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  • Hairbsb
    replied
    Thank you John. I'm at the first stage of bulbar palsy I believe. To be confirmed next week. I do not feel. So isolated now. The saliva escaping from my mouth is an issue also. Luckily I wear a mask on the bus otherwise the person in front would think its raining when I laugh

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  • John D
    replied
    I would just add radiotherapy on saliva glands to Ellie’s list. It worked for me until muscles in my mouth and lips weakened allowing saliva to escape although I like to think the problem would be worse without the RT. Let me know if you want more info.

    I have tried most of the meds in Ellie’s list which didn’t really work for me. I am using Hyoscine patches which work upto a point.

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  • Hairbsb
    replied
    Not as yet. I get my diagnosis on May 17 . Just feels like a nightmare right now in my mind. I just can't accept it. Thanks . I think I'll ask when I got to see the head neuro

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  • Claireflo
    replied
    It's totally understandable to react in that way, it's news no one ever wants to hear and there's a lot to adjust to. Have you been offered any psychological support? It might help alongside all the practical support the speech therapist, physio and OT will be able to offer.
    Hope you enjoy the salmon. Melting grating cheese into things like potatoes is another way to up the calories.

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  • Hairbsb
    replied
    Thank you all. I Really appreciate your input. I felt all was over to be honest and what's the point but there is lots of point. Just need to adapt from the lifestyle I had. I was sleeping alot I suppose that's how I coped but that isn't right. I need to get my head out of my @@@@ and stop feeling sorry for myself and just get on with it x

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  • Hairbsb
    replied
    Thank you. So much. I am trying to be positive x thanks for the food suggestions. I was a little plumper before all of this and now I'm getting slim which worried me. I funnily got my husbandto buy single cream and tinned fruit and I'm trying salmon tonight

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  • Claireflo
    replied
    Hi Hairbsb my dad has bulbar onset and he was put on glycopyrronium bromide for excess saliva. I've heard of drops that go under your tongue (I think they are called atropine as Ellie has mentioned). Hopefully a chat with the GP or neurologist will help identify what might be best for you.

    ​​​​​​​there's a scale in terms of the affect on your swallow which is normally assessed by a speech therapist and that looks at whether you would benefit from fork mashed / moist food through to pureed. My dad was a plain eater so tended to eat things like porridge, cottage pie, mash, veg, fish, eggs. His favorite was puddings, apple crumble with ice cream, angel delight, mashed fruit. He didn't have to think about cooking meals for a family. He was advised to add cream and butter to make foods more moist and get more calories in.

    Everyone deals with this situation, whether it's them or a loved one affected, in their own way but you don't have to do it alone when there's so many people here going through similar with lots of advice to offer from their experiences.

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  • Hope
    replied
    Have you looked at the MNDA guide to eating and swallowing. I am still eating ‘normal’ meals but have found this guide useful.

    https://www.mndassociation.org/app/u...de-2020-V1.pdf

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  • DeeH
    replied
    Hi

    If you look up soft diet. Or "soft and bited sized"

    Cottage pies, eggs ie smashed or poached

    Lots of different soups.

    Most things can be blended as well. The dietician can supply fortified drinks, so you are getting maximum calories per bite.

    I added cream to everything as eating can be tiring too.

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  • Hairbsb
    replied
    Well on 17 May. I am on hycosine but it doesn't make a difference. Thanks for replying I appreciate it as feeling quite isolated (my fault as I thought in my stupid mind I can do this alone and was being stubborn and idiotic) I was wrong. I have a care team just awaiting the diagnosis but even they know as they said have you read the letters. Well of course I have ! My swallowing is apparently a struggle but I just got used to it.

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  • Ellie
    replied
    Hairbsb When did you get the firm diagnosis?

    Yes, there are alternatives to hyoscine, including glycopyrronium, atropine, amitriptyline, Botox injections.

    Ask your MND Nurse, Neurologist or GP which might suit you best to try next.

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  • Hairbsb
    replied
    If anyone has any ideas would appreciate a reply as i am starting on the journey with bulbar palsy mnd which I am finding incredibly difficult

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  • Hairbsb
    started a topic Excess saliva

    Excess saliva

    I am using these patches which doesn't help for excess saliva. Are there alternatives? I need suggestions for soft food to swallow. I have googled. I need ideas as I cook for my family also and do nit want to be doing separate meals.
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