1. < Parkinson's Disease

My wife has Parkinson’s disease. Can she participate in a research?

Posted by jameswright @jameswright, Dec 19, 2023

Is there a Mayo number to call for my wife(has Parkinson’s) to participate in a research study for stem cell therapy?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

jaybee51 | @jaybee51 | Dec 14, 2024
In reply to @tsch "He had spinal tap and skin punch but was not told results. He had some kind..." + (show)
@tsch

He had spinal tap and skin punch but was not told results. He had some kind of scan, not sure of DAT type. He does not have PD as far as we know, though he has some precurser symptoms. He is a five year participant.

Jump to this post

Thanks for your reply. I dropped out before the spinal tap and 21 months later was diagnosed with PD (in Nov). I was having difficulty getting my results from PPMI but last night on their site, I found a way to view my results. I found a section that said if you want your results to click the link, ‘view your research information now’. Even if you agreed not to see your results or were assigned to the group that can’t see their results for two years, you can change your mind any time. I wish I had been told that as I would have started treatment 21 months ago if I had known the results.

REPLY
2 replies
sillyblone | @sillyblone | Dec 15, 2024
In reply to @stephencbabcock "www.trialsearch.com There is also a: www.clinicaltrials.gov You could even contact known Medical Institutions, ie. Cleveland, Mayo,..." + (show)
@stephencbabcock

http://www.trialsearch.com
There is also a:
http://www.clinicaltrials.gov

You could even contact known Medical Institutions, ie. Cleveland, Mayo, and inquire if certain departments are interested, funding is everything. (Or contact drug producers (manufacturers) on what they are working on).

Perseverance is 50% of survival. The medical world is rapidly changing, Search, search. & Search! Don't give up the fight!!

Jump to this post

I agree. I have learned that just a visit to the neurologist for my spouse is not going to be enough. Researching and finding ways to make his life a better life is my extra way of showing that their is hope. I know he loves me and understands me alot better than when physicians and ancillary staff that speak to him. I guess you can say I decipher what was said and what it means! Hugs to everyone fealing with this condition we call "Parkinsons ".

REPLY
tsch | @tsch | Dec 15, 2024
In reply to @jaybee51 "Thanks for your reply. I dropped out before the spinal tap and 21 months later was..." + (show)
@jaybee51

Thanks for your reply. I dropped out before the spinal tap and 21 months later was diagnosed with PD (in Nov). I was having difficulty getting my results from PPMI but last night on their site, I found a way to view my results. I found a section that said if you want your results to click the link, ‘view your research information now’. Even if you agreed not to see your results or were assigned to the group that can’t see their results for two years, you can change your mind any time. I wish I had been told that as I would have started treatment 21 months ago if I had known the results.

Jump to this post

Thanks for this. My husband tried to do what you said, but ran into snags, possibly not his fault. Told to try again later.

REPLY
tsch | @tsch | Dec 15, 2024
In reply to @jaybee51 "Thanks for your reply. I dropped out before the spinal tap and 21 months later was..." + (show)
@jaybee51

Thanks for your reply. I dropped out before the spinal tap and 21 months later was diagnosed with PD (in Nov). I was having difficulty getting my results from PPMI but last night on their site, I found a way to view my results. I found a section that said if you want your results to click the link, ‘view your research information now’. Even if you agreed not to see your results or were assigned to the group that can’t see their results for two years, you can change your mind any time. I wish I had been told that as I would have started treatment 21 months ago if I had known the results.

Jump to this post

I was able to get to his results. Thanks.

REPLY
tsch | @tsch | Dec 16, 2024
In reply to @jaybee51 "Great! Did they help any?" + (show)
@jaybee51

Great! Did they help any?

Jump to this post

Well, yes and no. Tests positive, but how will unfold not known. No symptoms at present. Did you have symptoms when you joined PPMI?

REPLY
jaybee51 | @jaybee51 | Dec 16, 2024

Yes, I had quite a few PD symptoms when I joined. I went to a neurologist for an assessment but she said I didn’t have PD. I suspect I did and 3 years later she said I did. The assessments are too subjective; we need a better diagnostic test!

REPLY
View MoreView Less
Please sign in or register to post a reply.