May 2010

 


 

 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Vit D - Ray Of Sunshine News & Events
VoicePoints M K Benjamin MA-CCC-SLP Medicare Strikes Again Education-Med
WebWhispers Columnist Itzhak Brook Md My Voice Experience
Between Friends Donna McGary Our Stories Commentary
Practically Speaking Elizabeth Finchem Your Nose Knows Education 
My Neck Of The Woods Elspeth Thomson Heading Toward The Light Experience
The Speechless Poet Len Hynds Tales Of A London Bobby Prose & Poetry
P.S. Terry Duga What Type Of Person Commentary
New 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. Several for arthritis have been proven over time and are now recommended by your doctor. Often, there is no way to tell if it 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 a test 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 a long sleeved shirt and hat on is not the way to get Vitamin D so there is a conflict with everything we have been told about sunscreens preventing cancer. Perhaps some of the Vitamin D deficient people are that way because they avoided the sun rays? If you have darker skin, you don't get as much Vitamin D out of it. Even 15 minutes of sun on the skin will do wonders for your Vitamin D levels and will store for a while. Sitting in the rays from a computer all day just doesn't add any of the good stuff! Growing older doesn't improve your chances of getting enough from the sun.

According to the National Institute of Health, "Vitamin D obtained from sun exposure, food, and supplements is biologically inert and must undergo two hydroxylations in the body for activation. The first occurs in the liver and the 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 and promotes optimal general health. There are some fortified foods but the amounts of Vitamin D are very low. There are small amounts that may be added to some cereals, milk products and calcium fortified juices. Fish liver oils will add 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 Vitamin D2 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 if you 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 should not take this vitamin becuase they these conditions cause high blood Calcium which of course Vitamin D helps deliver to 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 D aids in the absorption of calcium, helping to form and maintain strong bones. Recently, research also suggests vitamin D may provide protection from osteoporosis, hypertension (high blood pressure), cancer, and several autoimmune diseases.

Rickets and osteomalacia are classic vitamin D deficiency diseases. In children, vitamin D deficiency causes rickets, which results in skeletal deformities. In adults, vitamin D deficiency can lead to osteomalacia, which results in muscular weakness in addition to weak bones. Populations who may be at a high risk for vitamin D deficiencies include 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=evidence

has lists of illnesses that may be helped by Vitamin D. Some have research already done and they recommend more be done for other diseases. Here are a few, for instance:

Cancer prevention

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

Colorectal cancer

Data 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 to develop type 1 diabetes than infants fed lesser amounts of vitamin D. Other related studies have suggested using cod liver oil as a source of vitamin D to reduce the incidence of type 1 diabetes. There is currently insufficient evidence to form a clear conclusion in this area. Type 2 diabetes : In recent studies, adults given vitamin D supplementation were shown to improve insulin sensitivity. Further research is needed to confirm these results.

Tooth retention

Oral bone and tooth loss are correlated with bone loss at non-oral sites. Research suggests that intake levels of calcium 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 certain diseases.

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. I was way below what my level should be (probably 50-80 but certainly a minimum of 30+). So I have been taking an average of 7,000 IU a day for 3 months and I am due back for another check. For ease of taking, I bought drops 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 or milk. 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 of them. 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 it is the D3 deficiency being treated.

 

Enjoy,
Pat W Sanders
WebWhispers 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 a product should require a prescription, as well as who is allowed to write the prescription in order for patient to have 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 to pay 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 a prescription on hand from any of the above listed, they can legally vend those items to the patient. This is not related 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 for reimbursement 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/referring provider 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 provider enrollment process where the provider enrolls/updates their billing information. All healthcare providers who order/refer Medicare patients must be enrolled in PECOS whether they are actually billing Medicare or not. With regards to DME products, if you refer a patient to purchase a product from a company that is going to bill Medicare, 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 then you must still enroll. Those providers include:
Department of Veterans Affairs
Department 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 the downloads.

All providers should register in the NPI database and the PECOS database. CMS did cross reference the PECOS website 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 you registered 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 register with 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 a Medicare beneficiary to be covered and paid, they must a prescription from one of the following:

  • doctor of medicine or osteopathy
  • dental medicine
  • dental surgery
  • podiatric surgery
  • optometry
  • chiropractic medicine
  • physician assistant
  • certified clinical nurse specialist
  • nurse practitioner
  • clinical psychologist
  • certified nurse midwife
  • clinical 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 number
  • enrolled in PECOS
  • is 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 that are being submitted for reimbursement?

Think of DME like a visit to a medical specialty like GI. Speech Therapists can bill for their services and recommend that the patient go see GI but the patient would need to receive the actual referral from their MD in 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 stated that the ruling on the list of ordering/referring providers goes back many, many years. She recommended that SLPs or their trade group make a concerted effort to contact Jim Bossenmeyer (410-786-9317) who is her boss and Director of the Division.

One main criteria for them to consider any such request would be is "Where is the doctor?" in the patient's treatment. She did state other clinicians not on the list are in the same boat and apparently did not make a strong case 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 the ongoing care with total laryngectomy patients as we are often the ones independently managing/choosing the appropriate devices required by our patients for effective communication while the MD is fully involved in the medical care the patient requires for treatment of cancer. I am not sure if they would be able to approve us for this specific aspect of patient care as the concern CMS mentioned is when the referral would extend beyond laryngectomy care and we begin referring for walkers and medical visits to the cardiologist. It would be worth the investigation.

One final note, just to keep it totally confusing: If your patient is paying cash and no insurance is will be billed for reimbursement, 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 never explained to us fully.  Who is able to place an order for DME and why it is that way. PWS)

 


 

 

 


 

 

MY VOICE

Itzhak Brook MD, Professor of Pediatrics
Georgetown 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 was completely 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 at all. As soon as I finished my talk to my colleagues, I went to my hotel room and opened my mouth to see if I could find anything that might explain the pain, but I saw nothing. I rinsed and gargled water, but the pain did not subside.

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, for the Annual Meeting of the Turkish Society of Otolaryngology. They had invited me to give several lectures on head and neck infections. Most of the participating otolaryngologists there were with their families, enjoying the break from their busy lives by skiing and partaking of other resort activities once they had followed the protocol of their scientific agendas. I knew many of the doctors personally. As a physician and an infectious diseases specialist with special interest in head and neck infections for the past decade, I had been here to Turkey to lecture almost annually.

I did mention my symptoms to one of participants, and he offered to examine me in his clinic after the meeting, but I elected to wait and see if the irritating feeling would just go away with time. I decided to wait patiently until I returned to Washington DC, where I could be examined by my own otolaryngologist, Dr. Morell, the Head of the Otolaryngology 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-six years, 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 work with resident physicians and help them with their research projects. Some of the studies we did had prevented surgical removal of the tonsils and improved the understanding of many infections. Because of these collaborations, 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 an endoscopic examination, a test that enables the examiner to look directly inside the throat using a flexible tube as an optical instrument. The instrument not only provides an image for visual inspection and photography, but also enables biopsies, and it can even be used effectively in some minimally invasive surgery. Endoscopic procedures are generally painless and, at worst, associated with mild discomfort. I was happy that Dr. Morell performed the endoscopic 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, a condition for which I had been previously diagnosed and medicated. He changed the acid-reducing medication I was already taking, hoping that it would work better than the old one. I was happy to hear that he did not find any other abnormalities.

Feeling reassured by Dr. Morell’s findings, I followed his recommendations and resumed my busy schedule just as before. I had many things to take care of in a short period of time, as I had been working as an Infectious Diseases 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 I needed 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 sensation emerged – as if a piece of food was stuck in the back of my throat. I tried to cough it out and rinse it and even used my fingers to probe the area, but it did not help. I ignored the bothersome feeling for quite some time because I was very busy and out of town working most of the time, and I simply did not have time to seek medical help. Eventually, though, when the feeling did not subside, I finally went to see my otolaryngologist, Dr. Morell, on a 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 felt that what I had might be more serious than reflux. I was very grateful for the privilege that I had to be seen at a moment’s notice and often wondered how much delay happens in diagnosis and treatment of serious medical problems 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. To my surprise and dismay, he this time observed a new finding in the back of my throat which had not been there four weeks earlier. Using an endoscope, he observed a small polyp-like growth about the size of a small corn kernel (eight millimeters). Using a small monitor, I was able to watch as he maneuvered the endoscope and explored the new findings. In spite of what he had found, Dr. Morell did not seem alarmed and managed to do a good job of not raising my concerns by explaining away the new findings as a possible reaction to a foreign body such as a piece of fruit that got stuck in my throat just above the vocal cords. The small growth was behind the valve that closes when we swallow (the epiglottis) – the valve that prevents us from inhaling food into our lungs. I was 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 did not make complete sense to me at the time because I did not recall having anything stuck in my throat and could not completely understand how a foreign body could induce such a growth so rapidly. When the doctor left the room for a minute, I questioned the junior resident who also observed the growth, asking her if she had ever seen such a foreign body. Even though she said she had not, I accepted Dr. Morell’s explanation. Who was I to question the opinion of the department chief? Although head and neck infections are one of my major research interests, I am not an expert in visualizing foreign bodies in the back of the throat. I also wanted to believe that this was something 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 or drink 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 a serious medical problem. There are so many arrangements to be made, I rationalized to myself, and maybe I really do just have some piece of food stuck in my throat. I do tend to eat too fast and might have neglected to chew my food well.

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

This time, the doctor was more aggressive, but he still managed to remain calm and not raise my concerns. He offered to take a small piece of the mass (a biopsy) and send it for pathological examination. He looked for a special new biopsy kit that had just arrived in the clinic – one he had not used before – and after finding it, he attempted to perform the biopsy. However, he ran into some difficulties and needed assistance. Unfortunately, it was after four p.m., and the clinic was already empty. All the nurses, technicians, and other physicians who did work 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, and you could go home in the afternoon.”

Dr. Morell assured me it was a very minor procedure, and he seemed very unconcerned and underplayed his suspicion 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 I were scheduled to fly to the west coast on Thursday and meet all the other members of our family who would also arrive on that day. The only one who would not be present was our youngest daughter, who was spending the second semester of her junior year of college in Cape Town, South Africa. There was too much at stake. We had been 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 heart attack just three weeks before my wedding and never experienced the happy occasion. We had wanted to postpone our wedding after his sudden death, but the Rabbi insisted that it should proceed as scheduled, albeit without any celebration or dinner, insisting that it was the Jewish tradition. After that heartbreaking incident, I had always hoped to live long enough to experience my children’s weddings. So now, with this impending “minor surgery,” all I could wonder was, Should I risk it? Should I undergo a potentially risky procedure so close to the wedding? I wanted to live long enough to see more grandchildren and escort my other children to the wedding canopy. All of those thoughts and weighing all the odds for and against postponing the procedure went through my mind in a matter of few minutes.

After much deliberation, I felt that the risks of anesthesia, the minor surgery, and any potential discomfort were worth taking. Dr. Morell assured me that I would be in good shape to take the trip just one day after the biopsy, so I 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 the potential of a serious illness. I also still believed, or wanted to believe, that this was something benign. My doctor was also reassuring me that this was nothing serious and that he had never seen any cancer that looked like the polyp I had. It seemed I was rather successful in not raising my wife’s concerns, something I have always been good at. Even when I was a child, my mother taught me to avoid alarming people with potential bad news, and this was reinforced by years of practicing medicine. My wife tried to dissuade me from undergoing the procedure a day prior to the long trip and just three days before the wedding. She was concerned that I would have pain and discomfort that would detract from my ability to enjoy the happy occasion. In retrospect, she was correct, because I did experience all of these and more. However, I was driven by a gut feeling that this mass shouldn’t be taken lightly – that it should be removed as soon as possible. Who knows? I thought, If it is indeed cancer, who can tell when it will spread to the rest of my body? I thought that even a week might make a difference.

Itzhak Brook MD
Washington, DC

This book captures three years of my life that followed a throat cancer diagnosis and tells my personal story of facing and dealing with medical and surgical treatment and adjusting to life afterwards. This period of my life was and is still very challenging and difficult. As a physician with lifelong experience in caring for patients, I gained realizations, insights and new perspective on these events. I felt for the first time the effects of severe illness through 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 with continuous uncertainty about the future. After hearing other head and neck cancer survivors tell their stories, I realized 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 illness such as cancer. I hope this book will assist others in dealing with trying times in their own lives. Most importantly, I hope the book will shed light into the struggles that we face as patients with cancer of the head and neck and how we strive to overcome them. Through my words and my story, it is my hope that physicians, nurses, and other health care professionals may be more aware of what their patients actually experience, and patients who face similar hardships may find out how to cope with them.

 

 
 

 

 

 

 

 

Telling Our Stories


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


Turning limitations into beautiful privileges is a tough concept for me to grasp. But then, Helen Keller was a remarkable woman. I suspect most of you know who Helen Keller was and have read the book and/or seen the movie 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 of learning to communicate with her teacher, Anne Sullivan, was the basis for the book, play and movie, “The Miracle Worker”, which won numerous awards. She went on to become a renowned author and outspoken political activist for progressive causes. Helen Keller died in 1968 and by then had become well known world- wide. She counted among her friends such disparate individuals as Charlie Chaplin, Alexander Graham Bell and Mark Twain. [I googled her bio for this article, but she was one of my heroes as a little girl, after I read “The Story of My Life”, her autobiography.]


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


“The Miracle Worker” was not such a huge success because so many folks shared her situation, but because people 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 a NY 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 you saying, “I thought I was alone and no one understood, until I read your story. Thank-you.” OR “You wrote exactly what 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 believe 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 need to really study Meaghan’s article- Medicare info is NOT just for providers/vendors, when it comes to coverage and the 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 my point.


Talk to us. We are waiting to hear from you. You can send your ideas and stories to editor@webwhispers.org Don’t worry about spelling or grammar- that’s my job…it’s why I get the big bucks LOL! Seriously, we would love to 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 is merely a decoration, a fixture or ‘prop’ attached to our faces. No doubt this is also meant to attract the attention of medical personnel or students to the fact that we no longer breathe through our nose and mouth. Let’s be clear about the fact that the nose still knows… it remembers what its tasks are while it sits there on our faces standing guard 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 is always air in the nose and mouth just as there was pre op. Whether we know it or not we do move this air around with tongue movement. The nose does know…it ‘remembers’, with the support of many muscles, specific tasks such as how we blow, sniff, smell, and produce mucus to collect debris that enters the nasal passages. The air may blow in with the wind as we walk along and we can smell cut grass, ripe fruit in an open market, or the sea breeze. When we swallow we create enough suction to draw air into the nostrils. As we talk with our electro larynx, esophageal speech or tracheal-esophageal prosthesis we also draw some air up into the nose as well as into the mouth.


How does this work? With your lips together swallow the saliva in your mouth. As you tongue goes up for the undulating motion that gathers up all the saliva it creates enough suction to also draw down some thicker mucus from your sinuses. I recall reading a WW question concerning all the thick mucus produced in the mouth. I wondered at the time if this person was unaware that this glob of jelly-like mucus probably came down from the sinuses 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 can continue to irritate the throat even after a total laryngectomy, so at some level we do know that the mouth and nose 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 all dealing with currently. Some will reach for over the counter pills to dry up the flow of mucus the nose and sinuses are 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 heard suggested using either saline mist sprayed into the nostrils to flush the irritating debris stuck on the mucus, or using a Neti Pot for a more thorough cleansing instead of the pills that dry out the nasal lining. Many of the allergy pills 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 to room temperature saline solution is poured into one nostril until it fills the sinuses and runs back out the other nostril 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 with saline solution packets. They run about $10.00-14.00. Shop around for the best deal. I had to ask the pharmacy clerk where this item could be found in their over the counter stash of a gazillion products. I’d rather take preventative 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 things considered.


Clearly, I am not a doctor or a speech pathologist, but I’ve observed and learned a good deal about how my body works during my post op years, and my own rehabilitation efforts. Now as I teach and write for the benefit of our newest laryngectomees I am still trying to find new ways to clarify how we compensate and learn how to do many normal activities in the easiest possible way with out using a lot of gizmos. Our bodies come well equipped to serve 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 and physical needs and helping him to retain his pride and dignity the best way I know how. I don't consider myself to be a carer, I am just looking after my husband, just getting on with it and doing what anyone else would do in the same 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, who would and what would happen to David? We are now at a position on this lary journey that we see some light at the end 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 fourteen years and was doing counselling work for an alcohol service. I was one of his clients. I am a recovering alcoholic of ten 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 married couples. Good friends are very few and far between because most of them were drinking buddies. When David was diagnosed with cancer, we were on our own. Before David had his laryngectomy, I trawled the internet in order to find out as much as I could. I came across two forums, Laryngectomy Life and WebWhispers. I joined both of these forums and remember thinking these might come in handy in the future. Little did I know how useful they would 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, but just to know there is someone thousands of miles away thinking about us is the most wonderful feeling. To know that there are people in the same boat is heartening and to know that there are people who are in some of the most 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 why but we just seemed to click. I received loads and loads of advice from Christine and we spent many a late night chatting, all instigated by me, of course. She became a very good friend, and through her I "met" Wendy, also a carer for her husband, who has chronic myeloid leukaemia. The three of us became very close. I had never met either of them in person but I just knew they were people I could rely on and trust. They live three hundred miles away and my instinct told me that they were going to be friends for life. They have both had a rough time caring for their husbands and have done/ are still doing it and doing a wonderful job. I always feel that as a carer one can never 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 with Wendy and her family. Wales is a beautiful country and Wendy and her husband, Steve, took us to many lovely places. As I said before, planning is a no-no on the lary journey and it was rather unfortunate that Christine was not able to come on our days out. However, she did manage to spend an afternoon with Wendy and me and we had the most lovely time. I walked into her house and there were no awkward silences, I felt as if I had known her all my life. It was an afternoon away from it all, not thinking about caring and not thinking about husbands, for all of us. It was an afternoon where batteries were recharged; we were on the loose and I have to say, one of the best afternoons 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 would never have been in contact, good people all brought together by having one thing in common, "CANCER", a most horrible word and a most dreadful disease. Christine and Wendy have become very dear to David and me. It is an honour to have them as my friends, so much so that we are imposing on their hospitality again and going back to Wales 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 could see no light. David has been through a rough time. As a carer I have done my best but sometimes I didn't think it was good enough. At this moment in time, I do wonder if we will ever reach that light, perhaps we will, perhaps we never will. David is doing well at the moment, that is all I can say. There is one thing I do know, I no longer feel lonely. 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 hat bought 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 and sadness that most policemen experience. I was on night duty on the Brixton Road Crime Patrol, which consisted of 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 deep doorways to get away from the cold and to have the occasional crafty cigarette. In a side road was a fish and chip shop, which also sold saveloys, faggots, pies and pease pudding. It closed at midnight and the owner liked the PC on duty in Brixton Road to walk down at closing time and move on any drunks or troublesome people. For that small 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 to Brixton Road, and getting into a deep shop doorway, I unwrapped it and started to partake. I had just started eating when I saw the Duty Inspector’s car coming along slowly, and obviously looking for me. I had nowhere to hide my supper, so wrapped it quickly as best I could, and put it beneath my helmet. I stepped out onto the pavement 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, and reported, " All correct sir," and he said that he would walk the patrol with me. So off I went again, trying all those door 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 the top of my head. Coupled with that was the overpowering smell of vinegar, and I could feel something trickling down the side of my face. When we returned to his car, I was facing a plate glass window as we spoke, and with horror I could see my reflection, and from the four air vent holes in the helmet, two on each side, spirals of steam were 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 long way to go. Thieves used to infest these derelict buildings, stealing fittings, lead pipes and flashing, and these were known as 'The bluey boys'. Quite frankly, it was too easy to catch them, and I used to regard this form of arrest a bit of a pain.

One of them with initiative, branched out into stealing car batteries during the night, purely to cut out the lead strips 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, and then got right up to him without him realizing it. I approached from behind and spun him round, and he was so startled 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. It was not his fault, and purely an accident. We were near a telephone box and I pushed him inside. My eyes started burning and I had difficulty in keeping them open. I told him to telephone for an ambulance, which he did. I took my prisoner with me in the ambulance to the Royal Eye Hospital, but the doctor thought I was taking things too far when 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 see again, there he was sitting in the hallway, waiting for me. I phoned the station for the van to collect us and take us back to the barrow of stolen batteries. I had already made up my mind, in my usual perverse way, not to charge him, 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 he pointed 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 fairies loose on the streets of London at night. He said that he had just checked his oil, and his battered very old battery had 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 way home and off duty. One of them had a powerful German army rifle, and as I chased them he stopped and fired two shots at me. I managed to clobber them both with my truncheon before he could manage a third. A resident had heard 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 different stations 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 petty stuff, but this commander was a strict disciplinarian. The only exception was a PC from P Division who sat next to me. He had been on night duty, when he had gone absent from his beat, in order to have a few passionate hours with a lady whose husband was also a night worker. He had to scramble over the back garden wall, trying to get dressed when the husband returned home suddenly. Unfortunately (for him) he had left his bicycle in the bushes in 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," He complimented 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 the Queen on the wall. The sergeant put my file on the desk and left the room. Out of the corner of my eye, I could see 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 odd behaviour, 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, “Another man’s wife." He walked to the desk and read through the file, spluttering with suppressed anger. He walked towards me and glanced at my divisional letter and number, 509 L. He returned to the desk and looked at the file again.

"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 the amorous 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 Pat needed for the May "Whispers on the Web." I even saved a fortune from a cookie to use as a lead-in. Then, on the 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 request for 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 is scheduled for the double whammy of a laryngectomy and breast cancer. She, reportedly, is in a dire financial situation and can barely feed herself. The message sought donations via Money Gram or Western Union. It gave my 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. Better than 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 for the scam. This got me to thinking, why is this such a good scam for WebWhispers, and more so, for WebWhispers' members. To me, the answer is something I have always touted about our membership. We have a lot 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 when someone has needed an electro larynx but could not afford one and had no insurance. Somehow, one would appear. Sometimes it came from the family of a deceased lary: sometimes from the mysterious Fat Freddy. But help appeared.

One of my favorite instances involves the report of a young Russian girl who needed an electro larynx that ran on batteries. 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 the Russian black market.

More recently, when we knew that Dutch had a terminal recurrence, we understood that we had to hire a professional firm to redesign our web site. The cost would be high -- $10,000, but necessary. Our then president posted a request for donations at midnight on a Saturday (actually between Saturday and Sunday). By noon on Sunday, we had donations and pledges for about half of needed amount and a pledge to make up any shortfall if there were one. There was not a short fall. By the end of the week donations met our need, by the end of two or three 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 10 donate, I am not worried. I know that should the need arise, our members will meet the challenge and exceed all expectations.

So, why was the scam such a good one? It targeted a group of people who prove day after day that they care about 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 of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there 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 Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

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

 

Patrice Been-Abbey - (SLP)
New Orleans, LA
Bill Argo
Corbeil, Ontario, CAN
Frederick Averberg
Pittsburgh, PA
     
Pam Barton
Dubuque, IA
Barry Beaudoin
Las Vegas, NV
Lyle Blevins
Decatur, NE
     
William Brandt
Benicia, CA
Craig Coppaway - (Caregiver)
Gibsonia, PA
Teri Dalton - (Caregiver)
Frankenmuth, MI
     
Corey Daniels
Keene, NH
Sheila F. Doyschen - (Medical)
Phoenix, AZ
Brian Granger
Baytown, TX
     
Su Guatero - (Caregiver)
Houston, TX
William H. Hershey Jr.
Chapala, Mexico
Branden D Hicks - (Vendor)
Cochran, GA
     
John Hurley
Suffern, NY
Robert E. Keller
Everett, WA
Christa Koehler - (Caregiver)
Keene, NH
     
Ray Leonard
Prineville, OR
Charles Lewis
Fresno, CA
Michael O'Connell
Staten Island, NY
     
Rudy Odorizzi
Carpentersville, IL
Alan Derek Peacey
Oslo, Norway
Dejan Rancic - (Medical)
Belgrade, Serbia
     
Bryan Rhyason
Calgary, Canada
Daniel J. Ruberti
Paekville, MD
Maria del C. Ruberti - (Caregiver)
Paekville, MD
     
John T. Russell Jr.
Denton, TX
Duane Silvers
Frankemuth, MI
Gilbert Snodgrass
Sylacauga, AL
     
Michael Sweeney
Potts Point, Australia
Elizabeth Thayer
Pensacola, FL
Peter Tierney
Hartlepool, UK
     
Susan Yao-Tresguerres - (SLP)
Palo Alto, CA
Derek Whitescorn
Martinez, CA
Tommy Williams
Jackson Center, PA
     
Irene Zock
Gibsonia, PA
   

 

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers 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 or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
As a charitable organization, as described in IRS § 501(c)(3), the WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions in accordance with IRS § 170.
 
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