January 2004


 

Name Of Column Author Title Article Type
Roger's Ramblings Roger Jordan Scooting Around Experiences
VoicePoints Jeff Searl, Ph.D. Yeast InTE Prostheses  Education-Med
Musings From The President Murray Allan Happy New Year Greeting News & Events
News, Views, & Plain Talk Pat Sanders What Is The IAL Annual Meeting Experiences
Bits, Buts, & Bytes Dutch Computer Tips Experiences
Welcome New Members Listing Welcome News & Events

 

 


 Roger's Ramblings
  
                                                                                                                   by Roger Jordan (Laryngectomy - 1993)
 

SCOOTIN' AROUND

     Although I have very weak legs due to having encephalitis, similar to polio, when I was in the Air Force and find walking or standing for any length of time difficult, I have attended the last several IAL meetings with no problems.  I have done a lot of other traveling as well.  My secret?  I have an electric power scooter.  In fact I have two of them.

     I bought a very light weight one, only 65 lbs., that I use exclusively for air travel.  The airlines check it as baggage, I ride it right to the gate and it is delivered to me at the gate of my final destination.  If I have to change planes, the airlines all provide wheelchair service from gate to gate.  Once I get my luggage and clear customs, if applicable, I stow the luggage to the cab area.  The scooter handle bars fold down and the seat easily comes off so it will fit in the trunk of most vehicles (no tools needed).  As I recall, I paid about $1700 for the unit.

     At home, I have a larger scooter, a Pride Celebrity 3 wheel, pictured at right, which is faster and has a larger basket for carrying things.  It, however weighs about 165 lbs. and I put a Bruno lift in my Safari GMC van to load and unload it.  I do prefer the larger unit, as I weigh over 200 lbs. myself and the lighter travel scooter, though rated for 250 lbs.,  strains on even a moderate grade, and the battery charge doesn't last nearly as long.

     Anyone with trouble walking should  consider getting a scooter.  In many cases the VA, Medicare, or private insurance will pay most of the cost, including  the lift for a van.  The VA will also pay $9,000 for the first time purchase of a van needed by a service connected disabled veteran to transport his or her scooter.  I was unaware of this benefit when I got my first scooter and bought the van myself.  The VA did install the power lift.  I bought the light weight scooter from a scooter dealer near Tampa.  But there are many brands of both types of scooter and they all advertise extensively.

     I wholeheartedly recommend getting one.  It will return those who need one to the world of the mobile population.  In fact, Joy can't keep up with me in stores or malls.  At Disney World in Orlando, I outran Joy and my daughter and her husband.  And as a side benefit, scooter users and their entire party go the head of the line at Disney.  On that occasion, I drove to Orlando so had my larger scooter with me.  An overnight charge of the battery lasted all day with no slowing down.  With my smaller scooter, I would have had to plug it in periodically during the day.  In Las Vegas, for example, I would plug in at lunch in a restaurant and again at dinner.  Each time, this would provide sufficient power for a few more hours.  

     There is a fascinating world out there.  The opportunity to meet and learn from so many other larys is just a part of it, albeit a very important part to us.  So get a scooter and hop aboard. 

************************

WebWhispers members Bob and Lesley Herbst from New Haven, CT, found that they, too, needed some reliable "scooter assistance" recently.  Unfortunately, Lesley had injured her leg just prior to the WebWhispers 2003 Caribbean Cruise.  Undaunted, they arranged with a company for a rental "scooter" to be waiting in their cabin aboard the "Navigator of the Seas" and then Lesley "scooted" virtually everywhere she wished to go while on the cruise.  When they disembarked back in Miami, they just left the scooter in their cabin for the company's representative to pick up.  Remarkably hassle-free!!   Amazingly, the company that Bob and Lesley used was "CareVacations, Ltd" in Leduc, Alberta, Canada!!  Their web site is at: http://www.carevacations.com/.    Ed.



 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 Jeff Searl, Ph.D. ]

Yeast Colonization of Tracheoesophageal Voice Prostheses
By:  Jeff Searl, Ph.D., Assistant Professor, Bowling Green State University, Bowling Green, Ohio

      Over the past 25 years, tracheoesophageal (TE) speech has become one of the primary communication options available to individuals after laryngectomy.  The resulting speech can be quite intelligible in most TE users and a large percentage of laryngectomees that try TE speech stick with this method for the long-term.  However, one persistent difficulty that some TE users face is premature failure of a voice prosthesis because of a build-up of yeast on or near the valve.  When this happens, the valve may not function properly.  As most TE users are aware, there is a small one-way valve housed inside the voice prosthesis.  When voice is not being produced or when swallowing, this valve is in the closed position.  This means that the voice prosthesis is blocked by the valve so that saliva and liquids are unable to flow from the esophagus to the trachea.  During speech, air is directed into the voice prosthesis from the trachea, pushing the one-way valve open, allowing air into the esophagus to be used for producing voice.  

What Happens When Yeast Builds-up on a Voice Prosthesis?

     If yeast builds-up on the voice prosthesis, particularly if it is on or near the one-way valve, the opening and closing of the valve can be affected.  Some TE speakers may experience leakage of fluids (either saliva or liquids being swallowed) through the prosthesis because the yeast colony is preventing the valve from closing.  This usually causes the person to cough and is generally considered to be unhealthy for the lungs if the liquids make it to the lungs over a long period of time.  Although perhaps less common, in other TE speakers the yeast build-up can interfere with the opening of the valve when they try to talk.  If the yeast colony is in just the right spot it may only let the valve open partially which could reduce the amount of air flowing from the trachea to the esophagus when they try to speak.  This could negatively affect their voice (e.g., decreased loudness, trouble starting the voice, no sound coming out, having to work harder to get voice, etc.).

Where Does it Come From?

          The mouth is the primary source of yeast that can ultimately grow on the voice prosthesis.  Yeast is actually a term for fungi.  All individuals, whether they have a laryngectomee or not, have a certain amount of yeast organisms (as well as bacteria and other things) in their mouth.  Yeast is said to colonize when there is more than the usual growth of the fungus in a given location.  An example that many people are familiar with is oral thrush, which is usually a whitish, feathery, sore patch that can show up on the tongue or other parts of the mouth and throat.  Yeast from the mouth is carried into the throat and then the esophagus when a person swallows saliva.  In TE users, this creates the possibility of yeast coming into contact with the voice prosthesis where it can attach and grow.

          There are a number of different species of yeast.  The type of yeast most commonly referenced when discussing voice prosthesis colonization is Candida albicans, which is present throughout the gastrointestinal tract in all individuals.  However, while the albicans variety may be the most common, it is not the only type of Candida that has been identified on TE voice prostheses (a study from Belgium by Dr. Bauters and colleagues [2002] identified four different Candida species with relatively high concentrations).

          Individuals who have undergone laryngectomy are at risk for a higher than normal concentration of yeast in the mouth, and those who have undergone radiation therapy are at an even higher risk.  Following the total laryngectomy procedure, the trachea is turned to the front of the neck and is open to the outside air at the stoma.  This separates the lower airway (trachea and lungs) from the upper airway (throat, mouth, and nose).  Because of this, airflow in the mouth is quite different than it was before the surgery since a laryngectomee, of course, now breaths through the stoma and not the nose and mouth.  This change in air flow can alter the oral ?flora,? or the make-up of bacteria and other organisms that are normally present in the mouth.  Once such change occur, there can be an increase in yeast growth.  Undergoing radiation therapy in the head and neck region increases the risk of yeast proliferation.  Chemotherapy, or any other treatment or medical condition that suppresses the immune system, also increases the chance of yeast colonization.  There are other things that can increase the risk of excessive yeast in the body (including the mouth) including over-use of antibiotics, severe burns, diabetes, and tuberculosis.

What Can be Done to Help?

          The issue of managing or eliminating yeast colonization on TE prostheses has been a focus of concern for TE users, the ENTs and speech pathologists who treat them, and to researchers.  Below are several steps that may help laryngectomees who have persistent problems with TE valve failure because of yeast growth.  The approaches are divided into three categories: medications, voice prosthesis considerations, and ?other.?

          Medication

         The recommendation offered Dr. Eric Blom and others for TE users with yeast colonization problems involves use of a type of medication broadly classified as an antimycotic.  TE users must consult with their ENT doctor about the use of the medication, but typically the procedure that is recommended involves swishing 1tsp of the oral suspension of Nystatin (an antimycotic) for a minimum of 4 minutes in the mouth twice a day.  The Nystatin can be swallowed or spit out after swishing.  This helps to reduce the yeast present in the mouth.  There are other antimycotic medications such as miconazole and fluconazole that might also have a role in managing the problem.  In a study from the Netherlands (Weissenbruch et al., 1997), researchers reported that a slow-release miconazole tablet adhered to the cheek on the inside of the mouth helped extend the life of the voice prostheses being used.  Some antifungal lozenges area also used to control oral candidiasis (e.g., Clotrimazole, Amphotericin B.).  Again, a medical doctor would need to be consulted to see if any medications are appropriate for a given laryngectomee.

          Voice Prosthesis Considerations

          The type of TE voice prosthesis used may also be a consideration for individuals dealing with re-current yeast colonization.  There has been a longstanding effort to develop a voice prosthesis that is resistant to yeast.  One manufacturer has recently put on the market an indwelling prosthesis in which the valve is manufactured from silicone that has a small amount of silver oxide in it.  Silver oxide is known to have anti-fungal properties and so should help limit yeast development.  This product is just now showing up in the clinical population and so it is expected that more and more will be published in the literature about the effectiveness of the device.

          Another TE prosthesis on the market that may be more resistant to the growth of yeast is the Voice Master (developed in the Netherlands by Dr. P. Schouwenburg).  This particular device is not widely used, at least not in the United States.  However, the body of the prosthesis consists of a titanium sleeve which is apparently resistant to the growth of candida.

          Another suggestion frequently made by laryngectomees and speech pathologists who work in this area is for regular cleaning of the prosthesis.  The specific definition of ?regular? cleaning may be open to debate, but a general rule of thumb is that the longer the interval between changing and cleaning the prosthesis, the higher the likelihood of trouble to expect from yeast colonization.  For those laryngectomees who change their own prosthesis (that is, those NOT using an indwelling device), besides regular cleaning of the device, soaking in a peroxide has been suggested as a means of killing yeast cells on the silicone.  This is not specifically recommended by the prosthesis manufactures and it is unknown how the peroxide (or other soaking solutions that are sometimes discussed such as bleach solutions) might degrade the silicone material itself, although a number of laryngectomees and speech-pathologists have suggested this method.

          Other Things

          This last set of suggestions is just a short-list of some of the ideas offered by laryngectomees themselves or the professionals involved in their care.  A number of individuals have increased their intake of yogurt and feel that this helps reduce the yeast colonization problem.  This is used to help manage yeast issues in other parts of the body and may do the same for problems involving the TE prosthesis.  As long as you like eating yogurt (it must have the live acidophilus bacteria), this seems like a worthwhile thing to try although it may not help some people.  You can also get the acidophilus bacteria ( Lactobacillus acidophilus) in other forms at some health food stores.  Others have suggested cutting back of foods that might promote yeast growth if there is already a small population of candida organisms present.  For example, sugar is known to promote yeast growth, at least when other conditions are favorable.  So, some have suggested that cutting back on sugar-laden products may be of some use in limiting growth.  In contrast, others have suggested that it may be worthwhile to create an inhospitable environment for yeast growth via the food that is eaten (e.g., acidic types of substances).  However, I have not seen any specific research literature addressing dietary issues and TE voice prosthesis yeast colonization.

          The primary message is that there are things that can be done to help limit, and in many cases eliminate, problems with TE voice prosthesis failure secondary to yeast colonization.  Use of Nystatin (and possibly other antimycotic medications) is a fairly well accepted technique that has been found useful by a number of individuals.  The development of fungus resistant voice prosthesis also represents a nice advancement for helping to manage the problem and more information on theses prostheses should be forthcoming in the literature.  Finally, laryngectomees themselves (and their speech pathologists) are often a vary resourceful lot.  They will likely continue to explore their own ideas about ways to help manage the problem.  One must be careful of accepting all the suggestions offered even if it seems to make sense, checking with others (most notably your doctor and speech pathologist) in order to avoid any unintended harms.



                Murray's Mumbles ... Musings from the President

   
 I wish everyone the healthiest and happiest year for 2004. Wow, 2003 sure skipped by quickly, didn't it?

     A special
HAPPY NEW YEAR goes from me to the WW Executive Committee, Dutch, Pat, Terry and Libby.  Although I'm a shy, introverted guy <grin> who has trouble expressing his feelings, I can say that I love all you guys!  We know what brought us together - throat cancer.  Who knew that we would form such a bond that it will last for a lifetime? Although laryngeal cancer is not the best thing to be stuck with I think we have been blessed as we have met and been able to help so many of those afflicted.

     In 1998, when I had my surgery I was at a complete loss as to what to do.  I was 63 years old and recently retired.  I found WW in December 1998 and the rest is history.  I also became president of our local club and devoted many hours to this group and visitations to our newbies.  Then I discovered the IAL, became active with that group, and am now the acting VP.  SOMEONE decided what I'd do with my retirement time!

     All the people I have met and that have touched me since my laryngectomy have been incredible.  Yes, there have been some tough times with members passing but there have been many better times with new members who have a TEP inserted and are able to TALK!  What a thrill to see their faces when they say their first words and to see them progress as they get better and better.

     I cannot close without thanking Dutch again for the great efforts he took in founding WW.  I don't think he even knows how many lives he has touched and will touch for the better.  We are truly thankful for his brilliant idea to assist those who virtually had nowhere to go.

     I am delighted that I am able to take this journey with you together. It makes me extremely happy!

     Happy Holidays and PEACE ON EARTH!

Murray Allan, President
WebWhispers Nu-Voice Club
Argus@shaw.ca

 



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

What is the IAL Annual Meeting?

     We had a great article by Dr. Ed Stone about the Voice Institute in last month's issue of Whispers on the Web but there are some people who want to know what the Annual Meeting has to offer, when to sign up and what to do there!

     Murray Allan had this to say about the next meeting site, " Currently, in addition to being WebWhispers President, I am active as Chair of the Annual Meeting committee of the IAL which is holding its annual convention in Anaheim, CA from July 6 to 10, 2004 (Voice Institute: 6-10 July, Annual Meeting: 7-10 July).   The convention is being held at the beautiful Anaheim Sheraton which is just three minutes from Disneyland by shuttle.  What a great chance it is for everyone to gather with their friends and enjoy the wonders of this marvelous attraction at the same time.  We are trying to obtain reduced rate passes for evenings at Disneyland. I have attended the hotel for an interim meeting and it is truly a first class establishment with a staff to match. If you can possibly make it, don't miss this great meeting."

     Here are some personal thoughts.  Do your registration online or by snail mail well in advance (see Dutch's column in this issue for how-to).  Then decide what day you are going and make your hotel and airline reservations   If you don't have anyone to share a room, the IAL or other WW members may be able to help with that.  You will be able to visit the IAL registration desk at the hotel on Wednesday afternoon (July 7th)  for early registration but officially Thursday is the start of the AM.  You will be given a nametag with ribbons, some of which indicate that you are a newcomer or a delegate!  There is always a "goody" bag with an assortment of nibbles and gifts.

     The AM schedule shown on the web at the present time is under construction and there will be a lot of additions and changes made as speakers are confirmed but it will give you a general idea.  There will be opening ceremonies and they are always exciting and impressive.  This event is shared by both the VI and the AM attendees.  At various times during the entire convention, there will be shared activities.  At other times, there will be  speakers in the AM section, or a choice of activities with some business meetings going on at the same time. It can be a little like a 3 ring circus with lots of things going on.  In addition, you may choose to attend the VI classes if you sit in the back, observe and listen.  Since you are not signed up for the VI, this is a courtesy extended to you if space allows.

     Some AM speakers will be professional and some will be laryngectomees or other parties with expertise in their field.   I have been asked to lead a discussion this year for the AM and I suggested the topic of Newsletters.  I would hope to have in attendance other editors with copies of their newsletters and people who want to start a local newsletter or need ideas for existing ones.  We can share with each other and each go home a little wiser.

     Vendors will have tables set up and it is difficult to find enough time to see everything.  Plan to spend time there looking, asking questions, and sometimes trying new products.  You get to see products you had only heard about.  Lots of literature is laid out for the taking and there are usually some nice give-away items so carry your goody bag.

     There will be some evening activities, usually including a Meet and Greet and a Sing-a-long.  On Friday evening, there will be a reception and dinner for WebWhispers.  Details and cost will be announced later.  Remember that Saturday evening's IAL banquet is already paid for with your IAL or VI registration and it is always superb so plan to go.

     Check over Dutch's article below to go to the web site and browse for more information.





                            Dutch's Bits, Buts, & Bytes
 
"IAL 2004 in Anaheim - How to Navigate the IAL Web Site"

     OK ... you've pretty much decided to go, but now need some more information on the programs, the hotel, the hotel reservation and meeting registration processes, etc.  Well, by far the best place to go is to the Anaheim section of the IAL web site.  It can be accessed from the main IAL Home Page or directly via the IAL 2004 Anaheim Home Page at:  http://www.larynxlink.com/Anaheim/Anaheim1.htm.

     (1) To check out the Annual Meeting AND the Voice Institute programs, simply scroll down the above Anaheim page to the red-bordered white "box" and click on the LINK that says:
"AM/VI Schedule of Events".  This will take you to the Schedule of Events page.  The schedules are now probably 90% firm but will undoubtedly be updated many times between now and July of 2004.  If you want more details about the Voice Institute, just scroll to the bottom of the "Events" page and click on the LINK that says, "Voice Institute".  This page contains a current course description written by Dr. Ed Stone, the VI's Director.
OK ... now you have some details and now you want to register with the IAL to attend EITHER the Annual Meeting or the Voice Institute.

     (2) At the bottom of the above pages, and on others, there is a LINK that says, "
AM/VI Registration Pages".  Click on that LINK to reach the Main Registration Information Page.  The upper half of this page provides AM/VI information that you need to know.  The lower half of this page provides your LINKS to the specific AM Registration Page or the VI Registration Page you will need to access to properly register with the IAL.  For both the AM and the VI, you have two choices ... (1) a LINK to Dual Registration FORM that you can print out and then mail in or (2) a LINK to a secure electronic Registration Page which you can complete, using your VISA, MasterCard, or Discover card, and then send it off electronically to the IAL.   There is also Hotel Information at the bottom of this Main Registration Page ... but we'll cover THAT later.

     (3) So, for IAL Registration you have two choices ... a mail-in form you can print out OR and electronic form you can complete and send in.   The mail-in form is self-explanatory, but the electronic form is easy, too.  From the Main Registration Page, simply click on the LINK to the registration form you desire, either for the AM or the VI.   When you get to the secure form page, you will notice a small "lock icon" in the lower right hand corner of your computer screen.  This indicates that you are logged into a "secure page" and can feel confident about entering the personal and credit card data that is requested.   Once you have filled in the blanks or checked the little "boxes" with the correct information, just double-check them for accuracy, and then click on "
Submit Form".  It may take a few seconds for the information to transmit but when it does you will get a new "Thank You" page, acknowledging your registration.  And, BINGO ... you are now REGISTERED.

     (4) OK ... you are now registered for the IAL meeting, but now need the Hotel Reservations.  You can reach the "
Hotel Reservation Instructions and Information" Page via a LINK from the Anaheim Home Page, from any of the other pages above, AND from the Registration Acknowledgement Page that you got back immediately after registering.   Once ON the Hotel page, scroll to the bottom to the black-bordered white "box".  Therein is ALL the information you need to make your hotel reservations ... by PHONE or by FAX.  Just follow those simple instructions and you are DONE! (I, myself, being lazy, just FAX'ed them a letter with my reservations request ... and, surprisingly, I received an Email confirmation from the hotel within just a few short hours.)  By the way, just below the little white information box is a LINK to a Sheraton-sponsored page that covers the many attractions in the Anaheim area ... certainly worth your visit!!

     (5)  Finally, are you interested in pursuing an IAL Batten Scholarship to help you attend the Voice Institute?  If so, just go back to the IAL 2004 Anaheim Home Page, scroll down again to the LINKS and click on the one that says, "
2004 Batten Scholarship Applications (VI Only)".  This will take you to the form which you can print out, complete, and then mail in for IAL review and approval.  Piece of cake!!

     I hope the above "tutorial" will help you navigate the IAL site so that your registration and reservation experiences will be good ones ... user-friendly and successful.   Hope to see MANY of you in Anaheim in July of 2004!

(Note: When you do register, for the AM or the VI, please send me an Email letting me know ... giving me the names and the home towns of those in your party, so that you are correctly listed on our Anaheim Attendees Page on our web site.  In this way, all WW members can know, at a glance, which other members will be attending.  Thanks much!!)
 


 

   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 BLOWHARD

Blowhard feels the need to present his credentials before entering the fray -
even if they are irrelevant to the discussion. For example, in a movie forum
conflict he might attempt to settle the matter by saying, "As a Ph. D. candidate
in particle physics I believe I can say with some authority that the 'Beavis and Butthead'
movie represents the emergence of a new cultural paradigm." Huh?

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


   Welcome To Our New Members:
I would like to welcome all new laryngectomees, caregivers and professionals to WebWhispers!  There is much information to be gained from the site and from suggestions submitted by our members on the Email lists.  If you have any questions or constructive criticism please contact Pat or Dutch at Editor@WebWhispers.org.   Take care and stay well!   Murray Allan, WW President

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

Lee & Diane (caregiver) Allard
Kirkwood, NY
Margaret Attridge
Homosassa, FL
George Bechard
Waterloo, Ont., Canada
Sarah Brinklow - Caregiver
Brockport, NY
Stephanie Buck
Gloucester, MA
Riley Caudill
Lexington, KY
Walter Crosby
Ann Arbor, MI
Ian Currie
Tauranga, New Zealand
Robert Dlouhy
Riverside, CA
Claude Duhamel
Lafayette, GA
Vicky (caregiver) & Gerald Kaufman
Camby, IN
Ian Kurka
Titusville, FL
Betty Lamppa
Wyoming, MN
Vicki Leslie - Caregiver
Hercules, CA
Clarence Lewis
Beaumont, TX
Sharon Lickman
Elsie, MI
Sid Miller
Fort Myers, FL
Clarence Mitsdarffer
Evansville, IN
Alan Shafran
Tarpon Springs, FL
Robert Shelton
Hampton, VA
Roger Silberman
San Francisco, CA
Marshella Ungerer
St. Joseph, MO
Sue Ward - Caregiver
Greenville, VA
 



Happy New Year 2004!!



 
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.



  ? 2004 WebWhispers
Reprinting/Copying Instructions
can be found on our
WotW/Journal Page.