Kate
New member
- Joined
- Jun 24, 2008
- Messages
- 7
- Reason
- Friend was DX
- Country
- US
- State
- wisconsin
- City
- Depere
My best friend was diagnosed last year with ALS. She and her husband had some bad experiences with the Doctors they came in contact with and decided to look outside for help. She has been seeing an Acupuncturist and a physical therapist. When I offered to go with her to an ALS support group she told me she didn't want to know what to expect. I have honored her wish, but now she is loosing her ability to swallow. Her ALS symptoms started with her speech, I have been told her ALS is starting from the top of her body and going down, instsead of with her limbs, like most symptoms. She can still walk, and write, but has been unable to talk for over 6 months. She is on a bunch of supplements, pills that she chokes down (literally) several times a day. She also has some atrophy of one side of her diaphragm, so her breathing is somewhat labored.
My question, where do I go for the kind of information, i.e. foods, mechanical help, that I can diplomatically suggest? I live in Wisconsin, she lives in Illinois, I only see her once a month. I feel so helpless, and i want to honor her wishes, but I am afraid she and her husband are not being realistic and I fear it will be a crisis before he reaches out to find help, and she will needlessly suffer in the meantime. If I could have some readily available sources when the time comes....
My question, where do I go for the kind of information, i.e. foods, mechanical help, that I can diplomatically suggest? I live in Wisconsin, she lives in Illinois, I only see her once a month. I feel so helpless, and i want to honor her wishes, but I am afraid she and her husband are not being realistic and I fear it will be a crisis before he reaches out to find help, and she will needlessly suffer in the meantime. If I could have some readily available sources when the time comes....