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    Hi Everyone
    my name is Dale my beautiful wife Julia was diagnosed with MND in November 2019. We had a son travelling around Australia at the time For Julia’s birthday we visited Wills in January 2020 whilst she was still walking We had a wonderful time in Sydney After coming home Covid hit so visits to the hospital we’re hit and miss By the May of 2020 Julia was in a wheel chair The next two years were hard Julia never complained once I cared for her the best I could We had a carer come and help us at Christmas she looked after Julia so well they had a good relationship and took great delight taking the Micky out of me In January Julia was under our local hospice for palliative care We had a lovely nurse looking after her Julia was determined to pass away at home Her braze battle ending on June 26 th Just the two of us in her room we built We buried Julia on 19 th July the hottest day this country’s ever had which was nice as she loved the sun It’s 11 weeks since she’s gone and I miss her so much it’s the cruelest illness I have ever seen I pray to good they find a cure so no other families have to live through it as it effects everyone 💛 Rest in peace my dancing 💃 Queen people say we were unlucky I was lucky to have spent 42 years with Julia we met in Benidorm in 1980 Julia was 18 and I was 20 and had the must wonderful time together 3 boys and two granddaughters thank you all for letting me tell our story Dale x

    #2
    Dale, I was going to say a wonderful story but it is and it really isn't. You are so right about this dreadful disease its just horrendous. No one should suffer anything so cruel. At least you have some lovely memories. I hope you have some support at a time when you feel so lost.

    Sending love and hugs to you and your family
    Denise xxxx
    when i can think of something profound i will update this.

    Comment


      #3
      Hi Dale. A very touching post. I often think its so tough on partners/carers.
      one day they are fitting 100 things in to 24hrs then nothing.
      I hope you are coping and I'm sorry your Julia isn't by your side.

      Big hugs x
      Diagnosed May 2021 bulbar onset als.

      Comment


        #4
        Thank you for your post Dale and I wish you and your family the very best for the future ❤️
        Foxes Never Quit 💙

        Comment


          #5
          Thank you for posting this. My thoughts are with you and your family, I hope you find strength in the good memories you have with Julia. My best wishes ♥️
          Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

          Comment


            #6
            Dale so sorry for your loss of your lovely Julia, thanks for sharing your painful loss with us. May she rest in peace, and I hope you will eventually be able to find some peace in the beautiful memories of your time together x
            Last edited by Heather R; 21 September 2022, 15:16.
            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

            Comment


              #7
              Spudthewarrior

              I know exactly where you are coming from. My husband was diagnosed April 2021 and died 2 Sept 2022. The funeral is next week.

              He was such a lovely man and my best friend of 31 years. I have gone from caring 24/7 and sadly watching the decline reducing him from a fun active man to someone who couldn't move, speak, or eat. He also never complained and just took it although he got incredibly upset at each new loss and each new indignity. There was a sadness in his eyes that I will never forget. But he did retain his sense of humour and was still laughing up to the day he died. He insisted on normality so the "taking the Mick" continued all the way through.

              I have been selecting photos for his order of service and it was only 2 years ago exactly that we were climbing hills and steps in Cornwall on our post COVID holiday. At that time he was walking, talking, eating etc as normal.

              My days are now long and although I knew this was coming there is no way you can be prepared for the huge hole that he has left behind.

              People keep saying you did so well to care for him, but I think its just what you do! My body is now telling me to rest as I have aches and pains where I never have before, think its all catching up with me.

              I hope a cure or treatment that effectively shows it down is found as it is a horrendous illness.

              I hope that when I can get my head above water that I can take part in some fundraising activities. But right now I just want to make it through the day (and the nights!)

              Sending you a huge hug as this is an awful thing to cone to terms with. Not only the loss of your soul mate, but also the loss of your own future plans. We were going to get old together and be a pair of grumpy old folk!!!!!

              XxxX
              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

              Respiratory function - CO² Up

              No speech but sense of humour still fully intact.

              Comment


                #8
                MMG such beautiful yet sad words. I bet your frazzled. The pure weight of loosing a loved one must throw the body into limp mode.
                like just about functioning.

                Maybe sneak in a swim. Warm water often soothes tense muscles. A hot oil massage would be a treat you so deserve.

                please take care x
                Diagnosed May 2021 bulbar onset als.

                Comment


                  #9
                  Spudthewarrior Hi Dale. thank-you for telling us your story about your lovely Julia. It’s lovely that you say you were lucky during your 42 years together. I hope you and your family find some comfort with all your special memories together xx

                  Comment


                    #10
                    MMG it’s good to hear from you. I can’t begin to think what it must be like for you at this present time. I’m sure the days are long for you, which is something that I dread. Thinking of you at this time.xx

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                      #11
                      Thank you to everyone who had tepledv

                      Comment


                        #12
                        Thank you to everyone who had replied it’s nice to know I’m not on my own
                        MMG I’m so sorry about you losing you husband to MND watching the illness was shocking I don’t think we’re ever get over losing our partners but hopefully this new treatment I’m hearing about will help future sufferers They may get some help and they won’t suffer as all the previous patients of MND have many thanks Dale 💛💛

                        Comment


                          #13
                          Thank you for sharing what must’ve been a really difficult post to write, it brought me to tears as I’m so sorry for your loss and fear for my husband when the inevitable happens to me.

                          It sounds like you made many beautiful memories together and I hope reflecting on them can bring you some comfort.

                          Much love
                          Pauline xx

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