Positive ALS Support Group Experience

[ralsip]

I was recently diagnosed with ALS and am 42. I went to my first ALS support group in my hometown last night and met many wonderful people whose lives have been affected or touched by ALS. I was a little nervous about attending but I am so glad I did. I was the second person there and met a wonderful man who was diagnosed with ALS 19 years ago. He was in a power chair but could still move his hands and torso and talk very well. I realize he may not be the norm and the odds of my progression being as slow as his may be small, but as I've often thought about this since being diagnosed, the odds of me getting this disease were pretty small to begin with so hopefully my 'luck' holds and I can beat the odds again on the average life span. I was also touched by the fact many in the room had lost family members to this disease and were there both to help themselves but also help others affected. Thought I would share this very positive experience.

 

[FSHolbrook]

Yes support groups are great. I am very glad that you had such a good experience. We found the same thing. Thank you for sharing your experience.
Rick

 

[HeyDonnaDonna]

Positive vides heading your way!

 

[Nuts]

Thank you for posting this. I think meeting someone who can still talk and has any movement after 19 years would encourage any of us. I can see that fearing the worst robs us of today.