I finished testing yesterday. Whereas they don't give out scores for individuals, while on medication I was close to No Parkinson's. Off meds I was also substantially improved, consistent with my personal observations.
It seems to that this therapy may work to some degree for some patients with PD, but not all.
That may be disappointing but it's another step forward for research to rule out plasma infusion as a cure, yet know it is in the arsenal bag filled with effective adjuncts.
We have 2 cats, Chloe and Buddy. They defend the home from spiders and flying insects.
Dachshunds are fearless, ferocious defenders. Do you follow the adventure pics of Harlow and Sage on FB?
I have wondered if I should be donating blood. If you have muscle relaxers, possible hallucinagens, anti virals, anti anxiety, sleeping aids and now Cannabis in my blood.
I would check with the blood bank.
I have, they say that being a Parkie is fine. When I tell them my meds and then they want to know how much and when. I don't mind the intimate questions such as,"have you had sex for money?" but med taking is so personal.
That's an interesting take on medicines. I just think of them as a means to an end, not something personal.
Sorry, that is my humor. I am only funny once in awhile. Swing and a miss.😣
HAL
Money and net worth is personal, sex and meds don't seem to be. But, can we believe all of the stories when people talk about their sex or meds?
Hi Nan, Pls elaborate on "substantially improved" i.e., decreased tremor, more energy, sharper mind, etc?
All of the above. In every category they test and in my own personal observations. Even the Parkinson's mask. is not there to frighten my granddaughter. I have cut back on. my sine met 1/2 tab (1 since the beginning of the study) and have no more dyskinesia. Almost no tremor. I repeat, not everyone should expect, nor will they have the same results. I exercise like a mad dog, eat well, and have a lot of personal pluses, like family etc. We are all different and our PD presents differently. This is hopeful for sure, but not likely a blanket cure.
It has been nearly two months since I had my last plasma infusion and I'm happy to report that the benefits continue. In addition, I have an astonishing amount of energy and interest in doing things. I've quilted four pieces, taken long bike rides (20 miles), and can contribute sensibly to discussions.
That is a wonderful bit of good news.
I'm glad.
I took part in another research study today, April 10, 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!
You betcha!
it did not work for me made my condition worse i would not recommend
Thanks for adding your experience.
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