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Old 05-18-2011, 05:31 PM
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
Default can you tell us more?

Quote:
Originally Posted by lurkingforacure View Post
But I sure wish everyone else who had been helped would pipe up as well. Seems like they just had one or two guys with ambiguous, to us, claims of improvement posted on their site. Maybe the company can get registered and approved to continue operations and then others can go if they can and want to. Patient choice, informed consent, I'm all for that.
I think that would really help too lurking; Decogal, i don't think anyone thinks this is a bad thing - this clinic - but I do wonder if they did what needed to be done to prove it's safe and it works. When you say 38% improvement, that doesn't tell us what he now can do that he couldn't before. How was the 38% noted in his functioning or his psychology. we all are hoping you are right, but we don't have any evidence. The problem with numbers is that they don't tell you enough and they can be manipulated.

I could probably score 38% better on a test on a good day "on" compared to being off. Can you tell us more?

I'm torn between understanding that this clinic is trying to help people and i have advanced pd and fight all the time for speeding up treatments, but even the researchers here say IPS cells are not of therapeutc value yet. So if you see the improvement in your husband and he feels better I'm very happy for you both. is there more you can describe about his improvement?

are they providing follow up? or were they before being closed?
the best way to get a treatment going is to share what it did to your husband. Convince us and then we'll be hopeful that maybe this is just a regulation problem.

best to you,
__________________
paula

"Time is not neutral for those who have pd or for those who will get it."
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"Thanks for this!" says:
VICTORIALOU (05-19-2011)