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Thread: Diagnosed with ALS variant of MND

  1. #1

    Diagnosed with ALS variant of MND

    Hi all,
    I was diagnosed with hereditary MND/ALS on 22nd March, so have had plenty of time to get used to the fact and to get on with making preparations for the future. My mother had this 30 years ago, so it's no stranger to me. I can trace symptoms back to summer 2017. I was lucky to be diagnosed after a single visit to a neurologist, but had months of other diagnostic attempts from autumn 2017. So far it has attacked my legs, but I'm still walking with the help of a stick or rollator. I am looking to technology to avoid locked-in syndrome and have banked my voice. I now know the gene mutation that is responsible. The plan is to live life as normally as possible for as long as possible. I have 5 siblings, so am keeping them abreast of developments.

  2. #2
    Hi John

    Welcome to this forum, where you'll find fantastic people who can help with information about almost anything to do with living with MND. Although, by the sound of it, you know a very great deal already.

    Your plan sounds perfect. We must do all we can for as long as we can.

    All the best


  3. #3
    Forum Member JAY TEE's Avatar
    Join Date
    Apr 2014
    Halesowen, West Midlands
    Johnburton, sorry to hear that it might be hereditary. I was formally diagnosed ALS MND May 2014 and year befor had pain in left hip assumed it was to long in front row. Like you I used walking bits for two years but now fully in wheelchair, but can still eat if food mashed up. I had feeding fitted year ago but only put one bit in each day. Best of luck over next five years. Best wishes John.

  4. #4
    Thank you, Jay Tee. I plan a PEG too when the time arrives, hopefully some way off. I see you are 4 years in, so well ahead of me. It's quite a journey to be embarked on. Best wishes, John

  5. #5
    Forum Member
    Join Date
    Dec 2017
    Hi John
    Welcome to the forum and so sorry you find yourself here. You know what is ahead with your mother having it, but you have the right attitude .

    I too was diagnosed with limb onset ( legs ) on my first visit to neurologist , but I was suffering the year before .

    Best wishes
    Love Chris

  6. #6
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hello and welcome John.

    You appear to have a positive attitude and this will help you greatly in coping with MND. I’m sorry to hear hear that your Mum also had this disease and I can’t imagine what’s going through the minds of your siblings.

    As you suggest, living with MND is improved by technology and I’m sure we will see more advances with AI playing a greater role.

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

  7. #7
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi John and a warm welcome to the Forum.

    Sorry your family has had to experience ALS before.

    Where would we be without technology eh? I, for one, would have a different life without it.

    Take care,

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  8. #8
    Thank you all for your sympathy and responses. I forgot to mention that one of my most valuable colleagues while I was still working got MND. He was determined to stay working as long as possible and managed that, even when wheelchair-bound. He had a wheelchair topper fitted to his car, so could travel to and fro from home to office. He remains an inspiration, showing that it is possible to keep active and involved in life well into the disease. His mind remained as sharp as ever.

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