|Name Of Column
||Using OTC Medications
||News & Events
||J Bishop-Leone, M Benjamin
||Provox Protheses: How Do I Choose
||Finding My Voice
||Your Medical Coverage
|This Lary Life
||Pat in Brisbane, Australia
||Early Days of WebWhispers - the list
|The Speechless Poet
||Len A Hynds
||A Thought for the Day
||Prose & Poetry
|Bits, Bytes & No Butts!
||Browsers & Search Engines
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
Using OTC Medications
(for seasonal changes and ordinary allergies or irritations)
There are a few of the "Over The Counter" meds that can save trips to the doctor. My doctor and I discussed this and I would suggest you talk with your doc about managing your own mild problems to keep from getting infected or feverish. If you have seasonal coughing, sneezing or stuffiness. Sometimes having simple OTC meds can save a doctor visit.
Let us take the most simple problem... moisture. You may get enough moisture to get by on but most likely you do not, especially during very dry spells or when heat (and sometimes a/c) is on. ANY solidifying of the mucus in your stoma means you need more moisture.
I list the OTC meds on my list of medications (marked take "as needed") so my doctor has a full view of what I do.
Guaifenesin (thinning mucus) - What is it?
Guaifenesin is an expectorant. It helps loosen congestion in your chest and throat caused by the common cold, infections, or allergies, making it easier to cough out. Guaifenesin requires plenty of fluids to be effective, so drink extra fluids to help loosen the congestion and lubricate your throat.
Usual Adult Dose for Cough
Immediate release formulation: 200 to 400 mg orally every 4 hours as needed, not to exceed 2.4 g/day
Sustained release formulation: 600 to 1200 mg orally every 12 hours, not to exceed 2.4 g/day
Personally, I find it more effective to take it in liquid form (such as the tussin syrup) and follow with at least a half glass of water. Get the PLAIN kind.. not the ones with other drugs mixed in.
There are so many on the market and there are differences in how sleepy they make you or how effective they are for your particular allergies. Many people have mentioned the following choices:
Because I have had occasional vertigo, my doctor has told me to take a different med, if I feel dizzy or woozy: It is an antihistamine that is used to treat or prevent nausea and dizziness caused by motion sickness, symptoms of vertigo caused by your inner ear.
Meclizine: (Brand Name: Antivert, Bonine)
Usual Adult Dose for Vertigo: 25 mg orally 1 to 4 times a day
My experience with this chewable tablet is it knocks me out. But in cutting it to much smaller sizes, it seems to work well to stop sneezing and reduce extra mucus. I still get sleepy but not knocked out by 1/4 of a tablet.
Sudafed (pseudoephedrine) is a decongestant that shrinks blood vessels in the nasal passages which can cause stuffy nose. We feel this, even though we don't breathe through our nasal passages. So a decongestant may help
congestion of the tubes that drain fluid from your inner ears, called the eustachian (yoo-STAY-shun) tubes.
Take Sudafed with a full glass of water. My preference is to take the little 30mg tablet instead of the long acting and I don't like to take more than that at a time. My doc says, if sinus feel stuffy, take the sudafed.
Read the labels.
Here is where you get in trouble. All of these type products come in different forms with 2 or 3 put together to take care of "night time" or "coughs".... so if you take a pill for one thing and a syrup for another and they have additonal drugs added, you could be getting double doses of something else . I like to know what I am taking so I read the labels and take mine separately. You may not need but one, especially if you start with adding moisture!
Provox® Voice Prostheses: How Do I Choose?
By Julie Bishop-Leone & Meaghan Kane Benjamin
As a result of the many hours of research and development, one has a plethora of choices when it comes to Provox ® voice prostheses. Careful design and intense study has been done on each of the voice prostheses (VP) in the Provox® line to better tailor to the demands and needs of patients and clinicians with various clinical problems. Below are list of the various Provox® voice prostheses available, descriptions and some clinical indicators for use.
There are two categories used when describing voice prostheses (VP). One category is defined as a non-indwelling style and/or patient changeable voice prostheses. These non-indwelling style voice prostheses are designed for patients and their caregivers to independently manage and replace their voice prosthesis when needed. The other category is called an indwelling style voice prosthesis. This is a voice prosthesis that is only approved to be changed by a healthcare practitioner such as a speech pathologist, physician, physician’s assistant and/or nurse.
Provox® NON-INDWELLING VOICE PROSTHESIS
• Provox® NiD™ Voice Prosthesis: this is a non-sterile 17 or 20Fr VP that may be managed independently by the patient or one’s healthcare practitioner. The shaft of the NiD is blue to allow for easier visualization of the VP during cleaning and inspection. The retention flanges are smaller and thinner in comparison to the indwelling style VP making it easier for placement and removal. There is a safety medallion attached to the strap of the NiD™ to provide easy removal of the VP in case of accidental dislodgement into the airway. The strap is tapered allowing for less interference with adherence of baseplates and/or housings.
o Clinical Indicators:
• Poor VP device life;
• Independent patient management of VP;
• Patients with early device leakage due to an increase in pressure in the pharynx/esophagus during the swallow (i.e. stricture); and
• Good alternative for a lower cost device when the patient is unable to afford the upfront cost of the indwelling style voice prostheses
Provox® INDWELLING VOICE PROSTHESES
• Provox® Voice Prosthesis: this is a first generation, sterile 22.5Fr VP that is only placed and removed in a retrograde fashion using a Provox® Guidewire. This prosthesis is typically placed in the operating room at the time the tracheoesophageal puncture (TEP) is created.
o Clinical Indicators:
• Placement at the time of TEP surgery;
• When the patient’s TEP is poorly positioned and/or has an angulated tract; and
• When a separated party wall is suspected;
• Provox®2 Voice Prosthesis: this is the second generation 22.5Fr indwelling VP that can be placed and removed in both a retrograde and/or anterograde fashion. It has a lower resistant, hinged pre-tensioned valve with a fluoroplastic blue ring that is candida resistant and radiopaque. Anterograde placement is performed using a loading tube and insertion stick.
o Clinical Indicators:
• Poor VP device life;
• Placement at the time of TEP surgery;
• When the patient’s TE tract collapses upon removal of dilator and/or red rubber catheter;
• When the patient’s TEP is positioned deep within the trachea; and
• Presence of circumferential granulation tissue around TEP.
• Provox® Activalve™ Voice Prosthesis: this is a 22.5Fr indwelling VP that can be placed and removed in both a retrograde and/or anterograde fashion like the Provox®2 VP. It was designed as a problem solver for patients with consistent device life that is less than eight week due to biofilm and/or increased intraesophageal pressure when swallowing. The valve and the valve seat are made of a candida resistant fluoroplastic material. The valve also contains a magnet that is available in three strengths, light, strong and extra strong to counteract the increased intraesophageal pressure and support valve closure. Studies have shown that patients had a mean 16-fold increase in device life with this particular prosthesis in comparison to the Provox2.1
o Clinical Indicators:
• Patients with poor device life as defined by five consecutive incidents of device life less than eight weeks due to biofilm and/or increased intraesophageal pressure when swallowing;
• Uncontrollable gastric filling of air;
• If patient suffers from poor device life due to biofilm, then Activalve™ Light; and
• If patient suffers from poor device life due to increased intraesophageal pressure, then Activalve™ Strong.
• Provox® Vega™ Voice Prosthesis: this is the third generation indwelling VP with improved airflow characteristics to minimize vocal effort. It is the available in three diameters, 17, 20 and 22.5Fr. It has a valve seated that is angled and lowered into the shaft of the prosthesis. It has 360° hood to avoid the function of the VP from being affected by the esophageal environment. It can be placed and removed in both a retrograde using the Provox® Guidewire or an anterograde fashion using the preloaded SmartInserter™ provided with the VP. The Provox® Vega™ is sterile and comes preloaded in the SmartInserter™ to provide easier and more hygienic handling of the VP. The SmartInserter™ automatically folds the VP and prevents unintentional overshooting of the VP into the esophagus. Placement of the Provox® Vega™ with the SmartInserter™ is not intended for a non-healed, freshly created puncture and in that case will need to be removed from the SmartInserter™ and inserted retrograde with use of a Provox® Guidewire.
o Clinical Indicators:
• Poor prosthetic device life;
• When patient requires increased airflow through the prosthesis due to a tight, but fluent voice and you want to avoid increasing the diameter of the TEP;
• When you want to reduce the intratracheal back pressure to maintain a better seal with baseplates and/or housings; and
• When you need an increase in airflow when using a FreeHands HME.
PROVOX® Voice Prosthesis Accessories
It is very important to thoroughly clean the voice prosthesis at least twice a day and after meals to try and prevent biofilms from invading the voice prosthesis and thus causing it to fail. As such, Atos Medical has developed several cleaning devices to help maintain and extend the life of the voice prosthesis. The recommended regimen is to brush and then flush the voice prosthesis twice a day and after meals to wash away any potential food and/or biofilms.
• Provox® Brush: the brush is available in two different sizes based on the length of the VP. For lengths 4mm-10mm, one would use the standard Provox® brush and for those lengths > 12mm, then one would use the Provox® XL brush. The brush should be replaced every 30 days to prevent biofilm colonization on the brush.
• Provox® Flush: the flush is designed to be used with all of the voice prostheses to remove debris and any food particles that the Provox® brush has loosened. It has four nozzles for high tech turbulence for maximal cleaning of the inner lumen of the VP with either water or air.
• Provox® XtraFlange™: this is a silicone sealing ring (washer) designed to reduce periprosthetic leakage with the Provox® indwelling style voice prostheses while reducing the need to replace the VP. The thin material adheres to the tracheal mucosa and prevents leakage by means of surface tension. It is available in 17, 20 and 22.5Fr and is placed circumferentially on the tracheal side of the VP while the VP is in situ.
As we are always concerned with cost-effective healthcare, trying to extend the life of the voice prosthesis as much as possible is an important issue. Keep in mind that just because a voice prosthesis might have a cheaper upfront cost, doesn’t necessarily mean that it is cost-effective. You need to consider both the upfront cost of the prosthesis as well as how long it lasts to determine cost-effectiveness. Each person has various types and amounts of biofilms in their body. As such, VP device life varies and may be dependent on oral hygiene, how one cleans their VP, presence of gastroesophageal reflux, diet, and/or intraesophageal pressures to name a few. When choosing the right prosthesis for your patient, it is important to consider many factors: mean voice prosthetic life, quality of voicing, ease of use and cleaning, clinical indicators, prosthetic design to accommodate the patient’s anatomic configurations, and lastly cost-effectiveness.
Several independent studies2-13 assessing the mean device life of various voice prostheses and feel it is critical to examine these when choosing the most cost-effective prosthesis for your patients. Atos Medical has compiled a document entitled, Provox® Prostheses Literature Review that includes a comprehensive list and summary of all of the research conducted on voice prosthetic life. Contact ATOS Medical if you would like to obtain a copy of it.
Furnished upon request
Finding My Voice
Writers always talk about their “voice”. It is what makes them unique. The good ones are identifiable in the first paragraph. No one mistakes Hemingway for Dickens or Nora Roberts for Anita Shreve. The rest of us wannabees muddle along, pouring out heart and soul in blogs, essays and long letters to loved ones. We are pretty much unsuccessful and unrecognized except by our families and a few loyal friends, who all say the same thing. You really should do something with this: by which they mean, write a book. Their naiveté is charming and their confidence, heart-warming, but, it’s just not that simple to get published.
However, it is my experience that finding your voice as a writer may be even more difficult. I know first-hand, because I had to lose my voice, in order to find it. I was diagnosed with a rare head and neck cancer, Adenoid Cystic Carcinoma, in March of 2000, two days after my 47th birthday. I had just started a graduate program of gerontology at UMASS Boston. It was a complete and much desired change from the work I had done for nearly 30 years to support my family: everything from waitressing to newspaper advertising sales. When my beloved but difficult son managed to graduate from high school a few years earlier, I had told him, one of us is leaving home and going to college and if it’s not going to be you, it will be me. He chose work and I got to go to college. After years of part-time classes and haphazard courses, I felt like I had finally figured out what I wanted to be when I grew up. Then I got sick.
Cancer is a vicious enemy and I have no intention of chronicling my battles with it here. That, unfortunately, is a story told way too often. Suffice it to say, I have won so far, but not without considerable cost. My trachea and vocal cords are permanently scarred by radiation damage and useless. I breathe through a hole in my neck and I can’t talk normally. There were nearly three years of procedures, treatments, drugs and trials before I got my first electrolarynx. An electrolarynx is a battery powered device you hold to your neck that allows you to speak. Normally your vocal cords vibrate the air that you breathe out and you use your throat, mouth and tongue to manipulate that vibrating air into word and song. An EL also vibrates the air coming into your mouth, but it must go through the skin, muscle and tissue of the neck. It produces a buzzing noise to do this and is really quite remarkable in its ingenuity. However, it simply cannot recreate the subtlety and sensitivity of delicate and powerful vocal cords that produce the extraordinary range of our human voice. I think it is fair to say that the electrolarynx or EL is the voice of last resort for folks who have lost the use of their vocal cords. Unfortunately, the alternatives are not options for me. But after three years of mostly being either without a voice completely or having a raspy and unpredictable one, an electronic voice that I could command at the touch of a button was an awakening. My first words to my ENT doctor were “We are Borg. Resistance is futile.” He is a wonderful surgeon, but not a Trekkie, so he didn’t get my humor. The speech pathologist cracked up.
I became proficient with my “new voice” easily. There are some who would say, too easily. Apparently three years of not talking had stored up a lot of words and my son was not the only one to threaten to take away my batteries if I didn’t stop talking! But between the time that my vocal cords got fried and I learned to love my EL, I navigated a silent and uncertain world. I lived alone, couldn’t use the phone and the computer became my lifeline. Eventually, my parents finally figured out how to e-mail and even my brother went online. I started instant messaging with my son and I found on-line support groups. But I could not talk.
Animals communicate. Human beings talk. We tell stories about our past, both invented and true and we imagine our future. Creative language is central to our humanity. If I couldn’t talk to my friends and family the old way, and I was a talker, I needed to find a new way.
Before cancer I took my voice for granted. I acted in plays and sang in choruses. I was a clever mimic with an expansive repertoire of humorous Down East tales. I read aloud to the young and old alike and took considerable pride in my ability to bring any book to life. I actually enjoyed public speaking! All that was lost.
The written word became my ally, my guardian, my avatar and my lifeline. It became my voice. I hear myself now in this voice and after ten years it is, to me, my only real voice. That is not to say I don’t miss my old voice. I do, sometimes desperately. I have a two and a half year old grand-daughter who is the love and the light of my life. From the time my daughter-in-law went back to work, I have been the nanny/granny. Kayleigh knows me only with my EL voice; to her that is what Nana sounds like. She has been playing with it, fiddling with the buttons and using it to “talk” since she was old enough to grab onto it. My greatest disappointment is that I cannot sing to her or read those treasured old favorites with all the voices, like I did with her father, but she seems not to notice.
One of the major drawbacks to the EL, in addition to the robotic sound (more about that later) is that it requires the use of one of your hands to hold it to your neck when you want to talk. That can be tiring and result in EL elbow, especially if you talk a lot! Trying to manipulate an EL, a storybook and a squirmy child can be frustrating. Then, of course there are batteries which run out mid-conversation.
On the plus side, I will say an EL is a toddler magnet. One little boy at the library was so enthusiastic when he heard me say something to Kay, he came running over shouting, “How did you do that? Do that again! I want to try that.” His mother was mortified. Kay just rolled her eyes and went back to the train table. I explained that I had a boo-boo in my throat and my voice didn’t work anymore so I had this “microphone” which helped me talk. That is my standard approach and it seems to work well. Depending on the mood she’s in, sometimes Kay even takes the EL and patiently shows the other kids how it works. Other times, she really can’t be bothered. It’s just Nana’s voice. She has become quite adept at reading my lips, for those times when I just don’t have a free hand. But she has her limits and sometimes when I am trying to get something done and I just mouth the words, she gets annoyed and tells me, “Nana, use your loud voice.”
Not too long ago I went out to lunch with a friend and our young waitress commented, “My grandmother used one of those. Unfortunately she died when I was just five, but I still have it.” When I told her that I took care of my grand-daughter and often wondered how my “voice” might affect her, she replied that it was the only way she knew her grandmother and she never thought twice about it growing up. “Sometimes,” she said wistfully, “I just get it out and listen to it. I like hearing you talk. It reminds me of her.” Now that was a revelation.
I write all the time these days, even though now I can talk quite well with my EL. I wrote this essay a few years ago for some of my fellow survivors and I still think it resonates and it is a good example of my new voice. I have since learned that even RoboNanas can pass on stories and tell the old truths in new ways.
Feeding the Wolf
During the recent celebrations surrounding the inauguration of Barak Obama, one speaker referenced this legend and I have been haunted ever since by its powerful message. An old Cherokee is teaching his grandson about life. "A fight is going on inside me," he said to the boy. "It is a terrible fight and it is between two wolves. One is evil - he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego." He continued, "The other is good - he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith. The same fight is going on inside you - and inside every other person, too." The grandson thought about it for a minute and then asked his grandfather, "Which wolf will win?"
The old Cherokee simply replied, "The one you feed." Whether we labor on the international stage where old grievances and new realities clash like Titans threatening the lives of hundreds of thousands of lesser mortals or simply muddle around our daily lives trying to play the hand we have been dealt, this is food for thought. Who will we feed?
It has been my experience that the evil wolf is very seductive - even charming sometimes, and quick to share the spoils of his feast with you … at first. It feels good sometimes to lash out at the weak, blame someone else for your failures, gloat in your successes, delight in someone else’s misfortune. It is one of the oldest (and cheapest) tricks in the book; making you look better by making someone else look bad. I loathe admitting it, but I am guilty and I suspect, unfortunately, that just about everybody I have ever met has fed THAT wolf more than once. That does not make it right and, unfortunately, as most of us learn, it begets a very hungry and unruly wolf. It would have been so much better had we never fed the thing, because it keeps coming back and it is a bully. It will haunt us, whispering “Remember how good it felt to rip and tear and destroy.”
The good wolf, on the other hand, is just not as compelling and glamorous. By the way, the word glamour originally referred to the aura cast by a magic spell. The good wolf sounds like a very earnest Boy Scout and, frankly, I don’t think he is a very persuasive salesman. It is just not all that much fun to be good, sometimes. There is a much more immediate reward in gossip than there is in forbearance. Even the words are more exciting. Poor good wolf. He doesn’t stand a chance. It is surprising he ever prevails, but he does, time and time again. And every time we feed him with kindness, courage and dignity his nasty twin slinks just a little bit further away from our door.
Recently a friend commented on the difference between my writings early on in this journey and now. He is so right. In the beginning, I was angry and fearful…defensive and wary. I didn’t realize it, but I was just trying to survive. Cancer is a pack of evil wolves at your door. I fought fire with fire sometimes, in those days. I had many good wolves too, vying for my attention and when I couldn’t feed them properly, others did that for me, to ensure they would keep coming back. They did, thankfully…the bad wolves are still out there and occasionally try to slink back for a handout of sloth or bitter self-pity but it’s slim pickings most days.
The good wolf is a hard taskmaster, despite its humble demeanor - reproachful wolf eyes will keep you awake nights. But there is no better companion than a happy well fed good wolf. It seems a simple thing to feed the good wolf rather than the bad. I think we all know it is the right thing to do, but it is so hard sometimes to choose hope over despair, compassion over scorn, joy over bitterness, and love over hate. It really is that simple. We are the fortunate ones in this battle. We chose life over death and we prevailed.
Here’s to keeping the evil wolf at bay. And, here’s to remembering that in the grand scheme of things it is not what we lose, but what we are able to hang onto that counts.
Your Medical Coverage
What's good/bad about about your health coverage? What would you change to meet your needs?
Steve Staton, Sun City CA - 2007
I'm on Medicare, and have Healthnet. They pay all but 10% of all my supplies. No Hassle.
Dave Ross, FL - 2005
I had laryngectomee surgery 4/7/05 preceded by radiation for laryngeal cancer in 2001, which was after lung cancer/lobectomy in 1997. I voice with TEP, both manual and hands free.
I have had the same basic HMO policy through Florida Health Care (FHC) since about 1990. FHC is now a subsidiary of BC/BS and when I went on Medicare in 2002 the policy was converted to a “Medicare Advantage Plan”.
ALL of my primary care and specialist visits, lab work, tests, hospital expense, surgeries, supplies and equipment have been/are covered with a reasonable monthly premium and very nominal co-pays. The only problem I have ever experienced was when the insurance company and their DME provider did not have the correct Medicare code number for foam stoma protectors which was quickly corrected.
I have had the same Primary Care Provider ever since she finished her Residency at the local hospital and went into private practice -- I have taught her a lot!!
Jack Henslee, CA - Class of 79, 88, and 95
I retired with Federal Employees Blue Cross/Blue Shield (BCBS). When I went on Social Security I only took Medicare Part A because I preferred the flexibility of the services my private insurance provided, and there was simply no advantage to paying the extra $100+ a month for Medicare Part B except for a possible bad year with many health issues. This year the Part B would have been worth the cost since I've paid more out of pocket that the coverage would have cost, but most years I'm well ahead financially without the Part B.
For the most part I'm satisfied with BCBS with 2 exceptions. Originally BCBS paid 80% of my prosthesis costs and other supplies I bought from InHealth and Atos. Then for some reason both InHealth and Atos were dropped as "Preferred Providers" and I now "pay" about 80% vs their 20%. This of course makes no sense (lots of insurance issues do not make sense) because none of the 3rd party providers can sell these supplies for less than the manufacturers listed above can sell them. The manufacturer should always be "The Preferred Provider." So in order to get reimbursed more than 20% I would have to go to a 3rd party "preferred provider" and pay their incredible marked up price which the insurance would gladly reimburse me 80%. Of course my co-pay would be a lot higher, the insurance would pay more to the 3rd party, the manufacturers probably would make about the same amount of money, and 3rd party suppliers would make a huge profit. Everyone is happy except the patient!
The second issue is for outpatient treatments. If I were to have a minor surgery with a 1-2 night stay my cost would be practically zero because of BCBS and Part A Medicare. However, a recent outpatient procedure just cost me about $1,200 because I had to pay a 15% co-pay. But if I had spent the night it would have cost me nothing if I was allowed to stay or had a complication. It's enough to make you scream!
On a closing note I was accepted for "some" VA benefits last year and I now get my prosthesis through them as well as several high cost prescriptions. It's a little more hassle but the savings add up!
Travis Benton, Malone, FL - 2002
I have Medicare, but I'm also a Veteran and rely on the VA Medical System solely for all my medical needs. I do have a copay for my meds and have to travel 250 miles one way to visit my SLP,,,but it's all worth it. The VA has outstanding ENT clinics and I have never been treated better.
Dennis Rutter, IL - June 2012
My Medical coverage. I have United Healthcare Medicare complete. I also have an IL Medicaid state program, which only pays my copay for doctor visits due to the fact I make too much money on disability for any other benefits. I have to struggle to get anything approved through Medicare. They do not cover my prostheses. They use to not cover my baseplates, but now I only pay a percentage for them. My HME's are also on a percentage base. I am a newbie, and still experiencing the fear, anxiety and depression. Many times Webwhispers has been my saving grace! I have tried to meet other larys in my area, and did so at Christmas, but the group evidently has not had a meeting since Christmas. So not much in moral support around here. I live in Granite City, IL , major metro area is St.Louis ,Mo. I am right across the river, about 15 minutes away. I was just in a training and education seminar put on by ATOS where I was given a free prosthesis for participating, and also given a hands free system. So, I got lucky and did not have to pay for the replacement prosthesis.
Ernest Anderson, Nicholson, GA - 2011
Hello all you wonderful people. I'm 70 yrs young, a retired heavy construction carpenter from NY. I'm retired from local Union 1456 Dockbuilders and Pile Drivers. We have always had wonderful medical coverage. I had my lary done at Emory University Hospital. Since my surgery, Medicare has picked up eighty percent of all my medical bills and my secondary Ins from the union has picked up the balance. I have never been turned down for any kind of service, I thank this lovely country we live in and my God. I love WW for all the wonderful people who were there for me in my time of need, God bless you all. PS... I now get out to golf three to four times a week.
Mike Smith, North Augusta, SC - 9-11-2008
I retired at 51 from the Justice Department in 2005, and took Federal Blue Cross Blue Shield into retirement. Four months after retirement, I went to work at the Augusta National Golf Club. I didn't take any of their insurance due to having BCBS. In January 2008, I was diagnosed with throat cancer, and after failed radiation treatments, had the laryngectomy surgery on 9-11-2008. I never went back to work at Augusta National.
Not being Medicare age and paying $500.00 a month for a health insurance plan has had its challenges, especially since my plan did not consider InHealth or Atos Medical as preferred providers, and to make matters more challenging were what Congress did relating to changes in Medicare. While I wasn't on Medicare, it directly affected me, because the one third party medical supplier that BCBS listed as a preferred provider, immediately stopped offering any type of indwelling prosthesis because of the Medicare changes, and the only prosthesis I could and still can purchase is the Provox NID patient changeable prosthesis. I get a large amount of air into the stomach from wearing the NID, but it has literally been reduced to the only prosthesis I can purchase where there is coverage from my medical plan. Don't get me started on what Congress did to laryngectomees when they made the latest changes, even to ones who are not on Medicare.
When times do get bad and I need to see my SLP at the local teaching hospital, I sit in the large waiting room and small talk with others who are waiting to be seen, and I listen to the interactions between the various patients and the staff, and it has become clear to me that over 80% of the people sitting in that waiting room are paying nothing for the treatment they about to receive. Periodically, I will get granulation buildup around my puncture site which requires me to see the doctor just next to my SLP....I see him and two weeks later I get three bills, one from the SLP, one from the doctor, and one from the hospital. That makes me all warm and fuzzy inside, especially after my interactions in the waiting room before.
I applaud the IAL for the articles they ran and the pressure they attempted to put on Congress about the changes they made concerning Medicare. But, the reality of it is we continue to be a small group with a small voice, as evidenced by the fact there has been no movement from Congress since those ill-advised rule changes.
Unfortunately, I just happened to get this cancer earlier in life, and there was no way of knowing that Federal BCBS would be such a poor plan for a laryngectomee who is not yet Medicare eligible, but because I took the plan into retirement, I have to keep it.
Andy Wade - 2009
Medicare will not let you have home health care if you have a SLP. I guess they think that home health care should have a “speech therapist “ like for people that have had strokes. They don’t know the difference.
Carol McCaskill, OR - 2000
The Most Important additional coverage is Dental. Period.
Joseph Evans, Philadelphia, PA - 2011
I have Medicare parts A and B as a retiree. Along with that I signed up for a supplement offered by Bravo. They offer three levels, one (most basic) is free, the other two of ascending quality(?) are fee based. I chose the second one. That costs me $30.70 per month. As far as I know, the major difference between what I chose and the next level up is that I need to get referrals. This in and of itself isn't a problem for me. Unfortunately, I was basically lied to by the Bravo representatives. I specifically asked about HME supplies from Atos before signing up and was assured that they were covered. Sadly this has turned out not to be true. They don't want to pay for any of my Lary supplies or most of my prescriptions.
I will be switching to another provider this fall. I'm looking forward to other responses to this thread. I'll use the information to help me choose a new provider.
Ed. note: Joseph has since found that Edgepark served him as a distributor.
Deb Wilson, Caregiver, Atlanta, GA - 2006
I am 61 and still working and am the caregiver to my husband Hugh,who is 74.
My insurance thru my work has allowed me to have him on my policy, which has always worked out well... .literally everything has been covered until last week when the Dr ordered a PET scan and suddenly CIGNA has outsourced to a company called Med Solutions all of their pre-approvals. A mess ensued and I had to get our Director of Benefits involved to get it approved.
My question is this: if we put him on Medicare A and B, would he be able to get a supplement even tho' he has a history with this cancer? There have been 2 reoccurences. The diagnosis was 6 years ago. I don't know if we could get a supplement and secondly, it might be cost prohibitive given his health issues.
Any feedback would be so greatefully appreciated.
Frank Klett, NJ - June 2008
I am on a Medicare Advantage plan through AARP. The plan is with United Healthcare and is very close to what I had when I was employed. It provides all the usual including drugs and my out of pocket is minimal, all things considered.
I do not have any lary type equipment requirements, except for an Electro-Larynx. It includes a Silver Sneakers membership to the local YMCA (2 blocks away).
My monthly premium is $105 for 2013, which is a higher amount that will help fund the initial setup of the ACA.
Pat Sanders, Birmingham, AL - Mar 1995
My monthly premium for Medicare B is $105, taken out of my SS Check. I have the Original Medicare Plan through AARP as my Medigap, run by United Health Care. I pay an additional amount of about $190 per month for plan F, but mine includes my choice of doctors, no co-pay, deductible covered for doctors and hospital... drugs covered in hospital but not out. I carry an extra policy called Medicare D which runs about $41, and still have a copay for drugs, low if generic.
The plan has been costly but I am well covered with the insurance when something does happen. At this point in my life, I am afraid to not have all of this coverage. When I finally got Medicare, I felt for the first time in my life safe for medical coverage and care, so I chose as comprehensive a plan as I could. However, I am concerned with the possible changes that are coming. I see cuts in services and non-medical panels making decisions as to whether I am too old to have certain procedures and it is worrysome. I may not even want the procedure but I surely would like some say-so between me and my doctor to be considered.
Early days of WebWhispers
Almost 10 years ago, we had a critical message to the list in answer to Dutch's request for some clarity in the messages and there was an uproar of agreement/disagreement to the extent that we had to stop the discussion. As a smaller group back then, it was not unusual to do that, and often some name calling and bringing back old arguments would take place.
We received a message after we had closed the discussion that was so sensible and so well written, that it broke my heart to have to say we could not re-open the discussion. I just found that message and would like to publish it now, lightly edited... not for the content or writing style, but to avoid criticisms of the other writers.
Writing to the List
We are survivors of a devastating life experience, and as such we are in need of useful information and encouraging support from WebWhispers members, not criticism of our linguistic or grammatical skills.
I was a teacher of English in high school before my surgery put a stop to that career. Like others of you, I often cringe a little at the literacy levels of some emailers to this site. However, it does not serve any good purpose to point this out, it merely marks one as being elitist and snobbish, in my opinion. We had the opportunity to become well educated, so what? It certainly didn't preclude me from getting throat cancer. I have gained so much helpful information from WebWhispers, and made some very good friends in the process. Whether or not their English is always up to my own exacting standards is irrelevant :-)
I understand and support the fact that Dutch asks members to ensure their e-mails make sense and effectively convey their problem or comment. That is a valid request and I applaud it, but to take it as far as some of you have is really not fair.
Life is far too short and precious to be bothering people about their lack of punctuation and/or poor grammar. Incidentally, many of you are not immune from using split infinitives, an over-use of commas and clumsily constructed sentences, yourself. I would suggest that you stop mentally editing as you read (and this is difficult as I know from personal experience) and look instead at the content. Remember that for many laryngectomees, computers are a very new and intimidating tool.
Finally, I would say to you, in all sincerity, not everyone has a deep interest in matters linguistic so please don't try to 'preach' to members of this vital website and keep your lecturing to the classroom. I just hate to think of all the hurt feelings caused to so many wonderful people, with your comments. They might now be too scared to put finger to keyboard in case they are awarded a D-.
Pat in Brisbane, Australia
A THOUGHT FOR THE DAY
Don’t put off until tomorrow,
things that should be done today.
Cos’ cruel fate could step right in,
and steal your chance away.
Don’t put off until, some other time,
the things you need to say.
You never know if there will be,
the chance of another day.
Don’t wait to say, “ I love you,”
till your voice may not be heard.
or whispered into frail ears,
who cannot understand your words.
So cradle one another’s hearts,
don’t let the feeling slip.
Through good and bad times, cling on,
don’t lose the loving grip.
Look warmly in each other’s eyes,
whilst still the chance is there.
Be thankful for each other,
and the pleasures that you share.
Browsers and Search Engines
Have you been Scroogled Lately?
You've probably seen the commercials recently by Microsoft that claims that its search engine Bing is safer and more secure than Google. Well, a German security firm did some testing and the results show that Google is actually safer than the competition. There are literally hundreds of search engines available to you, depending on your preferences. Besides the big names there are Surf Canyon, Dogpile, Yanex, Baidu, DuckDuckGo, and the list goes on. Each benefits from your use in ad revenue so if you have a particular interests, read more:
Do you have a favorite browser?
Browsers are comparable to a pair of shoes...either they fit comfortably or you wear them and put up with discomfort because you don't realize that you have a choice. There are many folks who use Internet Explorer or Safari simply because that is the browser that was bundled with their operating system. There are actually many great browsers available for you to choose from and all at no cost. And, yes, you can have more than one browser installed and you may use them as you wish.
For a Windows user, there is Internet Explorer, Chrome, Firefox, Comodo Dragon, Palemoon, Opera and Avanti...just to name a few. Comodo Dragon is a variant of Chrome and incorporates security features not found in Chrome. I have found it very fast and secure and enjoy the fact that it has an embedded security that I appreciate since I tend to be a bit cautious when online.
Palemoon is an optimized version of Firefox and comes in both 32 bit and 64 bit versions. If you are interested in trying it, but unsure of your system's spec's just use the 32 bit and you'll be fine. It is fast and allows you to add in extensions, which helps to customize your browsing experience. Safari is no longer supported for Windows so use it at your own risk.
For the Mac community you have Safari bundled with your OS, but you can also use Firefox if you would like to give it a try. Chrome is also a possibility.
Got a cell phone?
What if you lose it or it's stolen? What to do...what to do? The stats say that the average person will misplace or lose 4 cell phones in their lifetime...so plan on it now (and hopefully it will never happen). The link below is to a CNET article on precautions you can take and what to do when and if you wind up with a missing phone.
Do you use your PC for banking?
As most of us have done and will continue to do we go online and check our balances, verify deposits and even pay bills. We also need to be certain we are safe and secure from prying eyes. The link that follows gives some excellent guidance for us all.
Have you switched to Windows 8?
Windows 8 has become something of a hot potato in the tech world...most think it has been a major blunder on Microsoft's part, while the minority claim to love it. The OS is built around the touch screen interface you would expect to find on a tablet or smart phone. The acceptance by the community has been very slow since the true benefits of the new OS relies mostly on a touch screen device. The cost of the touch screen devices has driven up the cost of new devices from the average of $599 to $799 and has consequently caused many consumers decide to do without a new PC system and to live with the one they have that still does the job.
If you have decided to take the plunge into the new world of Windows 8 I am very interested in your opinion and if you would take a moment to put your thoughts in the computer section of our forum. I am certain our members would also enjoy hearing your thoughts and advice on Windows 8.
An Idiots Guide to the Internet!
A great primer for getting the basics down and staying out of trouble.
Free Alternatives to your Favorite Programs
This is an article by Bob Rankin that points out the similarities between paid for software and free open source programs...could save you hundreds of dollars.
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On the lighter side!
April Fool's comes but once a year...in case you missed these.
Do you find yourself wanting to have a cup of coffee with a favorite friend? Be sure to check into the Webwhispers Forum during the week and join the rest of us in sharing information in a "coffee in the morning" sort of way. All sorts of “hot” news and tips that make our lives richer and just plain fun. You'll find everything from Lary issues, life lessons, Marlene's greatest tips ever, and just plain fun. If you're not using this great little bit of high tech you are missing one of the best things in our Lary life. Hope to see you there.
Frank Klett, NJ 06/08
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