Re: Miraculous Improvement After Going Off Sinemet?

[Guest guest]

My husband has never been on Sinemet; at this point is

not drooling, but has had runny nose a lot. He is not

getting better, tho, and I decided to take him off

Aricept. They say it doesn't work after 4-5 years,

and he has been on it since 1999. I hope it wasn't a

mistake. Part of his problem now is that the NH is

giving him Ativan, which I have objected to, but they

say he has to have something to calm him. I have seen

a decided decline in him since they started it. I

hope your FIL keeps improving.

--- aswest1021 wrote:

> Sorry to keep asking this question. I'm just

> curious how many, if

> any, of your LO's got remarkably better after they

> stopped taking

> Sinemet? My MIL swears that my FIL's drooling has

> all but stopped and

> that he's getting around better now. She did,

> however, say that he

> seems to be stiffer, but my FIL doesn't agree. If

> this, in fact, is

> the case can we expect improvements to continue? I

> can't help but

> think that if it were as simple as going off

> Sinemet, everyone with

> LBD would be able to live a good life.

>

> I'll post more about my own dad later.

>

> April

>

>

>

>

>

__________________________________________________

[Guest guest]

June,

You might try asking them to divide the pill. He might be able to handly half

two times a day, better than the mg's they want to give him. He will still calm

down but the amount will be easier to hand for him.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: " Miraculous " Improvement After Going Off Sinemet?

My husband has never been on Sinemet; at this point is

not drooling, but has had runny nose a lot. He is not

getting better, tho, and I decided to take him off

Aricept. They say it doesn't work after 4-5 years,

and he has been on it since 1999. I hope it wasn't a

mistake. Part of his problem now is that the NH is

giving him Ativan, which I have objected to, but they

say he has to have something to calm him. I have seen

a decided decline in him since they started it. I

hope your FIL keeps improving.

--- aswest1021 wrote:

> Sorry to keep asking this question. I'm just

> curious how many, if

> any, of your LO's got remarkably better after they

> stopped taking

> Sinemet? My MIL swears that my FIL's drooling has

> all but stopped and

> that he's getting around better now. She did,

> however, say that he

> seems to be stiffer, but my FIL doesn't agree. If

> this, in fact, is

> the case can we expect improvements to continue? I

> can't help but

> think that if it were as simple as going off

> Sinemet, everyone with

> LBD would be able to live a good life.

>

> I'll post more about my own dad later.

>

> April

>

>

>

>

>

__________________________________________________

[Guest guest]

Not everyone goes on Sinemet for LBD. Sinemet is for the Parkinsonism -

but the warnings are that Sinemet can lead to further hallucinations

and more cognitive decline. People weigh the pros and cons regarding

helping with the Parkinsonism vs. the Cognitive skills. I chose not to

address mom's Parkinsonism - of course I was tempted to see if Sinemet

or another med for Parkinsonism would help considering my mom is

currently in a wheelchair -- but I didn't want to bring on more

hallucinations than she already has (mostly she hallucinates my

dad, " two beautiful red-haired boys " and a cat) Mainly the

hallucinations don't scare her -- but don't want to introduce a med

that may bring scary hallucinations...

[Guest guest]

,

I apologize; I just assumed that all LBDer's had to take Sinemet.

Don't most of them have problems with rigidity and freezing? My in-

laws will be here again this week for yet another appointment at

Emory. My MIL is insistant that my FIL be seen every 6-8 weeks.

Isn't that sort of unusual? I expected him to be seen about every 3

months or so.

April

>

> Not everyone goes on Sinemet for LBD. Sinemet is for the

Parkinsonism -

> but the warnings are that Sinemet can lead to further hallucinations

> and more cognitive decline. People weigh the pros and cons regarding

> helping with the Parkinsonism vs. the Cognitive skills. I chose not

to

> address mom's Parkinsonism - of course I was tempted to see if

Sinemet

> or another med for Parkinsonism would help considering my mom is

> currently in a wheelchair -- but I didn't want to bring on more

> hallucinations than she already has (mostly she hallucinates my

> dad, " two beautiful red-haired boys " and a cat) Mainly the

> hallucinations don't scare her -- but don't want to introduce a med

> that may bring scary hallucinations...

>

[Guest guest]

april,

dads' neuroloigst saw daddy every 8 weeks, at time dad was on exelon and near

the end wwe attemepted to add namenda to the regime. sinemet made my dad go

bonkers so we stopped it after the second dose which was still only1/2 of what

was recommeneded. hugs, sharon m

---- aswest1021 wrote:

,

I apologize; I just assumed that all LBDer's had to take Sinemet.

Don't most of them have problems with rigidity and freezing? My in-

laws will be here again this week for yet another appointment at

Emory. My MIL is insistant that my FIL be seen every 6-8 weeks.

Isn't that sort of unusual? I expected him to be seen about every 3

months or so.

April

>

> Not everyone goes on Sinemet for LBD. Sinemet is for the

Parkinsonism -

> but the warnings are that Sinemet can lead to further hallucinations

> and more cognitive decline. People weigh the pros and cons regarding

> helping with the Parkinsonism vs. the Cognitive skills. I chose not

to

> address mom's Parkinsonism - of course I was tempted to see if

Sinemet

> or another med for Parkinsonism would help considering my mom is

> currently in a wheelchair -- but I didn't want to bring on more

> hallucinations than she already has (mostly she hallucinates my

> dad, " two beautiful red-haired boys " and a cat) Mainly the

> hallucinations don't scare her -- but don't want to introduce a med

> that may bring scary hallucinations...

>

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away