PD in Prime Time

NBC Promo

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.



http://truth-out.org/opinion/item/19381-parkinsons-and-disability-have-an-image-problem-and-michel-j-fox-isnt-helping

http://www.suntimes.com/lifestyles/22942028-423/what-someone-with-parkinsons-disease-thinks-of-new-michael-j-fox-show.html

Depression - The Prequel

I have been trying for some time to write about depression with Parkinson's. I must admit the subject has given me a fair degree of consternation.  Yet it's also reminded me of some "classic" favorites I'd reference for inspiration! Here's a clip from SCTV featuring Andrea Martin as Connie Franklin. So, while I continue to slog away at this piece on depression, thought you might enjoy this prequel of sorts. When she croons "I'm losing my hearing, I've lost sight in one eye...", think of me!

Walking Man Walks

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 (see Pump It Up, May 26/13). 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

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.

What if there is no cure?

Earlier this year, I had the opportunity to participate in an on-line forum(dubbed "Google Hangout") where I posed a question to Michael J. Fox and he, in turn answered (see Hangin' Out with Michael J Fox, April 28 2013). While both the question and his answer were more complex (or perhaps convoluted), in essence, I was challenging our societal response to illness. In this case, specifically to Parkinson's and the Michael J. Fox Foundation but I do think it can be extrapolated to other disease areas.

When I was first diagnosed with PD some 13 years ago, I was thrilled to see the almost simultaneously-incorporated Fox Foundation burst onto the fundraising scene with a fervent and determined proclomation to find a cure for PD within 10 years. They forged an organizational structure that would fast-track research efforts that showed promise, they built a succcessful team of fundraisers and a solid core group of philanthropic supporters. Research was, and continues to be, carried out in a broad spectrum and at a prolific rate.

Good stuff. No question. Yet, what I do find disconcerting is the 'drift' away from the original goals and the raison d'etre of the Foundation - to find a cure. There is more talk now of early diagnosis in order to improve treatment of PD - on drug therapies to alleviate the symptoms of PD - on coping strategies for living with PD. Again, all worthwhile pursuits but no longer the consequential cure.

I don't want to sound Pollyanna. I don't believe it is an easy task. I recognize that the Foundation has accomplished a great deal. I have donated to the Foundation and even run fundraisers on their behalf. Yet, I worry that the initial goals and challenges that were set out have been lost or corrupted along the way. Does the draw of the pharmaceutical industry dollar pervert the purpose? Does the Foundation become an institutionalized entity in the PD research community rather than a vehicle set up to bring about it's own demise through uncovering that cure? And what if there is no cure? 

I don't pretend to have the answers but, if anyone out there is taking a survey, put me down as one who still "wants a cure".

I'm a man, yes I am

In honour of Father's Day, I've decided to ruminate on what it means to be man with PD. How does Parkinson's affect my "maleness"...my "manliness"...my "manhood"? 

Hmm...on second thought, maybe I won't.

R.I.P.

One of the things I miss most from my pre-Parkinson days is a good night's sleep. I'm not talking about that alcohol-fuelled sleep brought on by a night of youthful revelry nor the spent exhaustion that followed an overly busy day of play as a child. Nor am I referring to the sleep that came to a weary body after a taxing day at the office followed by a night out for dinner and a show. What I am referring to is a "normal" 7 hours of restful sleep.

While it's been 13 years since I was officially diagnosed with Parkinson's, PD came to me some time beforehand. Years of a twitching baby finger, disturbances in sleep patterns, soreness in my extremities, and a fading sense of smell. All calling cards of a sort. It's hard to pinpoint exactly how and when PD came to rob me of my sleep but there's no use losing any sleep over it! I'm in bed with PD now and that won't change.

Through the years, I have experienced relative highs and lows. During my lowest period,  I went several years getting an average of 3 hours sleep a night (3 hours in total - not 3 hours uninterrupted). I have tried numerous pharmacological and naturopathic resolutions with varying degrees of success. At present, I am the best I've been in years. I take a low dose of Zopiclone (a sleeping pill) which pretty much ensures I will get 4-5 hrs of sleep that is mostly uninterrupted. I say mostly because, while I can pretty much count on some kind of interruption during the night (if not for the very vivid dreams I have, it'll be the dog barking at something in the dark, someone using the bathroom or a car passing on the street). Yet these interruptions are relatively short and I tend to fall back to sleep within 10-15 minutes.

Yet, as satisfied as I may sound with the current state of affairs in zzz-land, I know that not all is well that ends well. I find myself easy to tire and less patient then I ought to be. I am sometimes more testy or on edge than is warranted. And most often, it is those closest to me - myself and my family - that bear the brunt. A resolution? Think I'll have to sleep on that...