|Name Of Column||Author||Title||Article Type|
|Musings From The President||Murray Allan||Bylaws Balloting||News & Events|
|Musings From The President||Murray Allan||My First IAL Meeting||News & Events|
|VoicePoints||Dr. Jeff Searl||Articicial Larynx Devices||Education-Med|
|News, Views, & Plain Talk||Pat Sanders||IAL-VI-SLP-ES-AL-TEP||News & Events|
|Living the Lary Lifestyle||Joan G. Burnside||Chapter Four||Education-Med|
|News You Can Use||Scott Bachman||Babysitting Tips||Education|
|Between Friencs||Donna McGary||Just Another Victim||Experiences|
|Bits, Buts, & Bytes||Dutch||Computer Tips||Experiences|
|New Members||Listing||Welcome||News & Events|
Murray's Mumbles ... Musings from the President
(1) WebWhispers Bylaws Balloting Results:
I am pleased to announce that our new Bylaws were overwhelmingly approved by
our Voting Members in a ballot measure run during 25-30 May 2005.
Fifty-nine percent (59%) of our then 197 Voting Members cast their votes in the balloting. The final results were:
(Note: 5 invalid votes were cast; 4 votes cast by Non-Voting Members and 1 invalid vote cast due to the lack of a Name/Email address of voter. 21 Members submitted comments to the EC with their ballots)
Below are two representative samples taken from those who exercised their franchise and who emailed their comments to us:
*** " I have no suggestions or recommendations to make. My only comment is that Dutch Helms, for having established this site, deserves more recognition than he will probably ever receive. All of the members of the executive also deserve our most grateful thanks. All of the good this group is doing is evidenced by the number of new members coming in every month. The members who have prepared themselves to become Moderators along with our current Moderators are also to be thanked for their interest and concern. This organization has matured to the point where it will be functional for many, many years into the future. Thanks again. Everett C. "Sam" Beights. "
*** " This organization is the finest source of information, experience and especially support through a very sudden, eye-opening experience that I have found available anywhere. All the questions asked are answered in a timely manner by people who have "been there, done that". As a 6.5 mo. laryngectomee who hadn't a clue, I am impressed with the outpouring of support and empathy expressed. You are doing a fine, needed job and I hope to be a part of the club for a long time. Larry A. Wilt "
(2)My First IAL Annual Meeting
It was way back in '98 when I joined the "hole in the neck" gang and I became involved in my Vancouver club and of course WebWhispers.
The local and WW support was excellent and I was soon to learn that laryngectomees had an international club to belong to if they so desired. In July 1999 I flew to Reno, Nevada and became an official delegate to the International Association of Laryngectomees' 48th Annual Meeting and 39th Voice Institute and the slogan was WINNERS ALL. The President, a fellow Canadian, was the late George Ackerman who was a great leader and a true gentleman and is fondly remembered by all that knew him.
I must say that I was overwhelmed by the number of Larys that were in attendance and as a first-timer I could hardly believe there were so many of us from all different parts of North America and the world.
WebWhispers had a great banquet with many attending although as it was not then an "official" IAL function it was not listed in the IAL program. We are now recognized and listed annually. It was there that I met and listened to Dutch Helms, WW founder and Webmaster, speak and make presentations after dinner. Little did Dutch (or I) know that he was to be honored with the first Casey-Cooper Laryngectomee of the Year Award in 2001 at Myrtle Beach, SC and that I would be presenting it to him as President of WebWhispers.
While going to breakfast one morning in Reno, I came upon a wonderful lady that I and many others will never forget, yes, it was the "great guru of laryngectomees", Pat Sanders, who is extremely active in WW (currently Vice President - Web Information) as well as many other research and information gathering duties in aid of laryngectomees. Pat was the second honoree and recipient of the prestigious Casey-Cooper Laryngectomee of the Year Award in 2002 in my home town, Vancouver, and it was my great pleasure to present it to her.
Another lady that I remember well is speech language pathologist, Dr. Carla Gress. I awoke one morning to find I couldn't voice with my TEP. A quick visit to Carla and she had me babbling away in no time. Dr. Gress has recently been named Director of the IAL Voice Institute and we are honored to have her join us as she is a very kind, caring and knowledgeable professional person.
I also met the incomparable Paul Galioni, debonair in cowboy hat and boots. Paul is often a contributor to WW of memorable and detailed academic submissions.
Speaking of the IAL, the Annual Meeting will be held in Boston from September 1 - 3 with the Voice Institute starting August 30. Naturally, we will be having our WW banquet on Friday, the second of September. If you haven't reserved your seat yet you may do so now on the WW site. See you in Boston!
Take care and stay well.
? 2005 Dr. Jeff Searl ]
coordinated by Dr. Jeff Searl, Associate Professor ( firstname.lastname@example.org )
Hearing and Speech Department, The University of Kansas Medical Center
MS3039, 3901 Rainbow Blvd., Kansas City, KS 66160
My first introduction to an artificial larynx was in 1962 as a graduate
student in Speech Pathology. At the completion of a (one-and-only) two hour
lecture about laryngectomy surgery and esophageal speech the instructor held up
a beige, battery-operated device called a Western Electric #5C Artificial
Larynx. He indicated that it had been introduced in 1959 and quickly said, ?As a
last resort, those who are too lazy to learn esophageal speech can talk with one
of these squawk boxes.? He pressed and released the ?on? button twice to
demonstrate the ?unacceptable? mechanical sound of the instrument. Later, I
understood he was reflecting the sign of the times when influential leaders from
the lay laryngectomee group and from the professional community comprised of
laryngologists and speech pathologists discouraged use of an artificial larynx
and strongly encouraged use of esophageal speech.
It was one year later, while working at Mayo Clinic, that I met a laryngectomized male from Argentina. He was speaking with a Western Electric # 2A pneumatic-type artificial larynx that had been available in our country since the 1920?s, almost 30 years prior to the introduction of the #5C ?electronic? neck-type artificial larynx. Despite its availability, I had never been exposed to the pneumatic-type of device either in my graduate training or in my work with laryngectomees at Mayo Clinic! Again, I think it was the sign of the times and an error in the judgment of many well-meaning individuals. Perhaps there is a lesson to be learned now as we think of alaryngeal speech options.
When using the Western Electric #2A pneumatic-type device this gentleman?s voice sounded almost like a laryngeal voice and seemed quite acceptable to those with whom he interacted. He reported ?no difficulties? with communicating his business dealings throughout South and Central America. Truly, it was hard to believe that his voice sounded so natural. However, I could not ignore the fact that the placement of the instrument?s stoma cup required access to his uncovered stoma and proved distracting. Also, if use of this instrument was to be manipulated with only one hand it required precise placement of the stoma cup and the tubing that ran from it to the metal vibrator encasement and, then, into his mouth. To me it seemed awkward to manage and I wondered how difficult it was to articulate with a tube inside the mouth. I had some of the same concerns when later that year, I learned about the Cooper-Rand mouth-type electronic artificial larynx that required insertion of a tube from the tone generator into the mouth. Dr. Cooper, an otolaryngologist, and several electronic engineers from the Rand Development Corporation, filed the patent for it in 1959. I have since learned that some people are very adept at speaking intelligibly while using an intra-oral mouth tube and that such an instrument is frequently the first type to be introduced to the newly laryngectomized individual.
For several years these three artificial larynx devices (Western Electric pneumatic-type # 2, Western Electric # 5C electronic neck-type and Cooper-Rand electronic mouth-type) were the only ones available. They were not often seen or heard. Their use was discouraged by prominent esophageal speakers and speech pathologists who considered them a ?crutch? and a deterrent to learning and using esophageal speech. Those who used them were either ?closet? speakers or rebels who dared to sound different. During those times, 1940?s 1960?s, there was no acceptable role for use of artificial larynx devices.
Gradually, attitudes changed and a variety of manufacturers developed and introduced new speech aids into the market place. Some speech devices went by the wayside but, generally speaking, most instruments have been accepted well enough to make it profitable for a few dealers to stock, advertise, sell and repair them. Currently there are 15 artificial larynx devices available for purchase in the United States. That this many are advertised says a lot about their general acceptance and current use in the lives of laryngectomees throughout our country.
When we consider the role of artificial larynx devices during the laryngectomees? activities of daily living it is important to consider who uses them and under what circumstances. When I surveyed laryngectomees attending either state laryngectomee meetings in California, Florida, Minnesota, Texas or International Association of Laryngectomee Annual Meetings in 1997 or 1998, the respondents were asked to indicate their ?primary mode? of communication and their ?back-up? mode of communication. In CA, TEP (tracheoesophageal puncture speech) was used more frequently as a primary method of alaryngeal speech communication, followed by AL (artificial larynx speech) and, then, ES (esophageal speech). However, in three other states (FL, MN, TX), artificial larynx speech was used more frequently. In FL and TX use of artificial larynx speech was followed by TEP speech and, then, esophageal speech; in MN the use of artificial larynx speech was followed by ES and, then, TEP. Data from the IAL Annual Meetings in Toronto and Indianapolis showed that a significantly higher number of participating laryngectomees used TEP followed by AL and, then, ES. So it appears that during 1997 and 1998 there was a geographic difference among most frequently used methods of alaryngeal speech. In CA more laryngectomees used TEP speech whereas in the other three states surveyed, more laryngectomees used AL speech for their primary method of communication. Also of interest is that a significantly higher number of participating laryngectomees attending the IAL Meetings in 1997 and 1998 used TEP speech followed by AL and, then, ES. No doubt such information influences topics and treatment sessions designed to appeal to the majority of attendees. Also, data for many research investigations concerning laryngectomees are often obtained from participants at IAL Annual Meetings. It is likely that findings could be skewed because of the greater number of TEP speakers in attendance. Such data could very well influence our thoughts about the numbers of TEP speakers.
When this data is combined with that from two other studies (Hillman, 1998; Gelman,1995) we can extrapolate and determine that of the total 392 laryngectomees surveyed between 1993 and 1998, approximately 44% used AL speech; 22% used ES and 20% used TEP speech as their ?primary? method of communication. Also, it is interesting to note that for a ?back-up? mode of alaryngeal communication, approximately 40% of TEP and 40% of esophageal speakers use an artificial larynx, whereas about 10% of TEP and 10% of AL speakers use esophageal speech. It is obvious that a great number of laryngectomees are using AL speech as either a primary or back-up means of communication.
Elsewhere in this WEBWHISPERS site is a page titled Hints About Talking Again By Using An Electrolarynx. Included on that page is a list compiled by Tom Beneventine from a questionnaire study he conducted at a 1996 IAL Annual Meeting. The question he posed to TEP and ES speakers was: In what situations do you feel a TEP or ES speaker can use an electrolarynx as a back-up or spare, or in other situations where an alternative method is needed or desired? The responses Tom received provide us with additional insight about the role of artificial larynx devices. He collected a total of fifty-four reasons that were given by TEP or ES speakers for using an artificial larynx as a ?back-up? or spare. The list makes interesting reading but there is no need to repeat all 54 items here. The ten most frequently occurring reasons were: (1) when fatigued, (2) moist situations, (3) extreme amount of secretions, (4) congestion/mucous in the puncture, (5) noisy places, (6) leaking prosthesis, (7) stoma infection, (8) illness, (9) hampered speech due to medical problems and (10) speech not understandable. Reasons such as these help explain why laryngectomees have come to rely on artificial larynx devices and accept their use. Recently, a friend described them as the tried and true!
There are other or related reasons why laryngectomees choose to use artificial larynx devices. Some utilize them as a primary method of communication because an intra-oral type was introduced immediately after surgery and it fulfilled an immediate need to communicate that was not possible with the other two methods of alaryngeal speech. Later, in their speech rehabilitation process they might have chosen a different type of artificial larynx but, to them, there seemed no reason to change to either of the other two alternative methods of speech. They like to use an artificial larynx so why change horses in the middle of the stream? It was relatively easy to learn to speak with such a device and family members as well as hospital personnel could readily understand their speech. Many, self-employed or not, found it rewarding because they were able to return to work and other social/economic activities without complications or long-term commitments for therapy with speech pathologists.
For some laryngectomized there is no choice. Esophageal or TEP speech therapy is limited or not available. New Voice Clubs and other support groups are non-existent in many geographical areas. The Internet is a wonderful source for those with a computer but all are not interested in or able to have such a tool. Finances are also a factor. The initial cost of an artificial larynx and batteries seems quite reasonable when compared to expenses incurred from TEP surgery and on-going maintenance or expense of typical esophageal speech training. Most AL devices are viewed as low-maintenance because of their extended warranties and minimal repair needs.
The aging process also influences whether one might choose to use artificial larynx speech either selectively or primarily. Decreasing muscle tone for those of us over 60 may have an adverse impact on the muscles associated with production of both TEP and esophageal speech. Both quality of voice and loudness of voice might be affected. Hearing loss of the TEP or ES speaker, and/or the listener, may cause the speaker to expend more effort to produce loud speech and become more easily fatigued. Under such circumstances the fact that the artificial larynx is considered better than the other two methods for use in a noisy environment can be most appealing. There is another aspect related to age that is not often discussed but one I have witnessed in my practice as a speech-language pathologist. When laryngectomized individuals experience recurrence and are in the advanced stages of cancer, speaking often becomes difficult. Yet it is a time when individuals need to communicate and appreciate the opportunities to do so. Family members, friends, hospital or hospice staff, religious representatives, etc. appreciate hearing about the patient?s needs and thoughts either bedside or over the telephone. At such times the use of an artificial larynx may be easier and less fatiguing than use of the other two types of alaryngeal speech.
Lastly, it seems appropriate to suggest that all laryngectomees have a speech aid and know how to use it. There are times when either esophageal speech or TEP speech may be useless or inadequate. Some of these times may be unpredictable and under emergency conditions. The name itself, speech aid, implies that it is to be used when needed and ?horror? stories from laryngectomees across the country should alert us to the fact that a back-up method of oral communication is a great idea. An artificial larynx or speech aid might be viewed as something like an insurance policy. Generally, it is considered wise to have one; you never know when you might need it!
What is the current role for use of artificial larynx devices? It is obviously an important role that seems to be expanding with use of the AL, either as a primary or back-up method of alaryngeal speech. They can be used immediately following laryngectomy surgery; when the speaker prefers to use AL speech; when training for use of the other methods is not available; when the golden years are not so shiny and when one decides that, in case of emergency, they would rather be safe than sorry.
Views, & Plain Talk
by Pat Wertz Sanders, WebWhispers VP - Web Information
With Murray and Shirley both writing about 1999 and prior years, this is a good time to run my 1999 report when I attended the Voice Institute as a Laryngectomee Trainee. This was my first IAL and I have not missed one since.
Just arrived home from the 1999 IAL Convention/Voice Institute held in
Reno. I attended the VI from 8AM to approximately 6PM every day and my head
was, and still is, ringing with voices, voice choices, voice problems and
voice solutions. I will share what I remember and can dig up from their
literature and my notes as we go along. I saw some interesting voice equipment
that I had never seen before. There is a keyboard that speaks the word as you
finish typing and hit space or you can set it to wait and speak the entire
sentence or it will do both. It has a human voice. For someone, who can't
learn to speak because of severe surgery, this is a wonderful device.
Then I saw a pneumatic speaking device and the man who was using it had a superb voice. It must take a lot of time to learn to use one, but if you are living in a place without electricity, the 'no battery' feature would be the way to go. It has a cup that goes over the stoma and a tube that goes into the mouth. Very simple ($112). There is another that uses a reed ($69). I tried the pneumatic one and was barely able to get out a recognizable "Hello" because I couldn't get my timing right and kept doing everything backwards. From watching the expert, I would say it has to be played with practiced timing at the stoma cup, but it would be fun to have one to play with!
I have known very few esophageal speakers (ES) since our thrust here in Birmingham is using the tracheoesophageal puncture (TEP) and the artificial larynx (AL), but I ran into a lot of ES folks at this convention. Dr. Ed Stone, who is one of the best and most entertaining lecturers you could find anywhere, headed the VI Institute and faculty. The other members of the faculty were excellent lecturers but most were heavily slanted toward ES. This was rather exciting in one way because I would get to learn something new, but, as I listened, I began to realize how many of them put forth the impression that if you didn't do it the ES way, you were copping out. One speaker mentioned TEP as a way of speaking that left you 'one handed'. Another ended her lecture with the comment that you might even decide to reverse your TEP. I found this same attitude among some of the ES laryngectomees.
One man, using an AL, who was there to learn ES told me, "I don't want one of them IMPLANTS!" Did anyone ever explain the puncture to him? I doubt it. A lady ES said she thought either method was fine but it was all about choice and she was bothered that we are not being offered a choice here where I live. True, but I wonder if the TEP was thoroughly explained to her and if she had any more of an 'educated' choice that I did. Our choice of a doctor will indicate which speech-language pathologist (SLP) we use and most SLPs will recommend the brand of AL, or type of speech and prosthesis that they like. Bias will show. A shrug of the shoulder, a facial expression or a tone of voice indicates that something s/he is saying is not worth talking about. This is not necessarily bad, because the SLP that is working with you would do you a disservice if the recommendation were for a method of speech in which s/he is not proficient, unless there were other coaches available.
As I listened and watched at the convention, I heard marvelous speakers but I also heard people who could be barely understood. No matter what method of speech, it seems those who articulated well were the easiest to understand. Timing, phrasing, and enunciation are the keys to any one of these methods.
TIP # 31: GET A PRESCRIPTION TOOTHPASTE:
Radiation may wreak havoc on your teeth, causing general weakness, calcification, cracking, breaking and caries. Reflux from tube feeding can bathe the teeth in sugary liquid and acid, causing further damage. A prescription flouride toothpaste and flouride carriers every night can save your remaining teeth. So ask your dentist.
JB's note: Having to go for months with many missing teeth was one of the worst after effects of cancer. It will probably be a couple of years before I have to contemplate major dental work again, but until then I'm using my Water-Pik, my electric toothbrush, my $10 toothpaste, flouride trays and lots of water all day long.
TIP # 32: DON'T CENTER YOUR BASEPLATE
Instead of centering the baseplate over your stoma, position the center bottom point of the rim even with the center bottom point of your stoma. When you cough up mucus, the rim will help guide it all the way out into your tissue. Otherwise the mucus will pool on the skin below your stoma, degrade the adhesive that holds your baseplate on, and (oh, no!) blow your seal, so you can't talk.
JB's note: This felt so counter-intuitive that one of my SLP's had to tell me about it on two separate occasions before I took it to heart.
TIP # 33: GET YOUR TASTE BACK
Use two to four times the normal amount of spices and herbs in freshly cooked foods to retrain your taste buds. Be cautious with chili powders, alcohol and chocolate, however, using less of these, if any, in your cooking. You'll find that cooking from scratch with fresh ingredients will help you taste again.
JB's note: When I started eating again, the flavor disappeared after a couple of seconds in my mouth, and I felt as if I were chewing wood. Gradually, the flavor sensations have come back for many foods, and every restaurant meal is an adventure. Wine is still impossible. This is tough on a California girl.
TIP # 34: JUST SAY NO TO YEAST DRUGS
Larys often comment on how long they can go before their yeast problems clog their prostheses and a change is required. Others point out that prostheses can be changed on a weekly, biweekly or even monthly schedule and there will never be a yeast problem. The "used" prosthesis is soaked for ten minutes in hydrogen peroxide, washed with soap and water, allowed to dry and then stored until it's time to swap it out again. This approach is favored by those who don't want to take medication and those who don't want to pay for the medication. Nystatin alone can cost $70 per month.
JB's note: Now that I can change my own prosthesis, I am taking this approach with the exception of putting a tiny amount of Nystatin on my prosthesis brush. Nystatin is very sugary and bad for radiation damaged teeth.
TIP # 35: FIND YOUR SWEET SPOT
The "sweet spot" on your neck is key to mastery of the electrolarynx, but you may not have one and must use a straw-like device inside your mouth, instead. Larys and their speech-language pathologists (SLPs) urge you to keep on experimenting. Your radiation affected and swollen neck will change over time, and you may be able to use the EL better eventually. Even TEP users will want to find that sweet spot so they can have a backup speaking mode.
JB's note: Most of the time my EL sits on a window sill, plugged into the recharger, but once a month or so, I try for a sweet spot. I'd love to have the speaking option.
TIP # 36: CONVERT YOUR WORLD TO E-MAIL
It's often inconvenient or impossible to talk on the phone for the first few months. It simplifies things if you use e-mail whenever possible. If you're having someone else make your phone calls, anyway, ask them to call for just the e-mail address and carry on from there. You could also record your e-mail address on your phone message machine and request that the caller e-mail instead.
JB's note: My city has a great website with a built-in e-mail system. I have used it to report the presence of horses in a neighbor's yard and a broken wheel on my trash can. The municipal court does not use e-mail, so I sent snail mail explaining why I shouldn't have gotten a ticket and why I couldn't appear. They gave me probation, so at least I don't have a record. There is power in the written word!
TIP # 37: FLY THROUGH AIRPORT SECURITY
Identify your supplies by putting your orange emergency card on top of the supplies in your carryon bag. One Lary says he attaches his Neckbreather lapel pin to the bag's exterior, and that's why he has no problem.
JB's note: I've never had a problem with my carry-on bag, but I did have a problem bending over to tie my shoes after having to take them off. Now I wear slip-ons.
TIP # 38: "READ MY LIPS"
Visual cues can improve your listener's understanding, so make sure the light falls on your face and keep eye contact. Some sounds can be a little more exaggerated visually: put your tongue between your teeth when starting a word with th, or place your two front teeth on top of your lower lip when starting a word with f or v. Facial expressions and gestures help a lot. And when you have a serious objective in mind, have a visual aid handy, just like the President.
JB's note: The other day on C-Span I heard an admiral say that he couldn't talk without his computer and Powerpoint.
TIP # 39: USE A SUPERBALL
If your "hands free" voice is breathy or whispery, push in on the area above your stoma to see if you can find a "sweet spot" that gives you more voicing. If you find one, wear an elastic band around your neck and over that spot. If the pressure band is only a little help, try inserting half a superball (you'll have to cut it), round side in, on the sweet spot. If it works, you can cut the finger off a garden glove, insert the ball and then sew it to the elastic.
JB's note: This tip came via an SLP from a Lary. She also showed me a similar device made with half a wooden ball.
TIP # 40, LUBRICATE WITH CARE
If your Lary tube, or Barton-Mayo button, or catheter requires lubrication for insertion, be sure to use only the lubricant designated by your doctor, such as Surgilube or KY Jelly. Protect your stoma and lungs: do not ever use a petroleum based product such as Vaseline in, on, or around your stoma and airway.
If you're eating, how is your taste coming along? Have you had a yeast problem? If so, what do you think about swapping out your prosthesis more often vs. using a drug? Do you already have a good sweet spot for your electrolarynx? Have you been using e-mail more and are you saving it for reference? What about airport security? Are you working on giving your listener more visual cues? Have you asked a question on WebWhispers yet? Write, draw, paste or staple anything for your book and keep it.
REPORTS FROM ROBOCOP?S REPOSITORY
News You Can Use ... by Officer Scott Bachman
To pass on to your children,
grandchildren or other teenagers who may be involved in a babysitting capacity.
Before you take on a
babysitting job let one of your parents speak with a parent of the children you
will be babysitting so they can get to know them and ask questions that may be
Always provide your parents with the name, address and phone number of the family you will be sitting for.
When you arrive make sure you speak with the parent (s) and ask any questions before they leave. Make sure you understand their directions. Don't be afraid to ask again if something is not clear.
Get a telephone number and location where the parent (s) will be. Also get an expected time of return. Write this information down.
It is a good idea to have one of your parents call you at the location just to ensure everything is okay. Think of this as a way to find out if the phone is working properly.
Try to learn the phone number and address of the location you are at. This can be very valuable if there is an emergency. Keep the following numbers nearby.
WE ARE AT T/P# ____________________________________________
Learn the full
names of the children and their descriptions, such as:
AGE_________ HEIGHT_______ WEIGHT______
If the children are allowed to go outside to play make sure you know where they are and when they will return.
** If the family has a swimming pool never leave the children unattended. NOT EVEN FOR A SHORT PERIOD OF TIME! **
It is not a
good idea to have friends visit you or have long phone conversations while you
are babysitting. Think about it. Your attention is not directed towards the
children while this takes place.
If the parent(s) you are sitting for arrive home and have been drinking, politely refuse a ride home. It is a good idea to pre-arrange transportation anytime you baby-sit in the event of a change in plans. Staying the night may also be an alternative if you are comfortable with that and have your parent?s approval.
Know the layout of the home you are in. Plan in advance an escape route for a fire or if an intruder enters.
Keep all doors and windows locked and turn on outside lighting front and back.
Close curtains and shades at dark to keep others from knowing you are there alone.
NEVER LET A STRANGER IN! Don't be embarrassed to insist on proper identification from anyone. If he/she can't produce it don't let him/her in. Call 911 and let a police officer check them out. All police officers and utility employees carry photo identification.
If there is a peephole on the door use it. Then you can see who you are dealing with.
Make sure the children understand they are not to open the door for any reason.
If someone comes to the door and asks to use the phone for an emergency offer to call 911 for them. DO NOT LET THEM IN!
Do not provide any information over the phone to someone you do not know. Tell the caller that the residents are busy and you will take a message or ask them to call back. Do not tell them you are by yourself or when the residents will return home.
If you become frightened or suspicious by noises or subjects in the area CALL 911.
If you should call 911 be prepared to answer the following questions:
- YOUR NAME
- THE ADDRESS WHERE YOU ARE
- WHAT NUMBER YOU ARE CALLING FROM
- WHAT HAS HAPPENED
WAS ANYONE HURT
Once police have arrived there may be more questions.
When you call 911 DO NOT HANG UP UNTIL YOU ARE TOLD TO DO SO!
Just Another Victim
October 2001 My Journal
The world needs another "How I Survived Cancer" book like it needs another Country and Western song about D-I-V-O-R-C-E. My mother, bless her well-meaning heart, thinks I am an undiscovered genius and wants me to chronicle this journey. Unfortunately, there isn't that much new to tell. Cancer is a messy, unpredictable, and painful disease that all the love in the world can't halt or change. There is also a singularity to all the books, tapes, support groups, and cancer related paraphernalia--- you are not alone or, perversely, you are not unique. The hardest thing for me to realize--- for all of us to realize, is that our lives are really not our own anymore.
Try as hard as I might, I can't speak and, indeed, may never speak again (normally)?it's a horrible feeling. No more horrible than losing a breast or a testicle or a lung or a piece of one's gut--- we could all write a book about the ravages and victories of cancer. I don't want to. In the first place, it's not the cancer that is the enemy; it?s the ammunition against the cancer that has brought me low. And I love my doctors, they are caring and competent and still they do not know why I keep getting worse when I am doing everything right. I am being positive; I eat my beta-carotene vegetables; I drink 2 liters of water; I get plenty of rest; I do everything, everything, everything. It is not enough. My doctors are clearly concerned and caring. Everyone seems to take a special interest in me; we joke that I can't seem to break up with them.
I resent the implication in a lot of the literature that we, the victims, can control the outcome by our behaviors, such as prayer, or meditation, or exercise, or herbal concoctions. I am especially troubled by the assertion that prayer can heal. Whose prayer and to whose god? Time and time again profoundly devout family and friends lose loved ones to some terrible accident or illness. If prayer works, why weren't their prayers answered? Who are you, who recovered, to say that prayer works?
I have no doubt that prayer comforts and strengthens and that may in turn contribute to the healing process, but the power of prayer alone does not heal. Jim Morrison was right, "You cannot petition the Lord with prayer." At least, I hope he was right, because I am deeply disturbed by the idea of a god who, even given that a deity by its very nature is mysterious and unknowable, would promote the idea that prayer could sway outcomes and then not honor those who practice it. I am more comfortable with a universe where both prayer and god are constructs of man (pretty good ones, actually) that serve as security blankets in a confusing and random existence that is, nevertheless, an awesome, passionate and infinitely sweet treasure. Take it from someone who knows?ask not for whom the bell tolls?
I must admit some trepidation in making that particular journal entry public. I want to say right now that I mean no disrespect to anyone. Perhaps I should also say, right off the bat, that I thought my Nana, a profoundly devout woman for all of her 102 years, was right when she told me she never prayed for the Lord to change her lot in life, which included lingering illness & debilitation of her husband and ultimately herself, as well as her parents, whom she had cared for in her own home until their deaths. Rather, she prayed for strength and faith. I have no doubt that her faith was a source of infinite comfort and encouragement throughout her long and oftentimes difficult life.
That said, I still do not believe that prayer changes outcomes, only attitudes and responses to outcomes.
Perhaps, we need to examine what we mean by prayer. Years ago, I believed that our very lives should be a continual prayer, and in many ways I lived that way throughout my twenties. I stopped praying altogether when I learned that my spiritual leader was false and his teachings suspect. Needless to say, it was a rude awakening and I struggled to adapt to a world where you could not ask the Lord what to wear or where to work and expect a reliable answer. So it is understandable if you think my aversion to prayer is reactionary. Believe me, I have given this a great deal of thought over the last 23 years.
Prayer works, just not like that. Jim Morrison is still right-- you can not petition the Lord with prayer-- but you CAN petition yourself. If God is within us all, and I can believe something like that, then the power of prayer, the power to marshal all the ?strength and faith? my Nana talked about, is also within us all.
Prayer can also work in other, less miraculous but no less inspiring or effective, ways. I think of my friend Irving. He is an elderly gentlemen who until recently lived at the retirement community where I work. Irving was a bit of local color, shall we say. He never married, had no family to speak of and, although very intelligent, seemed perennially childlike. I can not imagine how he made it through WWII in the Army, but he did. He could be very trying. However, when I was so sick I could not talk or get out of bed, he would send me the most eloquently written get well cards you can imagine, neatly typed on formal stationary. I saved them all and they still make me laugh out loud at their dignified sentimentality. They were Irving?s prayer for me to get well and they worked. I always felt much better after reading them. I had hundreds of other cards and gifts, and while they were not all quite that unique, they all carried with them that power of prayer which is love and compassion for our fellow man.
I guess that would be my religion these days.
Bits, Buts, & Bytes
(1) Google Suggest
Finding stuff in a search engine is sometimes quite difficult. Choose the wrong search terms and you end up with either a squillion hits or none. What we need is a way to see how many hits our search terms are going to generate BEFORE we do our searches. That way we can refine our search terms as we type them.
Enter Google Suggest. Just point your web browser to
and start typing. Google Suggest provides you with search suggestions, in real time, as you type. Key in a few letters of a particular search term and Google Suggest displays a list of words it thinks match.
For example, if you search for "webwhispers," Google Suggest shows you keyword suggestions as you key in each letter in the name. It's kind of humorous because, as you type each letter in the name, Google's suggestions include Walmart, weather, WebMD, webwatchers, webwhacker, webwhirler, and then finally little old us (1,180 references found).
Google Suggest works in Internet Explorer 6.0 (or newer), Netscape 7.1 (or newer), Mozilla 1.4 (or newer), Firefox 0.8 (or newer), Opera 7.54 (or newer), or Safari 1.2.2 (or newer). But there are two catches:
2. You can only get to Google Suggest by going to: http://www.google.com/webhp?complete=1. You can't get to Google Suggest directly from Google's homepage.
For more information about Google Suggest, check out the free FAQ page at:
Is Google Suggest a replacement for the regular, plain old Google searches we know and love? Nah. But if you aren't quite sure what you're looking for, or if you want to see how many hits a particular search term or phrase might generate, Google Suggest might be for you.
(2) Membership Lists
In our continuing effort to make sure our Membership Lists are current and correct, 59 additional listed laryngectomee/caregiver members were removed from our roles during April and May, due to invalid Email addresses - thus finishing our review of these categories. We have now begun an Email address review of our medical and vendor members. With luck, our Membership Lists will be as current as possible by mid-June.
ListServ "Flame Warriors"
Pithy Phrase is a walking
compendium of famous quotations and wise adages.
Above courtesy of Mike Reed
See more of his work at: http://redwing.hutman.net/%7Emreed/
Welcome To Our New Members:
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
We welcome the 42 new members who joined us during May 2005:
Evie Adams - Communicative Medical
West Haven, CT
Crown Point, IN
Debbie R. Coleman
Jacqueline Elaban - Caregiver
Kenneth M. Fitzgerald
N. Potomac, MD
Pompano Beach, FL
L. Dean Lincoln
Rose Moran - Caregiver
County Galway, Ireland
Jozsef & Deborah Perger
Fort Pierce, FL
Nicole Raco - SLP
East Haven, CT
Pedro Santos da Cunha,
Glen Gardner, NJ
Gail Temple - Caregiver
Neptune City, NJ
"Jack" F. Thompson
St. Petersberg Beach, FL
Jeanne Turner - Caregiver
Shari Williams - Caregiver
Eden Prairie, MN
Sutton Hill, Shropshire, UK
WebWhispers is an Internet-based laryngectomee support group.
It is a member of the International Association of Laryngectomees.
The current officers are:
Pat Sanders............V.P.-Web Information
Terry Duga.........V.P.-Finance and Admin.
Libby Fitzgerald.....V.P.-Member 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: email@example.com
? 2005 WebWhispers