Need suggestions.As an ALS patient, what sort of things occupy your time?

[Pearl]

Hi, I'm a friend of a CALs. As the disease progresses, my friend's husband (the PALS) finds himself now at home (on disability). He gets fatigued very easily and has been spending most of his time in his chair watching tv. Well...that's getting a little boring for him. I know that this transition will be difficult, but can anyone share their experience of how they dealt with the change from work to home and limited activity?

Does anyone have suggesions for what he CAN do? May I ask how some of you fill your days? Or what has become important to you?

Thanks for any insight.

[Al]

Does the man have access to a computer? I spend quite a bit of time here and doing other research and reading mail on another forum. There are live chat's for ALS patients he could join. Online poker sites, solitaire and other games can be played as well. AL.

[quadbliss]

See http://mikebougher.com

[CindyM]

Hello Pearl- You raise very good questions. I am still working but have wondered how I will spend long hours being idle. I was never one to sit around much. Al is right the computer is a Godsend. Some of my friends and family are starting to buy me books on tape. I love to read but books are getting too heavy to hold. And we are having people in more now. Right now I am still able to function as hostess but I am preparing them for the day when guests will have to bring pot luck and learn their way around the kitchen.

Let us know what solutions you discover. It will also be interesting to learn what others have discovered.

[quadbliss]

Cindy,

I don't know if you live in the US, but if you do, there is a federal blind and disabled library program (http://www.loc.gov/nls/index.html). The program is administered by your state library. They provide a tape player and a large selection of books on tape, all free via US mail. It requires a form be filled out by your doctor, then you are all set.

Mike

[CindyM]

Thanks Mike. I am not far form Boston, where we have lots of good hospitals and services. I am still awaiting DX but sure I at least won't get back my former abilities. Right after the New Year I am going to visit a place that recycles small tools for handicapped folks. I am looking for an easy way to open cans, some of those big tubes to put on pens and forks and so forth, and anything else that might apply! Have a good New Year, Mike and best wishes to you and your family!