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Friday, December 18, 2009

Early days

It seems my once very good arithmetic skills have deteriorated or maybe it's just that I cannot fathom the enormity of the duration of this disease, how long it really has been. I was lying awake last night after yet another wake-up call from Michael (remember when our children were infants, waking up every two hours and how hard it was to return to sleep after several interruptions?)  thinking about 3000+ days and how long that felt. Wait a minute... 365 days x 15 years is 5475 days - way off base. Wow, now I'm really wide awake.

Michael was diagnosed with PD in 1994. I remember the lead up to that life-changing day. Michael had been alerting me to various odd symptoms over the many months preceding his diagnosis and in some cases seeking a doctor's opinion. One was a vague ache in the middle of his right front torso, just beneath the ribcage. This was a couple of years before D-day (diagnosis day) so not much else was manifesting at the time and the doctor dismissed it as nothing, as doctors are wont to do when they have no clue. We didn't worry about it any further.

But then Michael noticed that his handwriting was getting smaller and more difficult to produce. Michael had always been so proud of his beautiful handwriting especially after nearly failing grade 1 for illegible scribbles (Who fails grade 1 for poor handwriting?? I hope times have changed!). Then the weakness in his right arm and the stiffening up of that limb as well as the slight drag to his right leg.

To all of these things I was oblivious or dismissive. At the time we were homeschooling four kids and the youngest was only a toddler. I was consumed with very busy days and couldn't or wouldn't admit that there might be something wrong with my ever-strong husband. Michael had been promoted to a new job and was feeling the strain of that along with several months of mandatory French training which drained him. I put all his quiet complaints down to stress. That is until one day (and he has completely forgotten this) he fell to his knees at my feet in the middle of the kitchen and cried that he didn't want to die. I was bewildered, to say the least, having no idea the torment he had been experiencing.

Over the months preceding D-day, he had been quietly researching his symptoms and had narrowed his possible diseases down to three: Lou Gehrig's disease, MS and Parkinson's. I was still in denial and figured he had nothing more than a sports injury, something I had never been terribly sympathetic to, claiming they were all basically self-inflicted. I did have to stop and re-evaluate though when he returned from the GP one chilly day in November announcing he had an immediate consultation with a neurologist. As has always been our way, we discussed it very little and waited for that day. Michael did not want me to accompany him, so that morning I furiously threw myself into cleaning a friend's house, a friend who lost her own dear husband a few short months later to a brain tumour. Michael returned home at around noon, dropped the Parkinson's bomb, we both cried a few minutes and then he valiantly took himself back to the office. I was left feeling stunned and somewhat hurt that he just fled back to work, but I realize now that the last thing he needed was a serious watershed; he needed to carry on and immerse himself in denial, at least for the short-term.

I cried alone for a week, feeling sorry for my husband and myself. I'm not sure for whom I felt more sorry but I clearly remember having a serious chat with myself, urging myself to just get on with it. Tears are a good release but, for me at least, not healthy to indulge in for too long. So I set about carrying on with our busy lives and embarking on informing myself about this mysterious disease. As for Michael, he left me to the research and for his part carried on with work, sports and denial.

And denial is what carried us through those early years. It is a powerful support when appropriate. It allowed us in the short-term to gather our reserves for the next stage.


  1. This is where we are I think. I don't think of it as denial but rather in the today of things, because I just have no idea where this will go. And we (I) am hopeful about various treatment ideas. Is that the "early years" speaking?

  2. Yes but if you are just starting out in those early days, the treatments are much more finely tuned now and surgical options are much safer and accessible. Being in "the today of things" is probably how life will continue to be. It's a good way to approach this disease which is in constant flux. "One day at a time" is the title of a book published by the Ottawa Parkinson's Society and I think sums it up.