Whispers on the Web - April 2004

Name Of Column	Author	Title	Article Type
Musings from the President	Murray Allan	Laryngectomee Ribbon	News & Events
VoicePoints	Lisa Proper, M.S	Tricks Of The Lary Trade	Education-Med
WebWhispers Columnists	Jack Henslee	Bring The IAL To Your Town	Experiences
News, Views, & Plain Talk	Pat Sanders	Copying Other Peoples Work	Education
Bits, Buts, & Bytes	Dutch	Computer Tips	Experiences
Welcome New Members	Listing	Welcome	News & Events

The concept of ribbons to represent a given malady has become very popular of late. It apparently gained initial popularity when our American friends tied yellow ribbons around trees to show their concern for their fighting men and women.

Then later a flood of ribbons emerged as lapel pins representing all manner of things. Some of the better known ones are the pink ribbon for breast cancer and the red one for aids.

There is now no such ribbon for laryngectomees ? although there is a ribbon for ?Head and Neck Cancer?. The Pensacola Association of Laryngectomees and Spouses (PALS) of Pensacola FL, a local IAL-affiliated laryngectomee support group, has suggested a design for a very unique and unusual one for laryngectomees. To quote their proposal:

?For perspective, think of a NASCAR driver. When he wins the race he gets the checkered flag.

We suggest just that. We suggest a ribbon made of a checkered flag to represent the laryngectomee.

The NASCAR racer is in a race with time. If he beats it he is declared the winner and is given the checkered flag. The laryngectomee was in a race with cancer. We beat it. We can declare that we are the winners ? thus we have earned the ribbon made from the checkered flag.

We have proposed this to several organizations with mixed response. Some saw it as a complicated undertaking with costs and distribution problems. There are no problems. We in Florida have begun a project of each club making up their own ribbons, and passing them out to members and friends. The cost is very minimal. The most expensive ribbon I have seen is $6 dollars per ten yard roll. Approximately 60 ribbons can be made from a ten-yard roll. This is a unit cost of, at most, ten cents per ribbon.

Checkered ribbon is available at Walmart, JoAnne Fabrics, Hobby Lobby and most all craft stores, in various widths and price ranges.

PALS is also looking at having pins made up to be used as lapel pins or tie tacks.

We ask all of you, either individually or as support groups to support this idea by making up ribbons and passing them around.

If you have any questions contact me at: sansingj@juno.com

Jim Sansing, PALS Pensacola Florida?

This is certainly an interesting proposal worth exploring further. While no one should stand in the way of any local club doing whatever they feel is appropriate in the area of laryngectomee rehabilitation and support, certain broad-based questions may need to be considered:

(1) Is there need or desire for a laryngectomee-specific ribbon?
(2) If so, what organization or group has the influence, gravitas, or mandate to establish what standard design or pattern that ribbon should take?
(3) Should laryngectomees consider something like what is currently being made available by firms such as: http://www.personalizedcause.com/ ?

While the PALS proposal certainly has merit, the establishment of a ?Standard Laryngectomee Ribbon? is not just of local interest, but of national and international interest as well and will likely require a broad consensus. WebWhispers welcomes further discussion of this project.

Murray Allan, President

Most of us are familiar with the nose blowing and smelling device as described by Zilpha Bosone, Ph.D. in Lauder?s Self-Help for Laryngectomee. This simple but effective device utilizes a purchased baby bottle nipple that is placed on the stoma during exhalation. This same device and stoma use has other possibilities. One is to attach the nipple to a whistle to allow the laryngectomee to use as a signaling/attention getting device or even to communicate with a seeing-eye dog. (Figure 1)

Figure 1 - Whistle

Some individuals may have experienced difficulty in stoma occlusion, which may be due to an irregular shaped stoma, macrostomia, ?micro? finger or reduced manual dexterity. To account for this, one may obviously use a hands free speaking valve or the many available heat moisture exchange systems or stoma vents or buttons to assist in occlusion. However, one of the easiest ways to overcome this difficulty is to utilize a foam stoma cover and occlude over the stoma. Unfortunately, these solutions are not always effective or the individual may not be able to use or may not want to use one of these solutions due to a variety of reasons. In these cases many individuals have developed their own stoma occlusion devices such as the avid golfer who had a golf ball mounted on a silver chain and was able to use this to achieve an adequate seal as well as to sport his love of golf! However, not all stomas conform to commercially available products such as the golf ball. In such a case, one may construct a simple molded covering device (Figure 2), which is made by utilizing an oral disposable swab (such as the Toothette by Sage Products, Inc.) covered by molded splinting material such as ?Orifit? or Polyform.

Figure 2 - Stoma Covering Devices

Your Occupational Therapist will surely be happy to share her ?scraps? of splinting material with you, as the amount you need to construct the device is minimal. The splinting material is heated and molded around the sponge portion of the sponge swab in the desired shape. One must evaluate the easiest angle of placement while the patient is lifting the device to the stoma when determining the shape. This device can further be modified for people with rather limited motor control. One can easily thicken the grip of the stick with thick spongy tape, by utilizing a built up handgrip or any other material that would effectively make the grip larger and therefore easier to hold. However, when this is not adequate, the grip can be placed in a universal utensil cuff. This is essentially a band that fits around the hand and allows a piece of silver ware or in this case the sponge swab to be placed within the pocket of the band. This band can be found in your Occupational Therapy department or catalog, additionally, it can be easily constructed with the use of hook and loop tape.

Before the days of commercially available prosthesis irrigators, resourceful individuals created irrigators from 3cc syringes attached to appropriately cut off red rubber catheters while others found commercially available devices that worked as well. One of my patients discovered that a fabric paint bottle worked extremely well. (Figure 3) To utilize this, one must cut off the long narrow tip to a size just slightly smaller than the diameter of the prosthesis opening. This device has the advantage of having a cap that allows the individual to have an irrigator filled and ready to use. You can purchase these bottles at your craft store or through a craft catalog. Another device suitable for prosthesis irrigation is one I found in a store that sells oil candles with small oil wells. The device I found here, looked almost exactly like the original InHealth irrigator (Figure 3) except that it did not have the white sleeve, which so nicely stopped one from placing the irrigator too far within the prosthesis. The good thing is that the oil candle filler can be wrapped in tape to mimic this same property. Both of these devices are very inexpensive. In fact, when I told the ?candle store? owner what I wanted them for, she just gave me a handful.

Figure 3 - Irrigators

To further assist in cleaning the prosthesis while in place, a colleague has found that a PAP smear brush works quite well and is also extremely economical. He states that he has used two different types of PAP smear brushes (Figure 4).

Figure 4 - PAP Smear Brushes

One type has a protective coating at the end of the wire and the other type, does not. If you have the brush that does not have the protective coating on the end, it is suggested that you coat the ends of the wire brushes that come without the protective coating with epoxy. His instructions for doing this are to allow the epoxy to thicken and begin to set-up, which allows you to get a small round ball of epoxy just on the end of the wire. In a clinical setting, these brushes may be simply thrown out or given to the patient after use. However, the individual patient may clean them by washing them off and place in hydrogen peroxide for 15 to 30 minutes.

Continuing on the topic of brushes, it is possible to slightly bend the Atos and InHealth Advantage cleaning brushes to assist in insertion into the prosthesis in which the fistula site may not be at the ?ideal? position.

Clinicians and patients alike are always on the outlook for ways to make prosthesis insertion easier especially when that fistula may not be in that perfect position or with the ideal ?slant?. One such way to ease insertion may be to put a slight and gentle bend on the inserter stick of the traditional and Indwelling InHealth Voice Prosthesis Inserter sticks (Figure 5).

Figure 5 - Bent InHealth Inserter Stick

It is recommended that you first try this with an old or extra inserter stick, as they will break if you bend them too far or too hard. It is also possible to bend the brushes and the inserter sticks by placing them in one of the warmers used by Otolaryngologists to heat their laryngeal mirrors.

No doubt, anyone who places 20 Fr. InHealth Voice Prosthesis knows the technique of hand loading a 16 Fr. gel cap on to the 20 Fr. prosthesis, as advocated by Eric Blom, Ph.D., is a fabulous tidbit of information to ease insertion. Not only does loading the 20 Fr. diameter prosthesis into the smaller diameter gel cap aid in regular insertion, but it also decreases the dilation time when converting a patient from a 16 Fr. diameter prosthesis to a 20 Fr. diameter prosthesis.

This ability to utilize the smaller gel cap is not possible with the new InHealth Advantage 20 Fr. Indwelling Prosthesis. InHealth has solved this with the new tapered gel cap. However, a colleague pointed out a potential problem in that only two gel caps come to a pack and at the present time, the company does not sell ?extra? caps. So, what happens if you drop or use all your tapered gel caps? The easiest solution, of course, is to protect the unused gel caps for future use by not putting them in a contaminated place, but another solution is that the Advantage Prosthesis can be easily hand loaded into a regular 20 Fr. gel cap.

Many times patients and clinicians alike are anxious when inserting a voice prosthesis, especially those individuals who are just beginning. To reduce the anxiety of possible loss of the prosthesis into the airway, it is possible to attach the inserter strap of a non-indwelling, or some of the indwelling, voice prosthesis? to a large button The button size should be larger than any stoma would be. The button may be attached with suture material; monofilament or even strong upholstery thread to prevent lodging the prosthesis within the airway. Poker chips drilled with a tiny hole also work well and are less expensive then buying large buttons (Figure 6). The button is then usually pinned to the inside of the wearer?s shirt or blouse.

Figure 6 - Drilled Poker Chips

Prosthesis care and candida control is yet another topic that is highly discussed beyond all textbooks and journals. Nystatin has long been the prescriptive medicine of choice, while others advocate such products as Mycelex Troches and even Diflucan. The differences in cost, however, are significant. Others have suggested increasing the oral consumption of natural antifungal agents such as cranberry juice, buttermilk and high active yeast yogurt, not to mention the use of the product acidophilus. Atos advocates keeping a separate container of Nystatin to dip their brush in, just prior to use. A colleague reminds us, that anyone using Nystatin or any antifungal agent needs to also treat his or her toothbrush or denture brush. The brush should be soaked minimally from 15-30 minutes, however, soaking the device all day works as well. You may soak the brush in Nystatin or Hydrogen Peroxide, with the later being much more cost effective. Denture wearers need to swish with Nystatin without the dentures in place and treat dentures separately by soaking in hydrogen peroxide or any commercial cleaning product.

Did you know that commercially available 320-grit sandpaper might be used to smooth the edges of cut silicone such as the outside surface of a stoma vent or tube as well as that of a slightly trimmed tracheal flange of a Provox II voice prosthesis? Of course, even better is to have your Audiologist smooth your product with their grinder, but even after grinding, you still may have to finish with the sand paper.

The training and use of the artificial larynx has employed many ?beyond the textbook? techniques as well. One such technique can be utilized when an individual requires training in the use of the oral adaptor for electro laryngeal communication. The oral straws which generally come with the devices today are wider in diameter and have the ?saliva catchers? attached making the straw larger within the oral cavity which in turn makes it more difficult for the new patient to learn. It has been found that if you use the thin straws without the saliva catchers or even a regular shortened drinking flexi-straw, that the patient will have an easier time mastering articulation. If the patient is going to use the non-drinking straw, it is best to cut to small holes near the top of the straw to allow for easier saliva removal. If the patient still has difficulty with the concept of speaking with the straw in the mouth, a useful technique is to have the patient speak with his/her finger in the mouth and then mimic this ability with the oral straw.

If a patient is utilizing a Cooper-Rand device and has reduced manual dexterity, the use of the previously mentioned ?built-up foam hand grip? can be easily used for this device as well. This same technique can be used with patients who are unable to lift or hold the other devices in place for any length of time due to reduced muscular strength in the shoulder or arm. Also remember the Cooper-Rand can be used with various switches, such as the eyebrow switch, mounted on a stand for patients with no manual mobility.

Carrying the artificial larynx is sometimes a problem for those individuals who prefer not to use the neck cord. For these individuals, one may want to utilize a soft eyeglass, cell phone, calculator or personal organizer case that has a clip. This clip can then be attached to a belt or purse. The eyeglass case and cell phone holders are generally the same size as the artificial larynx while the others are larger and may even have a closure. The larger holders would allow space for extra batteries, straws, or other supplies.

For immediate post-operative communication, it is recommended that the patient use a ?Magna Doodle? or a magic slate. These are preferable over a dry erase board as the ?eraser? is built in. Additionally, during the pre-operative consultation, we give our patients InHealth?s ?Laryngectomy Needs Chart? as well as encourage them to bring a notebook to write down information they desire to repeat to others later.

The ideas presented within this article are by no means a complete list of all the resourceful solutions used by clinicians and patients throughout the years of laryngectomee rehabilitation. Additionally one is cautioned to remember that with all ideas, no one solution fits all patients and the ideas within should be considered for use on an individual basis only. However, it is hoped that this article will inspire individuals to not only share their own resourceful solutions with others but also to stir the creative juices within us all in order to provide the best possible care to the laryngectomized individual. Think outside the box the next time you go shopping for a candle!

(2) Some Thoughts on Internet Viruses and Worms

"A Clueless Few Diminish the Internet Community"
(Courtesy of Dwight Silverman, Houston Chronicle Computing Columnist, March 2004)

"If you've been feeling under siege lately from computer viruses and worms, you're not paranoid. Yes, the authors of these malicious codes really are out to get you, and with increasing frequency. And the war appears to be well under way. Antivirus companies report that the pace of release of new versions of these worms is quickening, forcing them to scramble to issue updates for their scanning products.

All of these viruses and worms are propagated via e-mail, arriving as an attachment to messages that entice users to open them. Of course, viruses and worms dispatched via e-mail would not be a problem if clueless users didn't click on the attachments in the first place. Yes, virus writers are scum who deserve whatever maximum punishment the law allows. But those who, after countless warnings, still click on attachments they're not expecting ? or who don't run up-to-date antivirus software that would catch this junk or who do not keep their operating system "patched" and up to date ? bear much of the blame. This has been a complaint among the techno-savvy for years.

There have even been calls for an "Internet driver's license," in which users would have to prove they know what they're doing before being granted access to the online world. The argument for that idea goes something like this:

A computer network is a combination of various users' resources, shared for the benefit of all. It is, in other words, a community. Each member of the network community has a responsibility to behave in a manner that won't disrupt or harm others.

When a user clicks on a virus, that's not simply damaging one computer ? and with some stealthy viruses, the infection may not be readily apparent. Rather, because most modern viruses try to spread via e-mail, that action puts at risk everyone whose address is found on the infected PC.

There are more complications. Viruses e-mailed to corporate addresses can trigger an alert to the sender from firewall-based antivirus software. Because most viruses that spread by e-mail falsify the sender's address, those alerts are more than useless. They can clog up e-mail servers and render inboxes unusable.

Finally, many of the current crop of viruses do more than just try to infect other machines. They also open up a port on the computer and allow a hacker to take control. These so-called "zombie" machines can and have been used to attack other computers on the Internet. Some antivirus experts speculate zombie PCs could be used to blast huge amounts of spam all over the net.

Requiring that folks know the basics about computer security before giving them access to the network is akin to making sure a driver knows how to safely operate a car before he or she is allowed to take to the public roadways. On the surface, it makes a lot of sense.

Of course, there are plenty of arguments against this notion, too, ranging from further government intrusion in our lives to the sticky question of enforcement. And then there's the fact that the connected PC has become a powerful means of personal expression, which raises First Amendment concerns.

But something needs to be done to ratchet down the mayhem, both by catching and punishing virus writers, and by convincing people not to click with abandon on everything that comes into their inbox ? before the criminal and the clueless few ruin the Internet for the responsible many."

(Note: Your Webmaster's anti-virus software is now protecting him from over 66,160 known viruses and worms ... Yes, SIXTY-SIX THOUSAND+ ... something to think about!)

(3) Sham Sites Are a Scam: There Is No ?National Do Not E-mail Registry?

     Have you submitted your Email address to a ?National Do Not E-mail Registry? that promises to reduce the amount of spam (unsolicited Email) you receive? If so, you are the victim of a scam, according to the Federal Trade Commission, the nation?s consumer protection agency.

     The web site at ?unsub.us? mimicked the language, look, and navigation of the web site for the National Do Not Call Registry, a legitimate free service of the federal government. The "unsub.us" site was not run or authorized by the FTC. Several other web sites, such as "remove.org" and "globalremove.com" raise similar concerns. Be careful!

     More at: http://www.ftc.gov/opa/2004/02/spamcam.htm

Cathy Adams - Caregiver

Pleasant Garden, NC

Janet Breski - Vendor

Island Heights, NJ

Nell Geiger - Caregiver

John Hagenmaier - Caregiver

Indianapolis, IN

Marcie Hanaburgh - Caregiver

Debra King - Caregiver/LPN

Wombourne, S. Staffs, UK

Wanda Mastin - Caregiver

Frank & Eva Faye Meek

Helen Miller - Caregiver

Montreal, Quebec, Canada

Julie Prentice - Caregiver

North Hollywood, CA

Ellicott City, MD

Karen Tieken - Vendor/Dietitian

Staten Island, NY

Rotonda West, FL

Donna Wagner - Caregiver

Mark Welch - Vendor

Bob & Karen Wilson

Chris Wilson - Caregiver

Clinton Township, MI

Oak Forest, IL

Melanie Wood - Caregiver

Grand Prairie, TX

Cathy Adams - Caregiver Marlton, NJ	Fred Armani Pleasant Garden, NC	Janet Breski - Vendor Boise, ID
Ivan Brumm Alamo, TX	Tang Yu Chung Hong Kong	Mike Connolly Flushing, NY
Jeanne Dalley Wyoming, PA	Matt Dillon Island Heights, NJ	John Fehr Hamburg, NY
Larry Garbarino Naugatuck, CT	Nell Geiger - Caregiver Pennington, NJ	Darlene Gibson Marrero, LA
John Hagenmaier - Caregiver Indianapolis, IN	Marcie Hanaburgh - Caregiver Belleview, FL	Earl Hilton Midlothian, VA
Richard Hinson Matthews, NC	Pat Hopping Plantation, FL	Robb Jones Littleton, CO
Debra King - Caregiver/LPN White Hall, IL	Rob Lowe Wombourne, S. Staffs, UK	Wanda Mastin - Caregiver Titusville, FL
Frank & Eva Faye Meek Montgomery, AL	Helen Miller - Caregiver Atwood, CO	Donna Nash Lake Wales, FL
Patrick Onofrio Montreal, Quebec, Canada	Kari Osur - SLP New York, NY	Julie Prentice - Caregiver North Hollywood, CA
Mark Rozek Bay City, MI	Ian Smith Manchester, UK	Greg Snead Ellicott City, MD
Graham Taylor Erith, Kent, UK	John Thomas Port Orange, FL	Karen Tieken - Vendor/Dietitian Renton, WA
Nancy Tortorici Staten Island, NY	Jim Waceken Rotonda West, FL	Donna Wagner - Caregiver Brooklyn, NY
Russell Walrath Florence, SC	Mark Welch - Vendor Omaha, NE	Bob & Karen Wilson Macomb, MI
Chris Wilson - Caregiver Clinton Township, MI	Paul Winkle Oak Forest, IL Melanie Wood - Caregiver Grand Prairie, TX	Richard Winter Sandy, UT