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Greetings! I'm not sure I have figured out how to use Instant

Messageing so bear with me. My sister has recently been diagnosed

with MSA and the nearest we can figure she has had symtoms for the

last 5 years. She doesn't do much now. My question is what can be

done for her and what can I do to make her more comfortable? What

should I say and what should I not say?

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Delia,

Exercise can help keep movement. Daily range of motion and speech

exercises do help. Speech and physical therapy can be paid for via

Medicare, even at your home.

There are also some medicines which help some symptoms, so talk to the

doctor about specific problems she is having. With MSA, you must treat

the symptoms and not the brain disorder.

I am sure your sister knows she has a problem and not telling her

anything, may be worse than telling her that she may only have a few

years to live. My wife knew everything the doctors told us and lived

with it for nearly twelve years. She had to do daily exercises for the

last 7 years of her life. You can honestly tell her that you do not

know how long she has, but that exercise may give her a few more years.

Take care, Bill Werre

deliame2002 wrote:

>Greetings! I'm not sure I have figured out how to use Instant

>Messageing so bear with me. My sister has recently been diagnosed

>with MSA and the nearest we can figure she has had symtoms for the

>last 5 years. She doesn't do much now. My question is what can be

>done for her and what can I do to make her more comfortable? What

>should I say and what should I not say?

>

>

>

>

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

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

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Hi, Welciome to the group. I'm not an M.D. but would like to offer some answers toyour questions.

You say that your sister "doesn't do much now". What can she do? What does she like to do? What would she like? I have, as part of my disease, a severe tremour in both hands, some lack of coordination, short trem memory loss, use a wheelchair to get around, and some other things. However, I still

like to tole paint and have made some devices that will ease the tremour in my hands. If I were you, I'd see what she would like to try or ask what she would like and go from there

You ask what can be done for her to make her more comfortable. Ask her, only she will knnow. She may need some medical devices such as, a wedge to lift her up so she won't lay flat in bed, footstools to elevate her feet, a wheelchair to get around. Just ask her, If she has trouble communicating, lately ther have been several messages about communication aids, or you can make your own using "flash cards", pencil and paper, etc.

As to what to say to her, talk about what is bothering her, what she likes, what she doesn't like. Let her talk about anything! Even her disease. Talk about the weather, or talk about how she is feeling. One stage in this whole process will be denial and anger. Let her vent that. Remember, this MSA affects lots of different areas of the brain and things will get affected. Mine may not be like hers, in fact, nobody's is exactly like anyone else's. However, there are simularities also.

This is the place to learn about MSA. Your neurologist may or may not know about it. I suggest you begin reading all you can about it. This is the place and there are lots of places on the Internet to find out information. If you can't find what you want to know, medicationns, movement, speech problems, inncontinence, etc, ask the group, you will get answers to your questions and/or be directed to a place where you can get answers. Then if your sister has a question, maybe you can answer it for her.

Learn all you can, ask questions, and keep your chin up.

If you need anything do not hesitate to ask me or call

Dr. Ray

-- Need to know

Greetings! I'm not sure I have figured out how to use Instant Messageing so bear with me. My sister has recently been diagnosed with MSA and the nearest we can figure she has had symtoms for the last 5 years. She doesn't do much now. My question is what can be done for her and what can I do to make her more comfortable? What should I say and what should I not say? If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

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