i am scared

[dona jean]

you all have probably heard this time and time again....but i am scared.
the more i read about what my future will be like the more i don't want to know!
i don't know where to start to prepair myself and my family for what is to come down the road. any and all advice will be greatfully appreciated.
thanks.

[liz]

Research, research, research! Find out about every resource, every adaptive aid, every therapy and clinical trial. Information is power and can give reassurance that you can manage this disease instead of it managing you.

When I first came here just after I was diagnosed, I spent hours reading old threads. I learned terms and found out about adaptive aids and equipment I never even knew existed. Knowing this information enabled me to visualize how I was going to live with ALS so I have been able to make plans for the future accordingly.

Hang in there,

Liz

[Peg B]

Dear Liz,

Great information, great attitude. Thanks for the inspiration. Sincerely, Peg

[dona jean]

thanks liz

[vmd]

Liz:

Thank you for the information. Is there one document that you can identify that brings all the information together the ALS sufferer needs, including disability information, equipment, etc?

[Al]

Hi vmd. I don't think any such animal exists but this one has good information.
AL.

http://55jer.com/randysalsmanual.htm#COPING_WITH_ALS

[dona jean]

thanks for that link Al, i found it very informative.
dona

[Al]

No problem. Always glad to share information.
AL.