Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 02-04-2017, 05:29 PM #21
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

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.
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
badboy99 (02-04-2017), Betsy859 (02-05-2017), eds195 (02-05-2017), zanpar321 (02-04-2017)

advertisement
Old 02-04-2017, 09:07 PM #22
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
Default

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
jeffreyn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Nan Cyclist (02-06-2017), zanpar321 (02-05-2017)
Old 02-06-2017, 12:27 AM #23
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

I think it will also be important for me to get as much information about my end of study tests as possible. My information to this point is obviously all anecdotal. I am also eager to see the results of the Alzheimer's study.
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
jeffreyn (02-06-2017)
Old 02-06-2017, 05:27 AM #24
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
10 yr Member
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
10 yr Member
Default

Thanks Nan for your updates.

Clearly, there is a lot more work to be done to show whether "young blood" therapy works. But, more and more I'm interested in how quickly a new therapy can get into common usage. Am I right in assuming that the "young blood" therapy is as low tech as it sounds and has no patents, so if it was found to be efficacious it could be delivered cheaply at your local hospital?

John
__________________
Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
johnt is offline   Reply With QuoteReply With Quote
Old 02-06-2017, 04:05 PM #25
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

I'm sorry I don't have answers to your questions, but they would be the right ones to ask if the treatment proves to be efficacious. I think it would be sad if people started self-dosing before knowing answers to all the usual study questions. They are extremely cautious at Stanford, in a good way.
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Betsy859 (02-07-2017), johnt (02-06-2017)
Old 02-08-2017, 09:11 AM #26
Doug84 Doug84 is offline
New Member
 
Join Date: Feb 2017
Posts: 5
5 yr Member
Doug84 Doug84 is offline
New Member
 
Join Date: Feb 2017
Posts: 5
5 yr Member
Default

theguardian ** science 2015 aug 04 can-we-reverse-ageing-process-young-blood-older-people

an excellent article on young plasma.
Doug84 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Betsy859 (02-09-2017), eds195 (02-08-2017), jeffreyn (02-10-2017)
Old 02-10-2017, 09:18 AM #27
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

More anecdotes. Transfusions five and six are in the books and I'm at the airport in Portland instead of in Seattle back in my own bed. Last night we flew from Reno to supposedly Seattle but we lost an engine and JH landed in Portland. The notable thing related to the study is that I felt no anxiety when normally I would be going through the ceiling under those circumstances. Other than getting no sleep last night, I'm feeling really pretty good. My muscles are loose, my neck is fully rotational, not cracking and I generally feel I'm just pretty healthy. Time to board the plane.
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
anagirl (02-10-2017), badboy99 (02-10-2017), Betsy859 (02-14-2017), eds195 (02-10-2017), jeffreyn (02-10-2017)
Old 02-13-2017, 02:56 PM #28
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

I'm at Stanford having my 7th infusion as I type. After two days of transfusions the rubber will meet the road as I go through the on and off tests Wed and Thurs like I did at the beginning of the study. Then, another month to wait for the last go round of tests. Other than still being very weary from spending a night in the airport last week, I feel amazingly fine.
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
anagirl (02-13-2017), badboy99 (02-14-2017), Betsy859 (02-14-2017), Doug84 (02-14-2017), eds195 (02-13-2017), ScottSuff (02-13-2017)
Old 02-19-2017, 04:21 PM #29
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

I'm finished with my infusions at Stanford and have taken the first two batteries of tests that signal the end of the study for me. I take the last tests in mid-March and then wait for possibly two yeas to hear the results. As this is a Phase 1 study, there is a LOOOONG way to go. To facilitate communicating with many people, I wrote essays on my experiences, before and after the infusions, and posted them on my website: nanlittle.com. Please feel free to ask questions.
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
anagirl (02-20-2017), Betsy859 (02-27-2017), eds195 (02-19-2017), jeffreyn (02-19-2017), ScottSuff (02-19-2017)
Old 03-01-2017, 10:44 AM #30
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Nan Cyclist Nan Cyclist is offline
Member
 
Join Date: Feb 2010
Posts: 458
10 yr Member
Default

The last infusion was on Valentine's Day, how appropriate, and the interim report is that I continue to feel well, with very few of my PD symptoms in evidence. It's not that they are completely gone, just much reduced. How much of this is the placebo effect remains to be seen. Whatever it is, I'll take it.
Nan Cyclist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
badboy99 (03-02-2017), eds195 (03-01-2017), ScottSuff (03-01-2017), soccertese (03-03-2017)
Reply

Tags
disease, plasma, spdp, stanford, study

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Oral Inosine Persistently Elevates Plasma antioxidant capacity in Parkinson's disease badboy99 Parkinson's Disease 0 01-26-2016 09:33 AM
Prospective study of plasma urate and risk of Parkinson disease in men and women badboy99 Parkinson's Disease 0 01-14-2016 11:02 AM
Statins, plasma cholesterol, and risk of Parkinson's disease: A prospective study. olsen Parkinson's Disease 10 02-20-2015 05:47 PM
Stanford doctors treat Parkinson's disease patients with life-changing technology badboy99 Parkinson's Disease 0 07-09-2014 10:09 AM
Stanford scientists create neurons with symptoms of Parkinson's disease from patient' imark3000 Parkinson's Disease 0 03-05-2011 10:23 PM


All times are GMT -5. The time now is 05:07 AM.

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.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.