Announcement

Collapse
No announcement yet.

Hi everyone.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Hi everyone.

    My name is David, never in my wildest dreams did I expect to be contributing to your forum.
    I was diagnosed with ALS/MND on the 8th of December last year.
    I knew something wasn't right when I realised I was sometimes starting to slur words back in October and shortly after I found I could not walk as far as I was doing before. Following an EMG test on the 10th of December, my diagnosis was confirmed.
    I asked my neurologist for a prognosis but he declined and said that everyone is different and it was impossible to predict how it would develop.
    I have been on Riluzole for ten days now, with no apparent side effects.
    After reading some of your posts, I realise that I am one of the lucky ones .....for now anyway.
    I don't know how some of you guys cope, I take my hat off to you, I am sure I could not be as strong.

    #2
    Welcome David.

    Originally posted by powdav View Post
    never in my wildest dreams did I expect to be contributing to your forum.
    None of us did and it's your forum now too 😉

    Love Ellie.

    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
    .

    Comment


      #3
      Hello David welcome to the forum. You are right there are many many amazing people on here. By taking the time to put your post on you’ve already shown your strength.

      Comment


        #4
        Welcome to our community forum😊

        Comment


          #5
          Originally posted by powdav View Post

          ........

          I don't know how some of you guys cope, I take my hat off to you, I am sure I could not be as strong.

          Welcome to the forum David. You will be as strong, you may surprise yourself. You've made the difficult first post. That's a good start.
          Each day is made easier with a bit of humour.

          Comment


            #6
            Welcome Dave ,
            Coping ... acceptance is key, then battle it as it develops,
            prognosis is very difficult as we are all different , mine was ‘5 to 10, maybe longer, maybe shorter, hopefully longer’
            well done for posting so early
            s.
            As long as there’s golf and beer I’m happy

            Comment


              #7
              Welcome David. Like you I never thought I would get news like this.
              I have lived a very active life, until now, but learning to cope. I just accept what I have, but find it difficult to allow my wife to live with it, as it is not fair on her.
              It seems everyone's symptoms and outcomes are different, and like you, I feel I am luckier than some on here.
              Diagnosed 2nd Jan 2020
              Both arms/shoulders affected, left worse than right.
              Progressive Muscular Atrophy suspected

              Comment


                #8
                Welcome David.

                Your consultant was wise to not define the prognosis as some are more blunt. You will find friendship here along with advice about coping.

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

                Comment


                  #9
                  Welcome to the madhouse David

                  When I was first diagnosed I took the line of I'm the same as yesterday but now it has a name.

                  You will find your strength but reach out if it overwhelms you. We have all walked in your shoes and can help however trivial or massive the problem

                  Stay safe and strong x Sarah xx

                  Comment


                    #10
                    A warm welcome to the forum David.

                    I am so sorry for your diagnosis. Its such a shock to hear the words so well done for posting on here so soon. Its a good place for friendship, support and advice from people who really understand.

                    Take care of yourself,
                    Love Debbie x

                    Comment


                      #11
                      Hi David and welcome to our family. Together anything is possible. 😁x
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                      Comment


                        #12
                        Hello David. I was reminded of old Monty Python sketch - no one expects the Spanish Inquisition. Ashamed to say I don't feel very strong at all. But get some strengh from others on here.

                        Comment


                          #13
                          Thank you all for your kind responses.

                          Comment


                            #14
                            Originally posted by Gordan1111 View Post
                            Hello David. I was reminded of old Monty Python sketch - no one expects the Spanish Inquisition. Ashamed to say I don't feel very strong at all. But get some strengh from others on here.
                            Gordon please don't feel ashamed x we are all here to support you x just take it one day at a time

                            stay safe x Sarah

                            Comment


                              #15
                              Welcome David

                              Richard
                              Richard

                              Comment

                              Working...
                              X
                              👍