Internet Laryngectomee Support
Vancouver, British Columbia, Canada, is a very beautiful city. Surrounded
by mountains, including snow capped ones, as well as located on the water, it
makes virtually every list of the most beautiful and livable cities in Canada
and the world. Flowers seemed to be everywhere.
The 51st IAL Annual Meeting and 42nd Voice Institute met in Vancouver from
July 9-14th. Congratulations to Elizabeth Finchem, Chair of the IAL Annual
Meeting Committee, and Murray Allan, member of the Committee and local club
host, for their work in putting together an excellent conference.
For those who attended, the first impressions of Vancouver were provided by
the very beautiful airport and the very charming lady bus driver who took many
of us from the airport to the hotel.
Attendance was under 300 for all participants, probably due to the distance
and cost of airfare, post-9/11 travel concerns, meeting outside the U.S. with
passport and currency exchange issues, etc. The Wednesday night Meet and Greet
reception was again sponsored by Jim Lauder and InHealth. It featured giant
roasts of beef along with an incredible amount and variety of fruits, veggies,
and other delectables and drinkables.
The Canadian flavor of the convention was evident in the Opening Ceremonies
which featured a bagpiper and two Royal Canadian Mounted Police officers
carrying the Canadian and American flags. Both national anthems were sung. The
Keynote Address was given by cancer survivor Judy Caldwell of the Canadian
Breast Cancer Foundations. She described and showed slides of a fascinating
program in Canada for breast cancer survivors which involves their participation
in a festive national sport, "dragon boat" racing. The speech was inspirational
and applicable to all cancer survivors.
Dr. Joseph Sniezek then gave an overview of larynx cancer and treatments,
Dr. Peter Stevenson-Moore talked on dental issues, and Dr. John Wu spoke on
hypothyroidism. Participants were reminded that laryngectomees are 20 times
more likely than the general public to develop hypothyroidism. Later in the day
Dr. Eric Blom provided an overview on TEP speech, and the traditional
Sing-A-Long rounded out the evening.
The Friday program began with a session by Jim Lauder, Lenny Komar from
Siemens, and Tom Lennox on troubleshooting and making simple repairs to ALs.
Jim and Lenny are, at present, the only authorized service providers for the new
Digital Servox as well as the older model Inton in North America. This session
was followed by a fascinating presentation by Dr. Corina van As of the
Netherlands on restoring the ability of larys to smell (see separate article
At the swimming pool the Larkel was demonstrated, and Elizabeth Finchem, Pat
Sanders and others demonstrated how they swim by covering their stomas. A
session on CPR for larys began the afternoon sessions, and Dorothy and Tom
Lennox gave a presentation on choosing and using the right voice amplifier,
George Ackerman hosted a session on "Laryngectomees Around the World" with
representatives from more than a half dozen countries, and Dr. Jim Shanks gave a
presentation on traditional esophageal speech. The WebWhispers reception and
dinner rounded out the evening (see separate article below).
On Saturday morning WebWhispers webmaster and founder Dutch Helms conducted
a session with Pat Sanders on "Web Surfing Hints for Laryngectomees." IAL Board
members Bob Mehrman and Wayne Baker gave a presentation on Tobacco Education,
Dr. Shirley Salmon described the proper training of hospital visitors, and there
was a panel discussion on the "Dynamics of a Thriving Club" where
representatives of some of the strongest laryngectomee support clubs shared
ideas. This topic will be a major one in the September issue of the IAL News.
The IAL Delegates met to conduct business, the Annual Fun Show was held in the
late afternoon, and the Meeting concluded at the annual Banquet and Dance. The
banquet food was great, and many danced to the jazz and old favorites played by
Of particular interest to many AL users was the all new digital Servox shown
by several vendors. While it requires getting used to, it has a number of
features including the ability to fine tune the tone and volume of the two
buttons. The buttons can be "tuned" in terms of both pitch and volume. This
can be done manually, or via a computer interface.
Elected to IAL offices on Saturday were Elizabeth Finchem (CA) President,
Bob Mehrman (MA) Vice President, Barb Nitschneider (IL) Secretary, and Ed
McDermott (CAN) Treasurer. Murray Allan (CAN), David Blevins (VA), Jay LeMaster
(NY), Barb Nitschneider (IL), and Marianne Peereboom-Kooijman (Netherlands) were
reelected to the Board of Directors. New Board of Directors members elected
were Philip Clemmons (AL), Mark Crowe (GA), Nancy Reynolds (NC); and
Delegates-at-large SLPs Dr. Dan Kelly (OH), and Tammy Wigginton (VA).
Members Comment on Value of Attending
the Annual Meeting
"What I got from going to
Vancouver was . . . ."
Members who attended were asked to respond. Here are quotes from the first
group of responders:
It is like going to our yearly family reunion. It is
so nice to see so many people we have made friends with over the last four
years, and yet a chance to meet and greet new ones each year.
This was my first time to go to an IAL conference. I
belong to a small new voice club and my exposure to laryngectomees has been very
limited. To me it was like going into another world. I learned so much and
came home inspired. I was able to put a face to many people that I have talked
to on WebWhispers. I learned a lot about products that are out there for
laryngectomees. Seeing the products firsthand is much better than a catalog.
Great memories and a wonderful new recipe, "Wasabe Mashed Potatoes." So
simple, yet so good.
The speakers were excellent, the venders were very informative, the dinners
were wonderful and the sing-a-long was fun.
What was the so important for me was the camaraderie that I experienced and
the feeling of being home among my own. I was inspired by a lot of the members
and their continuation with life even though their lives were changed forever by
This was my third conference and each time I come home with more knowledge
and feeling very up. What more could I wish for? Such encouragement is
It was wonderful to meet the people who I e-mail or hear from. I also got
to meet new people. I think going to the convention is wonderful experience and
if you can, you should go next year.
I really wish every laryngectomee could attend one of these conferences. I
know they would walk away with a different outlook on being a lary. Everyone
that was there scattered to the four winds, but left a little of each of us with
each other. There is the sense of belonging to one huge family and it really
gives meaning and comfort.
I arrived in Vancouver feeling a little discouraged. I have been trying to
learn esophageal speech and was having some problems. I had sessions with Tanya
Eadie, Jim Searl and Shirley Salmon, and I felt much better about it. Then Jim
Shanks talked to me and assured me that I could do it. I felt like I had a new
lease on life and I got encouragement from Elizabeth Finchem.
One of the greatest benefits to me was getting a name
of a speech pathologist much closer to me.
I wouldn't trade the
experience for anything.
I loved all of the free stuff I got from the vendors!
The delight in meeting such a variety of wonderful people from all over the
As new members of Web Whispers and attending our first IAL Annual Meeting
we enjoyed getting acquainted with other members. The agenda each day was very
interesting with very good speakers.
This is my fourth convention. I cannot imagine missing one. I gain so
much value from them. The benefits are educational (the knowledge is valuable
to me, but I can also pass on what I learn to others), social (I feel like I now
know at least half of the people who typically come to the Meeting, and get to
meet the new other half), recreational (it is a mini-vacation). Each time I
have gone I have returned feeling that I more than got my money's worth...and on
so many different levels.
As a VIP (at the Voice
Institute), I got knowledge from meetings and one-on-one contact with an SLP.
Next was being able to put faces and "voices" with the "words I've lived by" for
over a year through e-mail from WW. After this, my first, my plans are NOT TO
MISS another one, as long as I am able.
I will keep coming as long as there is a conference
and I am able to attend. It is "medicine" for new larys I know. So many have
gone to a lot of the conferences and it is old hat. They come for the
fellowship and the general business of the club. But for a newcomer it is
(Thanks to Rita Burfitt, Dawn Douglas, Doris Gifford, James and Janet Gilbert,
Patty Jones, Roger Jordan, Merritt Oakes, and Mary Glyn Spivey for
Hands-Free, Glue-Free II
One of the many interesting sessions at the Vancouver Meeting provided a
reminder of an alternative solution for those who have tried to use an HME
(Heat/Moisture Exchange) filter and/or hands-free valve but who experienced
various problems including losing the seal or allergic reactions to the glue.
Many can use the glue-free Barton-Mayo Button in combination with an HME and
hands-free valve (see "Hands-free, Glue-free" in
Using the Barton-Mayo does require that the stoma be pretty regular in
shape (circular), and have regular and even surfaces on both sides of the
stoma. However, there are some alterations which a clinician can make to the
Button to compensate for some irregular stoma surfaces. It is also possible to
get the Barton-Mayo custom made for the contours of an individual stoma. ATOS,
Bivona and InHealth sell the Barton-Mayo ready to use Buttons (in the $80
These come in short, medium and long, and in diameters of from size 9 to
14. The Barton-Mayo is a prescription item and you must be measured for both a
correct diameter and length in order to get a proper fit. Those who already use
lary tubes will probably need to get the next larger diameter size in order to
get an airtight fit, and the shortest tube you can use will help in obtaining
the desired tightness and seals on both sides of the stoma wall.
The Barton-Mayo Button can be used in two different ways. One is with the
HME filter. The HME filters from both ATOS and InHealth fit the Button. The
filter cassette from ATOS (which now requires a prescription) can be used by any
of those who use the three major ways of alaryngeal speech: TEP (Tracheo-Esophageal
Puncture) with prosthesis, standard esophageal, and artificial larynx. For TEP
speech you use your finger to temporarily redirect the air from your lungs
through the prosthesis and into your esophagus for speech. Artificial larynx
users and esophageal speakers can also get the benefits of an HME filter used
with the Barton-Mayo.
But for TEP speakers to obtain hands-free speech they need to use the
handsfree valve or valve/HME combination. The one from InHealth is called the
"Adjustable Tracheostoma Valve" (ATV), and the ones from Bivona are the
Tracheostoma Valve and Tracheostoma Valve II.
For those who have attempted to use an HME filter and/or handsfree valve
with a glued on housing but abandoned it because of problems in keeping the
seal, allergic reactions to the glue, or just because of the additional hassle
of using them, might want to see their clinician and see if they are a candidate
for the Barton-Mayo.
The WebWhispers Banquet
The annual WebWhispers reception and
banquet was held on Friday evening, July 12th. The reception was hosted once
again this year by Richard Najarian of Bruce Medical. The banquet was organized
by IAL Vice President for Member Services, Libby Fitzgerald. The menu and
facilities were excellent.
Pat Wertz Sanders was announced as the winner of the Casey-Cooper
Laryngectomee of the Year Award for 2002 in recognition of her ongoing service
to laryngectomees. Congratulations, Pat!
Individuals receiving Achievement Certificates for "their dedication,
initiative and willingness to serve all laryngectomees and assist in their total
rehabilitation" were: David Blevins, Elizabeth Finchem, Paul Galioni, Jim Lauder,
and Marianne Peereboom-Kooijman. Lorrance Lancaster was recognized as the
individual traveling the longest distance to attend the Meeting--- 8,315 miles from
Clemmons and Janice Hayes in Anti-Smoking Video
members Philip Clemmons and Janice Hayes are featured in a new anti-smoking
television film, "Fatal Addiction: Tobacco's Deadly Grasp."
Philip, who was just elected to the IAL Board of Directors in Vancouver,
is shown in the videotape trying one of the safety harnesses his business
manufacturers, and later in an interview.
Janice, who is a member of the host club for the 2003 IAL Annual Meeting in
Atlanta, is shown speaking to students as well as in an interview.
The video clips can be seen at this Internet address:
Congratulations Philip and Janice.
Learning to Smell Again
As we know, the laryngectomy operation separates our trachea and lungs from
the upper part of the
respiratory system--the nose, mouth, and throat. A
side effect of this is to stop the intake of respiratory air which also conveyed
odors. In addition to being deprived of one of the senses, we also lose a
portion of the role the nose played in enhancing the taste sensation. The taste
sensation is a combination of sensations conveyed by the tongue and nose.
Additionally, not being able to smell can constitute a safety concern in not
being able to smell smoke or spoiled food. An additional function of smell is
to trigger salivation, which aids in digestion.
A session in Vancouver on restoring the ability for
laryngectomees to smell was conducted by Dr. Corina van As of the Netherlands
Cancer Institute. Dr. van As, along with other researchers in Europe, has shown considerable interest in
helping laryngectomees retain optimal breathing efficiency as well as restoring
the ability to smell. These aspects of the "total rehabilitation of
laryngectomees" has received less attention in North America. Dr. van As
described an experimental treatment program for laryngectomees which taught them
new ways of moving air into the nose for the purpose of smelling.
The basic idea of the approach to learning to smell is to create a vacuum
in the mouth area. The method is taught in three stages. The first is a very
large movement. The jaw is lowered while keeping the lips closed. The soft
palate (roof of the mouth) is relaxed. The patient also focuses on lowering the
tongue along with the lower jaw. The movement needs to be practiced in a
relaxed manner with calm breathing. The movement resembles a large chewing
motion. It creates a vacuum, and air moves into the nose. Nearly 90% of the
patients in the study could learn the movement after just one therapy session.
But since the movement is attention-getting, the same vacuum needs to be created
in a less obvious way.
The second step is to make it less obvious by not lowering the jaw, but to
create the vacuum primarily with the back of the tongue. The back of the tongue
is raised to the roof of the mouth (back of the palate). Then it is lowered.
The third stage has been previously described as the "polite yawn" method.
If you yawn with your mouth closed there is a subtle increase in the size of the
nasal and mouth cavity. This creates the vacuum and permits some air to enter
the nose for the purpose of smelling.
During the study patients were given visual feedback that they were moving
air into the nose by means of a device called a water manometer. The vacuum
created in the nose moves water contained in the device towards and then away
from the nose as air is moved in and out of the nose. This helped the patients
learn the methods.
Dr. van As concluded that patients in the study reported improved taste and
appetite, as well as increased ability to smell. Approximately one half of the
patients continued to use the method over time.
Additional findings from the WHO Report
In June 2002, the World Health
Organization's International Agency for Research on Cancer (IARC) released the
findings from a group of researchers who reviewed all the significant scientific
evidence related to tobacco use and cancer. In the new report from IARC, which
will be published late this year or early in 2003, additional sites for
tobacco-related cancer have been confirmed
-- cancers of the stomach, liver,
cervix, renal cell carcinoma, and myeloid leukemia. These are in addition to
lung, larynx, and a number of other cancers previously linked to tobacco use.
The research also indicates that passive smoking causes lung cancer, with
an increased risk of 20% to 30% among those exposed to environmental tobacco
smoke who never smoked themselves. The new IARC report also discusses the
overall disease burden caused by tobacco. Half of all long-term smokers are
killed by a tobacco-related disease, with half of those deaths occurring between
the ages of 35 and 69 years. Those killed by tobacco lose on average 20-25
years of life expectancy.
New Technologies in the Works
In the June 24th issue of
Newsweek an article reported on technologies being worked on at
Massachusetts Eye and Ear Infirmary by Dr. Robert Hillman and others. One
project would attach a sensor to the neck muscles of a laryngectomy which would
pick up the impulse that the user was speaking. This signal would be wirelessly
transmitted to something resembling a Walkman player worn on the waist. It
would transmit a signal to a very small and inconspicuous tone emitting device
which was attached to the neck. While the technology is similar to an AL,
efforts are being made to make the voice more easily modified in both volume and
While this hands-free technology is only now being worked on and it will be
some time before it is commercially available, it is heartening to know that,
despite the fact that there are few laryngectomees, that improving our lives is
on the agenda of the research community.
Welcome New Members
We welcome the 29 new members who joined us during this past month:
Penny Schilling Bise, CCC-SLP
Laura Getman, MA, CCC-SLP
Regina Lynn Hoover
Dr. Enrique Hülsz
Mexico City, Mexico
Meaghan Kane, M.A., CCC-SLP
San Francisco, CA
Brandon Marchand - Communicative Medical
Kathleen McQuilling - Caregiver
Cheryl Paquette - Caregiver
New Boston, NH
Charlie Puckett II
Dr. Ed Stone, PhD
Hyogo Pref., Japan
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