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Thread: Advice needed

  1. #1
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    Advice needed

    Hi everyone
    My mam was diagnosed with slow forming bulbar onset in October, there are good days and days pure panick with what the future holds, my mam can’t cough up phlegm she’s been given carbosistine for it it’s not working as well as it was is there anything other she can do about this ?? Her speech is getting worse, she’s feeling a weakness in her finger and shes got foot drop. How does this horrendous disease develop is it in stages any advice would be brilliant, sorry to go on
    Thanks rubyray

  2. #2
    Forum Member Ellie's Avatar
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    Hi Rubyray and a warm welcome to the Forum.,

    Sorry for your mum’s diagnosis.
    Quote Originally Posted by Rubyray View Post
    she’s been given carbosistine for it it’s not working as well as it was is there anything other she can do about this ??
    Yes, there are things to try to lessen, thin and loosen the secretions, making them easier to cough up:

    • The dose of Carbocisteine can be reviewed.
    • Drink pineapple juice which thins the mucus.
    • Use a saline nebuliser.
    • Drink plenty of water.
    • Use a Cough Assist and a suction machine.


    If the pineapple juice an drinking a decent amount of water doesn’t work, has your mum an MND Nurse or a Community Nurse who could organise the equipment if necessary?

    Quote Originally Posted by Rubyray View Post
    How does this horrendous disease develop is it in stages
    That’s hard to answer Ruby because the rate and path of progression varies substantially. With bulbar onset, you can generally expect swallow and speech to be affected but it’s impossible to know. Is your mum seeing a Speech & Language Therapist (SLT)? And an Occupational Therapist (OT) can assess her gait/walking and hand function and provide aids to make live a tad easier.

    I’m assuming your mum attends an MND Clinic where she sees a range of people, but she should be linked in with her local hospice, if not already.

    Remember to look after yourself too!

    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 Terry's Avatar
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    Hi Ruby and welcome to the forum,

    Sorry to hear about your mum's diagnosis and her current situation.

    Sometimes red grape juice or grapefruit juice can brake it down. Also try to make sure that she has plenty of of fluids but this can be hard without a feeding tube.

    There are other possibilities but it would be good to get a urgent referral to her SALT team.

    Best wishes, Terry

  4. #4
    Forum Member Lynne K's Avatar
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    Hi Rubyray, welcome to our forums. I'm sorry about your mum's fairly recent diagnosis.

    I agree with Ellie that the progress of mnd/als is so varied amongst sufferers that nobody, including neurologists can say with any conviction how fast any individuals degeneration will be.

    I see that you've had good advice about help with your mums coughing. Good luck with trying these
    Love Lynne
    Last edited by Lynne K; 1st February 2020 at 13:54.
    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.

  5. #5
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    Thankyou so much for your advice

  6. #6
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    I really appreciate it x

  7. #7
    Forum Member Terry's Avatar
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    Hi Ruby;

    Your welcome, let us know if any thing works or of any other problems.

    Love Terry

  8. #8
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    good afternoon ALL
    I am new the the MND forum, my wife has just been given the news and we are now coming to terms with it and all the effects
    at the moment she is ok but struggles with walking,she has been struggling with walking for about 9 months and as its gotton worse
    so the big "Q" is when will she NOT be able to walk ....how long does it take

    thank you to all and I wish everyone all the best

  9. #9
    Forum Member Lynne K's Avatar
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    Hi Mark. Welcome to forums and sorry about your wife's diagnosis. I'm afraid that nobody, even neurologists can determine any MND sufferers rate of decline, nor which symptoms she'll get from a collection of possibles. But as she's already having difficulty walking it sounds like she needs a walking aid. Also, she ought be given a light weight portable wheelchair from your local services. Your wife's OT can help with arranging for these. If your wife hasn't got an OT already then maybe ring her MND clinic and ask about one there. She'll also get the input of a speech therapist, Physiotherapist and when time is right wheelchair services.

    It'd be a good idea for your wife to start voice banking as a loss of voice happens for most. If you search the subject in previous posts you'll find discussions and information. Good luck with everything. It's good that your wife has you in her corner, but take good care of yourself too, 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.

  10. #10
    Forum Member Ellie's Avatar
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    Hi Mark and a warm welcome to the Forum.

    I am so sorry for your wife's recent diagnosis.

    Lynne's advice about getting walking aids, if your wife has none, is spot on - it is important not to fall.

    And, as Lynne also said, nobody can even give her even a guesstimate to your big Q, unfortunately, but if she has an OT assessment and gets braces or a walking frame (or whatever), your wife should be able to stay walking safely for longer.

    Look after yourself too, Mark.

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

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