Silence Speaks

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On the Sat 11 Nov 2017 we did a sponsored silence. The MND Association run a campaign every October called #silenceSpeaks to raise awareness of the fact that over 80% of people living with MND / ALS will lose their speech and have to find alternative means of communication.

We decided to do it as a family so that the boys could experience what we may face later – and we went for 24 hours, starting around 8pm Friday. We named the team after our house; Loud House.

Getting the boys together for a team photo was a challenge…

The rules were you couldn’t speak but had to find alternative ways to communicate. The boys soon found apps on their phones and started pre-programming inappropriate insults to use at the press of a button. We also found loads of Sound Boards – Homer Simpson was my one of choice.  Plenty of “OK”, “Uh-huh”, “Yeah”, “Yeah – probably” – so it sounds like you’re listening.

About 8pm Friday night we started. I was out down the pub… so that was interesting. Noisy environments make it difficult to hear the text to speech on the phone so I tried typing and passing round the phone.

Saturday the house was unusually quiet..

We had some group discussions using our text to speech apps… and it was chaos. By the time you had typed your reply in someone else had asked a different question.. and the phrases that the boys has pre-programmed were all rude and unsuitable .. so lots of laughing had by all.

silenceSpeaks_having_a_chat

We went to the Barns Cafe

silenceSpeaks_having_a_coffeeAgain difficult to hear the phone app, a bit of pointing and nodding and Emma doing some talking for us to decipher what we were after.

Just realised how difficult it was to say “thank you”. In normal life people expect you to talk and reply back to them quite quickly. We must have seemed quite rude.

I guess if you lost your voice people would get to know you and take time. Maybe. Or perhaps you’d be reluctant to go out.

What did we learn at the end of 24 hours of relative quiet?

  1. Talking through Text to Speech apps makes your fingers ache
  2. It is quite difficult to shout up the stairs to get the boys attention.. maybe we need some kind of air horn?
  3. It is very slow to communicate without speech
  4. The final thing we learned was the generosity of friends; in the end Team Loud House raised just over £3,000 ! – Amazing!

The MND Association also said we were one of the highest fundraisers for this year’s #silenceSpeaks.

On a personal note. I’ve recorded my voice using voice banking. I used Model Talker but there are a few around. It’s a clever system where you record 1600 phrases and then a computer uses that to create a model of your speech. You can use that model in Text to Speech software to produce a voice that sounds like you… and it does sound just like me! I was amazed. Obviously you have to record your voice well before the MND has a chance to impact it. So thinking ahead is essential.

Thanks for all your generous sponsorship !

silenceSpeaks_m_smile

7 thoughts on “Silence Speaks

  1. Julia Litt

    I don’t feature in many of the photos because I wouldn’t wear the t shirt. It made me look really fat! I mean even fatter than normal.

    Like

    • You all did an amazing job I have a problem keeping quiet for 5 minutes let alone 24 hours.! You are an incredibly inspiring family supporting each other. I can imagine the urge to laugh out loud at the cheeky texts ( or was laughing aloud – allowed.

      Like

  2. Dave Hunt

    You are a true inspiration my friend. If there is anything I can do or get involved in then count me in. Voice banking – what a great idea!!!

    Like

  3. Angie D

    Well done, thats an amazing amount to raise. My husband,Jon passed away a few weeks ago from MND – understanding him speaking had become a real challenge towards the end – he had an igaze but hated using it as it didnt sound like him- he didnt get round to voice banking in time as after diagnosis he quickly needed ventilation most of the day.. he was quite advanced at diagnosis. So well done for banking – im sure it will be time well spent and make life much easier. Get as much done as you can – while you can – you can always add to the list or redo the bits you really enjoyed.

    Like

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