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Diagnosed 22nd December

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    Diagnosed 22nd December

    So I am glad to be on here and grateful for the support you guys will give me. I was diagnosed 22nd December with progressive bulbar motor neurone disease.

    I am a writer and god knows how my next books will get out there. But they are to do with life after death.

    I can hardly speak or swallow....... and that makes life difficult in the publicity driven world of publishing.

    thank you so much for letting me on here.... I am so grateful.




    #2
    Welcome home, we are brother and sister who's parents never met. 👍x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Hi Matthew, it’s such a shame. It started in August so I am 5 months in but diagnosed on the 22nd

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        #4
        Welcome to the Forum, Clare - 22nd December, eh? Worse Christmas present ever...

        Had you an opportunity to bank your voice? And, given you have issues swallowing, was the subject of a feeding tube raised with you?

        Love Ellie.
        ​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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          #5
          I was diagnosed back in May but my voice changed in January. Same diagnosis as you and currently eat with a feeding tube, cannot speak, swallow certain drinks, have bathroom issues and am a martyr to saliva. Just remember where go I is not where you go. 😁x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Hi Clare, welcome to the club. As Ellie said, it's a bit tough being diagnosed just before Christmas. You've done the difficult thing by posting your first post. Lots of useful advice and support here from a bunch of folk who understand your predicament precisely. A bit of humour as well, to lighten the gloom.
            Each day is made easier with a bit of humour.

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              #7
              Hello Clare
              sorry you’ve had to join our club, there is a lot to take in so early in diagnosis, but you will be supported by your new friends on here, and what’s buzzing around in you head, it’s all been in ours so we know how you are feeling, take your time and ask anything you like, someone will be able to help.
              better brush up on our grammar now , no more typos,
              shaun
              As long as there’s golf and beer I’m happy

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                #8
                Thank you all so much!

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                  #9
                  The feeding tube was mentioned.... in the first interview. But not when it was confirmed.

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                    #10
                    Welcome to our community forum Clare
                    Last edited by jd58; 9 January 2021, 13:40.

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                      #11
                      Hi Clare, welcome onboard the boat that nobody wants to travel on. As Ellie said what a lousy Christmas present to get. It really must have thrown you all over the place. Good luck with your book writing. I hope that you can continue.

                      About losing your voice. It sounded too late to bank your voice but if you have a sister or other family member that sounds much like you then they could do the voice banking for you. Alternatively there are some voices already on Predictable that you might like.

                      Take care,

                      Lynne
                      Last edited by Lynne K; 29 December 2020, 18:26.
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                      I'm staying positive and taking each day as it comes.

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                        #12
                        Hello and welcome Clare.

                        It’s very brave of you to come to the forum so soon but having found us you can be sure of support and advice.

                        Best wishes for 2021.
                        I’m going to do this even if it kills me!

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                          #13
                          Originally posted by ClareDunkel View Post
                          The feeding tube was mentioned.... in the first interview. But not when it was confirmed.
                          I don't want to overwhelm nor frighten you Clare, you're so recently diagnosed but, given your swallow is affected and the current hospital pressures, it is something to pursue through your MND Clinic or Speech and Language Therapist (SLT) - get your name on the list, so to speak.

                          Take care.
                          Love Ellie.
                          ​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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                            #14
                            Thank you Ellie, I will pursue that.

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                              #15
                              This site gives a very good overview of the pros and cons of having a feeding tube. Might seem a bit scary, but if you decide to go ahead, it's better to having it done earlier rather than later.

                              https://mytube.mymnd.org.uk/
                              Each day is made easier with a bit of humour.

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