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Thread: Hello

  1. #1
    Forum Member
    Join Date
    Sep 2017


    Hi my husband has recently been diagnosed with early onset bulbar motor neuron disease, we have and are still going through the emotions of getting used to the huge upheaval in our lives, we found out in July and have slowly told family and friends after getting our heads round it. We have been amazed with the help and support out there of this association and the medical team which has frankly been overwhelming to my private and quiet husband but I have found it to be very reassuring in this terrifying time. As the weeks have gone on we have both gone through so may emotions and have found a calm after the storm, we are both fixers and we have gone about sorting out our lives to make it easier, selling the house and in the process of buying a bungalow for me as well as I have been recently diagnosed with palindromic rheumatoid arthritis, I have been looking through all the advice you have all posted and it makes me feel that at least there are things we can do to put things in place to make our lives a little easier as things progress. We are general a positive couple which has been hard to maintain at times these last few months but we are getting there, on the up side my husband seems to be progressing slowly with just his voice effected at the moment with his chewing more difficult but his swallowing not being effected as yet, posting on here has take some time and courage as writing it down here makes it more real, if that makes any sense, I would just like to thank everyone for their unwitting advice to date and the advice to come, it has helped in so many ways.

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Mandy and welcome.

    Thanks for being brave enough to post - you are right, writing it down and laying it out make the whole thing real.

    Being positive is half the battle and it's good you've support from all areas.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Forum Member
    Join Date
    May 2017
    Jarrow, Tyne and Wear
    Hi Mandy,
    Welcome to the forum. You're so right about the fantastic support from the MNDA and the whole medical team.
    I'm glad you've reached the calm after the storm.
    This forum is a great support too - whether it be asking for advice, giving advice, venting your feelings - there's no end to what it offers.
    Take care,
    Bern x

  4. #4
    Welcome Mandy

    You found the right place for support, advice, comfort, and friendship for both you, and your husband. Wishing you both the very best in the days ahead.


  5. #5
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Mandy and welcome to the forum;

    I guess your husband has a speech therapist that is helping him get used to speaking apps and swallowing tips etc.

    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.

  6. #6
    Forum Member Streetwise's Avatar
    Join Date
    Dec 2016
    IMG_0270.jpgwelcome my mam had progressive bulbar palsy so I know what you are feeling if you've read the forum you'll understand that what happens to you will probably only happen to you I'm autistic and there is a term in the autistic community' if you've met one Aspie( shortened term for Asperger's syndrome) then you've met One Aspie.
    For instance I am not a savant( Genius ), my mother was told facts that never happened to a lot of people .
    Last edited by Streetwise; 30th October 2017 at 17:31.

  7. #7
    Forum Member
    Join Date
    Dec 2016
    Norwich, UK
    Hi Mandy,

    Welcome, and sorry you have to be here.

    It's a serious head and emotion spin, but it gets better. I've found the medical support, social services and other agencies utterly amazing. To say nothing of the fantastic people here.

    Hanging in there, one day at a time.

  8. #8
    Forum Member
    Join Date
    Sep 2017
    Hi Mandy and welcome,

    I could really relate to your post as my partner has MND and we're at a similar stage to you. The first few months are terrifying but things do start to get a bit better as you adjust and find ways to adapt and cope with things. This forum is a really reassuring place and has helped me so much,

    Tess x

  9. #9
    Forum Member
    Join Date
    Sep 2016
    Cambridge UK
    Hi Mandy and welcome to our happy forum! You will get loads of support and advice here. Like you, we have just experienced our first rollercoaster year. I wish you all the best

  10. #10
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hello Mandy and welcome.

    You can rely on our forum friends for advice and moral support. Like you and your husband we sold our house and moved but with hindsight we were too hasty as my condition is slow progression as I hope you find your husband’s is. I’m pleased we moved now as 5 years in I would not be able to cope with a 3 storey house. We all say that living with MND means you have to be forward thinking especially when it comes to finding things you can do rather than looking back at what you used to do.

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

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