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Internet Laryngectomee Support
About 300 people attended the 2003 International Association of Laryngectomees Annual Meeting and Voice Institute in Atlanta, Georgia in June. The Meeting was dedicated to the memory of the late Jane Del Vecchio and sponsored by the club she established, the Greater Atlanta Voice Masters. Jane's son Robert McClure and his wife were honored guests. Atlanta club President David Kilgo and his planning committee, along with IAL Vice President Bob Mehrman, put together a great program.
The Voice Institute, which began on Tuesday, was among the largest groups in many years at 75 participants including 17 speech/language pathologists, 9 laryngectomee trainees, 33 VIPs (laryngectomees), 16 speech graduate students, plus faculty. According to Dr. Ed Stone, Director of the Voice Institute, the hands-on clinic held at Emory University was the best ever.
The Annual Meeting kicked off with the opening ceremonies, which featured a Marine Corps color guard, and the keynote speech by Dr. Robert Hillman. Dr. Hillman gave a slide/talk on the hands-free electronic larynx on which he and his colleagues at Harvard University are working. The hands-free electronic artificial larynx uses the patient's muscles and nerves to turn on the AL sound source which is attached to the neck.
The tone can then be modified by the patient's muscles and nerves to produce prosidy, or variability in the pitch as well as loudness. The tone from the mouth is picked up by a microphone, and modulated before it comes out of a speaker which is attached to the waist. A more comprehensive article on the device will appear later, but it is important to know that the device is not now ready for purchase, and, at this time, it can only be used by a new laryngectomee since the work to preserve and relocate muscles and nerves must be done at the time of the laryngectomy surgery. There is also additional research work which needs to be done on making some of the parts smaller before it will be available for purchase.
Later on Thursday morning Drs. Eugene Myers and Amy Chen presented sessions on managing head and neck cancer and on what can be learned from research, and Angela Pool gave a talk on hearing loss and contemporary solutions. A workshop on the TruTone electronic artificial larynx was provided, a medical panel was available for questions from the audience, a choice was offered from among seven sessions on improving each of the three major methods of alaryngeal speech, and the traditional sing-a-long rounded out the program for Thursday.
The Friday program began with a presentation on hyperbaric oxygen
treatments by Judy Bennett, RN (see related article,
http://www.webwhispers.org/news/feb2001.htm), a repeat of
an enthusiastically received session from last year on learning to smell again
by Dr. Corina van As, and sessions on tobacco education and an InHealth product
workshop rounded out the morning program. The afternoon featured sessions on
surfing the Internet conducted by our own Dutch Helms and Pat Sanders, a session
on public speaking, a workshop by Servox, a panel on rehabilitation of
laryngectomees around the world, another round of speech therapy in seven
groups, and a presentation by Dr. Jim Shanks on esophageal speech.
The annual WebWhispers banquet was held on Friday night with the reception hosted by Bruce Medical. The food was, as always, outstanding. Thanks to Libby Fitzgerald and all of those who helped with the planning of the banquet.
The winner of the prestigious Casey/Cooper Award went to Mary Jane Renner, past president of the IAL and pillar of the laryngectomee community. Awards also went to Casey/Cooper runner-ups Herb Simon, Judy Ramboldt and David Blevins; Gary Miner received the "Jarhead" award; Syd Gartenberg and Kent Smith received "Jumping In" awards for quickly joining in and making valuable contributions to the listserve; Richard Najarian and Bruce Medical received a certificate of appreciation for sponsoring the pre-WW dinner cocktail reception; Lorrance Lancaster received the Long Distance Lary Award for having come 9700 miles to the Meeting from Australia; and June Allan received a "Spotlight" award for her quiet behind the scenes support of WW President Murray Allan.
The Saturday sessions began with a panel on the Dynamics of a Thriving Club; Managing Grief, Depression and Anger; a panel from Poland who discussed rehabilitation in that country where traditional esophageal speech still prevails; and a tea and fashion show for ladies was an option. The Delegate assembly convened in the afternoon and the Delegates elected new Board of Directors members Jesse Hart and Sally North of Texas, Roger Jordan of Mississippi, and Tina Long of Georgia. The traditional Fun Show written and directed by Ron Langseth and the Raffle concluded the afternoon activities.
Cocktails and the annual Banquet and Dance topped off the evening, and concluded the Annual Meeting and Voice Institute. Click your mouse on the block below to view three pages of photo collages from Atlanta. They combine 126 individual photographs and try to convey a sense of the people and events which constitute what an IAL Annual Meeting is all about.
Many are already beginning to make plans for the 2004 Annual Meeting and Voice Institute at Disneyland in Anaheim, California. The Annual Meeting runs from July 8-10th, with the Voice Institute beginning three days earlier on July 5th. Start planning now to join us.
Occupational links to larynx cancer?
Are their occupations which may put individuals at greater risk for developing larynx cancer? The April issue of Cancer Causes Control reported the results of research carried out in four European counties. The results were positive for a number of occupations. The study included over a thousand individuals who had contracted larynx and hypopharynx cancer and compared them to over 2000 "controls," or individuals from a variety of occupations who had not developed cancer.
While controlling for non-occupational risk factors such as smoking, alcohol consumption and diet, significantly higher levels of cancer were found in individuals exposed to solvents. A positive association between exposure to formaldehyde and laryngeal cancer was also suggested by the study. No association was found for exposure to arsenic and compounds containing it, chromium and compounds, and polycyclic aromatic hydrocarbons, although a link to exposure to asbestos was indicated.
Occupations which showed elevated risk for developing cancer of the larynx and hypopharynx included some categories of construction workers, potters, butchers, barbers, railroad transportation workers, reinforced concrete workers, woodworking machine operators, shipbuilding and hotel employees, shoe finishers, loggers and some groups of metal workers. Unlike previous studies, no link was shown for drivers, mechanics, welders, machinists, or painters. In a number of cases, the length of time at a given occupation was linked to the development of cancer.
Research which makes these connections is not considered definite proof that the identified substances caused the cancer but is evidence which suggests further research on each of the substances. Readers may recall that an article in last month's WWJ concluded that despite all of the suspicions, asbestos had still not been shown to definitely cause larynx cancer (see http://www.webwhispers.org/news/jul2003.htm).
Dealing with an emergency prosthesis leak
It's the weekend and all of the sudden you develop a leak in your prosthesis. You either wear the indwelling which your clinician changes, or the kind you change yourself, but you do not have a spare. You have done the standard things including thoroughly cleaning it with a brush and flushing water through it. But the leak continues. Should you call your ENT or SLP?
We have been told that many ENTs and SLPs do not consider a leaking prosthesis to constitute an emergency and they may not be reachable in any case. But aside from an expensive and time-consuming trip to your emergency room to have the on-call ENT deal with it, are there any other alternatives?
There are a couple of things the laryngectomee can do to deal with this situation themselves, although doing so requires preplanning. One option is to have a valved plug insert on hand. All but the shortest prostheses can use the valved type. The shortest ones get the non-valved type available from the same source, InHealth. The valved inserts not only stop liquids from dripping down into your trachea, but also allow you to continue to speak. The one pictured costs $42. It is a prescription item, so see your clinician.
Still another alternative is to have on hand a red rubber catheter. The #14 catheter fits the 20 fr prosthesis. The 16 fr prosthesis can be plugged with a 10 or 12 fr catheter. You want the catheter to effectively plug the prosthesis, but not be a tight fit in order to avoid possibly pulling the prosthesis out when you remove it. Cut the catheter off at 11 or 12 inches and tie a knot in the end. If you develop a leak, just use the catheter as a plug until you see your clinician. The disadvantage is that you cannot speak while the plug is in place. However, you can remove it to speak and replace it when you swallow. You can get a red rubber catheter from most medical supply stores, or via the Internet. The price should be from $1-$3.
The stronger laryngectomee clubs
Sessions at previous Annual Meetings have sought to identify some common characteristics of the strongest laryngectomee support clubs. And an article on this topic appeared in September, 2002 issue of the IAL News. It listed and described seven common characteristics of the strongest clubs: the strongest clubs (1) make themselves know to every hospital, ACS unit, ENT and SLP in their geographic area, and renew the contact at least annually (2) identify EVERY laryngectomee-to-be and new lary in their areas through the contacts identified above. (3) stay in touch with EVERY laryngectomee within their geographic area through a newsletter which, preferably, goes beyond printing the minutes of the previous meeting and making announcements and includes articles of interest to laryngectomees who do not regularly attend meetings (4) meet no less than once per month (5) train future leaders (6) carefully screen and train hospital visitors (7) maintain a loaner closet.
A session in Atlanta, "Dynamics of a Thriving Club," went beyond these basics and discussed some unique programs which other clubs may wish to consider. Some of these ideas include clubs establishing an Internet website so that individuals searching for local support can find the club. To assist in this, the IAL will provide a website for just $20 per year (two pages), and include contact and other information.
Participants also suggested a twice per year personal mailout to local
medical personnel, dedicating one newsletter issue each year to list new
laryngectomees and commending MDs and SLPs who refer larys to the club,
maintaining an e-mail list of club members, offering speech classes from a local
SLP, connecting with the ACS office, obtaining speakers from among the vendors,
EMS personnel, and local SLPs. The importance of social events was emphasized
as a draw, and scheduling the meetings so that working larys can attend was
mentioned by several clubs. Community service was also stressed such as school
visits, providing printed pre-operation materials, and volunteering for
Relay-for-Life and other events which give some visibility to laryngectomees and
your club. At least one club was successful in obtaining tobacco settlement
money, and another has gold and silver sponsors for raising money. The money
pays for some social events held in restaurants with the food paid for. And a
final suggestion was to include hearing aids in the loaner closet.
Welcome New Members
Stephanie Sulc Farrell -
Pismo Beach, CA
Harrow, Middlesex, UK
Terre Haute, IN
Christa Likes - SLP
Surfside Beach, SC
Barbara Messing - SLP
Bridgett Platz - SLP
Lake Forest, CA
Villa Park, IL
North Highlands, CA
Tammy Wigginton - SLP