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Thread: Mum diagnosed with bulbar palsy

  1. #11
    Forum Member
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    Sep 2017
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    Hi Martha my husband has bulbar on set and has it for 2 years he finds paper and pen quicker for communication he has predictable on an iPad but finds it too slow. We were advised not to use straws as the risk off choking is high so he keeps away from that, he has a peg recently fitted which he only flushes through each day but is ready there if needed he still manages food as his swallow is still ok. As for drinking he could not drink fluids without thickened which he uses with tea, coffee etc. We have a high powered blender which he makes fruit thick shakes with drinking yoghurt (the more fruit the thicker the drink) so these he can still mange without thickener it's a bit of trial and error. There are build up powders that are out there too which add more calories to the shakes so you could give them a try too, hope it goes well,

    Mandy.

  2. #12
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    Oct 2018
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    Thank you Mandy. Mum has actually just started to blend frozen fruit because she can no longer tolerate anything which has a skin on, like blueberries, grapes, etc but adding a drinking yoghurt to the mix sounds like great idea. Thank you for taking the time to reply.
    Sending best wishes to you and your husband.

  3. #13
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    England
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    737
    Hello Martha and a warm welcome to the forum,

    I realise that other folk here have probably answered all or most of your questions - and so hopefully I will offer you information without duplicating what they have already told you.

    Concerning speech and communication, the MNDA have a factsheet (7c Speech and Communication Support) and there is also some information about 'free or low cost apps' that might be useful:-

    http://https://www.mndassociation.org/wp-content/uploads/07c-speech-and-communication-support.pdf

    A link to the MNDA's webpage about free and low cost apps (including communication apps):-

    http://https://www.mndassociation.org/about-mnd/information-resources/free-or-low-cost-apps/

    In addition to your mum's local branch of the Mnda, there is also a local Mnd Adviser who you or your mum may wish to contact. Her name is Louise Rickenbach (South Central - including Dorset) and her contact details are included on the MNDA's list of Advisers (17th down from the top of the list):-

    http://https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

    Perhaps your mum has already been referred to a hospice (and so I apologise if this is information you are already aware of), but if not, she might wish to consider being referred to one (so that she can visit it for some relaxing therapies etc). Many hospices have their own websites, which include details of the services that they offer - for example, this a website of a hospice that is located In Poole (it also has a support group for carers):-

    http://https://lewis-manning.co.uk/our-services/

    Please feel welcome to join in on this forum, as often as you like - we are a friendly forum and we try to support each other as much as possible.

    Love and best wishes to you and your mum,
    Kayleigh x
    Last edited by Kayleigh; 6th May 2019 at 00:30.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  4. #14
    Forum Member Ellie's Avatar
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    Oct 2012
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    Dublin
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    Martha, I don't think your mum needs eye gaze if her hands work well.

    There are the low tech options of pen & paper or a small white board, or the higher tech text-to-speech apps to try out and see which best suits your mum.

    As Mandy said, pen & paper works well for her husband - there is a solution out there which will suit your mum.

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

  5. #15
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    Oct 2018
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    Thank you Kayleigh for the useful links and info. Much appreciated :-)
    As you say, this is a great forum with lots of helpful and supportive advice. It's good to know that there are people out there like you.
    Sending love and best wishes back xx

  6. #16
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    Oct 2018
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    8
    Thanks Ellie, yes I'm sure you are right. I'm just looking for the best and least-frustrating form of communication for Mum but it sounds like the good old-fashioned pen & paper will be her best option at the mo. Take Care, Love Martha x

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