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1 Year On

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    1 Year On

    Hi everyone,
    It's my first post but I had been popping into the forum over the last year and a half and found it extremely helpful. My hubby died on 10 March 2020, 7 months after his diagnosis of MND. It was a quick progression with every day bringing a new challenge. My hubby was extremely brave in the face of everything and MND never took away his spirit, love and zest for life. He never wanted to die, even at the most difficult times. Anyway, it's a year on now. He died a week or so before the first lock down so, for most of the year, it's been me, myself and I. Love never dies and so I still love him as much now as then. His absence is all too present. That hug, kiss, joke, dancing in the kitchen, drumming of fingers on every household implement, watching our favourite programme together, doing nothing together, walking, going for lunch, laughing. All missed. He was such a vibrant, funny and lively person. We spent 13 lovely years together and he had just turned 60 when he died. A very young 60

    I just wanted to say to all those in the very early stages of grief, it does get better albeit it is always there. I'm still 'surviving' rather than 'living' and some days/nights are just so difficult. We didn't have children together so it's me, my cats and dog. I am working from home as well. My office is what was his music studio, still filled with his CD's, guitars etc. It is a comforting room. It can be isolating but I feel very blessed and proud to have had hubby in my life. I can start to look at photo's and remember good times now, although still tinged with sadness. I know at a year on, this is still early in grief. But I do feel I have moved forward, even if it's just a little.

    I love this little quote which, when I read it, made me sit up and think (and cry! a lot of that!) "I wanted to spend the rest of my life with you and then I realised you spent the rest of your life with me".

    Love to you all <3

    Good morning Lily

    I'm in grief but as a person with MND what I grieve for is the bits of me that don't work anymore and the activities that I can no longer do because of my disability.

    I'm going to share this post with my partner as she will be facing this in due course and I note that you are surviving and not living which is understandable but a shame. I hope you had time to make some new memories in the 7 months you had after diagnosis.

    Do stay here and chat if responses like mine are a comfort to you


    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"


      that was beautiful. Such Love, happiness and sadness. I don't think I can say much more because you have me in tears.
      lots of love and hugs Denise xxx
      when i can think of something profound i will update this.


        Hi Lily. Thank you for posting your thoughts. I lost my Ann last October and can relate to much you say. The lovely people on this forum have helped to get me through these past months. So if you feel like checking in occasionally it would be good to hear from you.

        One day at a time eh....take care of yourself


          Hi Lily,

          Welcome to the forum and thank you for posting your beautiful words.

          I am so sorry for your loss. I hope, in time, your happy memories will bring you comfort as some people never experience such love.

          Love Debbie x


            Thank you for sharing your beautiful words Lily. I hope that you can ‘live’ soon and not just survive. Love and hugs 🤗 🤗 . Lynne x
            Last edited by Lynne K; 17 March 2021, 14:36.
            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.


              Hello Lily,

              I realise how difficult it is to lose a loved one and especially during this pandemic where we can’t socialise. You didn’t have a lot of time to adjust to life with MND but you can now enjoy the memories and you probably have special music moments based on your words.

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


                Lily, what a beautiful tribute to your beloved soulmate and a wonderful insight into your personality.

                Your grief must have been intensified by long periods of enforced isolation through lockdowns, I cannot imagine how tough the last year has been for you, and continues to be, but I'm heartened to hear you are moving forward, albeit in baby steps.

                Thank you for taking the time to post.

                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.


                  Lily such lovely words. Life can be so hard, I want to give you a very BIG forum hug.



                    Lily Wren, thank you for your lovely tribute to hubby. I would also like to make memories during my failing years, but my wife does not take part in MND forums and even avoids talking about it. I get looked after very well though, by her, but as a carer not a wife. I hope the end of the lockdown may mean we could do more but I could be too ill by then to go anywhere or do anything.
                    Diagnosed 2nd Jan 2020
                    Both arms/shoulders affected, left worse than right.
                    Progressive Muscular Atrophy suspected


                      Hi Lily ,your post was inspiring.I talk to my husband a lot about how he sees his future when I am no longer here.We even have laughs about it as after 45 years marriage we still find humour in something most days.I am keenly aware that my husband Steve supports me daily in so many ways to remain at home.I encourage him to take breaks to do his own thing.This week he did a 9 mile walk with a friend which he loved.I am glad he has a close circle of friends and our family that I know will be his listening ear now and when I am no longer here.The impact on spouses, partners can be so hard during the MND journey and after it’s over.Best wishes to you Lily and loved the quote. Mary


                        Hi Lily,
                        It must have been a huge loss to cope with in this lockdown time, glad you can feel moved on a bit in your grief, and can feel him still with you xx
                        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!


                          hi Lily , such lovely words. I got 11 and a half months with Mick after diagnosis. I still miss him every day. I feel anxious on the drive home from work, I hate the empty house. We were together from me being 16 so 41 years. I have to be grateful, some people will never have what we had, but it is still so hard. I never accepted the diagnosis. I used to think what has he ever done to anybody to deserve this. He handled the disease with such courage and dignity. I felt cheated out of our future together, and I still feel so so lost. My heart goes out to all you sufferers of this wicked , vile disease


                            Loosing someone you is hard in so many ways, I know having lost my daughter, mother, father, both grandparents and all uncles. The only thing that ever worked for me is time and the first time I thought it was a stupid idea. I was wrong. 😉😄x
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx