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  • matthew55
    replied
    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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  • Tess
    replied
    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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  • Lynne K
    replied
    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

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  • matthew55
    replied
    Unless FB has changed there is no chance of me going back, too many sick people out there ( not ill )

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  • Lynne K
    replied
    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.

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  • Shaun
    replied
    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

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  • Arta
    replied
    Hi Matthew,
    I have been diagnosed in January this year so still feel nervous to offer advice but just wanted to say hello and I hope you get all the support needed.
    I have found meditation quite helpful but I guess is not for everyone.

    All the best xx

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  • Ellie
    replied
    Roll on that Eyegaze, Will - it'll make a huge difference to you.

    Love Ellie.

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  • matthew55
    replied
    You guys rock! 😊

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  • Deb
    replied
    Oh Iron will, I really hope you get sorted with eye gaze soon ! I cant imagine how frustrating it must be !

    Love Debbie x

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  • Deb
    replied
    Thank you for starting this thread Matthew. Hope you're having a good day and are able to enjoy the sunshine.

    As Miranda pointed out there was a recent post on how quiet the forum had been recently. I think the threat of COVID has possibly added to our feelings of vulnerability and isolation. I know I am really missing family and friends now although I am grateful if they are safe.

    I do check in most days although I tend not to post if I am having a down day, which is bonkers really as its then we need the support. Some of us have lived with the condition a long time and are more qualified to chat about medical matters than others and sometimes, I guess we just need to feel that someone understands.

    Take care and stay safe,
    Love Debbie x

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  • Jacquij
    replied
    Hi Guys, I am one of the people that reads a lot but does not comment very much. For me I don’t feel able to offer the advise, but do take great comfort and get inspiration from you all to help me on my journey. I hope people who are more confident and all knowing will continue to comment and I will also try.

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  • Iron Will
    replied
    waiting foe eye gaze. arms gone.

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  • Graham
    replied
    Yes, I too am totally disillusioned with this forum unfortunately. It only caters for a narrow viewpoint and there is a small group of individuals eager to troll dissenters from other viewpoints. Live is difficult with MND and people don't the extra hassle this forum provides.

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  • matthew55
    replied
    Don't worry Ellie I will support you for as long as I live x

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