- Speaking without a Pause -


On the phone, my speech is so "normal" that if the caller doesn't know my situation, they would never suspect I was on a vent or had speech difficulty.  Thank you David Muir.

I use a Passy-Muir speaking valve when I'm both on the vent and for short periods off the vent.  My speech has really evolved.  When I left Shepherd in Atlanta, three months after my accident, I could only tolerate my cuff being deflated for about an hour a day.  As you may or may not know, when the cuff is inflated on the trach (the cuff is a little balloon that can be inflated to seal off the airway around the trach), speech is not possible because no air goes by the vocal folds.  

Upon coming home, however, it wasn't more than a day or two before my cuff came down permanently.  I needed to train my caregivers and lip reading wasn't cutting it.  But, my speech was limited to the one and a half seconds of inspiratory time given with each breath, as we had not yet really discovered the speaking valve.  I wrote a big e-mail about our discovery of the speaking valve and how my speech has evolved to the point that it is at right now, which is pretty darn good.

Below is the e-mail that I wrote to friends & family, upon "discovering" my voice...

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- BILL -

Subj: Cat got your tongue?  Not anymore.
Date: 12/1/98
From: MaxNWM@aol.com (Bill Miller)

Greetings all!

Well, it's about time!  I can't believe it took me this long… 

Just what the heck am I talking about?  Everything, that's what I'm talking about.

Let's rewind father time a little and set the stage before I unveil my latest improvement.  A rather ambiguous beginning, huh?

Well, the first time I saw Christopher Reeve on television, he was speaking very well -- without a pause.  Ok, he was flying all over the world and had a weakness for Lois Lane & kryptonite, too.

The first time -- after my accident -- that I saw Christopher Reeve, when his speech patterns had a newfound significance to me, he was talking real well with just a slight pause.  I was told he cranked up his ventilator without doctor approval and endangered his life.  So, I just filed that away in my mind and didn't think much of it.

As the months rolled by, he kept appearing on talk shows and speaking without the three second pause that's hindered me for so long.  Well, it must not be that dangerous if he keeps doing it, I thought, so I inquired amongst my vent-dependent friends to see if they knew what Reeve was doing.  One guy, TJ Parker, said he doesn't have but a slight pause himself.  I asked what his vent was set on and he said 18 breaths a minute at 1.0 liters of volume.  Very interesting, mine was also at 1.0 liters but only 13 breaths per minute.

Don't ask me why but I came up with the lame excuse that I didn't want to pursue this further because if I eliminated the pause, I'd have less incentive to get off the vent.  Well, recently, after Donna poked holes in my weak theory, I inquired of TJ some more information.

He told me, basically, that it was a Passy-Muir "speaking" valve that enabled him to do so.  Where had I heard that word before?  Rachel, I think you mentioned it -- but my nurse, Supernurse Pandora, I thought she had experience with it as well.  Pandora worked this morning, after I'd learned from TJ the secret yesterday, and she said indeed, she worked with a little girl who had used a Passy-Muir valve.

I then brought back a blast from the past, and mentioned the speaking valve that I used when I first came home from Shepherd.  Dwayne Blocker, the head respiratory guru at Shepherd, had made for me a special valve/contraption to increase the amount of time that I could speak.  With my current vent settings, I get 1.5 seconds of inspiratory time that I can speak, followed by 3 seconds that I cannot speak.  These three seconds are when the ventilator is not giving me a breath and without air passing my vocal chords, not a sound can be uttered.  These same three seconds are a virtual eternity when I make a phone call.  The obligatory "Hello…" is followed by an irritated "Hello!?!?" then "HELLO?# $&@#!" and then… CLICK.

These three seconds rear their ugly heads every one and a half seconds, 24/7 without fail.  Dwayne realized I might benefit from a longer interval with which to talk.  When I was at Shepherd, I struggled to utter three words per breath.  We're talking monosyllabic "See Dick run…" NOT "Visualize Richard proceed."  

With Dwayne's contraption I could get out five or six words, no problem.  However, my head nurse, Big Jim said that the more I spoke without the speaking valve, the more I'd strengthen my lungs.  With ridding the ventilator my goal, the choice was easy.  Put that valve on the shelf and watch it collect dust.

After mentioning it to Pandora this morning, she pulled it out of the Ziploc bag clearly labeled "speaking valve" and examined it.  Supernurse hates dust.  She said this looks a lot like a Passy-Muir valve.  After locating the proper sized connectors, she put it inline on my vent circuit and… 

I guess you know what happens next… low and behold, we've created a monster!  I CAN TALK!  WITHOUT PAUSING!  HIP HIP HOORAY!

Boy, can I fly on my computer!  Breakout the stopwatch and call Guinness… I can play a LIGHTNING round of hearts.  For $76, I tripled the speed of my voice-activated computer.

* * * * *

Gotta hear it to believe it? 

Be my guest, I've recently added an UNEDITED sound clip to my "Life with an SCI" page:)...

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- BILL -


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