Recent content by sleepy

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...

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.

MND Australia - MND clinical trials

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!

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.

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...

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.

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?

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

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.

I feel the same - pwc equals increased freedom and reduced fatigue and fall risks. I love mine.

Kim... First, hugs. Second, repeat after me... Not my monkeys, not my circus. Spend your money on what you want and your time on who you want. Next time she calls mutter "monkeys, circus" until she goes away. You don't have to, but I hope I made you laugh.

Hi all I am here and feeling grateful and optimistic. Hope you're all feeling it too

Hi everyone I'm here and feeling much better after my rant. Thanks to all for great support.

I don't know either but it doesn't sound good - what's the next step? Wait and see how it develops? That must be hard. Who is overseeing your care?