September 2016

 


 

 

Name Of Column Author Title Article Type
The Scuttlebutt Tom Whitworth Old Salts & Boot Camp News & Events
VoicePoints Donocof & Ebersole The World of Laryngectomy Supplies Education-Med
Between Friends Donna McGary A Great Day for the Race Commentary
Speaking Out Members Meeting Your First Laryngectomee Opinion
Dear Lary Noirin Sheahan The Few and Far Between Club Commentary
My Neck of the Woods Jack Henslee Three Voices – A personal Journey Member Experiences
The Speechless Poet Len A Hynds A Little Thank-You, Please Prose & Poetry
Bits, Bytes & No Butts! Frank Klett Not Tonight, Dear.. Computers

 

 

INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp

COMMENT HERE
FEEDBACK

 

 

 


Old Salts & Boot Camp

 

I’ve been thinking a lot lately about the fact that our community includes so many people whose treatment and/or surgery was decades ago and about how much they know and have to offer all of us. It is surely a privilege to have met and to know so many of these “Old Salts”, many of whom have guided me and still do. Wherever you are on this journey, they care about you, too and so do I.

 

Only three years from diagnosis myself, I’ve also thought about those of us in Lary “boot camp”; how much we don’t know, and how easily we can feel intimidated by our own lack of knowledge and our need to ask questions. That is precisely what WebWhispers is here for. Ask, ask, ask! No two of our voyages are identical but there is a great amount of commonality among us. No matter what your question or concern, odds are very high that someone in WebWhispers understands what you’re struggling with and likely has the answer you need. The answer may begin with “Ask your Speech-Language Pathologist about” or Ask your doctor about…..” or it may begin with “That’s exactly what happened with me!”.

 

There are so many ways to ask WebWhispers, one need never feel lost in Lary Boot Camp. Even the more experienced often have questions to run by the crowd. If you’re missing out on the Mail List, our Facebook page, or our Delphi forum, jump in now. Your question or concern will likely start a discussion among our 3,600 members and answers will abound, often with more information than you could have possibly imagined. For a quick start to information, use our archives. There is almost nothing you can ask that hasn’t been asked before.

 

For now, the easy way is to type your search term in a Google search box preceeded by “WebWhispers”. There you’ll be led to personal responses and newsletter articles galore. Whether you are perplexed with concerns about mucus, stoma care, learning Esophageal Speech, or just need a good recipe for potato soup, by whichever method, ask. Along the way, information is often sprinkled with a little lary humor, too. To a laryngectomee, there is no better humor than lary humor! When we can laugh about this, we can live with it.

 

Every man is my superior in that I may learn from him." ~ Thomas Carlyle


For now, take in Whispers on the Web and Enjoy, Laugh, and Learn.

 
Tom Whitworth
WebWhispers President

 

 

 


 

“Navigating the World of Laryngectomy Supplies: The Basics”

Kathleen Moran Donocoff, MS, CCC-SLP and Barbara Ebersole, BFA, MA, CCC-SLP

 

The world of laryngectomy supplies is large and can be confusing, particularly if you are a patient or clinician new to the condition. Some basic supplies are relatively easy to buy; for example, wipes, toiletry bags, and tweezers can be found at a local pharmacy, Target, or Walmart. Specialty supplies are a bit more complicated.

 

The goal of this article is to provide an overview of the necessary specialty supplies as well as to describe the basic steps a person who underwent laryngectomy should take when obtaining their specialty supplies. There are many supplies we are not directly discussing in this article; however, the route to purchasing will likely follow a similar pattern. Also, please understand that insurance coverage and policies vary by plan and so, in turn, we must be fairly broad in our discussion of reimbursement. Lastly, this is the first of 2 articles on supplies for the total laryngectomy.

 

You will notice that we did not include any tracheostomal speech supplies (i.e. hands-free valve, TEPS) in this article. Due to the extent of variety in these supplies, we will provide an overview of them in the second article in this series.

 

Here are the basics:

 

Electrolarynx (EL)
An electrolarynx is an artificial larynx, or voice box. It is a mechanical device that makes a buzzing noise, which replaces the sound once created by the vocal folds. When placed on the neck, cheek, or in the mouth (with an adaptor), one can talk by pressing a button and mouthing words. An EL is essential either as a primary method of communication, or a backup method of communication. There are a range of devices on the market that range from $200 to >$800. They vary somewhat in size, weight, tone quality, battery type, and pitch features. Ideally, a patient has an opportunity to try several models/brands and choose the one s/he likes best.

 

Heat Moisture Exchanges (HME) Cassettes


An HME replaces the function of your nose when breathing by warming, moisturizing and filtering the air. It is a small round cassette with a filter in it that sits over your stoma. The filter is designed to trap warmth and humidity so that you are breathing in clean, warm, and humidified air. This is good for your lungs and will reduce mucous production. An HME also provides resistance during breathing, similar to the resistance your nose and skull provided prior to surgery. This resistance helps maintain respiratory muscle strength. The HME fits into your laryngectomy tube or baseplate housing. There are several manufacturers of HME devices, each providing a variety of types of HME. For example, some HMEs provide more moisture, less resistance, or improved filtering of microbes.

 

Laryngectomy Tubes and Buttons
A laryngectomy tube is a soft, silicone tube that fits into your stoma. Since your stoma is surgically created, it will never close completely. However, our bodies like to heal and this can cause your stoma to shrink. You stoma is your only airway – it’s important that it doesn’t shrink! After surgery, many surgeons recommend that their patients wear a laryngectomy tube to act as a stent. Some patients may wear them for weeks or months. Few may have to wear them longer. Laryngectomy tubes are retained in the stoma by a neck strap, adhesive clips or a special base plate. A laryngectomy button is similar to a tube except that it is very short (it does not extend into your trachea) and can often remain seated in the stoma without any type of housing or attachment.

 

Adhesive Baseplate Housings
Baseplate housings are specially made stickers that fit around your stoma. The purpose of these housings is to hold your laryngectomy tube or HME cassette in place. These come in a variety of shapes and sizes for ideal adhesion.

 

Step 1: Determining what supplies you need and what brand you like best.
There are several major companies that carry laryngectomy supplies. Your speech-language pathologist (SLP) should be able to help you decide what supplies you need and what specific devices are best for you. You can also directly contact individual companies for samples. By the end of this step, you should know what supplies you need and what brand you prefer.

 

Step 2: Obtaining a Prescription.
Almost all laryngectomy supplies require a prescription from your doctor or surgeon. Typically, your SLP will assist you with getting the prescription and order form, and sending it to the company. Order forms for vendors and Durable Medical Equipment companies below are typically found on the individual company’s website.

 

Step 3: Ordering Supplies
A more in-depth list of laryngectomy suppliers can be found on our WebWhispers website: http://www.webwhispers.org/suppliers/Suppliers.asp

 

This is where things get tricky. Where you get your supplies from is dependent on what insurance you have. For this article, we’ll focus on private insurance companies vs. Medicare. As with all things, there are exceptions, but this is generally how it works.

 

Private Insurance Company

 

Option 1 – Ordering through a Durable Medical Equipment Company, or DME
Ordering through a DME company eliminates the need to pay upfront and then submit to your insurance company for reimbursement.

 

First, you should find out your DME benefits - Some people are covered at 100%, while others may have little to no DME benefits.

 

Once you understand your coverage, you’ll have to find a DME that your insurance company is contracted with. To find out what DMEs your insurance companies work with, you can call your insurance company and request a list. There are three national DMEs in the United States that carry a lot of laryngectomy supplies: Edgepark Medical, Apria, and Better Living Now. If you see these listed on your DME sheet – you’re good to go! If not, you will call different DMEs on that list and ask whether they carry the specific items you need. This can be frustrating and time consuming. Sometimes the DMEs your insurance company is contracted with do not carry the supplies you need.

 

It is important to ask your SLP if he/she may know what DMEs are in your area that cover these supplies (SLPs: reach out to individual suppliers and regional company representatives!).

 

Option 2 – Ordering directly through individual suppliers.
You can order directly through the manufacturers or vendors; however, you will need to pay for your supplies upfront. The company will help you submit paperwork to your insurance company for reimbursement. Depending on your DME policy, you may or may not be reimbursed.

 

Medicare
If you have Medicare, some products can be ordered directly through the supplier. You may have to pay upfront, in which case the company will help you submit paperwork to Medicare for reimbursement.
If you are not required to pay upfront (and this varies depending on the supplier), you may have to pay only what Medicare does not cover (typically 20%). In this case, if you have a secondary insurance in addition to Medicare, you will have no out-of-pocket expense for your supplies.

 

Take-away Point:
Determining what supplies you need and ordering them can be a complicated and frustrating process, but it doesn’t have to be.


You have resources and are not in this alone! There is more information related to resources and supplies on our website: http://webwhispers.org and http://www.webwhispers.org/suppliers/Suppliers.asp


In addition, patients should reach out to their SLPs and SLPs should reach out to the suppliers and regional vendor representatives. They can provide an immense amount of information, assistance, and support!

 

Barbara Ebersole, BFA, MA, CCC-SLP is the Director of Speech Pathology Services at Fox Chase Cancer Center & Jeanes Hospital. She is also an Assistant Director of the Temple Head & Neck Institute, Administrator for the Fox Chase Cancer Center Head and Neck Cancer Clinical Program and Clinical Instructor at the Lewis Katz School of Medicine at Temple University, Department of Otolaryngology, Head & Neck Surgery.

Kathleen Moran Donocoff, MS, CCC-SLP is a Senior Speech Pathologist at Fox Chase Cancer Center, Jeanes Hospital, and Temple Head and Neck Institute. She is also a Clinical Instructor at the Lewis Katz School of Medicine at Temple University, Department of Otolaryngology, Head & Neck Surgery.


 
 

 

 

 

 

 

 

A Great Day for the Race

 

Despite all the amazing progress medical science has made in diagnosing and treating cancer in recent years it is still a scourge which manages to deliver its fresh hell to someone’s doorstep every day. According to the NIH/National Cancer Institute website, in 2016 an estimated 1,685,210 new cases of cancer will be diagnosed in the United States and 595,690 people will die from the disease. Worldwide the numbers are staggering with new cancer cases projected to rise to 22 million within the next two decades.

 

The good news is that in the United States, the overall cancer death rate has declined since the early 1990s. The most recent Annual Report to the Nation on the Status of Cancer, published in March 2016, shows that from 2003 to 2012, cancer death rates decreased by:

 

  • 1.8 percent per year among men
  • 1.4 percent per year among women
  • 2.0 percent per year among children ages 0-19


The number of people living beyond a cancer diagnosis reached nearly 14.5 million in 2014 and is expected to rise to almost 19 million by 2024.


Progress takes time and money and effort: lots and lots of all of it. Progress takes many roads as well: prevention, detection and treatment merge with support, education and rehabilitation as millions learn to “live beyond their diagnosis”. All roads hoping to converge someday on a superhighway for the cure. In the meantime we are all on a little road race of some kind. And those damn hills can break your heart.


Webwhispers does a notable job helping our particular “brand” of survivor live beyond their diagnosis. But sometimes we want to help out another way and I want to share an experience I recently had that was so inspiring and energizing.

 

Some of you who are regular readers may recall that my nephew was diagnosed with Hodgkin’s Lymphoma four years ago when he was just 26 years old. He has had a rough battle, successfully undergoing his initial treatments only to learn within a year it had recurred and he needed stem cell transplant therapy. He appeared well out of the woods when it came back very aggressively and he has now been in a trial immunotherapy program for a year with truly remarkable results. Here in Maine he was first treated at the Lafayette Cancer Center, part of the Eastern Maine Health System and received excellent care and support. After his first diagnosis he became actively involved in their annual fundraiser called Champion the Cure when all money goes directly into research dollars and support and care for cancer patients here in Maine. His Team ROC (Run Over Cancer) has raised thousands of dollars towards this end. Champion the Cure Challenge this year raised over $600,000 and Team Roc was the third top fundraiser at nearly 15,000 and counting.


My contribution to this was exceedingly modest. I walked a 5K and raised a couple hundred dollars but the experience was extraordinary. And most of the over 260,000 participants were neither major fundraisers nor majorly fit, although some were both. Have to give a shout out to my baby bro who cycled 100 miles in under 5 hours and raised over $3000 to support his son, his family, and all of us, really.


There are fundraisers like this everywhere. The monies they raise make a real difference in the lives of people right in their own communities. Folks we often know or at least know about- folks just like us whose lives have been affected by cancer.


At Champion the Cure Challenge survivors are given a special color t-shirt. I now have worn one proudly for 3 years and have pictures of me crossing the finish line with my grand-daughters and each year the announcer has called out, “Another survivor coming across. That’s the reason we do this folks! Let’s give her a cheer!” And, boy, do they ever! This year a fellow pushing his wife in a wheelchair came up to me afterwards and said, “ I just want to shake your hand. I’m shaking the hand of every survivor and you’re my 60th.” I get a bit teery just writing this all down.


I couldn’t participate the first year my nephew and family started Team ROC and my brother told me afterward it was one of the most moving experiences of his life and strongly encouraged me to go for it the next time. I am so glad I did. Now even my son and his wife and their two girls are part of it as well as cousins, old friends, even older aunties, grampas and nanas.

 


This year with son, Emeth, wife, Cori, girls Kayleigh and Kiera and sister-in-law Mary
(brother Tom was still out on his 100 mile ride)

 

Nephew Caleb, survivor extraordinaire, wife Stevie, daughter Ava

 

As my brother says, “The reason we do this is so that all these beautiful girls can grow up unscathed by this scourge.”

 

My dad died from prostate cancer two years ago and he used to love saying this to us kids and now we pass it along to the next generations.


It’s a great day for the race.
WHAT race?
THE HUMAN RACE!


 

 

 

 

 

 

“When and where did you meet your first laryngectomee?”




Ron Mattoon - Seattle, WA
2010

No one was making patient visits to laryngectomies and I did not know any other patients. I found WebWhispers on the web and they helped me so much, especially in the first months. I saw a message about a cruise to Alaska about 8 months after my surgery, so we signed up. The cruise was the first time I meet another laryngectomy. It was fantastic!! I learned more on that cruise than I did the 10 months prior. I had a good SLP but nothing replaces learning from another laryngectomee. I made so many new friends and met several of the vendors on the cruise. It was the start of my new life, and I thank those that helped me every day.

 



Len Hynds – Newtown, UK

I never knew such people existed, until I was told. prior to the operation about the people who survived, and had a valve fitted, and were able to speak again. I never really thought that I would be one of those lucky people, as the large tumor was affecting my breathing, and I was an odd customer with metallic heart valves, pacemaker, and a few other odd bits of metal inside me.

It was my third day after the operation. when my promised visitor arrived. He sat with me in my hospital room for about an hour, and at first I was impressed with his artificial speech, but he was so unsettling, and he hated the condition that we were both in, as he told me story after story of how children laughed at him, and how adults stared at him, and even a quick glance by somebody would cause him to fly into a rage. He was thoroughly miserable during the whole time he was with me, and really had a chip on his shoulder.

Of course I couldn’t speak back at that stage, but wrote my questions down. I even tried to make him laugh, as when the nurse came in and connected me to my dinner through the nose, I wrote,

“ The food pipe up nose, is nothing new,

as Len he slowly sniffed his Stew.

Said the nurse, ‘Don’t shout, or wave it all about,

the rest will be wanting one too.”

 

That poor attempt at a poem still didn’t alter the scowl on his face.. Even when he spoke of the operation, I wrote,,,,,,

 

IN CASE YOU GET A TRAINEE

“Surgeons must be very careful,

when they take the knife,

as just beneath their fine incisions,

lurks that culprit life.”

 

That still didn’t make him smile, but I learnt a lot that day, and when I had 8 "Buddies" of my own to visit over the next 12 years, I left after they were full of laughter.

 



Ginny Huffman - Atlantic Beach, FL

I never really knew anyone who had throat cancer. Many years ago, in my hometown, Erie, PA, my grandfather took me to Eckerd's Drug Store. Mr. Eckerd stopped to greet my grandfather and spoke in a booming voice using a very large square box to project voice. I was elementary school age and very impressed with this clumsy device. That must have been one of the earliest attempts to provide a method of speech. Much later, I remember the "Marlborough Man" ad urging folks to smoke his brand of cigarette. Later, the model for those ads died with laryngeal cancer. I found it chilling but continued smoking, believing as most young people do, that it wouldn't happen to me.

Following my surgery, I was visited in the hospital by a lary, Jeff Craig, who was speaking with a TEP. I was so encouraged as I couldn’t make a sound. We exchanged emails and he was very helpful during those first weeks. It would be almost a year before I had my TEP and to speak with my own voice again was a wonderful experience.

 


 

Bob Mason – Lebanon, NJ

I met mine when I was 17 and I am now 73. My father was a Laryngectomee! When I was diagnosed in 2014 with throat cancer I had a pretty good idea what to expect. My dad had his when he was 59, worked until he was in his late 70's and passed on at 86. We were both smokers but neither my wife or my two children smoke!!


 



Dick Strauss - Elk Grove Village, IL
02/07/07

The only time I've met a lary, male or female, is at IAL conventions, at my local lary clubs or any place where larys may go for meetings. However, there was a summer morning several years ago during my morning walk when I heard a person talking to his neighbor, and as I approached I could see the man was occluding his stoma with his thumb. So I immediately said hello to him and we had a small conversation. Never saw the man again. Never have I met a female lary outside in the general population.

 


 

Jim Henderson – Whitinsville, MA

1987

My first encounter with a lary (other than at the hospital) was about 4 months after my surgery and he wouldn't even talk to me because I was using EL, other than to say come back when you don't use that thing.

 


 

Mark Swenson – Salinas, KS

2011

I live in the central part of the U.S. In Salina, KS. There is one woman in this group that I have emailed before that lives here. I was at SAMS CLUB one day when an aisle over I could hear the unmistakable sound of some body using and EL like I do. I tried to track them down but didn't have any luck at all.

After 5 1/2 years of going around this city of 50,000 people. I still get people looking and I can tell they are thinking "what the hell is that?". Others know right away and have no problem at all talking to me and don't stare or act like I need help with everything. It is a pretty lonely feeling at times since you see people in wheelchairs all the time and nobody thinks anything of it.





Tom Olsavicky - Newport News, VA

2008

About thirty years before my 2008 surgery, I had a cousin who had a Laryngectomy and used an Electro-Larynx (EL). I don't remember the type nor do I remember talking to him very much even though he only lived about 9 miles from us. He had been a heavy smoker and drinker and was not very social after his surgery.

Then the next time I saw a Lary was when I was diagnosed and visited a Lost Chord Club prior to my surgery. That is when, it brought back all the memories of my cousin. I wondered if I would be like him. I chose to use an EL but I quickly found out there was a life after the operation and there was no need to become secluded. I only wish my cousin would have had the same experiences with interacting with other Larys before he died of a heart attack while working in his garden.

 



Carl Strand - Mystic CT
February 10, 1993

I was quite resistant to meeting another laryngectomee, for what reason I no longer remember. Just before I was due to be discharged from the hospital, my wife and my speech pathologist persuaded me that it would be a good idea. As it turned out, my visitor was a well rehabilitated esophageal speaker, active in the local support group which I now run.

Richard turned out to be a good friend and an inspiration for me, although I was still resistant to the support group and meeting other laryngectomees for a few months after surgery. He died about 18 months ago after a long and successful life as a laryngectomee. I miss him.

 



Loyd Enochs - Evansville, IN

I met my first lary, Clarence Mitstarffer, roughly 2 weeks prior to surgery in a meeting arranged by our ENT surgeon. Clarence met with my wife and I to answer questions, demonstrate TEP speech, baseplate, filters and all the other paraphernalia, and generally show us that there was light at the end of the tunnel :)

He was a huge help to my wife and I and gave us a lot of reassurance that reality squared with what the surgeon was telling us. Since my surgery, my wife and I are on my ENT's list to perform the same task for other soon-to-be larys and we have enjoyed our opportunities to do so.

 


 

Rita Kinney – Aptos, CA
March 1993

One of my first meetings of a laryngectomee was at a Macy store in San Jose. I had my surgery in March and was with my daughter buying a wedding present when I heard a lady talking with an electronic device. After I saw that it gave me the courage to use my device in public. Up to then I was embarrassed and didn't feel comfortable talking with it. There's nothing better than meeting another laryngectomee in a normal environment. I never hesitate to introduce myself when I bump into another laryngectomee.





Mike Smith - North Augusta, NC

In 1976 I had just completed an enlistment in the Army, returned to the states, and one day after returning, went to work at a Department of Defense Supply Depot in Memphis, Tennessee. Exactly three years to the day, I was selected for an entry level position in the Federal Prison System. During orientation my first week in April of 1979, the facility Hospital Administrator came in to give a class, and he was a laryngectomee. He was using an EL and I can remember I had a very hard time initially understanding him. I am pretty sure he was the first laryngectomee I had ever come in contact with. Unfortunately, there has been way too much water under the bridge since then as I cannot recall his name, but many, many years later (29 to be specific), he was the first person I thought of when being told my treatment had not worked and laryngectomy surgery was necessary.

 


 

Next month’s question is:
“How has your cancer(s) changed your life?”

 


 

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

Staff of Speaking Out

 

 

 

 

 

 

 

The Few and Far Between Club


Before retiring I worked in a hospital and met my first lary when I was in my late twenties. It was my late fifties when I had my own laryngectomy, and I only met one other in the intervening thirty years, even though I worked in a hospital that specialises in laryngectomy. So we are few and far between!

 

In fact I didn’t really meet that first lary - I just heard him from a distance. I wrote about my very negative and unenlightened reaction (“Oh my God, how awful to lose your humanity like that”) last June. This time I’d like to reflect on the fact that we are so few and far between and what that means for us.
Once a year, my speech therapists invite all their larys to get together for chat and support. And on one occasion I contacted a lary who lives not too far away, and she called to my apartment. But apart from that I haven’t met any larys outside of the ENT clinic where I sometimes recognise a face from the annual meetings or hear one of our distinctive voices.

 

This is largely my own fault. I could follow up with people from our annual meetings, or with the lary who once called to my apartment. And there are a few Dubliner’s listed on the Webwhisper’s file list. When I was a newbie I fully intended to contact them and see could we get together regularly, but somehow it never happened. It doesn’t appeal to me as an idea any more. My initial enthusiasm was to do with finding a way to embrace life as a laryngectomee. But now I seem to have adjusted to a pretty full and worthwhile life, and I don’t relish the thought of making it any busier.

 

Apart from that, I’ve never been a ‘clubby’ person. Maybe it’s because I enjoy more serious conversations but easily get confused and feel disconnected somehow by lighter chatter. Also, in my book, friendships take a lot of work. They give joy, but I find it hard not to take my friend’s sorrows to heart – which tend to multiply as we all get older and illnesses and bereavements become more common. So I’m not seeking new friendships and struggle to keep up with my present circle.

 

These are some of my excuses for not getting in touch with the handful of Lary’s who live nearby!

 

What would it mean if ‘we’ were more common? If each of us had known a few laryngectomees before our own initiation into this club? I suppose it would have made the transition to lary life a bit easier. And it certainly would make a difference to supporting technology and services. I have no doubt there would be good-quality artificial voices available if we represented a significant market for the medical devices suppliers.

 

I did a bit of a trawl through the literature on electrolarynx design during my first year as a Lary, as I was so appalled at the unpleasant mechanical tone of what I’d been offered and my muffled speech half-drowned-out by the background buzz. When you think of the excellent synthetic speech you now get even from electronic games or children’s toys, I was baffled as to how our voices could still sound like the dalecs from Dr. Who! I thought it must be an area that research has somehow ignored.

 

But I found that a great deal of research has been done – much of it very exciting. For example, there have been projects demonstrating that the electro-larynx can be activated and it’s pitch controlled using signals from what is left of our laryngeal muscles and related muscles in the neck. So all we’d have to do is remember to pretend we still were talking in the old way and our electrolarynx would switch on to let us talk, and its tone would rise and fall as in normal speech. Another line of research has produced a very pleasant female voice which uses something like a miniature whistle inserted into the TEP. And as far back as 1999 a group reported a novel electrolarynx design based on natural speech signals. So if we had even a week or so of notice before our laryngectomy, we could record our speech and this could later be used as the sound basis for our individually tailored electrolarynx. Another idea was to decode the very slight ‘whisper’ sounds we can still make and use these to drive a high quality speech synthesiser – of the kind you nowadays hear in automated telephone calls for example.

 

Very many of these research papers started with words something like: “Despite huge strides in speech processing over the past decades, the electrolarynx in use today remains largely identical to the first design which appeared in the 1950s”. And sadly, all the wonderful ideas I’ve mentioned above haven’t made any impact on our lives. They get as far as a college laboratory and some fascinating research papers, but not into commercial production. I lamented about this on the WebWhispers forum until Jim Lauder told me of the reality of the very limited market for laryngectomee goods, which could never repay the kind of investment a firm would need to make to get any of these wonderful ideas into a marketable product.

 

Apart altogether from giving us better voices, the medical and emergency services would be better able to look after our needs If we represented a bigger section of society. Some recent posts in the Daily Digest about the difficulty of getting a lung function test shows that even hospitals who specialise in laryngectomy don’t carry this equipment as standard. Another recent Digest thread on the need for us to wear emergency bracelets illustrated some cases where emergency paramedics had no idea how to get oxygen into a laryngectomee’s lungs. The training DVD developed by the IAL a year or so ago, was a first attempt to address this knowledge deficit. But how long will it take for that to become a standard part of paramedical training? And, if they go for many years without ever having to put this into practice, how many will remember to direct the oxygen to the stoma when we’re depending on them for our next breath?

 

So there are definitely disadvantages to being such a small subgroup. But that makes the role of WebWhispers more important. Many people attest to the fact that the Digest, the Newsletter and the Library provide a greater source of knowledge and expertise than the medics they meet in hospital. And it gives us all a useful role – to fill in for the gaps in the medical service by answering questions on the Digest and raising new issues that need exploring. This need to rise to the situation and contribute to the well-being of other larys helps us embrace our own condition.

 

And, though it sounds like a cliché, that’s the real secret of happiness isn’t it? Embracing the cards life deals you. No amount of excellent health care, nor the most melodious and eloquent voice can compensate for the misery accompanying the tyrannical thought “this shouldn’t have happened to me”.

 

So maybe after all, small is beautiful!

 

 

 

 

 

Three Voices – A Personal Journey

~Jack Henslee

 

The loss of voice can be a very traumatic event for almost anyone and in some cases it is devastating. Especially if you live in a third world country and your annual income may be less than the cost of an electro larynx. I write this because it was suggested that I share my experience of having lost my voice not just once, but three times.

 

My first experience was admittedly brief being only about 4-5 days, but it did get my attention. I was first diagnosed with larynx cancer in 1979 and based on the advice I received from the tumor board I skipped radiation (chemo wasn’t used much, if any, for head & neck cancers at that time) and opted for surgery as having the best possible long term outcome. It was supposed to be a total but when I awoke I was told that they were able to remove just the vocal cord the tumor was on and then reconstruct a new one. The end result was a “partial” laryngectomee with no stoma, and a very raspy but not too loud voice. I was able to regain some speech in just a few days and it got better over time. So in a matter of several months I went from not expecting to ever speak again, to barely speaking, to almost normal speech.


Then 9 years later the Dragon returned and this time there was no tumor board and only one choice; total laryngectomee or die. No radiation option, again no chemo, and no time to contemplate. My airway was almost totally closed and they said it was now or maybe never.

 

This time it was 17 days in the hospital, a new way of breathing, the fight with mucus, and of course no voice at all. This quest for speech started with an AT&T electro larynx that was provided free, courtesy of the state of California. I had seen one person a few years before trying to use one and he wasn’t very successful, but I was sure that I could do much better. Gee, how hard could it be? Push a button and talk!

 

My speech therapy wasn’t scheduled to start for another month, although I had an initial visit to explain my options while in the hospital. But I wanted to talk now and made my wife drive me 50 miles to pick up the AT&T because I didn’t want to wait the 3-4 days for it to be mailed. I was devastated when I found out that all I could do was make awful buzzing sounds and not a single intelligible word. I felt stupid, inept, uncoordinated, and ashamed that I couldn’t do something so simple as to just push a button and talk. That was really the only time I think I felt depressed.

 

Fortunately a friend’s father happened to be a laryngectomee and he came over to help me. In a matter of minutes he explained that my neck was too swollen and it might be weeks or longer before I could use it on my neck, then he showed me how to use it on my cheek. That worked but not very well, (the AT&T had a head much bigger than today’s models and it was very hard to get a good seal anywhere) but after a few weeks my neck softened up and things got better.

 

Speech therapy was a 50 mile drive for a 30 minute session on esophageal speech (ES) and AT&T improvement, with a co-pay, and zero improvement. But I was determine to learn ES so I bought some books and went to work on my own without ever even hearing an ES speaker. Now some people catch on very easily but that is a minority, and most never achieve what would be considered good ES generally due to a lack of quality speech therapy. In my case I struggled with getting an air injection for a long time because I just couldn’t visualize what the books said to do, and I had no one to show me. Now I worked really hard, up to 8 hours some days shut up in my room with a mirror, tape recorder, and various beverages to help me “burp” which was a major mistake. Then, after 5 months I accidently made an effortless “sound” and immediately repeated it over and over. Then came a word, words, sentences, and lots of practice with a young SLP student at University of Pacific. 3 months later I had pretty efficient conversational ES and it served me well for 7 years.

 

Fast forward to 1995 and one more visit from the Dragon. This surgery was a marathon 12 hours to reconstruct the trachea, remove lymph nodes, and pull up the chest to reconstruct my neck. This left me with a very weak voice because now the neck muscles were too weak (my terminology) for me to control the injected air. I could get a little more volume if I “pinched” the neck and tightened it but I decided that if I needed to use a hand to speak it was time for a TEP. Now the TEP’s were very new and that option was never offered to me when I first had my total. But shortly after learning ES I did meet with a TEP user and was very impressed with his voice and ease of use. But, he also told me that it required removal 3-4 times a day for cleaning and he had to have his wife do that for him. I’m not sure if that was standard practice back in the early TEP days but it discouraged me from wanting one.

 

So now, 37 years later, I’m on my 4th voice. I have said for years in some of my writing, and the occasional lecture I give, that “Communication is the one thing that makes us most human, and speech is the preferred method.” I sincerely believe that, but I feel that I should also add that just maybe I have had five voices. My original, the 3 above, and what you are now reading. Communication, the one thing that makes us most human! Never be Voiceless!

 

 

 


 

 

A Little Thank-You, Please



I was on night duty and walking in to the station for my break, with another PC from an adjoining beat, when we saw the roof of a storage garage well alight. Running towards the place, I said, " There's a night watchman in there. I bet he's asleep in that back room. Get the Fire Brigade and I will make sure the old chap is alright."

As my colleague ran along the road to the nearest telephone, I banged on the side door but could get no answer, and I could hear wood burning on the other side. I climbed up onto a partition wall of the premises next door, and I could look down into the room where the night watchman usually stayed. I could see through the dirty window that he was slumped over the table, and the room was filling with smoke. I shouted but couldn't rouse him, so leant across the gap, and ripped a sheet of corrugated iron from the upper wall of the garage, and climbed in and down to the floor level. Burning timber from the roof was falling on all the cars parked in the garage. The door of the back room was burning. I kicked it open, and with difficulty carried the old chap on my shoulder, out into the main garage, but my means of entry was now well alight. I carried him still unconscious through the falling timber and now burning cars to the main doors., but they were padlocked on the outside.

The vehicle at the very front was an ex-army Fordson, exactly like one I drove in Egypt, so after pulling burning wood away from its doors, I laid the old chap on the passenger seat. I got in the driving seat, thank god the engine started straight away, raced the engine, and slipping it into gear I charged those big wooden doors. Not only the doors, but the framework around it went crashing out into the road. My colleague outside said I came out like an explosion, in a shower of flames, sparks and smoke.

The fire brigade arrived and went to work, and an ambulance arrived for the watchman, who by this time had recovered, and realised that I had driven him from his place of work by a little bit of mayhem. Admittedly he was still groggy when he said to me, under glowering brows," I didn't cause that damage to the breakdown truck, or to the front doors. If I lose my job over this, I've only got you to blame." Not a word about saving his life!

My sergeant realised that I had burns on both hands, from pulling wood out of the way in trying to get the old chap across my shoulder and to the truck at the front. I was taken in the van to Guys Hospital, where I think the nurses went over the top in bandaging both hands.

When I got home, I had to wake Tilly, and ask her to undress me, as it was impossible with both hands out of action. Her sleepy comment was, " And what have you been up to now?"


During the last few months of the last war, a truck load of us were sent on a mortar firing course down into Dorset, at a place near the stunning Lulworth Cove. The nearby Purbeck Hills, its villages, farms, homesteads and all the roads had been taken over by the army at the beginning of the war as a training ground, and for the previous two years had been used by an American tank division. All civilians had been evacuated several years before, and every lane leading into the area was blocked by mountains of barbed wire.

I remember talking to a homesteader, who was gazing through the barbed wire at his deserted home in distance, and as we all knew that the war could not last much longer, he wondered how soon they could all return.

I have converted his sad words into a poem.........


A Village in Dorset

By Len A.Hynds


I can only see the earthworks,
that keep me from my home.
Beyond, behind, the danger lurks,
beside my garden gnome.

The army took our village,
to train for the 'Bocage.'
Like vikings they did pillage,
as against my house, they charge.

Mines are laid, just everywhere,
even in the loo.
They enter warily, if they dare,
those Grant and Sherman’s crew.

Dragon’s teeth are on the grass,
like soldiers on parade.
Midst debris of war, and shattered glass, 
our hearts in sadness fade.

So when this war is over,
and our homes we can reclaim,
we'll surely be in clover,
when they re-build, just the same.

If what they learnt, around my home,
saved some young soldier’s life;
I am content, as is my gnome,
and of course, my lovely wife.

 

 

 

 

 

 

 


Not Tonight, Dear...I Have An Election!


Never talk politics with family and friends...so I won't!
Donald Trump has predicted that the November elections will be “rigged.” Most politicians and pundits dismiss that idea as “impossible.” But according to many security experts, thousands of electronic voting machines that will be used across the country on November 8 are so riddled with security holes that the possibility of manipulating the votes they record cannot be waved away.


If the Government experts are right ... never mind, they must be; after all they are always looking out for our best interests. Facebook's entire business line depends upon their being able to provide a complete assurance of privacy and security to its users. In fact, Facebook could well meets the election needs of the U.S considering the security they own. Here's what you need to know about how Facebook maintains control over your posts and others:

 

http://www.cnet.com/news/how-zuckerberg-facebook-censors-korryn-gaines-philando-castile-dallas-police-your-posts-faq/


Speaking of elections if you are as tired of the daily (or hourly) nonsense we are bombarded with from the camps of the candidates you can take some comfort in knowing it's almost over (I hope). The candidates plan the majority of their paid air time for June through early November. The crescendo of noise they will produce in the last 30 days prior to Election Day all but rivals a group of star struck teenage girls at a Justin Beiber concert. And has about as much credibility.


There are varying ways to avoid the noise including turning off the tubes and hiding in a closet...no, not any more! For you Facebook users Chrome has an offering for you.


“There are ways to filter out movie and TV spoilers, so why can't there be a filter for the political stuff? There is, in the form of the Chrome extension Remove All Politics From Facebook. It's basically a toggle switch. When activated, it filters anything and everything political out of your feed."


There is more to read and even a short video to set your heart a flutter...now really who can ask for more! Follow the link below to continue reading and learn how to add this extension to your Chrome suite of extensions:


http://www.cnet.com/how-to/filter-the-politics-from-your-facebook-feed/?ftag=CAD3c77551

 

I have found one bit of political news that I felt was worthwhile. There is a gentleman in Colorado who is running for a State Congressional seat in the 1st District. Casper Stockham is a Uber driver who is running on the budget of a magnetic sign on his Hyundai. Mixing his driving and people skills he is conducting his campaign in the true spirit of Cincinnatus. Read more about this inspiring and inspirational man at the link below:


http://www.cnet.com/news/meet-the-candidate-campaigning-for-congress-via-uber/

 

Apple has been teasing us with any hard news on the anticipated launch of its latest phone the iPhone 7. Launch dates are anticipated between October and March 2017. Seems the larger than usual time frame is allowing for varying degrees of "new and earth shaking" features. More news should be released in the coming days and weeks. Right now Apple has felt the hot breath of Samsung's Galaxy phones breathing down their market. In case you haven't seen the recent Galaxy 7 and it's humongous list of features you might want to check them out if you are in the market for a new phone. For more info on the Galaxy 7 and its features you can click on the link beow and read all about it at the Samsung website:


http://www.samsung.com/us/support/owners/product/SM-N930VZKAVZW#productInformation

 

Windows 10 Anniversary Update has been causing a few wrinkles in the Microsoft World. There have been what appears to be driver failures, which causes some hardware devices to stop functioning as they should. If you have a webcam (as most of us do) you may notice it has taken an unapproved day off. The good folks at Dave's Computer Tips provides some answers for us.

 

https://davescomputertips.com/anniversary-update-breaks-millions-of-webcams/?utm_source=wysija&utm_medium=email&utm_campaign=Weekly+Recap+Newsletter

 

 

 

 


 

 

 

 

 


 

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