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08-06-2008, 02:14 PM | #1 | |||
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I just got a call from a research assistant at Sun Health. It's time for my annual "POSTCEP" clinical trial visit - and oh by the way they are looking for a person in my family who is not related to me by blood, and who does NOT have PD... Would such a person be available to participate in a clinical trial as well?!
I'm thinking that pretty much describes my husband . So Mark checked his work schedule for Monday & he has agreed to take the afternoon off to participate in this trial. It's all part of trying to identify biomarkers for PD.
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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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08-06-2008, 07:20 PM | #2 | ||
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Please share what biomarkers they look for, if you can, and dont' mind. We are very curious. Thanks!
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08-07-2008, 02:10 AM | #3 | |||
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I will ask - and will post anything I learn!
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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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08-08-2008, 10:27 AM | #4 | |||
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Lurking,
I asked - and they will draw blood, give my husband the "sniff test" that I always have to take, and ask for his medical history. Heaven knows they have enough blood from me (somewhere) so they can compare and look for differences between us. We've been married for 36 years now and except for a 14-month tour of duty to Korea and various other Army assignments, we've been together, at the same locations. I am all for doing what I can to add to the knowledge base. And my husband wants to help too. That's a good thing.
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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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08-12-2008, 12:11 AM | #5 | |||
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Lurking
today we went in for the trial. My doctor said they will look at my husband's background ( and 5 vials of blood) and compare it with mine. She didn't have a lot of specifics, but she did say they would look at alpha synuclein and some genetic factors jean
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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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08-12-2008, 07:12 AM | #6 | ||
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Jean, thank you so much for sharing this with everyone. What scents does the scent test consist of? Is the list they used available online?
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08-12-2008, 08:32 AM | #7 | |||
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Lurking
it's a bit odd - consists of 4 booklets with little "sratch & sniff" spots. each booklet has 10 pages, and each page has four choices & one scratch-sniff spot. You take the pencil (provided) and scribble/scratch on the "spot" and then sniff quickly. Some are easily identifiable - like smoke or menthol or pineapple. Some are more nebulous - like cheddar cheese. You have to makeŽa choice, even if you don't really know - so you make your best guess. here are some examples of the choices we might get on a page - the four choices on the page for the scent: cheddar cheese bubble gum menthol smoke pine musk gas cherries pineapple soap whiskey grass peanuts grass orange chocolate and so on...the booklets come in sealed packages - i don't think they are available on line.
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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. Last edited by jeanb; 08-12-2008 at 08:34 AM. Reason: forgot something... |
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