Re: New to this group-Sandy

August 28, 2002

Welcome Sandy - I agree with all of the responses that have already come your

way. This is a most helpful site to be to get questions, vent your emotions

and just have some all-around fun " chatting " with folks around the world who

have the common bond of MSA or similar disease in their family.

My husband, Ned, has Shy-Drager. Noticeable symptoms prior to May 1987 (was

actually going to a doctor by '87). Slow deterioration with disability

retirement from his job (he was with ConRail) in early '90s. He has reached

a plateau and has been fairly stable the past several months, but he is

bedbound and has nurses with him while I am at work. I provide his care

evenings and nights. We have run the gamut from dizziness, to fainting, from

using a cane, to a 4-wheeled walker, to a wheelchair. We have encountered

vocal cord paralysis, urinary retention, and moved from intermittent

catheterization to a suprapubic catheter, and from mild constipation and

laxatives to daily manual removal of stool with glove and k-y. He has been

in a hospital bed for over 5 years, is on oxygen, has a suction machine by

his bedside an alternating air-pressure mattress on his bed. He is totally

dependent on others for his care and feeding (takes only liquids/pureed diet)

and is unable to talk and his arms/legs are stiff. In spite of all of this,

he is full of humor and love, His mind is totally intact (better than mine on

most days)! and he interacts with our children and grandchildren and is an

inspiration to all of us.

I don't mean for this to be a message of doom and gloom, but when I look back

and realize that he was given 4 or 5 years to live about 12 years ago, I

realize how lucky we are to still have his wisdom and love, and how

unpredictable this disease really is. I have told his story many time over

the past few years on this list, so I won't go into details, but if you think

I might be able to answer some questions for you, pose them on this list or

write to me privately and I'll be glad to share our experiences with you.

Again, welcome to the list. PS Where in Ohio do you have relatives? We live

near Columbus and have relatives in Cincinnati. Love & Prayers, Ned & Judy B.

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