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    #16
    I'm glad I didn't bank my voice as people always thought that when I spoke I was being arrogant. Oh and that I must have been to public school. Since becoming mute people love my sense of humour, my own brother commented that he had never realised how funny I was! What I find frustrating is the general ignorance of the general public when dealing with a mute. We are not all deaf and stupid as well. 👍😁😘💗xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #17
      Hi John D,
      thanks for reply and you have made me realise that you can still contribute albeit slower than those with speech.It’s good you can meet up with other people who have MND locally.My Local MND co ordinator for the support group showed me how to use chat to engage in the group.
      I still have speech but it’s weaker day by day.I have the predictable App on my iPad and mobile ready for when I need to use it.

      Do you think it’s useful to have a boogie board in addition to unpredictable App.?
      You sound like despite frustrations of no speech you manage to get on with using the technology you have to cope.

      The human mind seems to be able to adapt to whatever life throws at us if we are willing to make the most of life as it is.I really don’t want to sink into a depressive state or cut myself off from my lovely friends and family.I feel it helps them if they can see I am accepting of the changes to the best of my ability without any pretence that it’s not sad to not be able to speak like we usually would.Of course this is my thoughts before I have reached the stage of no speech.

      Many thanks to you John and other forum members who are Kind enough to share strategies to cope when no longer able to talk.

      Best wishes
      Mary



      Comment


        #18
        matthew55 definitely yesterday I went to the hospital for a blood test and take my 10 years old son with me.
        I used the speech assistant AAC app on my phone for talk with the lady there and she took the mask and start answer to my son like if I m deaf 🤦‍♀️ my son Told her that my mom can here and understand what you said. The lady stop, look at my son, after look at me and stay quiet 🙄.
        That was my first weird situation since I m mute. I confess make me realise how bad I look now 😔 make feel like (shi*) I now that people don't know us are innocent on there actions.
        I think I have to get used to more reactions like this in the future. 🤷‍♀️

        ​​

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          #19
          Don't worry it's just one more thing to deal with. I feel sorry for them. 👍😀😚😍xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

          Comment


            #20
            Well done to your son Mmsm
            Originally posted by Mmsm View Post
            I think I have to get used to more reactions like this in the future. ​​
            Please do not accept when people talk to whoever is accompanying you, rather than them speaking directly to you, or if people treat you as if deaf or an imbecile - you are neither. It happens too often 😩😩 My kids and husband always say, "speak directly to Ellie", if anyone asks them a question about me.

            Be firm, be consistent and it will pay off. You're worth it 😘😘



            ​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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              #21
              I've had business cards made that say I'm mute, I'm not deaf and I'm not stupid. 😁🤗💗😀xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #22
                matthew55 how people react to our cards 🤣🤣🤣

                Ellie can't imagine the face people do when your husband and sons says that 😱🤣🤣❤️

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                  #23
                  Originally posted by Mmsm View Post
                  can't imagine the face people do when your husband and sons says that
                  Actually they're mostly apologetic and somewhat embarrassed, then they do engage directly with me. I hope it makes them think twice before doing it to another person in a wheelchair, live and learn 🤞🤞🤞😘
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #24
                    Originally posted by Mary C View Post
                    Do you think it’s useful to have a boogie board in addition to unpredictable App.?
                    Hi Mary. Let me say 1st of all how glad I am that you are in a more positive frame of mind about dealing with the possible loss of your voice.

                    I find my boogie board really useful particularly for short messages. I tend to use Predictable on my iPad rather than on my phone so when I’m out and about I carry the board even though I usually have the iPad with me as well. I guess everyone finds their own preferred way of dealing with the situation.

                    All the very best

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

                    Comment


                      #25
                      My voice is slowly going and I am going to look at voice banking but will miss the spontaneity of conversation. Last Sunday a ‘friend’ had the audacity to repeat her question loudly without giving me time to reply. Fortunately other friends came to my help ‘ she’s not deaf ‘ and I managed to make her understand that my voice may not work well but my brain is as sharp as ever !
                      Think a placard saying ‘ f*ck off imbecile’ would be useful.

                      Comment


                        #26
                        Originally posted by bromleycross View Post
                        Think a placard saying ‘ f*ck off imbecile’ would be useful.
                        I have perfected A Look , known to my family as what your placard would say... 👍😉😘

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

                        Comment


                          #27
                          Originally posted by JWright11 View Post
                          Evening everyone,

                          I’m looking for some help! I’m in my 30s and have been living overseas for the past 18 months. I haven’t been able to come back to the UK until recently because the country I was residing in completely closed it’s borders, due to the pandemic. As soon as I returned, my dad (70s) was diagnosed with MND. His deterioration seems to have happened pretty rapidly. While overseas I had my second child, who is only now just meeting my family and friends, including my dad.
                          I am having a difficult time processing what has happened. My dad has gone from being a healthy, strong man, who was still working as an engineer, to someone who is unable to move unassisted. The whole experience is just complexity shocking to me; I can’t believe what has and is happening. I am in mourning for the grandad that my children have lost. Hopes of sleep overs at their grandparents house, holidays, day trips, fun filled christmases and birthdays have been completely decimated, and now I find my self having to explain to my 3 year old why his grandad can’t play and have fun with him and his little brother. I know that there are many people who have been struck by this horrendous disease a lot earlier than my dad, and I am more than grateful for the time I have had and the time that my children have with him now, but I can’t help feeling that I’ve been robbed of the next 10 years that I’d mapped out in my head. I’m not ready to lose him.
                          I guess I’m just looking for a little advice from others who have found themselves in this position.
                          Thanks,
                          J
                          Hi JWright11 So sorry you are here with us. I’m speaking as a 66 year old grandfather - it’s 10 months since my diagnosis. I feel for your loss, but I would suggest you haven’t quite lost your father yet. If he’s anything like me, he will relish the time he is able to spend with you and his grandchildren. There are so many small, practical things you will be able to do to make his life easier, and you could also simply listen to him and provide comfort and reassurance.

                          It’s amazing how resilient children can be. My grandsons were ages 8 and 4 a year ago they hadn’t got a clue about what MND was. However, it can be explained in simple terms that make sense to them and the MNDA have materials to help with that. In return my grandsons are delightfully thoughtful, caring and understanding of the problems that their Grandpa is facing - and they have wonderful inventive suggestions (usually involving Lego) for making my life easier!

                          I think what I’m trying to say is, when you are able to get through the immediate feelings of loss, you’ll find there are many wonderful family times to enjoy. They’re certainly not as ‘mapped out’, but that’s life I guess. We never know what’s around the corner and we have to work the best we can with what we’ve got.

                          Very best wishes
                          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                          Comment


                            #28
                            Hi j

                            we have been in nearly the same position as you. Living abroad and then my husband was diagnosed with als. Desperate to come home but finding it so difficult to do so.

                            my husband is very happy seeing our children, though they are older than you. I know now he is in good hands and it's up to us to make the most of the time we have together.

                            My husband is 70. Does not want to use a wheelchair and insists he is alright. He goes from not wanting any help and support to practically giving up. It's hard to predict which way it's going from one day to the next. We take each day at a time. Try to do things if he's up to it but realise some days he just wants to chill in front of the tv.

                            just love being with your dad.

                            love and hugs Denise xxx

                            when i can think of something profound i will update this.

                            Comment


                              #29
                              Originally posted by Daught21 View Post

                              Hi JWright11

                              Unfortunately I find myself in the same position as yourself. You're in the right place to get amazing replies from such wonderful people.

                              I am 39 and my Dad is 81. Who has also been a very strong character (nickname - the robot). My Dad was a builder until he retired when he was 68. I myself have seen a rapid decline in my Dad (since being diagnosed in June, with parkinsons also) Realising now that he had symptoms long ago and never told us - thinking he would get better 😪

                              I also believed my Dad would live alot longer (my grandparents were 94 & 96 respectively). I appreciate people are very young when they get this horrendous disease.

                              I've realised that I have anticipatory grief that I need to get help for.

                              I am praying a cure is found ASAP.

                              If you need to chat please reach out - DM me xx

                              Hi

                              If you get any information on anticipatory grief (help or counselling etc)

                              I would be grateful for information. I did phone Cruise many years ago but was told they only help after the person has died.

                              I have mentioned stuff in an email to the MND nurse (when having a bad day), total silence back.

                              Parents diagnosed with dementia and although still with us, the grief as we mourn the life/future we though we would have.
                              Ongoing last 15 years

                              This is being retriggered by my husband's diagnosis of MND at 57, his grandparents lived to their 90s, so anticipated

                              A longer healthier life together
                              Although i had a anticipatory care plan in place for me, if I got dementia first.

                              It involved a lot of red wine and Disney movies. Plus much more lie ins, husband is an early bird still.

                              What you are feeling is totally normal, the feeling of being robbed of a future plus watching a loved one going through such a tough condition.


                              Husband and I hoping he will be an outlier (lasting longer than most).
                              Although he is talking of refusing a PEG, which I will support but wish he would take it.


                              Talking and spending time how they wish, making memories. Even if it is only watching old favourite movies.

                              I would recommend taking some video and voice recordings, pictures etc.


                              Best wishes

                              Donna
                              Donna

                              Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

                              Comment


                                #30
                                Hi Donna, initially I had thought about refusing a PEG until a palliative care nurse listened to my rationale for the decision.I then realised that the PEG might be needed for supplements and medication and that malnutrition isn’t a pleasant thing.I now have a RIG fitted and Although I can still eat I prefer to use the RIG to take supplements via and on some days to get enough fluids to keep hydrated.
                                I also am glad I have completed my Respect form( previously called a DNAR form) as it outlines my wishes for end of life care after discussion with palliative care nurse.
                                Best wishes
                                Mary

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