June 2011

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Mostly Plain Talk News & Events
VoicePoints Frances Stack MA, CCC, Ret. Four Generations Of Laryngectomees Education-Med
Web Whispers Columnist Paul Daniels Football, The Garden & Politics Experience
Between Friends Donna McGary Don’t Get around Much Anymore Commentary
Speaking Out Many Members Primary Speech Option Opinion
The Speechless Poet Len A. Hynds A Trilogy On Aging Poetry
Tidbits Of Interest Brad Russell & Jenny Huffman Free Screening Report News & Events
New Members Listing Welcome News & Events

 

 

 

 

Mostly Plain Talk

 

I've always liked the title of my column. I have used it for many years and it suits me. I like the "News". I read the newspaper daily, or as much as I can find time for...usually over breakfast. It starts my day, sometimes supercharges it as I get steamed over national or local happenings. My TV is almost always on a news channel although not watched as much as I'd like. Some days, I walk through the room, to get another cup of coffee, and make a brief check on happenings in the world. Weather, I check on the computer. I love and hate politics but am addicted.

"Views", mine or others... TV discussions on interesting items have me sitting on the edge of my chair but after a while you could write the script. Letters to the Editor in the paper are always of interest and I have been an occasional contributor.

"Plain Talk" is me. Don't try to figure out what I mean by what I say because I'm not one to cloud the issues. I try to be polite and don't always make it because I am in a hurry.

In trying to figure out the best way to make programs work in WW to get the most benefit for our members, I love to have lots of opinions... It's like working a jigsaw puzzle. This idea will fit well with that possible solution. As WW President, a large part of my time is spent trying to keep expenditures under control and positions filled with willing and capable workers.... all of whom volunteer their time and services.

WebWhispers may appear to be written in stone but it shifts and changes slowly to meet the needs of our members and of the other people, who never join but who come to read our library and newsletters that are on the web. We are open to ideas. We officers also notice and discuss methods that work well or not. So if you have some ideas, we would love to know what they are but remember that we are an online organization with each officer or volunteer working out of their home. There is no "central" office with a water cooler or meeting room.

Looking forward to seeing many of you again at the IAL and to meeting the new members who come this year.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

 

 


Four Generations of Laryngectomees

by Frances Stack, MA, CCC ret. 
Laryngectomee as of 1955  

Imagine, if you will, being a witness to the progress from no speech at all to ES, then AL, then TEP! This is the fourth generation of laryngectomees in my time.

The first generation was no speech at all. Before antibiotics, laryngectomees did not survive, if they did, there were all kinds of weird instruments that people used to try to talk again. I remember when I was about sixteen years old, seeing an old gentleman using a pipe with a vibrator in it Of course, at the time, I never dreamed I would join his world.

The second generation was where I came in. Esophageal speech or no speech! The location of the tumor and skill of the surgeon determined whether the patient would produce esophageal voice. Then who knew how to teach it? There weren’t many professionals who were knowledgeable about it. The artificial voice instruments at that time were cumbersome and sounded awful and both doctors and speech therapists discouraged the use of these instruments. They were convinced that every laryngectomee could develop esophageal voice, regardless of how much effort it took or how it sounded, which was certainly not true! A few, a very few, would be able to produce voice shortly after the surgery but I contend that the location of the tumor and skill of the surgeon were responsible along with the age of the patient.

The third generation, AL or instrument voice. When I was in graduate school in 1975, I was supposed to give a talk to the class about laryngectomees and voice. I brought a Western Electric instrument intending to demonstrate it. When the instructor saw the instrument, she got up and dismissed the class before I had a chance to say a word. Obviously, she was very biased against instruments. I was very angry but I couldn’t challenge her because I could see my degree going out the window if I did. She taught esophageal voice and the people sounded so horrible, gulping, clunking and grimacing that they certainly would have been better off with an instrument! The good ES speakers in my club would also make me angry when they would tell AL speakers to “throw that thing away and do what I’m doing”! They never realized how lucky they were and that the AL method was not a choice but a necessity. I guess some of this still goes on today.

About five years later, I was asked to be on a program for our state group in Champaign, IL, and the biased instructor was going to be there. She retired shortly after I finished Graduate school but I had prepared my lecture with her in mind. I made a video with four instrument users who extolled the virtues of their instruments and how having them changed their recovery period from one of despair to hope for a “normal” life.

I was told she was going to be late and would miss my presentation. I threw a fit and refused to speak until she was there! I had carried this ache in my heart for all this time and wanted to “show” her! When she came in, this little old shriveled up lady held out her arms to me and whispered, “Oh, Frances, how little we knew back then”. The ache disappeared along with any anger and I melted.

Then the fourth generation and the TEP came into being. I remember Eric Blom begging for subjects in Bloomington, where he was a guest of our state group. He needed twenty TEP laryngectomees so he and Mark Singer could present this procedure to the medical community. I sent him one fellow who was a real character but, unfortunately, this man did not do well with the procedure. We must remember that not every one is a candidate.

By this time, I was a guest lecturer at Mayo Clinic and Bob Keith, Clinic Director, let me insert a prosthesis in a patient. This was a first for me and I was excited and elated!

Using lung power instead of esophageal power makes a difference because it is more natural. After all, young kids can “burp” until they grow up and then our society tells us it’s rude. What amazes me is that there are so few ES teachers left. TEP speech, when it works is certainly so much easier.

In reading four years of HeadLines, the concerns and pain haven’t changed. The fears, anger and turmoil are still the same. I read the bound copy that I just received, then read it again. In some instances, it was déjà vu. It made me laugh and cry. Because the elation, happiness, and desire to be a better person doing for others are also still the same.

 

This was written for Headlines 11 years ago.  We are happy to say that Frances Stack is still with us as a WebWhispers member and is still advising laryngectomees.

 

 

 

 

 

Football, The Garden And Politics

by Paul Daniels

 


Well fellow gardeners just when you think my little stories about gardening and life in general in a small southern town couldn’t get any weirder, well think again......:)

Today I had a really nice visit from an old friend and his wife, Joe and Rhonda. We walked around the garden twice if not more, they took a thousand photos if not more, I talked till my batteries gave out, had to swap them out put in new ones and then talked sone more......:) Good Lord the only thing I do more than garden is talk about gardening or visa versa or well you know what I mean if you’ve ever ran across me before.......:)

Anyways we’re walking on this walkway along a side border of my garden. And in the border on the right are a kinda semi-circle of “Black and Blue” salvia Guaranitica.....and they were just starting to bloom, now salvia Guaranitica has a dark luminous blue bloom with black as night calyces ( the bottom of the bloom that encases the base of the petal). And in front of the salvias I had planted bright orange Comos, called “Bright Lights”, now when the Cosmos starts to bloom in late July/August, the “Black and Blue” salvia is really going to be rocking and rolling too, which means they’ll both be blooming “profusely” for all you English majors out there......:)

So after an all too graphic, detailed and over dramatic description of the flower combination in my border, Joe and his wife chime in, “Oh we like blue and orange, we’re Auburn fans”....Now you might think that’s the first time I’ve heard that. YOU WOULD BE WRONG IN THAT ASSUMPTION....:) Not only have it heard it before but on numerous occasions. And I anticipate I’ll hear it more now that Auburn has won the National Championship.....:) But let me get back to my story. What did you say fellow gardeners?...That would be a good idea?....You know fellow gardeners some people are so rude.....:)

Well like I was saying and going to say before I was so rudely interrupted by, well you know who you are.....:) I told Joe and Rhonda that I had written a little story a few years ago about garden colors and football colors of the biggest football college rivalry in the SEC, the NCAA, east of the Mississippi, west of the Mississippi and probably in this world or any other world for that matter....:) Well I never got around to publishing it on the internet but now with Alabama winning the National Championship one year and Auburn the next I reckon its as good a time as any to throw it out here for your enjoyment or NOT.....:)

Well I got some beautiful crimson colored asiatic lilies called “Black Out” and this stand of lilies has grown in the past two years into a clump of lilies about as big as a small Volkswagen and it’s as crimson colored as the Crimson Tide of Alabama.......Now right behind it I got planted some white Shasta daisies called “Becky”, now “Becky” is the kind of Shasta daisy that will stand up to the hot humid weather we got down here in Alabama in June, July, August, September, well let’s face it fellow gardeners, we got some sweltering days coming up for the next few months but again back to my story. And please without any snide comments from, well you know who you are fellow gardener......:)

Now “Becky” will withstand heat, humidity, thunder storms and straight line winds cause its sure nuff got strong roots and it’s got stems with a strong “constitution” like the good old USA, it’ll bend but won’t break, well not yet I reckon but this ain’t a political blog, this is a blog for, well it ain’t political anyways......:) Now what was I talking about? Oh yeah, so I got this combination of flowers in my center border that looks like from afar when it’s all blooming together like the Million Dollar Band of the University of Alabama standing and marching all together in Bryant/Denny Stadium in Tuscaloosa......:) Crimson and White...Roll Tide and well you know what I mean fellow Alabama gardeners and any other gardeners with a radio or TV set that has been working for the last two or three years....

Now last year this other couple who came to visit my garden and me too, I hope....:) They said that those crimson lilies and the Shasta daisies growing together reminded them of the University of Alabama, the Crimson Tide and they bet I planted those because I’m diehard Alabama fan just like them...Well they were so happy with the combination of flowers I didn’t have the heart to tell them I was thinking of many things when I planned that combination of flowers but the Rolling Crimson Tide wasn’t one of them.....:) But now I am an Alabama fan, but when Auburn beat Alabama this year I didn’t jump out the window, I mean I am an adult after all, but I did open the window.....:)

So today when Joe and Rhonda commented on the “Black and Blue” salvia and the orange Cosmos, “Bright Lights” and I kinda felt they assumed I had done it for the old War Eagles of Auburn knowing that they were going to win the National Championship this year and as I had already planted this plant/flower combination two years ago I figured I’d just let them think I was not only an Auburn fan but CLAIRVOYANT TOO.....:)

I tell you fellow gardeners, I’m a football fan and watch Alabama play and when they ain’t playing Alabama I pull for Auburn cause they represent the State of Alabama too.....But I tell the honest to God’s truth, I’ve decided the safest thing to do in my garden anyways, is to NOT mix Alabama / Auburn Football, gardening and politics......:)

Paul From Alabama

Visit my website:

http://web.me.com/sinai/Site/Welcome.html

 

 

 

 

 

 Don’t Get around Much Anymore

 

Missed the Saturday dance
Heard they crowded the floor
Couldn’t bear it without you
Don’t get around much anymore
[music by Duke Ellington; lyrics by Bob Russell]

Well, actually, I didn’t miss the Saturday dance this time. Back in the late sixties and early seventies, the small Maine paper mill town I grew up in had a terrific music program. At least some of the credit for that goes to my father. He was Superintendent of Schools and he hired Don Doane as Music Director. Don is an extraordinary trombonist and musician, who played with Maynard Ferguson, among others, and “retired” to Maine, when he was in his early thirties, to raise his family and continue the Big Band Jazz tradition here. He was instrumental in energizing the Westbrook music program, encouraging everyone to enjoy and participate while nurturing a number of talented new musicians along the way. He suffered a stroke a few years back, but is still able to play, with some accommodations. Our families continue to get together for lunch from time to time.

Last Saturday, one of the beneficiaries of that program organized a reunion dance with some of the original members of local bands that proliferated during that time. They were called, of course, The All-Stars, but it was the names of those old bands that took me back: Untamed Sound, The Talismen, Love, Inc. They were the soundtrack of my agonizingly awkward adolescence. Why on earth would I want to revisit that? Why indeed? I secretly and unrequitedly loved more than one of those boys and I still love that music. Plus the word on the street (FaceBook these days) was that the Talismen could still seriously rock Light My Fire. There were some FB notices about the show that were enticing and I hemmed and hawed about going. I had plenty of excuses, not the least of which was that I hadn’t seen any of these people in 40 years and I was now old, fat and talked funny. Plus I didn’t have anything cool to wear; I would have to drive at night and blah, blah, blah, blah, blah blah.

For reasons quite unknown to me, I decided at the last hour to “girdle up my loins” both literally and figuratively, do something with my hair, strap on some high heels, grab my jean jacket and take the plunge. I was going out! Having made it to the venue without incident, I promptly got lost in the parking garage and couldn’t find an exit to the street. Fortunately I was joined by another Westbrook graduate (before my time but headed to the same show) and we eventually figured it out but not before those really nice high heels had started to talk real nasty to my feet. So I limped into the hotel, now both chastened and apprehensive.

I quickly realized, once I paid my cover and got the requisite hand stamp, that my very attractive silver fox parking garage guide was the exception and not the rule. There were an awful lot of old, overweight folks here ready to dance the night away to Light My Fire. And the music was so loud, no-one could hear you even if you didn’t use a Servox. The first person I recognized was a girlfriend I knew from my church youth group. We chatted a bit and then I wandered over to the bar for a little social lubrication.

And then I saw someone I didn’t quite recognize, but I knew I knew him and he gave me that look as he walked over. When he smiled and said, “It’s Peter”, I jumped for joy. Peter was my very first boyfriend, starting in first grade and we remained best of friends until high school. We drifted apart but he was always in my periphery. We lost touch for many years after that although we reconnected for a while via the internet and I saw him once seven years ago, but then family tragedies and illness separated us again. Peter is brilliant, both intellectually and artistically, but has suffered on and off for years from serious depression. He was always a loyal friend to me but he can seem socially awkward and Westbrook HS was not kind to him. A reunion dance would have been just about the last place on earth I would have expected to find him, even though his older brother is one of the “All- Stars”.

Seeing him and seeing him looking so well was well worth the burgeoning blisters on my heels. We happily wandered around. I talked with his brother who was as astonished as I that Peter and I might meet here, of all places. We even danced to a few songs after I pushed down the backs of my shoes. I didn’t dare to take them off for fear I’d never get them back on again. Most of the folks we finally recognized didn’t seem to blink an eye at my unusual voice. Given the preponderance of no hair, bad hair, pot bellies, big butts and wrinkles, my weird voice was just one more thing.

The boys in the band have aged, too. Some better than others, but I guess I just have to accept that is life. I am really glad I went to the dance. Not just because I met Peter again, which, of course, was truly wonderful, but because I got out and had fun, in spite of myself.

Darling, I guess,

My mind's more at ease
But nevertheless,

Why stir up memories
Been invited on dates,
Might have gone, but what for
Awfully different without you,
Don't get around much anymore

It’s not missing an old lover that keeps me at home, it’s missing the old me. Now that’s just plain silly. That girl is long gone and her lost voice is not the worst of it. My feet are still a mess a week later and a slim waist is but a memory, I fear. However, I had a blast. More than one of my old cronies said I looked great and actually meant it, I think. It felt pretty damn good, all things considered, to be out and about. I think it’s about time I started getting back around….but I am going to have to get some cute sensible shoes!

 

 

 

 

 

 

What is Your Primary Speech Option and Why?

 

Bent Lassen - 1978

During the time for my operation, the option in Denmark was the old fashioned oesophagus voice.  A few years lather the Stafieri fistula was used of a very few danes. The voice prostheses (Blom/Singer) came up in the mid 80s.

My choice was to stick to the "normal" oesophagus voice, which I have used since then. I have a Servox Inton in the draw but I make no use of it.

During the later years I feel that my voice has become weaker, - maybe I will apply to have a voice prosthesis inserted in a near future. ( I will be 70 next January).

 


 

Elizabeth Finchem - 1978

As soon as most laryngectomees see or hear my name they associate it with esophageal speech. The truth is, as an Alaryngeal Speech Instructor that is still listed in the IAL Directory I support all methods of speech following total laryngectomy. It is also true that my personal choice was esophageal speech during my pre op counseling sessions. When I saw and heard two women speaking with feminine voices that were fluent and intelligible I knew "voice" like that was possible, and I was willing to do whatever was necessary to meet this new goal I had set for myself.

Esophageal speech has been my primary speech option since 1981, and remains my preferred method. In closing I also want to make it clear that my speech rehabilitation happened during the period when older IAL members were just learning to accept the fact that we could use an electro larynx and still learn to use esophageal speech. This was and still is a very personal matter of choice, and I chose what served my needs very well at every stage along the way. This doesn't make one method of speech better or worse than another. There are no boobie prizes here. It is a matter of expressing oneself effectively. Now, there's a goal!

 


 

Rita Kinney - 1993

When I had my laryngectomy surgery, I was introduced to the Servox as the first choice for learning to talk again. I also attended many sessions with a speech therapist to learn how to do esophageal speech. I became very proficient in using the Servox, but esophageal speech was very slow. I was so hoping that I could learn it and use it without a problem but it didn't work for me.

I heard about the 3rd choice of the TEP after going to a California conference in 1994, I went to see Dr. Mark Singer and he gave me an insufflation test. It proved that I would be an excellent candidate for this procedure.

After 16 years of using the TEP, it has proven to be the right choice for me. I have made many adjustments as to the type I use because of candida problems. I now use the Advantage Indwelling TEP with the hands free valve.

I am very grateful to Dr. Carla Gress for all the help she gave me the first years of learning to use the TEP.

 


 

Betty Labigang - 1997


When I had my surgery, my doctor told me what they were going to do and that he would be making a puncture wound for a prosthesis. I had faith in my doctor who told me how I would talk but I did not comprehend what it was going to be like without my voice. When they took the "red cath" out and inserted the TEP and I could use my thumb to speak....and I did speak....I was so excited that it was the only way for me. I was good at it. We tried the "hand free" button, which was just too messy for me (looking back, I see that was tried too soon after surgery when I still had lots of mucus.)

The EL, well, I hated the sound of it...so robotic but I was told by a very good source "always have a back up". Today I am very glad I did. A few years back I was bucked off the back of a horse and broke my back and my pelvic bone and dislocated my jaw. I was so glad I had learned the EL.(as a temporarily voice) Then last year, I began having trouble with my TEP not fitting, the sound being more strained and finally went to the doctor. Things looked good except for places he could not get to without surgery but something was not allowing me to speak. I have no insurance. The only way the state would pay was if it was an emergency (which it was not, because I could breathe.) My doctor said he would not charge me but the hospital wanted their money since I would not be getting any help from the state.


So today, with my TEP still in place, changing it regularly, waiting for a change, I am using the EL. I am so happy that I did have another choice of speech.

 


 

Donna Bronkema - 2000

I use a patient changable low pressure valve. My skin will not take the hands free seal. I never really conquered the thing you put up to your neck. I do, after 11 years, find that I can say words and very short sentences with out putting my finger "to the hole". I live 200 miles from my Dr. so being able to change the valve myself is a very big plus. I also travel and feel secure that I can "take care of myself".

I use foam covers over my stoma all the time, night and day. I work as a reference librarian and use the telephone with no problems. I am a "star" with the children and they bring their friends to hear me talk.

 


 

Bob Kanjian - 2002

My speech option is a indwelling tep. Since my surgery was on May 21,2002 at John Hopkins Hospital in Baltimore, Dr. Califano my surgeon stated that I would use a tep. I had so much faith in his wisdom there were no other considerations. June 1, 2002, I was fitted with my first indwelling and never attempted any other option including an EL.

In 2003, I started with a hands free and nothing has changed.

 


 

Dave Ross - 2005

My choice for method of voice was TEP. Following is a brief summary of how and why I made this decision.

I had radiation therapy for stage one laryngeal cancer in 2001 which, according to my radiation oncologist, resulted in removal of the tumor and rendered me “cancer free”. However, in 2004 I lost my normal voice and, as I found out, was caused by the hardening and stiffening of the vocal cords and I was speaking with the same mucosal tissue in my upper esophagus as do we laryngectomees (ES and TEP). Being retired I spent many hours/days investigating the causes and possible treatment for the vocal cord problem and, in this process, I also studied in great detail alternative voices, in the event I was required to have a laryngectomy. As it turned out, my cords would not vibrate because the cancer had returned and was inside the cord. Thus my surgery.

Based on the information I had acquired I choose TEP as my preference (assuming the surgeon found no physiological prohibitive reason) because I desired the easiest, quickest, high volume voice possible. I am fortunate that my preference has worked out quite well for me. I have, and am semi proficient with, an EL which I keep as backup.

 


 

Terence Gaffney - 2006

When I was about to have my lary done I spoke to a friend who was a lary already. He spoke esophageal and sounded very good. I heard ELs and TEPs from other people or on TV , though I never knew how they worked. I joined a support group before I had surgery, in Toms River, NJ as they had an esophageal teaching program. I found out we cannot speak esophageal until the surgery is done. Some had teps before and still had them, Some had an EL that they used. I didn't want to have a hole put in my stoma to insert a tep as I heard of infections and fistulas caused by them. I heard about teps falling into your lungs and that didn't make me to happy either. The expense was another problem getting a tep.


My ENT asked me which way do I want to speak after surgery and I said I will use an EL until I can speak esophageal. The EL was annoying to many people and I couldn't wait to learn esophageal as a primary way of speaking. It was very time consuming and took lots of practice. At first you learn to swallow air and burp making sounds . Then I started to do words and now I do between 7 and 10 words per swallowing each breath of air. I don't even think about swallowing air as it's just habit now.


I have no expense for TEPs and I am hands free at all times when I speak. It takes awhile to learn it and lots of practice but it's worth the hard work in the end. I am a very determined at what I set my mind to and do not give up. I also speak very loud as my friends could understand me better. I feel that I made the right choice.

Whichever way any of us speak at least we can converse with other people after our larys are done. The main thing is that we are alive and able to learn to speak again. Good luck to all and we should be proud of our accomplishments in speaking again.

 


 

Tom Olsavicky - 2008

 

I use a TruTone electro larynx (EL) for my primary voice. Since I didn't have a primary puncture at the time of my surgery in 2008, I had time to consider alternate methods. I will say, I initially thought I would have a puncture done after I had healed from my original operation. I did a lot of research on the different methods of getting a new voice and the advantages/disadvantages of each method.

My local SLP did an insufflation test to see if I would be a good candidate for a TEP and it showed that I was. My wife cried when she first heard the results of that test. I called my daughter on the phone from the SLP office and she too was brought to tears. So I thought this is what I should do for the future, for their sake.

Then I heard a gentleman in my Lost Chord Club (LCC) who spoke very clearly with his TruTone EL. I was drawn between the two methods of speech. I also listened to the many voices on the Internet which provided examples of the various ELs. The TruTone was the one I was most impressed with and decided to try to see if I could get a voice similar to the gentleman in the LCC.

At first it was not very clear mainly because I still had a lot of swelling from the operation. When I was able to use the EL on my neck and eventually found my "sweet spot", I began to sound much like the gentleman at the LCC. I was still thinking that I should have the puncture done at some later date but for now I was satisfied. After 5 months of using the TruTone, I went on a vacation to Hawaii and since I was able to be understood everywhere I went, it is then that I decided to make this my primary means of communication. I didn't have to be concerned about finding an SLP if I needed some help, I didn't need to carry cleaning supplies with me for the care of the prostheses, I wasn't concerned with the unexpected loss of my voice in the middle of a conversation. I wasn't concerned about unexpected leakage or my body trying to reject a foreign object.

All I needed to have was a spare battery in case I talked so much that I depleted the one in my EL. To many this may sound like I was taking the "easy way" to finding my new voice. I viewed it as being sensible about what I wanted for me. I wasn't doing it for any other person or at the recommendation of a doctor or SLP, it was for me. I still pass that philosophy on to the new laryngectomees that I visit.




 

Dr. Bertrand Bell - 2009

 

I have a TransEsophagealProsthesis, aka "TEP", which allows me to be perfectly functional. I work daily taking care of patients but largely teaching medical students and medical residents. This requires a normal or in my case, since I am loquacious, much talk. My wife "cleans" the TEP 2 times/day. I also accumulate mucus and cough it up 3 or 4 times/day. The "TEP" is replaced three or four times/year. I am lucky to have insurance which pays for all of the ATOS supplies. The care that I receive by the ENT department of Montefiore Hospital in the Bronx is absolutely superb.

My approach is to ignore my "artificial voice"!!!

 


 

Angelique Erickson - 2010

 

My primary speech option is the TEP because that is what my surgeon chose for me. I had no say on the matter of getting a ES puncture. I do not like the EL and I have one. I thought I preferred going in silence, (found that wasn't a real good choice for me either.) The note books full of disjointed sentences don't even constitute being called a journal and folks got tired of reading everything I had to say. Would like to learn ES as another form of speaking. That way if for whatever reason the TEP fails, I can carry on without having to go back into silent mode.

 


 

Jim Olcott - 2010

My primary speech option is TEP and secondary EL. I had my laryngectomy in June of last year at UCLA and I live 100 miles north in Bakersfield, Ca. I own a retail business and wanted to be able to communicate as clearly as possible with customers, family and friends.

In the beginning of my recovery, I used an EL and was and am gratetful to have that means of communicating. However, I always knew about TEP speech and was hoping to be a candidate. I heard the examples of TEP speech on Webwhispers and was amazed at the clarity of speech. After completing chemo and radiation, I returned to UCLA for a followup with my surgeon. I received the puncture and was fitted with a prothesis in February, 2011.

I have a Provox NID and am absolutely thrilled with my speech. I do not take it out and if I incur a problem, I will have to go back to UCLA which is where my SLP has his office. I clean it, in place, twice a day, normally after eating. I have had my prothesis for 3 months now and could not be happier with the results. I use it 100% of the time and have my EL for backup.


 

Wayne Hughes - 2010

I have been a Lary since Dec10. On that day I lost a major part on my self, the ability to communicate, share or show my emotions, or even my smallest thought. In my job I have to deal with 25 to 30 employees and the worst is that my job requires me to deal with customer complaints, mostly by phone. I had to write down what I wanted to say and have people pass that along to the customer.

My Doctor did not do the TEP puncture until I was healed and tested ok to use a TEP ,so I started talking with an EL. I found it frustrating to say the least. My favorite drink is a Vanilla Iced Coffee and I could not even go thru the drive thru by myself, not to mention the looks I got from people who looked like deer caught in the headlights. My coworkers would say “yes“, when they did not have any idea of what I said, so they would not upset me. Even my Dad could not understand me, Everywhere I went I had to go with my wife or my best friend so they could tell people what I was saying. Thank God for special people like the two of them.


After I had healed, my SLP ran a test and found I was a good candidate for a TEP. So I made the decision that something had to give and that I had nothing to lose. Then came all the CONS on web whispers. I was ready to back out and just exist. That is when I talked to my SLP, a true 'God sent' Angel named Merle who gave me the inspiration I needed to go ahead with the TEP. I had the puncture on March 9, 2011 and returned a week later to have the TEP put in. They were unable to put it in that week due to swelling and the pain was bad. The only thing I could think of was the cancer was back and had to be causing the problem. I was scared to death. Again Merle stepped in and convinced me that it was swelling and that it would go away by the following week. When I returned the following week I got my TEP.

The first words out of my mouth were the last words before I went into the operating room and that was “ I Love You” to my wife. My wife cried, I cried, Merle cried. What a great day! After everyone left the room I had to check out my singing voice as I have never been able to sing. I was certain that if God could let me talk he surely would give me a good singing voice. So I sang the first thing that I could remember, “1234 What Are We Fighting For” by Arlo Guthrie. My wife cried then looked at me and said,”Don’t worry they just haven’t written the right song for you yet.” and we laughed.


Since that time I have been able to talk to all my coworkers and they are able to understand me. I can handle customer problems even on the phone. I am very happy with the method I have chosen to speak. Life is normal again, Life is good. Thank God for my wife, my friend Jeff , who spoke for me when I could not, for Merle, who has truly been a God send, and all my friends that stood by me.


Suggestions for new questions?  Please send to Speakingout@webwhispers.org
 

 

 

 


 

A Trilogy of Poems on Aging


I have decided that I have at last become the third wise monkey. It started with my eyes and having to wear glasses, ( See no evil), then with my speech when I lost my vocal cords, ( Speak no evil), and now with my hearing in having to wear a hearing aid, ( Hear no evil).


And all this in one so young, which is so terribly unfair when you reach the eighties, plus a little bit. So poems are in order to mark this momentous event.


My Eyes

 

My eyes are the windows on my world,
they've seen so many things,
of fear and hatred, tyrants foiled,
and the joy that true love brings.

But slowly as the years progress,
those pictures slowly fade,
and glasses worn with great duress,
get thicker with each grade.

It's so unfair in one so young,
when a beautiful face is blurred,
and praises have to be unsung,
in case displeasure is incurred.

There's not much now, original,
with bits replaced with sighs,
and plaintively, I often call,
for those old blue twinkling eyes.



The Miracle Touch

 

I would have to listen forever,
or so it would sadly seem.
My poor tongue could be of leather,
and to join in just a dream.

First head to left and then to right,
speechless, a ' Trappist Monk,'
being ignored is a terrible plight,
your spirits are quickly sunk.

Then the surgeon’s hands they touched me.
A miracle he performed.
Not only did my spirit fly free,
but words, my silent lips formed.

Not only a life he he gave me,
but of a quality oh so rare.
The joy of contact with others,
and poor poetry to share.



The Oldish Man's Complaint

 

Ah! Pity love where-ever it grows,
see how in me it overflows,
though baggy-eyed and bulbous nose.

So strange a thing is seldom seen,
my age is dull, my sight not keen,
above I'm grey, but elsewhere green.


The poet who never grew up.
 

 

 

 

 

May 13, 2011 Free Screening

Head and Neck Cancer Alliance (HNCA),

Shands Jacksonville Medical Center and
University of Florida Health Science Center in Jacksonville, Fl

 

Hi Larys and friends,

We are proud of our our participation in the free screening during Oral, Head & Neck Cancer Awareness Week held at The UF & Shands Hospital in Jacksonville, FL. This was one of 200 held across the country!


Here are a few pictures of Brad Russell and yours truly with Dr. Naseri who is a Board Member of HNCA and a Shands Head and Neck Surgery Doctor. Missing from the pictures is Wayne Pullum. For more information, go to the website: www.headandneck.org

 

 

The screening was very successful with at least fifty people showing up. It ran smoothly thanks to the efforts of Dagnye Dore, Jennifer Hamilton and the Shands Staff. We manned an information table and were able to distribute Dave White’s CD version of “The Laryngectomee’s Guide.” We all join Dr. Naseri in his goal of a screening at the Daytona Raceway!

Brad Russell and Ginny Huffman
 

 

 

Welcome To Our New Members:

 

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 36 new members who joined us during May 2011:

 

Joseph Barron
Granite City, IL
Bobby Boyd
Ruther Glen, VA
Nancy Boyd - (Caregiver)
Ruther Glen, VA
     
Susan Bruemmer - (SLP)
Richland, WA
Tom Croal
Seal Beach, CA
James Dauwalder
Phoenix, AZ
     
Courtney DiBlasi - (Caregiver)
Philadelphia, PA
Nicholas DiBlasi
Philadelphia, PA
Anna Eaton - (SLP)
Chicago, IL
     
Robert Elam
Manchester, TN
Una Moran Erlandson
Pickens, SC
Conor Fearon
Dublin, Ireland
     
Stacy Firely - (SLP)
Allentown, PA
M. Lynn Foti
Akron, OH
Austin George
Dallas, TX
     
Chester Gibson
Carroliton, GA
Earl Jackson
Little Rock, AR
Nicole Kamekona - (MED)
Honolulu, HI
     
David Keller
Greenville, TX
Luci Knotts - (SLP)
Moss Point, MS
Mario Landera - (SLP)
Miami, FL
     
Barbara Littiken
Lake Barrington, IL
Larry Moody
Taylors, SC
Charles Nick Nicholson
Alfred, FL
     
Lori Pence - (Caregiver)
Dallas, TX
Alfred Pino
Moreno Valley, CA
Emily Poole - (SLP)
Chicago, IL
     
Silvana Portelli - (Medical)
Mosta, Malta
Karl Rinehart
Ames, IA
Brad Russell
Jacksonville, FL
     
Mike Smith
Seattle, WA
Bob Sughrue
Corapolis, PA
Jeanne Ulrichs - (SLP)
Dubuque, IA
     
Brandon Viet - (SLP)
Iowa City, IA
Sarah Whitehouse - (SLP)
Houston, TX
Thomas Zimniewicz
The Villages, FL

 

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
           Webmaster - Len Librizzi
 

 

 

Disclaimer:
 
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
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