Coping with ALS?
 

How do you cope with ALS on a daily basis?

the information you post here could really be helpful to some one...

Hi,
My name is Lisa and my husbands name is Gary.
Although , I know many of you here ..
There may be alot of people reading I have not yet met.
Gary was diagnosed with ALS in August of 1999, Our oldest who was 11 is now 20 and is attending college majoring in physcology Our youngest who was 17 months old is now 9 .
The hardest part of the disease to us was all the fears and desperation at the beginning and middle of the disease process.
I found though alot of our fears were worse than reality.
And Gary found he could learn to adapt to alot more than he ever dreamed of.
Speech is what my husband lost first , so a huge emphasis on adapting has been getting his speech equipment needs met as he progressed.
He currently uses a Neuroswitch as he has no controlable movement. He failed eyegaze trials although his vision is better than mine. But the Neuroswitch senses EMG sigmals from his cheek so he can type in synthesized voice to us, type on the internet, listen to his music, and surf his baseball and football sites.
We cope as a family , by trying to take one step at a time and staying on top of his overall health.
But, try to prepare a little ahead of time for the next challenge.
We try to live life as normally as possible, watch lots of comedies on TV and Dvd.
As laughter to us is often the best medicine. Lisa