|Name Of Column
||Choosing a New Doctor?
||News & Events
||Find Your Path
||Problems with laryngectomee supplies
||The Comfort of Cold Porridge
|The Speechless Poet
||Len A Hynds
||The Spring Fanfare
||Prose & Poetry
|Bits, Bytes & No Butts!
||New phones, Windows 10 and Controversy
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
Choosing a New Doctor?
I thought I was all set with my medical “team”. I knew just who to go to and when. Then last summer, my doctor announced he was retiring.. no, not age, a chronic illness, so it really had to be and my pre-set yearly appointment for early this year was to be cancelled. Of course, they brought in a substitute to help for a few months and some switched to the other two docs in the same practice. I saw the substitute on 9/1/15 and had some blood tests run. The substitute has now gone back to her usual job and I was still willing to wait for the new doctor because I thought I could fall back on one of the other two for the yearly appointment….and , surely, they would hire a new person... then, as the new year came, I turned in some still active scripts for refills. My druggist filled two and insurance refused two that they said required a new script or no meds, since there was no active doctor.…. and all four were now expired for refills.
So I called my doc’s office and found out I am out in the cold. No doc, no scripts and no appointment with the others. Gee, I had been going to that doc for only 28 years! I spent most of this weekend trying to figure out what to do…where to go. If you have to make a major change in your health care, it is worth checking for what is out there.
When I looked through one whole group of affiliated doctors of different locations, but all connected, I found most of them had a note on their website, not accepting new patients. A friend in another state told me a couple years ago that she had trouble getting a new doctor because so many said no Medicare. I haven’t run into that yet.
I think I know what I want…if I can get one: I would like a doctor that specializes in the elderly. I am coming to the conclusion that as we age, our needs do change. We sometimes take less medication to do the job we need. The doctor of that persuasion might also recognize symptoms of aging that leave hands hurting or bones aching as something different than a family doc would see. And it is not like I will wake up next week and find the problem cured! Just found that the kind of doctor at this hospital group of clinics uses doctors for the elderly in situations like hospice or palliative care... Nope, not ready for that right now!
Well, I finally got an appointment through a very helpful nurse navigator with that same group. Thought, with my past history being on the online section of their website, it would be a lot easier. First thing they asked me for was to bring with me the "new patient" form that I could print out from the site. 14 pages. Fill it in and bring all my medications that I take, plus.... a whole list of things. When you are as old as I am, there is a lot of history! I don't even remember everything I've had.
I tell myself that it will be effective, but still think many of the items I have to get together to bring will never be looked at...but is needed to have as a CYA backup record .Guess a large briefcase will hold it all and I better start packing.
Find Your Path
As my patients progress through the various stages of treatment and recovery, they are faced with myriad issues and stressors surrounding anatomical, physiological and psychosocial changes. Sharing stories of their diagnosis, discussing treatments, counseling others, and seeking the advice of others can be a source of mutual strength and inspiration along the way. To that end, I frequently encourage patients to reach out to their peers as well as their families and medical teams for support and camaraderie.
In the March 2012 edition of VoicePoints, Kimberly Unger, LMSW discusses the benefits of this type of support system in her article entitled The Other Side of Healing. She writes: “ As time passes and recovery progresses, the anxiety and stress decrease. A good support system can help relieve stressors as well. Especially for the laryngectomy patient, support from family and friends and peer support can provide the unconditional acceptance and understanding that is so important in recovery. Peer support provides the practical and personal ‘been there, done that’ advice that can reduce the fear of the unknown and provide a positive incentive to new patients.”
Unconditional acceptance and understanding. That is what a support system can provide. Head and neck cancer voice club or resource group meetings are an ideal place to find this support from peers, family members and other caregivers and mentors. If you have never attended your local voice club meeting or head and neck resource group, I urge you to to give it a try. There will likely be someone who could use your insights and would appreciate you telling your story.
You may ask, “How else shall I.... channel my enthusiasm/show my gratitude that I am a survivor/become involved in the rehabilitation of others?” Have you considered volunteering your time and/or resources to help other individuals affected by head and neck cancer? The WebWhispers library is a place to start, with links to various excellent organizations with volunteer opportunities. One such group is The Oral Head and Neck Cancer Alliance (OHANCA). OHANCA is a nonprofit organization dedicated to advancing “prevention, detection, treatment and rehabilitation of oral, head and neck cancer through public awareness, research, advocacy and survivorship.” Throughout the year, its members and volunteers work with local communities to provide provide free oral, head and neck cancer screenings throughout the US and abroad. Each April, volunteers are recruited to hold screenings at sites throughout the country and special awareness events (runs/walks) and fundraisers (SmashCancer) are held in OHANCA’s headquarters in Charleston, SC. This year, the OHANCA Week (OHANCAW) will be held April 10-16, 2016. It is not too late to volunteer to work with local patients, caregivers, researchers, funders, and clinicians of oral, head and neck cancer. You could be instrumental in hosting a screening, working with an established screening site, or starting a local chapter of OHANCA. The OHANCA website has detailed information about their mission and programs. Here you can also find out where screenings are currently taking place. Who knows, you may discover a need that you can help fill?!
While these suggestions are not a comprehensive list, they represent some wonderful options that you may not have yet considered along your path of healing, whether you are a patient, caregiver, or clinician. And finally, please share with the WebWhispers. We want to hear from you, our readers, through your comments to our editors, contributions to our library, and/or comments on the daily digest....Let us know what has helped you along the way and what you want to see more of on these pages. I look forward to hearing from you.
Volunteering on WebWhispers: www.webwhispers.org/library/Volunteerism-General.asp
Oral, Head and Neck Cancer Alliance: www.headandneck.org/get-involved/ohancaw.
History and Mission of the OHANCA: http://www.webwhispers.org/news/Jun2014.asp
March 2012 VoicePoints, The Other Side of Healing: http://www.webwhispers.org/news/mar2012.asp
Kim Almand, M.S., CCC-SLP, VoicePoints Coordinator
Foothills ENT, Allergy and Hearing Maryville, Tennessee
This was recently posted on the WebWhispers Facebook page by Mike Rosencrantz (AKA Shmuel Mitchell) and it really resonated with me.
“As a single footstep
will not make a path on the earth,
so a single thought
will not make a pathway in the mind.
To make a deep physical path,
we walk again and again.
To make a deep mental path,
we must think over and over
the kind of thoughts
we wish to dominate our lives.”
~ Wilferd Arlan Peterson~
I had to look up the author, Wilferd Arlen Peterson, and discovered he was a prolific American writer (1900-1995) of inspirational pieces, most famously “The Art of Marriage”. He wrote for This Week (a Sunday newspaper supplement), Science of Mind and was a frequent contributor to the Reader’s Digest. I am sure some of you are familiar with his writings although I had never heard of him; I must have read some of his pieces over the years, Reader’s Digest being a staple in my home growing up. It is the type of thoughtful, pithy writing that undoubtedly became the basis for many Sunday sermons and after dinner speakers throughout mid 20th century America and for good reason. It exemplifies the kind of positive, generous, can do attitude that is so characteristic of that era.
I am not sentimentally nostalgic for the good old days of any era. They were not good in many ways for many people but I am deeply disturbed by the lack of civil discourse and simple human decency in so many aspects of modern life. I will not get on my soapbox here, I promise, but I expect you get my drift. I don’t expect to hear anything approaching the humble eloquence of Mr. Peterson in the national arena anytime soon.
All the more reason for us regular folks to make an effort – to think globally and act locally. I do believe it is possible to change the world one life at a time and no doubt the best place to start is right at home. Although I admit it is MUCH easier and SO much more gratifying to identify the problem and try to administer the solution to someone else the only one we can be assured of changing is our own darn self.
And that brings me back to that wise fellow, Wilferd. If you Google him you will find a wealth of his sayings & writings. They all share a similar sentiment. There is not a hint of self-pity or entitlement nor of bullying self-aggrandizement. He seemed to be saying simply but in his inimitable way, be good, be kind, be responsible, be respectful, be compassionate to yourself and those around you. In a world where so many of us are constantly vying for attention for the most un-noteworthy acts to suggest we behave like a decent human being just because it is the right thing to do is positively revolutionary!
These are the last few lines of his poem “The Art of Marriage” and I think they can apply to any relationship- from the familial to the political and all points in between.
“It is speaking words of appreciation, and demonstrating gratitude in thoughtful ways.
It is having the capacity to forgive and forget.
It is giving each other an atmosphere in which each can grow.
It is a common search for the good and the beautiful.
It is not only marrying the right person -- it is being the right partner."
"Do you have problems with laryngectomee supplies?"
For example: you might tell us what you use, how long do they last, do you have to travel to have it changed, have the new Medicare rules affected you, do you have an insurance problem, and how much is your co-pay if any?
Tom Whitworth – Powder Springs, GA
During my first month following laryngectomy, I learned that insurance was not going to cover my supplies. We had been told that they would be covered. What we weren't told was that my carrier had no in-network provider, and since I had not met any of the out-of-network....You get the picture. During my first five months following surgery, I survived with the one month's worth of supplies I got stuck with the bill for, and samples from my SLP and suppliers.
By month five, I had been referred to the Veteran's Administration and there I found my Lary Home. The Atlanta VAMC now covers absolutely everything I need. The first visit, I walked out with a bag full of supplies and on my second visit, I became the proud owner of my very own TruTone EL, which I love still as my backup. My VAMC is roughly an hour away, but in Atlanta, so is everything else from where I live.
Due not to a supplier quality issue, but to my TEP and stoma changes in the first 18 months, I have used all but one of the TEP prostheses on the market that I am aware of, not counting patient- changeables. At first, they would last two to three months and we began trying others as the replacements got closer and closer together. My last two were in place for seven weeks, followed by only three weeks. My current, the ATOS Activalve, has been in place three months and shows no sign of problems (Knock on wood, plastic, wallboard, and aluminum foil!). If all goes as planned and expected, I could be six to nine months with this one. This one is really expensive, so I would have no chance of getting it without the Atlanta VAMC. I have no copays except for minor ones on RX drugs. I am truly a grateful old salt (Navy Chief, retired reserve).
David Kinkead – Peoria ,AZ
Class of 2013
I am very fortunate to have good insurance. While Medicare is available to me, I am covered under a plan at my wife's place of employment. Even though I have to deal with two different suppliers, getting my supplies are not a problem. I go through EdgePark for HME's (Xtramoist) and Optidem adhesives. I pay $8.64 for a box of 30 HME's and the exact same price for a box of 20 Optiderm adhesives. I go through Apria for the Stabilibase adhesives and pay only $3.09 for a box of 15. I use Stabilibase almost exclusively now but do use the Optiderm when my neck gets irritated. I have my prosthesis changed out at the Mayo clinic and my copay after I meet deductible is $117.37. All in all my insurance takes pretty good care of me and I consider myself lucky in this regard after hearing some horror stories about coverage at support meetings.
Pat Sanders - 1995
I have used the self changable, low pressure Blom-Singer for my TE puncture since I had it done in 1996. Currently, I use 3 units a year so I change it about every 4 months. Normally they are almost fully covered in cost, but the last time I bought two ($76 each), there was an error in the Medicare report to the Medigap policy and the wrong figure was put in, so their check to me was short about $50 of paying for them. It is not easy to get anyone in the insurance field, government or private to go back and correct anything! I've sent copies of everything but no reply....yet. I will not hold my breath.
Gertrude Hester - New Bern, NC
I live in NC I have to travel over 200 hundred miles to get my TEP replaced, constantly having problems with insurance to pay for medical supplies. Have had problems since 2013 when I become laryngectomee. Have found it best to get supplies directly through hospital ENT center, when I go for checkup, since I need both trachea tube (to breathe) and TEP ( to talk). Tried ordering from companies and costs usually ranged about $300 per order, even with insurance paying their percentage, so I just gave up.
Most of the things I tried for speaking don't work and some have needed repair often so I'm at the place where I've decided to use TEP and esophageal speech when I can get some more training. As for supplies I have reach the conclusion that when they have a sell on the things I need I will stock up, as I found they do periodically have discounts.
Len Hynds – Newtown, UK
Since I came to medical professions attention some 22 years ago, I have had nine operations, four quite serious ones, the longest one being eight hours, and all performed by the very best consultant surgeons. And being in England it hasn't cost me a penny.
I dread to think what I have cost the National Health Service, both in medication and constant supplies during that period. Always delivered instantly or the next day, and money has never been mentioned, as all medical services are free in England.
I did buy a back-up TruTone in case my voice faltered at some critical time, but I rarely use it. I also bought a voice magnifier for when I am talking to an audience in a large hall. I am often saddened to read what my American friends have to suffer in dealing with the insurance companies.
Rex Schardein – Louisville, KY
I bought directly from InHealth and I paid their catalog price. From my LP16 008 IR it was $120. At this time I heard from my SLP that maybe EdgePark could help by filing my claim with Humana. The EdgePark quoted price is $5.50. These are currently on back order.
I had an event late last year that put me over a deductible for in network. Buying from EdgePark is considered to be in network and buying from InHealth is not.
The following are excerpts from past postings on WebWhispers:
A. I'm on BCBS, and they don't cover supplies I order through ATOS. Inconvenient, and I could argue that without supplies I would likely die, but I doubt they're listening. Not sure what argument one could make -insurance companies are in this for profit, not patients. Perhaps a petition from all 14,000 laryngectomees would get someone's attention.
I have been on disability since my Laryngectomy. I pay $105.00 a month for disability insurance. Way over priced for what little they cover! When I order my supplies I use a credit card to pay for the items and In Health does a fantastic job of getting my paperwork to Medicare. Then in about 30 days I receive a check for about 50% of what I paid for the supplies. This does not included the yearly deductible of $175.00!
The only real problem with the government is they pay 80% of what they feel the item should cost! Not the true cost of the items.
B. Since I went on Medicare thirteen years ago, I have been constantly amazed at how CMS determines the reimbursement amount. For my voice prosthesis and hands free speech supplies the average reimbursement has been forty percent of my out of pocket cost. The icing on the cake came in October 2010 when Medicare would no longer reimburse for the cost of an indwelling voice prosthesis that was purchased by the patient. My speech pathologist and her hospital would not absorb the sixty percent out of pocket cost that Medicare was imposing on the purchaser. As a result, I had to purchase it myself with complete out of pocket cost and no reimbursement. I was fortunate, in that I was able to extend my prosthesis life to a full year and was financially able to cover the $300 plus cost.
C. Well, I guess I'm one of the fortunate ones after becoming a Lary. I do have Medicare and private insurance through my company’s retirement plan. I'm fortunate in the sense that I'm a veteran and use the VA for all my SLP needs and supplies. One of the reasons I signed up with the VA was because Medicare made the changes on how they would pay for valves and supplies. If I need any medical help with my puncture or stoma I'll see my Dr. at Stanford and be covered by Medicare and private insurance.
D. In Ireland laryngectomees are given a medical card which means that all medical care and supplies are provided by the state. You order supplies through a local health care office and all are free e.g. trachea tubes, bibs, saline and sterile water, feeding tubes, syringes, wipes and all the supplies needed for TEP.
E. On the subject of supplies Atos does take Medicare assignment on the new HMEs the Xtra flow and Xtra moist. Without a supplement insurance they cost you $16 and they do require prescription. Ordered direct from Atos, Lary tubes are not an assignment item and you have to pay up front and wait for Medicare to reimburse you. Tough when money is tight!
F. For so many years I have had my TEPs replaced by a SLP at a major hospital wherein the individual cost of the TEP was included in the overall hospital charge. When I went to a local hospital, I was advised the patient has to order the TEP and have it delivered since the hospital does not get the
full reimbursement of the cost of the TEP from Medicare, and is unwilling to absorb the cost. Upon ordering the TEP, I was advised by ATOS/InHealth that Medicare does not allow them to bill Medicare directly but it has to be the billed by the practitioner. What a "Catch 22.", The company cannot bill and the one who is supposed to bill won't because they don't get paid the full amount. So a patient who has a medical item which is Medicare reimbursable cannot be reimbursed due to what - a bureaucratic snafu and hospital greed.
Thank you for your submissions. Edits are used for length, clarity and to keep comments on subject of the month.
Staff of Speaking Out
The Comfort of Cold Porridge.
I’ve been staying in a little meditation centre in Wales for the past month. Our life here is very simple – no TV, no internet, no movies, we don’t even chat to one another. Boring? Very rarely in fact. We’re practicing mindfulness, which means letting each moment be a revelation. And, as I discovered one morning, even cold porridge has its wisdom to impart! Here’s my attempt to describe the moment-to-moment experience:
I sense my right hand lifting the spoon towards my mouth, my head bowing to meet it, then my mouth opening to let warm, velvety porridge pour onto my tongue. My back straightens, right arm lowers itself down to the table. A smile settles into my face as I relax and enjoy the first spoonful of porridge. Savouring a raisin I am struck by the contrast between its soft juiciness and the hard sharpness of my teeth tearing into its flesh, destroying it. My mind links this to a memory of some TV footage: an old bull being eaten by lions. The bull moaning, roaring, the lions feasting. My sympathies were all for the bull when I watched the TV program, but now, although I sense the vulnerability of the raisin, my tongue demands its sweetness and my teeth tear into it without mercy. I recognise that, if driven by hunger, I too could become a predator. Revulsion follows, not wanting any part in the savage undertones to my nature, and pinching, bitter sensations fill my head and chest.
Although I’m writhing inwardly, I notice that the fairly neutral sensations of porridge feel much, much nicer than the bitterness in my own flesh. I feel somewhat humiliated that the taste of porridge (by now it’s even cold) can divert my attention from the dilemma of life’s suffering. In dismay I try to resist the comfort of cold porridge, but I don’t seem to be in charge of this show! After another few spoons there is only gratitude for the transient nature of all experience which brings even the deepest suffering to an end. I dedicate all my powers of goodwill to the welfare of the dying bull and other suffering beings.
Now the bowl is almost empty, and I have become bored with breakfast, wanting to fast-forward to the next activity. My mind is doing its best to recede from the present moment. I also notice however that the porridge, though cold, feels just as velvety as at the first spoonful, the raisins taste just as sweet. It’s only my attachment which is dying away. This gives me a foretaste of my own death, and the knowledge that everything except me will survive this unscathed. I shiver with fear and excitement at my growing acquaintance with a consciousness which does not mourn my passing. The image of the dying bull comes back again, and I wish that he may find peace. What good this wish will do him, I don’t know, but I feel grateful to him for inspiring me to try.
Perhaps it’s the other way around … I can’t help him, but he is helping me?
After breakfast, washing the bowl and spoon, the mood changes to appreciation for warm water, the colours of suds and hands and sleeves and bowl and sink, the gentle movements of lifting and rubbing. I am relieved at the mood change, but sense something missing, something being held back, dammed up. For a moment I’m puzzled but then the dam busts and goodwill quietly floods the scene, filling each nook and crevice of this experience we call ‘washing the dishes’. Another smile settles on my face and I am thankful again for this meditation practice which has no favourites, finding each experience equally worthy of attention.
And so the day evolves from moment to moment, each self-made drama succumbing to the simple abundance of the present moment. Just this is enough I hear myself say, feeling the softness of the dish-cloth, the weight of the bowl, a sigh of contentment. Just this is enough.
THE SPRING FANFARE
By Len A.Hynds
The rising sun, smiles on all today,
My daffodils turn and begin to play,
blowing their trumpets so silent and clear,
so that all the fairy folk can hear.
Tossing their heads in the gentle breeze,
spreading their arms with carefree ease.
Wiggling their toes, beneath the ground,
avoiding those stones which always are found.
Telling other flowers, “It’s not so bad,
now spring is here, you should be glad.”
Their flash of yellow covers the earth,
giving crocus, narcissus such joy and mirth.
Trumpeting, “You should feel quite glad and gay,
this dawning of a new spring day.”
Len A. Hynds
New Phones, Windows 10 and New Controversy Galore
In just a few months we have been bombarded with new products and reinventions of others. We now have iPhone 6 and 6+, Galaxy 5S, Galaxy Edge and Note 4, consumer quality drones, 4K TV sets that no one can afford and that has no programming yet, You Tube preparing to launch a Netflix killer...and blah blah blah.
I wrote the preceding paragraph 11 months ago and here we are now on the threshold of Apple's i Phone 7, Samsung's Galaxy 7s & Note 7 and having a drone in your neighborhood is leading to lawsuits and calls for restraints on those who would invade our privacy. The 4K TV market has come much closer to being affordable for the average household in the very near future.
What we consumers have done is created a brand new marketplace by demanding the latest and greatest the technology companies can produce (which they didn't know they could).
We now have our once sacred durable goods, electronics, becoming consumables. We find ourselves "upgrading" our phones to a newer model, not because the old one is defective, just because a newer model has been introduced. Of course the mass feeding frenzy we have created has led to lower and lower prices, which just happens to further increase the frenzy. You just have to love the power of consumerism.
To further encourage us to upgrade our hardware the industry fans the flames by developing new and in many ways "improved" ways of using our hardware. Enter Windows 10...to use your computers and phones at a more personal level we now have touchscreen technology to enhance and expand our use of our hardware gadgets.
Windows 10 has been in use now since October of last year, 6 months and over 100 million devices running it. Microsoft released build 14267 (Codename Redstone) this month to introduce new features and to fix software bugs. Most of you will be yawning by now so let me get on with why you may need to be aware of these things.
If you are a Windows 10 user or still waiting to be one, the effects of the release cycles Microsoft is using is in place of what it once had as new versions of Windows. Hence you will be finding your system getting more updates than in the past, but of much more significant importance.
Apple has taken a similar approach with a sale by subscription service.You no longer need to worry about standing in line for hours on end each time a new iPhone is brought to market. In order to ensure your place in line you can new sign up for an annual "new " iphone and you will recieve your new iPhone approximately 2 days before they are available at the Apple Store.
In the meantime Apple is getting into the arena of "my Daddy can beat your Daddy" AKA: Pissing contest with the FBI. Apple should have learned by now that in our new norm of Homeland Security, if it's not illegal today, just wait till tomorrow and we'll create a new law to make it illegal. This is perhaps a classic example of a U.S. citizen having a right to protection under the law in the realm of search and seizure; probably a lot of others as well. I am no fan of the FBI or of Apple, but I would risk saying that a dead terrorist has not done his/her share to claim the right to such protection under our laws.
This is certainly an interesting jump off point for a forum debate...not a political one but rather just what we as U.S. citizens should expect from the Constitution.
Online security and personal information theft have been increasing issues for all users and it seems we all need to relook at our online habits. Just a reminder to always be wary of online scams and use caution and common sense while online. Our own diligence is the best anti malware we can use and the most economical. If you receive emails asking for you personal info be absolutely certain who is asking before giving out any details. I have even called companies and questioned them as to why they wanted my info and to ensure that the email was actually from them.
Recent investigations has uncovered some not so obvious terms from Lifelock...the company that says it protects your identity. Again Bob Rankin provides us with more background on the situation with Lifelock..
For those who enjoy the Facebook experience this article has some good tips to help maintain your privacy and security
Have you upgraded to Windows 10? If you have why not share your thoughts on Windows in the Webwhispers Forum or in the Facebook group? We can all share experiences and learn from one another.
To answer some common questions Dave's Tips has put out a few items to help us adjust..
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