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Thread: Kevin 55

  1. #11
    Forum Member Terry's Avatar
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    Hi Kevin and welcome to the forum;

    Yes most of the people with many posts have a slower type but the forum is made up with many people with different types of Mnd.

    I retired about five years from the fire service before I started to get problems too.

    As Ellie proves, you never know and you seem to have a good attitude.

    Try to live life the best you can and to help you with this I recommend your local hospice.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  2. #12
    Forum Member TIANDB's Avatar
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    Thanks for your good wishes both Ellie and Terry. I do indeed have a positive attitude and have all I could do in place if I go down my slope to the bottom. No Hospices near me or they have not been mentioned by my health team. I meant no offence to any who may have been able to last some and maybe some extra with our sad label. I have messaged the RCH4 website and hope for a reply ? I also am attempting to help myself dietary wise and with some supplement input. If I can slow or even stall my tick tock down ? I , like most, I will of course try.
    Wishing you both the best that can be.. Take care.. TIANDB
    Last edited by TIANDB; 1st July 2018 at 11:20. Reason: ADD

  3. #13
    Forum Member nunhead_man's Avatar
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    Quote Originally Posted by TIANDB View Post
    No Hospices near me or they have not been mentioned by my health team.
    If you can be more specific about where you are we might be up to help you with hospices

    And have you found the MND specific nurse in your area yet?

    Also a visitor may be helpful - https://www.mndassociation.org/getti...ion-visitors/a


    Quote Originally Posted by TIANDB View Post
    I meant no offence to any who may have been able to last some and maybe some extra with our sad label
    No offence taken here - everyone changes at their own rate and in different ways it seems - that uncertainty is something I have had to come to terms with.

    As said above lots of support here - just ask!
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  4. #14
    Forum Member TIANDB's Avatar
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    Hi Andy.
    Matlock in Derbyshire is my abode Town.
    I last week had a meeting with Jane Evans our Regional MND association Rep. I have a occ health visit on Tuesday from the local MND team.
    I have not investigated Hospices as I do not think there are any close by and they have not been mentioned by anyone.
    I can just about hobble round my apartment Ha Very unstable so I tend to stay put, no chance of me posting about a 1/2 marathon or
    Driving anywhere unless a Miracle appears soon .

    Take care Friend.. TIANDB

  5. #15
    Forum Member Terry's Avatar
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    Hi Kevin;

    I hope you have contact with an OT so that they can get you things to make your walking as safe as possible.

    I use a rollator and a three wheel walker to get around and they are both weighted to make them more stable.

    I hope you live on the relatively flat area of Matlock as there's some steep hills around there.

    I didn't take any offence from what you wrote, maybe my reply was a bit sharp. I'm not so good at written English and tend to rush things.

    Finger crossed for that miracle.

    Love Terry

  6. #16
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    Hi Kevin
    You sound like you have a really positive attitude and are doing lots to help yourself. I was only diagnosed in March after loads of tests . I had been warned it was likely and to be prepared.

    I have seen two MND Neurologists and specialist nurses and they have all said that it is impossible to predict the rate of progression because everyone with MND is different. In a way, although thats positive, it's human nature to want to look ahead and make plans and I have had to adapt to taking a day at a time. I have been advised to try and stay one step ahead ( unfortunately not literally ) in making adaptions to our home.

    I wish you all the best and fingers crossed too for a miracle.
    Terry, you are never sharp ,
    Love Debbie

  7. #17
    Forum Member TIANDB's Avatar
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    Hi Deb Thanks for your good wishes. The miracles I seek are for all of us in this sad Club.. Take care.. TIANDB

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