falling asleep

June 20, 2002

Sam seems to be more alert in the a.m. He started provigil in the a.m

after falling asleep at the breakfast table, a month or so ago, he started

taking it at lunch also. Now, the last couple of months he is falling

asleep at dinner, (after snoozing the afternoon away). He is extremely

difficult to awaken--I grab his arm, I yell at him, and finally feed

him--he opens his mouth for that, and then we go through the torture of

trying to get him in bed. I need to refine my techniques, and that poor

guy is my guinea pig. Is this a normal thing? His eyes have rolled back

in his head, but I guess people do that when they are falling asleep. He

can't seem to get out of bed now, and has his breakfast in bed in the a.m..

Part of my problem is the transfer.. He hangs on for dear life to whatever

I am taking him FROM so we have many problems that way. Of course, he

doesn't have a lot of confidence in my moving him, and for good reason. I

have the hoyer lift, and wasn't able to get him off the floor with

it. Just tell me, someone out there, yes, Lou, you will get better at

all these things. We have therapists coming to the house and they have

been very helpful with techniques, but sometimes things come up that are a

little different and then I am at sea. And just think, less than 2 weeks

ago he walked around a long block with his pushcart without

stopping. We're learning a lot, aren't we?

The neurologist says we are doing all the right things. Incidentally, he

did his residency at Vanderbilt under Dr. on. We are most

fortunate. Thanks to all.

June 20, 2002

Lou,

How is Sam blood pressure? Are you sure he's asleep and not passed out?

Try checking his blood pressure when he has one of these " sleepy spells. "

Fatigue is part of the illness, but this sounds excessive and awfully

sudden. If you've ruled out infection, be sure you've looked at blood

pressure too.

I don't have experience with the hoyer lift because we aren't there yet, but

as with anything else, I'm sure you'll get better at it as you use it more.

Hang in there, we're all here for you.

Carol & Rob

Lexington, MA

falling asleep

> Sam seems to be more alert in the a.m. He started provigil in the a.m

> after falling asleep at the breakfast table, a month or so ago, he started

> taking it at lunch also. Now, the last couple of months he is falling

> asleep at dinner, (after snoozing the afternoon away). He is extremely

> difficult to awaken--I grab his arm, I yell at him, and finally feed

> him--he opens his mouth for that, and then we go through the torture of

> trying to get him in bed. I need to refine my techniques, and that poor

> guy is my guinea pig. Is this a normal thing? His eyes have rolled back

> in his head, but I guess people do that when they are falling asleep. He

> can't seem to get out of bed now, and has his breakfast in bed in the

a.m..

>

> Part of my problem is the transfer.. He hangs on for dear life to

whatever

> I am taking him FROM so we have many problems that way. Of course, he

> doesn't have a lot of confidence in my moving him, and for good reason. I

> have the hoyer lift, and wasn't able to get him off the floor with

> it. Just tell me, someone out there, yes, Lou, you will get better

at

> all these things. We have therapists coming to the house and they have

> been very helpful with techniques, but sometimes things come up that are a

> little different and then I am at sea. And just think, less than 2 weeks

> ago he walked around a long block with his pushcart without

> stopping. We're learning a lot, aren't we?

>

> The neurologist says we are doing all the right things. Incidentally, he

> did his residency at Vanderbilt under Dr. on. We are most

> fortunate. Thanks to all.

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

June 20, 2002

Lou,

Yes, you wll get better at these caregiving tasks. No one (including my mom)

would have ever guessed that I could do everything I learned to do for

Charlotte. Ask the Barbara's (Selleck and ) - we ALL had to find ways of

coping with the effects of brain disorders. Yes it seems overpowering at times

ask current caregivers like Louise and Terri. BUT you can learn to cope. Yes,

the patient will have to suffer through the guinea pig stage, who else will

take care of them if we don't? Certainly not the politicians who claim to have

" family values " and are cutting funds for PT and ST while raising AIDS research

and care funds by a $1.1 Billion for next year. You are the one who cares

enough to do the very best.

Tell the therapists about the problem with getting Sam up off the floor with

the Hoyer lift. They can probably help you find a sling that will work. You

can get him onto the sling on the floor the same as on the bed. The lift may

not go down enough to get him up and you may need a few links of strong chain

to reach. If that won't get him high enough, set him on a beach chair or

something low, then take the chain extension out and lift him directly. There

are ways to do it, have the therapists teach you. Also do the exercises with

the therapists, your insurance will cut you off before long and he needs the

exercises.

HOWEVER, you must learn. You mention that he has gone downhill in just two

weeks. He is tired, difficult to wake and easily fatigued now. THAT is a sign

of infection, which should be checked out immediately. Temperature is not a

sure sign of infection in MSA patients as they have usually lost autonomic

control and don't always respond " normally " . But the odds are that he does

have some sort of infection as MSA patients do not " normally " go downhill that

fast without infection. Ask anyone on the list about infection, we have all

faced it often.

Hang in there, I learned much over the 12 years Charlotte had MSA.

Take care, Bill Werre

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lou Reynolds wrote: