July 2009

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Michael Csapo Lary Of The Year News & Events
Voice Points Linda Stachowiak, SLP Lary Travel Tips Education-Med
WebWhispers Columnist Mike Burton From Me To You-Part 7 Experience
Vicki's Midnight Train Vicki Eorio Harried And Hurried Experience
Practically Speaking Elizabeth Finchem Unplug And Recharge Education
Voice Of An Artist Avraham Eilat What Is Suddenly Too Late Art
Travel With Larys Terry Duga Open Your Golden Gates Experiences
New Members Listing Welcome News & Events

 

 

 

 

MICHAEL CSAPO

Webwhispers Laryngectomee of the Year, 2009

 

When we lost Dutch in 2006, it was a tremendous loss and it would have been even more difficult for us to deal with had Michael Csapo not joined us as a moderator six months before Dutch died.

Michael survived a hectic training for moderating by Dutch and had to learn how to deal with the list members. He was a fast learner and moved on quickly to start entering new members and changing email addresses for members as he received even more training to become List Manager, while others were joining us in training for moderators.

It was an unbelievable time and Michael had a tough road as he was being groomed to "help" and "fill in for" Dutch during his illness. As we now know and suspected then, this was to be permanent. Michael worked his heart out and came out of it, absolutely capable and ready, to take over the position of List Manager and, later that year, VP Internet Activities, which put him in charge of approval of all incoming members for their enrollment into the lists, all changes and problems relating to the membership, and of the operation of the list, including the moderating staff.

Michael has been willing to serve whenever he was asked, has helped in a number of departments, and has served on several committees, including Awards and the Election Committees. He has been a blessing for us to be able to carry on the list as it has grown and doubled in the past few years. He is continuing a major portion of Dutch's work and fills a critical position for WebWhispers.

The above nomination for the Casey-Cooper Award Winner for 2009 for Michael Csapo tells why he was selected unanimously by the Awards Committee. He has earned this award.

 

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)                      [© 2009 Lisa Proper]

 


 

Laryngectomee Traveling Tips

By Linda Stachowiak MS/CCCSLP BRS-S

 

Most laryngectomees over the years have told me that traveling as a laryngectomee is not much different than before they had their surgery! The first tip sheet I developed for laryngectomees who travel entitled “Laryngectomees on the Road” focused on the traveling laryngectomee that encountered problems with their TEP (tracheo-esophageal voice prosthesis) when away from home. This brief article is going to focus on all laryngectomees, regardless of the means of alaryngeal speech used to communicate.

The question I would ask myself as a laryngectomee prior to departing on a trip is “What is different with me now than when I had my voice box (larynx)?” I think the answer to this question will assist in any “pre-planning” that you may require. For example, if since your surgery you need to be fed through a tube in your stomach or you need to be on oxygen, you will need to be sure that any special equipment or supplies can travel with you or be available at your destination. For example if traveling by air, check with your carrier to learn their specific rules and regulations for carrying special medical supplies (like oxygen). For most laryngectomees without “special needs” the main changes that have occurred since surgery are the way they communicate (electrolarynx, esophageal voice, TEP (tracheo-esophageal voice prosthesis) or paper/pencil) and how they breathe (stoma/hole in neck). Some methods of communication require special accessories or supplies and others don’t.

 

Communication Options


Means of alaryngeal communication

Accessories/supplies

Electrolarynx

Batteries specific for your device
Charger if rechargeable batteries are used

TEP (tracheo-esophageal voice prosthesis)

See Traveling Hints for TEP users: “Laryngectomees on the Road” article

Esophageal Speech

None

Paper/Pencil

Paper/Pencil

 

Be sure that additional supplies will be available so that you won’t have any interruption in your ability to communicate and get your needs met!

 

Stoma Care
Basic Supply Check List

Small portable mirror

Small portable light

Tissues/gauze

Saline bullets (to lavage and mobilize secretions)

Tweezers (long-handles are best)

Stoma covers

Stoma filters (HME’s – Heat Moisture Exchangers)

Stoma buttons/tubes (if worn regularly)

 

Weather conditions can often affect the amount/type of secretions that a laryngectomee may encounter. Most laryngectomees encounter these changes even when they don’t travel, just by experiencing different weather conditions in their hometowns. Even climates that don’t have a significant change in seasons experience some changes in weather conditions. We often see a change in Florida when our hot/humid weather becomes colder and drier and we are in need of turning our heat on in our houses. When we travel, the means by which we get to our destination (plane, train, bicycle, car, boat, camel etc..,) as well as the weather conditions at our final destination can contribute to these alterations.

Most laryngectomees at some point have experienced their stomal secretions becoming drier and crustier because of a lack of humidification. The key to reversing these symptoms is to add moisture to the air breathed through the stoma or to the stoma itself. Using an HME (Heat Moisture Exchanger) like those available from InHealth Technologies and Atos Medical can filter and warm the air keeping secretions thinned and reduced in volume. Lavaging the stoma is another way of adding moisture and expectorating secretions.

 

Heat Moisture Exchangers

 

 

Saline Recipe

Tap water

Table salt

1 quart container

5 or 10cc syringe

 

        • Boil 1 quart of tap water for 5 minutes
        • Add 1 tablespoon of table salt as the water cools
        • Upon cooling, place the solution in a clean container and keep for up to one week

           

Use the syringe and draw back on it to fill. Put the syringe up to your stoma... count 1 - 2 - 3... as you breathe in, shoot the saline into the stoma. This should make you cough violently, so have some tissues ready. Cough and clear the mucus. This should be done several times per day to keep the secretions thinned and avoid a mucus plug from forming.

 

Lavaging the stoma (pronounced la vaj ing) is a French word which means “to cleanse”. Laryngectomees are encouraged to squirt 5-10 cc of saline solution into their stoma to stimulate a cough and bring up secretions/mucous from their lungs. We encourage patients to do this 3-5 times daily. Homemade saline solution can be made with the above noted recipe or pink saline “bullets” can be purchased at your pharmacy or through InHealth Technologies or Atos Medical.

Former patients have also shared some of their “tricks of the trade” on keeping stoma secretions moist. This includes “misting” a stoma cover with water prior to wearing it to moisten the air breathed through the stoma; running the shower on hot with the door closed, giving you the “sauna effect”; drinking more water or filling the bathtub up with steaming water, letting it sit in the tub adding humidity to the air while attending to other bathroom needs!

 


 

 


 

Nowhere Man - (I’m a real nowhere man, sitting in a nowhere land)

by Mike Burton,
Middle England, UK

With thanks to the Beatles for the main title, the paragraph titles and lyrics. The names have been changed to protect the innocent and in some cases save their jobs. This story is dedicated to my wife and children for the support they gave me before, during and after my ordeal.

In my life
(There are places I’ll remember all my life…… thought some have changed)

 

I duly arrived back at the first hospital on that Friday afternoon and, by pointing, directed the ambulance crew to my ward. The nurses who still knew or recognised me could not believe what three weeks of what hyperbaric treatment could achieve. There were many comments like, “Is this really the same person? Doesn’t he look well?”

In hindsight, my improvement was due to a correct diet, hyperbaric treatment and probably a bit of good old fashioned tender loving care. Thinking about Jenny, Julie and Mary and looking at the other nurses on this ward, I was getting the symptoms of arousal which I was pleased about... at least it still worked!

By the time I left the other hospital, I had been doing almost everything for myself. The dressing on the wound was minimal; nurses did the dressing although I fed myself via my peg on the hi-energy food plus collagen at around 190 on the pump. After all, the quicker it went in the more time you had to yourself. They could not believe this. Most people, I was told by the dietician later, would be throwing it back up at that rate of input, but I wasn’t. I unpacked my stuff and proceeded down to reception with a written list of everything else I needed for the time being, syringes, drugs etc. The drugs were obviously still being prescribed as normal but they were being brought and left with me in plastic cups. All I did was use the syringe to load it with the liquid that I was given and pop them in via my peg. Sometimes I would do a ‘cocktail’ with all in one cup, depending on who was on duty at the time.

I was that au fait with what I had to do, on one occasion I corrected a bank nurse because she had missed out one of my medications. After checking my drug sheet she left and returned with the missing element.

The weekends passed without a hitch. I continued to get as much exercise I could manage. The weekend papers were no longer a problem. The shop was stocked on Saturday; Raymond and his wife came up with them on Sunday. On Monday things began as normal. Susie would visit when she could. When the Gerbil and the rest of the entourage appeared for the morning ward rounds, people almost appeared to be congratulating themselves on their achievements with my recovery. Statements like “Doesn’t he look well and what an improvement” made me really want to let them have it big time. I had pre-written sheets on my pad, which they all ignored, just a quick look at the wound and then off. I just cringed and got more and more frustrated day by day as they rushed to the patient in the next bed who was now more important than me.

The only thing I still had to do was to pass the barium swallow test and the powers that be had control over when they wanted that to happen. As each day passed I became more bored. Then one day I was walking down the corridor to get some exercise and met the hospital physiotherapist. I enquired whether it would be possible to do any light work outs in the hospital gym. She didn’t see that as a problem and said that she would let me know when she could fit me in. When it did finally happen she said that I was one of the few patients that walked with her, the remainder mostly being brought by some medium of transport. Over the period of my stay, I went to the gym only twice but it relieved a bit of the boredom. On both occasions I did the same thing. They had a set of freestanding stairs in an L shape where I could walk up and down, with only four steps on either side of a platform in the middle. I then asked if I could try some weights. I was given a selection but was advised by her to start with the lightest, probably less than one pound each. I found it relatively easy to pull the weight from my hip up towards my shoulder with my right arm but the extent of my surgery prevented me from doing the same with my left. This really frustrated me. Prior to the operation I could have thrown them a mile figuratively speaking, only now did I realise that my youngest son was probably stronger than me.

One morning, the “posse” came as usual doing their rounds, and after quick glance at the neck wound announced that it was time for the barium swallow to be organised. I could not believe my ears. The end of the hospital tunnel could be in sight? Eating real food and not using the peg? The thought of actually being able to take anything via my mouth again excited me initially, but as so much had gone wrong in the past I harboured this nagging doubt that I might fail it and be all back to square one.

I passed. The only question was when I was going to get out and endless thoughts were now going through my head. Looking forward to a real bed with a real mattress, not one covered in plastic. Not being woken at silly o’clock for drugs and seeing Susie, Thomas and Stuart again full time. Having real food, all I had at the hospital was a few meals and they were all crap anyway! The pump and peg was better, I could not taste that.

After a couple of months at home, I returned to the hospital and had my peg and only two remaining teeth removed. Being finally discharged, I was then handed over to the capable hands of our local nurses to come in and dress my ever diminishing wound which needed to be completely healed before the radiotherapy treatment could commence. This, in a way, proved convenient as it allowed me Christmas at home, which was always my dream.

Although I still loved her and always will, Susie had now, in my opinion, begun to despise me for the stress and problems I had caused brought upon her and our family through my cigarettes. These were stressful times for us both and we would argue in private. I was busy looking for jobs trying to become the breadwinner again while Susie spent a great deal of time talking to her younger sister on MSN which was free, therefore ignoring me. It was just my fault not hers. I could not blame her, she was right. I was the root cause of our now diminishing relationship. The kids acted as normal, a pain in the backside, but their hormones had not yet kicked in. That frightful time was still to come. I was just left to lie in bed in the morning, since Susie had moved into another bedroom. In hindsight, that was not what I wanted, but I suppose it gave us some space at least.

I had been ordered to have 30 sessions of radiotherapy; Susie did not want to take me. I explained this to the UK McMillan (the UK cancer support group) representative. She said that transport could and would be provided. Monday to Friday a car or ambulance would arrive and take me to the oncology unit. These car owners/drivers did it for nothing really, only claiming expenses at so much per mile, heroes in my opinion. Compared to the rest of the hospital, the oncology unit was modern and nicely furnished. McMillan provided tea & coffee facilities together with a choice of biscuits and cakes at a modest cost. I would have a coffee and cake after my treatment whilst waiting for my transport home.

In fairness, as far as I was concerned the system worked well. I would arrive with the others and we would get priority treatment so the cars or ambulances that brought us could take us back and then do another run. I would get called by one of the nurses, strip my top off and lay on the table. The specially made mask for me to keep my head in place would be fitted and I would be aligned using (what they called) the tattoo, which was a spot they put on your chest created at the time of the mask construction. They used it to align me with a laser which formed a cross, allowing them to get me to remain in a position so that the treatment would hit the right place. This spot will be with me until my dying day. The treatment did not last long and at the start was fine; it was only towards the end the side effects came into force, although to be honest they were not that bad really compared to what I had already been through. Arriving one day for one of my sessions I briefly met up with the Reverend who was on the ENT ward at the same time as I. We usually nodded to one another, shook hands and generally exchanged pleasantries, he would talk, I would write. He was discharged from the ENT ward weeks before me but his wife had offered to bring in the weekend newspapers if I wanted during my stay. I always refused as Raymond and Jenny would bring them anyway, but it was a nice thought.

I went back sometime later for one of my routine checks which proved clear, thank God. I also decided to go back to the ENT ward just to have a chat with any of the remaining nurses I knew. Some of them I recognized were there and as my voice was improving with time, they could understand me. Whilst we were talking I was surprised to see that the Reverend was back in there again. His surgery had been performed before mine as I have said earlier, but it did not at the time seem as radical since he could speak normally when he left and they said goodbye and wished me well, with no button to press. Somehow It had all had gone wrong for him and he now had a voice worse than mine. He did not say a great deal after shaking hands and it was he who was now difficult to understand. However, I did finally make out that, like me, he now needed to be relocated to another hospital for further treatment. I did not get a chance to find out where or why as a doctor and nurse approached and asked him to return to his bed with them. Upon asking what the problem was with him, the other ward nurses said that they did not know. Maybe they were not prepared or allowed to tell me as, after all, it was none of my business.

I had become a changed person after all I had been through. I hope all the people I met are still with us.

Next Month –The Conclusion - Help (I need somebody, not just anybody, can you please, please help me)

 

 

 

 

 

Harried and Hurried

 

Boy! My head is a mess! I am so restless. No, I am bored. No, I am overwhelmed. I have so much to do. But I can't get it done. I have nothing important to do so I do nothing. No, that is not true. I must finish my course in Medical Coding if I hope to get a job. The IRS and I are having a conversation which is resulting in massive amounts of documentation. There are so many things I want to do and see....but probably never will. And there are so many things I must do and am not having good luck completing.

 

For instance I just discovered that the Louvre Museum has 50 acres of gallery space. I was astonished! Not just the Mona Lisa is there but so many other treasures some experts say it would take a lifetime to see all of the masterpieces assembled there from the centuries. But the reality is we will never see it except through their website with a virtual tour. Nor will we see Italy or Ireland. Heck, I have trouble seeing my beloved granddaughters in Minnesota! But somehow hope springs eternal and if I just work hard enough and save enough, and keep on that treadmill, I will get one of those trips.

So I am in a hurry: a hurry to finish the course, a hurry to keep the house cleaned, a hurry to organize a room full of files from as far back as 2002, a hurry to get more veggies planted, a hurry for them to mature, a hurry to clear up and respond to all my emails, a hurry to give away tons of business clothes I will never need again, a hurry to read all the books my neighbor shares with me, a hurry to try to make “no-knead” bread, a hurry to lose weight, a hurry to trim the rose bushes, a hurry to exercise regularly, a hurry to write a book, a hurry to visit dear friends from Wisconsin to Texas, a hurry to extend my volunteering, a hurry to, to, to DO, to FINISH doing anything.

There are the old, cheap side tables I am going to refinish. The several crewel stitchery kits to finish. The Nativity Scene figures to be found, purchased and painted. The framing of grand children's pictures. The pictures I want to take. The blog I want to start. The broken bridges mended....maybe. The prayers I must say more frequently and fervently.

Given all of the realistic/unrealistic goals I have set for myself, I must continue to hurry. So, every night, I vow to get up early and attack the day armed with my trusty list. And every morning, I lay in bed listening to the news and sleeping another hour. So when I do get up, I am already behind. And all of the activity escalates.

But what is so confusing is that there are parts of my life that I want to have proceed in slow action, to freeze frame at times. Annie, my beloved dog must not get any older. She must stay this age and temperament and remain close to me always. Frank must remain in good health and maintain his terrific sense of humor. He must take care of me physically and emotionally. He must continue to have terrific political and philosophical conversations with me. My friends must not just get better but thrive. My grand children must not change until I can see them again. The bird sounds must continue to be riotous in their volume and frequency. The trees must not age anymore for fear they will fall in a storm. The cats must stay young enough to race through the house like they are running an Indy 500. The memories of loved ones lost must remain fresh and filled with love. The painful life lessons learned must not be forgotten.

Whew! I am exhausted! Now where is my list and where are my dreams?

They must be around here someplace.

Vicki Eorio
 

 

 

 

 

Unplug and Recharge

 

I began writing this monthly column at the request of Dutch Helms. He was a good friend and I felt committed to this effort for that reason. I also intended to use the monthly articles as chapters for a book I was trying to finish. Due to several computer crashes I had lost some of my early work, and I thought a project with deadlines would force me to get a little done each month. The book still needs to be edited and published.

The title, “Practically Speaking” was chosen to state right up front that I am not a speech/language pathologist. My topics are chosen to share not only my practical experience but also to reflect what I have learned at numerous seminars about helping new laryngectomees. Since everyone’s experience is different, I needed training to effectively help them learn to use an electro larynx, develop esophageal speech skills, or address their various rehabilitation needs.

It is easy to understand why new laryngectomees might assume that I am just sharing my own experiences and opinions. However, I have had, as my mentors, world leaders in laryngectomee rehabilitation. Their lectures, coaching and training were the best any SLP could hope for. I hope I’ve made them proud of my decades of service. I know I’m very proud to have worked with them on both sides of this adventure, as a beginner and instructor.

Last month I referred to the commencement speech given by Eric Schmidt, CEO of Google, to the graduating class of the University of Pennsylvania in Philadelphia. His closing statement stuck with me. Especially the wisdom of his advice to “turn off the computer and electronics”…and see what the world needs. He also could mean those people all around us who we engage with everyday at some level. Following this speech were news reports on the results of a survey conducted in several countries and the findings were not a surprise (to me, anyway!). The happiest people live in cultures that do not have electronics available to them. Their focus is on family and relationships in very basic ways. They spend time together, up close and personal. It made me wonder if those who are constantly on their cell phones or texting are any closer to each other, especially when some of the calls are for nothing more than a message saying, “I’ll be home in five minutes”. I can wait.

The current economic crisis seems to be triggering some soul searching about what went wrong at home and in our personal lives. Not long ago I saw that someone actually felt the need to write a book telling parents about some simple rules many of us grew up with. Nobody had to tell us that the family eats dinner together every night at a certain time. I didn’t realize how far astray our culture had gone with the advent of having a TV and computer in several rooms of the house, or perhaps for every member, even pre-school age children. TV or carry out dinners eaten at home or in the car can be fun occasionally, but this has become an unfortunate routine for too many families today.

This article will be short. I have determined that I need to take my own advice and unplug and recharge. During my week at the IAL Annual Meeting and Voice Institute I will have little opportunity to watch TV or work on my computer. I’ll take the laptop for an occasional email check for important messages. I’m not ready to go cold turkey! I will do some summer reading when I have a few minutes to relax and rest my mind.

I do wonder what it would be like to take a whole year off from television and internet. There are moments that it seems like a Heavenly idea. I would certainly save a bundle. It might even help me tackle the stack of good intentions that I promised “to get to later”. Procrastinators know that “later” does come at the most inopportune moments. For me avoiding the “later” promise requires a certain amount of self discipline which I seem to ignore when it comes to my computer friends, the Tuesday and Friday WW Chat group, and people who email asking for help with esophageal speech. Let’s face it…that’s more fun sometimes. The good news is, “later” has finally arrived. This summer I plan to make some very necessary cost and time saving changes with my server, DSL/WiFi, and a new laptop. The main goal is to finish compiling all the hints, myths, and instruction for the book entitled, “Practically Speaking”, There are a couple of other frequently requested projects waiting patiently in the wings, including the DVD and webcam capability for face to face esophageal speech instruction. I look forward to both becoming a reality.

I should mention that I also need to carve out time to move from this house, and arrange time to visit my children and grand children sometime before the end of the year. Wish me luck with all the changes I’ve set out for myself. People first. Especially new laryngectomees, and of course my large family.

Elizabeth Finchem
 

 

 

 


 

The Fear of What is Suddenly Too Late


I began working on this body of work in 2000 while in Paris. I used to go to the Louvre, spending hours in the Egyptian wing, examining and learning from the magnificent artistic achievements of unknown and gifted craftsmen who, for thousands of years, created amazing sculptures, paintings, jewelry and other objects of interest. Today, we think of their work as a very high art, but did those craftsmen consider themselves artists? When you examine carved hieroglyphs, you discover that many of them were done by simple copyists, trained to carve signs and symbols, perhaps not even knowing the meaning of what they wrote. Everything is correct and in the right order, but their work is dry and technical, similar to what we see on gravestones in our cemeteries. However, you also discover many others, obviously created by people with a natural artistic sensitivity to form and line, to rhythm and composition, to the effect of light on carved spaces. This kind of awareness and appreciation cannot be taught.


But for me, the most inspiring moment in the Louvre was when I first entered the replica of a mastaba reconstructed in its Egyptian wing. A mastaba is an ancient tomb of a noble man or high official in the old kingdom. The walls are fully decorated from bottom to top with paintings describing everyday life – balls and hunting, farming and fishing, worshiping and fighting and every other aspect of the deceased person's life. It suddenly occurred to me that this visual way of recording life (also practiced by other ancient cultures such as Assyrian and Babylonian) which is a part of my heritage, was very effective and colorful. I decided to try adopting it to my quest to express my thoughts and feelings about modern life in general, and the Middle East reality, in particular. I was born in this part of the world and now I live a complicated and dangerous life here where all the same elements mentioned above still exist.

 
Avraham Eilat, The Days, 2004 Avraham Eilat,The Fear of What is Suddenly Too Late, 2003 Avraham Eilat Mastaba model, 2002
     
Avraham Eilat, Slave Boat, 2004
 
Avraham Eilat, Parade, detail, 2005 Avraham Eilat, The Fear, detail, 2004 Egyptian wall painting, Medinet habu, 15th century b.c.
     
Eadweard Mybridge, from The Human Figure in Motion, 1880s The Arena guardians, Assurbanipal palace, Ninve, 668-626 b.c.
   

 

 


 

Open Your Golden Gates


Tuesday, June 23, 2009

 

I am ready. I have packed, and repacked to make sure that I have sufficient room to take what I must for the IAL convention in the San Francisco area and for the WW table and to have space to get goodies and take them home. My ride arrives on schedule -- 8:30 a.m. The day is warm and sunny. I am on my way. I get to the Indianapolis Airport. This is my second time at the new terminal. No problem checking my bag at the Southwest Airline counter. I have time for breakfast.

Café Patachou has a spot in the concourse of the terminal. It is a small, local, group of restaurants in Indianapolis. Locals know it, or should. The Café offers locally grown, organic foods. It specializes in breakfasts, though has sandwiches and salads. The three egg omelets are yummy to say the least. I have a bacon and Swiss omelet with their signature cinnamon toast -- thick slabs of sour dough bread toasted, buttered and sprinkled with cinnamon and sugar, just like mom used to make. Comfort food, to say the least. It comes with a cup of mixed fresh fruit, blueberries, apple, orange, pineapple and grapes. I touch bases with Pat by cell phone while I wait for my order.

Stoked with a good breakfast (a necessity when starting a long day of travel) I head for the gate. No problems with the security inspection. I had forgotten to take my Servox out of the bag, but it did not raise any concerns. When I get to the gate, I find Mary Jane Renner waiting to get on the plane. The day has begun well. We get front row seats and take off. We have two stops along the way -- Phoenix and Las Vegas. But, we do not have to change planes. In Vegas, Pat joins us for the last leg of the flight. She had gotten a hurried bite to eat as she changes planes so she is the last to board.

We arrive in San Francisco about 25 minutes early. Of course, that early arrival is lost to slow baggage delivery. Such is karma. Pat and I head to the hotel courtesy shuttle. Unfortunately, we have just missed the shuttle. It only runs once an hour, so we have a wait. But, the weather is great. Sunny but not too warm and there is a breeze. The van finally comes. The driver is a very nice man who comes from Hawaii. The trip is about 20 minutes.

Entering the Hotel lobby we see John Ready. Ed Chapman with Barb and Yvette enter, Joanne Fenn is there. The fun is about to begin. I check in and find my room. A quick hanging of my banquet coat and slacks and a change of seals (it has been a long flight), I am ready and I head to the bar/grille. We are at a large round table. Ed, Barbara and Yvette, Michael and Lisa, The Vander Hogens, then Mary Jane, Pat, Joanne. We keep adding chairs.

Anthony Martin, our hotel contact for the banquet comes by at my request. With Libby out of the action, Pat and I have taken over the lead on the banquet. We go over the plans briefly with him to make sure everything is going smoothly. Very helpful guy.

A few drinks and a light dinner. After dinner, we head to the hospitality room and see those that are there. Bob and Leslie Herbst, Tina, Sapp, David, Ed, many others and even Noor Ali from Pakistan are sipping and noshing. Jim Lauder shows. He is in his signature Fabulous Furry Freak Brothers t-shirt. He has a Winchester (Don’t mess with Texas). Finally, around 9, I crash (give me a break, it is midnight my time). Tomorrow, Pat and I are meeting her cousin for a tour of San Francisco.

 

Wednesday, June 24, 2009.


I get up after a needed good night’s sleep. I start the day by writing (hey, I cannot disappoint the Golden Goddess who expects this missive for Whispers on the Web). But, I am ready for the day. Pat and I are meeting her cousin Leslie and her husband John. They are going to show us around the San Francisco area. While we wait in the lobby, we see Jim Lauder. He has just added Web Whispers to the latest edition of the Blue Book. He even gives me a copy. Wow, what a guy! We run into Dr. Singer and have a pleasant chat with him. I remember him from Boston, another giant in the field, and a truly gracious man.
Leslie and John arrive. We start our driving tour. We first go to the Palisades and drive down the ocean. The Pacific coast is like the Atlantic Coast, but on steroids.. While the beach and beach view property has a familiar ring to it, there is also a uniqueness that is hard to describe. We make many stops in our journey and take time to walk around and take pictures of the ocean and of fantastic architecture. We work our way to the Golden Gate Bridge and stop on the Frisco side. Then we drive over to Marin County. On the other side, we make a brief stop at what was once (or may still be for a time) a military base. A sight seeing group driving in an old fire truck has also stopped and the riders are having their pictures taken while wearing fireman gear.

We drive down to Sausalito It is a beautiful little seaside artist colony and all around beautiful city. It is getting late, so we stop for lunch at Scoma’s, a restaurant on the bay. Catches Pat's eye because the sign has the c looking like a curved t for stoma! The food is exceptional. Sourdough bread starts us off. Then a cup of very nice New England Clam Chowder. The pan seared sea bass with avocado salsa (why it is called salsa I don’t know but it is tasty) and scalloped potatoes and asparagus. What a meal. Followed by Tiramisu that is to die for, I am stuffed to the gills. Jim Lauder, Rick, and the German contingency come in for lunch just before we leave. I learn later that Jim considers Scoma’s one of the best restaurants in the entire area. I will always rely on Bwana Jim’s word for that.

We work our way back to San Francisco. The fog hangs over the hills and the temperature drops twenty degrees. I am glad that I brought my WebWhispers jacket.

We stop at a couple museums just to see and walk the grounds. We drive up the highest hill in the area to catch the view, and what a view it is. The city is magnificent. We drive up steep streets where you cannot see the ground before you when you reach the top. I learned to drive a stick as a teenager in Pittsburgh, PA, but the Big Burg has nothing on Frisco. Frisco takes the cake and that is saying a lot. (Hey western Pennsylvania, have you considered hosting an IAL meeting? Pittsburgh is one great and lovely city, just a thought). We drive down the curviest street in the world. I take a movie as we descend.
We tour through the Castro, Haight Ashbury, the Presidio, by the original mission, by city hall, through little Saigon, through China town.. All the areas are different and all are charming.

Leslie and John take us to their home, which they have recently remodeled. To say that I am jealous is an understatement. The three cats run from us. Later, however, Penguin, the big long hair allows Pat, and then me to pet her. Her shyness has given way to smart cat affection wanting. Or, she just recognizes two people who know how to pet a cat.

Finally, after a long day, we return to the hotel. I stop into the bar to see who is there. Jim Lauder and the German contingency are having drinks and ordering dinner. I first plan to drop stuff in my room and join them, but when I get to the room I realize that I am tired and I have to get up early and help Pat set up the WW table, and if I join Jim, well, discretion sometimes is the better part of valor. Tomorrow, the Annual Meeting begins.

 

Thursday, June 25, 2009 (this must be THE DAY)


I am glad that I did not stay up to all hours on Wednesday. I start with a quick trip to the Internet to check my e-mail, the news in Indy and to read the comics (an integral part of starting a day). About 8, I go to the vendor’s room where the WW table will be set. Pat arrives, as do Michael and Lisa and Ed Chapman. After a few tries, we figure how to attach the WebWhispers banner to the front of the table. We set out brochures, information on the new 2010 cruse to Quebec, the seating chart for the banquet and special dollar store wind up clowns on tricycles and midway games. The table takes a festive aura. Michael will later add a stuffed Eric Cartman to the décor!

The IAL Annual Meeting begins with a keynote address by Mark Singer, the Singer in Blom-Singer. Dr. Singer, a most gracious man, tells of his early days as a surgeon, his move to Indianapolis, and collaboration with Eric Blom to develop the speech prosthesis and procedure that bears their name. His talk contains much information and humble humor. A good start to the day.

After the talk is a break, the first time those in attendance explore the vendor’s room. Activity begins at the WW table. We soon discover that there may have been a problem in the on-line reservation system for our WW Dinner. We had some people say that they had made reservations on line but we had not received them. But, we have a few more. Now one or two problems can be the result of user error, but more suggests that something may have gone amiss. When they send in, it goes to two of us so there is no chance we miss one... but neither had gotten these. We'll check further on that. In reflection, I will change how I deal with credit card transactions. The good news is that we were able to accommodate those with problems and we know that even if they sent in a credit card transaction via a WW link, their card will not be automatically charged, I do that by hand.

At lunchtime, Ed, Barb, Yvette, Michael, Lisa and I decide to try outside of the hotel. We walk to a little sandwich shop in an office complex right next to the hotel. The sandwiches are very good, quite large, and very reasonably priced. Brought back one for Pat and Donna McGary to share. That afternoon, Donna and I walk to Trader Joe’s and the stores around it. Trader Joe’s is a great chain of grocery stores. We have them in Indy. They have good food at superb prices and some special stuff. I try to find some of their Organic Ginger Snaps, but, alas, they don’t have them that day. The exercise, however, has been good.

Back to the hotel. We go to the banquet room for final preparations. We move a table to the floor to hold the awards. The podium goes on the stage so people can see Pat and the other speakers. We move a row of tables from the front to the back to give us more room. Barb and Yvette had folded the new WW Dinner programs. They look great. Carla brings the table decorations that Libby had sent her. Upon opening, some pieces are broken. Carla to the rescue, She grabs a ride and gets some replacement parts, and she and Lisa make some nice decorations.

Time to retire to the room, get a shower and change. A little after 6 I go back to the dining room to make sure we are ready. The Bruce Medical beverage reception begins at 6:30. People are still trying to get seats to the dinner. It's wild but we find places for them all.

At 7:30 the doors to the room open and the crowd enters. A hit of the gong gets their attention and Pat directs them to their chairs. We open with a toast to our founder Dutch Helms. Then the eating begins. The meal is excellent. There is a mixed green salad with a very nice balsamic vinaigrette dressing, roasted vegetables, cheese tortellini, beef stir fry and salmon. The deserts are rich brownies and a delicious chocolate mousse.

For the program, we start with a series of talks about the early days of Web Whispers, all members from 1996/7. Wayne Baker, John Ready, Carla Gress, Pat Sanders and I give our memories of the early years. Then, Jack Henslee reads a poem by the late Frank Morgan. This year, we have listed the memorials on the new program instead of reading them. We have a moment of silence to remember those who have passed beyond, while Bob Herbst slowly rings a gong. The sound of the gong carries throughout the room and lends solemnity and beauty to the moment.

Then it is award time. Michael Csapo is this years very deserving recipient of the Casey Cooper Laryngectomee of the Year award. He accepts with the grace and humor that have helped to earn him the award. Grace that is until he tries to take out (unsuccessfully) the stairs to the stage. A nervous but happy time.
Next, Richard Crum accepts an award for InHealth Technologies for all the support that they give us, including underwriting (with Bruce Medical) the banquet. Richard then passes out the Dutch Helms Travel Grant checks to Debi Austin, Majella Best, Jeff Vanden Hogen and Charles Smith. Richard Najarian and Bruce Medical Supply receive an award for Bruce Medical’s support of WebWhispers by hosting the pre dinner reception and for underwriting (with InHealth) the banquet.

  • Dorothy and Tom Lennox and Luminard receive an award for their contributions to WebWhispers.
  • Donna McGary receives a appreciation award for her work as editor of Whispers on the Web, our on-line journal.
  • Judith Ramboldt and Sunny Bakken are given appreciation awards, Judith for her work on the loan closet and Sunny for her work as List Manager.
  • Jeff Vanden Hogan is given the Enforcer Award for his work as an E-Mail List Moderator, a necessary, but thankless job.
  • Randy Lemster gets an Achievement Award as Chief Moderator, another necessary but thankless job.
  • Rosalie Macrae posthumously receives an Inspiration Award for her work as a journalist and master story teller.
  • Richard Crum and Bob Herbst receive Humanitarian Awards for their work helping laryngectomees.
  • Finally Bwana Jim Lauder is given an award for his support of WW members who benefit from the voice institute scholarships give from the Edmund and Lillian Lauder Laryngectomee Support Fund primarily funded by Lauder Enterprises. I read the names of the sixteen recipients of the scholarships and Jim passes out checks to those who are attending the banquet. The evening comes to a successful end.

     

A quick word about Marriott. Anthony Martin the Director of Events for the hotel and our Major Domo, Jose, Barrientos, the Banquet Manager have made our lives easy. They have been a dream to work with. It has been a pleasure working with them. They have done the Marriott Hotel proud. After the banquet we go to the bar (what a surprise). We surround the large round table, adding chairs as people arrive. Heck, this is drinking, not eating. Ed, Barb and Yvette are there. Michael and Lisa attend. Donna McGary and Linda Rainbow add to the charm. Richard Najarian joins the crowd. I sit between Donna and Joanne Fenn. Good company! We toast the night and the recipient. Two rounds, much pleasant conversation, and it is time to go. I return to my room and get mostly packed. I have the gong and the awards that need to be sent. Fortunately they are in boxes so the beer that Ed used as a baptismal wash has dried without reaching anything within. Tomorrow I must fly to Indy.

 

Friday, June 26, 2009


I sleep until a little after 7, not bad for me these days. I begin the day with my ritual reading of e-mails, comics, news, and decide on a large breakfast. I will be traveling all day and food on planes is almost non existent these days. The buffet is excellent. They have Lox and they have bacon. I am very happy. People trickle in. As I am about to leave, I see Jahn. He comments that he got to bed early and sober last night. I feel the apocalypse. I hope that Lauder and the German Contingency make up for lost time on Saturday.

I return to the vendor’s room one last time to see my peeps. Pat and Michael and Ed are at the table. Jim Lauder takes a look at my Servox and makes some adjustments. He even tells me how long it has been since it was tuned. I make my last goodbyes and take the shuttle to the airport where the line to get through security is long and slow, but steady. I find a seat and plug in and start writing. A deadline approaches and I must not disappoint the Golden Goddess.

The first leg of the flight goes to Chicago. The plane is one of those huge jumbo jets, over 300 people and it is full. Thank goodness I have a window seat in a 2 seat row. The flight is non eventful. In O’Hare, I get a Chicago Style Dog. Now a Chicago Style dog is a work of wonder, It has a Vienna all beef hot dog, yellow mustard, relish a color of green found nowhere in nature, hot peppers, cucumber, tomato and a dill spear. Celery Salt is sprinkled over everything, but I skip that. The only problem here is the dog is a jumbo dog and that is too much dog for the mix, the peppers are larger than the classic small sport pepper, but still mighty hot. I eat one. I am refreshed and ready to wait for the final hop to Indianapolis and home.

 

Golden Gate Bridge Golden Goddess and the Golden Gate Bridge Scoma's
     
Scoma's San Francisco San Francisco Downtown
     
Seting up WW Table Dr. Singer A rare picture of Jim Lauder in a tie
     
Pat working the WW Table Awards Awards
     
Table 1 Bob Herbst tends the gong for the departed Casey Cooper Winner
     
CC Winner Dutch Helms Travel Grant Winners Richard Najarian
     
Tom & Dorothy Lennox Donna McGary Jeff Vanden Hogan
     
 
Bob Herbst & Richard Crum Voice Institute Project Scholarshp Recipients  
     

 

 

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 49 new members who joined us during June 2009:

 

Frank Argiento
Boynton Beach, FL

Frank Bakara - (Caregiver)
Gilbert, AZ

Linda Sue Bakara
Gilbert, AZ

     

Ellen Bauman
Highlands, NC

Darlene J. Bolone
Almont, MI

Lisa Buesser
Tuftonboro, NH

     

Pamela Cotterall - (SLP)
Townsville, Queensland, AUS

Glen Coyle
Norman, OK

Bill Charles Cross
Oklahoma City, OK

     

Billy Charles Cross - (Caregiver)
Oklahoma City, OK

Grace DeFrancisco
Maple Hts, OH

Vincent DiPietro
Shirley, NY

     

William E. Dolan
Appleton, WI

Elena Golubev - (Caregiver)
Brooklyn, NY

Grigori Golubev
Brooklyn, NY

     

William Harless
Laceys Spring, AL

Wade L. Hampton
Norwood, NC

Judy L. Hice
Lancaster, CA

     

Karen Howells
Fountain, CO

Charles Jacques
Largo, FL

Joanne Kitchen - (Caregiver)
Lakenheath Suffolk, UK

     

Rick Kitchen
Lakenheath Suffolk, UK

Bonnie L. Lucas
Salem, VA

Phil Lussier
Orange in CA

     

Mike Martinez
Glen Rock, PA

Anthony Mason
Auckland, New Zealand

Di Mason from - (Caregiver)
Auckland, New Zealand

     

Dennis Matsumoto
Kaneohe, HI

Sheryl Matsumoto - Caregiver
Kaneohe, HI

Michael J. McLaughlin - (Caregiver)
Liverpool, NY

     
Paul D. McLaughlin
Liverpool, NY
Alan Menuey
Hoyt Lakes, MN
Ronald Mike Moses
Ralph, AL
     
Peggy Ann Nelson - (Caregiver)
Laceys Spring, AL
Barbara L. Paul
Old River, TX
Clark E. Powell
Conway, AK
     
Frank Ricci
E. Providence, RI
Dennis Rose
Atlanta, GA
Rene Rosado
Henrico, VA
     
Geneva A. Sharpe
Franklin, IN
Angeline L. Leu-Smith
Lincoln, NE
Ricky Splett - (Caregiver)
Wilkes-Barre, PA
     
Debbie Tarbay - (Caregiver)
Virginia Beach, VA
Terri Tarbay
Virginia Beach, VA
Sherri Templin -(Caregiver)
Johnstown, PA
     
Lewis Trammell
Chicago, IL
Paul View
Wilkes-Barre, PA
William Wade
Brownwood, TX
     
Rolf Wippermann
Cologne (K÷ln), Germany
   

 

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.
 
  © 2009 WebWhispers
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