Re: We are all friends/members.

[Guest guest]

Dear MSA/SDS friends,

I do feel as though each of you are friends even though, I only know you

through the computer. I have met a few folks at meetings. I have learned

much about many of you from the list. I have also learned much about the

illness. When my husband and I first heard the words MSA/SDS from our

doctor, we could find very little written. We felt very alone. We know so

much more because of the information provided by others on this list. Each

of us, in our own way, teach others.

In some manner (me and my crazy computer skills), I was off of the list for

awhile and unable to even read the digest. I have finally gotten on again

and I sense that we may be experiencing some stress.

I want you to know that we (as a group) need all of you on the list. We

need and should be able to share our experiences, knowledge and expertise

with others. We all learn from each other. I try to speak only from

experiences in which my husband has been involved and me in support of him.

When I was first a member I questioned Bill (privately) about his

qualifications. He always wrote with such authority. He was very honest

and factual. Once I learned that he and I were much alike, caregivers

looking for help for our loved one, I was more than willing to hear what he

had to say. It is admirable that he is willing to contribute time to assist

the rest of us.

Someone commented that they would like to see more patients on the list and

maybe less caregivers. I think that is a great goal. In our home, the

caregiver must speak for the patient, as he is unable to use a computer to

speak for himself. In fact, we are almost to the point that he literally

can not speak for himself. Sometimes, I feel that in the real world of life

I am spinning my wheels trying to find help for him. Maybe that help does

not even exsist.

My husband is the Speedy in the e-mail address. He was always very

atheletic and loved by all. Now, he can barely move his arms enough to feed

himself. We use a lift anchored in the rafters of our home to be able to

move him from bed to chair and bath. Not a pleasant life.

Our (my family) lives are very busy. My husband's care takes most of my

time. Thus, sometimes when messages are very long, I honestly read briefly

to get the point and go on to other messages. I do not know whether that is

right or wrong, but I feel trapped between wanting to care for my husband

and wanting to know how the illness is effecting others.

I do know that sometimes person(s) can become overwhelmed with activities,

with life, with events. I have certainly been there myself. I encourage

each person on the list to do what you need to do for yourself and your

family. Even so, I do hope that each of you will continue to share your

experiences and your knowledge with each and all of us.

Respectfully,

Marilyn in Tennessee