Parkinson's Disease Tulip


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Old 08-12-2021, 12:54 PM #1
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Hi, My now deceased husband had Parkinson's disease for 16+ years (he knew he had PD but did not want the diagnosis on his records until he needed meds). I became a member of the old neurotalk forum and then transferred to this site. what has happened to the once robust forum? has another site replaced this one? I continue to keep up with PD news, though not to the level I did when my husband was alive. This forum was such a help to me and my husband for many years. I still check back in to read any new posts and check up on the members . Stay safe everyone, madelyn Levy
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Old 08-16-2021, 01:05 PM #2
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Default Me too.

Hi,
I joined in 2006 and remember the old Braintalk. A lot of members have come and gone. I have been disappointed that the ones who have had DBS, like Steven, have never followed up after. I remember Daffy Duck aka the Godfather. He was irreverent and upset some people but I found his posts interesting.
I too have not posted or visited as frequently now. My wife who has had PD for 20 years now and is with Hospice for the past 3 months, could be many more. I have given up on waiting for the "cure" that is always a year away. I can only say take anti-inflammatories like Curcumen.
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Old 08-17-2021, 04:11 PM #3
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Default Ditto here

My husband also passed away, after 15 years of Parkinson's, but who really knows how long someone "has" Parkinson's? I was pretty active on this forum as well but became less so when my husband's needs increased and time became scarce.

I found this forum invaluable when we were struggling with Parkinson's. I hope that it continues and is able to help those who come here seeking information, shared experiences, and a sense of community.
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Old 10-16-2021, 04:29 PM #4
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Quote:
Originally Posted by olsen View Post
Hi, My now deceased husband had Parkinson's disease for 16+ years (he knew he had PD but did not want the diagnosis on his records until he needed meds). I became a member of the old neurotalk forum and then transferred to this site. what has happened to the once robust forum? has another site replaced this one? I continue to keep up with PD news, though not to the level I did when my husband was alive. This forum was such a help to me and my husband for many years. I still check back in to read any new posts and check up on the members . Stay safe everyone, madelyn Levy
Hello Madyln
I iremeember your feedback and entries well. I have ebeen struggling with PD for the last 26 years. I eventually had DBS and it took my tremor away completely but after 4 yeqrs now my mobility has decreased to a point where I am mostly in aa wheel chair all my waking hours. Not as hopeful as I used to be when I was diagnosed in 1997 and was told "Oh in 5 years there will be a cure". Best wishes to all he old timers!
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