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  • PeterPan
    replied
    David71 So sorry to read your post, and you’re welcome and among friends here. So many different people with different experiences. Just one thing in common.

    Best wishes

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  • EvelynMW
    replied
    David71 You will have had contact with Ellie who has survived for 14 years. My own case is over 3 years with very little changing. If ones attitude can be improved, he will probably live much longer and fitter than he imagines. Perhaps get him onto the forum for himself.

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  • Ellie
    replied

    Oh David, that's heartbreaking to read. Did your son every get psychological help?

    Originally posted by David71 View Post
    ... how best to help him through what I believe are his final days,
    Are you saying your son has physical symptoms which lead you to believe he's in his final days? If so, he should be under the care of a palliative team.

    If you think his psychological state is such that he doesn't want to face life any longer, you should talk to his GP (fwiw)

    I think you should ring the MND Connect Helpline and talk to them, 0808 802 6262, it's too much anguish not to share.

    Love Ellie.


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  • Mary C
    replied
    Hi David,
    Does your son have friends that can visit?Does he have any interests?

    sounds like he has a powered chair so maybe he can go out independently locally.

    I have a wheelchair access vehicle and my husband drives it whilst I ride in the back.It allows us to get out to different places.It took a few months to organise via motability scheme.

    Guess he needs if he will agree to a GP assessment to determine if he needs any medication? Or counselling etc.

    MND throws your life upside down as physical abilities deteriorate.Of course it affects your mood and can see how it leads to depression.

    My days are taken up reading, listening to music, TV and seeing family and friends.We go out for walks as fresh air gives me a happy feeling.I look to see what I can do for others in some small way.I have a strong faith and prayer life.I enjoy on line masses and Christian talks.We get out old photos and have a laugh at them.We play a board game called rummikub.I play on line scrabble with a friend who lives abroad.Ok so it’s not wildly exciting but its a way of life I adapted to as I deteriorate health wise.

    Pre MND I worked and had a busy life .Now I have time to read, watch documentaries etc.Of course I have days where I feel a bit flat and wish I could be independent but It is no longer possible.There is a list of what I can’t do because of weak hands and being immobile

    I don’t know your sons personality and interests but it sounds like you are very worried for his state of mind .Can you talk to him about whether he feels he needs help in any way.
    Best wishes
    Mary


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  • David71
    replied
    I started a new post entitled Depression but then realised it made more sense to carry on on here, my beloved son is becoming more and more withdrawn and is now saying that he has no life, nothing to talk about, and it’s heartbreaking, because of mobility issues he is only able to leave the house on rate occasion as transferring is becoming almost impossible for him, we’re sorting out a full mobility vehicle which he can drive his fully electric chair up into which will enable him to get out more but as you all no doubt know this can take forever sometimes and he seems to be just giving up, it’s heartbreaking to see him like this, any one else had to deal with this?

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  • Lynne K
    replied
    I’ve been diagnosed for 4 years next month. Was slightly slurring sometimes but not always 4 years ago. I still have some voice but have to concentrate and with short bursts. I hope that your son can have a Speech Therapist come to assess and advise him. Lynne

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  • Mary C
    replied
    Good luck Shelly..thought a lot about what it will be like when I have no voice.Did you decide for any reason not to you use text to speech app? Any hints welcome .
    Best wishes
    Mary

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  • shelly21
    replied
    Hi David. My speech was the first to show re mnd. That was about 2yrs ago. Its just happening to me re loosing my voice. I've got a text to speech app although I'm going to be using tobii eye tracker. If you want you can look at tobii dynavox. Then try get some funding to help your son.

    Its very very hard but I'm trying to accept that I need a new voice and a new way to communicate.

    Leave a comment:


  • Mmsm
    replied
    Hi lost mine in less 6 months since first symptoms.

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  • matthew55
    replied
    Being mute is not so bad if you can cope with being lonely. 😉😁🤗😍xx

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  • aussiegirl
    replied
    My speech has got worse now for 3 years, but we are all different with different progressions. I am still talking and the Dr. reckons it is clear enough, but it sounds awful to me. I remember reading the singer Linda Ronstadt, who has Parkinsons, reckons she sounds like a frog now when she tries to sings. It's terrible to have to go though it. Best of luck to your son and look after yourself.

    Leave a comment:


  • Gordan1111
    replied
    Hi David - my speech took about 18 months, (including/which 6 months post-diagnosis). As others said it was a drawn-out process, getting gradually weaker voice.

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  • John D
    replied
    I was slurring 6 months or so before diagnosis and then my voice slowly declined over the next 18 months to where I am today with no recognisable voice. With hindsight I can identify various stages when my voice changed although I didn’t fully appreciate it at the time.

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  • matthew55
    replied
    With me it was a year and a half from my voice changing to becoming mute. Once people couldn't understand what I was trying to say to mute about a month. I can't remember when the changeover occured, I think I was in shock. But please remember we are all different. Stay Strong. 😁🤗👍✌️xx

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  • Ellie
    replied
    Originally posted by David71 View Post
    ... can you share with me how quickly those of you that have lost your speech were unable to talk, did it get progressively worse or simply stop in mid sentence?
    How quickly one loses the ability to produce speech which is readily understood by others can vary widely David - mine took less than a year to go from perfect to unitelligible, the worst of it probably took about 8 months.

    It doesn't stop "mid sentence", it progressively gets weaker, loses intonation and becomes harder for the tongue to form words.

    As Mary said, if your son isn't being followed by an SLT, he should be.

    Love Ellie.

    Leave a comment:

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