vent

After managing my mom's ALS for 3 years, my advice is to stay strong and do not dwell. There are so many decisions that you absolutely ARE NOT going to get every one of them right. Yes, you might do something to hurt your PALS. I dozed off one evening and awoke early the next morning to...

My dad was diagnosed with ALS just over 3 years ago and those symptoms have been very slowly progressing. He was more recently diagnosed with FTD, and those symptoms are more of what we are seeing and his doctor's feel has been there before the ALS diagnosis was made. As my parents marriage is...

She was in multi-system failure, so we discontinued the vent. She died peacefully in her home like she wanted. I will use this post to get on my soapbox one last time concerning vents and trachs. Consider the option carefully and consult a pulmonologist that is connected to an ALS center in...

I don't write here much but am one that feels like I wouldn't be able to mentally get through this horrible progression of ALS without the people here. Mike is 47. He's my little brother, single with 2 young kids. I happen to be single with 2 grown children and live nearby so I am his main...

If you've read through roll call, you know my FIL is soon about to gain his angle wings from Cancer. Brian is doing better today than any other. DD and I were at the hospital to see him and he's not truly awake. I was able to facetime with our son, so Brian could see him. Brian's been...

Since many here strive for death on their own terms, I consider this a story of hope.

Hi everyone! I'm new here, but my dad was diagnosed with ALS in March '16, and had been showing symptoms for maybe six months prior. His progression seems to be moving pretty fast, as he is using the bipap and sip 'n puff now, and has some movement left in his lower left arm and head/neck, but...

Hi all! My mom was diagnosed with ALS in October of 2014. Through research, she discovered a link between ALS and Lyme. She got tested and sure enough has LYme. She started IV antibiotics and we thought would help. We were all hopeful until very recently. She is immobile from the neck down...

Hello, Since my dx I've been to three ALS Specialty Clinics. One was strictly for a second opinion and it was out of state. Two weeks ago the doctor I ended up with (since my diagnosis) told me that the level of pain I was experiencing did NOT happen in ALS and said "pain other than cramping...

Hello My mother passed away from ALS in April 2013. Ever since she passed I have always wondered if I will be next. There is no know history in the family of ALS. I am 49 years old and for the last week or a little over my body is twitching all over. First on my left arm and now my right leg...