|Name Of Column||Author||Title||Article Type|
|Musings From The President||Murray Allan||Herb Simon-Casey Cooper||News & Events|
|VoicePoints||Dan H. Kelly, Ph.D.||Master Clinician||Education-Med|
|WebWhispers' Comments||WW Attendees Report||Impressions From IAL 2004||Experiences|
|Bits, Buts, & Bytes||Dutch||Computer Tips||Experiences|
|Lary Laffers||Dorothy Lennox||Unusual Stoma Cover Request||Experiences|
|Welcome New Members||Listing||Welcome||News & Events|
Murray's Mumbles ... Musings from the President
Casey-Cooper Award Presented to Herb Simon of Silver Spring, MD
It is a great pleasure and honor to report that Herb Simon of Silver Spring, MD is the 2004 winner of the prestigious Casey-Cooper Laryngectomee of the Year Award. Herb was presented with an engraved pewter bowl as an acknowledgment from WebWhispers of his stellar efforts in the care and support of his fellow laryngectomees since 1995. This award was presented at the WebWhispers banquet held at the July IAL convention in Anaheim, CA.
Presented with a Certificate of Honor was our Vice President of Member Services, Libby Fitzgerald, who was recognized by her fellow WebWhispers members for her outstanding services to all laryngectomees.
The second Certificate of Honor, was presented to Dawn Douglas, the "significant other" of the honoree, Mark Crowe, who sadly passed away due to a motor vehicle accident in June. Mark will always be remembered for sharing, caring, and his superb good humor. Mark's passing was a tragic loss to all that knew him and especially his fellow laryngectomees with whom he was very close.
The Golden Sage Award was presented to Dorothy Lennox of Luminaud. Dorothy's knowledge of matters from dealing with insurance to use of equipment for laryngectomees is truly laudable.
Our Audio/Visual expert, Gary Miner Sr. was presented with the Audio Visual Expert Award. Gary's expertise in these matters is incredible. Not only does he work day and night for the IAL but he is always on call to lend his audio and visual skills available to WebWhispers. He is indeed a "sound" choice for this Award.
Our Long Distance Lary Award was presented jointly to Jose and Regina Cruz who traveled all the way from Sao Paulo, Brasil (Brasil) just to be with us. I would also like to recognize Marianne Peereboom of the Netherlands and Lorrance Lancaster from Australia who have previously won Awards for this category.
For those who were at the WW banquet I would like to mention my difficulties during the presentations. I am suffering from spinal stenosis in which the spinal bones are pressing against the nerves which control my left arm and right leg, which are both giving me problems. I am taking copious quantities of painkillers to manage. The good news is that I'll be receiving spinal surgery to correct the problem within the next couple of months and the prognosis is excellent.
Take care and stay well,
Note: If you have not yet seen them, we have set up two pages on the web site that contain over 100 pictures taken at IAL 2004 in Anaheim. They begin HERE. Enjoy!
? 2004 Dan H. Kelly, Ph.D. ]
coordinated by Dr. Dan Kelly, Retired Associate Professor ( firstname.lastname@example.org )
Department of Otolaryngology, Head & Neck Surgery
7700 University Court, Suite 3900, West Chester, OH 45069
THE MASTER CLINICIAN? August 2004 Dan H. Kelly, Ph.D. Copyright
IMPRESSIONS FROM IAL 2004 IN ANAHEIM, CA
Paul & Mary Ann Winkle
Oak Forest, Illinois
We just wanted to say what
a wonderful time we had in Anaheim. We are both so glad we went;
we learned so much about laryngectomees, and met the most wonderful people from
all over the world. It was so good to put faces with the names we've seen on
the computer on the WebWhispers site. We also want to commend the board on
doing such a beautiful job with the hotel, the banquet, the seminars ...
everything was right on the money. The hotel was top notch; the food was
outstanding, and the interaction with the other larys and their spouses was
something we will never forget.
The vendors couldn't have been nicer, and we got to see all the new products and things related to laryngectomees ... things we didn't even know about. They all took a lot of time with us, we never felt rushed.
We made a lot of new friends that we plan on staying in touch with. We can't wait for Boston next year!!! WOW, what a great experience. Thank you so much.
I had the good fortune to attend the Voice Institute in Anaheim and learned so much that I highly recommend it to others, especially laryngectomees who attend for the first time because they may apply for the Batten Scholarship, which is $580. (This did not cover all the costs in California, of course, but we did get some freebies, which I'll explain later.)
First, let me tell what the sessions meant to me in terms of my own voice. I have a TEP prosthesis and would like to learn esophageal speech, but was trying to put the cart before the horse, so to speak. My voice sounded watery, so we decided to work on that first. I was assigned a Ph.D., two graduate students in training, and an experienced lary to my team. During two sessions a day, Denise and Jamie would come work with me in my room, while the two guys would stop by for encouragement or instruction. At other times, we attended interesting lectures.
Since I am going hands-free soon, I discovered a method of gently moving an index finger about 3/4 of an inch above my stoma while talking, which got rid of the watery sound. However, the graduate students figured out another solution that we all laughed about. When I tilt my head slightly to the right, my voice doesn't sound watery at all. This is a perfect solution for me when I'm on the telephone.
Once we thought about the telephone, we had the idea that I should call some people and ask questions. I'm not shy at all because I'm a former reporter, so I called 12 places, mainly restaurants, and I talked to many Hispanics and Asians. This was a wonderful exercise. I asked about hours, if reservations were needed, and so forth.
I had to repeat myself in two or three instances, but found out halfway through this exercise that slowing down would help. Since we were three women, we decided I should call hair salons and tanning places for prices, hours, etc., just for fun.
The graduate students also helped teach me how to speak loudly and softly, although they wouldn't allow me to whisper.
The other guy in my group spoke with a Servox. At our closing session, he demonstrated that he was a natural at esophageal speech. All our teachers were most impressed with our progress. I plan to work on esophageal speech with my own SLP here in Little Rock. She was jealous she couldn't attend this year's events because she has done so in the past.
Besides some hard work, I made many friends, and the fellowship of other larys is great. Sometimes I would meet someone a second time out by the pool, on the elevator, in the restaurant, or at a banquet.
Many of our medical suppliers were represented and provided us with free food and cocktails. California was beautiful this time of year, so parties were held outdoors.
The experience was truly magical for my voice, my self-esteem, and just for a break from the ordinary.
The bad news is that the IAL meeting was held just a week to soon. It appears that the weather which everybody had been hoping for out here in California has now arrived. It was in the low 90's yesterday and expected to reach the mid 90's today! Oh well!
Sorry to hear that Dr. Stone will no longer be Director of the Voice Institute, he was very helpful to me while I was attending.
Not The Last
San Francisco, CA
This was my first international convention. I did go to the CAL convention in Reno last year. I found the convention in Anaheim very informative from the different speakers, and I gained a lot of info from the medical suppliers about different products. The WebWhispers dinner was very well done, and so was the dinner the last night. The last night had a special guest and it was Nicole Robinson of the "West Wing", and it made my night as I got to dance with her. I used my electrolarynx a lot, until I was asked why I did not talk as I did have a prosthesis. I did not have a good answer, other than I was used to using the electrolarynx. After some persuasion from the gentlemen from Florida, I used my voice for the rest of the convention. God willing I will be in Boston next year for another smashing IAL convention. MANY THANKS to all the volunteers that made this convention possible.
Terms with being a Lary
I learned a couple of things there. First my quick story. July 14 is my lary anniversary. Seven years ago I had a list of things I was going to do but cancer had decided to cancel those events for me, at least all those which centered around Anaheim, CA. The neat part is I finally made up for that and did them after the convention, except for trying to surf. I feel like I am picking up where life left off.
Second, the hard thing I had to come to terms with is being a lary. I thought there would be many limits. After meeting with these larys I found out different. I found myself encouraged and not limited as I as I had thought. Just use common sense during times of insanity and it will be OK.
At the Voice Institute as an LT, I felt welcome and as if belonged there all the time. Instructors, mentors and all made me feel equally as important. The program was great and I learned a lot of what is going on with me and in me.
Since it was my first time coming I was overwhelmed by what was there. That makes it hard to pinpoint down to one thing.
on the IAL 2004
Pat Sanders asked those of us attending the IAL Convention to jot down some of our memories to share with those unable to attend. While I was in Anaheim I kept thinking of that. Before I get into the meat of my memories I must share two things with you.
First, I remember when I was a boy and someone asked my dad, Lowell, why he did favors for people who had no way of ever returning the favor. My dad told the person that his father was a Baptist preacher and that they were very poor, especially during the depression. My dad said he never could have made it through college and medical school without a lot of help. He said that one of the people who helped him was a doctor in the town they lived in. He said he had once asked the doctor how he would ever be able to pay him back for all that he had done. The doctor told him that he couldn?t. It would not be physically possible for Lowell to ever return the favors to him. However, after he had made it through medical school, and had become a doctor, he would have plenty of opportunities to help other people. Most of those he helped would have no way to pay him back so it would be pay back for those people who had helped him many years before.
Now, on to my memories. I will have to give you a little history first. I attended the IAL Convention in Vancouver. It was my first time to really participate in very many things. I had attended Nashville, for the Voice Institute, but I did not a lot about what was going on in the Annual Meeting. My primary focus in Nashville was to see if I could learn a little about esophageal speech. I did, and it was a success. However, Vancouver was the first one where I really participated in everything. One of the items on the program in Vancouver was a swimming demonstration. Prior to my laryngectomy I had enjoyed the water. I liked to swim, I liked to dive, none of which I was very good at; but I enjoyed it. Anyhow, I went to the swimming demonstration in Vancouver. I watched Elizabeth Finchem, Pat Sanders, Ian Milne, and several others swimming. I was just blown away. I had no bathing suit there, so I took off my shirt and shoes, rolled up my pant legs, took my billfold out, and jumped in! It was almost an epiphany. The next year, in Atlanta, I was one of the demonstrators. Now, I don?t swim a lot, but I do when I want to.
This year, there was no swimming demonstration listed on the program. Two or three of us who swim talked about when we would do it, or who would do it, and when would it be. At the end of the delegates? meeting there had still been no mention of the swimming demonstration, so, being the bashful person I am, I jumped up and asked Bob Mehrman (IAL President) when the swimming demonstration was? He asked me when did I want it? I knew my schedule, but not necessarily anyone else?s, so I said that we would do it 12:30 that afternoon. The weather is a little cooler in Anaheim than it is in Alabama, and I?ve gotten older and don?t enjoy cold-water swimming like I once did (which I never did), so I picked a time for maximum warmth that fit my schedule. This may have been the biggest mistake I have made in a log time. My dear friend Pat Sanders, who some day will get over being mad at me, had a session scheduled on Newsletters for 12:15 to 1:30. She was not happy. One of her nicer comments was that she hoped the attendees knew that not everyone in Alabama was as dumb as I was.
Anyhow, back to the IAL and the swimming. After I announced the time, I talked to several about the swimming. I told them to wear their swim suits, and be there at 12:30. When I got to the pool Ian Milne was already there and said that the water was great! Shortly after I got in, Elizabeth Finchem arrived and joined us in the water. By now there were two men there watching to see how we were swimming. One of them, Robert Robinson, from Montreal, and told me about being a long distance swimmer prior to his operation, and how much he missed the swimming. He was soon in the pool! Paul Skiora, from Tucson had told me how much he enjoyed swimming in Tucson, and down in Mexico. He did almost the same thing I did in Vancouver, shed his shirt and shoes, and was in the water.
We swam for a while, with Paul and Robert getting more and more confident. We had another swim session on Saturday, before the fun show. In the second swim session Robert was able to go across and back on one breath. Both first-time swimmers were ecstatic at the fact they were back in the water. I?m pretty good with words, but I don?t have the words to describe the looks on their faces. It was part glee, part elation, part satisfaction, and pure joy.
I know that helping someone get back in the water is not the same as teaching them how to do esophageal speech, or how to use a pneumatic device, but it?s something that was done for me, and now I?ve done it for someone else. This is what the IAL is all about, passing down, from one to another, the shared knowledge of how we do those things we?re not supposed to be able to do.
Now for some random thoughts on the 2004 IAL Convention or what did I learn while I was having so much fun. These are in no particular order, duh ? they?re random!
I learned a new trick on maintaining a seal for my hands-free device, actually several. First, make sure the skin around the stoma is completely dry before applying any glue. After it is dry do not stick your fingers on it to test it. Your finger tips have natural oils that interfere with the glue process. Second, let the glue dry for at least five minutes before placing the hands-free valve housing. The drier the glue is, the better it works. I had been letting the glue dry for four minutes, after I heard Eric Blom?s lecture I went to five minutes. I can tell the difference. Third, I was talking with Richard Crum about wearing a tie. He wears one all the time, I usually wear one when I?m working. I told him I did not button my top button, or pull the tie knot all the way up. Richard said he used his collar to keep the valve and valve housing from bulging out, and to help maintain the seal. I tried it ? it works.
I met a man who has an UltraVoice and is a really good speaker. He is the first laryngectomee I have met in 14 years who is a good UltraVoice speaker. UltraVoice gets a lot of bad press, we need to be aware of the good as well as the bad.
There was a pneumatic device user there, Sid Young. He has a great voice, and is very adept with the device. It is not hands-free, however it produces the best voice of any of the non-TEP types. I had seen an excellent user several years ago in Seoul, Korea, Sid is the second excellent user. I have wondered for some time why the pneumatic device is not more popular in North America than it is. I think we may be overlooking a very viable alternate means of speech. If I did not have a TEP I would probably use esophageal speech and/or a pneumatic device.
There is no common denominator among laryngectomees. Certainly, most of us, or least a bunch of us, have a laryngectomee as a result of smoking. However, it is not universal. At least one individual there did not have cancer, hers is a result of an accident. A number of others have had non-smoking related cancer. There are old and young; white and black, and all the shades in between; rich and poor; male and female; folks in great health other than being a neckbreather and those who have all kinds of ailments; Democrats, Republicans, and those with no clue; in short ? a microcosm of our pluralistic society.
I spent time with some old friends, made new close friends, and missed several who were not there. One of my friends, Mark Crowe, is tragically not with us anymore. I missed his ribald jokes and the Masonic stories we would have shared. A couple of friends were not there who are going through new treatments. I sure hope they make Boston next year.
I enjoy WebWhispers, it serves a needed purpose. It is no substitute for face to face interaction. I really enjoy going to the IAL Convention, it is one of the few things I do that has no connection with work. I do it for pure pleasure. It makes me a better speaker; it makes me a better person.
I am looking forward to seeing old friends in Boston next year, and making new
Bits, Buts, & Bytes
(1) The "Scam Scares" Are Often Over The Top.
In mid-July, I received the following Email message from an anonymous sender (he chose not to identify who he was):
QUOTE: "In the process of researching a laryngectomy (I have just had one along with a full glossectomy) I accessed your site. I have since been targeted by Email from a scam artist in Nigeria who claims he received my details from the Web Whispers site. I attended my first meeting today of a local laryngectomy club and warned them of the dangers of giving their details out with your website in particular. I don't know if this information is of any use but I thought it best to inform you." END QUOTE
I politely answered this Email as follows, resisting the urge to be more "DIRECT":
"To whom it may concern (since you did not sign the above) ...
Thanks for the heads up ... however, since you are NOT a WebWhispers member, neither your Email address nor any of your other personal data are located/listed on the WebWhispers web site. Your Nigerian scammer is BS'ing you ... which is, of course, what they LIVE FOR. What he CLAIMS is simply technically impossible. And you can QUOTE ME to your local club when you apologize for giving them false information, based on an assertion from a clever scammer. He obviously obtained your Email address from somewhere, but it was NOT from you simply accessing the WebWhispers web site. I would politely suggest that, in the future, you fully research the basis for your accusations before you unfairly make and spread them. Thanks for the consideration."
Our anonymous Emailer then replied as follows:
QUOTE: "Apologies for your interpretation of any assertion and I will make the same known to the club at the next meeting. I also never intended to cause you offence, but to make you aware of what was happening. I appreciate that these scammers are technically very clever and as I am not, the link to your site concerned me, not for myself but for others that may be taken in by the scam. Once again apologies for any offence. END QUOTE"
Pat Sanders, our VP for Web Information, on behalf of the Executive Committee, then wrote him back with information worth sharing with all of you:
"Thank you for replying to Dutch's email and for the promise to
straighten out any misconception about our site.
THE BOTTOM LINE: Many "myths" abound about scammers/spammers and what they can and will do. However, one thing is FOR SURE. Scammers and Spammers CANNOT obtain access to your Email address simply because you merely access and read pages from the WebWhispers web site. Asserting thus is simply another Urban Legend ... not based upon the FACTS about the cyberspace environment. This is, however, a good lesson for us and should encourage you ALL to perhaps invest in some computer anti-spyware software, such as "Spybot Search and Destroy" (See my review of this software in the May 2004 edition of Whispers on the Web).
(2) Officers' Semiannual Report to the Membership
For those who missed it, please note that your Officers' Semiannual Report to the Membership for the period 1 January - 30 June 2004 is available for your reading and review on our web site in the Reports Section. You may access it directly from HERE. This will give you a good idea of what your club has been busy doing in the first half of 2004. Enjoy the read!
(3) IAL 2005 Scheduled for Boston, MA
The 2005 IAL Annual Meeting and Voice Institute will be held in late-August /early September in Boston, MA. You can take a sneak peek at the IAL 2005 Home Page and at the hosting hotel facilities (The Boston Park Plaza) beginning HERE. You might "bookmark" the IAL 2005 Home Page for future reference as plans evolve over the coming months.
Our Most Unusual Stoma Cover Request
ListServ "Flame Warriors"
Xenophobe is usually a long-term discussion forum participant
who thinks of the forum as his own private compound.
Xenophobe regards Newbies to his forum as mentally
deficient and perhaps even having criminal tendencies, and
they are invariably approached with suspicion and
condescension. If a Newbie has the temerity to make critical
observations about the forum's social dynamics, or questions
prevailing opinion, Xenophobe will attempt to silence or drive
out the newcomer.
Above courtesy of Mike Reed
See more of his work at: http://www.winternet.com/~mikelr/flame1.html
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 27 new members who joined us during July 2004:
Rick Anderson - Cord Paralysis
Mary Ann Arnolde
Guy Bennett - Vendor
Todd Bohnenkamp - SLP
Terre Haute, IN
Rod Michael Chester
Kansas City, MO
Golborne, Warrington, Cheshire, UK
Charles Cobleigh - Vendor
Bill & Nancy Cornman
Bud & Mary Gene Dailey
Roberto De Mitri - Caregiver
New York, NY
Panama City, FL
Jennifer Hagenmaier - Caregiver
Cheria Hay - SLP
Nancy Johnson - Caregiver
Corrine Kole - SLP
Kansas City, MO
Las Vegas, NV
150 Mile House, BC, Canada
Las Vegas, NV
WebWhispers is an Internet-based laryngectomee support group.
It is a member of the International Association of Laryngectomees.
The current officers are:
Pat Sanders............V.P.-Web Information
Terry Duga.........V.P.-Finance and Admin.
Libby Fitzgerald.....V.P.-Member Services
WebWhispers welcomes all those diagnosed with cancer of the
larynx or who have lost their voices for other reasons, their
caregivers, friends and medical personnel. For complete information
on membership or for questions about this publication, contact
Dutch Helms at: email@example.com
? 2004 WebWhispers