1. R

    Spoke with a doctor

    I spoke on the phone with a familiar doctor, who didn't seem very concerned after I explained her everything. She didn't even really comment on it other than that she thinks that it's probably nothing and not a condition of any kind. However I've still been feeling super anxious. I read a few...
  2. C

    Anyone have stomach twitching and shortness of breath?

    My Dad recently has been having an increase in twitching in his stomach as well as feeling like he can’t breath out fully. It’s only been happening the last two days and last week he was at the ALS clinic for his 3 month check up and they said he had no progression. Although they didn’t do a...
  3. S

    Barely Used Tobii Dynavox I-15+ for sale with compass and gaze

    Selling my dad's barely used Tobii Dynavox as he recently passed away. It is the I-15+ with compass software and gaze communication, and also includes the keyboard, a wheelchair mount, and the carrying case as well as the manual and receipt (it was approx $16,000 brand new). Please contact me...
  4. T

    Help! Strength: Conserve or Use It or Lose It?

    My Dad was diagnosed in Dec. 2017, with limb onset, starting with his hands / arms. Yesterday evening, he was unable to stand from his lift chair for the first time. My husband and I drove over and were able to get him out of it with the lift, (after a youtube troubleshooting video. It was...
  5. K


    Hi there. My dad was diagnosed this past March and is on rilutek as well as he is taking edaravone. I am interested in where I can get rch4. I live in Toronto, Ontario, Canada Thanks for all your help Karen
  6. F

    Dad died

    Doubt anyone reads this things. Just wanted to mention my Dad passed. Came to this forum a few times for a help and it was much appreciated. His ALS moved so quickly we were unable to get him any of the benefits he deserved for being a veteran. I tried my best for my Dad. My heart goes out to...
  7. C

    Limp onset with possible breathing problem?

    Limb onset with possible breathing problem? my Dad had a hard night last night. He explained it to me as he woke up with twitching in his rib cage and back and shortly after had shortness of breathe. He says he feels today like it’s hard to take a full deep breathe. A side note is that...
  8. M

    Question about NIPPV machine

    My dad has respiratory onset ALS diagnosed in May 2017, he still has full use of his hands and his speech and swallow are only minimally affected but he is really really weak can only walk assisted for 2 or 3 steps so he has a power wheelchair for getting around. At first he would only need...
  9. wishmobbing

    We'll meet at the bar

    Thought about posting this in the religious section but I feel more comfortable doing my ruminations in a loud bar with a friend next to and a drink in front of me. Even through the passing of my boyfriend my world view is unshook happy nihilism. In my opinion we only have the one life and...
  10. C

    Birthdays and celebrations

    So today would have been my dad's 71st birthday. I woke up just fine. I thought to myself, okay you got this. As the day wears on I am fighting back the tears. I remember last year on his birthday he cried so bad when we sang to him. He knew it would be his last. He knew!!! Just when I...