Internet Laryngectomee Support
Two WW Members Carry
Not one, but two WebWhispers members were among the 11,500 Americans who carried the Olympic Torch for part of it's 13,000 mile journey through 46 States from Atlanta to Salt Lake City for the 2002 Winter Games. Mike Boone and Bob Herbst were nominated by family and friends to carry the torch, and they were accepted.
Mike Boone, 52, is from Louisville, Kentucky. He became a laryngectomee in 1998 after unsuccessful radiation and other treatments including "Nissen fundoplication," which is a surgical procedure designed to address problems with chronic GERD (gastro-esophageal reflux disease).
As so many of us do, Mike experienced problems in accepting becoming a laryngectomee. As he puts it,
"The worst thing that occurred after the surgery was getting over my bruised ego, of course. That's the one area where one has to learn how to adjust. I am sure everyone does that in a different way. The mechanics of voice restoration is a simple science, but learning to continue to live instead of waiting to die is the real challenge. Fortunately, I created a bond with my first speech pathologist, Leigh Ann Weidmar, and she helped me not only with the initial EL training but also with the mental issues as well."
Mike subsequently had TEP (TracheoEsophageal Puncture) surgery. Unfortunately, he was among those who experience problems in getting TEP voice, but saw Drs. Eric Blom and Ron Hamaker in Indianapolis, and Botox injections solved his problem.
In terms of cause, Mike may come close to setting a record for risk factors. As he put it,
"I qualified for nearly all the risk factors associated with this type of cancer:
1. Exposure to Agent Orange in Vietnam in 1970 and again in 1971.
3. Excessive drinking - I am a recovering alcoholic of 13 years now
4. Stomach acid reflux
5. I also have a genetic link having had an aunt who had a benign tumor on one vocal chord that resulted in permanent hoarseness, and a first cousin who also had a benign tumor on one vocal chord.
6. Exposure to chlordane, a chemical once used for pest control which was banned because it was identified as a carcinogen."
Mike carried the torch on December 16th for part of its journal through Louisville. He described it as a "big thrill." When he was asked by the press for whom he might be carrying the torch, he responded by saying "recovering alcoholics and cancer patients. Just seems to fit since I qualify for both!"
Mike can be contacted at MikeBR12@aol.com
Bob Herbst, 51, is from New Haven, Connecticut, and he was the first to carry the torch on December 26th in the New Haven portion of the relay. Bob, who is vice president of Integrated Industrial Systems of Yalesville, Connecticut, became a laryngectomee in 1998. In addition to losing his larynx, he also had lymph nodes and part of his thyroid gland removed.
All Olympic torch bearers are nominated on the basis of 50-100 word essays describing the way in which the candidate had inspired the writer. Bob was nominated by both his wife and coworker Ron LeClair.
Bob speaks using traditional esophageal speech which he learned at Southern Connecticut State University. Bob and wife Lesley, who is a nurse, sit as members of the advisory board of the Speech-Language-Hearing Clinic at SCSU.
About the run Bob said,
"I feel glad to be alive. I felt good for all the people in the hospitals. I told them I was going to run today. I was running for them, but I was mostly running for cancer patients everywhere."
Bob is a volunteer at a number of area hospitals including Massachusetts Eye and Ear, Massachusetts General, and Yale New Haven.
Bob began running after his surgery and he continues to run in 5K road races. He lives on the water, owns a cottage on Cape Cod, and, prior to becoming a laryngectomee, he loved snorkeling and swimming. Many will remember his recommendation in an earlier issue of the WWJ for a flotation device he uses to go out in the ocean (http://webwhispers.org/news/jul2000.htm) and his demonstration of it at the Myrtle Beach IAL Annual Meeting last year.
Bob can be contacted at email@example.com
Marie Sherwood Receives First "Candle of Hope" Award
WebWhispers member Marie Sherwood of Hughesville, Pennsylvania, is the first recipient of the WebWhisper's "Candle of Hope" Award. Marie inspired its creation.
According to the ancient Chinese proverb, "It is better to light one candle than to curse the darkness," and Marie's candle shines brightly for all to see. The award reads, "For her exceptional courage and positive attitude; for being a constant inspiration to us all; for exemplifying the joy and appreciation of life; for recognizing and appreciating the beauty of everyday things as she faces her difficulties without fear." Marie is terminally ill with a recurrence of cancer, but she continues to inspire us with her capacity to accept what must be accepted and to wring out all of beauty, joy and love she finds in each day.
No stranger to troubles and tragedy, she escaped an abusive marriage only to
have her second husband suffer severe brain injuries in a fall from a ladder. Having no insurance, she exchanged a part time job for a full time one at a
slaughter house in order to make ends meet. Extreme fatigue and weight loss lead
her to search for a cause
which ultimately resulted in a diagnosis of a T4
cancer. She had her larynx removed in 1999. During the surgery they found that
the cancer had spread to her spinal cord, and subsequently it spread to her
Marie's response to hearing that she received the award was typically both modest and positive:
"Thank you so much for the Certificate although I feel I'm just like everyone else in doing what we can to fight this terrible disease. Again, I do sincerely thank you from my heart. I do love God, life and people. I hope all of you try and have a sunny day. Your friend, Marie : )"
Marie can be reached at Mariah95@aol.com
Agent Orange Lawsuit Reopened
In 1984 on the day before a trial was scheduled to open, a dozen chemical companies including Dow Chemical Company settled a lawsuit with a group of American, Australian, and New Zealander veterans. The companies agreed to pay 180 million dollars to veterans and their survivors exposed to Agent Orange in Viet Nam who had become ill or died. A part of the money was to be put aside for veterans who became ill in subsequent years through 1994. But it was all supposed to end in 1994.
But the U.S. Court of Appeals for the 2nd Circuit has overturned the settlement and ruled in favor of two veterans who became ill after 1994. Now additional veterans who became ill after 1994 are expected to sue, although the chemical companies may decide not to settle with these plaintiffs and the vets will have to prove that their illnesses were caused by Agent Orange and that the companies rather than the government which ordered and used the chemical is responsible.
Those to whom it applies can join the lawsuit by filling out a form at this Internet address:
http://www.soft-vision.net/ao_vets/survey or call 1-888-405-5297; fax 972-243-2666; or write Smoger and Associates, 13250 Branch View Lane, Dallas, TX 75234 or 3175 Monterey Blvd., Oakland, CA 94602.
Since 1998 the Veterans Administration has been more supportive in dealing with Viet Nam veterans who were exposed to Agent Orange. Laryngectomees and others who served in Viet Nam and who have suffered disabling diseases should contact their local VA offices.
Is there such a thing as being too clean? Under some circumstances it turns out that there is.
According to the Centers for Disease Control, hand washing does play an important role in preventing infections. Indeed, research shows that hand washing is among the most effective measures people can take for the prevention of disease. For the average person, washing the hands with plain soap removes infectious agents found on the hands particularly transmitted from fecal to mouth or respiratory sources. However, research also indicates that the general public does not wash hands frequently enough during the day, or for long enough.
A related issue is the use of antibacterial soaps. Although superior to plain soap in the short term, their habitual use is believed to produce antiseptic resistant strains of bacteria. This has been noted particularly in Japan and Britain where the widespread use of soaps and other products containing chemicals such as triclosan (which has a similar molecular structure to dioxin, PCBs, and Agent Orange) was common.
Ironically, soaps and detergents have been described as the most damaging substances routinely applied to the skin. One of the occupational hazards for healthcare workers who wash their hands frequently is what is called "irritant contact dermatitis." One study from Finland demonstrated that frequent washing of hands by healthcare workers created substantial damage to the hands such that it posed a greater risk to themselves and the patients than if they washed less often. However, moisturizers have been shown to be beneficial for skin health as well as reducing the spread of bacteria regardless of whether the product contains an antibacterial agent or not.
In terms of recommendations for the general public, more frequent bathing has not been shown to make a significant difference. Studies have shown that bacteria counts are as high after bathing as before, although showering and bathing have stress-relieving and other benefits. Other than surgical personnel, showering or bathing with antimicrobial products is not recommended.
At this point the CDC is reluctant to make strong general recommendations to the public because of the need for a balance between not enough and too much hand washing and bathing. However, most people would benefit from a health standpoint by more frequent and thorough washing of the hands during the day with plain soap, and avoiding the habitual use of antibacterial soaps and hand creams.
The new foam filter used above is from InHealth. Matt recommends the use
of a leather punch rather than the paper punch shown since it can make holes of
various sizes. They are available from hobby stores.
Note: Neither ATOS Medical nor InHealth Technologies endorse the use of their
products as described above. Using the products as described should be done at
your own risk.
Matt Bressler can be contacted at firstname.lastname@example.org
Indian Head, MD
|Janet Alexander - SLP
Askrigg, N. Yorkshire, UK
Putnam Valley, NY
|John R. Davis
|Janet M. Folmar - SLP
Dunedin, New Zealand
Silver Creek, NY
|Jaime Greenwood - SLP
|Billy & Fay Helms
Wake Forest, NC
Brighstone, Isle of Wight, UK
|Tim & Nancy Kadow
| Mary-Anne Kaiser - Caregiver
Chilliwack, BC, Canada
San Jose, CA
|Lanny Keithley/Shelby Sampson
Moss Beach, CA
Sioux Falls, SD
W. Burleigh, Queensland, Australia
Shanklin, Isle of Wight, UK
Phulenagar, Pune, India