I know the progression of MND is different for every body who suffers from it. Hubby`s first signs were the limp, and his walking is slowly deteriorating, he can`t stand up for too long either without support, hence the showering problem, but the most obvious progression has been his voice. It is most apt I guess that one of the MNDa`s June awareness slogans was `Don`t let me die without a voice`. I already do the business phone calls for him as for some reason his voice is worse on the phone and he is scared people will think he is drunk. I said say you have MND, but then the person on the end will ask what it is, so it is just easier if I do it.
We have a laugh and a giggle sometimes at Chris slurring his words, not to be cruel, but to try and make light of it. Sometimes he just can`t get the words out. He`s not a big talker and yesterday showed how tiring it can be for the voice when he does talk for a long time. Our youngest daughter even joked how sometimes he sounds like a Dalek, which is a bit weird, but true and I noticed his singing voice has weakened and gone up in pitch.
What a complicated thing the voice is , something we take so much for granted, so many muscles used in it`s creation. More importantly it is how we express our self in the most basic way, the first tool we ever used as a baby to get our message across. I know we`ve all had someone in our life that we wish could lose their voice for just a while, because they are boring us to death or driving us round the twist, but imagine the actual reality of never being able to talk again ? I think that is pretty scary. OK, so the speech therapist down here said Chris will have access to the top of the range IT communication tools, but it must be like living permanently in the virtual world. You can type out words, you can get a computer to talk for you , you can print emoticons, bloody hell these days people can even work a computer with their eyes, but it can`t express for you, it can`t bare it`s soul for you. I`m dreading the day when Chris loses his voice for ever. Please MND, don`t take Chris`s voice too soon and I know there will be much worse to come after that, but for now, let him live with his voice.
