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    The day has now come to see head neuro at Royal free tomorrow for his diagnosis I'm numb to it all right now. At least it won't be a shock when he says 'I'm sorry....... or he may just jump right in and say it. In the bath having a cry and trying to have a sip of wine. My husband said to snap me back that if I carry on crying he will take my wine. Needless to say I stopped crying pronto

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      Hairbsb well deserved bath and wine then. I don't think anything can soften the blow. Thoughts are with you x
      Diagnosed May 2021 bulbar onset als.

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        Hairbsb will think of you tomorrow, all the best xx
        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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          Bless your cottons everyone. Xx. You have all been in this position. At the very least it won't be a shock
          Last edited by Hairbsb; 16 May 2022, 18:12.

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            shelly21 how was your get away?

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              We are still away. Its been good. Lots of reading & a few hrs of sunshine 🌞 x
              Diagnosed May 2021 bulbar onset als.

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                shelly21 are you abroad? Hope you are getting a tan x enjoy

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                  Hairbsb no only burnham lol. Friends got a place there. x
                  Diagnosed May 2021 bulbar onset als.

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                    shelly21 enjoy it all xxx

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                      Hairbsb

                      Thinking of you tomorrow.
                      Sending hugs and positive thoughts. I hope it goes as well as it can do. 🤗🤗 xx
                      Diagnosed 3rd November 2021 Bulbar Onset

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                        GillB I'll take the hug now xxxx

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                          Will be thinking about you tomorrow Hairbsb​​​​​​. Hopefully you'll get access to support following the meeting.

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                            Morning troops!
                            Big day today. My WAV van arrives this morning (squee!), but then I have 2 back-to-back appointments with hospital respiratory folks to assess my breathing which will help them decide if they want me to have a PEG fitted (although I can't see how those are connected?)
                            Hi, I'm Eddie.
                            Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                            Still walking and talking, and wondering what the future will bring.

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                              WheelsOfSteel morning. I think its a matter of timing re peg being fitted and respiratory decline. I had mine done on a day unit with just the spray freeze in my throat and local anaesthetic.If respiratory is in decline it means a few days stay in hospital and more monitoring. Hope all goes well x
                              Last edited by shelly21; 17 May 2022, 09:30.
                              Diagnosed May 2021 bulbar onset als.

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                                Morning everyone. 😘💕
                                when i can think of something profound i will update this.

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