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gilly

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Joined
Jul 24, 2006
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56
Country
US
State
NY
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New York City
hi everyone.
it's been quite a while since i checked in and i just wanted to say hello. my aunt is doing well considering it's been over a year since her diagnosis. her speech is almost fully impaired and her hands are starting to curl up a bit. ever heard or that? is that common? she emails and writes a lot of things she's trying to say on paper - i was wondering what sort of machines people use when they can't speak or write... how do they communicate? she's lost a lot of weight. refuses to talk about a feeding tube or bipap machine which scares us but we've been told to let her take things at her own pace. all that aside, she's in incredible spirits and staying very active. i'm so proud of her! she's such an inspiration.
also, if anyone is in the new york area, please check out alsa.org. you can join a walking team for this year's walk to d'feet ALS. i am a team captain of "patty cakes" for the long island walk! it's a great day and obviously supports a cause we're all interested in. spread the news. the more money we raise the better! last year they raised a million dollars for ALS research. this year we've got the new york islanders and applebees donating and sponsoring us. i've been volunteering for all sorts of projects run by the new york greater chapter for ALS. they're a wonderful bunch of people. ok, so please check out the site and see if it's something you'd like to support.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi gilly. Glad to hear your aunt is doing ok relatively speaking. Unfortunately curling hands are quite common as the tendons shrink with atrophy and wasting muscles. If she has an Occupational therapist they can get hand braces made to keep them straight longer. There are pictures of mine if you search under hand atrophy pictures above.
AL.
 
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