Internet Laryngectomee Support
Party Time at the Beach
The IAL's 50th anniversary Annual Meeting celebration was held in Myrtle Beach, South Carolina from August 15th through the 18th, and beginning a day earlier for Voice Institute participants. More than 400 laryngectomees, healthcare personnel, vendors, and friends were in attendance.
The primary planner of the conference, Howard Moore, was unable to attend because of poor health (see article below). He was ably assisted in planning the conference by WW members Rae and Wilda Provost, and IAL Executive Director Jack Henslee.
The Annual Meeting kicked off with the traditional "Meet and Greet" reception on Wednesday night which spilled out of the Kittyhawk Room and into the patio area with its beautiful ocean view. After dark we were treated to a fireworks display from an adjacent hotel. This year the reception was co-sponsored by associate WW members Jim Lauder and the team from Inhealth including Jobeth Seder, Richard Crum, and Neil Grenham. In addition to the usual reception finger foods, a giant roast of beef insured that most people quickly forgot about any post-reception dinner plans. A strolling musician helped create the beach party atmosphere, and WW member Janice Hayes won the prize for the best '50s costume, a vintage one piece swimsuit.
Thursday featured sessions by Dr. Mark Weissler, M.D., and Terry Day, MD. Tammy Wigginton, an SLP from Anderson, SC introduced all major speakers and activities. Drs. Weissler and Day provided an incredible amount of information on head and neck cancers and the history of laryngectomy surgery. Later in the day, Drs. Eric Blom and Betsy Davis, DDS, provided up-to-date information on TEP development and dental issues, and J. Nourse described therapies for neck and shoulder problems encountered by some laryngectomees.
All participants had nearly continuous access to expert MDs and SLPs throughout the conference to answer their individual questions and concerns. Dr. Ron Hamaker, M.D., from the Head and Neck Cancer Rehabilitation Institute in Indianapolis (and a cancer survivor himself), was an ever-present resource throughout the conference.
WW webmaster Dutch Helms kicked off the sessions on Friday morning with an excellent presentation on "Larys and The Web." He was ably assisted by our own WW President, Murray Allan, at the keyboard. Dutch took the audience from getting on line via various kinds of equipment and services through a tour of our WW website and the IAL site.
This session was followed by one on getting the most out of artificial larynges by Dr. Shirley Salmon, and an excellent panel discussion on HMEs (heat/moisture exchange filters) by representatives from ATOS and Inhealth. A very dramatic and thoughtful presentation on tobacco education followed by WW members Bob Mehrman and Wayne Baker. Bob's public service TV advertisement, which premiered during last year's Superbowl game, was the lead article in the March 2001 issue: WebWhispers Journal - March 2001.
WW members Pat Sanders, Elizabeth Finchem, Bob Herbst and Jim Kelly all participated along with Martha Strasser from Germany in demonstrating water activities. A very good crowd was there to watch Jim and Martha demonstrate the use of the Larkel swimming equipment, Elizabeth and Pat swim by simply covering the stoma with a thumb or finger, and Bob show his great inflatable covered flotation tube. Bob's story about his tube, which he uses to even venture out into the ocean, was featured in the article "DO Go Near The Water!" in the July 2000 issue: WebWhispers Journal - July 2000.
Lary Voices in the Third World
In the U.S., Canada, and most of the rest of the industrialized world, almost all laryngectomees can expect to obtain an artificial larynx or a TEP prosthesis in order to speak after the laryngectomy operation. Certainly the exceptions need to be addressed, but what about the poorest countries of the world? In many parts of the world the average family annual income is less than the retail price of a good artificial larynx; and the cost of TEP prostheses makes them out of the question. In many countries, both of these options would be considered to be incredible luxuries available only to the very rich and influential.
A number of well intentioned people and groups have sought to bring the expensive technologies of the First World into the Third. But you can imagine the problem of someone barely surviving on the equivalent of 20 dollars a month being faced with the necessity of replacing an AL battery. Where would he get one, and how would he pay for it? And this would assume that the individual had electricity to use to charge the battery at night.
The truth is that many people in the Third World who might have become laryngectomees do not live since medical services in their countries are overtaxed and they might not even get their cancers removed. But even when they are lucky enough to obtain the laryngectomy, what are their chances of obtaining any method of speech which involves high cost technologies or even additional surgery?
A number of people have given thought to this problem and sought solutions which did not involve high tech and expensive equipment or additional surgical procedures. Certainly the most obvious answer is to go with the ultimate in no cost/no tech alaryngeal speech...traditional esophageal speech. In esophageal speech air is injected into the upper segment of the esophagus and then expelled to vibrate the uppermost closed part. This tone is then modified by the tongue, lips, teeth and mouth to produce the combinations of sounds we call speech.
The major problem with this is that very few individuals develop esophageal speech spontaneously without instruction or models. There also is the question about the failure rate even when adequate instruction is provided. There is great controversy about these numbers, but the highest success rates for teaching esophageal speech are reported from Japan where they claim that 90% of laryngectomees obtain esophageal speech. In the U.S., however, several studies have suggested that the success rate is closer to 50-60%; with some researchers saying that only about 30-40% of American laryngectomees became barely functional esophageal speakers, and with an even much smaller figure becoming good speakers.
Currently the least expensive artificial larynx is the pneumatic type. These use air from the stoma to vibrate a reed or rubber membrane. That sound is then conveyed to the mouth via a tube into the back of the mouth where it is again modified into the sounds which make up speech. The least expensive of these pneumatics readily available at this time is the Toneaire from Communicative Medical at $69. http://communicativemedical.com/.
But even $69 may be cost prohibitive in many parts of the world.
A number of people have given thought to how an extremely cheap but durable pneumatic AL might be designed and produced. Some of the ideas go back to Zilpha Bosone's article in the classic Self-Help for the Laryngectomee book about a device invented in a VA hospital to help laryngectomees blow their noses and temporality restore the ability to smell. That provided the ideas for the baby bottle nipple to use as the base to put over the stoma, and a tube to go into the mouth.
Some people working on this idea in the past couple of years have been Paul Galioni and an engineering friend of his, and David Blevins. Part of the original story about the invention of the supposedly first practical pneumatic AL by Al St. Germain was that he used the reed from a party noisemaker. Al's idea eventually became the "Tokyo" AL which uses a rubber membrane as the source of the tone. Some thought was given to extremely cheap and readily available sources of thin rubber to use in a vibrating membrane. Rubber balloons were contemplated, as were condoms.
In terms of reeds, we could not find one which looked durable enough or of a small enough diameter. In Myrtle Beach, Tom Lennox, an engineer by training and owner of Luminaud, suggested the tone reed in a pitch pipe used to tune stringed instruments. He had made up a number of pneumatic ALs he sent to Mexico for use by laryngectomees. With the pitch pipe, each tone is created by a separate reed in a metal casing about 5/8s of an inch in diameter. Since you need a deep tone for males and a higher one for females, a set of 5 or 6 pitch pipes could yield as many as four which could be used as the base tone. And contacting the manufacturer of these pitch pipes should be able to produce large quantities of the desired pitches very inexpensively.
Current problems are that the diameter of the vinyl tube has to be too wide at 1/2 inch outside diameter to easily accommodate the diameter of the tone tubes. A small diameter tone pipe is desirable so that less air is needed to convey the sound into the mouth via a more narrow vinyl tube. Another smaller problem is that the larger diameter baby bottle nipple will accommodate a larger stoma size and shape, but requires more breath than the smaller diameter one.
The IAL has taken this on as a project to further develop. It will seek a small feasibility grant to work on the two projects...inexpensive pneumatic AL, and a method of providing basic instruction in esophageal speech. The later idea involves the possible creation of a graphics only presentation on videotape and CD (or DVD) of the basics of esophageal speech. Explanations provided only in English would make it less useful in countries where English is not spoken as the first or second language.
If you have any ideas for those working on either part of the project, contact David at David6511@aol.com.
Quick Tip for AL Users
Jim Lauder has a recommendation for Al users. Those who use an artificial larynx and keep it in their bedroom with a humidifier running should put the AL in a locking plastic bag. Electronic equipment corrodes in high humidity, and Jim says he gets to repair more than his fair share of ALs which have obviously been exposed to too much humidity. What is good for a lary's lungs is not necessarily good for his AL.
Howard Moore Dies
Howard Moore, immediate past IAL Vice President, died on August 23, 2001 after losing a month-long battle with lung cancer. He was 75 years old. Howard planned the Myrtle Beach Annual Meeting, but was too ill to attend.
One distinction aspect of Howard’s work with the IAL is that he served as its “roving ambassador of good will.” As a retired airline employee, he had a free pass to fly, and Howard used it well to function as the IAL International Liaison, as well as to travel to sites within the U.S. He was a regular fixture at laryngectomee conferences and voice institutes from coast to coast and around the world.
He attended conferences from New Zealand, Japan, and China; to Nepal, Brazil, India, Finland and Russia; and most places in between. He probably did more to try and make the IAL truly “international” than any one person before him.
In serving as roving ambassador, Howard continued in the footsteps of fellow Californians, IAL President Edmund Johnson, who died in 1959; and former actor William Gargan, who died in 1979. All three men did extensive traveling to bring the world the message that laryngectomees could lead full lives.
No contribution to his fellow laryngectomees gave Howard more pleasure than serving as producer of the famous laryngectomee first aid film for emergency personnel, Check the Neck. Howard reported that making the project consumed two and a half years of his life from start to finish. The creation of this videotape was a very important project. The previously available videotape to teach emergency medical personnel CPR for laryngectomees had become obsolete by the invention of the TEP prosthesis and hands-free valves. All of this new gear would complicate resuscitation, and EMTs had to learn what to remove (the hands-free valves and HMEs), but what to leave alone (the TEP).
The American Cancer Society told Howard the project was too expensive at an estimated $50,000. But he was not deterred and set about raising the money. 42 letters to charitable foundations yielded just one contribution of $5000. But many contributions from the national and local units of the ACS, Inhealth, the IAL, Dr. Eric Blom, and even a small California-based order of nuns WW member Wayne Baker suggested to him eventually raised the necessary funds. He recruited Clark “Brad” Mason for the project, and Clark served as Executive Producer and appeared in the film as the cab driver who radioed for help. Clark died in 1996, also of lung cancer.
Howard founded the Lost Chord Club of San Mateo County in 1987, and served as its President for six years. He was also Vice President and then President of the California Association of Laryngectomees in the early 1990s. He was proud of having attended all meetings of the IAL beginning at the 1987 AM one in Norfolk, Virginia. He also attended every meeting of the Texas Laryngectomee Association for the last decade.
He had served on the IAL Board of Directors since 1992, was co-chair of the AM meeting in San Francisco, and was elected Vice President when Jack Henslee assumed the post of Executive Director. He served on most of the committees of the IAL. He was especially active in anti-smoking educational efforts and won several awards for his work in this area.
One of Howard’s more charming quirks was his invention of what others came to call “The Howie.” Howies were plaques Howard had made up which he gave to individuals he alone thought worthy of receiving them. They had become a kind of institution at various meetings including the Annual Meeting. Howard also made up a kind of sculpture presentation made up of used prostheses and other lary paraphernalia and gave one each to Drs. Mark Singer and Eric Blom in recognition of their landmark contributions to laryngectomee rehabilitation.
Our heartfelt condolences go out to Howard's wife, Doris LaVonne Moore, the entire Moore family, and Howard’s many friends. All laryngectomees will miss him.
(Thanks to Carla Gress, Jack Keilsohn and Jack Vogle for the photographs)
Still Time to Make Plans to Attend the Pacific Rim Meeting in Hawaii!
There is still plenty of time to make plans to attend the Pacific Rim Regional conference, “2001 - a Speech Odyssey," in Hawaii October 9-12 at the Ilikai Hotel. The conference features a one track program which combines the regular type meeting with an outstanding Voice Institute. The conference is jointly sponsored by the California Association of Laryngectomees, Hawaiian clubs, and others within the region.
Master teacher and SLP Dr. Carla Gress is the Voice Institute Director, and she has assembled a world-class faculty. To give you an idea, here are the profiles of the SLP and MD participants:
Dr. Gress has been one of the most frequent professional contributors to the WW e-mail list, although the recent birth of twins has certainly given her even more to deal with. Dr. Gress is Assistant Professor of Otolaryngology in Head & Neck Surgery and manager of the Voice Center at the University of California at San Francisco. She works with Dr. Mark Singer, MD, co-inventor with Eric Blom of the first widely available TEP voice prosthesis; and tracheoesophageal speech is one area of her expertise. She is an outstanding diagnostician, and gives presentations on head and neck cancer and speech topics in the U.S. and internationally.
Dr. Daniel G. Deschler, M.D. is Assistant Professor of Otolaryngology for Head and Neck Surgery at the Massachusetts Eye and Ear Institute at Harvard University Medical School in Boston. His interests include the treatment of head/neck cancer, microvascular reconstructive surgery, clinical outcomes in head/neck cancer management, and treatment of voice disorders.
Dr. Minnie Graham is Director of the Communicative Disorders Program at San Francisco State University. Since 1981 Dr. Graham has conducted the Alaryngeal Speech Clinic there. She is the author of the Clinician's Guide to Alaryngeal Speech Therapy and has contributed chapters to standard textbooks in the area of laryngectomee rehabilitation.
Merle Irvin is the Head of Speech Pathology at the Naval Medical Center in San Diego. She has been a practicing clinician for over 25 years and has expertise in voice disorders and laryngectomee rehabilitation. Ms. Irvin has been the speech pathologist "in residence" for the New Voice Club of San Diego County since 1974, served on the CAL Executive Committee, and has been a lecturer at IAL and CAL annual meetings, IAL Voice Institutes and SAL conferences.
Dr. Jan S. Lewin is the Director of Section of Speech Pathology and Audiology in the Department of Head and Neck Surgery and Assistant Professor in the Department of Head and Neck Surgery at the M.D. Anderson Cancer Center at the University of Texas in Houston. Jan is a graduate of Michigan State University and has broad experience in the rehabilitation of laryngectomees.
Professor Alison Perry is the head of the School of Human Communication Sciences at LaTrobe University in Melbourne, Australia. It is one of Australia's largest speech pathology institutes. Prior to assuming this position, Dr. Perry was Head of Speech Pathology at Charing Cross Hospital, London, UK; a large teaching hospital. This was where she undertook most of her research work in post-laryngectomy rehabilitation. She and fellow professor Jenni Oates have authored "New Voice" a new CD to enable distance learning students to better understand the mechanism of post-laryngectomy rehabilitation. This has proved to be extremely popular and a useful teaching tool worldwide. Some of her areas of expertise include swallowing and speech outcomes with various larynx preservation surgical techniques.
Finally, Dr. Corina J. van As is the Phonetic Scientist and Speech-Language Pathologist in the Department of Otolaryngology-Head and Neck Surgery at the Netherlands Cancer Institute in Amsterdam. Dr. van As has specialized in rehabilitation of head and neck cancer patients with emphasis on vocal problems, the ability to smell and taste after total laryngectomy, and rehabilitation of speech and swallowing function after major surgical procedures or treatment with chemo-radiation. She has extensive national and international experience in lecturing about post-laryngectomy rehabilitation. Her extensive writings include topics on TEP voice quality, stoma occlusion and impact on speech, imaging of alaryngeal speech, loss of smell and taste following laryngectomy, and others.
Rooms are still available at the headquarters hotel at the reduced rate, and the program is outstanding.
If you would like more information, please contact Wayne Baker, 19 Tilden Circle, San Rafael, CA 94901, by phone at 209 472-0516, or e-mail him at firstname.lastname@example.org.
The Acme Company introduced its entry into the TEP prosthesis market with its new "duckbill" prosthesis. Pictured here trying it out are Elizabeth Finchem, Murray Allan and Pat Sanders. "I can't get the damn thing to work," Murray was quoted as saying. "It's a piece of cake for esophageal speakers," replied Elizabeth, "just ignore it and talk as usual." Pat added, "I think we will add a Helpful Hint on this baby about where Acme can shove it . . . I mean . . . market it."
Welcome New Members
We welcome the 24 new members who joined us in August:
Cynthia & Edward Adleman
Carolyn Baylor - SLP
Carole Bellamy - Caregiver
King's Lynn, Norfolk, UK
Rochelle Park, NJ
Los Altos Hills, CA
Shannon Kemp - SLP
Cynthia Pace - SLP
Glouster, Ontario, Canada
Addie L. Shaw
El Lago, MD
Exeter, Devon, UK