August 2005


 

Name Of Column Author Title Article Type
Musings From The President Murray Allan Libby Fitzgerald News & Events
VoicePoints Dr. Jeff Searl TE Speech Rehab Education-Med
Living The Lary Lifestyle          Joan G. Burnside Chapter Six Education-Med
News You Can Use Scott Bachman I- Safe Can Help Us Out Education
Between Friends          Donna McGary Of Gods & Terrorists Experiences
Bits,Buts & Bytes Dutch Computer Tips Experiences
New Members Listing Welcome News & Events

 

 

                Murray's Mumbles ... Musings from the President

Profile of a WebWhispers Executive Committee Member
 Olympia (Libby) Fitzgerald

 
There is an old saying that if you want something done then ask a busy person.  That is most certainly true with Libby.  In addition to being the wife of John, a retired educator, she is a busy and successful realtor.  Libby is the Vice-President - Member Services for WebWhispers and an active member of the International Association of Laryngectomees (IAL) Executive Committee and Board of Directors and sits on many committees in addition to being active in her own club, the New Voice Club of Danbury, Connecticut.
 
Libby became a laryngectomee due to acquiring adenoid cystic fibrosis (ACC).  ACC is a very rare type of head and neck cancer which differs greatly from the squamous cell cancer that the majority of laryngectomees are afflicted with.  Libby has taken the positive approach to her situation and lectures widely about her disease to medical personnel to further understanding of ACC.
 
Libby volunteers as a peer mentor in conjunction with Ann's Place, the home of ICan in Danbury, CT (affiliated with the ACS).  She is also a member of ACCOI and ADENCYST, online support and research  groups for adenoid cystic carcinoma
 
Ironically, John and Libby's daughter, Erin, is a speech language pathologist.  Erin and her husband Paul have a son, James, and of course you know that James is the apple of Grandma's and Grandpa's eyes!
 
Currently, in addition to all her other duties Libby is deeply involved in arranging the annual WebWhispers dinner which is being held  in conjunction with the next IAL convention in Boston.  In addition, she has the task of buying and having all the awards engraved and of course ensuring that they are error free.
 
As VP - Member Services, Libby is responsible for our loaner closet which is ably run by our Florida member, Judy Ramboldt.  Libby responsibilities also involve maintaining our computer data base and she is very fortunate to have our volunteer, Sabine Paul, complete this task.
 
By the way, did I mention that Libby lives in Sherman, CT?  For you trivia buffs Roger Sherman was one of the original signers of the Declaration of Independence.
 
On behalf of all of the Executive Committee I thank Libby for her tremendous energy and enthusiasm in furthering our goal - Total Rehabilitation of all Laryngectomees!
 
Take care and stay well.
 
Murray Allan


 VoicePoints [ ? 2005 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

PART II

Remembering Articulation in Tracheoesophageal Speech Rehabilitation
by Dr. Jeff Searl

            In the February 2005 VoicePoints column, I wrote a short piece arguing the need for SLPs to not forget about maximizing articulation training in the speech rehabilitation process. I was fortunate that several thoughtful readers (nearly 10 of them in fact) gave me feedback on that article. Some were SLPs and others were people who have had a laryngectomy. Most were supportive of the notion that many-a-laryngectomy patient has either opted out of or been discharged from speech therapy with insufficient evaluation or remediation of articulatory behaviors. Let me share some of that feedback as a long introduction to what follows regarding articulation therapy for the TE speaker.

One pleasant woman (I?ll call her Mary) took the initiative to track me down and relay her laryngectomy rehabilitation story to me over the phone. Sentiments within her story were echoed by two others unbeknownst to her. Mary lived on a ranch in a rural part of a Midwestern state. She had a laryngectomy at age 48 and a tracheoesophageal (TE) puncture done within the year after that, using an indwelling voice prosthesis. She was a ?success,? producing strong and continuous voicing on her very first attempt in the ENT?s office, counting to 15 without trouble, placing her finger just so over the stoma, and demonstrating to the SLP that she knew exactly how to flush out and clean the prosthesis. She did fine at home on her ranch, talking with her husband, kids, relatives and friends. According to Mary, others seemed to understand her just fine. Three years later, she happened to be in the ENT?s office at the same time as another woman using TE speech who was chatting with the nurse in the doorway. Mary took casual notice, sizing up her comrade, covertly critiquing the other woman?s TE voice as Mary pretended to read a magazine. She never spoke to the woman. On the three hour drive home, her husband mentioned at least five times what a good speaker the other ?TE woman? was. After a bit of discussion, the husband acknowledged that while he usually understood Mary when she talked, he didn?t always. Without saying it, Mary knew that her husband was telling her that she wasn?t as understandable as the other woman in the doctor?s office. This was motivation enough for Mary, a proud woman who had a lot to say, to make her speech better. She found a local SLP in the schools who worked with her (with that SLP consulting with a more experienced SLP). Her TE voice was strong. Her articulation was not and it served as the focus of intervention. Mary couldn?t be more pleased with the comments she?s gotten since re-enrolling in SLP therapy, even from those who have ?always understood everything? she said. I didn?t follow Mary?s case myself and I don?t know how much her articulation actually improved, but I?ve seen enough similar cases to have some confidence that sharpening up her articulation helped push Mary from adequate to excellent TE speech.

 The SLPs who wrote were somewhat less convinced of the need for more articulation training, particularly as it related to TE speech. Two of them indicated that once a patient was getting good TE voice, knew how to take care of the prosthesis, and knew when they should re-contact the SLP or ENT, then that patient could be turned lose to use the new voice with good success in nearly all cases. In some ways I couldn?t argue. Most TE speakers do well once they get the mechanics of voice production down. I guess I might argue more about what is meant by ?success?; is the goal to have acceptable TE speech or really great TE speech? The answer of course will depend on the laryngectomee, the SLP, and the situation. Another SLP reader who gave me feedback indicated that she saw the need for more training, but wondered how to make that therapy happen within the constraints of her practice and the limits on therapy imposed by some of the insurance companies. A fourth saw the need, but wasn?t exactly sure what format and focus the articulation therapy should take for a TE speaker.

As you might notice, the comments I?ve chosen relate to tracheoesophageal rather than esophageal or artificial larynx speech. This narrowed focus is not a slight to esophageal or artificial larynx speakers. Although I don?t have hard data, my clinical impression is that most SLPs recognize the need for maximizing articulation in esophageal and artificial larynx speech (although it may still get short shrift even in these) and so it becomes part of that therapeutic process. The same can?t generally be said of TE speech based on my interactions with other SLPs and in reading the literature on TE speech. For that reason, I have opted to focus what follows on TE speech and I have used some of the feedback on the February column to guide the content and structure. 

Do all TE speakers need more therapy?

            The answer is a definite . . .  maybe. As I am trying to figure out whether a particular speaker needs articulation therapy work, I keep a few things in mind. First, being a good TE speaker is not dependent on all aspects of speech production being ideal (I took this from the writings of Mary Carpenter who was writing more broadly about any form of alaryngeal communication; see Carpenter (1999) in the reference section). A non-laryngectomized person might have sufficient speech skills for their needs even though they have some weakness (perhaps they misarticulate their ?s? or speak too fast or ?). The same might be true for the person with a laryngectomy. Perhaps a strong TE voice, appropriate speaking rate and additional linguistic/communicative strategies to ensure a message is transmitted, are enough for a given speaker even if their articulation is not particularly good.

            However, a second perspective that I keep in mind as a clinician is: ?stack the deck? for the listener to ensure the message gets across (Samual Haroldson talks about this in his writings; see Haroldson, 1999). That is, give the listener as much acoustic (and other) information as they need, and maybe a bit more, so that they can understand the TE speech despite its unique qualities. In this frame of mind, I want to nitpick with my TE users and identify all of the areas in which they might make their TE speech excellent. There is a growing body of research in other areas of communication disorders, namely, listener perceptions of accented speech, synthetic speech, and dysarthria [the distorted speech that sometimes happens with a stroke or other neurological diseases], indicating that listeners take a longer time and expend more cognitive energy to decode speech that is unique or different. TE speech certainly could qualify as unique or different in many cases, sometimes because of how it sounds, but also because of how it is produced (particularly if a hands free valve is not being used). As a novel type of speech, then, it may be helpful to maximize articulation as well as all other aspects of speech production to  insure successful communication that is not cognitively draining on the listener.

            One of my roles as an SLP is to balance out these two issues: ?The TE speaker doesn?t have to be perfect to be a proficient communicator.? vs. ?There are enough differences in even good TE speech that I want to give the listener as much accurate information to process as possible.? Input from the TE user regarding their communication needs and difficulties, the family?s impressions of the TE speech, and my own observations help sway the therapeutic direction toward persistence in perfecting articulation or tolerance of some laxity in this regard.

What I have to do as an SLP is actively evaluate their articulation and provide them with my impressions regarding deficits and potential room for improvement, if any. When do I do this? Usually, I do my first set of observations of their articulation as I meet them for the first time and we chat about their history as a laryngectomee. Then I complete a more formal evaluation of their articulation within this first visit as well. How do I do this? There is not a formal ?test? available to assess articulation in alaryngeal speech. I usually proceed with two tasks that allow me to observe various aspects of articulation. The first is an articulation inventory similar to what an SLP might do when evaluating how a person with a stroke or a child with a speech disorder articulates all the sounds in English. It?s not fancy. I have a list of words that I run through with each of the consonants at the start, in the middle, and at the end of a short word. I have the TE user read or repeat these after me as I make notes about how the target sound was produced (did they omit the sound completely? was it distorted? if so, how was it distorted? did they pronounce it as a different sound than what was intended?).

The literature on articulation errors in TE speech is sparse, but does suggest a few things. First, I pay attention to pressures consonants (stops such as p, b, t, d, k, and g, fricatives such as s, z, f, v, th, and affricates such as the ?j? sound), just as I would for esophageal and artificial larynx speech. TE speakers usually benefit from a more audible plosion on stops and stronger fricative noise on fricatives in order to compete with the sometimes noisier voice compared to a non-laryngectomized speaker. That means they need to be able to produce a ?p? with a stronger ?pop? or produce the ?s? with a more audible hissing noise than a non-laryngectomized person. If I do not hear audible plosions/frications (or I hear them as weak), I will have the person produce the articulatory inventory without using their TE voice (i.e., mouthing it) so that I can really focus my ears on whether there is any audible pops or hisses on the pressure consonants. I do listen for the other types of sounds such as liquids (?l? and ?r?), glides (?w? and ?y?) and vowels, but these tend to be less of a problem. 

            Besides possibly not producing strong bursts and frication, the TE speaker also is at risk for what are called ?voicing? errors. In English and other languages, there are pairs of speech sounds such as p-b, t-d, and k-g that are produced essentially the same except one sound is said to be voiced and the other voiceless. Roughly speaking, voiced simply means that there is some noise (i.e., voice) being generated by the larynx during the production of the consonant (b, d, and g are voiced) and voiceless means there is no voice during the consonant (p, t, k are voiceless). In the person without a larynx who is using TE speech, there is an increased chance that voiceless sounds are going to be heard by the listener as a voiced sound (so p?s are heard as b?s). So I pay particular attention to these pairs of sounds in the articulation inventory.

            Again, although not as well documented in the research literature, TE users are at risk for having trouble producing ?h? (what is known in the SLP trade as a voiceless glottal fricative) because of the nature of their new voice source. In a non-laryngectomized person, the ?h? requires air flowing between vocal folds in the larynx (or voice box), but without the vocal folds vibrating. The TE user, of course, doesn?t have vocal folds, but rather uses tissue at the top of the esophagus for vibration to create voice. This tissue is likely to vibrate if we build enough air pressure in the esophagus and it is not clear whether most TE users are capable of intentionally opening this tissue to allow airflow without voicing for brief moments during speech. As such, they may voice right through the ?h? (like esophageal speakers), making it sound like the vowel ?a? instead.

            The articulation inventory should account for the position of the consonant within the word or syllable. That is, put each consonant at the beginning and end as well as the middle of the word. The expectation is that listeners will be better able to understand the sounds that start the word rather than those that end it or that are placed in the middle.

            The articulation inventory allows the SLP to pay specific attention to each sound in a controlled set of productions. However, what we expect is that many folks will be able to muster all their resources and abilities for this ?test?. The SLP also needs to listen to how the TE user articulates in more spontaneous speech productions to see how they do when the speech task becomes more complex, longer, less predictable, and filled with greater distractions (for both the listener and the speaker). I engage the person using TE speech in conversation or I try to elicit what are essentially monologues depending on what the person appears to be most comfortable with. I keep notes during this speech sample of the specific articulation issues that I observe. Observations that I include are the perception of distortion, omission, or substitution of any speech sounds. In addition, I can estimate how much of the spontaneous speech I understand (usually I estimate this as a percent, e.g., He was 75% intelligible). I also have the opportunity to make note of how natural the person looks and sounds when talking. Visually, I want to see if they are doing the stoic, stoned face speech with extremely limited mouth movements. Or, are they over-exaggerating so much that the extra mouth movements are distracting and bizarre? How do they hold their head, hand, and arm when speaking? Positioning could impact how much I understand of their speech in a couple of ways. First, if the posturing is unusual, I may simply be distracted by it, diverting some of my mental energy away from the task of understanding what might already be a unique type of speech. Second, the head position could be altered such that I don?t have a great view of the speakers face and lips. Remember that we may want to stack the deck in favor of the listener. Letting the listener see your face may help them understand what you are saying. In fact, I routinely try to estimate TE speaker intelligibility when I am looking at the speaker?s face and when I am not to see how much the visual cues help or hinder their speech. I recall at least a handful of TE users who used some degree of head turn when speaking, either to allow the best stoma coverage or perhaps to optimize the quality of their voice. However, for two gentlemen, the head turn was enough off midline that they had to alter their full body position to keep their face visible because they lost too much intelligibility if their lips weren?t in view.

What are you likely to get from your observations of TE speaker articulation? Some TE users intuit exactly what they need to do articulation-wise to maximize their speech intelligibility without any help. I know that I have seen a lot of folks who altered their speech on their own (usually by slowing down and over-articulating slightly) exactly as I might have suggested. However, in my experience, most TE speakers have room for improvement. Whether or not improvement is pursued is based only in part on my observations of their articulation as alluded to previously. They need to be motivated to improve (and I as the SLP may have to provide some, but not all, of the motivation) and the practicalities of the situation must be worked out in terms of how the therapy will be delivered. But what will the therapy look like if you do it

What do they need?

            This part is pretty straightforward. The therapeutic interventions are not particularly novel for improving articulation in TE speech. If they are speaking too fast and gliding over or leaving out certain sounds, we slow them down just like we might with any other person, laryngectomized or not. If they are having trouble making strong ?p?s and ?b?s then we go back to the same type of articulation training that we would use when instructing in use of the artificial larynx or esophageal speech. Often this includes producing the consonants first without any TE voice, focusing on pressing the articulators together a bit more forcefully and perhaps for a bit longer. There needs to be some care in doing this in the TE speaker compared to the esophageal or the artificial larynx speaker. In my experience, the over-exaggerated articulation can be over-done in the TE speaker. Clinically, I have seen folks who come to TE speech after having used either an artificial larynx or esophageal speech for some time previously who might have to be taught to do less strong stops and fricatives (remember, these are sounds like, p, b, t,d, f, s, etc.). For the former esophageal speaker, pressure consonants might have served as a means of helping to get esophageal voice sounds. Now when they switch to TE speech, too much force used during articulation could cause them to put air into the esophagus from the mouth. As Lewin (1999) described, this could interfere with the smooth production of voice being generated from air passing through the TE prosthesis and into the esophagus from below. The former artificial larynx user had extreme limits in generating airflow through the mouth, and so fairly exaggerated articulation was called for to create the necessary speech ?noises?. However, the degree of exaggeration needed in TE speech is likely less because the TE speaker has the ability to create airflows through the throat and mouth via the TE puncture. If the precise articulation is costly ? a visual distracter to the listener, excess mental or physical energy to execute on the part of the speaker ? then it may be helpful to actually decrease the exaggerated articulation once they shift into TE speech. In my experience, most folks make this switch without any direct instruction, but that has not always been the case. A balance between understandable speech and natural appearing/sounding speech is a must throughout the articulation training process.

            For those TE speakers who are striving for excellence, I sometimes work on producing a perceptually more accurate ?h?, although not often. One business man in particular needed to be able to produce an ?h? because both his first and last name started with that sound and he introduced himself to many new people each day. We stole from the strategies used in esophageal speech training. For him, a prolonged ?a? in place of the ?h? gave the listener the impression of an ?h? and so he went with that.

            Finally, the TE speaker trying for the clearest speech possible almost certainly will need to pay attention to producing fairly strong consonants not just at the beginning of words and syllables, but also those that are at the end or in the middle. Folks without a laryngectomy can get away with producing fairly weak and very short ?p?s and ?b?s at the ends of words. The TE speaker who does so may not have the same luxury, at least not to the same degree. The instructions here are also simple. A slight reduction in speaking rate may do the trick. Alternatively, instructing the TE speaker to speak ?clearly, as if someone is having trouble understanding you? may be enough to get the weak or missing sounds filled in (such an instruction in a non-laryngectomized speaker tends to get this desired result). Of course, the tactic is straightforward, but establishing the slower rate or the ?clearer? speech as the persons new way to talk still takes time and practice. 

Where do we find the time?

            One SLP who gave me some feedback on the Part I article wondered how SLPs can squeeze in the articulation therapy along with the instructions needed for voice production and prosthesis care. Her concern was the constraint from insurance companies on number of visits and what activities will be covered. This is a valid concern. We?ll talk more about some interesting ideas for service delivery in this area in Part III. Several folks working in this area have been kind enough to share with me their approaches to service delivery . Some of them are very creative and would work well in a number of settings. Until then, I would encourage SLPs and laryngectomees to start getting their head around the fact that articulation issues shouldn?t be ?squeezed into therapy? ? articulation evaluation and training should be integral to the TE speech rehabilitation process.



 
 Living the Lary Lifestyle          Joan G. Burnside, M.A.
  Copyright 2005

 

CHAPTER SIX

Tips 51 through 60 

"You have to accept whatever comes
and the only important thing is that
you meet it with courage and with
the best that you have to give."

- Eleanor Roosevelt-
       

TIP # 51, UNLOCK YOUR JAW

If it?s getting harder to open your mouth for eating or yawning, try range-of-motion exercises.  This could include opening and closing your mouth in the regular up and down manner, and moving your jaw from side to side.  When you see your doctor, you may be referred to the dental clinic, where you could hear that your earlier radiation treatments are still at work.  A Therabite device may be given to you or prescribed.  You put it into your mouth several times a day, and little by little, your jaw opening widens until you meet your goal.  Some people must use it every day, while others use it off and on, whenever things start getting a little tight.

JB?s note:  This really worked for me.  Little disposable, ruler-like measurers are included so you can track your progress towards your goal. (Something else to record in your book.)

TIP # 52:  SHRINK OR ENLARGE YOUR TEP

One Lary?s SLP showed him how to deal with his stretched tracheo-esophageal puncture (TEP) which was allowing leakage around the prosthesis. She has him remove the prosthesis, place a smaller size catheter inside the TEP, wait a few hours for the TEP to shrink and then replace the prosthesis.  Another Lary had difficulty when changing the prosthesis and needed to widen the  opening.  She was instructed to remove the prosthesis, place a larger catheter in the TEP and wait 20 minutes for the TEP to enlarge, before inserting the new prosthesis.

JB?s note:  This was the key for my being able to change the prosthesis on my own, but it turned out that I needed to leave the catheter in for about 40 minutes.

TIP # 53:  GRITS ARE GREAT

This distinctively southern food is perfect for Larys.  You can vary its mushiness according to your swallowing ability.  It?s a great carrier for apple chunks, sausage bits, cheese and almost anything you want to put into it.  It loves being flavored with syrup, honey or home made preserves.  Or you can eat it like any hot cereal with milk.  The Italian version is called Polenta.  Both grits and polenta can be fried and served in slices or little cakes.

JB?s note:  My first restaurant breakfast after my total laryngectomy was eggs, biscuits, grits and bacon.  Delicious.  And it took only an hour and a half to eat it.

TIP # 54  PIPE CLEANERS MAKE GOOD BRUSHES

Pipe cleaners work for cleaning your prosthesis.  Don?t use the hobby store kind, but the real thing you buy in a tobacco shop. (Just be sure to bend the end down so you don't poke your esophagus with sharp metal.)

JB?s note:  This tip came from a Lary via one of my SLP?s.  Can?t help but think that this could provide a ?teachable moment? as they say in the school business.

TIP # 55:  CARRY A KIT

Actually you?ll need two.  In your everyday, around-town kit, you might take just the emergency essentials:  an adhesive baseplate,  HME, brush, tweezers, catheter, syringe, skin cleaner, foam stoma cover, whatever you would need or want for a temporary fix close to home.  All of this fits easily into a baggie.

For serious travel, you?ll need to take everything, an extra prosthesis, your prosthesis plug, an extra handsfree valve, magnifying mirror, flashlight with extra batteries, electrolarynx with extra battery, your set of catheters, if you use different sizes, and plenty of all your supplies.  Try to stay ahead on your regular ordering so that you always have a trip?s worth of supplies.

JB?s note, Did you see the TV episode where grandma?s luggage has taken off without her, while she is still in the terminal?  Her daughter is really peeved because nobody had told them they should keep medications in a carryon, instead of in checked luggage.  A cautionary tale for a few people.  Keep your stuff with you.

TIP # 56: CLEAR YOUR PEG FEEDING TUBE WITH COKE

Just pour it in, then shake it.  Hard.  One Lary?s wife suggests using vinegar and water.  She shoots it into the tube with a smaller syringe, so it will push the clog down.

JB?s note: Using Coke or any kind of club soda will work.

TIP # 57: ESTABLISH A NEW VOICE IDENTITY

Some Larys have had little or no voice for a long while before their total laryngectomies.  These folks may welcome or tolerate the sound of the electrolarynx or TEP simply because they can communicate again.  Others, who have had a much faster transition, find themselves mourning the loss of their voices as if voice is synonymous with identity.  There is an elegantly written article about this in the Web Whispers Journal.  There have been several Lary comments about how their spouses always thought they were the same people.  So who would know better?

JB?s note:  I enjoyed a firestorm on WebWhispers recently over the use of the electrolarynx vs the TEP.  The crowd got so partisan that the webmaster had to come online to calm the writers down.  This debate did prove to me that once you own your new voice, your original voice is no longer the issue.

TIP # 58: DON?T EVEN THINK OF SWIMMING

?Don?t swim? is the mandate most of us get when we first start learning about laryngectomy.  But then other information starts emerging about swimming devices such as the Larkel, or swimming with one arm while occluding the stoma.  There?s even an annual demonstration at the International Association of Laryngectomees meeting each year.  Many Larys refuse to take any such chance.

JB?s note:  I?m still adjusting to the tub and shower so I won?t be swimming at the next IAL meeting.

TIP # 59: WEAR YOUR TIE TIGHT

advises one male lary via another.  With a little pressure on your hands free device, you may not blow the seal on your baseplate.

TIP # 60:  STICK YOUR TONGUE OUT

A workout for your tongue can improve your eating and speaking ability.  First, stick it out in front as high as you can with your mouth wide open and hold it for a second.  Then raise the back of your tongue as high as possible, holding for a second.  Try, then, to push your cheeks out with your tongue, followed by sticking your tongue straight out and pulling it as far back as possible.  Hold for just one second for each movement.  Repeat the sequence several times daily.

JB?s note:  I do these and use my Therabite whenever things ?tighten up? on occasion.

LET?S TALK:

Have you had problems with your tongue?  Not everyone does, but it?s not uncommon, either.  How are you adjusting to your voice?  Or are you still trying to get one?  Have you tried grits or polenta, yet, or are you already gritty?  And what would it be worth to you to swim again?  Your comments, progress notes, sketches or graphs in your notebook would be great.  And what was the problem you wanted the doctor or SLP to know about?  Any new WebWhispers e-mail to paste in?



       REPORTS FROM ROBOCOP?S REPOSITORY
                                                                     Or
                     News You Can Use ... by Officer Scott Bachman

                                          


i-Safe Can Help Us Out

The following is an article found in the current issue of the i--SAFE America newsletter.

The United States Congress has designated i-SAFE America Inc, a non-profit Internet safety foundation, to bring Internet safety education and awareness to the youth of this country.   Founded in 1998, i-SAFE is a proactive prevention-oriented Internet safety awareness program. They provide age-appropriate K-12 curriculum to schools in all 50 states FREE of charge.  i-SAFE has become a very valuable resource for law enforcement and the partnership which has been developed will benefit all those who utilize the Internet, not just our youth.  Given the uses and abuses associated with the Internet this is important information to share with family members and friends, not unlike the Babysitting Tips which were offered in the past.  There is always someone you know who may benefit from this.

(The article has been edited slightly for content.  Officer Bachman is not a representative of i-SAFE, however he is involved in ongoing training provided by i-SAFE.)

 ------------------------------------------------------------------------------------------------------------------------------ 

            The Internet has given shoppers a virtually hassle-free way to compare prices and brand names, and to purchase almost anything online without ever leaving their home, including legal, or even illegal, drugs.  The drug dealer is no longer lurking around your neighborhood corner; he is dealing openly in Cyberspace and making himself available at the click of a mouse.  Most of us have even received e-mails, or have seen pop-up ads, for ?prescription medications for less? or ?medications delivered right to your door.?  Steroids, narcotics, ?club drugs,? chemicals needed to manufacture drugs, and even legal substances (i.e. alcohol, cigarettes) often not available to underage users are readily available online without an ID or prescription. ?This unprecedented access to online substances has given parents another thing to worry about in the war against drugs.? The Partnership for a Drug-Free America reports in its 17th annual national study of teen drug abuse that ?Approximately one in five teenagers has abused a prescription painkiller to get high and one in 11 has abused OTC products like cough medicine.? 

            The Internet gives teens easy access to the drugs they want. Teens avidly use chat rooms, message boards and e-mail, and these modes of communication are also being used to arrange drug sales, advertise online pharmacies and to share information on drug use. There are also many sites online that offer recipes, ingredients, and locations to purchase ingredients to make illegal drugs.  Legitimate online pharmacies, including many drugstore chains such as CVS and Walgreens which do require a valid ID and a faxed or mailed prescription from a licensed doctor who has seen the patient in-person, do exist. However, ?rogue? pharmacies only require a valid credit card to order and in most cases the patient has never seen a doctor or received a written prescription. Many of these unregulated ?pills for profit? pharmacies operate outside the U.S. and ship their goods in deceptively marked packaging to avoid detection by customs officials.

            The government is actively seeking to solve the problem of unregulated sales of prescription drugs online. In 2001, a California teenager, Ryan Haight, died when he overdosed on Vicodin pills which he purchased on the Internet without a valid prescription. As a result, the Ryan Haight Internet Pharmacy Consumer Protection Act of 2005 has been introduced to the House of Representatives. The Act regulates the online pharmacies.

            There are measures you can take as a parent or responsible adult. Watch the history of sites that your child visits. Limit the purchases your child makes with your credit card or with online accounts. Watch your credit card statements for evidence of illicit purchases and be aware of packages being delivered to your home.

            If you suspect a site is illegal, you can report it to the FDA by calling 1-877-RxAbuse.

Lisa Cunningham
i-SAFE Outreach
http://www.isafe.org/



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


Journal: Oct. 26, 2001 - Of Gods and Terrorists
 

Re-inventing ourselves is probably our most potent ammunition against the relentless difficulties of life.  As if by constantly changing our persona, we present a moving target to the terrorists of aging, illness, accident, bad luck, familial heartache, cupids with poor aim, and even worse judgment.  The gods must be amused in a gently condescending way at our pathetic attempts to wrestle meaning from our daily struggles - the way it?s kind of funny to watch a baby try to feed itself with a spoon and fail miserably.  We say that we have learned something from the whole miserable experience, that we have changed, that we are better for it  that we are a new person. And so we trumpet our fresh powerful identity, perhaps unwisely.  Make no mistake (as the saying goes these days), the terrorists are not fools; if we stay in that new place too long, and especially if we announce it too loudly, they find us again.  These terrorists of daily life know how to mutate, too.  They are harsh, unrelenting and they take no prisoners.  We have to reinvent ourselves just to survive.  We must be careful not to judge our fellow freedom fighters, exiled in the desert like David from Saul, as they awkwardly and selectively remember their past, redefine their present and imagine their future. They are, just like us, trying to elude the terrorists assigned to them since the beginning of time. It?s not easy being human when the gods are capricious and the terrorists wily.
 

Suffering isn?t ennobling; recovery is.
Christian Barnard



Journal: Late Fall, 2001 - Why I?m Not Afraid

I was at my parent?s home in Maine, laid low by illness and car troubles, when I saw the news.  No different than the rest of us, I was mesmerized, hypnotized, horrified - I could not turn the TV off - I, who went days without turning it on, kept my nearly deaf father awake, waiting for word of survivors.  Then, it began to dawn on all of us that there was to be no more good news from ground zero, and that even in Maine, that haven of disaffected hippies and decent men who come from a long line of honorable hunters, we were not safe.  And everyone started writing and talking about being afraid.  Afraid of flying, afraid of people with turbans or certain names (was it all that long ago, in America - Land of the Free, Home of the Brave - that signs in storefronts said, ?------?  need not apply).  But, I digress.

 My problem was, I was not afraid.  And although I was profoundly disturbed by what I saw, I was not afraid.  You see, for the last year and a half I have been living with cancer and fighting the ravages of radiation as I lost my voice and struggled to breathe. I knew what it was like to feel the earth shake beneath your feet, to question every step you took, to see your world change before your eyes, to know that you were singled out for some kind of test?but I was not afraid of these terrorists.  I don?t feel like I have faced down death in my personal battle, not yet anyway,  but I have faced the kind of life altering change that makes even the most complacent sit up and pay attention.  Unfortunately, I already knew how to go on when your world tilts at a stomach churning angle and then, unbelievably, stays there.  First thing, you redefine your family and friends.  You would be surprised by who comes out of the woodwork with a hug and a casserole when things get rough.  Count on them.  Let them take care of you?it?s as important for them as it for you.

 Cancer like mine is not unlike terrorism; it is rare (sub-glottic adenoid cystic carcinoma, specifically), until now, relatively unknown in this site and insidious?meaning, expect it to come back but we don?t know where or when?be on alert.  Other than that, just go living.  For reasons I do not understand, that is easier than you might expect.  Just like you who have decided to fly again and open your mail again and engage in friendly conversations with foreigners, I have decided to go on living, as hazardous as it is?it beats the alternative.
 
I am not afraid, not because I have cancer, but because I am alive in spite of cancer?just like all the other survivors, although I am tired of the word, sometimes it just seems right?we are tired and sore and sorry and we have to admit, we survived.

The thing is, we are not special, it?s just that we understand, really understand, what it?s like to have your world collapse.

Present:

I have a confession- sometimes as a writer, you put stuff down which is terribly important at that moment, but, in retrospect, it?s ka-ka.  It was exactly how you felt then but it just doesn?t ?stand the test of time?.  My above entry is not in that category.  Every time I re-read it I am taken back not only to that awful time in our collective experience, but to my own personal confrontation with the randomness of ?bad things?.

 I have a dear friend who says she ?earned" her cancer because of her many years of smoking and drinking.  I beg to differ.  I have another friend who has smoked and drunk for many years to no adverse affects but whose back has betrayed her for no identifiable reason.  When I was first diagnosed with throat cancer, I was horrified.  My first question to my wonderful doctor (he looks like a hip Captain Kangaroo) was, ?Is this because of my bad girl years after my divorce??  I didn?t start smoking until I was 30 and even then my smoking friends were amazed at how easily I could abandon it during the week. I hadn?t had a cigarette for years when I started having breathing problems.  Captain Kangaroo said it had nothing to do with smoking and everything to do with bad luck and wayward genes.

The terrorists are everywhere - this is not about ideology or bad genes.  It is about the human condition. Call it fate or luck or God?s mercy, I suspect that all of us have put ourselves in harm?s way at some point in our lives and managed to escape the consequences.  By the same token, sometimes the most ordinary and seemingly safe action can lead to tragedy?like, most recently, getting on a bus on one?s way to work. 

My own personal terrorist has planted a time bomb in my body no one can see. And I know ?IF? it detonates, it will take out more than me.  It will hurt a loving family and network of friends.  I am not being morose.  I am facing the fact that cancer is not an easy opponent and should never be underestimated. We are all in a battle against a wily and largely unknown adversary.  Yet we do go on - we find new courage and resolve daily. We find new reasons to laugh and hope and plan for the future.  We don?t let this enemy defeat us.  We fight back, hopefully in ways that are not only empowering to ourselves but inspirational and illuminating to those around us. 


                          Dutch's Bits, Buts, & Bytes

(1)
What is the Internet Public Library?

The IPL is an online library of and for the Internet community.  It's an experiment to discover the unique hybrid of librarianship and the Internet.  It's mission is to provide services and information which enhance the value of the Internet to its varied community of users. You can find it online here:

   IPL - http://ipl.sils.umich.edu

Welcome to the IPL Lobby

Every good library has a lobby - a place where one can contemplate the riches the lie just beyond the uhh... lobby.  In the small town where I grew up, the lobby was better known as "the hallway".  While in this hallowed place, you could wipe your feet on the fraying rug, visit the bathroom or proceed to the library proper.  The Lobby at the Internet Public Library is kind of the same, except they don't have a rug or a bathroom.  But let's see what we can find here to make up for the lack of these amenities.

From the Lobby, you can access the following divisions of the IPL:

  - Subject Collections (Arts, Business, Education, Science, etc.)
  - Ready Reference (Almanacs, Calendars, Dictionaries)
  - Reading Room (Books, Magazines & Newspapers)
  - KidSpace and TeenSpace
  - Searching Tools

The Subject Collections

Let's take a peek at some of the subject collections, which have links to selected documents which the IPL Reference Staff has found to be of high quality and content. You can find information on:

  Business, Computers, Education, Entertainment, Government,
  Health, Government, Science and more.

  IPL Collections - http://ipl.sils.umich.edu/div/subject/

You can also search each collection by keywords.  I checked out the Computer section and found the "Free Online Dictionary of Computing". In the words of its creator: "The FOLDOC is a searchable dictionary of acronyms, jargon, programming languages, tools, architectures, operating systems, networking, theory, mathematics, telecomms, institutions, companies, projects, history, in fact anything to do with computing."  Yes, but does it come with free steak knives?

  FOLDOC -  http://foldoc.doc.ic.ac.uk/foldoc/index.html

OK, let's try a search on "national anthem etiquette".  Hmmm, 1343 hits to explore, a bit overwhelming.  How about "astronomy"?  That's better, just 73 hits.   From here, you can check out "The Astronomy Cafe" or "StarDate Online" at your leisure.  If you get stuck, you can even send a question to the IPL staff by filling out a form at the Contact Us link.  But you should read the submission guidelines before sending questions. They probably won't be able to help you with your calculus homework.

Kids Only

Alright, we're checking ID here.  But this time you have to be UNDER 21 to get in, or at least lie about your age - which is pretty easy to do in cyberspace.

   IPL KidSpace - http://ipl.sils.umich.edu/div/kidspace/

You'll find Culture Quest, Story Hour, Science Fair project ideas, a Learning HTML guide, and special Subject Collections with links to materials on Computers, Nutrition, Math & Science, Art, Music and Sports -- all selected to be age-appropriate for pre-teens.

Read Any Good Books Lately?

No?  Then by all means pop into Reading Room at the IPL. The reading room contains links you can browse for hours of online reading.

   IPL Reading Room - http://ipl.sils.umich.edu/div/reading/

Visit the Shakespeare shelf, or check into the various catalogs of online books, such as:

  * Alex: A Catalogue of Electronic Texts on the Internet
    http://www.infomotions.com/alex/

  * The English Server Drama Collection
    http://eserver.org/drama/

  * The Internet Classics Archive
    http://classics.mit.edu/

That should keep you in digital ink for a while.  Hope you have a good visit!

(2)  Question: My computer is running Windows XP.  I cannot seem to open zip files.  On other computers I have worked with that have XP installed, a zip file shows up as a folder with a zipper on it.  I can double-click that folder and see the files in the archive.  How can I make this happen on my own PC?

Answer: Windows XP has the ability to manage compressed files known as zip files, and this ability is built into the operating system.  This alleviates the need to use programs like WinZip or other third-party applications.  If it is not working on your machine, you can correct this by restoring the compressed file association with XP.  Click on Start and then Run.  In the Run box type in:
  "
regsvr32 %windir%\system32\zipfldr.dll "
and you will then be able to work with zip files just like on the other XP machines you use.

 

   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) ...

BLISS NINNY

Bliss Ninny doesn't understand why people just can't get along.  While it is entirely
unintentional, Bliss Ninny's utterly vacuous comments can drive the more
pugnacious Warriors into a frenzy of aggression.  Often in the heat of battle
Bliss Ninny will discuss her cat.

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 17 new members who joined us during July 2005:

Robert Billings
San Dimas, CA
John Bramall
Hedben Bridge, Yorkshire, UK
Thomas Brennan
Dorset, VT
Sidney Cronier
Pascagoula, MS
Chris Ewen
New Westminster, BC, Canada
 Donna Gochanour - Caregiver
Newcastle, WY
Kelly Hood - SLP
Middleburg, FL
Becky McNamara - Caregiver
Somerville, TN
Brett Mountney
Devonport, Tasmania
Lucienne Mullins
Glen Burnie, MD
Jennifer Musiol - Caregiver
Chicago, IL
Laurie Myers - Caregiver
Denver, CO
Kathleen Randell - Caregiver  
Voorhees, NJ
Nancy Secrest - Caregiver
Powell, OH
Larry Smyth
Cambridge, Ont., Canada
Mary Speiden
Greenbelt, MD
Blackie Van Patten
Rancho Palos Verdes, 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............V.P.-Web Information
  Terry Duga.........V.P.-Finance and Admin.
  Libby Fitzgerald.....V.P.-Member Services
  Dutch Helms...........................Webmaster
      

  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   

 

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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.



As a charitable organization, as described in IRS § 501(c)(3), the WebWhispers Nu-Voice Club
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