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    Thank you all for your messages, everyone has been so kind with there messages of sympathy, its a comfort to know people do care.
    once again thank you



      Hello Dave,

      Many thanks for kindly getting in touch with us. It was very thoughtful of you, at what must be a very sad and difficult time.

      I hope that you are getting plenty of support from family and friends.

      You have many friends here and so please feel welcome to get in touch with us again, whenever you would like to.

      I hope that you are looking after yourself.

      Thinking of you,
      Love Kayleigh


        lovely to hear from you again David at this extremely sad time


          So sorry to hear this. You are in my thoughts x


            Hello to you all, it's been a very busy week, sorting paper work, its helped me take my mind of things, I don't know about other members dealings with social service's and the nhs, but my anger is growing about how little help we were given after the diagnosis, how does it take 5 months to be assigned a social worker, all that I think that could have been done better will be highlight through my local AM, not for complaining's sake, but so that nobody has to go through how we were dealt with, the lack of guidance, the fact of having to chase people over equipment, he way the dietision said if we didn't have the peg, hers word "you'll starve", they way people spoke to me regarding my wife, if I complain through my AM/mp and it helps the next person, i'll be happy. dave.


              Hello Dave,

              You have been in my thoughts, at what must be a very sad time for you and your family.

              It is so kind of you to think of others, and very caring of you to want to do something in the hope that other people will be treated better than you and your wife were.

              At the moment you have got a lot to deal with and come to terms with, and so please make sure that you are looking after yourself. Hopefully, you are able to get enough rest and sleep and you are eating regularly.

              Hopefully you have family and friends to keep you company and help you out with things.

              Thinking of you.
              Take care.
              Kayleigh x
              Last edited by Kayleigh; 20 January 2019, 01:28.



                Hi guys, sadly my Husband passed away on the 1st March, he was yo get his peg fitted the week before, but they didnt think he was strong enough. I don't know if this got to him but he didnt feel like eating when he got home, they gave him the machine up help his breathing. He tried the cpap buy it didnt help, he wasnt keen on this one but said hed give it a try. The night before he died he refused it ,said hed use it in morning. When I woke up ,at first surprised that it was morning we were usually up through night. He was gone ,he had just went to sleep. I remember when I first looked at this forum, someone with mnd said if we're lucky liz ,we go in our sleep. So for Steve's sake he was lucky, but I hate it knowing he stopped breathing when i was asleep when i could have been there. He hated what mnd had done to him, that i had to do everything for him, he was a man who thought he should look after his wife and family . I'm so sorry to ramble but I'm finding it hard coming to terms with him not being the biggest part of my life .


                  So sorry to hear of the sad loss of your lovely Husband xx


                    Dear Caljake, I'm very sorry to hear of your loss. You don't have to apologise for your 'ramble.' It must be really hard. Take care, hugs, 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.


                      Hello Caljake,

                      Please accept my condolences for the loss of your beloved husband. We all hope that when the time comes it will be peaceful and don’t reproach yourself for not being awake at the time. I hope you will soon look back on happy times in your lives.

                      Barry x
                      I’m going to do this even if it kills me!


                        Hello Caljake,

                        I am so sorry for the loss of your darling husband. I hope you have love and support around you and that in time your happier memories will be of comfort to you.

                        Love Debbie x


                          Oh Liz, I am so sorry to hear that your beloved Steve has gone.

                          Please don't beat yourself up about not physically being by his side when he died. It sounds as if he felt free to let go, which is testament to the love you had between you , if that makes any sense...

                          Please accept my heartfelt condolences.

                          RIP Steve.

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


                            Deepest condolences to you Liz. I hope you have people to take care of you.
                            Sending you love and hugs x
                            Boiler x


                              Hello Caljake

                              Please accept my sincere condolences on the loss of your husband. I have visited this forum periodically over the last 2 years but have never contributed until now. After reading your post I felt compelled to, it could have been written by me. I can totally empathise with you and your situation.

                              I lost my husband in January 2018, just 5 months after diagnosis. He was 50 years old. Like you and your husband we went to bed that night but he never woke up. It was the first night he had used the breathing machine overnight after using it for short periods during the day. Looking back his body was shutting down in the couple of days before his death. I can see that now but when you are in a situation and every day is upsetting and a struggle you just don't see things as clearly. Even if I had he would have refused to go into hospital, I know that deep down.

                              I will never get over the trauma of finding him next to me that morning and all that followed. He wasn't ready to die and I wasn't ready to let him go. He was my husband, best friend and soulmate. I still find it hard to believe what has happened and that he has gone forever. I never thought it would end the way it did. He was still walking and managing the stairs in our home although he couldn't walk far due to his overall weakness and shallow breathing. He had also had a fall the week before. He was still talking although his speech was becoming slurred and difficult to understand at times. We never got to say a proper goodbye. I had to watch him suffer then he was taken from me so suddenly. I had visions of us knowing it was near the end and me holding his hand and looking into his eyes, comforting him and telling him how much I loved him.

                              We never really got the chance to come to terms with his diagnosis. It all happened so fast. He lost 3 stone in weight in the last 3 months of his life. That was on top of the 2 stone he had already lost over the course of the previous year. He was very fit and lean to start with, he never carried any extra weight. He was completely destroyed in front of my eyes in a very short space of time. It truly is the most awful disease and I have the utmost admiration for the people who contribute to this forum despite their own difficulties. You are all so brave for sharing your experiences to help and support others.

                              I accept that the ways things happened was the kindest way for him but it is so tough for the loved ones who are left behind picking up the pieces. I miss him and our life together so much. It is so unfair that my children have lost their amazing dad.

                              Apologies if my post is a bit muddled. I have found it upsetting putting it together but felt I had to.

                              Love & Best Wishes


                                Hello Caljake, my condolences to you on the loss of your husband.

                                Hello Delta, you have been tremendously brave sharing your feelings and experience of losing your husband. I am so sorry that you have been struggling so much with your loss. I think your post will help many people who have lost a loved one to MND as it is so honestly and sensitively written. I hope that you and your family are managing to find a way of living without your husband.

                                Trying to keep positive, but not always managing.