Internet Laryngectomee Support
August 2001

"Did you hear him talk?"
By Joe Kelly

    Loosing my voice was the biggest shock in my life as it was for all of us.  But looking back the brightest event in that dismal period was the visit of a fellow lary with a hands-free valve.  He was sent by my surgeon to try and make me see that all was not lost.  Being a salesman and feeling lost was something I will never forget. 

    When I opened the door and he said “hello,” I knew there and then I would be OK.  I cannot stress enough how important it is for newbies to see and hear someone talking.  My wife lit up like a Christmas tree and all she could say was, “Did you hear him talk?”  It was much more than either of us expected. 

    Please, if you get a chance to visit someone who has recently had the surgery, GO!  I have on two occasions and it was as happy for me as it was for them.  The last lady I went to see was in the doctor’s office.  My doc set it up because the lady was so down in the dumps and would not even try to talk.  She carried a notepad around with her. 

    But when she saw me talking all she could do was hug me and cry.  In fact we both stood there like dummies sobbing.  Once we know there is a light at the end of the tunnel, our outlook on life changes for the better.  This lady's did and it had an effect on me as well.  Those were sad days and any light at all meant so much. 

    Check with your doctors and see if there is anyone you could help get a happier start.  Try it, you'll like it.  Don't forget it gets better every day.  Just hang in there. 

    Joe can be reached at jkwlly6060@sbcglobal.net

----------

   
“There is a job to be done for those who need to be guided and encouraged to make the effort to speak again and who must be sustained through the frustration of those first efforts.  These are your jobs.  This is your service.  Service, you know, has been called the rent we pay for our room on earth.”  (Dr. Charles Cameron, MD, at the founding meeting of the IAL in 1952.)

----------

In the beginning...the IAL

    If the International Association of Laryngectomees had a "founding father" he was Dr. Warren Gardner of the Cleveland (Ohio) Hearing and Speech Clinic.  Because of his personal interest and work with laryngectomees, and based in part on encouragement he received from some in attendance at the 1951 American Speech and Hearing Association (ASHA) convention, he organized the First Institute on Voice Pathology.  It was held at Western Reserve University in Cleveland on August 1-2, 1952. 

     There were already a number of laryngectomee support groups scattered around the country primarily in the larger cities such as Boston, Chicago, Cleveland, Detroit and New York.  And representatives were contacted from each club which were known and invited to attend.  200 people attended the conference.

    The meeting was in two parts, the First Institute on Voice Pathology, and the First International Meeting of Laryngectomized Persons.  The sponsors were the Cleveland Hearing and Speech Center, The American Cancer Society, the Office of Vocational Rehabilitation of the federal government, The National Cancer Institute, the Lost Chord Club of Cleveland, the Cleveland Academy of Medicine (local surgeons), and the School of Medicine and Speech Department of Western Reserve University.


     The IAL was formed, a constitution was written and adopted, and the first officers elected: Willard White of the Anamilo Club of N.Y. was elected President; Faber Drukenbrod of the Cleveland Lost Chord Club became Vice President; Granville Allison of the Lost Chord Club of Memphis, TN, became Treasurer; and Mrs. Paul Doehler of the Cured Cancer Club of Boston, MA, became Secretary.  Faber Drukenbrod was a lawyer and laryngectomee, and he drafted the constitution. 

    The stated purpose of the organization was: (1) to encourage and maintain an exchange of information, ideas, and methods for the training and teaching of esophageal speech (2) publish and disseminate rehabilitation information for its members and others who are victims of cancer of the larynx (emphasis in the original) (3) cooperate with the American Cancer Society, its affiliates and other groups to combat cancer in all of its forms (4) hold an annual meeting and regional meetings or others as determined.  At the meeting Dr. Clarence Cameron, President of the ACS, made the often quoted statement, “Service is the rent we pay for our room on earth.”

    The IAL was financially supported by the ACS from the beginning.  Within the next two years other clubs which joined were: Lost Chord Club of Southern California, Los Angeles, CA; Lost Chord Club of Northern California, San Francisco; and the New Voice Club of Milwaukee, Milwaukee, WI.  Soon 13 Clubs formed the nucleus of the fledgling IAL. 

    The IAL was called "international" from the beginning, and it was sponsored from its inception by the American Cancer Society.  The Annual Meeting in Myrtle Beach is the 50th anniversary meeting.

What is It?



    The photo above is of a piece of equipment used by laryngectomees several decades ago.  Can you guess what it did?  A hint is provided down the page, and the answer at the end.

Writing made Easy

    What should be in every local laryngectomee support club's loaner closet? 

    Certainly among these items should be several copies of the laminated Lary Needs Chart (available free from Inhealth).  Designed by Pat Sanders, this is for use primarily while the new lary is still in the hospital to facilitate communication with the medical staff.  The patient need only point to a number of requests on the chart such as "pain" or "water."  The local support group might also consider obtaining a quantity of inexpensive dry erase markers to provide the hospitalized laryngectomee to write out other messages on the chart.

     For more extended messages an excellent alternative to paper and pencil is the "Magnadoodle" (or other brands such as RoseArt).  These are plastic writing tablets sold in toy stores which work, as the name implies, by the use of a magnet tipped pen.  As you write on the translucent surface some iron filings are drawn to the surface by the magnet in the pen to form the letters.  You "erase" what you have written by pulling the handle across at the bottom.  It certainly preserves paper and is easy to master.  In addition to use during the immediate postoperative period, it is also an excellent and fairly inexpensive item for use by those who cannot learn any of the methods of alaryngeal speech or who are having temporary voice problems.

    Unfortunately most of the newer designs are obviously intended for children which makes them a little more conspicuous than some would prefer if they need to use them in public.  An older design is also shown, and your club may be able to pick one up at a yard sale, or perhaps you have one your child or grandchild used. 

    New ones come in various sizes.  We recommend the larger ones for hospital and post-op use since you can write large enough to converse with someone across the room.  The dimension of the writing area is shown in the photo of the older model.  The smallest ones designed for travel do not allow you to write enough legibly without having to frequently erase. 

    The large size runs about $15.00 and is carried by Toys R Us and other toy and department stores such as Walmart.  The smaller travel size ones cost from $8.00-$10.00.

    The "Laryngectomy Needs Chart" can be obtained free from Inhealth by calling their toll-free number, 800-477-5969, or write them an e-mail requesting some to:

    richcrum@insightbb.com or jseder@inhealth.com  

What is It? - Hint

    Hint: the device pictured above is a voice prosthesis.  But how did it work?  The answer is below.

Election of Officers

    The election of our officers will soon be upon us.  To be eligible to run for any of the officer positions you need to be a voting member of WebWhispers.  If you are uncertain as to whether you are currently paid up as a member, the names of paid members are in blue at this address:

    WebWhispers Membership

    The four WebWhispers offices are President, Vice President for Web Information, Vice President for Member Services, and Vice President for Finance and Administration.  All four current officers, Murray Allan, Pat Sanders, Bob Hodge and Terry Duga, have all announced that they will stand for reelection.  The procedures for nominating someone or yourself were spelled out in an e-mail sent on July 26 by Dutch Helms.  If you would like to review it you can find it in our message archives at the bottom of the following link (if you do not know it you can get the current password from Dutch):

    WebWhispers Netiquette

I'll Drink to That

    Alcohol has been linked to an increased risk of various health problems, including some cancers.  These include cancers of the esophagus, mouth, larynx, breast, and colon. 

    However, a recent medical study in Nebraska looked at whether the type of alcohol consumed influenced the increased risk of death from heart disease or cancer.  Specifically, the researchers explored the differing effects of beer, red wine, or mixed drinks on heart disease and cancer.  They found that wine carried the lowest cancer risk.  In fact, wine drinkers had a lower risk of cancer death than nondrinkers.  This association was not found for adults who drank beer or mixed drinks. 

    As for wine, there's not much of a difference if a person is a light or moderate drinker.  Compared to nondrinkers, researchers found that consumption of any amount of wine resulted in a lower risk of death from heart disease and cancer.  Researchers have speculated that wine contains flavonoids and antioxidants that may help fight heart disease and reduce risk.  "For cancer, especially, studies show that certain chemical substances in grapes may hinder the initiation, promotion, and progression of cancer.

    If you don't drink alcohol, experts don't suggest that you start drinking for health reasons.  If you do drink, doctors generally recommend no more than two drinks per day for men, and no more than one drink per day for women." 

    As we have learned, cancer of the larynx is linked to alcohol consumption as well as to tobacco use, and continuing to expose the mouth, esophagus and digestive tract to significant amounts of alcohol increases the risk of a cancer recurrence.

Correction - "Just" 396,741 Die Each Year

    It has been reported by the Surgeon General and the Center for Disease Control that 400,000 Americans die prematurely from tobacco caused disease each year.  The tobacco industry complained that the 400,000 estimate did not take into account the lower educational and socioeconomic status of modern-day smokers.  The implication was that poorer and uneducated people tend to also make poor choices about diet which might account for some of the tobacco-attributed deaths. 

    Harvard University researchers took up the challenge and took the data  used to come up with the 400,000 figure, but adjusted it for poverty and educational level.  There results were reported in the Journal of the American Medical Association.  It turns out that controlling for these factors accounts for less than a one percent difference.  By controlling for these factors estimated deaths went from 401,109 to 396,741.

    Tobacco-related illnesses which are part of the calculations in estimating the consequences of smoking include cancers of the lung, oropharynx, larynx, esophagus, pancreas, kidney, bladder, and cervix; ischemic heart disease, arterial disease, and other heart conditions; stroke; chronic obstructive pulmonary disease (COPD); and other respiratory conditions.

Benefits Checkup

    Getting all you have coming as a retiree, veteran, or disabled person?  Check it out by visiting the National Council on Aging website.  Supply some basic information (but not your name or other personal information), and it checks a number of benefit programs. Try it at:

    http://www.benefitscheckup.com 

CyberKnife - New Tool for Cancer Treatment

    A newer x-ray machine has been invented which should increase the effectiveness of using radiation to destroy cancers of the larynx (as well as cancers in other sites).  The device is called the CyberKnife since it is viewed as a tool which can, in many cases, be used as an alternative to traditional cutting surgery under general anesthesia. 

    The primary difference between this new device and older technologies is its ability to apply an optimally sized dose of radiation, and from an almost infinite number of angles so that damage to healthy tissues is significantly minimized.  Because it uses a different aiming method, it is not necessary for the patient to receive the tiny tattoos which were used to precisely aim the older machines. 

    As the illustration shows, the working part of the machine rotates around the patient and the only common meeting ground for the beams is the cancer itself.  All other tissues are receiving a minimum of radiation and there should be none of the side effects associated with traditional radiation therapy such as "sunburn," impaired saliva production, reduced taste sensation, etc. 

    Another major advantage is that usually only one or two treatments are required to obtain the desired result rather than the several dozen more typical of traditional radiation therapy.  Additionally, the entire procedure can be accomplished in less than three consecutive days, although the duration of the procedure is presently longer than other methods.  Like traditional radiation, CyberKnife is also used on an outpatient basis where the patient comes in for the procedure and then can return home afterwards.

    CyberKnife, which was developed by John Adler, MD, has been approved by the FDA for use in head and neck cancers, and trials are underway to use it with some types of lung cancers.  This approval is expected by fall. 

    During the procedure a tiny gold pellet is inserted into the tumor so that the device can stay tracked on to the cancer.  The radiation head then moves around the patient and a number of angles are used.  The procedure is tracked by computer so even a movement by the patient will redirect the beam back on to the tumor.  Older devices were set to shut down if the patient moved.

    So how long before this technology is widely available?  Unfortunately, at the present time the machines are only being tested and are available at the five sites listed below.

Stanford University Medical Center 
Stanford, California
(650) 723-5573

Newport CyberKnife Center 
Newport Beach, California
(800) 605-5170, (949) 760-3025 

Shadyside Hospital, University of Pittsburgh 
Pittsburgh, Pennsylvania
(412) 623-2121

University of Texas-Southwestern Medical Center 
Dallas, Texas
(214) 648-7684

Cleveland Clinic Foundation 
Cleveland, Ohio
(216) 444-5576

    You can get additional information about the CyberKnife including some simple animations at this site:

    http://www.accuray.com 


What is It? - Answer


 
    Answer: pictured above is an early prosthesis, the LaBarge VoiceBak prosthesis.  It worked by directing air from the stoma into a large fistula or hole made in the side of the neck.  The photograph ran in the April 1973 issue of the IAL News.  The device was invented by Stanley Taub, MD.  Leaks, infection, and the proximity of the fistula and apparatus to the carotid artery caused enough "accidents" that the design was abandoned.  I am sure those who use the TEP are relieved that a better design came along. 


Lary Laughs

by Judy Greiwe
(jgreiwe@iquest.net


Welcome New Members 

    We welcome the 21 new members who joined us in July:

David Aloisi
Hermosa Beach, CA
davidaloisi@earthlink.net
Andy Anderson
Franklin, TN
tomyen@webtv.net
Howard Bentzinger
San Luis Obispo, CA
hlbentz@charter.net
Tom Dailey
Suisun, CA
tdaileydm@aol.com
Mary "Libby" Davis
Brandon, MS
msbibby@aol.com
Scott Dedrick
Fulham, South Australia
 AGradeBrickPaving@bigpond.com 
Kitty Harrington
 Willow Beach, Ont., Canada 
kittycat237@home.com 
Patsy Haskell - Vendor
San Antonio, TX
alexspaids@juno.com
Scot Haskell - Vendor
Austin, TX 
sales@alexspeechaids.com
Richard Holl, Sr.
Glencoe, AL
RHollSr@cs.com 
 Arlene Holliday - Caregiver 
Naples, FL
lenahol@aol.com
Sarah Linton - Student SLP
WSU-Spokane, WA
sj_linton@yahoo.com
Bill McKee
Lowell, MA
wearlmckee@mediaone.net
Louis Meyers
Ball Ground, GA
LCMEY165@aol.com 
John & Kim Modenbach
Raleigh, NC
modenbach@mindspring.com
Bob & Claire Mohan
Chalfont, PA
mohan255@aol.com
Tom Owens
St. Petersburg, FL
Gail1117@aol.com
Mae Schuler
Mountain Top, PA
brookes@epix.net 
Harold Underwood
Robertsville, MO
JUnderw453@aol.com
Patrica A. Vejar
Thousand Oaks, CA
PRVNTO@aol.com 
Patrica R. Vejar - Caregiver
Thousand Oaks, CA
PRVNTO@aol.com



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 § 170.

Return to Home Page Return to Journal Page