Parkinson's Disease Tulip


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Old 09-19-2018, 11:30 AM #11
ashleyk ashleyk is offline
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ashleyk ashleyk is offline
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Default Rytary

I have mentioned this before. If you are having periodic stiffness and are taking Sinemet, you should ask your doc to Rx Rytary. Rytary is Sinemet but comes as a capsule with small timed release particles and should better even out the dopamine swings your brain has when on Sinemet..
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Old 09-19-2018, 01:26 PM #12
KNPV KNPV is offline
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I live in Florida, North Carolina and Philadelphia. What this means to me is that at various times of the year I am in places where there are choices for DBS. Coming to mind are U of Florida, North Carolina at Chapel Hill, and Philadelphia at University of PA (HUP) and its' affiliates. Does anyone have opinions about choice? Thanks! (U of NC is not in the picture now because of the terrible flooding we have had there. I am in Florida now. I "should" be in NC but have to wait until the floods have subsided.)
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Old 09-19-2018, 01:30 PM #13
zanpar321 zanpar321 is offline
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Quote:
Originally Posted by ashleyk View Post
I have mentioned this before. If you are having periodic stiffness and are taking Sinemet, you should ask your doc to Rx Rytary. Rytary is Sinemet but comes as a capsule with small timed release particles and should better even out the dopamine swings your brain has when on Sinemet..
Magnesium goes a long way toward reducing stiffness. I also take extended release (ER) Sinemet. DBS has reduced my tremor 95%, I love it!
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Old 09-21-2018, 10:29 AM #14
soccertese soccertese is offline
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has your neuro told you he/she thinks you would be a good candidate for DBS? That's your first step, if your neuro thinks it is your best choice then believe him/her. noone is going to really try to convince you, they'll give you facts and leave it up to yourself/family to ponder. neuros are busy and don't have a lot of time to discuss DBS with you if your're on the fence. but if they say your're a good candidate, then don't wait, get it done, imho a reputable neuro imho isn't going to recommend a DBS unless it is the best choice for you, they put their reputation on the line everytime the recommend a DBS so won't recommend it to someone who isn't going to first past the tests and second be able to handle the stress of 2 operations and a year of programming the neurotransmitters.

i was approved and scheduled for surgery but backed out of it. i just didn't feel i had the family/friends behind me if something bad happened. i'm single, no significant other and if by chance i was one of the few that had something serious happen i would be alone. I had my doubts about this from the start but noone seemed concerned so i stopped worrying about it until someone on this board had a DBS, SCOTT someone - military - and he developed a serious infection and was in the hospital for awhile. then a friend loaned me a book written by someone who had to have all of the DBS equipment replaced after a year, the risk is low but i just couldn't put the burden of my becoming incapacitated or having to be hospitalized for awhile on my sister who has a full time job. i'm also not on medicare and having TRUMP as president scared me out of the DBS, he pledged to get rid of the AFCA and i didn't want to take the risk the i'd get the DBS and then not be able to get affordable health insurance within the next year. if i was married, then i would have gone thru with it without hesitation and probably years ago. as an aside, when i cancelled the surgery, nobody made a big deal about it. noone tried to change my mind, there was no discussion. medical people dealing with pd are busy and above all, they don't want to operate on someone who might back out when they are on the operating table. doesn't matter to them, there is a lineup of people waiting for a DBS.
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"Thanks for this!" says:
jeffreyn (09-21-2018)
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