July 2007

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Frank Batten, C-C Winner 2007 News & Events
News Views Pat Sanders Dutch Helms Travel Grant News & Events
VoicePoints Jack E. Thomas, CCC-SLP When I Learned to Tag-Team Education-Med
A Scottish Accent Rosalie Macrae EL Flamenco Experiences
Guest Columnist Shari Aizenman Is That a Lary I Hear Larnegectomy
Between Friends Donna McGary Dreams And  Icons Experiences
Vicki's Midnight Train Vicki Eorio Had A Stroke Personal Story
Practically Speaking Elizabeth Finchem Water, Water Everywhere Experiences
Worth Every Penny Lanny Keithley Looking Over The Edge How To
New Members Michael Csapo Welcome News & Events

 

 

 

 

Frank Batten, Casey-Cooper Award Winner 2007

 

 

It is my pleasure to announce the decision from our awards committee for WebWhispers Casey Cooper Award winner for 2007. The nominating letter described the reasons for their choice so well that I would like to share it with you.


Frank Batten of Norfolk, Virginia became a laryngectomee in 1979 when he was CEO of Landmark Communications, an extensive multimedia empire with close to five thousand employees. He developed esophageal speech of such quality and intelligibility that Eric Blom, Ph.D. told him that a tracheoesophageal puncture and voice prosthesis wouldn't offer enough voice improvement to warrant the surgery. This was in 1981 when he and Dr. Blom met at a Mayo Clinic Seminar. Mr. Batten was persistent and called Head and Neck Surgery Associates in Indianapolis, Indiana and told Dr. Blom that he wanted to have the procedure because he felt his voice with a prosthesis would be more routinely reliable with greater volume in the many business meetings that were part of his life. He went to Indianapolis a short time later where Dr. Mark Singer performed the surgery, and he was fit for a prosthesis by Dr. Blom. He has routinely used a prosthesis since that time.

In 1998 Mr. Batten received a Harvard Business School Achievement Award, and the following quote is from the Harvard Business School Bulletin. "Frank Batten has delivered hundreds of speeches on the media, philanthropy and education. The fact that most of these talks were given after the removal of his larynx is a testament to his courage and perseverance. Batten an entrepreneur who thrives on difficult challenges, says that coping with cancer was on of the biggest hurdles he has ever faced." No one could be a greater role model for new laryngectomees who are wondering how they will face life and career post surgery.


Mr. Batten is a member of the Tidewater Lost Cord Club in Norfolk, Virginia where he became acquainted with the work of the International Association of Laryngectomees and the role its Voice Institute could play in the lives of recent laryngectomees. A large donation to the IAL established the Batten Fund which provides stipends to laryngectomees to attend a Voice Institute. Through the years many persons who would otherwise not have had the opportunity were able to improve their individual methods of speech and move closer to total rehabilitation.

Mr. Batten was a keynote speaker at two Annual Meetings of the IAL. When the IAL became independent of the American Cancer Society and its financial support Mr. Batten provided financial support to continue the publication of the newsletter. More recently, he donated generously again to support the production of the newsletter.

Although the International Association of Laryngectomees has been the recipient of Frank Batten's financial support, we must also recognize the broad effect these funds have had on many laryngectomees throughout the world. I believe that an organization devoted to assisting new laryngectomees, such as WebWhispers, should recognize not only the monetary contributions of Mr. Batten but also the kind of role model he has been.

 

Many of his philanthropic endeavors have been in the educational field and we applaud him for those choices.

The online Wikipedia comments: Frank Batten attended the Culver Military Academy as a young man. He later received his undergraduate degree from the University of Virginia in Charlottesville, Virginia, and his MBA from Harvard in 1952. With a strong commitment to education, Batten became the first Rector of Old Dominion University in Norfolk, Virginia. He has also served on the boards of the College of William and Mary and Hollins College, and was Vice Chairmain of Virginia's State Council of Higher Education.
We are pleased to be able to honor him in our small way.

 

More Good News

 

Lisa Proper, FL Clincian of the Year
Our VoicePoints Coordinator, Lisa Proper was chosen by the Florida Association of Speech-Language Pathologists and Audiologists as the Clinician of the Year.  Congratulations, Lisa, we are even more proud of you.

 

 

Dutch Helms Travel Grant

 

Jobeth Seder Erickson, Vice President & General Manager of InHealth Technologies, a division of Helix Medical, LLC has announced the awarding of a grant to WebWhispers member and V-P of Internet Activities, Michael Csapo, to support his attending the IAL Annual Meeting this year. Michael was chosen as a recipient of the Dutch Helms Travel Grant, in part, for making a huge contribution toward WebWhispers and laryngectomees, in taking over the list management section of WebWhispers, which had been managed by Dutch Helms since formation. Attending the IAL will give Michael a chance to meet with other members, hear lectures, visit vendors and learn in order to bring new knowledge back and be an even more knowledgeable contributor toward education of laryngectomees.

 

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

 VoicePoints     [© 2007 Lisa Proper]
Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S ( proper.lisa@mayo.edu )

 

Way back when....I Learned to Tag-Team

Jack E. Thomas, CCC-SLP, BC-ANCDS
Mayo Clinic
Rochester, Minnesota


 

One of the reasons why some laryngectomized people have been annoyed with me in the past, is what I've chosen to write about today ---but here goes. It took place a long time ago, but it was memorable, and it changed the way I practice.

 

I work at Mayo Clinic in Rochester, Minnesota. The medical center is big, but our city is relatively small. People come from all over the nation and the world for their medical care here. The majority of our patients are from throughout the Midwest.

 

When I needed to have an experienced laryngectomee visitor see one of my newly laryngectomized patients, I had few people to choose from in our immediate geographical area. It seemed that, of the small pool of people I had available, the ones most eager to meet with new patients were poor speakers, no matter what alaryngeal method of speech they were using. One, with a partial glossectomy, had a TEP and was hardly intelligible to my ear, even though I had known the one person for years and we had directly addressed reducing speaking rate, and articulatory compensations. Another had a long standing hearing impairment of marked severity and simply could not master an artificial larynx. He seemed unable to put the device in the right location or to get it to his neck without buzzing it before getting started, and there were a number of other problems. Time had proven that their communication behaviors were not going to improve.

 

I had been witness to the beauty and life-long impact of an optimal meeting between a proficient alaryngeal speaker and a newly laryngectomized person. The new patient's mood and perspective would change immediately and dramatically for the better. For the new laryngectomee, the sense of relief is palpable. Hope blossoms. Plans percolate. He or she is inspired. The experienced alaryngeal speaker is energized with a sense of purpose.
 
I have also witnessed the alarm and sadness of a newly laryngectomized patient when first meeting with another laryngectomee who is a poor speaker. The disappointment of the new patient is obvious and painful.
 
I observed one such meeting involving a well-intentioned but poor esophageal speaker and one of my clearly discouraged new patients - (in my eyes it was an utter fiasco, particularly when the esophageal speech from the experienced one was unintelligible much of the time except when he clearly said to the new guy, "You'll be able to get rid of that squawk box." aka artificial larynx. At that point, I realized some big changes were necessary. I decided that if the laryngectomized speaker was a poor one, their visit was worse than no visit at all. In retrospect, I realize this wasn't such a profound conclusion, but I was young and it was a big one for me at the time. I broke the news to my enthusiastic, unintelligible laryngectomee visitors--individually, confidentially, respectfully. Boy, were they upset! And afterward I was looking over my shoulder for a long time. It didn't help when a couple days afterwards my wife told me I received a telephone call. "I think it was one of your patients using one of those devices. Didn't leave a message. I couldn't understand him very well. I think he just wanted to know if you were home."

 

Gulp!

 

Anyway, to fill the gap I showed new laryngectomy patients video tapes of good and excellent alaryngeal speakers. Some of the laryngectomees on the tapes were patients I had worked with in the past. Others were friends from IAL. These superb speakers radiated a positive attitude and unbiasedness about forms of alaryngeal speech. They talked about everything--embarrassment, stomas, friends, clothing, hygiene, disfigurement, love, sex, suicide, God, and more. My new patients loved the tapes. They were positively riveted to the screen! So were their family members.

 

I did not altogether abandon reliance on real live laryngectomized visitors. When I had a good speaker come through the clinic at the same time a new patient was in the hospital, I did my best to arrange a meeting between them. However, I was (and still am) present for all first meetings of experienced laryngectomees with inexperienced ones. I do my best to stand back and let the interaction take place on its own. I step in only when necessary, usually to clarify something.

 

Why so much overseeing? I learned I could not depend upon an experienced laryngectomee to deliver accurate, general information about speech after laryngectomy. Major inaccuracies were related even if the experienced person had formal "Visitor" training. I ended up doing a lot of explaining and clean-up after these visits. I do not say this with vindictive tone because it's not an easy job. I don't know how a person cannot personalize information if they have had a similar life-threatening/life-altering experience, and they are proud of their rehabilitative accomplishments, and they have a desire to help others. Naturally, a new patient is going to ask the old timer questions about how it's really going to be. The other one will rely on his or her own experiences.

 

It is my responsibility to provide the new person factual information about communication options based upon the type of surgery they have had and other patient-specific circumstances. The "facts" that the laryngectomized visitor relates to new laryngectomees are quite different from mine, yet incontestably essential--they provide a model for overcoming tremendous obstacles, for setting goals, demonstrating success at living a fulfilling life, laughing more often, and helping others.

 

If the inexperienced laryngectomee decides to meet with the experienced one after being dismissed from the hospital, that is their decision.

 

But the tag-team approach for the new patient, using a fine alaryngeal speaker and an SLP-- has worked out well for everyone involved.
6/19/2007
 

 

 

 

EL flamenco.....

by Rosalie Macrae

 

(Vestal Virgin heavily disguised in 1970s white polyester sheet in bottom third of picture at Stonehenge 1984.)
 
 
Well we all have a past, don't we, and Stonehenge is where I would have liked to have been again in the summer solstice this year. Back in 1984, June 20 was the perfect Midsummer Night to think deep thoughts, feel eternal, and admire all the beautiful musicians like any good middle-aged hippy worth her candle. I had been introduced to an astonishing, charismatic rock band called Hawkwind and squeezed myself into one of the group pictures taken on that magical night by their /my guru, Andy Burnham.

 

Instead, roll on 2007, and I was transplanted to a freezing beach in East Anglia, facing the North Sea, having a Spanish fiesta. The reasons for this are as shrouded in mystery as the ancient Druids. But I think may have had something to do with my hostess, of more later, knocking back one schooner short of an armada of dry sherry, and deciding castanets would be more jolly than chants. I was too cold to care. The chicken paella had made me choke. My EL didn't do flamenco. and I had a spray of seaweed instead of a rose between my teeth. Most importantly my battery needed changing and I needed to spend a penny.

 

I dived behind one of the local rocks where lurk bits of amber as big as your thumb sometimes. The woman who runs the local shop has a necklace of them, which is so heavy that she staggers about while trying to find exotic things like black pepper for the funny summer people. Each bit of amber was a gift from an old love she told me. So the suffering was worthwhile and reminded her of happy times on the dunes. Love hurts.

 

An impatient voice from the next rock along interrupted the forever amber frolic musings and said to read the instructions on the packet, and not spoil her night, please. It was Shirley, another Vestal Virgin who still can't forgive her mother for the name but has, in fact, Shirley Temple curls, albeit graying. Husband Lee was on the cell phone from their uniquely lovely, shaking bungalow, which they got cheaply, as it is virtually on the runway at London Heathrow airport. He was asking how to do the noodles but she knew he was checking up, being insecure, which is what constant noise does for you, and said chance would be a good thing in this place. We struggled in the gloom to lace up the tap shoes I had found for her in a local thrift shop. WHO said it was broad daylight for 24 hours on the longest day?

 

Shirley said it was mad anyway because you couldn't make high-heeled flamenco dance noises on the silvery sands. Another Vestal maiden, a voluptuously attractive pig farmer called Stephanie, declared she had no imagination and knocked over a massive flat stone with one large index finger. Voila! Perfect platform for an on-the-spot flamenco solo if you knew the steps and she just happened to have her guitar with her. As one does, "Especially if you are a Stephanie", Shirley muttered.

 

We all took a turn on the flat stone. My spare Servox, very low-pitched as I haven't had it tuned in yet, did a passable bass harp noise which duetted with Stephanie. It stole her limelight a bit as I got the isn't-she-wonderful ohlays, which give the audience that feelgood feeling. And made me want to spend a penny again, with emotion, in the unkind wind blowing across from Holland.

 

Have delayed mentioning until now that the hostess, Joan, once a county athlete, has her poor back locked in a bow at an angle of 45 degrees. The sciatic nerve was trapped six months ago. It is the grand-daddy of agony. Joan, this brave friend, is in permanent pain, on morphine shots, and has to make a decision by August about whether to risk having an operation on her back which has a 50% chance of success. The other outcome is too awful to contemplate. Alcohol dulled the pain enough for her not to cancel this Spanish night, which has become a tradition.

 

We had a big bear hug when it was time for me to go. An annoying side-effect of laryngectomy is that I have become fond of my own high bed and drive for hours to return to it. Joan said that whatever happened she had this night to remember. Then she looked at me in the half light. For goodness sake. Why am I getting so morbid. Look at you, Macrae!'

 

She remembered coming to see me in hospital just after the laryngectomy. I had only wanted to see my family and Joan. If anyone had told her then that I'd be seeing in the summer solstice in two years, skinny but fine, she would have thought it a sick joke.

 

I said, truthfully, that she was the worst person I knew at understanding my EL voice. But she was going to have to get used to it after her operation. Rosalie was taking over when Shirley was too busy guiding the planes in. HA! And our Joan would be seeing in the next summer solstice. The Vestal Virgins would see to that. Please God.
 

 

 

 

 

Is That a Lary I Hear?

Shari Aizenman
 
 
I guess not too many civilians can say that they could recognize a lary at 100 paces. I have made it my life’s work to be of service to others in whatever way possible. Funny how, when you are open to the universe, it brings gifts. Some may call them coincidences but not me.
 
I was in line in the landscaping department at a home improvement store (behind the guy none of whose items had a sticker), patiently waiting to check out my four items (all if which did have stickers) and noticed a slender woman, just behind me in line, exchanging plants from her tray; first it was marigolds, she looked up as if in thought, then switched to begonias, then repeated and came back with two marigolds and some… periwinkles, was it?
 
When it was my turn to check out, I assisted the cashier: two of these, three of these and four of these, as I held up the UPC codes for him to scan. As I was signing the receipt, the cashier began to scan this lady’s plants. She whispered, “ Two of these, two of these and two of these.” “Excuse me?,” exclaimed the cashier. The lady repeated her whispers. I went off to the car thinking…is that a lary?

 

In the parking lot, as I was putting down paper in the trunk to protect the carpet, the same lady wheeled her cart up to the car parked next to mine. I now realized there WAS something different at the notch in her blouse collar. I said, “Excuse me,” and she turned around. “Are you a laryngectomee?” I asked. Am I not bold? She looked and whispered, “Yes,” and came closer to speak further. “But I have not had my larynx removed. It was damaged in treatment.”
 
That was my way in. I told her my name and shook her hand. She whispered hers. I held her hand and gently squeezed it. I asked if she had had a bout with cancer and she said that yes, she had. I asked if she was aware of the WebWhispers website, newsletter, and the international support available to her on the internet. She was not. I told her about my friend, Pat Sanders, the meetings and cruises, the myriad support available and after writing the web site address on back, gave her my card.

 

She then told me, “My name is also spelled with an “i” and I have to tell you something. I have never shopped at this store before. This isn’t even my neighborhood. I haven’t been much of anywhere for the past year, but something told me to come here today.”

 

I cannot tell you how that meeting touched something deep down inside me. The knowingness that I have purpose. That if each one of us were to reach out to one person and touch them, the world might be an even better place.

 

Pat told me recently that my “flower” lady had contacted and joined WW.  That makes me feel good about life.
 
Shari Aizenman, Massage Therapist
 

 

 


 
 BETWEEN FRIENDS          Donna McGary
                                     "That which does not kill us makes us stronger"
 

 


Dreams and Icons

 


I think I just had what they call an Epiphany. I was thinking about my voice... once again. You know how there is always someone in every office (or family) whose voice is so grating that no matter how good or true or smart or funny they are, you just want to yell, "Please, stop talking." Well, actually if they sound awful but are REALLY funny, I will give them some leeway, but that is not my point. My point is, some days I feel that way about myself. I love my Servox and I would be helpless without it, but honestly, mostly I feel like its watching Al Gore dance. You appreciate the effort but it's painful to watch.
 
So, anyway, in the midst of THAT sobering thought, I wondered, if I were to miraculously get my own original voice back, what would be my first words? And that is a very compelling question. There is something so intimate and personal about our natural voice...and frankly something most everyone takes for granted. Losing one's voice is uncommon. There are plenty of other body parts that get far more press (and dollars and sympathy), I might add.
 
Back to the voice...what would I say? It's like imagining what you would do if you won the lottery. How many words do I get? How long do I get to keep my voice? The first thing I would do after I called all my family and friends and crowed and reveled and hooted and hollered and told every joke I could remember, replete with accents and sound effects, would be to go find a karaoke bar. I am NOT a real singer but I can carry a tune and I would be fearless now. I would want to belt out some Etta James and Bonnie Raitt. I would want to croon some Cassandra Wilson, but I doubt they will have that.
 
I would get out all my favorite children's books and read every one of them, perfectly and clearly in a recording studio, so if I lose my voice again, my future grandchildren will know my voice as I read to them.

 

I would record myself saying, I love you, in as many permutations as I can imagine...and on a separate CD, one the family wouldn't stumble across, maybe some other things.

 

I would record myself saying "Here kitty, kitty" and "Hello, Sweetheart" and singing "Happy Birthday" and "Lord, Blow the Moon Out, Please" [an old Girl Scout camp song I sang as a lullaby]. I would go through all my books and read aloud my favorite passages. I would record all my favorite Maine jokes, in my best Downeast drawl. I would even include some of my Yiddish material. Country Club Heights didn't call me their "Shiksa storyteller" for nothing!
 
I would be the quintessential example of the woman who talks "just to hear the sound of her own voice". I don't think even my brother or my son (who regularly threatens to steal my batteries) would have the heart, or the power to stop me.
 
This fantasy was not my epiphany, as delightful as it was. My moment of truth was much more mundane. I called someone I barely know on the telephone and before I had a chance to identify myself, she said, "Hi, Donna". I laughed and remarked that one advantage to my situation was that I had such a distinctive voice, people tended to remember it. She laughed, rather uneasily, I thought.

 

I have a lovely and well-meaning neighbor who said to me recently, "I just think you do so well with your affliction." Affliction?! To me the afflicted are something Jesus healed and my Nana prayed for at the end of Grace as in "Lord, remember the afflicted and the poor". Now I know I have hit some bumps in the road, but I don't think I am in that category just yet.
 
So maybe my distinctive voice is not so much an affliction as a trademark...like my voluminous scarves and funky earrings or maybe my liberal politics, wicked sense of humor and killer pesto crostini hors d'oeuvres. All liabilities in the wrong crowd, assets in the right (actually that probably would be the left crowd)!

 

I am still not loving this voice, but I am going to make the best of it. I am trying to think of all the liabilities turned to iconic assets. The debonair Hathaway Man (BTW those shirts were made right here in Maine) with his eye patch; the lollypop-sucking bald detective Kojak who made both being bald and quitting smoking cool; numerous canes and walking sticks throughout British literature, mostly recently popularized by wizards from both Middle Earth and Hogwarts. Unfortunately, those are all men.

 

Certainly there are some women, but the only one I can think of right now is Dusty Springfield. You know that trademark hand in front of the face and then outstretched arm"...You Don't Own Me"...she couldn't see for beans without glasses which she refused to wear on stage, so she wrote lyrics on her arms. I actually learned this from a profile of her on "Ovation - the Arts Channel", which, truth be told, is for snobs who don't want to admit they watch "E Entertainment - The True Story ". I watch both, on a bad night.

 

What I am trying to say is its not easy turning a hole in the neck and a weird voice into an iconic asset. But, I am trying. And I have an idea. Let's make a list, together, of all those people, real or imagined, who have turned an obvious liability into a positive image. Ours is, as someone recently noted on the WW List, a visible cancer. People know right away something is different. Let's have our own list of characters, stars, scoundrels and super heroes who have turned any disadvantage into an advantage.

 

I will start.
 
#1 The Incredible Hulk....you thought we had problems! HAH!
 
Send your contributions to me and put <<icons>> in the subject line. This could be great fun and I promise to publish the results.

 

See you in Vermont
Donna
 

 

 

 

 

Letter from Vicki

June 8

Had a stroke but am ok. was on the left side and am making a great recovery. Am home after 2 weeks in the hospital and rehab. A little fuzzy at times and altho typing is part of my therapy, have some problems getting the keys right. Am just so very, very, very tired.
Love and prayers........

 

June 24

Am still live and kicking (using only one leg though). Sorry to be out of touch. It has been a rough time. Can't even remember what I told you. But to start from the beginning, was washing my hair in the shower, getting ready to go to work and my left hand stopped working.
 
I knew enough to do a few tests like finger to nose. On my left side, no luck. Came upstairs and wrote a note to Frank that I was having a stroke. He called our PCP who sent us to the stroke unit and a hospital about 20 miles away. Found out later the hospital is accredited by every organization there is! How lucky for us and all the other patients!
 
It also turned out that the neurologist who was called when I got there, (by that time my leg was gone and my face was drooping), is in charge of a major study from the FDA and a drug company. My symptoms qualified me for joining the study. He asked me, even tho it is a double blind study, did I want to participate? Frank was nervous when he read the side effects but I didn't think I had any choice so we went for it. The doc and his nurse never left me while I was in ER getting the drug and followed me to intensive care.
 
Pat, being an old nurse, I tend to evaluate all care with a very critical eye. The team I had was outstanding! Nothing was harder for me than to give up control and have to have a bed bath and a bed pan but they made it all ok. At one point I had 4 IV ports in my arms, couldn't move the left one so that didn't matter but it was tough to try to eat or even move. I think I had every test they had on site. Most of it was part of the study. My blood pressure went way, way up and then would drop below normal. I was scared to death.

Plus I was evaluated by every "ist" person you can thing of.......P Therapist, OT therapist, Speech Therapist, Psychologist, 2 Internal Medicine docs, and those are just the ones I can remember.

In the meantime, poor Frank was working with a carpenter to put up grab bars and redo the walk-in shower (thank heavens it is on the main floor), moving a futon to which he added a box spring so that is our bed in the living room. He got a potty chair, elevated toilet seats, walker, a quad cane for when I am able use it, exercise bike in the spare bedroom, and lots of little things like oversized tee shirts, cheap capris, sweat socks, sturdy shoes so I don't slip, and he removed all the area rugs. When I finally got home after 10 days in 2 hospitals, I didn't recognize the place and while it isn't pretty, it is functional and safe.

I started outpatient OT and PT 2 weeks ago. I love those ladies but they are tough! I accused them of being trained in Germany. They laugh and tell me to do another exercise. Pat, I have been blessed from day one with the most outstanding care you can imagine.

As badly as I want to go back to work or work from home, it is not to be just yet. Right now I need supervision at all times. So when Frank goes to the store, he puts Annie (my beloved dog) and me to bed with the potty box next to me, the TV control, the phone and I am set.
 
Am surprised at how tired I am! And how much pain I have on the left side. Everyone says it is due to the stroke and that it really is considered a "fresh" one.

Thank you for your love and concern. I have no problem with you telling the membership but I will leave that up to you. I don't know if they have even missed me.

 

Vicki Eorio

 

 
I wrote to Vicki to tell her we were going to use her letter, only slightly edited, to help save some lives.  I wonder if I would have known what was happening.  Would you?

 

Pat
 

 

 

    Practically Speaking ...
                                                                                
By Elizabeth Finchem, Tucson, AZ
 

 

 

Water, Water Everywhere

 

 

What could possibly be a more basic or practical topic than water? As laryngectomees it becomes even more important than it was prior to our surgery. We are concerned with proper humidity for breathing. Shower & shampooing can become a major concern that leads to the purchase of extraneous equipment to cover the stoma. Do you drink enough water? Is it safe to bathe, wade, or swim? Must you fill in your swimming pool with dirt, as one doctor recommended? Must you sell your fishing boat? Would you drown if you accidentally fell off the dock, or the edge of a pool? Is going on a Cruise Liner as close to the water as you can safely manage? All are good questions. Some answers are simpler than others.

 

Three decades later, and it still surprises me when I learn that some laryngectomees are not getting the same sort of pre-op counseling I received. It was not just about the surgery, voice restoration, and returning to work, it also included returning to my life style. To this day that remains my definition of total rehabilitation. When I became a laryngectomee my life style included 42 years of all sorts of water sports: swimming, boating and fishing. You could call me one of those "Water Babies". It remains a necessary element of my life.

 

Those of us who grew up near the water, whether it was lakes, oceans, rivers, or ponds ground ourselves by getting wet. It is a spiritual thing for some of us. Those who sail know exactly what being in harmony with nature means. Those who fish know the simple life style that is so rewarding. Swimmers know the value of the physical exercise, and clearing of the mind, while you swim laps. Those who attend water aerobics classes know that they refresh body and soul.

 

Unfortunately, there are still doctors, speech/language pathologists and organizations making statements that amount to a "Disclaimer": "Of course, laryngectomees may no longer swim!" That'll scare ya!. If you never swam, it should. On the other hand, what do you plan to do to prepare for an accident you or a loved one might have in, or near, the water? Fear of the water won't solve that problem. One solution may be as near as your local YM or YWCA, Community Center, or Spa that has a shallow pool for water aerobics classes. The buoyancy of the water will help move those muscles and joints you thought were frozen. It's time to move them.

 

For those of you who are still fearful about water? Perhaps it is because you cough when you are in the shower or when you use saline solution. Let's be clear about the coughing, and exactly what it is. It is a means of coughing out and clearing the trachea and lungs. It is our filter system now. You are not drowning. You are not sick. Coughing is a good thing for a neck breather to do...every day. Prior to the surgery coughing was a symptom, or warning, that you were ill. Post-op that has changed permanently. When those around you get ready to do the Heimlich maneuver when you cough in public, reassure them..."I'm okay", and offer a brief explanation so they are reassured that it is not life threatening.

 

If you find yourself in water unexpectedly here is a practical tip: In the water do not inhale or gasp to take air in for breath. Do hold your breath, and occlude your stoma with a thumb or finger. When necessary you can very "s l o w l y" blow air out of your stoma, a little at a time, before covering it again. You can practice this at home so you know what to do...just in case? No, water will not flow into your stoma while you're blowing air out. Swimmers have always used this procedure.
 
During the IAL Annual Meeting in Burlington, VT this month we will have the opportunity to demonstrate the various ways seasoned laryngectomees have learned to swim, boat, fish, surf, and enjoy the water again. We will have variety of equipment there. An accredited water aerobics instructor from the local YMCA will lead a brief class for all who care to participate. Better bring a swim suit so you can play with us. The hotel pool is shallow from end to end. We will meet at the Sheraton Burlington Hotel & Conference Center Pool on Thursday, July 12th, 2007 from 3:45-4:45pm. (I know there will be the usually few that must "try" in the last few minutes...so you will probably find us there until 5pm.)

 

Several people have helped to furnish the following requested information:

 

Belly Boats, or Float Tubes:

The company that makes the float tubes is Caddis Sports Inc. in Brush Praire, Washington, 98606 www.caddissports.com. I bought mine from LL Bean in Freeport Maine www.llbean.com. The model I just purchased is LL Bean Model # 0CUQ7 40 000 Caddis High Sierra Float Tube. It cost me $79.00 plus tax $7.95 for a total of $86.95. The model you saw last time was khaki green , and you sat in it like a jacket with pockets around the outside. This new one looks just like it but is red and tan. The last one I bought (the green and tan one )was from Sports Authority, who no longer stocks them. There is another company that sells fisherman's float tubes is Cabelas 1-800-237-4444 www.cabelas.com and look under float tubes. They have over a dozen models going from $59 to $300................(Bob Herbst)

 

Lift Vests:

You want the manual as opposed to the automatic model. The latter inflates automatically if it gets wet, a new inflation kits cost $25 to $30! I had a friend blow mine up for me about half way so I can use it as a 'swimming jacket. Since then I have learned to do it myself with a bicycle pump.

 

Life Raft:

Here is someone offering the old manual model. Aside from being lots cheaper it is preferable!
Elinor (Ripley)

 

I took Elinor up on her suggestion and ordered a "Manual Lift Inflatable PFD, only to be notified later that they no longer carry the manual model. I emailed to tell them how disappointed I was, and why the manual model is better for our needs.
(The automatic style inflates when it get wet as orange Emergency equipment in case a person falls into the water and is unconscious.)

 

Shortly after I thought I was out of luck, I received a message stating that I could buy the floor display model. I did. It will be delivered to me in Burlington on time.
I also told Teresa, the representative, about including their Website in this article and the demonstration at the IAL AM. I asked if she could possibly locate more manual models for the orders I am certain she will soon receive.

 

She wrote this:

Thanks! We do appreciate passing along our website. I will do my best to get more manuals in stock.
Teresa Collins O'Connor
Life Raft and Survival Equipment, Inc.
3 Maritime Drive
Portsmouth, RI 02871
401-683-0307
fax: 401-683-2875
www.LRSE.com
 
When you go to their website you will see the moving illustration that shows how much higher this jacket will lift you out of the water than a regular life vest. Thanks, Elinor, for all your research, and Teresa for trying to help us find more manual models.
 

Larkel:

The Larkel is a rubber trach tube. It has a pneumatic collar on it with a thin hose that is inflated when a syringe full of air is pushed into the end stop. The hose is then clamped air tight. When ready the air is released by unclamping the clip and reinserting the empty syringe to allow the air to escape. The device is held in place with elastic around the back of the neck and hooked into the sides of the trach tube; much like a metal or plastic trach tube design. It can be used to swim "Australian Crawl", or any other stroke. The exterior snorkel like hose can be held in the mouth for breathing, or strapped to the head like a snorkel tube with the ball at the top to close it off.

 

Although the Larkel is not for sale in the USA at present, the Larkel representative, Jan Bialek, will be with us in Burlington to answer your questions. The IAL AM "Water Activities" program is meant to be a "demo only" by users of the Larkel and other equipment. There must be a way to offer help with fitting, training, and purchase of the Larkel without going to Germany, due to legal concerns. Perhaps a signed agreement, or waiver would facilitate the sale.

 

Surfing, Scuba, and Snorkeling:

Finally, for all you Surfers, retired Seals, scuba divers, and those who snorkel. I called Danny Viveiros' home yesterday, and spoke to his wife, Kristie. She gave me permission to share his email address: dnkv@sbcglobal.net.

 

Twenty years ago a surfer named Danny became a laryngectomee. He remains cancer free. Where there is a will, there is a way...and Danny found his. He figured out how to combine a wet suit and a Larkel/snorkel type device together. He never stopped surfing in the Pacific Ocean; he couldn't. When asked about how this works, he begins with basic information such as, you need to try the Larkel first to see if that works for you, before going any further.

 

I asked Debi Austin to help me track down a video tape of Danny surfing. The title is, "Tobacco X Files" or "Tobacco X Files Revisited". It is shown to classrooms all over the Country as part of Tobacco Ed. Classes.

 

Debi found this info:

"TOBACCO X FILES REVISITED :: Tobacco :: Discover Films, Inc.
Using a humorous conspiracy plot to entertain and inform students, the 'gross'
effects of tobacco are exposed. When a pair of sci-fi sleuths uncover a ...
http://www.discover-films.com/store/catalog/TOBACCO-X-FILES-REVISITED-p-32.html - 45k - similar pages.

 

I am not sure about the price. Try to find it on ebay. I have everyone looking for it. I know I have seen it, but I don't think I have a copy. I will check with the Board of Education. Sometime the main offices have a library that can be accessed by educators that don't teach on a regular basis.
Debi (Austin)"

 

Thanks for your help Debi. Perhaps one of our readers will find a copy?

 

John Lubelski's LTSD:

John sent this information for me to share with everyone so you can see the device he has been working on. "FYI, I just returned from "sea trials" in Florida... We have just finished posting the Florida pictures on the web at www.ltswim.com. Please have a look!"

 

Unfortunately, John will not be able to participate in the Burlington Program due to a family event. I hope that we will get to see this device at the IAL in 2009.

 

In closing I must add that some of us swim without using a device. We just use our thumb or finger to occlude the stoma. Some folks with very large stomas use a ping pong ball, or baby nipple over their thumb, for a water tight seal so they could dive of jump into the pool.

 

Please take baby steps as you get wet again for safety sake. Another caution is not to mix alcohol and swimming. I've heard tales of tipsy folks who forget they have a stoma. The old warning "never swim alone" is still a good one. This year I am attempting to persuade non-swimmers into the water just for the fun, the exercise. I won't stop trying to debunk the myth that "laryngectomees must never go near the water again". 'Hope to see ya in Burlington. Don't forget to pack your swim suit.

 

Elizabeth Finchem
 

 

 

 

 

[The March ‘07 article discussed and defined the power and capabilities of The Human Computer – that thing that sits between your ears. From here on, you might want to review that article if any of this isn’t making sense or working for you. But, for now, we are going to start learning techniques to help you better deal with life’s daily issues and realities – and we will be using our Human Computer to assist in these processes.]

 

 

Looking over the Edge…

By Lanny Keithley

 

The other night I was in bed watching some light TV, surfing the channels, and stopped on the History Channel. This show called “Last Days on Earth” just started. It was describing the seven most logical choices of events, or circumstances that could do in all of humanity. Such things as black holes, giant asteroids, viruses, technology turning against us – all sorts of fun stuff…
 
Then, they got to one on super volcanoes, which after all the previous ones, wasn’t that big of a deal, until they said that the most logical choice of where it would happen is Yellowstone Park. They were showing some great graphic presentations of how it would happen using a map, which identified the states in the region. I then realized that if such an event were to take place, living in Idaho, we would be cinders in about 2 minutes or less. This was not good news mentally, as one of the one things that I have always felt good about moving to and living here was that it was relatively safe from a natural or man-made disaster point of view – about a thousand miles from the coast or anything worth destroying…
 
Immediately, my mind started doing its thing - bringing up all sorts of past experiences, past images from movies or whatever, and all the ‘stuff’ in my 60 years of computer’s memory about such scary things. I mentally grabbed it and wrestled it to a halt, but in the past, it could have evolved into a real lather, in no time, if not controlled.
 
When I was stopping my mind from being concerned about the super volcano, I was thinking “Heck… I could die a lot easier than that, and it wouldn’t take a mega-disaster to do it.” And, besides, I have already looked over the edge of life when I had my throat cancer and all the recovery.
 
Then, my mind brought up an event that just happened the day before. I was going fishing. Close to my home, there is this strange little uphill curve in the road that is blind to both sides until right at the top. There was this young girl driving the other way, going too fast and talking on the cell phone. She came over the top and barely was able to control her car, make the turn, and therefore not crash head on into me. At the time, I thought about how close that was and again how fragile life really is.
 
Then, I remembered driving on Highway 1 below San Francisco along the cliffs and being passed by two crazy guys on a totally blind corner. If there had been a car coming the other way, it would have probably been the end for us all.
 
So, this article is about the fragility of life and enjoying every moment that you have of it. Unless some pending disaster occurs that can define how many days you have left, like with the giant asteroid on the TV show last night, you just never know what is around that next corner. You never will know until your there, but if you don’t at least figure there could be something bad, its hard to really make the most of now, and each successive now you have left in your life.
 
When I was diagnosed with the throat cancer and within days had the operation and then recovery, I had never really pondered the fragility of life. I had always had reasonably good health and had nothing I couldn’t deal with before. I had also been pretty insulated from death, except for older people, like my parents. Then, BAM, as Emeril would say, there I was – looking over the edge of life with my eyes wide open…
 
Since then, I have often pondered “What is the most important part of life to savor?” Or better yet, “If you only had time left for one thing, what would it be?” I guess it depends on what you are most needy of - To a starving person, it’s the next meal, and to a suffocating person it’s the next breath. But, figuring all your immediate requirements to survive are met, what things are most important to do and enjoy as possibly your last?
 
I say “Do” and “Enjoy” separately as they are two very different things to ponder. Each of them necessary and important, in their own right, and should be considered.
 
Things in the “Do” category include ‘unfinished’ and/or legal business. If any items come up when pondering this question, they should be completed so you don’t have to worry about them anymore. If you don’t do them now, when will they get done and by whom? How many more of your life’s remaining moments do you want to spend worrying about stuff that you need to get done? The unfinished business includes things you feel the need to get done to be happy and satisfied with your life, whatever they may be. The legal business is those things that legally you need to get done to wrap up your life so it won’t be left to loved ones or others to have to decide for you after you are gone.
 
All the items in above “Do” category were brought up so you can continue freeing up your life of worry and concern, which has been the overall topic of this series of articles, so you can spend more time in the “Enjoy” category. Once you have looked over the edge of life, or even seriously pondered the concept, you know every moment is precious and that life is made up of very few ‘special moments’. And, the more ‘special moments’ you can experience in life, the more enjoyable it will be.
 
Most everybody had a whole list of things they want to enjoy in life before they die. This list probably includes what you might consider ‘wild and crazy’ or daring things for you to do. If you really ever want to do them, and enjoy the thrill or excitement of having actually done them, you really should consider it now. In most cases, those ‘wild and crazy’ things are doable and would be added to the list of ‘special moments’ in your life’s memories.
 
In addition to the daring things on your list, you probably have lots of things that you ‘always wanted to do when you got time’. Well, the time is now, or its probably not going to happen. And, with each passing year, your abilities and options will be reduced to further limit any such things from ever happening in your life.
 
Becoming a lary limited my life’s options and abilities in many ways. It also gave me new options that I never had before. I could have easily become completely depressed, limiting my activities and overall scope of life’s choices. But, I chose to embrace what life I have left and have had many ‘special moments’ that I might not have considered had I not been forced to look over the edge of life.
 
It is good to keep aware of the fragility of life on a frequent basis. It is so easy to let it become buried in the constant barrage of daily activities and events. If you allow that to happen, it will be over and you will have missed out on the best parts of it.
 
When your life is being thought about or discussed, most of that process will be about those ‘special moments’ you had in life. I hope you all have many of them.
 
I would like to wrap up this article with a tag line I have stolen from Buck Martin, a fellow author in Whispers on the Web. It pretty much says it all…
 
"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, totally worn out, leaking oil, and proclaiming, "WOW, WHAT A RIDE!!!"

 

- (Bill McKenna-professional motorcycle racer)
 

 

 

Welcome To Our New Members:

 
I would like to welcome all new laryngectomees, caregivers, vendors, and professionals to WebWhispers! There is much information to be gained from our website, especially our Library, and from discussions held by our members on the email lists. Needless to say, we also hope you will revisit our newsletters.
 
Pat Sanders, WW President
 
 
We welcome the 30 new members who joined us during June 2007:
 

Felix A. Anderson
New York, NY
David Bachtel - (Caregiver)
Verdunville, WV
Hilda Bachtel
Verdunville, WV
     
Stephen Beardsley
Camas Valley, OR
Victor Cerami - (Caregiver)
Lynbrook, NY
Dave Clutter
Washington, PA
     
Mark Anthony Davis
Philadelphia, PA
Jennifer Dratch - (Caregiver)
Brooklyn, NY
Robert A. Evans
Naples, FL
     
Arthur J. Hoffman
Edgewater, FL
Deborah Hudson - (Caregiver)
Johnson City, TN
Jimmy Hudson
Johnson City, TN
     
Marie Jette - (SLP)
Boston, MA
Mari L. Kelly
Decatur, GA
Debi LaForge - (SLP)
El Dorado, KS
     
Robert E. Osborne
Philadelphia, PA
Sandy Radke - (LPN)
Dubuque, IA
John M. Richards
Fredericksburg, TX
     
Elisa Rizzo
Brooklyn, NY
David J. Reid
Peoria, AZ
Sheldon Schultz
Manteca, CA
     
Geri Sellars
South Dennis, MA
Joe Spence
Kanata, Ontario, Can.
Robert Spencer
Oak Lawn, IL
     
Robin Stenger - (SLP)
Cleveland, OH
Virginia L. Strickland - (Caregiver)
Westville, OK
Robert H. Sugarman
Plymouth Meeting, PA
     
Mihailo Vojvodic
Beograd, Serbia, Europe
Stephanie Wambolt - (SLP)
Lower Sackville, Nova Scotia, Can.
Elizabeth Zumwalt
Blountville, TN
     

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
 

 

 

Disclaimer:
 
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
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.
 
  © 2007 WebWhispers
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