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Thread: Lost my Father

  1. #1
    Forum Member
    Join Date
    Jan 2014

    Lost my Father

    Hi all,

    I'm not sure if this is the right place to post this, I also want to send my love to everyone living with MND.

    I lost my Father a couple of years ago. It took around 18 months. He was a former professional Ballroom dancer and it was devasting to witness his rapid decline.

    It kicked off a bad time for me, my marriage suffered and ended as a result, I also lost two other people close to me in quick succession. I've managed to pick myself up and am in a better place.

    I am however really struggling with the loss. I find the images of my Father difficult to shake and I have a constant, irrational fear that I have or am about to get MND myself. I have regular and vivid nightmares that this is the case. I've thought about trying to get a test to see my risk levels. I don't even know if that exists or if it is a good Idea.

    I feel like I always need to be "strong" about everything and sometimes I just breakdown. I'm an only child and parents were divorced so I have very few people to talk to about it.

    I'm not sure what I'm expecting here but I wanted to at least write this down in a safe place.

    Again, my love to all affected by MND.


  2. #2
    Forum Member AndyB's Avatar
    Join Date
    May 2017
    Stone, Staffordshire
    Hi Warren

    You've obviously been through a tough time over the last few years and this will have made you aware of your own mortality.
    When I was diagnosed with MND I was very concerned that my son might develop it too. However, it is quite rare for MND to be hereditary, I think it is only 5 - 10% of cases. (There is more information on this site) and no one else in my family has ever had this or any other neurological disease. So, I'm just unlucky.

    So, try not to worry, worrying is not good for you.

    Best wishes

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Warren;

    Sorry to here about your dad and the subsequent events.

    Like Andy says, it's not so common to have a hereditary type of Mnd. Especially if you know his parents and family have not had it.

    You can be tested for a few genes that are common for the hereditary type.

    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 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.

  4. #4
    Forum Member
    Join Date
    May 2017
    Jarrow, Tyne and Wear
    Hi Warren,

    I'm so sorry about your Dad. You have had such a difficult year.
    I think it would be good to speak to your GP and tell him/her how you feel.
    Like Terry, I think it's unlikely you have/will get MND.

    Take care,

    Last edited by Bern; 24th January 2018 at 09:39.

  5. #5
    Forum Member Rumba's Avatar
    Join Date
    Dec 2016
    Hi Warren

    So sorry to hear about your dad. Like the others say heredity mnd is uncommon chances of you getting it are small although I know it must prey on your mind. Speak to your GP and ask for a referral to be tested

  6. #6
    Forum Member
    Join Date
    Sep 2015
    Hi Warren

    I can relate exactly to your pain. I lost my own father to Bulbar Onset MND just over a year ago, his was a long 4-year journey that was really difficult to witness and be part of.

    Towards the end I had a terrible fear of only being able to remember him as he was in the last few months, but I found that keeping photographs of him from before his illness was the best thing for me - I look at them often and now find it difficult to think of him any other way.

    As regards the chance of getting MND myself, on diagnosis my dad was tested to see if it was a genetic problem he had, and my brother and I had to agree to this on the basis that a genetic fault might put us both at risk. It turns out that it wasn't genetic, it was just the luck of the draw. This doesn't mean that I don't still worry about it though - I do. No matter how many times you're told not to worry, I think it would be a bit weird if it wasn't in the back of your mind.

    If you believe you are having actual symptoms you should definitely see your GP. If they are anything like my doctor (who was also my dad's doctor) they will know exactly what your worries are and they can take steps to put your mind at rest.

    Please be kind to yourself. It's such a hard thing you've lived through, don't underestimate the time it will take to find some peace with it. I'm not particularly religious but I find it helpful to go and sit in church sometimes, and if you have no-one to talk to you will find someone there. Other than that, there are people on here who are always helpful and supportive. Keep posting, there are willing ears.

    Do let us know how you get on.

    Linda x

  7. #7
    Forum Member Tim-griffiths's Avatar
    Join Date
    Oct 2017
    Lambourn Berkshire england
    Hi warren.
    You have my deepest sympathy over your tragic loss not only of your father but the other you list in such quick succession too, I really feel for you at this time. Please keep posting it helps to hear from others who have or are going through the same experience's and as Linda says there is always an ear that will listen.
    My wife has mnd and i feel more comfortable talking to people on here who are experiencing the same as yourself, than I do to family members who, although try there best to understand, don't have any knowledge of MND.
    Best of luck and take care of yourself

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