Seeking ALS Survivors of 5+ Years

Not open for further replies.


New member
Nov 5, 2007
Hi. I provide support to a friend of mine with ALS (now approaching the 5-year mark). We've been talking lately, and he'd really like to talk with anyone who has survived ALS for longer than 5 years. I do all his typing (in real time), so email is good, but the phone works too. He lives in Marin County, California, so if you live nearby, perhaps a face-to-face would work too. Really, any means of communication would be great and helpful.

Anyone out there willing to chat with him/me? Make a friend? Share their experiences?

Hi Dawn,

I have had ALS for over 9 years, and am still living a happy, fulfilling life. I live in Benicia, and would enjoy meeting with your friend. PM me and we can set it up. :-D

Ontario Canda


My husband has had ALS since 1999, the best way to comunicate with Gary is email as by phone would be too costly.. You are quite welcome to email and I will read to Gary and reply. Somedays are harder as Gary is in the full care of the disease, so my time is sometime limited, but if you have any questions just ask.
Thanks to both of you

I will talk with David and contact each of you via email to get the ball rolling.... I'm not sure what "PM" is. Sorry, I'm kind of dense when it comes to e-lingo. -Dawn
Dawn ..... welcome to the forum there are alot of helpfull people on this forum that can offer alot of information and support. PM is private message which you can sendt to another member. However, I believe that the forum has changed somewhat over that past little while and new members have to have posted a certain amount of posts before being able to send PM. I am certain perhaps Cindy or Al will be responding soon and they will be able to give you more information on PM.

Take care. Anne
Hi Dawn. Welcome to the site. Unfortunately we had to put in controls on when you are able to use the Private Messaging system. It's like email but you just have to click on a person's name and look for the send a private message to that person. I'll send Ontario Caregiver and Quadbliss your email that you registered with if that is ok with you and them. Let me know you three.
Thanks Al, thanks Anne

Al, yes, go ahead and do what you need to do to let us communicate. Thank you.
Not open for further replies.