HI Angela
I have quite a few suggestions for you.
1. First--yes on the foam larger eating utensils. They will be easier for her--but only temporary I'm afraid.
2. She needs range of motion exercises--and likely splints on her hands at night to keep them from curling--if not during the day as well) an occupational therapist can teach you to do the exercises to help her joints stay mobile as possible. For the hands, it's basically taking the fingers and curling them into a gentle fist. STOP at the first sign of discomfort. Make sure you do each hand at least 3 times daily. Make sure you OPEN the fist so each finger is opened between rotations. Or--press each finger (keeping it straight) to the palm and bring it back again to normal position--you can add that to the 'fist' exercise.
3. A multi-disciplinary clinic is like one-stop-shopping in ALS care. Here's the info for your area:
OhioHealth ALS Clinic
Westerville Medical Campus
300 Polaris Parkway, Suite 2151
Westerville, Ohio 43082
614-533-5613
Program Coordinator: Amy Minser
[email protected]
Directors:Kristin M. Johnson, DO & John C. Novak, MD
Section of ALS and Related Disorders
Cleveland Clinic
Neurological Institute
9500 Euclid Avenue, S90
Cleveland, OH 44195
Erik P. Pioro, M.D., Ph.D., FRCP(C)
216-444-5559
866-588-2264 (Toll-free)
www.clevelandclinic.org/neurology/treat/als.htm
University of Kentucky
KY Neurosciences Institute
Department of Neurology
740 South Limestone St.
Lexington, KY 40536-0284
Ed J. Kasarskis, MD, PhD
859-294-0452
Here is the Southern Ohio Chapter of the ALS Association:
http://webcsoh.alsa.org/site/PageServer?pagename=CSOH_homepage
4. That site also has a lot of useful information, including info on their loaner closet. Please give them a call! If her legs are not stable, she wont' be ale to use a can or walker very easily--and wheelchairs take a LONG time--they need ordered early-- but you may find a loaner.
Wish I could offer more