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    #16
    Hello matthew, I was diagnosed in November last year and those first couple of months for me, this forum helped me see and accept it, and that I was not alone. I still scroll through but I'm still learning and I like to think when I need advice or support there will be people here. It is difficult as we all have different problems and obstacles to over come, so many posts are not relevant to everyone, but they are probably read by all members,
    All the best
    S
    As long as there’s golf and beer I’m happy

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      #17
      Graham, I’m sorry that you feel that way. Can I help at all? I’ve noticed a change in our forums recently but we’ve lost three of the most frequent and upbeat posters. I am still feeling a bit sad for losing them. The ‘feeling’ of the forum is bound to constantly change because we are humans and not automatons. No offence meant by that.

      Since lockdown my days have changed. I always keep myself busy (I am in touch with my own needs and this is the way I cope with life) but as we couldn’t even go out in the car we both started to read many more kindle books than usually. Amazon are making a mint on the likes of us. I’ve read about 23 books since the start of us sheilding from Covid19. I admit that some days I’m so ‘into’ the book that I’m reading that I forget to check in forums. And when I do it’s likely late when I’m tired or very early when I’m still waking up. I’m not at my best then.

      As it happens I’ve been really sleepy constantly the last week. This is because I had to come off Tramadol because it was making me very itchy and they’re trying me on something used for depression as well as pain. It’s supposed to calm nerve endings. But lethargy is one of the common side effects. I’m hoping that this subsides eventually but while it’s there everything is an effort. But I try to stay positive whatever happens.

      What would you like the forums to be like? Have you checked the Facebook forum? Love Lynne x
      Last edited by Lynne K; 1 June 2020, 14:08.
      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.

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        #18
        Unless FB has changed there is no chance of me going back, too many sick people out there ( not ill )

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          #19
          Mathew, I don’t go on the FB forum much because there is too many posts that I can cope with reading. There is a lot of people on it, current suffers, current carers and carers who!s loved ones have died. All very supportive but overwhelming sometimes. 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.

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            #20
            Hi Matthew,
            I'm a carer I guess now and it took me a good 6 months since my partners diagnosis in January for me to reach out. It can be nerve racking to make the first post and so I know there are others out there who will be in the same position and need a few months to come to terms with their circumstances before calling on a support group. Kudos to you for being so brave so quickly to join and reach out. Covid I feel has given everyone alot of thinking time and I know this condition affects everyone differently especially when coming to terms with the changes however fast or slow.
            Being fairly newer to the process, I guess at this point I'm more of a 'question-asker', but will certainly try input where I can.
            I hope the sunshine can make you smile right now

            Tess x

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              #21
              Hi Tess, please don't feel you have to post. This is such a terrible thing to go through whether you have it or care for someone. Perhaps experiencing my dear departed mums altzimers prepared me better than most, but I understand not everyone has such experience. Take Care and stay Strong Matthew x

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