angry

  1. 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...
  2. N

    Without mum

    So im here. Its been 10 days since mum died. Went to work this week. We did the 3 day memorial and then the 9 day memorial. House filled with people. Yet im missing mum. Especially at nights and mornings. The smiles the goodmornings her phonecalls to work. Strange i didnt miss it all this time...
  3. K

    Exhausted & Feeling Guilty

    I am so exhausted. We have home health aids taking care of my PALS on weekdays as I still work full time. He has no use of his arms & legs. I get home about 5:15, just in time to help Steve use his urinal. Then I use the lift to get him out of his hospital bed & transfer him to his wheelchair so...
  4. Nuts

    Never thought I'd be here...

    FTD was my greatest fear early on. Then I thought we'd escaped it. Now...not so sure. Memory loss...cognitive impairment (slow processing)_ and now full blow hallucinations and bad behavior. I've been told at least once to find someplace else to live. Im not taking the mean remarks...
  5. J

    Jaw clicking, overweight, fasciculations and advise

    app. month ago or so my (right side) jaw started clicking when i open my mouth widely, but not when i chew. i have no problems with chewing or swalowing and i have powerfull bite. just like kind of joint appeadred suddenly. is it als connected, or...? this has been discussed many times, i...
  6. J

    Newbie with Rilutek

    yes, you read it right! its app 3,5 years after onset and 10 months after diagnose. my ALSFRS-R is 39, neuro count in on 29.6. he was angry with me after saying that i never used rilutek cause i didnt believed dx. all i got i have in my draw. now is 18th day of using rilutek. after 15 days i...
  7. R

    Bulbar Onset MND

    Hello there, I’m Karen, I’m 53. My problems started a while ago and I have been so confused, upset and angry with doctors since this has all began. I really don’t think I have MND, or maybe I’m in denial but it just doesn’t add up to me. I would really like your opinions and guidance, it would...
  8. I

    Husband newly diagnosed

    Hello Everyone, we’re having a really rough day today so I decided it’s time for me to reach out. My husband got his first diagnosis 5/21/18 and a second opinion confirmed it 6/14. He started noticing weakness in his arms on one side just after Thanksgiving. It then progressed to the other...
  9. K

    ALS - Marriage and divorce

    This will be my first time posting in this forum. I'm recently going through a divorce, and one of the main reason was that my in-laws didn't like that fact that my mom was an ALS patient. They were worried about the disease being passed down to my children (if I were to get pregnant), and they...
  10. N

    Hello from Greece.

    I really dont know how to begin what to write. My mum was diagnosed wiith ALS in April 2018 after 4 months of tests and visits to every doctor there is. Finally she was diagnosed in a University hospital. We are a veru close family. 5 kids 9 grandkids. We are in a state of shock. Mum was an...
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