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Diagnosed 22nd December

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    #16
    I'm still fully mobile but if I didn't have my PEG I wouldn't be. Stark but true. ๐Ÿ˜x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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      #17
      Matthew, you are amazing. I used to walk everyday in the Cotswolds and now I canโ€™t even get up the hill.
      I praise that stomach peg.... wish I could get mine done.
      so youโ€™re mobile - that must be great!

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        #18
        Clare welcome to the group no one wanted to join. Here you can ask whatever questions you want, shout, scream, cry and laugh. We have all done it. You will get all the help you need here.

        Take care and keep smiling

        Richard
        Richard

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          #19
          I will Richard!

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            #20
            Thank you for the kind words, I'm not sure everyone I've met would agree but that's kinda what I wanted to say. To stay sane focus on what you can do rather than what you can't anymore. The time we have left should be as bright and cheerful as possible. Stay Strong and Happy ๐Ÿ‘๐Ÿ˜x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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              #21
              Hi Claire

              A warm welcome to the forum from me. Well done for posting so soon after your diagnosis when everything seems so overwhelming.

              Take Care of yourself.
              Love and strength to you,
              Cebbiex

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                #22
                Hi Claire
                I think everyone else has said what I was going to say. Welcome anyway. We are all here for you.
                Denise xxx

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                  #23
                  Hi Claire, nice to meet you virtually the guys on here are an absolutely amazing group of people with good advise, and great personalities that will make you laugh too which is such a big help

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                    #24
                    Hi Clare

                    Welcome to the madhouse x everyone has said it all but use and abuse us and we will help you stay sane x

                    much love Sarah

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                      #25
                      Welcome Clare, to our community,
                      Diagnosed 2nd Jan 2020
                      Both arms/shoulders affected, left worse than right.
                      Progressive Muscular Atrophy suspected

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                        #26
                        Originally posted by ClareDunkel View Post
                        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.


                        Hi Claire, and welcome. I have PMA type of MND, so am probably not much use to you re information but always happy to give support. What I have discovered about this group is that there is always someone who has had a similar experience who is willing to give you the benefit of that. I was only diagnosed in September after having symptoms for at least 2 years, so I completely understand how you must feel at the moment.
                        Take care
                        Best Wishes Sue x

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                          #27
                          Thank you Sue! Iโ€™m grateful for all the help I can get!

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                            #28
                            Hello Clare. I've just joined forum. Like you I'm a writer. Half-day through a book but seems impossible that will finish now

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                              #29
                              Welcome Gordan.

                              Don't give up on finishing your book!!

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

                              โ€‹

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                                #30
                                Thank you so much for all your support - I will keep going with the book.
                                maybe that book, Gordon, will get written!

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