I continue to feel really well now, almost three weeks after the last infusion. Oddly enough, II have developed some dyskinesia, which I didn't have before and my tremor has reappeared to some extent. I'm wondering if it's possible that I now have too much levadopa in my system, i.e., perhaps the infusions are changing my blood chemistry so that I am producing more levodopa on my own. I cut back one half of one 25/100 tablet and the dyskinesia eased up. Just a thought.

Nan,

I think you left out one (possibly important) piece of information. What happened with the tremor when you cut back the Sinemet?

Also, what exactly do you mean by "eased up"? Do you still have some dyskinesia?

If it was me, and I still had some dyskinesia, and the tremor hadn't gotten any worse, I would probably cut back a bit more.

Given your unique situation, we can expect that things will change again in the coming days and weeks, so you'll need to remain alert.

Jeff

Jeff, Your points are well taken. However, in order for the researchers to distill valid data, as many parameters as possible need to remain constant. For two days I experimented with the dosage and then decided my discomfort was less important than valid data so I went back to the Sinemet doses of 1 at 7, 10, 1 and 1/2 at 4 and 7.

The tremor only happens in a 10-15 minute time frame around pills at 4 and 7 p.m., and that's not always. That's generally true for the dyskinesia as well. When I was taking the full pill at 4 pm. the dyskinesia was very much in evidence. Now it is still there, but not nearly as noticeable.

Nan,

Thanks for the additional information. I think you've made the correct decisions.

Best wishes for the tests next week.

Jeff

Update. It has been 8 weeks since I started the Plasma study and four weeks since I had my last infusion. I expect it's possible that I'm experiencing the placebo effect, but I still have no nausea, etc. I'm weary in the late afternoons and I seldom get more than 6.5 hours of sleep, but I have energy for and interest in projects and the world around me. Dyskinesia and tremor have pretty well disappeared. Next week I return to Stanford for the final round of tests. So far, I'm a happy camper.

Check this out.

Old blood can be made young again and it might fight ageing | New Scientist

I think that this is extremely important for understanding PD and finding remedies for the multiple variations of the disease.
Researchers help map future of precision medicine in Parkinson's disease

Last Friday I finished my final testing for the Stanford Young Plasma Study, Phase I.

Although there were many tests, I have the numbers for the UPDRS. These numbers may reflect a placebo effect, but they are what they are.

I was tested both on and off medications in January before the first infusion; in mid-February after all eight infusions; and 5.5 weeks after the last infusion. Both on and off tests reflected a 50% drop in the UPDRS scores. The on medication test showed a continuing drop in score after the infusions were over, from 13 to 10 to 7. The off medication tests were 28, 14 and 14. As I have noted before, I feel very little effect from the Parkinson's since the infusions.

We also know that the forced pace cycling has made a tremendous difference in my disease progression. I'm wondering if the combination of the plasma and the cycling (and probably the placebo) is making a difference. At any rate, this appears to be going in the right direction.

All that said, we are talking about a sample of one, which is clearly more anecdotal than scientific. I'm eager too see what happens with the other participants in the study when the results are published in the next year or more.

I took part in another research study today, this one at the University of Washington. As part of the study I had UPDRS assessments both Off medication and On medication, the first such tests I've had since receiving the plasma infusions at Stanford in January and February. The section of the UPDRS that I have scores for is the Movement part, section 3. My Off medication score was three points lower than my initial Stanford assessment and my On medication score was three points higher than at Stanford. Of course the raters were different people and the scores are subjective, but I think we can safely say that my Parkinson's is closer to what it was before I started the infusions than when I ended them.

At first I felt sad. Then I took a closer look. I've had nearly 3 months of greatly reduced PD symptoms; the main annoying symptoms (nausea, constipation, anxiety, apathy, low energy, etc.) are still gone. I have a little dyskinesia and still have a really hard time in noisy spaces later in the evening, my sense of smell is disappearing again but still... none of us expected any positive outcomes to last beyond the actual infusions. What a fortunate woman I am!

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.