Re: Update: trying Levodopa again for my Dad

[Guest guest]

We tried Sinemet with some success during the end stages of Mom's

LBD. About 4 weeks before her death, to be precise. She lost that

Parkinsonian facial " mask " and actually had some facial expression.

It seemed to help with the cramping as well. (side note for anyone

who is interested, my mother got a great deal of relief from her back

spasms by using those wrap-around Therma Care heating products.) We

did not note any increase in the hallucinations, however at that

point, Mom was rarely not hallucinating. She had constant streams of

non-existant visitors, and was always cooking something, usually a

turkey or a leg of lamb. LBD's fluctuations can be disheartening to

say the least, any improvement sends the caregiver's hopes

skyrocketing. I feel as if I have been on an emotional roller

coaster for the last 6 months. The last 3 months had very few

ups...and were physically and emotionally very draining. I wish you

well with the trial of levodopa drugs. I hope the initial success

you are seeing continues. Stay strong and from the voice of

experience, rest whenever you can!

Anne

> > Mark

> > I don't have any information to offer concerning the carbidopa

> meds.,

> > but did want to reply to your email. Please continue to let us

> know how

> > your dad is doing. Strangely enough, with LBD, the fluctuations

can

> > change so much that at one moment we think our loved one will

pass,

> then

> > the next moment they are up and walking around. Please, cherish

> these

> > moments with your dad...whatever they bring. Also, please keep us

> > posted as to the new med. regime and let us know how your dad is

> doing.

> > Stay strong, and my prayers are with you.

> > Sandie

> > Des Moines, IA

[Guest guest]

Mark where in Canada are you from?

Kath from Toronto

Update: trying Levodopa again for my Dad

> Folks have kindly asked to be updated on our experiment to

> reintroduce Sinemet (carbidopa/levodopa) to my Dad, whose LBD is

> pretty advanced and -- until now -- getting so stiff it's was

> affecting his ability to sit in a wheelchair or to be fed.

>

> It's just one case, but so far, so good. We are ten days into the

> Sinemet therapy, still being titrated up. No side effects

> noticeable. And the effectiveness is fairly impressive.

>

> Dad's hands are much less gnarled. Sitting nicely in the

> wheelchair. Easier to get in and out of bed. No parkinsonsian

> freezing of the face. Yesterday we went for his first (assisted)

> walk for about two months.

>

> My mother, who visits four hours every day, before the levodopa

> started, was working herself into a frenzy " managing " the stiffness.

> But yesterday she was positively euphoric about what a good day my

> Dad was having.

>

> Please don't be suspicious -- I'm not trying to sell the stuff. In

> Canada, it's generic, so no one makes any real money on it. Levodopa

> just a garden variety medication that most LBD folks stop in the

> early stages, because it might trigger some cognitive side effects so

> we figure we can live with the stiffness. And that was the right

> decision then. But in later-stage LBD, the stiffness can get very

> very problematic, and we have tried putting it back on, and are

> pleased with the results.

>

> Anyway, it's only one case. But so far, so good. It was a good

> visit yesterday.

>

> Mark

>

>

>

> > Mark

> > I don't have any information to offer concerning the carbidopa

> meds.,

> > but did want to reply to your email. Please continue to let us

> know how

> > your dad is doing. Strangely enough, with LBD, the fluctuations can

> > change so much that at one moment we think our loved one will pass,

> then

> > the next moment they are up and walking around. Please, cherish

> these

> > moments with your dad...whatever they bring. Also, please keep us

> > posted as to the new med. regime and let us know how your dad is

> doing.

> > Stay strong, and my prayers are with you.

> > Sandie

> > Des Moines, IA

>

>

>

>

[Guest guest]

Mark,

This is really good information to share. I'm so glad your mom was

euphoric over your dad's improvement. My mom's really struggling with

my dad's decline, and it's rough to see your " healthy " parent become

so distraught.

Thanks, Terri

> > Mark

> > I don't have any information to offer concerning the carbidopa

> meds.,

> > but did want to reply to your email. Please continue to let us

> know how

> > your dad is doing. Strangely enough, with LBD, the fluctuations

can

> > change so much that at one moment we think our loved one will

pass,

> then

> > the next moment they are up and walking around. Please, cherish

> these

> > moments with your dad...whatever they bring. Also, please keep us

> > posted as to the new med. regime and let us know how your dad is

> doing.

> > Stay strong, and my prayers are with you.

> > Sandie

> > Des Moines, IA