Courage, Tenacity and Love Meet Parkinson's Disease
NOT “ESSENTIALLY SYMPTOM FREE”
On February 19, 2017 I wrote an essay “Parkinson’s Plasma Study Patient #1” in which I shared my enthusiasm for my recently completed young plasma study at Stanford. I wrote a follow-up essay, “Parsing Parkinson’s” on April 25, 2017. Of course, I’m not the only one interested in any long-term effects from the infusions. It is fairly easy to give an update. The hard part is untangling the multiple variables that have changed the course of my life in the last 2 ½ years. I doubt I can do that with any degree of accuracy.
Some people have gone so far as to claim I have “recovered” or I have experienced “systemic change” or that I am “essentially symptom-free”. That is not the case. My nausea is largely gone, but I experience a revolving door of symptoms like most other PD patients. For example, anxiety triggers dyskinesia and tremor. The only medicine I advocate unequivocally is Exercise, in particular, high cadence cycling (see pedalingforparkinsons.org). But all exercise helps physically, cognitively and emotionally, when I am able to do it.
In the past two and a half years I have faced several physical challenges. I severely injured my big toe joint, which was replaced in June 2017, preventing me from riding my bike for months. On a raft trip through the Grand Canyon one kneecap repeatedly dislocated resulting in arthroscopic surgery in the fall of 2017 and more months off the bike. During the summer of 2018 we attempted to hike around Mt. Blanc but I wasn’t fast enough to keep up with the guide, so I wasn’t allowed to hike …extremely disappointing. I was finally able to resume consistent biking (about 60 miles/week) in March 2019 but on June 1st my other kneecap dislocated completely and painfully. No biking again. Physical therapists are my best friends.
Many of the PD symptoms are still at bay. However, all is not perfect. My balance is compromised though I have yet to fall. I have little sense of smell. Dyskinesia is embarrassing. As with so many people with PD, my body stiffens painfully if I stay too long in one position. I couldn’t bear the thought of flying to Kyoto. I could go on, but I would rather focus on positives. A woman recently called from Ankara, Turkey to tell me she had just finished reading my book and felt she had to hear my voice! Instead of climbing mountains, I walk around the neighborhood. Constantly trying to restore strength to my body, I cycle for up to 30 minutes now rather than across Iowa. Goal setting is important each day, even though the goals are more modest. I still Dance for PD.
The Stanford study is now in Phase II with a different protocol developed by Alkahest. Since I have a-fib, I am taking Eliquis, which disqualifies me from participation in Phase II. Phase I results should be published by the end of 2019; Phase II results are due at the end of 2020. Until then, I have my story…up and down for 11 years. “Essentially symptom free?” I wish it were so.