Courage, Tenacity and Love Meet Parkinson's Disease
FEBRUARY 19, 2017 PARKINSON'S PLASMA STUDY PATIENTt #1
My last plasma infusion of the Stanford Parkinson’s Plasma Study is doing its thing in my body. As Parkinson’s Plasma Patient #1, I finished eight infusions of young blood plasma, the first human with Parkinson’s in the world to do so. I feel like Harrison Ford stepping off the ledge in Raiders of the Lost Ark, only Harrison knew the prop was there to keep him from falling into the abyss. I don’t.
Recently, I read my essay on My Life in Three Hour Segments, written just 1.5 months ago, and was flabbergasted to realize how my life has changed in that short interval. I checked my daily Excel chart to see if this could be real. Although I am often aware of the time to take my Sinemet, it no longer drives my day. I’m sure I would forget it in the morning unless my watch vibrated. I still try to cycle in the morning but I’ve found that walking or other exercises also produce results. I have a Dance for PD home video, which I enjoy when I can’t go to class. I quilted a bedspread for my grandson and a wall hanging for my friend in Palo Alto. I shoveled mulch from the back of the pickup. When the airplane lost an engine (there were only two) on the way home from Palo Alto, I comforted the woman next to me rather than being overwhelmed with anxiety. No nausea. Seldom monitor what I eat. I have a little wine many days, enjoying the aroma as much as the wine. I’m sleeping an average of eight hours each night, up from the pitiable four or five that has been the norm, and taking few naps. Bobbing, weaving and head dipping are memories. No cramps. I still have gas. After a couple of hours, my hiking pace slows, but I AM 71 years old. Most people do not suspect I have Parkinson’s disease, certainly not for nine years. Could all of this be a mirage, a multi-faceted placebo effect?
Which brings me to consider what is going on here. If it is not a placebo, if this young blood plasma in fact reverses the clock, proves to be a fountain of youth, what does that portend, physically, ethically and personally? Immediate concrete questions. What dose and how to determine the dose? If the theory is that young plasma counteracts effects of aging, how old do the recipients need to be to make it meaningful? Would a person with early onset PD who was diagnosed at age 30 derive any benefit from plasma from 18-25 year olds? Or would this therapy be limited to people with aged blood, patients who were diagnosed closer to the normal average of 62 years? We know that Parkinson’s is a designer disease, with different iterations for nearly everyone. Will this infusion process just work for people who mimic my demographic or should there be hope that it may apply to a greater swath of the affected population? What biomarker would indicate that this treatment is warranted?
Ethics. Globally there are an estimated 6 million or more people with Parkinson’s. If plasma infusions work, how should the limited amount of available plasma be allocated? Could pharmaceutical companies create a generic “young plasma” that could be made available at a reasonable cost? Would they or would this be a therapy for the rich?
What will happen to me now that the infusions are over? Is there any reason to expect that I have reached a sustainable tipping point in which the benefits will continue without the addition of new plasma or am I starting back down the slippery slope of increasingly debilitating symptoms? Would a supplement once a week or once a month or once a (name the timeframe) enable this to continue working? I would like to think so, but this is all unknown territory until I and the other participants experience whatever we’re going to experience and the numbers are crunched. I would hope that the people who structured the study have a plan to help us sustain benefits, but the harsh reality is we are lab rats and I, for one, am committed to following the protocols, no matter where they lead. That said, the idea of going back to where I started last January is painful. Whatever happens, nothing can take away the joy of these few essentially disease free weeks.