whispers on the web - july 2013 · whispers on the web - july 2013 6/28/13 11:15 am ... reading an...

6/28/13 11:15 AMWhispers on the Web - July 2013

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July 2013

Name Of Column Author Title Article TypeNews Views Pat Sanders We Get Letters News & EventsVoicePoints Jodi Knott Voice Institute Education-MedBetween Friends Donna McGary Spectacular Spokane CommentarySpeaking Out Members Experiences in Spokane OpinionThis Lary Life Ed Chapman Emergency Action for Laryngectomees EducationTravel With Larys Pat Sanders Spokane Tours PhotosThe Speechless Poet Len A Hynds A Very Hard Man Prose & PoetryBits, Bytes & No Butts! Frank Klett Improve Your Hi-Tech Gadgets! Computers

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We Get LettersWW at the IAL

At our WW Awards Dinner, We honored one of our longest term members, Ann McKennis, and on her Certificate ofAppreciation, we copied a letter she had written in 2006 to Dutch after learning that he did not have long to live:

"I have been a Registered Nurse for nearly fifty years, most of those spent with ENT and head and neckpatients. I am privileged to have known the best nurses in this field, not only in this country, but in the world.I also have had the honor of knowing and working with many of the best and well known otolaryngologydoctors in the country. I can say, without a doubt, that they have made a significant impact on patients, butNO ONE has impacted the lives of laryngectomee patients like you have. You have done more than any of usin the profession and have touched more lives. I commend you and all the work you have done. We all oweyou a debt of gratitude. You have made such a difference to people all over this wide world. I think I learnedas much from WebWhispers as I learned from the dozens of text and reference I read. It is the best resourceavailable to the laryngectomee, family, and caregivers. Thank you from me and all my nursing colleagues.You have our gratitude and our respect."

We just received this wonderful letter from her:

I have been a member of the IAL for nearly 20 years and WebWhispers since it was new, but had neverattended the IAL. I was asked to speak as part of the IAL with Candy Moltz and decided it was an opportunity



attended the IAL. I was asked to speak as part of the IAL with Candy Moltz and decided it was an opportunitynot to be missed. I had a wonderful time and it was a joy and a blessing to meet so many wonderful people!

I really wanted to meet again with Pat Wertz Sanders as she has been a role model for me and I am in awe ofher knowledge and caring. Like Dutch she has made a difference in my life and career. As many of you know,I am retired operating room nurse who spent nearly all of my career working with ENT and head and neckpatients. What I have learned from WebWhispers is amazing and I am very grateful for this site which I writeabout and recommend to everyone it might help.

Since I have retired and am no longer in the clinical setting, I rarely post on the site. However, not a day goesby, whether I'm in this country or abroad that I do not read it. I call it my daily devotional. For all of you I wasfinally able to meet, it was fantastic. Thank you for your dedication and motivation. If you are near Texas nextFebruary please consider attending the TX Laryngectomee Conference. We have a great time and wouldwelcome you with open arms!

Again, thanks to everyone for a wonderful conference and allowing me the honor of presenting. Have ahealthy, happy and safe summer.

Best regards,Ann McKennis, RN (retired), CNOR(E), CORLN(E)The Woodlands, TX [email protected]

Feedback from Whispers on the Web

I suppose most of us take the newsletter for granted and forget to show our appreciation for the hard workput into it each month.

All aspects are favorites of mine but I have found the Vitamin D articles most helpful and interesting. Afterreading an article in Web Whispers several months ago about Vitamin D deficiencies, I decided to talk withmy oncologist from my recent breast cancer. After testing me for D deficiency, it was discovered that I wasindeed low. The oncologist suggested starting out with the suggested higher dose and test again in threemonths. My reward was more energy and mobility from aching leg muscles.

Thank you for all the time and effort in putting together the monthly newsletter. Writing a couple of articles amonth for area newspapers myself tells me that you must also have a great feeling of accomplishment withthis service for others.

Marian Cure2009

Marian, We are so happy that you found our articles useful. Several of us had discovered that having the test andadding Vitamin D in theraputic doses for a period of time, made a difference in our daily health and strength. So gladto have it confirmed again. Thank you so much for writing.

Enjoy,Pat W SandersWebWhispers President




Voice Institute

The IAL hosted another fabulous Voice Institute/Annual Meeting this past June 5-9, 2013 in Spokane, WA. There weremany highlights; Spokane was exceptional in every way; beautiful weather, architecture, and physical beauty. The



many highlights; Spokane was exceptional in every way; beautiful weather, architecture, and physical beauty. Thedowntown park and river were located beside the hotel and many activities were within walking distance.

The meeting was well attended, including speech pathologists, speech pathology graduate students and laryngectomizedindividuals. The Voice Institute hosted approximately 100 attendees. This was comprised of 54 graduate students from 6universities, 18 LTs, 6 SLPs, 17 VIPs.

The local laryngectomy support group from Spokane, spear-headed by Susan Bruemmer, SLP and Ed Chapmanprovided tremendous support to the IAL. The success of operations were in part due to their hard work and dedication.

An important topic of discussion was added to the venue this year. Emergency resuscitation remains an important issuefor all of those who have undergone laryngectomy, as well as their family members. Susan Bruemmer , SLP provided apresentation to the local EMT and emergency personnel from the Spokane area. This was an excellent addition to the IALmeeting and I believe, a necessity for IAL annual meetings in the future.

Another addition to the schedule this year was the topic of lymphedema. Lymphedema is a condition that occurs afterinsult/injury to the lymphatic system, resulting in a collection of fluid within the skin. Brad Smith is a speech pathologistand certified lymphedema therapist from MD Anderson Cancer Center. Brad’s presentation was specific to head and necklymphedema. Lymphedema can be treated with specialized “massage” techniques and compression garments. Themanagement of lymphedema requires specialized training. His lectures and break-out sessions were very popular andwell attended. Most of the participants were not aware that a speech pathology could be certified to provide this type oftherapy.

The IAL would not be possible with the support from all the vendors! The vendors are truly experts in the field of voicerestoration following total laryngectomy. The vendors were gracious with their time and supplies for the meeting. Thankyou!

I would like to take this opportunity to thank you for allowing this wonderful opportunity to be the Voice Points coordinatorfor the Web Whispers for the last 2 years. It has been great meeting and speaking with many of you! Thank you to PatSanders for being so kind and easy to work with!

I have the privilege of becoming the VI director for the IAL, officially taking office this month. Therefore I will be “passingthe torch” here for VoicePoints to my colleague and friend, Kim Almand. She is a fabulous speech pathologist from TN,has been actively involved with the IAL VI for many years and will be an excellent asset to WebWhispers!

If you have not had the chance to attend an IAL annual meeting, I encourage you to do so. It is a wonderful learningopportunity… and a lot of fun!

Hope to see you all in Buffalo 2014!

Jodi Knott, M.S., CCC/SLP



Spectacular Spokane

At first when I learned the IAL would be in Spokane this year I was unimpressed. Spokane just wasn’t all that interestingto me. However, I hadn’t been to a meeting in several years and wanted to catch up on things in the Land of Lary and seemy friends so I decided to bite the bullet and make the long trip. Boy, am I glad I did! I owe that city and its graciousinhabitants an apology. I seriously underestimated Spokane’s appeal. From the gorgeous parks, a real downtown withgreat shopping including big city department stores not just the mall versions plus fabulous restaurants, all within walkingdistance of first class accommodations, to an ENT Center that I wish could be cloned and brought back east. I couldactually see myself living there. The only drawback that I found was being from Maine I don’t think I could ever live thatfar from the ocean or my sweet grand-daughters. Still, 30 minutes from downtown and you’re in rich rolling farmland withalpaca farms, wineries and spectacular countryside views is pretty compelling. Plus I hate to admit it but the people reallyare friendlier than my fellow easterners. So, consider Spokane for a few days at least if you are heading out to the PacificNorthwest. I would go back in a heartbeat!

But really the best part of an IAL meeting is about seeing all those special friends. After my first IAL in Boston back in2005, I wrote that it was like summer camp for larys. I still think I was on to something there. Back when I was a kid Iloved sleepover camp. I got to act out a bit and being the School Superintendent’s daughter that was huge! Plus nobodyknew me that way. I was accepted just for myself. The first time you walk into a hotel full of people buzzing and raspingand coughing and breathing through a hole in their neck, and you realize you aren’t the only one, is a powerfulexperience. We are among our people. We are accepted and recognized. We are not alone.

I first met Linda and Miguel on the WW Panama cruise in 2004. We became fast friends. You know that moment whenyou share a joke and suddenly you know a new friendship has blossomed? That was us. We have tried to get togetherevery year or two even though we live 3000 miles apart. Plus there is my “Big Sis, Libby”. She and I share the same oddcancer and she introduced me to WW. Now she and her husband, John, are wonderful friends. They in turn became goodfriends with Linda and Miguel when they all went on a cruise that I was unable to go on. Unfortunately Libby and John are

no longer able to travel long distances but we all still stay in touch.

I usually room with Pat on cruises and at the IAL. She is both a treasure and a force of nature. Sometime I wish I had abutton to turn her off but there is no mistaking her dedication and zeal for WW. This year Sunny Bakken joined us so



button to turn her off but there is no mistaking her dedication and zeal for WW. This year Sunny Bakken joined us sothree women in one room was a real trip and lots of fun even if I did get “grounded” for staying out a little bit past mycurfew one night.

This year while many faces were missed, I did get a chance to finally meet some folks in person who I only knew by namevia the web and that is always such a treat. And while working the WW table a fellow came up and asked me if Iremembered him. Well, of course, it was Dennis Holte, from Boise, Idaho who I hadn’t seen since the Chicago IAL. Heand his wife Mitzi were brand new in 2006. Dennis had been a lary for only a few months back then and had the mostamazing TEP voice and still does! He wrote a great article for this newsletter called “Just Your Basic Plumbing Job” whichyou can read here: http://webwhispers.org/news/jan2007.asp I was thrilled to see them both doing and “sounding” so well.

Other highlights of this year were the escalating teasing of Sunny by Ed Chapman – I can’t wait to see that payback andhaving Naughty Jim Lauder fix my buzz (AKA give my Servox a tune-up. Thanks, Jim, you are a gem!). Plus the food thisyear was especially good at both the IAL and WW banquets and Richard Najarian did another outstanding job ofproviding the cocktail party beforehand.

So like we used to sing around the campfire at Girl Scout camp...Make new friendsBut keep the old.One is silverAnd the other, gold.

See you next year in Buffalo!

Experiences in SpokaneJust returned from the IAL Meeting in Spokane and was very impressed with the great job Ed Chapman and hiscombine of WA clubs and volunteers did. Possibly the best meeting I've attended in 4-5 yrs. Having said that I'dlike to invite those that also attended to give us a brief report/highlight about your experience, something specialthat was said or happened, or even a suggestion for those that may attend or host a meeting in the future.

So, for the July "Speaking Out" question, please share your experience at the Spokane meeting or WW Dinner.Would love to hear from anyone that attended; Lary, spouse, speaker, SLP, vendor, etc.Jack Henslee

http://webwhispers.org/news/jan2007.asp



Ron Mattoon, Seattle, WA - 2010

The IAL conference was GREAT. I always learn so much, but seeing and meeting the people is the best part. All of this isthe obvious but there are so many things that happen behind the scenes that no one hears about. Things like thelaryngectomee, who has never attended a support group because he did not know there was one in his area and findsone through the conference. The people that get help during the hands on sessions, help that guides them to a resolutionof issues they have been dealing with. Even some that make contacts to get help when their doctor told them there wasnothing he could do. I know this happened because I have seen them or have been involved. These are the untold storiesfrom the conference that may even save lives.

The attendance by the SLP students is also very important. I enjoy the energy they add to the meeting and It is good thatthey get firsthand knowledge that will help so many others.

It was commented that people come to the conference year after year, because once you come, you become part of thefamily. This is true. The people you meet often become friends for life. We feel that way and we plan to attend next year. Iknow we will not make the conference every year but we will be saddened about the ones we miss. Thank you toeveryone that puts in the time to make this happen.

Logan Grayson

I just want to say what a good program that the IAL put on in Spokane this year. This has been the 3rd one I haveattended and I think the best so far. The banquet dinners that were put on by IAL and WebWhispers were bothoutstanding. I had the pleasure of sitting at the WebWhispers table and showing off the items that were avaliable for adonation to WebWhispers and talking with all the different people that stopped and looked. I met a lot of new people andgot to visit with old friends and am looking forward to the IAL that will be held in Buffalo, NY, next year.



Jeff Vanden Hogen, Appleton WI - 2005

We had very nice 5 days in Spokane, good weather, good people, good time. On Wednesday, my wife Viv and I went onWebWhispers Tour, the first stop was SuperSuris Alpaca Ranch they were very cute, second stop was Ellie’s Edibles,Divine Caramel Creations, where we got to taste some caramels, and the third stop was Arbor Crest Winery at the CliffHouse for some wine tasting and a great view.

On Thursday and Friday we were at the WebWhispers table talking to members and answering questions. We also gotsome grad-student SLP’s stop by and ask questions.

I am one of the many volunteers it takes to run WebWhispers and we are always looking for more. I am one of four ListManagers and my job is when a new member application comes in, I get them signed up to the Daily Whispers Email Listand get then into our Database. I am also a backup Moderator helping out when needed.

Next year the IAL will be meeting in Buffalo,NY, in June and can’t wait to see friends we made over the past sevenconventions and to meet new friends.

Frank Klett

I was not able to attend the IAL conference this year, but I had a need to go there to resolve a problem I have had. I hadbeen unable to locate a source for a replacement bottom to my TueTone EL, which is my primary voice. I finally had athought of asking someone to look into finding a source while at the IAL Conference. One thing I did not want to do wasimpose either cost nor time to anyone, so I was cautious of who to ask and just what to request. I finally asked the Wizardof Stomaville, Mike Rosenkranz, for his opinion and he said “No problem, I can do that”! Well, of course, I took him up onhis offer, but again emphasized that I did not want him to go out of his way or have any costs to him.

I thought I would wind up with a name, website, or phone number of a firm that could sell me the part I needed, but "NO!".In typical Mike fashion I wound up with the exact part I needed and at no cost to anyone. Mike had used his negotiating

skills and procured the part from the TruTone rep and then he had the hotel ship it to me at no cost. The generosity ofboth the TruTone maker and the Hotel was a wonderful bit of news and to them my very grateful thanks.

Mike is another story...there is no "Thanks" enough for this wonderful gentleman for his giving and fatherly wisdom. I canonly wish Mike the very best of everything in life.



Harry Jensby, Athens, GA - Jan 2005Gail Jensby - Caregiver

Hello all, just a few lines about the IAL meeting in Spokane, Washington. My wife Gail and I went a couple of days earlyto explore the area. We found it full of history and friendly people.

Must give Ed Chapman and his voice clubs a "pat on the back" for a job well done. Every time we saw Ed he was runningto make sure all was well. There was something to learn in all meetings attended from swimming to stoma care to blowingbubbles to conversation at the dinner table. Had a great time and learning experience with all the slp's who are training forour future care.

For all who couldn't attend this year we hope to see you in Buffalo next year.

Sunny Bakken, Center Point, OR - Caregiver Volunteer

I knew I was going to meet some amazing people and I was not wrong!! From Pat Sanders, whom I've talked to since2006, the numerous volunteers that I volunteer with and exchange emails with, the members, whose names I've seen thelast couple of months, as payments came in. It's simply amazing when you can put names to faces and personalities.

Pat, Donna McGary and I shared a room….believe me, we three thought silently, "Is this going to work?" Three women ina room with ONE bathroom….it was awesome! Like Donna said it was like a "Girl Scout Camp Out", talking way into thenight. Had to ground Donna for breaking curfew one night….a story for sure!

Some have asked why I still volunteer for WW after my husband, who was a laryngectomy, passed in 2007.WebWhispers is just too important to walk away from. Now, after this wonderful experience, I was/am humbled to be ableto do what I do. Aloha, Sunny

(Editor's note: Sunny is our VP of Finance & Administration... our first non-lary VP, a wonderful volunteer and a fun lady!)



Sally North

At the Spokane IAL, WebWhispers organized tours on Tuesday and Wednesday, before the Conference. We went to seean Alpaca farm and a Winery. All in all the tour was a success and we also saw quite a bit of Spokane. I only wish that Ihad known of the other tour before I made my airline reservations. I would of liked to have come a day earlier to go on it.But it was a very successful IAL and the Web Whispers Dinner on Thursday was one of the highlights of the conference.

Carl van Rossum, Edmonton, Canada - Feb 2012

Report on the IAL convention

Quality speakers, quality organizers, quality venues, and all that with maintaining a very informal, welcoming atmospherefor a newbie like me. Appreciated also the ample social time.

It was, and is, inspiring to meet so many laryngectomees who are making the most of life. I met sóó many beautiful people. Happy putting faces and eyes to the names on the WebWhispers.I am proud to be part of such a group. Not better than any other group, just making life more important than thechallenges we face.

It was inspiring to see so many people using esophageal speech as first method.I was also surprised so many using electro larynges, and that I could understand much more than I expected.This made me realize the importance and do-ability of learning a second method of speech besides my TEP.

The Voice Institute was very educative for me as a non scientist with keen interest in my situation.Some lectures were a bit too dry and academic, but most of them I enjoyed. They were really easily connected to my ownexperience, and expanded on what my SLPs told me, and I remember from high school.

The “hands on” sessions in small groups, lead by an experienced SLP from the faculty, with half a dozen SLP studentsand a few laries were very educative too. Plus I got to try out a bunch of different adhesive options, and am now closer toa solution for wearing an HME on my irregular stoma area. And found out the Provox handsfree is much easier to use for me than my InHealth one.I also learned, and practiced, the basic principles of how to inject air for esophageal speech.Now the letting out at-will is my next step, (burp) ;-)

When I lost interest in the lecture I walked out of the room where I discovered a whole other world was going on. Therewere seven or eight different suppliers, all very friendly and helpful and giving out freebees. But best of all just so many



were seven or eight different suppliers, all very friendly and helpful and giving out freebees. But best of all just so manyfellow laries, from all walks of life and different histories. All very open to share their insights into solutions they found, inmaking the best out of life, in spite of our challenges.

With the great peer support I finally felt safe to try out swimming again.

The banquets were delicious and the music and dancing was great. That I got to sing my “Laryngectomee Blues” with theband was just more icing on the cake.

It was a wonderful experience for me.

PS: anybody who recorded my song, could you contact me directly? [email protected]

Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month. Staff of Speaking Out

Class: Emergency Action for Laryngectomees



The Spokane Class presenters are (from left to right): Pat Sanders, Bob Herbst, John Ready, Dr. Brian Mitchell DO,Susan Bruemmer CCC-SLP, Ed Chapman, Brian Shute Ph.D., CCC-SLP, Tammie Drapeau Paramedic, FieldTraining Officer (background), Brenda Hansen RRT-NPS, NREMT (forefront).

The Southeastern Washington and Spokane Laryngectomee clubs with the support of the Seattle group and theOregon New Voice Club hope everyone enjoyed the Annual Meeting/Voice Institute as much as we did bringing it toyou.

We feel the venue and overall program was very enjoyable. Particularly the nearness of downtown, the River Front

Park and many restaurants and shops. The weather was very cooperative, sunny and warm. Of course we are just alittle biased. We will let others grade us on that.

Some of the highlights of the week were:

The "Emergency Action For Laryngectomees" class. This class was presented to 50 students that included EMT's,Paramedics, grad students and emergency room personnel. The feedback so far received from the students was verypositive as well as those larengectomees that sat in on the program. The presentation was filmed and we, hopefully,will have it available within 6 months on line at the Webwhispers and the IAL sites. We will also have the power



point presentations used available. The comments were such that we hope this program will be part of thepresentations each year.

The bar-b-q in the park held afterwards was not well attended by the students of the class so we had plenty for othersto enjoy.

I heard many compliments on the tours that Pat had lined out and will let her elaborate on that.

The VI classes held at the college, I understand went well and both those and the TEP clinic at Spokane ENT, beingwithin walking distance, went smoothly.

We felt the Webwhispers reception and banquet on Thursday night was well attended and, from what I hear,enjoyable to all.

Friday afternoon was an off day for the annual meeting participants and many enjoyed the park, the casino and thedowntown. I saw many tired folks returning from their own tours. The hotel offered shuttle service within an area of2.5 miles of the hotel which opened up the possibilities even more.

The IAL banquet was well attended and after the auction was finished up with a great band (one of whom is aWebWhispers member) that seemed to be enjoyed by all.

Although most participants returned home on Sunday there were many that stayed and enjoyed the area clearthrough to Tuesday.

A big thank you to all the volunteers, businesses and community services that helped to put this on.

All and all we think it was a very successful meeting and hope those that attended also did.

Ed ChapmanPresident Southeastern Washington Laryngectomees.



Spokane Tours and Pics

Historic Spokane’s "Age of Elegance"and Lunch at the Fabulous Davenport HotelOn Tuesday morning, we took in the rich history, historic homes and attractions of Spokane, where the Native Americansfirst arrived at the roaring Spokane Falls and Riverfront Park.Then up "The Hill" where views of the city, beautifulmansions and the majestic Saint John's Cathedral are located. Toured inside this Gothic style Cathedral with fabulous wood carvings and stained glass windows.On to Manito Park with different types of Gardens and a flower-filled Conservatory. Lunch was served at the renowned elegant Davenport Hotel, Spokane’s jewel dining in the FireplaceLobby. Then to see to see Bing Crosby memorabilia and pass by Bings’ childhood home.The bus was equipped for us tohave members who used wheel chairs and walking aids.



Green Bluff Orchards and Arbor Crest WineryWednesday, we visited the unique area of Green Bluff where over 30 small growers and ranchers open their doors to thepublic. First, at the SuperSuris Alpaca Ranch, where we fell in love with the adorable suri alpacas and their babies, a less common breed of alpacas, with silkier fleece and we browsed through their boutique, with high qualityclothing and gifts made of alpaca fleece. Next, a treat for our taste buds at Ellie's Edibles to sample some of thecaramels, including their No. 1 seller, sea salt caramels. Last stop was at Arbor Crest Wine Cellars, located at the RibletMansion, perched on a rock 450 feet above the Spokane River and a perfect spot for a wine tasting. Tour of the grounds,including; a 16x16’ checkerboard, cement pool, overlooking the cliff, used for swimming in the summer and ice-skating inthe winter.



A Very Hard Man

It was in 1954 that I had dealings with a certain villain for the first time. He ran a haulage business but I will notmention his name, as at the last time I heard, his grand-son now runs the business and who probably has no ideawhat a reputation his grandfather had.

This man had been pointed out to me on several occasions as being a big league player and not the normal pettycrook. He had the reputation of being very hard, one to be wary of, and suspected to be in the armed-hold-upcategory.

One night on the beat, walking in for my break, I was walking past his house and saw that all the lights were on. As Igot closer, I could see him sitting on the low wall at the front, with his head in his hands, and his body appeared to beshaking. I stopped and asked him if he was alright, and looking up and seeing me, I realised that this very hard manhad been crying. He told me in a broken voice that his baby son was dying in the house, that all the family had



had been crying. He told me in a broken voice that his baby son was dying in the house, that all the family hadgathered, but he just had to come outside. He said that he had tried to get a doctor but had been unsuccessful, andambulances would only attend if ordered by a doctor, or if there had been an accident.

I took him inside his house where lots of family were gathered around his wife cradling the baby in her arms. Thebaby had a very high temperature, was shaking occasionally, and the little chap’s eyes were rolling. I thought it wasinfantile convulsions, but had no idea how to deal with it. I quickly wrote a note giving it to one of the men there to runall the way into my station for the Sergeant to send a car quickly to pick up the police surgeon and bring him to thehouse. This of course was in the days before personal radios and a policeman on the beat was strictly on his own.

I knew that the babe’s high temperature had to be reduced quickly, so getting the baby’s bath filled with water at bodytemperature, I took the babe’s clothes off and holding him, immersed him gently up to the neck, whilst applying a coldcompress to the forehead. The convulsions stopped, and taking him out I dried him, just wrapping him in a blanket,and giving him back to mum. The convulsions started again, so I repeated the immersion into warm water with thecold compress held against his head. Again the convulsions stopped, and again I took him out, dried him and gavehim back to mum in that soft blanket.

By the time the doctor arrived he appeared to be sleeping peacefully, and I wondered if I had done any good. I feltquite relieved when he said I had done well in the emergency situation.

The family was profuse in their thanks and the young mother buried her face in my shoulder weeping with gratitude. Iremember I looked at the father and thought, “The next time you do an armed robbery will you hesitate if a policemangets in your line of fire?” By the look on his face I thought he might.

It may be complete co-incidence but that man never came to the notice of police for the rest of his life.



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