How to speak when you don't have a voice

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dtaai-maai
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How to speak when you don't have a voice

Post by dtaai-maai »

https://www.bbc.co.uk/ideas/videos/how- ... e/p07693kc

I distinctly remember as a teenager working in a Little Chef during the summer hols when a deaf/mute (or hearing and speech impaired...?) group came in. The waitress couldn't cope with it, she simply didn't know how to begin to communicate, so I stepped in. It was great fun for all concerned. We had a good laugh, they enjoyed their meal and went away happy. I've only recently begun to appreciate how they must have felt.

I have been without a voice for a few months now. Hell, I'm without a voice box (larynx) and most of the other functional parts of my throat. It's hugely frustrating, as I'm sure you can imagine. I communicate mostly by mouthing the words I want to say, keeping it as simple as possible. Sometimes, if I'm lucky and if the wind's blowing in the right direction, I can produce a faint sound that is the basis of esophageal speech.

https://en.wikipedia.org/wiki/Esophageal_speech
Esophageal speech, also known as esophageal voice, is an airstream mechanism for speech that involves oscillation of the esophagus. This contrasts with traditional laryngeal speech, which involves oscillation of the vocal folds. In esophageal speech, pressurized air is injected into the upper esophagus and then released in a controlled manner to create the airstream necessary for speech. Esophageal speech is a learned skill that requires speech training and much practice. On average it takes 6 months to a year to learn this form of speech. Because of the high level of difficulty in learning esophageal speech, some patients are unable to master the skill.
The BBC video above is about electronic communication aids - talking computers along the lines of the Stephen Hawking model we're all familiar with, although the technology has moved on a long way in recent years. One development is that you can record your own voice to be used by the computer, but that requires quite a lot of notice before the operation and was therefore an option unavailable to me. I haven't explored this option in any great detail yet as I'm hoping that I won't have to rely on it.

It's just over 3 months since the surgery, and if everything has healed properly, the consultant will insert a voice prosthesis to help me speak, though this doesn't work for everyone.

https://en.wikipedia.org/wiki/Voice_prosthesis
A voice prosthesis (plural prostheses) is an artificial device, usually made of silicone that is used in conjunction with voice therapy to help laryngectomized patients to speak. During a total laryngectomy, the entire voice box (larynx) is removed and the windpipe (trachea) and food pipe (esophagus) are separated from each other. During this operation an opening between the food pipe and the windpipe can be created (primary puncture). This opening can also be created at a later time (secondary puncture). This opening is called a tracheo-esophageal puncture (TE puncture). The voice prosthesis is placed in this opening. Then, it becomes possible to speak by occluding the stoma and blowing the air from the lungs through the inside of the voice prosthesis and through the throat, creating a voice sound, which is called tracheo-esophageal speech.
I am in some ways quite fortunate (relatively speaking of course... :laugh: ) in that I've always had good communication skills, and extensive acting training has probably been very helpful. I can articulate well, albeit silently, and also use facial expression and body language to express myself. I throw a particularly impressive tantrum when really irritated...

This does, of course, require an element of concentration, willingness and intelligence on the part of the "listener", and some people are naturals at this while others are hopeless. Attitude is also relevant. Some people - an unhappy minority I'm delighted to say - can't even bring themselves to look me in the eye. I have a clear scar running from one ear down under my chin and across my throat then up to the other ear - it's not pretty. Nor is the swelling around my jaw line that makes me look like a large hamster; that's caused by lymnphedema, the removal of the lymph nodes in the neck that act as a drain preventing the accumulation of fluid (or something like that...). There's also, of course, a fairly large hole in my neck that is probably quite intimidating!

Many people seem to assume that because I can't speak I must also be hard of hearing and start to speak loud and slowly. Oh joy, I can feel my hackles rising as I type. People who should know better are not immune. District nurses come twice a week to change my dressings (cue district nurse jokes from pharvey, sateeb et al - feel free gents! :thumb: ), and some of them are shouters. I had my annual diabetes eye check yesterday, and the technician suddenly said with a smile "I don't know why I'm shouting, you're not deaf!" - I could have kissed her. Some people assume you are stupid, and I won't tolerate that - out comes the most useful tool provided to me when still in hospital, an LCD writing tablet, which goes everywhere with me. It's surprising how scathing you can be in just a few words! :laugh:

Anyway, just a bit of food for thought. These are all things that I didn't pay much attention to until fairly recently, and I thought some first-hand experiences might be interesting. As always, sympathy not required - not wanted, in fact. I still have quality of life, though I have to say that will be hugely boosted when I can enjoy proper food again!
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Re: How to speak when you don't have a voice

Post by bigston »

Your story takes me back to school days when there was a kid with many issues, one being that he had had an operation and could only speak through if i remember rightly "it was a long time ago " a hole cut in his throat..
pretty much everyone avoided him like the plague
we became really good friends and he more often than not used his issues to inject humour into almost any situation
a lovely soul he was....
I for one wish you well in the days/ years ahead....
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Re: How to speak when you don't have a voice

Post by lindosfan1 »

I had a customer with a whole in his throat with a round piece of metal hoding the whole open. I used to speak quite a bit with him. He held a handkerchief in front of the hole. Understanding him was difficult when I first met him but as we got to know each other it was like a normal conversation, however people who had not heard him before struggled. I requires a lot of patience from bost sides and an awful lot of concentration in the beginning by the listener. We could have some good conversations after a while.
I wish you luck with learning to speak again. Unfortunately some people do shout I not not understand that.
Cheers lindosfan
ps photos of the pretty nurses would be good.
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Re: How to speak when you don't have a voice

Post by dtaai-maai »

lindosfan1 wrote: Sun May 08, 2022 12:48 am ps photos of the pretty nurses would be good.
I'll ask David and James. Nice boys, but a bit shy...
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Re: How to speak when you don't have a voice

Post by dtaai-maai »

bigston wrote: Sat May 07, 2022 6:54 pm Your story takes me back to school days when there was a kid with many issues, one being that he had had an operation and could only speak through if i remember rightly "it was a long time ago " a hole cut in his throat..
pretty much everyone avoided him like the plague
we became really good friends and he more often than not used his issues to inject humour into almost any situation
a lovely soul he was...
Good on you, bigston, because he probably needed friends as much as anything else.

From what you say, I suspect he might have had a tracheostomy, meaning that although he was breathing through his neck*, he still had his larynx. That may also be the case with lindo's customer.

That was my first op in November last year, and I found it quite easy to speak, with tone and expression, by simply placing my finger over the breathing tube so that the expelled air is diverted up and over the vocal chords. Unfortunately, soon after the tracheostomy it became clear that the tumour in my throat had returned with a vengeance (stage 4) and had to be removed sharpish. In fact, it turned out that had it been delayed any longer it might have been too late, so I don't feel too sorry for myself.

*In medical circles I am known by the charming term "neck breather"... :roll: :laugh: . In fact, I wear a red and white wrist band saying in bold capitals "NECK BREATHER RESUSCITATE VIA NECK STOMA" - just in case I collapse in the street and some well-meaning soul tries to give me the kiss of life! :laugh: :laugh:

On the subject of needing friends, I was in hospital for the tracheostomy for a month just before Christmas and for another month in February for the pharyngolaryngectomy. Spending that amount of time in hospital for any reason is not easy, particularly when visiting is either impossible of extremely restricted due to Covid, but the Internet kept me sane, including WhatsApp exchanges with friends, some of whom are forum members. My sincere thanks to all, but particularly pharvey. :thumb:
:cheers: :cheers:
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Re: How to speak when you don't have a voice

Post by Bamboo Grove »

I wear a red and white wrist band
Good to see you in Arsenal colours. :D All the best and wishing you a good recovery.
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Re: How to speak when you don't have a voice

Post by dtaai-maai »

Bamboo Grove wrote: Sun May 08, 2022 1:54 am
I wear a red and white wrist band
Good to see you in Arsenal colours. :D
:shock: :banghead: :cuss: :laugh: :laugh:
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Re: How to speak when you don't have a voice

Post by pharvey »

The frustration(s) with regards to communication has to be an absolute nightmare and certainly something I can't relate to to anywhere near that degree. The benefits (IMO) that you do have is that you do communicate through your skills and the Internet et. al., have kept your (sickening :roll: :wink: ) sense of humour and have not retreated into your shell where many if not most would have done so. Fair play to you :thumb:

With regards to the "Electronic Communication", personally I believe it helps people immensely. I have supported charities involved with Motor neurone disease (MND) for quite some time, and with my love of rugby followed the "Doddie Weir Foundation". I've been lucky enough to meet himself and his great friend Rob Burrow (Rugby League) at a charity event - Rob now relies on "Electronic Communication" as many other sufferers do - it is however an incredible aid and allows him to communicate (along with his own sense of humour)! In your case however, I truly hope this is not something you'll need and hope the "Voice Prosthesis" works for you - you'll have to keep the Forum up to date!

With regards to the "Hard of Hearing" - sorry, but it does make me giggle :wink: With all the travelling that I have done through work, I have met far too many idiots who when don't speak the local language simply raise their voices (considerably) and speak somewhat slower....... Not the same, but it's the mentality DM!!
dtaai-maai wrote: Sat May 07, 2022 4:16 pm District nurses come twice a week to change my dressings (cue district nurse jokes from pharvey, sateeb et al - feel free gents! :thumb: )
Oh, believe me I will and will always do so! :neener:

As for David and James, hmmm - guess you don't want to "talk" about them anyway!! :wink: Don't disappoint lindos though!! :D :wink:

:cheers: :cheers:
"Hope is a good thing, maybe the best of things" - Yma o Hyd.
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Re: How to speak when you don't have a voice

Post by caller »

All the best DM, very brave to relay your story here and I wish you all the very best going forward.
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Re: How to speak when you don't have a voice

Post by pharvey »

dtaai-maai wrote: Sun May 08, 2022 2:12 am
Bamboo Grove wrote: Sun May 08, 2022 1:54 am
I wear a red and white wrist band
Good to see you in Arsenal colours. :D
:shock: :banghead: :cuss: :laugh: :laugh:
And I thought it was a love of Wales and and all things Welsh!! :thumb:
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Re: How to speak when you don't have a voice

Post by STEVE G »

Sorry to hear about your medical challenges DM, I hope everything works out for you going forward.
I can imagine it is frustrating not being able to communicate efficiently. The LCD writing tablet must be a help, an actor I know showed me one of those recently, they use them for script notes.
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Re: How to speak when you don't have a voice

Post by dtaai-maai »

I saw something on breakfast tv the other day about some Radio 1 dj and her stoma. She'd named it - and now I think I should have a name for my neck hole. Suggestions?
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Re: How to speak when you don't have a voice

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dtaai-maai wrote: Tue Jun 07, 2022 11:19 pm I saw something on breakfast tv the other day about some Radio 1 dj and her stoma. She'd named it - and now I think I should have a name for my neck hole. Suggestions?
Well, it can't be a "Bit on the Side"...... I'm sure the suggestions will come though!! :thumb:
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Re: How to speak when you don't have a voice

Post by Dannie Boy »

pharvey wrote: Wed Jun 08, 2022 12:08 am
dtaai-maai wrote: Tue Jun 07, 2022 11:19 pm I saw something on breakfast tv the other day about some Radio 1 dj and her stoma. She'd named it - and now I think I should have a name for my neck hole. Suggestions?
Well, it can't be a "Bit on the Side"...... I'm sure the suggestions will come though!! :thumb:
How about “my little Harvey” :duck:
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Re: How to speak when you don't have a voice

Post by hhinner »

Ted.
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