meadowlarks-

Hey! Just wanted to say that my dad (who had ALS) made great use of that dragon speech software when he eventually lost mobility in his hands.

Hey wolfsuit! Not OP but I watched my dad's four year progression firsthand and I understand how difficult it is. Watching him start move from a walker, to a motorized chair, to a chair operated by tapping his head against two panels, to his eventual mutism was very very hard for me.

My father found that breathing exercises helped him stave off the complications related to swallowing, speaking, breathing, etc. Sorry I don't know any specifics. My father was very spiritual and into holistic medicine so he also meditated and seeped Chinese herbs (I remember hating how much they smelled!!).

Good luck man, you're in my thoughts! Feel free to message me too.

Edit: www.ccals.org/home.php This organization really helped my family with getting ahold of items like shower chairs, bed lifts, scooters, in-home nurse contacts, and hospice info! They were also very supportive emotionally for my family (their founder was close with my dad, came to his funeral). I've been giving them a shoutout in this charitable time of the ice bucket challenge. Definitely see what they can do for you, and if anyone is so inclined, donate!

Hey acarbajal! Thanks for doing this. My dad passed away from ALS three years ago after a four year fight. It has been pretty tough on me, especially since my mother doesn't talk about it and I have been left in the dark regarding the medical side of it. I guess what I'm trying to say is that I'm anxious that my father had familial ALS. I (19F) am wondering how you coped with knowing the odds of having this disease?

My dad's communication eventually tapered off as it became more difficult. We all just became more patient and worked on our listening skills because right before he stopped being able to speak, his speech was very labored and difficult to understand.

Thank you for replying! I might get tested. I might not - I don't think I know at this point what is best for me. Good luck with everything in the future - you have a brightness and light in you that will take you far :)