Internet Laryngectomee Support
March 2002
Two WW Members Carry
Olympic Torch
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.
2. Smoking
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 bobh@i2sworld.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.
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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
lungs.
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.
Too Clean?
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.
My Way
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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
brezz132@cs.com
Lary Laughs
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| Parran Abell Indian Head, MD PAbell6969@aol.com |
Janet Alexander - SLP Martinez, CA alexander.janet_l@martinez.med.va.gov |
Kevin Benbow Askrigg, N. Yorkshire, UK samuelcorns@aol.com |
| Ron Comeaux Birmingham, AL roneaux@bellsouth.net |
Dennis D'Aira Putnam Valley, NY dkd137@optonline.net |
John R. Davis Sulphur, OK carolnkit@yahoo.com |
| Janet M. Folmar - SLP Austin, TX MAXNBIGBOY@aol.com |
Robin Forgie Dunedin, New Zealand pmforgie@paradise.net.nz |
Frank Gerace Silver Creek, NY frank@finalcom.net |
| Helen Grathwohl Chesapeake, VA AGrath3004@aol.com |
Jaime Greenwood - SLP Richmond,VA Jaimebg77@aol.com |
Billy & Fay Helms Wake Forest, NC Xteam43@cs.com |
| Greg Irving Brighstone, Isle of Wight, UK calibration@strainstall.co.uk |
Tim & Nancy Kadow Kankakee, IL upholstermom@juno.com |
Mary-Anne Kaiser - Caregiver Chilliwack, BC, Canada kaiser99@telus.net |
| Erika Kavanagh San Jose, CA omakav@earthlink.net |
Lanny Keithley/Shelby Sampson Moss Beach, CA lkeithley@longs.com/shelbyaya@yahoo.com |
Gene Kennell Sioux Falls, SD DKennell@msn.com |
| Gared Kirkpatrick Mobile, AL GaredK@cs.com |
Ernest Martin W. Burleigh, Queensland, Australia Martynee10522546@aol.com |
Donald McDonald Placida, FL JMcD925@aol.com |
| Tricia Perkins Fairbanks, AK goldkingkids3@yahoo.com |
Nancy Reynolds Winston-Salem, NC nreynolds@triad.rr.com |
George Roberts Jupiter, FL george616@att.net |
| Ray Rogers Shanklin, Isle of Wight, UK rayjill@hotmail.com |
Shekhar Sarkar Phulenagar, Pune, India shake_her_sarkar@rediffmail.com |
Ric Shannon Pensacola, FL RicandRuth@aol.com |
| Terry Trepasso Ava, MO trepasso@getgoin.net |
