November 2009

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders United We Talk News & Events
VoicePoints Jodi Knott Weather Outside Education-Med
Vicki's Midnight Train Vicki Eorio Caught In The Middle Experience
Between Friends Donna McGary Baby Talk Commentary
Practically Speaking Elizabeth Finchem ES Sweat Equity Education
Ramblings Of A Loopy Lary Mike Burton Food, Flights, & Fear Experience
The Speechless Poet Len Hynds A Dreadful Thought Poetry
Travel With Larys Marona Hewitt Serendipity Search Travel
Editor's Mailbox First WW Pres First Letter To The Editor Education
New Members Listing Welcome News & Events

 

 

 

 

United We Talk

 

Learning to talk again is something that many people think we do alone. But for every talker, there must be a listener to use as a measure of how well we are doing, to let us know they understand and to give feedback. This is not just one person. The people who surround us are more than the caregivers who are close enough to be there all the time, are not just families and friends, but the whole population that we contact using sounds.

One of my friends came up with the concept that we must come out from behind a wall of silence to re-join the world. She suggested that we find a different word, not say caregivers, for the group of people who help us talk again because it has a different meaning. My first thought was the ad I see on television for a cell phone and the guy turns to find hundreds of helpers, each who was ready to help him get where he wanted to go. What could we call people who are there for us, even the neighbor on the corner, who waves as we go by and lets us know we are still a part of his world?

How can others help? We have to come up with the ways. One of my favorites, when I was a new laryngectomee, was to say, "Look at me," not demanding and sometimes not with words, but signals. I discovered early that often people do not look at you or anybody when they talk. They glance and many times, turn to watch something else as they talk so communication is more difficult. They talk from the other room or in the car looking out the window. The clerk in the store is automatically asking how you are today, as you are unloading the cart and she is ringing it up... side-by-side with audio only. It is a little like listening to TV with no picture! People who have not lost voice and do this regularly are losing full communication with each other and they do not even know it.

We do know it but could use the help of those who have been there and we could pick up on all the methods of communication we learned. We could start an ever growing list of ideas. I don't know what to call those who contribute to our learning to talk or communicate again but as my friend and I discussed this concept and what we might call a program, I looked down at the T-shirt I was wearing, which read, "United We Stand" and said, "United We Talk." That fits.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

Coordinated by Meaghan Kane Benjamin, M.A., CCC-SLP

 

                                         meaghan.benjamin@mac.com  

                 

 


The Weather Outside Is Frightful, but The Stoma Doesn’t Have To Be!

 


It’s that time of year! For the laryngectomized individual, who now breathes via the stoma rather than the nose, seasonal changes can be particularly difficult.

The change in the weather, cold or warm, can cause changes in the mucus emitted from the stoma. The changes can vary from thicker mucus, thinner mucus, tinted blood (less than a tsp amount) in the mucus, mucus plugs and/or increased crusting of mucus around the stoma. This time of year, when most parts of the United States are getting colder, we turn on our heaters. As a result, the air tends to be drier, thus increasing the need for additional moisture to the lungs.

Following a laryngectomy, there are anatomical changes in the respiratory system.

The airway is surgically separated from the nose and mouth and the permanent airway opening is the stoma. Once breathing through the stoma, the nose is not able to “to do its job” of filtering, moistening and humidifying the air. Therefore, the lungs receive all the dust particles, pollen, etc. in the air. The lungs are not made to accommodate these unfiltered particles, and as a result, make more mucus, to clear the foreign particles. To complicate this process, there is no moisture to assist in clearance.

What can you do to help your patients?

It is of the utmost importance that every laryngectomized individual wear a heat moisture exchange filter (HME.) The filters are available through ATOS Medical, InHealth Technologies and Trachinaze. The filters are coated with Chlorhexidine (anti-bacterial agent,) NaCl calcium chloride salts (helps trap moisture,) activated charcoal (helps absorb volatile fumes,) and are disposable after 24 hours of use. The filter captures the warm, moistened, and humidified air upon exhalation. Upon the laryngectomee’s next inhalation, he/she is receiving his own moistened, humidified, filtered air.

Ackerstaff, Fuller (2003) revealed a decrease in:
coughing, 68%;
sputum production, 73%;
forced expectoration, 60%;
need for stoma cleaning, 52%
after wearing the filter for approximately 3 months. The filter’s advantages also include: decreased viscosity of secretions, decreased risk of mucus plugs and re-instates the normal resistance of breathing for the lungs.

The HME filter can be attached to the laryngectomee via use of an intraluminal device, which includes a Laryngectomy Tube, Barton Mayo Button and/or Lary Button. The filter can also be housed by a Peristomal attachment (adhesive adhered around the stoma.)

Keep in mind a stoma cover, laryngofoam filter, bandana, etc. does not benefit the laryngectomee in the same manner as an HME filter. These types of devices are purely a “COVER.”

The speech pathologist should evaluate the patient to determine which type of attachment and HME is best suited for each patient.

In addition to wearing an HME, it is recommended that the laryngectomee utilize sterile saline for inhalation. This consists of “squirting” 3-5cc of sterile saline into the stoma 3-5 times per day. This will make the patient cough… but it adds extra moisture and assists in keeping the secretions thin!

Additional tips include: using a cool mist humidifier, maintaining your hydration and use of mucolytic medications (i.e. Mucinex.) after checking with your physician.

Jodi Knott, M.S., CCC/SLP
Clinical Coordinator of Speech Pathology and Audiology
MD Anderson Cancer Center
 

 

 

 

 

Caught in the Middle


Those are lyrics from an old song that go on to say,
“Caught in the middle of life and fantasy,
Caught in the middle is where you seem to be,”

That is what I seem to be feeling but let me explain.

I was so moved by Donna's article a couple of months ago when she discussed the wonderment and joy of her first grandchild. She did a good job of articulating the emotions a new wee baby can evoke. And when you are older as we are, the emotions are the same as when we had children, yet so different! Perhaps because we have lived and loved longer and have such an array of mis-steps and bad decisions, this little bit of perfection is our second chance to experience the miracle of life again.

On the other side of our lives for many of us, are our parents. Even if they have passed, no, especially, if they have passed, we think we have ceased the mental wrestling , the emotional tugs of war, the selective memories, the guilt filled remembrances. we really are “caught in the middle of life and fantasy”.

Do you believe in communications from departed people who were important in your life? Do you believe that they can still touch you? Give you instructions? I would like to believe that my father, who was also a lary, gives me support from heaven, that my beloved grandmother gives me a hug scented with lavender, that various aunts and uncles continue to pass on their Irish humor. I am not sure about my mother. Our relationship was always a love-hate one, intense in its extremes. Please understand, I loved my mother, still do. The older I get, the more I understand what made her behave in ways at the time were confusing for a pre-teen, teen-ager, and even a married woman with children. Age did not bring wisdom to either one of us. When she died, I was grateful that her death was painless and quiet and that she was surrounded by family. When she died, I remember not experiencing the intensity of emotions that my sisters displayed. I was relieved for her because I believed she was never really happy.

So like Donna, I recently had a joyous time with my three beautiful grand daughters (3 under the age of 3!). I was amazed, touched, uplifted, inspired, and yes, joyous. My thoughts did wander to my mother, knowing she would have also loved these precious babies as long as they were two generations removed. She also would have found fault with the parenting of the parents, the decorating of their home, the lack of imposed table manners, and the looseness of nap times and bed times. Dr. Spock and Kathryn would not have approved! It gave me pause and also a smile about how much things have changed.

When I got home I was going through a basket of a variety of cards that I keep on hand in case I need one and can't get to CVS to select a special one. I have had this basket for years, have moved it from several cities. It is almost a catch-all. If I see a card that I like, I buy it even if I don't yet have an occasion for it. Because that is my hoard of cards and thank you notes, I go through it often, as does Frank.

So I was looking for a wedding card. Our vet who cares for our menagerie of pets, recently got married. As I was going through my basket, there was a beige page of stationery. Now most of my informal notes are the same color of beige but this one was folded over. When I opened it and scanned it, I dropped it as if it were hot. I looked around to see if anyone else saw what happened. It stayed on the floor for awhile as I continued to go through the basket, card by stationery page by card. I could not find a similar one.

The note was from my mother! She died seventeen years ago. The color of the page is the same as my casual notes. However she had her name stamped on the top of the page. (if she could have afforded it, she would have had it engraved. She loved the finer touches of life that she could not afford.) To her it was to be expected that your name was on your stationery.

The note was very short, just a few lines. She was recommending a book called “You Can Have It All”, a book reviewed by Oprah. She said we should come see them, signed “Mom”.

I looked up the book. It is a self help book she obviously felt I needed. It talked about forgiveness and relationships. Now that is a message! If I received the note many years ago, I don't remember it. I don't remember putting it in my card basket. I don't remember seeing it once in the last seventeen years. The advice to forgive was valid when she nudged me with the note and it is more valid now as I approach the latter part of my life.

The words of the song come back to me, “caught in the middle of life and fantasy”. Also caught in the middle of two generations and all the emotions that come with being caught. And I must admit, it is difficult to tell the difference between life and fantasy. What memories of my mother are fantasy and what are true life? Will it be the same as I store the memories of my grandbabies growing up? Which will be fantasy and which will be life?

And what about you? Are you in the middle? Are you touched by the emotions evoked by two generations? Does it help to share? Or is it best to stay in the middle.

Come get on my train and let's talk.

 

Vicki

 

 

 

 

 

Baby Talk


Perhaps some of you read my post to the WW list about my concerns as a “vocally challenged” caregiver for my baby granddaughter. The response was both reassuring and heartwarming. Not one of you snorted like my son did, when I showed him the responses. “Well of course, Mom, it’s not a problem. Everybody understands you and recognizes your voice…so does she. She’s not going to start sounding like a robot, just because she hangs out with you.” Empathy is not his strong suit, obviously.


I was a bit miffed at him but, apparently, he made a good point.

Exhibit A.


I specialized in adult speech problems as a speech pathologist, but had to take courses in speech development and child language as part of the training. You mentioned being worried about your granddaughter's "language development." I believe you mean "speech" rather than "language." There is no difference in "language" between a laryngeal and alaryngeal speaker. As far as "speech" development goes, yes, your speech does sound different because of the difference in "voicing" and the limitation in modulation. I would not worry about hampering your granddaughter's speech development by your use of an artificial larynx. She will be exposed to "laryngeal" speech via TV, possibly pre-school exposure, and virtually every other speaker with whom she comes in contact. Also, it will be "natural" for her to add intonation to her speech. I think it would be difficult for her to mimic monotone. The natural emotions associated with speaking tend to vary the pitch without conscious effort. Bottom line, I would not give it a second thought. I think normal laryngeal speech intonation patterns will develop just fine.

Zilpha [Zilpha T. Bosone Ph.D, SLP]


There was more.

Rita, a Brit living in Texas reported that her young son knew full well what his Mum was saying even when she had to mouth it…he would turn away so he didn’t have to “listen”. When he wanted her to talk to him he would put his finger on her trach tube. Eleven years later he has no problem talking about anything… ever. Apparently the only regret his mother has is that all his chatter is with an American accent!

I heard from dozens of empathetic WW members, all basically saying the same thing, “Lighten up.” They said it very nicely and supportively and with endearing stories about how their grandkids/nieces/nephews/kids all adapted just fine, but the bottom line – I was being a worry wart.

Miss K demonstrating the latest
oral adaptor device

I want to thank all of you who took the time to respond to my fears. There is so much that is different for us now that sometimes we lose touch with those things that have not changed at all. Friends say they can still hear my Maine accent even with the Servox and Kayleigh definitely recognizes my voice. She is fascinated by my Servox and like all babies, wants to put it and the cord in her mouth. That is not allowed, obviously, so I used one of the orange base protectors from Jim Lauder and fashioned a baby toy for her. Now I know this is just Granny Buzzy talk, but I swear she grabs that thing and brings it up to her mouth and starts her baby talk to try to imitate me.

Obviously, she is not imitating me, as endearing a thought that may be. Regardless, the other night my son walked into the room as she happened to say DaDa and if he can claim it, so can I!


One of the points made repeatedly in your responses was the resilience of children and their adaptability. More than one person wrote, you give her the love, she’ll figure out the rest. When I Googled infant speech/language development, I came across an interesting study which seemed to indicate that babies born to deaf parents using ASL (American Sign Language) babble in sign language. Apparently their hand movements were not as random as those of babies of speaking parents. The deaf babies seem to recognize some of the common patterns of ASL and were practicing communication, the same way Kayleigh is with her dadada, mmammm, nineninene chatter. One of the most compelling questions that this study raises is the relationship between language (brain) and speech (vocalization) development. It is a complicated and fascinating subject which I am struggling to understand.

There is some disagreement among professionals over whether a baby’s bababa is just exercising her vocal cords, mouth and tongue as she experiments with these new skills or actually imitating and practicing real speech. I think it is reasonable to assume that it is a bit of both. Certainly, if parents and caregivers reinforce a baby’s babbling, by smiling with delight at every DaDa and asking enthusiastically “Where’s Daddy?” she is going to make the connection eventually.


I can do that. Peekaboo works just fine with one hand and Patty Cake adapts very well to knee slapping instead of hand clapping. “Here’s the church and here’s the steeple…open the doors and see all the people” is problematic, but if you read my column last month about God, you will understand why that is one game I can easily jettison! Baby Kayleigh has a most impressive and expressive range of coos, chortles and vowel/consonant strings. I have a pretty good vocabulary.

All things considered, I think we make a great team.

 

 

 

 

 

ES “Sweat Equity” Becomes a Bargain



As a practical matter we all like to keep a few coins in our pockets for a little financial cushion. In today’s economy we can appreciate how important saving has become, and purchasing only the necessary items we can safely afford. There has been a shift in the market place. I enjoyed the look on a clerk’s face when he offered a cash refund, and I said, “I accept cash.” We laughed at the turn about.


Have you noticed the surge in do-it-yourself and creative projects? As a lifetime knitter, I am aware of the crafters movement to make “a little serious money on the side”. People are finding new ways to use their hobbies and interests to not only express themselves, but to support themselves. How rewarding, especially in tough times. I learned the value of delving further into a new creative art post op in art classes learning to draw, sketch and paint.


Where I am going with these analogies? Ownership. One of my favorite quotes attributed to George Washington is “Nobody brushes your coat quite so well as you do”. I can relate that thought to the success of Habitat for Humanity. This program requires “sweat equity” from the new homeowners as the homes are built. In the end they have experienced the help of a generous team, saved a bundle of money, and they own (in more than one way) a home they helped to build from the bottom up.


Of course there are people who enjoy the option of paying for a home built by a construction crew. Some have little or no say in the finished product. It’s faster and easier, but seldom less expensive in the long run. Sooner or later this new home- owner bears the cost and work of moving in. This isn’t too different from new laryngectomees who need to learn how to use an EL, TEP or ES, if they want to communicate effectively.


The most successful esophageal speech students I’ve worked with were willing to put in sweat equity to achieve success. Some really have to dig to find someone who can help them learn the ES techniques. There are many tricks we use to compensate for the loss of a voice box and lung air. In my own post op experience I had a smorgasbord of helpers all contributing toward the voice I finally achieved.


There are three levels that we sometimes refer to as primary instruction in ES and the correct way to practice while getting started. Next, we work on intermediate usage of ES for frequently used phrases, and conversation. It is entirely possible to reach advanced ES refinement so fluent it can sound very much like a voice with a larynx. When used correctly it appears to be effortless.


Fluent esophageal speakers use three methods for air intake: consonant injection, tongue (glossal) press, and inhalation (nasal/mouth air drawn into the esophagus, not inhalation/exhaltion of lung air.) In previous newsletter articles I have written about a few basic rules; including the three methods of air intake necessary for esophageal speech. Last month covered consonant injection using P and T. This month tongue (glossal) press will be described as the most often used technique providing the necessary air charge into the top of the esophagus. The tongue is the hardest working muscle we have. For an ES speaker the tongue does double duty, providing the air that goes down into the esophagus, and allows the speech sounds to return up and out almost simultaneously.


Give this a try. Place the tip of your tongue where your gums and your front teeth meet, and press as if you were making a “T” sound … without making the “T” sound. Continue pressing your tongue up toward the roof of your mouth to guide the air back into the esophagus. In less than a nanosecond you need to say “Ah” before the air travels too far south. If you can master this technique with out double pumping with your tongue, or slipping in an intrusive consonant; like K for A … just to be certain you have what you think will be “enough” air, you will have developed a basic skill. Learning to use the tongue press means you’ll never be without air in the esophagus for speech. It’s a quick, silent, and free way to obtain the right amount of air for multiple strings of vowel sounds on one air charge.


Double, or even triple pumping, to load up with what is often assumed to be enough air to say an entire sentence ends up as self-defeating instead. I think this assumption comes from the belief that ES is “burp talk” based on the pre op loading the esophagus and stomach with plenty of air, carbonated soda or beer. This burst of air or gas will produce some speech, but it will come with such force that it is not easily managed for speech, and it will run out of power as it is used up. For fluent ES you need to maintain a manageable amount of air, and know how to open up the sphincter for sound to move up and out of your mouth on demand.


Accomplishing this much may put an end to, “I spoke a word, but I don’t know how it happened, or how to do it again.” Some think it is “just an accidental burp” and never find out what they are capable of with further instruction.


Can you say “ah”. How long can you stretch a “ah” sound? Softer voice will allow you to use the air for a longer vowel sound. Duration of vowel sounds increases intelligibility. Once you master 10 “ahs” on demand you can begin to slice it into ah/ah/ah, or more ahs. As you learn to manipulate the air in your esophagus you can try changing pitch. Chords on a piano, or singing a familiar song can help you get started. Changing the position of your head and neck just like you used to do when you talked will also change your pitch. Putting a little twist, or torque, on the esophagus is like changing the sounds the inflated balloon neck makes as the air is allowed to escape.


Next month’s article will discuss the air intake method - inhalation. This is a way of using air from the nasal and oral cavities into the top of the esophagus for speech. It will also help increase the ability to smell, sniff, and blow. There is so much focus on the stoma, trachea, and lungs that it seems some assume everything above the stoma is now dead space....as if our nose and mouth were unhitched from the team! I assure you we can put them all back to work in a new way.


Elizabeth Finchem 
 

 

 

 


 

Food, Flights and Fear

 

It’s strange what the effect of becoming a lary has had on me. Things I took for granted now take on a new form of importance. Simple things like my garden lawn, lush green and peppered with fallen leaves in their new crunchy brown state, that now needs clearing means yet another year has passed me by. Listening to birds sing and other people’s kids playing, watching my kids change as their hormones start to kick in. Meeting up with Mum and Dad and the rest of my family, seeing my grandsons, especially Jack, who was conceived when I went into hospital for my operation and of course Christmas. They now hold a special kind of importance to me as I am lucky enough to still be kicking around this planet, witnessing and participating in these events.

Things have changed dramatically for me, in many ways, not only physically. Stuff that used to anger me no longer does, I don’t have time for what was indeed, as I reflect, trivial in the first place. I find myself doing things that prior to my surgery I would have never even considered. I never went for fish if it was on the menu; I had always been a steak man. 2006 changed that; no teeth and my taste buds blasted into oblivion altered my outlook on food dramatically. I now tend to go for fish in preference to meat as it just as tasty and easier to eat and digest. My wife loves a French dish called Moule Marinere (mussels cooked in a cream and white wine sauce). l used to hate it with a vengeance. Not any more, we will now fight over dipping our bread into the rapidly disappearing sauce, which makes it soft enough to consume.

I am not a follower of God and as Donna McGary said last month “God has remained elusive”. To an extent I agree, but now find myself saying to myself, oh for God’s sake give it a go. My state of mind has altered to the degree that where I used to say NO, now I say to myself that I may not get another crack at this. What’s the friggin’ problem here! I am secretly having a conversation with somebody, but with whom?

I used to have a phobia with flying and we drove on all of our holidays. Once, we went to a little place called Saron, in southern Spain close to Alicante and spent three weeks in my Aunt and Uncle’s villa. It was lovely. I drove there, all 1,350 miles of it door to door (excluding the ferry across the pond into France) and back again rather than get a plane because of my fears. I was so scared of flights crashing, even though that is rare compared to the total amount of planes taking to the air!

This year we booked our holiday in Portugal going with Ray, my grown son, from a previous marriage, Jeniah (his wife) and my grandsons, Jordan and Jack, but leaving from different parts of the UK. I thought to myself, get the plane what have you got to lose? You have been to hell and back already, three bloody years ago!

Upon arrival at the airport I must admit I was frightened but Susie and our boys seem to be taking it in stride so I put on a brave face. Secretly I had been to see my doctor who prescribed a tablet for the flight out and one for the return journey.

In the end I took neither.

Susie was gob-smacked that I could now even get into an aircraft, but again the new ‘give it a go’ syndrome was coming through. Although I did have my secret get out clause in the shape of a pill in my bun bag strapped firmly around my waist, along with the rest of my lary kit for the journey to keep me happy in a way.

Flying, apart from a few lumps and bumps turned out to be a piece of piss. We had pre-booked seats for the four of us but the plane was set out in a 3 seat either side formation. We had already settled the “who had the window seat” argument between the kids that had been going on for ages, Tom having it outbound and Stuart having it inbound. I ended up on my own in an aisle seat opposite Susie both ways. Our seats were situated so that I needed to be almost looking at the ceiling or constantly adjusting my eyesight to see the small in-flight movie screen three rows in front, which was almost impossible. My eyesight not being that great in the first place I settled for my Ipod and listened to music. I could eat the food they served, even with no teeth; the biggest issue was that it was supplied piping hot and blowing it to cool was going to be my problem. So I simply removed the foil lid of the main meal, buttered my roll and generally pissed around looking trying to look busy (God knows why……..….here we go again) until I thought it was cool enough to consume. I gingerly took the first bit of food onto my fork and placed it gently against my top lip. Satisfied it was ok to eat, I popped it in. Then the coffee was served but that was less of a problem as I just left that to cool whilst finishing the in-flight breakfast.

Upon arrival at Faro airport waiting for our luggage to arrive at roundabout number 3 I was informed that the in-flight movie had been about an airplane disaster! Susie had kept this fact deliberately away from me during the flight; the kids said it was boring as they had seen it before and hoped for something better on the return home. I would have crapped myself if I had known!

None of us could speak Portuguese (with the exception of Jen who knew a few words and phrases) but their English was very good. At least they went out of their way to communicate. We are in general, too friggin lazy and expect everyone to speak our native tongue. We all think that English (or our version of it) rules. How pompous!

We have had one or two scary moments with me trying to eat and food getting stuck. At home, Susie and I cook to accommodate my condition. Our kids understand, and live with what is dished up, not that it is much different in content to years gone by but vegetables are probably overcooked to make them softer. As I said earlier fish now forms a major part of our diet which from a nutritional point of view is not a bad thing, so I have read.

We are all used to me now, not so sure about the other customers in the Portuguese restaurants were though. Even Jack, sitting in his high chair, patted me on the back a few times when something I had tried to eat appeared to get caught on its way down, saying “Grandad stuck!” Bless him! He is just over two years old but the way he catches on is amazing. You forget how your own kid(s) learned so fast. He had seen me have a similar problem with a piece of lamb which shot down and got lodged without my permission when we had a BBQ at our villa the night before. This was cured by a few slugs of beer to wash it down which was probably not politically correct but it worked for me! I took it a bit more gently after that making sure that everything was cut up small enough to consume without incident!

Thought for the month:

Why is always considered advisable never to jump a chasm in two leaps?

 

 

 


 

I have told the story many times how, after my laryngectomy, I felt trapped inside my own head with the silence, unable to speak. Whilst wired and tubed and recovering, with my free hand I started composing, feeling very sorry for myself until the joy of living struck me. This was one of those first poems, when I related my body to a large house that I was trapped in.


THE HOUSE THAT COULDN’T SMILE

By Len A.Hynds


It's dull in the huge place where I live,
dull and dismal, so quiet and grey.
No smiles, just echoes of dead laughter,
the ghosts of yesterday, passing through.

Oh for sunlight, warmth and love,
childrens toys and running puppies.
Shrieks of joy, candle-lit tree.
To live, just not reside.

To smile again, to open the doors,
the windows, my heart.



And now for a couple of satirical ones, as I promised.......................................


(Imagine that I had not survived the operation, and as my spirit hovered over a lifeless body. I would probably have composed this piece of nonsense.)


A DREADFUL THOUGHT

By Len A.Hynds


Here lies a head, that often ached,
here lie two hands, that oft did shake.
Here lies a brain of odd conceit.
Here lies a heart, that often beat.

Here lie two eyes, that often wept,
but in the night, but seldom slept.
Here lies a tongue, that whining talked.
Here lie two feet that feebly walked.

Here lies the stomach and the breast,
where loads of indigestion pressed.
Here lies the liver, full of bile.
Here lies that nauseating smile.

Here lie the bowels, human tripe,
tortured with wind, and twisting gripe.
Here lie the nerves, so often twitched,
with painful cramp, and poignant stitch.

Here lies the back, oft racked with pain,
corroding kidneys, damned chilblains.
Here lies the skin, with scurvey fed,
with pimples and eruptions red.

Its got alas, a cancer death,
compressed the lungs, and stopped the breath.
These poor organs could no longer go,
because the bellows had ceased to blow.

My spirits, Oh! so sadly sag,
I couldn’t resist that final fag.


I have suddenly realised that the word 'fag ' means something entirely different
in American. In England a fag is the end of a cigarette, or another term is “dog end”.
I put it in of course, as it was cigarettes over a long period that gave me cancer.

On one occasion, I coughed, dislodged a newly fitted valve, and swallowed it.
Luckily it made its way down into the stomach and not the lungs. With the dilator in place and driving with one hand, I made my way into the hospital, and in the car park, wrote this note for Sister Barbara Wagstaff.


NATIONAL HEALTH SERVICE PROPERTY LOST

By Len A.Hynds


Dear Babs, you must please forgive me,
I lost your Blom-Singer valve.
When I coughed it became free,
so I write, my conscience to salve.

I coughed and then I swallowed it,
to a darker recess it went.
Speechless, but anger made me spit,
such surroundings, it never was meant.

But please, instead of charging me,
can we wait until it's passed through.
To use as a spare, and quite happy,
if you want it for stock, as new.

Maybe you should warn Speech Therapy,
as a new branch of medicine is here.
So they can deal with ' Words Free '
that are now coming out of the rear.

 

 

 

 

 

The first "Letter to the Editor" was asking about the formation of the "Webwhispers Newsletter"

 

In answer to a question on how and why the newsletter was started "out of the blue" without the members voting on starting one, our first WebWhispers President wrote the following to the list on January 17th, 1999.

Hi,

If you go back in time, you will see that the WebWhispers newsletter just kind of evolved from the little summary of biographies which I put together for the Indianapolis meeting to a summary of Indy featuring the Tim Heidler saga to
something more complex as I figured out how to use PageMaker and to put files in PDF format so that they could be sent to others and/or posted on the Web site.

Since it evolved gradually as a volunteer effort and since there has never been a cost to WebWhispers for the newsletter, I never even thought to submit the idea as a "proposal" to the membership for approval.

Quite a few people have been involved in it, however, since very little - if any - of the material is original copy from me. I have generally contacted each of the individuals who have "authored" articles in advance to get their permission - as
with you on the CAL Conference - and have then sent them a hard copy (at my expense) afterwards so that they would have a more permanent record.

In any event, I'm glad you think it's great.

Best regards.

Joe Casey
 

 

 

 


 

Serendipity Search

 

Have you always wished you'd called that long lost friend? Looked over your shoulder one last time? Missed the opportunity to hug someone when the goodbyes were said? I've done my share of those.

Recently, I decided to take more chances in life and to accept disappointments with less of a punch to my ego. It's not always easy but years ago I started telling someone, a complete stranger usually, that they had "beautiful eyes" or a "sweet smile" or "great hair" and the rewards have been many. I get a bright smile, sometimes a person tells me I made their day, or they just look at me like I'm a little nutty, which just verifies my own analysis. So I took a chance lately, a chance that yielded some great benefits. It was a simple thing, just a phone call while being more inquisitive than usual, but I will never regret the serendipity search that became such a success.

A couple of weeks ago my husband and I decided to visit my wonderful friend (Pat Sanders) who had rented a condo on the Gulf Coast, right on Perdito Bay at the Alabama/Florida line. For a treat the three of us made a little side trip to one of my favorite towns, Fairhope, Alabama. Voted by several retirement magazines as one of the great retirement communities, including a mention in "Smithsonian," it's the Normal Rockwell retirement town on the Gulf Coast. Located on the Eastern shore of Mobile Bay, it sits on a 125 foot bluff. Somewhat insulated by its above sea level height, hurricanes have missed it, thus the quaintness of the old 1920's front porch houses still dominate under huge sprawling hundred year old trees with moss draped over stately branches. Yes, there are picket fences and flowers along with manicured lawns, people walking dogs and a park down by the bay where people gather to watch the sunset each night. Did I already mention Normal Rockwell?

In the little town, populated by retirees from all over the world, walking to the quaint little stores is a must. Page and Palette, a book store and coffee stop for many of the residents during the day, flavored coffees are lined up with pastries and slices of cakes, dripping with honey, pecans, and laced with cinnamon. There the three of us sipped the wonderful coffee and asked the waitress, who was also the cashier and authority on local authors, if she knew Terry Cline, an author who lives there in Fairhope with his wife, the writer Judith Richards. She did, and talked also of W.E.B. Griffin (Bill Butterworth), Fannie Flagg, Rick Bragg and Sonny Brewer. Well, they don't exactly all live there all the time, but they all have residences in Fairhope.

She replied, "Sure they all come in here a lot. I'll bet he's in the phone book or Judy will be."

Actually his wife was in the phone book so I decided to give it a try. Why not? He'd been my teacher (and Pat's) in a Creative Writing Class and gave me a lot of encouragement. So, I called, he answered the phone and they agreed to meet us for a late lunch. How about that! We were so excited to see him and Judith again, had lunch at a Mexican restaurant and it was quite an experience with five of us who like to write but also like to talk, share and learn. Now, armed with their email addresses we'll keep in touch and pass along some of our writing. He'll sell a few more books for we're already looking in Amazon.com for his titles.

We also looked up another person that I wanted to reconnect with. About four years ago, I happened to be in Fairhope with my sister and we spotted a street artist painting this beautiful beach scene. Mesmerized by his techniques, we watched him for an hour and asked a lot of questions. I found out he taught workshops but when I tried to look him up later, I realized I'd forgotten his name. So, while in Page and Palette I described the artist and our knowledgeable waitress, who had lived in Fairhope all of her life, revealed he'd bought an old garage down on Gulf Breeze Road and we'd find him down there. So off we three went and spent an hour with him, going through his old garage gallery, conversing about the town, getting information on his workshops so we could come back and learn his methods. He encouraged us to come when they have the gallery/store crawl the first Friday night of each month. Bill Harrison, an artist for sure, his shaggy grey hair in a pony tail, wearing a t-shirt with ripped and paint stained jeans, rope sandals and a few missing teeth, he still had that style that I envied.

Fairhope is full of quaint galleries, craft shops, vintage and trendy clothing shops, nice restaurants, a clean and cool visitor center, book stores, and flowers. Beware that you'll start yearning to move there and experience the life style of the locals. If you didn't know where you were, you'd think you were in Monterey, California. It is so similar. Like the California coast, flowers are abundant on every corner, hanging from the light poles, baskets in the windows, and decorative trees pruned to perfection. I've heard their Christmas season is to die for. This little place has a full time botanist and the population is around 25,000. It's a lot smaller than Monterey, a much cheaper place to live and much less population. Rush hour is six cars behind a red light.

And did I tell you how friendly everyone is? A tall, stately, grey haired gentleman, sipping coffee and reading a book in Page and Palette, struck up a conversation with us and told us how he and his wife retired there from Pennsylvania. Said he came down after reading about it, went home, packed and there they are, enjoying the wonderful climate, cheap real estate taxes, in an artsy community full of senior activities, where there is ample and good health care, including a top notch hospital.

What did I learn? The serendipity search rendered a couple of new friends and we'll go back and take those art classes and do the First Friday night crawl through the shops and galleries. We'll be there sometime this spring, sipping wine and eating cheese on snappy sesame crackers or dredging shrimp through some cocktail sauce. Why not give it a try? It's easy to find and you'll never forget the little town. Take that serendipity trip and, by the way, did I tell you I noticed you reading this and you have a nice smile?

Life is short. Live it with as few regrets as possible.

Marona Hewitt
 

 

 

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 44 new members who joined us during October 2009:

 

Amanda Abegglen - (SLP)
Kent, OH
Debra Bergvall - (Caregiver)
Walnut Creek, CA
William Bergvall
Walnut Creek, CA
     
John Biagio
Washington Boro, PA
Pam Biagio - (Caregiver)
Washington Boro, PA
David Breaux
Kenner, LA
     
Lissa Brown
Spokane, WA
Joan Cavanaugh - (Caregiver)
Wilkes Barre, PA
Shirley Davies
Grottoes, VA
     
C. Lynn Ellison
Tupela, MS
Gail Farthing
Pearl Beach, MI
Dorothy Firestine
Murrells Inlet, SC
     
Natalie Gillespie
Wylie, TX
Joe Grady
Cincinnati, OH
Roy Guerra Jr.
Temple, TX
     
Marty Hall - (Caregiver)
Fairbanks, AK
Kris Hargreaves - (SLP)
Leicester, UK
Curtiss Heath - (Caregiver)
Peoria, AZ
     
Mike Hottle
Fraser, MI
Ralph Johnson - (Returning Member)
Englewood, FL
Howard Kagebine Sr.
Chino, CA
     
Edmund Knowles
Nassau, Bahamas
Henry J. Latham
Trinity, AL
Donna Ligon
Pilot Point, TX
     
George Lindquist
Wiles Barre, PA
Steve Littler
Beulah, MI
Everett J. Lohr
Inverness, FL
     
Don MacDonald - (Caregiver)
Pearl Beach, MI
Dave Martland
Ontario, CAN
Ann Mathias
Langley, BC, CAN
     
Jennifer Covey-McKeage - (SLP)
Binghamton, NY
Darrell Morgan
Jackson, MS
Teri Simpson - (Caregiver)
Goodview, VA
     
Vicky Sue Sparks - (Caregiver)
Jacksonville, FL
Stephanie Smith
Brandon, MS
Janiel Sorenson - (Vendor)
Carpenteria, CA
     
Wesley B. Stroczko
Pembroke Pines, FL
Dadra Thomas - (Caregiver)
Spokane, WA
Robert W. Tozer
Cape May Court House, NJ
     
David W. Ware
Choctaw, OK
Joyce Ware - (Caregiver)
Choctaw, OK
Andrew Warrington
Staffordshire, UK
     
Ron Wass
Sarasota, FL
William White
Washingtonville, NY
 

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
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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.
 
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