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Wednesday, June 1, 2011


Hot. Humid. Hazy. A true summer's day. Thank goodness for the heat pump I had installed six years ago that has reduced our energy costs hugely and provided us with air conditioning on those days when it's just too hot to function. Yesterday was one of those days but, as it was the first such day of the year, our log house didn't have time to heat up and stayed cool all by itself, making it a haven from the furnace outside.

Michael is terribly heat-sensitive now, though he still seeks the sun.  I have to be very watchful  that he doesn't over-exert himself. That's difficult. With advanced Parkinson's disease, every single move he makes requires a Herculean effort, especially if his medications have run out. Every movement now can leave him sweating and raggedly labouring for air even without the added heat.

I managed to keep him in the cool most of the day yesterday, but as late afternoon approached, his most active time of the day, I did urge him to accompany me outside for a quiet stroll around the yard in the shade. I was busy inspecting a small grove of trees I've been thinning when I realized he'd disappeared.  Good grief, he can still be so quick and quiet at times.

Inside I found him in the cool basement  hunched over an ancient bicycle, bike helmet perched on his head. This poor old bike is past its glory days but it is still the one Michael gravitates to despite a fancy new thing purchased about eight years ago. Michael bought this old girl back in the 70's and has ridden, I would guess, thousands and thousands of kilometres on her. Old and faithful, this was the bike that transported Michael to and from work for years. He spent hours servicing and repairing this old ten speed, lovingly cleaning and touching her up over the years.

But Old Faithful has suffered at his hands too.  With creeping dementia, his focus has continued to dog this poor bike and has seen her painted haphazardly, stripped down and put back together in a fashion that will never see her on the roads again.  The seat has been removed, not a difficult thing to fix, unless you are Michael and have bent and distorted the appropriate hardware. All in all, she's only fit for tinkering now I'm sad to report.

So when I saw Michael with his helmet on and tire pump out to pump up the tires on this sad relic, I quietly announced supper was nearly ready, attempting to divert his fixed attention from what I guessed was an intention to hit the roads. The diversion lasted only throughout the meal, then back down into the basement he disappeared.  I followed him and babbled on about the danger of a bike ride right now, just as his meds were about to fail him, not that I have any intention of EVER allowing him out on his own again for a bike ride. No response from Michael, just dogged concentration.  I retreated upstairs to await the inevitable failure of the medication.

Minutes later, Michael is upstairs with helmet still on, now buckled under his chin. He rummages around in his room and emerges with a few pairs of soccer socks and his soccer cleats. Okay, it seems like we've shifted gears or now his intentions are becoming clearer. As he is lacing up his shoes I enquire about his plans.  Apparently he's going up to the soccer field on his bike to meet his friends to play soccer.  I remind him it's Tuesday, not Friday, the usual night for Old-Fart's soccer. Oh. Now what?

"Let's drive up to the soccer field just to have a look," I suggest, "and leave the bikes behind. It's too hot to cycle."

Okay. The soccer field is just a stone's throw away, a mere ten minute walk from our house, a shorter car or bike ride. On arrival he sees none of his cronies on the fields, just scads of children and their parents.  I wonder if he feels any nostalgia for the years of kids' soccer coaching he did with such dedication. My guess is that over those many years of gentle coaching, he probably met most of the community's children now between the ages of 20 and 28.

Soccer was a passion for Michael.  He came to it late in life, like most older Canadian-born adults in this country.  The first year there was a men's team here in our small town, back in 1994, he was out there willing to learn.

Michael was, still is, a natural athlete and could play almost any team sport. Though he loved his cycling and cross-country skiing, it was team sports that really fired him up.  He was a very skilled hockey goalie for decades, coming back to the sport in Canada as an older teenager after three years away in the American south where hockey didn't exist at the time. There instead he tried out for American football despite his tiny frame and short stature until he hit puberty at age sixteen and shot up into a tall but very skinny boy. Needless to say, he didn't make the cut, but his physical limitations didn't prevent him from trying out.  He has played basketball and baseball too, the latter with an adult men's team that spent as much time partying as they did playing.

Michael used to throw himself into any sport he played, a kind of take-no-prisoners approach. How he escaped serious injury all those years is a wonder. As a hockey goalie, you'd see him diving and falling for speeding pucks with an agility, even later in life, that bespoke skill and passion. I've often thought that he has been protected from serious injury in this latest athletic endeavour called Parkinson's disease by that former ease and skill that he displayed while flopping all over the ice through many decades of hockey. Michael has literally fallen thousands of times throughout this disease and has never had a serious injury beyond a slightly scraped knee or elbow. I believe that hockey, sports in general, was his best training for this disease.

But there might be a flip-side to the sports too. Recently there has been a frenzy of media attention on the dangers of repeated concussions, especially in sports like hockey and football. In those early days of hockey, Michael's protective headgear was nearly non-existent, and, though he has no memory of any serious dings to the head all those years, perhaps there were a few at least. Having no memory of them could be symptomatic of repeated concussions that would never have been recognized or treated as such.  Then there were a few whacks to the head during pick-up football games back in his youth, one sending him to the hospital with a nasty cut to the eye where his eyeglasses had shattered to bits. He was lucky not to lose the eye but there could also have been silent injury to the brain. But most dramatically was a blow to the head during his very first competitive game of soccer where he took an elbow to the skull and dropped like a sack of potatoes, unconscious. There were many more minor bangs to his head as he furiously but inexpertly headed the soccer ball. Knowing what I now know about repeated concussions, it is possible that these many blows to the head caused the neurological damage that led to Parkinson's disease, especially when I think that his disease manifested itself most aggressively right after that knockout blow to the head on the soccer field.  As was the case in sports until recently, he got back on his feet and carried right on playing, soldiering on.  Experts now tell us that is the worst thing to do after a concussion. Obviously, Parkinson's disease does not develop that quickly - he was already showing early signs of the disease - but I do think it was the proverbial icing on the cake.

In the end last night, there was no cycling, no soccer.  Diversionary tactics worked again. But once we were out in the car, I suggested a drive in our beloved Gatineau Park where we used to ski, swim, cycle, hike and picnic so much with the kids. There were dozens of cyclists out on the steep roads, some labouring heavily up the hills.  We drove slowly, carefully and wistfully past them all.


  1. Claire, I love reading what you have to write. It is sobering since I myself suffer from young onset PD, but informative and written like a pro writes. I mean that. I always look forward to your posts, because I know they will be human, thoughtful and intelligent. My best to you and Michael. -Bruce
    P.S. Sorry I haven't commented before, but I've been a pretty constant and faithful reader. And my meds and DBS together still don't always work optimally. No dementia yet, knock on wood. God bless!

  2. Yes - another great post. So vivid. I continue to keep you two in my thoughts and prayers.