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Thread: Mum diagnosed with bulbar palsy

  1. #1
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    Mum diagnosed with bulbar palsy

    Hello

    I don't know if anyone can offer any advice? My darling Mum was diagnosed last October 2018 with MND bulbar palsy. Her symptoms started in Feb 2017 and her speech has deteriorated slowly since then. She commented last week that she doesn't think it will be too much longer before she will finally lose the ability to speak all together and also she is struggling with excess saliva and is finding it increasing difficult to eat mashed foods as the whole thing becomes too exhausting for her.

    She was fitted with a PEG in March but has been reluctant to use this. She is taking Fortisip (twice a day) and four spoonfuls of Calogen a day because that is what her Nutritionist has recommended. I am concerned that because she is barely managing to eat 2 meals a day that the Fortisip/Calogen supplements are not giving her all the nutrients she needs. She assures me that they are but is there anyone out there who thinks Mum should be receiving more in the way of supplements? Are there any others available?

    Although Mum has recorded a Voice Bank she was quite disappointed with the final result and the length of time it will take for her to communicate in the future. Can anyone offer any advice on alternative communication methods? I was thinking of all the family learning sign language but is this an unrealistic/unworkable idea? Are there any other technologies available?

    I am also worried about Mum's mental health in the coming weeks and months. She lost her husband a year before being diagnosed and is still grieving his loss. She doesn't share her worries and concerns with my brother and I because she doesn't want us to worry. Although I have asked her to share everything she won't because she's just being a protective Mum. I feel helpless and hopeless because I simply don't know how she is really feeling. Can anyone give me an idea of what she might be feeling/concerns she may have?

    She doesn't yet have any symptoms in her legs and arms but is it usual for bulbar palsy sufferers to eventually lose muscle control in their limbs too?

    Finally, does anyone know of any MND groups or people in the Dorset area who meet up for chats/advice and general support? I know that Mum would dearly love to meet with people affected by MND but no such support seems to be on offer through her designated hospital (Poole General).

    Thank you for listening. I just want to do the best I can for Mum but am struggling a little with knowing the right questions to be asking?

    Love Martha

  2. #2
    Forum Member Lynne K's Avatar
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    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; 5th May 2019 at 17:52.
    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.

  3. #3
    Forum Member Terry's Avatar
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    Mnda East Dorset. 01202 780071 Email secrtary@mndedorsetandnforest.org.uk

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

    http://www.mndedorsetandnforest.org.uk/index.htm
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member Ellie's Avatar
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    Hi Martha,

    Sorry to hear about your beloved mum.

    Nutrition: does your mum have a daily target for calorie intake? Fortisip isnít 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 isnít always easy to do!!

    Does she take water through her tube?

    Communication: Iím sorry voice banking didnít work out for her. An SLT should assess your mumís needs and provide a solution - be it a lightwriter or eye gaze system (or itís possible to do a DIY version cheaply) Sign language takes commitment and may be short-lived if PBP develops into ALS.

    Counselling: Iím 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.


    ​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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    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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    Thank you Terry for the information and links :-)

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    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

  8. #8
    Forum Member Ellie's Avatar
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    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
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #9
    Forum Member Lynne K's Avatar
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    Thank you Martha and good luck for your mum sorting out her banked voice. Lynne x
    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
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    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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