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.
Stanford Plasma Study: Tomorrow I fly to... - Cure Parkinson's
Stanford Plasma Study
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NanCyclist
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Good luck, my thoughts go with you.
Good for you, you brave woman! Just remember, you are doing it for all of us.
Interesting. Could you give a bit more detail, like the name of the study?
It's the Stanford Plasma Study. clinicaltrials.gov/ct2/show...
Thank you. Please keep us informed as to how we can help you and the research.
I applaud you for being heroic. You have offered yourself to them as a human subject. Yours is the best sort of spirit that there is to be found in this world. I pray for your treatment to do no harm.
If you change your mind though, just change your account name here and come on back. We will know its you from the style and content of your posts but no worries. We will still respect that you once had the courage to consider risking your health to further medical science. 
Thanks for your positive thoughts. This has already been used with Alzheimer patients and there is no negative effect. I'll write back with my own name.
is it still open
I believe it is although I know many people have expressed their interest.
clinicaltrials.gov/ct2/show...
The Stanford Parkinson's Disease Plasma Study (SPDP)
This study is currently recruiting participants.
Note the eligibility requirements set forth at the linked page.
Of course. Levity...good cheer is the best of healers. You recognize my style. Enjoy the adventure.
Praying for you!! Thanks for your willingness to help!!
Buzz said: "If you change your mind though, just change your account name here and come on back..."
That's ridiculous!
Nan, if you change your mind either before or once you've started you can tell us and we'll not think any the worse of you. We're all balancing pros and cons for various medications/treatments and I'm sure there are many here who are on trials, both for altruistic reasons but often because we're hoping for some benefit ourselves.
I'm currently on a trial for Deferiprone a drug that strips iron from the brain. And looking forward to a lumbar puncture on Friday! Not.
You do whatever feels right for you first and foremost - and if you keep with the trial: bravo! - and thanks from everyone here. x
I think I have had five LPs. Not so bad. Thanks to you too!
Do they think that you have too much iron in the brain?
This has nothing to do with iron. Check out the TED talk on the Stanford Plasma Study. Although it was given in 2015, it is the basis for this study.
Much luck & many prayers. You're a hero! You'll be fine, hopefully as good as new. Let us know how it goes and...thank you!
Thank you for sharing your journey with all of us, I am sending you so many good thoughts and prayers, look forward to hearing how this goes for you as it can potentially affect all of us. Thank you so much
Ooh - this is interesting and exciting! I hope it goes really well. Thanks for being the first - you are truly courageous!
Good luck, our thoughts and hopes go with you.
Those doctors at Stanford are some of the best in the world. You are in good hands. Thanks you for being the first one to try out this treatment. I wish you the best! May you pave a new path for the rest of us to follow behind for a better life for all of us.
Good luck - I hope it works
Safe travels with this, Nan. Lots of us pulling for you. Here's to being back in the saddle soon.... Cheers.
Hey Nan... VERY interesting study and a fascinating approach to addressing the migratory nature of this progressive disorder. Very bold of you to jump into the Phase1 stage of trials so I commend you and wish you the absolute best possible outcome (I also hope researchers don't impose a restriction on your ability to share an occasional progress report with comrades in arms I'm sure you're thoroughly versed in the potential benefits of participation so I've used the link you provided above to summarize key points for others:
“Treatments to date have largely focused on dopamine replacement strategies or deep brain stimulation, both symptomatic treatments.
“As neurodegenerative diseases progress, there are major changes throughout the body and brain. These changes are transmitted in the body via the circulatory system between organs, tissues and cells. Recent findings from multiple laboratories have shown that infusions of young plasma into aging rodents can have beneficial effects on cognitive functions. This suggests that the circulating components of plasma can improve cognitive and disease-relevant symptoms
“The established safety of blood transfusions allows the investigators to test whether infusions of young plasma can ease the neurological symptoms in human subjects with neurodegenerative diseases. To date, this has been well-tolerated by the participants, without major adverse effects.
“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.”
[Now recruiting]
I'd do that.
Thanks for writing all of that. When I read it I thought "Go for it. "
Sounds fascinating and potentially very exciting.Does anyone know whether there are any similar trials in the UK?
Thank you for letting us know what you are doing tomorrow. It's really interesting that you will be the first PD patient in the world to do it. Tomorrow will be a special day--I'll be thinking about you the next 6 weeks--in fact, I am going to put this on my calendar so I don't forget you are having the transfusions. I hope you will still be able to do your regular cycling exercising too.
Always cycling!
Good luck.Hope it works out for you.Please tell us how you get on and what's involved with the procedure.
Thanks for all of us God bless and good luck you are a true Champion 👍
All the best and thank you. May things go well.
Good luck - fingers crossed!
Keep good notes.
" if I can climb Mount Kilimanjaro, surely I can fly to Stanford"
Sounds like a good follow up
All the best
Great comment!
Good luck Nan
Best wishes! Your a hero!
Thank you for doing this! Wishing you the best of outcomes.
Great, good luck. Thank you for participating and look forward to reading updates.
Good luck
very interesting, good luck and keep us posted.
You hang in there Nan. I will continue to follow you with great interest and concern.
You have my best regards. John K. fellow Parkinson's Person and RAGBRAI 'er.
Thank you for offering your body for the benefit of all of us. Look forward to favorable results. God bless.
Who is the plasma from? Human? They using whole plasma. What are they looking for, the markers, what is the end point?
People like you make the world go around. Thank you and to all like you
Sorry it took so long to reply. The plasma is from males age 18 to 25. They are checking to see if I improve or if the 18 of us who are receiving the plasma improve in both motor and cognitive aspects of our disease. There are no controls in the study. All 18 of us are getting the plasma. The initial study will probably not be finished until December and then they'll see about having a phase 2 study and a phase 3 study if warranted. Nothing happens too quickly in this world!
Hope it helps!!!
Good luck!!!
The whole world is watching and praying for you. Thank-you from all of us. You are very much admired and appreciated. God bless!
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.
Anybody hear from Nan?
My reply is posted on this thread. In a few hours I'm off for the second transfusion. I feel like I'm a professional cyclist who is blood doping! (Not really.)
Update as promised.
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.
There was a Ted talk given on this very research in 2015. Here's the link. ted talk stanford plasma study
How did your trans fusion go? Did it work? I would like to participate. I've left several messages.
I have had the first two of eight transfusions. I posted reports on this thread so scroll through until you find them please. We are cautiously optimistic but won't have final tests until mid-March. I'll continue to report as the I go through the program. I know that they have had over 50 applicants for the 18 spots. However, keep yourself in good shape through exercise so you'll be ready if they do a Phase II.
good luck.... Please keep us informed
good luck Nan, enjoy the weather down there
I have just arrived in Palo Alto for transfusions number three and four. I had the most interesting experience a few days ago. I opened a jar of basil in my spice cupboard and I was overwhelmed with the aroma. I haven't smelled anything for years. Or I have smelled very very little unless it was an overpowering odor. But this was clear as a bell. I stood there at the spice cabinet opening Jar after jar, sniffing with a tear in my eye. I wonder what will be next. I feel like my body is standing in front of an old-fashioned telephone operator with the person pulling plugs in and out, making random changes to my perceptions.
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 snce I could savor the bouquet of wine. I nearly wept. (I drank every drop!)
Transfusion #4 tomorrow.
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.
How exciting! Thanks for sharing your experiences with us.
I'm back at Stanford for numbers five and six. The thing that I noticed most this week is the amount of energy that I have. I just keep going and going. Like the bunny. We had a lot of snow in Seattle this past week and I spent hours shoveling and enjoying every minute, even though I was tired at the end of the exercise. I also bicycled for an hour after shoveling the snow. I feel years younger.
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.
Hi, NanCyclist, a time ago, we've heard something about you ......
How are you doing ?? How is it with the Plasma-Study ???
They don’t give out information to the participants so I don’t know. how it’s going for the others. I had surgery on my big toe joint and my knee, which took me off m y fast cycling for about 6 months. Neither body part has completely recovered so I don’t think that my assessments are quite accurate. They originally said we would have results by the end of 2018. I wish it were sooner. I would love more infusions. I am currently at Johns Hopkins doing another bio-marker study. They tell me that I am a most unusual, remarkable pup, able to do more than their other patients and progressing very slowly. I don’t know if that is. at all related to t he plasma.
thanks for asking.
Thxs for being lead dog on the plasma study. Please keep us informed.
FYI, every 2 wks I take NAC and Myers Cocktail infusions...
I haven’t heard from them for a year. What are these infusions you refer to and what are they doing for you?
I was just thinking about you and wondering how you are feeling. Is your energy still good?
Thanks for asking. My energy is not as good as it was. That said, next week we start on an 11 day hike around Mont Blanc, 110 miles. I’ve been a little dubious, but as each day goes by, I feel stronger and more confident, or at least, eager to try.
Best of luck! That's quite a challenge.
I am mimicing two Phase 3 Mass Gen PD national Trials: Inosine and NAC. For inosine, I take 800mg daily. For NAC , I also take 800mg daily plus an NAC infusion every two weeks.
The Myers Cocktail is used by althletes to rejuvenate after intensive competition; I do infusions of this concotion every two weeks.
FYI, I am 74. Early PD symptoms started 5-6 yrs ago, but were dismissed as old aging. Definitive PD dx via DATScan a little over 2 yrs ago. Been exercising for a couple of decades, but have turned up the volume (fast walking, resistance training and rowing). Also have deep tissue massage and Feldenkrais sessions twice a month.
Hope this is useful.
Wow, thank you Nan for sharing your story! The same young plasma treatment used by Stanford is now available in Texas to Parkinson's patients.
Anyone who is interested, please send me a message directly for more information!
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