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decline

  1. J

    Please do not be too quick to say NO to possible ALS diagnosis

    About 3-4 years ago I came to this forum and asked the dreaded question "Do I have ALS". I had some fasciculations and cramping in my feet, balance issues, spasticity in both legs and slight speech changes. I was assured by members that my symptoms were NOT symptoms of ALS and I went merrily...
  2. K

    Thoughts on When to Get Hospice

    My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...
  3. E

    Breathing regular checks

    Hey everyone! Today my father had a breathing exam and, as it has been the case since he is testes, the results were perfect. In the past two years and a half since first measured, there has been no observable decline as measured by any indication of respiratory function. Given these results...
  4. J

    How are you?

    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...
  5. C

    Is this ALS?

    Hello everyone, in a 38 year old male. I worked out 3 - 4 times a week until the onset of fasiculations, which started 2 1/2 months ago. Since then, my time has been spent between doctor visits and a constant anxiety and worry. I try to workout, but it's down to maybe once a week because of the...
  6. K

    Optimal living situation- financially, emotionally, spiritually etc

    My pALS is my mom. She is newly diagnosed with bulbar onset ALS. As of now her mobility is not impacted too much, just her speech, swallowing and breathing. We have been discussing living arrangements as her mobility and breathing decline. Other pALS out there, what did you decide? Did you...
  7. JimInVA

    Shifting Sands...

    Our journey began at a Joe Bonamassa concert in November of 2012. With no advance warning, Darcey was suddenly having difficulty walking. Later that same night, she'd be unable to rise from a seated position. It was the beginning of a life phase that neither of us anticipated. For all of...
  8. B

    MIL Diagnosed

    My MIL started showing symptoms in June 2018. It started with back pain and slurred speech and progressed from there. In August she needed a cane to walk, and by September a walker. We had began seeking answers from her PCP and a Neurologist who couldn't give us any answers. The only thing...
  9. R

    Sharing the road

    My Pals started a downward spiral 30 days ago. Could no longer talk, appetite diminished, slept 14-15 hours at night and often a long nap in the afternoon. I asked twice if she wanted our granddaughters to come decorate for Christmas and never got a response. I had them cone out anyway and she...
  10. K

    Howdy, and Here's My Story

    Hello all, I've been combing the forums for a month or so, mostly because I'm not sure how to manoeuvre around here. I've been learning a LOT from forum, so many helpful people, and especially I've been feeling like I'm getting to know some of you, if not by actual name, then by user name...
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