May 2011

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Something New News & Events
VoicePoints Glenn E. Peters, M.D. Ask The Doc? Education-Med
Between Friends Donna McGary The Seven Ages Of Man Commentary
Speaking Out Many Members Stories From IAL Meetings Opinion
P.S. Dave Ross Being The Best You Can Commentary
The Speechless Poet Len A. Hynds Brave Frigate Gloworm Poetry
Editor's Mailbox Angelique Erickson Raised On A Farm Experiences
New Members Listing Welcome News & Events

 

 

 

 

Something New!

 

Recently, we put a selection of opinions, copied from a WebWhispers Journal from 10 years ago, in the WebWhispers email list. That posting received wonderful response. As a result of those comments, we are excited to have a new column, "Speaking Out" in Whispers on the Web and were lucky enough to get Jack Henslee to agree to coordinate for us.

Jack is a long time laryngectomee and extremely knowledgeable not only about health issues but about equipment, suppliers, clubs, state organizations, the IAL, and he has been a member of WebWhispers since the first year when it was called Dutch's group. Jack is traveling and working with laryngectomee organizations in other countries as well as constantly helping out here in the U.S. He has always been a hard worker and we are grateful that he is willing to share his knowledge and contacts with us.

There will be new subjects every month but when you hear from Jack asking for your opinion on a particular subject, please give him an answer. I certainly will and many of you are not reticent about sharing so we should have some good and interesting columns. This month we have an unusually large number of long term members writing in and we wanted to introduce you to some of the varied experiences but I particularly appreciate one of our newer members responding with his thoughts.

All in all, with no one knowing what the others had written, most of us responded telling about our first IAL Meeting. If you have not been to one, you have missed the opportunity to learn, share, meet laryngectomees, caregivers, vendors and lots of medical personnel... to hear them speak and to watch them talk, how they do it and what they use for speech.

Please read our new column. It is rather long but very interesting.

For information about the next IAL to be held Mid-June this year, please check:

http://webwhispers.org/about/currentnotices.asp

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

Coordinated by Meaghan Kane Benjamin, M.A., CCC-SLP

 

                                         meaghan.benjamin@mac.com  

                 

 


Ask the Doc?

 

Dr. Glenn E. Peters, head of the Otolaryngology Surgery Department at University of Alabama in Birmingham (UAB) answered questions for us for a number of years in HeadLines newsletter. These were taken from 1997 and explain so clearly that everyone can understand the answers. We thought you might like them. (Pat Sanders)

 

Hey Doc, ever since my laryngectomy I seem to have trouble with constipation every once in a while and I really haven’t changed my diet. Why is that?

Answer: In order to have a natural bowel movement you need to strain a little. Normally straining is done by closing the vocal cords and increasing the pressure in your chest by exhaling against the closed vocal cords. The same thing happens when you strain to lift a heavy object. Without a larynx you can’t strain normally because your stoma will not allow you to restrict the outflow of air from your lungs. The solution then is to eat a diet which will provide a large amount of bulk to your stool as in a diet high in fiber …your basic old healthy fruits and vegetable diet along with grain products that don’t have all the “good” refined out of them. You also want to stay very well hydrated with plenty of water, juices and liquids.

Glenn E. Peters, M.D.

Ever since my laryngectomy food just doesn’t taste the same. You didn’t operate on my tongue (Did you?) so why is it that I don’t taste as well as I did before surgery?

Taste is a complex special sense. What we know as “taste”, particularly the more delicate tastes, is really smell. The subtle tastes of eggs, certain cheeses, fruits, wines and the like depend on an intact sense of smell for their discrimination. Smell relies on our ability to move air containing certain molecules into the highest recesses of our noses. When we eat, the air with the odor bearing molecules goes behind the palate up into the nose. Following your laryngectomy, you no longer breathe through your nose but through your stoma. This results in less air reaching the smell part of your nose. The bottom line to all of this is that with a decreased sense of smell, it naturally follows that your sense of taste will be less as well.

Some patients learn how to “sniff” a little air up into the nose to enhance their sense of smell. Another tip is to add a little extra spice or cook with pungent herbs to help the job that your tongue is doing for you. This may make your food a little more enjoyable. Bon Apetit.

Glenn E. Peters, M.D.

By far and away, the question that I am most frequently asked is “Doc, did you get it all?”

I thought I might just explain this concept and let everyone know that the “get it all” really doesn’t apply to cancer , i.e. malignancies. Let’s start by reviewing just what a cancer is in the first place. A cancer is a lesion that has the capacity to act in a lethal fashion and ultimately result in the death of the patient. Cancers come about when a group of cells, for whatever reason, looses their normal control mechanisms and begin to grow out of control. As a result of this growth and loss of regulation some groups of these cells take on new genetic characteristics and become further programmed to carry out certain specialized functions. One of the most important new functions is the ability to invade the surrounding lymphatics and blood vessels and ultimately spread to other parts of the body. Therefore, cancers are programmed to spread.

The ability of a cancer to metastasize or spread to other organs can occur at any time during a lesion’s development and growth. We usually see this happen with larger tumors, but even the smallest and earliest cancers possess this genetically programmed ability to metastasize.

Surgery and radiation therapy are designed to take care of the tumor that exists locally in the head and neck area. Unfortunately, at this time, there does not exist any form of therapy that can address cells that might get out and set up shop at other sites. The best we can hope for is early detection of any new sites of possible spread. That is why a program of close and careful follow up and surveillance is so important.

So, in summary, we hope to eradicate tumors in the head and neck area with surgery and radiation. Most times we can get everything, that we can see and feel, out.- But does that mean that we “got it all”? Most times it does indeed mean just that—but remember that we are dealing with a disease that by its very nature is designed to spread. So adopt a healthy life style and keep those follow up appointments.

Glenn E. Peters, MD

Doc, a lady laryngectomee wrote in to our Internet group and asked what harm there was in having several glasses of wine every evening. How about it? Can we continue to have a cocktail?

It is well established throughout the literature written about head and neck cancer that tobacco and alcohol are both the most common risk factors associated with the development of the disease. Usually, we see both factors acting together to cause the problem; however, tobacco alone or alcohol alone have been clearly identified as independent risk factors, each capable of causing cancer.

Now here is where the water gets a little muddy. New research has been looking at the role of certain chemical compounds called anti-oxidants particularly in their roles of not only preventing the development of cancer but also slowing down the development of atherosclerosis. One of the sources of these anti-oxidants is RED WINE. Distilled spirits, beer, and white wine do not contain the anti-oxidant compounds. Several studies have actually shown some health benefits from one or two glasses of red wine several times a week. By the way, broccoli and cauliflower also contain even higher levels.

So what’s a girl to do? Generally, folks who get into trouble (ie cancer) from alcohol and tobacco are not just users but ABUSERS of the stuff. Around the time patients are treated for their cancers they usually quit smoking and drinking, using this time in their lives as the best possible excuse to quit. A lot of these patients have self-control problems and cannot do anything in moderation. That’s why we as clinicians discourage even modest use of alcohol because we worry that it will only lead the patients back to their old ways.

So the answer to this question lies within each of us as individuals. Can we each be careful and responsible enough to limit intake while still taking advantage of the possible health benefits an occasional glass of red wine has to offer? If the answer is “no” then don’t start even with a sip because it will only lead to trouble again.

Glenn E. Peters M.D.

 

 

 

 

 

 

 

Once Upon A Time

 

Once upon a time there was a little girl who thought it would be wonderful if she could grow up and marry a Prince. She would become a Princess and have lovely dresses and magnificent horses, live in a beautiful castle and everyone would think she was very special indeed. Alas, the little girl was born a common American and her well-educated and forward thinking American mother let her know, in no uncertain terms, that being a Princess was more a burden than a privilege. “How would you like it if everything you ever did was watched, photographed and criticized?” The little girl, who rather liked being the center of attention, really didn’t see the problem. However, she was disappointed when she first saw pictures in a magazine of Princess Anne and the Royal Family. The little girl was astonished at how ordinary they all looked. Princess Anne really wasn’t very pretty and the Prince was quite homely. It was disillusioning, to say the least.


Now, Barbara Henckle was how a Princess should look. On the first day of sixth grade a new student joined the little girl’s class made up of the kids from a small paper mill town. Barbara was very tall, with extraordinary white blond hair, wore a pretty dress that had a sash at the waist (which the little girl coveted) and held herself with remarkable dignity.


I am still in awe, nearly 50 years later, of her poise that morning as the “new kid in town”. Barbara turned out to be a modest and thoughtful girl and was remarkably centered and mature even as a teenager. She would probably be embarrassed by my memory, but we were all stunned by her presence at the time.


Obviously I have been watching BBC America and all the coverage of William and Kate. Perhaps, fairy tales do come true. Except -zip zip zip- what is the sound of a tape as it rewinds? Now, don’t get me wrong, I love fairy tales. I collect books of them, including some from my childhood, but I have to say, most of them are dark, violent, cautionary tales whose “Happily Ever After”s are extraordinarily hard won and not without great loss. Disney’s Cinderella they are not.


One of my favorite fairy tales from a treasured childhood book was called the “The Wild Swans” by Hans Christian Anderson. The illustrations are so exquisite they made me cry as a child. The story is wrenching. It is not a fairy tale you want to live, but it is powerfully beautiful.

You can save your brothers, said the woman.
Have you courage and patience?
If you do try to save them, no one will understand you.
You’ll be tired, alone and afraid.
Here’s what must be done.
Near this grotto grow many nettles.
They burn and sting like fire if you touch them.
You must pick every last one.
…Knit eleven coats…
The moment you put the coats on your brothers they will be free from their spell.
The hardest part is this: from start to finish you must work without speaking.
If you say one word…your brothers will die.

In the end Lisa does save her brothers from their enchantment and marries the King but only after enduring years of hardship and isolation; barely escaping being burned at the stake as a witch.


As I watched the royal wedding with all the trappings befitting a future king and his beautiful bride, along with millions of others worldwide, I was transported by the pageantry to a place where beauty, order and harmony ruled. A place far from political uprisings, wars, poverty and ignorance. A peaceable kingdom, untouched by tsunamis and tornadoes, despots or danger. It was magical…like the ending of fairy tale. Which is, of course, what we are thinking about when we say something is like a fairy tale. Funny how when someone is at their darkest hour, struggling against terrific odds, we never say, her life is like a fairy tale. However, most of them are more about adversity and the courage to overcome unimaginable obstacles than they are about a final triumph.


Undoubtedly Prince William has already known great tragedy and as a couple he and Kate will certainly face difficulties and heartache. Soon enough we will all be wrenched back to reality; a place of wars, chaos and uncertainty, a place where knowing what’s right and wrong is increasingly complicated and justice all too often inadequately served.
But for a little while, they and we can set all that aside and indulge our fantasies of a magical kingdom where evil is always satisfyingly punished, good rewarded magnificently and it is perfectly clear which is which.


The king picked the star-white rose and put it in Lisa’s hands.
She opened her eyes, and joy filled her heart.
All the bells in all the churches in the land rang out of their own accord.
Flocks of singing birds winged in on every side.
No king ever had so splendid a celebration
As nature made for Lisa and her lord that day.

 

 

 

 

 

How Many IAL Meetings Have You Attended - What is Your Favorite Memory?

 
Jack Henslee - 1988

 

For many people the first IAL event they ever attended was and always will be their favorite. After all, if it didn't make an impression on you then, you probably wouldn't have gone back for more. I hope that the accounts you read below will encourage you to also attend one day.

I have now attended 16 Voice Institutes/ Annual Meetings so it's probably obvious that my first meeting in Winnipeg was my favorite. That was way back in 1991 and today I still see some of the people I met back then at today's IAL meetings. Laurie Gallant from Toronto, Jessie Hart and Susan Reeves from TX, are a few that come to mind, plus there are so many that have since passed but returned every year for many years.

I first attended as a Laryngectomee Trainee at the Voice institute. Things were a lot different then and the Voice Institute (VI) and Annual Meeting (AM) were 2 separate functions. Back then the VI started on Sun and ended on Thurs when the AM started. The hours were long! We started at 8:00 AM each day and sometimes didn't finish until 9:00 PM. Lisa Proper was my "team leader" and she worked our butts off but she also got great results. One of the best things, most of us took away from those experiences, was not only being educated and improving our speech, but leaving with a determination to help others in the future. The Voice Institute was and still is staffed with great volunteers that give their time to make our lives better and it sure feels good to pass that on to others.

 



Wayne Baker - 1991

 

In 1993, the laryngectomee world was different. There were clubs everywhere and meetings were well attended. American Cancer Society ran the IAL meetings and esophageal speech was considered the gold standard, representing the epitome of laryngectomee rehabilitation.. Most local laryngectomee groups revolved their meetings around esophageal speech and in many places those who were not able to achieve good esophageal speech were looked down upon by those who had acquired it. This attitude had been changing since the introduction of the TEP, but esophageal speech was still king, In 1993 a landmark for that change occurred at the Rochester, MN Voice Institute with the May Clinic.

A wealthy laryngectomee from New York had made a large enough donation to the event that he was given the privilege of speaking at the Voice Institute Banquet. He related his practice of demanding that non-esophageal speakers should throw their Artificial Larynxes away and rely only on esophageal speech. I don't remember what he said about TEP users, but I suspect that he thought they were cheating, He ended his speech to stunned silence.

The faculty of eminent Speech Pathologists and MD's met in emergency session and announced the next day that the best method of alaryngeal speech was the one that worked best for the individual. I have attended a total of 15 meetings and I imagine there is still some arrogance among some old timer esophageal speakers, but they are definitely in a minority now and the laryngectomee world is better for it.

 


Richard Crum - 1988

 

I have been to every IAL meeting except one since 1990. I missed the New Orleans meeting in 1992.

The one that stands out in my mind more that most was the meeting in Cherry Hill NJ in 1994. I arrived at the Philadelphia, PA airport late, about 11 pm. I had reserved a car because I wanted to go to Gettysburg the next day. The only car they had left was a big black Cadillac and they let me have it for the same price as the compact that I had reserved. After renting the car it was about 1 am and on the way I missed a turn and ended up in downtown Camden NJ. A white guy in a black Cadillac in downtown Camden at 2 am in the morning. Not a pretty sight. With the help of two NJ police I finally made it to the hotel.

The hotel had just filed bankruptcy. Water leaking from the ceiling of the bathroom. This was the last IAL that lasted 2 weeks. One week for the Voice Institute and one week for the IAL meeting. The first week we shared the hotel with a group of gospel singers. The hats were memorable.

I attended the VI as a student and I had an instructor from Greece. The second week, we were joined by a group of 70 laryngectomees and spouses from Japan. All of the laryngectomees in this group were esophageal speakers. The meeting was very interesting and turned out to be very eventful.

 


 

Bob Herbst - 1998

 

I have been to eight of the last ten AM/VI's. Nashville in 2000 was my first experience being with over one hundred laryngectomees in the same building. My eyes and ears were opened in amazement. I had spoken to Pat Sanders, Dutch Helms, Herb Simon, Elizabeth Finchem, Jim Lauder and many others via WW but never got to put a face and voice together with my new web friends. I brought my wife Lesley and the president of the New Haven CT Lost Cord Club, Burt Haberfeld, and his wife with me. Burt introduced me to one of his favorite SLPs, a woman by the name of Susan Reeves.

About 7 or 8 years later, I was reintroduced to Susan, who is currently our IAL Executive Director. Shortly after Atlanta's AM/VI Burt's cancer came roaring back, and I was chosen to be New Haven's next LCC President. As years went by, I attended Myrtle Beach, Atlanta, Boston, Burlington, Little Rock, San Mateo and Louisville/Clarksville and now am looking forward to seeing old friends and newbies in Kansas City.


My favorite memories probably revolve around the pools. Getting back in the water was a highlight every year. The usual suspects included Pat S, Elizabeth F, Tony Talmich and others.

I believe it was in San Mateo where Terrie Lynn Hall and Tom Herring were coaxed into joining us at the pool where my favorite memory may have taken place. There were about ten or so larries in the pool and Terrie gingerly got in the water and, after occluding her stoma, went under like a fish and came up so proud of her self that she cried right there. That moment alone was worth the trip.

Every year there are special unforgettable moments and people to meet. Meeting other laryngectomees, their spouses, the SLPs, and our vendors face to face is something I highly recommend to every one of us.

 


 

Barbara Nitschneider - 1974

 

I had my laryngectomy at the age of 27. I learned of the upcoming meeting in Chicago in 1976. It was an eye-opening experience and  I have been attending IAL Annual Meetings since then.


It's very difficult to pick any single event or meeting as all were special in their own ways. Some were more difficult than others, but all have shaped who I am today. Having to choose, I would pick the meeting held in Chicago in 1976. I had been a laryngectomee for over a year and had developed a fairly good esophageal speech. I had been able to return to teaching second grade. I was beginning to accept that I would have to spend the rest of my life as a laryngectomee.


I also signed up to attend the Voice Institute which was held on a college campus at that time. It was there that I met all the people whose names I would hear over and over again in the coming years: Colonel Lauder, Jim Shanks, Joe Quigley, and Eric Blom. In fact he was just an SLP at the time and was attending the VI as a student. I learned so much and met so many wonderful people. I met people with similar stories to mine and others with different stories. All of us were special in our own ways. It was the first time since my surgery where I was not in the minority, but was with the majority. I met lifelong friends at the Voice Institute, most of them SLP's.


I was only 27 at the time, which was young in the world of laryngectomees.I also had a good ES voice. I received a lot of attention and that felt good. It had been a long time coming. I'm sure I was not the only one there who had those same feelings. That's the magic of the AM's. I know it was magical for me and would be for a long, long time.


I have only missed one AM since 1976 and that was last year, 2010. I had some significant health problems that kept me away. I do plan to be there this year in Kansas City. I know it will be special, and I know it will be different, as each AM has been. It's the one time of the year where I truly look forward to seeing all the wonderful friends I have met over the years.

 


 

Tom Olsavicky - 2008
Lary from VA

 

I have been to the last three conferences and plan to be in KC this year.

I was operated on in April 2008 and the Tidewater Lost Chord Club encouraged me to attend the conference in Little Rock, Ark. that same year. I was amazed that within 5 minutes of personal instruction at the Voice Institute, Dr. Doyle had me saying "cupcake" by using esophageal speech. Up to that time, I had been unable to make a sound on my own.

Also at Clarksville, Ind. I was moved by a young SLP Trainee who was in a wheel chair because of a birth defect but she was working on improving her/our lives. She even got on the dance floor in her wheel chair and had a wonderful time. She was such an inspiration to us all. She had many more challenges in her life than those of us who had lost our voice.

It made me realize that how we accept our life changing events, is what enables us to enjoy the things that we can do and not to dwell on the things that we can't.

Finally, it is always great to be around people who look and sound similar to us.

 


 

Michael Csapo - 2000

 

I have been quite blessed with the opportunity and ability to have been able to attend three IAL meetings over the years since embarking on my journey through life as a laryngectomee. In 2004, I attended my first convention in Anaheim, California as a Voice Institute Pupil. Amidst the confusion of running around from one lecture or meeting to another, there were a few brief interludes which allowed for some free time for leisure and socialization. For myself there would have been even more time to socialize had I not been rather consistently prone to losing myself in the confusing corridors, wings and long hallways of the Sheraton Hotel.

It was during one of the brief earlier morning "Break" periods where I exited from a lecture and I caught a whiff of fresh coffee being brewed down the hall somewhere. I shifted into high gear as I chased the aroma down to the Vendor Display room where I grabbed myself a cup of this precious brew. I still had about half hour to consume before I had to return to my room for a "Hands On" session so I casually strolled by the various exhibits and displays. It was during this stroll that I had the very fortunate opportunity to personally introduce myself and shake hands with "Dutch" who many of us know as the founder of WebWhispers. Dutch did not immediately recognize who I was when I offered my name however when I blurted out "AKA Crazy Donkey" I was instantly greeted with the most friendliest of smiles.

There have been so many memorable and cherished moments which have evolved from my attendance at IAL meetings which I have had the privilege to attend. Personally meeting Dutch ranks very high on that list as I am still very inspired by Dutch to this day. The first IAL which I attended was also a huge development in my healing process as I discovered first hand that there were hundreds of others physically in attendance who have faced and overcome the very exact same challenges which I was struggling with. In fact I soon learned that there were others worse off than myself and I learned to have a better appreciation for my own circumstances. I would urge anyone who has the opportunity to attend an IAL meeting to do so, you will not regret it and you will in fact be enriched and rewarded with knowledge, friendship and proof there is life after laryngectomy.

 


 

Elizabeth Finchem - 1978

 

My first IAL Annual Meeting was in 1981 and my first IAL Voice Institute was in 1982. (Before I found the IAL I worked on my own rehab at Mayo Clinic's week long Rehab Seminar every June 1979-1983. ) Counting my first IAL, I have attended 25 of them.

My very first one was held in Philadelphia, PA. It was far more than just the help, I hoped to get, in planning future meetings and programs for my local club. I rode to the meeting with a couple from my local club so we would have two Delegates there for the Business Meeting. It was a real eye opener for me as I listened to how well so many presenters spoke with electro larynx and esophageal speech. I was good, but they were better. (TEP was still quite new then.) I also learned about the structure of the IAL organization and what the Voice Institute offered while I attended the AM Speech Improvement classes. It was there that I met a young speech pathologist from Israel, Frieda Friedman, who taught me how to make H sounds by trying to repeat some of the gutteral sounds from Hebrew and German languages. It worked for me. I met so many IAL leaders that became close friends of mine over the years as we served together on the BOD and Standing Committees. I miss those we've lost over the years, and value what they did to keep the IAL functioning for the newest laryngectomees that continue to need the support and education the IAL offers each and every year. It makes me wonder who will come forward to volunteer and share their leadership skills?

There were many other high points that I can recall and cherish from past meetings. Worth mention is finding out that I could blow up a balloon on the riverboat in New Orleans, or having others so excited about swimming with me they jumped in with suspenders and rolled up britches to try it, or passing my written exam at the close of the Voice Institute. Certainly being elected IAL President in Vancouver, B.C. was a very important meeting for me. Oh, how we danced at that banquet!

Elizabeth Finchem

 


 

Dorothy Lennox - Luminaud, Inc. - Vendor
Our First IAL - 1981 at an old Sheraton (no longer there) in downtown Philadelphia

 

My first real memory of the meeting was being shown by a hotel staff member how to kick the bottom of the elevator door so that it would close.

This meeting was a "big deal" for Tom and me. It was the first time we had set up as a vendor at a meeting and the first time we felt our "kids" were old enough to be left alone while we went out of town.

The vendor room was small - only about 6 or 8 vendor tables. One of the vendors was Siemens, which was the importer of the Servox back then, and we met Tom Beneventine there - "Mr. Servox." It was his first meeting, too. There were only 3 or 4 artificial larynges at the time. The Servox Inton, the Aurex NeoVox (now gone for several years) and our Cooper-Rand were being shown at the meeting - maybe one other from Great Britain - I don’t remember it’s name.

The IAL meeting staff and many members were very helpful and friendly - several of them are still coming to meetings - but many things were definitely different. There was no such thing as an oral adapter for the neck-held units There were very, very few choices in stoma covers and filters. And no TEPs. In 1981, the TEP was probably no more than pictures on a drawing board - an early dream of the doctors who developed it and introduced it several years later. In 1981 there were less female laryngectomees. A woman had never been President of the IAL nor had an electrolarynx user ever been president.

A lot of people really didn’t want to get near any vendors with electrolarynges. If we tried to make eye contact or offered to show them something, many would wave their hands in dismissal. Or they’d say something like, "No - we don’t need things like that!!" If we said, "Well, how about taking some information home to your club?" it would be "No - NO!" and they’d hurry away.

We soon realized that what we had heard from doctors was true of many laryngectomees, too. They felt that ELs were ‘‘crutches,’‘ ’the lazy man’s way to talk,’‘ "Very inferior to esophageal speech." Some laryngectomees apparently didn’t want to show the least bit of interest in ELs for fear that someone would think they were lazy, too, and thinking of using the "easy way out." Some wanted to help their fellow laryngectomees avoid this embarrassment. There was a lady there using one of our Cooper-Rands and another woman actually tried to pull the tube out of her mouth, saying, "What are you using that thing for? You don’t need that!"

The IAL By-Laws in effect then stated that the goal of every laryngectomee should be to learn esophageal speech. Those who had trouble with ES or couldn’t manage it at all were essentially "2nd class citizens" in the organization. How times have changed!!!

Back to the lighter side. The banquet was a very elegant affair. Many of the women brought lovely evening gowns and most of the men wore suits. In that hotel, getting to the banquet turned into a marathon. The hotel was very tall and narrow and the elevators were small. We were on the 17th floor, I think, with several floors above. Elevators coming from the top would be filled in just a few floors and the people on board would find the doors opening on every floor and would smile and wave to their waiting friends who couldn’t get in. Soon people on the lower floors got smart and began getting on the elevators as they went up, meaning that the higher floor people couldn’t get on. The people on the middle floors found themselves waving at friends twice - once as they went up and once as they went down. I think it took at least half an hour to get everyone down to the banquet.

There was dancing after the banquet in an elegant room - and the band was very loud. That is one thing that hasn’t changed. Whenever there is a band or DJ at the IAL banquet, they apparently have the idea that if people have trouble speaking very loudly, they can’t hear well either so the group tries to be helpful and play at top volume - and are amazed if anyone asks them to play more softly.

The other thing that hasn’t changed is that IAL meetings are usually great fun - like an annual class reunion where you get to spend time with old friends and see new places. We’ve only missed 3, maybe 4, since 1981. One was the 1st one in Kansas City. We’re very happy that we won’t miss KC this year.

 


 

David Blevins - 1998

 

I attended my first IAL AM/VI in Reno in 1999. After a year of trying the best professionals in my state had given up on my getting TEP speech. SLPs, Dr. Carla Gress and Dr. Dan Kelly at the Voice Institute came to my hotel room and worked hands-on with me.

I got my miracle of speech.

 


 

Susan Reeves - SLP
IAL Exec. Director

 

I have attended 13 IAL meetings. My first was probably my most memorable. It was in Seattle, Washington. I came to the Voice Institute for 5 days and then went to the IAL Annual Meeting for 5 days. Shirley Salmon, Mary Jane Renner, Zilpha Bosone, Frances Stack were my Voice Institute instructors. Speech pathologists and new laryngectomees were partnered up in the Voice Institute for 5 days and twice daily one of my instructors would come into my open-door, hotel room where I was attempting to help my partner with some aspect of the road back to gaining a voice.

I learned so much and met so many wonderful people at that meeting. I met Joann Fenn, also from Seattle and studying to be a speech pathologist. I met Ellie and Joe Marasco, from Virginia, who’s love for life and for helping people was contagious. I met George and Marge Ackerman from Canada who both lit up the room with their laughter. I remember getting into Frances and Hank Scheffe, from Amarillo’s van, who drove about 10 of us to the horse races one afternoon while in Seattle.

I saw people swimming, singing, dancing, laughing and truly enjoying themselves. I left Seattle remembering people, not patients. The IAL Voice Institute and its Annual Meeting was truly a life altering experience for me as a clinician, but also as a person.


 

Charlie Blair - 1993

 

My wife Nancy and I have attended 8 IAL Meetings; San Francisco,Indianapolis, Nashville, Myrtle Beach, Atlanta, Boston, Burlington and Clarksville. We were fortunate to have been on the VI faculty for two of these, a great experience.

I never failed to learn something new and make new friends, plus getting to meet the legends of laryngectomee rehabilitation. My favorite memory is San Francisco of 1995, my very first IAL meeting.

Nancy and I consider IAL AM's our summer vacation and practically a family
reunion. Now where else but Nashville could you get your AM program autographed by
Little Jimmy Dickens? (Anyone heard of this guy?)

 


 

Pat Sanders - 1995
IAL, VI, DR, SLP, ES, AL, TEP, and a little BS


Just arrived home from the 1999 IAL Convention/Voice Institute held in Reno. I attended the VI from 8AM to approximately 6PM every day and my head was, and still is, ringing with voices, voice choices, voice problems and voice solutions. I will share what I remember and can dig up from their literature and my notes as we go along. I saw some interesting voice equipment that I had never seen before. There is a keyboard that speaks the word as you finish typing and hit space or you can set it to wait and speak the entire sentence or it will do both. It has a human voice. For someone, who can't learn to speak because of severe surgery, this is a wonderful device.

Then I saw a pneumatic speaking device and the man who was using it had a superb voice. It must take a lot of time to learn to use one, but if you are living in a place without electricity, the 'no battery' feature would be the way to go. It has a cup that goes over the stoma and a tube that goes into the mouth. Very simple ($112). There is another that uses a reed ($69). I tried the pneumatic one and was barely able to get out a recognizable "Hello" because I couldn't get my timing right and kept doing everything backwards. From watching the expert, I would say it has to be played with practiced timing at the stoma cup, but it would be fun to have one to play with!

I have known very few esophageal speakers (ES) since our thrust here in Birmingham is using the tracheo-esophageal puncture (TEP) and the artificial larynx (AL), but I ran into a lot of ES folks at this convention. Dr. Ed Stone, who is one of the best and most entertaining lecturers you could find anywhere, headed the VI Institute and faculty. The other members of the faculty were excellent lecturers but most were heavily slanted toward ES. This was rather exciting in one way because I would get to learn something new, but, as I listened, I began to realize how many of them put forth the impression that if you didn't do it the ES way, you were copping out. One speaker mentioned TEP as a way of speaking that left you 'one handed'. Another ended her lecture with the comment that you might even decide to reverse your TEP. I found this same attitude among some of the ES laryngectomees.

One man, using an AL, who was there to learn ES told me, "I don't want one of them IMPLANTS!" Did anyone ever explain the puncture to him? I doubt it. A lady ES said she thought either method was fine but it was all about choice and she was bothered that we are not being offered a choice here where I live. True, but I wonder if the TEP was thoroughly explained to her and if she had any more of an 'educated' choice that I did. Our choice of a doctor will indicate which speech-language pathologist (SLP) we use and most SLPs will recommend the brand of AL, or type of speech and prosthesis that they like. Bias will show. A shrug of the shoulder, a facial expression or a tone of voice indicates that something s/he is saying is not worth talking about. This is not necessarily bad, because the SLP that is working with you would do you a disservice if the recommendation were for a method of speech in which s/he is not proficient, unless there were other coaches available.

As I listened and watched at the convention, I heard marvelous speakers but I also heard people who could be barely understood. No matter what method of speech, it seems those who articulated well were the easiest to understand. Timing, phrasing, and enunciation are the keys to any one of these methods.

(Original Report, written for HeadLines) I have attended all since 1999, excepting 2006.

 

 

 

 

 

Being the Best You Can Be

Dave Ross

 

It is easy for a Laryngectomee, new or seasoned, to fall into the doldrums of failing to produce the best, most intelligible, voice he or she can master. I have a pretty good TEP voice but occasionally must be reminded that I get lazy and do not properly enunciate my words. It requires extra effort, patience, practice and continuous vigilance that we did not have to concern ourselves with when using our original voices and they were still in “good working order”. As laryngectomy patients, it is easy and often convenient to consider ourselves “handicapped” or "disabled" and therefore deserving of special attention from society in general as an offset to our condition.

An unintelligible voice can be embarrassing but, also, can be used used to make others feel sorry for and/or draw attention to one’s own self. It is rude of us to just assume that folks will do whatever they can on THEIR end to understand you. Is it the listener's responsibility to stop what they are doing, turn the background noise down or tune it out and pay close attention, watching for signals that indicate what you want to say when you are not making every effort to be clear in your speech? Although such an attitude is a common human tendency, it can be a major obstacle to a Laryngectomee’s total rehabilitation.

Rehabilitation is not just about physical recovery. Perhaps more important is the mental and emotional aspects of losing one's natural voice and then finding the way back into the mainstream of life. Fulfilling responsibilities to family, friends and society in general goes a long way in finding the sometimes long path to such a place.

This post is not about the method of communication you have chosen or are able to use but rather being aware that “Being the Best You Can Be” is strong medicine and a responsibility.

Dave in Florida
 

 

 

 


 

The Brave Frigate Gloworm

 

I dedicated this poem to a fellow Laryngectomee at my local club, as an ex-sailor he represents the Royal Navy, who I have always admired. I first met Peter Malling and his wife Myra, the night before his operation, when his throat cancer would be hopefully removed, but sadly his natural voice would have to be cut away. I was called in to speak to him with my artificial voice, and I could see it gave him confidence for the future. I visited him again a few days after the operation and he was getting on fine, but having to be fed with liquid food by a tube up his nostril, which dripped from a stand all the way down into his stomach. I couldn't resist a poem and wrote,

 

 

The Fun of Liquid Food


That food pipe up nose, was nothing new,
as Peter slowly sniffed his food.
Nurse Chrissie said, " Don't shout,
or wave it all about,
The rest will be wanting one too"!

 

Peter progressed marvellously, and like nearly all Laryngectomees, did not let his disability impede his life. In fact he took up that most dangerous of sports for a neck breather, that of swimming, and he has been an inspiration to many. He is an ex sailor, and with his silvery grey naval beard he is the very epitome of Captain Hornblower’s Bosun, played in the film by James Robertson Justice. As an ex-army man I have always admired the Royal Navy, so I will dedicate this poem, which is a true story, of how the men of the Frigate Gloworm gave their lives in order to save many troopships fleeing from a German Battleship. So a dedication to Peter, representing his old colleagues.


The Brave Frigate Gloworm



" The convoy will scatter, we prepare to attack,"
said the captain quietly to signalman Jack.
The Gloworm turned quickly, back to the east,
the troopships they hurry, away from the beast.

The battleship Hipper was seen by them all,
we could easy outstrip her, our Frigate so small.
But we could not run with the convoy to flee,
back to England this day, across the North Sea.

We are but a minnow, but we streak towards the shark.
Too far to speed torpedoes, but our tiny guns they bark.
Their shells rain down on the sea around,
we emerge each time, our enemy confound.

" Torpedoes now gone captain, leaping straight and true,"
The Hipper turns so quickly, behind her smoke so blue.
" The convoy sir, is now out of sight,
and within the hour it will be night"

A missile then hit Gloworm, she was blasted all apart.
That hateful German shell, I saw tear out her heart.
All of us, we perished, Nelsons' men right to the last.
but we saved all those young soldiers, so long now in the past.

So if the name " Gloworm", you cannot just recall,
please remember my shipmate heroes, true sailors one and all.

 

 

 

 

 

Subject: Raised on a farm

 

I was one of those lucky kids whose grandpa had a working farm. He raised chickens to sell the eggs to the big grocery stores in San Antonio. Once a year he would buy a whole box of chicks and we would slaughter all the setters that weren't producing enough to pay their way.

He raised pigs that they would call free range now, meaning they would be put out the fields to root around all day until evening when we would call them in. Heeere pig pig pig. And they would come a running. And once a year we would slaughter and butcher a hog.

Plus he grew rotating crops through out the year .I remember Grandpa religiously reading the Farmers Almanac. He lived waaaaay out in the boonies on 400 acres of river front property that we kids would bath in instead of taking a shower or bath. Heck, it was the same water, so what was the difference? And the small town we shopped at was 20 miles from his place where we were known by everyone in town. If a stranger came to town everybody knew it. Life in small town south Texas is a laid back affair. That's why the folks that move away, tend to move back when the hustle and bustle of big city life gets to them. It may have been hard work, but I loved growing up on the farm, and miss it since he passed.

Angelique Erickson
SA Tx, lary 09/10
 

 

 

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 31 new members who joined us during April 2011:

 

Kevin Benner
Newport News, VA
Gary W. Benson
Claycomo, MO
Peter Blom - (Caregiver)
Abbotsford, BC, CAN
     
Dan Clipson
Oklahoma City, OK
Bruce Ewell
Norwalk, OH
androgeo Gianferrari
Gorduno, Switzerland
     
John Gray
Forest Hill, MD
Rebecca Hancock - (SLP)
Lexington, KY
Brenda Herrmann
Jerome, ID
     
Lisa Keller - (Caregiver)
Los Gatos, CA
Daniel Krich
Carpentersville, IL
Ronald Kniffin
Rochester, NY
     
Dianna Marsh
Parkersburg, WV
Terry Moore
Waxhaw, NC
Sherri Norton - (Caregiver)
Oakdale, CA
     
Louise Pothier - (SLP)
Toronto, CAN
Janelle Reske - (SLP)
Chicago, IL
Leona Scheidman
Abbotsford BC, Canada
     
Diane E. Schultz - (Caregiver)
Rochester, NY
Marge Sebeck
Onalaska, TX
Ronald Sebeck - (Caregiver)
Onalaska, TX
     
Bruce Smith
Minot, ND
Rick Thompson
Pensacola, FL
Tammy Thompson - (Caregiver)
Pensacola, FL
     
Joanne Tomlinson
Plant City, FL
Barbara Tucker
Destin, FL
Nada A. Votto
Wyckoff, NJ
     
Ralph Votto - (Caregiver)
Wyckoff, NJ
Joseph Waynard
Severna Park, MD
Helen West
Henderson, NV
     
Janice Williams - (Caregiver)
Henderson, NV
   

 

 

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