He's discontinued his Sinemet

October 29, 2001

Hi Folks. Thanks for all of your answers. is on his way to

the doctor today so hopefully we'll get something ironed out. Tell

me, he says the Sinemet was making him nauseous and very, very sore,

particularly his legs and shoulders. Is this a side effect that may

go away if he continues taking the Sinemet? The only other meds he

is on are permax and selegeline. The paranoia is very upsetting but

if he gets benefits from the Sinemet eventually and the paranoia goes

away I would say it is worth it. How about cognitive

disorganization? Is this a symptom or a side effect? Sometimes it

seems to me he's just not quite there cognitively. Is that a fair

assessment? I tell you, I second guess myself constantly with this.

I'm never sure if it's just me or if it's actually happening.

Bill, I read recently that Charlotte came home from rehab. I'm so

glad and she must be as well.

Any advice anyone can give me would be very much appreciated.

Thanks

Pat from Nova Scotia

October 29, 2001

Pat from NS,

You may have stopped the wrong medicine as permax and selegeline have the

same side effects. In fact it is more a sign of them than Sinemet. There is

a lot of doubt that Permax will work without the L-dopa in the Sinemet.

The Selegiline Hydrochloride info sheet states:

" To treat Parkinsons disease, in conjunction with levodopa/carbidopa. Also

used to treat Parkinson-like syndromes, which may occur following infection

of or injury to the central nervous system (brain and spinal cord), because

of damage to blood vessels in the brain, or after exposure to certain toxins.

Without levodopa/carbidopa, this drug has no known benefit.

So stopping the Sinemet and keeping those is not a good idea. On the other

hand, stopping one of them and staying with the Sinemet may cut the side

effects and still help rigidity. Of those three medicines, the Sinemet helps

the most MSA patients. It is best to work closely with the doctor on changing

meds.

Take care, Bill and Charlotte

pjd@... wrote:

> Hi Folks. Thanks for all of your answers. is on his way to

> the doctor today so hopefully we'll get something ironed out. Tell

> me, he says the Sinemet was making him nauseous and very, very sore,

> particularly his legs and shoulders. Is this a side effect that may

> go away if he continues taking the Sinemet? The only other meds he

> is on are permax and selegeline. The paranoia is very upsetting but

> if he gets benefits from the Sinemet eventually and the paranoia goes

> away I would say it is worth it. How about cognitive

> disorganization? Is this a symptom or a side effect? Sometimes it

> seems to me he's just not quite there cognitively. Is that a fair

> assessment? I tell you, I second guess myself constantly with this.

> I'm never sure if it's just me or if it's actually happening.

>

> Bill, I read recently that Charlotte came home from rehab. I'm so

> glad and she must be as well.

>

> Any advice anyone can give me would be very much appreciated.

> Thanks

> Pat from Nova Scotia

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

October 30, 2001

Dear Pat:

I feel I must jump in here. The time does come in this disease when the patient can no longer make the rules about what goes on in the home. 's behavior has become Demented, and he cannot decide whether you may go to the doctor with him. If you are afraid of his hurting you if you do go, you MUST call the doctor and tell him your fears. You cannot allow to actually harm you physically because he is not in his right mind because of this illness. Not only could you be harmed, but he would have to live with the fact that he had harmed you. You also probably should notify the local police that he is not behaving normally, so they will respond quickly if you call them. I was told this by the members of my support group, but I put it off because ken was a retired Judge and well-known in our community. When the day came that he called and said he was being poisoned by his wife, I was able to talk to them and explain that I should have called them sooner. They said they would be aware now and thanked me.

It is very very hard to realize that the person you married has become someone else, but this is what is going on with and you are now in charge whether you like it or not. The first time I went to the doctor with ken, he was very upset, but the doctor in front of ken asked me to always come with him, so there was very little he could do about that. By the way, because Ken actually had Lewy Body Disease, Aricept put a stop to all that crazy behavior. you might ask your doctor about that.

You are in my prayers,

Barbara

October 30, 2001

Dear Bill and Charlotte. Well...the thing is, has forbidden me

to contact or go to the doctors. He says I cannot go to the

neurologist any more and he won't let me see his GP either. He also

thinks I tried to poison him with some chicken soup, which I had to

give to my daugters family just to get it out of the house it was

such a bone of contention. I must confess, I'm stymied. He has

periods of rage, during one of which, he lifted a big oxygen cylinder

out of the back of his truck and threw it. I've also noticed his

memory has become very selective. He can't remember doing a thing

wrong in his life but contends I have done very little right. Is

this the progress of the disease or is this medication? He has been

on Permax and Selegeline for almost a year and only started the

Sinemet about 2 months ago. He discontinued it by himself about a

week and half ago I guess. Again, any help would be appreciated.

Thanks

Pat from N.S.

>

> > Hi Folks. Thanks for all of your answers. is on his way to

> > the doctor today so hopefully we'll get something ironed out.

Tell

> > me, he says the Sinemet was making him nauseous and very, very

sore,

> > particularly his legs and shoulders. Is this a side effect that

may

> > go away if he continues taking the Sinemet? The only other meds

he

> > is on are permax and selegeline. The paranoia is very upsetting

but

> > if he gets benefits from the Sinemet eventually and the paranoia

goes

> > away I would say it is worth it. How about cognitive

> > disorganization? Is this a symptom or a side effect? Sometimes

it

> > seems to me he's just not quite there cognitively. Is that a fair

> > assessment? I tell you, I second guess myself constantly with

this.

> > I'm never sure if it's just me or if it's actually happening.

> >

> > Bill, I read recently that Charlotte came home from rehab. I'm so

> > glad and she must be as well.

> >

> > Any advice anyone can give me would be very much appreciated.

> > Thanks

> > Pat from Nova Scotia

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

October 30, 2001

Has anyone mentioned the possibility of Parkinsons Disease with Lewy Bodies.

You might want to research. Rage comes with that disease.

Marilyn in TN

> From: pjd@...

> Reply-To: shydrager

> Date: Tue, 30 Oct 2001 14:39:23 -0000

> To: shydrager

> Subject: Re: He's discontinued his Sinemet

>

> Dear Bill and Charlotte. Well...the thing is, has forbidden me

> to contact or go to the doctors. He says I cannot go to the

> neurologist any more and he won't let me see his GP either. He also

> thinks I tried to poison him with some chicken soup, which I had to

> give to my daugters family just to get it out of the house it was

> such a bone of contention. I must confess, I'm stymied. He has

> periods of rage, during one of which, he lifted a big oxygen cylinder

> out of the back of his truck and threw it. I've also noticed his

> memory has become very selective. He can't remember doing a thing

> wrong in his life but contends I have done very little right. Is

> this the progress of the disease or is this medication? He has been

> on Permax and Selegeline for almost a year and only started the

> Sinemet about 2 months ago. He discontinued it by himself about a

> week and half ago I guess. Again, any help would be appreciated.

> Thanks

>

> Pat from N.S.

>

>>

>>> Hi Folks. Thanks for all of your answers. is on his way to

>>> the doctor today so hopefully we'll get something ironed out.

> Tell

>>> me, he says the Sinemet was making him nauseous and very, very

> sore,

>>> particularly his legs and shoulders. Is this a side effect that

> may

>>> go away if he continues taking the Sinemet? The only other meds

> he

>>> is on are permax and selegeline. The paranoia is very upsetting

> but

>>> if he gets benefits from the Sinemet eventually and the paranoia

> goes

>>> away I would say it is worth it. How about cognitive

>>> disorganization? Is this a symptom or a side effect? Sometimes

> it

>>> seems to me he's just not quite there cognitively. Is that a fair

>>> assessment? I tell you, I second guess myself constantly with

> this.

>>> I'm never sure if it's just me or if it's actually happening.

>>>

>>> Bill, I read recently that Charlotte came home from rehab. I'm so

>>> glad and she must be as well.

>>>

>>> Any advice anyone can give me would be very much appreciated.

>>> Thanks

>>> Pat from Nova Scotia

>>>

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

>>> unsubscribe by sending a blank email to

>>>

>>> shydrager-unsubscribe@y...

>>>

October 30, 2001

Pat,

At this point you need to recognize that he needs help and that his

instructions to you not to contact his doctors cannot be followed. Maybe

you have to do it on the sly and ask them not to reveal that you contacted

them, but some medical professional needs to evaluate him for your safety

and his.

Jerry Cash

Re: He's discontinued his Sinemet