Re: LALouise/dementia update

June 16, 2002

Louise

Hope you had a good day with sons and Jan got some smiles from all. Did

you also get the pretty day I sent? We have had 3 in a row. Something

is going to happen.

The latest in Picks is about as far as the latest in MSA. They are

leaning toward more genetic, at least 50%. That's not what I wanted to

hear!! The diagnosis rate is going up. It is becoming easier to

distinguish between it and Alzheimer's now. One of the biggest things

is that they are really cautious about using Alzheimer's meds because it

seems to make things worse for most but not all. Imagine that.

They other thing is that they are finding once FTD sets in there seems

to be an increased rate of other diseases setting in such as PD and ALS

type diseases. Wow, that should come as no surprise to you. They are

beginning to do a little more on these lines but many of the research

areas want to have the patients there to see so Mother as well as your

Jan are out in the cold. I wouldn't transport mother 15 miles much less

several hundred.

I'll send new information on down to you but it is pretty slim for now.

Are you going to donate Jan's brain for research? Mother's is going to

Harvard. All paperwork is done. She would be tickled to death if she

understood that she has been accepted by Harvard.

We have finally been able to regulate her meds so that I can go to visit

with her and she is glad to see me and able to visit. What she says is

gibberish but she smiles and hugs me. Something she hasn't done for

many years. The nursing home staff are just wonderful with her and she

seems happy to be there except for not being able to get out and walk.

They do take her outside when they can but can't turn her loose to walk

down the street. I still can't take her outside because she refuses to

come back in but she will go with the nurses.

I'll send some web sites and info

Hope you have had some sleep

Sally in KS

Where the wheat fields are waving golden grain

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