Seeing things

[Guest guest]

I'm a little behind in reading these posting so others may have responded.

However I thought I would share some of Peg's experiences with medicine and

hallucinations

Peg exerienced seeing things several times some years ago. Peg had been

taking more and more sinemet because she could not stand the shaking of her

right hand. We were able to cut back on the sinemet to a more normal dose,

especially after adding the use of sinemet cr (continuous release). More

recently we were able to cut back on sinemet through adding the medicine

comtan, a medicine that helps the sinemet work better. Some also use mirapex

for the same purpose although it doesn't seem to help Peg.

For over 10 years Peg has regularly taken a 100% carbohydrate drink for

breakfast so that there is no protein to limit the effect of the sinemet at

the start of the morning. Anecdotal evidence seems to indicate that it

helps. Variations of the value of a low protein diet are mention in the

literature in various ways. This works for us.

Peg took aricept for about a year and a half and there was a remarkable

improvement in her condition for about a year. Then it seemed to stop

working (or Peg just got that much worse). Again anecdotal evidence

indicates that others have had the same experience although some have gotten

help from aricept for a much longer time. Peg is using exelon now rather

than aricept and with the doctors ok we are trying an increase of the dose.

So far there doesn't seem to be much difference.

Another way Peg's current neurologist is trying to help Peg deal with seeing

things is through the use of seroquel (100 mg morning and evening). Peg had

to work up to that dose over a period of weeks. It seems to be helping

although it's hard to tell.

Peg and Jim from Guam

*******************

Date: Fri, 06 Sep 2002 14:05:35 -0500

Subject: Re: Many Differences

,

My thoughts go out to you. This is truly a devastating disease.

I am not trying to take anything away from your thoughts. You certainly may

be exactly right.

But, my husband takes a large amount of sinement because of his rigidity.

The neuro said that we would know when he had to much, because he would

think that he was seeing things. That has happened to him twice. Each

time, he was ill with digestive problems and had been unable to eat much.

Once he was able to eat, he appeared to not have that problem.

Just an idea that you might want to ask about.

Marilyn in TN

>

> Reply-To: shydrager

> Date: Sun, 4 Sep 2011 18:20:31 -0700

> To: shydrager >

> Subject: Many Differences

>

> As I have been reading the mail as much as possible, I think I have to put

> my twocents woth in as to the many differences of this terrible disease.

>

> Warren was diagnosed with SDS 12/01/99 and progressed fairly rapidly. The

> last few months his b/p has been under control with midorine, but the

> dementia has grown very rapidly. He also has such tremors that the Dr. put

> him on Sinemet. About 2 months ago his tremors grew so badly that they

> increased the sinemet dosage which threw him into worse dementia. That with

> a UTI had him about " climbing the walls " and being very agressive. They

> reduced the sinemet and cured the UTI and hes calmed down.

>

> His dementia, seeing things that are not there, being afraid, (hears

> something n TV about a fire or gunmen) and thinks its all taking place right

> here. I've been reading up on Lewy Bodies Dementia and from what I read it

> fits his action to a tee. We see his neurologist in a couple weeks and I'm

> going to ask him about Aircept. Somedays he's okay and others he sleeps or

> is way out of his head. I see him everyday and help him eat. Sometimes he

> can feed himself and others he can't move anything, or even open his eyes.

>

> He can't be up by himself or he falls, tho' he keeps trying first thing in

> a.m. Also he doesn't sleep many nights so is exhausted. He recognizes me

> most of the time but doesn't know who he is.

>

> I'm probably saying this badly but wanted to show the newer " members " some

> of the things that go on. I do have him in a nursing home as there is no

> way I could tend him at home.

>

> Strong

>

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

****************

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*** Peg & Jim

*** # 29 Cruz Heights

*** Ipan-Talofofo, Guam 96930-4736

*** USA

***

*** Note: Guam is 15 hours ahead of

*** Eastern Standard Time (EST).

*** 14 ahead of EDT.

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