NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/)
-   -   The Stanford Parkinson's Disease Plasma Study (SPDP) (https://www.neurotalk.org/parkinson-s-disease/242357-stanford-parkinsons-disease-plasma-study-spdp.html)

badboy99 11-26-2016 01:50 PM

The Stanford Parkinson's Disease Plasma Study (SPDP)
 
The Stanford Parkinson's Disease Plasma Study (SPDP)

The Stanford Parkinson's Disease Plasma Study - Full Text View - ClinicalTrials.gov

zanpar321 11-26-2016 04:44 PM

Quote:

Originally Posted by badboy99 (Post 1229695)

Hi Badboy,

With 99% of alpha synuclein contained in the red blood cells that leaves 1% contained in the plasma. Correspondingly, since this study involves only transplanted plasma, I doubt if this study will show significant changes to PD symptoms but I could be wrong. I'm glad they're doing this study though as the young blood may invigorate cells in other ways which might improve symptoms!

anagirl 11-26-2016 09:57 PM

Thanks for posting this Badboy. I just emailed them...I live about 20 minutes from Stanford and this study sounds interesting.

I see that the age cut off is 50 though - I'm 46. Not sure if they will take any exceptions but we'll see!

badboy99 11-27-2016 11:34 AM

Quote:

Originally Posted by anagirl (Post 1229710)
Thanks for posting this Badboy. I just emailed them...I live about 20 minutes from Stanford and this study sounds interesting.

I see that the age cut off is 50 though - I'm 46. Not sure if they will take any exceptions but we'll see!

anagirl, Let me know what they say regarding age cutoff and the start date for the study. Also, if the phase 1 people will get a crack at phase 2.

anagirl 11-27-2016 11:46 PM

Quote:

Originally Posted by badboy99 (Post 1229736)
anagirl, Let me know what they say regarding age cutoff and the start date for the study. Also, if the phase 1 people will get a crack at phase 2.


I definitely will!

Nan Cyclist 12-09-2016 11:33 AM

Inclusion
 
Quote:

Originally Posted by anagirl (Post 1229766)
I definitely will!

I have been accepted for the trial and will begin in January. i was told that if the outcomes merit it, our infusions will be extended for another 4 weeks with travel expenses paid. They are not paid for the initial trial. I am 71.

Anagirl, would you like to meet while I'm there?

anagirl 12-09-2016 07:33 PM

Quote:

Originally Posted by Nan Cyclist (Post 1230723)
I have been accepted for the trial and will begin in January. i was told that if the outcomes merit it, our infusions will be extended for another 4 weeks with travel expenses paid. They are not paid for the initial trial. I am 71.

Anagirl, would you like to meet while I'm there?

I would love to meet with you, Nan! I will private message you my phone number and email address.

I still have not heard back from Stanford regarding the study. I guess I just missed it by 3 and half years.

Nan Cyclist 01-13-2017 01:39 PM

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.

zanpar321 01-13-2017 01:52 PM

Quote:

Originally Posted by Nan Cyclist (Post 1233618)
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.

That's awesome Nan. If I was closer to Stanford I'd participate. Please let us know how it goes! Tim

lurkingforacure 01-15-2017 11:35 AM

Trial underway for Alz.
 
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).


All times are GMT -5. The time now is 11:58 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.