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01-13-2017, 01:39 PM | #1 | ||
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Here is a report on the Stanford plasma study so far. I went down to San Jose on 8 January and returned on the 10th. The ninth and 10th were all the opening days of the study. I am patient number one. They are looking for 18. I am told that age is not as important as other issues, so if you are interested, please inquire.
The first day I did all of the testing on my medication. The testing was both kinesthic and cognitive, including all the usual UPDRS, MOCA, walking up and down pathways with sensors attached all over, etc., nothing difficult at all, pretty familiar stuff. The next day was off medication and that was a whole other story. I finally realized how to describe being off medication. It's like that Chinese finger puzzle where you stick your fingers in and pull and the harder you pull, the more it contracts and the more it hurts. This is like having your whole body in the Chinese puzzle for about two hours. I have never been off of medication for an extended period of time, a new experience for me. That said, it was nothing that I couldn't tolerate and I could go ahead and do all the tasks they were asking me to do without a whole lot of difficulty. I go back to Stanford again on January 25 and 26th for the first two transfusions of blood plasma. I am certainly curious to see if anything happens because of it. We are in very new territory here but the people I'm working with are all first rate and I feel confident I am in excellent hands. I want to encourage everyone who can possibly participate to sign up for this research Trial. At least call and find out what the parameters are and do your best to get in. If this works, it could be life-changing for many of us. As with all research, it is fraught with unknowns. There are certainly no guarantees that it will work but if you participate you are moving the ball down the road and helping all of us. The pain is real, but at least it is short. Last edited by Nan Cyclist; 01-13-2017 at 01:43 PM. Reason: Misspelling |
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01-13-2017, 01:52 PM | #2 | ||
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Quote:
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01-15-2017, 11:35 AM | #3 | ||
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Does anyone know how the trial they are already doing for Alz. is going? From the clinicaltrial.gov link for this:
A study that is ongoing at Stanford, in the department of Neurology and Neurological Sciences, is testing whether infusions of young plasma can ameliorate the cognitive impairment in patients with Alzheimer's disease (ClinicalTrials.gov identifier NCT02256306). |
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01-21-2017, 09:01 PM | #4 | ||
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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 | #5 | ||
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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 | #6 | ||
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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 | #7 | ||
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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 | #8 | ||
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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) |
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