I turned 60 this summer and I have been reflecting back on my diagnosis of Parkinson’s 14 years ago (2005). I am deeply gratefully, that, at least for me, it is a mercifully slow progressing disease. The first 5 years I didn’t need any meds. I attended the 2010 World Congress in Glasgow Scotland as part of a work trip to N. Ireland. I had the honor of speaking 5 times at the 2013 PD World Congress in Montreal. When i decided to retire in May of 2014 it was because my voice quality was becoming unpredictable. (off 3 days a week but never sure which days) When a client re quested me for a keynote in October, I honestly to say no because I didn’t feel like i could deliver.
Bouncing along my merry way with the occasional stiff hours and scrambly voice, as Hannah calls it. Blessed to do just about anything others do: Drive a car, set up a trailer, ride a bike, kayak and even wash dishes – albeit some days slower. Life moves ahead with ever “in the moment” kids and persevering wife. As well as my love circles with family, Bedford United, Berwick, Parrsboro and friends I keep in touch with from bygone adventures.
Dark week. It’s not all roses. Mid August for some reason i was woken at 2am by an unusual leg tremor. (My version of PD presents as stiff, not a shaky) My meds didn’t seem to be working or if the did only for an hour per pill pop. Was I ready to face the new normal? Too much change. My mind started to drift into the future of “what ifs”, a very negative, anxious and arrogant game pretending I know the future. I worked thru it and got in to see my neuro team and I am back to “normal”. These incredible people in our health system. You won’t hear me complain. Opening my heart to those who love me got me thru this patch.
That dark week got me thinking about who’s there for me like Superwalk, Parkinson’s Canada’s main fund raiser for research, support and advocacy work. I means a lot to walk with my family. It’s a grand day more than symbolically journey around the public gardens with our community of hope and caring. I am supposed use this event to raise funds but I am notoriously shy about asking for money. There are so many worthy causes. But when you make a donation or even offer your moral support. It’s kind of like you’re walking beside me. And that would make my day.