WebWhispers Journal

Internet Laryngectomee Support
July 2000

Join us in Nashville!

    The 49th International Association of Laryngectomees Annual Meeting and Voice Institute is fast approaching. And our WebWhispers group will be well represented in Nashville with close to 140 members so far indicating they will be in attendance. WebWhispers is a member club and has eight voting Delegates to the IAL.

    Dr. Ed Stone of Vanderbilt University is the Director of the Voice Institute and he has lined up some of the most knowledgeable ENTs and SLPs in the country to bring their expertise to the laryngectomees from all over the world who come to Nashville. Some of the featured speakers include Ron Hamaker, MD, who will be addressing both the Voice Institute and Annual Meeting. Dr. Hamaker is a colleague of Dr. Eric Blom, co-inventor of the TEP prosthesis, who will also attend and speak on Wednesday afternoon.

    The Voice Institute runs from Tuesday through Saturday, while the Annual Meeting begins on Thursday and ends with the banquet/dance on Saturday night. Those attending the IAL A.M. are invited to sit in as observers on any of the activities of the V.I. as space permits. Other prominent VI speakers include SLPs Shirley Salmon, Jim Shanks, Paula Sullivan, and Dan Kelly.

    The IAL A.M. also features special sessions on training hospital visitors, tobacco education, Medicare issues, voice restoration practices in Sweden and Russia, building a successful laryngectomee support club, and others. Our founder and WebMaster Dutch Helms will also address the IAL A.M. on Friday afternoon. As always, traditional IAL activities include opportunities for speech improvement for all, the Annual Meeting Reception on Wednesday night, Keynote Address, sing-a-long, Fun Show, and banquet/dance.

    Don't forget the WebWhispers banquet on Thursday night. Cocktails at 6:00, with dinner at 7:00.

    Vendors will also be on hand at the convention to demonstrate their wares and services. Come see the newest products and supplies for laryngectomees, and get free samples and literature to take home. If you have a Servox AL, bring it. It will be cleaned and serviced free of charge. Our generous vendors also sponsor coffee breaks and other social functions.

    Join us in Nashville if you can!

(The full schedule of events is available at http://www.larynxlink.com/Nashville/nashville2.htm)

DO Go Near the Water!
By Bob Herbst)

    I live on the water in New Haven, Connecticut, and I also have a cottage on Cape Cod in Massachusetts. My biggest loss as a lary was not being able to swim, or being put in danger by walking on a shaky dock, or getting in an unstable canoe or rowboat.

    My wife and I tried to invent something laryngectomees could use to be comfortable on a lake or in the ocean. We thought about something like a tube with a harness that would keep my stoma way out of the water. We went to Sports Authority (a chain of sporting goods stores) to get ideas, and there hanging on the wall in the fishing department was what we were trying to invent.

    It was a tube covered in a tent-like fabric with a fabric seat like you would put a toddler in and put in a pool. As you step into it you can pull it up to your waist and walk into a lake, or, in my case, the ocean. Once you walk in past your waistline you will float with your entire chest, neck, and head safely above the water. On the left and right sides of the tube are zippered pockets that can hold soda, beer, food, paddle, boat horn, etc. Behind my head is an inflatable pillow that can be blown up or left flat.

    I go way out in the ocean even when it's a little rough. If it's real rough you have to keep your back to the waves until you drift or paddle to shore. I made the mistake of spinning around to look out to sea on a particularly rough day and got a nose and mouthful of water and quick response from my thumb to my stoma. But one arm movement in the water and I was facing shore again. When it's calm and I want to get more of my body in the water I can unsnap the seat flap and drop down with my arms over the sides of the tube and my legs dangling down.

    One of my employees who is an avid fisherman has two of these and uses them to fish in hard-to-get-to streams and rivers. He walks into the water with his lunch and fishing stuff in the pockets and floats downstream to his favorite spots. I love my tube and strongly recommend it to anyone who wants to get safely and happily back into the water.

    Note: We have learned from one another that many laryngectomees swim (with and without the larkel swimming aid or floatation devices), fish, sail and powerboat by taking a few reasonable precautions. (Ed.)

(Bob Herbst can be reached at: bobh@i2sworld.com)

The World is Still a Beautiful Place! (Part 2)
By Barbara Nitschneider

    Going back to teaching after my total laryngectomy and radical neck dissection in June, 1974, was scary. While I had been learning to speak again, I had a leave of absence from my teaching job, but still worked one day a week for the school district collating papers in the basement. It was this contact with the school district that kept them up to date with my progress.

    As I was working there, a principal from another school kept coming down to chat with me. At the time I thought he was just being friendly, but soon found out he was to be the new principal at my school. He followed my progress and, in August of 1975, I was assigned back as a second grade teacher. They didn't ask me if I was ready, they just gave me the assignment. This more than anything told me of their confidence in my ability to return to teaching.

    I realize now that this principal was the key in this decision to let me return to teaching. He proceeded to tell me he had all the faith in the world in me and was sure I would be just fine. At this point, he and my speech pathologist were the only ones who thought I could return successfully to my career. My parents weren't and many of my friends weren't. I knew I could.

    After my first day, and with no problems from either parents or children, I went in to the principal's office and shared my feelings. He said he wasn't surprised, he knew I could do it. And thus began my successful teaching career as a laryngectomee. Unfortunately, this principal passed away from cancer a few years later. I have had two others since who have also been very supportive. I know as a teacher that I have had complaints, but all three principals assured me that they never had any about my voice. Many parents have expressed admiration about the good example I present to their children. I truly believe that children need to see that there are always alternatives and that obstacles can be overcome.

    On the first day of each new school year I explain to the students about my surgery and why I talk as I do. Since I use esophageal speech I explain to them the process and ask them to watch my neck to see the air go down. I explain to them that they will soon get used to it. I ask them to politely ask me to repeat myself if they cannot hear what I have said. I do not tell them about or show them the stoma. That is more information than they need to know. I do tell them that it will sound the same when I laugh, cough, sneeze, or have the hiccups. Many will ask me which it was when they hear me!

    I would not be able to teach without some form of amplification. Over the years, I experimented with many different types. I used the Voicette for many years, until I discovered the Chattervox. It has a wonderful quality, and, because it straps around my waist and can be worn as a headset, my hands are free. This makes the job so much easier than having to use one hand to hold the mike and carry the speaker over my shoulder. I now use both instruments on a daily basis depending on the situation. They are both portable so are great for recess duty, gym, or any situation outside the classroom.

     Teaching continues to be both enjoyable and rewarding. The children give me so much more than I can ever give them. The decision to return to the classroom was one that I have never regretted.

    I continue to ride and jump my horse. After a rough day of teaching, it is great to go out to the barn and enter a whole different world. Riding is a sport, it's great exercise, but most important is the special relationship I have with the animal. I have found that animals don't care about the sound of your voice, they respond to the person inside.

    As a laryngectomee, I have served as President of the Illinois State association, our local club, and on the Board of Directors of the IAL. I am currently serving as Secretary. I served as the public member on the Speech Pathology/Audiology Board of the Illinois Department of Professional Regulation for many years. I have also served on the Rehabilitation Board of the Illinois ACS. I have spoken to nursing groups, doctors, speech pathologists and other groups to tell my story.

     Because my cancer was not a result of smoking, I do not speak to school groups. I have made many pre and post-op visitations and feel I have helped repay and honor those who gave inspiration to me.

     As a result of this whole experience, I believe I have been given a purpose and a responsibility, and that is to provide inspiration and hope to those facing the same adventure. My life had been truly blessed by the wonderful friends I have made.

     Being a laryngectomee can also be frustrating. In the beginning I was just glad to be alive and talking again. Now I am often frustrated by the lack of volume I have, but have learned to adjust and adapt, and be grateful for the esophageal speech that I do have. I also get more and more tired of being asked if I have a cold or being told I sound terrible and how they also sounded terrible the week before with their cold. I know I should be flattered that they think it is only a cold, but often I just want to interact on a daily basis out in the public as a normal person who does not attract attention. I know that will never happen and most days it doesn't bother me. But if I am honest with myself, I know it does.

     WebWhispers has been helpful to me in this. I love hearing how people deal with social situations and don't let what people think bother them. I know I worry too much about what people think. My radical neck dissection bothers me most of all -- it is highly visible to all who look at me -- especially children who look up at me and are always curious. I don't mean to be negative, but if there is a negative side, that is it. I am still me in all ways and find it difficult to be treated differently. I know I am not alone in this. I don't think of myself as a laryngectomee, I think of myself as a person who has had a laryngectomy.

    All in all, my story has been and continues to be a positive one. I was given a challenge and have been able to meet it and grow from it. I have met many wonderful people and wouldn't trade my experiences and what I have learned about myself and other people for the world. And if I can help others as a result -- all the better! And yes, I continue to believe that "The world is still a beautiful place!"

(Barbara Nitschneider can be reached at: Nitsch2@aol.com)

Murray Allan is New WW Vice President

    John Edwards resigned as WW Vice President earlier this month due to other commitments. President Carter Cooper regretfully accepted his resignation. Carter appointed Murray Allan (argus@shaw.ca) to fill out John's term. WW members may remember that Murray was a few votes behind John in the election last fall for vice president, so he was the natural choice. Murray is from British Columbia, Canada, and will join us in Nashville. Welcome aboard, Murray! And many thanks to John Edwards for a job well done.

(Murray Allan can be reached at: argus@shaw.ca)

Place the Face

    Below is a collage of the WW members who have indicated they will be coming to Nashville who also have their photographs on the member pages. (If your photograph is not on the members page, do send a scanned photo to Dutch via e-mail. Or you can mail him a photo, he will scan it and put it on the site, and return the original to you).

How many names can you put with the faces? (Answers are below)

Pinned Yet?

    WebWhispers has a logo membership pin available for sale. The logo was designed by WW member Leonard Librizzi's very talented daughter, Eva Lynn Tomasco. The pins are available for $5 each. Order yours by sending your check to WW treasurer, Terry Duga at 6115 North Park Ave., Indianapolis, Indiana 46220. Be sure to indicate on the check or in the note that the money is for a pin. The pin or pins will be mailed to you, or you can pick them up in Nashville.

Lary Laughs

By Judy Greiwe (jgreiwe@hsonline.net)

Welcome New Members

We welcome 17 new members who joined us in June.

Roger Amell Chandler, Arizona ra1776@attglobal.net	George Cocking Toms River, NJ Jerzgeo@aol.com	Ethel Cook Youngstown, OH gramssix@hotmail.com
Linda Duval Peterborough, NH LDuval@webtv.net	Frida Korenbrot (SLP) Tel Aviv, Israel fridak@zahav.net.il	Hector Maldonado Brooklyn, NY catham1@gateway.net
William "Kent" Melton Wichita Falls, TX KOKAPELI@webtv.net	Walter Nachtigall Nanaimo, BC, Canada wnachtigall@home.com	Charles Oliver New Waterford, OH fourchair@aol.com
William Parks Jr. Durham, NC WPar865292@aol.com	Louise Picco Van Buren, AR Fagansppl@aol.com	William Ruby Westland, MI NRUBY@prodigy.net
William Sharp Georgetown, DE SHARPBNJ@aol.com	Susan Studenec (SLP) St. Petersburg, FL susan.studenec@med.va.gov	Irwin Title Silver Spring, MD/Toronto, Canada ITtitle@cs.com
Gina R. Vess (SLP) Durham, NC gina.vess@duke.edu	Eric E. Williams Forest Ranch, CA whispy35@hotmail.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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