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  1. sleepy

    ALS sucks

    Checking in, if anyone remembers me. My progression has been fast. Dx Jan 16, now no walking, almost unintelligible talking, typing with one finger. Feels like if I lose my typing I might lose myself completely. I tried eyegaze but it couldn't track my eyes through my glasses. My breathing and...
  2. sleepy

    what causes poor balance

    Upper motor neurone. I am upper motor neurone dominant. Happens in your head even if legs are still good. You need to be really careful of falls.
  3. sleepy

    I'm a lab rat, wish me luck

    MND Australia - MND clinical trials
  4. sleepy

    When you are falling and there's not a damn thing you can do to stop it.

    Nothing you can do to stop it - yep Can't believe I'm this helpless - yep Tears, for the shock and the disappointment, even if no physical damage - yep ALS sucks!
  5. sleepy

    Julie

    Saddened to hear of your family members responses at such a time. You can't change people but you can change the people you keep close to you. Time to take care of yourself now. My condolences for your loss.
  6. sleepy

    Travel

    I thought the combination of no cooking or cleaning up, and some use of kids club would be a break, but he doesn't do my shower and dressing so maybe it's daunting. I not sure about going without him. Would cals think that was a break? Or missing out on shared time? We never had a honeymoon...
  7. sleepy

    Travel

    Thx all. I 'floated' the idea of a cruise but he thinks he would be working non stop and it wouldn't be a break. Last thing I want is to make things harder. Guess my travelling days are done. I can't complain I have seen the sights and had delights on many foreign shores.
  8. sleepy

    Travel

    I know many of you travel... How? I get daily help to shower and dress. I can't see how travel away from those supports would be 'a break' for anyone. Wherever I go... I'm still inside my body. Where's the fun in that? Am I missing something? I used to love travel. Tell me how?
  9. sleepy

    Something I read but didn't listen to..

    Bulbar onset :( it's already not my voice.
  10. sleepy

    My wife has been diagnosed with MND-ALS + FTD - Part 3

    I think you'd be great. Not only have those industries changed... You've changed. And you have direct and relevant experience. You might also consider patient advocacy. Helping the inexperienced navigate the labarynth. Or maybe you feel that you've paid your dues.
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