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Mum diagnosed with bulbar palsy

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  • Martha
    replied
    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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  • Martha
    replied
    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

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  • Ellie
    replied
    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.

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  • Kayleigh
    replied
    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; 6 May 2019, 00:30.

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  • Martha
    replied
    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.

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  • Mandy124
    replied
    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.

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  • Martha
    replied
    Thanks Ellie, great advice re. water intake. Don't know why we hadn't thought of that one. And am deffo going to investigate the eye gaze technology! Brill. Love Martha

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  • Lynne K
    replied
    Thank you Martha and good luck for your mum sorting out her banked voice. Lynne x

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  • Ellie
    replied
    Honestly, taking water through my tube is so much easier and safer for me (and for anyone with swallowing issues)

    I sip water through a straw (silicone, no single use plastics!!) after my small lunch, tucking my chin into my chest makes it safer. I get most of my calories via my tube.

    She can try thickeners in her water by all means, they are available on prescription. Personally, I don't like it in water!

    I don't want to undermine the Nutritionist, but I think your mum should be assessed by a Dietitian if possible, initially at least.

    Take care,

    Love Ellie - typed using eye gaze

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  • Martha
    replied
    Hi Ellie

    Thank you so much for taking the time to get in touch. I don't think Mum has been given a daily calorie target intake but it's good to know that Fortisip can provide all the nutrients that she needs. Perhaps she may need to increase her daily intake? I will ask the question at her next appointment with Nutritionist.

    Although she doesn't use the PEG to feed she does flush twice a day and is very good at drinking water throughout the day although this is getting increasingly more difficult and she does tend to cough a lot as the water catches in her throat. I don't think anyone has recommended any thickeners to her but I'm wondering if this would help increase her water intake if she found water easier to swallow.

    I haven't heard of lightwriters or eye gaze systems so thank you for the tip, I shall do some research.

    Thanks also for the link to the support group...I will get in touch.

    Sending best wishes to you Ellie, really appreciate your help :-)

    Love Martha

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  • Martha
    replied
    Thank you Terry for the information and links :-)

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  • Martha
    replied
    Thank you Lynne. Yes Mum was also not happy with the accent that was captured as it was recorded over several weeks whilst she was struggling to talk, so I think she is going to ask for a standard voice to be added instead (rather than her MND voice) so her electronic voice will be clearer to those listening. You are right about Mum putting a brave face on...she is the most positive and cheerful person I know and maintains this approach wherever she goes and to whomever she meets but I realise that she's only human and must be scared and frightened too of what the future holds.

    Sending best wishes to you and thank you very much for taking the time to reply.

    Much appreciated :-)
    Martha

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  • Ellie
    replied
    Hi Martha,

    Sorry to hear about your beloved mum.

    Nutrition: does your mum have a daily target for calorie intake? Fortisip isn’t a supplement per se, but is nutritionally complete, so one could get all their daily needs from Fortisip alone. Calogen is just a high cal liquid, primarily taken to maintain weight or put it on. If it came to a point where she can no longer swallow safely, she can use a pump to deliver special food overnight or throughout the day, whichever suits best.

    Those 2 small meals should provide enough calories and be nutritionally complete, which isn’t always easy to do!!

    Does she take water through her tube?

    Communication: I’m sorry voice banking didn’t work out for her. An SLT should assess your mum’s needs and provide a solution - be it a lightwriter or eye gaze system (or it’s possible to do a DIY version cheaply) Sign language takes commitment and may be short-lived if PBP develops into ALS.

    Counselling: I’m sorry your mum lost her husband, she must be in a dark place still, and exacerbated by her diagnosis of PBP. Is she linked with her local hospice? She can get counselling there, which I thoroughly recommend.


    Progression: yes, unfortunately PBP can progress to ALS and can affect limbs, but not everybody does progress this way.

    Local Support: there are 2 Dorset support groups, details on https://www.mndassociation.org/getti...es/south-west/

    Please feel free to ask any questions on the Forum.

    Love Ellie.


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  • Terry
    replied
    Mnda East Dorset. 01202 780071 Email [email protected]

    Next meeting 30th May at "The Spire" Methodist Church High Street. Poole BH15 1DF

    http://www.mndedorsetandnforest.org.uk/index.htm

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  • Lynne K
    replied
    Hello Martha. I have no personal experience of bulbar palsy. But the voice bank I have done. I did the Model Talker and was not happy with the result initially. It didn't capture my accent very well and was far too Americanised. I contacted the Model Talker team and they set up where could record a lot of personal phrases, place names, addresses, telephone numbers and other personal words. They encorporated all this into my banked voice. The result was significantly better but still some strange sounding words when I type sentences on Predictive. That's the software on my ipad that uses my banked voice. People have suggested that there's a British voice banking service Acapela that captures British and European accents much better. With that one you only record about a quarter of what you have to do for Model Talker.

    About how your mum is feeling. She's most likely very scared but trying to put a brave face on it. Maybe somebody who's gone down the same route can give more particular incite.

    Look after yourself and please don't neglect your own opportunities for down time. Lynne
    Last edited by Lynne K; 5 May 2019, 16:52.

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