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    New to the site

    Hi everyone
    I've just been diagnosed last Sunday with als and very concerned, but I'm sure i can find plenty of advice here, many thanks for allowing me in and thanks in advance for any help.

    #2
    Welcome to the forum

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      #3
      Hello Simon, sorry you’ve had to join our club, your head is probably all other place at the moment , we’ve all been there, shout if you need help/advice or just a damn good rant
      shaun
      As long as there’s golf and beer I’m happy

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        #4
        Hi Simon and a warm welcome to you.

        Yep, sure is a lot to get your head around 😯 It can be overwhelming in the early days, so take bite sized pieces until you're ready for more. It does get easier, or maybe you just get used to it.

        Be kind to yourself.

        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
          Welcome to the club, Simon. Feel free to ask anything you like. Someone will have ideas or opinions.
          Each day is made easier with a bit of humour.

          Comment


            #6
            Hi everyone, thanks for your warm and advice, my symptoms started in my left hand and left forearm with wastage and weakness, I also can feel fluctuations in my right forearm, I also have tension between my shoulders not sure if that is just sleeping rough at the moment, I have to go back in jan 19th for a chat with a consultant and go from there, it was only three weeks ago I was watching a programme on a rugby player who contracted it, its a terrible disease and I'm sure you can all relate to how im feeling sorry for the rant everyone 🤞

            Comment


              #7
              Hi Simon,
              hopefully your consultant can you a bit more info, unfortunately we are all different, there is no set routine or progression , just similarities, but you can ask here if you are worried,

              The twitching is quite common, some people hate them, I’ve learnt to ignore them in fact I quite like them, it tickles. there is medication for it but it does have side effects
              if you hands and arms are your main problem it could effect your shoulder as well. ALS works quite randomly.
              There are no daft questions on here
              everything is discussed on here, from garden gnomes to toilet problems
              shaun
              As long as there’s golf and beer I’m happy

              Comment


                #8
                Cheers shaun, and I'm sure I'm not going anywhere soon but everyday I'll enjoy not as its my last but as its my 1st 🙏👍

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                  #9
                  Hello Simon and welcome to the forum.

                  You can take inspiration from Rob Burrow and Doddie Weir who like us are fighting MND with spirit and dignity. Stay positive and it will help you cope with the challenges.

                  Barry
                  I’m going to do this even if it kills me!

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                    #10
                    A warm welcome Simon. Good luck with your consultation on 19th Jan. Take care, Lynne
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                    I'm staying positive and taking each day as it comes.

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                      #11
                      Hi Simon
                      nice to meet you.
                      we're a nice bunch so I hope you will feel at home.
                      love and hugs Denise xxx

                      Comment


                        #12
                        Thanking you all for all your support its very comforting now, its weird really knowing the inevitable outcome, it may seem strange too say but I'm a lot better place than some people, my family are been brilliant with this x

                        Comment


                          #13
                          Originally posted by Simonchip View Post
                          ... my family are been brilliant with this
                          That makes a huge difference to everything, Simon. At the risk of emulating Phil Mitchell, family is everything when the chips are down.

                          ​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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