New to this group

[Guest guest]

My name is Sandy Bierman and I've been reading all your emails for a few

months and my heart goes out to all of you. I'm a caregiver for my husband

Tom. He was dxed with Parkinson's in March '99 as he was about to retire at

62. He did not exhibit tremor and after a year on Sinemet without it

helping, I took him to Stanford Hospital's Motion Disorder Clinic. They then

dxed MSA and added an agonist which he took 6 months with no change. We

treat symptom/problems as they crop up (he doesn't have any OH symptoms or

problems w/BP). Looking back I can see that the classic symptoms started

long before the PD dx. (Sleep disturbance, sleep apnea, urinary problems,

severe constipation, impotence, small & scratchy handwriting, imbalance,

etc.). In Sept. of 2000 he was able to take a trip to Ohio to see relatives

(even handled an 8 hr. layover in Chicago using a walker). Now he sleeps

most day and night, can no longer walk from room to room in the house. He

has some dementia, especially when he first wakes, some short-term memory

problems and some critical thinking and processing difficulties. He seems

(as some others of you) to have eyesight irregularities as well.

He is a big man (6'3 " and about 320 lbs) and this has added to the day to day

difficulties. I have been told that disposable garments are not made any

larger that x-large and they don't fit him length or width wise and

incontinence is a problem whenever he sleeps long. He also has urinary

urgency and frequency.

The meds he takes daily are a multivitamin, Triamterene (to keep his feet

from swelling) 4 stool softeners w/laxative (5 every other day) and 50 mg. of

Zoloft. He has a queen-sized electric bed as we knew he would not be

comfortable in a hospital bed.

I do now have some help in the mornings for him and that's been a blessing

for me as it was becoming overwhelming. I share your sadness and frustration

in dealing with this horrible disease. Tom and I have been together since we

were Seniors in HS and will be married 44 years this October. I know that I

will have many questions to ask and am grateful that I'm not alone in dealing

with this little heard of MSA.

Sandy

[Guest guest]

Sandy,

Welcome to the list. You and Tom got married the same year my wife

Charlotte and I got married. I lost her to MSA last November. Have the

doctors tried anything like Baclofen or Amantadine for his lack of

movement? Some here have tried Aricept for dementia and it has helped

at least some patients.

On briefs there are larger sizes this site has a brief which goes to 64

inch hips

http://www.globalmedicalsolutions.

Then they have other things like condum catheters which some people use

here. Talk to your doctor about the problem.

Take care, Bill Werre

+++++++==========================

sandybierman@... wrote:

>My name is Sandy Bierman and I've been reading all your emails for a few

>months and my heart goes out to all of you. I'm a caregiver for my husband

>Tom. He was dxed with Parkinson's in March '99 as he was about to retire at

>62. He did not exhibit tremor and after a year on Sinemet without it

>helping, I took him to Stanford Hospital's Motion Disorder Clinic. They then

>dxed MSA and added an agonist which he took 6 months with no change. We

>treat symptom/problems as they crop up (he doesn't have any OH symptoms or

>problems w/BP). Looking back I can see that the classic symptoms started

>long before the PD dx. (Sleep disturbance, sleep apnea, urinary problems,

>severe constipation, impotence, small & scratchy handwriting, imbalance,

>etc.). In Sept. of 2000 he was able to take a trip to Ohio to see relatives

>(even handled an 8 hr. layover in Chicago using a walker). Now he sleeps

>most day and night, can no longer walk from room to room in the house. He

>has some dementia, especially when he first wakes, some short-term memory

>problems and some critical thinking and processing difficulties. He seems

>(as some others of you) to have eyesight irregularities as well.

>He is a big man (6'3 " and about 320 lbs) and this has added to the day to day

>difficulties. I have been told that disposable garments are not made any

>larger that x-large and they don't fit him length or width wise and

>incontinence is a problem whenever he sleeps long. He also has urinary

>urgency and frequency.

>

>The meds he takes daily are a multivitamin, Triamterene (to keep his feet

>from swelling) 4 stool softeners w/laxative (5 every other day) and 50 mg. of

>Zoloft. He has a queen-sized electric bed as we knew he would not be

>comfortable in a hospital bed.

>

>I do now have some help in the mornings for him and that's been a blessing

>for me as it was becoming overwhelming. I share your sadness and frustration

>in dealing with this horrible disease. Tom and I have been together since we

>were Seniors in HS and will be married 44 years this October. I know that I

>will have many questions to ask and am grateful that I'm not alone in dealing

>with this little heard of MSA.

>

>Sandy

>

>

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

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Dear Sandy,

Welcome to the group even though I regret the reason for you having

to be here. Rare brain diseases are such a hard thing to deal with.

If you need us please know that we are all here for you. There is

someone who can help you at any time here. We aren't doctors as been

told before but we do care!

God Bless,

Belinda

> My name is Sandy Bierman and I've been reading all your emails for

a few

> months and my heart goes out to all of you. I'm a caregiver for my

husband

> Tom. He was dxed with Parkinson's in March '99 as he was about to

retire at

> 62. He did not exhibit tremor and after a year on Sinemet without

it

> helping, I took him to Stanford Hospital's Motion Disorder Clinic.

They then

> dxed MSA and added an agonist which he took 6 months with no

change. We

> treat symptom/problems as they crop up (he doesn't have any OH

symptoms or

> problems w/BP). Looking back I can see that the classic symptoms

started

> long before the PD dx. (Sleep disturbance, sleep apnea, urinary

problems,

> severe constipation, impotence, small & scratchy handwriting,

imbalance,

> etc.). In Sept. of 2000 he was able to take a trip to Ohio to see

relatives

> (even handled an 8 hr. layover in Chicago using a walker). Now he

sleeps

> most day and night, can no longer walk from room to room in the

house. He

> has some dementia, especially when he first wakes, some short-term

memory

> problems and some critical thinking and processing difficulties.

He seems

> (as some others of you) to have eyesight irregularities as well.

> He is a big man (6'3 " and about 320 lbs) and this has added to the

day to day

> difficulties. I have been told that disposable garments are not

made any

> larger that x-large and they don't fit him length or width wise and

> incontinence is a problem whenever he sleeps long. He also has

urinary

> urgency and frequency.

>

> The meds he takes daily are a multivitamin, Triamterene (to keep

his feet

> from swelling) 4 stool softeners w/laxative (5 every other day) and

50 mg. of

> Zoloft. He has a queen-sized electric bed as we knew he would not

be

> comfortable in a hospital bed.

>

> I do now have some help in the mornings for him and that's been a

blessing

> for me as it was becoming overwhelming. I share your sadness and

frustration

> in dealing with this horrible disease. Tom and I have been

together since we

> were Seniors in HS and will be married 44 years this October. I

know that I

> will have many questions to ask and am grateful that I'm not alone

in dealing

> with this little heard of MSA.

>

> Sandy