|Name Of Column||Author||Title||Article Type|
|Musings From The President||Murray Allan||Len Librizzi-Casey Cooper||News & Events|
|WebWhispers Columnist||Terry Duga||IAL 2005 - Boston||News & Events|
|VoicePoints||Liz McGraw||Lary Experiences In Peru||Education-Med|
|Between Friends||Donna McGary||Life goes on||Experiences|
|Cruise Clues||Pat Sanders||NE/Canada Cruise||News & Events|
|Living The Lary Lifestyle||Joan G. Burnside||Chapter 8||Education-Med|
|News You Can Use||Scott Bachman||Emergency Kit||Education|
|Bits, Buts, & Bytes||Dutch||Computer Tips||Experiences|
|New Members||Listing||Welcome||News & Events|
Murray's Mumbles ... Musings from the President
Leonard (Len) Librizzi
It was a great pleasure to present Len Librizzi with this coveted and prestigious Award at the WebWhispers Annual Dinner held at the IAL convention in Boston on Friday, 2 September, 2005 attended by nearly 180 WW members and our honored guests.
Len became a laryngectomee in 1990 and decided he would accept this challenge with dignity. He became the President of the Anamilo Speech Club of Nassau County and has been editor of that club's newsletter since 1993. Len is a volunteer with The American Cancer Society (Eastern Division) as Cansurmount volunteer visitor, a Camp Adventure volunteer visitor and a Camp Adventure volunteer and for Relay for Life.
Len holds an undergraduate degree from City College in Electrical Engineering and Masters Degrees in both Computer Science And Management from Polytechnic Institute of New York.
It is certainly fortunate for both WebWhispers and the IAL that he has acquired all this knowledge as he has been instrumental in producing fantastic brochures for both organizations and of course he is currently both the IAL Treasurer and Editor of the IAL News.
Len has attended every IAL Annual Meeting since 1990 and during those years he has devoted his time to being Chair or member of practically every committee.
At the Boston WebWhispers Dinner, Pat Sanders, VP- WebWhispers Information said, "Len Librizzi has agreed to accept the position of Information Library Chair. His abilities to design, organize and place information in different formats is going to be a definite advantage for us in the library. Len did a great job on "Massaging and Stretching" in pdf format ( a booklet taken from HeadLines) that has become our leading download from the entire site. This is a great start for us on a new expansion for WebWhispers in the area of "education".
Len is a man of honesty, integrity and distinction and it is a extreme pleasure and honor to have him join this illustrious group of winners of the Casey-Cooper Laryngectomee of the Year Award for 2005. The first winner of this Award was our founder, Dutch Helms, followed by Pat Wertz Sanders, Mary Jane Renner, and Herb Simon. WINNERS ALL!
All the very best to you and yours.
Take care and stay well.
IAL 2005 -
Some Personal Observations
by Terry Duga
The Annual Meeting of the International Association of Laryngectomees opens. It is August 31, 2005.
The singing of the Star Spangled Banner is beautifully performed by a Sergeant in the Massachusetts State Police. He has a fabulous set of pipes that do honor to our national anthem.
Next comes the presentation of achievement awards to Dr. Mark Singer and Dr. Eric Blom. Drs. Singer and Blom revolutionized alternate speech methods for laryngectomees by inventing the TEP and duckbill prosthesis. The sad thing about this presentation is that it is perfunctory. Bob Mehrman, President of the IAL, barely describes their accomplishment and does not even ask them to come on stage to accept their awards. Rather they walk to the side of the rostrum and are handed their awards without being allowed to comment or acknowledge the award.
I, personally, feel that this is a slight of two men who allowed many laryngectomees to speak without the need of a machine or the hours of practice required to try to master some form of esophageal speech. While I am biased, having been a patient of Dr. Blom?s for over 12 years and thinking very highly of him, I think that my feelings hit home. Everyone with whom I discussed the presentation felt that the IAL missed the boat on this one.
The meeting gets back on track with the keynote speech by Dr. Daniel Deschler, of the Mass Eye and Ear Infirmary. He gives a wonderfully moving speech in praise of survivors and notes the laryngectomees and other cancer survivors in the audience are a great example. Dr. D?s address was a highlight of the morning, and rightfully so.
Later that day, Drs. Blom, Singer and Deschler joined Dr. Jan Lewin of MD Anderson in Houston, TX and Mark Finfrock, participating in a panel discussion regarding the TEP. As a TEP speaker, I found the session to be informative and interesting. As a patient of Dr. Blom, I enjoyed the easy repartee between him and Dr. Singer.
At sometime during the opening session, Pat Sanders offered my services to Carla Gress to take pictures for the Voice Institute to use in creating a brochure for the Voice Institute. This project made me attend more sessions than I probably would have otherwise and even to participate.
Besides taking pictures, I get to be an exhibit in a presentation by Tammy Wiggington. Tammy explains that the puffiness along my jaw is the result of the removal of lymph glands. I have always thought it was just extra fat finding a home. It has never been an issue, so I had never broached the subject with a doctor or therapist, but it is interesting to know that. And it is good to be reminded that after 10 years, I am still learning.
On Friday, I get to attend the clinic at Mass Eye and Ear Infirmary. The attendees get up early and take a bus to the hospital where everyone gathers in a training room on the 3rd floor. While the prospective patients/students wait their turn, they are introduced to various HME devices.
In the meantime, on the 11th floor, rooms are prepared. InHealth and Atos have set up tables filled with prostheses and other materials. VI attendees with problems are examined by the doctors and SLPs including Mark Singer, Jan Lewin, Tammy Wiggington, Lynn Acton and others. SLPs get to watch the various insertions of prostheses and examination of problems.
Michael Dreisbach proves to be more than a good sport when he allows Tammy to use him to demonstrate an insufflation test. I say that Mike is a good sport because he has no interest in TEP speech. He has had a puncture and did not care for it. He uses a Cooper-Rand as his primary AL and a True Tone as a back up. He likes the Cooper-Rand because he can hold the mouthpiece between his lips as he does his work with the Police in Raleigh, NC. Mike runs breathalyzer tests and does other processing, including fingerprinting. He testifies in court regarding the tests and he uses his excellent AL speech as a weapon in court, throwing the defense attorneys off their beat. As a lawyer, I appreciate his use of the AL. As a lary, I admire his self assurance.
He allows Tammy to run the insufflation test. This requires her to run a tube through his nose and down to allow him to inject air into his esophagus. Mike takes the discomfort of the tube down his nose like a trooper and exhibits excellent speech. I, for my part, get a good number of pictures of the procedure and take a couple of videos with sound of him speaking. The SLPs observing the test see a good example of a successful test.
Danny Lee also undergoes an insufflation test. He, also, braves the tube down his nose. Danny has had a jejunum reconstruction, so no one knows in advance if he will be a good candidate for a puncture and prosthesis. After a little work, and some discomfort, Danny is able to voice. The nice surprise is that his voice is not watery. It is soft, but clear. In many ways it reminds me of my early TEP speech, only a little stronger. The test shows that Danny could be a candidate for a puncture should he care to try that form of speech. The SLPs note that he has a stoma shaped to get and keep a seal.
On Saturday, the delegates gather and vote on changes to the IAL by-laws. They also hear reports from the various IAL officers and committee heads. A gentleman from Virginia, attending his first convention, points out that the board and the officers of the IAL need to provide better information to the member clubs. Herb Simon moves that the Board should report on committee meetings within 30 to 60 days of the meeting. I suggest that they can do this over the internet to save postage. The officers and executive director seem to balk at these suggestions. The executive director tries to reason that the Board, not the member clubs, should decide such a matter. The question is left unresolved. My thoughts are: if the Board does not decide to improve providing information to the member clubs, perhaps a recall would be in order. We shall see how this plays out in the future.
On Friday evening, the WebWhispers Nu Voice Club held its annual banquet. This year a record-breaking 175+ people attend. The hours of thought and effort provided by WebWhispers VP Libby Fitzgerald in successfully planning and executing this event are clearly evident and worthy of praise and recognition. The banquet is preceded with a reception hosted by Bruce Medical. Beer, wine, soft drinks and snacks are provided. People gather and chat in anticipation of the banquet. At the appointed time, the doors open and the diners enter the grand hall. Two buffet tables have been set up at either end of the room. The menu includes a really delicious choice of salads and vegetables, Beef Stroganoff, baked chicken breast with cream sauce, baked scrod with lemon butter sauce and a great assortment of desserts. Thanks to the generosity of InHealth and Bruce Medical, who underwrote half the cost of the banquet, the price has been kept to a reasonable amount per person.
Len Libizzi is presented with the Casey-Cooper ?Laryngectomee of the Year? award. He demonstrates surprise at the award and humility with his acceptance of it.
Other awards include a special award to Sabine Paul who is a non-laryngectomee originally hired to perform data entry for WebWhispers to allow us to have a directory of members and addresses. After the first month, Sabine has refused to accept payment for her work but has continued to provide an invaluable service to WW. I am thankfully allowed to present a posthumus award to Dr. Ronald Hamaker, a WW member who succumbed to colon cancer this year. Dr. Hamaker was a model of what a doctor and surgeon should be. Besides being a great surgeon, he was a complete healer who cared about his patients.
On Saturday is the Fun Show. The Fun Show is preceded by a magic act by Laurence Moss, a member of the host Boston Cured Cancer Club. The magic show is followed by the Fun Show. Once again, Ron Langseth has proven himself to be a proud successor to Jane Delveccio. In my opinion, he has improved on what Jane started. Ron has the laryngectomees speak their lines and, thereby, demonstrate various means of speech. They also show that we can do many things that people don't think we can do and he does this with humor and wit. I look forward to future shows.
Saturday ends with the IAL banquet. There is a cocktail hour before the meal. I am told by one attendee that my drinking is bad for me. I am shocked at the revelation, but continue to sip my cocktail. The room is divided into two areas of tables separated by a dance floor. This year, the IAL has wisely chosen to use a DJ for music rather than a live band. The DJ plays very nice, older music during the dinner. The volume of the music is low , which makes conversations by laryngectomees easy. The meal starts with a nice Caesar salad. Unfortunately, it goes drastically downhill from there. The entree is a form of Chicken Cordon Blue. The rather dry boneless, skinless breast is topped by equally dry and tasteless ham and some sort of cheese with what appear to be a few artichoke leaves for accent. The chicken is over bland white rice that is closer to minute rice than the real thing. The vegetables are pea pods and carrots. There is a vegetarian plate alternative.
Frankly, I am disappointed both in the meal chosen and the choice of the meal. By this I mean it seems that the cheapest alternative was selected without concern for whether or not a laryngectomee would have trouble eating the meal or whether it would offend certain cultures or religions. Note to the IAL. If the IAL really is an international organization, some concern should be given to diverse beliefs and tastes. Frankly, even if it isn't an International organization, similar care should be given. Certain religions forbid the consumption of pork, and I am not talking about minor religions. Offering a choice between a dish with pork or vegetarian is not acceptable. I suggest better care next year and in the future. The meal is ended by an adequate, though not outstanding, Boston Cream Pie.
The decision that we are all awaiting is where will next year's meeting be held. In light of Hurricane Katrina, Biloxi is out. It will be interesting to see what location is chosen.
As with everything else in
life, the IAL convention has it pluses and minuses. But it remains a good
learning and social time for those who attend.
? 2005 Dr. Jeff Searl ]
coordinated by Dr. Jeff Searl, Associate Professor ( email@example.com )
Hearing and Speech Department, The University of Kansas Medical Center
MS3039, 3901 Rainbow Blvd., Kansas City, KS 66160
Note from Jeff Searl (VoicePoints Coordinator):
I have not met Liz McGraw in person, but became aware of her work in South America by happenstance. The church group through which Liz has been doing her work was educating and raising funds at an event that I attended. I was struck by some of the bios of the individuals on the humanitarian and medical missions that were being described. The description of the young woman trained as a speech therapist, who now works with the poor and indigent in some of South America?s most southern countries, stood out in particular. After a brief email exchange, it was apparent that her experiences dealing with head and neck cancer (and laryngectomy in particular)placed her in a unique situation. It seemed to me that there was much to be learned and so I invited her to describe some of her work. You should know that she is not involved in her humanitarian work primarily as a speech pathologist. Rather, she happens to be a speech pathologist, with a very big heart, who is doing more general work to connect with and improve the lives of people.
Liz was trained in the United States, but has spent most of her time since then in other parts of the world, including Western Africa, Mexico, and now Peru and Chile. I enjoyed her recounting of experiences related to laryngectomy in Peru for a number of reasons. In part it served to highlight the magnitude of the issues that folks deal with in trying to train alaryngeal speech in other countries. Rarely do I think of the status of alaryngeal speech training in anything other than a modern, wealthy country with a definite Western-medicine focus. I also was struck by the fact that the pneumatic artificial larynx, perhaps the most often overlooked option in the United States and many other places, is arguably the most appropriate choice for the folks that Liz has come across.
Laryngectomy Experiences in Peru: KISS (or Keep It Simple Stupid)
By Liz McGraw
For the past four years, I have lived away from the United States in Mexico, Africa, and now Peru. Although trained as a speech-language pathologist, that is not my principle role with the group for whom I work. We are a small humanitarian organization with religious ties that organizes groups of individuals to assist indigenous people in learning how to farm more efficiently and promote their needs within their own governmental system. Most, like me, have been trained in a particular profession. Although I do not practice specifically as a speech pathologist in my role here, I certainly have been called upon to use my ?expertise? when the need arises, just as my colleagues with agricultural backgrounds take the lead in helping the farmers and the medical folks in the group assisting with healthcare needs. In my 8 months in Peru, I have now been called upon to see four individuals who have had a total laryngectomy. I am not necessarily an expert in the area, but there was, quite literally, no other person in the country, that I could track down, to help these men. With my limited training in alaryngeal speech from a few years back, and with intermittent access to the internet to hook-up with other professionals for guidance and information, I tried to offer these Peruvians what I could. This is the story that has come together over a 12-month time frame.
I met each of these gentlemen in a different part of the country. Peru is quite large and roughly divided between the ?highlands? (the Andes Mountains) and the low lying ?coastal region? with the population divided between these two. About half of the country?s population are Indian, one third are Mestizo (a person of mixed Spanish and Amerindian blood), maybe a tenth are of European decent and the remaining are a combination of African and Asian. The men that I saw came from indigenous groups of Indians living a fair distance from the major cities in Peru. The larger cities in Peru are Lima (population of about 6.5 million), Trujillo (population of about 600 thousand), and Chiclayo (population of nearly 300 thousand). In these larger cities, Lima in particular, there are medical services available, although the indigenous folks do not routinely use these services for a variety of reasons related to their culture, socio-economic status, distance away from the population centers and the inability to travel. I am not tied in closely to the local medical folks as that is not our primary mission, so there may be others (ENTs, speech therapists) right in Peru whom I could have tapped for services, but I am not aware of who is there.
To be honest, I cannot relay much to you about where these Peruvians had their surgeries done or other medical history. Part of my ?lack of knowledge? stems from language barriers. There are a large number of languages spoken here, even though Spanish is the official language. While we have good interpreters, the process of communication is often difficult, particularly for more technical topics for which the local language might not have all the relevant vocabulary for describing their medical conditions/history. This language barrier proved somewhat frustrating in working on alaryngeal speech options, but quite frankly, I have grown accustomed to communicating with folks with whom I do not share a common language. In general it did not get in the way. We laughed through our gesturing and mimicry as we tried to figure out what each was trying to say.
I was shocked that these four gentlemen had a laryngectomy in the first place. While there is Western medicine in Lima and the other larger population centers, even the indigenous folks who live within 50 or 100 miles of the centers tend not to access the healthcare system. Most groups have there own approaches and beliefs about health and disease (and how to treat it) that are rooted in the history of their culture. From what I could gather, however, there must have been some medical missionary work passing through some portions of Peru about 5-10 years ago. Each of these four had had their surgeries done roughly within this time frame and it sounded as if they had been screened by an itinerant doctor ?from the city? who had arranged for the necessary surgery and so forth. I have not been able to gather whether there are others out there who may have been caught up in this medical sweep. The vastness and the remoteness of much of the country will likely keep me from ever knowing much more.
Two of them lived near one another and knew of each other. The other two lived quite some distance away. None of the four men were using any verbal communication at the times that I first saw them although they all appeared to be active within their families and communities. I?ve always found the indigenous people to take great care of their family and to diligently look out for those who are sick or in need. The primary communication mode for each was via gestures and facial expression. Mouthed speech was also being used but it seemed to be secondary. One of the Indian men was ?fortunate? in that a fairly elaborate gestural language was part of the culture anyway (this was easy to see after being in the village for little more than an hour as I was reminded of the stereotype of Italians using excessive gestures while talking!). Writing was not an option for any of the men as none of them could read or write. I suppose drawing could have been an option, but none of them had naturally gravitated toward this as far as I could learn.
The first laryngectomee that I met went by the name Ical (that is my best guess at spelling his name and I do not know how to translate it into English). I was forced to go through my line of thinking in dealing with his communication and then met the other three over the next few months. The situations were fairly comparable as was my thinking on best means of communication for all of them.
After my initial shock at seeing a laryngectomee in the Andes, I jumped into my usual, non-speech pathology role, which involves talking with the local women to establish relationships that can then be built upon and used for subsequent education programs related to healthcare, farming, and other issues. But I kept watching Ical whenever I could. Being in the village for several weeks I was able to see him quite often and watch how he got along. While he did quite well, and while he and those in the village had long ago figured out how to communicate with each other, I couldn?t resist getting to know him. After taking a few more days to ease into a relationship with him, I was able to pull him aside with a local translator and get more of his story. His surgery had been done about 4 years prior, mainly because he was having trouble breathing during exertion in the fields. He?d been taken to the city in a car with a doctor who stayed with him much of the time while in the hospital (a stay that lasted for about 3 ? 4 weeks as best I could understand). He returned with this same doctor and has been healthy ever since. I asked if he would be interested in having a voice. He was. I explained it might or might not be possible, given the fact that I didn?t know what resources I could track down.
It wasn?t until a few weeks later when we went back to a larger city that I could get on the phone and the Internet to make contacts, do some investigating, and think through the situation. Tracheoesophageal speech was out of the question for many reasons, most of them fairly obvious. We had no clear cut way to have a puncture done. Even if we had, I am about 100% sure that I could never convince Ical to make the trip to the city so someone could put another hole in his neck. He?d had enough of ?modern? medical care based on what he?d told me, and in fact was considered both ?extremely brave? by some villagers and ?somewhat foolish? by others for even going for the first surgery. Cost was a concern. These are not people with additional money to spend on prostheses or visits to a health professional. Ready access to care was also an issue. Although I?ve come to learn that folks in rural parts of other countries such as the United States can make it work, this is not just rural. It is folks living some distance from care providers and having no quick means of transportation available as needed. Independence from care providers was a necessity, as was low cost.
Esophageal speech seemed a possibility. The ability to avoid another procedure and independence from technology and care providers were attractive. There were two main problems. First, I had never taught anyone esophageal speech before. Some of my contacts had passed along information about how to do this, but my confidence was not high and I really would have liked a mentor to show me the way (and not just over the phone!). Secondly, I didn?t know that I would have the time to actually engage in the therapy itself, even if I knew what to do. I knew that if my usual schedule were followed, I could be uprooted from the village at almost a moments notice. At best I knew that we would be there for only a month more or so. My group moves around periodically and once we leave a locale, it is not unusual for us to be away from there for months at a time or perhaps forever.
The electrolarynx might have worked for Ical and I had several folks offer to get one down to us to work with. However, I was fearful of the dependence on something mechanical and which also relied on batteries that either had to be purchased or recharged. Again cost would be an issue (although several offers of free devices were made). However, the access to electrical power to recharge batteries was of bigger concern. This was not available to Ical, at least not on a readily accessible basis. As it turns out, this issue of access to electricity would not be an issue for two of the other gentleman that I saw. In addition, I was concerned about whether the electrolarynx would make it through the fairly rough handling that I envisioned with all four of my guys. They all worked hard (three as field farmers and one as a keeper of domesticated animals) and I kept picturing the electrolarynx sliding down the steep slopes upon which these folks made their homes and worked!
Thankfully, I was put on the trail of a pneumo-larynx. To be quite frank, I hadn?t heard of such a device before (or if it was mentioned during my training, I didn?t remember). A contact was made back in Mexico and a pneumo-larynx was eventually sent to me. It took about 3 months and a donkey ride down the mountain to get it! I appreciated it?s simplicity and was amazed by the tone of the device. The children in the village thought it was great fun to blow through it with their mouth in a musical, rhythmic way. Ical latched onto it fairly quickly. This was another bonus ? the learning was fairly quick. Within about two weeks or so he had figured out how to use it at a fairly proficient level, at least so the interpreter told me. This was fortunate as we moved out about a week or so after that. I was able to leave him with a very large number of replaceable reeds. We were able to work out a means of delivering food items and other items, which will now include the reeds!
My experiences with the other three men were similar in many respects. In each case, we were able to get a donated pneumo-larynx and fortunately these bright men were able to make them sing! It was such a joy to see them use their new voice with their children, wives, and friends. I still have some fear that the devices might be lost or broken. However, we now have some means of establishing a link back to these folks and since I moved on to another country I was able to deliver a back-up pneumo-larynx to each of them. After leaving Ical and eventually meeting laryngectomee #2 (his name is even harder to translate, but would best be written as Ashlal), I figured out that I needed to have a way to tie the device around the neck. It needed to be available on their body somewhere, but also they needed to be able to drop the device to free up both hands without fear of it landing on a hard rock, falling down a slope, or dropping into a crevice from which it couldn?t be retrieved.
The simplest device made
the most sense in these cases. Throughout this time with the four men, I
sometimes wished that they could be in another life with other options for
treating their disease and re-establishing voice. But really, those are only
fleeting thoughts that arise when I am at my most frustrated. For these men,
their villages had accepted them even without a new voice. They were treated
quite well prior to my arrival. I was pleased to be able to help them and they
truly seemed to be thankful. I was grateful for the contacts made with folks
from around the world that helped me to help them. As much as I learned about
electrolarynges and tracheoesophageal speech, I have come to realize that one of
the oldest and the simplest options for talking after a laryngectomy has a vital
role in certain situations and in certain parts of the world.
The last time
I talked to you,
I ended my journals where I began?
Life goes on.
Our lives are not always about the cancer nor its long tentacles which insinuate themselves into our everyday life. It is oftentimes a strange and difficult journey but once you get into the spirit of things it can be both eye-poppingly amazing and wondrously satisfying- despite the odds! Case in point?two roads?which given time, Dear Reader, will converge.
First and foremost, my son and only child was married Sept 17, 2005 to an absolute sweetheart of a woman- she was new in his life when I first got sick and she has never wavered in her support of either one of us. She is such a pretty sweet young thing I am not sure who is more in love with her, my son or myself- she is truly the daughter I never had. At their wedding- a kind of down-home-ain?t those kids as cute as a bug in a rug- type thing when it?s a bunch of old Maine Yankees throwing the party- I danced with my son to the Cyndi Lauper song ?True Colors?. I will never be the same.
I love his adaptability. There were months when I had no voice at all but he was the first to suggest that my Servox batteries could be hidden if I talked too much. He was the first to tease me and try it out himself and is always the first to defend me if I am uneasy.
The love and support of my family and friends has always been a major bulwark in the ongoing process of recovery and rejuvenation. Rejuvenation is an interesting word?I AM NOT getting younger, but I have been forced to re-invent myself repeatedly?perhaps I am not rejuvenating but reincarnating!
Well, I USED to like to talk A LOT, but I can?t. Not the same way anyway. And I can?t do imitations or voices?.I can?t whisper or shout or sing Christmas Carols or laugh out loud. I can write down words that try to convey those expressions and sometimes I do it very well, but I can not use that certain low voice right in your ear that says I love you nor laugh out loud at your jokes. I can?t murmur. I no longer have sweet undertones.
So it was a bit of a shock to walk into the Park Plaza in Boston and hear that distinctive buzz and rasp all around me. I heard myself at every turn. I saw myself and I was nonplussed. You could have knocked me over with a feather. And yet I was strangely disquieted. I couldn?t possibly sound like these people. Face it, Donna, we have seen the enemy, and it is us! I still was hearing my old voice in my head and it was very hard to accept that wasn?t me anymore. I knew it?but sometimes it was just too much sitting in a class with all those terribly well-meaning SLP?s?I mean no disrespect-you all were great- but we have lost our voice and trying to learn to speak again is a mighty task and one I hope and pray you never have to learn. It was hard for me to be the center of all that concern and well-meaning pity.
I talk very well using my Servox and love my new T-shirt from Jim Lauder that says ?Servox?We have ways of making you talk.? I loved being around people who didn?t blink an eye or struggle to understand me, but I was disquieted. And I was disquieted that I was disquieted. I was uncomfortable seeing so many mirror images of myself coughing and clearing and discreetly and bravely managing while we buzzed and burped and otherwise talked and laughed and flirted and generally carried on as if nothing was amiss. Because something is amiss and it is my voice- it is amiss-ing!!
Although I admit that I bobbed and dodged a bit , the experience was invaluable. I look forward to the next IAL?I suspect I won?t be so taken aback by the many mirror images of myself.
By the way, at my son?s after reception party, when I finally kicked off my shoes and had a glass of champagne, I was exchanging ripostes with the best man and my son and realized none of the guests still left nor my son even thought twice about my voice. It is, now, who I am.
by Pat Wertz Sanders, WW Cruise Coordinator
(See our Cruise Index HERE)
The Inhealth "Stars and Stripes" Cruise Contest changed their Grand Prize from the cruise we originally had planned for after the 2006 Biloxi IAL to the same type accommodations for two on our WW Alaska Cruise in June 2006. Inhealth was able to donate $1,000 to the IAL from extra tickets sold and they drew for the winner at the WebWhispers dinner held on Friday evening at the Boston IAL.
Successful New England/Canada Cruise
! SPECIAL !
TIP # 71: STOP YOUR STOMA FROM SHRINKING
This is a benefit of wearing the Barton-Mayo button or Larytube. It can help your stoma stay the proper size as determined by your doctor. Other alternatives might include a surgical ?revision? of the stoma. Some people just sleep with a Larytube to maintain the opening.
JB?s note: I have heard various coin sizes referred to as the ideal size for a stoma, but I don?t think I?ll be trying any to see which one fits. Stoma size really varies depending upon the individual and the surgeon. Be sure to check with your surgeon or SLP if you think there is a problem.
TIP # 72: CARRY YOUR MEDICAL HISTORY
Keep copies of everything but try to keep it as simple as possible. If you go to a comprehensive cancer clinic, you won?t need it there. But your hometown internist, local otolaryngologist (ENT) or dentist will appreciate having it. Be sure to give it to the receptionist or nurse when you sign in. This way there?s a chance the doctor will be a little more prepared when she sees you.
JB?s note: I include only the cancer-related treatments or new developments as my doctors already have my earlier history. If it were for a new doctor, I?d list everything.
TIP # 73: COPE WITH STARTUP STICKING
When your newer model Advantage prosthesis won?t work right away, try inserting the prosthesis brush to free the valve. The manufacturer is working to correct the problem, but according to Larys who have it, not having to use Nystatin is worth this small bit of trouble for now.
TIP # 74: CONFIRM IT WITH YOUR LISTENER
When giving information over the telephone, ask your listener to read the information back to you. Often, they?ll do it without your asking. Many people, not just Larys, are not understood well on the phone. Telephone lines just don?t carry the same amount of data that "in person" communication does.
TIP # 75: BLAME IT ON YOUR THYROID
If you?re feeling out of sorts, depressed, have weight concerns, etc., it could be a thyroid problem. Laryngectomy surgery or radiation often affects this gland. It can?t hurt to ask your doctor for this simple blood test. Obviously, many problems can make you feel really bad, including radiation sickness, ?regular? depression, etc., but your doctor can check those things out to see what is really bothering you.
JB?s note: I was fortunate to my doctor?s nurse practitioner spot the possibility of thyroid trouble. She ordered the tests for me.
TIP # 76: ENJOY CHOCOLATE AGAIN
Chocolate can taste very bitter to radiation and chemo-challenged taste buds. And when it?s also coated with wax, it?s inedible. It?s hard to know what is going to work, so you?ll have to experiment, but Godiva and Toblerone have been recommended highly as going down smoothly. The lighter chocolates are much more tolerable than the darker ones.
JB?s note: No more See?s chocolates for me--very sad for a native of California, but the Godiva is great, including ice cream products. Also any kind of hot cocoa mix can be good if you use only half or less of the package and use milk instead of water.
TIP # 77: SAVE YOUR SEAL
When the seal is blown on your baseplate, it might be possible to save the conversation by pressing through your clothing onto the leaking edge. When there is a break in the conversation, you can go do your repair work.
JB?s note: At least one Lary has found himself in a habit of holding down the baseplate. This can create a distraction for your listener.
TIP # 78: KEEP EYE CONTACT
Eighty percent eye contact is the norm for conversation. Larys can lose eye contact because they?re concentrating so hard on speaking that they roll their eyes back. This is difficult for the listener to watch, and communication breaks down. To break the habit, talk to the mirror while looking yourself in the eye. You can draw a soap line to focus on.
TIP # 79: SPEAK UP PLEASE
Open your mouth wider, and your speech will be louder. If you don?t believe it, try practicing both ways. Also, you may be losing the last couple of words in a sentence because you are running out of breath. Break your sentences up into shorter phrases if this is a problem.
JB?s note: After I read about opening the mouth wider, I realized I had been muffling myself because I didn?t want anyone to see my missing teeth.
TIP # 80: USING AN EL WHEN YOU WEAR A HEARING AID
The interaction between your hearing aid and your electrolarynx can produce distorted, amplified sound. If this is happening to you, try placing the EL on the side of the neck opposite your aided ear. You can also try placing the EL on your cheek or use the intra-oral straw device that came with your EL. If none of this works well, see the audiologist at your cancer clinic or center-- usually in the speech pathology department. Let the SLP and the audiologist know what the problem is ahead of time so they can confer or see you together.
Are you one of those people who has overcome obstacles before? Does that experience affect how you cope now? Write comments in your book on any of the tips, glue in newspaper articles, or arty magazine pictures. Have you gone back through and reviewed your earlier entries? Have you noticed the progress? Have you developed new ideas and methods?
REPORTS FROM ROBOCOP?S REPOSITORY
News You Can Use ... by Officer Scott Bachman
Hurricane Katrina has devastated the lives and property of countless families. Although this singular act of nature created unimagined results it is still important to be prepared for any type of emergency or disaster, be it natural or man-made.
The following information is meant to be a guide and your own needs may require other supplies or protocols.
If you believe what just occurred in Southeast Texas, New Orleans, Biloxi and other areas along the Gulf Coast could not happen to you, please think again.
Proper planning does beat poor performance, every time.
Review the checklists in this document.
Gather the supplies that are listed. You may need them if your family is confined at home.
Place the supplies you'd most likely need for an evacuation in an easy-to-carry container. These supplies are listed with an asterisk (*).
Emergencies happen anytime and anywhere. And when an emergency strikes, you may not have much time to respond.
A highway spill of hazardous material could mean instant evacuation.
A winter storm could confine your family at home. An earthquake, flood, tornado or any other emergency could cut off basic services--gas, water, electricity and telephones--for days.
Store water in plastic containers such as soft drink bottles. Avoid using containers that will decompose or break, such as milk cartons or glass bottles. A normally active person needs to drink at least two quarts of water each day. Hot environments and intense physical activity can double that amount. Children, nursing mothers and ill people will need more.
? Store one gallon of water per person per day (two quarts for drinking, two quarts for food preparation/sanitation)*
? Keep at least a three-day supply of water for each person in your household.
Store at least a three-day supply of non-perishable food. Select foods that require no refrigeration, preparation or cooking and little or no water. If you must heat food, pack several cans of Sterno or a small propane style burner (with several propane bottles). Select food items that are compact and lightweight.
*Include a selection of the following foods in your emergency Supplies Kit:
? Ready-to-eat canned meats, fruits and vegetables
? Canned juices, milk, soup (if powdered, store extra water)
? Staples--sugar, salt, pepper
? High energy foods--peanut butter, jelly, crackers, granola bars, trail mix
? Foods for infants, elderly persons or persons on special diets
? Comfort/stress foods--cookies, hard candy, sweetened cereals, lollipops, instant coffee, tea bags
First Aid Kit
Assemble a first aid kit for your home and one for each car. A first aid kit* should include:
? Sterile adhesive bandages in assorted sizes
? 2-inch sterile gauze pads (4-6)
? 4-inch sterile gauze pads (4-6)
? Hypoallergenic adhesive tape
? Triangular bandages (3)
? 2-inch sterile roller bandages (3 rolls)
? 3-inch sterile roller bandages (3 rolls)
? Moistened towelettes
? Tongue blades (2)
? Tube of petroleum jelly or other lubricant
? Assorted sizes of safety pins
? Cleansing agent/soap
? Latex gloves (2 pair)
? Aspirin or non-aspirin pain reliever
? Anti-diarrhea medication
? Antacid (for stomach upset)
? Syrup of Ipecac (use to induce vomiting if advised by the Poison Control Center)
? Activated charcoal (use if advised by the Poison Control Center)
Contact your local American Red Cross chapter to obtain a basic first aid manual.
There are six basics you should stock in your home: water, food, first aid supplies, clothing and bedding, tools and emergency supplies and special items. Keep the items that you would most likely need during an evacuation in an easy-to-carry container--suggested items are marked with an asterisk(*). Possible containers include a large, covered trash container, a camping backpack, or a duffle bag.
Tools and Supplies
? Mess kits or paper cups, plates and plastic utensils*
? Emergency preparedness manual*
? Battery-operated radio and extra batteries*
? Flashlight and extra batteries*
? Cash or traveler's checks, change*
? Non-electric can opener, utility knife*
? Fire extinguisher: small canister, ABC type
? Tube tent
? Matches in a waterproof container
? Aluminum foil
? Plastic storage containers
? Signal flare
? Paper, pencil
? Needles, thread
? Medicine dropper
? Shut-off wrench to turn off household gas and water
? Plastic sheeting
? Map of the area (for locating shelters)
? Toilet paper, towelettes*
? Soap, liquid detergent*
? Feminine supplies*
? Personal hygiene items*
? Plastic garbage bags & ties (for personal sanitation uses)
? Plastic bucket with tight lid
? Household chlorine bleach
Clothing and Bedding
*Include at least one complete change of clothing and footwear per person.
? Sturdy shoes or work boots*
? Hat and gloves
? Rain gear*
? Thermal underwear
? Blankets or sleeping bags*
Remember family members with special needs, such as infants and elderly or disabled persons.
? For Baby*
o Powdered milk
? For Adults*
o Heart and high blood pressure medication
o Prescription drugs
o Denture needs
o Contact lenses and supplies
o Extra eye glasses
? Entertainment--games and books.
? Important Family Documents - Keep these records in a waterproof, portable container.
o Will, insurance policies, contracts, deeds, stocks and bonds
o Passports, social security cards, immunization records
o Bank account numbers
o Credit card account numbers and companies
o Inventory of valuable household goods, important telephone numbers
o Family records (birth, marriage, death certificates)
SUGGESTIONS AND REMINDERS
? Store your kit in a convenient place known to all family members. Keep a smaller version of the Emergency Supplies Kit in the trunk of your car.
? Keep items in air-tight plastic bags.
? Change your stored water supply every six months so it stays fresh.
? Rotate your stored food every six months.
? Re-think your kit and family needs at least once a year. Replace batteries, update clothes, etc.
? Ask your physician or pharmacist about storing prescription medications.
CREATE A FAMILY EMERGENCY PLAN
To get started...Contact your local emergency management or civil defense office and your local American Red Cross chapter.
? Find out which emergencies are most likely to happen in your community.
? Ask how you would be warned.
? Find out how to prepare for each.
Meet with your family.
? Discuss the types of emergencies that could occur.
? Explain how to prepare and respond.
? Discuss what to do if advised to evacuate.
? Practice what you have discussed.
Plan how your family will stay in contact if separated by an emergency.
? Pick two meeting places:
A location a safe distance from your home in case of fire.
A place outside your neighborhood in case you can't return home.
? Choose an out-of-state friend as a "check-in contact" for everyone to call.
Complete these emergency steps.
1. Post emergency telephone numbers by every phone.
2. Show responsible family members how and when to shut off water, gas and electricity at main switches.
3. Install a smoke detector on each level of your home, especially near bedrooms; test monthly and change the batteries two times each year.
4. Contact your local fire department to learn about home fire hazards.
5. Learn first aid and CPR. Contact your local American Red Cross chapter for information and training.
Meet with your neighbors.
Plan how the neighborhood could work together after an emergency. Know your neighbors' skills (medical, technical). Consider how you could help neighbors who have special needs, such as elderly or disabled persons. Make plans for child care in case parents can't get home. Use Block Watch strategies to maintain order if necessary.
Remember to practice and maintain your plan.
The Federal Emergency Management Agency's Community and Family Preparedness Program and the American Red Cross Emergency Education Program are nationwide efforts to help people prepare for emergencies of all types. For more information, please contact your local or State Office of Emergency Management, and your local American Red Cross chapter. Ask for "Your Family Emergency Plan" and the "Emergency Preparedness Checklist."
Listen to NOAA Weather Radio or local radio or TV stations for evacuation instructions. If advised to evacuate, do so immediately.
Bits, Buts, & Bytes
Like perhaps many of you, I have long been searching for a simple, reliable, user-friendly, & inexpensive FAX software to use on my PC and laptop. (I have found the FAX software provided with Windows XP to be ... ummm ... nicely put .. somewhat LACKING.) Well, I think my search is over & it is worth recommending to those of you who do not yet have fully satisfactory FAX capabilities on your PC.
The software is called "MightyFax" and is available online from:
You can "buy it" immediately for downloading and use OR you can download, install, and use a trial copy for 30 days free of charge, to make sure you like it. If you do, you may then purchase the complete version for a one time fee of $19.95. The download is small (under 3.0 MB), is "idiot-proof" to install, and it works great. The set-up, send, and receive functions are explained clearly and, best of all, it can send ANYTHING via FAX that you can normally send to your printer ... that is, letters, notes, graphics, forms, etc. In short, if you can PRINT IT, "MightyFax" can send it as a FAX.
I am normally loath to use this venue to recommend ANY commercial products, but in this case I was so impressed that I felt an exception might well be justified for "MightyFax". The above LINK will give you all the details you'd like to know if you are interested. I hope this "hint" is helpful to those members needing or wanting a "quick and easy" FAX capability on their computers.
(2) Question: Many times, while on the Internet, I get annoying Java script error messages that pop up time after time. They ask if I want to continue displaying Java scripts, but no matter which button I click, the result is the same. I have gone into the Advanced tab under Internet Options and de-selected the "Display a notification about every script error" option, to no avail. What can I do to exorcise these absolutely useless messages?
Answer: You came very close to solving your own problem when you unchecked "Display a notification about every script error." In this very same menu, all you need do is put a check next to "Disable Script Debugging" and you will cast out the demon and be able to browse an Internet chock full of Java errors without being hounded to debug a single faulty Java script.
(3) Evacuating Houston: In reaction to Hurricane Rita, at 05:30 AM on 22 September, your humble Webmaster began to evacuate Houston by car for refuge with an old friend in Austin, TX (a mere 202 miles away). By 2:00 AM on 23 September (20.5 hours later), I had made it as far as Brenham, TX ... one hundred miles from home ... making an average of 5 miles an hour. I then pulled off the highway, took a 4 hour nap, and resumed my travels (and a hunt for gas), eventually arriving at my friend's house at 1:30 PM, thus completing the 202 mile trip in about 32 HOURS! The return trip, on 28 September, took only 3 hours and 10 minutes. My conclusion: Houston needs to "refine" its evacuation planning!! LOL! Live and learn! My thoughts and prayers are with all the Katrina and Rita victims ... and I consider myself blessed in being spared the wrath of both. I will continue to "knock on wood". Best to all!
ListServ "Flame Warriors"
tries to gain tactical advantage in battle by asserting that he is, or was
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 32 new members who joined us during September 2005:
Sharell Babin - Caregiver
Pam Biagio - Caregiver
Washington Boro, PA
Lynn Carrier - SLP
Lake Worth, FL
Valley Village, CA
Stanley Friedman - Caregiver
Pacific Palisades, CA
Kathy Gunter - SLP
Michelle Joyce - Larynx Cancer Patient
North Lauderdale, FL
JoAnn Levy - Caregiver
Sutter Creek, CA
Jennifer Rettig - SLP
Highland Lakes, NJ
Port Orange, FL
Bushra Sameer - Caregiver
Scarborough, Ont, Canada
Joy Schiro - SLP
Teignmouth, Devon, UK
Misty Stanfill - Caregiver
Deerfield Beach, FL
WebWhispers is an Internet-based laryngectomee support group.
It is a member of the International Association of Laryngectomees.
The current officers are:
Pat Sanders.............VP- Web Information
Terry Duga..........VP- Finance and Admin.
Libby Fitzgerald......VP- Member Services
Dutch Helms.............VP- Internet Services
WebWhispers welcomes all those diagnosed with cancer of the
larynx or who have lost their voices for other reasons, their
caregivers, friends and medical personnel. For complete information
on membership or for questions about this publication, contact
Dutch Helms at: firstname.lastname@example.org
? 2005 WebWhispers