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Thread: Hello

  1. #1
    Forum Member
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    Hello

    Hello All,

    My name is Chris, I'm 51 married with 2 children and was diagnosed with mnd a month ago.
    I've had symptoms for about 5yrs started with foot drop, progressing to balance problems, occasional leg spasticity, night time leg cramps and affected speech etc... etc...
    A recent career mnd 'highlight' was falling into the canal whilst out cycling, managing to scramble out looking like a swamp monster!! , Needless to say my wife has now banned me from going out on my bike
    It is great to read the positive and informative comments on this forum from what I have read to date and I hope I can contribute myself in the future. In fact one nugget of information I can pass on is that if you are lucky enough to 'think' you can still cycle but have balance and slow reaction times - don't cycle on the canal tow path!!!

    Regards to all.

    Chris

  2. #2
    Forum Member Ellie's Avatar
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    Hi Chris and welcome to the club nobody wants to join - crikey, you're lucky you are still alive to join us, after your unscheduled swim!!

    Making that first post is the hardest post to make, hopefully you'll find support and help from the Forum.

    You seem to have a slower type of MND which should let you adapt to challenges as they arise, but it can almost cause complacency too, resulting in falls (or swims )

    Stay safe and healthy - get the flu shot in the next 2 months and the pneumonia vaccine, the PPV23.

    Love Ellie.

  3. #3
    Forum Member Gillette's Avatar
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    Hi Chris,

    Welcome to the forum but sorry that you have the diagnosis.

    There is a huge amount of experience and knowledge on the forum - as you've probably guessed - so feel free to ask if you need advice.
    Dina


    Trying to keep positive, but not always managing.

  4. #4
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    Hi Chris and a warm welcome to the forum.

    I am so sorry for your diagnosis but it's good that you've posted as there is always practical and emotional support on here from people who understand. You must still be reeling as the diagnosis is such a shock, even if it has been expected so be kind to yourself and your wife and take things slowly, in the early days.

    It sounds like you have a great sense of humour and a really positive outlook so that really really help you all. Oh and thanks for the top tip.. I will definitely avoid canal tow paths !

    Take Care,
    Love Debbie x

  5. #5
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    Hi Chris, and welcome to this very friendly forum. Lots of help and advice on here. Oh, and we have fun too.
    Best wishes
    Sheila.

  6. #6
    Forum Member Lynne K's Avatar
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    Hi Chris. I'm sorry that you have had to join us but you've found a great place to share, give and receive tips and chat. I'm glad that your recent unscheduled swim didn't end in a+e. Take care. 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.

  7. #7
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    Thank you all for your kind words of encouragement and thanks for your flu and pneumonia jabs tips Ellie xx

  8. #8
    Forum Member Barry52's Avatar
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    Hi Chris and welcome.

    As Ellie suggested you may have the slower progression MND and like myself 8 years in you learn to adapt. Of course this doesn’t mean that you won’t have challenges as you have already demonstrated but beware of falling and use a walking aid when you feel you may have balance issues.

    I had my flu shot today and your doctor should agree to it even though you are only 51.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  9. #9
    Forum Member Terry's Avatar
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    Hi Chris and welcome to the forum,

    Sorry to hear about your recent diagnosis.

    I still went canoeing after I was diagnosed and we were in a very big indoor pool practicing saving a person who capsized. I of course volunteered, but my old tracksuit trousers kept full of air, forcing my head lower down. They all thought I was playing the part well as a drowning man. I had to save myself by going under and forcing the air out of my trousers.

    Your Mnd seems to be a slower one. I

    Please feel free to ask any questions or share things with us.

    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.

  10. #10
    Forum Member nunhead_man's Avatar
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    Hi ChrissyG

    Quote Originally Posted by ChrissyG View Post
    In fact one nugget of information I can pass on is that if you are lucky enough to 'think' you can still cycle but have balance and slow reaction times - don't cycle on the canal tow path
    Welcome - and hope that developing slowly is a comfort to you?

    With my arm onset I do still cycle at the moment using a bicycle that is amended so that I can brake with one hand - I have both brake cables led to a lever on my right hand where I still have some grip.

    I suspect what will stop me cycling will be lack of arm strength and lack of grip rather than loss of balance, but we will see.

    Luckily, canals are not part of my usual routes!
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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