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Thread: Dad diagnosed with MND

  1. #1
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    Dad diagnosed with MND

    Hello everyone. My name is Katie (25) and I am the daughter of Trevor (TPS) who was diagnosed with MND in Nov 2018, but suffering with symptoms starting in the bulbar area for the past two years. Secondly effecting hands and arms and now slowly effecting his legs. My dad has now lost his speech and uses his iPad to communicate. I think itís pretty cool what technology can do now a days and how much it helps my dad. He will be able to do his father of the bride speech for my sisters wedding using his text to speech app, which is very special. He can even change his new voice to a ladies if he really wants, that will embarrass my sister at her wedding, haha.

    I live abroad (another reason I am thankful for the use of iPads to communicate) so this forum will be great for me and help answer some of my questions, rather than google! Does anyone else have a family member dealing with this illness that they donít get to see much?

    My dad is in good spirits, which helps him and the rest of the family. Like he says, ďone day at a time.Ē

    Take care and wishing you all enjoy your life and life with loved ones as much as you can

  2. #2
    Forum Member Lynne K's Avatar
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    Nov 2017
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    880
    Hi KRSmith,
    I'm sorry about your dads diagnosis and symptoms. Welcome to our forums. 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.

  3. #3
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    Quote Originally Posted by Krsmith View Post
    Hello everyone. My name is Katie (25) and I am the daughter of Trevor (TPS) who was diagnosed with MND in Nov 2018, but suffering with symptoms starting in the bulbar area for the past two years. Secondly effecting hands and arms and now slowly effecting his legs. My dad has now lost his speech and uses his iPad to communicate. I think itís pretty cool what technology can do now a days and how much it helps my dad. He will be able to do his father of the bride speech for my sisters wedding using his text to speech app, which is very special. He can even change his new voice to a ladies if he really wants, that will embarrass my sister at her wedding, haha.

    I live abroad (another reason I am thankful for the use of iPads to communicate) so this forum will be great for me and help answer some of my questions, rather than google! Does anyone else have a family member dealing with this illness that they donít get to see much?

    My dad is in good spirits, which helps him and the rest of the family. Like he says, ďone day at a time.Ē

    Take care and wishing you all enjoy your life and life with loved ones as much as you can
    Thank you my beautiful daughter ❤️❤️

  4. #4
    Forum Member Barry52's Avatar
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    Mar 2012
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    2,300
    Hello Katy and Trevor.

    Welcome to the forum family.

    Our son lives in Tokyo and we are pleased that we can talk on messenger. He is returning to the UK in 2 weeks and he will get married to his Japanese bride mid August. Like your dad my voice has deserted me in recent weeks but I had recorded my speech a few years ago. Fortunately I don’t have to make any speeches at the wedding but I like the idea of your dad using a female voice. We certainly need a bit of humour when dealing with the challenge this disease brings.

    I hope that your sister’s wedding day is special and that your dad enjoys the occasion. I know that in a large group scenario the technology has it’s limits. If your dad has access to a Bluetooth speaker then I suggest he uses it.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  5. #5
    Forum Member Gillette's Avatar
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    Mar 2019
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    Hi Katie and Trevor and a huge welcome to the forum that no-one wants to join. There is a huge amount of knowledge, experience and support on here, all willingly shared, so if you have any questions just ask away.
    Dina


    Trying to keep positive, but not always managing.

  6. #6
    Forum Member Ellie's Avatar
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    Oct 2012
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    3,334
    Hi Katie and welcome to the Forum.

    I have family and friends abroad and am able to keep in contact with them. As you say, technology helps us, be it video calling, messaging or photos & videos, my family and friends keep me up to date with what's going on in their lives and vice versa.

    Actually, it's not just those living far away who use technology to chat to me - I 'see' more of people now than I did a few years ago!!

    Of course it's lovely to have visitors too but I get all the goss in between

    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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