December 2003

 

 

Name Of Column Author Title Article Type
VoicePoints Ed Stone, Jr., PhD The IALVI Education-Med
Musings From The President Murray Allan Crusing News & Events
WebWhispers Columnist Bill Thomas Larys Need Love, Too Experiences
News, Views, & Plain Talk Pat Sanders Cool Clinic On Cruise Experiences
Bits, Buts, & Bytes Dutch Computer Tips Experiences
Welcome New Members Listing Welcome News & Events

 

 

 

 VoicePoints
  
  coordinated by   Dr. Dan Kelly, Associate Professor ( dy_kelly@msn.com )
                                Department of Otolaryngology, Head & Neck Surgery
                                7700 University Court, Suite 3900, West Chester, OH  45069

      [ ? 2004 R.E. (Ed) Stone, Ph.D. ]

The IAL Voice Institute: Its Past, Present and Future

By R.E. (Ed) Stone, Jr., PhD,  Director, 2004 IALVI

 

Forty-four years and still running!  Most training programs in Laryngectomee Rehabilitation have come and passed into oblivion.  Yet, the International Association of Laryngectomees Voice Institute (IALVI) continues for nearly one-half a century.  What is it?  How does it benefit individuals?  What does it bring to IAL?  How can one participate? 

 

What is the IALVI?:

 

Beginning in 1960 as a creation of Speech Language Pathologists Warren Gardner, John Irwin, John McLear, an audiologist, Frank Kleffner who served as Director of the first IAL Voice Institute and laryngectomee, Mary Dohler, the inaugural IAL Voice Institute (VI) began in St. Louis, Missouri.  It and subsequent institutes held as their mission the education of professionals assisted by laryngectomized individuals to provide training in alaryngeal voice and speech.   As an observer at this initial IAL VI, James Shanks began a professional lifetime of service to laryngectomees and he has been affiliated with the program for most of its 44-year history.  Since the origin of the VI preceded the American Speech, Language and Hearing Associations adoption of the title Speech/language Pathologist, professionals at that time were referred to as Speech Therapists (ST).  Later, participants who demonstrated excellence in their own speech rehabilitation and who desired knowledge in helping others were invited to participate as laryngectomized trainees (LTs).  Groups of laryngectomized individuals seeking to develop their own esophageal voices were later added as Voice Institute Pupils (VIPs).  These three categories of registrants continue today. It is estimated that in excess of 860 STs, 301 LTs and 860 VIPs have participated in the VI through the years.  At an average cost of $25,000 to conduct a yearly Institute, the IAL has spent more than $1,000,000, in the training and education of individuals to work with the laryngectomized community and in addressing the voice/speech needs of VIPs.  An expanded historical coverage of the VI is provided by: Reeves, S., Alaryngeal Speech Rehabilitation Training.  Salmon, S. (ed), Alaryngeal Speech Rehabilitation. Austin, Texas: Pro-Ed, 1999.

 

One of the strengths of the VI is the comprehensive curriculum that is offered.  Although it has varied somewhat through the years it currently resembles what has been typical for most years.  During the latter 1960?s and early 70?s the VI convened for two weeks of instruction and practice in Hands-on delivery of training to laryngectomees, followed by participation to provide speech help for those attending the Annual Meeting.  This was a three week commitment for the trainees.  Economics, however, necessitated an abbreviation of the VI to one week of instruction with faculty providing group training to attendees of the annual meeting.  Present trainees have the opportunity to have directed hands on experience under the supervision of experienced faculty, as well as, the opportunity to observe faculty members in open sessions for IAL Annual Meeting participants.  Even with the shortening of the time to one week, the curriculum is similar in scope and sequence to earlier years, giving nearly equal time to consideration of the use of Artificial Larynx Devices, production of Standard Esophageal Voice and Esophageal Voice Production facilitated by the use of Tracheo-esophageal voice prostheses.  Topics for the 2004 IALVI include:

     

* ANATOMICAL CONSIDERATIONS FOR SPEECH FOLLOWING LARYNGECTOMY

* SPEECH OPTIONS FOLLOWING LARYNGECTOMEE

* ARTIFICIAL LARYNX OPTIONS AND A CURRICULUM FOR TEACHING THE USE OF ARTIFICIAL LARYNX DEVICES

* LABORATORY ACTIVITY WITH ARTIFICIAL DEVICES

* A CURRICULUM FOR PATIENTS? INCORPORATING TEP USE IN SPEECH

* SURGICAL/MEDICAL TREATMENTS OF LARYNGEAL CANCER

* WHAT IT TAKES TO GET STANDARD ESOPHAGEAL VOICE (SEV)

* GETTING THE FIRST SOUNDS WITH SEV

* A CURRICULUM FOR INCORPORATING SEV USE IN SPEECH

* PROTOCOLS FOR EVALUATING A SPEAKER?S USE OF SEV IN SPEECH

* PROTOCOLS FOR EVALUATING A SPEAKER?S USE OF AN ARTIFICIAL LARYNX

* PROTOCOLS FOR EVALUATING A SPEAKER?S USE OF TEP AND ASSOCIATED DEVICES

* RESEARCH IN LARYNGECTOMEE SPEECH AND SPEAKING

* INTRODUCTION TO TEP: HISTORY, FITTING AND TROUBLESHOOTING

* OBSERVATION OF GROUP THERAPY:

    * Artificial Larynx

    * Getting the first sounds using Standard Esophageal Voice

    * Developing proficiency and acceptability using Standard Esophageal Voice

    * Developing Excellence using Standard Esophageal Voice

    * Learning to use the Nose again for smelling

    * Meeting Problems with TEP

    * Meeting Problems with Hands-Free Valves

* OBSERVATION OF HOSPITAL CLINIC ACTIVITY FOR TEP PROBLEM-SOLVING      

* BODILY CHANGES ASSOCIATED WITH LARYNGECTOMY

* SCAVENGER HUNT FOR FACTS FROM EXHIBITORS RE: THEIR PRODUCTS AND WHO THEY ARE

* TRACHEAL HYGIENE AND STOMA CARE

* IAL TEST FOR STs, GRAD STUDENTS, and (optional) LTs 

* HOW THE FACULTY WOULD HAVE RESPONDED TO TEST ITEMS AND THE RATIONAL BEHIND THEIR ANSWERS.

 

Benefits of the Voice Institute to Speech-Language Pathologists:
 

An unsolicited evaluation of one of the recent participants summarizes nicely the contribution that the Voice Institute offers STs and LTs.  She wrote, speaking of the 2003 IALVI, ??it was the most educational, intensive, and well run course offering CEU credit I have attended in the past 10 years".

 

Several factors may contribute to the formation of such a testimonial; some professional, some financial.  The VI represents one of the finest faculties in alaryngeal voice rehabilitation.  Several senior members enjoy international reputations from their combined experiences of providing speech rehabilitation services to an estimated 10,000 laryngectomees in countries including the USA, India, Germany, Turkey, Luxemburg, South America, Canada, and Mexico where they also have lectured and conducted workshops.

 

VI trainees not only receive 40+ hours of formal didactics from the lecturing faculty  (graduate student trainees may used didactic hours toward academic credit upon approval of their academic institution) but also, trainees receive individual attention as provided in the form of mentoring to supplement the formal presentations.   Practicing SLPs may use these hours toward satisfaction of state licensure and/or CEUs.  Graduate students may also seek approval from their clinical supervisors at their academic institution for clinical hour credit.  All of our supervising faculty members hold Certificates of Clinical Competency from the American Speech, Language and Hearing Association.

 

Financially, the IALVI offers one of the best values possible.  Registration cost is $400 for practicing clinicians and $150 for graduate students.  Housing cost is usually less than the going rate at the hotel venue because of the bargaining power provided by joining with the IAL Annual Meeting.  Costs can be further reduced by sharing a room with another trainee, if desired and if it can be arranged.  Registration includes coffee breaks, the Annual Meeting banquet and several social events.  Each trainee is provided a course handbook that contains highlights of the lecturers? presentations and each ST, in recent years, has received a TruTone artificial larynx to take back to his/her work facility.

 

Additional information is available at: http://www.larynxlink.com/Anaheim/Anaheim1.htm.  Directors of academic training programs may wish to contact Dr. R. E. (Ed) Stone, Jr. (Director, IALVI), to arrange logistics and to assure that the VI meets the university requirements.

 

Benefits of the Voice Institute to Laryngectomees:
 

Whether an observer, an LT or a VIP no laryngectomee would leave their involvement with the Voice Institute without a realization that it has contributed substantially to their understanding of the process of developing functional communication.  LTs enjoy the presentations which, for them, may merely serve as an introduction to how they may assist others.  Many LTs will find the desire to return for one or more years to further their understanding of what is involved in becoming ready to assist in their home peer support group and assist an SLP in speech instruction.

 

VIPs generally come with less than desired communication skills and seek self improvement and a sense of direction for work at home.  It is not a rare occasion that a VIP comes with a history of having made no voice sounds since the laryngectomy and leaves the VI with success and restored hope for speaking again.  It is rare that a session will not have one or more ?success? stories of what seem to the individuals to be magical moment during the VI.  Let me share three.

 

Eugene experienced a glossectomy, laryngectomy and partial mandibulectomy.  He was fitted with a TEP but had not achieved success in making any sound.  During the VI he not only made his first sounds but was able to develop duration to support three-syllable phrases.

 

A man from India accustomed to public speaking as a livelihood came with a history of using only an artificial larynx device in order to continue his preaching activities.  He left the VI being able to produce multiple-syllable productions using standard esophageal voice.

 

A Bishop from Kenya attended the 2002 VI (after selling the family car to pay travel expenses) and learned to produce voice sounds on an inconsistent basis.  Borrowing money from friends, he returned to the 2003 VI and was able to develop three-syllable productions on one air charge.

     

Faculty of the VI also provides group instruction for attendees at the Annual Meeting that runs concurrently for part of the week of the VI.  Instruction is offered in:

 

   * Artificial Larynx Use,

   * Getting First Sounds using Standard Esophageal Voice, 

   * Shaping Sound into Communication using Standard Esophageal Voice,

   * Developing Excellence in Speech using Standard Esophageal Voice,

   * Problem Solving TEP Use, 

   * Problem Solving One-Way Tracheostomal Valves,

   * Spouse Question and Answer and Discussion, and

   * Learning to Smell Again (Appreciating Odors)  

     

Further, the faculty members of the VI avail themselves for consultation with attendees of the Annual Meeting.  Nowhere else can laryngectomees gain so easily-accessible and personal access to such expertise as provided by the faculty of the VI, and at no additional cost to the laryngectomee seeking help.

           

Benefits of the Voice Institute to IAL:
 

In the Voice Institute Director?s report on the 2003 IALVI to the Board of Directors in July, 2003, it was pointed out that IAL receives substantial non-tangible contributions as well as tangible benefits from sponsoring the VI. 

 

First, it should be noted that conduct of the VI is, and has been, a venture of the IAL that is a financially ?break-even? operation.  It provides an avenue for serving laryngectomees that does not deplete the funds available to IAL.  Thus, the VI is a self-sustaining outreach program that benefits not only the IAL membership but also laryngectomized non-members and the professional community.  It gives legs and arms to the goal of IAL to advocate and further the education of professionals in the area of laryngectomee rehabilitation and at the same time provide such rehabilitation to laryngectomees.

 

Aside from the financial revenues generated by contributions, grants, and registration to offset the expenses of the VI, approximately $90,000 in indirect benefits are received by IAL.  This amount comes in various forms. 

 

From the various employers represented by the faculty approximately $80,000 in lost patient revenues, salaries and benefits are donated for employed VI faculty members during the time that the members are assuming duties for the VI and AM.

 

A value of more than $2800 is represented by the ?clinical fees? that selected faculty members might charge for services rendered in providing break-out (group) training sessions for AM attendees.  Through the generosity of Distributors of TEP products who provide products during the TEP Hands-on Clinic Thursday evening more than $5,600 essentially is distributed to participating laryngectomees.  Hallway and other private consultations provided by faculty members to attendees of the IAL AM is a contribution valued at about $4,000.   Thus, in clinical services that do not necessarily relate to educating SLPs, the IAL receives more than $10,000 worth of benefits.   

 

Over the past few years, five research projects based upon work done at the VI and AM have been reported in the professional literature.  Consequently, the IAL received public visibility in venues that cannot be purchased.  Such ?Public Relations? on behalf of the IAL derived from the VI cannot be valued but is none the less most significant.

 
Continuation of the IAL Voice Institute is dependent upon professionals who care enough about laryngectomee rehabilitation to donate their time, talents and efforts to the program as faculty members.  It is dependent upon IAL letting the professional community know about this superb training opportunity.  Continuing to offer the VI at reasonable costs to STs, LTs and VIPs is mandatory and challenges the IAL to discover new ways of supporting this effort.  SLPs need to appreciate the need for serving the laryngectomized individuals in their community and to qualify themselves to provide such services through participation in such training programs.  Furthermore, agencies employing service providers need to encourage and facilitate their employees to seek the training needed in order to serve those who experience the loss of communication from removal of the larynx.




                Murray's Mumbles ... Musings from the President
 
     Well all 66 laryngectomees, caregivers and friends are back from a spectacular Caribbean voyage on the world's largest cruise ship, Navigator of the Seas.  Many thanks to Pat Sanders and Peggy and Don Byron for making such great arrangements!  There will be many articles and photos about the cruise in this edition, and later on the WebWhispers 2003 Cruise Pages, so I won't mumble any further.
 

Happy Holidays To All From
Your "Cruising Officers"
    
     Welcome to all our new laryngectomees and their caregivers!  You are starting down a road we have all traveled before and you will gain much information from this great site and accurate aid and hints from many members. Please don't hesitate to ask any question relating to laryngeal cancer or any voice disorder.
 
     If you have any comments or constructive criticism please contact Dutch or Pat at Editor@WebWhispers.org.
 
Best regards to all,
 
Murray Allan, President
WebWhispers Nu-Voice Club




 
   
WebWhispers Columnist
                                                                                                               
Contribution from a Member
 



Larys Need Love, Too!
by Bill Thomas

Four Year laryngectomee Bill Thomas receives a warm welcome from a 4 year old Bottle-Nosed Dolphin named "Exuma" at the Dolphin Encounter in Nassau, after entering the water for the first time since his surgery in August of 1999.

Bill's Thoughts:  "At first I was somewhat reluctant to get in so much water.  But, after being assured by my loving wife, Glory, that she would be by my side, as she has always been, my fears subsided and what a GREAT feeling!  There is a whole world out there!   Go for the GUSTO!"
 


Bill & Glory on WW 2003 Cruise

"Note:  If interested in trying this, notify the trainer that you are a laryngectomee and he/she will look out for you such as warning you when large amounts of water are coming your way ... so you can turn your back.  I was particularly lucky because my trainer was familiar with larys and really protected me."


 



 News, Views, & Plain Talk
  
                                                               by Pat Wertz Sanders, WebWhispers VP - Web Information
 

Cool Clinic on Caribbean Cruise

     Peggy Byron, our cruise agent, walked into the conference room, turned to look at me with tears in her eyes.  Shaking her head slowly, she said, ?I have never seen anything like this before.  All of these people helping each other.?

     Peggy, whose father is a larynx cancer survivor, was touched, as I was.  I have been to the Voice Institute and have seen something like this before but this seemed different and much more personal.

     The Myers family came on this cruise bringing son, daughter, and son-in-law and Shirley Salmon made a special appointment with them to work with Aline, who has a great deal of difficulty with finding and holding a good place to use her Servox.  We asked that the family come, too, and they all got a long conference including how to help her at home which was most important since she does need some reminders.  Shirley was kind, patient and, of course, very competent.

     A couple of tables away was sitting a lovely lady that some of us had met the day before at lunch.  We were placed at a long table in the dining room where seating was randomly done.  At the other end of the table, a woman started calling down to us in a husky voice  that she wanted to talk with ?that? lady and everyone was doing the ?Who, me?? routine.  She was pointing at me so I ordered and then went down to her end of the table to find another larynx cancer survivor.  She had her cancer over 20 years before but was having some problems and it looked as though she might have to have a complete laryngectomy.  (She had consulted at Moffett where some of our members have been treated.)  After a long conversation, we invited her to come with her husband to our Clinic the next morning.  They were there bright and early and I immediately introduced them to Mary Jane Renner?.who better?  This is what she does all the time.  Terry Duga told me that Mary Jane was wonderful in the consultation with him and his parents when he had surgery.  Again, the consultation was long and thorough and they had a chance to ask every question along with seeing and hearing all of us.  They left smiling and feeling much more comfortable with the situation, no matter what might happen.

     In the middle of the room were Mark Finfrock of Kapitex and Terry Duga chatting about different types of TEP equipment and different ones joined them and then wandered off to argue the points they had just heard.

     To the other back corner sat Jim Lauder with his magic tackle box, repairing and checking one AL after another and, as always, a crowd gathered to watch, listen and learn.  Not to mention "laugh", because Jim is always funny even when he is teaching you how to work on an AL.

     Another crowd was in the last corner where Tammy Wigginton was checking TEPs and helping with answers to other questions. There was quite a crowd around her most of the time and volunteers to be on display were plentiful.  She was working with Jim Toy to help him with his TEP speech, which was only a few weeks old.  Tammy is a terrific speaker and was lecturing on various subjects relating to our speech.

     One last touch was the table outside the door where others of us were busy signing up with Peggy for the next cruise.  Hope that we get some professionals as wonderful and generous with their time as these five on our next cruise. 





                            Dutch's Bits, Buts, & Bytes
 
       1.  OK ... you are all packed and ready to go on your first cruise!  Looking around one last time, your gaze falls upon your PC (or Mac).  "Argh", you exclaim!  "What do I do about my Emails and staying in touch with my family and friends?"

     Never fear!!  The cruise lines are fully prepared to fulfill your needs ... in either one of two ways. 

     Option One is "bring along your laptop, if you have one", plug it into the jack in your cabin, and use your laptop as normal.  While this SOUNDS good, bear in mind you must provide the laptop, some cruise lines don't have this option installed (yet), those that do likely charge an additional daily or weekly "fee" for the service, and you might also have to "rent", on board, a special cruise-ship-system compatible MODEM in order to connect.

     Option Two is to go on the cruise unencumbered by a laptop and simply use the cruise ship's "Internet Cafe" or "Internet Lounge" when you wish to check your Email or surf the Web.  Most ALL cruise ships have such a "room" set up conveniently on board, open 24/7 for your use.  Normally, it is quiet, spacious, well-appointed, and looks more like a Library than a Cafe.  The PC's are generally placed in individual "cubicles" to provide for privacy and crystal clear and simple instructions are prominently displayed (even a retired fighter pilot can read them and figure it out!).  Generally you will be charged by the minute (25 - 75 cents a minute, depending upon the cruise line) and it works as follows:

     Once seated in front of the PC, you are asked to select the LANGUAGE you wish to use during your session.  After making that selection, you are then asked WHAT you would like to access - Email, Web-Surfing, or other options.  After selecting your choice, you will then be asked to "log in".  "Logging in" normally means just swiping your "SeaPass Card" (the special card all cruisers get prior to boarding that is simultaneously your ID, room key, and on-board charge card) in the slot provided and then entering your cabin number or another unique identifier.  This confirms to the "system" that you are who you say you are and gives the system a valid account to which to charge the user fees.  Once this is done, the system then connects you to the Internet where you can access your Email accounts or surf to your heart's (or wallet's) content.

     Most systems will prompt you every 15 minutes or so ... just to make sure you wish to continue.   When you are finished and "log-off", the screen will display the number of minutes you were online and the amount of charges that will be billed against your account.   These are VERY convenient and user-friendly setups and you should not hesitate to use them while "cruising" the high seas!!  So ... you need not fear "Internet Withdrawal" while on board.

2.  I'D RATHER BE "PHISHING!"

Have Evil Hackers compromised your Ebay account?  Did your bank really lose your account access password?  Did someone use your credit card to purchase a load of stuff at the BestBuy website?   Ummm... no.  Lots of Internet surfers are getting caught in "phish bait" scams which arrive by Email.  They look very official, but the common thread is that they ask you to Email or visit a website and provide some personal data in order to "verify" or "reactivate" your account.  Don't fall for it hook, line and sinker.  Check out this article at ScamBusters:

  http://www.scambusters.com/Scambusters63.html


 

   ListServ "Flame Warriors"   


                                                                               
Terms of Importance
flame

1. n.   A hostile, often unprovoked, message directed at a participant of an internet discussion forum.  The content of the message typically disparages the intelligence, sanity, behavior,  knowledge, character, or ancestry of the recipient.
2. v.   The act of sending a hostile message on the internet.

flame warrior
1. n.   One who actively flames, or willingly participates in a flame war ... (Another Example Below) ...

THE MODERATOR

The Moderator is the janitor, the cop, the mayor, the judge and sometimes even the forum
doctor who tends to Warriors injured in battle - in other words, a "Nanny" on steroids.  Because he
runs the forum and sets the rules, the Moderator has the power to pull the plug on any Warrior
who gets a little too frisky.  Sometimes his efforts are appreciated, but like any authority figure he
is also resented - especially by "flamers", "true-believers" and other Warriors who would like to
turn the forum into their personal playground.  Most Moderators are generally fair and even handed,
but the adage that absolute power corrupts absolutely is as true on the Internet as it is
anywhere else, and it is a rare Moderator who can resist bringing the hammer down if seriously
pressed by a determined foe.  Some members will also attach themselves to a strong Moderator
to form a defensive perimeter around him, and more often than not the Moderator's
enemies will be driven off without him ever having to brandish his battle ax.

CAUTION
: The Moderator is the most powerful of all Warriors and
 drawing him into direct battle invites almost certain defeat.

Above courtesy of Mike Reed
See more of his work at: http://www.winternet.com/~mikelr/flame1.html 
 
 


   Welcome To Our New Members   

     We welcome the 25 new members who joined us during November 2003:

Bob Anderson
Sacramento, CA
Deborah Berwick
Hackberry, LA
Stephen A. Bishop
Petersfield, UK
Donna Burns - Caregiver
Montgomery, AL
 Amy Caudill - Caregiver  
Lexington, KY
Matt Cavanagh - Caregiver
Bowling Green, OH
James Cherpeski
Sandy, UT
Michael Chickey
Seeley, CA
 Paige Christian - Caregiver
Spring, TX
Joan Dalton
Middleburg, FL
Jim Davis
Akron, OH
Nona Dean
Red Level, AL
Jean Flynn
Minneapolis, MN
Bobby Harris
Macon, GA
Eugene "JJ" Hoosack
Virginia Beach, VA
John Howley
Quincy, MA
Gary Kurbis Sr.
Dekalb, IL
Kenneth A. Martin
Martinsville, NJ
Donald Moren
Flemington, NJ
Geraldine Murray
Martinsburg, WV
John Roberts
Pelham, NY
Thomas Royle
Little Lever, Manchester, UK
John Shanahan
Sellersburg, IN
Linda Todd
Missoula, MT
  Harry Wintemberg
Ormand Beach, FL
 




 
WebWhispers is an Internet-based laryngectomee support group.
  It is a member of the International Association of Laryngectomees.        
  The current officers are:
  Murray Allan..............................President
  Pat Sanders............V.P.-Web Information
  Terry Duga.........V.P.-Finance and Admin.
  Libby Fitzgerald.....V.P.-Member Services
  Dutch Helms...........................Webmaster
      

  WebWhispers welcomes all those diagnosed with cancer of the
  larynx or who have lost their voices for other reasons, their
  caregivers, friends and medical personnel.  For complete information
  on membership or for questions about this publication, contact
  Dutch Helms at: webmaster@webwhispers.org    

 

Disclaimer:
The information offered via the WebWhispers Nu-Voice Club and in
http://www.webwhispers.org is not intended as a substitute for professional
medical help or advice but is to be used only as an aid in
  understanding current medical knowledge.  A physician should always be   
consulted for any health problem or medical condition.



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.



  ? 2003 WebWhispers
Reprinting/Copying Instructions
can be found on our
WotW/Journal Page.