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Terry's Son

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    Terry's Son

    Hi everyone, I'm aware my father (Terry) who recently passed away was very active on this forum, it's nice to know that he was able to help others as I never knew about this while he was alive. I wanted to say thankyou to everyone for the comments I've seen regarding him since his death, it's very heartwarming to see!
    I also wanted to offer an ear to anyone who wants someone to talk to, although I was not my father's carer full time, I did care for him, take him for days out, and see the full range of effects of the disease from the start. If anyone cares for someone who is going through it, or is going through it themselves and needs someone to talk to, I'm more than happy to give out my mobile number for you to text or WhatsApp when you are having a bad day.
    Another thing I have to do is deal with the selling of his wheelchairs, I'm not sure if that is allowed on here, so please let me know.
    Regards
    Luke

    #2
    Hi Luke,

    So sorry to hear your Dad has passed away, is this Terry who lived in Suffolk, if so I believe I may have met him once at St Elizebeths hospice in Ipswich in Feb 2019? If it was him he inspired me and helped me as I had just been diagnosed and was at the event with the support of my wife and two sons.

    Regards

    David R

    Comment


      #3
      Hi David,

      Yes that's him, he regularly attended St Elizabeths hospice for events or respite for my mother.

      I'm glad to hear he was an inspiration, I've learned so much about him since he passed away about how much he did for others, it really has been amazing to know.

      I hope you are getting on ok, and like I said, of you ever need someone to talk to I am here. I would like to be able to give something back by accompanying people who are affected by the disease on days out, but I am disabled myself following an accident at work and am not sure how long it will be (if ever) until I recover fully.

      Luke

      Comment


        #4
        Hi Luke,

        Thank you for confirming it was Terry I met, I didn’t want to go on too much in the last message incase it wasn’t him but he was so friendly and helpful the day I met him and really helped me to move forward having only just having been diagnosed at the time. He was very comical and handed me an iPad to talk to him electronically as he did and using the equipment we had quite a laugh and joke with each other, he also encouraged me to feel where his button was for the feed tube and how little you noticed it, another of my fears at the time which I’ve got over and now have one myself. my voice is now very poor and I’m trying to adjust to using voice apps but really don’t like that move, I keep telling myself to think of Terry and how he made it look so easy and except it. I’m still physically able at the moment although I can detect a slight weakness coming.

        Sorry to hear you’ve had the accident and are currently disabled, I really wish and hope you recover at some point.

        Best Wishes David

        Comment


          #5
          Hi Luke,

          Welcome to the forum!

          Terry was a much loved and is now much missed member of this community here - always helpful to me in a way I cannot forget.

          I'm sorry to hear about your disability and hope you do find some way of improving your lot and do recover fully

          Warmly

          Andy
          Warmly


          Andy

          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

          Comment


            #6
            Hi David,

            The hardest bit of the voice apps is people around you not giving you time to type, and then walking off or changing the conversation. I found that some people were very patient with him, and some people seemed to find it hard to understand. Luckily although most people couldn't understand his speech, I was always able to understand most things he said saving him from having to type too much when we were having conversations, or I was able to semi translate for him. I'll never forget some of the entertaining conversations me and him had, especially with misspelt words that ended up sounding comical or rude! I think the voice machine ended up becoming an extension of himself and we were so used to it I never had to think about it as odd or unusual.
            I hope you get on well with using it and drop me a message if you have a bad day, I'll reply when I can!
            Also good to hear the feeding tube is working for you, I found I was nervous around his at first but soon learned how to navigate it, and again it never seemed to get in the way or be an inconvenience, although it wasn't until very lare that he had to use it fully.

            Thankyou Andy, so nice to hear. The funeral was of course upsetting, but amazing to hear the words of so many people who wrote to say they were helped by him. If anyone does want one, we still have a few of copies of the order of service i believe, with some nice pictures of him.

            Thanks

            Luke

            Comment


              #7
              Hi Luke

              I always considered Terry as a friend and I was upset when I learned he had passed away. We met a few times and we would exchange banter on the forum as we became members around the same time. Your dad was an inspiration to many of our members and he offered so much help and advice that many of us are indebted for.

              I wish you a full recovery from your accident and I thank you for posting.

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

              Comment


                #8
                Hi Luke,

                Thank you for posting on the forum. Although I never met your Dad I found his positivity and good humour inspirational. He was always ready to reply to posts with sound advice and he was often the first to welcome new members. I really miss our online chats and his fantastic sense of humour.You must feel very proud of him.

                I hope you recover soon from your accident,
                love Debbie x

                Comment


                  #9
                  Thank you Luke for getting in touch. I really miss your Dad and having also joined the forum around the same time. Along with his welcome to newbies and his sense of humour,He Also kept a thread Motorbike Mania updated with details of which channel was showing Moto GP and WSB . Hopefully you have support for yourself and family as you come to terms with your loss.

                  Comment

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