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Thread: worried about the forum.

  1. #11
    Forum Member Jan's Avatar
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    I am currently away on a holiday on the Isle of Wight where we have our static home, 2 refreshing things happened this week, firstly we visited an Indian restaurant where we know the owner, she questioned why I was walking so slowly and with a stick, as the place was quiet we told her, no gushing from her, no but you look so well etc etc, just a 'how long do they say you have got' blunt and to the point followed by live every day to the full and do what you can whilst you can. Next day out to lunch with friends one of whom is a nurse, I could speak quite freely about the hospice, and my future care etc and again no gushing or tears from them. Meant a huge deal to me. Whilst I absolutely admire all the carers out there, I want to hear the realities of this disease, what it's going to do to me, what can I expect etc .

    What strikes me though is that I find I am always using the 'i' as in me and I do feel very selfish for talking about my own issues, I have lost count of the times I have gone to post only to scrub it out because I felt as though I was putting too much of myself out there

  2. #12
    Forum Member Terry's Avatar
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    There are often over 200 people looking at the forum and around 12 of them are members of it. I would think that most people looking in are affected by Mnd but don't want to post or feel able to post.

    Very few of us are literary experts, so things are said in ways we might not mean. Some are blunt and some are woolly. Jan, it's important to bring up your own issues as well as helping others.

    Terry

  3. #13
    Forum Member Barry52's Avatar
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    Mik makes a valid point about the lack of promoting the forum. I regularly attend 2 MNDA regional meetings, one in LIncolnshire and the other in Nottinghamshire. Of the 50 or so members and carers attending these meetings I have only found 2 regular contributors to our forum. One is our Joycie and the other is me. I suppose it takes a great deal of confidence to share your stories but another factor I have encountered is limited IT technological skills with some older members.
    This is our forum and I shall make a point of promoting it at future meetings.
    Happy Easter to all.
    Barry

  4. #14
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    Happy Easter to you too Barry and all members Pam as x

  5. #15
    Forum Member Tikitiboo?'s Avatar
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    Dear All

    I was so pleased to read Mik's new thread and Rainey's reply underneath. I too am completely P....d off with trying to 'be brave' when I just want to scream (which I do when I'm on my own).

    Like Rainey I have support from my family but I want them to continue their own lives. Even though they say they want to help. Locked in this useless body. The voice nearly completely gone etc., etc. I am going to say it .... If an animal is suffering the vet puts that animal out of its misery ... I want out of this every day! Those goody goodies out there, prolonging our suffering, ought to be in our shoes (if we could put them on!!) for a day.

    Hugs
    Anna

  6. #16
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    Anna, I personally don't think anyone is prolonging our suffering. Some of the best neurological brains in the world are striving to find a solution. It just isn't as easy as that, is it? The search for a cure, if it came today, wouldn't help me at all with my bulbar onset because it will come too late. I knew that on diagnosis so I don't get myself wound up. I have found a place in my soul where I can accept what is going on and that I just have to get agencies around me who can help me and particularly Peter and my close family. Of course I have times I rail at the unfairness of it all We are newly married, we could have had a wonderful time travelling all over the world but the die is cast and we are restricted. I have lost my voice completely, Anna, but that isn't what bothers me - I grieve for the loss of my mobility to do all the simple things I used to do, to go out in the garden planting, feeding the birds, walking the dog,................being safe to cook in the kitchen again, being able to go around the bungalow and bend down and pick something up without toppling over, to go to town and just stroll around, walk on the cobbles, I am very saddened about that but I am not bitter at all. For me it is a wasted exercise.
    I might feel totally different when it really kicks in and immobilises me completely but for now I have an element of independence and I thank God every day for that. Much love Joycie x

  7. #17
    Forum Member Tikitiboo?'s Avatar
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    Dear Joycie

    I thought that Mik's thread was for members of the forum to have a rant. Of course I feel the way I do because I miss all those things you do. I live in the country. I used to bike ride, walk my dog, cook family get togethers etc etc.

    I was so pleased to see Mik and Rainey's comments but your reply has sent me back into my shell.

    Anna

  8. #18
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    Hi
    I have to agree with Joycie, I don't feel bitter about my lot - pretty narked about sometimes.

    The sister of a good friend of mine went out in her car one day, an 18 year old driving a 80,000 range rover ploughed into her and Charlotte died.

    At least I have the 'luxury' of compiling a bucket list if I want. I can talk (just about) to my family and say the things that matter. All of which I am grateful for.

    On the hand if we all thought exactly the same what a boring life it would be.

    Anne

  9. #19
    Forum Member Terry's Avatar
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    Hi Anna;

    I have always wanted a pill that I could take when I've had enough and think that something like that should be available, some EASY > ? way out. LOL

    Terry

  10. #20
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    The forum is still the best sorce for friendship and information.

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