|Name Of Column||Author||Title||Article Type|
|Musings From The President||Murray Allan||Pat Sanders||News & Events|
|VoicePoints||Dr. Jeff Searl||Std Vs Indwelling||Education-Med|
|Living The Lary Lifestyle||Joan G. Burnside||Chapter Five||Education-Med|
|News You Can Use||Scott Bachman||Burglaries Blossom||Education|
|Between Friends||Donna McGary||Acting Cheerful?||Experiences|
|Bits, Buts, & Bytes||Dutch||Computer Tips||Experiences|
|New Members||Listing||Welcome||News & Events|
Murray's Mumbles ... Musings from the President
Profile of a WW Executive Committee Member - Pat Wertz Sanders
I believe that all of your Executive Committee works tremendously hard to make WW the thriving laryngectomee club that it is.
We can be proud that we are proactive and can answer practically any question that you may have regarding laryngeal cancer and the care and feeding of larys. We have a superb brochure which is distributed world-wide and a members loaner closet second to none to aid those who require an artificial larynx for a maximum ninety day loan. We have over 1300 members, including professionals, around the globe who keep us up to date on new treatments or other changes in the lary world.
One EC member that helps makes the above possible I would like to highlight this month and she is Pat Sanders, Vice President - Web Site Information, who hails from Birmingham, Alabama. Pat's energy and intellect knows no bounds. Pat is a MENSA member which means that she scored in the top 2 per cent of the general population using an approved and supervised IQ test. Pat does not boast of this gift - I discovered it through a "deep throat" source.
As the Vice President - Web Site Information, Pat is responsible for web site content, style and graphics and all the research that goes with those tasks. She is also very busy with special projects such as bylaw amendments and many other time consuming jobs.
She is Editor and frequent contributor to HeadLines published by the University of Alabama Kirklin Head and Neck Cancer Group. She is much better known to us as almost a daily contributor to WebWhispers answering all those frequent questions which our members ask. Pat is active with her Birmingham club and does frequent visits to pre and post operative laryngectomees.
Pat was the second person honored, after our founder and Webmaster, Dutch Helms, with the prestigious Casey-Cooper Laryngectomee of the Year Award in 2002. I refer to her as the "Great Guru of Laryngectomees" because of her great font of knowledge on this subject.
In her spare time Pat is the official Cruise Coordinator for the annual WebWhispers and Friends cruises normally held after the IAL convention. This year the cruise will depart Boston on September 4th for a trip to New England and Canada.
She is one busy lady and a pleasure to work with. You can meet Pat in person at the IAL convention in Boston. She will be at or near the WebWhispers table.
Take care and stay well.
? 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
Standard vs. Indwelling Voice Prostheses
How do I choose?
Tracheoesophageal (TE) voice restoration is supposed to minimize complications for laryngectomees. However, as many laryngectomees know, TE voice restoration is not simply about placing a voice prosthesis. Voice prosthetic placement is just the beginning of TE voice restoration. Problems may arise with TE voice restoration that require multiple visits to the speech-language pathologist (SLP) and/or otolaryngologist (ENT). Laryngectomees are at high risk for complications due to radiation, chemotherapy, the extent of the tumor extraction and surgical reconstruction, nutritional status and age. Given this varied population, it is no wonder that many voice prostheses are on the market. One size does not fit all and there are some important decisions that need to be made about which prosthesis is best for the patient and his/her lifestyle. One decision is whether or not laryngectomees are fitted with a Standard or Indwelling voice prosthesis. A brief synopsis about Standard and Indwelling voice prostheses follows. The information is not intended to be comprehensive; the list of available products is not exhaustive, nor will this discussion be instructive in nature. Rather, an examination will be made of two essential considerations when choosing either a Standard or Indwelling voice prosthesis: Lifestyle and Cost.
Standard voice prostheses are ones that are patient maintained. From a lifestyle standpoint, the laryngectomee is in control of his/her voice prosthesis. The patient may place the voice prosthesis, remove the device and order it directly from the manufacturers. The laryngectomee is not dependent on medical professionals except when problems arise either due to incorrect placement or other causes. Some laryngectomees are very self-sufficient, active, live far distances from medical centers and/or travel frequently; they do not want to be dependent on anyone to change their voice prosthesis. In contrast, Indwelling voice prostheses are loosely defined as voice prostheses that may remain longer in the puncture tract (although some Standard voice prostheses may be used for the same duration) and are maintained by medical professionals. Indwelling voice prostheses were originally intended for patients that were elderly, who did not have good hand/eye coordination or manual dexterity, decreased eye sight, etc. However, to date, many laryngectomees who do not have these concerns wear Indwelling voice prostheses because they are either fearful of changing it themselves or have stomas (e.g., small) and/or punctures (e.g., hard to see) that make their placement of a voice prosthesis difficult. So, lifestyle demands often dictate whether a laryngectomee feels more comfortable taking care of his/her own voice prostheses or having a medical professional do it.
Some laryngectomees opt for an Indwelling voice prosthesis because of the absence of the voice prosthesis strap and tape. Whether the reason is esthetic or practical, there are those who do not like a strap and tape. Straps may make the adherence of products designed to stick around the stoma or go in the stoma with or without an automatic/hands-free speaking valve more likely to ?leak.? However, many laryngectomees use Standard voice prostheses (with the strap) in conjunction with these products without problems. Some patients have skin reactions to the adhesives used in tapes and cannot use them for that reason.
Other considerations for choosing either Standard or Indwelling voice prostheses come down to money. Standard voice prostheses are cheaper than Indwelling voice prostheses. Many medical professionals and laryngectomees have personal stories of insurance reimbursement frustrations from their selection of a voice prosthesis. Often, finance dictates choice of voice prostheses. In addition, from the standpoint of healthcare costs, fewer therapy sessions are needed for Indwelling placement * because less time is needed for instruction. Four treatment sessions are generally required for a laryngectomee to feel comfortable inserting and removing a Standard voice prosthesis. Yet, a laryngectomee?s comfort level with whichever device he/she chooses is an important factor. If additional therapy sessions help someone who has chosen an Indwelling device then it may be advisable to schedule the extra time. Until recently, all Indwelling voice prostheses in the United States were either 20 or 23 Fr in diameter. However, a new 16 Fr voice prosthesis has been introduced. . Standard voice prostheses come in either 16, 17 or 20 Fr diameters and Indwelling voice prostheses come in 16, 20 or 23 Fr diameters. Differing diameters of voice prostheses stems from research done in the mid-1980s that speculated that voice prostheses of larger diameter might make TE speech easier. In most clinics laryngectomees are not asked if they find it easier to speak with a 16 vs. 17 vs. 20 vs. 23 Fr voice prosthesis. Instead, they are placed with whatever their SLP or ENT gives them. But given an increase in diameters of voice prostheses, some professionals see a potential problem emerging ? leakage around the voice prosthesis. There is speculation that prosthesis diameter and the weight of the prosthesis may dilate the puncture and cause leakage around, though no studies have been undertaken to confirm the speculation. Other causes of leakage around voice prostheses may derive from radiation treatment, chemo/radiation failure, nutritional imbalance, uncontrolled diabetes, new cancer or recurrences, using voice prostheses that are too long, and thyroid dysfunction. Smaller diameter voice prostheses of lighter weight may be better for some laryngectomees with a very short puncture tract, or so the thinking goes. Further clinical observations will lead to the research that settles this issue.
Medical professionals are lucky to have such a wide assortment of both Standard and Indwelling voice prostheses, as well as prostheses that come in varying diameters, so that the best voice prosthesis may be chosen for the particular needs of laryngectomees. In the end, though, it is the laryngectomee who makes the choice based on his understanding of the device that?s been recommended. Keep in mind that medical professionals are service providers; laryngectomees have a self-interest in learning about the pros and cons of each device.
Tips 41 through 50
. . . speech is like an
It may sound like hell but you?ve got to go on.
William Thomas Piper
TIP # 41, ASK FOR WRITTEN INSTRUCTIONS.
When you?re first learning a lary care procedure, it is routine to the person who is teaching you, but you may find yourself floundering when you have to do it at home. Your speech language pathologist should automatically hand you a set of directions or print a customized set from her computer. If there are none available, then ask her to repeat the steps while you write them down.
JB?s note: I was very grateful for the pre-printed information provided at MD Anderson, throughout the course of my treatment. You can?t remember everything you?re told when you?re sick or recovering. My sister says that written instructions are equally important for the friend or relative who is helping you and may be very anxious about doing things incorrectly. I wish the medical supply people would print large type directions (like these) instead of the fine print you can?t read even when you?re well.
TIP # 42: DON?T JUST ?SETTLE?
No matter what your location, family situation or financial status is, get the best medical advice. You have a lot of years to live yet, and you don?t want to spend them in a muddle of regret. The people who should be helping you make decisions are the people who specialize in head and neck cancer treatment at a major university affiliated cancer center. Even years later, there may be procedures or speech pathology services that could improve your life. If you go to the best possible doctors, who have the highest level of training and see the largest number of cases like yours, then you will know you have done everything you can. That knowledge is priceless.
JB?s note: It is painful to see e-mails on WebWhispers from Larys who are not even aware that they have missed some basic information they should have received years before.
TIP # 43: EAT ALL DAY LONG
Eating, if you?re on a feeding tube, can be very discouraging. It can take over an hour to get your full ration down and leave you feeling too full. If you try to pump it in faster, you can cause digestion problems and reflux. Once you start real eating again, your stomach capacity may be limited, and just fixing the food may exhaust you. Some Larys suggest going for six meals instead of three, saying it?s less uncomfortable in short spurts.
JB?s note: Once, after getting my feeding tube replaced, a nurse insisted that three meals a day was better, because it allows you to get hungry. She showed me how to just pour it into the tube through the big formula syringe rather than using the hanging bag. Later, the dietitian didn?t like it, but that?s how I continued as long as I was on formula.
TIP # 44: TIE A KNOT IN YOUR CATHETER
Do this if you use a catheter while changing your prosthesis. The knot goes in the end that remains outside your stoma. It keeps your stomach contents from ending up on your shirt.
JB?s note: One of my SLP?s told me this. Until then I thought the knot was to keep the catheter from sliding down my throat. Then I realized that the outside end was larger and weighted, so that couldn?t happen anyway.
TIP # 45: HUMIDIFY THE PLANE
You can?t do that, but you can humidify your stoma. Lary travelers advise spraying your foam or fabric stoma cover, if you wear one, with water and drinking large amounts of water.
JB?s note: I?ve had no problem on short flights, but I do use a saline bullet shortly before boarding.
TIP # 46: TRY, TRY AGAIN
Time and the healing process can gradually change things. Something you couldn?t do a few days or weeks ago, may suddenly be possible. This is true for many stages in eating, speaking, using your right arm, general stamina, and even memory and thinking.
JB?s note: It?s always a pleasure to walk in and astound my SLPs with something new. For example, having to use a pressure band one visit, and not needing it the next time. I?ve found I can go backwards, too, but it isn?t quite so discouraging, once you take the long view.
TIP # 47, SWALLOWING, USE IT OR LOSE IT
While undergoing radiation and using a feeding tube, do exercises to preserve your swallowing ability. If you haven?t received a set of exercises, ask for them from your speech-language pathologist.
JB?s note: I found this tip on the internet. It was written in longer form, by one of my SLP?s. I had received the demonstration and printed instructions much earlier, when we all thought I was not going to need surgery. Later, after a combination laryngectomy/pharyngectomy I had to wait five weeks to swallow. Watching the liquid slide down my pharynx on the monitor was a memorable moment.
TIP # 48: CALL 911
But before you have an emergency, let the 911 dispatcher know about your condition and that you may not be able to talk after dialing 911. You can do this via a letter or a visit. They will put your information in their computer. The basic point you want to get across is that you breathe through the opening in your neck, and that is where the oxygen needs to go. You can use your orange card to explain. A visit to the EMS people will also be helpful and educational for them, as well.
TIP # 49: FIND A LARY CLUB
If you are fortunate, your club found you before you left the hospital or you were put in touch with one before your surgery. Many Larys say that their Nu-Voice or Lost Chord club is the best thing that happened to them. You?ll have opportunities for socializing, talking, learning and community education.
JB?s note: Clubs are not available everywhere, but if you want to start one, you can contact the American Cancer Society.
TIP # 50: GO FOR DILATION
If your doctor recommends it, consider esophagus dilation. Many who have had it say it is a simple procedure and improves their swallowing greatly. It may need to be repeated every few months.
A new Lary learns something every day, whether he wants to or not. A notebook is a good spot to note your new knowledge. You want to do this so you can remind yourself later of how far you?ve come. How is eating going? Is your weight holding? Has anything happened spontaneously that you hadn?t expected? Are you planning a visit to your neighborhood
REPORTS FROM ROBOCOP?S REPOSITORY
News You Can Use ... by Officer Scott Bachman
Deception Burglaries Blossom in Nice Weather
Spring/Summer is here and unfortunately this is the time of year when these types of crimes are known to occur.
Suspects posing as legitimate workers approach elderly homeowners at their residence with the intent of gaining entry using a seemingly legitimate role, i.e. local gas company, water department, cable company, tree trimmers, pavers, inspectors or government officials. One suspect will distract the homeowner while a second suspect will enter the home and search inside for valuables and cash.
Another type of ruse used to gain entry into the home is for a suspect to knock on the door and ask for a pen and piece of paper to leave the victim's neighbor a note. The suspect may appear to have difficulty writing the note and will ask to come inside the house. Once inside the victim's house the suspect will ask the victim to help write the note. As the suspect keeps the victim occupied others enter the residence to remove money and valuables.
A variety of vehicles can be associated with these subjects including pickup trucks, vans and sport utility vehicles. Whenever possible write down vehicle tag numbers for future reference.
Be particularly alert to anyone in your neighborhood looking to perform home repair or asking to gain entry into your home. Be sure to ask to see identification and let them know you are going to call and get authorization from their company before allowing them access. If they are legitimate they won't mind the wait.
Remember, do not intervene but call 911 immediately about suspicious activity.
Protect Yourself from Home Improvement Scams
Safeguard your homes and property against unwelcome visitors who intend to defraud and steal from you.
To prevent the chances of being victimized residents are urged to observe the following precautions:
Be aware of various ruses that are used to gain entry
including posing as utility representatives, asking for a drink of water,
looking for property that is for sale or selling home improvement services.
Victims working in their yard can also be targeted as suspects enter through
Bits, Buts, & Bytes
(1) Question: My friend just said he uploaded a new picture to his web page but when I go to his web page the picture is not where he says it is. He swears it is there ... but if so, why can I not see or display it?
Answer: Most PC's "store" the web pages you have looked at in the past ... so they will load faster to your screen. These "old pages" are stored in your PC's cache. When you then re-access that page, your PC can often display the "old version" of that page that is stored in your cache rather than the new, up-to-date version that is now resident on the web site. This is a common problem with the AOL browser, although it can and does occur on all PC browsers. The "fix", however, is simple ... if you think you are viewing an old page, simply hit your F5 Key ... this will "refresh" your screen, disregarding the "cached page" and displaying the actual "current" page. So, when in doubt, strike the F5 Key.
(2) New - Windows XP Professional x64 Edition
Over the next few weeks your favorite media outlets are going to tell you about a new version of Windows XP--"Windows XP Professional x64 Edition"--that is faster and more efficient, supports up to 128 *gigabytes* of RAM ( 250 to 500 times more RAM than most XP users currently have ), and even lets you run two single or multicore processors at the same time. This new version of Windows is a godsend for anyone who does processor-intensive academic research or corporate database manipulation. Best of all, if you already have Windows XP Professional running on your computer, you can upgrade to Windows XP Professional x64 Edition at no charge.
So, you should rush out and upgrade to this new version of Windows immediately, right? WRONG! What the media ISN'T going to tell you is that unless you routinely use your computer to do complex arithmetic functions with integers between 0 and 18,446,744,073,709,551,615 (the amount of pennies under Bill Gates' couch cushion), Windows XP Professional x64 Edition simply isn't meant for you. Worse still, you have to have a special type of computer-- one with a brand new Intel Xeon, Intel Itanium, or AMD Athlon 64 processor running inside of it -- to be able to run this new version of Windows.
How can you tell what type of processor is inside of your computer? Simple!
1. Go to Start > Run
2. In the box that appears, type sysdm.cpl
3. Press the Enter key on your keyboard
This opens your computer's System Properties control panel. You can also get to the System Properties control panel by pressing both the Windows (flag) key and the Pause/Break key at the same time or by right-clicking on your My Computer icon and choosing Properties. But where's the fun in that?
In the System Properties control panel, the first thing that appears is the General tab. In the top right quadrant of the general tab, find out what operating system you are running. To be able to upgrade to the new version of XP you MUST be running Windows XP Professional. If you see the words "Home Edition," "Windows ME," "Windows 98," "Windows 95," or "Greetings Professor Falken, shall we play a game," anywhere on the general tab, you're out of luck. Windows XP Professional x64 Edition will not run on your computer (although you can still play a nice game of global thermonuclear war on that last example.)
Once you have verified you're running Windows XP Professional, glance at the bottom right quadrant of the General tab and look for the words "Xeon," "Itanium," or "Athlon 64." If you *DON'T* see any of these words--if, instead, you see the words "Pentium," "Celeron," Centrino, "Duron," "Athlon," "Boron," "Cesium," "Gluttony," "Sloth," "Avarice," or anything else (including no words at all) -- walk away. There's nothing to see here. Windows XP Professional x64 Edition will *NOT* run on your computer.
If, however, you do have a Xeon, Itanium, or Athlon 64 processor, you're good to go. Your computer is (probably) powerful enough to run Windows XP Professional x64 Edition. Hop on over to this website to exchange your old, 32-bit version of Windows XP Pro for a new copy of Windows XP Professional x64 Edition.
BUT be aware that 64-bit device drivers are as rare as elephants in Antarctica. Many of your computer's peripherals including your DVD burner, sound card, and home-built PVR interface will probably not work once you upgrade to Windows XP Professional x64 Edition.
So, to sum up, there is a new version of Windows XP specifically designed for processor-intensive academic research and corporate database manipulation. You can upgrade to this new version at no charge, but:
1. You have to be currently running Windows XP Professional.
2. You have to have a 64-bit processor like a Xeon, Itanium, or Athlon 64.
3. Once you upgrade, your computer's peripherals may no longer work (at least until
manufacturers start making 64-bit device drivers.)
My suggestion: Even if you CAN upgrade to XP Professional x64, DON'T. Instead, wait until the next version of Windows (codename Vista) is released later this year. Not only will you get the latest operating system, my guess is that a LOT more peripherals will work with Vista than will work with XP Professional X64 (other things held equal.) I hope this helps!
(3) Dude, Where's My Plane?
ListServ "Flame Warriors"
Forums often contain one or more unacknowledged
sub-societies, but everyone except
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 25 new members who joined us during June 2005:
Crown Point, IN
Kristin Conzo - SLP
G?bor Csekey - Caregiver
Thousand Oaks, CA
Dianna Davis - Caregiver
Glen Burnie, MD
Clear Lake Shores, TX
Joseph & Patricia Greene
Banora Point, NSW, Australia
Corpus Christi, TX
W. Palm Beach, FL
Kimberly Peebles - Caregiver
Apple Valley, CA
Janel Sullivan - SLP
Heather Sweet - Caregiver
Jeffery Vanden Hogen
Claude J. Whalen
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: firstname.lastname@example.org
? 2005 WebWhispers