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Thread: Hello I'm Matthew and I am 54

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  1. #1
    Forum Member matthew55's Avatar
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    Hello I'm Matthew and I am 54

    About 4 months ago I went to my GP to ask about my voice changing and on 05/05/2020 I was diagnosed with Bulbar onset motor neurone disease. Today my voice is nearly gone along with my tongue and throat. My strength and mobility are as normal. Oh and I can still cough and turn in bed.I live alone with no kids or pets and to be honest I am happier now than during any of my three marriages. While I am here can anyone recommend a text to voice device with proper volume control? Stay safe on these mad times.

  2. #2
    Forum Member Ellie's Avatar
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    Hi Matthew and Welcome to a forum nobody wants to join...

    Ordinarily your speech & language therapist (SLT), assistive technology service (AT or AAC) would be a good source for info and devices but these services might be slow right now, but I'm sure someone will answer your question shortly.

    What are you using at the moment? And is the problem that the output is too low? Have you tried bluetooth speakers?

    In the meantime, if you haven't done so already, perhaps contact your SLT, either in your MND Clinic or in the community or your MND Nurse to get the ball rolling - I'm aware you're not long diagnosed so may not have been allocated community services yet, particularly at this time, which is why maybe your hospital clinic is the best option?

    Has a feeding tube been discussed yet? Sorry, I know your diagnosis is new and probably still raw, but if your swallow isn't great, it's something to think about . If you decide to get one, sooner rather than later is the mantra, especially for bulbar onset folk.

    Take care.

    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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    Quote Originally Posted by matthew55 View Post
    About 4 months ago I went to my GP to ask about my voice changing and on 05/05/2020 I was diagnosed with Bulbar onset motor neurone disease. Today my voice is nearly gone along with my tongue and throat. My strength and mobility are as normal. Oh and I can still cough and turn in bed.I live alone with no kids or pets and to be honest I am happier now than during any of my three marriages. While I am here can anyone recommend a text to voice device with proper volume control? Stay safe on these mad times.
    Hi, I'm in the same boat, I have the same diagnosis. I am going to start voice banking tomorrow before my voice goes too badly. I'm starting research into similar apps so I will keep you posted.

  4. #4
    Forum Member Lynne K's Avatar
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    Hi Mathew, welcome to our forums. I’m sorry about your recent diagnosis and that you’ve lost your voice. Do you have anybody’s in your family with a similar voice to you? If so, would they be prepared to do voice banking for you so that you can type and have your own voice, (or near to it) be said by Predictable or other text to speech software. There is standard electronic voices but most people prefer a familiar voice. If you put ‘ voice banking’ or ‘ text to speech’ in the search messages box then many posts about this subject will come up. Though I’m sure that you will receive other information.

    Good luck, 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.

  5. #5
    Forum Member matthew55's Avatar
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    Thanks for all the great advice and kind words. I am checking my voice every morning with Alexa so not quite mute yet thankfully. Oh and apparently I am one of the front runners for a PEG if things can return to some kind of normality.

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    Welcome Matthew. Although no one wants a MND diagnosis, you seem to have had the diagnosis quickly. Please don’t hesitate to ask questions - someone on the forum will usually have an answer or can point you in the right direction. If eating becomes difficult, it’s best to make sure you have soft Food which can slide Down easily. Adding cream or butter also fortifies veg etc which helps prevent weight loss. MND association have an excellent guide to eating and drinking.

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    Hi Mathew, I was diagnosed with the same bulbar MND 16 months ago, did a voice bank but it wasn’t very good and I’ve been trying Predictable but really not happy with it. Now started Proloquo2Go and Proloquo4text which are much better and AssitiveWare who own them have been very helpful with advice etc. Even though I have lost my speech and swallowing now and have a PEG I am still physically ok which they said was quite possible with Bulbar. Well done for booking the PEG, now is the time to have it done whilst you’re still well enough. Regards David R

  8. #8
    Forum Member matthew55's Avatar
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    Thanks David, this is why I came here, to meet people who are living it. I know that my diagnosis was fast and it's just one more thing to deal with I guess. I wish I was just doing this for attention.

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    Hi Matthew and a warm welcome to the forum from me !

    I am very sorry for your recent diagnosis and that you're losing your voice. It's good you've found the forum because it's a good place for friendship and support.

    .
    It sounds like you have a positive attitude, which will help you and that you've been proactive finding the technology to help and getting a PEG. Organising things must be difficult in the current circumstances.

    Take care of yourself,
    Love Debbie x

  10. #10
    Forum Member matthew55's Avatar
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    Hello Debbie, it's very nice to meet you x

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