May 2006


 

 

Name Of Column Author Title Article Type
Musings From The President Murray Allan Skype Anywhere News & Events
VoicePoints Dr. Jeff Searl P1 Neck Tissue Changes Education-Med
News, Views, & Plain Talk Pat Sanders Start Your Own Blog Experiences
Between Friends Donna McGray New Mortality Experiences
Tidbits Of Interest Misc Short Stories From WW Experiences
Bits, Buts, & Bytes Dutch Computer Tips Experiences
Welcome New Members Listing Welcome News & Events

 

 

                Murray's Mumbles ... Musings from the President
 
                           Skype Your Aunt In Australia
 
How about Skyping your Uncle Fritz in Bavaria?  Check on the grandkids in Ohio? Did anyone Skype you, today?

What in heaven's name is this man talking about?
 
No - I haven't lost it completely but just wanted to let you know that you can talk computer to computer anywhere in the world for FREE.  For those that are not aware of this relatively new program it is called by the "techies" VoIP (Voice over Internet Protocol).  You can download the program absolutely free from www.skype.com and once you have emailed a relative or friend to download the program you can talk all day and night.  I talk with our VP - Web Information, Pat Sanders, in Birmingham, AL from my home here in Vancouver all the time — also my friend and fellow member, Gary Miner, in NC. The funny thing about it is that your computer rings and not your phone.
 
Recently June and I were in Mexico and we had our laptop with us.  After downloading Skype I was able to call home and retrieve our messages, talk with the folks that were looking afterour BIG orange cat Rusty and generally use my computer as a phone.  The clarity is great and did I mention that it's FREE!

But there is another option.  You can call people from your computer to their telephone and they don't have to even have a computer! They may not even know the call is computer generated. This option will cost a small amount of money (about 2 cents a minute) when you are calling a telephone anywhere in the world.  You can buy credits to use as you want in 10 Euro ($10 USD) increments. There are many other features such as conference calling (up to 5 parties), call forwarding, file sending, and a complete history of all your calls sent and received plus it lists the ones you missed.  If you don't want to talk you can type messages back and forth instead.
 
The only thing you will need is a microphone and you can use your regular speakers to hear the other person.  If you don't want the noise you can buy a combination headset with a microphone attached for about $10.00.
 
My Skype name is "murraya1934" so give me a call after you download.  The best thing since sliced bread!!!
 
A hearty welcome to all our new members!  We are all here to help one another without exception.
 
Take care and stay well.
 
Murray Allan

[ Editors' Note:  The following is presented courtesy of a recent Associated Press Report:

STOCKHOLM, Sweden (April 28, 2006) - Internet telephony provider Skype announced Friday it now has more than 100 million registered users worldwide.  Skype, which was bought last year for $2.6 billion by online auctioneer eBay Inc., said it has nearly doubled in size from September 2005 when 54 million people were using the service.  Founded by the creators of Kazaa, the free music-sharing program that riled the music business, Skype gives away software that lets people talk for free from computer to computer, or pay a small fee to place and receive calls from regular phones.  Internet phone providers like Skype are creating upheaval in the telecommunications industry and putting pressure on traditional operators.  Their Voice over Internet Protocol technology is cheaper and more efficient than traditional circuit-switched phone systems, and VoIP usage figures to become more prevalent as broadband penetration deepens. ]


 VoicePoints [ © 2006 Dr. Jeff Searl ]
  
  coordinated by  Dr. Jeff Searl, Associate Professor ( jsearl@kumc.edu )
                               Hearing and Speech Department, The University of Kansas Medical Center
                               MS3039, 3901 Rainbow Blvd., Kansas City, KS 66160

Neck Tissues that Change Over Time
Jeff Searl, Ph.D., CCC-SLP
The University of Kansas Medical Center
Kansas City, KS

 
            Necks. Prior to a laryngectomy, most folks probably don't give much thought to their own neck other than maybe deciding which necklace looks best on it or which size collar to look for when buying a new shirt. Necks take on a whole new level of interest for a person following total laryngectomy. What's the color of the skin and has that been changing over the past few weeks, how's the stoma size doing this month, do I have some dry crusty mucous or maybe even a plug that has to be dealt with, is that scar line deepening, changing, bulging, and so on? This month we are talking about necks after laryngectomy and how they might shift and change over time. Sometimes the tissue changes will impact communication; sometimes they don't. In either case, a careful eye on the neck is a must because sometimes the changes are an indicator of serious issues.
 
            Below I touch briefly on a few of the more common neck changes. This is not an all inclusive list and the medical doctors are the primary diagnosticians for evaluating tissue changes in the neck. But the SLP can play a very important role in getting laryngectomees back to their doctor should some type of neck tissue change occur. In a follow-up next month, I want to tell you about a patient of mine who showed some unique tissue changes at an unusual time post-surgery. I think her case highlights the need for vigilance and also the need for flexibility in alaryngeal speech training if speech is affected by the neck changes.
 
            Most laryngectomees become fairly interested in the status of their own neck regardless of the type of speech that they use. Discussions with folks over the years have helped me learn that each person develops their own routine in dealing with their stoma and neck. This past week, one gentleman described his morning "neck and stoma" activities for me: wake up, shower with the stoma protected, soap and water scrub around the stoma while in the shower, thorough drying when out of the shower, wipe the neck with a skin prep swab, pat it dry with lint free cloth, swab on a thin coat of skin adhesive, let it dry, put on another coat of adhesive, let it dry, firmly press on a housing unit for a heat moisture exchange device (HME), pop the device in, check the seal periodically throughout the day, deal with any leaks around the housing unit if they occur. Sometimes he needs to pick out little globs of dry mucous in the morning before starting this routine; sometimes he needs to atomize a bit of saline solution into the trachea to help loosen dry or crusty mucous. Even when not using a housing unit, HME, hands-free valve, or some type of laryngectomy tube, most laryngectomees pay attention to their neck on a very regular basis. They notice if the neck is tender when the artificial larynx is pressed against it; they pay attention to the clothes they wear and how they might (or might not) cover the upper chest and neck.
 
            Speech language pathologists (SLP) who work with laryngectomees will never have as intimate knowledge of their patient's neck as the patient does. However, the SLP must make a concerted effort to pay very careful attention to each patient's neck at every visit in order to help head off potential problems and identify trouble at the earliest time possible. In reality, given the relatively long time periods between face-to-face contacts of the patient and SLP, the patient must be relied upon to quickly identify if there are any changes in neck tissue shape, color, or sensation that might signal trouble. The doctor plays a primary role in looking for neck changes at the routine follow-up visits and educating the patient about keeping an eye out for such changes in between visits. However, in my experience, the SLP generally has more frequent visits with the laryngectomee patient in the first year (and often times for the first several years). As such, it may fall to the SLP to make sure that the patient looks and pays attention to their own neck, and that they know to contact the SLP or doctor if anything changes.
 
            Most changes in neck tissue shape, size, color, and sensation happen in the immediate post-surgical time period and for the 3-6 months thereafter, particularly if the patient is undergoing post-operative radiation therapy. For example, SLPs seem to be fairly aware of the expected changes in the stiffness of the neck, discoloration of the skin (to a dark brown or red), and acute swelling that often are associated with radiation therapy. At the early time period during post-operative radiation there are several folks who are in a position to evaluate neck tissue changes including the patient, SLP, oncologist, ENT, and a host of nurses that work side-by-side with the physicians. Because there are so many eyes on the neck of the laryngectomee at that time, the likelihood of detecting serious neck tissue changes or problems in a timely fashion seems high (although no ones vigilance should wane just because others are there to pick up the slack!).
 
            Stoma size changes "usually shrinking rather than enlarging " are one of the more common neck changes that happen. We expect some shrinkage in stoma size in the immediate weeks after the surgery. The surgeon often has a goal of creating a stoma that is roughly the diameter of a quarter. To get that, they generally create a somewhat larger stoma, knowing that it will shrink a bit over time. However, predicting the extent of shrinkage is not an exact science. For some folks, the shrinkage is great enough that it impacts breathing. For a tracheoesophageal (TE) speaker, a very small stoma can also make prosthesis insertion, cleaning, and removal difficult. The laryngectomee is often the one to identify the shrinking stoma as a problem but that is not always true. The SLP should be making note of stoma diameter size routinely during therapy visits, asking the patient about their impressions of the stoma size, and soliciting information from the patient that might indicate an airway that is getting too small (e.g., short of breath at rest or with limited exertion, trouble breathing in the morning when there might be more dry mucous in the airway, etc.). Once the stoma size reaches an unacceptably small lower limit, the treatment usually falls to the ENT. Surgical reconstruction is a possibility (though some might shrink again!); wearing something in the trachea is also a possibility. A laryngectomy tube, a "button", or even a tracheotomy tube might be used regularly to help hold the stoma to an adequate size. All parties involved (laryngectomee, SLP, ENT) are usually keyed in to looking at stoma size and so most problems get picked up and can be managed in a reasonable time frame.
 
            Granuloma tissue might develop in or around the stoma. This is nodular, firm tissue that usually develops at a site of irritation and represents an inflammatory response from the body. The most common site to see this in a laryngectomee is at the TE fistula site when there is an ill-fitting prosthesis that is irritating the tissue in the region. Granuloma tissue might also develop around or on the inner rim of the stoma itself as a result of a various irritants (a laryngectomy tube, stoma "button", forceful digital coverage of the stoma during TE voice, etc.). This tissue can often be easily treated by cauterizing it with silver-nitrate in the ENT office. In more extreme cases, it may have to be excised. For certain individuals this is a recurring problem that can be difficult to eliminate completely even though it seems that all the possible irritants in the region are managed properly.
 
            There are a number of other changes that SLPs might see with some regularity. The SLP should pay particular attention to the scar/suture lines in the neck region. Sometimes the changes are minor such as a bit of excess scar tissue or perhaps some tightening or shortening of a scar. In some laryngectomees, keratosis develops along scar lines. Keratosis is bulbous and excessive scar tissue development that usually doesn't have a functional impact that would necessitate aggressive treatment (keratosis occurs more often in African Americans). Usually the ramifications of this are not major, but it could preclude placement of an artificial larynx in the region or make it difficult to secure an HME or hands free valve housing unit if the scar tissue is in a location immediately around the stoma.
 
            A more serious problem involving suture and scar lines occurs if these weaken, causing a split in the tissue, an open wound or a passageway that connects from the throat on the inside all the way through the neck to the outside. This is called a fistula — and not one that is desired (as is a surgically created fistula, sometimes called a puncture, for TE speech!). This might start as just a small break but could rapidly deepen or lengthen creating a problem that can be difficult to manage. Sometimes a small tract or passageway develops that goes from the throat all the way through the neck with an opening to the outside usually somewhere along a suture line. This passageway is referred to as a transcutaneous fistula. Surgery is often needed to address the problem. When such tracts occur, the doctors try to seek out the cause of the tract development. It might be tissue breakdown resulting from radiation therapy or perhaps another condition that is not conducive to good wound healing (e.g., diabetes). At other times it might be unusual pressures or tensions somewhere in the region that are exerting a push or pull on the suture. Fortunately, such splits/fistulae are not particularly common. Regardless, they can be very difficult to treat (surgery is often needed) and require immediate attention. For that reason, the SLP and patient need to serve as watchful eyes to detect any problem as early as possible. The reason for the tissue breakdown needs to be identified with the help of the medical team with the ENT in the lead. Sometimes it can be traced to poor healing as a result of radiation in the region, which is not necessarily conducive to good tissue healing, diabetes, which can promote poor healing as well, or other causes of reduced blood supply or tissue death in the area of the surgery. Understanding the cause can ultimately help the physicians figure out how to either manage the problem or decrease the likelihood of it recurring after repairing the wound.
 
            There is another fistula-related problem that SLPs are likely to see at some point if their caseload includes TE speakers. On rare occasions, the fistula tract itself may shift its position. Sometimes the opening of the fistula on the tracheal wall will not move, but the trajectory of the tract through the common wall between the trachea and esophagus shifts directions or becomes angled. This usually becomes apparent when trying to re-insert a TE prosthesis. The insertion may be difficult and may only be successfully completed once the clinician or patient finds just the right angle when applying pressure during the insertion process. Some subtle shifts in the fistula tract are expected, particularly in the first several weeks after the puncture. This presumably relates to healing in the region and maturation of sutures placing some tension on the tissues making up the tract. In other more rare instances, the tracheal opening of the TE tract can migrate noticeably. This may not be a problem as long as the puncture opening stays within the stoma and is in a location that is accessible to the therapist or patient for care and changing of the prosthesis. However, some tract openings can migrate upward so far that they are now on the edge of the stoma or above the stoma (that is, opening out on the neck rather than opening into the stoma). This essentially precludes use of the fistula tract for voicing purposes because occluding the stoma no longer results in air being directed through the puncture site. The fistula tract opening also could move down the back wall of the trachea as well. If the migration downward is so great that the opening is no longer visible or accessible, then we have a problem. Such was the case for MJ, a patient, who had a rather remarkable change in her neck over a two year period that forced all involved to be persistent and creative.
 
            These are some of the neck tissue changes that the SLP might play a role in identifying along with the help of the patient and ENT. The SLP tends to see their laryngectomee patients on a fairly regular basis and often more frequently than the patient returns to see the ENT. As such, the SLP can play a key role in making observations of the neck so that problems can be identified in a timely manner. And the SLP should play a key role in keeping the laryngectomee vigilant by telling them not only to pay attention to their neck (which they almost always seem to do without prompting), but also telling them to report any changes to the SLP or ENT when they first notice it.
 
            In the next edition, I will share the story of MJ, a patient of mine who taught me several things about neck tissue changes. Her story is unique, at least in my own experience. She went through a lot and forced me and the ENT to have to think and plan carefully to get her communicating effectively. More to come when we pick up next month with MJ's story.


Spoken of in legend... it's...

 THE REALLY BIG BUTTON THAT DOESN'T DO ANYTHING  

Welcome to the most unusual artifact we ever discovered on the Superhighway de la Informatique:
the really big button that doesn't do anything.  Developed in early '94, labeled as the Mystery Spot
of the Internet, thousands flock to this button every day, pushing it, attempting to get it to do
something; all in vain.

Many over the years have pondered the puzzling problem of the pointless button... for example:

"I just don't get it," says John Andrew William Thoroughgood of Monkville, RI. "I mean, it's a
button, sorta like the other piccy-links on the web, but I push it and it doesn't do anything. It's
SUPPOSED to take me somewhere cool on the web or give me a sound file or an MPEG. But
it doesn't. I don't get it! WHY GOD WHY?

Gregory L. Snead shouts to a large crowd of onlookers, "You are all wrong!  The button does
what all buttons of its kind do: allow itself to be pushed.  What to do you expect?  Can it be
held responsible for what *doesn't* happen once it is pressed?  I think not!  Perhaps the world
would be a better place if individuals were more like the button. Hail to the button!"

Daniel Dylan muses, "I don't see what the big deal is...I mean I pushed it, and it worked for me."

Ryan Grant notes, "I think it's really great. Completely underrated.  I clicked on it about 50
times, and I still haven't had enough!"
 


 News, Views, & Plain Talk
  
                           by Pat Wertz Sanders, WebWhispers VP - Web Information
                                           

Now that you know what one is—(see March, 2006 WotW)

 START YOUR OWN BLOG

Many of us do not have the ability to start our own web site but would love to have our own little corner on the Internet in which to express our opinions, share our thoughts, and maybe even blow off steam at politicians.  You might have a hobby that you would love to share with others: woodworking, quilting, building models or collecting dolls.

Nice thing about a web-log, known as a BLOG, is the simplicity.  You may write as often as you wish, choose your subject of the day or week, give out your blog address as you would your home address or telephone number.  We would list your blog URL (Internet address) in our WW member roster just as we have always listed member web sites.

Let's start with one of the places you can go to start your own blog free, and it has full instructions on how to start one. http://www.blogger.com/start  This has 1-2-3 instructions on how to set up.  They describe blogs as follows:

A personal diary.  A daily pulpit.  A collaborative space.  A political soapbox.  A breaking-news outlet.  A collection of links.  Your own private thoughts.  Memos to the world. Your blog is whatever you want it to be.  There are millions of them, in all shapes and sizes, and there are no real rules.  In simple terms, a blog is a web site, where you write stuff on an ongoing basis.  New items show up at the top, so your visitors can read what's new.  Then they comment on it or link to it or email you.  Or not.  Take their quick tour to get the idea.

Google has a blogsearch  http://blogsearch.google.com/ but if you want to register your own blog, try the Globe of Blogs http://www.globeofblogs.com/?x=faq

It is sort of like the Internet's telephone directory but broken down in more ways.  I went there to see how easy it would be to find a point of interest.  You can browse by name, title, topic, location and more.  http://www.globeofblogs.com/?x=topic

I chose "Topic" and because I am always researching health issues, I selected that from a list that looks like this:

Health and Fitness: 3030 weblogs found.
Hobbies: 9835 weblogs found.
Home and Garden: 739 weblogs found.
Lifestyle Choices and Subcultures: 13442 weblogs found.

The next list gave me choices such as:

Cancer: 110 weblogs found.
Deafness: 24 weblogs found.
Depression: 455 weblogs found.
Disabilities: 141 weblogs found.

Selecting "Cancer", I was presented with a list of 5 pages of blogs in alphabetical order.  I never got beyond the first page before finding one I wanted to check out.

Cancer Giggles
An idiots guide to living with and dying from cancer
Location: United Kingdom

What a great choice.  I have not moved for an hour as I have been so fascinated with this blog.  Picked out of thin air, this man can put a smile on your face even as you read the horrifying news he faced.  The link here is to the first of his writings and the excerpt below is one small section of his reaction to having cancer and all that it can mean.

http://www.cancergiggles.blog-city.com/live_with_cancer_1.htm

RADIO AND CHEMO

So the docs announce that to make you feel better, you are going to be nuked.  For good measure they intend to fill you full of some seriously nasty chemicals which you are going to volunteer to carry around with you in a little bottle which will be attached to you via a tube.  To make it easy they will put a plug in your chest with a tube which goes up to your head so the chemo can be with you 24/7.  Oh and would you mind doing it for say, 5 months?  It doesn't get much better than that.  Now here is where there's a real doozy of a question.  Do you accept their very attractive offer or not.  Hmm.  Hair may fall out, bits may fall off, you'll be dead tired and sleep all the time plus you may get a bit ratty.  But surely there must be a down side.  Yep you'll probably lose a load of weight.  No brainer!  Now wait for this.  No bits fell off.  Often felt pretty tired but not enough to stop me from going to my local bar/restaurant, using the internet and generally enjoying life.  My "Borg implant" as my daughter calls it (the place where the chemo is delivered into my system) was no problem.  Did my hair fall out?  I started to go grey about 30 years ago but after 3 months my wife suddenly started laughing and eventually told me I looked like Mr Spock.  My hair had gone thick and turned almost jet black!  No doubt you will find it impossible to believe that someone with such a sunny disposition as mine could become irritable.  Strangely enough my wife disagreed.  Perhaps just a couple of times I .........
(taken from Cancer Giggles)

That's a good note on which to end this month's column. Expressing yourself does not get much better than that!


 
 BETWEEN FRIENDS          Donna McGary
                                     "That which does not kill us makes us stronger"
 


New Mortality
(with apologies to Katherine Anne Porter)


I have a 96 year old grandmother who appears to be ageless.  She has had numerous serious health problems over the years and indeed has said that she has been living on borrowed time for decades.  Looking back, that was just a tad disingenuous. The doctors say now there is nothing else they can do for her; her heart is plum wore out - but you couldn't prove that by me!  She is getting hospice care in a nursing home now and I swear she is enjoying all the attention she is getting  from everyone so much that she has a new lease on life—we are WAY past the nine lives mark.
 
I always feel young around my grandmother, because she never feels old.  She was very young when she had my mother (compared to my paternal grandmother) so she always seemed more youthful and vigorous compared to Nana, my father's mother.  Since Nana lived to be 103, I guess she was pretty vigorous in her own right, but she always seemed old to me.  Her mother, my great-grandmother, lived to 102.  Even my 30 year old son- her great-great grandson remembers her.  Is it any wonder I wanted to be a gerontologist?

I see my folks, they're getting old, I watch their bodies change...
I know they see the same in me, And it makes us both feel strange...
No matter how you tell yourself, it's what we all go through...
Those eyes are pretty hard to take when they're staring back at you.
Scared you'll run out of time.
~Bonnie Raitt / Nick of Time~

In an ironic twist, it was my 81 year old father's remarkable recovery from triple bypass surgery that most recently made me confront my own mortality.  Not my own cancer and its devastating consequences from treatment.  It was watching Dad as he took his first tentative steps down the hospital corridor.  Literally, watching his back as he clutched that ubiquitous pillow, and teasing him that I was making sure his skinny old ass wasn't exposed.  Encouraging him as we rounded the corridor by joking that if he were running the Boston Marathon, this last leg would be "Heartbreak Hill".  It was in that moment of his vulnerability - seeing that triangular section of skin beneath his neck where his gown didn't quite cover his shoulders - that my father got old.   And instantly, so did I. 
 
A diagnosis of cancer is not the death sentence it used to be, but it is still very scary.  For pretty much everyone it is a moment of unwanted face-time with our mortality.  Most of you had the shock of the diagnosis immediately compounded by a devastating surgery followed by a long recovery.  Because of the nature of my type of cancer, I was given an option of radiation, with the prospect of surgery later as a "salvage operation".  That was six years ago and apparently today, more and more doctors are opting for that approach even for their patients with more aggressive squamous cell cancers. New radiation techniques are being developed constantly and today are much more precise and powerful than even just a few years ago.  Patients whose cancer responds well to these new modalities and who tolerate the treatments well will not need laryngectomies and may retain at least some use of their vocal cords and natural airway.  I am in that small percentage of persons who didn't tolerate radiation well, so my "face-time with my own mortality" was short and incremental.  I rarely thought I was going to die, at least not anytime soon!  But I WAS worried about becoming an invalid as chronic coughing and breathing problems relentlessly dogged me.
 
Even turning 50 wasn't TOO bad.  I was celebrating my third anniversary since the diagnosis and was cancer-free.  It was, as it turns out, the last time I would have any use of my vocal cords (and even then only due to massive amounts of prednisone).
 
Sometimes it is a good thing we don't know the future.  Other than feeling fat and frumpy instead of fabulous and foxy (something a lot of  women feel on their 50th - regardless of cancer, I suspect), I thought, "I'm doing pretty darn good."
 
Someone once said "It's not the dying that scares me, it's getting there."  Intellectually I find gerontology fascinating because I really think of aging and death as the final frontier...and one we are so uncomfortable discussing in our society.   I am still fascinated, but it is a much scarier voyage when you realize that you and everyone you love is on that starship.  But we are on it together and as I watch my folks get older right along with me and my son, I begin to appreciate the sweet symmetry of passing  the baton from care-giver to receiver.

   Tidbits of Interest
                                                                                  
Contributions from Members
 

   FROM THE WEBW LIST

 

Communicating With One's Dog

Question:  Is there some way I can increase the Frequency of a Servox so that dogs can hear me?

Answers:

"My experience is that if you carry around a piece of fresh sirloin, the dogs never lose track of you" ... Laurence Moss

"My dogs pay attention when I clap my hands. Once I have their attention, practically anything works to get them to listen. And practically nothing works to get them to do what I want. Same as before surgery!" ... Paul Sampson

"Be aware that our dogs use our new voice as an excuse ... pretending they don't understand, when they just don't want to obey a command. Come to think of  it, my wife does the same thing!" ... Joe in Dallas

TEP Compared To EL

Comments:

"One thing that's different using my TEP voice as compared to the EL is when my girlfriend says those words that NO MAN WANTS TO HEAR, "We Gotta Talk", ...  I used to write down on paper that I don't know where my machine is.  With a TEP I can't use that as an excuse anymore 'cause, even if I don't have my Hands Free inserted, I can't say I don't know where my finger is!" ... Doug Peterson

Getting A Check-up

Comment:
"I went today for my pneumonia follow-up visit. The Dr. put the stethoscope on me and asked if I was feeling wheezy.  And I said "No way man, that's George Jefferson's woman!" ... Kevin J. Riley

Compiled by Diane Davis

 THOUGHTS TO PONDER 

      "Hope is seldom found in the things we can see; it is the sweet fragrance of grace."
       Sent in by Graham Latemore, Winfield, Queensland, Australia

     
"Knowledge helps understanding and gives you something to work with to improve your situation."
       Sent in by Pat Sanders, Birmingham, AL

     "When the door of happiness closes, another opens, but often times we look so long at the closed door
       that we don't see the one which has been opened for us."
      
Unknown

     "Becoming a laryngectomee is a learning experience with very few teachers."
      
Information Library Index

 

 LEAKING INDWELLING VALVE? - MY EXPERIENCE WITH A LIFE-SAVING PLUG FROM PROVOX.

At the annual IAL-meeting in Boston in September 2005,  I was shown a plug to occlude and seal an indwelling Provox valve.  I was happy to receive a free sample and brought it with me to my winter place in Brazil, which is located in a rather remote interior area but with an ideal climate for laryngectomees.  I had put in a new prosthesis just before I left Norway and brought a spare valve with me, too, in case it should be necessary to change before returning.

After three weeks a progressive leakage appeared, in spite of daily rinsing and intake of yoghurt every day.  I found the Provox-plug and inserted it. Leakage stopped immediately but I had to talk with an electrolarynx since no air would go through the prosthesis.  The local doctor had no experience with such valves.  The nearest ENT who had the experience, a doctor recommended to me, was in Buenos Aires, where I could go to have my valve changed.   After two weeks with my valve occluded and the leak stopped, I arrived in Buenos Aires and had my indwelling TEP changed there without any problem (at the German Hospital).

Leaking valves are the most common complication with indwelling prostheses.  A heavy leakage has always to be regarded as a life-threatening condition in remote areas where you face a long time lag before the TEP can be changed.  The plug, which is very efficient and easy to put into the TEP-tube, may therefore be regarded as a life-saving device when you live or travel in such areas.  I think it would be a good idea to supply every new package of Provox-valves with a plug to prevent bronchitis or pneumonia from possible leakage, in case it takes long time to get to a place to have the valve changed.

Lorents Gran, Norway

PARTNERSHIP FOR PRESCRIPTION ASSISTANCE PROGRAM
 
Many of you may have seen the various advertisements for this program, The Partnership for Prescription Assistance, normally headlined by entertainment personality Montel Williams.  Below are some details on this program that some members may find of interest:
 
The Partnership for Prescription Assistance brings together America's pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that's right for them. Many will get them free or nearly free. Among the organizations collaborating on this program are the American Academy of Family Physicians, the American Autoimmune Related Diseases Association, the Lupus Foundation of America, the NAACP, the National Alliance for Hispanic Health and the National Medical Association. The Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies.
 
Many people have difficulty affording healthcare, including prescription medicines. A number of patient assistance programs provide help to patients who lack prescription drug coverage and earn less than 200% of the federal poverty level (approximately $19,000 for an individual or $32,000 for a family of three)  Recent estimates indicate that as many as 23 million people in the United States make less than this level and have no health insurance.

In order to find out what patient assistance programs you may qualify for, all you have to do is answer a few short eligibility questions. Their web site will help supply you with the information you need to get involved in a program and even allow you to download applications online. You can then follow the instructions on the application to apply.
 
The web site is at:  https://www.pparx.org/Intro.php
 
Hope this is of assistance to some.   Dutch Helms, El Lago, TX


                          Dutch's Bits, Buts, & Bytes
 
(1)  Red X appears instead of image?

Question:  "Sometimes in my Emails or websites, the images do not appear, but a little red X shows up. Can you tell me please how to correct this?"

Answer:  Ah yes, another case of software saving us from ourselves... There are a bunch of reasons why you might see the dreaded "Red X" instead of an image while viewing a web page with Internet Explorer or an email with Outlook.

Here are some possible reasons why the Red X may appear, and suggested fixes for each:Problem: The "Show Pictures" setting has been turned off in Internet Explorer.
Solution: In Internet Explorer's Tools menu, click Internet Options, then click the Advanced tab.  Make sure the Show Pictures check box is selected under Multimedia, and click OK. Problem: Your anti-virus or firewall is a little too uppity.  Check to see if your anti-virus or firewall software has a privacy setting to "disable web bugs".
Solution: Uncheck or turn it off.  (The term "web bug" is a misnomer.  They are really just harmless tiny images on a web page or email, sometimes used for tracking purposes.)Problem: Your Internet Explorer security settings are set too high, preventing you from accessing the web site which hosts the image.
Solution: Reset to the default security settings.  In Internet Explorer, click on Tools -> Internet Options -> Security -> Default Level.Problem: You've installed the Windows XP/SP2 updates and you're being bitten by the "Block images and other external content in HTML e-mail" security option.  This is automatically turned ON in Outlook Express after you install Windows XP/SP2.
Solution: Click on Tools -> Options -> Security.  Then UNCHECK the "Block images and other external content" check box, and click OK.Problem: You are the SENDER and others are complaining that they can't see images in emails you sent.
Solution: In Outlook Express, Click Tools -> Options -> Send.  Under Mail Sending Format, select HTML, then press the HTML Settings button.  Make sure the "Send pictures with messages" box is checked.Problem: The image is hosted on a website that's busy, temporarily offline or defunct.  Or the image file on the website might have been renamed or deleted.
Solution: Try again later or ask the sender to send it as an attachment instead of an inline image.

Problem: The image is hosted on a website, and you're not online.
Solution: Make sure your internet connection is active and try again.

(2) Need Help With Divorce!

Question: I have recently divorced and would like to change my name within Microsoft Office.  I am uncomfortable when I go into Word and my old name pops up!  Can you help me?

Answer:  When you first installed Microsoft Office, there was a set of screens where you filled in your name and other information.  Obviously, now that you are divorced, you don't want your software reminding you of the life you left behind.  Uninstalling and reinstalling the program would do the trick, but rather than go through all that trouble you might just simply open Word and select Tools then Options.  Select the User Information tab.  You will see all the old information.  It's simple to update.  Happy new life!!

(3) Default Media Player? 

Question:  
Can you tell me how to set Windows Media Player as my default player?

Answer:  With all of the different media players, it gets rather annoying when after you install one it takes over as the default for your various media files.  Most of the time, when you install the program, you are given the option of telling it which files it should handle.  This is helpful when you install, but when and if you decide to change your mind and want another program to be used you have to jump through a few hoops.

To make Windows Media Player the default program for your media files, click Tools then Options and select the File Types tab.  Here you can check all of the things you want Windows Media Player to handle.

Keep in mind that media files, like any other files, can be reassociated at any time.  For example, if you decide you want to associate MP3 files with another program at some point you can simply locate an MP3 file, hold the Shift key and right-click the file.  At this point a menu will appear and you can select Open With and then choose the application you want to use to play MP3 files.  Check the box next to "Always use the select program to open this kind of file" and the next time you double click an MP3 file it will open that program.

(4) Dealing with "PowerPoint" files.

Question:  I have recently been getting more and more PPS file attachments with Emails but I am unable to open these attachments.  When I try I get "application not found".  I have never had a problem opening any other file attachments.  Do you have any suggestions as to what to do to enable opening "PPS" files?

Answer:   PPS files are documents created by Microsoft PowerPoint.  You probably don't have PowerPoint installed on your computer and that is why you are having trouble opening these files.  When sending someone a computer file you have to take into consideration the program used to create it and how common it is.  Obviously files such as JPG and GIF images are pretty common and most computers are equipped to be able to at least view them.  Other files such as PowerPoint or Microsoft Project files or even certain types of animation or architecture documents are more specialized.  Not everyone has Microsoft PowerPoint installed on their computer and those who may wish to share PowerPoint files should take this into consideration when sending them around.  The good news is that you need not plunk down $90+ to purchase a copy just to view these files. You can download PowerPoint Viewer 2003 for free from Microsoft.  Once this is installed you will be able to view all the PowerPoint files that are sent your way.

   ListServ "Flame Warriors"   


                                                                                Terms of Importance
flame
1. n.   A hostile, often unprovoked, message directed at a participant of an internet discussion forum.  The content of the message typically disparages the intelligence, sanity, behavior,  knowledge, character, or ancestry of the recipient.
2. v.   The act of sending a hostile message on the internet.

flame warrior
1. n.   One who actively flames, or willingly participates in a flame war ... (Another Example Below) ...


Artiste

 Artiste has an unshakeable faith in his own artistic gifts, and is very pleased to
 share them with everyone else.  Frequently his own insipid poetry will appear
 in his Email signature, and at other times, and to no apparent purpose, he will
 be overcome with the urge to post a poem in the midst of battle.  Artiste, in his
 need to demonstrate his aesthetic sensitivity and cultural sophistication, will
 reference obscure artists to drive his point home.  He assumes that the mere
 mention of, say, Pollaiuolo (Italian,1431 — 1498), will confirm the breadth of
 knowledge and thereby cow his opponent in battle.  Actually, he is universally
 regarded as a pretentious blockhead.  CAUTION:  Artiste often has serious
 mental problems and, though easily defeated in battle, may be unpredictable
 in defeat as well as in victory.


Above courtesy of Mike Reed
See more of his work at: http://redwing.hutman.net/%7Emreed/  
 

  

Welcome To Our New Members:

I would like to welcome all new laryngectomees, caregivers and professionals to WebWhispers! There is much information to be gained from the site and from suggestions submitted by our members on the Email lists.  If you have any questions or constructive criticism please contact Pat or Dutch at Editor@WebWhispers.org.

Take care and stay well!
Murray Allan, WW President

     We welcome the 32 new members who joined us during April 2006:

Abdelmajid Belfahli
Kenitra, Morroco
Adam Black
Leesburg, FL
Torbjørn Bull-Njaa
Skjetten, Norway
Joseph Casele
Southhampton, PA
Ronald Coughlin
Redondo Beach, CA
Samantha DeBois - OSA/CSA Patient
Longview, WA
Elaine Eckhart - Caregiver
Blair, OK
Orlando Falagan
Rancho St. Margarita, CA
Jason Fountain - Vendor (Griffin Labs)
Temecula, CA
Terence Gaffney - Larynx Cancer Patient
Piscataway, NJ
John Gray
Wadesboro, NC
Barbara Green
LaFarge, WI
Bridget Guenther - SLP
Edgewood, NM
Michael Guidicipietro
Nesconset, NY
Kathleen Kauffman
Syracuse, NY
Tracy Knox
Hervey Bay, Qlnd, Australia
Sabrina Kratzer - Caregiver
Cannelton, IN
Rose Kreiser
Lansing, MI
Linda Mackay - SLP
Hartford, CT
Fred MacPherson
Dewey, AZ
Dennis Martin
Huntington Beach, CA
Lynn Martin
Thorold, Ont., Canada
Michael Murray
Nashua, NH
Peter Normanton
Beeston, Leeds, UK
Alphonsus O'Mara
Dalkey, County Dublin, Ireland
Richard Peck
Parma, ID
Sherry Rozar
Mascotte, FL
Keith Severns
Grants Pass, OR
Candace Simpson - Caregiver
Midwest City, OK
John "Tom" South
Fairland, OK
Dick Torkildson
Clancy, MT

Victoria Williams- Caregiver

Yucaipa, CA

   



 
WebWhispers is an Internet-based laryngectomee support group.
  It is a member of the International Association of Laryngectomees.        
  The current officers are:
  Murray Allan..............................President
  Pat Sanders............VP - Web Information
  Terry Duga.........VP - Finance and Admin.
  Libby Fitzgerald.....VP - Member Services
  Dutch Helms............VP - Internet Services
  Herb Simon.........Member, Board of Directors
      

  WebWhispers welcomes all those diagnosed with cancer of the
  larynx or who have lost their voices for other reasons, their
  caregivers, friends and medical personnel.  For complete information
  on membership or for questions about this publication, contact
  Dutch Helms at: webmaster@webwhispers.org   

 

Disclaimers:
The information offered via the WebWhispers Nu-Voice Club and in
http://www.webwhispers.org is not intended as a substitute for professional
medical help or advice but is to be used only as an aid in
  understanding current medical knowledge.  A physician should always be   
consulted for any health problem or medical condition.
************
The statements, comments, and/or opinions expressed in the articles
in Whispers on the Web are those of the authors only and
are not to be construed as those of the WebWhispers management,
its general membership, or this newsletter's editorial staff.



As a charitable organization, as described in IRS § 501(c)(3), the WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions in accordance with IRS § 170.



  © 2006 WebWhispers
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can be found on our
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