life

  1. I

    Very Fast Progression

    I was originally diagnosed with progressive bulbar palsy in January of 2018. At that time we were told that there was an excellent possibility of having several years before things really became troublesome. In April 2018 I had a PEG put in and speaking was no longer a possibility. My legs...
  2. C

    update on me

    Hi everyone, I haven't posted in a while and thought I would come on and give you a life update. Things had been going really well for me and my family. I went back to school for my Masters in Education and in general starting taking care of myself. Well long story short, I went in for my...
  3. G

    Father had Als concerned I do too

    Hello everyone, just want to say I am a firm believer of Jesus. So my symptoms started as having a hard time taking a deep breath and gasping for air. I went to the ER they took a chest xray and said it was asthma, they prescribed me a 6 day supply of steroids and sent me on my way. I took the...
  4. chally

    Chally Erb flies free

    Chally’s spirit left his body as he slept in the early morning hours of Wednesday April 3rd. He continued to live his life to the fullest despite ALS wrecking his body bit by bit. This forum and all of you were so important to him. He talked about this community of friends every day. He was...
  5. P

    Questions

    Hello everyone thank you for reading this and I appreciate all the responses. Back in October i really honed in on my twitches, as in I googled. I’ve always had my twitches but after googling of course my head was down in a spiral. I’ve seen 3 PCP at my universal hospital and they all tested...
  6. P

    Questions

    Hello everyone thank you for reading this and I appreciate all the responses. Back in October i really honed in on my twitches, as in I googled. I’ve always had my twitches but after googling of course my head was down in a spiral. I’ve seen 3 PCP at my universal hospital and they all tested...
  7. M

    EMG in the morning

    I’m having an EMG tomorrow in Houston. I’m obviously scared. 8 months ago I started having tight pain in hips, 2 months later mid back pain when standing gets worse as day goes on. 4 weeks ago legs start twitching all under skin feels weird. Mood has been depressed I’ve never felt like this in...
  8. K

    Club membership at hand

    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...
  9. Lkaibel

    The Next Part of the Journey

    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...
  10. S

    An intoduction myself

    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...
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