May 2010

Name Of Column Author Title Article TypeNews Views Pat Sanders Vit D - Ray Of Sunshine News & EventsVoicePoints M K Benjamin MA-CCC-SLP Medicare Strikes Again Education-MedWebWhispers Columnist Itzhak Brook Md My Voice ExperienceBetween Friends Donna McGary Our Stories CommentaryPractically Speaking Elizabeth Finchem Your Nose Knows Education My Neck Of The Woods Elspeth Thomson Heading Toward The Light ExperienceThe Speechless Poet Len Hynds Tales Of A London Bobby Prose & PoetryP.S. Terry Duga What Type Of Person CommentaryNew Members Listing Welcome News & Events

Vitamin D - A Ray of Sunshine!

I am careful to not get carried away as I write about items that we have to guess might help a condition. Severalfor arthritis have been proven over time and are now recommended by your doctor. Often, there is no way to tell ifit will help...so you try or experiment.

The latest of the vitamins to be touted as doing wonders for many problems is Vitamin D and there is definitely atest for proof that you are or are not deficient, so I'd like to tell you a little about it.

Very few foods have Vitamin D. Mostly, we get our it from the sun directly on the skin. Going out in the sun with along sleeved shirt and hat on is not the way to get Vitamin D so there is a conflict with everything we have beentold about sunscreens preventing cancer. Perhaps some of the Vitamin D deficient people are that way becausethey avoided the sun rays? If you have darker skin, you don't get as much Vitamin D out of it. Even 15 minutes ofsun on the skin will do wonders for your Vitamin D levels and will store for a while. Sitting in the rays from acomputer all day just doesn't add any of the good stuff! Growing older doesn't improve your chances of gettingenough from the sun.

According to the National Institute of Health, "Vitamin D obtained from sun exposure, food, and supplements isbiologically inert and must undergo two hydroxylations in the body for activation. The first occurs in the liver andthe second occurs primarily in the kidney and forms the physiologically active 1,25-dihydroxyvitamin D[1,25(OH)2D], also known as calcitriol."

Vitamin D is essential for promoting calcium absorption and helps protect older adults from osteoporosis andpromotes optimal general health. There are some fortified foods but the amounts of Vitamin D are very low. Thereare small amounts that may be added to some cereals, milk products and calcium fortified juices. Fish liver oils willadd the most of the food products although cheese and egg yolks have some in the form of D3.

These are some tips and warnings from ehow.com:Vitamin D3 is preferred over Vitamin D2 because it keep your blood levels higher for longer periods of time and VitaminD2 has a higher toxicity rate.As we age, our ability to absorb Vitamin D from the sun decreases, so it's important to get your levels checked even ifyou are outside a lot if you are over 50. AFter age 70, the skin does not convert Vitamin D effectively at all.Not everyone can take Vitamin D. Those with primary hyperparathyroidism, sarcoidosis, granulomatous disease shouldnot take this vitamin becuase they these conditions cause high blood Calcium which of course Vitamin D helps deliverto youir body. So avoid this vitamin if you have these conditions.

Mayoclinic.com gives us some ideas of the usefulness of Vitamin D:"The major biologic function of vitamin D is to maintain normal blood levels of calcium and phosphorus. Vitamin Daids in the absorption of calcium, helping to form and maintain strong bones. Recently, research also suggestsvitamin D may provide protection from osteoporosis, hypertension (high blood pressure), cancer, and severalautoimmune diseases.

Rickets and osteomalacia are classic vitamin D deficiency diseases. In children, vitamin D deficiency causesrickets, which results in skeletal deformities. In adults, vitamin D deficiency can lead to osteomalacia, which resultsin muscular weakness in addition to weak bones. Populations who may be at a high risk for vitamin D deficienciesinclude the elderly, obese individuals, exclusively breastfed infants, and those who have limited sun exposure.Also, individuals who have fat malabsorption syndromes (e.g., cystic fibrosis) or inflammatory bowel disease (e.g.,Crohn's disease) are at risk."

The more I read, the more I realize that the term General Health covers a lot more than we knew. This site:http://www.mayoclinic.com/health/vitamin-d/NS_patient-vitamind/DSECTION=evidencehas lists of illnesses that may be helped by Vitamin D. Some have research already done and they recommendmore be done for other diseases. Here are a few, for instance:

Cancer preventionHowever, it remains unclear if vitamin D deficiency raises cancer risk, or if an increased intake of vitamin D isprotective against some cancers. Until additional trials are conducted, it is premature to advise the use of regularvitamin D supplementation to prevent cancer.

Colorectal cancerData from a meta-analysis suggest that supplemental vitamin D may prevent the development of colorectal cancer.More research is needed in this area.

Diabetes (type 1/type 2)Type 1 diabetes : It has been reported that infants given calcitriol during the first year of life are less likely todevelop type 1 diabetes than infants fed lesser amounts of vitamin D. Other related studies have suggested usingcod liver oil as a source of vitamin D to reduce the incidence of type 1 diabetes. There is currently insufficientevidence to form a clear conclusion in this area. Type 2 diabetes : In recent studies, adults given vitamin Dsupplementation were shown to improve insulin sensitivity. Further research is needed to confirm these results.

supplementation were shown to improve insulin sensitivity. Further research is needed to confirm these results.

Tooth retentionOral bone and tooth loss are correlated with bone loss at non-oral sites. Research suggests that intake levels ofcalcium and vitamin D aimed at preventing osteoporosis may have a beneficial effect on tooth retention.

Although 2,000 IU has been recommended as a top daily dose, Mayo does tell of very high dosages for certaindiseases.

When I had my blood test (easy to do and paid for by my insurance) the first of the year, my test result was 24. Iwas way below what my level should be (probably 50-80 but certainly a minimum of 30+). So I have been takingan average of 7,000 IU a day for 3 months and I am due back for another check. For ease of taking, I boughtdrops that are 2,000 IU per drop and is D3 in olive oil. Easy to put 3 or 4 drops in a teaspoon with a little juice ormilk. The drops cost about $10 for a bottle that will last for months. The doctor had prescribed little hard gel caps,50,000, one time a week, but they were messy to take since I couldn't swallow them, and they were $28 for 12 ofthem. When I go for my blood test, I will leave him a print out of what I have been taking, with quantity the same.

I feel pretty good and am making it through pollen season quite well this year. Maybe I am just lucky but possibly itis the D3 deficiency being treated.

Enjoy,Pat W SandersWebWhispers President

VoicePoints written by professionals Coordinated by Meaghan Kane Benjamin, M.A., CCC-SLP meaghan.benjamin@mac.com

MEDICARE STRIKES AGAIN..... Or PECOS and YOU There has been much discussion regarding PECOS, prescriptions and reimbursement over the last few months.This article is meant to clarify some aspects of it.

First, some history: DME (Durable Medical Equipment) products have two separate governing bodies:

FDA (Food and Drug Administration) whose job it is to approve products for use. They can also determine if aproduct should require a prescription, as well as who is allowed to write the prescription in order for patient tohave access to the product.

CMS (Centers for Medicare & Medicaid Services) is the group that determines if they will pay for certain devices,what paperwork is required in order for reimbursement to be provided, and the exact amount they are willing topay for each device.

The FDA determined that in order for a patient to have access to medical devices related to laryngectomy care,either an SLP, MD, NP & PA can write a prescription for the device and, if the company selling device has aprescription on hand from any of the above listed, they can legally vend those items to the patient. This is notrelated to reimbursement but rather to access to the product.

CMS has always required a prescription and Certificate of Medical Necessity signed by an MD in order forreimbursement to be provided for these supplies.

Enter PECOS & NPI:

NPI and PECOS are separate divisions of CMS and each contains a separate database that an ordering/referringprovider needs to update.

NPI (National Provider Identification) - All providers should register and receive an NPI number from this division.

PECOS (Provider Enrollment, Chain and Ownership System) which is an internet based Medicare providerenrollment process where the provider enrolls/updates their billing information. All healthcare providers whoorder/refer Medicare patients must be enrolled in PECOS whether they are actually billing Medicare or not. Withregards to DME products, if you refer a patient to purchase a product from a company that is going to billMedicare, Medicare will ONLY reimburse for the product if a PECOS registered provider gave the referral.

If you are a provider whose services are NOT paid directly by Medicare but who refers patients to Medicare thenyou must still enroll. Those providers include:Department of Veterans AffairsDepartment of Defense TRICARE program

http://www.cms.gov/ is the new URL http://www.cms.hhs.gov/MedicareProviderSupEnroll/04_InternetbasedPECOS.asp.

You will likely need a NPPES (National Plan and Provider Enumeration System) user ID and password for thedownloads.

All providers should register in the NPI database and the PECOS database. CMS did cross reference the PECOSwebsite with the NPI database so if you updated your information in one of them and registered with both of them,your information will be updated in both and your NPI number will be added to the PECOS database. If youregistered in NPI and not PECOS, you need to go and register in PECOS.

Why is this important with regards to DME? Although there are many types of Medicare providers that will registerwith NPI and PECOS, only the following are able to write the prescription/CMN (Certificate of Medical Necessity)form that Medicare will recognize in order to approve reimbursement for the product. So, for the supplies of aMedicare beneficiary to be covered and paid, they must a prescription from one of the following:

doctor of medicine or osteopathydental medicinedental surgerypodiatric surgeryoptometrychiropractic medicinephysician assistantcertified clinical nurse specialistnurse practitionerclinical psychologistcertified nurse midwifeclinical social worker

Clarification: What is necessary for Medicare and many private insurances to reimburse for supplies?

Effective January 3, 2011 by Medicare (extended from the original date, April 5, 2010)Provider is:

enrolled and has an NPI numberenrolled in PECOSis indicated in PECOS as a specialty eligible to order Durable Medical Equipment items.

Why aren't speech therapists recognized as eligible to order/refer patients for durable medical equipment items thatare being submitted for reimbursement?

Think of DME like a visit to a medical specialty like GI. Speech Therapists can bill for their services andrecommend that the patient go see GI but the patient would need to receive the actual referral from their MD inorder for that visit to be covered. This has always been the case for both services and supplies.

order for that visit to be covered. This has always been the case for both services and supplies.

Patricia Peyton who works in the Provider/Supplier Enrollment Division of the Program Integrity Unit of CMS statedthat the ruling on the list of ordering/referring providers goes back many, many years. She recommended thatSLPs or their trade group make a concerted effort to contact Jim Bossenmeyer (410-786-9317) who is her bossand Director of the Division.

One main criteria for them to consider any such request would be is "Where is the doctor?" in the patient'streatment. She did state other clinicians not on the list are in the same boat and apparently did not make a strongcase to be added. They can bill for their services, but not order/refer supplies under Medicare.

I would propose that we as a unit find a way to organize with ASHA to make our case regarding our role in theongoing care with total laryngectomy patients as we are often the ones independently managing/choosing theappropriate devices required by our patients for effective communication while the MD is fully involved in themedical care the patient requires for treatment of cancer. I am not sure if they would be able to approve us for thisspecific aspect of patient care as the concern CMS mentioned is when the referral would extend beyondlaryngectomy care and we begin referring for walkers and medical visits to the cardiologist. It would be worth theinvestigation.

One final note, just to keep it totally confusing: If your patient is paying cash and no insurance is will be billed forreimbursement, the SLP CAN write the prescription and the patient can call and purchase what they need.

Meaghan Kane Benjamin, MA CCC SLP (Editor's Comment: Every laryngectomee should read this article, which will help them understand what is neverexplained to us fully. Who is able to place an order for DME and why it is that way. PWS)

MY VOICEItzhak Brook MD, Professor of PediatricsGeorgetown University Washington DC My Voice - A physician's personal experience with throat cancer

Chapter 1. Suspicions Learning that I had been diagnosed with cancer was overwhelming. It all happened unexpectedly, and I wascompletely unprepared for it. It all started about three months earlier, and in the most unlikely place.

My throat hurts really badly, I thought, as I lectured to an audience of over 200 Ear and Throat Doctors in Bursa,Turkey. The truth is, my throat was very irritated, and I found that strange because I wasn’t otherwise feeling ill atall. As soon as I finished my talk to my colleagues, I went to my hotel room and opened my mouth to see if I couldfind anything that might explain the pain, but I saw nothing. I rinsed and gargled water, but the pain did notsubside.

I was surrounded by hundreds of experienced otolaryngologists but, ironically, I could not ask any of them for help.This was because we were at a beautiful snow resort in the mountains, about 200 miles away from Istanbul, forthe Annual Meeting of the Turkish Society of Otolaryngology. They had invited me to give several lectures on headand neck infections. Most of the participating otolaryngologists there were with their families, enjoying the breakfrom their busy lives by skiing and partaking of other resort activities once they had followed the protocol of theirscientific agendas. I knew many of the doctors personally. As a physician and an infectious diseases specialist withspecial interest in head and neck infections for the past decade, I had been here to Turkey to lecture almostannually.

I did mention my symptoms to one of participants, and he offered to examine me in his clinic after the meeting, butI elected to wait and see if the irritating feeling would just go away with time. I decided to wait patiently until Ireturned to Washington DC, where I could be examined by my own otolaryngologist, Dr. Morell, the Head of theOtolaryngology Department at the Navy hospital in Bethesda, Maryland, where I also worked.

I had collaborated with Dr. Morell, his predecessors, and other residents and staff physicians for over twenty-sixyears, conducting clinical research studies of head and neck infections. We studied ear, sinus, and tonsil infections,and the Otolaryngology Clinic had nearly served as my second home for many years. I especially liked to workwith resident physicians and help them with their research projects. Some of the studies we did had preventedsurgical removal of the tonsils and improved the understanding of many infections. Because of thesecollaborations, I had the benefit of immediate access to the staff whenever I had any medical problem.

I saw Dr. Morell a few days after my return home. He examined me thoroughly and even performed anendoscopic examination, a test that enables the examiner to look directly inside the throat using a flexible tube asan optical instrument. The instrument not only provides an image for visual inspection and photography, but alsoenables biopsies, and it can even be used effectively in some minimally invasive surgery. Endoscopic proceduresare generally painless and, at worst, associated with mild discomfort. I was happy that Dr. Morell performed theendoscopic examination because it is the most thorough means of establishing a diagnosis.

The examination took about two minutes and confirmed his suspicion that I was again experiencing reflux, acondition for which I had been previously diagnosed and medicated. He changed the acid-reducing medication Iwas already taking, hoping that it would work better than the old one. I was happy to hear that he did not find anyother abnormalities.

Feeling reassured by Dr. Morell’s findings, I followed his recommendations and resumed my busy schedule just asbefore. I had many things to take care of in a short period of time, as I had been working as an InfectiousDiseases Physician in the US Navy for nearly twenty-six years and was approaching my age of retirement at sixty-five. I had no time to waste, for my retirement was only four months away. I had many research projects,numerous reports, and manuscripts to complete and could not afford the time for personal medical problems.Furthermore, the research institute I was associated with was interested in keeping me after my retirement, so Ineeded to prepare a research proposal to secure funding for continuous support of my research.

The sore throat ameliorated over the following weeks on the new medication, but a strange new sensationemerged – as if a piece of food was stuck in the back of my throat. I tried to cough it out and rinse it and evenused my fingers to probe the area, but it did not help. I ignored the bothersome feeling for quite some timebecause I was very busy and out of town working most of the time, and I simply did not have time to seek medicalhelp. Eventually, though, when the feeling did not subside, I finally went to see my otolaryngologist, Dr. Morell, ona Friday afternoon, arriving in his clinic directly from the airport.

I rarely used the unwritten privilege I had to walk in and ask to be seen right away. But this time, I instinctively feltthat what I had might be more serious than reflux. I was very grateful for the privilege that I had to be seen at amoment’s notice and often wondered how much delay happens in diagnosis and treatment of serious medical

moment’s notice and often wondered how much delay happens in diagnosis and treatment of serious medicalproblems in patients who do not have such an easy access to specialists.

Even though it was late in the day, Dr. Morell saw me right away and performed a very detailed examination. Tomy surprise and dismay, he this time observed a new finding in the back of my throat which had not been therefour weeks earlier. Using an endoscope, he observed a small polyp-like growth about the size of a small cornkernel (eight millimeters). Using a small monitor, I was able to watch as he maneuvered the endoscope andexplored the new findings. In spite of what he had found, Dr. Morell did not seem alarmed and managed to do agood job of not raising my concerns by explaining away the new findings as a possible reaction to a foreign bodysuch as a piece of fruit that got stuck in my throat just above the vocal cords. The small growth was behind thevalve that closes when we swallow (the epiglottis) – the valve that prevents us from inhaling food into our lungs. Iwas able to feel the small mass because the valve hit it whenever I swallowed.

Although I was reassured by Dr. Morell’s explanation that what I had was not serious in nature, his explanation didnot make complete sense to me at the time because I did not recall having anything stuck in my throat and couldnot completely understand how a foreign body could induce such a growth so rapidly. When the doctor left theroom for a minute, I questioned the junior resident who also observed the growth, asking her if she had ever seensuch a foreign body. Even though she said she had not, I accepted Dr. Morell’s explanation. Who was I to questionthe opinion of the department chief? Although head and neck infections are one of my major research interests, Iam not an expert in visualizing foreign bodies in the back of the throat. I also wanted to believe that this wassomething simple and not anything serious. The thought that it could be cancer did not even occur to me,especially since my surgeon reassured me that this was very unlikely in my case, considering I don’t smoke ordrink and am therefore at a low risk of developing throat cancer.

Besides, I was too busy to worry. My oldest daughter was getting married in two weeks, and I could not afford aserious medical problem. There are so many arrangements to be made, I rationalized to myself, and maybe I reallydo just have some piece of food stuck in my throat. I do tend to eat too fast and might have neglected to chew myfood well.

My doctor told me not to worry and advised me to see him again in a month. The irritation did not go away andbecame even more bothersome, so I decided not to wait a month. I returned to the Otolaryngology Clinic a weeklater on a Friday afternoon. Even though it was the second day of Passover and a non-working holiday for me, Ihad an appointment that afternoon at the Eye Clinic at the hospital. Since I was already in the hospital clinics andbecoming increasingly annoyed by a worsening strange sensation in my throat (which was probably aggravated byeating matzos), I decided to see my otolaryngologist again. As before, he did not turn me away and repeated hisexamination. Again, he observed the small mass that seemed to have grown a little larger over the span of aweek. I was able to see it myself on the special monitor and agreed with his assessment that it had grown largerin just a week’s time.

This time, the doctor was more aggressive, but he still managed to remain calm and not raise my concerns. Heoffered to take a small piece of the mass (a biopsy) and send it for pathological examination. He looked for aspecial new biopsy kit that had just arrived in the clinic – one he had not used before – and after finding it, heattempted to perform the biopsy. However, he ran into some difficulties and needed assistance. Unfortunately, itwas after four p.m., and the clinic was already empty. All the nurses, technicians, and other physicians who didwork that day had already left for the weekend. He immediately offered an alternative.

“I am going to perform a biopsy on Wednesday of next week,” he said. “This will be under general anesthesia, andyou could go home in the afternoon.”

Dr. Morell assured me it was a very minor procedure, and he seemed very unconcerned and underplayed hissuspicion that it might be more than just a benign mass.

Now, I faced a dilemma. My daughter’s wedding was in just nine days on the following Sunday. My wife and Iwere scheduled to fly to the west coast on Thursday and meet all the other members of our family who would alsoarrive on that day. The only one who would not be present was our youngest daughter, who was spending thesecond semester of her junior year of college in Cape Town, South Africa. There was too much at stake. We hadbeen working hard to prepare for the upcoming wedding. If something would go wrong with my anesthesia or“minor surgery,” everything would be spoiled. I even thought about my late father, who died from a sudden heartattack just three weeks before my wedding and never experienced the happy occasion. We had wanted topostpone our wedding after his sudden death, but the Rabbi insisted that it should proceed as scheduled, albeitwithout any celebration or dinner, insisting that it was the Jewish tradition. After that heartbreaking incident, I hadalways hoped to live long enough to experience my children’s weddings. So now, with this impending “minor

always hoped to live long enough to experience my children’s weddings. So now, with this impending “minorsurgery,” all I could wonder was, Should I risk it? Should I undergo a potentially risky procedure so close to thewedding? I wanted to live long enough to see more grandchildren and escort my other children to the weddingcanopy. All of those thoughts and weighing all the odds for and against postponing the procedure went through mymind in a matter of few minutes.

After much deliberation, I felt that the risks of anesthesia, the minor surgery, and any potential discomfort wereworth taking. Dr. Morell assured me that I would be in good shape to take the trip just one day after the biopsy, soI agreed to undergo the excision biopsy in five days.

I called my wife to tell her about the findings and the need for the biopsy. I tried to remain calm and underplay thepotential of a serious illness. I also still believed, or wanted to believe, that this was something benign. My doctorwas also reassuring me that this was nothing serious and that he had never seen any cancer that looked like thepolyp I had. It seemed I was rather successful in not raising my wife’s concerns, something I have always beengood at. Even when I was a child, my mother taught me to avoid alarming people with potential bad news, andthis was reinforced by years of practicing medicine. My wife tried to dissuade me from undergoing the procedure aday prior to the long trip and just three days before the wedding. She was concerned that I would have pain anddiscomfort that would detract from my ability to enjoy the happy occasion. In retrospect, she was correct, because Idid experience all of these and more. However, I was driven by a gut feeling that this mass shouldn’t be takenlightly – that it should be removed as soon as possible. Who knows? I thought, If it is indeed cancer, who can tellwhen it will spread to the rest of my body? I thought that even a week might make a difference.

Itzhak Brook MDWashington, DCThis book captures three years of my life that followed a throat cancer diagnosis and tells my personal story offacing and dealing with medical and surgical treatment and adjusting to life afterwards. This period of my life wasand is still very challenging and difficult. As a physician with lifelong experience in caring for patients, I gainedrealizations, insights and new perspective on these events. I felt for the first time the effects of severe illnessthrough the eyes of a patient and observed and experienced events I was never aware happened to them.

I am sharing my fears, anxieties, frustrations, failures, and ultimate adaptation and adjustment to life withcontinuous uncertainty about the future. After hearing other head and neck cancer survivors tell their stories, Irealized that mine is not unique. It is shared by many others.

It is my hope that the readers of this book will gain insight into the mind of a patient with a life threatening illnesssuch as cancer. I hope this book will assist others in dealing with trying times in their own lives. Most importantly, Ihope the book will shed light into the struggles that we face as patients with cancer of the head and neck and howwe strive to overcome them. Through my words and my story, it is my hope that physicians, nurses, and otherhealth care professionals may be more aware of what their patients actually experience, and patients who facesimilar hardships may find out how to cope with them.

Dr. Brook is a member of WebWhispers and a participant on our email list exchange."My Voice-A physician's personal experience with throat cancer" has just been published and printedcopies are available at: https://www.createspace.com/900004368Additional chapters will be added regularly to his blog at http://dribrook.blogspot.com/

Telling Our Stories

“My friends have made the story of my life. In a thousand ways they have turned my limitations into beautifulprivileges.” ~ Helen Keller

Turning limitations into beautiful privileges is a tough concept for me to grasp. But then, Helen Keller was aremarkable woman. I suspect most of you know who Helen Keller was and have read the book and/or seen themovie or play.

But, just in case…she was born in1880 and became blind and deaf at the age of four due to an illness;overcoming huge obstacles, she became the first deaf/blind person to earn a BA in the United States. Her story oflearning to communicate with her teacher, Anne Sullivan, was the basis for the book, play and movie, “The MiracleWorker”, which won numerous awards. She went on to become a renowned author and outspoken political activistfor progressive causes. Helen Keller died in 1968 and by then had become well known world- wide. She countedamong her friends such disparate individuals as Charlie Chaplin, Alexander Graham Bell and Mark Twain. [Igoogled her bio for this article, but she was one of my heroes as a little girl, after I read “The Story of My Life”, herautobiography.]

Frankly, most of our troubles pale in comparison. However, our troubles are pretty unusual and can also be veryisolating. The ability to communicate is central to our well-being. Practically all life shares that ability, and needapparently, in one form or another, but human beings are unique, so far as we know. We remember the past andimagine the future and we use our experiences to express our thoughts. Losing our primary means tocommunicate can be devastating, but when we share our thoughts with others some extraordinary things start tohappen.

“The Miracle Worker” was not such a huge success because so many folks shared her situation, but becausepeople drew strength and inspiration from her story to fight their own battles against adversity.

I truly believe that each of us has an important story to tell. It may not win us a place on the Best Sellers’ List or aNY Times Book Review, but that doesn’t mean it is not an important story that needs to be told.

What if you wrote your journey down, in your own words, in your own way and even one person wrote to yousaying, “I thought I was alone and no one understood, until I read your story. Thank-you.” OR “You wrote exactlywhat I was thinking. Nice job.” How would that make you feel?

Pretty darn good, I bet.

You have that opportunity. I know I sound like one of those advertorials…well, I guess I am, in a way. I believethat the power of WW is in our stories and I want to use your stories to expand our reach.

that the power of WW is in our stories and I want to use your stories to expand our reach.

Think of telling your story as paying it forward. You never know who it may touch.

Just check out this issue alone…did you know all that stuff about Vitamin D or even what a Neti Pot was? I needto really study Meaghan’s article- Medicare info is NOT just for providers/vendors, when it comes to coverage andthe new changes. For a change of pace, how about a few stories from “back in the day”. Laughter is a great tonic;as is finally having an afternoon with friends face to face who share a common struggle. I am sure you get mypoint.

Talk to us. We are waiting to hear from you. You can send your ideas and stories to editor@webwhispers.orgDon’t worry about spelling or grammar- that’s my job…it’s why I get the big bucks LOL! Seriously, we would loveto hear your story.

Your Nose Knows

Every now and then we read messages, sent as a bit of humor, stating that following laryngectomy the nose ismerely a decoration, a fixture or ‘prop’ attached to our faces. No doubt this is also meant to attract the attention ofmedical personnel or students to the fact that we no longer breathe through our nose and mouth. Let’s be clearabout the fact that the nose still knows… it remembers what its tasks are while it sits there on our faces standingguard against invaders like pollen and dust.

While it is true that the air that enters the nose and mouth post op no longer has a pathway to our lungs, there isalways air in the nose and mouth just as there was pre op. Whether we know it or not we do move this air aroundwith tongue movement. The nose does know…it ‘remembers’, with the support of many muscles, specific taskssuch as how we blow, sniff, smell, and produce mucus to collect debris that enters the nasal passages. The airmay blow in with the wind as we walk along and we can smell cut grass, ripe fruit in an open market, or the seabreeze. When we swallow we create enough suction to draw air into the nostrils. As we talk with our electrolarynx, esophageal speech or tracheal-esophageal prosthesis we also draw some air up into the nose as well asinto the mouth.

How does this work? With your lips together swallow the saliva in your mouth. As you tongue goes up for theundulating motion that gathers up all the saliva it creates enough suction to also draw down some thicker mucusfrom your sinuses. I recall reading a WW question concerning all the thick mucus produced in the mouth. Iwondered at the time if this person was unaware that this glob of jelly-like mucus probably came down from the

wondered at the time if this person was unaware that this glob of jelly-like mucus probably came down from thesinuses just as it did pre op.

Perhaps they didn’t pay attention to this body function before. Most of us know about postnasal drip that cancontinue to irritate the throat even after a total laryngectomy, so at some level we do know that the mouth andnose are still connected and function together as they always have.

My purpose for calling attention to this topic this month was triggered by the bumper crop of pollen we are alldealing with currently. Some will reach for over the counter pills to dry up the flow of mucus the nose and sinusesare producing to flush the irritating pollen out. If you are raising a lot of dust with your traditional ‘Spring Cleaning’you are also sneezing and dripping from the nose and in search of relief.

Several well knows ENTs have been interviewed in recent weeks on TV. Everyone of them that I’ve heardsuggested using either saline mist sprayed into the nostrils to flush the irritating debris stuck on the mucus, orusing a Neti Pot for a more thorough cleansing instead of the pills that dry out the nasal lining. Many of the allergypills tend to cause sleepiness, and post warnings about driving and working around machinery.

What’s a Neti Pot? It is a small vessel shaped like Aladdin’s lamp with a short spout and a small handle. Warm toroom temperature saline solution is poured into one nostril until it fills the sinuses and runs back out the othernostril for a thorough cleansing. You will want to do this while standing next to the sink for it can be a little messy,but so worth the effort to achieve relief from a nuisance. Most pharmacies and drug stories carry the Neti Pot withsaline solution packets. They run about $10.00-14.00. Shop around for the best deal. I had to ask the pharmacyclerk where this item could be found in their over the counter stash of a gazillion products. I’d rather takepreventative care than end up with a sinus infection and all that it takes to heal one.

Aren’t you glad to know that your nose is still functioning and doing its job? More than just a decoration, all thingsconsidered.

Clearly, I am not a doctor or a speech pathologist, but I’ve observed and learned a good deal about how my bodyworks during my post op years, and my own rehabilitation efforts. Now as I teach and write for the benefit of ournewest laryngectomees I am still trying to find new ways to clarify how we compensate and learn how to do manynormal activities in the easiest possible way with out using a lot of gizmos. Our bodies come well equipped toserve us well under any circumstance.

Elizabeth Finchem

HEADING TOWARDS THE LIGHT

For me, caring is a commitment to my husband, David, who I love very dearly. It's supporting his emotional andphysical needs and helping him to retain his pride and dignity the best way I know how. I don't consider myself tobe a carer, I am just looking after my husband, just getting on with it and doing what anyone else would do in thesame situation. I did not chose to be a carer; it just happened and I have to get on with it. If I did not do it, whowould and what would happen to David? We are now at a position on this lary journey that we see some light at theend of the tunnel.

I met David ten years ago; it was not a normal, run of the mill thing, David is a recovering alcoholic of fourteenyears and was doing counselling work for an alcohol service. I was one of his clients. I am a recovering alcoholic often years and without his help and support, I really do not know where I would be now.

For ten years, it has always been the two of us and we are very close, although we do argue, like all marriedcouples. Good friends are very few and far between because most of them were drinking buddies. When Davidwas diagnosed with cancer, we were on our own. Before David had his laryngectomy, I trawled the internet in orderto find out as much as I could. I came across two forums, Laryngectomy Life and WebWhispers. I joined both ofthese forums and remember thinking these might come in handy in the future. Little did I know how useful theywould become and how they would become part of my life.

Since joining these forums I have made contact with many wonderful people. Some I will probably never meet, butjust to know there is someone thousands of miles away thinking about us is the most wonderful feeling. To knowthat there are people in the same boat is heartening and to know that there are people who are in some of themost awful situations is very humbling.

It was through Laryngectomy Life that I "met" Christine Price, who many of you will know. I don't know how or whybut we just seemed to click. I received loads and loads of advice from Christine and we spent many a late nightchatting, all instigated by me, of course. She became a very good friend, and through her I "met" Wendy, also acarer for her husband, who has chronic myeloid leukaemia. The three of us became very close. I had never meteither of them in person but I just knew they were people I could rely on and trust. They live three hundred milesaway and my instinct told me that they were going to be friends for life. They have both had a rough time caring fortheir husbands and have done/ are still doing it and doing a wonderful job. I always feel that as a carer one cannever plan anything on the lary journey, but I made it a priority that I would meet them as soon as it was possible.

As a result, David and I went down to Wales last month and spent the most fantastic five days. We stayed withWendy and her family. Wales is a beautiful country and Wendy and her husband, Steve, took us to many lovelyplaces. As I said before, planning is a no-no on the lary journey and it was rather unfortunate that Christine wasnot able to come on our days out. However, she did manage to spend an afternoon with Wendy and me and wehad the most lovely time. I walked into her house and there were no awkward silences, I felt as if I had known herall my life. It was an afternoon away from it all, not thinking about caring and not thinking about husbands, for all ofus. It was an afternoon where batteries were recharged; we were on the loose and I have to say, one of the bestafternoons I have ever spent.

There is one good thing that has come out of David's illness and that is I have found people with whom I wouldnever have been in contact, good people all brought together by having one thing in common, "CANCER", a mosthorrible word and a most dreadful disease. Christine and Wendy have become very dear to David and me. It is anhonour to have them as my friends, so much so that we are imposing on their hospitality again and going back toWales in June.

I mentioned at the beginning of this article about the light at the end of the tunnel. For a long, long time, I couldsee no light. David has been through a rough time. As a carer I have done my best but sometimes I didn't think itwas good enough. At this moment in time, I do wonder if we will ever reach that light, perhaps we will, perhaps wenever will. David is doing well at the moment, that is all I can say. There is one thing I do know, I no longer feellonely. I have met friends who will be there for me for the rest of my life and for that I am very grateful.

Horseshoe Pass outside Llangollen David and me 14 months on from laryngectomy and warm hatbought in Snowdonia for the Scottish winter

True Tales from a London Bobby

A NEW KIND OF CENTRAL HEATING

There were several funny incidents that occurred during 1950, moments of light relief amongst the drama andsadness that most policemen experience. I was on night duty on the Brixton Road Crime Patrol, which consistedof four hundred yards of shops, both sides of the road, starting at the Oval, Kennington.

It was a cold clear night, when just normal breathing showed as wisps of steam. There were plenty of deepdoorways to get away from the cold and to have the occasional crafty cigarette. In a side road was a fish and chipshop, which also sold saveloys, faggots, pies and pease pudding. It closed at midnight and the owner liked the PCon duty in Brixton Road to walk down at closing time and move on any drunks or troublesome people. For thatsmall service, the PC could choose whatever supper he wanted.

I had chosen piping hot fish and chips, liberally sprinkled with salt and vinegar. Hiding it at my side I returned toBrixton Road, and getting into a deep shop doorway, I unwrapped it and started to partake. I had just startedeating when I saw the Duty Inspector’s car coming along slowly, and obviously looking for me. I had nowhere tohide my supper, so wrapped it quickly as best I could, and put it beneath my helmet. I stepped out onto thepavement so that he could see me and saluted him as he was about to drive by.

I had a sinking feeling when the car stopped, and he got out and walked towards me. I saluted again, andreported, " All correct sir," and he said that he would walk the patrol with me. So off I went again, trying all thosedoor handles, with him beside me, and trying to carry on a normal conversation.

The trouble was, that the fish and chips must have come out of the paper, and I could feel that it was burning thetop of my head. Coupled with that was the overpowering smell of vinegar, and I could feel something tricklingdown the side of my face. When we returned to his car, I was facing a plate glass window as we spoke, and withhorror I could see my reflection, and from the four air vent holes in the helmet, two on each side, spirals of steamwere rising in that cold night air.

As he got in his car and drove off, he was grinning all over his face. I hadn’t fooled him one bit.

HE WAS STRAIGHT WITH ME

For several years after the war there were thousands of bombed buildings about, and re-building still had a longway to go. Thieves used to infest these derelict buildings, stealing fittings, lead pipes and flashing, and these wereknown as 'The bluey boys'. Quite frankly, it was too easy to catch them, and I used to regard this form of arrest abit of a pain.

One of them with initiative, branched out into stealing car batteries during the night, purely to cut out the leadstrips inside. One morning at 4.am, just as the first streaks of dawn were appearing, I saw him pushing his barrow,going from car to car stealing the batteries, which were easy to get at in those days. I watched for a while, andthen got right up to him without him realizing it. I approached from behind and spun him round, and he was sostartled that he nearly dropped his latest acquisition which he had in his arms.

The trouble was, the acid in the battery shot out and went onto my face, but more importantly, into both eyes. Itwas not his fault, and purely an accident. We were near a telephone box and I pushed him inside. My eyes startedburning and I had difficulty in keeping them open. I told him to telephone for an ambulance, which he did. I tookmy prisoner with me in the ambulance to the Royal Eye Hospital, but the doctor thought I was taking things too farwhen I tried to take my prisoner into the treatment room.

I had to get him to promise that he would not run away, and when my eyes were washed out and I could seeagain, there he was sitting in the hallway, waiting for me. I phoned the station for the van to collect us and take usback to the barrow of stolen batteries. I had already made up my mind, in my usual perverse way, not to chargehim, as he had been straight with me, and could so easily have escaped.

He was astonished when we got back to the scene, and we replaced all the stolen batteries in the cars that hepointed out. I sent him on his way rejoicing!

Two days later I was on duty at the station, when a bewildered citizen came in, claiming that there were fairiesloose on the streets of London at night. He said that he had just checked his oil, and his battered very old batteryhad been replaced by a brand new one. I kept a very straight face when I made that report.

THE DISTRICT COMMANDER

I had been sent to District Headquarters to receive a commendation. I had arrested two burglars whilst on my wayhome and off duty. One of them had a powerful German army rifle, and as I chased them he stopped and fired twoshots at me. I managed to clobber them both with my truncheon before he could manage a third. A resident hadheard the shots and phoned for help, and I was rather pleased when the cavalry arrived with bells ringing.

When I arrived at H.Q. I was shown into a waiting room, where there were another five P.Cs, all from differentstations or divisions, but they were all on disciplinary charges. They were relating to the group, each in their turn,what misdemenour they had committed, and how many days pay they expected to be fined. It was all really pettystuff, but this commander was a strict disciplinarian. The only exception was a PC from P Division who sat next tome. He had been on night duty, when he had gone absent from his beat, in order to have a few passionate hourswith a lady whose husband was also a night worker. He had to scramble over the back garden wall, trying to getdressed when the husband returned home suddenly. Unfortunately (for him) he had left his bicycle in the bushesin the front garden, so he was traced.

He went in, in front of me, and when he came out he looked absolutely bewildered. He whispered," Hecomplimented me in upholding the best traditions of the force, and being on top of the job."

It was my turn next, and I stood to attention on the spot previously told, and stared fixedly at a picture of theQueen on the wall. The sergeant put my file on the desk and left the room. Out of the corner of my eye, I couldsee the commander standing near the window, scowling at me. He started walking up and down in front of me,and as he passed he peered into my face. I was reminded of Captain Queeg in the Caine Mutiny and his oddbehaviour, and I must have half smiled, because he suddenly snarled at me, " What is so funny" ?

I replied that this was my normal expression. He stood by the window again, and I heard him mutter, “Anotherman’s wife." He walked to the desk and read through the file, spluttering with suppressed anger. He walkedtowards me and glanced at my divisional letter and number, 509 L. He returned to the desk and looked at the fileagain.

"Oh", he said, " You’re here for a commendation."

It was quite obvious the poor sergeant had taken the wrong files in, and I had nearly got the sack, whilst theamorous young man had been commended. I wouldn’t have been in that sergeant’s shoes for all the tea in China.

What Type of Person Joins WebWhispers?by Terry Duga I had been thinking about writing something regarding attitude and approaching life's challenges for an article Patneeded for the May "Whispers on the Web." I even saved a fortune from a cookie to use as a lead-in. Then, onthe road to a hastily dashed off bit of fluff philosophy, we got our first full blown, well planned, scam.

Steve Bishop from the UK e-mailed me with the offending solicitation e-mail asking me if I had sent the requestfor donation. The posting was cleverly conceived. As abhorrent as I think the attempted scam is, I have to admire

the thought and effort that went into the letter.

The message told the tale of a 45 year old woman who had been sexually abused at fourteen and who isscheduled for the double whammy of a laryngectomy and breast cancer. She, reportedly, is in a dire financialsituation and can barely feed herself. The message sought donations via Money Gram or Western Union. It gavemy name and address and told people who donated to e-mail me to get a free neck breather pin.

Pretty specific stuff. Cleverly crafted. You "almost" have to admire the sick mind that originated this scam. Betterthan the Nigerian scam.

After I posted a warning, I received an e-mail from a member who hoped that none of our Webbies would fall forthe scam. This got me to thinking, why is this such a good scam for WebWhispers, and more so, forWebWhispers' members. To me, the answer is something I have always touted about our membership. We have alot of really generous people out there that have demonstrated the power of the Internet to do good.

Legitimate needs often come to our attention. While I cannot give exact instances, I remember times whensomeone has needed an electro larynx but could not afford one and had no insurance. Somehow, one wouldappear. Sometimes it came from the family of a deceased lary: sometimes from the mysterious Fat Freddy. Buthelp appeared.

One of my favorite instances involves the report of a young Russian girl who needed an electro larynx that ran onbatteries. Within about four hours, someone donated an EL and a member in Europe (I want it to be Marianne P.,but I have slept some since then) helped make arrangements to get the instrument to the girl and not to theRussian black market.

More recently, when we knew that Dutch had a terminal recurrence, we understood that we had to hire aprofessional firm to redesign our web site. The cost would be high -- $10,000, but necessary. Our then presidentposted a request for donations at midnight on a Saturday (actually between Saturday and Sunday). By noon onSunday, we had donations and pledges for about half of needed amount and a pledge to make up any shortfall ifthere were one. There was not a short fall. By the end of the week donations met our need, by the end of two orthree weeks we had almost double our needs and I had to fill out a full tax return for WebWhispers that year.Every time we go to our website, we see the results of the generosity of our membership.

I have often stated that although we do not have a large percentage of sustaining members, only about 1 in 10donate, I am not worried. I know that should the need arise, our members will meet the challenge and exceed allexpectations.

So, why was the scam such a good one? It targeted a group of people who prove day after day that they careabout others in need. Maybe that is something of which we should be a little proud.

We do not have an end to our Scam story but we are following up with proper authorities.

Welcome To Our New Members:

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors,and professionals who have joined our WebWhispers community within this past month. There is a great wealth ofknowledge and information to be accessed and obtained from our website, email lists, and newsletters. If everthere should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts"page of our website.

Thanks and best wishes to all,

Michael CsapoVP Internet ActivitiesWebWhispers, Inc.

We welcome the 37 new members who joined us during April 2010:

Patrice Been-Abbey - (SLP)New Orleans, LA

Bill ArgoCorbeil, Ontario, CAN

Frederick AverbergPittsburgh, PA

Pam BartonDubuque, IA

Barry BeaudoinLas Vegas, NV

Lyle BlevinsDecatur, NE

William BrandtBenicia, CA

Craig Coppaway - (Caregiver)Gibsonia, PA

Teri Dalton - (Caregiver)Frankenmuth, MI

Corey DanielsKeene, NH

Sheila F. Doyschen - (Medical)Phoenix, AZ

Brian GrangerBaytown, TX

Su Guatero - (Caregiver)Houston, TX

William H. Hershey Jr.Chapala, Mexico

Branden D Hicks - (Vendor)Cochran, GA

John HurleySuffern, NY

Robert E. KellerEverett, WA

Christa Koehler - (Caregiver)Keene, NH

Ray LeonardPrineville, OR

Charles LewisFresno, CA

Michael O'ConnellStaten Island, NY

Rudy OdorizziCarpentersville, IL

Alan Derek PeaceyOslo, Norway

Dejan Rancic - (Medical)Belgrade, Serbia

Bryan RhyasonCalgary, Canada

Daniel J. RubertiPaekville, MD

Maria del C. Ruberti - (Caregiver)Paekville, MD

John T. Russell Jr.Denton, TX

Duane SilversFrankemuth, MI

Gilbert SnodgrassSylacauga, AL

Michael SweeneyPotts Point, Australia

Elizabeth ThayerPensacola, FL

Peter TierneyHartlepool, UK

Susan Yao-Tresguerres - (SLP)Palo Alto, CA

Derek WhitescornMartinez, CA

Tommy WilliamsJackson Center, PA

Irene ZockGibsonia, PA

WebWhispers is an Internet based support group. Please check our home page for information about theWebWhispers group, our email lists, membership, or officers.For newsletter questions, comments or contributions, please write to editor@webwhispers.org Managing Editor - Pat Wertz Sanders Editor - Donna McGary Webmaster - Len Librizzi

Disclaimer: The information offered via WebWhispers is not intended as a substitute for professional medical help oradvice but is to be used only as an aid in understanding current medical knowledge. A physician shouldalways be consulted for any health problem or medical condition. The statements, comments, and/oropinions expressed in the articles in Whispers on the Web are those of the authors only and are not to beconstrued as those of the WebWhispers management, its general membership, or this newsletter's editorialstaff.

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