December 2008

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Changes Go On News & Events
Voice Points Lisa Proper Dilemma Part II - Response Education-Med
Between Friends Donna McGary Thank You Editorial
Practically Speaking Elizabeth Finchem Communicating Without Words Experiences
A Scottish Accent Rosalie Macrae Hip, Hip & Three Buzzes Anecdotes
Voice Of An Artist Avraham Eilat Artist As A Young Lary Art
Travel With Larys Jack Henslee The Promise Experiences
New Members Listing Welcome News & Events

 

 

 

 

Changes Go On All The Time

 

As we have grown through the years, we have made appropriate changes. We had every member's address on each email back in 1997 but we discovered the problems that came with that and, early in 1998, we found exactly what we needed and started an email list, WebWhispers.

We tried a new list, WWHealthHelp, for one purpose but when it didn't work as we hoped it would, we turned it into a professional list. There are still plans for that list. We are nothing if not adaptable.

When our website became an impossible chore, trying to make every change on every page with manual postings, we overcame our normal reluctance to spend extra money and made an investment in the future with a specially designed website. Wow! has it paid off!

Through the years, you may have noticed lesser attention-getting changes when finding new pages set up in recently established sections on the website. Our Hints section went to a full blown Information Library that is still growing and changing. Our monthly newsletter has a new contents Index.

We added new ways of keeping member information in our database and updating the website information available to you twice a month.

We recognized a problem with new members being announced, each in a separate email, as our membership grew. A couple of years ago, with hardly any comments, we switched from that to making one announcement per week on who had joined that week. We have listed them in the Members Area as they come in. We have been listing the obituaries as each comes in but we have known for some time that this would have to change. We started this week to send those out in the same weekly notice and that will become a weekly membership report. We will likely follow the pattern we have with new additions,that is, have a page with the notice added daily with the final list being honored on our Memorial Page, another item we added through the years. Details will be worked out and it will just happen.

We have another problem. That of addresses that are no longer active. The emails bounced, so they had to be removed from the list. We have retained the records of their membership by writing bad- in front of their last known email address. We have about 300 of them. Some of these are deceased, we think, but we have no confirmation. Some are probably back working and don't want to receive emails. We have not wanted to drop anyone who changed their name or drifted away or might just have changed their email and never told us. Many will come back as soon as they have a question. We'll be here for them

A support group has to support in many ways and maybe this is something we had to learn.

I am spending part of my time over these holidays, giving thanks for our volunteers. Remember that WebWhispers is run by volunteers, some of the hardest working people I know. Every time you ask for something, you should thank them for what they do for you to be able to have WebWhispers. They are spending their own time to look up something, to enter or change your records, or answer a question, while others are writing articles, researching new Library information, working on the website.

The view from this date is that the four who have been running for re-election will be with us another 2 years. Congratulations to all and we will all benefit by having them continue using their time with this wonderful support group.

 

Enjoy,

Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S

 

(LisaProper@gmail.com)                      [© 2008 Lisa Proper]

 


Dilemma: Part II – The Patient Response


Lisa M. Proper, MS CCC SLP; BC-NCD; BRS-S



Last month’s article presented a dilemma in which I asked for responses from the readers. Although I did not get as many responses as I hoped for, the ones I received were very insightful and I believe will help those Speech Pathologists who find this particular situation difficult. I will first remind the reader of that particular dilemma.

The dilemma: “A patient undergoes a total laryngectomy procedure. The patient is referred to the Speech Pathologist postoperatively either as an inpatient or as an outpatient for post-operative laryngectomy rehabilitation. The referral is strictly for esophageal speech training ONLY. The physician is adamant that there is to be NO training in the use of the artificial larynx. Additionally, surgical voice restoration in the form of tracheo-esophageal fistulization will not even be considered until well into the second postoperative year.” (If you would like additional information, please refer to last month’s article.)

The reason I presented such a scenario was not necessarily for my personal edification, but for the speech pathologists out there who feel bound to abide strictly to the orders of this physician. It is my hope that this article and the following responses will provide the Speech Pathologist with motivation and/or empowerment to do what I believe, is in the best interest of the patient.

The Patient Response: To no surprise, the overwhelming results are that patients do not want to be kept in the dark! That alone should provide the speech pathologist with the entitlement to provide more information to the patient. Only one patient presented with an understanding why an MD would do such a thing, yet this patient was not at the receiving end of such a scenario. I will present this position as well.

DR presented several points which were reiterated by several individuals so I will begin presenting the patient response by utilizing his reactions:

DR as well as most of the responding laryngectomees found the entire scenario “disturbing”. DR particularly was disturbed with any physician who believed he or she had the “authority and/or audacity to make such a decision on behalf of the patient, except in cases where there were physical conditions that would prohibit the possible implementation of the other alternatives.” However, DR points out that even in such cases that “the physician should have NO authority to prohibit the patient from being made aware of the other alternatives”. Despite any physical restrictions, the patient should still be allowed to know the choices of rehabilitation options which fall within any physical constraints the patient may face.

DR and others raise the question whether or not this particular physician behavior is approved and/or condoned by the various medical associations and their respective boards of ethics. If such behaviors are condoned, DR suggests that a concerted effort, by both lay and professional organizations, occur to have such policies rescinded. Fortunately, I do believe that the actions and beliefs of the physician presented in the dilemma are limited and far from the norm of most physicians and luckily we most likely do not need such action. Conversely, many laryngectomees state that, if this is an ongoing and unswayable position of this particular physician, they question if this constitutes malpractice? Should this be reported to the medical community that governs the physician? Unfortunately, no lawyers or MDs responded, so we don’t know the answer to this. However, the fact that this issue is even remotely questioned by the patient should inspire the speech pathologist to question such orders and discuss them with the physician. On a similar topic, laryngectomees do empathize with the Speech Pathologist who may encounter negative consequences by not being in agreement with the MD but, at the same time, your patient still wants you to take action whether it is with the physician directly or an appropriate governing body. Most laryngectomees expect the Speech Pathologist to be their patient advocate and many see their SLP as their “go between” with the physician and expect a good working rapport between all their healthcare professionals. As we all know this, unfortunately, is not always the case, although it should be what all those who work in the area of laryngectomee rehabilitation aspire to.

Overwhelmingly, all patients believed that the choice regarding their particular method of communication should be his or her own decision, not the physician’s, not the spouse or family nor should the decision be that of the speech pathologist. Nevertheless, in order for the patient to be able to make an informed decision regarding their own personal care, the patient is in need of education and advice from the various healthcare professionals involved in the patient’s case. This education should be informative and nonbiased. The advice should also be informative and nonbiased but with specifics regarding the patient’s particular situation being taken into account. Many times, patients will ask the healthcare provider “What would you do?” – The healthcare provider needs to answer this question carefully as not to bias the patient. One may deem that the appropriate response to this question may be better left unanswered. DR does thoughtfully add that “only if the patient is not willing or able to make such a decision should it be made by others” and in this case, there should be more than one person involved in the decision making process. These individuals need to be a mixture of thoroughly trained professionals in all phases of laryngectomee rehabilitation as well as family members or patient advocates.

The absolute need for a pre-operative consultation with Speech Pathology was mentioned several times by patients. Words such as “urgent”; “priority”, “vital”, “critical” and “essential” were utilized to stress the high importance that patients put on this absolutely necessary practice. DR and others like him believe that this pre-operative consultation “is equally as important to a laryngectomee’s recovery and rehabilitation as post-operative care”. This is quite a bold statement and initially I was a bit uneasy about publishing it despite my own belief of the absolute and essential need of this pre-operative consultation. However, when I think of the pre-operative consultation as the education session which provides the patient with the information to make informed decisions regarding his/her own rehabilitation and health management, I guess the statement may not be that bold after all.

Many patients mentioned that they were unable to achieve esophageal voice due to physical constraints and they either were not a candidate for a TEP or they did not desire a TEP. If they had the unfortunate luck to have this particular physician presenting us with our dilemma as their own ENT, their only way to communicate for a minimum of a year would have been via writing and/or gestures. Imagine yourself with no way to verbally express yourself for over a year. Most Speech Pathologists can’t even begin to put themselves in this position as most of us love to talk! So, why then would any Speech Pathologist unquestionably accept an order from a physician which would possibly put the patient into a position of being voiceless for a minimum of a year because that is the “number” the physician chose?

RB points out that she believes “it is important that every laryngectomee learns more than one form of speech”. Due to physical problems RB has only the use of the Artificial Laryngeal Device. Although she is very comfortable with her ALD speech she states that she “sorely wishes” that she “could have a back-up, but can't”. Her case is a little different than the scenario with regards to a “back-up voice”; nevertheless she raises an excellent point. Let’s say a patient developed proficient esophageal speech and then developed a temporary (or even permanent) medical condition (for which there are many) that would not allow for esophageal voice use. The patient would once again be “voiceless” without the back-up of an ALD.

RB also points out an obvious but often overlooked position. The patient does not need to rely on others to be their healthcare advocate; the patient should discuss their situation with his or her doctor and inform the physician that they want to learn other forms of speech. She suggests that the patient needs to make the doctor understand the personal importance of being able to vocally communicate while learning esophageal speech. I believe RB is absolutely correct in this recommendation. I trust that most MDs when directly confronted by the patient themselves for a reasonable request, would find it difficult to deny. If, however, this conversation does not end in the desired outcomes, remember a patient is a healthcare consumer and. as a consumer, has the right to choose where they do business. One would not hesitate to visit another store or restaurant if one is not happy with the service or goods of those institutions, yet, we tend to shy away from shopping elsewhere for healthcare. Many times a second opinion will yield nothing more than the same results but in the long run, this knowledge will at least give peace of mind to the patient.

There is one last patient perspective that will be presented. This is from BL and his response demonstrates understanding of the “dilemma” physician’s point of view. In BL’s case, he reported that he was first given an electrolarynx and perfected this form of communication. Approximately one year after surgery, BL began esophageal voice training. BL stated that he found that he “wouldn't practice as much at home as was ordered by the SLP, because it was just plain easier to grab the ALD and speak”. He questions if maybe he was “just plain lazy” and further states “it was much easier to use the ALD with instant results”. BL suggested that perhaps the doctor in the dilemma scenario “was aware of this potential problem, that's why he wanted the patient to learn esophageal speech first”. While I agree with BL that his premise of the physician’s position is a correct one, this premise has been disproved in the medical literature, something the physician should know. The other point which BL brings up is “being lazy” and, while I don’t know BL personally, I doubt that this is the case. After all, he did become proficient with ALD speech. While beginning any new endeavor, one must be motivated, wanting to do this for themselves, not for anyone else. Not only are desire and motivation necessary but commitment and being at the correct time in your life are also important to achieve one’s goal.

Motivation and commitment are needed in each new thing we initiate: golf, learning a new language, dieting, learning to paint, or taking on other new projects. The motivation for these might be wanting to improve your physical and mental health but your commitment could be lessened by the other demands in your life: work or family responsibilities. The commitment could even be a promise to yourself that each week, you would devote a number of hours to this. Recently, I began learning how to throw clay on a potter’s wheel. It is technically challenging, requires multiple steps to remember, a multitude of skills and techniques to master. I am motivated to become proficient at throwing clay and I can see progress, but not always “steady” progress. Sounds a bit like speech training.

Learning speech after laryngectomy, no matter which method is chosen, is full of multiple steps of skills and techniques to master. The desire and need to speak again creates an instant powerful motivation but the commitment needs to be constant and refreshed. If the task is difficult with little initial functional gain, the dedication needs to be greater.

Esophageal speech is one of those difficult to achieve desires. If you have the potential and you don’t pursue it, then, it most likely was not the biggest priority in your life at that particular time in your life. However, the important point to this discussion is that BL and all the other laryngectomees who choose to use the ALD versus esophageal speech, do so, not because they are lazy, but because they chose the ALD. The patient made the choice, not anyone else.

Speech Pathologists, who find themselves with this dilemma, need to heed the patient’s wishes for information and provide the patient with a minimum of complete education, so they can make an informed decision with regards to their rehabilitation desires and needs. As a whole, it does appear that patients believe their SLP should go even further than education and be their advocate with the physician.

In our next issue, we will address the SLP response, and make suggestions to help those of you who are uncomfortable with not following the MDs order as specifically directed.

If anyone would like to respond to this article, please do so. I also would like to hear from more speech pathologists. E-mail me at LisaProper@gmail.com


I want to thank everyone who responded to last month’s article. Especially DR; RB and BL!

 

 

 

 

Thank You

 

I recently reviewed the past year of Whispers on the Web; something anyone can do very easily now, thank you very much, Gary Metz. It struck me just how many talented people, in so many different capacities work to put out this newsletter every month. From Gary, who organizes things so that it is not all lost in space to Len Librizzi, who takes the modern equivalent of a pile of coffee-stained, dog-eared pages with red lines, barely legible notes in the margins and photos paper clipped to the top and produces the finished product you can enjoy the first of every month.


As much as I love and appreciate those guys, it is the writers who are the heart and soul of this endeavor. Looking back over these last twelve months, I am so impressed with the caliber of their work. Some of them would not call themselves writers; indeed sometimes I try to use the term contributor just so as to not scare off potential “enlistees to the cause”! I can’t tell you how many times someone has sent something in with the little note “I don’t know if you can use this…but I just wanted to say…” They are invariably wonderful. We have learned about lary plumbing and gardening and traveling. We have danced with and cared for loved ones. We have learned about strokes and talking and traveling. We have been to Scotland, Antarctica and Costa Rica. We have lost old friends, but made new ones. It has been a good year.


To all of you, our reluctant writers of 2008 - that wasn’t so bad, now was it? How about a resolution to do it again in 2009? I must make special mention of those stalwart troopers, Elizabeth Finchem Rosalie Macrae and Lisa Proper, who came through every month, thank-you, thank-you, thank-you.


I believe everyone has a unique story and that each story has value, but it takes some coaxing sometimes to get it written down. If you think about it, the internet is the great equalizer…all voices are loud and clear. Sometimes we bemoan the fact that we can’t be heard in a noisy restaurant or get a word in edgewise during a heated conversation. That is not a problem here…all access, all the time. Please think about sending us some of your thoughts over the next twelve months. Make your voice heard.


We welcome your suggestions and thoughts at editor@webwhispers.org

 

 

 

 

 

Communicating Without Words

 


As a practical matter preparing for this year’s holidays will take some thought and careful spending. On a recent trip I had plenty of time to think as I drove over 1,000 miles. My mind kept going back to the events of my first year as a laryngectomee to search for topics for this column that might help those who are struggling to communicate. Not just words, but sharing emotions, ideas or memories. Perhaps there is a need to find an outlet to just plain vent what is bubbling up inside. It may be anger, joy or in my case another way to go to my “safe place”; which happened to be a beach.


About six months after my laryngectomy, as spring broke though a rough winter, I signed up for a class at the Art Institute which was about a mile from my home. This was designed to be a class that covered the basics of sketching, drawing and painting in various mediums, described as a “try me” introductory class for beginners. My limited art instruction in school was just a smattering of what art can be.


I knew how to entertain my children as toddlers to keep them quiet in church or elsewhere by playing the “shape game”. It starts with having them draw a shape or two in the margin of the printed program or bulletin; a circle, triangle or square will do to get it started. Next I would take the pen and doodle until their shapes looked like an animal of some sort. My youngest daughter’s favorite was a squirrel with a big fluffy tail curved up and over its back.


Painting was always something I wanted to learn to do well. Paint by number was a way to get started, but now I wanted to learn how to move past the concept of “carefully coloring within the lines”. Have you ever been reprimanded for coloring outside of the lines? I have. This was breakthrough therapy for me on several levels. I was in my 40’s, and I was ready to create my own art.


Before I was five I could crochet a simple pattern and embroider the stamped cotton towels and pillowcases. Counted thread cross stitch was a wonderful concept for me as I could move to graph paper to create my own designs. Knitting was another creative design skill for me to learn as I worked with various yarns and patterns and launched myself into my own design. You can see why trying the Art Institute class was an obvious next step for me.


There were so many basic tips I picked up in this art class. It’s important to know about the right kinds of brushes and how to clean them properly, how to prepare paper or canvases, how to paint with the white of your paper for the most light in the finished product. Perspective, shading, and color co-ordination are all important basics when you take off on your own to paint what you think, feel or see.


One surprise for me near the end of the classes covering “still life”, “landscape”, “seascape” and “portrait” was our lesson with a live model to work on oil painting portraits. I had no earthly idea that I could produce an oil painting of a man that would look like my oldest son. The truth is he was very much on my mind at the time I was painting this picture. My message here is learning to paint as an expression from your soul may surprise you as you focus on your subject.


Since taking the classes I have concentrated on water colors. So far I’ve been able to paint personal greeting cards and gifts for family and friends. I bought the readymade blank cards and envelops at the art supply store. It is a hobby I look forward to as time slots open up in my schedule. It is easy to set up a dozen cards to work on once you know what design you intend to use for the holiday or occasion.


I know how well trying a new art class can work as a means of expressing oneself when speech is difficult or delayed while healing. The trigger for me to write about this subject is the recent American Cancer Society announcement of their Art Show to promote just this type of rehabilitation program for cancer patients. Some of the paintings in the show were amazing. They were done by both children and adults dealing with their own or a family member’s journey through cancer surgery, therapy, recovery or death. Art Therapy Programs at some Medical Centers have been running for several years. Most fill up quickly once they are advertised. Watch for the art shows displaying work by their own members in your local library; some also offer art classes.


In closing I repeat, I knew I could sketch the speaker or scene outside the window while listening to a lecture or sermon, but I didn't know I could paint portraits in oil, or watercolor greeting cards until I took a course to learn the basic rules of design, perspective and color before experimenting on my own.


As it turned out watercolor is my all time favorite. It is the least expensive medium, the easiest to work with while traveling, and the safest when painting with grand children for fun. The best part of it for me is the surprises water color always delivers while you’re working with the paint and paper. I hope this has given you some fairly inexpensive holiday gift ideas for your loved ones and yourself. Happy Holidays!


Elizabeth Finchem
 

 

 

 

HIP HIP AND THREE BUZZES....


from Rosalie Macrae



I feel like the ecstatic mother on our British Gas adverts, telling the salesman to forget about the stove. She has just been phoned by her undergraduate son to say he has passed with an 'ology'. It doesn't matter what the ‘ology’ is, she explains to the salesman. Technology, biology, campanology. He'll have letters after his name. Wait till she tells next door.

My own unbelievably totally brilliant son Daniel, who takes after his mother, naturellement, had his Masters degree presented at a very grand ceremony yesterday, along with a few hundred others. To me they were just smiling shadows. I cannot remember. My fingers are just about touching the keyboard and I bang, in case the words float away with me and go over the top. I, too, am a bit vague about what he had actually won his scroll for. Something to do with poetry and learning difficulties. If he knew I was writing about him he might even flee to his old revolutionary dropout place where he had considered life, for a further year or four.

The first person I told about it was Matt the window cleaner, camel leather money bag, Egyptian-- read on, this is relevant-- slung over his massive frame. As always on payday, he was spruced up in a huge Harris tweed jacket and corduroy trousers, looking a real toff. A bit like Jeeves on his day off, to remind customers that his working Manchester United sweatshirt is strictly for the mop and bucket. One of his twins, Poppy--or Matilda--four and three-quarters, was draped around his neck. Matt has just about been forgiven for taking his family on a Bargain Break to Egypt in July when the weather was 120F. Which is why it was a Bargain Break and the coolest place to be was beside a pharaoh in his sarcophagus. His wife and the children were flopped out in their cabins throughout the holiday as the ageing yacht hugged the shady bits on the Nile. They came home as pale as when they left and their mother tansprayed them all before they faced the neighbours.

Matt thrives in the heat and was up on deck with the captain. They had a good arrangement. Captain Noseer took him down snorkelling beneath the pyramids and sometimes they found amulets, usually made in China. In return, Matt mopped the stateroom portholes gently. A lot of cold beer to wash down the big chunky cucumber sandwiches, smothered in chilli. Not like the ones they serve on the lawns at Buckingham Palace. [Must get this in. Was a press guest there once after a Queen Mum tour.]

While I paid Matt he listened, rapt. He was sure that Matt Jr. was university material, but thought the boy would go pear-shaped at wearing a mortar-board. He grinned massively, pumped my hand as if we'd just met. Today my right hand bones are still tenderish. Then he said this was my lucky week. He had great news for me. New customer called Pauline. She looked like me, she was a skinny Lizzie too and best of all she was a larywhatsit as well, with a hole in her neck like mine. How about that then, petal, eh? He hadn't mentioned me to this new lady as he didn't know her well enough to chat yet, but she was taken aback when he had understood her Servox straight off. He remembered what a job he had with me first time but only becauase it was different. Now he had found me a new friend, innit? See what I'm saying?

Matt is a Cockney and finds my Servox easy to understand compared with what he calls the country accident. Oh dear. Decisions, decisions. I know Pauline well. She has just written to our local group saying she is having a break from lary functions and wants to get on with her life as it was twelve years ago. We all respect that. At the same time I didn't want to deflate Matt's pleasure. He said he had been dying to tell me about Pauline all week. I carefully wrote down the telephone number he read out---it is in every diary since 2005---and we shared a dish of Baileys truffles I had made previously, as the TV chefs say. His uniquely flexible slimming plan would suffer along with my acid reflux.

I send Pauline every good wish in transforming her life. It is not easy. One's isolation is sometimes sharply underlined. At the graduation ceremony everyone cheered when it was the turn of their friends to step up on the platform under the local television station cameras. Not many people knew my son, as he was a mature student and had worked alone in the university library until it shut at ten.

There were only isolated hurrahs from his girlfriend, jumping up with joy, the lecturers he knew and the library night porter Salomon. They always had a Bacardi together, finances permitting. Mother, who wanted to raise the marquee roof, could only buzz the button on the EL three times. Daniel swore he heard it though!

 

 

 

 


In our November issue, Israeli artist, Avraham Eilat (a laryngectomee since 2000), responded to an earlier article by Rosalie Macrae about the dilemma of tissues. Avraham had recently included a series of photographic studies of tissues in an art exhibition in Germany. They are, he noted, an integral part of daily life for us. We were pleased that he shared them with us and even more pleased when he asked if we would be interested in a monthly column on art and the artistic process. In the future he may or may not discuss lary related art. He wrote “since I believe that art is valuable only when it speaks about general human concerns rather than on private matters, I want to show other works as well. Not every work will be "beautiful", and some might be even painful.” I think that is good, actually. After all, we are not, or should not be anyway, completely defined by that singular aspect of our lives. Being a lary certainly informs our lives, but not everything needs to viewed through that prism. Since 2005, Avraham has been Director of Pyramida, a center for contemporary art in Haifa, Israel. Please welcome Avraham Eilat “Voice of an Artist”

 

 


 

A PORTRAIT OF THE ARTIST AS A YOUNG LARY

 

 

I have been a visual artist for almost 50 years. In addition to the typical artistic career (exhibitions, art events, grants and prizes) I taught and lectured in a number of art schools. In 1997, I started to develop hoarseness, and it became more and more difficult for me to produce voice. The doctors were not too worried and tried different solutions. One of them suggested I should take a course in speech therapy. Since I was neither a heavy smoker nor drinker, he assumed that my problem derived from using my voice incorrectly - a typical lecturers’ symptom. The strange sounds I produced during my therapy exercises didn't improve my condition, but they did inspire me to create a special sound for a piece of art.

In the winter of 1998 my doctors decided a biopsy was necessary. At the same time I had been invited to participate in an international art event in Melbourne, Australia, to erect a second version of one of my sculptures previously erected in Israel. I decided the biopsy could wait.

The sculpture, entitled "To the Artists of the 20th Century" was homage to two important artists and their influential works: "The Endless Column" by Romanian sculptor Constantin Brancusi, and French artist Marcel Duchamp's "Fountain". My piece was an 8 meter high column made of a stack of 20 toilets. It was a beautiful object transmitting two opposing messages simultaneously. The white waves of rhythmic flow towards the sky gave a feeling of spiritual elevation. On the other side, a close gaze revealed the fact that the basic unit of this piece was a toilet seat and immediately directed the viewer's emotions down to earth. As a result, at least for me, this sculpture was about matter versus spirit, body and soul.

 

Constantin Brancusi: Endless Column
Tirgu Jiu, Romania, 1937
Constantin Brancusi: Endless Column
(detail)
   
Marcel Duchamp - Fountain, 1917
 

Avraham Eilat:

To the Artists of the 20th Century
Melbourne 1998

Avraham Eilat:
To the Artists of the 20th Century
(detail)
   


I believe that art should express human experience in a vast, universal way. However, personal aspects sometimes have significant influence on the process of creation. Thus, recordings of my voice therapy exercises were transformed on the computer of the very talented unconventional Israeli musician Yossi Mar-Haim into a special sound track which was transmitted from the top of the sculpture. It added another dimension to the piece.

www.pixelpress.org/eilat

 

 

 

 


 

The Promise


Jack Henslee

 

 

As some of you may recall, I wrote an article for WebWhispers earlier this year titled Voices Restored - One Country at a Time. That article documented a trip I took to Costa Rica in March-April this year and my meeting with the “Association de Laringectomzados de Costa Rica” (ALARCORI). This fairly new group was struggling to reach the laryngectomees of Costa Rica and provide whatever limited assistance they could. I was deeply moved by the fact that out of the nine laryngectomees present only 4 could speak. I had brought 6 donated ALs with me along with some other supplies which I distributed along with a promise that I would find a way to provide more help in the future.

After my return home I proceeded to request, beg and use various others methods to collect more ALs and supplies to take back with me at a later time. I had already decided that I wouldn’t just give them more equipment because they didn’t really have the necessary training or support to teach the proper use, and I wanted them to have the best chance possible to benefit from the donations. Just because I, as well as other laryngectomees know how to use an AL, that doesn’t necessarily mean that we are the best people to train others. So I began my search for professional volunteers who would work just for expenses and had about two weeks to donate.

At the start Barbara Dabul, PhD, from the Phoenix area came to mind. She has long been involved with several California laryngectomee clubs as well as the California Association of Laryngectomees. Plus, as a great added bonus she is fluent in Spanish! In addition to Barbara, I also recruited the assistance of SLPs Susan Reeves and Lisa Proper, both of whom are well known in the lary community. Unfortunately they had to drop out of actually making the trip because of personal conflicts, but they both contributed valuable services with recommendations and other support. Neither of them was replaced due to financial constraints and a tight schedule which hampered the search for another volunteer.

The other support I received was fantastic. I received equipment, supplies, services, repairs, and some cash donations from the following: California Association of Laryngectomees, California Deaf and Disabled Telecommunications Program, Florida Laryngectomee Association, Griffin Laboratories, Lauder Enterprises, Luminaud Inc, Mountain Precision MFG, UltraVoice, the Look Who’s Talking and Inland Empire laryngectomee clubs of California, and numerous individuals who donated personal ALs. I am extremely grateful to all who donated, but without the vendors listed above doing the repairs for me none of this would have been possible. They always come through!!

So what did we accomplish??? It’s hard to even begin because of the limited space I have but here is a summary. Because of the short funding and good advice from my supporting SLPs, we reduced the clinic from two weeks to one week. The first three days consisted of lectures in the morning and speech clinic in the afternoon. The fourth day was mostly clinic and some “cultural” activities that involved some dancing and singing…. You should have been there! The last day was evaluation and graduation followed by a great lunch in the remote hills about one hour from San Jose… but it took us about two hours because everyone got lost!

After introductions, on the first day, I did a presentation titled “What is the IAL?” They requested the subject but I expanded it to explain not only the functions of the IAL, but to let them know that there are many other organizations out there such as, the Congress of European Laryngectomees, Asian Federation, Nordic Conference, French, Spanish, Portuguese, California, Florida, and Texas associations, and of course WebWhispers. Some were amazed that they were not alone and I feel it gave them a lot of hope for their future.

My second lecture of the day was rehabilitation in the USA, and why we came to Costa Rica. I told them, "Communication is the single thing that most makes us human, and voice is the preferred method of communication." I explained that they had not lost their voices; just their sound source and we had brought them a new source of sound. We are all family and if we don’t help each other then no one else will, but it was up to them to continue after we were gone.

I told them there is NO FREE LUNCH! Your New Voice is Not Free!
As I promised to return, you must now return my promise with your promise that you will:
  • Work hard to make your new voice the best it can be
  • Use your new voice to improve your life
  • Use your new voice to:
    • Help others who have lost their voice
    • Make your community aware of larynx cancer
    • Help students and others quit tobacco
    • Make not only your life better…but someone else's better also!
    • Support your local laryngectomee club

 

The rest of the week continued with lectures from four different doctors from Costa Rica, presentations from the local club, presentations by Dr. Dabul, and speech clinic each afternoon. We were very fortunate because six SLP students from a local university had heard about the conference and were in attendance. They were a great help to us not only with their skills and desire to learn, but also because they all spoke English very well. That was a big help to me since I know little Spanish and my voice gave out on me the second day.

 

 

We had fourteen laryngectomee participants in attendance each day, each with different stories and different problems… just like us. There was the local cop, still a young man, and now with no voice. He left as an excellent Cooper-Rand speaker with determination to return to work and support his five children. There was the man who traveled six hours roundtrip by bus everyday from his home because he couldn’t afford to stay in a hotel. He ended up not only being a great speaker, but was determined to start his own club in Limon, plus also learn esophageal speech. Then there was my “poster child” who missed the first day because he was sick from radiation treatments, and only stayed long enough the second day to receive about thirty minutes of instruction with his TruTone. I commented that we wouldn’t see him again, but he was back the next day and speaking quite well. His wife, with tears in her eyes, explained how he had stayed up half the night practicing even though he wasn’t well.

I could go on and on about the other twelve and the effort they all devoted. In the end they totally exceeded our expectations and all of them passed their “final exam”, which was based on the timeless Shirley Salmon “Artificial Larynx Speech Evaluation Form.” Then, as an unforgettable finale, we had a TV news crew come in to do interviews and in moment after moment these graduates and new pioneers of hope for Costa Rica proudly spoke on TV without hesitation.

As I look back, the week began with my passing out a poem I wrote many years ago titled “Sounds of Silence” that had been translated into Spanish. These were silent people without a lot of hope and their demeanor reflected that to some degree. But as we progressed they bonded and helped each other, they began to laugh and smile, they joked and played, and toward the end when a local dance instructor was brought in for some fun activities…. they danced to the sounds of silence!

Note: Costa Rica is still a work in progress although the ground work has been laid. They now have twenty-six artificial larynges that have been donated but that is less than half that is needed now; more will be needed in the future. I do believe that they have the ability and determination to change their health system so that this won’t be a problem a few years from now, but today it still is.

In addition to Costa Rica I have also began a support mission to Peru and have shipped them six ALs for a start. After evaluating how that works out I may be sending them many more in the future, as long as I keep receiving donations.

If you would like to help in any way please contact me at: jhenslee@comcast.net. There will always be a need for more ALs as well as funding so we can continue the training as needed. Or, if you would like to donate your time and skills for future projects that would also be welcome.

 

 

 

Welcome To Our New Members:

 

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 22 new members who joined us during November 2008:

 

Gailen Allen

Ashton, NE

Joey Allen - (Caregiver)

Ashton, NE

Al Beusang - (Caregiver)
Cape Porpoise, ME

     

Sharon K. Bonham
S. Charleston, WV

Douglas David Clifford
West Palm Beach, FL

Alvin Cronk Sr. - (Caregiver)
Granada Hills, CA

     

Mark T. Finn
Virginia Beach, VA

David Gill
Cottesloe, W. Australia

Marilee A. Gray
Long Beach, CA

     

Abby Hankins - (SLP)
Sherman Oaks, CA

John H. (Jack) Hunt
Alberta, Canada

Oliver Kelley
Jonesboro, GA

     

Kimberly Kirkham - (SLP)
Murray, UT

Janet Long - (Medical)
Brownsboro, Alabama

Colleen Maher - (Caregiver)
Lake Forest, CA

     

David Osborne
Blue Springs, MO

Sharon Pluim - (Caregiver)
Waupun, WI

Tina Post - (Vendor)
Carpenteria, CA

     

Mick Randle
Nottingham, UK

Hans J. Sauerland
Edmonds, WA

William G. Shore
Suffolk, UK

     

Dave White
Port Orange, FL

 

 

 

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.
 
  © 2008 WebWhispers
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