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Thread: Hello

  1. #1
    Forum Member
    Join Date
    Dec 2017
    North Somerset


    It's taken me nearly a year to do this, but here we go... My husband was diagnosed with ALS / MND in May last year , though we can track symptoms back to December 2016. He is 52 and we have a 14 year old daughter - is there anyone out there in a similar situation / age bracket? I have been put off joining by marketing pictures of much older patients and scared senseless by information of what the future holds. His decline is relentless, from not being able to lift his arms above waist height a year ago, he now has no use of his arms, he can't hold his head up, and his legs are getting weaker by the week. He can still speak, swallow and breath ok but there seems to be no let up - such a cruel, cruel disease

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Tanglewood and welcome to the forum,

    Sorry to hear of your husband and your situation. I am one of the older people, well a little older.

    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.

  3. #3
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Tangle,

    Welcome to the forum, I'm glad you posted. Sorry about your husband's diagnosis.

    There are quite a few of us young ones here on the forum, you'll be glad to hear!! I'm 49 and my daughter is also 14 (my son is 16)

    Yes indeed, it is very scary. Sometimes the progression comes in phases and then we stabilise for a period. But I think we can all agree that it isn't the best condition to be diagnosed with!

    Have you got good supportive friends & family? And your daughter too - is she doing OK?

    Does your husband manage to use a PC with voice commands, or maybe eye gaze?

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

  4. #4
    Forum Member
    Join Date
    Sep 2012
    Welcome Tanglewood

    Its good you decided to post here because you will get a lot of support, advice, and knowledge from forum members that truly understand what you, your husband, and family are experiencing. Someone here will always have an answer to the questions you may have pertaining the daily challenges, and struggles this illness can come with.

    Wishing you, and your family all the best.


  5. #5
    Forum Member Streetwise's Avatar
    Join Date
    Dec 2016
    hello tanglewood i'll try not to say too much or I'll probably be criticised! my mam was 51 when she was diagnosed with pseudo bulbar palsy that progressed to ALS,people always said I looked older than her . I had never experienced the word relentless until she was completely paralysed .
    her symptoms started to me January 1997 -someone noticed when she did a radio interview that her speech was slurred .
    then what I call 'it 'progressed down her left arm -she indicated to me the fasciculation in her forearm! more shock !I'm autistic so I was very close to my mother, i knew life was going to end for me so did she.
    it's 18 years later all I've done is exist

  6. #6
    Forum Member
    Join Date
    Nov 2017
    Hello Tanglewood, sorry to hear that you have been dragged into this horrendous world of MND, my daughter is 33 diagnosed in Sept last year and has an 8yr old daughter and a 10 month old son, symptoms starting two weeks after the baby’s birth, the whole family is devastated and I wish it was me and not her.

  7. #7
    Forum Member
    Join Date
    Feb 2018
    Hi Tanglewood
    My husband had a similar start and symptoms to yourself. He is 65 so a bit older, bit looks at least 10 years younger and was fit as a fiddle before all this. I am 55. It is a terrible disease. You will get lots of support here. I respond for my husband as well as myself as he is struggles to type.

  8. #8
    Forum Member
    Join Date
    Dec 2016
    Norwich, UK
    My best friend/housemate was diagnosed Dec 2016, but looking back we suspect she had MND about a year before that.

    She went to her Dec 2016 appointment on crutches, barely, but still could manage with crutches. Her Feb followup appointment was in a wheelchair. There has been a steady, noticeable change, every 2 weeks since about then. She's now bed bound, has a feeding tube, can't talk, eat or drink. She can lift her head, a little, can shake her head, use her eyes and almost lift her left forearm off the bed. But that's it.

    She's 46. I had a childhood friend who lost the battle with MND at 48.

    MND, at its very best, is horrific, and it does not discriminate based on age.

    Hanging in there, one day at a time.

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