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    Sad News

    Hello My Lovely MND Posse,

    It is with a sad heart, that I let you know that Thomas Wolf (my partner) passed away, so peacefully on Monday 18th April.
    Aged 58.

    It was unexpected (sort of)

    and we were trying to rush the Home Wedding. Missed it.

    It was so peaceful, he was worried about that.

    Hold tight to your loved ones and put off nothing until tomorrow.

    Everyone was so kind, the Hospice, the OT etc.

    You all helped so much with your humour and advice. You made the last 21 months, feel more supported and we knew that someone would probably know the answer.

    PS his last film review, was he enjoyed the new James Bond. Titled "No Time To Die"
    I made him watch to the very end of the credits.

    Humour is my shield, that I carry into battle.


    I may pop back from time to time, I have some reflections on things, that may help others. If that is ok.
    As I always said to Thomas "It's for the science, and to help others, hopefully"


    Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

    Oh. My. Days. Donna, I am so sad to hear of Thomas' death, you must be heatbroken.

    My true condolences to you.

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


      Originally posted by Ellie View Post
      Oh. My. Days. Donna, I am so sad to hear of Thomas' death, you must be heatbroken.

      My true condolences to you.

      Love Ellie.
      Thank you so much.

      My heart is broken but just glad that it was so peacefully.

      Was getting ready to battle home care and social work for some help at last.

      Thomas obviously had other ideas, about that. Followed his wishes of no intervention, which he had strong feelings about.

      Discussing everything and being on the same page, helped so much.

      The support of the Hospice at Home staff was lovely

      I got a nice letter from the consultant and the MND Association. Which was unexpected and lovely.



      Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.


        My condolences Donna. Obviously I didn’t know Thomas but he sounds like a brave man who did it his way. At peace now.


          My condolences Donna. Sending love and strength to you. xx
          Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.


            I'm so sorry for the loss of Thomas. Also tearful that you didn't fulfil the home marriage. But that said just from reading your post I hear the warmth and love you have together. I hope that love helps you through these coming months.

            I hope you can drop into the posse as tips and help is always needed.

            Much love Donnax
            Last edited by shelly21; 8 May 2022, 13:04.
            Diagnosed May 2021 bulbar onset als.


              Donna I am so so sorry for your loss. You are in our thoughts. And how incredibly touching for the consultant and mnda to write to you. Love from Zante xx
              Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.


                Donna, very sorry to hear of Thomas’ passing. I hope you have good support around you at this sad time.

                Take care
                Boiler xxxx


                  My condolences Donna. I am glad it was peaceful but so sorry for your loss of your beloved Thomas. x
                  Diagnosed 3rd November 2021 Bulbar Onset


                    DeeH Deepest condolences ....such a loss.
                    Look after yourself 🙏xx
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​


                      I'm so sorry for your loss, I've only recently joined but have seen a number of your posts and your love and care for Thomas shines through. I hope you take some comfort in it being peaceful and hope you have good support around you x


                        Oh Donna I've only just found out. I was just about to ask about the wedding plans.

                        I'm sending all my love, hugs and kisses.
                        denise xxx
                        when i can think of something profound i will update this.


                          Sincere condolences Donna. A peaceful end is what we all wish for I’m sure, and I do hope this is a comfort for you. Please do give us the benefit of your experiences when the time is right for you.
                          Diagnosed October 2020 - See my blog at


                            Sending condolences to you on the loss of Thomas.

                            Thank you for sharing that the end was peaceful for him, that must make the devastating loss that tiny bit more bearable for you, whilst also allaying some fears for the community on here.

                            I am sending love to you and wrapping my virtual arms around you. I can't begin to know how you must be feeling 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.


                              So sorry for your loss Donna. Thankfully you had great support at this very sad time. Sending love to you. Take care of yourself xx