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    Introduction

    Hi I am a 62 year old male from Australia who has just been diagnosed with MND. To say me and my family are devastated is an understatement.Just the shock and the unknown ahead, let alone the end of all my retirement and life plans..

    #2
    Peter
    Welcome to the group no one wanted to join. It is devastating when you are first diagnosed. Happy dreams and plans evaporate into concerns, worries and sadness.

    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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      #3
      Thanks Richard
      you're newly diagnosed too?

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        #4
        No. My first symptoms were five years ago this month. I was having trouble walking. I was told in early 2016 that is was most likely to be MND and then embarked on to loads of tests. I was formally diagnosed in 2018. I have slow progressive MND. I can no longer walk as my legs are useless. Occasional severe cramps in arms and upper body. The fist part is to accept you have this horrible disease , presently there is no cure but over the last 12 months there have been loads of advances.

        Remember keep smiling and that whilst you are the patient your family are also suffering with you.

        Richard
        Richard

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          #5
          Thanks Richard
          it’s heartening you are still ticking along!
          one of the scariest parts is how short a life it can be. I’ve had a limp on right side since May this year but other symptoms since lots of tests which just eliminated everything else.

          Comment


            #6
            Welcome to the group Peter

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              #7
              Thanks jd

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                #8
                Hi Peter. It is a great shock not just for you but everyone who knows you. I deal with it by just saying it is what it is. On the plus side you get more time to arrange things than others. Stay Strong Matthew 😁x

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                  #9
                  Hello and welcome Peter,

                  We have a few Australians on this forum and the collaboration with the UK and Australian scientists over the past few years has brought hope of new treatments. Ask any questions here and someone will offer advice.
                  I’m going to do this even if it kills me!

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                    #10
                    Hello Peter and welcome,
                    it is a shock but given a bit of time you will come to terms with it, all my retirement plans changed, so we have adapted them, it was always our plan to move to the coast , so instead we bought a holiday home now, so we can enjoy it whilst we can, rather than in 5 years or so, plans can change just think a little differently. Don’t let this change who you are, do what you want, as best you can.
                    shaun
                    As long as there’s golf and beer I’m happy

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                      #11
                      Welcome to the Forum, Peter.
                      ​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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                        #12
                        A warm welcome to the forum from me Peter,

                        The diagnosis is such a shock and I found all the well meaning advice from professionals overwhelming. I couldn't believe they were talking about me and I spent ages googling alternative explanationfor my symptoms.. I guess its a denial and I wasn't ready to accept things.

                        Things do get better as you adapt both physically and mentally. There are still good times to be had.!

                        Take care of yourself,
                        Love Debbie x

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                          #13
                          Hi Peter
                          it's a shock I know. I thought something was wrong with my husband. We had retired to Portugal. Now I just want us to get back to the UK so we can be close to friends and family. I have made some wonderful friends here. This forum is not just for you but your family and friends. I hope we can be there for you.
                          Denise xx

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                            #14
                            Hi Richard,
                            your symptoms sound remarkably like my husbands - he started falling 2016, started seeing consultants in 2019, had loads and loads of tests, but still awaits a true diagnosis - we have been on a merry go round of "maybe its this that or other" his legs practically gone now

                            Are you able to eat/drink and speak as normal? My husband is ok on that score

                            Sue

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                              #15
                              Hi Peter, a warm welcome. Everybody will get a big shock when they’re diagnosed and it sure does take time to get your head around. I hope that you have a
                              s good services down under as we do here.

                              Our retirement plans were thwarted by my MND but we do whatever we can to stay upbeat. 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.

                              Comment

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