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    Hope today went well Susie and that you've got your car and Mark is back.

    Its really scary to be left alone when we rely on others. Its also frustrating when we first can't manage independently.

    Love and hugs to you πŸ€— 😘x


      Thanks all. Mark and the car got home safely. Wish I could still get into it πŸ˜•. Thursday went really well. A friend came round at lunchtime and made lunch, then we had a good old catch up during the afternoon which was great.
      I had so many calls on Wednesday and then Thursday morning from all my care providers. It turns out there's a MDT meeting (the first) about me tomorrow morning and I think they all wanted to be up to speed before attending. On Thursday morning the district nurse, who I've spoken to once on the phone previously, asked if she could come out to meet me before lunch. Perfect! Like everyone else involved in my care, she's lovely, stayed for a couple of hours and took me to the loo just before my friend arrived. Turns out, they're all professionals and have seen and done it all before πŸ˜‚, so letting her get me into the sling and onto the loo although a first for me, wasn't the end of the world. You can't afford to let your PMA and sense of humour stray too far when you have MND can you!
      Anyway, back on track, out and about this weekend while we still have the loan of a car (until Thursday) that we can get me into, so making the most of it and the glorious weather.
      Powered wheelchair arriving tomorrow, then just need to sort out the WAV. Hope I don't have to wait too long🀞. Life is looking up 😊.

      Hope you've all had a good weekend, sending Sunday evening hugs and thanks again xx


        I'm glad it worked out well Sue and Mark wasn't mopping up puddles as soon as he walked in the door πŸ˜‰

        Originally posted by Susie View Post
        Turns out, they're all professionals and have seen and done it all before
        And how! You're so right Sue - I remember when my community nurse helped me to the loo and I was so embarrassed for her and kept apologising for what I was putting her through, and she said she would rather do that anyday rather than shaving corns off a man's unwashed foot πŸ₯΄ She said she her next call was to do an enema and a catheter change, so I let her off lightly really 😊 xx

        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.



          Ellie Ah, that makes me feel better, 🚽 is a doddle then 😁xx


            I had to read the previous posts to figure out why susie had a toilet emoji.

            Think everything is embarrassing no matter what we've been through. Having babies having stitches things still get to us. Just the way we're made. Xxx
            when i can think of something profound i will update this.