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.
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NanCyclist
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You're very inspiring, Nan. Thank you for the update and for sharing your story. As a native Iowan with PD, I enjoyed reading about your RAGBRAI experience and it has led me to exercise intensely on a stationary bike 3 times per week. I completely agree that exercise is our best medicine.
Hi Nan. You are an inspiration. I've been wanting to tell you I was in the Dr's office the other day & picked up a magazine and started reading a story and realized it was about you called "Live Life to the Fullest" & saw a picture of you & your husband. Great story!!
You've been an inspiration for many of us for a long time, Nan. I'm sorry to hear about your injuries, but I'm glad you've been able to get back to exercising. It's our best friend, no doubt about that!
I too have found exercise as the one thing that I can do that helps alleviate symptoms. I need the c/l to keep going through the day but the exercise is the thing that keeps my mind, body and soul really working. I have afib as well. In fact, that was my first symptom. I was a 6 time a week tennis player and had to give it up to the heart issues. I took up golf. When my other clearer PD symptoms came on, like right side tremor and stiffness, I kept golfing and fast walking. When I stop moving, I feel horrible.
I was wondering at what age you were diagnosed? And if you have ever been on any PD meds?
Thanks for your interesting reply, Palm Springs. I was diagnosed at age 62 and am now 73. I take 5 c/l 25/100. 12 mg ropinerole, 2 tabs of Eloquis and 1 amantadine to slow the dyskinesia. I take .75 mg of clonazepam at night to control REM sleep behavior, 2 amantadine pills gave me hallucinations, not so good. I bumble along pretty well. This morning my husband and I took two of our grandchildren on a bike ride across a 3+mile bridge, about a 7 mile ride total. My tendency is to overdo and then pay for it with sore joints. I still have hope.
Nan, thank you for the detail in your post. I read it with interest and wish you the best. The bottom line to date: exercise and activity alter symptoms and in so doing may alter the natural history of disease.
Trib Selyov
Ps: I completed the book of a financial anthropologist of sorts… At least in one lifetime… I thought of you as I was writing it. Day Trading with My Hebrew Uncle
Hi Nan, 2 a.m. and I was just reading your post as I find it comforting to know I'm not alone. I'm going in for surgery on my carpal tunnel syndrome in just over a week and I'm still dealing with a pulled groin muscle that has sidelined me from all my hiking and pretty much any other exercise accept short walks around the neighborhood and my aquatic exercise class. I am grateful for those.
I hope things are on an even keel for you and improving in this difficult journey we're on.
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