• The first pALS I met told me to remember “you’re not dying from ALS, you are living with ALS.”  Four years post diagnosis I am still enjoying life, not the same as if I didn’t have ALS, just differently.  I think it’s important to not allow your mind to take you to the ‘dark side’ but stay in the moment, focus on what you can do, not on what you can’t do.  I realize it’s difficult in the beginning but hopefully will eventually become easier.

    Research, research, research!  Find what other pALS have found helpful. I recently attended the ‘Healing ALS Conference’ in SLC, Utah, where pALS shared what has help them in some cases to halt or even reverse their symptoms.  I have been incorporating what I can afford into my regimen and find that I am less tired, less fasciculations, and more energy among other possible improvements.  I suppose some of it could be a placebo effect but I don’t care because I feel better and more hopeful!

     

    • Sheila, that is great advice for all of our members! Thank you for your positive attitude and inspiring comments.

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