Internet Laryngectomee Support
December 2000

50th Anniversary IAL Convention Hotel and Dates Set

     Mark your calendars! The 50th anniversary International Association of Laryngectomees Annual Meeting and Voice Institute will be held August 14-18th (for the VI), and 16-18th (for the AM), in Myrtle Beach, South Carolina. 

    The headquarters hotel for most meeting sessions will be the Ocean Dunes Hotel.  Additional guests will be housed next door at the Sand Dunes Resort.  Mid August is the heart of the summer vacation season, but reasonable room rates have been secured at both hotels for $82/night plus tax.  Room upgrades are available for $95/night.  Both hotels are directly on the beach. 

    You can obtain additional information about the hotels at:      http://sandsresorts.com 

    The early birds among us might even want to call and make reservations soon.  You can do so by calling toll-free (800) 599-9872. 

    Early reservations are recommended.  Our rates are guaranteed through July 15th, after which regular seasonal rates apply on a space available basis. 

    Our organization is planning several wonderful events including our WebWhispers Reception and Dinner, so plan on joining with us. 

    There will be additional information available on the IAL website including details about the Annual Meeting, Voice Institute (including scholarship availability), etc., as soon it becomes available.

    Let's go to the beach, y'all! 

Ideal Humidity Level?

    What is the ideal indoor relative humidity level for laryngectomees?

    As we know, prior to losing our larynxes as well as the use of the top half of our breathing apparatus (our throats, mouths and noses), we functioned well with the air reaching our lungs at close to 100% relative humidity.  This is the humidity level which is ideal to protect the lung tissues from drying out, as well as to facilitate the gas exchange which occurs in our lungs as we absorb oxygen and give off carbon dioxide.

     In addition to humidifying our air, our noses, mouths and throats also served us by filtering and warming the incoming air, as well as providing some resistance so that our lungs inflated and deflated with maximum efficiency for maintaining good lung capacity.

    Following the laryngectomy the relative humidity of the air which enters our lungs can easily drop to less than 50% unless some action is taken by the laryngectomee to add moisture to our incoming airflow, or retain the humidity that is already in the lungs.  It is much easier for laryngectomees to become dehydrated because we lose so much lung moisture each time we exhale.

   Winter months in most parts of the Northern Hemisphere are the laryngectomee’s toughest time of the year.  Most of us keep our winter indoor temperatures at 68-70 instead of the 78-80 degree level maintained during the summer.  Cooler air cannot hold as much moisture, and the indoor air is further dried out by running the furnace during the winter season.  As many of us know from personal experience, this frequently leads to a feeling of uncomfortable tightness in our stomas, increased mucus production as our systems try to protect the lining of our tracheas and lungs, and even cracking and bleeding as skin dries around and inside our stomas and lining of our tracheas and lungs.

    As suggested above, we either have to (1) add to the humidity level of our homes, (2) conserve the humidity within our lungs by wearing an HME (heat/moisture exchange filter), or (3) add to the humidity in the air which enters our stomas directly by dampening our foam or cloth stoma covers.

    The heating and air conditioning experts have typically recommended indoor relative humidity levels of around 30-40% with an indoor temperature of 70 degrees.  But since laryngectomees need significantly higher levels of humidity, we often add to this through the use of humidifiers attached to our furnaces, by using portable humidifiers, or dampening our stoma covers.



    As the graph indicates, it is possible to raise the indoor relative humidity to higher levels than the standard 30-40% without creating negative effects on indoor air quality.  A level of 50% or even 60% may actually make the quality of our indoor air healthier.  But as the graph also indicates, too much humidity can be as bad as too little whether we are laryngectomees or not.

     This suggests that we might consider monitoring our indoor relative humidity levels especially during the cold and dry season. Inexpensive humidity gauges are available for as little as $4.  Pictured is a digital one recently purchased from Walmart for around $15.  It indicates indoor and outdoor temperature as well as relative humidity.  Perhaps you will put it or something like it on your Christmas wish list for Santa?

    Monitoring the indoor humidity, adding a little moisture to our air with humidifiers, and wearing a dampened foam or cloth stoma cover can keep us, as well as our homes, a little bit healthier this season.

Tale of the Whale - Dick Scheele

    "I would like to tell you a success story.  Three years ago, shortly after surgery, I found WebWhispers.  Along with my best friend who stayed by my side for six months to help encourage me, take my guff and smile a lot; you provided the jolt I needed to get me out of self-pity.  At that time I set a goal. I will overcome this and return to my life of lecturing and teaching about the ocean" (Dick Scheele).

    Dick Scheele retired from the Air Force in 1969, and then retired completely in 1985.  He had lived for many years in Hawaii where he had learned to dive and kayak, and these skills and interests lead him to the Sea Life Park in Oahu.  He became a docent (volunteer tour guide and teacher) in the education department there, and also at the Hawaii Maritime Center.  He put in more than 2000 hours as a volunteer teaching about sharks, whales, octopi, and the sea he loves.

    He also became an interpreter on a whale watch ship in Hawaii, and worked on a humpback whale research ship in southeast Alaska for two ten-day summer cruises. 

    He moved to Port Townsend, Washington in 1995 and volunteered at the Marine Science Center.  But a laryngectomy and loss of part of his pharynx followed his diagnosis of cancer.  He feared that his lecturing days were over until his daughter brought him a sign language dictionary. 

    "I started learning ASL (American Sign Language) so that I could offer my acquired knowledge to some people who have not had the chance to learn about the things that excite me so very much -- the oceans and the life in them." 

    He has since escorted several deaf people through the science center exhibits.

    "When I was told I wouldn't be able to speak in public again, I said, 'watch me!'  When they said my voice wouldn't hold up, I shouted." 

    Dick had tried to learn esophageal speech, but was not making much progress and was relying primarily on his artificial larynx.  His SLP (speech/language pathologist) told him that he could speak to people if he wanted to despite his problems in learning esophageal speech.  So he had the TEP (tracheoesophageal puncture) surgery.  He relegated the AL to backup status, and devoted himself to learning lung-aided esophageal speech via the voice prosthesis.  He didn't like the way he sounded, but he practiced and got much better.

    "Some time back I told you that I want to talk to children about not smoking. You came through again.  I now have received the speaker's manual and good advice.  I now have a new goal.  Not bad for 74, I think."

    Dick was recently asked to speak at the speech and hearing clinic at the University of Washington.  He and his SLP expected a half dozen students, but 50 showed up to learn firsthand about laryngectomee rehabilitation.  Last month he also had the opportunity to visit a new laryngectomee.  As many of us have discovered for ourselves, he had not previously been told very much of what he wanted and needed to know and was grateful to Dick for the information he provided. 

    Despite subsequent radiation, a problem with a fistula (surgical wound which did not heal closed), and some chronic pain, Dick continues to tell the world about the oceans, the dangers of smoking, and the rehabilitation of laryngectomees. 

    "For all of you out there that are in doubt, know that you can.  You will and can if you believe that you can." (Dick Scheele)

Dick can be reached at:  Whale76@olympus.net   



Neck Breathers’ Knowledge of Resuscitation Techniques
by Judy Fellows, Ph.D., CCC-SLP; Paxton Oliver, Ph.D., CCC-SLP; and Rebecca Wright, B.A.

    Improved medical technology has increased the number of surviving neck breathers.  In an emergency situation, however, they have a unique problem as they cannot be resuscitated using traditional cardiopulmonary resuscitation (CPR) and rescue breathing techniques, nor can they resuscitate others.  Most training focuses on the majority of the population who do not breathe through a stoma.  One purpose of this study was to investigate whether persons who breathe through a stoma have been trained in CPR and/or rescue breathing techniques specific to a neck breather.  An additional purpose was to determine whether caregivers have been trained in these techniques.  The final purpose of this study was to determine whether respondents and/or their caregivers were familiar with an artificial respiration device (e. g., Pulmanex, handheld bellows), whether they owned one, and whether they had been trained in its correct use.

    Surveys were mailed to 277 presidents of New Voice Clubs, 253 in the United States and 24 in other countries.  Seventeen questions investigated whether the neck breather or caregiver had been trained in stoma-to-mouth or mouth-to-stoma rescue breathing, CPR, and/or the use of an artificial respiration device. 


    The majority of those who answered the survey, 84% of laryngectomees and 83% of caregivers, reported that they had not received any training in rescue breathing.  Just 16% had received this training (with 13% expressing confidence in their skills); and fewer (14% and 12%) respectively reported receiving training in the use of artificial respiration devices.  Overall, respondents indicated a lack of knowledge and training about lifesaving techniques specific to a neck breather, regardless of age, gender, or race.

    The implications of this research study are significant for neck breathers, their caregivers, and healthcare professionals.  The lack of knowledge and training in the use of lifesaving techniques specific to the neck breather puts an entire population at risk.  This research identifies a need for education in CPR and rescue breathing.  Neck breathers, caregivers, and healthcare professionals need to receive training in the use of these techniques.  At a minimum, more than one or two sentences in a first aid book or a passing comment in a CPR class needs to occur. Although CPR and rescue breathing techniques specific to a neck breather only require minor modifications, failure to properly execute mouth-to-stoma or stoma-to-mouth resuscitation could result in brain damage or death.

    (Drs. Fellows and Oliver teach at the University of Louisiana at Monroe, and Ms. Wright is a recent master's degree graduate. Drs. Fellows and Oliver can be reached at cdfellows@ulm.edu and cdoliver@ulm.edu )

    Editors Commentary: The medical and emergency services professions are currently reevaluating the recommended methods for rescue breathing and CPR.  Specifically, consideration is being given to a chest compression-only CPR method since there are indications that adequate air exchange routinely occurs with just the chest compressions, and that bystanders are more likely to initiate rescue breathing methods which do not involve mouth-to-mouth resuscitation out of concern for the possibility of saliva or other fluid transmitted disease. 

    But whether this change occurs or not, laryngectomees and their caregivers should seriously consider obtaining training so that either could keep the other alive until help arrives.  Laryngectomee support groups should consider working with their local hospitals, emergency services, etc., to provide training in these methods and, once the training has occurred, consider purchasing an ambu-bag (Pulmanex, "Blue Bag”) to keep at home and in their cars.

Ouch!

    In the "things could always be worse" category, imagine having a laryngectomy without the benefit of anesthesia.  The drawing is reportedly a medical illustration of 16th century laryngectomy procedures. If authentic, it is interesting to note the curved laryngectomee tube on the left (with a string attached). It looks remarkably like today's laryngectomee tubes (vents, buttons). 


The Downside of Staying Busy
by Steve Verngren

    While at my job as a service station manager/auto technician I was trying desperately to get all the work out and customers notified by closing time.  With all the last minute calls to be made and with time running out I found myself doing a very unusual thing. 

    I had the Servox to my ear and the cordless phone at my stoma!  I couldn't do anything but LAUGH!

    Steve can be reached at SMVBirds@aol.com 


by Judy Greiwe (jgreiwe@iquest.net

Welcome New Members 

    We welcome the 16 new members who joined us in November:

Mike Beckovich
Clairton, PA
MikeBckvch@aol.com
Mary H. Bellandese, SLP
Orono, ME
Mary_Bellandese@umit.maine.edu
Jim Blichmann
Shawnee, KS
dblich@earthlink.net
John Dysinger
King of Prussia, PA
surviving236@aol.com
Saul Farber
Egg Harbor Twp, NJ
shanashana@prodigy.net
Malcolm Gantt
Crouse, NC
lynxman@aol.com
Jeannette James
Bellflower, CA
DJoutlaw@aol.com
Eddie Martin
Oklahoma City, OK
edcmartin@email.msn.com
C. Bowen Nelson - Caregiver
Timonium, MD
unameit@us.net
Pieter Nieboer
Bunschoten Spakenburg- Netherlands
PieterNieboer@workoutshop.nl
Don & Becky Pacey
Eagar, AZ
bekki_@frontiernet.net
Dick Sipp
Whitmore Lake, MI
rsipp@earthlink.net
 Phyllis L. Stevens
Londonderry, NH
RandPStevens@prodigy.net
Kris Tollerson - SLP
Raleigh, NC
Kent92@earthlink.net
William Wegman
Winnemucca, NV
billgg@the-onramp.net 
   Judy Woods
Lexington, KY
Jwoo9626@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.

 
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