got my tight pants on – part deux


Originally published December 3, 2014

After exhaustive research and stylist consultations, I have decided to suspend my qualitative research and opt for a more “participatory-based” approach. Why, dear reader, I’m asking you to make the call! Simply print and cut out the images below, place them wherever you like and see what style works! Why it’s even fun for the whole family!


got my tight pants on

Originally published December 3, 2014

Today was a dull and dreary early winter day. No sign of the sun. A chill in the air. Nothing in my calendar to coax me out of the house. Were it not for a scheduled afternoon visit of a few friends, it was one of those days I might have well lounged in my pj’s or perhaps my long underwear all day. Heck, if really pressed, I might even have donned some sweatpants.

But, alas, company was coming so I felt the least I could do was dress-up.

I put on a pair of jeans. Blue jeans. A nondescript shirt (unless you consider “olive- coloured” to be a descriptor) and my everyday “brown vest”. This “brown vest” is what holds the enteral pump that dispenses my Parkinson’s medication by slow-release 16 hours a day. For almost three years, I’ve sported the “brown vest” to the grocery store, to my kid’s school, to weddings and funerals. To walk the dog, go out for dinner, rake the leaves, visit the doctor, have coffee with a friend or lunch with my folks. To the pool, on vacation, to church or the bakery – the “brown vest” is my constant companion. Lest you think I might tire of it, or that it might emit a certain tangy odour, rest assured that the drug company has generously provided me with a number of such vestibules – a few in each of the 3 sizes it comes in to correspond with my corresponding weight gain and loss – but all of them cut from the same stylish brown. Or Mahogony Brown as GQ might call it. Or Townsend Harbour Brown of Benjamin Moore fame. It’s brown though – that’s the only option. Brown. Get it? I think you get it 🙂

At any rate, my friends came. I made some cappuccinos (nicely, browned crema). We talked. We laughed. We got caught up. And then, there was a sudden turn in the conversation.

“Wasn’t it a gloomy day. Wasn’t the yard looking gloomy without the colourful leaves of fall. Wasn’t everything in the news gloomy. And speaking of gloomy, what’s with your clothes? We know you have a bitch of a disease RK, but don’t you think you could brighten up a bit?”

Despite my best intentions earlier in the day, here I was being berated for my dreary wardrobe! Now, those of you who know me, know that I have never been a fashionista. Yet it got me to thinking that indeed, what I wear these days is more often then ever before affected by my health. When I am in so much physical discomfort from my PD, I’m looking for at least a shred of comfort in my clothing. Perhaps, there might be an inverse relationship here worth exploring – were I to “brighten up” my wardrobe, would it “brighten up” my health? Not exactly fodder for a PHD dissertation but certainly blog-worthy material. In Part 2 of this blog, look for the fieldnotes from my qualitative research on this compelling question.



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


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!

Oozing caramel, melting chocolate


Originally published October 1, 2014

Shed Pounds or Your Money Back!!

How many times have you looked in the mirror and thought “I wish I could just lose a few pounds around my waist…a few inches off my thighs…that double chin I seem to be developing”. Do you wish that there was an easy way you could just make it all disappear? Well, I am here to tell you today that there most certainly is an easy way! Thousands of people just like you have already had their wish come true and you can too! For a limited time only, you can get the results you want without all the muss and fuss of dieting or calorie counting like so many other programs require. Just one, simple step and you’re on your way to that waist you so desire…those slender thighs…that chiseled chin! Interested? Ready to sign-up?? It’s really very simple – get PD! Yes, whether it’s through exposure to toxic chemicals in the environment, or some bad chromosome passed down through your family genes, getting PD will set you free from all these weight-loss woes! But wait! That’s not all! If you act now, you will also receive at no additional cost to you, stiffness, rigidity, tremors, cramping, sleep and cognition problems – to name but a few.

But then (and by then I mean at present, this year, NOW) my medications have been working. I rarely have long periods of dyskInetic behaviour. And I have more than a few extra pounds with me. I’ve had to be more conscious of what I am eating and try to be more physically active which, in the long run, are probably good practices. Practises that I need to practise a bit more!For now, I feel bloated, heavy and out of shape. This, when my PD drugs are working. Enough to make one long for the good old days when my PD drugs weren’t working!

As you can probably tell, I’m writing this somewhat tongue-in cheek and I’m not totally sold on the idea that Parkinson’s Disease is a good weight loss program. Though I have, at times, been the unexpected beneficiary of such providence. When I was at my physical worst – when dyskinesia ruled my body for most of the day with my flaying arms and legs in constant motion – I burned off so many calories! I could eat whatever and whenever I wanted! Chocolate bars, chips, ice cream. Midnight snacks. More chocolate bars. Just a few minutes of “shakin-all-over” and it was gone!

Oozing caramel, melting chocolate.

What nice memories…

a good time to die

pat tired-1
Dead Tired – Gopixpic

Originally published January 2, 2015

When first diagnosed with PD some 14 years ago, I remember being plagued for weeks by thoughts of my last days. I couldn’t deal with all of the horrors associated with end stage Parkinson’s. I still can’t. Yet, if there is any lesson I have learned, it’s to not precipitate about a future you cannot control. Further, as Michael J Fox has pointed out, there is little use in worrying about that now – to do so would mean you actually live through such horrors twice – once in the present and again when you actually arrive at that point.

Of late, though, as PD has taken more of a toll, and as I have seen friends and family dealing with issues of mortality, I find it hard not to drift back to thoughts of death and dying. Not in an obsessive way nor centered on my state of health in those “dying days”. More focused on consideration of how I am to live the rest of my years. What is it that makes my life valuable? What is it that I can offer that makes my life meaningful? How long will I want to live in advanced years with a declining body and mind?

Recently, I heard an interesting interview on CBC radio’s The Sunday edition with Dr. Ezekiel Emanuel, an oncologist at the University of Pennsylvania, who says that he wants to die at age 75. He is currently 57 years old, apparently quite active, has no terminal illness and no plans to commit suicide. Yet he says that he would be doing society and loved ones a favour by dying at 75. “A good life is not just about stacking up the years and living as long as possible. People need to focus on quality of life,” he says. “Setting an actual date for a good time to die helps you focus on what is important in your life.”

He says when he reaches 75 he will refuse all tests and treatments, including the blood pressure medication he takes now. He’s not suggesting people kill themselves at 75 but, rather, let nature take its course. As the CBC interview points out, it’s a controversial stance, but one that resonates in an age when medical science can prolong life, but often at the cost of quality of life.

If you want to hear the full interview, you can listen here.

So, what’s a good time to die?



Originally published August 14, 2014

I haven’t posted anything to this blog in sometime for a variety of reasons. However, today’s news that comedian and actor Robin Williams had been dealing with depression and Parkinson’s brought me back to this piece. Ironically, the last time I worked on this draft was one year ago. I had abandoned it as not being satisfactory. Now though, perhaps to help move forward, I’ve decided to post it as i wrote it then.The water is a little deeper now and a little more clouded but hopefully I’ll be able to “towel-off” and get back to it.
All the literature on dealing with disease emphasizes the importance of a positive attitude in coping with your condition. Read published memoirs or speak to most “seasoned” veterans of PD, and you’ll no doubt hear a testimony to staying positive.

To date, this hasn’t been a problem for me. Fortunately, for the most part, I have been able to keep my head above water despite the rising current of physical challenges, adjusting treatments and the general demands of daily activities. I have tried to keep my PD in perspective – my illness shouldn’t define me. And it hasn’t. I have tried to live more for the moment and to appreciate that there are many others who face significantly greater challenges, with far less support and/or resources, than I.

And all of this is still true. I still try to keep this perspective. Yet, of late, I must admit I’ve been flailing.

Perhaps it’s because for the first time I’m feeling “old”. My travels in Europe made me acutely aware of the physical limitations I face. I feel the weight of lugging a pump for the enteral delivery of my medication. My children are becoming increasingly independent and, since leaving teaching, I have been unable to find my niche in the community. I want to be able to carve out a role for myself – to feel that I am making a contribution to my community – to have more of a sense of purpose to my day.

Yet more and more, I’m feeling exceptionally tired and challenged by the activities of daily living. I’m struggling with my roles; with a discouraging sense of self. My motivation to accomplish things all too often seems to be waning. I want to address these personal issues yet, the more that I reflect on this ‘self’, the deeper I wade into an ego-centric whirlpool.

So, I guess I’m in pretty deep.

And despite my aquatic prowess, gained from many summers in Georgian Bay, I’m not sure I know how to get out of this.

I am, however, not without resources. I have a good health care team, that includes a Psychiatrist with whom I am regularly consulting. I have the support of all my family and a network of friends that are extremely important. And I still have the desire to see things improve. I am reminded of lines in Loundon Wainwright III Swimming Song: This summer I went swimming. This summer I might have drowned. But I held my breath and I kicked my feet. And I moved my arms around. I moved my arms around.

Hold my breath. Kick my feet. Move my arms around.

PD in Prime Time


Originally published on October 21, 2013

This fall, as the TV networks roll out their latest wares, I confess I had at least one show on my must-watch list. This September, Michael J Fox would be returning to NBC starring in a weekly comedy show called “The Michael J Fox Show”. My interest does not originate from his earlier acting career when he starred in syndicated shows such as Family Ties or Spin City nor from his many successful films including the Back to the Future series. While I admired his success, particularly as a fellow Canadian, these movies and TV programs were of little interest to me – just not my cup of tea.

Nonetheless, when Fox walked away from a very successful acting career in 2000, he did so in a dramatic and bold way. He publicly acknowledged that he had Parkinson’s Disease, informed a largely unaware public about how PD had affected his working life, and dedicated himself to spending more time with his family. Perhaps most dramatically, he took on the challenge of working towards a cure for PD within a decade. I have a tremendous respect for what he has done since “coming out” with Parkinson’s. Raising awareness of PD, establishing the MJF Foundation to fast-track research, lending his voice and support to the cause, and I’m sure sacrificing much of his personal and family life. For all of this and more he should be lauded.

In recent years, Fox has been making a gradual return to network television through guest appearances on programs such as Curb Your Enthusiasm, The Good Wife and Rescue Me. Now, in 2013, he returns with this new self-titled sitcom. I was so looking forward to seeing how PD would be presented in a respectful way but also infused with a good shot of humour. The pilot episode showed Fox had the ability to do this in spades. He is very talented and has a sharp wit. Regrettably, however, as the weeks have gone on, each show has featured less and less of this and more of the somewhat trite stories of odd characters ensconced in weak story lines. I don’t think I’ve laughed out loud since the 2nd episode. Fox is the clear star in this show – I hope he (and his PD) get to shine a little more brightly in the weeks ahead. If not, I fear there won’t be many weeks ahead.

And, perhaps it’s selfish, but as a person with PD, I’d like to see a little more of Michael dealing with the daily challenges of PD – at home, with the family, around town and at work. Not doing so presents a less than realistic view of life with PD and in a sense risks belittling PD symptoms and treatments. I know it’s a comedy, and some of these things can be less than comedic I suppose, but to ignore them does a disservice.

Finally, thanks to friends in Victoria and Chicago for sending me some links to what others are saying about the Michael J Fox show. Think you’ll find them of interest. If you find any more, send them my way and I’d be happy to add.

walking man walks


Originally published August 4, 2013

I’ve recently returned from almost a month in Europe with my family – our first trip to Europe (outside of Italy) and our first “major” trip since I began the pump. Planes and trains took us through seven countries and city travel was mostly confined to local public transport or our own ten feet (5 persons X 2). Being the considerate father I consider myself to be, I equipped everyone with new hiking boots a few months in advance of the trip to ensure they were well broken in. The best intentions, don’t always pay off. Suffice it to say, that not everyone met with success in this regard and the resulting journey has left an indelible imprint on our soles.

Yet, despite the relative support – or better lack thereof – provided by our chosen footwear, we marched on. Often times a weary lot, we soldiered through smoggy cities, pastoral country sides, bustling city cores, massive museums and back street art galleries. We strolled along canals, scaled steps to the top of church steeples and down to the depths of catacombs and crematoriums. We climbed hills and up four storey stairs to “flats” that we temporarily called home.

Walking is one thing when you are relatively unencumbered and free to meander to and fro. Perhaps graze in a meadow or explore a wooded area of a new found park. It’s quite another when you are carrying all your possessions on your back or in a sack or pulling a wheeled suitcase along a cobble-stone street. It’s also not quite as much fun when you are circumventing the circumference of a foreign city in search of an allusive train station while calculating how many minutes you have left before your train departs.

For someone with PD, walking is a double edged sword. On the one hand (or foot?!), I need to keep moving. If I sit or rest for any length of time, I stiffen-up. On the other, the more I walk, the more I tire. Yet, I must continue. I must push myself to walk more or face unwanted pain and rigidity. So, I walk. And walk. Not always briskly. Not always in a straight line. Not always without a shuffle, a limp or cramping. But I walk.
P.S. On September 7 2013, I’ll be taking a different walk. i’ll be walking to support Parkinson’s research – if you are able to sponsor me, please click here.

Keep your Requip, give me Photoshop


Originally published July 13, 2013

Drug therapy for Parkinson’s patients has no doubt met with a good deal of success in recent years. Participating in a clinical trial such as the one I am involved in is indeed a testament to this declaration (see Pump It Up, May 26 2013) . However, for all the advances, there are many days when I am all too aware of the ravages of Parkinson’s.
I get reminded when I take out my iphone.
I get reminded when I’m at the computer.
I get reminded when I look through a family photo album.

There, amongst photos of friends, family, both near and distant places, I receive jarring reminders of the physical effects of PD. Here’s one of me with a contorted limb. Here’s another where my flailing arms have been “caught” in mid-stream. As always, there is a bountiful supply of snaps where my face is twisted or misshapen in some strange position. This is a comment element faced by many Parkinson’s patients – the “Parkinson’s mask” – a “frozen face” that looks pained, emotionless, without expression especially when surrounded by a sea of glowing faces. Perhaps worse, is the forced smile that is vainly attempted to push its way through the Parkinson’s mask. I don’t know how many family photos I have ruined annually since I began this journey with PD! Mom happy, kids happy, Dad..?? what the f—- is wrong with him??!!

What we need is a simple solution to this. Prescriptions for Photoshop. Tutorials in PicMonkey. A photography “kit bag” that features adjustable limbs, insertable smiles. Rapid relief from that awkward forced PD smile. A healthy dose of Photoshop into our lives to ease the burden, ease the pain.

living with Parkinson's Disease…and more!