Introduction and Coping as a new care giver

[Guest guest]

Marty:

In addition to the other comments I have seen - all of which were right on

the money, I suggest you get an Occupational Therapist in to evaluate your

living conditions and task behavior from the stand point of safety for your

wife. You will find the OT will offer many valuable suggestions and/or

recommendations from more than one perspective. Terry and I had this done

and it was an big help. Medicare will pay for it if it is ordered by an

MD. Terry has MSA/SND and has been showing the effects for quite some time.

One thing to keep in mind: Unfortunately, there is no solution for the MSA

problem. One must simply learn to mange the symptoms. You will get a lot

of help on this score on this list.

Message: 2

Date: Sat, 08 Jun 2002 22:57:25 -0400

Subject: Introduction and Coping as a new care giver

Hello:

Let me introduce myself: I am Marty Siegel.

I have posted once or twice on this list but wish to ask for some general

info to help me in my current problems.

My wife has some sort of sporadic ataxia, perhaps OPCA and maybe MSA but

she has not been clearly told this.

Until about 8 months ago her problems while bothersome did not seriously

affect our life style. My own personal medical problems seemed more

worrisome (advanced prostate cancer) but in truth our life styles were not

seriously affected.

Well that was then. Now her condition which was deteriorating over the past

years (she has had some problem for seven years) has passed a threshold. IN

fact she can hardly walk. We bought a four wheeled walker for he last

December and it has become a necessity and in fact may no longer be enough.

I find that I am being thrust into the role of a caretaker when I am not

worrying about my own problems. I see that there are a number of you who

have gotten into this role which I find very painful. It hurts me to see

her struggle to do simple things like getting into or out of a car or even

sit down on a dining room chair. I feel helpless in knowing that there is

nothing I can do and that her problems are only getting worse.

We are both about 60 and are trying to reevaluate our lives to some extent.

She works (or has been working) as a college professor at a community

college. She had to take a leave of absence after fracturing her shoulder

this past March due to a fall, but is hoping to go back.Its not clear she

will be able to however. I am also employed and wonder if I should take

early retirement so we can be together.

IN a sense I am not sure what I am asking any of you but I am truly pained

by my (our ) situation and find it hard to get people to speak to about it.

Most of our friends do not know what to say or are appalled at what has

happened. I do use other support groups/people for my cancer problems but

her situation is quite something else for me. She is not one to reach out

to others and I feel really burdened at times by all that is happening now.

I am wondering how others have dealt with such difficulties at least as

care givers or perhaps more.

Thanks for listening,

Marty Siegel

Sennewald Charlottesville, Virginia