Parsing Parkinson's

APRIL 25, 2017 PARSING PARKINSON’S

Parkinson’s disease is characterized as a movement disorder identified by specific physical and cognitive characteristics. No biomarkers have been identified that determine whether or not a person has Parkinson’s. Often dementia-causing Lewy bodies are discovered in the brain at autopsy. Autopsy is not the most effective way to identify a disease.

After living with the PD diagnosis for nearly 10 years, I have a theory about Parkinson’s, and a suggestion about a research path to pursue. First, it is clear to me that Parkinson’s is a name for a group of diseases, much as “cancer “is the word that lumps multiple subsets of that disease. Cancer has breast, prostate, liver, pancreatic, skin, etc. etc., all forms of cancer with some common characteristics but differentiated by specifics and by treatment modalities. Similarly, the term “Parkinson’s” identifies a class of diseases, not a single entity that can be treated with one approach. It is no wonder that research trials consistently fail when they test a one size fits all application.

From my perspective, as one who lives with an iteration of the disease and who has many friends who live with various forms of it, I see manifestations as: tremor dominant and non-tremor dominant; early onset (before age 55) and normal onset (average age about 62); genetic and idiopathic, cognitively intact and cognitively challenged. Some people endure multiple physical challenges in walking, balance, bowel function, nausea, etc. Nearly everyone loses their sense of smell, ability to write normally and speed of movement and nearly everyone suffers from anxiety.

Treatments are all over the map. For over 50 years levodopa has been the gold standard drug. Deep Brain Stimulation (DBS) seems to be most effective for younger people with tremors. Dopamine Agonists, marijuana, “natural remedies”, and special diets each have their passionate followers. Exercise is the new medicine, especially high cadence cycling, but other exercises show promise as well and each has its following.

I think researchers will eventually catch on to the idea that one treatment won’t serve everyone, and the more they carry out large research studies without differentiating the PD population, the longer they are doomed to finding no single cause and no definitive cure or effective remediation of the diseases, because there IS no ONE disease; there are MANY.

This insight is the result of my very specific personal experience. Diagnosed in 2008, I learned about Forced Pace Cycling research done by neuroscientist Dr. Jay Alberts of the Cleveland Clinic. I signed up and by cycling far beyond his protocols, was able to effectively rid myself of the disease enough to enable me to ride my bike across Iowa six times, climb Mt. Kilimanjaro, and accomplish other unlikely feats for a woman in her late 60s. Despite my success with cycling, the disease continues its inexorable march through my body and mind.

In early 2017 I read about a Phase I study, the Stanford Parkinson’s Young Plasma Study, in which older PD patients would be infused with eight units of plasma taken from 18-25 year old males. This treatment idea was following up on research done with rats and Alzheimer’s patients that showed cognitive and motor improvements with such infusions. I immediately contacted the PI at Stanford and volunteered since my age, degree of deterioration, etc. fit the study parameters. At age 71 I became Patient #1, the first person in the world with Parkinson’s to undergo the young plasma treatment.

Phase I tests safety, not efficacy. However, the inevitable question on the table is whether or not this might work. Each week I flew back and forth to Stanford, receiving two infusions each trip. I had three extensive two day On and Off medication tests: before starting the infusions, at the end of the eight infusions and 5.5 weeks after the last infusion. My response was remarkable and unexpected. My UPDRS score in both On and Off testing was cut in half from the beginning to the 5.5 post-infusion week mark. Things that disappeared: dystonia, irritable bowel, constipation, gas, nausea, anxiety, weariness, apathy, need to nap. Things that returned: sense of smell, high energy, sleeping through the night, confidence. New things: dyskinesia (to a small extent), tremor (increased slightly). I wondered if the dyskinesia and tremor reflected too much dopamine in my system so, with the agreement of my doctor, I cut back my Sinemet from 4.5 tablets per day to 4.0. Both issues were somewhat, although not completely, resolved. Great!

What about the other people in the trial? There are to be 18 all together with testing ending by the end of 2017 and analysis finished by the end of 2018. In the meantime, I get no more plasma and no more testing to see how I’m doing. I keep records anyway and send them in to Stanford. One of the other women in the trial contacted me before she began the study. She has called me regularly to say how she’s doing and we actually met on my last visit to Palo Alto. Her report: nothing changed. How could that be?

Here’s where I go back to my original observation that there are many kinds of Parkinson’s that will call for various in treatments, and a further observation that treatments will most likely be effective when modalities are combined. The other patient doesn’t exercise and would not be considered fit. I exercise like a maniac. Dr. Alberts has shown that when people cycle as per his protocols, the same areas of the brain that are activated by medicine are activated by cycling. Cycling IS medicine. We know that medicine slows the progression of the disease but doesn’t stop it. Same for cycling. But WHAT IF?? WHAT IF?? medicine, cycling AND young blood infusions put us over the tipping point so that the disease is stopped, or even, as seems to be with my body, is reversed?

My last infusion was Valentine’s Day, 2017. More than two months later, despite some slipping, I’m still doing quite well. I feel I could do even better. The symptoms I got rid of slowly are sneaking back into the matrix. I’m told that Phase I will end in 2018, hopefully followed by Phases II and III and FDA approval. That will take at least 10 years, probably more. I’m 71. Do the math.

What would I like to see? There are over 30 Pedaling for Parkinson’s programs currently operating in the US, primarily at YMCAs, which could provide a prepared, eager resource of clinical trial participants who already take pill medicine and cycle medicine regularly. A new trial could reflect a subset of Parkinson’s patients whose inclusion criteria include medicine and cycling or other exercise that has a proven track record with PD patients. If it were successful, it would be a game changer in the world of Parkinson’s. If it weren’t successful, at least we would have some answers without waiting 10 years.

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  • NanCyclist thank you so much for sharing this in depth perspective of Parkinson's! It's so important to take into consideration the patient's point of view.

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