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Thread: Dad recently diagnosed

  1. #1
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    Dad recently diagnosed

    Hi

    My dad was diagnosed with MND 2 weeks ago. It has been a real shock to us all.

    I am looking for a bit of advice regarding my brotherís wedding, he is due to get married in November next year and now he is a dilemma whether to move it forward.

    Thanks

  2. #2
    Forum Member Barry52's Avatar
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    Hi Deels,

    Welcome to the forum and I’m sorry to hear about your dad but he will be made welcome here when he feels ready. It is impossible to answer your question because the disease progression is different in every person. He may be like me and many others with slower progression and even if he has ALS he may have several years. I suggest your brother leaves his plans as they are and watch dad’s progress over the next few months. Even the experts can’t give a prognosis other than to quote the average of 2-5 years.

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

  3. #3
    Forum Member Terry's Avatar
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    Hi Deels and welcome to the forum;

    Sorry to hear about your dad's recent diagnoses.

    It probably would be nice to move the wedding to sooner if it's OK with them but not imperative.

    Your dad's and his families emotions will all over the place so it might be good for him to not know about people moving weddings for him for a while.

    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.

  4. #4
    Forum Member Ellie's Avatar
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    Hi Deels and welcome.

    Sorry to hear about your Dad's diagnosis.

    It's really hard to say how your dad will be in 13 months time but... if you could tell us a bit about him please?

    How is he now?

    Does he have ALS/MND or a different variant?

    What were/are his symptoms?

    How old is he?

    It may give us an idea of how he might be next year, but unfortunately it is almost impossible to tell.

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

  5. #5
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    Thanks all for you kind thoughts, I did think it might be an impossible question!

    My Dad is 65 and currently has slurred speech, loss of grip strength and spasms in his arms. They have not specified a type to him as yet.

  6. #6
    Forum Member Lynne K's Avatar
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    Hi Deels. Sorry about your dad. I think best wait until he sees a specialist and has the usual tests ie nerve and muscle conduction tests. These help the neurologists determine the stage of the disease and sometimes with some symptom history a prognosis. I say sometimes because in my experience the neurologists like to play it safe and not give a prognosis because we are all different. It must be a big shock to you all, not least your dad. 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
    Forum Member Tim-griffiths's Avatar
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    Hi Deels
    Sorry to hear about your dad, personally I think I would wait and just watch his progression, the slurred speech sounds like bulbar palsy and the loss of grip could be als ( sound exactly the same symptoms as my wife when she was diagnosed last October Who had both of the above ).
    As stated previously progression varies in each individual so there is no set time limits, just educated estimates from the neurologist.
    It has obviously come as a big emotional shock to the whole family, and not least of all your dad, who has been diagnosed with this awful condition, but a strong family and good friends who can help and give support will help tremendously, I've no doubt a good support team will be put in place and you will receive all the help they can provide. You will find that people here will try to help and be informative to the best of their ability as they have or are going through similar experiences.
    Take care
    Tim and Mary
    Last edited by Tim-griffiths; 2nd October 2018 at 07:33.

  8. #8
    Forum Member Ellie's Avatar
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    Thanks Deels.

    If your Dad's first symptoms were speech-related, his diagnosis may be Bulbar onset ALS, but his consultant will verify which type of MND he has. It can make a difference to his "likely" progression and prognosis.

    Breathing is the biggest predictor of survival.

    For now, he should stay as healthy as possible - eat well, get the flu shot & the once off pneumonia vaccine, avoid coughs & colds and don't fall!

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

  9. #9
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    Thanks everyone for your thoughts and advice. It is helpful as I am completely clueless about all this!

  10. #10
    Forum Member Terry's Avatar
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    Hi Deels;

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

    Love Terry

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