Re: just diagnosed - SDS

[Guest guest]

& Jo,

I'm sorry your Mom has been diagnosed with Shy-Drager Syndrome. You

have come to the right place - we have lots of information and this

group is very helpful. Most of us are not medical professionals, but

concerned patients and caregivers like yourselves who want to find

out more about this illness and to help others.

The best place to start is the " bookmarks " link at the left side of

this page. There are loads of links to general descriptions of SDS

(also knows as Multiple System Atrophy) and to symptom management

tools and medications. Read as much as you can, then come back and

ask questions. NO QUESTION IS STUPID! Sometimes even us non-medical

types can fall into jargon. If you don't understand, please ask.

I am assuming that your mother is being treated by a neurologist with

some expertise in movement disorders and/or autonomic failure. If

not, try to get someone with this type of expertise. You mentioned

Duke Medical Center, so I'm assuming that kind of care is available.

Anyway, that's where to start. But come back and ask questions -

you'll have lots! and we'll be glad to help.

Carol & Rob Langer

Lexington, MA

> Our mom was diagnosed with Parkinsons Plus three years ago at Duke

> Medical. She has been going downhill since. Quality of life is

very

> poor and she is only 70 yrs.

>

> She went into the hospital last week in pain and feeling awful.

She

> has a grade 4 urinary infection, potassium levels out the bottom

and

> had to have her gall bladder removed.

>

> While she was ( is ) in the hospital her neurologist removed her

from

> her senemet ( sp ) to observe her. After two days he diagnosed her

> with Shy Dragger. We had suspected this all along but have had a

> difficult time opening eyes and ears.

>

> Now that we have found this group -----Where do we start?? Assume

we

> know nothing and pls give us the basics of dealing with this

> disease. Our goal is to improve her quality of life - somehow -

> mentally and physically.

>

> thanks in Advance

> and Jo

[Guest guest]

Jo and ;

Hi again, my heart goes out to you, I feel your anxiety, this is a very

tough road to travel but it is do-able with support and good advise. " You

ask where do we start? " You started years ago, with loving your Mother. Just

keep on doing, one thing at a time. Don't over whelm yourself, it helps no

one. Remember to breath and smile.

My mother, Mable is responding extremely well to water therapy 3 times a

week. I wish everyone that has this condition would have the opportunity to

exercise in the water. My mother actually gets strength from drinking water.

Before she walks or even gets up she has a drink, while we are playing in

the water, walking or exercising. Water is magic for mom.

I have giving up the opportunity to be employed right now, because it is so

important for mother's quality of life, TO GET OUT and exercise. She has

always loved to swim, growing up next to a river in Hondo, NM. We are in the

pool at the YMCA for over an hour, I then scrub her well in the shower and

wash her hair. She loves birch oil for relief of pain, I massage on her back

and arms, lavender for relaxation. Then it is time to get her dressed. The

tight compression hose go on so much better if powder is used on her feet

and legs. A good time to do range of motion on her ankles. After she is

dressed we finnish off with a hair style to die for. I do my mother's hair 3

times a week and another sister does it on Sundays. Mother is the sharpest

looking woman in the Nursing Home. She is able to have long beautiful finger

nails, now that she doesn't do dishes. The aids are jealous of her nails,

and of course she loves bold colors. I have even bought decals for her

nails, real cool! Sometimes just getting outside and breathing fresh air

helps her feel so much better. I really believe the medical, physical,

spiritual and emotional all needs to be taken care of. Taking care of

Mother is a lot different than caring for a child, because Mother needs to

be an individual at all times. I have to do for her without over doing for

her, in thought or action. I sort of have to be invisible even though I'm

very there for her. I think the more I write the more I'm confusing myself,

so I'll quit for now.

God Bless and keep your chin up, but when it falls let us help lift it.

Relles always has some humor to share.

Ann->MN...taking care of Mom....on the " Old and the Dutiful "

From: stovall@...

Reply-To: shydrager

To: shydrager

Subject: just diagnosed - SDS

Date: Wed, 04 Jul 2001 22:05:13 -0000

Our mom was diagnosed with Parkinsons Plus three years ago at Duke

Medical. She has been going downhill since. Quality of life is very

poor and she is only 70 yrs.

She went into the hospital last week in pain and feeling awful. She

has a grade 4 urinary infection, potassium levels out the bottom and

had to have her gall bladder removed.

While she was ( is ) in the hospital her neurologist removed her from

her senemet ( sp ) to observe her. After two days he diagnosed her

with Shy Dragger. We had suspected this all along but have had a

difficult time opening eyes and ears.

Now that we have found this group -----Where do we start?? Assume we

know nothing and pls give us the basics of dealing with this

disease. Our goal is to improve her quality of life - somehow -

mentally and physically.

thanks in Advance

and Jo

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

and Jo, I am sorry you are here, but welcome. My mother Joyce was

diagnosed with PD, then with MSA 2 years after that (due to rapid

progression and poor response to drugs). She died in November from

complications at 71, about 2 years after the MSA diagnosis. Others have the

disease for over 20 years.

It is good that you caught the infection -- it is important to remember that

sudden declines usually signal an infection. Also, with this disease, one's

body temp. is often lower than normal, so what may not be a fever for most,

may well be one for someone with MSA.

How long did the doctor take to bring your mom off Sinemet? Taking someone

off these drugs too quickly can cause other problems.

It is important to exercise as much as possible, even range of motion

exercises. Also, if your mother has balance problems, watch out. My mother

insisted on walking on her own and the falls took a huge toll.

Stick with the list -- you will get information and support. I hope your

mother is feeling better, Debbie

just diagnosed - SDS

Our mom was diagnosed with Parkinsons Plus three years ago at Duke

Medical. She has been going downhill since. Quality of life is very

poor and she is only 70 yrs.

She went into the hospital last week in pain and feeling awful. She

has a grade 4 urinary infection, potassium levels out the bottom and

had to have her gall bladder removed.

While she was ( is ) in the hospital her neurologist removed her from

her senemet ( sp ) to observe her. After two days he diagnosed her

with Shy Dragger. We had suspected this all along but have had a

difficult time opening eyes and ears.

Now that we have found this group -----Where do we start?? Assume we

know nothing and pls give us the basics of dealing with this

disease. Our goal is to improve her quality of life - somehow -

mentally and physically.

thanks in Advance

and Jo

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

unsubscribe by sending a blank email to

swVF8ager-unsubscribe