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.

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...

Pump It Up

how I get "pumped" every day 

I an earlier post, I wrote about my current treatment but several people have mentioned they missed it because it was "buried" in a longer post. For those who missed it, I've re-posted it this week.For those who have already read it, take the week off :). Or, if you are a real blog junkie, permit me to suggest where you might get your weekly fix - visit http://lilblume.blogspot.ca/. Lil  Blume, a friend of mine from my old radio days, does a great job with this - inspirational and thought provoking.

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.

the first few days of the clinical trial, 2011

what I'm wearing today, tomorrow and every day thereafter
the brown vest that holds my pump in place!

So what becomes of you, Mr. K?

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.

Hit the Road, Jack

Just got back from an extended weekend in Atlanta, Georgia  - a tiring but rewarding trip to be sure. The mirror shot above gives some indication of how I'm feeling after a whirlwind four days out of the country. Still, I appreciate the break. One thing I'm proud of over these past 10+ years is introducing my kids to the love of traveling. I know in their lives, they will have opportunities to see and do more than I ever will. In the past few years, I have felt an increasing urgency to spend time with them, as well as with family and friends, in places near and far from home. I want to be able to walk the streets of cities and lands while I am still mobile and, though traveling has been more complicated by PD, I have been undeterred to date. I hope this continues. 

Now, I'm conscious that this isn't a travelogue but a blog. Permit me, however, to share a few pictures of some of these trips not only to highlight where we've been but let you see how much they've grown!. More to follow as we have Europe on the docket this year! 

California, 2008

Seattle, 2008

Nova Scotia, 2009

Chicago, 2010

Italy, 2010

NYC, 2011

NYC, 2012

Hangin' Out with Michael J Fox

One advantage of having more time is it gives me a chance to do things like this - i "hung out" on-line with Michael J Fox a week or so ago. Here's a link to the conversation (and they even posed a question from me which I had submitted prior to the program - comes up at around 10:45 of the video). Wish I had the opportunity for a retort though!

I remember when I was first diagnosed with PD (basically around the same time he went public with his), I wrote to Michael J Fox to tell him that, despite what I thought of his acting career (I never cared much for any of his shows/characters), I appreciated what he was trying to do for PD. While he clearly has more resources as a movie/tv personality, it is still admirable to see the level of activity he takes on given his condition. When I have bad days, the most activism you might be able to coax out of me is hitting the"Like" button on Facebook!

reelin' in the years

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. 

  

Tess, Emma and Will circa 2004 and 2011

Sisters and brothers, yes. But very much becoming their own persons! From this past year, here's a few pics of them (in order, Tess with friends from Victoria College residence; Emma promoting her Me to We volunteer work; Will plugged in and on the go!

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 :)