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    #16
    Well I'm back now fighting fit.
    when i can think of something profound i will update this.

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      #17
      Good for you...if nothing else this is a good place to let off steam...among friends
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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        #18
        A while back the nhs couldn't find our nhs numbers. I did have them but it looks like the system wasn't working but eventually it did recognise us. We had registered with local GP surgery and shown our passports. Stephen had nhs health check and they wanted him back following week. I couldn't get him to the surgery so I was told if you can't get there they'll have to come to you. OK so phoned up told them the situation. A telephone appointment was agreed. Meantime SMs messages reminding me of 3pm appointment. So I took it that's near enough when they'd call. My phone showed a call at 11am and reception had left a message at 11.20 could i book another appointment. No Im not I waited on the phone 20 minutes trying to talk to them before.

        Then our mnd/nhs support contacted the surgery and they told her they didn't know who I was. Even though I'd done everything to be on their patient list and accepted. even had a chat with 2 of their doctors and got a prescription and have an appointment for September and the GP surgery that had my record's previously reassured me that my record's had been sent to plymouth. They said before they wouldn't put me down on my husband's record's as his carer.

        I'm hoping everything has been resolved as I shall have something to say on my next visit. I always wondered why we are called patients but I think it's the wrong spelling it should be patience.
        when i can think of something profound i will update this.

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          #19
          Originally posted by denise View Post
          ... I shall have something to say on my next visit.
          ... whilst dressed in a leopardskin bikini, a feather boa and thigh-high PVC stiletto boots - they'd be sure to remember you then. πŸ˜‹
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          ​

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            #20
            Got to love your imagination πŸ˜‰πŸ˜πŸ˜˜πŸ˜xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #21
              As it's a hospital visit, one could add elbow length gloves - white silk, black PVC or fishnet, take your pick.

              Doug x
              Diagnosed April 2017

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                #22
                Wow like your ideas. I'd definitely be able to make a statement dressed like that. They'd be gobsmacked before I even spoke. Just need a portable pole. 🀣

                Shopping yesterday new posh white trousers and makeup. My eyebrows look like eyebrows and not something out of join the dots.

                Think the only thigh high boots I'd ever get use from would be the wellies fishermen wear. When I had dogs they would have been perfect. Guess a bikini would have looked great with them. Think when ladies used to wear long gloves they really looked stylish. I have some lovely gloves but they are all far far far away. 😫
                when i can think of something profound i will update this.

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                  #23
                  denise Glad you had a nice day out yesterday Denise.

                  White trousers!! Now there's an accident waiting to happen πŸ₯΄ They might be transformed into a statement cat paw print design some day soon 😍 😘😘
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

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                    #24
                    You see that's when the waders will come in handy.
                    when i can think of something profound i will update this.

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                      #25
                      Originally posted by Doug Carpenter View Post
                      As it's a hospital visit, one could add elbow length gloves - white silk, black PVC or fishnet, take your pick.

                      Doug x
                      Its lovely to see you haven't changed Doug,
                      love and hugs to you
                      Debbie x

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                        #26
                        Thanks Debbie, much appreciated!

                        Hugs

                        Doug xx
                        Diagnosed April 2017

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