Pat from Framingham

[Guest guest]

Hi Pat,

I've never written directly, and post in spurts, but your email really

touched a chord. I'm the caregiver of my husband, Jeff. He's 37 and,

while he's still mobile, we deal with some of the same issues you

mentioned. I don't remember when I've gotten a full night's sleep! Last

night he woke up and his right arm was completely paralyzed. It was like a

limp piece of meat! It took me about 30 minutes of massage on his neck and

shoulder, and moving the arm back and forth before he started to get

feeling in it again. His sleep patterns are terrible. Last night he had

about 3 dream episodes where he just started talking and thrashing, or

laughing and twitching. And he has intermittently bad twitches and shakes

at night. Sometimes if I'm cuddled up to his back, his whole body will

shudder, like an outboard motor winding down. The urinary problems are

there too, though he'sonly had a handful of accidents. And then, of course

he's exhausted during the day. Last night he came home and feel in to a

DEEP sleep on the couch for about 30 minutes. If I hadn't announced

dinner, he probably would have slept for hours. Didn't hear the phone

ring, TV, kids, NOTHING!! Oh, he's had sleep study, and it came back

" inconclusive " They want to send him to one of these sleep and seizure

institutes where they can observe him for a few days. Jeff's very proud

also and doesn't want any " artificial " help, but when it gets to that time

who knows? Just wanted to let you know I sure understand some of what

you're experiencing. M.

Subject: Re: Update on Rob & Carol

Dear Carol and Rob:

I wish I could give you info to help you but sometimes

things get adjusted or we learn to handle them better. Bob has urinary

problems off and on. Right now he uses Depends " Mens Guards " . I think

they

changed the style because the new ones are not as good so I will have to

find

something else. The thing that bothers me the most is lack of sleep. Bob

wakes me when he has to urinate - I'm glad for that - but that means my

sleep

is disturbed. There was a time I used large Depends and he just went in

them. Why his incontinence changed I don't know. Things haven't really

gotten better they just changed. Pivoting him on to the commode is a

challenge. I'm glad I have the one with let-down arms. Bob also gets

fungus

around the top of the legs and I have to keep putting on Nystatin. If I

keep

him out of the Depends the fungus is better but then he has an accident.

It's like everything with Shy-Drager you learn to handle one thing and

another comes along. Bob says he does not want a catheter, Peg or any

artificial help. I don't want to remind him that he has a Pacemaker. I

don't know how he will feel further down the line if he has a real need for

more help. We'll take it one day at a time.

Bob seems to sleep a lot lately. I try to keep his mind

active. We had the Marathon on and the Red Sox-Yankees game on close by.

He

really just glanced at them occasionally. Later I played some tapes of

movies he likes but he just slept a lot. He was someone who had a million

interests and activities and it was never hard to get him involved. Once

in

a while a little spark returns when the grandchildren come by or some

friends

but mostly he is snoozing. In contrast my Mother who will soon be 98 was

of

course blessing the Sox and going on how good they are. Later she was

enjoying the Bruins and glad they are in the Playoffs.

She is always watching " Keeping up Appearances " , " Are You Being Served " , or

some other crazy shows. She laughs so hard she doesn't mind repeating them

because she misses so much because she is laughing. I even got her some

crazy tapes of " Benny Hill " . It's really wild here with us all on the 1st

floor - including 4 TVs so no one will miss a show. I was out in the yard

today it was so nice and with my Mom's TV blaring - I left Bob with a

Submarine Movie - the house I think was vibrating a little. It reminded me

of when the kids were Teenagers and different music was blaring from every

room. They play everything loud just like the kids did. Of course they

have

an excuse - age deafness.

Hope things improve with Rob and he can find some meds that

help.

When I get up at night I often think of the other

Shy-Drager

Caregivers and wondering if any are up and busy with their loved one.

Take care,

Pat from Framingham