June 2014

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Let's Talk Synthroid News & Events
VoicePoints Terry Day, MD Reduce Burden of Head & Neck Cancer Education-Med
Between Friends Donna McGary Take My Hand Commentary
Speaking Out Members Laryngectomy Affect Your Employment? Opinion
This Lary Life Noirin Sheahan A Rabbit From the Burrow Commentary
The Speechless Poet Len A Hynds A Second Chance Prose & Poetry
Bits, Bytes & No Butts! Frank Klett Internet Happenings Computers
Editor's Mailbox Jack Henslee Where Have All The Flowers Gone? Commentary

 

 

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

COMMENT HERE
FEEDBACK

 

 

 

 

Let's Talk Synthroid

 

With so many of us being on this medication because of hypothyroidism and everyone going to different doctors, I hear tales of the way Synthroid or Levothyroxine are taken and complaints that the doctor won't raise the level even though you don't feel as good as you once did on it.

Some times, this can be purely the way you take it and what you take with it or near it. I faithfully read the instructions almost 20 years ago and have never changed the basic way I take it, but I went to the generic for three years and I have not felt energetic in a while, have even felt like a dark cloud was hanging over me and I was tired all the time. I switched because of money and I have switched back because if you don't feel good, the money is not so important.

Now that I am back on the original Synthroid, 12 days ago, and I am being a little more strict with the rules, which are not changed so much as made more rigid. I can tell a difference.

First I looked at my TSH numbers and in this period of time I have gone up several points higher than I was when I made the switch away from Synthroid. I am still within the guidelines of what is believed to be ok... However, I notice the new breed of docs are recommending that you have a TSH reading of about 1.0-2.0 (and this depends on your other diagnoses and medications).

I went to the Synthroid.com site to see what they had to say about the new instructions:

Take it alone (no other meds) in the morning on an empty stomach an hour before breakfast. Take special note of this: Do not take Synthroid within 4 hours of ingesting medications, supplements, or foods that may interact with Synthroid. Antacids, iron, and calcium supplements, dietary fiber, soy, and even walnuts can affect your body's absorption of Synthroid.

I was taking mine alone when I first awaken in the morning at least an hour before breakfast, but with my breakfast I took my all round vitamin and my calcium pill. I am trying to adjust to a new way of adding those to my lunch, since they now say 4 hours away is better.

They also say, if you miss a dose, take it later in the day on an empty stomach but if you miss several doses talk to your doctor for instructions.I noticed that most doctors give you smaller doses and bring them up gradually over a period of time. This is a lifetime medication and you should take it every day. If you go on vacation, take a few extra pills with you, in case you are delayed getting home.

There are no real hypothyroidism diets but there are some known supplements that do interfere. They say:
We know that certain foods and supplements actually can interfere with the way hypothyroidism medications work:
• Fiber
• Soy
• Walnuts
• Cottonseed meal
• Iron supplements or multivitamins with iron
• Calcium supplements
• Antacids with aluminum or magnesium

SYNTHROID® (levothyroxine sodium tablets, USP) is a prescription, man-made thyroid hormone that is used to treat a condition called hypothyroidism. It is meant to replace a hormone that is usually made by your thyroid gland. Generally, thyroid replacement treatment is to be taken for life.

 

Enjoy,
Pat W Sanders
WebWhispers President

 

 

 


 

Collaborations to Reduce the Burden of Head and Neck Cancer
Terry Day, MD
President, Head and Neck Cancer Alliance
Director, Head and Neck Tumor Center-Charleston, SC, USA

In 1998, collaborators at Vanderbilt University Medical Center including nurses, speech pathologists, laryngectomees and physicians teamed together to start what would become an annual international event that has grown exponentially since its inception. WebWhispers first ran a short reference to the Awareness Week in 2003 as events were gaining widespread support throughout the country: http://www.webwhispers.org/news/apr2003.htm

The current day Head and Neck Cancer Alliance, Inc. was the offspring of the Yul Brynner Head and Neck Cancer Foundation, Inc.(YBF). Yul Brynner was a famous Broadway performer and actor who was best known for his multi-year tenure as The “King” in “The King and I” on Broadway. The Yul Brynner Head and Neck Cancer Foundation, Inc. was created by the late actor after an abnormality was found on his vocal cord in the 1980s during a show in Chicago. With the combined vision of Yul Brynner and the knowledge and experience of Dr. George Sisson, a leader in head and neck cancer surgery, the Yul Brynner Foundation was incorporated in Chicago in 1984 for the purpose of educating the public about the harmful effects of tobacco and its relationship to mouth and throat cancer.

In 1998, The Association for Head and Neck Cancer Awareness formed by Terry Day, M.D. merged with the Yul Brynner Foundation and combined efforts, propelling Dr. Day to be elected president of the Yul Brynner Foundation. Starting in 1998, the Yul Brynner Foundation organized and directed an annual Oral, Head and Neck Cancer Awareness Week(OHANCAW), an event designed to further the education of the public and health professionals on this disease. Interestingly, the majority of volunteers in the early years of OHANCAW were laryngectomees as they were the first line of educators of patient to patient during a new diagnosis of head and neck cancer. These “outspoken” individuals organized support groups, survivor events, and free screenings. In fact, one of the leaders of this inaugural group was the late Hugh Hankins who, with his wife Peggy, were instrumental in starting this perennial event and making it grow and expand in its first few years. A strong collaboration was developed among the New Voice Club of Nashville, Dr. Ed Stone and the Voice Institute, the International Association of Laryngectomees(IAL) and WebWhispers.

This inaugural event included three locations in the United States participating and has grown annually ever since. In 2001, the name was officially changed to Oral, Head and Neck Cancer Awareness Week® (OHANCAW®) to help publicize oral cancer, the most common site of head and neck cancers. This awareness week continues this year with the Head and Neck Cancer Alliance and will continue until this disease is eradicated. The 2013 event included over 20 countries internationally and over 350 locations worldwide. In addition to the well publicized Free Cancer Screenings, there are numerous other events like 5K Runs, Survivor Banquets, Rock Concerts and even Tennis Tournaments (www.smashcancer.org). Individuals are encouraged to do whatever they can to publicize these cancers to get people diagnosed earlier and treated faster!

In 2006, the organization’s board chose to reignite the organization to form collaborations with all vested entities in head and neck cancer and renamed it, The Head and Neck Cancer Alliance, Inc (HNCA). The HNCA hopes to engage other nonprofit organizations, government agencies, advocacy groups, and cancer centers to provide a united front to enhance funding for head and neck cancer research (i.e., grantors), improve prevention efforts (i.e., education), and facilitate legislation to improve rehabilitation and outcomes (i.e. tracheoesophageal voice prostheses).

What we now know.

Since these “early” days of YBF and OHANCAW, many oral cancer patients began to be diagnosed and oral cancer was well established as the most common “head and neck cancer”. However, beginning around 2005, HPV related oropharyngeal cancers became more prevalent and these cancers now have surpassed both oral cancers and laryngeal cancers in incidence in the United States.

During the 1990s, studies found chemoradiation to be better than radiation alone in advanced laryngeal cancer prompting many physicians and patients to lean toward nonsurgical treatments. However, more recent studies have shown that treatment related side effects can be severe and there is potential that surgical treatments may result in a better cure rate for selected patients with laryngeal cancer. Nonetheless, laryngeal cancer incidence does not appear to be changing significantly in the US or UK, and the effects of radiation and surgery continue despite advances such as Intensity Modulated Radiation Therapy(IMRT) and transoral laser and transoral robotic surgery for laryngeal cancer. In addition to the obvious effect on speech, treatment can also impact swallowing function in laryngeal cancer patients and multidisciplinary care is important to prevent and treat many of these problems.

Although laryngeal cancer has historically been described to result from smoking, HPV is now known to be associated with some laryngeal cancers. Oropharyngeal cancer is now known to be most often related to HPV and efforts are underway to educate the public through diagnosing the early signs and symptoms although laryngeal cancer still remains a prime target for prevention and early detection.

It is the duty of all survivors of these cancers and also physicians to help educate and prevent future cases from being diagnosed too late.

If you haven’t volunteered for a support group, free screening, or educational event, please consider doing so by going to www.OHANCAW.com where you can sign up. Please encourage all head and neck cancer clinicians to help educate the public by offering a free community service and advertising your clinic on the free website listing.

The last OHANCAW was: April 2014. Watch for the next notices

 

 

 

 

 

 

 

Take My Hand

 


Jack Henslee knows how to ask a good question and his idea for the “Speaking Out” column has proved to be very popular with readers. I especially appreciate that so many folks we don’t ordinarily hear from respond. His SO question this month about employment is no exception but that is not that question that really has me thinking this time.


He has also written an open letter appearing in our “Editor’s Mailbox” that asks “Where Have all the Flowers Gone?” It is a heartfelt and poignant commentary on the decline of face to face support groups, volunteer education and outreach programs and IAL membership participation. There is no one reason for these changes and he explores all the “usual suspects” in his article, which I recommend you read.


Jack is a true believer in the value of face to face support groups. And I am someone who has never been to a local support group meeting. My only face to face contact with other folks like me is through the IAL annual meeting and the occasional WW cruise; neither of which are, for me, even annual events. WebWhispers is and always has been my only support group.


And why is that? Well, initially my situation was a bit different since I am not technically a lary. Maybe if I had been there would have been more outreach since I was in the Boston area and certainly one would think there are resources there. I was never able to get in touch with anyone at the only group I know of in Greater Boston and I learned of that via the internet not from my doctors. The same thing happened when I moved back here to Maine.


I just did a quick check and there are 9 members of WW from the whole state of Maine. I have never met any of them although I did talk with the wife of one via e-mail and they actually only come up here in the summer. I ran into one fellow at my local grocery store recently and was so surprised to see him occlude when he was talking to his wife I went over and introduced myself. He was friendly enough but his wife was decidedly not so I chose not to chat up WW and ask if he was a member. He isn’t because he did tell me where they were from after I introduced myself and asked but no one from that town (or even close by, except me) is on the list. I knew one other guy, a friend of a friend, a few years ago but I have lost track of him.


Not sure I could drum up enough of us to make a group worthwhile even if I knew where to look! And frankly, even if there was a group I am not sure how often I would attend. I simply don’t feel the need. Maybe I don’t need a group for more than what I can get from WW online and the IAL annual meetings (which I do enjoy immensely but can’t always afford).


But I do know that eleven years ago I drove over 3 hours to go to a local support group cookout at Libby Fitzgerald’s house. She was the first person I knew of with the same type of cancer in the same place as me. She reached out to me online as I was trying to get information about my situation and when I met her she was the first person who sounded like me. She also told me about WW for which I will be forever grateful.


So I am thinking this may be the answer. Libby and her husband John are dear friends now but I don’t see them very often. I met Pat Sanders on my first WW cruise and a friendship with her and working relationship with WW was born. I have a large network of support I see infrequently but correspond with regularly.


I am fortunate to have the benefit of the internet, including of course, but not limited to, WebWhispers and friends within the lary community. That gives ME all the support I need but I think Jack’s question raised a larger issue. Do WE have a responsibility to the larger lary community to insure that these networks remain viable? Obviously all these options are important and without leaders they falter and eventually fail.


Leadership takes many roles and it may not be as facilitators for local groups or doing education and outreach on the scale Jack was doing in Costa Rica or others who do so much to raise awareness about the dangers of tobacco in schools. Not all of us are cut out to be presidents or ambassadors.


And frankly I don’t think it strictly limited to the lary community. I think all of us have a responsibility to the world we inhabit to do some good. Jack’s question, “Where have all the flowers gone?” comes from a contemporary folksong originally written by Pete Seeger in 1955 with additional versions added later and has become an anthem for many political and social causes over the years.


Which I think was Jack’s point. We do have a responsibility as human beings to try to make a difference. Some folks go to Costa Rica and train SLPs and give impoverished laryngectomees a new voice. Some folks set up and run IAL Annual Meetings and insure that the Voice Institute continues to offer state of the art education and training. Some folks set up local clubs or internet-based ones and struggle to keep them afloat.


Some of us have more modest goals and sometimes all it takes to make a difference is simply reaching out to one person with one word of encouragement and saying, oftentimes to start just via e-mail, “Here, take my hand. I know this part of the woods. I’ll show you the way.”


“…whoever saves a life it is considered as if he saved an entire world.”
The Talmud

 

 

 

 

Laryngectomy Affecting Your Employment?

 

 

 

Linda L. Addis-Hinsk, OH - Lary since 1997

President/Cleveland Lost Chord-East

I am the Lead teacher for a preschool class in Ohio and have been since 1995. In October of 1997, I had a total laryngectomy, and was recovering from surgery using my electrolarynx as a means to communicate. My surgeon knew I taught 3 year olds and was eagerly wanting to go back to my profession, he also felt that I could learn esophageal speech so both my hands could be free. I don't believe there was a hands free TEP at that time.
Three months after my surgery, in January of 1998, I did return back to teaching, using my electrolarynx to communicate and going to speech classes to learn esophageal speech. Upon my returning as Lead teacher, I felt like I had to "prove myself" that I could still do my job. Although my students LOVED the fact that I used my electrolarynx to talk, in their eyes they thought they had the coolest teacher who sounded like Optimus Prime, the transformer, it was the "adults"-some parents and my administrator, who questioned my ability to continue teaching.
Hello!!! My doctor took out my voicebox not my brain. I am still the same person I was before my surgery. I just talk and breathe differently. I had no problem telling them that or anyone else who questioned my ability. I told them to hold their judgement until after the school year was over and then file your complaints or demote me if you still felt your child did not learn/grow in my classroom.


I successfully learned and mastered esophageal speech about 4 months after returning to teaching. I remember walking into the classroom and talking to my kids using esophageal speech only and not my electrolarynx. My students were sad that "Optimus Prime" was no longer their teacher but smiled because "Miss Linda" was.


At the end of that school year the parents who questioned my ability learned a valuable lesson about "judging" someone because they were "different" and sincerely apologized for their comments.


17 years later I am still the Lead teacher, still using esophageal speech and still educating kids and adults about living as a laryngectomy and how it is ok to be different and have different abilities

.
In the 17 years there has only been about 5 kids and their parents who could not get past my esophageal voice and pulled their child out of my room. What saddens me about that is they didn't give me a fair chance, but I understood.


 


 

Marlene E. Haynes 12-24-96

 

One of my main worries was my job after surgery and treatment. I had been a machinist in a machine shop that made automotive parts. my doctor and pulmonary doctor did not want me back in the solvents and oils/smoke and smog mist, (not good for the breathing) so I was really worried about my future.


Thankfully I had a supervisor who was very caring, and he put me back in an office by myself and we set up the gasoline pump vapor recovery assembly and inspection dept. I worked there in that dept. from 1997 until 2005, at that time the Company sold and that job went away so I became an inspector and packer for the shipping dept. The new owners brought in their own people and all of us old timers that were higher in pay with benefits got shoved out the door to make room for Bosnian's and Serbian's that were brought over. The government supplemented their pay so our Company could hire them much cheaper and train them. Everyone of us that had dedicated years to that company were laid off permanently. I found out I had my third cancer andI applied for Social Security disability, When I won, I retired.

 


 

Richard Crum

I was 45 years old in July of 1988 when I had my laryngectomy and was a professional auctioneer. Needless to say the laryngectomy affected my ability to make a living calling bids. One of the hardest days of my life was 3 weeks after the surgery my 18 year old son sold 9 houses at public auction and I was still only using a Servox.

I learned enough esophageal speech to get by and in Oct 1988, I had the TEP procedure. I was chairman of the Indiana Auctioneers Assn. convention in November 1988 and I would introduce a speaker and blow a seal go up to my hotel room put on a new base plate and introduce the next speaker.

Since I knew values of real estate and personal property and I had many contacts with lawyers I became an appraiser. This is how I have made my living since 1989. I do about 125 real estate and personal property appraisals a year.

In 1992 I became a consultant for Inhealth. This has allowed me to travel all over the US, Canada and Europe. In 1994 I inherited some property and I built a 300 unit self storage facility and my niece is my manager.

Having a laryngectomy is a life changing event but it does not have to be a life ending event even for your work life.

 


 

Loyd Enochs, Evansville, IN - ​December 2009 (back to work full-time February 2012)

 

My laryngectomy surgery did require me to shift my career around a little bit. I started as a computer programmer and moved into teaching computer programming. Once I was able to get back to work, I went back to the programming side of the business.

Since I’ve been back, I have been uniformly well treated by all the people I have worked with at each of the client sites. My coworkers have been curious and some have spoken to me privately about cancer and a relative of theirs, but everyone has been supportive and I am just another face in the crowd after the first day or so.

I have had no problems with the travel involved. Only twice in all my flights have I had to use my tablet computer to communicate with the flight attendants due to noise. The vast majority of the time I have had no issue whatever.

Conference calls can be tricky for anyone and for us it is trickier still. I either ask to be seated next to the microphone or I arrange a private room and call in by myself and use a Bluetooth headset.

Obviously I have to be aware of the climate at the work location. A travel humidifier is a fixture in my luggage for hotel rooms and when I worked in Denver, I also had a small humidifier at my desk that I used occasionally.

The biggest issue I have is trying to keep track of my inventory of supplies and allowing enough lead time when I order to compensate for the shipping delay for the particular city where I am working at the moment!

 


 

John Hendrix - Aug 2011

 

I was truly blessed to work with a company that supported me 100% and allowed me to ease back into my job gradually, and also let me alter how I handle my daily functions to do my job.

After an extended stay (3 months) in Houston TX trying to get my TEP to heal correctly, I was finally released to return home. I arrived home on a Friday and that Monday I was back to work. I do sales for a trucking company and before my operation, did a lot of my job via the phone and traveled to make sales calls with new and existing clients. I also used email to do some of my work. After I returned, I stayed off the phone entirely for quite some time and relied on email. All my old customers were very understanding and gladly worked with me in this fashion. New customers would call, and most were given a quick explanation that I had some surgery done and that I could help them via email. This did not work for all clients but did with most. I eventually worked myself up to talking to my old clients on the phone, and when needed, if a new customer required a quick answer, I would get on the phone with them as well. I am still not 100% comfortable on the phone but am getting more and more used to it. I still get the occasional person who tells me they hope I feel better as we are ending our conversation.

To answer the original question though, my employer bent over backwards to accommodate me, and for that, I am forever grateful. I will never be the smooth talker I once was, but I can still do my job very well if I do say so myself. On the plus side, I have become really adept and proficient at email. One last thing, I have come to realize that it’s not how your voice sounds that’s most important, but the substance of the words that come out of your mouth. God bless you all.

 


 

Len A. Hynds, Ashford, Kent, England - 2004

 

A full life in employment, and retiring at 65 I found so strange,that within a matter of months, and being bored to tears, I was back in harness,firstly as a night manager in a hotel, then as Warehouse Manager of a plastic and paper bag manufacturer.

During that time having open heart surgery with heart valve replacements, a bypass, and a few other odd things done, like a pacemaker, I became officially disabled.


I again retired at 70, but again got bored, and started a Security Company. I again retired, selling the business to a retail TV Security company.

Yet again I started up, selling car parts, to the Freds in Sheds, who do valuable car repair work throughout Kent and Sussex, gaining some 200 customers, who all became friends. I think the reason for my success was that I would never ‘ pull a stroke’ on them, as alas so many vendors would. Like not telling them that with certain car paints where a hardener had to be used, they should only be used wearing an air-fed mask, via a compressor, and the air coming in from outside. Otherwise icocyanate poisoning was a certainty, which is worse than cancer.


In 2004, at the age of 74, I went down with throat cancer but after my operation, continued my work, driving nearly 150 miles a day round my customers through those two beautiful counties, delivering the panels or parts they had ordered. The majority of my customers were fine with my strange voice, but there were two who were horrified
when I offered to show them the stoma, after explaining how it all worked. That came as rather a shock to me, and I realised that so little was known by the general public of us neck breathers.


I eventually finished hard manual work at the age of 75, when I started on my new career at University. I still visit many of those Freds in Sheds at their cottages or farms, at their invitation, being made most welcome by their families.

 

 


 

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

Staff of Speaking Out

 

 

 

 

 

 

 

Recovery – like a rabbit emerging from the burrow.


Rabbits can be shy and quickly scurry deep down into a hidden warren when frightened. Is that why I felt like a rabbit in the early days post laryngectomy? Scared stiff, wanting to hide away in a dark, dank burrow, scared of the light that peered in from the outside world. Pretend I’m not here, I prayed.


But rabbits can also be aggressive and if I was out of sorts and a visitor arrived with a big hearty smile, delighted to see me looking well, I just wanted to box their ears before ducking back into the safety of my bolt-hole!
I’m not married and my brother Conor died many years ago after a traffic accident – happy-go-lucky till the last, sailing out on his motor-bike from a side road into a main road and a passing car. My gentle father, still a great presence in my heart, passed on fourteen years later, so there’s only myself and my mother in my immediate family. My mum suffers from depression and had been hit with a deep bout since my diagnosis. I asked her not to visit at first, sensing that we would only trigger anxiety for one another, and that I should protect myself from that until I had recovered somewhat.


It was calmness I craved, not stimulation of any form. For those first days I asked only a few yin-type women friends to call. I felt they would have the least impact on my frazzled nerves. Most men with their more stimulating yang energies were barred in the first few weeks!


I had a whiteboard and marker so I could communicate. But I often felt speechless internally – like I had been struck dumb with shock. On the few occasions when I had something to say I was impressed to discover the whiteboard gave all the relief that speech does when it comes from the heart. It didn’t matter that it was slow and awkward – it only mattered that I was sincere and met with respect.


I had been given only a 50:50 chance of recovery and was told that the first two weeks were especially critical so the possibility of death was very real. One night during that critical period where there were various post-op complications I remember writing, “If I have to, is it all right to die?” and my friend Margaret replied immediately, “Of course, you have done enough good work in this life”. To my surprise that exchange left me at peace.


But the whiteboard isn’t great for lighter chatter that can cheer you up. Instead, I found that sometimes touch could lift my heart. There were moments when I hugged a friend or touched their arm and found that all my jangling nerviness stilled. What relief – even if it was just a few moments! I felt so grateful. It was new for me to be so reliant on others for security. I have an independent spirit and like to think of myself as self-sufficient. It was humbling but somehow beautiful to find myself so deeply affected by the presence of friends.


One evening, not long after the surgery, a friend offered to massage my hands and feet. I had never experienced the sensations of massage so clearly before. It was gorgeous! Maybe that’s how a rabbit feels when you stroke it? To my amazement I relaxed completely. Although I couldn’t speak or swallow and was hardly able to stand – I felt as happy as I had ever been in my life! It was such an unexpected pleasure. I had another friend who also did massage and one or the other of them would often call while I was in hospital, so I had an hour or so of bliss most days. Again this was new for me – before the operation I was always too busy running around the place to bother organising a massage. Now I lived for them!


Well, that’s not entirely true – but they were a high point. What I lived for, as I tried to explain last month, was the deep insight that comes from mindfulness meditation. It was when I could relax enough to sense a quiet intelligence shimmering gently through all my fears and yearnings – that was the real high point of my day.


And so, quiet friends, gentle touches, and glimpses of a truth beyond the storyline of laryngectomy, enticed the scared stiff rabbit in me out of my dank burrow into the big, bright, scary world outside. WebWhispers is part of that bigger world – thanks for calling me out again and again!


Noirin Sheahan

Dublin, Ireland

 

 

 

 


 

 

A SECOND CHANCE

Within a year of losing my voice I was at University determined that as I had lost my true voice, and not being able to give any emotion in its robotic replacement, that the written word would somehow have to become my method of expression. I studied creative writing and poetry at first and was introduced to the many forms of poetry in countries around the world going back to ancient Greek and Roman times.


I have just come across an old poem I did when studying medieval poetry as practised in French village churches in the 14th century. This was always called a Kyrielle and nearly always composed by the village priest asking God for some divine intervention, usually to save a villager’s life. The priest would sing out the first three lines, and the congregation would join him in singing the last line which frequently was, “Oh, God, be merciful to me.”


Nowadays, seven hundred years later, friends and family say a prayer for us when that operation gets close and knowing that gives us a certain strength and confidence. So I wrote this poem, during that lecture.

A SECOND CHANCE

When told it’s cancer, so I sighed,
“Is my life then to end?” I cried.
There’s no future that I can see.
“OH, GOD, BE MERCIFULTO ME”

The guilt within my troubled breast,
of cigarettes, never confessed.
Too late I suppose for a plea,
“OH, GOD, BE MERCIFUL TO ME”

And now I stand with fearful eyes,
dare not uplift them to the skies.
In case my anguish He should see,
“OH, GOD, BE MERCIFUL TO ME.”

Then a surgeon, and he alone,
gave me a chance to then atone,
and gave me life, and once more free,
“OH, GOD, BE MERCIFUL TO ME.”

And now with voice to speak again,
a second chance of life attain.
My humble thanks will always be,
“GOD HAS BEEN MERCIFUL TO ME.”

 

 

 

 

 

 

 

 


Internet Happenings

 

Are you Ready for a Change?

Microsoft has officially ceased supporting XP as of 8 April 2014. What does this mean? I mostly means that you need to update your operating system or go without Microsoft support of this legacy software.

Windows XP has proved to be very very resilient...even more than Microsoft would have ever predicted. Many users still try to defy the odds and continue to use it...Sort of like betting against the house!

You may have seen the ads offering XP users security in the future use of the operating system for a mere $50 subscription to their security suite. Don’t get caught in this waste of your hard earned bucks...notice it says security and not support...very distinct difference and one that makes the offer not at all what you may want.

Should all of this concern you? If you are a Mac user the answer is no...if you have purchased a new computer in the last 6 years the answer is no. But if you are using a hand-me-down computer or simply have no idea then just go to your Control Panel and select “System” for all you need to know about the operating system on your computer and other information you probably not care about right now.

If by some slim chance you are using XP then you need to decide if you will keep using after having been informed of the risks or you can upgrade you PC to Windows 7 or 8.1. Or you may consider a low cost (relatively) alternative that is Amazon’s #1 seller...a Chromebook...CNET has a plain language review of what you can expect from Google’s entry into the PC world...

http://www.cnet.com/news/google-extends-chrome-os-device-lifespan-by-one-year/


Net Neutrality and What it means to You

Net neutrality is the latest controversial to hit the tech world headlines, but what does it mean and how can it effect you and I. You may not fully realize just what this means to you but read on and learn how our free use of the internet is threatened.

In a nutshell this is the term that is being used to define the use of the internet as being free of any external influences for all to use and enjoy. Another article from CNET (a subsidiary of CBS) lays out the current state of affairs and how the outcome may impact us.

http://www.cnet.com/news/fcc-opens-controversial-net-neutrality-proposal-up-for-debate/

 

Internet Speed

Recently it was disclosed that Netflix had offered to pay Comcast cash for the privileged use and access to its own “high speed” data The higher speed and bandwidth would come from “other” users including competitors, you and I. Our bandwidths would be “throttled" back to slow our speeds to allow for the higher speeds for Netflix.

Do you know your internet speed ad are you getting what you’re paying for? You can check your own internet speed now at PC Pitstop Speed Test :

http://pcpitstop.com/internet/bw.asp?internetspeedtest=

 

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Hope to see you there.

Frank

 

 

 

 

 

 


Where Have All The Flowers Gone?

A Commentary by Jack Henslee

Answers welcome at Feedback@webwhisper.org

 



Back in 1990 my local laryngectomee club requested membership in the IAL. We were accepted and became part of a great international organization of 315 worldwide member clubs dedicated to the total rehabilitation of laryngectomees. I don’t recall the exact number but I believe that 35-40 of the member clubs were from foreign countries with Canada of course leading the way, but even so at least 20 or more different countries were represented.


Back then, in its heyday, the TEP was just getting started and the emphasis was on esophageal speech even though the electro larynx was the prominent method of speech. As it still is today, few SLPs knew much about alaryngeal speech and the IAL Voice Institute was the place to go if you wanted to learn, but even then many if not most areas were greatly underserved as far a laryngectomee rehab was concerned.


Most laryngectomees received much of the information they needed for rehabilitation, and in many cases speech therapy, through a local club because that was the only source available in their area. From out of this need arose the formation of the many “clubs” listed above plus countless other groups and individuals that silently worked in the shadows. These people were all volunteer laryngectomees, SLPs, caregivers, friends and family members that cared about the need to help new laryngectomees, and in many, many cases they represented those that simply wanted to payback the support, hope and encouragement they had received in their time of need. From what had started out as isolated grass root support systems arose the International Association of Laryngectomees, the Congress of European Laryngectomees (CEL), the Asian Federation of Laryngectomees, Nordic Congress of Laryngectomees, many other associations in countries throughout the world, and a newcomer called WebWhispers.


From this “system” bloomed many dedicated leaders, hard workers, loving and caring people that represented the best that humanity has to offer. They were there in the spirit of just helping others because the need was there or it was a way for them to return what they had received from a once total stranger or a faceless source. Being a laryngectomee wasn’t easy but these flowers of hope and promise certainly made it a lot easier.


Then something happened! Club attendance started to drop, clubs started to fold, and IAL membership declined. From all over the world the same thing was happening. Back in 2005-2006 the IAL and the CEL tried to partner and figure out why this was happening but all that was decided was that they didn’t know, but whatever the cause it appeared to be universal. Since then the CEL held its last conference in 2006 in Croatia which I attended. That conference which supposedly represented most of Europe only had about 100 in attendance and was represented by maybe only 7-8 of the 20-30 member countries.


The Nordic conference which is comprised of Scandinavian countries only meets every 4 years and I don’t believe they still conduct a conference. In fact to the best of my knowledge no other European countries have a national organization that conducts an annual conference and their local clubs, limited to begin with, were dropping just as the IAL’s clubs were.


Latin America has no national organizations that I’m aware of other than Costa Rica. Puerto Rica may be still active. The Asian Federation still functions to some extent but their mission is to teach and promote esophageal speech which they are very good at. They basically send “missions” to various countries and conduct intense esophageal clinics that last from 2-4 weeks. They also hold a conference every 2 yrs. (in the Philippines this yr.) but it is totally geared toward the medical and speech professions. Others may attend but they are not specifically invited or involved in the curriculum.

The IAL has dropped from a high of about 315 member clubs to probably less than 100 now. It’s hard to know because they no longer publish a club directory or post one on their website. Their Voice Institute is still the premier alarngeal speech teaching entity in the world but that conference which is combined with the Annual Meeting of the Delegates has declined in attendance by about 50% in the past 5-6 yrs. Plus, based on the information sent out recently to the “clubs” every officer position is open for election this year plus 6 of the 8 director positions. They have no candidate for secretary and haven’t had one for a year now; there are 3 director chairs open with no candidates. The 3 nominees for the other positions are non- laryngectomees; not necessarily a bad thing but a little disheartening that no one else seems interested.


There are numerous theories about the causes, all of which could have some validity but in my mind none are the determining factor. The TEP is the # 1 candidate with the argument being that people can speak right away and don’t really need a support system anymore. Plus, there may not be the desire to pay back what you received, since all you have received is a puncture and prosthesis and may not have even seen another laryngectomee. Changing attitudes toward social organizations may be a factor as people are so much more individual and self-sustaining now and many shy away from organizations. Then there is the impact that the internet, and more specifically WebWhispers, has had on the need for local clubs. I don’t think WW can fully replace the value of personal face to face you get from a support group, but I understand that some people think that is the case.


I have certainly been aware of all of this for some time but held out hope that things would improve. My “Voices Restored Project” in Costa Rica had confirmed that and renewed my faith in humanity and its capacity for compassion. In brief, we delivered over 70 speech aids to Costa Rica and eventually gave speech to over 100 people that might not have ever received it. We conducted 2 speech clinics over a 2 year period and trained people how to use an electro larynx, trained speech therapists, nurses, and about 40 SLP students in alaryngeal speech and rehabilitation. We helped them establish ALACORI, the first ever laryngectomee association in Costa Rica, gave them educational materials, supplies, and filmed a documentary that highlighted their success so they and other Latin American countries could bring awareness to their situation. All of this was free of charge with nothing asked in return except a promise that they would continue to help others as they had been helped. They promised, they were sincere, and they delivered. But then, as with everywhere else, it began to fall apart and now after 4 years they are barely existent with just a few members doing tobacco education and new laryngectomee visitations. They no longer meet regularly because low attendance and political infighting have driven away the primary leaders as have medical problems and death. It is perplexing because they don’t have TEP, they don’t have the internet access that we do for information in their language, and they certainly don’t rely on WebWhispers. They are still much more religious, family and society oriented than economically empowered countries but yet they still face the same failures.


The entire issue saddens me and I simply don’t accept the fact that maybe we have done our job so well that we are no longer needed. We still need leaders; we need support groups, awareness, personal touch, as well as information via social media. We need people to hold hands and give encouragement, to write the stories, answer the questions, attend or create support groups, serve on committees and boards that support our cause, and to support those that already do these things

.
Most of us feel we have been given a new life. Please take the time to ask yourself what can I do to help others as I have been helped? Since you are reading this you have probably been helped by someone. Don’t wake up someday and wonder, “Where Have All The Flowers Gone?”

 

 

 

 

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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           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.
 
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