Phonation valve

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MarieLaure

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Joined
May 16, 2018
Messages
257
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
City
mortcerf
Hi everyone
Has anybody heard of a device called phonation valve ( approximate translation) that is meant to enable people with a trach to speak ? If so, has anyone tried it ? My dad is in the midst of deciding for the trach or not and communication is a major factor. He doesn’t want to use eye gaze.
Thanks for input
 
My husband was trached and vented for 4 years and could speak for the first 3. The first 2+ years he spoke by lowering the trach cuff and switching to a higher volume setting on the vent ( to offset the air loss ). When it became more difficult we added a Passy-Muir speaking valve into the vent circuit and it helped him speak for another 6-9 months . He could no longer talk once his speech muscles stopped working.

I found that most people who had seen/used a speech valve had only seen it used attached directly the the end of the trach tube and while the person was off the vent but it can be put inline with the vent circuit. A PALS on a vent can speak even without a speaking valve until their speech muscles stop working.
 
This all depends on what function he has as far as muscles that allow speaking go. Eye gaze is nothing more than a tool not unlike walking aids. It allows you to communicate, to read books, to look at things on the internet. Add in a google home and you can control your lights, lock the door, control your tv and stereo, turn the heat up/down the list goes on and on. It is nothing to be afraid of. I know a gentleman who just had his first book launched, written entirely with eyegaze.
Vincent
 
Thank you both for your input. I will show your answers. As far as eye gaze is concerned you are preaching a convert. I don’t understand why he doesn’t want it. He tried it once at clinic but it was soon after diagnosis so maybe it was too painful imagining having to use it. I’ll speak to him about it again. For the moment the only part of his body he can control is his head.
Irrationally I share his fear about voice because he has always been an amazing singer.
Maybe I will get in touch with the palliative care people who help us. They might be able to explain better than me
Thanks again
 
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