life

Well, damn. My local neurologist, after two months of elimination tests, has now indicated likely NMD, with ALS being the most likely candidate. He basically kicked the can down the road and referred me to Dr. Pulley at Jacksonville Shands. We see him in late April for a second EMG and opinion...

So, here I am exactly one week out from my husband's death. It was really only after he actually passed that I have started to realize the absolute hellfire we went through together. There was beauty, love, and moments of joy for sure. I am very sure I never felt closer to or loved another...

Hi Everyone, my name is Juri. I have been living with ALS for 12 years now, and I had been gone from this site for about ten years, and during that period of time my FRS dropped from 23 to 1. I am on vent 24/7 (with the use of tracheotomy), I use an eye gaze computer for communication, and I...

How I hate that question now. It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging...

Does anyone have trouble with rectal burning made worse when sitting in the power chair? Multiple cushion combinations have been tried and every over the counter remedy has been tried. Prescription level lidocaine and pain relievers including Norco. I'm currently on gabapentin and Lyrica in...

Dear all. I've been caught into a depression spiral lately. I'm quite stable symptomwise as for now but I'm taking a heavy beating mentally. The most challenging moments are dusk and mornings just after waking up. There creep the worst thoughts of any day: anger, 'why me', mediations about my...

I am a 28 year old white male. After playing basketball 5 months ago, I developed severe pain in between my traps (more towards the right), and it hurt to turn my head to the right. Shortly thereafter, I developed numbness in my index and middle finger (aware these aren't ALS symptoms, but bare...

First off I’d like to say thank you for the recent acceptance into the community, I have so much respect for all of you who are fighting this terrible disease. I want to start out by saying that I am a 26 year old male who has been healthy relatively my entire life. Lately I have been having...

Hi Megan. All my life I’ve been pretty healthy and pretty happy but the last two months have have some health issues but I don’t have any answers to. As a new I’m Fearing the worst. My symptoms or arm weakness that sort of comes and goes so I’m sure that’s from anxiety, my right leg just...

Hello Everyone, I've been all over the website now for a while and have read a wealth of information that I have found useful as I negotiate my journey . So a big Thank You to all of the contributors that have taken the time post . Your experiences and knowledge have already helped me as I...