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    #16
    David, what can anyone say except life IS SHITE.
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #17
      I’m really struggling with being able to move away from the fact that my son is going to die from this dreadful illness and it’s all I’m able to think about, how can I enjoy (?) the days he has left when all I can think about is that he’s going to die

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        #18
        David you must reminisce with your son about the great times you have had together and find things to laugh about. Undoubtedly you will also cry together, we have all done and do that. It’s a normal part of this horrible illness. Life is fragile and no ones knows when the end is coming. It could be as a baby or many years later.

        You must be strong for your son, even when you may cry together. You have been there throughout his entire life and have raised an amazing man.

        As for you please contact the MNDA who will put you in touch with your local branch and what is called an association visitor. This is someone who has the experience and who you can talk everything through with them. You are not alone, everyone of us with this awful disease have loved ones feeling exactly like you.

        I wish you great strength through this terrible time.

        Richard
        Richard

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          #19
          Hi David,
          is your son getting any support from the hospice or palliative care team in the community.The hospice may be able to offer you some support too?The thought of whats to come can be overwhelming.
          Most of this forum either have MND or are relatives of someone who does and relate to your shock and distress.
          Its anticipatory grief and heart wrenching.
          For me I cope by talking my situation of having MND through and continue to do so with friends and family.I also engage in counselling which has helped me plus spiritual support from my priest.
          Take all the help you can find and it’s a normal response .I am know able to enjoy the memories I continue to make with my family and friends.Your son no doubt is broken hearted you have to go through this distress as he can’t change the situation.
          You may always be distressed but hopefully you can still have positive times with your son .
          Best wishes
          Mary x

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            #20
            Here I am again folks, love to have good news to share but all I’ve got is more questions, my beloved son has been having speech problems for around 10 months now and it’s getting progressively more difficult for him to form words, I know it’s painful folks but please 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? I’m desperately trying to support my son through this awful time but I’m flying completely blind in this, any help will be greatly appreciated
            David

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              #21
              Help!!! How quickly does someone’s ability to talk go? My son is struggling more and more with his speech and it’s so hard to know what to say to him

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                #22
                Hi David,
                may I suggest you and your son seek advise from SALT team if you haven’t already done so.??It’s useful to know in advance what communication aids there are to help if and when speech is no longer possible.

                I still have speech but it’s a lot weaker over last year and more noticeable lately so I have been seeking advise and support from SALT team and learning how to use the text to speech app known as predictable( version 6.Is this something you could do together.?
                Many people on this forum have no longer got ability to speak and am sure they will share how their journey happened and how they coped with various communication aids.

                MND Association have fact sheets on communication too.

                Personally at present I think losing the ability to speak will be my toughest hurdle .It hasn’t happened yet so I can only prepare by practicing the app.
                Its my guess there is no time frame that’s shared by everyone for losing ones voice but I think it goes gradually for some people but for others it comes on as one of the first symptoms of MND.
                I do hope your son is linked to a palliative care team that can offer support to you both.
                Its certainly an emotional roller coaster ride.

                Best wishes to you and your son.
                Mary

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                  #23
                  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.

                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                    #24
                    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
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #25
                      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.
                      Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                        #26
                        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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                          #27
                          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.

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                            #28
                            Being mute is not so bad if you can cope with being lonely. 😉😁🤗😍xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                              #29
                              Hi lost mine in less 6 months since first symptoms.

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                                #30
                                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.
                                Diagnosed May 2021 bulbar onset als.

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