Internet Laryngectomee Support
November 2000

Jack Henslee is New IAL Executive Director

    WebWhispers member Jack Henslee was selected as Executive Director at the Nashville International Association of Laryngectomees convention by the IAL Board of Directors.  Until his resignation in October, Jack was a member of the IAL Board of Directors and Vice President.  The IAL has been without a paid full time Executive Director since the time of their affiliation with the American Cancer Society which had paid for the E. D.  Among other duties, the position of Executive Director serves as office manager and handles all routine business of the organization.  The position also plays a major role in the planning of the Annual Meeting and in fund raising.

    While the decision was made in August, the announcement of Jack’s hiring was withheld until the details of a contract were worked out and the document signed.  Jack recently took an early retirement after working 29 years for the federal government in the Defense Logistics Agency.  He brings to the position of Executive Director his skills in management, systems design, contract negotiation and management, economic analysis, and project and personnel management. 

    Jack became a laryngectomee in 1988. He is a cofounder of the “Look Who’s Talking” laryngectomee support group in Stockton, California, and he has edited the club’s newsletter, “Look Who’s Talking,” since 1989.  He has also served as treasurer, vice president, and president of CAL (California Association of Laryngectomees).  Jack also founded an Internet website, Larynxlink.com, which he subsequently donated to the IAL. A revision of this original website is now the Internet home of the IAL.

    IAL President and WW member George Ackerman appointed Howard Moore to fill Jack's position on the IAL Board of Directors.  George is expected to fill the vacant Vice President's position soon. 


The Fourth Voice Choice

    Most laryngectomees will be able to use one or more of the three basic methods of alaryngeal oral speech : the artificial larynx such as a Servox, TruTone, or Cooper-Rand; esophageal speech; or tracheoesophageal speech via a voice prosthesis (TEP).  But for some laryngectomees and others, none of these options is possible.  These individuals need to consider the "fourth voice" - - text-to-speech technology.  This technology involves the conversion of typed, written or scanned material into spoken speech via a voice synthesizer.  The person types the message they wish to convey, and the machine speaks it out loud.

    There are a number of equipment options available for text-to-speech communication.  Unfortunately, none of the equipment is inexpensive because of the limited market.

    WW member Jack Henshaw (TunnelRat8) says, "I have researched all of the text-to-voice communicators on the market and the LightWRITER wins hands down.  (However), I am a very active person, I type 70 to 85 WPM and found that the full keyboard is more in tune with my daily needs despite its extra weight."  The company also makes a smaller and lighter version.  While being a quick typist helps, you can still use the device if you type much more slowly, and the machine will store frequently used phrases or sentences. 

    They both feature dual displays, one facing the user so he or she can see what is being typed, and a second display facing outwards to allow communication to others in the more natural face-to-face position.  They are made by Toby Churchill in England, and are sold by Zygo Industries of Portland, Oregon.  The price for the full keyboard LightWRITER is $5,650, and you can easily add another 10% or more to that price for printers, connection capability to your home computer, hard-shell carrying case, special telephone connectors, etc.  The smaller unit begins around $1500, and a number of accessories are also available for it.  Zygo also sells a variety of other equipment for individuals with various handicapping conditions.
    


    Thanks to Zygo for providing the voice samples.  Additional information about the LightWRITER and other products can be found at :

http://www.zygo-usa.com 

    Although it is not specifically designed for the purpose, a less expensive alternative would be to purchase a laptop computer, voice synthesis software and perhaps an auxiliary speaker.  Laptops begin around $1500, and can be twice that price.

    Jack Henshaw can be reached at :  TunnelRat8@aol.com 

WW E-mail List Now Moderated

    The WebWhispers e-mail list became a moderated one on October 9, 2000. Previously, the list had been self-moderating and each member was presumed to have read and understood the rules, and to have been willing to abide by them as a requirement for participation on the list. 

    A growing number of incidents of noncompliance with the rules, the unwillingness or inability of some members to change their behavior, and the withdrawal of some other members because of rule violations by a few, prompted this change.  According to our WebMaster, it should have no effect on the e-mail postings of 99% of the members.  Instead of members immediately posting messages to the group as before, all messages are first screened for compliance with the rules by the WebMaster or his designee.

    Non-complying e-mails are rejected and returned to the sender with an explanation.  The sender may then either make appropriate changes and resubmit the e-mail, or may choose to simply post the message as written on the Bulletin Board.  Our other e-mail list, WebWhispersHealthHelp, was set up originally to be a moderated list and is unaffected by this recent decision. 

    All members who submit e-mail to the list should be familiar with the rules under which the WebWhispers list operates. You can review these at :

http://www.webwhispers.org/pages/EmailRules.htm  

"Won't you let me take you on a sea cruise?"

     WebWhispers members, IAL friends, family and friends are marking their calendars, checking their wardrobes, and saving their money for a cruise to the Caribbean in April.  On April 22nd participants will leave New Orleans for an 8 day/7 night cruise with ports of call at Montego Bay, Jamaica, Grand Cayman, Playa Del Carmen, and Cozumel. 

    Prices vary according to the location of the cabin.  All prices are based on double occupancy and range from $740 and up for inside cabins, $780 for those with portholes, and $860 and up for outside cabins with windows. 

    Included in the price are the cruise, "Welcome Aboard" rum swizzle party , all meals (even breakfast in bed if you like), Captain's Dinner, Captain's Cocktail Party, nightly late night buffet, 24 hour a day pizzeria, complimentary 24-hour stateroom service, wide range of entertainment including different nightclub shows each evening, service, singles and past guest cocktail party. 

    In addition to your reserved table in the dining room, you can also select the always casual dress "Seafood Bistro" where meals are served buffet style and features salads, pastas and such choices as broiled swordfish, lamb chops, and steaks grilled to order.  It is also open for breakfast and lunch. Ice cream, frozen yogurt and freshly made cookies and brownies are also available in the Bistro area any time. 

    Also included is casino (includes slots, blackjack, craps, Wheel of Fortune, roulette, MegaCash and Caribbean stud poker), nautica spa program, access and use of all shipboard facilities, a variety of kinds of music from the bands, orchestras and piano bar, choice of three pools, duty-free shopping on board, briefings on each port of call, dozens of activities, use of the library, and first-run movies featured daily. 

    There will be a choice of tours at each port for an extra charge.  One tour will be included in your fare. 

    A down payment of $250 is due by NOVEMBER 20th, so you need to act promptly if you wish to choose from the choice of cabins reserved at the WW group rate.

    "Ow we, ow we baby, won't you let me take you on a sea cruise?
                                            (Frankie Ford, "Sea Cruise").

Additional information is available at :

http://www.webwhispers.org/pages/WWCruise.htm 

Indwelling Prosthesis Leaks

    What can you do if you develop a leak over the weekend in your indwelling prosthesis?  Several members recently asked this question in e-mail to the group.  As we know, indwelling prostheses are inserted by an ENT (ear, nose, and throat MD) or an SLP (speech-language pathologist), and cannot be changed by the wearer.  A leaking prosthesis can be serious since it can constitute a pneumonia risk as liquid or food drips into your trachea and lungs.

    In some cases, an ENT may be available on some basis over the weekend or would have another doctor covering for him or her.  But this is not always the case.  You should take the time to find out if your ENT or SLP can help you on a weekend in case you do have a leak.  Waiting until you have such an emergency to get the answer to this question can leave you scrambling to find out what to do as the e-mails demonstrated. 

    As SLP Carla Gress suggests, " . . . if you notice leakage starting on Tuesday, don't wait until Friday 5:00 PM before a holiday weekend to contact the medical professional and expect them to scramble to help you.  There is always a tendency to 'wait and see' if it gets better on its own, or if you can stretch it just a few days more.  But that is really inconsiderate, and will not assist you in getting the care that you need.  The reality is that most leaks require 'urgent' care, but do not constitute an 'emergency' (life and death), and prompt attention by the patient will solve most problems."

    If you do get a leak in an indwelling prosthesis the first question which might be helpful to answer is whether the leak is coming around the prosthesis or through it.  You can probably determine where the leak is occurring by drinking some water and watching in the mirror to see if it is coming through or around it.  If you cannot tell, you might try sipping coffee or a liquid that has color to help identify which it is.  But be sure to try and cough any leaks back up if it is something other than clean water to avoid the pneumonia risk.

    Leaks around an indwelling prosthesis require professional attention.  There is nothing that the laryngectomee can do in this case except try to keep liquids or other material from dropping down into the lungs until he or she can see the clinician. 

    A leak which is coming through the prosthesis can often be stopped by cleaning it with a flushing pipet (or homemade pipet tipped syringe) and brush.  Frequently, the problem is a tiny piece of food which is holding the valve open on the inside and permitting the leak.  A quick, gentle cleaning can often solve the problem.

    Standard flushing pipets are available from several suppliers.  Below is a graphic of the combination pipet tip and syringe many of us make and use.



    As we know, the primary reason for leaking prostheses is the growth of yeast (candida) around the valve so that it cannot close properly.  If you have Nystatin or other anti-fungal and use it as directed you can prevent many leaks in the first place.

    The best solution for a leak through an indwelling prosthesis is to have a valved or plug insert on hand.  They are available by prescription only, so you must request one from your clinician.  Many clinicians see so few laryngectomees that they are unaware of the various supplies which are available and you might consider bringing your vendor catalog with you when you discuss this with them.  The plug is used temporarally until you can obtain professional help. Having a backup communication method such as an artificial larynx is also a good idea for any problems with a prosthesis.

    The valved insert from Inhealth fits prostheses sizes 8 mm (1.6), through 25 mm (3.3).  The one-way flapper valve in it allows you to continue to speak while stopping the leak.  A plain plug model is available for the shortest prosthesis, the 6 mm (1.4), since that length is too short to accommodate a valve.  A strap goes around the neck to secure either one. You can get more information about these Inhealth plugs at :

http://inhealth.com/featuredproductindex.htm 

Provox also makes a non-valved plug. It can be seen at : 

http://www.atosmedical.com/product/manual/provplug/plug.htm 

    Some laryngectomees who do not have the plug use a cotton swab while they eat or drink to temporarily block leakage.  Until the prosthesis can be changed you may also benefit from drinking liquids with meals instead of separately.  It also helps to swallow slowly and carefully rather than to "gulp" or swallow food forcibly, particularly if the leak is around the prosthesis and neither the plug nor cotton swab would help.

    Certainly where a laryngectomee has a choice between wearing the indwelling prosthesis versus the kind you change yourself, the problem of an untimely leak and access to professional help should be considered in making the decision.  Of course many laryngectomees must wear the indwelling type because they are unable to insert and remove a prosthesis on their own.

    Finding a knowledgeable, as well as available, speech-language pathologist and ENT is always important to help cope with problems whenever they occur.

    (Thanks to SLPs Nancy Blair, Carla Gress, Paxton Oliver, and Brian Shute for contributing ideas and editorial suggestions.)

T-Shirt to Stoma Cover Conversion

    For those with some sewing skills, converting an old favorite (or even new) t-shirt into a stoma cover is not particularly difficult. 

    The process begins by cutting the collar downwards all the way down the back of the shirt and through the bottom hem.  At about 3 inches down from the collar ends, cut the fabric at right angles for a length of about five inches, and again at right angles down the front of the shirt through the bottom hem.  Cut the remaining material off at about 6 1/2 inches below the front of the collar at right angles to the vertical cuts. 

    Fold the cut collar ends over about an inch with the edges on the inside of the shirt. Use a zigzag stitch to sew along the cut edges.  Sew a 2 inch strip of velcro, hooks side up, on the outside of the collar end; and a 2  inch strip of the loops part of the velcro on the inside of the other collar end.  (You want the hooks side on the outside so it does not irritate the skin.)  Finish by sewing the edges of the stoma collar to keep it from fraying.

    One prominant SLP noted that anyone who has done laundry before and cleaned out the drier lint filter can attest that cotton and other fabrics shed fibers.  There can be quite a few fibers which can come from even a small load of washable cottons.  With this in mind, it would be best to wear your homemade cotton stoma cover on top of a foam filter (or HME) to keep fibers out of your stoma. 

    Still another option to that is to put a partial lining on the reverse side of the cover.  For this you should use a porous fabric which does not shed much, if any, such as chaffon-type synthetic fabrics; or the kind of fabric used in bathing suit linings.  Just cut a 4 or 5 inch piece of this material (you might double this size and fold it over for additional protection) hem it all around, and sew it to the top on the inside of the cover at the collar hem so that it will be centered over the stoma when worn.  It only needs to be sewn at the top edge. 

    The pattern graphic is not drawn to scale.  This pattern shown can also be used to make a stoma cover from scratch.  You may also have a favorite stoma cover which you can use as a pattern for making your own. Happy sewing.

    (Thanks to Pat Sanders for contributing the stoma cover made by volunteers for laryngectomees in her community, and to Patty Jones for contributing some of the sewing directions). Pat can be reached at Pat@ChoralMusic.com , and Patty at NotSoSilentLady@aol.com 



by Judy Greiwe (jgreiwe@iquest.net

Welcome New Members 

We welcome the 13 new members who joined us in October:

John Backlund Jr.
Sussex, WI. 
muskoy@execpc.com 
Phil Barnes
Medina, Ohio
barnes624@aol.com
Edward Bell
Berkley, Michigan. 
eabell67@hotmail.com
Cathy Benedict
Tulsa, Oklahoma
Catbene@aol.com
Larry Hammer, SLP
Santa Rosa, CA
LDHOcean@aol.com
Margaret Hayes
Philadelphia, PA
maggymaybunny@aol.com
Dick King
Concord, NH
REK6910@aol.com
Alexander Koukly
Boynton Beach, FL
akoukly@yahoo.com
Paul A. McGreevy
New Springfield, OH
Ranger35841@hotmail.com
Dr. Joel A. Sercarz
Los Angeles, CA
jsercarz@ucla.edu
William K. Snowden
Jacksonville, AL
w.ksnowden@gateway.net  
Edward J. Stubenbordt 
Springtown, TX
EDLASTUBENBORDT@aol.com 
  Nancy Trunk
Cherryfield, Maine
elizbeth@midmaine.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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