It is that time of year again – Parkinson Canada SuperWalk is upon us on September 8. Another year has passed; there is still no cure for Parkinson’s, and I still have Parkinson’s. Oh well, maybe it was too much to ask that anything should change for the better.
Having said that, I believe that new therapies and approaches to the treatment of Parkinson’s e.g., physiotherapy, Pilates, intense exercise, dance for Persons with Parkinson’s, boxing, vigorous gardening, and the careful management of a raft of pharmaceuticals designed to alleviate the worst of Parkinson’s symptoms, have made my life with Parkinson’s more manageable and enabling me to have a better quality of life than persons with Parkinson’s (PwP) could expect to have in the past.
However, I am afraid that some people are interpreting this little bit of optimism to mean that we are winning the battle with Parkinson’s. I was once told when I was newly diagnosed that all PwP need is vigorous exercise and rigorous dietary regimes. Don’t be fooled. While some new changes are positive indeed, make no mistake about it, my life is not a bed of roses. When I am “on” my ability to function is better than it has been for a long time, but when I am “off” the Bradykinesia (slowness), freezing, balance issues, dyskinesia (a side effect of levodopa medication) and the ability to perform even the most simple of everyday tasks is more diminished than ever before. In other words, it is a good news/bad news scenario where the highs are higher and the lows are lower. It is somewhat disheartening to know that Parkinson’s continues its relentless advance but I prefer to keep the bright side in front of me and stay active physically and mentally.
As always, Anne, my wife and lover, is my rock and keeps me on an even keel when Parkie wants me to list precariously and stagger drunken-like across enormous open spaces with no grab bars. All the while Anne miraculously maintains the appearance of a quiet artist, quilter, knitter, advocate, and health professional who knows and sees all on matters relevant to our lives.
If you are a PwP or a family member, you will realize very quickly that no matter how well prepared or how well equipped you are with the latest devices, literature, and aids as a PwP or as a family member, there is still an urgent need for research, support, education, and advocacy for those living with Parkinson’s as its character and course is ever changing. Just when you think you have it figured out, it throws you a curve ball – maybe a new symptom or a change in the severity of an old one.
That is why my team, Team PD Gardener, is participating once again in Parkinson Canada SuperWalk. We know first hand that the over 100,000 Canadians living with Parkinson’s and their families (another 400,000) are affected daily by a disease that is so much more than a tremor. The list of symptoms is very long. There is no cure. There is no way to stop its advance. But we cannot give up hope. We cannot give up doing the work that needs to be done to enhance the quality of life for all those affected by Parkinson’s.
Please support Team PD Gardener in this year’s Parkinson Canada SuperWalk so that we can succeed in our struggle to defeat Parkinson’s.
Click here to make your donation:
Stan Marshall aka The PD Gardener
© The PD Gardener (Stan Marshall) 2018