You've got to suffer if you want to sing the blues

Over ten years ago, I met a man just a few years older than me, living north of the city and also struggling with Parkinson's Disease. Besides PD, we didn't have a lot in common - Nelson is a former championship weight lifter and an extreme mountain biker. He is also a blues harp player and while I can't play an instrument, I share his passion for music.  While distance restricts our get togethers, over the years we have managed to keep in touch, share updates, and lighten each others load from time to time. We even manage to get in a few hotly-contested rounds of golf as weather and health permits! This past year, as I tried to reassert somewhat dormant writing skills through this blog, my friend has taken to writing, and subsequently publishing, a book that documents his struggles against "the darkness" of PD. In its 100+ pages, Nelson recounts the challenges he has faced, the losses he has suffered and the victories he has achieved. Late last month, I went to his book launch and was pleased to see the reception he received and the pride he has in his work. Here is an excerpt from his book Shaking Hands (Titan Press, 2013).

For centuries people have had to deal with the justification for going to war. Some of the premises that man has accepted as validating a decision to enter conflict have been as follows: the presence of an evil force or entity; the threat or act of someone or something denying another his freedom or health and well-being; a threat to another's loved ones; and finally the threat of inflicting physical, mental or emotional harm.

These are the conditions on which we who are confronted by The Darkness exist. Some people passively accept things as they are and continue on as best they can and resign themselves to the outcomes of their situation. I have never been able to accept domination or defeat without kicking, biting and clawing my way out from under the shroud of darkness that can envelop us.

The preconditions for war that we have lived by throughout eternity all exist for those of us attacked by this disease.

Parkinson's is a truly evil entity/force as it ravages your body and slows and dulls your mind. Our freedom, health and well-being are all subjected to takeover by whatever condition it leaves you in. It threatens the bonds that unite loved ones by making you withdraw and abstain from contact with those who care for you, thereby inflicting pain on them.

Finally, physical, mental and emotional degradation are The Darkness's main outcomes, once it infests your body and your mind. So you see we are truly at war within ourselves, from moment to moment, as we try to outlast the onslaught of evil.

We who suffer from this battle have to realize a very important premise:  there can be no ultimate victory against evil at the moment. Nothing short of a revolutionary turn in focus around the world toward disease will give us hope. Ponder this: how many diseases have been cured or mostly controlled in the last hundred years? Even better, the last twenty-five years? The reality is that in the last century, we have discovered and produced a vaccine for polio, virtually eliminating this threat, as well as smallpox and diphtheria and nothing else.

We evolve physically and mentally over the generations, so why do we not evolve medically? I believe the answer is simple: the pharamaceutical machine cannot abide by cures for diseases being the focus, as this is basically a one-run game, and then the disease is no more and the pharma giants cease to profit.

I don't believe I am paranoid or delusional thinking that pharmaceutical companies have it in their best interests to be able to produce ongoing, profit-making treatments and not cures. much like the oil cartel, they are vested in ongoing profit and nothing short of a global inversion will change that or keep them from obstructing the search for cures.

Michael J. Fox had the right idea when he started his foundation, aiming for a cure. But even his personally vested good intentions cannot overcome the power of the giants who will not permit a real solution to exist. So I respond to those who might question my premise of 'waging war' with The Darkness.

The Darkness is much more than an individual evil. It is the power of greed and control which, on the big scale, challenges us to adapt, worldly, a new mindset, which in time can overcome the profit objective and seek cures for what ails us. Thus, daily, I wage my own personal war, knowing ultimately I can't win, but resolved to milk each moment for positives to hold back the evil cloud.

Excerpt and cover image reprinted with permission of the author.

If you are interested in ordering a copy of Nelson Sleno's book Shaking Hands, please visit his website at www.shakinghands.ca

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.