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Thread: Hello I am Pete Burton recently diagnosed with MND

  1. #1
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    Hello I am Pete Burton recently diagnosed with MND

    Hi I am 61 and diagnosed on 4th Oct, a little unsure at present how to go forward, although I am supported by a good team. Trying to stay positive for my family.

  2. #2
    Forum Member pete's Avatar
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    Hi Pete, from one Pete to another as I was diagnosed with Bulbar type I’ve outlived the prognosis given by my professor ,so don’t take everything as written In stone ,we are individuals and as such stay positive ,read a lot , question why everytime advice is given and above all don’t be gullible ,make your own choices and above all don’t put off things you want to do live each day and stay positive

    Regards
    The other Pete.
    All I need is a miracle

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    Hi Pete B,
    Welcome to the forum. I know it's somewhere you would rather not be but you'll get good advice, help, ideas and sympathy when you're feeling down.
    Hopefully you've met your consultant and nurse and that should set the ball rolling re a physio and occupational therapist. It's all so overwhelming! I know what you mean about being positive for your family! Take each day as it comes and plan things you really want to do.
    Take care,
    Bern x

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    Thanks Pete & Bern, mine is also Bulbar and I am keeping an open mind

  5. #5
    Forum Member Terry's Avatar
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    Hi Pete b and welcome to the forum;

    I guess that you are still in shock with such a recent diagnoses. You sound quite sorted already having a team.

    Try not to look too far forward and to a certain extent, live one day at a time.

    Please feel free to ask any questions and join in with helping others.

    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 keeps 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.

  6. #6
    Forum Member Barry52's Avatar
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    Hi Peteb,

    Welcome to the forum. I hope you can remain positive and the other Pete is a good example of this. I note you are in Lincoln and I am a member of the Lincolnshire MNDA committee. If you want to meet up for a chat then please send me a private message.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  7. #7
    Welcome I was a carer to my mam -Who was bulbar onset !,at the time of her diagnosis I had never heard of another form of motor neurone disease ,'then I saw people at the RVI in Newcastle ,I was shocked -why did my mam have to suffer .?(The MND nurses said it was the worst case of MND they had ever seen .
    I wonder if it's because she was neuro diverse (autism,bipolar disorder, other disorders )the term explains anyone who isn't neuro typical (all that means is you have the Neurology -people on your autism spectrum like me to call neurology wiring) - of large percentage of the population.
    But she had spirit ,needless to say I was discombobulated by her becoming ill, so even though she couldn't speak- she was still running the house, I was just her arms and legs .

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    Hi Pete. Dont believe everything you read about MND. Everyone is different and as such everyones MND is different. Keep positive and stay on top.

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    Hi All, I am thinking of starting my own blog. Any thoughts

  10. #10
    Forum Member Terry's Avatar
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    Hi Pete B;

    Others have done similar but I don't tend to look at them much.

    Lee has this thread on his blog:- http://forum.mndassociation.org/show...ND-for-3-years

    Love 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 keeps 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.

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