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Thread: My Dad has bulbar onset life expectancy

  1. #1

    My Dad has bulbar onset life expectancy

    Hi all,

    Thank you for contributing to this forum I have found it very useful. My heart goes out to all those suffering.

    My dad is 73 and he was diagnosed with bulbar onset 4 weeks ago. We now think symptoms existed 18 months prior and he saw lots of specialists and lots of other possibilities were investigated. After sudden weight lost, right hand muscle wastage, slurred speech and swallowing issues he was sent to see a specialist and given an immediate diagnosis. He has his erg muscle test soon and results 7 days later .... will this test give more of an idea of life expectancy?

    With dads above symptoms they seem to be getting worse and our mnd nurse said they may get worse due to the shock of the news and slow down. Dad is walking fine and he can still use his hands. He is eating very well and trying his best with his proteins drinks to maintain his weight.

    I appreciate every case is different but I need some hope has anybody had these symptoms and still living past a year. Iím sorry if this upsets anyone but for our family it feels dad is dying fast and I would love to hear stories of people living with bulbar onset

    Many thanks

  2. #2
    Forum Member Terry's Avatar
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    Hi worried son and welcome to the forum;

    Sorry to hear about your dad's diagnoses.

    A EMG can quite often give some idea o how fast the Mnd will progress but it is a indication only.

    Many people with these symptoms last very over a year.

    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
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    Hi WS and welcome.

    Sorry about your Dad’s diagnosis.

    To answer your question, no, the EMG cannot predict life expectancy - it will reconfirm his diagnosis in conjunction with his clinical findings.

    For now, the most important thing he can do is to regain the lost weight and to maintain it. Short term, nutritionally complete drinks (Fortisip, Ensure) are available on prescription but the ability to swallow safely is often quick to go with Bulbar onset, so a feeding tube can increase life expectancy not only as a means in providing nutrition, hydration and meds, but to avoid aspiration pneumonia caused by poor swallow function.

    Another tool to increase life expectancy is breathing support. Of course, it’s your dad’s choice to have these interventions, or not.

    And yes, plenty of bulbar onset people survive longer than a year.

    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 Kayleigh's Avatar
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    Hello worried son,

    Welcome to the forum. I am sorry to hear of your dad's diagnosis.

    There is a lot for you and your family to come to terms with, but you will find lots of support and advice here and elsewhere, which will hopefully help.

    Since my diagnosis, I have found that accepting as much support as I can has really helped to ease the shock of my diagnosis, and it has also helped me and my family to move on with living life as positively as possible. In addition to this forum, you will also find lots of friendly and helpful support/advice from your dad's local Mnda Regional Care Development Adviser (RCDA), and also at local MNDA group/branch meetings.

    Terry and Ellie have already offered you some helpful information in answer to your question about the EMG and life expectancy. If I may, I would like to offer you some advice concerning life expectancy, that my neurologist gave me - he said that although data exists concerning average life expectancy, the rate of progression for each patient is different and can vary greatly. He also advised that many medical interventions and positive things exist which may help to extend the life of an MND patient, as well as improving their quality of life.

    From you post, it sounds like you have already been very pro-active in finding out what you can about MND so that you can help your dad. It is great to hear that you are such a wonderful son and that you are already doing everything you can to support your dad.

    I notice from you post that your dad has already got an MND nurse. The nurse should be able to let you know which other medical professionals your dad should be seen by (free of charge) e.g a speech and language therapist, a dietitian, an occupational therapist and a physiotherapist. Hopefully the nurse sees your dad on a regular basis and/or he will have regular appointments with his neurologist/at an MND clinic - so that he can be monitored and any medical interventions (such as having a feeding tube fitted) can be offered to him, as and when appropriate.

    As you have already been pro-active in reading information on this forum, you may have already read the posts in the thread 'Mum with MND'. The advice (and links in my post, which is the 3rd post in the thread) may be helpful to you - and so In case you haven't already seen it, I have provided a link it, below:-

    http://http://forum.mndassociation.org/showthread.php?8921-Mum-with-MND&p=86538#post86538

    Very best wishes to you, your dad and the rest of your family,
    Kayleigh x
    Last edited by Kayleigh; 12th January 2019 at 15:16.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  5. #5
    Forum Member Barry52's Avatar
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    Hello worried son and welcome to the forum.

    I’m sorry to hear about your dad’ diagnosis and I can’t offer any more advice than our friends have already signaled but you can be sure of moral support when you need it. Try to encourage your dad to eat a high fat diet as well as the nutritional drinks.

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

  6. #6
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    Welcome. You will get lots of advice and support on here. My Husband asked for a prognosis when he was diagnosed last July and they couldnt say, they said everyone fares differently, from emg they said he had had it a few months no more than a year and it was exactly s year since he had noticed weakness in one arm whilst fishing in Ireland. Morning headaches followed and they were unable to bring him round from an hip replacement op in january, he then started with the breathlessness and after diagnosis was given a nippy machine. Hes maintained his weight and sleeps well, he uses cbd oil.

  7. #7
    Forum Member Kayleigh's Avatar
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    Hi W. Son,

    Following on from what Barry suggested about a high fat diet, my dietitian advised me to use butter instead of low fat-spreads and full-fat milk instead of semi skimmed or skimmed.

    If you dad does start to have difficulty swallowing the food he regularly eats, he may benefit from eating smoother foods. Hopefully, he will be able to get advice from an NHS dietitian, but in the meantime these are some of the 'smoother food' suggestions from my dietitian: porridge; ready brek; fish pie; shepherds pie; spaghetti bolognese; softer meat, such as chicken instead of steak; soft fish such as cod, haddock, plaice and salmon; meat spreads; tuna mayonnaise; fruit smoothies; milkshakes; cheese spread; grated cheese; ice-cream; pot desserts such as mousse, trifle, custard and rice pudding; stewed fruit; smooth soups; and mashed vegetables.

    You might have already seen the info on the MNDA website about 'swallowing eating and drinking' (link provided below):-

    http://https://www.mndassociation.org/about-mnd/living-with-mnd/eating-and-drinking/

    Best wishes,

    Kayleigh
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  8. #8
    Wow thank you all for your comments which are so helpful and kind of you. This is an amazing forum for sharing information in a kind and informative way. Many thanks. We will keep going one day at a time and I will shared an update after Dads next appointment. My best wishes to you all on this site

  9. #9
    Forum Member Kayleigh's Avatar
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    Hello w. son,

    Thank you for your kind message.

    That's a good idea to take one day at a time. Also, wonderful that you are researching as much as you can so that you can support your dad. This is not an easy situation for anyone to deal with - you should be proud of yourself for being such a thoughtful and caring son!

    Best wishes
    Kayleigh x
    Last edited by Kayleigh; 12th January 2019 at 23:00.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  10. #10
    Hi all,

    As an update and thank you again for your replies which were all helpful. My Dad had his neurologist appointment and official confirmation was given from the tests that he had the previous week. He received lots of useful information to help him as much as possible.

    I would appreciate your views on the following: A month ago his SNIP results was 59 and it has now dropped to 51, is this a concern?

    Thanks
    WS

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