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12-06-2013, 10:04 PM | #1 | ||
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New Member
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Hi:
I am a new member to the forum. I have been "lurking" on the site for many years, but never had anything to contribute until now. My husband was diagnosed with Parkinson's 8 years age. Last week we went up to the NIH to get him evaluated to be part of the GDNF Trial that they are recruiting for. He went through Day 1 of the evaluation and was asked to stop his medications and come back for an "off" evaluation on Day 2. After going through all the physical trials on Day 2 in both the off and on state, they determined that he met the criteria to be accepted into the study. Not only was he accepted, but another fellow we met, also met the parameters they were looking for. The next hoop we need to jump through, is the blood test for the AAV2 antibody. If my husband has the antibody, he will not be able to participate in the study. In any case, they went over the study details with us and my husband and Dr. Heiss of the NIH both signed the consent. They also asked if we would like the speak to the only patient in the study who was dosed 8 months ago, saying he is quite willing to talk to future study participants. We are very excited to see where this all leads and am looking forward to sharing any information with the forum. Keeping our fingers crossed that he will be able to participate! |
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"Thanks for this!" says: | anagirl (12-07-2013), lab rat (12-08-2013), lindylanka (12-07-2013), lurkingforacure (12-07-2013), moondaughter (12-07-2013), olsen (12-06-2013), RLSmi (12-07-2013), shcg (12-15-2013), soccertese (12-07-2013), Stand Tall (12-07-2013), Tupelo3 (12-06-2013) |
12-06-2013, 11:11 PM | #2 | ||
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Member
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Best of luck to you and your husband
I just started a new drug trial for a growth factor this week as part of a group of three PD patients. However, no surgery involved in my trial. Yet, it's still scary but very exciting. I really hope he gets accepted and can go forward. Gary |
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12-07-2013, 07:39 AM | #3 | ||
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Magnate
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12-14-2013, 08:34 PM | #4 | |||
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Senior Member
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Anna Maria,
I am in the queue for this clinical trial as well. My surgery is tentatively scheduled for March 2014. Good luck to your husband! It is very nice to learn that others are interested in joining this trial! Best, Jean www.pdplan4life.com Quote:
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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"Thanks for this!" says: | Stand Tall (12-15-2013), Tupelo3 (12-14-2013) |
12-14-2013, 08:57 PM | #5 | |||
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Senior Member
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Soccertese - good points
I plan to keep a journal of my experiences in the trial. But I think it would be a bad idea for me to post comments "live" about how I think I'm doing. As you say, the placebo affect can be very strong, and I wouldn't want to inadvertently influence anyone else in the trial who might read some comment on line. So my journal will remain private until an appropriate time. Jean B Quote:
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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12-14-2013, 09:33 PM | #6 | ||
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Magnate
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12-15-2013, 10:14 AM | #7 | ||
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Jill |
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"Thanks for this!" says: | jeanb (12-15-2013), soccertese (12-15-2013) |
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