Woman from a stem cell trial featured in a short video

I do not know the trial or about this news source but I happened upon this video,found it uplifting, and think maybe others will too.

youtu.be/9qq0WRdHct4(Not working as expected?)

[kevowpd]

clinicaltrials.gov/ct2/show...

Probably^?

[Bolt_Upright in reply to kevowpd]

Yep, that has to be the one: Principal Investigator: Mya Schiess, MD The University of Texas Health Science Center, Houston

[Bolt_Upright in reply to kevowpd]

Allogeneic Bone Marrow-Derived Mesenchymal Stem Cell Therapy for Idiopathic Parkinson's Disease

[jimcaster]

Thanks for sharing this. It's very encouraging to see such positive results in an actual human being. It is also a little bit frustrating to wonder how many more years it will take for this to be readily available. I understand that we need to monitor people for long term consequences, but time is not on our side.

[jimcaster]

This video is from 5 years ago, but it gives some insights into Dr. Schiess' approach.

youtu.be/PqVj-Axdh5I(Not working as expected?)

[Canddy]

Hi cc - I tried to get into this stem cell trial last year but sadly I was disqualified due to concomitant inflammatory arthritis. Glad to see there are some positive results.

[Hidden in reply to Canddy]

Canddy, have you researched how your arthritis is related to PD? Is it autoimmune like rheumatoid arthritis?

[Canddy in reply to Hidden]

The docs aren't really sure what is causing disfigurement of my right hand - it looks like rheumatoid arthritis, but it doesn't "walk and talk" like rheumatoid arthritis. My hand disfigurement may be due to Parkinson's disease (as some patients with PD have hands that look like RA) and it does get more flexible with dopamine but the confounding factor is that the arthritis also responds to hydroxychloroquine. Before I was diagnosed with PD they put me on hydroxychloroquine and I no longer had pain in my hand or knees or other joints. I tried to go off of hydroxychloroquine a couple of years ago and I was in agony so back on it I went. This was all going on BEFORE my PD diagnosis in 2017. My inflammation markers have been normal to slightly elevated and I have no joint erosions. Long story short = the docs don't know what is causing my arthritis but feel it has an inflammatory component but it is not RA so they are happy to give me hydroxychloroquine for the arthritis and Sinemet for the PD.

[Canddy]

of note my hand has been disfigured since 2014; my left hand is slowly going the way of my right but very slowly.

[Hidden]

Rewatching this because the prospect of this in the future is uplifting. Hoping it can lift up others as well.

[JAS9]

This is an update on that "Doc vs Parkinson's" clinical trial that's being run by Mass General. Some of this info is from their site, but the interesting bits are from a 'source' with some inside knowledge. I don't mean to be mysterious, but I don't think he'd appreciate being contacted by mobs of people. If you have a question, I'll try to get answers.

The first (human) subject continues to show improvements: "Two years after the surgery, imaging tests indicate that the transplanted cells are alive and functioning correctly as dopaminergic neurons in the brain. Because the implanted cells originated from the patient, they did not trigger an immune response and were not rejected without the use of an immunosuppressant drug."

About four years have now passed since the surgery, and the subject continues to improve "every day". His only regret is that he "only" had 5 million stem cells implanted. The new clinical trial (which should begin "soon") will evidently implant 25 million. Don't hold me to this, but I believe this is the plan.

The second trial will involve 10 more subjects (who have already been selected) and approval is expected within months (not years). The team has had to work through some issues involving the quality of the iPSCs for the trial, but they firmly believe that these have all been dealt with. They resubmitted their proposal and now they wait.

If that trial goes well, they plan on a third human trial and may need more subjects (according to my 'source'). However, they won't know any details of this third study until the second (hopefully soon-to-begin) study has shown some positive results.

The team behind these trials has some confidence, given the results from the first trial, but they definitely do NOT want to over-promise or raise expectations too high. "We have a lot of work to do" is the general attitude.

So, everyone should be aware that these trials are happening but temper that hope with the reality that everything has to be 'FDA perfect'. On the other hand, these trials are being pushed along as quickly as possible since funding is apparently not an issue. Much of the funding is coming from a wealthy doctor/inventor, who was the subject of the first clinical trial. He's dedicated himself and his significant resources to helping as many PwP as he can. He knows first-hand how hard PD can hit, and he volunteered for - and funded - the first trial.