Re: To Marci & All Re excessive sleepiness/Provigil? from Lin

December 17, 2006

Dear Marcie, Your message is so appreciated! I wrote about this problem a few

days ago re my mom, and had no idea so many of our LOs are experiencing it. My

mom is miserable with fatigue too. She knows she is exhausted and hates it. Her

blood work shows " normal, " but just on the low limits. So her MD says she should

just live with it as it's part of LBD and her Parkinson's. But those with these

diseases are highly sensitive, and almost anything the rest of us might handle

totally throws them off. It is wonderful your dad got your mom to the MD and the

problem was determined. Please let us know how the transfusions go and if they

help the fatigue. Re water with nutrients - I looked at a lot of them, and they

seem to involve only limited amounts of vitamins and minerals. Lots of fluid are

really vital, and a good vitamin tab also. Even having to urinate a lot, do try

to get her drinking! Re: keeping them awake. I am trying to find out about the

use of Provigil (modafinil), a

medication used in narcolepsy and now by a number of Parkinson's docs. It is a

stimulant, but does not work on the same brain centers as regular amphetamines.

I found one reference to its use in LBD (by Dr. Boeve on the LBD Assn web site,

but nowhere else. We could all learn from anyone who has info about this.

Marcie, I'll be keeping you, your mom and dad in my prayers. And do write back

when you can. Peace, Lin

Marci <willenbrinbrink@... wrote:

Hi all,

My Mom has also been extremely tired. She can barely stay awake to eat

and falls asleep for long periods of time. And she is miserable.

My dad finally took her to the doctor for blood work.

She is severely ANEMIC! They are giving her a blood

transfusion tomorrow, Monday.

I kept telling my dad that mom she wasn't drinking enough fluids;

she didn't want to because of the bathroom thing, something else

she can't control. My dad thought it was just part of the disease.

I encourage you to have your doctors test for anemia.

I thought I read something about water with nutrients? Anybody

with that information?

Is there any medication they can give to help keep them awake?

My mom does not want to be tired and she can barely move.

I will let you know how the blood transfusion works; they probably

will have to do several.

Marcie

Daughter to my best friend, my Mom, diagnosed in August, 2005 and rapidly

deteriorating.

Recommended Posts