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Old 11-24-2013, 03:31 PM
lurkingforacure lurkingforacure is offline
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Join Date: Feb 2008
Posts: 1,485
15 yr Member
lurkingforacure lurkingforacure is offline
Senior Member
 
Join Date: Feb 2008
Posts: 1,485
15 yr Member
Default Hope all goes well

Quote:
Originally Posted by girija View Post
I have checked out practically every option that is available for me (10 years of PD, rigid-dominant, responsive to L-dopa, mild/no cognitive deficiencies and depression) for almost an year and finally decided to go for DBS.

From my point of view, there are several promising therapies are being developed, as you have discussed here. But nothing is ready for me right now. Here is a summary of my analyses of whats out there (within 2-3 years).

1. GDNF gene therapy (NIH) produces fairly low levels of GDNF in vivo (based on my calculations of converting gene therapeutics to protein values which may not make sense to anyone but me).

2. Vaccines for PD: Two of them going into Phase 1, both targeted to alpha-syn. I would think, an antibody binding to alpha-syn in the brain or a mechanism generating regulatory T cells would need to be coupled with anti-inflammatory strategies. That may be a part of clinical design, but I donot know that at t his time.

3. Stem cells: Most promising in my opinion. Patients are already selected for phase 1 and their cells are growing in culture. So will have to wait till phase 1 is done, and results are out. another 2 years at minimum.

4. fetal cells: same story as above. Honestly, I would go for stemcells rather t han fetal cells.

SO whats left if I want immediate relief is DBS. Many people who had DBS told me "you would know when you are ready". I am at that stage right now. My surgery is scheduled for next week. I am going in for DBS knowing very well that it is not a cure, has its limitations (speech for example). My hope is to be able to move and live without muscle rigidity and dystonia. I might have to keep my mouth shut in order to move.....which may not be a bad idea!!

Girija
Wishing you all the best with your DBS, and thank you for sharing you insight into therapy offerings, your insight means a lot to us, lfac
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"Thanks for this!" says:
girija (12-01-2013)