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01-27-2017, 02:09 PM | #1 | ||
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I finished my second transfusion at Stanford yesterday and came home last night. I'm making a careful record of changes that I notice in myself, but we know that the real test will be when I am examined by the doctors at Stanford after all eight transfusions are finished. That will be in late February and my final exam will be in mid-March. I realize that there is a strong possibility of the placebo effect going on here, because I so very much want this to work. That said, the things that I notice the most are the lack of weariness and I have almost no off time prior to taking my medicine, which is a real treat. My very slight dyskinesia has pretty much disappeared and I noticed when I got up in the night that my balance was perfect. I am so curious as to whether these things continue or not. There is no nausea, a welcome relief. I just finished my hour bike ride and I actually went beyond the hour. I moved the bike into the next highest gear, making it harder to pedal, but had no trouble keeping up my pace at the 80- to 90 RPM for the hour.
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01-28-2017, 09:46 AM | #2 | ||
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ted talk stanford plasma study Check this out. The talk was given in 2015 but it's what this is about.
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"Thanks for this!" says: | zanpar321 (01-30-2017) |
02-02-2017, 03:05 PM | #3 | ||
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A couple of days ago I opened a jar of basil in my cupboard, and I could smell it! This is the first time I've smelled anything for years unless it had an overwhelming odor. I stood in front of my spice cabinet opening jar after jar sniffing with my nose and wiping tears from my eyes. Every day has its random surprises. I just arrived in Palo Alto for transfusions three and four. I wonder what's next!
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02-03-2017, 12:20 AM | #4 | ||
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Third transfusion today..
We had wine with dinner tonight and I could barely bring myself to drink it. I just sat there smelling it. It has probably been 20-25 years since I could savor the bouquet of wine. I nearly wept. |
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02-03-2017, 08:00 AM | #5 | ||
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Nan,
You have climbed mountains. You have ridden miles - across Iowa - 80 rpm in one place. You walked across the stage Sunday, not bending to Parkinson's and told us of plasma. You share the spices that bring tears, the bouquet of wine after so many years. A gentle smile, a determination to press forward and help us remember we are all in this together. Thank you, Doug |
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"Thanks for this!" says: | Nan Cyclist (02-04-2017) |
02-03-2017, 08:29 AM | #6 | ||
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Nan,
I had a phone interview. Seeing your smile as you walked across the stage at Sunday's conference in Tacoma prompted my contacting Stanford. Did the phone interview yesterday. Now waiting. Thanks for sharing - especially the spice tears. Doug |
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"Thanks for this!" says: | Nan Cyclist (02-04-2017) |
02-03-2017, 10:08 AM | #7 | ||
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We're so excited for you Nan and hope your notice even more improvements in the coming months! I posted awhile ago that maybe a blood cleaning machine could be built that cleared out the alpha synuclein or whatever is producing Parkinson's. I hope this study gives more answers! Sure enjoy reading the posts Nan.
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"Thanks for this!" says: | Lana (02-06-2017) |
02-04-2017, 05:29 PM | #8 | ||
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As you all know, I am participating in the Stanford Parkinson’s Plasma Study. There is so much interest in this that the researchers and I do not want to raise expectations unrealistically. This is a Phase I feasibility study, not anywhere close to ready for prime time. They have all the applicants needed and a full waiting list.
This is what they are doing: “The investigator proposes to test the safety and efficacy of transfusing young plasma into PD participants, in order to establish its effects on motor and cognitive functions in participants in a Phase 1 study. The successful completion of this study will inform the design of future, larger and multicenter studies with the goal to determine whether infusions of young plasma can ameliorate the neurodegenerative symptoms and underlying pathophysiology in Parkinson's disease.” Realistically, this study will take a long time. They have to test and analyze the data, then write up their findings. Then, if warranted, they will move to a Phase II study, and then Phase III. So, whereas this is truly exciting, general applications for the public are not just around the corner. It’s not time to hold your breath. However, I will continue to provide updates. Transfusions 3 and 4 went as before, only a little more efficient, which we all decided was appropriate since #3 was on Groundhog Day. Just like the movie, we do it over and over. Other than being exceedingly tired, probably from sitting still most of the day at the hospital and at airports, nothing seems different today so far. Thanks for so much support. |
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02-04-2017, 09:07 PM | #9 | ||
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Hi Nan,
It's good that you've put things in perspective and reminded us all that a (possible) new treatment based on young plasma is still years away. It's understandable though that a lot of us are very excited to hear about the effects that young plasma may be having on you. Another significant milestone will be the publication of the results of the (soon to be completed?) Alzheimer's plasma study. Jeff |
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"Thanks for this!" says: | Nan Cyclist (02-06-2017), zanpar321 (02-05-2017) |
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