Re: Re: update on my mom/ lying/

[Guest guest]

Hi Jan and ,

Although I haven't been diagnosed with RLS officially I truly believe that I

have it. Sometimes I can't get to sleep because of it. For me it happens

mostly in my left leg. I can understand why Jim felt it was like worms inside.

I feel like there is something inside my leg that is making it constantly lift

up no matter how much I want it to stay still. It is a very uncomfortable

feeling and very distracting. I can also understand why Jim has to move around.

I also find that if I massage my leg and ankle it sometimes settles down.

Just thought I'd give a relatively lucid person's perspective on RLS. Thank

goodness my mom doesn't have it.

Take care. Doris in Mississauga

LO- Mom-Ramona; aged 76; dx'd Mar. 2005; meds: Reminyl, Wellbutrin, Fosomax;

still living independently with supervision from Peel Senior Links

stimtimminss wrote:

Hi Jan,

What you wrote reminded me of my mother's initial discomfort prior to her

" Parkinsons "

diagnosis. She said she felt extremely uncomfortable, like she was tremoring

inside,

nothing noted outside except for obvious tremoring at rest with her right arm.

MANY

years ago!

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give

up her

licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

> > >

> > > > Hi Everyone

> > > >

> > > > I have just finished reading many days worth of

> > > > posts.

> > > > I have been away from my computer for quite a

> > > while

> > > > and just wanted to bring you up to date on my

> > mom.

> > > >

> > > > My Mom was moved to the NH two weeks ago today.

> > > She

> > > > is

> > > > actually eating pretty well now. They are giving

> > > her

> > > > puree foods which are really hard for me to

> > > stomach,

> > > > yet I have been feeding her as much as she will

> > > eat.

> > > > She still does not like to drink much which is a

> > > > problem.

> > > >

> > > > The Hospice nurse believes she may have a UTI,

> > but

> > > > no

> > > > test was done. She is however, being treated for

> > > an

> > > > infection. She has a catheter now also.

> > > >

> > > > I have read all the posts about lying and I

> > > started

> > > > out trying to always tell the truth and be

> > honest

> > > > with

> > > > my mom. However, it would upset her and she

> > would

> > > > cry

> > > > and get agitated, so I began to lie to her. But

> > I

> > > > soon

> > > > realized I was not lying to her, just going

> > along

> > > > with

> > > > her hallucination. She would ask me how old the

> > > > children were, when no one was home, but myself

> > > and

> > > > her and I would say 5 and 7. That would satisfy

> > > her.

> > > > It was so much easier for us both and I got over

> > > the

> > > > fact that I felt like I was lying to my mother

> > and

> > > > she

> > > > would find out and be mad at me. She never knew

> > > and

> > > > it

> > > > made life much, much easier for us all.

> > > >

> > > > Now, I just wish I had one of those days back.

> > My

> > > > mother no longer responds to 98% of what you say

> > > to

> > > > her. She once in a blue moon will say Hello, if

> > > you

> > > > say hello first, but mostly she does not even

> > make

> > > > eye

> > > > contact with me. I have not noticed others

> > saying

> > > > that

> > > > this is what has happened to their LO's. It

> > makes

> > > me

> > > > think that being on the Risperdal for months has

> > > > just

> > > > destroyed her brain. She is practically a

> > > vegetable

> > > > now. Her only response is to pain. I sit at the

> > NH

> > > > for

> > > > hours and get nothing from her all day long. I

> > > > battle

> > > > in my own head about not stopping the

> > medications

> > > > sooner. What do the rest of you think? Could

> > this

> > > be

> > > > medication or is it just the progression of the

> > > > insidious disease. She is in the forever end

> > > stages

> > > > of

> > > > LBD. She started with cognitive problems, then

> > on

> > > to

> > > > hallucinations and finally PD symptoms. She took

> > > > Aricept for 18 months. In May of 2005 she began

> > > > Risperdal, Clonazapam and Namenda and Prozac.

> > She

> > > > continued on them all until Jan 2006. As I

> > > > complained

> > > > about the Risperdal and asked repeatedly for the

> > > > Seroquel I was told that the Risperdal was

> > working

> > > > so

> > > > why change it. I went along with that

> > Philosophy.

> > > > now

> > > > I think I did the wrong thing. The Hospice Dr.

> > > will

> > > > not use Seroquel now as it is too expensive and

> > > > Medicare will not pay for it. I don't think it

> > > would

> > > > do any good anyway now. She is just gone. Her

> > body

> > > > lives on and her mind has just evaporated. It is

> > > the

> > > > saddest thing to watch. She was very

> > intelligent.

> > > > She

> > > > had an almost photographic memory. My son has

> > > > inherited that ability now.

> > > >

> > > > If anyone has a comment on what they think I

> > would

> > > > love to here from you.

> > > >

> > > > Dena

> > > >

> > > > Mother (83) dx April 2005 with LBD

> > > >

> > > >

> > __________________________________________________

> > > >

[Guest guest]

Hi Doris,

Jim was attacked with RLS in the early 90s and it was

just like LBD, doctors had not heard of it and my

husband went to two or three doctors that for the most

part told him, the feelings in his legs were all in

his head and wanted to send him to a psychiatrist, but

my husband would not go to a psychiatrist and finally

found a doctor that did know the symptoms and what my

husband was telling him and dx him with RLS.

Doris, it is like you, he would not go to the movies

or for long rides in the car or things where he had to

sit for long periods, even going to bed and lying down

brought it on. He would slap at his legs over and over

and get up and walk round and round. He did not want

to sit or lay down, because then his legs would start

the movement in them. As long as he was in movement

himself, he did not feel it. We even joined an RLS

Support group in our community and received the RLS

Newsletter. It was amazing how many people turned out

for that support group. There is medication to help

with it now, but then there wasn't or the doctors

didn't know what medications could help. They were

basically perscribing Vicodin, which does help my

husband to sleep and not feel the movements in his

legs. Vicodin is addictive, but Jim has been on it for

so long for RLS, that I can't take him off of it now

and at this point who cares if it's addictive. They do

have Requip now as the medication for RLS. Jan

--- DORIS KARATOPRAK wrote:

> Hi Jan and ,

>

> Although I haven't been diagnosed with RLS

> officially I truly believe that I have it.

> Sometimes I can't get to sleep because of it. For

> me it happens mostly in my left leg. I can

> understand why Jim felt it was like worms inside. I

> feel like there is something inside my leg that is

> making it constantly lift up no matter how much I

> want it to stay still. It is a very uncomfortable

> feeling and very distracting. I can also understand

> why Jim has to move around. I also find that if I

> massage my leg and ankle it sometimes settles down.

>

>

> Just thought I'd give a relatively lucid person's

> perspective on RLS. Thank goodness my mom doesn't

> have it.

>

> Take care. Doris in Mississauga

>

> LO- Mom-Ramona; aged 76; dx'd Mar. 2005; meds:

> Reminyl, Wellbutrin, Fosomax; still living

> independently with supervision from Peel Senior

> Links

>

> stimtimminss wrote:

> Hi Jan,

> What you wrote reminded me of my mother's initial

> discomfort prior to her " Parkinsons "

> diagnosis. She said she felt extremely

> uncomfortable, like she was tremoring inside,

> nothing noted outside except for obvious tremoring

> at rest with her right arm. MANY

> years ago!

>

> , Oakville Ont.

>

> Mom 92, 12 1/2 years " Parkinsons "

> 3 years ago LBD diagnosis, evident much longer in

> hindsight. Encouraged to give up her

> licence 6 years ago.

> Currently immobile, in tilt wheelchair, spoonfed

> pureed food. Spends most of days behind

> closed eyes.

> Eltroxin, Tylenol twice a day.

>

>

> > > >

> > > > > Hi Everyone

> > > > >

> > > > > I have just finished reading many days worth

> of

> > > > > posts.

> > > > > I have been away from my computer for quite

> a

> > > > while

> > > > > and just wanted to bring you up to date on

> my

> > > mom.

> > > > >

> > > > > My Mom was moved to the NH two weeks ago

> today.

> > > > She

> > > > > is

> > > > > actually eating pretty well now. They are

> giving

> > > > her

> > > > > puree foods which are really hard for me to

> > > > stomach,

> > > > > yet I have been feeding her as much as she

> will

> > > > eat.

> > > > > She still does not like to drink much which

> is a

> > > > > problem.

> > > > >

> > > > > The Hospice nurse believes she may have a

> UTI,

> > > but

> > > > > no

> > > > > test was done. She is however, being treated

> for

> > > > an

> > > > > infection. She has a catheter now also.

> > > > >

> > > > > I have read all the posts about lying and I

> > > > started

> > > > > out trying to always tell the truth and be

> > > honest

>

=== message truncated ===

__________________________________________________

[Guest guest]

Doris,

I know this is going to sound like I am nuts, but I recently read in the paper

that anyone with RLS might want to put a " bar of soap " under the sheets.

Everyone who write to the MD in the paper swore it worked. He said he had heard

that it did and he had no scientific info to back it up. He just had a lot of

people who said it worked.

I would love to know if it does. I don't know if he meant between the sheets or

under the bottom sheet, but it sure wouldn't hurt or cost much to try it.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

Re: Re: update on my mom/ lying/

[Guest guest]

Hi Donna,

That's an easy one to try. Doris

Donna Mido wrote:

Doris,

I know this is going to sound like I am nuts, but I recently read in the paper

that anyone with RLS might want to put a " bar of soap " under the sheets.

Everyone who write to the MD in the paper swore it worked. He said he had heard

that it did and he had no scientific info to back it up. He just had a lot of

people who said it worked.

I would love to know if it does. I don't know if he meant between the sheets or

under the bottom sheet, but it sure wouldn't hurt or cost much to try it.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the LBD

Newsletter. Just click on:

http://www.lewybodydementia.org

Re: Re: update on my mom/ lying/

[Guest guest]

Donna R. I read this about soap helping RLS, too. I also wonder if it works.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May.

In a message dated 3/23/2006 1:23:18 AM Central Standard Time,

twomido@... writes:

Doris,

I know this is going to sound like I am nuts, but I recently read in the

paper that anyone with RLS might want to put a " bar of soap " under the sheets.

Everyone who write to the MD in the paper swore it worked. He said he had

heard that it did and he had no scientific info to back it up. He just had a

lot of people who said it worked.

I would love to know if it does. I don't know if he meant between the

sheets or under the bottom sheet, but it sure wouldn't hurt or cost much to try

it.

Donna R

[Guest guest]

Dr. Gott, whose column appears in many newspapers, is

the one who tells about the soap, and it originally

was being praised for help with leg cramps. However,

recently, someone wrote that it had helped RLS. I

tried it for leg cramps and didn't have as good of

results, but if I remember correctly, it had to be

certain kinds of soap - not deoderant soaps I recall.

--- Iward27663@... wrote:

>

> Donna R. I read this about soap helping RLS, too. I

> also wonder if it works.

> Imogene

>

> Caregiver for my True Texas Gentleman husband of 35

> years. He has AD and

> possibly LBD, is Taking Aricept and Risperdal. Age

> 72 in May.

>

>

>

>

> In a message dated 3/23/2006 1:23:18 AM Central

> Standard Time,

> twomido@... writes:

>

> Doris,

>

> I know this is going to sound like I am nuts, but I

> recently read in the

> paper that anyone with RLS might want to put a " bar

> of soap " under the sheets.

> Everyone who write to the MD in the paper swore it

> worked. He said he had

> heard that it did and he had no scientific info to

> back it up. He just had a

> lot of people who said it worked.

>

> I would love to know if it does. I don't know if he

> meant between the

> sheets or under the bottom sheet, but it sure

> wouldn't hurt or cost much to try it.

>

> Donna R

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________