Re: Sandy Bierman

[Guest guest]

Sandy,

Our situation sounds so much like yours, thus I felt that I must respond.

If nothing else, I want you to know that there are others out here having to

deal with many of those same problems. My husband was diagnosed in 97 with

PD, with MSA in 98. Our biggest problem in the early days (we thought) was

the passing out when he stood up. That came because of the drop in blood

pressure that we did not even know about for sometime after the black out

spells began.

At first, we were able to continue a fairly steady life of family, travel,

and social events. Each day, now, seems to get a little harder. My husband

was 70 this spring. He began using a power wheel chair in October of 2001.

Our son and I did take him by plane to Orlando from TN in October of 2001 to

a reunion of the Navy men who served together on the same ship during the

Korean War. It had been almost 50 years since he had gone on the ship as a

very young man. The trip was difficult and tiring, but Speedy loved it.

The other men took our 39 year old son under their wing so he had a great

time as well. My husband's condition, only a few months later, would rule

that trip out today.

Size: My husband is a little smaller at 250 lbs. but similar in height. He

can move very little on his own. He can still feed himself at least part of

a meal. Eating makes him so tired!! He commented the other day that the

forks and spoons had gotten so heavy. I did not disagree. We did have a

Sure Hands Lift system installed in the rafters of our home in December.

With the lift we can move him from bed to shower, to commode, to power chair

with out hurting him or us.

My husband also sleeps often. He does not want to, but it just comes over

him.

Clothing is a problem. Is your husband a Veteran? You can get some

supplies through the VA if he is. One thing that we have done is when he is

in the bed, we put two large pads (like you might use for a child or adult

who wets the bed) on his bed and lay him on them with out any other clothing

on below his waist. Hopefully, that will let him air out some and not be

too moist in that tender area. We wash those pads often. Some times 3-5

times a day, depending upon what is happening with his body. His rectum

never completly closes so we have both urine and poop to clean up.

He also had many of those early symptoms that you mentioned. Honestly, no

one put it all together until after the MSA diagnosis.

I wish that I could give you more words of hope. I agree with you that the

people on the list have been most helpful. When my husband was first

diagnosed, we could only find one article that had been published at that

point, so when I found these people, I felt that I had a security blanket.

I would be happy to send you more specific info about Speedy (privately) if

you have an interest. Most people on the list have seen it before.

There are many people on the list that are much more knowledgeable than I.

Please know that if I can be of any help, I will be happy to do so.

My best wishes to you,

Marilyn in TN

[Guest guest]

Marilyn,

Thanks so much for your response. I need to keep reminding myself that I'm

not the only one facing this and it's comforting to know there is advise out

there from others who have 'been there'. Heaven knows not many doctors are

even aware of it. Tom's GP had never heard of it.

Take care,

Sandy