Yes, strangely, Derek's mobility seems to have improved since we decreased his Sinemet a little less than a week ago. He is walking better [still requires two people, gait belt and walker] and I mentioned the medication change to the PT. She was surprised, too. He is still unable to get up or pivot and would lose his balance if he weren't being supported but walking daily with the PT keeps his legs strong and flexible. Could just be a coincidence--we'll see--but it's good to see him more mobile and he is feeding himself again, too.

Ah, the mysteries of Lewy! Whatever the cause, I'm glad that Derek is able to get some exercise and maintain his leg strength.

Yes, this is surprising.

It could be just a Lewy phase thing but it is interesting to note that ataxia is listed as a side effect of Sinemet.

Pat - that's great that Derek's mobility is better. I hope it lasts a long time. Lynn

Whatever the reason, I am glad he is feeding himself and moving with more purpose.

On the other hand, we are decreasing Del's Sinemet because of his hyper-impulsivity. We are trying to find the place where he will not hurt himself due to impulsive behaviors and yet can still move a little bit independently to help in transfers and getting into and out of a car. If he gets very much Sinemet, the hallucinations and the aggressive/agitated behaviors are just too difficult to deal with.

I emailed his Neuro asking the question of how low could I go with the Sinemet and he responded with a phone call. He said that the halluciantions often led to a strong reduction in Sinemet and that I could slowly taper him off but not to go so low that he experienced pain from stiffness. So...we are going to begin that process. I want my tender, soft hearted Del back instead of this paranoid, suspicious fellow who has been sharing the house with me.

Wish us luck. Smiles, Nan

Oh, I do wish you luck, Nan!

Thanks. Sometimes these med changes bite me in the butt. But I am hopeful. Nan

A sudden, complete d/c of levodopa-carbidopa can lead to NMS in some cases, so it does have to be gradual.

I hadn't thought of 'pain from stiffness' as a result of cutting back on Sinemet. Dale complains about pain constantly.

He had an awful night last night... but is very calm this morning. I didn't give him the half pill of Sinemet this morning. I just couldn't do it. It seems to me that he needs a day of calm... if that's possible.

What a battle this is.... He can no longer stand by himself and walking has been too hard for him the last two times we've tried.

(A sudden, complete d/c of levodopa-carbidopa can lead to NMS in some cases, so it does have to be gradual.)

I am feaathering it back slowly. Was doing so before I talked to the Neuro as Del was sleeping so much that the last dose was after he went to bed. So that dose was taken away. Then I started giving him half doses at closer intervals so I could reduce by only 1/2 pill at a time. I have learned to never abruptly stop a med. But a good reminder. Thanks. Smiles, Nan

I only mentioned that because I saw it in my PDR which my daughter brought to me yesterday--her medical office buys new ones every year so I got a 2010 version. I hadn't known that was a risk. One certainly gets a lot more information about medications in the PDR than in the inserts!