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01-21-2017, 09:01 PM | #11 | ||
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This isn't actually an answer Lurking, but the Parkinson's trial is based on the results they are getting in the Alzheimer's trial.
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"Thanks for this!" says: | lurkingforacure (01-22-2017) |
01-24-2017, 08:33 PM | #12 | ||
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Tomorrow I fly to Palo Alto to have my first two plasma transfusions, the first given to a PD patient in the world I’m told. I don’t know how long it may take to see if there is any response to the plasma. The results in mice and people with Alzheimer’s has been positive. The next 6 transfusions will be given two per week, then more tests and probably more tests. I feel a little jittery.
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01-25-2017, 09:34 PM | #13 | ||
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The first transfusion is history. I feel much the same as I did before, but I'm certain there must be cumulative effects for any differences to show. I'll be tested March 14-15 and that will likely give us some verifiable information. I feel a bit emotional about the potential ramifications of this trial. But cautious optimism is the word of the day.
Over 50 people have contacted Stanford about participation in the trial. It will take a while for them to get to every person. If you are one of those interested, please contact Amaris again and note your connection with me. Of course she cannot share your names with me, but she would like to know if there is a connection. If you wish. Thanks to everyone for your tremendous support. |
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"Thanks for this!" says: | badboy99 (01-26-2017), Betsy859 (02-01-2017), Bogusia (01-27-2017), eds195 (01-25-2017), lab rat (01-26-2017), lurkingforacure (01-26-2017), ScottSuff (02-07-2017), soccertese (01-27-2017), Tupelo3 (01-25-2017), zanpar321 (01-26-2017) |
01-27-2017, 02:09 PM | #14 | ||
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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 | #15 | ||
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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 | #16 | ||
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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 | #17 | ||
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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 | #18 | ||
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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 | #19 | ||
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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 | #20 | ||
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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) |
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