how to help someone with ALS

[brishear]

My friend was diagnosed with ALS last year. He left to the mainland and just revisited the island this month. After seeing him tonight, it is a bit of a shock. After reading on this site, I now realize that each person is afflicted in different ways. My friend has lost his speech, and breathing is more difficult. His sister who lives here is, to put it lightly, frazzled. She feels like there is no support (there are no ALS groups here, and she keeps getting referred to Alzheimer support). Hopefully he will be able to make it out for another visit, and I want to do the best I can to get the best out of his time. Can anyone offer the best online support groups (other than this one) and any other advice I can pass on to his sister? Thank you in advance!

 

[indigosd]

Re: how to help

brishear, This is the BEST online support group that I have found! Do you have a MDA there? They have wonderful information on ALS. If you use the search feature on the top of the page you will find incredible information. Sorry about your friend :[

 

[Katie C]

Re: how to help

Just did a little checking, and while there's no ALSA chapter in the islands, MDA has a chapter and clinic in Honolulu. That might be the best place for her to start looking for help.

 

[MickeyMouse]

Thank you for reaching out on behalf of your friend and his sister, it is heartwarming to see.

I feel the very best support is provided by family. Anything you can do to support his family will support him.