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Thread: Father, unofficially diagnosed with Bulbar Onset

  1. #1
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    Father, unofficially diagnosed with Bulbar Onset

    Hi all,

    Firstly, this place looks like a phenomenal community, props to each and every one of you for making it so.

    On to my dad, since the summer and up until a week ago, thought to have a form of Silent reflux, causing him to have speech issues , occasional coughs and a few other symptoms. He went through the system eventually seeing ENT & Neurology who after a 40 minute chat and observation suggestly it was likely MND in some guise, likely Bulbar, due to the speech and mucus issues.

    Alongside this ,hes hit been hit my a major bout of fatigue, rather suddenly over the past 3 weeks, In work on the Monday three weeks ago, looked fatigued, so i prompted him to take the tuesday off, subsequently has never been back.

    Taking him private to expedite the testing to confirm or moe forwards otherwise as the NHS suggest a 40/50 day wait time, instead we should have an idea in the next week now.

    A few questions, I cant seem to find much info on, which I help some of you Stars may be able to help with:

    1) Is severe fatigue coming so quickly and for such a prolonged period common? I struggle to get more than 15/1600 calories into him, mostly the right foods, often in view of tackling the fatigue, Starting to wonder if the letargy is just indefinite? Do dextrose and the like ever help?

    2) Pro tips on mucus busting?

    I appreiate any advice anyone can offer

    Many Thanks

  2. #2
    Forum Member Ellie's Avatar
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    Hi HC & welcome.

    Sorry to hear of your dad's woes and potential MND diagnosis.

    Irrespective of what his diagnosis is, infections (notably chest & UTI) and pneumonia should be ruled out as a cause of his fatigue.

    How is his breathing, especially in bed - sleeping well, muzziness or headache on waking?

    If he can swallow safely, balanced nutritional drinks (Fortisip & Ensure) can supplement dad's inadequate calorie intake. (GP can prescribe)

    He also needs to drink ~2 litres a day which helps thin mucus. He can try pineapple or papaya juice as their enzymes cut through thick mucus. The go to medicine is Carbocisteine, but dehydration makes for thick secretions. Can he cough it up?

    When he sees the Neuro, it's important he gets an EMG test, though it is unlikely to be done on the day.

    Best of luck to him and I hope it turns out not to be an MND.

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

  3. #3
    Forum Member Kayleigh's Avatar
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    Hi Hardcastle,

    Welcome to the forum. Sorry to hear that your dad is so unwell.

    Is your dad's food intake limited because he has problems swallowing? If so, it may be good if he eats softer foods such as mashed veg, fruit smoothies, cottage pie, spaghetti bolognese, porridge, soup, stewed fruit, milkshakes, individual pot desserts such as custard, trifle and chocolate mousse, soup, and soft fish rather than chewy meat. These days people tend to use low fat spreads and semi-skimmed/skimmed milk but using butter and full-fat milk instead will help to boost his calorie intake. If he is having trouble consuming large meals in one go he could try smaller meals/snacks throughout the day - if you buy ready meals then maybe the children's ready meals would be an ideal portion size if he is struggling with the standard portion size. There are nutrition drinks such as Complan that you can buy from Pharmacies such as Boots and these mixed with full fat milk will help to boost his calorie and vitamin/mineral intake (but as Ellie says, you could ask his GP to prescribe something).

    I hope that all goes well at your dad's private neurology appointment. Just a little advice - although you are going down the private healthcare route, please don't cancel any appointments that you are given with the NHS. This is because if your dad is diagnosed with long-term neurological condition, he will need long-term healthcare from the NHS and to receive this he will need to stay with an NHS neurologist/within the NHS Neurology system.


    Best wishes

    Kayleigh x
    Last edited by Kayleigh; 1st December 2018 at 19:48.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  4. #4
    Forum Member Barry52's Avatar
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    Hello Hardcastle and welcome to the forum.

    Sorry to hear about your dad. As Ellie says the fatigue may not be MND related, assuming that is confirmed as a diagnosis. I find that a daily glass of pineapple juice helps me with the break up of mucus.

    I also went private initially and I had a number of tests over 3 visits, including emg and mri. The consultant wanted me to have a second opinion and I was referred to an nhs MND special centre within 2 months. As Kayleigh suggests make sure your dad doesn’t lose touch with the nhs.

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

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    Thanks all for the prompt and informative posts, it's much appreciated !

    Yeah his gp mentioned fortiSip citing it was an expensive option so couldn't endorse it etc etc , needless to say i primed it and it came the next day , seems to help somewhat ( the 125ml bottles work out at a calorie per ml I believe) just loathe to totally commit to them as we don't know exactly what the issue is and there's still that shellshock

    The food intake is more low because he has lost his appetite , he does struggle with food to an extent , i.e smaller bites but it's the loss of appetite that seems to be key at the moment? No idea if that's the worst of the manageable symptoms but it feels like , just can't seem to generate an appetite but then his exercise is limited to toilet trips and trips around Tesco for 20/30 minutes , he's strong in the sense of leg power and strength in hands so the fact it's the fatigue / loss of appetite that seems to major (obvious) hindrance

    Hadnt really thought of the fatty spreads and such , thanks for that ! Appreciate both your welcoming posts but also advice very much!

  6. #6
    Forum Member Kayleigh's Avatar
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    Hello Hardcastle,

    Glad that you found the advice helpful. We are not medical people but we try to offer whatever advice and support we can.

    You are a kind and caring person and it sounds like you are doing everything you can to support your dad at this difficult time.

    It is disappointing that your GP wasn't helpful by refusing to prescribe nutrition drinks. It is concerning that your dad has lost his appetite and it is important that he does not become underweight - if he does lose a lot of weight it may be worth you flagging this up with his GP again. Sometimes people lose their appetite due to stress/anxiety and this must be a very worrying time for your dad. Whatever the reason for his loss of appetite, I send your dad my encouraging wishes for him to try and eat more.

    Please make sure that you are looking after yourself as well.

    Best wishes

    Kayleigh x
    Last edited by Kayleigh; 1st December 2018 at 22:59.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  7. #7
    Forum Member EmilieT's Avatar
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    Hi, all!
    It's really hard to hear about your dad such things . I have similar situation but this problem happened with my mum. And I don't know what to do...I'm scared ((

  8. #8
    Forum Member Terry's Avatar
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    Hi Emilie and welcome to the forum,

    I'm sorry to hear about your mum. It can be very scary but please feel free to ask any questions or share things with us.

    We can help with most things.

    Best wishes, Terry

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    Kaleigh,

    thanks for the above- saw a brilliant nuerologist who suggested the appetite loss for similar reasons to those which you cited. It's actually picked up somewhat over the past few days, On the NHS point, fortunately, the Neurologist we saw is firmly linked into the NHS and has expedited the tests and put us in touch with the local care group etc

    Hopefully will have some idea on the scope of this in the coming week through tests etc

    Thanks all!

  10. #10
    Forum Member Terry's Avatar
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    Hi Hardcastle and welcome to the forum;

    I also booked to see a neurologist privately that was attached to the NHS, but fortunately the NHS came through and I could cancel it. Seeing one normally short cuts the system to get the tests done and a diagnoses earlier.

    How dad feels a bit better.

    Best wishes, Terry
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