On the Catwalk

"I'm too sexy for my shirt" declared Right Said Fred.

I'm a model. 
You know what I mean?
and I do my little turn 
on the catwalk.

But I ply my craft far from the runways of Paris, Milan or New York. 

My steps are less bold, more gingerly taken.

Cocky ambivalence is not how one might describe my demeanor though ambivalent, apathetic, angry might all come to mind with this facial “mask” I wear.

Yes, I’m a model. But not a model in the high powered, celebrated and opulent fashion industry . No, I’m a model in the highly underrated, sometimes banal, not-for-profit parenthood industry. I’m a Dad to my three kids. A parent for some 20+ years now. Not such a unique job but an important one in our community.

To a greater or less extent, and for better or worse, our children look to us as a model throughout their lives. As my Parkinson’s Disease has progressed, I find my behaviours, my thoughts and my actions are increasingly thrust under the microscope of self–scrutiny. 

I have often thought about how my children see me as a “stay-at-home” father and how that contrasts with my previous employment as a teacher and social service administrator. How has this shaped their model of what the working world looks like? Has this in some way diminished my role and/or contributions?

When I am feeling tired or weakened (which, unfortunately is all too often these days) I am challenged to behave or speak in ways that one would consider to be 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 PD “filter” or simply find ways to cope and persevere through such times? Or do I fall into the trap of using this as an excuse for such behaviour?

As my ability to carry out daily activities becomes more limited, and constraints are imposed on more vigorous family activities such as entertainment and leisure pursuits, do they see me as not contributing to healthy family life? Can they sense the angst it creates to not be able to do such things that once meant so much to me?

On the other hand, having a parent that is disabled presents them with a wonderful opportunity. Disability, illness, suffering, perseverance - as well as gratitude, commitment, and love - these are all very much a part of this thing we call "life". What better way to model these characteristics than to live with them each day?

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

Swimming

I haven't posted anything to this blog in almost a year 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.

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.