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IALThe International Association of Laryngectomees Vol. 53 No. 4 • November 2008

The 57th Annual Meeting and 48th Voice Institute convened at the end of August in Little Rock, Arkansas. The Meeting was dedicated to the memories of Judy Breckon and Jane Varner; two women who were instrumental in bringing the IAL to Arkansas in 1996 (Judy), and then again in 2008 (Jane). The Annual Meeting and Voice Institute were ably hosted by the members of the Lost Chord Club of Central Arkansas. Lisette and Harvey Black and James and Caroline Kennedy lead the local efforts for their club. The clinical portions of the Voice Institute were held at the University of Arkansas Medical Sciences Hospital. InHealth Technologies and ATOS Medical hosted the Meet and Greet Reception on Wednesday night, and a combined program for the Meeting and Voice Institute began on Thursday morning. Dr. Eric Blom, SLP, gave the keynote address. Titled “30 Years of Inventing Medical Devices to Restore Voice…and Human Dignity,” Dr. Blom reviewed the progress made since the tracheoesophageal puncture technique (TEP) was developed in 1978 including both products and surgical techniques (see page 23). Among his more recent inventions is the creation of an indwelling prosthesis (installed by a clinician) which features two valves. This design is intended to

extend the life of the prosthesis as well as reduce leakage. A talk on thyroid issues was followed by a panel of medical experts who answered questions from the audience. Afterwards a special presentation was given by SLP and laryngectomee Joanne Fenn on “What Makes a Good Clinician and a Good Patient.” Joanne was then surprised with an IAL award for all she has done in the cause of laryngectomee rehabilitation. She was presented with the first “Shirley Salmon Master Clinician Award.” The Annual Meeting and Voice Institute then diverged into two separate programs (but with everything open to all who were interested). One feature of this year’s meeting was a “Town Hall” where the Board of Directors addressed

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Little Rock Rocked!

Newly elected IAL Board of Directors (from left) Tina Long (President), David Blevins, Kay Allison, Joe Marasco, Sheldon Schultz, John E. Ready (Vice President), Terrie Hall (Secretary), Tom Cleveland, Sapp Funderburk (Treasurer), Bob Herbst

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The IAL News is published four times per year by the International Association of Laryngectomees.

The information provided in the IAL News is not intended as a substitute for professional medical help or advice, but only as an aid in understanding problems experienced by laryngectomees and the state of current medical knowledge. A physician or other qualified healthcare provider should always be consulted for any health problem or medical condition.

The IAL does not endorse any treatment or product that may be mentioned in this publication. Please consult your physician and/or speech/language pathologist before using any treatment or product.

The opinions expressed in the IAL News are those of the authors and may not represent the policies of the International Association of Laryngectomees.

As a charitable organization, as described in IRS 501 (c) (3), the International Association of Laryngectomees is eligible to receive tax-deductible contributions in accordance with IRS 170.

IALnewsThe IAL Board of Directors is pleased to announce the appointment of Susan Reeves as the new International Association of Laryngectomees Executive Director. Susan will work on a part time basis and can be contacted through the IAL’s new permanent address and our toll-free phone number (see back page). Susan is a Speech/Language Pathologist and is currently the Clinical Director at the West Texas Rehabilitation Center in San Angelo, Texas. She holds two degrees from Southwest Texas State University. Susan has had an abiding interest in laryngectomee rehabilitation for most of her career. She first attended the IAL’s Voice Institute in Seattle, Washington in 1988. She has worked as the organizer and coordinator of the Concho Valley Lost Chord Club, and worked with the Texas Laryngectomee Association. She also served for a year on the IAL Board of Directors, and has worked as a consultant for laryngectomees in two hospitals. She also served as a consultant to the International Rehabilitation of Laryngectomees in Cologne, Germany, and has helped to establish and lectured at the Mexico Voice Institute. She also served periodically on the IAL’s Voice Institute staff over a 14 year period. Susan was interviewed by the Board of Directors at the Annual Meeting in Little Rock in August and formally selected in September. Among her duties are to plan the Annual Meeting, organize the records of the organization, assist in planning the Voice Institute, respond to all communications, help upgrade the web site, maintain and store the organization’s audio-visual equipment, help identify ways to conserve resources and to find new sources of funding, and others. The Board of Directors is delighted that Susan Reeves has agreed to lend her considerable talents and lifelong dedication to laryngectomees to the continuance of and improvement to the IAL.

IAL Has New Executive Director

any questions or issues brought up by those in attendance. Sessions were offered on almost all issues laryngectomees face: speech improvement with the three major ways of communication, swallowing problems, dental and hearing issues, water safety and activities, sexuality, hospital visitation, and many other topics. The Delegate’s Meeting convened on Saturday morning. In addition to a number of Bylaw amendments being passed (see the Minutes at http://www.larynxlink.com/ial/reports/reports.htm), the following individuals were elected by acclamation: Tina Long, President; John Ready, Vice President; Terrie Hall, Secretary; and Sapp Funderburk, Treasurer. Elected to the IAL Board of Directors were Kay Allison from Michigan, David Blevins from Virginia, Tom Cleveland from Michigan, Bob Herbst from Connecticut, Joe Marasco from Virginia , and Sheldon Shultz from California. Attendance was lower than hoped probably because of the timing before a national holiday, the cost of fuel and the state of the general economy, and other factors. But those in attendance clearly thought that it was a good and valuable

Annual Meeting and Voice Institute, and many plan on returning next year.

Little Rock continued

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An article in WebMD Health News and in Cancer reported that people who breathe burning incense over long periods have an 80% increased risk of developing a number of respiratory cancers even if they never smoked tobacco. The research, carried out with Chinese subjects, showed an increase in the development of squamous cell cancers in the nose, throat and lungs. The risk was considered minimal for those who are exposed to incense on a casual basis, but the findings are particularly important for cultures and individuals that routinely burn incense in their homes.

Incense Linked to Airway Cancers

Notice to IAL Clubs—2009 Dues Invoices for the annual dues for 2009 will be sent out by e-mail about November first to those clubs for which we have e-mail addresses. We will continue to send invoices via the U.S. Postal Service to those clubs for which we have no e-mail address. However, we ask that if the official club contact does not have an e-mail address to please appoint anyone in your club who does to be the receiver of this online invoice who will then pass it to the club officials. Having an e-mail address for each club will also allow the IAL to communicate with clubs between issues of the IAL News as well as save the cost of the mailing. It is urged that all clubs insure that the IAL is aware of any change in their club contact’s e-mail address. You can determine whether your contact information is correct by checking the information on your club here: www.larynxlink.com/Main/clubmap.htm. Please send e-mail address updates to Tom Herring at tomherring@embarqmail.com or ialhqs@larynxlink.com. Thank you for your help.

Order Postcards NowClubs, clinicians, vendors, etc. should order the number of IAL News postcards they think they will need over at least a one year period. Ordering a larger number will save on postage. These new cards should be able to be used indefinitely. These postcards are used to sign up new laryngectomees to get the IAL News and to use if there is any change in address for those already receiving it. When these new cards are received you should discard the old ones since these new cards contain the new permanent IAL address. Place your order by email and state the number you want and the mailing address to which they should be sent to ialhq@larynxlink.com; write us: IAL, 925B Peachtree Street NE Suite 316, Atlanta GA 30309; or phone us at (866) 425-3678 (866-IAL-FORU). Thanks.

ApologiesWe wish to apologize to Griffin Labs and to Servox for errors in this year’s Annual Meeting and Voice Institute program. Griffin Labs was left off the back cover as a Silver Sponsor. And Servox was not listed as an “exhibiting vendor” and not credited with sponsoring Voice Institute coffee breaks. We regret the errors and apologize for the omissions.

CorrectionBecause of a printing error the sources of two graphics on page 15 of the August issue of the IAL News were inadvertently left out of the printed version.

The source of the graphic showing the use of the ultrasound “wand” was West Virginia University. The source of the graphic showing the carotid arteries was Iowa State University.

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Contributing to the IALBy Sapp Funderburk, IAL Treasurer

The International Association of Laryngectomees is a tax-exempt 501 (c) (3) organization; therefore, all donations to the IAL are tax-deductible. Like any organization, we need to have money to get along in this world. Did anyone else hear that prices are going up? Almost everything we

buy has gone up regardless of where it is purchased or whatever the source. This is especially true for the IAL. Everything we buy, from postage to computer supplies, has gone up in price over the last few years. In addition to rising prices the other side of our budget--income--has reacted the other way and gone down. This is somewhat understandable that when times get tough people cut back on donations, travel and entertainment. Companies buy less advertising, go to fewer conventions and cut back on donations; even as the IAL costs continue to rise. The IAL publishes the IAL News four times a year. The last four editions have cost $35,000 to publish and mail out to almost 8,000 addresses. That is a little over $1.00 per copy. Advertising can only pay a small percentage of that amount. While we do not charge for the News we do ask for donations. Anyone who wants to receive the News can have it sent simply by asking. The vast majority of our donations are very small. Donations from just ten individuals make up better than 40% of the donations we have received this past year. It is true that in most organizations 10% of the people do 90% of the work. The difference is that it is more like 2% making donations to the IAL. Those who give $5 per year are a big help; at least they are paying the cost for them to receive the News. There are a few who give $10 a month or $15 a quarter. What is needed is for many people to give $5 a month, $25 a quarter and so on. If only 10% of the people gave $5 a month the News would actually make some money for the IAL. But if that same 10% gave $15 a month it would more than cover the cover the entire basic budget including publishing the News. When we receive donations the money is used for many different purposes. In addition to running our day-to-day operations there are so many worthwhile projects that could use our support. For example, on September 5th there was an hour-long program from Los Angles sponsored and broadcast by the three major television networks. “Stand Up To Cancer” was a major success. In that one weekend the project raised $100 million for cancer research. We were invited by the organizers to have four IAL representatives in the audience. These individuals paid their own way, with the exception that the IAL paid for the t-shirts with our logo that our representatives wore. A reasonable thing to have done would have been to pay their expenses since they were representing the IAL. We were lucky in that two of the people lived in the greater Los Angeles area and the other two were going to be in the area anyway, so the cost to the IAL was almost nothing. The IAL needs to reprint many of our pamphlets and brochures, both to update and correct them, but also to have a supply on hand to give out. Because of a lack of the necessary funds we

cannot do this at this time. Several of the regional laryngectomee organizations have asked for monetary support from the IAL to help their regional meetings and special projects. But, again due to the tight budget, we cannot help at this time. Many members of the Board of the IAL only take part of their per diem, or travel money, for the Interim Meeting and Annual Meeting. Some are able to pay all these costs themselves. Officers and Board members have been recently paying for their travel while representing the IAL at regional meetings. No Board member is paid to work for the IAL. The Board has considered many ways to save money. We have taken a long look at the Executive Director position and, as of the end of September, hired Susan Reeves as ED on a part time basis. The savings for us will be more than 66% of our previous costs by not including payroll taxes, workman’s compensation insurance and office allowance. Members of the Board have taken on many of the tasks formally done by the Executive Director in order to save money. We will probably be having the Interim Meeting via the Internet with web cameras to save the cost of a face-to-face meeting. There has not been a club directory printed this year to save that cost. We recently reduced the per diem from $42 to $35 for official IAL travel to the required biannual meetings. These are just a sample of cost savings we have implemented so far. Over the last few years there has been a decrease in donations to the IAL. I believe that there have been several reasons for this. Included are older laryngectomees dying, people moving and no longer getting the News (which would remind them to send in something), and clubs becoming inactive. These are some of the reasons for the falling donations. The greatest reason, I believe, is that there has been no real effort to ask for the donations. I learned a long time ago “if you don’t ask for it you probably won’t get it.” In order to continue to do all that we do the IAL needs your financial support. Please find a way to give. Almost no amount is too small. Do what you can if it is $5, $10, $100 or $10,000; it is much needed and will be deeply appreciated. There are several ways that you can help by giving your TAX DEDUCTABLE gift to the IAL. The fastest and easiest way is to simply write a check and mail it in. For those of you outside the U.S. please be sure your donation is in U.S. funds. The bank charges us to convert foreign currency into U.S. dollars. Most banks can set it up so that a check is sent to us automatically each month or quarter. If you go to the IAL web site (www.larynxlink.com) there is a link to donate. This goes through PayPal, a secure web site, and you don’t have to have an account with them. Just fill out the information along with your credit or debit card information and everything will be taken care of. If you don’t want to go through PayPal simply write to us or e-mail me (csfund@bellsouth.net) giving your card number, whose name that the card is in, expiration date and three digit security code on the reverse. If none of these is acceptable you can call me (864-268-9719), at a reasonable hour of the day, and give me the information on the phone.

Thank you for remembering the IAL.IAL Web Site: www.larynxlink.comMailing Address: IAL, 925B Peachtree St. NE, Suite 316, Atlanta, GA 30309My home phone number: 864-268-9719

Danny Viveiros is a laryngectomee, and a surfer. His family lived just two blocks from the beach when he was growing up and his father taught him how to surf at the age of eight. He came to love it.

But when he developed larynx cancer in his early 40s he was told his days of surfing were over. He freely admits that he became depressed after the surgery, had feelings of self-pity and guilt, and could no longer tolerate even looking at the ocean. Friends took him fishing, but he had become afraid of the ocean and the thought of water rushing into his lungs.

But his dreams continued to be filled with images of him surfing again. He would wake up feeling that he just had to find a way. He couldn’t let it go. He remembers saying, “I knew I had to do something or I’d bomb. I couldn’t function. I was dying to get back in the water.”

What he did in 1987 just six months after his surgery was to purchase a “Larkel” (no longer available for sale in the U.S.). It is a device that consists of a mouthpiece that connects with a tube that fits into the stoma. Inflating a rubber ring that goes inside the stoma creates an airtight seal.

But the Larkel had not been designed for the power of a pounding ocean surf and he had to abandon it. Not one to quit on his dream of returning to the water, Danny set about to design his own device. Through trial and error he combined pieces of a diver’s wetsuit, mouthpiece and tubing from scuba gear, valves and rubber tubing. Although it shares some resemblance to the Larkel, a major difference is the additional support provided by the part made from a wetsuit. He reported that it was a little painful to use at first, but has gotten used to it.

The device has only failed him once when he wiped out on a particularly large wave. It knocked the device off and him onto the rocks. Danny, who never surfs alone for

safety reasons, had his friend to help him get the water out of his lungs. He said the experience made him not afraid to drown. “You just sort of go numb and relaxed. The idea of drowning used to worry me just thinking about it.”

Danny hopes his experiences can help others to make the decision to have the surgery and believe they can recover to do the things they love. He said, “You can adapt and have a normal life.”

Danny stated that “I’ve been in about four or five (surfing) contests since the operation, and they (his family) always come and yell and scream and embarrass me. I fee lucky in a way. I’m not a religious person, but I feel like I’ve been given a new life.”

(Compiled from stories from the Los Angeles Times and Union-Tribune. Photos from Danny Viveiros, the Times and Union-Tribune).

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Some new uses have been found for a substance that has previously been used for a number of cosmetic surgical procedures. One of these is Cymetra. It is an injectable natural material and has the benefit of rarely being rejected by the body as a foreign substance. Used cosmetically as wrinkle filler and to enhance lips, it is now being used for several applications in laryngectomees.

One use is to inject into the stoma area to even out an irregular shape. This may permit some laryngectomees to use a hands-free valve with a Barton/Mayo Button (available from InHealth) or ATOS lary tube. Using the hands-free valve in a lary tube or button requires that there be a good airtight seal around the stoma.

There is no guarantee that having a smoother stoma surface will permit the use of a hands-free valve with a lary tube or button (and thereby avoid having to use the glued on housing). The amount of air pressure each individual needs to get voice is also a major factor in whether this will work.

Research conducted at the University of Pennsylvania Medical School also demonstrated that Cymetra can be injected into the tissue around a TEP puncture in order to

help decrease leaking problems. Leaks around the prosthesis are typically caused by tissue around the puncture that is not healthy and firmly gripping the prosthesis to keep the seal. In the study, the injections were successful in four out of five

patients.Still another use for Cymetra

is for those who have had a cancer removed from a vocal cord leaving an uneven surface on one or both vocal cords. The injection can even that out and change a breathy sounding voice to a more normal sounding one.

As with so many things, there are a number of alternative procedures and materials that can be used for these purposes and there are advantages and disadvantages to each. Your medical professionals can help you decide if the

procedure is desirable in your case, and the best way to go about accomplishing it.

(Note: an article which explains how some laryngectomees can use a hands-free valve without using the glued on housing can be found here:

http://www.webwhispers.org/news/aug2002.htm)

Cosmetic Surgerymaterial helpful to laryngectomees

Voice choice and Quality of lifeIs the quality of life a laryngectomee has after surgery influenced by the type of speech they use? This was the question research carried out at the University of Plymouth in Great Britain attempted to answer. The study surveyed 226 laryngectomees (147 TEP speakers, 42 traditional esophageal, and 37 electro-larynx). While the measured quality of life was lower for laryngectomees than the general population, there were no significant differences among those who used traditional esophageal, TEP or the electronic artificial larynx. The researcher who conducted the study had assumed before the study began that those using the TEP (which he stated produced a “better voice quality”) would have a higher satisfaction level and higher measured quality of life.

Please support our advertisers • They support the IAL and help keep The IAL News coming to you.

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By Tina Long, IAL President

During the week of September 14th, my sister and I traveled to Arizona. While we got there and were heading to claim our baggage I noticed I was having a difficult time catching my breath. I found this peculiar because I walk dogs for a living. Once we arrived at baggage claim I remembered I was at a much higher elevation. Georgia’s elevation, where I live, is around 3,500 to 4,787 feet, and Arizona is 7,000 to 12,000 feet. That’s a huge difference. So I figured I would acclimate in a day or two. Two days after our arrival we made our way up to Jerome, Arizona, which was even higher than Phoenix, and my breathing was not getting better. By Wednesday, I started coughing more then usual and noticed spots of red. Then I remembered that Arizona was also very very dry. “Ok” I told myself. “I need to drink more water and take longer showers, keep my HME filter moist, keep a damp cloth over my stoma as much as possible and find some saline solution. I can do that.” By Thursday evening I was miserable. I wasn’t really hungry because I’d consumed more water then most people do in a week. I was coughing up a lot of blood, and my ankles and eyes were so swollen I looked like I was going to pop, and I had to ask my sister to carry my luggage. By bedtime on Thursday, I was so angry! I was angry that I was a laryngectomee and having to deal with all these issues! Didn’t I suffer enough ten years ago after I had the surgery? Didn’t I suffer enough by having to learn to speak a new way, and suffer the humiliation out in public when some people stare at me like I’m something from outer space? I was mad at G-d, myself, cancer, cigarettes and even my sister who slept so peacefully, breathing normally and not coughing. Her pajama top wasn’t all wet from a wet wash cloth being used to ease the drying out of her trachea, and she could walk at a normal pace and even carry her own luggage! I lay in bed and continued to complain, kvetch (Yiddish term for chronic complaining), and completely feeling sorry for myself. When I woke up Friday morning and looked in the mirror I noticed my eyes were even more swollen. I was still coughing up blood, and, along with very swollen ankles and hands, I had also developed a cold sore and it appeared I was also getting a sty in my left eye. Well, there I was, looking like a total freak. My sister did shower me with a lot of sympathy and TLC, but she and I both had to laugh at the monstrosity I had become. Being the forever optimist and one to always look for “lessons

to be learned,” I finally decided that instead of my complaining and kvetching I should have been counting my blessings. So I tried and I did come up with a list. And believe it or not the cold sore went away pretty quickly and the sty never really developed. Plus, I did acclimate a little better to the elevation and, with all the water, saline solution and moisture, the bleeding finally stopped. But I still traveled around Arizona puffed up and looking like the Michelin Lady. Never in my wildest dreams did I think I would miss the Georgia humidity. My experience made me think about my anger and what helped me deal with it these last ten years. Like most all of us, I suffered a huge loss and had to recover from what felt for me like total hell. Head and neck cancer does cause both physical and emotional damage. Our type of cancer, along with the surgery that saved our lives, left us with a more noticeable physical change than a person who suffered with breast cancer or prostrate cancer. We sound different and look different. Many of us were left with some really hard life changes. Some of us can’t swallow, taste or smell anything. I would love to step in my shower and turn my face directly under the shower like I used to. Many of us would like to sing again in our choir or in a band. So many things we have learned to do without, because we chose to fight our battle and live. Now don’t get me wrong. I am a positive person who is always looking for that rainbow, but I still have days when I do feel angry about my situation. I really am frustrated when I call a business and an automated voice starts asking me questions, and I know there is no use trying to respond, because I know I will never make myself understood by a computer. I get embarrassed when I cough in a store and scare a little boy so badly he runs to hide behind his mother. The key is that I do allow myself to get angry and lament my loss. I do have obstacles I had to learn to work through and live with. I have every right to honor my feelings and anger. BUT, then I always find a way to count my blessings. There are times it’s more difficult to come up with a list, but I always know I can start with my top three: my husband, my daughter and my son. They are the reasons I chose to fight the battle so I could live.

By Carla Gress, Sc.D., SLP-CCC

It is difficult for many laryngectomees to find a Speech/Language Pathologist (SLP) who is fully knowledgeable and experienced in dealing with laryngectomees and their needs. A major factor is the training SLPs receive.

Regarding the curriculum of colleges and universities who offer degrees in Communication Disorders/ Speech-Language Pathology: In the US, it is highly uncommon for there to be any organized coursework in head and neck cancer or laryngectomy speech rehabilitation. I did an informal survey a few years back, and I could only find a handful of programs that offered a dedicated course in this topic. In some places you might find an elective course, or “independent study,” but nothing required.

Most often, the topic of laryngectomy comprises one or two lectures in a course on Voice Disorders, which emphasizes benign (not caused by cancer and surgery) voice problems. Masters’ students who do a clinical practicum at a hospital may have some exposure to laryngectomees, or assist with their care, but there are no requirements for this.

The SLP’s training program must encompass a wide variety of topics, including, but not limited to, normal speech anatomy and physiology, hearing and deafness, childhood speech and language development, articulation disorders, stuttering, mental retardation, autism, learning disabilities, neurologic disorders such as occur after stroke, head injury, Parkinson’s Disease, dementia, etc; voice disorders, swallowing disorders, learning theory, therapeutic methods, and more recently, literacy. It is sad to say, but most often the specialized knowledge that an SLP requires to assist a laryngectomee comes through continuing education programs or on-the-job experience, hopefully with a good mentor.

Laryngectomees often represent a very small portion of an SLP’s caseload, unless it is a large hospital or cancer center, so the tendency will be for the hospital to invest their continuing

education dollars in sending the SLP to conferences on swallowing problems, or other more commonly encountered disorders.

What that means for the average laryngectomee is that you are very blessed if you have an SLP who has specialized training and experience in working with head and neck cancer. You are lucky indeed if you can find someone like this at a local community hospital; usually they are concentrated at the university teaching hospitals and cancer centers. It is unfortunate that this is the current state of affairs, but that is the reality.

There are a number of continuing education opportunities for SLPs (and MDs) offered around the country to address this issue, each with a specific purpose. Some courses focus entirely on TE speech with a prosthesis, others include ES (traditional esophageal speech), AL (electronic artificial larynx), and laryngectomy-related topics such as pulmonary rehabilitation and quality of life issues. Some of these are sponsored by vendors (and participants need to be certain that they are getting objective information and not “commercials”), others are sponsored by professional associations, while still others are sponsored through laryngectomy organizations such as local or state clubs, and the IAL’s yearly Voice Institute.

The situation is better than it was ten years ago, but there is much room for improvement when it comes to having a well-developed workforce capable of meeting the needs of laryngectomees. I encourage each of you to support your local SLP in getting additional training. I know that some clubs sponsor their SLP’s travel to continuing education programs, and that kind of team effort is commendable.

(Dr. Gress lives with her family in Charlottesville, Virginia)

Why is it so hard to find a well-qualified speech therapist?

ACS establishes Caregivers Section

The American Cancer Society has recently established a special section on their web site specifically for caregivers. It features topics of value to caregivers on coping, connecting with other caregivers, caring for the patient, and other topics of interest. It can be accessed at this web address:http://www.cancer.org/docroot/HOME/cgv/cgv_0.asp

www.larynxlink.com

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The average laryngectomee becomes one sometime after his or her 60th birthday. But there have always been the young ones. One of these is Paul Streble. Paul became a laryngectomee at the age of six.

When Paul was going to bed after attending his very first day of elementary school in 1959 he spoke what turned out to be his last words with his original voice when he said, “Good night, Mom. I love you.”

A trip to the hospital resulted in an emergency tracheotomy that provided him the air he was struggling for. When he woke up he could not speak. A biopsy revealed that he had an unusual form of cancer, rhabdomyosarcomas. With a fatality rate of over 50%, his was the only case at the time of its being located in the larynx. His early symptoms of being short of breath had been misdiagnosed as “the worst case of asthma” the doctor had ever seen. His local doctor said that there was nothing he could do about the cancer.

But his doctor did mention the names of two other MDs who might be able to help. A plane ride provided by the Kentucky Air National Guard brought him to Chicago to see a prominent specialist, Dr. Paul Holinger. Surgery was performed and his larynx was removed. But nine months later a lump appeared on Paul’s neck.

Dr. Holinger believed that more surgery was too dangerous so he referred him to the University of Illinois Research Hospital and to radiologist Dr. Edwin Liebner. Dr. Liebner’s initial reaction was that there was nothing he could do for Paul since the cancer was a recurrence, was advanced

and was of a particularly aggressive type. But he relented and decided on a course of chemotherapy and radiation. The chemotherapy caused Paul to lose all of his hair, but ultimately the radiation treatments produced positive results. Paul was a quick study in learning traditional esophageal speech from his teacher, Hazel Waldron, who was active with the IAL. He was anxious to learn so that he could return to school.

His hospital stay had lasted three months and, while his mother stayed in Chicago and his father visited on the weekends, he very much missed his three sisters, brother and extended family.

Paul, is currently an Indiana resident and recently retired as a graphic artist. He is a dealer in first edition books and stays busy traveling, exercising, and practicing his photography skills. He is engaged to his “beautiful princess,” Gemma Maestrado, whom he met while traveling in the Philippines.

Paul hopes that his story might bring strength and hope to others struggling with cancer.

While it is more of a booklet than a book (at 50 pages and generous spacing), his story is a quick read and packed with lots of faith and emotion. Hello Cancer. Remember Me? is available for $14.95 from Publish America at http://publishamerica.com or PublishAmerica, P.O. Box 151, Frederick, MD 21705.

Paul Streble and “Princess” Gemma

Lary writes his story

Paul with teacherHazel Waldron

Over the decade I have been a laryngectomee I have periodically heard someone ask the question, “What does the IAL do for me?” There have been a number of attempts made over the years by those doing the work of the IAL to try and answer that question. But by asking it the questioner is really saying that they don’t believe the IAL is doing anything of value to them personally. Obviously, if you need to ask the question and the answer is not already apparent, you are questioning the need for the organization, at least for you as an individual. I finally decided that the problem is in the wording of the question. The better question and one that might be easier to answer is “What does the IAL do for our laryngectomee community?”

The three major functions of the IAL are to put on an Annual Meeting, a Voice Institute and to publish the IAL News. If you have never attended an Annual Meeting and do not think you ever will, never needed or wanted to attend a Voice Institute to get help or to learn more, and do not feel there is a need for this publication, then the IAL is NOT doing anything of particular value for you as an individual.

But as I have previously written in this space, I believe that laryngectomees have a duty to help each other. The practical reason is that there are so few of us and there has never been a time when other institutions, such as the medical establishment, have been able to satisfactorily meet all of our needs. No one else has put on annual meetings where laryngectomees can come, learn, get help, and socialize with one another. No one else has put on the kind of quality comprehensive voice institute the IAL does. We, as a community, needed and still need these things, so we created an organization capable of providing them.

Since it was created and for more than 45 years, the American Cancer Society provided funding and organizational support for the IAL. When that relationship ended ten years

ago the organization faced the question of whether it could raise its own money and provide its own governance. Although it was not at all clear from the beginning that the IAL could survive on its own, it managed to do that for almost all of the decade since it became independent.

But the future of the IAL is now in doubt, at least in the form it has been for the last half century. And the question our laryngectomee community must answer is whether the services offered by the IAL are still needed, and whether our

community will support the organization. The IAL is not in eminent danger of going broke. But to continue doing almost all it has done in the past it has had to spend its “reserve” funds which have consisted largely of money bequeathed to the IAL through the wills of deceased laryngectomees. And the interest from those reserves was a significant source of income to the organization. Recent downturns in the stock market has also not helped. Although the IAL Board of Directors is looking at every way to save money and to raise more, if the current levels of spending remain about the same

the IAL will be broke in about eight years or so. This is unacceptable to me. I believe that the IAL provides

unique services to my fellow laryngectomees and that we, as a community, will be the poorer if it no longer exists.

So my personal decision is that I will do my part to see that the IAL survives. In addition to looking for ways to save money and to find new sources of income as a member of the Board of Directors, my personal choice is to contribute $10 a month to the IAL. I invite you to join me. If just 20% of those reading this do the same, the IAL’s financial problems are solved. You can make a single donation or easy monthly payment by using the information on our web site at www.larynxlink.com, mailing a check to IAL, 925B Peachtree St. NE, Suite 316, Atlanta GA 30309, or phoning IAL Treasurer Sapp Funderburk at 864-268-9719.

Supporting the IALBy David Blevins, Editor IAL News

Gilbert M. Wright is credited with inventing the first neck-type electronic artificial larynx in 1942. According to the available research, it was initially designed for use in creating sound effects.

Wright’s AL used a piston to strike a hard membrane much as today’s designs do. The sound effects technician would hold the device against the neck and make various sound effects. One source wrote that Wright’s Sonovox “was used in animated films to give human-like qualities to trains, steamboats, and airplanes.” One famous use was to make the train “speak” in Walt Disney’s “Dumbo” animated film.

One researcher explained that Wright developed a special “Sonovox” for laryngectomees at the National Hospital for Speech Disorders in New York. His AL included a separate and detached battery pack. This design was turned over to the Aurex Corporation and manufactured for almost 50 years.

According to another researcher, Dr. Brian Shute, SLP, it

was sold as the “Aurex Neovox” before the company eventually went out of business. The Neovox instruction sheet included information that the unit could be converted into an intra-oral device with the addition of an accessory. The accessory was a rubber chair or crutch end with a hole in the bottom and a dental suction device inserted. It was placed on the top of the AL much as AL intra-oral converters are today. One of the researchers, Dr. Eric Blom, stated his belief that the intraoral adaptor offered “good sound production.”

Those with computer access can hear the use of a “Sonovox” in music in a film starring the Kay Kyser Band in a 1940 film, “You’ll Find Out” here: http://images.google.com/imgres?imgurl=http://www.isntlifeterrible.com/uploaded_images/goodhumorlc4-725606.jpg&imgrefurl=http://www.isntlifeterrible.com/labels/Sonovox.html&h=364&w=462&sz=32&hl=en&start=2&usg=__O205Iq7pzGZfiBzEiZXUF-21FnE=&tbnid=vRbYcsci2

The 2009 IAL Annual Meeting and Voice Institute will be held in San Mateo, California, on June 25-27, 2009. Those attending the Voice Institute come will come one day earlier on the 24th.

San Mateo is located just south of San Francisco, and those who fly in will be coming into the San Francisco International Airport. The Headquarters hotel is the San Mateo Marriott which is located just seven miles south of the airport. The hotel is also less than 20 miles from San Francisco itself. So many who attend will come early or leave late in order to take in the sites of a city many world travelers consider to be one of the most beautiful and interesting in the world—San Francisco.

The clinical portions of the Voice Institute will be conducted at Stanford University which is located in Stanford just south of San Mateo.

A most unusual aspect for 2009 is the number of clubs that are sponsoring the AM/VI. Sponsoring clubs are the San Francisco NU Voice Club, San Mateo Lost Chord Club, Santa Clara Lost Chord Club, Marin NU Voice Club, Santa Rosa NU Voice Club, and the 49er Lost Chord Club of Sacramento The San Francisco NU Voice Club President, John Ready, was instrumental in working with the others in bringing the IAL to Northern California. He and others have actually been working for a number of years to make this happen. Thank you, John, for your work in bringing us to this great location.

The winter issue of the IAL News will contain more detail. But in the meantime and for now, be sure to mark your calendars to join us for a fabulous learning and social occasion in beautiful Northern California!

California Here We Come!

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“He’s Making a List, and …”

Meet the new Webmaster

IAL Board of Directors member Tom Herring has been “making a list and checking it twice.” It has nothing to do with who’s been “naughty or nice,” it is more than one list, and he checks them many more times than just twice.

Tom has been very busy over at least the last nine months doing the unsung and tedious work of redesigning and putting our various databases into more useable forms, as well as doing the never-ending work needed to keep them current. Among these important lists is the mailing list we use to send this newsletter.

Tom converted the mailing list to the Access software system for both domestic addresses and those outside the U.S. This system is a standard one used in the publication and mailing businesses. He consequently found over 300 duplicate names and addresses, so those were eliminated and thereby saving postage.

The list of over 8000 addresses also was checked against the U.S. Postal Service system to detect whether the addresses were valid ones or not. All of the addresses had to be edited for the new format required by the Postal System so that they are machine readable, which means, among other things, that no punctuation is allowed in the addresses other than the dash used if all of the Zip code is used (five plus four). Addresses also had to be street addresses or valid P.O. boxes.

Also among the most important databases is our club database. Tom has worked on identifying clubs which are still active as well as those which no longer exist, and working to make sure the contact information is accurate. The IAL Board is also considering whether it ought to try and identify and list every known laryngectomee support club whether it is an IAL member or not. The reason is that we want anyone looking for a support club to find one regardless of the affiliation of the club.

Tom has also been working with our new webmaster, Ron LeClair, on revisions of the web site. Particularly important in this work is to make sure that our club listing is up to date so

that anyone looking for a laryngectomee support club in their area can locate one and make contact.

Please check the listing for your club to make sure the information is correct. You can check it here: http://www.larynxlink.com/Main/clubmap.htm. If it needs revising, please contact Tom via the IAL e-mail site: ialhq@larynxlink.com or tomherring@embarqmail.com, write him:

Tom Herring, 2597 Penngate Drive, Sherrills Ford NC 28673-9127, or give him a call at 828-478-9705. Thanks to Tom and you for doing your part in keeping us in touch.

The IAL Board is pleased to announce that we have a new webmaster for our web site. Ron LeClair has been involved in the computer industry for over 25 years including as a software developer. Ron stated “I have kept my eye on

the web and web companies since the mid 90’s. It was an interesting technology to watch emerge and then grow both web-wise and stock-wise. I say stock-wise because I bought shares of Netscape stock when it would rise and fall over $20 per share in a single day. What a nerve-racking roller coaster that was.

Not long after I jumped off the Netscape ride, a friend approached me to put together a fantasy football web site with him for his league. He and I both had zero knowledge of web development back in 1996, but we learned in a hurry and had his league up and running in a few weeks. We continued to learn about the world of web development that was very primitive at that time, but it allowed me to get in on the ground floor.

Soon I was the 90’s and 00’s version of the guy who had a pickup truck that everyone wanted to borrow. A friend in Michigan owned a bar and asked me about a site and from there on in, it was one web site after another.

Today, web sites have so many different technologies available to developers that it has been tough keeping up with the changes. I know we can put some of that new technology to work on the IAL web site and incorporate a lot of the ideas that both the Board of Directors and interested individuals have. It will be challenging as the web site has a lot of content, but I look forward to the challenges it presents.”

One thing Ron is working on is to simplify the existing web site so that those in the IAL with little knowledge about web design and maintenance can update it. In this way, Ron hopes to work his way out of a job as a means of saving the IAL the cost of a web master.

Ron has been busy for some time improving the IAL web site. You can see for yourself at: http://www.larynxlink.com.

There are not many laryngectomees to begin with. There are only about 55,000 to 60,000 of us in the U.S., and of this number, only a tiny number must be on supplemental oxygen.

But if you are one of those few, you may already know Don Layton of the Inland Empire Nu Voices Association in Riverside, California.

Don became interested in improving stoma covers for those on supplemental oxygen while in the hospital in 1998. An insect managed to get past the large plastic oxygen mask and into his stoma. Later Don and his son figured out how to attach a mesh netting material on the underside of a cloth stoma cover that would hold a nasal cannula or similar device

where the oxygen would come out the tube and into the stoma. This delivers oxygen to the stoma, but in a very inconspicuous way since the oxygen tube is threaded under clothing.

Don found out something about the laws of supply and demand when he could not find a manufacturer for his stoma covers. The market is just too small for it to be profitable for a manufacturer. So Don makes them for anyone upon request. He even will make the first one for you for free since he wants to get the dimensions right and a perfect fit before charging for them. He needs your neck size and method you use to speak since the mesh is sewn into the cover low enough that it does not interfere with occluding your stoma for TEP speakers.

You can contact Don at nuvoiceclub@pacbell.net, mallard7@pacbell.net or 4152 Locust Street, Riverside, CA 92501 (951-782-9833).

On Supplemental Oxygen?

Don Layton

Back side of stoma cover

Enjoy Dusty Hobbies?Do you enjoy working with any hobby which produces lots of dust? Then you might be interested in Lanny Keithley’s suggestion for a pretty serious respirator—the Triton Powered Respirator (Model # PRA001). Powered by rechargeable batteries (which work for about four hours per change), the hood portion and full coverage is what makes it work well for laryngectomees. Filtered air is pumped from the battery and filter unit (which is worn on the waste) and into the helmet. It is appropriate for use with woodworking, metal work and welding. It is not designed to protect the wearer from chemical vapors or other gases.

The respirator is available from a number of dealers. Those with computer access can find a dealer here: http://www.triton.com.au/product.php?id=29, or call their toll-free number in the U.S. 1-888-874-8661.

www.larynxlink.com

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There was an interesting exchange of e-mails recently on the WebWhispers web site that began with this e-mail to the group:

“Hi all webbies,I would like to know how many people still socialize after having their laryngectomies. I used to love meeting people and socializing a lot before becoming a lary. (Please don’t get me wrong, I am not ashamed of what has happened to me). I still live life very well, but I find going out for dinner with people pretty hard going. I might cough, or have food get stuck, or lose my ES voice during the night out and be wishing I was back in the house. I had my operation 7 years ago so have had plenty of time to get used to being how I am, My wife says that I shouldn’t be so sensitive. Am I the odd one out? I would love to hear some of your feelings on the subject as I think only us larys know how we feel.” The e-mail sparked many replies. Here are a few of them:“Wow... that is a pretty heavy trip you have laid on yourself. Didn’t you ever cough before surgery in public, didn’t you ever choke on food before you were rebuilt? Didn’t you ever lose your voice before? We have an advantage now, if we lose our voice, we can have an extra in our pockets. Let a non-laryngectomee pull that one off. I think you will find there are many people out there that are extremely interested in us as a group and as individuals. You have ‘been, conquered and returned!’ You are an inspiration to anyone facing their own battles, you are an example of the power of human endurance and an amazing example of faith. Do not sell your audience, friends and acquaintances short. By not being the person you want to be you are stealing who you are, what you can give, and taking away what the world can give you. You are amazing; you are inspirational! Let your life speak!”

—Debi “This topic comes up frequently. It is something we all are faced with in a variety of ways no matter which method of speech we are using. We are social animals, after all, and share a need to be with others; at least occasionally. Some tricks some of us oldsters have learned may help.Suggestions:Keep a running list of quiet restaurants in mind, so when you’re invited out you know which ones work best for you.

Places with too many hard surfaces reverberate the noise, whereas a tablecloth restaurant will buffer some of it. When shown to your table (if you have a choice) take one against the wall or some sort of partition; drapery folds help also. Try to take the seat with your back to the wall, or the corner of the room. This will send your voice out away from the wall or drape. Tables in the center of the commotion will drown your voice out. If you use an EL turning the volume up may not help as much as adjusting to a lower pitch. Volume is not always the solution. When you attend gatherings that get louder as the crowd grows, or the liquor flows, a conversation in another room or hallway will make it much easier to be heard. In the crowd the smile and nod as you listen work very well. It may help you to sort out the folks who hear and those who actually listen. Sometimes it is pretty funny when you discover they’ve been ‘faking it’, and you’re actually having two different conversations. I hope these suggestions help a bit. Do get out and socialize. Try to spend some time with other laryngectomees to see how they handle the social scene.”

—Elizabeth “I stopped at a fine restaurant on my way home from the hospital after my laryngectomy, enjoyed a good meal, and when the owner found out about my surgery being so recent, he sent complimentary desserts. I haven’t looked back since. At that time I was a poor EL speaker due to swelling in my neck and difficulty with (the) oral adapter. I was fortunate not to have needed radiation so I was able to move to (the) TEP 4 months later. My volume isn’t quite as good as I would like in noisy places, but I manage. If someone can’t hear or understand me, I repeat. Didn’t that ever happen to you prior to surgery? We are different, but so is everyone else. Keep that in mind and have fun.”

—Roger

GettinG

out and about A CT scan, which is also called to a “Cat Scan,” is a common imagining procedure used by hospitals to get a look at the insides of our bodies. CT stands for “Computed Tomography.” It uses a series of x-rays directed from many angles to obtain the final images. It provides a better and more detailed look at our insides than traditional two-dimensional x-rays.

There have been a number of articles going back several years concerning the use of CT scanners with cancer patients. In brief, the controversy involves three issues. One is whether the routine use of CT scans such as once a year is a good idea for those at risk for developing cancer. Since most laryngectomees were smokers, we are at greater risk than the general public for the development of a second smoking-related cancer such as lung cancer.

First, an article appeared in a major medical journal that reported on research which indicated that CT scans were capable of detecting lung cancers at a very early stage and were nearly 100% effective in doing so. Since lung cancer is frequently not detected until it has spread, this was good news and seemed to suggest that annual CT scans for people at risk for lung cancer was a good idea.

Then a second article appeared in a major medical journal that raised questions about the first one. It pointed out that CT scans expose patients to as much radiation as 100 standard x-rays. And it is known that excessive radiation is also a cause of cancer. The article also pointed to the results of a study that indicated that, despite earlier detection, there was no evidence that patients lived longer.

The article also pointed out that CT scans produced many “false positive” results, or showing something suspicious which turns out not to be cancer. This high rate of identifying changes in the lungs that were mistaken for cancer raised the possibility of unnecessary surgeries and other medical procedures to follow up on the CT indication of possible lung cancer. The article concluded that for most people the possible negative effects and risks of yearly CT scans outweighed the positive benefits of perhaps identifying lung cancer at the early stage.

And the final and most recent disclosure appearing in a medical journal and in the general press. This stated that the first study had been funded by the tobacco industry, but with this information not disclosed in the article. The suspicion was raised that reporting a method for early detection of lung cancer might influence people to, perhaps, continue

to smoke believing that their cancer would be caught in time to make a difference.

While this last suspicion has in no way been proven, any research funded by the tobacco industry raises at least the question of a conflict-of-interest in the minds of some in the medical research field. Many in the field of cancer research find it difficult to understand why the tobacco industry would be involved in this kind of research at all—especially given its history of supporting faulty research that reported for decades that tobacco had no harmful effect and was not a cause of cancer when they knew otherwise. This was, of course, the basis for the billions of dollars the tobacco companies had to pay to states to reimburse them for the costs of treating the casualties of smoking.

As always, our doctors are in the best position to determine which kinds of tests to run during our periodic physical exams and how best to balance their benefits and risks.

The CT Scan Controversy

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America’s 10 million cancer survivors require customized follow-up care for years, but so few of them are getting it, according to a major study calling for a “survivorship plan” to guide every patient’s future health care.

Half of all men and a third of all women in the U.S. will develop cancer, but the number of those who survive has more than tripled during the past three decades because of advances in early detection and treatment.

When treatment ends, these people’s special needs may be just beginning. Yet the physical, psychological and social consequences have largely been ignored by doctors, researchers, and even patient advocacy groups, often leaving survivors unaware of simmering health risks or struggling to manage them on their own, according to the Institute of Medicine.

“Successful cancer care doesn’t end when patients walk out the door after completion of their initial treatments,” said Sheldon Greenfield of the University of California, Irvine, who lead the study for the Institute, an arm of the National Academy of Sciences.

These are some of the recommendations by the Institute

of Medicine, charted by Congress to advise the government on medical matters:

Every patient completing cancer treatment should be given a customized “survivorship care plan” to guide health care.

That plan should summarize cancer care down to drug and radiation doses, cite guidelines for detecting recurrence or new malignancies, and explain long-term consequences of cancer treatment. It should also discuss prevention of future cancer and cite local psycho-social services and legal protections regarding employment and insurance.

Specialists and primary-care providers should coordinate to ensure survivor needs are met.

Health insurers should pay for this report.Scientists must improve or in some cases create guidelines

on what screenings are needed for different cancers and their therapies.

Congress should fund research of survivorship care, to assess their needs and provide evidence for quality care. (from The Washington Post, reprinted in The Voice [newsletter of the Laryngectomee Club of Montgomery County, Maryland.])

Cancer survivors often failto get follow-up care(Associated Press)

Second primary cancers New research indicates that there is a higher incidence of a second primary tumor in patients who had low stage tumors in the first cancer. This was the preliminary conclusion of a study carried out in Norway and reported at a Chicago meeting of head and neck cancer specialists this September.

A “second primary” cancer is one that is not a recurrence of the first or the result of the cancer spreading from the original site. Instead, it is a completely new one, although the cause may be the same. An example is that one can have a primary cancer in the larynx and later develop a second primary cancer in the lungs. Both may have been caused by smoking, but are otherwise not connected.

The research suggests that patients who had a low stage initial cancer may not be as closely followed as those who had higher stage cancers. The higher incidence of second primary cancers showed up with patients who had the lower stage first cancer, under the age of 66, whose cancers were in the larynx and throat, and who had a good initial treatment of the first cancer.

The results may not specifically apply to laryngectomees, but it reinforces the importance of getting follow-up examinations on the schedule recommended by our doctors. Early detection continues to be a major factor in the effectiveness of successful cancer treatment, and many laryngectomees end up surviving a second battle with cancer.

“Hoarse” PlayI’ve spawned a rhyme, a metric crime

With asymmetric feet,And ask the muse to please excuse

This poor, poetic bleat.My new voice sparks lots of remarks

And good advice, galore.Folks all mean well,-what what...

Oh, well,They just don’t know the score.The most frequent remark that

kindles the spark,That fires my spirit of fight isThe solicitious way in which

some say....“Oh, my! You’ve got laryngitis!”May n’er come the day when my

nerves will frayTo the point where I’ll shout is,

“Oh no, oh no, it isn’t so-It’s only laryng-OUT-is!”

Max Fried, Editor of the IAL News 1956

Nine Cancer Risk FactorsA recent study that focused on the risk factors for developing cancer throughout the world produced a list of nine factors that are associated with the development of various cancers.

The nine were a high body mass index (being overweight), low amounts of fruits and vegetables in the diet, physical inactivity (lack of exercise), smoking, alcohol use, unsafe sex, air pollution, indoor use of solid fuels, and contaminated injections at medical facilities.

As we look at the list some are more likely to reflect the lifestyle of modern, industrialized countries, while others do not. For example, the indoor use of solid fuels and contaminated injections at medical facilities are much more likely to occur in poorer countries.

On a worldwide basis over one third of seven million cancer deaths were directly linked to a combination of the nine risk factors. The risk factors produced twice as many cancer deaths in men compared to women. The largest male-female difference was for mouth or oropharynx cancer, both strongly affected by alcohol use and smoking, was 66% for men and 23% of women. In richer countries liver cancer had the highest difference by gender (59% for men and 37% for women.)

Lung, liver and esophageal cancers have the largest number of deaths in low and middle-income countries. In high-income countries, lung cancer accounted for 52% of all risk factors for causing cancer deaths.

If you would like to enjoy the convenience of automatic billing for your donations to the IAL, simply complete the information below and sign the form. All requested information is required. Once received, we will automatically bill your credit card for the amount you specify and the charges will appear on your monthly statement. You may cancel at any time by contacting us.

Donor Name ______________________________________Phone ____________________________

PAYMENT INFORMATIONI authorize the International Association of Laryngectomees to automatically bill the card listed below as specified:

Amount _____________ Frequency (check one) Monthly _____ Quarterly ______ Yearly ______Start billing on (date) _____________________ End billing on (date)____________________________

All donations will go to the general fund.CREDIT CARD INFORMATION:

The International Association accepts the following credit cards (check one):Visa ____ MasterCard ____ American Express ____ Discover ____

Name on credit card ________________________________________________________________ ZIP code (from billing address)______________ Credit card number _______________________________________ Exp. date ____________________ Signature ___________________________________________________Date _____________________

Mail completed form to: IAL

925B Peachtree Street NE • Suite 316 • Atlanta GA 30309

International Association of LaryngectomeesAutomatic Credit Card Billing Authorization Form

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HAS YOUR ADDRESS CHANGED?Let us know if we need to update

your mailing address to ensure that you are receiving your IAL News! Be sure to give us your old mailing address so we can delete it from our list.

www.larynxlink.comVisit us online

@Fill out and mail in the form

on the back page of this issue.

Don’t miss an issue!

Available from the IALVIDEO/DVD LIBRARY

The First Thirty Days—(1/2’’ Video or DVD) Laryngectomees discuss their experiences after surgery. A $15 donation is requested.

Move It or Lose It!—(1/2’’ Video or DVD) Exercises designed to alleviate muscle stiffness and range of motion problems for anyone who has had surgery in the neck and shoulder area. A $15 donation is requested.

It’s Not a Walk in the Park—(1/2’’ Video or DVD, 16 min.) An anti-tobacco message aimed at teens and preteens. A $15 donation is requested.

Spanish Videos & DVDsA Una Sola Voz—(1/2’’ Video or DVD, 35 min.) A $10 donation is requested.

Rehabilitacion de la Voz—(1/2’’ Video or DVD, 35 min.)

PuBLIcAtIOnsThe IAL currently publishes and

distributes the following:

IAL BrochureInformation about the IAL. FREE!

The IAL NewsA newsletter that is published four

times annual. A $5 a year donation is requested

but not necessary.

Building A Successful Laryngectomee Club

Information on how to start a club or make

your club successful. FREE!

Rescue Breathing for Laryngectomees and other Neck Breathers

Available in English and Spanish. FREE!

The above can be obtained from:IAL

925B Peachtree Street NESuite 316

Atlanta GA 30309

Videos and DVDs can be obtained from:

IAL925B Peachtree Street NE

Suite 316Atlanta GA 30309

FREE Pocket Emergency cards

Emergency cards are available in English and Spanish. (Send

stamped, self-addressed envelope and specify language.)

FREE Emergency Window stickers

These emergency stickers can be used on automobiles or on home

windows. They are available in English and Spanish.

(Send stamped, self-addressed en-velope and specify language.)

call (866) IAL-FORu(866) 425-3678

E-Mail:IALHQ@larynxlink.com

A draft of “First Steps” has been placed on the IAL web site. Those with computer access can check it out here: http://www.larynxlink.com.

“First Steps” is a revision of a printed publication distributed by the IAL some years ago when it had the financial backing of the American Cancer Society. It was the revision of a still older publication. It was and still is designed to give to those who are facing the laryngectomy surgery, those who are new laryngectomees, and caregivers. As the name implies, it is designed to provide basic information to laryngectomees and family members which is particularly useful in the immediate period after surgery.

The publication is currently 20 pages long and contains basic information on larynx cancer; the major ways of speaking again, after surgery care at home including keeping the stoma clean, keeping the stoma from shrinking, covering the stoma, coughing, importance of humidity, using a suction machine, identifying your self as a laryngectomee, showering and bathing; radiation and chemotherapy and side-effects; swallowing issues;

returning to work; connecting with other laryngectomees; respiratory rehabilitation; physical therapy, emergency CPR; dealing with emotions; and a glossary of terms.

At the Little Rock meeting the IAL Board of Directors voted to post the draft on the web site rather than wait for the document to be polished and, possibly, a source of funds found to print copies. Revisions of the previous version had been begun and abandoned over the years because of turnover in those working on the project and the inability to locate a source of funding to pay to have it printed. The Board thought that putting a less than perfect version out and available for use now was preferable to further delays.

Clubs, clinicians and others are welcome to make suggestions for changes in the publication as well as welcome to download it and print out copies to use as they see fit.

Your comments and suggestions are welcome. You can write to the Public Affairs Committee at 925B Peachtree Street NE, Suite 316, Atlanta, GA 30309; or e-mail David Blevins at David6511@aol.com.

Draft of New Publication Available

After reading several suggestions about contacting the local “911” dispatcher regarding my “condition” as a laryngectomee, I recently decided to do so. I felt this especially important, given that I, like many laryngectomees, live alone, AND, it occurred to me that perhaps a situation could arise wherein I would need “911” assistance, but would be unable, for some reason, to actually SPEAK.

First, since I was not really SURE where my local “911” dispatcher was, I called “911”

to get the correct office address. I then drove over and popped in for a visit. They could not have been nicer! I explained my “problem” (being a laryngectomee and a “neck-breather”) and asked THEM what information THEY would like to have on hand should I ever call them and be unable to speak. They happily provided me with a short list with which I returned home to complete. The following day I returned to their office with the information which they promptly added to their computer system AND to a back-up Rolodex system. They asked me to go back home, wait an hour or so, and then call them to “test” them ... so that I would know that the “system” was up and running as it should be. I did this and, predictably, it worked just fine.

So, now, if I call “911” and am unable to speak, the dispatcher now has immediate access to the following information on me:(1) Name, address, telephone number, DOB, and that I live alone.

(2) That I am a laryngectomee (no vocal cords), speak via a voice prosthesis, am a total neck breather, have had a single coronary bypass operation, and have O Negative blood type.(3) Name, address, & phone of two emergency contact persons. (An out-of-state primary family contact and one local good friend)(4) Name, address, & phone of my primary physician & ENT.(5) Listing of the medications that I take daily.(6) Preferred local hospital for emergency care(7) Name & Phone of my medical insurance carrier(8) My Medic-Alert ID number they can used to contact Medic-Alert. (I wear a Medic-Alert ID bracelet)

Needless to say, the experience was painless, short, and, I must admit, LONG OVERDUE. I certainly feel a lot better now about calling “911” if necessary. That I would recommend that ALL of us do this or something similar is a clear understatement. While I am sure each “911” office may have its own unique preference for what information they would like to have, taking the time to provide it would seem well worth the effort and would be a significant contribution to your own peace of mind.

From September ’03 New Voices(Note: Dutch Helms, who died in 2006, was the much

beloved founder of the WebWhispers Internet-based laryngectomee support group. Membership is free and you can join here:

http://www.webwhispers.org/join/how-to-join.asp).

Take care of your 911 needsby David “Dutch” Helms

David “Dutch” Helms

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IntERnAtIOnAL AssOcIAtIOn OF LARYngEctOMEEs

David Blevinsdavid6511@aol.com

Philip Doyle, Ph.Dpdoyle@uwo.ca

IAL BOARD OF DIREctORs

Ron LeClair—Webmasterwww.larynlink.com

IAL WEBsItE

Bob Herbst bobh@i2s.com

Tom Herringtomherring@embarqmail.com

Tina Long—PresidentTlong2051@charter.net

Vice PresidentCurrently Vacant

Terrie Linn Hall—Secretary tlh_tfsnc2002@yahoo.com

Sapp Funderburk—Treasurercsfund@bellsouth.net

VOIcE InstItutE

Jeff Searl, Ph.D—Directorjsearl@kumc

David Blevins—Editordavid6511@aol.com3558 Shore Drive #601Virginia Beach, VA 23455-1714

KRS Digital Designs—Design and ProductionKaren Smith & Melissa Robertswww.krsdigitaldesigns.com

IAL nEWsLEttER

EXEcutIVE DIREctOR

Susan Reeves, SLP—Executive Directorialhq@larynxlink.com

Kay Allisonwhisperingkay@yahoo.com

Tom Cleveland tcv2137@sbcglobal.net

Sheldon Schultzschultz_sheldon@yahoo.com

Joe Marascosmokelessjoe77@cox.net

In 1978, Mark I. Singer, M.D., F.A.C.S. and Eric D. Blom, Ph.D. pioneered the surgical method of Tracheoesophageal “Puncture” and the valved silicone voice prosthesis that over the past 30 years has become the international standard for voice restoration following total laryngectomy.

InHealth Technologies and their worldwide network of distributors salute Drs. Eric D. Blom, Mark I. Singer, and the late Dr. Ronald C. Hamaker for their historic record of achievement.

30CongratulationsBlom-Singer ®!

© October 2008 InHealth Technologies 080612.07 www.inhealth.com

Thirty years of pioneering innovations, clinical research, and patient experience in the specialty of voice restoration following total laryngectomy.

Surgical ProceduresPost-laryngectomy surgical procedures developed and pioneered by Mark I. Singer, M.D., F.A.C.S., Eric D. Blom, Ph.D., and Ronald C. Hamaker, M.D., F.A.C.S.

1978 Secondary Tracheoesophageal Puncture Technique1979 Secondary Pharyngeal Constrictor Muscle Myotomy Technique1982 Primary Tracheoesophageal Puncture Technique1982 Primary Pharyngeal Constrictor Muscle Myotomy Technique1985 Primary Pharyngeal Plexus Neurectomy Technique

Medical DevicesTracheoesophageal voice prostheses and related medical devices invented and pioneered by Eric D. Blom, Ph.D., Mark I. Singer, M.D., F.A.C.S., and Ronald C. Hamaker, M.D., F.A.C.S.

1978 “Duckbill” (Slit-Valve Design) Tracheoesophageal Voice Prosthesis (Blom and Singer)1980 “Hands-Free” Tracheostoma Valve and Adhesive Attachment System (Blom and Singer)1982 Tracheoesophageal Voice Prosthesis Measurement (Sizing) Device (Blom and Singer)1983 “Low Pressure” (Flap-Valve Design) Tracheoesophageal Voice Prosthesis (Blom and Singer)1985 Esophageal Insufflation Test System (Blom and Singer)1990 Tracheoesophageal Puncture Dilator (Blom and Singer)1990 Fenestrated Silicone Laryngectomy Tube (Blom and Singer)1991 Tracheoesophageal Voice Prosthesis “Safety Inserter” (Blom and Coe)1991 “Hands-Free” Adjustable Tracheostoma Valve (Blom, Coe, and Seder)1992 Tracheoesophageal Voice Pressure Manometer (Blom)1994 “Gel-Cap” Tracheoesophageal Voice Prosthesis Insertion System (Blom)1994 Tracheoesophageal Puncture Surgical Set (Blom, Singer, and Hamaker)1996 Tracheoesophageal Voice Prosthesis “Valved Insert” Device (Blom)1996 “Enlarged Esophageal Flange” Tracheoesophageal Voice Prosthesis (Blom)2007 Indwelling “Dual-Valve” Tracheoesophageal Voice Prosthesis (Blom)2008 Combined Tracheoesophageal Puncture Sizer/Dilator (Blom)2008 “Automatic,” Voice Prosthesis Retention Flange Confirmation System (Blom)

ERIC D. BLOM, PH.D.

MARK I. SINGER, M.D., F.A.C.S.

RONALD C. HAMAKER, M.D., F.A.C.S.

®

h24g

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Terrie Hall

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Sapp Funderburk

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