December 2005



 

Name Of Column Author Title Article Type
Musings From The President Murray Allan Murray Allan, WW President News & Events
VoicePoints Dr. Jeff Searl Female TE  Speaker Education-Med
News You Can Use Scott Bachman Safety Tips -Shopping Education 
Living the Lary Lifestyle          Joan G. Burnside. Chapter 10 Education-Med
News Views & Plain Talk Pat Sanders MAs & PDPs Experiences
Between Friends Donna McGary The Eighth Deadly Sin 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
Murray Allan, WebWhispers President

     This is a hijacked column.  It is normally known as Murray's Mumbles and always contains Musings from the President.  Since Murray has been profiling each of the other EC members, it is only fair that the tables are turned this month -- so this is an interview with Murray.

     After High School in Victoria, British Columbia, which is on Vancouver Island, Murray  worked on a ship in the engine room and they went back and forth to ALASKA!  Now we can understand why he is not wildly enthusiastic about going on cruises in those waters.

     The Korean war was on and, being a loyal young man, he joined the Royal Canadian Air Force.  He said he had hopes of going there and becoming a HERO!  Alas, the war soon ended and Murray was sent to Germany as a Military Policeman.  Following that tour, he was sent to Carleton University to study criminology and then graduated from the Royal Canadian Mounted Police (RCMP) Staff College.  He was an officer with the Special Investigation Unit and served in Germany during the 'Cold War'.  When asked what he did there, he said, "I could tell you but then I'd have to kill you!!"  :-) OLD JOKE!!!

     After 25 years, he retired and went to work as a security manager for a multi-national company (ITT) in NYC, where his beat was Canada.  He traveled constantly as he was responsible for the safety and security within their 28 companies from coast to coast and occasionally did some investigative work in Europe and the Far East.

     Retiring after 12 years with ITT, he formed his own Investigation Company and had lots of fun chasing wayward husbands AND wives and catching folks with their hands in the cookie jar.  But that's another story that maybe we can get him to talk about one of these days.

     About his cancer, Murray commented, "I developed the classic symptoms of cancer of the larynx when I was 63.5 years old.  This is the exact age that I had read that males develop this disease.  So, lucky me, I was a statistician's dream come true.  I received the obligatory 25 treatments of radiotherapy and was absolutely assured by the radiation oncologist that my problems were over.  WRONG!  Shortly after having my neck fried like an onion ring my voice left me never to return.  I had a laryngectomy, TEP puncture and a myotomy in one fell swoop. They don't fool around in Canada because the surgeon's fee structure makes doing it all at once beneficial to all."

     "While lying in my bed in Vancouver General Hospital in August 1998 I had ample time to think of my future with a hole in my neck and no voice box.  What to do?  I was retired now so I could lay around and feel sorry for myself or I could help others with a similar problem.  I chose the latter."
 
     He was most motivated by his wife, June.  They had met in Hawaii on vacation 20 years before and ironically, they found they lived in the same city.  Murray says, "I had a lot to live for and June was the main reason.  She was and is a superb caregiver and has taken a great interest in laryngectomy issues.  She loves to meet the people in WebWhispers and the IAL.  She has an infectious personality and people take to her naturally. I'm a very lucky person!"


     "I do very much enjoy the opportunity to meet fellow larys and the friendship that accompanies it.  My favorite thing is visitation.  When they are lying in bed, speechless, and as I talk away to them, their eyes light up.  I love to see it when they start to believe that all is not lost.  I assure them they will be doing the same thing shortly.  And being able to encourage new laryngectomees is my own greatest motivator when I occasionally get down in the dumps and wonder WHY did this have to happen to me?  It doesn't matter why it happened.  It did, and we have to get on with our lives and live every day to its fullest.  And that is absolutely what it?s all about."

     Murray became President of the New Voice Club of Greater Vancouver shortly after his hospital stay and had a great deal to do with the growth of that organization.  He joined WebWhispers in December 1998, came to his first IAL in 1999, where he met many of his fellow WW members.  Just prior to the 2000 IAL meeting, he was serving as the Vice President of WebWhispers when the WW President, Carter Cooper, died unexpectedly.  Murray became the President and he has been our steady leader ever since.

     Through the late George Ackerman, a fellow Canadian and then President of the IAL, Murray was urged to get involved with the IAL.  He did become a member of the IAL Board of Directors and serves now as Vice President.

     One last thought from Murray about something that bothered him greatly after having cancer.  He is not allowed to donate blood anymore (Canadian rules).  He had donated over 170 pints and in 1996 he received a really nice award from the Governor General of Canada for these donations.

     Murray said that it has been a great honor to meet his WebWhispers buddies, Dutch, Pat, Terry and Libby, and working with them is a tremendous privilege.

     We have been fortunate to have a thoughtful, caring, and dynamic person like Murray to have served all laryngectomees in our own group, as well as locally and Internationally.
 

     Happy Holidays from all of your WebWhispers officers to all of our membership.

     Put together by column hijackers and WotW editorial staff, Pat and Dutch
.   


 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

Special Considerations Regarding the Voices of
Female Tracheo-Esophageal Speakers
Dr. Jeff  Searl

            It is well documented that all three of the main alaryngeal voice options - tracheoesophageal (TE), artificial larynx (AL) and esophageal (ES) speech - are perceived as different from a speaker who still has their larynx. In some instances, these changes have the potential to distract the listener and interfere with communication. In other instances, the voice changes may affect how the listener perceives the alaryngeal speaker as a person. This article deals with this latter issue specifically as it relates to how listeners perceive the gender and degree of masculinity and femininity of TE speakers.

           TE speech is often perceived as low pitched and hoarse (the same is true for ES speakers). In speakers with a larynx, lower pitch and hoarseness are usually associated with listener perceiving a speaker as male rather than female. On the other hand, higher pitch and clearer voice quality with less hoarseness and perhaps increased breathiness are more often associated with listeners perceiving a speaker as female. The changes that occur with TE voice usage, place the female TE speakers at an increased risk of being perceived as male if the listener is unable to see them (such as talking on the phone) or of being perceived as more masculine sounding, even if the listener is able to see them.

            A lowering of pitch and a change in voice quality toward more hoarseness are expected to occur for both male and female TE speakers. However, because low pitch and rougher voice quality are associated with being a male speaker, the TE speech changes are not likely to result in listener confusion of the male TE speaker's gender. However, with the notable drop in pitch and the marked voice quality change experienced by female TE speakers, they run the risk of being misperceived as male or at least as being perceived as a more masculine sounding female.

          There is very little research data available on this topic for TE speakers, although I and a colleague (Larry Small) published a paper in 2002 that described this phenomenon. In that study, listeners were able to accurately identify a TE speaker's gender at a high rate that was comparable for males and females. However, female TE speakers, despite being accurately identified as female, were often rated as masculine sounding (male TE speakers were never rated as sounding feminine in our study). Clinically, female TE speakers have periodically commented to me about the sounds of their voices with an expressed desire for something that sounded more feminine. Granted, these comments generally are preceded by a disclaimer that they are happy with how strong their voice is and how well others understand what they are saying. In that respect, the issue of feminizing the TE voice might be viewed as an issue that is addressed perhaps when other more basic issues in communication have been taken care of (i.e., generating consistent voice, maximizing intelligibility, etc.). Nonetheless, for some female TE speakers this can be a primary concern.             There has been more discussion of how listeners perceive ES speakers gender (Jim Shanks wrote a nice summary of this issue in a book edited by Robert Keith and Frederic Darley  called Larygnectomy Rehabilitation, published in 1994). Much of this research found the same as what we found in our study of TE speakers. Listeners can generally identify the ES speakers gender, but female ES speakers are rated by listeners as being a more masculine sounding than female. Fortunately, there may be several avenues for trying to feminize TE communication. Some of these are directly related to manipulating the voice, others are focused on linguistic issues, and still others deal with visual aspects of communication. Voice Manipulations.  The pitch of the voice does serve as a primary cue that helps identify a speaker as either male or female. There is no magical cut-off in the pitch that separates male and female voices, but if we measured the voices of non-laryngectomized speakers, we usually expect a male voice to be at about 100-125 Hz (Hz stands for Hertz, which is the acoustic measure we use that generally corresponds to the pitch that a person hears) and a female voice to be at about 200-250Hz. If we measure the Hz of female TE speakers, the range of values is usually in the 140-200 Hz range, although certainly there are exceptions. From a voice rehabilitation perspective, it may benefit the female TE speech " thinking higher" while reading sentences and conversing, some TE speakers can habituate use of a higher pitched voice. For others, a slight tensing of the neck muscles has been suggested. Some caution is in order here as extra neck tension is generally not a target in TE speech training because it can interfere with getting smooth and prolonged TE voicing. For this reason, I wouldn?t suggest trying this until the person had been using TE voice proficiently for an extended period of time and until I had confidence that they could proceed to some voice "refinement" attempts without trouble. Another suggestion would be to play around with the force of the exhalation during voicing. Greater airflow through the prosthesis and the upper esophagus could favorably alter the vibration of the pharyngo-esophageal segment (or PE segment; this is the tissue at the top of the esophagus that vibrates to produce voice) such that a faster vibration, and therefore a higher pitch, occurs. Again, there is a caution that increasing the force of expiration could also increase the tension of the PE segment, cutting off the voice, so it must be done with some caution and only with already proficient speakers. A final thought is that for some speakers, slight changes in the position of the head or neck could alter how the PE segment vibrates. A slight chin retraction, turn of the head, or other repositioning can be explored to see if there are favorable changes in pitch.  Besides attempting to increase the pitch of the voice overall, it may be worthwhile to increase the variation in the pitch of the voice during a phrase or sentence. In non-laryngectomee speakers, females tend to use greater upward and downward inflections in pitch. Drills that have a person producing phrases with predetermined pitch inflections and stress patterning could be useful to help emphasize this ability post laryngectomy. Other means of increasing pitch inflection, that have been suggested for ES speakers also, could include reading of stories and poems with attempts at exaggerated inflection, practice in singing songs, or even isolated work on sustaining a vowel with either rising or falling inflection (although my preference is to do such work with words and phrases). Contrastive stress drills would fit nicely with this line of work. In this drill the speaker is asked to say a phrase (e.g., Paul likes Katie) in response to various questions from a communication partner or speech therapist. The therapist asks, "Does Jim like Katie"? and the answer would be, "No, Paul likes Katie." The therapist can ask, "Does Paul like Mary"? "Does Paul hate Katie"? etc. One could also use a set phrase such as "Paul likes Katie" and practice producing it as either a statement or a question, the later requiring a rising intonation at the end. Alternatively, the speaker could practice reading the sentence with various emotions intended (happy vs sad vs surprised vs etc.).            Reducing the degree of hoarseness or strain in the voice also might be targeted if the goal is to increase the femininity of the voice. This may not be possible with all female TE speakers. However, as with pitch manipulations, alterations to head position, neck muscle tension, and force expiration might all have some impact on the voice quality and so should be explored. In some cases where the PE segment is too tight, creating a strained voice, the TE speaker should work closely with their speech therapist and ENT to figure out why this might be occurring. In some cases, there may be a need to try to "loosen" this PE segment surgically or with an injection of medication. In other situations, working with a speech therapist on decreasing tension in the neck or altering respiratory effort may be needed. In other people, the PE segment is too loose and could vibrate in such a way that hoarseness and/or breathiness occurs. I did write above that non-laryngectomized female voices are characterized by greater breathiness than male voices. However, there is such a thing as too much breathiness. Slight pressure from a finger or two at just the right place on the neck might help the PE segment vibrate in such a way that the hoarseness and/or breathiness are reduced. The speech therapist can work on finding just the right spot on the neck to put the finger and determine how much pressure is needed.Linguistic Issues            Males and females use language differently. While I have not seen specific study of this in TE speakers, removing the larynx is not likely to eliminate these differences (or at least not all of them). Below are some of the ways the males and females differ in terms of how they produce and use language. These are taken from studies of non-laryngectomized speakers but may give us a starting point for thinking about how to emphasize a more feminine speaking style.            Linguistic traits more indicative of males include:greater use of non-personal pronouns (e.g., anybody, somebody as opposed to personal pronouns such as I, we, and you).
greater use of present tense verbs (e.g., walking as opposed to walked or will walk)
greater use of demonstrative or definite nouns (e.g., this, that , those)
greater use of active voice (e.g., Bob ate the cake, as opposed to, The cake was eaten by Bob)
greater use of vocalized pauses (e.g., "umm" "uh" between phrases, sentences or thoughts)
greater use of constructions conveying definitiveness and authority (e.g., can, will as opposed to may, might, etc.)
greater use of direct commands (e.g., Close the door, as opposed to, Will you close the door)
greater number of grammatical errors of all types relative to Standard American English
greater using of falling intonation patterns          Females do all of the above linguistic behaviors, but to a lesser extent than males. In addition, other linguistic traits, more characteristic of females, include:greater use of adverbs in general and intensive adverbs (e.g., very, truly, really) specifically
greater use of rhetorical questions (i.e., questions for which an answer is not expected)
more frequent reference to emotions (their own and others)
greater use of prepositional phrases (e.g., in, on, above, etc.)
longer length of sentences
greater use of reduplicated forms (e.g., teeny-tiny, itsy-bitsy)
greater use of emphatic forms (e.g., horrifying, spectacular)
greater use of "hedgers" (e.g., I think, you know, perhaps, sort of, etc.)
closer adherence to Standard American English rules and constructions          Just because a female undergoes a laryngectomy and begins to use TE speech does not mean that all of the tendencies noted above go away. However, it may serve that speaker well to overemphasize those types of linguistic behaviors that listeners more often associate with a female speaker and de-emphasize those associated with male speakers. This may be particularly true when the female TE speaker is not face-to-face with the person with whom they are talking. Some of this might occur through more general awareness of the need to sound more female, but specific practice using certain constructions or linguistic behaviors might be needed in some cases to help drive home the point and raise the speakers awareness level.
Visual and Other Aspects of Communication            Obviously, manipulation of visual aspects of communication provides a benefit only when the communication partner can see the TE speaker. In most instances, a listener is able to see a person and tell that they are a male or a female based on body shape, facial appearance, hair style, clothing, etc. The female TE speaker could take particular care to dress or appear even more feminine if they so chose. I do not have any specific evidence that this makes listener rate them as more feminine, but I suspect it would. Besides general appearance conveying greater femininity, there are other visual and physical factors that should be considered. Females tend to use more gestures and more facial expression than males. These behaviors can be further encouraged in female TE speakers. More physical touching of the communication partner (e.g., lightly touching the forearm or elbow) is also associated with females as is closer physical proximity to the communication partner (at least those who are female and/or known by the speaker). Again, these could be encouraged if the speaker is comfortable with it.            In situations wherein the listener cannot see the communication partner, particularly on the phone, I usually try having the female TE speaker introduce themselves by clearly stating their name to help the listener recognize that they are a woman. Granted, there are some names such as Pat and Chris that not specifically female or male. In these cases, they may have to make other more direct references appropriate to the situation that help (e.g., "Hi my name is Pat. My husband John".) or rely on characteristics of their speech and language to cue in the listener.

            For a given female TE speaker, a number of the issues identified above might deserve attention in the rehabilitation process. For others, only a few changes or points of emphasis might be needed to accomplish of the goal of being perceived as more feminine. It should be noted that a speech-pathologist could help in this training process, although it may not always be necessary. Some trial and error experimentation on the part of the TE speaker herself might go a long way in overcoming this issue. I would love to hear from any of you, particularly the women, if you have had to address this issue and what types of strategies you've found helpful.

BIBLIOGRAPHY

Andrews, M.L. & Schmidt, C.P. (1996). Gender presentation: Perceptual and acoustical analyses of voice. Journal of Voice, 11(3), 307-313.
Avery, J.D. & Liss, J.M. (1996). Acoustic characteristics of less-masculine-sounding male speech. Journal of the Acoustical Society of America, 99(6), 3738-3748.
Bloom, D., Zajac, D. & Titus, J. The influence of nasality of voice on sex-stereo-typed perceptions. Journal of Nonverbal Behavior, 23, 271-281.
Casper, J.K. & Colton, R.H. (1993). Clinical manual for laryngectomy and head/neck cancer rehabilitation. San Diego, CA: Singular Publishing Group, Inc.
Coats, J. (1993). Women, men and language. New York: Longman Publishing.
Gelfer, M.P. & Schofield, K.J. (2000). Comparison of acoustic and perceptual measures of voice in male-to-female transsexuals perceived as female versus those perceived as male. Journal of Voice, 14(1), 22-33.
Hanson, H. (1997). Glottal characteristics of female speakers: Acoustic correlates. Journal of the
Acoustical Society of America, 101,  466-481.
Haskell, J.A. (1987). Vocal self-perception: The other side of the equation. Journal of Voice, 1(2), 172-179.
Kapusta-Shemie, C. & Dromey, C. (1999). Acoustic and perceptual improvements in tracheoesophageal voice using a neck strap. Journal of Otolaryngology, 28(2), 102-104.
Kramer, C. (1977). Perceptions of female and male speech. Language and Speech, 20, 151-161.
Key, M. (1996). Male/female language. Baltimore, MD: Scarecrow Press, Inc.
Labov, W. (1972). Sociolinguistic patterns. Philadelphia: University of Philadelphia Press.
Linville, S.E. (1998). Acoustic correlates of perceived versus actual sexual orientation in men's speech. Folia Phoniatrica, 50, 35-48.
Most, T., Tobin, Y. & Mimran, R.C. (2000). Acoustic and perceptual characteristics of esophageal and tracheoesophageal speech production. Journal of Communication Disorders, 33(2), 165-180.
Mulac, A., Lundell, T. & Bradac, J. (1986). Male/female language differences. Communication
Monographs, 53, 117-129.
Mullenix, J.W., Johnson, K.A., Topcu-Durgun, M. & Farnsworth, L.M. (1995). The perceptual representation of voice gender. Journal of the Acoustical Society of America, 98(6), 3080-3095.
Murry, T. & Singh, S. (1980). Multidimensional analysis of male and female voices. Journal of
the Acoustical Society of America, 68, 1294-1300.
Shanks, J. (1986). Development of feminine voice and refinement of esophageal voice. In F.
Darley & R. Keith (Eds.), Laryngectomee rehabilitation, 2nd Edition (pp. 269-276). San Diego, CA: College-Hill Press.
Trudeau, M.D. & Qi, Y. (1990). Acoustic characteristics of female tracheoesophageal speech.
Journal of Speech and Hearing Disorders, 55, 244-250.
Weinberg, B. & Bennett, S. (1971). A study of talker sex recognition of esophageal voices.
Journal of Speech and Hearing Research, 14, 391-395.
Weinberg, B. & Bennett, S. (1972). Selected acoustic characteristics of esophageal speech produced by female laryngectomees. Journal of Speech and Hearing Research, 15, 211-216.



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

                                          

SAFETY TIPS FOR HOLIDAY SHOPPING
(AND ANY OTHER TIME FOR THAT MATTER!)

Please consider the following as guidelines when shopping this holiday season.   These observations are for the most part suggestions that I have offered and promoted as a police officer to many groups over the years.  Nothing is 100%.   However, as I have mentioned before, proper planning beats poor performance.  If you are prepared for an event you have a better than average chance of successfully overcoming it.

*  When heading out for an extended day of shopping it is good advice to let someone know where you will be and how long.  Carrying a cellular phone is also an important resource especially if you travel alone and/or have medical needs.

*  Don't flash the cash.  Use credit/debit cards whenever possible.  It not only creates less opportunity to lose your currency by accident or design but it also is an additional record of your purchase.

*  Going shopping does not necessarily mean one needs to look like a million dollars as it relates to jewelry.  Showing off those diamonds and rubies may attract unwanted attention.

*  Women who normally carry a pocketbook which may resemble a small piece of luggage may want to consider something else more practical and less likely to be stolen.  The less carried the better.  Bring only what you need when shopping.  Is more than one credit card necessary?  That credit card and your driver's license along with a small amount of cash are more easily carried in a pocket or small purse.  If you must carry a pocketbook there are pros and cons for the best method to do so.  If your pocketbook has a strap long enough to go over your shoulder and/or neck or if you carry it only around your neck please consider the following.  As much as it would seem that is the best way not to have your pocketbook taken from you quickly it also creates a substantial physical risk to you.  When the thief attempts to pull your pocketbook from you it will not be with care nor will they consider your age or other physical issues.  In fact if you are older, the better.  If that pocketbook is around your neck in any manner there is greater likelihood you may be pulled to the ground or knocked down when the pocketbook is pulled by the thief.  If the pocketbook is not "attached" to you it can be easily dropped as you run and seek assistance.  The risk of injury can be reduced if the thief gets what they want quickly.  If you followed the other suggestions about only carrying needed items on your person if a pocketbook is stolen the loss will not be as great.  The quicker the thief can get away the safer you will be.

*  Park and walk in well lit areas where other shoppers are coming and going.  Look for security vehicles, surveillance cameras and emergency phones as you are driving.

*  Scan your surroundings when entering or leaving a shopping area.  Know where you parked in relation to the entrance door you are using.  When walking to or from your vehicle notice if anyone is "shadowing" you.  If that be the case, move to an area where others may be or seek the assistance of security personnel.   Make eye contact with anyone you believe may be following you.  This not only aids in identification for a later time but it also puts someone suspicious on notice that now you know he/she is present. 

*  Do not carry so many packages that you risk the possibility of dropping one or leaving one on a store counter or floor somewhere. 

*  If you put your purchases in your vehicle and head back in for more consider what may be "advertised" to a possible thief.  Electronic items which are high dollar and easily pawned or sold are easy pickings.  If your vehicle is parked in a more remote location a theft may go unnoticed.

*  Be wary of strangers attempting to engage you in conversation when you are alone, especially on a parking lot.  One person may be enough of a threat.  More in a group spells trouble.

Shopping with a friend makes for good conversation but consider how much safer your spending spree will be with one.

*  Holidays bring out the best in us when it comes to donating to those in need. There is nothing wrong with providing money to organizations such as the Red Cross or Salvation Army if they are set up near shopping areas.  However, consider your safety when approached by an obvious panhandler.  Indeed there are many that are homeless and without jobs.  However, those who are looking for money to supply drug habits may create more issues.

*  Consider that we as laryngectomees are more vulnerable when it comes to vocally identifying an exigent situation.  As has been offered in many WebWhispers postings it is not a bad idea to always carry some type of device which will draw attention to you and perhaps ward off an attack.  Any device which loudly squeals, shrieks, rings and/or flashes will hopefully be of assistance.  If still in your vehicle honk the horn until someone comes to your aid.


 


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

 


CHAPTER TEN
Tips 91 through 100

Friday I tasted life. It was a vast morsel.
A Circus passed the house--
Still I feel the red in my mind
though the drums are out.
The lawn is full of south and the odors tangle,
and I hear today for the first time the river in the tree.
~Emily Dickinson~

 

TIP # 91: HOW TO GET TO SLEEP

When your mucus is bothering you, it helps to spray your stoma with saline before going to bed.  Do it about half an hour ahead to get the coughing out of the way.  Propping yourself up with extra pillows or other arrangements will help.  Some people permanently slant their beds or sleep sitting up.  And don't forget to use a humidifier.  One on each side of the bed is good at first.  If you're not using an HME (heat-moisture exchanger) yet, look forward to it.  Your SLP will help you.

JB's note:  I slept through the night for the first time after starting to use an HME.

TIP # 92: DON'T BE SCARED OF BLOODY MUCUS

Seeing blood in the mucus can be frightening.  It often happens during and after such events as a prosthesis change. The combination of cold weather and warm, dry houses or just dry weather also irritates the mucous membrane of your airway and can cause bleeding.  Keep your stoma moisturized with saline solution, drink a lot of water and humidify the house.  If it doesn't stop after a day or two or seems to be increasing, call or see the doctor.

JB's note:  Make your SLP happy.  They hate to mess up your white shirts with bloody mucus, so when you go in for a change of prosthesis, dress for the occasion.  The first time I discovered blood, I called the nurse, and she told me not to worry about it.  Then when I saw the doctor, I asked him.  He shrugged it off as some kind of irritation.  I hope this keeps you from worrying when it happens to you.

TIP # 93: TRY NEGATIVE PRACTICE

This is a good way to rid yourself of distracting behaviors.  You may have developed habits you thought were useful to you, but now are interfering with communication.  These could include rolling your eyes, twisting your head, tucking your chin in, or maneuvers to occlude your stoma and push in a sweet spot simultaneously.  You can work on any problems by doing it on purpose several times a day.  This will help you become aware of it during regular circumstances.  As you become more aware, you can stop doing it after you've started.  Eventually, you will be able to anticipate it, and prevent it from happening.  If it turns out that you cannot speak without the movement, ask your SLP for more guidance. 

JB's note:  This can also help you with your h sound.  Practice doing it the old way and the new way.  You will get a definite feel as to when you are doing it correctly or incorrectly.

TIP # 94: REDUCE YOUR SWELLING

It can take months for your swelling to go down, but it will happen.  If you keep snapshots in your book, you will see the differences in your face, even if you can't recognize them in the mirror!  However, you may have some swelling that would benefit from Manual Lymphatic Drainage (MLD) This is a massage that moves the lymphatic fluid from the swollen area into new pathways elsewhere in the body.  Although the term MLD has been appropriated by ordinary masseurs, make sure you get yours from an occupational or physical therapist, under the direction of a specialist doctor.  It should be approved by your surgeon beforehand, as there might be a reason for not doing it.  You may also receive a taping technique that appears to be very effective.

JB's note:  I had MLD after radiation, chemotherapy and a neck dissection.  It took about six weeks of daily therapy for my face to return to a fairly normal size, just in time for a partial, then a total laryngectomy!  After the total laryngectomy, the improvement just happened by itself.  TIP for the women:  Longer hair styles are a big help in disguising a misshapen and scarred neck. 

TIP # 95: ORGANIZE YOUR SUPPLIES

At some magic point, you will feel normal or almost so, considering.  But you may still have stacks and bags of things you haven't used in weeks, along with medications and maybe even boxes of adult formula.  If your stuff is not on display for the family and guests, you'll appear to be less the "patient" and more the real person you are.  Your daily needs will fit nicely into a drawer organizer or tray that you can keep on a shelf, set onto the table, and then easily put back between times.  Your stock of supplies for stoma and TEP maintenance will stow away easily into one of those little plastic chests of drawers. 

JB's note:  It's hard to throw away the things that should be put to good use, but it's harder to give it away.  I had a huge supply of adult formula that had been over-ordered to "get a rate."  Then my system couldn't tolerate it. I couldn't move the boxes, so I emptied the cans down the sink, a few at a time.  Eventually it all disappeared. (You might try having a friend drop it off at a Good Will or Salvation Army store..Ed.)


TIP # 96:  CELEBRATE ALL OF YOUR FIRSTS:

While you are measuring your recovery in months and years, be sure you're noting each time you make a discovery or can do something you haven't been able to do for awhile.  I hope you've been writing them in your notebook. Here's a list that's just partial and probably not in the order you would use. check them off if you'd like.
 
Got electrolarynx
Walked to end of driveway
Got two humidiers
Walked to end of block
Ordered clothes from a catalog
Walked 2 blocks and back
Drove 2 miles by self
Cooked soup and ate half
Rode to Cancer Clinic without choking
Stayed in a store more than 15 minutes without choking
Finished radiation (At MD Anderson, you get to ring a bell!)
Came through neck dissection OK-no cancer!
'Passed' Modified Barium Swallow test and 'cleared' for swallowing
Got prosthesis
'Voiced' with thumb over stoma.
Received Heat-Moisture Exchanger
Slept through the night
Answered the phone and was understood
Got on a plane
Put makeup on
Got a haircut
Took a vacation trip
Drank first cup of coffee
Ate pureed meat
Smelled supper without even trying
Wrote to WebWhispers
Got WebWhispers replies
Explained my printer problem to the computer salesman
Dried hair with hair dryer without hurting my ears
Bought a new outfit
Went to a movie
Visited with long, lost relative
Ate McDonalds breakfast
Ate grits
Drove 100 miles to cancer center by myself
Walked through clinic without having to push wheelchair
Registered for a state meeting
Got through the day without a nap`
Got rid of left over post-surgery supplies
Reorganized closet with only clothes that fit
Did own Christmas shopping
Went out to dinner
Went to a movie
Made dinner for family
Got hospital bill straightened out--took months!
Finished dental work--took months!
Got insurance reimbursement with vendor straightened out--took months!

SEE HOW FAR YOU'VE COME?  OR HOW FAR YOU'LL BE GOING?

TIP # 97:  GET A JOB

Larys are working as truck drivers, police officers, teachers, lawyers, professors, salespersons, public speakers, construction workers, domestic engineers, mechanics, jewelry makers, reporters, executives, ministers, administrators, cooks, antiques dealers, and speech language pathologists.  If needed, you can get information through your state government?s employment program.  They can put you in contact with the Department of Vocational Rehabilitation and many other resources.  AARP also offers employment information.

TIP # 98: CONTRIBUTE

Living the Lary lifestyle means giving back.  Larys visit patients in hospitals, conduct tobacco education classes in schools, educate health and emergency workers, volunteer in hospitals, and support rehabilitation for others through clubs.  This includes the online WebWhispers Nu-Voice Club.  Larys give back in other ways, too, in the same clubs they belonged to previously, in their churches and service clubs and with charitable contributions.

TIP # 99: GET OUT INTO LARY COUNTRY

Attend state or area conferences.  So far this year, meetings have been announced for Texas, Florida, New Jersey, Massachusetts and Missouri.  The meetings offer clinics for speaking and voice improvement, meeting professionals in the field, seeing new products, listening to outstanding speakers, talking to your peers, and sometimes introducing SLPs and graduate students to the possibilities of laryngectomee rehabilitation.  You can find announcements of meetings on WebWhispers and the International Association of Laryngectomees (IAL) website.

TIP # 100:  GO GLOBAL

The International Association of Laryngectomees annual meetings are to be held in Boston in 2005 and Chicago in 2006 (changed from Biloxi after the hurricanes).  A Voice Institute is held to train speech-language pathologists and to help Larys. The many activities include lectures, meetings, vendors, meals, banquets, entertainment and even a swimming demonstration!

If you want to literally explore the wider world, you can join the annual WebWhispers cruise.  In 2004 it went through the Panama Canal.  In 2005, it went  up the east coast of the U.S. and Canada.  Besides the fun cruise activities, there are more opportunities for voice improvement and interaction with SLPs and other professionals.

JB's note:  I'm looking forward to several annual events, starting with the Texas meeting and definitely including the IAL and and maybe I'll go on one of the cruises.

LET'S TALK

How are you sleeping?  Have you tried "negative practice" to improve your communication?  Do you still have swelling that should be gone by now, and have you asked your doctor about it? How about getting rid of the sickroom supplies?  Is it still too early or have you already gotten the house back to normal?  Have you heard "the river in the tree" yet?  Write, draw, glue or staple in your notebook.  You'll be glad you did.

AFTERWORD

Congratulations on reading all 100 TIPs!  I hope you will review the tips many times as you move through your new life, and that you will be adding to your "Let's Talk" pages as you recover.  Better yet, I hope you will have started your own book and will send new tips to WebWhispers.org because life will have become good again in ways that you weren't even able to imagine when you started this journey. 

I would appreciate any suggestions, new tips or questions you may have for the next edition.  You can reach me via e-mail at: joanburnside@verizon.net

Joan Burnside


ACKNOWLEDGEMENTS
WebWhispers, Herb Simon, Linda Palucci, Sydney Gartenberg, Terry Duga, Dave Greiwe, Judy Greiwe, Ellen Heyniger, Pat Wertz Sanders, Janna Eyer, Patrice Bloom, Jane Varner, Laurence Moss, Paulette Lynn, Ian Currie, Michael Csapo, Murray Allen, Donna Kehm, Phillip Clemmons, George Cocking, Bob Halterman, Phil LeGrand, Elinor Ripley, Maggie May Brodie, JoAnne Beecher, Jim Rice, Carl Strand, Robert Robinson, Scott Bachman, Kimberly Lagmin, Leslie Quong and numerous others who preserve their anonymity through pen names.  Special thanks to Dutch Helms, Founder and Webmaster
of WebWhispers.

The MD Anderson Cancer Clinic and Hospital, Head and Neck Center:    Dr. Jeffrey Meyers, Jodie Knott, Julie Leon, Annette May, Dr. Jan Lewin, Sharon Jamison.

The Author's Family: Ellen M. Ritter, Kurt Ritter, Valerie Ritter, Geoffrey Heeren.


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

MAs & PDPs

The new Prescription Drug Plans are really hot in the news right now.  It is time to sign up and you do have a limited time to do so before that rates would rise for you.  If you are undecided about which plan, don't wait too late to sign up for something because you will be given the opportunity to change to a different plan after a year with no penalty.  I have heard the suggestion several times to just take the cheapest one if you don't know what to do.  That can work but, if you have a Medicare Supplement (Medigap), then why not sign up for their plan.  If it turns out to be a poor one, you can change.

Since I have Medicare, plus AARP Supplement through United Health Care, I looked over other plans but decided I would reduce the number of companies I deal with if I chose the AARP PDP plan, also managed by United Health.  It is $27.28 per month, will start right away on Jan 1, 2006 and has no deductible. They will take it out of my Social Security check. (My SS raise will never see the light of day!).  As with most of the plans, the drug co-payments are tiered.  These are $5, $28, $55 and I need to look at the formulary to see how much co-pay each drug will cost.

http://www.medicare.gov is the Medicare site and the very first page gives you a multitude of directions to go to learn more about these plans.  It looks more overpowering than it is.  Take it one step at a time and you can always come back and start over.

First, those who are not sure what they may qualify for in assistance would be wise to fill in the questionnaire that you will find under BenefitsCheckUpRX .  They do not ask for your name or address.  This is just to direct you to programs that might be of help financially IF you qualify.  At the end of filling in the questions, they will give you a results page that you can print out.  There is also an application where you can get more specific information.

Going back to the home page of the Medicare site,  To look at the plans you would have to chose from, click on Landscape of Local Plans

This is how to get to lists all of plans available in your area for cost, coverage and other information.
 
This is your first step in understanding the kind of plan.  You will need to choose between a Stand Alone Plan if you have no Prescription coverage with your regular Medicare and Supplement.  I have the original Medicare Plan and have no coverage now. You can choose to read about that..  If you have an HMO or PPO, you need to read that section.

Then:

To start, select your state from the list and choose under  Medicare Advantage (MA) Cost Plans or Stand-Alone Prescription Drug Plan (PDP) Organizations.  A chart will download in PDF format and you might want to print it out to study.

In Alabama, where I live, there are 14 MA type plans detailed and 1 page of listings under PDP plans.

Each plan has a drug listing, called a formulary, and you may look for Formulary Finder back on the home page of Medicare, where we started.

I can tell you that you will co-pay the lesser amount with many of the generics and that your druggist is going to have to help you with suggestions of which drugs might be the same for a lesser price on your particular plan.

Most of these plans do have the gap in coverage.  The few that do not have a higher rate each month.  Look over the charts, discuss it with your druggist who knows what drugs you take.

I just wanted to get you started on a site that has answers for most of your questions.  Hope this is of help to you.  I read this over and went to the AARP site to print out their application for PDP coverage.  You may choose a different plan than you have with your Medigap.

Good Luck!



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


The Eighth Deadly Sin

It has been said that confession is good for the soul.  I think that depends on what you are confessing and to whom.  Confession can be surprisingly self-indulgent and destructive. Nevertheless, I have a confession.  I have been feeling sorry for myself.  I have had a bout of a mysterious ailment which resulted in severe, nearly constant, neck pain for several weeks.  It was the pain that sent me down that slippery slide into what I consider the 8th deadly sin - self-pity.  This is a nasty and insidious moral virus (not unlike cancer when you think about it) which can slip in and out of your psyche.  It is the stealth bomber of sins.  It can sneak in and justify itself in the wink of an eye or a twinge of pain.  It must be resisted but its siren song is so tempting.  Self-pity absolves you of all guilt and responsibility.  You say to yourself, "This is not my fault."

I thought I was wise to this vice, that I was brave and proud and defiant.  I had accepted my fate and rose to the challenge.  I was a fool.  Self-pity had already started its cunning infiltration.  You would never know it looking at me. I carried on quite well.  But I was beaten down.  My family and friends think it was the radiation that destroyed my health.  I know it was the battering of my hope that did me in.

Hope is such a quirky little emotion.  I think it is like a pilot light for all the other bigger, weightier emotions  determination, courage, perseverance, vision.  Without hope, they have neither heat, nor power. Hope is the spark which fuels our dreams and ambitions.  And even just a flicker of hope can keep despair at bay. 

Self-pity is the enemy of hope. Self-pity undermines hope, not by denying its power but by denying its power for us.  It's all well and good for you to have hope because you are going to get better.  It's just fine and dandy for you to have hope because your dreams aren't constantly getting dashed.  It is understandable, commendable even for you to hope because your aspirations are attainable.  But not for me.  My pain is unique.  My suffering has no equal.  And, then, the coup de grace - why even bother?

Put that way, self-pity is such an insufferably self-important little prig, it seems unlikely anyone would take it seriously.  But, of course, it is usually a good deal more subtle when it marches around inside our heads.  It has several very close cousins. 

The Martyr - for whom suffering is ennobling, especially if everyone else is exquisitely aware of the depth of my sacrifice for you. 

The Commiserator - who can match your every detail with one just a bit more painful?of my own, of course.  And while I truly sympathize with your plight, my own sad story is just that much more tragic.  For the skillful practitioner, this can segue right into the Martyr winning the self-pity sweepstakes.

Even if we manage to avoid or at least escape those odious companions, any encounter with self-pity can leave us weakened and vulnerable.  Self-pity is the ultimate justifier of all the other deadly sins. 

The Seven Deadly Sins, as we know them today: Pride, Envy, Gluttony, Lust, Anger, Greed and Sloth have evolved over time.  The first record of them appears to be from Greek monastic theologian, Evagrious of Pontus, who listed "eight offenses and wicked humans passions".  This list was changed to "seven deadly sins" by Pope Gregory in the sixth century and further amended by later theologians including St. Thomas Aquinas. [For this and other information on this subject, just Google  "Seven Deadly Sins"]

There is also a link to a more modern adaptation of the deadly seven by Gandhi. 

Wealth without Work
Pleasure without Conscience
Science without Humanity
Knowledge without Character
Politics without Principle
Commerce without Morality
Worship without Sacrifice.

This is all powerful stuff and makes me painfully aware of the triviality of whining about my own little miseries.  And that, my friends, is exactly my point.  Self pity excuses all our bad behaviors.  We should not be blamed because of our lot in life.  It's OK for me to be angry and jealous and lazy - you would too, if you were in my shoes.  It's OK for me to be self-indulgent and grasping - I deserve it after all I have been through.  Thankfully most of us do not wallow in that mire, but we certainly have seen it around us and, if we are honest, even inside us from time to time.  Like I said, it is sneaky and insidious and must be resisted.

Which is why I think it should be added to the list.  So with apologies to Gandhi, I humbly submit the 8
th Deadly Sin -  Entitlement without Effort - or in the modern vernacular, No Pain- No Gain.  It is really quite simple. Life is unfair and fraught with difficulties - for everyone.  That seems to Gandhi's point that struggle is inherent in the quest for that which is good and true.  Feeling sorry for oneself is absolutely the least productive way of dealing with that reality.

This holiday season seems like a particularly appropriate time to practice what I preach, so I am making a early resolution to be vigilant against that nasty little bugger and tenderly protective of that pretty little flicker of light that represents hope. 

Peace to you all and best wishes for hopeful and happy holidays!

Love, Donna


                     Dutch's Bits, Buts, & Bytes
 

(1) Internet Becomes Central To Our Lives And Economy
 
     A U.S. Census Bureau report of computer and Internet usage, based on 2003 data, was released last month and showed the Web has become integral to both our daily lives and the economy.  According to the study, 40% of U.S. adults used the Web to obtain news, weather, or sports information -- up from 7% who surfed the Web in 1997, when the Bureau conducted a similar study.  47% used the Web to find information on products or services and about one-third purchased a product or service -- compared with only 2% who did so in 1997.

     Demographics effected the rates of usage.  For example, households in the western USA were more likely to have access to the Web than those in southern states.  Alaska ranked the highest with nearly 70%; Mississippi the lowest with fewer than 40%.  In 2003, about 68% of Asian households and 60% of white households had Web access, while only about 36% of each black and Hispanic households had it.  92% of U.S. families with an annual income of $100,000 or more had Internet access, compared to 31% of families with incomes of $25,000 or less.  Email use has also exploded between 1997 and 2003.  More than 55% of adults used Email in 2003, compared to 12% in 1997.
 
     Analyst reports done this year show Web usage has grown considerably since 2003 and continues to do so.  Predictions show that broadband Internet access alone will more than double this decade, reaching 71 million U.S. households in 2010.  In 2004, 39.5 million U.S. households shopped online - 3.5 million more than in 2003.  Researchers say that broadband, laptop, and home networking adoption will help drive online research and purchasing to more than 55 million households by 2010.

     I guess the WEB is the current and future "PLACE TO BE!"
 
(2) Remote Access

     I carry a laptop when I travel, and I used to worry about forgetting to copy some important file from my desktop machine to the laptop.  I'd be in Reno or Dallas, but that darned MSWord "letter" file or the passwords to my online accounts were on my home computer, 30 minutes southeast of Houston.  It was very frustrating, but I found a solution.  Now I just find the closest Internet connection, log in to my home computer and I can access it remotely, just as if I were sitting right in front of it.  Find out how I do this without spending a dime:

     Yes, and you can do more than just access your files. There are several tools that allow you full access and remote control of your computer over the Internet.  If you have access to a computer with Internet access, you can log in to your home or office computer using a web browser.

     You can view the desktop and use the mouse or keyboard to launch programs, open files or play a game. It's just as if you were sitting in front of the remote computer.  If you're in the same room as the "remote" PC, you can watch the mouse cursor moving around on the screen, see new windows open and close, etc.  Tres cool!

     I like and use the "LogMeIn" service ( http://www.logmein.com/ ) because it's free and secure. There are extra features you can try that require a paid account, but the basic remote desktop service is really free. Once you get it set up, poke around in the options to learn how to a because it's free and secure. There are extra features you can try that require a paid account, but the basic remote desktop service is really free. Once you get it set up, poke around in the options to learn how to automatically blank the host screen (so nobody can watch your activity) and lock the host console when you disconnect.

     There's another very similar service, called "GotoMyPC" ( http://www.gotomypc.com/ ), but it costs US$20 per month to use. I was happily shelling out money each month for GotoMyPC, until I discovered LogMeIn!  Symantec's "pcAnywhere" product
( http://www.symantec.com/home_homeoffice/products/remote_pc_fax/pca115/index.html )
offers remote desktop access, but costs about US $200 -- ouch!  Or, if you have Windows XP Professional Edition, there's a feature called Remote Desktop which offers similar functionality. But the upgrade from XP Home to XP Pro costs about $100, so it may require some up-front investment, and I've heard that making it work can be a challenge even for experienced users.  Hope this helps some of you.

(3) Make Windows XP stop bugging me!

Question:  Every time I reboot my computer I get this annoying nag screen that says "Your computer might be at risk - Automatic Updates is turned off - Click this balloon to fix this problem."  I choose to manually look for Windows Updates and don't want Automatic Updates turned on.  Do you know of some way that I can deactivate this annoying Automatic Updates nag screen?

Answer:  In most cases this prompt is probably a good idea. Many users will no doubt benefit from being pushed and prodded into keeping their system up to date with all the latest patches and so forth.  For the rest of us it just bothersome.  The message you are getting is a result of the new security consciousness that is installed on your computer as a result of the all knowing, very concerned XP Service Pack 2.  And yes, it is rather irritating.  The good news is that this nag is easily turned off.  Just open Control Panel and then Security Center.  On the left side menu, click the "Change the way the security center alerts me" item.  Remove the check mark from Automatic Updates.



   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) ...
 

ANDROID

Android doesn't anger, nor does he engage in actual combat, rather he will merely point
out the logical inconsistencies of other Warriors.  Irony and sarcasm are completely lost
on Android, and being impossible to insult or injure in any way, he is invulnerable to
conventional attack.  If, for example, someone were to call him a pinhead, he would get
out a tape measure and after finding that his cranium falls within normal size specifications
Android would dismiss the comment as erroneous.  Android's circuits are not equipped to
process ambiguous or aesthetic input, consequently any extensive discussion involving
personal feelings, intuition, art and metaphorical allusions will quickly drive Android from
the field of battle.

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 30 new members who joined us during November 2005:

Lee Allard
Kirkwood, NY
Sharon Bair - SLP
DeForest, WI
Chris Callahan - Caregiver
Yukon, OK
Patricia Clark
Andalusia, AL
Verna Clark
Highlands Ranch, CO
Rob Craig
Sylvan Lake, AB, Canada
Aaron Durkin
West Valley City, UT
Joan Enns - SLP
San Jose, CA
Richard Essegian
Phoenix, AZ
Raj Gupta
Tamilnadu, India
Ashish Gupta - Caregiver
Tamilnadu, India
Dennis Holte
Boise, ID
Richard Janes
Columbia, KY
Clayton Jennings
Edwardsville, KS
Barbara Jennings - Caregiver
Santa Barbara, CA
Kay Jennings - Caregiver
Edwardsville, KS
Gary Jordan
Virginia Beach, VA
Patsy Lamberson
Greenville, MS
Shannon Leach - SLP
Fort Walton Beach, FL
Jose R. Martinez
Hialeah, FL
Martin Peddie
Newcastle under Lyme, Strat., UK
Eleison D. de S'o Christov'o - Caregiver
Humble, TX
Thomas Siddons
Chicago, IL
Sherry Smith - Caregiver
Oklahoma City, OK
Mike Stoltz
Little Rock, AR
Bill Strickland
Westville, OK
Melissa Vitale - SLP
Louisville, KY
Frank White
Glen Rose, TX
Jack Wicklund
Brainerd, MN
Timothy Wolfe - Larynx Cancer Patient
Pahrump, NV



 
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
      

  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.



  © 2005 WebWhispers
Reprinting/Copying Instructions
can be found on our
WotW/Journal Page.