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    Lost for words

    I discovered my only son has MND and I’m bc struggling like never before in my life

    #2
    There’ll be a lot of posts like this I’ve no doubt, please bear with me, discovering your only child has MND and trying to support him and come to terms with it is just heartbreaking, I think I’ve spent the last 8 months trying to smile on the outside and falling apart on the inside, a 24 hours a day nightmare.

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      #3
      Oh David I’m so sorry to read this. I completely understand your and your families devastation.

      Can I ask has your son had a definite diagnosis from a neurologist.

      It will take time for you all to make sense of what has just happened.

      This forum can be a great source of support and advice. When you are ready ask anything because someone will have experience of your question

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        #4
        Hello David. I'm sorry you've been given such terrible news. On a practical level I echo Bower's thoughts - has it been confirmed by neurologist? Do you know what type it is? These may seem trivial questions after the initial shock, but have relevance x
        Last edited by Gordan1111; 5 May 2021, 09:54.

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          #5
          Hi David, so sorry and you must feel shell shocked.Hopefully if a neurologist made the diagnosis he will link your son to health professionals that will support you both?
          The shock of MND diagnosis alone is enough to derail you both but there is help and support so hope your son gets linked in to it soon.
          Best wishes
          Mary

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            #6
            Hi David. So sorry to hear your news but well done for reaching out on the forum. I know how much my husband suffers from watching me but his strength helps get me through. I encourage him to go out as much as possible and see his friends as it helps clear his head and give him a better perspective on things. You have to look after yourself first and foremost so that you can support your son when he needs it.
            All the very best,
            Sarah.

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              #7
              Hi David

              it's hell I know. My husband's diagnosis was such a terrible shock. Some days we cope better than others. Take one day at a time and try to make the most of it.

              we are all here for each other.

              love and hugs for both of you Denise xxx

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                #8
                I can only imagine what you are going through, it is no problem for me, it is the people that I leave behind that have to pick up the pieces who I feel for.
                Diagnosed 2nd Jan 2020
                Both arms/shoulders affected, left worse than right.
                Progressive Muscular Atrophy suspected

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                  #9
                  A warm welcome to you David.

                  I know that my parents were totally devasted by my own diagnosis, especially my dad (because I'm a Daddy's Girl) but the shock wears off and it does get easier as you process the reality of the diagnosis.

                  Difficult though it will be, I hope you can stay strong for him, be positive and supportive. You also need support and an outlet for your emotions and hopefully you have support from family and friends - MND Connect have a Helpline if you ever need to talk to someone understanding, their contact details are on this site.

                  Take care and sending you a big hug.

                  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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                    #10
                    Oh David I’m so sorry for the MND bombshell to fall on your only son. I hope that he has a slow version of it and that he gets all the professional help that he needs sorted quickly.

                    You’ve found a good place for support, advice and understanding. Take care, Lynne
                    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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                      #11
                      Welcome to the forum David,

                      I am so sorry for your son's diagnosis. Its impossibly hard for MND carers to see their loved ones struggle and there's nothing more heartbreaking in life than to see your own child suffer.

                      I wish you strength and I am hoping your son has a slower progressing MND,
                      Take care of yourself,
                      Love Debbie x

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                        #12
                        Thankyou to all of the above for your kind words, it was confirmed in September 2019 but I knew something was wrong for some months before, he has been in a wheelchair since 2011 (ex military) and had be doing incredibly well but this is sucking the life out of him, I’ve never seen him so low, guess it’s the realisation that this is one battle he just can’t win, not being dramatic, just honest,

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                          #13
                          Hi David, I am not sure if your son lives alone? It’s a terrible blow and hope he gets the support from the health professionals.I found it useful talking to a clinical psychologist and at present continue to have this support available.I was referred by the hospice team.Sometimes talking therapy can help to discuss fears, emotions etc with someone outside the immediate family.Just a suggestion as your son’s emotions must be all over the place.Also hope you get some support via the health professionals or via MND association.
                          Best wishes
                          Mary

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                            #14
                            David71 I second what Mary C said - I saw a clinical psychologist for couselling for several months after my diagnosis and I cannot stress just how much it helped me.

                            Maybe your son would talk to someone? I wasn't a 'bare all' type back then, but I knew my diagnosis had a profound effect on me so I relented.

                            Take care of yourself David and maybe you could talk to someone too?

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

                            Comment


                              #15
                              That must be heartbreaking, David. As the others said, get all the help/support/counselling that you can for yourself, so you can be strong for him. Sending love and best wishes for coping with it all, Heather x
                              Diagnosed July 2020, ALS bulbar onset.

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