Courage, Tenacity and Love Meet Parkinson's Disease
July 3, 2017 Unexpected Experiment
(Written 7/3/17. Updated 9/3/18
Following protocols established by Dr. Jay Alberts from the Cleveland Clinic, since 2009 I have been riding my bicycle between 1-3 hours for 3-5 days per week, trying to keep the rpms between 80-90. Like many people with Parkinson’s who exercise regularly and intensely, my disease has progressed very slowly, so much so that, nearly 10 years after diagnosis, many people are amazed to learn I have this affliction. The only times I took significant breaks from the cycling were when I climbed mountains: Kilimanjaro in 2011, Annapurna Base Camp in 2012, Machu Picchu in 2013, etc. On many road trips I have been able to take my bike along and set it up on a trainer in a campground or beside a river, thereby maintaining my fitness level and continuing to keep the PD beast at bay. To what do I attribute the slow progression? Is it the cycling? Is it my type of Parkinson’s? I choose to think that cycling is a major part of it although I understand that I am fortunate to have a slowly progressing variant. Certainly, the young plasma I’ve written about elsewhere must be factored in to recent changes as well.
In May and June of 2017, however, I had to take a forced break from cycling. My painfully arthritic toe needed more than cortisone, but I was unwilling to spend the months it would take to repair the hallux rigidus in the joint at the base of the big toe. When I heard about a new (to the USA) technique in which the doctor cleans out the arthritic mess and inserts a spacer in the joint to keep bone from rubbing on bone, I signed up. However, for 1.5 weeks prior to my June 5 surgery, we traveled to the east coast and, although we carved out two opportunities for me to cycle at a YMCA, I went nearly four weeks without cycling. What a great opportunity to isolate cycling as a factor in my Parkinson’s.
Each day I didn’t cycle my body became more stiff, joints cracked, flexibility was severely restricted, energy was way down, I needed more and longer naps, I snacked more without gaining weight, and my sleep time dropped nearly an hour. I shuffled with my back bent over and curled to the right. I felt slower in thinking and behavior. Part of this undoubtedly was due to the fact that post-surgery I had to sit with my toes higher than my nose for 1.5 weeks. No wonder my body was frozen!
My conclusion: Cycling makes a big difference. The benefits from the young plasma infusions continue to hold steady. Non-motor improvements in anxiety, constipation and apathy are foremost among them. I returned to the bike May 17, building up my body and mind. Not everyone will have an opportunity to try the young plasma treatment, but my experience verifies again that intense exercise is key to slowing the progression of Parkinson’s. A minor ache in the toe and a pretty scar are all I have to remind me of the pain I had before surgery.
In August 2017 we floated the Colorado through the Grand Canyon for two weeks. My left knee or kneecap dislocated numerous times for no apparent reason. One day it went out 7 times…painfully. I had surgery on that as soon as we returned to Seattle. Although I went through the PT exercises regularly, the knee and toe joints continued to be quite painful. After a year the doctor explained that there was more degradation of the base bone than would be expected and I might need another surgery for the toe, but we would try cortisone first. I had the shot a month ago and the pain left. My fingers are crossed.