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 New member, and needing support and information. 
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Joined: Sat Feb 07, 2009 9:54 am
Posts: 1
Post New member, and needing support and information.

I am a new member and a bit unsure how to use this forum.

Anyway, my mom has lewy body and just came home from a month of rehab due to a recent hospital stay for Diverticulosis. We took her off the Sinemet and now regret it because she has more tremors. so now we are putting her back on the Sinemet. I'm not sure if it really works. my dad takes care of her at home and he is 81. My mom is 78. it feels like I am on an emotional rollercoaster. we receive services for her at home so that my dad gets a break. I accompany her to doctors appointements and visit almost daily.

Has anyone had any experience with sinemet and it's effectiveness with lewy body?

Hope to hear from you.



Mon Feb 09, 2009 4:59 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Lisa --
One thing you can do is go to the top of this page and click on "search." Type sinemet in as the search world, and you will get a listing of all the posts where it has been mentioned (and it has been talked about a lot so you'll find lots of info). That may help until someone responds more directly to your question.

Renata (and Jerome-in-Heaven)

Mon Feb 09, 2009 5:46 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
And check out Boeve's "Continuum" paper to see what he has to say about levodopa therapy.

Mon Feb 09, 2009 8:07 pm

Joined: Fri Jan 23, 2009 4:11 pm
Posts: 31
Location: N Calif
Post sinemet- generic-Carbidopa/Levadopa-
My husband was diagnosed with LBD in 2000. Mirapex helped him in the early days. his RX was changed to Carbidopa- Levadopa ER(Extended Release)in 2004. Comtan was added in 06-this is to help level the bodies intake of the sinemet. This has kept his parkinsons stiffness at comfortable levels. of course, Aricept and Namenda were added as necessary to keep up with the mental slippage. Last year Carbo/Levo was changed to a lower mg dose,without the ER, but given 4 times per day and with the ER given at bedtime. This form of sinemet must be taken 1/2 hour before foods or or 1 hour after meals, as the protein in foods steals the dopimine before it gets to his brain. It is now very evident when pill time has been missed as his eyelids become very reddend, and his speech very disorganized, and he looses all sense of balance because all his muscles tense up. He is also most likely to show his irritation-and tell me I'm "torturing him"at these times.
As long as I am very regular with his pill and meal schedule, he is comfortable and co-operative- giving me "thanks for helping" and hugs.
PS- His constant runny nose has been greatly reduced with this new med schedule !!!! YEA !!!


Sat Feb 14, 2009 3:32 pm

Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
Hello, Lisa. Welcome, though I'm sorry you have a reason to join us.

We tried my mother on carbadopa levadopa (forgive the spelling, please) but saw no improvement so we discontinued it. At that time, about a year ago, she was still walking. Her confusion and psychosis were worsening -- another reason to stop the drug, though these symptoms did not improve after the drug was discontinued so they were probably unrelated. Mother now cannot walk at all and provides very little help with transfers. In fact, she tends to fight being moved. I sometimes wonder if we should try again, but I'm reluctant because getting her psychosis stabilized was so difficult.

As you'll learn, every patient responds differently to meds and has a different set of symptoms. All we can do is try if something offers a decent possibility of helping, with the golden rule being start at the lowest possible dose till you see what's happening.


Sat Feb 14, 2009 9:32 pm
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