, Mr. K?

Originally published on May 15, 2013

It’s now been five years since I went to work one October day and realized I was no longer the teacher I wanted to be. That wasn’t the only thing to have changed with advancing Parkinson’s.

I was no longer the father I wanted to be.
I was no longer the lover, the brother, the son, the friend I wanted to be.
I was no longer the person I wanted to be.

Yet foremost in my mind that day were the kids I was to face – still new to me as this was a new year at yet another new school for me. My third change of schools since going on part-time disability with Parkinson’s Disease. I was starting to show increased signs of PD and felt more challenged than ever before. How do these kids perceive me when I’m in this condition? Am I seen as a teacher with little patience? An irritable or frustrated teacher? A teacher with little emotive responses? Was I “lost” or scattered as I made my way from Grade 2 music to Sr.K playtime to Grade 3 Social Studies to Grade 1 gym to Grade 2 Science? How was I helping them? How was I demonstrating my professionalism, my skills as a teacher, my love of teaching and my joy in working with these young ones?

As I started to pack up my trolley with the mornings materials for each of the classes, I decided I could not. I could not continue. I could no longer be that teacher I had been. I was doing no one any favours. It was time to recognize that this wasn’t helping anyone. I proceeded to the Principal’s office and informed him that regrettably, I was done. It was not fair to the children or my colleagues for me to continue. I was met by complete understanding and within an hour, I was packed up and gone from the school (though my moniker “ Robert Kendrick 1.0 FTE” likely still surfaces on papers at the school to this day to the puzzlement of many!).

This was not an impulsive, spur of the moment decision as I had been preparing for the eventuality that I hoped would not come. Yet it did come and on that October day, I made a life-altering decision. I don’t know that there was any other one I could have made.

But I do know I was no longer the teacher I wanted to be. No longer the teacher these kids needed me to be.

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reelin’ in the years

steely-dan-reeling-in-the-years-1973

originally published Sunday, April 21, 2013

This could be one of those “back in my day, we used to walk 2 miles to school..uphill..both ways!” stories.

Or it could be a story about the frenetic pace of technological advancement and the gargantuan efforts of a man and his aging demographic counterparts to not get swept away in a tsunami of change.

Or it could even be a made-for-tv story, set to an emotional soundtrack with swelling orchestral and sentimental strings, wherein we learn of one man’s efforts to fight against the ravenges of Parkinson’s Disease that threaten to overtake him and his young family.

It could have been all these things and perhaps more.

But the truth is, it’s none of these. Perhaps less.

The truth is, that in a day and age in which people instantaneously tweet their comings and goings, daily facebook updates are posted, Skype and emails abound – I am as frequently feeling eclipsed by the volume. I feel as though, with each passing day, this gulf grows between what friends, family and colleagues have put “out there” and what I have been unable to do, neglected to do or even deemed worthy of sharing.

Initiating this blog is my attempt, such as it is, to bridge this gap. At least initially. A chance for our divergent paths to once again cross. A chance, for those who have paused to wonder “what ever happened to..” to perhaps fill in some blanks. An opportunity to right all my wrongs in one fell swoop! And then. move forward. To where, and for what, I do not know. I’m sure some don’t particularly care. But, if you’ve read this far, thank you for caring. Let’s start reelin’ in the years!

Where have all the children gone?

I remember undertaking a career change some 13 years ago with the express purpose of spending more time with our children as they grew. I’m sure its a familiar refrain that I sing, but who knows where the time goes? Our oldest is at U of T, and our youngest will be entering his final year of elementary school. Sisters and brothers, yes. But very much becoming their own persons!

I had an incredibly insightful, and emotionally evocative paragraph to add here with my thoughts on parenthood, the pride I have of our children, yadda yadda yadda but as this is an open blog, my kids have vetoed its’ inclusion. Gives you some sense of who’s steering this ship 🙂

Parkinson’s takes hold

I was diagnosed with Parkinson’s Disease in September 2000 at the age of 43. I was advised by my original neurologist that I would be in a wheelchair in 5-10 years. While initially devastated by this news, as time went by, I became increasingly combative with this news. Each anniversary found me proud of my continued mobility and, as I approach the 13th anniversary, that wheelchair remains a part of some distant future.

Still, in the past few years, PD has seeped into, and solidified a presence, in every aspect of every day life. With the exception of 4 hours at night when I am asleep, PD brings with it varying degrees of stiffness, slowness of movement, muscle pain and weakness, reduced dexterity, tremors, cramping, dystonia (curling of toes), cognitive dysfunction and weariness. My cocktail of meds have no doubt helped, though their effectiveness wains over time and doses require regular adjustment. Fortunately, I have had good care provided from a neurological team at Toronto Western, and, in September 2011, I was given the opportunity to participate in a clinical trial for a new drug-delivery system for PD wherein my main PD meds are delivered via slow release by a pump i have strapped to my body. This began with a week of nasal injection of the drug before surgically implanting a tube that henceforth is used for on-going infusion. I am also able to periodically adjust the dosage throughout the day when I require higher levels.

While I was pleased with many of the benefits I received from this new treatment, problems at the site where the tube entered my body became too much to bear and in July 2012 I had the tube removed and temporarily resumed my regular course of oral medications. In January 2013, the tube was again implanted and I returned to the clinical trial. To date, things have been going very well, thanks in part to early intervention and constant support from my neurological team and community in-home nursing provided through CCAC.

In addition, I am fortunate to have a health support system that extends well beyond this clinical trial. From my family doctor, local pharmacist, physiotherapist, massage therapist, and of course my family and friends. It’s hard to imagine going down this road without them.

My drug of choice

cfmublue
Don’t get me wrong – I’m grateful for all the scientific advancement in the treatment of Parkinson’s, but one of the best therapies for me continues to be keeping a sense of humour about it all for as long as I possibly can. I say a sense of humour because sometimes my humour can be kinda dark and perhaps not always appreciated (or just out and out not funny!). And I say try (or at least imply try) to keep a sense of humour because sometimes things like dystonia just aren’t that funny at all!

Yet, in the face of mounting advancement of PD, keeping a sense of humour is increasingly challenging. Discouragement, loneliness, depression and social isolation have, to one degree or another, all been a part of my life of late with these advances. I need to make a concerted effort to get exercise, to connect with friends and family, to pursue outside interests and get engaged in projects or activities where I feel I am making a contribution to the community. The best example of this was undertaking the collection of archival material, and the subsequent celebration of the 33 1/3 year anniversary of Hamilton’s community radio station CFMU 93.3 at McMaster University. For 18 months prior to the celebration in May 2011, I connected with many people from those early days of the radio station to collect material from that era and assembled a 3 disc package and program book that was released on the anniversary. The project was a labour of love and the opportunity to reconnect with so many friends and colleagues from that time was wonderful.
Yet, when the anniversary was over, it left to a certain degree, a void in my life that hasn’t yet been filled. I’ve taken on a few volunteer activities, done some work around the house, helped out with some of our kid’s activities and taken the opportunity to travel as much as I am able. Still, I need to be involved in activities where I can have a better sense of contributing to the community.

Next time ’round I’ll be writing more about that (and more!). Until then,

All good things,

rk