Re: newbeee - Harold

[Guest guest]

Harold,

Normal life expectancy for a woman is about 78 years old at this point. My

wife lived almost 12 years with MSA-C and the average seems to be about ten

years at this point. So your wife does have a good chance to live to her

seventies.

We had a woman on the list who was worried about how she was doing, and her

caregiver husband was killed by a drunk driver, so there are no guarantees in

life. With MSA, you MUST learn to live each day, one day at a time. Your

wife could plateau and go 3-5 years with no additional problems, OR she could

get pneumonia and die tomorrow. Last Thanksgiving my wife was up all day

Thanksgiving (after 12 years of MSA) and ate quite a bit of pureed food. The

next day I checked on her and changed the TV for her at 12:30 PM, asked her

if she wanted covers on her feet and she answered me fine. Forty minutes

later, my daughter found her dead. She went peacefully with no sound as I

was within hearing distance and was always tuned into any strange noise.

Questions you need to ask yourself before deciding what to tell her are:

Do you have all your legal paperwork up to date? Wills, powers of attorney,

living wills, medical power of attorney, wishes on using life saving

techniques like PEG's and trach tubes, funeral arrangements, etc. will be

important at the end. Now is the time to do all that for BOTH of you, as she

would never be able to handle it if something happened to you and it would

put a terrible strain on your kids if you have any. You can always tell her

you are doing that in order to save her problems if a drunk kills you.

If you have had a family doctor for some time, they would be a good person to

consult about telling her and what to tell her. If not, at least consult the

doctor who is in charge of her medicines with your concerns.

Do you have a pastor that you are comfortable with and knows your wife?

Talking to them about your concerns may be able to help.

How about family? They should be involved if at all possible. But only if

they can accept the disorder and live with it also. Most people can handle

this sort of thing better than they think, if you had told me fifteen years

ago that I would be a nurse and caregiver for over eight solid years, I would

have laughed at them. But when the time came, I was able to handle it.

Remember that you have almost 700 of us here with the same problems and

willing to give you help with things that have worked for us.

Is she getting physical therapy, sounds as if your doctor should order it for

her. Is she having any speech problems - if so speech therapy could also

help.

Take care, Bill Werre in Virginia

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haroldvwew wrote:

> My wife Emma has MSA_C. We were told to expect normal life

> expectancy. I began to wonder how she could last 20 years which

> might be normal for a 65 year old. I was having to change methods of

> dealing with her first walking with a cane, then a walker, now

> confined to a wheel chair, all with in a year or so period of time.

> Moving her from the wheel chair to the portable stool and back to the

> chair or to bed has been a challenge as she has less and less control

> of legs and feet. I got the message below and it rang a bell. I feel

> like I am just about out of changes that can be made, then another

> idea comes.

> Now I am finding out that If I read things correctly, she may have as

> few years as 3, having had it for about 3 years. I guess we really

> need to see some one who really knows about PD as their speciality to

> get a good prognosis. I have always been open with her about the

> disease but I have not told her of what I think the prognosis really

> is. The reason I haven't is that it may do more harm than good, but I

> am afraid someone may let it out. Any thoughts? Emma is taking an

> anti depressant now and it is working, but I truly don't know how I

> would handle it if she got as bad as she was before the Paxil. I know

> God would give me strength when it is needed but is not something I

> would look forward to.

> Harold