originally published Sunday, April 21, 2013
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. Sisters and brothers, yes. But very much becoming their own persons!
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 🙂
Parkinson’s takes hold
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.
My drug of choice
Don’t get me wrong – I’m grateful for all the scientific advancement in the treatment of Parkinson’s, but one of the best therapies for me continues to be keeping a sense of humour about it all for as long as I possibly can. I say a sense of humour because sometimes my humour can be kinda dark and perhaps not always appreciated (or just out and out not funny!). And I say try (or at least imply try) to keep a sense of humour because sometimes things like dystonia just aren’t that funny at all!
Yet, in the face of mounting advancement of PD, keeping a sense of humour is increasingly challenging. Discouragement, loneliness, depression and social isolation have, to one degree or another, all been a part of my life of late with these advances. I need to make a concerted effort to get exercise, to connect with friends and family, to pursue outside interests and get engaged in projects or activities where I feel I am making a contribution to the community. The best example of this was undertaking the collection of archival material, and the subsequent celebration of the 33 1/3 year anniversary of Hamilton’s community radio station CFMU 93.3 at McMaster University. For 18 months prior to the celebration in May 2011, I connected with many people from those early days of the radio station to collect material from that era and assembled a 3 disc package and program book that was released on the anniversary. The project was a labour of love and the opportunity to reconnect with so many friends and colleagues from that time was wonderful.
Yet, when the anniversary was over, it left to a certain degree, a void in my life that hasn’t yet been filled. I’ve taken on a few volunteer activities, done some work around the house, helped out with some of our kid’s activities and taken the opportunity to travel as much as I am able. Still, I need to be involved in activities where I can have a better sense of contributing to the community.
Next time ’round I’ll be writing more about that (and more!). Until then,
All good things,