Internet Laryngectomee Support
So, what IS the appeal of flying or driving someplace to stay in an expensive hotel, sleep in a strange bed, eat strange food, and be surrounded for days by people who talk funny?
While the percentage of us who do go to conferences or conventions for laryngectomees is not great considering our total numbers, many of those who come say that once they have attended one they wouldn't miss
Many remember the exact number they have attended and their locations as they might the number of radiation treatments they had, the date of their laryngectomies, and even the birthdays of their own children.
Some also say that when the convention is over they immediately begin planning and anticipating the next one, and start counting down the months and days and saving their money.
In January an e-mail sent to the membership asked this question which concluded with:
"...I was wondering if those who have gone before or plan to go would care to share your reasons with others who might have not gone to one before, or not know what they would gain from going?
Why do you go or plan to go?"
Nashville was my first convention and I'd have to say that it was truly inspiring to hear how well so many people spoke.
At that time, I could speak only with my Servox, although I had a TEP. But with the help I got at the Voice Institute plus all the encouragement and "mentors," I now manage just about full time with my TEP.
Of course, meeting everyone up close and personal was the best. I still marvel at the quality of many of the voices including some bona fide singing.
Awesome!!! (Libby Fitzgerald)
I attended my first IAL convention in Hot Springs and haven't missed one since.
They are like the World's Fair--they get bigger and better every year!! I have yet to meet a lary who did not have something to offer to a fellow lary.
When I leave one convention, I am making plans to attend the next one. (Mark Crowe)
Nashville was my first convention, and my wife and I enjoyed every minute of it.
The city was fun to explore, the hotel was great, the area restaurants were great, and, most importantly, meeting fellow larries and their spouses, friends, and family.
Such diversity in every way, not just speech options but cultural, regional, and occupational diversity as well.
Listening to people like Jim Shanks teaching (speech techniques and putting people at ease) absorbing hints, tricks, and nuances that specifically help make our quality of life more normal and enjoyable.
Lesley is looking forward to going to Myrtle beach for all the reasons above and to revisit with Pat W. Sanders, Ellen Byrne, Herb and Sally Simon, Jim Lauder, David Blevins, Bert and Cathy Haberfeld, Dutch, Terry Duga, Max Hoyt, Charles Lamar, Joan Anderson, etc., etc. (Bob Herbst)
First you realize you're not alone, and you meet great people from everywhere.
You learn a lot and you can see and hear the updates for laryngectomees. You can ask any questions and you'll be sure to have an answer.
The IAL is a big family and I'm proud to say I'm a part of it. (Wilda and Rae Provost)
Last year we went to Nashville, and the IAL for the first time.
We met a lot of people with more problems than I have, some with less, new larys and old larys.
We all have ideas and comments to offer. We met great people and finally was able to put faces to people we have "talked" to for months via the Web.
We need to have the reinforcement that we are not alone. There is always someone to reach out to and that someone will respond.
And we also enjoy seeing the vendors again. Almost all of them come to the FLA convention, so it's like old home week.
We go to conventions for learning, loving, and caring. (Judy
I finally went to the IAL last year in Nashville.
I waited ten years to do it. Here are the practical reasons for going: 1. Irrespective of what type of alaryngeal speech you use, and how well you speak, you will learn things that make you a better speaker.
2. You will make some new friends, ones that you would never think of making.
3. You will come away encouraged. (Philip Clemmons)
It's a great vacation away from the cares of the world and, two, it's great to be able to put faces with names, and three, enjoy great fellowship such as the WW dinner.
Myrtle Beach will be the 22nd IAL Annual Meeting that I have attended.
I have also attended statewide meetings in four states. Why? I go to learn the latest news related to laryngectomee rehabilitation, to make new friends, and to greet many, many old friends.
It has been said that going to an IAL meeting is like going to a family reunion!
(Mary Jane Renner)
I just want to back up Mary Jane Renner one hundred percent.
Although she is one up on me, it will only be my twenty-first in a row, and, as well, never having missed a Texas Lary. Assoc. meeting, adds up to a lot of wonderful experiences.
And yes, it is like a happy family reunion. Keep Smiling. (Martha Reed)
Count me in. I already have a room and my dear roommate in Myrtle Beach.
The only thing that is missing is my ticket BUT, time enough to make reservations.
Myrtle Beach will be my 5th convention on your side and I am looking forward to it.
First off I must say that I am not unique or different.
I suffer from what many would call "committee" paralysis. I have a committee in my head that tells me I am unique.
This committee also tells me that I am suffering from PMS (Poor Me Syndrome).
This condition of PMS tells me that I am worse than anyone else, different from anyone else, and have a case of terminal uniqueness.
My local club which is very small helps me to overcome this condition. The IAL convention not only helps me to overcome my PMS but allows me to gain a very large amount of gratitude.
I have been extremely blessed with the ability to talk (TEP), live a relatively normal life and continue to have a wonderful caregiver (WIFE) to share my days with.
I see others at the IAL that do not have speech as good as I, can't move their body parts as well as I, have difficulty eating and, in general, do not have the freedom to enjoy life like I do.
My cup runneth over. I also find the vendors to be a great source of information that enhance my gratitude.
What more could I ask for? (Max Hoyt)
My first IAL was in Cincinnati, OH in 1991 and I have made every one of the IAL meetings except New Orleans in 1992.
I look forward to these each year and meeting people that I talk to over the phone.
I must admit that I do not get the full effect of the meeting because of my work with Inhealth. (Richard Crum)
As for the Voice Institute, it is the best.
They worked our rear ends off, but we learned more about laryngectomees and our voices than you can imagine unless you have been to one of these.
You will never regret going there...and remember, there are scholarships available that will help with your expenses and if you want to go as a pupil, you will be getting the best advice in the country...free!
I attended my first IAL meeting for two reasons: First, as a desperate local President who was out of ideas for maintaining a dynamic local club.
Second, I was eager to meet in person other female laryngectomees who spoke esophageally, and I wanted to see how they covered their stomas.
That meeting was like walking into sunshine. Since then I return annually to learn, to share, to be with old friends and make new ones, to represent my local club and state association, and carry forward the IAL's mission of laryngectomee rehabilitation for our new arrivals.
We decided to go to Nashville and boy did we have a good time.
John met so many people that he talked to over the Internet, plus other interesting people.
We even met some that lived in our area, which we keep in contact with since we been home.
Looking forward to Myrtle Beach, which we already made reservations. Not only was it exciting for John (who is the laryngectomee) to go, but for me as well.
Everyone was so friendly and outgoing (especially when we thought we were the only ones going though this).
I found many interesting vendors and they answered my questions with knowledge and accurately.
If they didn't, they found someone who could. If you want to get ahead of the game, come to Myrtle Beach with us and see for yourselves.
(Ms. John Ray, wife of RayTreeman)
I have met many laryngectomees via WW and conventions over the past 6 years and I have never met one who said "I'm sorry I went to that convention."
Especially for the new laryngectomee, if it's at all possible -- remember that old commercial - TRY IT, YOU'LL LIKE IT!! (Stan
Place the Face (Part 2)
The June issue of the WWJ contained the photos and names 59 members (or former members) who are scheduled to be in Myrtle Beach.
How many of these additional members of WebWhispers do you know by name? Check your answers below.
IAL Annual Meeting . . . A Three-Ring Circus?
The larger old time circuses had three rings under the "big top" circus
tent, each with its own separate and simultaneous act.
If one didn't interest you, you just shifted your attention to another. The same holds true for an IAL conference which is crammed with a wide variety of things to do.
Two separate programs run concurrently at the yearly convention of the IAL: the Annual Meeting and the Voice Institute.
Periodically, the AM schedule takes precedence and VI activities are suspended so that VI participants can attend these functions.
The best way to picture what goes on is to see it in graphic form.
Those who attend the Annual Meeting are welcome to sit in on any session of the Voice Institute on a space-available basis.
But, unlike the VI registrants, they will not be provided with handouts or receive individual voice training.
You could classify what goes on at the IAL meeting in a number of different ways.
One to look at it is to put activities into categories such as recreational, organizational, educational, and business-related.
Fun and Games
There are lots of social activities beginning with the Meet and Greet Reception on Wednesday.
This year it is cosponsored by Inhealth and Jim Lauder, and Jim promises some surprises with the theme of "A 50's Beach Party."
The traditional sing-a-long is set for Thursday night, where those interested sing the oldies.
The WebWhispers annual dinner will be held on Friday evening and Pat Sanders has obtained a menu which can only be described as fabulous.
Cocktails before the dinner are courtesy of Bruce Medical. The traditional Fun Show (an original production created each year for the occasion and performed by larys) takes place on Saturday afternoon and showcases many of the talented individuals in the group.
Last year, Frank Deam's deadpan version of "Hello, Young Lovers" had those in attendance laughing until they cried.
The cocktail party that night precedes the always fabulous culminating social event, the Annual Banquet and Dance.
Many additional informal receptions, refreshment breaks sponsored by the vendors, as well as meals and chats with new friends and old add to the social life available for those attending.
This opportunity to make new friends and renew old friendships is a constant theme in reasons given which keep people coming back.
Some people also arrive early or leave late as they manage to combine vacation time with the convention, schedule some golf games, or trips to amusement parks and outlet malls, to say nothing of the beach itself.
First time attendees are often surprised at the warm welcome they receive into this IAL family.
No one stays a stranger for long unless they want to.
The Organizational Activities
If you are attending as a Delegate or have any interest in the internal workings of the IAL, you may attend any committee or other meeting of the Association, although if you are not a Delegate or member of the committee in question your ability to participate other than as an observer might be limited.
Committee meetings begin on Tuesday afternoon, and the Board of Directors meets on Sunday.
Election of IAL officers and new Board members as well as bylaws amendments and reports by the officers and committees occurs at the Delegates meeting on Saturday afternoon.
Stuff for Sale
An additional thread which runs through the convention is a commercial one since the major vendors and distributors of laryngectomee products are in attendance displaying their wares.
Three vendors perform free routine maintenance on artificial larynges. The Siemens technician, Lenny Komar, will be there to service Servox ALs and to convert older battery chargers to work correctly with the new type batteries.
Also performing this same service on Servox instruments will be Jim Lauder, who will also make simple repairs on other brands of ALs.
It was Jim who first offered free AL service at the convention. Griffin Labs will also perform the same service on TruTone and Solatone ALs.
Many vendors run raffles on ALs, amplifiers, and other expensive items.
Many provide free samples, and several will be displaying brand new items.
A news hands-free valve/HME will be on display at the ATOS booth, for example.
Inhealth has a new shower collar and a number of other items new since last year including a new style flushing
pipet. Kapitex will be there displaying their wares including their excellent foam filters, and the Trachi-naze Plus, which is an HME (Heat/Moisture Exchange) filter in a glue-free housing which fits inside the stoma similar to the ATOS
The IAL Auxiliary runs a raffle, silent auction, and virtual yard sale on a number of very nice donated items.
And towards the end of the convention the prices are dropped to virtual giveaways.
Proceeds go to the IAL.
Education is at the heart of any Annual Meeting and Voice Institute as is clearly seen in program session titles.
Experts on issues of interest and concern to laryngectomees come from around the world to share their knowledge.
People come to the conference in order to learn for themselves, to take knowledge back to their local clubs and their work with new laryngectomees, and even as a job requirement in the case of practicing SLPs (Speech-Language Pathologists) who receive CEUs (continuing education units) for attending the VI.
Voice Institute registrants may also elect to take a test at the conclusion of their program which entitles SLPs to be listed in the IAL Directory of Instructors of Alayngeal Speech.
If a non SLP wishes to be listed in the Directory they also serve a one year internship before being listed.
The Myrtle Beach convention offerings can take you from the basics of cancer and treatment options presented by ENT MDs, to do-it-yourself basic AL repairs.
Sessions are offered on all three alaryngeal speech options, and just about every lary rehabilitation issue from dental problems, helpful exercises and water sports to sexual dysfunction.
A special session this year will focus on recommended CPR methods for use on and by laryngectomees, and another on HMEs with experts coming from as far as Europe to discuss their merits.
Special sessions are also offered on keeping local clubs viable, training hospital visitors, and tobacco use prevention programs.
This year the past is celebrated with a session which addresses how the organization and lary rehabilitation have changed over the years, and a session on laryngectomee rehabilitation in other nations with offers these potentially valuable contrasts.
WW webmaster Dutch Helms again is doing a session on "Larys and The Web."
His presentation in Nashville was outstanding with a live hookup and tour of our website and other websites of interest to laryngectomees. WebWhispers involvement in the conference is extensive, and one is hard put to find a name of a laryngectomee in the AM program who is NOT a member of WebWhispers.
It is still not too late to register for the conference.
The special hotel rate of $84/night single or double occupancy is still available until July 15th, but don't delay since when the allocated rooms are sold any overflow will be directed next door to the Sand Dunes Hotel.
To make reservations call 1-800-599-9872 and mention the IAL convention to get that rate.
A room upgrade to an ocean-view room is available for $97/night. In addition to registering for the Annual Meeting, it is also possible to still register for the Voice Institute.
You can register for either using the form in the May issue of the "IAL News" (available on the
larynxlink.com site under newsletters), or register on line at this address:
Myrtle Beach Home Page
If you cannot come this year, start planning now to join us in
2002 in Vancouver, British Columbia, Canada, eh!
World Health Organization Issues New Rankings
The World Health Organization in June released its rankings of life expectancy in different countries around the world based on a new formula.
The old way of ranking countries by life expectancy was based on simple mortality figures.
The new formula is called the Disability Adjusted Life Expectancy. This number gives the expected number of years to be lived in what might be thought of as "full health."
To get the DALE number, the years of expected living with severe disabilities such as blindness,
deafness, paralysis, etc., is subtracted from total life expectancy.
The top country for length of healthy life is Japan at 74.5 years.
It is followed in order by Australia, France, Sweden, Spain, Italy, Greece, Switzerland and Monaco.
At the bottom of the list are poorer countries where grinding poverty and rampant disease can reduce this new quality of life expectancy to a low of 26 years in Sierra Leone in Africa.
32 countries have quality life expectancies of less than 40 years.
"The position of the United States is one of the major surprises of the new rating system," says Christopher Murray, M.D., Ph.D., Director of WHO's Global Programme on Evidence for Health Policy.
"Basically, you die earlier and spend more time disabled if you’re an American rather than a member of most other advanced countries."
Even though the DALE number for the U.S. was 70.0, twenty-three industrialized countries ranked higher.
WHO reported some factors which help explain the U.S. ranking including:
many native Americans, rural African-Americans and the inner city poor "have extremely poor health, more characteristic of a poor developing country rather than a rich industrialized one"
HIV deaths and disability is higher in the U.S. than most developed countries
the U.S. is one of the leading countries in the world in tobacco caused death and disabilities
the U.S. continues to have a relatively high heart disease rate, based in part on high fat diets
"Fairly high level of violence, especially of homicides, when compared to other industrial countries"
In richer countries the gap between life expectancies for women compared to men continues to widen, according to the WHO report, with women living longer than men.
(Editors Commentary: The U.S. has the very best healthcare facilities and doctors in the world.
Sick patients from around the world come here to obtain the very best treatment.
This is certainly cause for national pride. But the sad fact remains that this quality of healthcare is not available to every laryngectomee, or any other American.
The U.S. has just not concluded at this point in its history that good quality healthcare is part of the birthright of every American and embodied in the rights to "life, liberty, and the pursuit of happiness" guaranteed to us all.)
Skin Tac Still Available
Some larys who use the glued-on filter and HME (Heat/Moisture Exchange filter) housings preferred Skin Tac to the newer silicon
adhesives because they believe it holds better, at least for them.
Some are also allergic to the newer products and were concerned when some vendors discontinued selling Skin Tac.
Others had complained that at least one batch of the old product was not as good at holding as others.
Inconsistency is, of course, important in any product. But lovers of Skin Tac can take heart, the Greiwes (Dave and Judy) and Terry Duga have discovered another source of the old product.
Skin Tac is sold by:
Torbot Group, Inc.,
1367 Elmwood Ave.,
Cranston, RI 02910, USA
WebWhispers IAL Delegates Are Myrtle Beach-Bound
By unanimous vote and acclamation, the following are your Delegates to the 2001 50th anniversary meeting of the IAL:
Dutch Helms -Texas - firstname.lastname@example.org
Bob Herbst - Connecticut - email@example.com
Bob Hodge - North Carolina - BHodge8937@aol.com
Max Hoyt - Delaware - firstname.lastname@example.org
Charles Lamar - Alabama - Neckbreather@prodigy.net
Reuben Pruitte - Kentucky - HPruitte@webtv.net
Pat Wertz Sanders - Alabama - email@example.com
Mike Rosenkranz - Florida - firstname.lastname@example.org
Answers to Place the Face
Top row: Barb Nitschneider, Marianne Peereboom Kooijman, Bill Ruby, Joe and Yoki Kelly, Nancy Ruby
Bottom row: Ron Gillette, Jack Nolin, Helen Stinneford, Paul McGreevy, Ruben Pruitte.
Still another reason to wear a stoma cover.
by Judy Greiwe
Welcome New Members
We welcome the 22 new members who joined us in June:
|L.D. "Rock" Bragga
Newmarket, Ont., Canada
Bullhead City, AZ
Darlene Foley (Siemens)
Prospect Heights, IL
DelRay Beach, FL
Mary Pat Henke (Siemens)
Prospect Heights, IL
Joseph John, MD - Caregiver
Fort Mill, SC
Lenny Komar (Siemens)
South Lyon, MI
Melissia Meredith - Caregiver
Allen Park, MI
San Jose, CA
Union City, NJ
As a charitable organization, as described in IRS § 501(c)(3), the
WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions
in accordance with IRS