January 2006


 

 

Name Of Column Author Title Article Type
Musings From The President Murray Allan Nominations Casey-Cooper News & Events
VoicePoints Dr. Jeff Searl Pre Operative Counseling Education-Med
Living the Lary Lifestyle          Joan G. Burnside, M.A. The Easy Button Education-Med
Between Friends       Donna McGary Sub-Cultural Diversity Experiences
WebWhispers Columnist Sharell Babin Letter To Our Readers Experiences
911 Tips Dutch Your "911" Needs Education
News You Can Use Scott Bachman House Fires and You Experiences
Bits, Buts, & Bytes Dutch Computer Tips Experiences
New Members Listing Welcome News & Events

 


            Murray's Mumbles ... Musings from the President
 
Nominations Needed
2006 Casey-Cooper
"Laryngectomee of the Year"

Through the generosity of our late member, Charles Lamar, of Tuscaloosa, AL, this program was initiated in 2001.  It was initially and subsequently funded by Charles with sufficient funds to carry us through the first years of our 'Laryngectomy of the Year' award.  We have had a few other donations dedicated to the Casey-Cooper Fund, since we lost Charles, and it would be greatly appreciated if some of our members would like to make a small donation yearly to honor our first two WW Presidents and the hard working winners of the award named for them. 

In setting up this award, WebWhispers was to form a committee each year, appointed by the President, to receive nominations from our members for the person they thought most deserving according to the criteria set in our rules.  The nomination should outline the good work done by an individual to aid rehabilitation of fellow laryngectomees and a suitable award in the form of an engraved pewter bowl would be presented to the winner.  Last year the WW President appointed a committee consisting of the first four winners, with the longest term winner serving as chair.  Each year the chair drops off of the committee and the new winner is added.  Thus, our first winner, Dutch Helms (2001), who served as chair last year, retires and Len Librizzi joins the committee.  The current WW President is an ex-officio committee member, cannot vote except in a tie, and will be responsible for appointing a new committee member in the event someone is not able to serve.

The criteria for nominating a member is to be explained by the current committee chair via email in our WebWhispers list, prior to January 15th when nominations will open.  The Awards Committee shall have the total responsibility for, and complete independence in, selecting the annual recipient of the Casey-Cooper award. The committee for 2006 consists of the following members and previous winners:

Chair - Pat Wertz Sanders (2002) - pat@choralmusic.com
Mary Jane Renner (2003) - mjrhns@aol.com
Herb Simon (2004) - H457@aol.com
Len Librizzi (2005) - LLibrizz@optonline.net

This is your opportunity to voice your opinion as to who you consider to be the best 'Laryngectomee of the Year' for 2006.  The winner will be announced at the WebWhispers Banquet in Chicago at the IAL convention in July.

Take care and stay well.

Murray Allan, argus@shaw.ca


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

PRE-OPERATIVE COUNSELING IN LESS THAN IDEAL SITUATIONS

Jeff Searl, Ph.D., CCC-SLP
University of Kansas Medical Center
and
Emily M. Scott, M.A., CCC-SLP
Private Practice, Tiffany, OH

You would be hard pressed to find a speech-language pathologist (SLP) or an ENT surgeon who would argue against the need for pre-operative counseling of patients who are scheduled to undergo total laryngectomy. Discussions with SLP colleagues in various parts of the country suggest that in some locales nearly all of the patients scheduled for laryngectomy are seen for pre-operative counseling while in other locations, such appointments occur infrequently.

Reasons for not completing pre-operative counseling are varied: lack of value placed on such counseling by a particular SLP or surgeon, refusal by the patient, and logistical difficulties such as SLP schedule constraints, among others. Some of the reasons for failure to complete the counseling may be addressed in a positive manner that encourages completing a higher percentage of these sessions with patients and their families. For example, some ENT surgeons may simply overlook the potential value of having the patient meet with an SLP before surgery. In such cases, the SLP should attempt to point out to the ENT the benefits of such counseling and education. On the other hand, SLPs might have to be made aware of this need if their professional training neglected this point. This might occur at the urging of an ENT, contacts from local Nu-Voice clubs,  SLPs working in the city or region, or continuing education events in which an SLP participates.                                                                               

Sometimes the practical problems are more challenging to work around. As a group, SLPs are generally good-hearted people who want to help people through difficult times (total laryngectomy certainly qualifies as such and more for many people!) and while we have known SLPs who bent over backwards to make pre-operative counseling sessions happen in a timely fashion, a face-to-face meeting of SLP and patient sometimes just is not possible. Many times, patients live several hours away from the medical center making it difficult to schedule a return visit if scheduling did not permit the SLP to meet with them on the day of the ENT visit. Usually the problem is the short time frame between the ENT telling the patient that surgery is needed and the actual surgery, often as short as a few days. Even when schedules are tight, it might be possible to, at least, have the SLP meet with the patient and family for introductions, to give some very basic information regarding the surgery and its effects on speech, and to tell them when they will be seeing the SLP post-operatively and still in the hospital.  We recognize that such a brief encounter is not the ideal. A number of folks have written fairly detailed descriptions of the purposes, structure, content, and overall approach to pre-operative counseling regarding laryngectomy. A brief visit is not enough to cover it all, particularly if the patient and family have many questions or have significant need for emotional support.

In instances where our usual 30-45 minute (or more, if necessary) face-to-face session cannot take place, we suggest some procedures that allow some of the information to be conveyed to the patient and family with an opportunity to answer questions as needed. Many SLPs have had to make other types of accommodations and we've borrowed some of what we do from our colleagues who find themselves in similar circumstances. Again, whenever possible we opt for the in-person meeting because it is, in our opinion, the best avenue for achieving all the goals of a pre-operative counseling session. The two broad goals we keep in mind are:

1) educate the patient and family regarding the surgery, its effects on voice and swallowing, post-surgery voice options, and sequence of events to come regarding surgery and rehabilitation, and
2) provide emotional support for the patient and family.

BRIEF IN-PERSON MEETING

If we only have time to introduce ourselves to a patient and their family we take a three step approach:

1) introduce ourselves and educate briefly,
2) give them materials to take with them, and
3) follow-up with a phone call to answer questions and add information.

Introduction and Brief Education Portion

We never just introduce ourselves. We steal as many minutes as we can to at least assure them that we will be working with them to get them communicating after the surgery. In the few minutes we have, we describe that their voice will be gone after surgery, but quickly assure them that we will work on re-establishing speech with a high rate of success to be expected. We sometimes have time to describe the surgery a bit (maybe with a picture to help) and mention the three main voice options (artificial larynx, esophageal speech, tracheo-esophageal speech). We most definitely tell them when they should expect to see us next post-operatively and what we will start to work on.

We know we run a few different risks in this type of brief encounter. We may heighten the patient's anxiety (or the family member's) if we are not careful, perhaps even if we are. The encounter needs to be positive, but still with a realistic presentation of what is to happen (i.e., loss of the voice, need for rehabilitation to restore voice). We acknowledge to the patient that we are only giving them some of the basic information right now because of the time constraint. And that we have some information for them to read over when they get home that can help them understand. In the next breath, we tell them that we want to call them after they've had a chance to look at the information so that we can answer questions.

Take-Home Information

We have simplified anatomical drawings that are labeled, showing the pre-operative and the post-operative situation (larynx removed, trachea turned to the neck, pharynx separated now from the airway). There are drawings available from a variety of textbooks or from companies that sell laryngectomy supplies (ATOS and INHEALTH both have good drawings); we sometimes use our own similar drawings. I can't think of a time that we would actually let the patient walk out the door from this encounter without at least orienting them to these pictures so that they can start to digest the information once they are reading on their own. We also include a sheet that briefly describes the three main voice options after laryngectomy: electrolarynx, esophageal speech, and tracheo-esophageal speech. If we know that they are to have a tracheo-esophageal puncture done at the time of the laryngectomy surgery, we still give them information about all three options. These are not detailed descriptions of any of the options, but rather an introduction to the possibilities and assurance that we will work with them to identify the best method for them.

In the literature, it has been commonly reported that patients and family want written materials educating them about the surgery, voice loss and rehabilitation. Often they might have had a hard time processing some of what was said to them because of the emotional-psychological stress of the situation.

Finally, we give them our card with contact information. We pick a day and time that is good for us to call the patient and we write this on the back of the card. We take the responsibility to make the phone call to the patient at whatever number they give us.

We have gone further than that with what we give them to take home, in some cases. We have filmed an SLP explaining the anatomical changes. The point that the voice will be gone after removing the larynx is made on several occasions and the reasons for this are given. The three alaryngeal speech options are also briefly described by the SLP with short audio and video clips demonstrating how the voice sounds for each option. The SLP in the video also describes the rehabilitation sequence that will follow the laryngectomy surgery starting with the first visit by the SLP while the patient is still in the hospital. Of course, these descriptions are fairly generic in nature and the typical sequence and outcomes are described. We certainly recognize that the follow-up post surgery might vary to some extent (as might the voice rehabilitation outcomes) depending on the particular patient's situation. On the video, the SLP frequently reminds the patient and any family members viewing the video to write down any questions that they want to ask the SLP in the follow-up phone call that will happen in the near future. We have the video available in several formats: VHS tape, on a CD that can be played in most home computers, or as a DVD that can be played on most DVD players.

We continue to have ideas about how to modify what we give them. For example, it may be helpful to actually give them a sheet of paper specifically laid out for them to record their questions that they want to cover with the SLP. Some of the descriptions that are given in the video need further editing or re-recording to clarify content. Overall, however, the verbal feedback from the patients and families about the usefulness of the information in this format has been positive. At some point, the whole package might be worthy of distribution and sharing with other colleagues who engage in laryngectomy rehabilitation although it feels fairly raw at this point with more refinement needed.

Follow-up Phone Call

As indicated above, during our initial encounter when introductions are made, we also set up a time for a follow-up phone call. Making this phone appointment within 1-2 days of the introductory meeting makes most sense to us. First, it is possible that there are only a few days until the surgery itself and we want to encourage the patient to review the home materials beforehand so that they have some idea of what is to come and have the opportunity to have questions answered. Second, we want to try to get the patient dealing with the information rather than only dealing with uncertainties and doubts that might spring from not understanding what is about to happen.

In the follow-up phone call we ask for the patient (rather than the spouse or other family members), we re-introduce ourselves and give them an opening to ask questions. Many do have specific questions which we try to answer. If they don't have questions, or don't have many, we probe them just a little bit with our own questions, such as: Do you understand how you'll be breathing after the surgery? Can you explain it to me? Do you know that your voice will be gone? Can you explain that to me? Do you understand a little bit about how you can get a voice back after surgery? And, so on. We encourage them to have the written materials in front of them as we might refer them to a specific item during the phone conversation. If they have the video, we might have them play or replay a certain part while we are on the phone and then see if they have any questions. It can be cumbersome, but usually it elicits concerns or questions that hadn't been raised previously by the patient.

We also ask to talk with the patient's spouse (or other family members). We want to answer their questions as well. In our experience, these are the folks who often have more concerns or questions — at least they seem more likely to share those with the SLP. Again, we might review some of the written material or the video with the spouse as we have them on the phone.

While this process has worked well for the handful of patients with whom it has been tried, there certainly are some problems. We still prefer face to face when we can do it because we get a chance to pick up on so much more. In the scenario described above, it is sometimes not always clear how much the patient has absorbed. We miss out on body language and facial expressions that could convey confusion about content. We certainly miss out on some non-verbal signs regarding anxiety and concerns that I think we are more sensitive to when the patient is sitting across from us. In general, the primary drawback is on the emotional support/counseling side of things. Besides not picking up on some of these concerns over the phone or during the brief introductory meeting, the SLP sometimes may not be able to convey as much support in the form of a comforting look or a light hand on the fore-arm when talking about difficult concerns. The procedure is better set-up for doing pre-operative education as opposed to counseling although we try to do both 

No Time for Pre-operative Meeting

There might be some debate about what to do with pre-operative counseling when it is not possible to meet face-to-face with the SLP. One option is to simply not have any information conveyed from the SLP, relying instead on the information provided by their ENT surgeon with the SLP coming into the picture only after the surgery while the patient is still in the hospital. An alternative is to provide some information to the patient and at least some idea of the SLP role in the voice rehabilitation process. The ENT can refer the patient to the SLP. The ENT (or more likely the nurse working with the ENT) can be trained to give the patient the packet of written material and the video described above before they leave the office. The SLP initiates phone contact and proceeds with our introduction and some reference to the materials that were given to them by the ENT. We ask if they've looked at this information yet. If not, we encourage them to do so. Based on our feel of the conversation, we might ask them to go over the material and set up a second phone appointment wherein we can answer questions. At other times, we might start reviewing the material with them over the phone.

Discussions and Conclusions

We've had one enterprising patient who has asked to do a video-phone conference using his home computer. At the time we did not have a set-up to do a video conference from our side of it. However, that might be a very useful tool. Telemedicine types of approaches might work but it would be dependent on the availability of the right technical set-up for both the patient and the SLP. As such technologies become commonplace, we could see this as a real possibility in the not so distant future. Telemedicine approaches have been described in other areas of clinical practice within the field of speech-language pathology and the American Speech, Language, Hearing Association has put forth papers describing the role that telemedicine might have.

The type of encounter that is limited strictly to non-face-to-face contact is the least attractive option. We like to begin establishing some trust and connection with the patient and family prior to the surgery. The phone or video hook-ups are less conducive to this than sitting next to the patient. There are however, some benefits to the approaches described above. First of all, some information gets conveyed to the patient rather than none. Patients and families have expressed that these contacts have been helpful. From the SLP side, we can vouch for the fact that it makes the first post-operative visit more productive. The patients and family have some knowledge base to work from and everyone knows each other to some extent. An additional advantage to this approach is that patients may have more time to review information and clarify their questions and concerns. Many times in a hospital/clinic setting, the pre-operative counseling might happen immediately after the ENT has just confirmed for the patient that they need a total laryngectomy. This may not be an ideal time for the patient or family to process additional information that the SLP will provide in a pre-operative meeting. A quick introduction with some information provided may provide a point of contact for the patient. Then they can review the materials given to them at home where they might be more comfortable and have more time. Of course they might also get themselves worked up or perhaps confused, so we have to be careful to set them up, so that doesn't happen, by letting them know we will follow-up by phone to clarify information for them.

We are continuing to think about what we are doing with pre-operative counseling because we see it as important. We write clinical notes for any pre-operative contacts that we have with patients whether they are brief in-person visits or phone calls. At the moment we do not bill for the time we spend in these endeavors. If the telemedicine component becomes more of a reality in the future, we could envision this type of pre-operative counseling being taken to a different level. However, we do not envision, nor would we advocate, any such remote contacts replacing the face-to-face pre-operative session.

Available materials continue to require refinement, both the written and the video, but those also could serve a valuable role for clinicians once they are further developed.



 
 Living the Lary Lifestyle          Joan G. Burnside, M.A.
  Copyright 2006

 


The Easy Button

Are you like the elf carving a digital camera out of wood, doing everything the old way and hoping you'll get something newer and better?  While the commercial features an earnest young man convincing the boss to use the "easy button", why would we want one?

Because after cancer and treatment, and since we have aged a few years in the process, we think we're supposed to feel tired and take longer to do our chores.  There's no time for pure enjoyment, even if we can remember what it feels like.  Or there may be something in the background of each person that could keep them from using the easy button.

You may have been raised by Luddites or by people who venerate doing it the "right" way, meaning the hard way.  You may even think you're getting a little exercise.  Or perhaps you have one of those dismissive personalities: "Aah, it's not worth it to try something new."  It could just be inertia, but you are going to need the easy button now more than ever because of cancer fatigue and side effects that can recur now and far into the future, intermittently or constantly.  These very real problems will steal your time and energy from any enjoyable ideas you may want to pursue.  But it's never too late to use the easy button.  If you start now to make your life easier, you may be able to regain or maintain your activity level, or perhaps even improve it.  Grandma Moses started painting at eighty-five!

Where do you find those easy buttons?  Start by noticing what you do now, and figure out how to make it easier.  No sooner will you make one improvement than you will think of another that improves on it.  For example: you use a terry robe to get dry.  How about hanging that robe on an over-the-door hook, closer to the shower?  Great, but to get the robe off the hook requires a stretch and stand on your tip toes--so how about using a holiday wreath hanger instead?  Going from there, I use wreath hangers for holding my dog leashes and coats on the inside of the front closet door.  That led to placing a bench by the front door so I could sit down to leash them and get my mud shoes on.  Those saved minutes turn into hours and the hours into energy filled days I can use for fun.

You'll also find a lot of easy buttons on those home improvement TV shows.  The reorganization shows give you techniques for parting with things, setting areas aside for specific functions and separating "stuff" into containers.  My containers are all clear plastic providing a little extra visual aid when I'm searching.  But my favorite idea comes from Rachael Ray and her thirty-minute-meals show.  She puts a big mixing bowl on the kitchen counter and dumps her vegetable peels, empty cartons, egg shells, etc. into the bowl.  I used the idea to put a wastebasket on the bathroom counter.  No more used baseplates, filters, or adhesive removers floating to the floor, requiring me to pick them up.  No more residues on the counter, either.  And, for example, when I forget if I have put my skin barrier on, I can just glance in the basket for the evidence.

What have you just stopped doing altogether?  I was taking showers, even though I preferred the tub, because getting out the tub was difficult.  I had been thinking about getting grab bars, but hesitated because of recent installation trauma with a satellite TV dish installer.  By happy chance,  I was passing by a medical supply store, went in, and the clerk showed me a device that fits over the side of the tub.  I could put it on all by myself, quite easily!  I also wasn't doing much vacuuming.  Because my right arm is impaired from a neck dissection, I had to use two hands to push the vacuum and even then could do only one room at a time.  I don't know why it didn't occur to me to buy a self-propelled vacuum.

One of my most helpful energy savers has been my personal amplifier.  Before I got it, I was thinking only in terms of being heard by my hard of hearing mother when I visited daily.  But now, I realize how much effort and strain it saved both me and the listeners.  The good effect was multiplied because my baseplate seal lasts longer now with less air pressure being exerted upon it.  So that means I don't have to go through the whole routine of putting on a new baseplate if I go out in the evening.

But the biggest and best easy button was moving to a new retirement community.  My living space has decreased but my new home is better designed and much easier to live in.  I had already pared down many possessions in an earlier move but now I do not have the responsibility of watering the lawn or lugging the garbage can out to the curb.  Also, because of the convenient location, I am saving even more minutes and energy every day.  The move was exhausting and time consuming, but I'm over it now and it was worth it.  The dogs are getting walked a lot more as I live practically across the street from Central Park (Not NY!), and being out in nature is good for the soul.

When you visit, you'll be dazzled by my beaded, fringed lampshades and the giant fabric-art wall-hanging in my bedroom.  Some of my work is too hard to explain and probably even harder to understand, but definitely enjoyable to do.  As an amateur, I am dusting off skills I haven't used in over 30 years and it is hard work at times.  I've got to find some new easy buttons!



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


Sub-Cultural Diversity


Culture

My old college sociology textbook defines culture as "the totality of learned, socially transmitted behavior.  It includes the ideas, values and customs [of] groups of people".  It also identifies a number of "cultural universals, aspects of shared, learned behavior developed by societies to meet basic human needs".

Language is one of these cultural universals, as are games, gestures, food habits and taboos, courtship, bodily adornments and myths, among others.  I imagine every budding sociologist has had the same assignment I was given - to identify a sub-culture in our society and do an ethnography.  It is actually a fun and revealing project in which you attempt to identify how that particular sub-culture manifests each of the cultural universals.  I was working at a newspaper at the time and so I did my paper on that.  Certainly, some of the universals were a bit of a stretch (to put it mildly!), but I found many of the unique aspects of my particular sub-culture fascinating to look at from that perspective.

Sub-Culture of the Deaf

What got me thinking about all this was a recent program on PBS called The Sound and the Fury (check your local station for airings- it is moving, troubling and powerful and, obviously, thought-provoking).  It is a documentary about the controversy within the Deaf Community over cochlear implants. As I am sure most of you know, cochlear implants are the latest technological/surgical procedure to allow severely hearing-impaired and deaf persons to hear.  It has had some remarkable successes, but it does not work for everyone.  At this time, it appears that for children who are born deaf, the sooner the procedure is done, the more complete the success.  We are talking about babies- less than a year old; the reason being that so much language development occurs in the very early years.

It is that word language that is the bugaboo here.  Back to my old textbook: "Language is the foundation of every culture, though particular languages differ in striking ways. [It] is an abstract system of word meanings and symbols for all aspects and culture. Language includes speech, written characters, numerals, symbols, and gestures of non-verbal communication." 

The Deaf Community argues, rather persuasively, that they have their own language- ASL [American Sign Language], which is a unique part of their deaf culture, does not require invasive procedures on infants to have a high rate of success, and fosters acceptance and support for deaf children and their families.  They do not consider deafness a disability, but rather a distinction.  They do not want deaf culture eradicated.  And any hearing person who has ever watched someone signing ASL, whether in the classroom, the Theater for the Deaf or the grocery store, can not help but be impressed by its eloquence and dignity.

Sub-Culture of the Mute

But I am not deaf, I am mute.  I rely on a technological device and its attendant batteries, re-chargers, special seals and screens to talk aloud.  I am not a candidate for the latest surgical/technological procedure.  I speak the language of my society but in a way that some find difficult to understand.  I sympathize with the WW member who recently wrote of a couple of people who hung up on her because they couldn't understand her (although I am appalled and angered by their rudeness).  Nevertheless, I understand.  I was so surprised when I joked with the Cable TV lady on the phone the other day and she laughed.  My jokes are NOT that bad - it's just really hard to get the right inflection with a Servox, especially over the telephone.

So, my point is- we are a culture.  We have our own language.  Actually, it is not a unique language, just a unique way of expressing it.  Not unlike the Deaf Community- we have our own jargon and tools of communication within the larger mainstream- we have our own support groups and education. We "socialize our young"- the "newbies".   We have our own myths, bodily adornments, heroes, food habits, folklore, gestures and jokes.

Not a day goes by that I do not long for my "old voice".  My hearing is acute.  What still makes me sad is that even though I can hear every nuance of your speech and I can record it perfectly in my mind, I cannot reproduce those nuances in my own speech.  The voice I hear in my mind and the voice you hear in your ear are very different.   If you and I talk face to face, I can convey some of the subtlety and emotion that is characteristic of human speech with facial expressions, hand gestures and body language.  In that way my "speech" is similar to ASL- it is both visual and visceral; indeed it is sensual, in a way that normal vocalization need not be, in order to be effective.

Diversity

What is remarkable is that ASL reproduces those subtleties and nuances so elegantly and effectively that even the hearing community can learn to appreciate the language.  I do not see that happening for us, nor do I wish it.  But I wonder about the power of the human experience that Beethoven could write some of the most extraordinarily moving music of all time when he was so profoundly deaf he couldn't hear it performed. 

Writing students are often encouraged to read their work aloud- even to themselves, as a way of hearing the cadence of their words and to test whether the writing flows and makes sense to the reader/listener.  Accomplished writers give public readings of their work, sometimes yielding whole new subtleties and understandings to the audience which is usually already familiar with their work.  This business of hearing and speaking our language is intimately linked to our humanity.  The adaptations we devise to compensate for our unique needs and challenges range from elegant to clumsy yet we somehow muddle through.  Whether through music or the written word, through hand and body language to technological advances, from painting and the arts to the volumes conveyed in a smile and a touch, we manage to communicate.  How marvelous!


   WebWhispers Columnist
                                                                                  
Contribution from a Member
 

Recently we received a letter that made us sit up and take notice.  It is not a new subject to many of you - similar stories appear from time to time on our list.  However we felt that this woman's brave and unflinching account of what she and her husband endured at the hands of dangerously misinformed (albeit well meaning) medical personnel warranted your attention.  Please read it - for your own sake as well as that of your loved ones.  Then, if you have not done so already, make sure that emergency response personnel in your area are aware of your unique situation.  At the end of her letter is one example of how this might be done.  If you make only one New Year's resolution this year, make it this one - to educate the emergency response teams in your area to the special concerns of "neck-breathers".   Sharell's letter is not an easy read, but it is an important one and one we thank her for taking the time to send it to us in her time of grief.   (Donna McGary, copy editor)

AN OPEN LETTER TO OUR READERS
from Sharell Babin
Maplewood, Minnesota


To my WebWhispers friends,

I was very surprised at many things that happened (in the medical community) after my husband's last surgery on October 24. He had been told he had cancer on the back of his tongue. The actual surgery showed it was also on each carotid artery as well as the esophagus.

He had a lymph node removed from his right side; therefore, no further blood draws or blood pressure readings should have been taken from his right arm. I knew that. HOWEVER, the people who were taking care of him in ICU took blood and did blood pressure readings from his right arm and he ended up with Lymphedema. Nothing was being done to reverse the situation until I finally connected with "someone who cared" enough to do their job. It took 5 days to regain the feeling in his hand so he could hold his Servox and once again be able to speak. This never should have happened. I never left the hospital after my husband left ICU and was in a room of his own.

Even after regaining the use of his arm, people would appear at different times and try to take blood pressure readings or blood draws from his right arm. I immediately stopped that from happening. And there was a red notification at the head of his bed that stated no draws from his right arm. These nursing assistants never bothered to look up to read the signs. I told them they would have to take the blood pressure reading from the calf of his leg (he had a PICC line in his other arm). Some of these nursing assistants had no idea how to do that. I have never had any medical training. I just learned these things from observing the RNs who knew what to do and, thankfully, how to do their jobs.

The surgeon was unable to get the cancer and after the surgery did inform us that my husband was terminal. However, I do not feel that should have lessened his "quality of care" in the hospital.

My husband was put on morphine, which, of course, made the colon not do what it should do, and therefore made the bowel system shut down. He gained 39 pounds while lying in bed with no food.

My husband had a feeding tube. When first giving him food through the tube, it backed up through his stoma. So another tube had to be inserted inside the original tube and sent to his lower bowel system. So the feedings were stopped for about three days. During that time he was still receiving moisture so he wouldn't dehydrate, but that backed up and gave him what was called ileus. Again, it took connecting with the right doctors (who cared enough to provide healing orders) to get the right prescriptions to make the colon and bowel system work properly again and get rid of the ileus. The general practitioner overseeing my husband, was going to have him sent by stretcher to a nursing home where he could be "kept comfortable through drugs" until his passing.

I protested, and finally my husband was able to get on his feet and walk again and build up enough strength to come home to live out the time he had left. Yes, he walked from the entrance of the hospital to our waiting car on his own. That was a glorious moment. He did have eleven days at home to enjoy himself feeding the birds and squirrels, watching the deer (a joy for him) and driving the car right up to the very last day.

On his final evening my husband's carotid artery ruptured (it had a cancerous tumor wrapped around it) and he died as a result of that.  It actually burst and my husband bled to death, but I probably shouldn't be that graphic in an article. I did that thing that most spouses would do. I called the doctor's office first, then called 911. The doctor's office called back while I was waiting for 911 to arrive. The doctor told me to put my finger in my husband's stoma and press firmly on the artery where the blood was coming from. I'm assuming the doctor just wanted to keep me busy??? Since I later learned there is nothing that can save a life once a carotid artery bursts - not even if you're in a hospital when it happens.

Anyway - 911 did arrive and they took over. The doctor was on a speaker phone in case they had any questions for him. The emergency people placed my husband in a "carrying chair" and took him outside to a stretcher and then placed him in the ambulance. All of this, I felt, was as it should be. They let me ride along in the front seat. HOWEVER, within a block of our home, three deer crossed the road and the ambulance driver had to hit the brake to avoid the deer. In my mind I knew my husband had passed away and this was a sign his soul had gone on to heaven. He loved watching the deer in our neighborhood and they were there "one more time" for him. 

After the deer crossed the road I turned around to see what was going on with my husband. I was shocked to see him laying there with a mask over his mouth and a bag in the hands of one of the crew pressing (squeezing - whatever they do with the bag to create oxygen being passed into a person) to get oxygen into my husband's system. I calmly told them that he only received air through his stoma, that oxygen to the mouth is useless. They then informed me they had placed a plug in his stoma and therefore were giving him oxygen by mouth. If he weren't already dead, they would have killed him by doing this.

I am writing to you in the hope that somehow this can be turned into an article for the newsletter. I don't want to scare anyone, but I do want laryngectomees and their significant others to know how important it is to have an advocate, both in the hospital and in life in general, to speak up for them when they cannot do so themselves.

AND my cause now in life is to see how many 911 groups I can meet with to let them know that placing oxygen on a laryngectomee's mouth does absolutely no good and that plugging up a stoma would kill a laryngectomee who might otherwise survive some situations.

I now know there was nothing anyone could do to help my husband, but the treatment he received throughout the course of this last surgery and hospital stay, in addition to the plugging of his stoma, scares me. The lack of education by medical professionals in the care of a laryngectomee certainly exists and makes it essential to have an advocate while receiving medical procedures.

I was fortunate to have been married to my husband for 44 years, and was in no way ready for him to meet our Maker, but we have no choices in that matter. However, educating medical personnel is within our reach, if only I can figure out how to go about this in a positive way.

Please let me know if any of this can be used in a newsletter article to point out the need for someone to be with laryngectomees when they cannot speak for themselves.

Sincerely, Sharell Babin, Maplewood, Minnesota

***********

TAKE CARE OF YOUR "911" NEEDS
By Dutch Helms

     After reading several suggestions about contacting the local "911" dispatcher regarding my "condition" as a laryngectomee, I recently decided to do so.  I felt this especially important, given that I, like many laryngectomees, live alone, AND, it occurred to me that perhaps a situation could arise wherein I would need "911" assistance, but would be unable, for some reason, to actually SPEAK.

     First, since I was not really SURE where my local "911" dispatcher was, I called "911" to get the correct office address.  I then drove over and popped in for a visit.  They could not have been nicer!  I explained my "problem" (being a laryngectomee and a "neck-breather") and asked THEM what information THEY would like to have on hand should I ever call them and be unable to speak.  They happily provided me with a short list with which I returned home to complete.  The following day I returned to their office with the information which they promptly added to their computer system AND to a back-up Rolodex system.  They asked me to go back home, wait an hour or so, and then call them to "test" them ... so that I would know that the "system" was up and running as it should be.  I did this and, predictably, it worked just fine.

So, now, if I call "911" and am unable to speak, the dispatcher now has immediate access to the following information on me:

(1) Name, Address, Telephone Number, DOB, and that I live alone.
(2) That I am a laryngectomee (no vocal cords), speak via a voice prosthesis, am a total neck breather, have had a single coronary
      bypass operation, and have O Negative blood type.
(3) Name, Address, & Phone of two emergency contact persons. (An out-of-state primary family contact and one local good friend)
(4) Name, Address, & Phone of my Primary Physician & ENT.
(5) Listing of the medications that I take daily.
(6) Preferred local hospital for Emergency Care
(7) Name & Phone of my Medical Insurance Carrier
(8) My Medic-Alert ID Number they can use to contact Medic-Alert.  (I wear a Medic-Alert ID bracelet)

Needless to say, the experience was painless, short, and, I must admit, LONG OVERDUE.  I certainly feel a lot better now about calling "911" if necessary.  That I would recommend that ALL of us do this or something similar is a clear understatement.  While I am sure each "911" office may have its own unique preference for what information they would like to have, taking the time to provide it would seem well worth the effort and would be a significant contribution to your own "peace of mind."


 


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

                                          

House Fires and You

Most house fires occur between the hours of 11 PM and 6 AM

     Because the majority of house fires occur when most families are asleep and understandably unable to think or act clearly it is important to have a practiced escape plan that will quickly enable you to get out of the house and away from the fire.  Unless there is a continued risk for loss of human life do not reenter any burning structure.  Insurance will replace many things but it cannot replace you.  The following steps are guidelines.  Only you know what is best for your family.

  Call for a free home inspection from your local fire department to determine if there are any issues which need to be addressed.  Being preventative and proactive can be a good thing.

  Fire extinguishers may make a difference when a small fire is discovered.  However, remember that you are not a trained firefighter.  A small fire may turn into a much bigger fire despite the use of a fire extinguisher or the using the wrong type of fire extinguisher.  Every second counts towards getting out of the house safely.

  As a laryngectomee, consider how to effectively communicate an emergency of any type, not only to authorities but also to others in the house.  Know what telephone number to call, if other than 911, for fire, police or ambulance service.  If possible, use a speed dial button for those numbers.  Depending upon your preferred method of voicing, if you are alone make sure that you can communicate with an emergency operator or other emergency personnel.  If your electro-larynx is in another room it is the wrong time to try to remember where you left it.  If a TEP user, an electro-larynx should also be within reach if case your prosthesis is clogged.  Having an electronic whistle or sport/boating compressed air horn nearby is an excellent method to notify others in the house to an emergency.

  A flashlight at your bedside is also invaluable if smoke is heavy and power has been lost.  Your house may become more of a maze when filled with smoke and may create high anxiety on your part.

  Due to our physiology we are more susceptible to smoke inhalation.  Consider wrapping a bandana or small towel, wet if possible, around your neck to keep smoke from entering your stoma.  This should be an option especially if immediate evacuation of the house is not possible.  Remember to move lower to the floor to get under the smoke and check closed doors for extreme heat before opening them.

  Devise an escape route for everyone in the family. Install escape ladders in the upper floors of multi-level homes.  Give extra consideration for alternative plans regarding elderly or wheelchair bound relatives.

An escape ladder is easy to install and use.  Simply secure it to a window sill, release the ladder to the ground or lower porch/deck and climb down slowly to minimize the risk of injury from a fall.  This should be practiced as well.  If a fire were to occur that is not the time to identify a fear of heights or falling.

 Have an agreed upon meeting place where the entire family will meet after escaping the house: a neighbor's home or mailbox for example.

  Practice and time your escape. All family members should be able to escape in 2-1/2 minutes or less.

Strategically placed smoke detectors are a family's most effective line of defense against a fire.

Kitchen - Avoid placing the smoke detector too close to the oven or a ceiling fan where it can create false readings and set off the alarm.                                                                

Bedrooms - Inside the bedroom or centrally located in a hallway near several bedrooms is perhaps one of the most important placements. Remember, many fires occur while sleeping.                     

Garage - A smoke detector is ideal for the garage where paints, chemicals, gasoline and other combustibles are often stored. Garage smoke detectors should be placed above the door of the entrance to your home. A carbon monoxide detector should not be placed in the garage as motor vehicle fumes will constantly trigger the alarm.                                                               

Basement - A dual detector (smoke and carbon monoxide) is a good choice for the basement where water heaters and furnaces are often located. For increased safety, stored items should be kept away from the water heater, furnace and the detector.

Types of Detectors

  Direct Wire with Battery Back-up - hardwired directly into the electrical system of the home.  Includes a 9 volt battery to power the detector in times of electrical outage.
  Lithium Battery Powered - has 10 year long-life battery
  Detector with Safety Light - helps light the way to an escape route in case of an electrical failure
  Dual Detector - all-in-one smoke and carbon monoxide detection

Be sure to select the detector that includes features you desire and/or fits your family budget.  Test smoke detectors regularly and check batteries when clocks are adjusted semi-annually.  On a recent NBC Dateline program dramatic video was presented which showed children and some adults not waking up to the sounds of a smoke detector alarm.  It also demonstrated the seriousness of knowing how to get out of your house as soon as possible under adverse conditions.

RESOURCES:
The Home Depot Information/ www.homedepot.com
Stop Drop and Roll (A Book about Fire Safety)/ www.simonsays.com
Fire Prevention and Education Materials/ http://www.usfa.fema.gov/dhtml/public/fserd.cfm 
The Complete Guide to Personal and Home Safety: What You Need to Know/  www.fisherbooks.com

*Note:  There are times when I fail to remember I am a laryngectomee.  As the years go by many of us accept our physiology as "normal" and rightly so.  Having just enjoyed my 13th cancer free anniversary on 11/05 and over 10 years back to full duty I often do not look back.  When I initially wrote this article I was not considering larys as a group and the ramifications of our surgeries.  Pat Wertz Sanders brought me back to reality about who I was writing to and why.  I believe I got it right this time.  Let us not lose what we have won back. Be safe!

Officer Scott Bachman
 

"Storm Station" & "Sound Soother"

     I received two very handy "gadget" Christmas presents this year ... both of which I thought might be of value or interest to many of our members.
 
     The first is the Black & Decker SS925 Storm Station. This all-in-one Rechargeable Power Source/Radio/Light features a Detachable and Rechargeable Flashlight, an Integral Room Light illuminates immediate area (which is REALLY handy), a 25 Watt Power Source to operate low wattage devices, an AM/FM/TV Audio/Weather-Band Radio, and a Built in Locator Light that automatically turns on when the power goes out.  It weighs about 12 lbs. and requires 4 AA batteries (not included in box).  All of these features run off the Storm Station's integral 12V rechargeable battery, which fully recharges overnight so you are always at the ready.  The built in weather band radio tunes to AM/FM/TV1/TV2/Weather frequencies to keep you up to date on the latest civil and natural emergencies for the nation and in your local area. The 25 Watt inverter powers small appliances like your home's cordless phone.  The 12 volt recharging port charges cell phones.  To be prepared for a power outage, you should keep the Storm Station plugged into an electrical outlet to maintain 100 percent of its charge.  That way when the power goes out the Storm Station will have all of its battery power to help you during a power outage.  I gave it a test run and it works GREAT and looks to be very valuable in the event of power failure ... compact and all-in-one.  If interested, it is likely available at many retail outlets and at Amazon.com and other Internet outlets.
 
     The second is the "Sound Soother", available from SharperImage.com.  It works wonders in creating "white noise" that can help you relax and go to sleep more easily.  It features all-digital recordings of authentic natural environments, plus innovative soundscapes of "Wind Chimes," "Foghorns," "Roadside," and 17 others...projected with amazing fidelity through a high-quality omni-directional speaker.  Make your choice to mask out "total silence", traffic noises, barking dogs, a snoring partner, or a neighbor's stereo.  Memory retains your last-selected sound upon start-up.  The 60-minute sleep-timer, during the final five minutes of play, gently ramps down to total silence — avoiding any abrupt cessation that can disrupt sleep.  Features rotary volume-control and headphone jack.  Measures 4 1/2" high and 5 3/4" across.  Runs on 6 AA batteries (ordered separately), or plugs in using optional AC adapter (ordered separately).  The 20 soothing sounds are: 1. Brook, 2. City, 3. Aviary, 4. Rain, 5. Fireside, 6. North Woods, 7. Rainforest, 8. Summer Night, 9. Oceanside, 10. Steam Train, 11. Everglades, 12. Yosemite Falls, 13. Wind Chimes, 14. Thunderstorm, 15. Ebb Tide, 16. Heartbeat, 17. Foghorns, 18. Dockside, 19. White Noise, and 20. Surf's Up.  I can highly recommend the "Thunderstorm" - the recording sort of "rumbles" and "pitter-pats" you to sleep!  I love it!
 
Dutch


                          Dutch's Bits, Buts, & Bytes

(1) "I Can't Access Secure Web Sites"

Question:  I have Windows XP SP2, and within the past several weeks I have not been able to get into any secure (https) sites.  I can get to the web page, but when I enter my Userid and Password, it says "The page cannot be displayed" -- what's up?

Answer:  That is what some users discovered when they applied the XP/SP2 megafix ... some things no longer worked, such as access to secure websites. Unfortunately there are many potential causes and possible fixes for this "page cannot be displayed" problem.  But most of them are easy to try.  Run through these in the order listed below, and chances are good you'll be back in action soon.


(A)  When this type of thing happens "suddenly", you should always suspect the cause is a recent software installation or update.  Just in case that new software is something you DON'T want -- like a virus or spyware -- the first thing recommended is to run a good anti-virus and anti-spyware tool.  Make sure your system is "OK".

(B)  Next, make sure you're up to date with the Microsoft system patches. To get the latest fixes and configure your system for automatic updates, open Internet Explorer, click on Tools, then Windows Update.  Allow Windows to download and install any critical fixes that are identified.

(C)  Once your system is up to date and cleared of "bugs", test your browser's ability to make a secure connection using the VeriSign SSL test site: http://www.verisign.com/advisor/check.html.  It will tell you if your browser has the 128-bit security feature that is required to connect to most secure sites and will also recommend any browser updates, if needed.

(D)  Next, on your browser, click on Tools, Internet Options, then the Advanced tab.  Scroll to the bottom of list and make sure "Use SSL" and "Use TLS" options (all versions) are checked.  Then check the security settings in Internet Explorer.  Click on Tools, Internet Options, then the Security tab.  Select Internet, then click Custom Level.  Use the dropdown box to set custom settings to Medium or Low, then click OK.

(E)  If you can identify when the failure to connect to secure sites started happening, a system restore may help by rolling back any changes that have been made.  Click on Start, Help, then "Undo changes to your computer with System Restore".  A calendar will show the system restore points that are available.  Choose the one JUST BEFORE the problem began and do a restore.

(F)  Still having a problem connecting to secure sites?  Your network router or firewall software may be blocking access. To find out if your router is causing the problem, unplug the network cable that runs from your cable modem to the router, and plug it directly into the network (ethernet) jack on your computer -- temporarily cutting the router out of the loop.  If that solves the problem, check your router's manual to see if it can block or unblock certain ports.  It's unlikely, but it may be configured to block port 443, which is used to make secure connections.  If you run a software-based firewall such as the Windows XP firewall, ZoneAlarm, Black Ice, Norton Internet Security or similar, turn it off and see if that fixes the problem.  Software firewalls can also block certain ports, so poke around and see if you need to unblock port 443.
 Hope this helps!

(2) Save Some Printing Ink!

Question:  Occasionally I need to print out a Web page.  The problem is that many of them have colored backgrounds.  Is there a way to print just the text and the images without printing the background?  This would save me a lot of ink!

Answer:  The cost of printer ink IS pretty ridiculous, and one can appreciate wanting to save from buying more printer cartridge replacements.  Fortunately, most Web browsers allow you to print pages and ignore backgrounds.  To toggle this feature in Internet Explorer, click on Tools, Internet Options and then select the Advanced tab.  In the Printing section there is a check box next to "print background colors and images."  If you uncheck this, only the text and images you want to print will be printed.  To toggle this feature in Netscape, select Page Setup under the file menu, and you will see a check box for Print backgrounds.


(3) Don't Miss Half of the Updates!

If you use the Windows operating system, you likely know how to manually or automatically get and install your critical Windows updates.  If so, this is GOOD!  However, don't forget ... you may have OTHER software on your system that needs updating, too ... for example, your MS Office software (MS Word, Access, PowerPoint, Publisher, Outlook, Excel, etc.).  You can access these updates directly from the Windows Update screen ... just click on the Tab at the top of that page labeled "Office Family" and follow the instructions.  These Office updates are sometimes even MORE critical than the normal Windows updates.  Happy Updating!

 

   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) ...

GRUNTER

Grunter always responds to discussion forum messages with a single word or a
short phrase, and he NEVER edits quoted material.  Most other verbose Forum
Warriors find Grunter a particularly exasperating opponent because he will answer
their lengthy pontifications with a simple "Yeah!". "Get a life.", "Whatever", "I agree."
 "Wrong.", etc.  While Grunter is not a strong Warrior, he is very elusive and difficult
to engage in direct battle, and only by his extended silence is there any indication
that he has been vanquished.

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 21 new members who joined us during December 2005:

Pam Baker - Caregiver
Gadsden, AL
Lorene Bender
Amarillo, TX
Herb Boeke
Richmond, BC, Canada
Amanda Edmondson - SLP
Las Vegas, NV
Larry Evans
Aurora, CO
James Holloway
Chesterfield, VA
Harry and Gail (Cargiver) Jensby
Bradenton, FL
Tom Keeffe
Omaha, NE
DeeDee Lahey - Caregiver
Burney, CA
Dane Lieblong
Kaufman, TX
Joseph McCord
Eatonton, GA
James Mellors
Ripley, NY
Margaret (Honey) Moga
Terre Haute, IN
Karen Roise
Morristown, NJ
John Shepley
Lakewood, OH
Leah Shiver - Caregiver
Bristol, FL
Rocky Shiver
Bristol, FL
Virginia Stafford - Caregiver
Bonita Springs, FL
Karolyn Thompson - SLP
Chicago, IL
Nicole Winther - SLP
Southgate, KY
Bob Yeater
New Bremen, OH

 

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

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

 

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



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



  © 2006 WebWhispers
Reprinting/Copying Instructions
can be found on our
WotW/Journal Page.