March 2007

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Library - Tammy Wigginton News & Events
News Views Pat Sanders Membership Info-Database News & Events
News Views Pat Sanders What About The WW Forum News & Events
Voice Points Tonya R. Jones, MS, CCC-SLP Know And Set Your Own Limits Education-Med
From The Farm Bruce "Buck" Martin How I Got Here - Pt1 Experiences
A Scottish Accent Rosalie Macrae Lary Charivari Experiences
Vicki's Midnight Train Vicki Eorio Change, How Painful Is It Experiences
Worth Every Penny Lanny Keithley The Human Computer How To
Practically Speaking Elizabeth Finchem A Soft PlaceTo Land Experiences
Between Friends Donna McGary SS Disability Benefits - Pt 1 Experiences
New Members Listing Welcome News & Events

 

 

 

 

Good News for the Web Site!

 

 

We are delighted to announce that our long time SLP member, Tammy Wigginton, has volunteered to work with us as our WW Library Advisor. She is analyzing the entire library for what we need and has suggested some small amount of rearranging to make it easier to use. She has noted where updating is needed and will proceed to take care of this as time allows. Our response is, "Thanks! Have at it and let us know when you have sections ready to put on the web." Our Library already has information that is difficult to find elsewhere and it is just going to be bigger and better as we proceed with the update.

 

Tammy can be reached at: Tammy L. Wigginton; M.S., CCC/SLP
 

Our Database keeps your Membership Information. Is it correct?

 

We have a slight but ongoing problem with some of the information you send in your original application. Let's take an ordinary application for a brand new laryngectomee who wants to join us. She, Jane Doe, may be recovering and her husband, John Doe, looks on the computer and finds WebWhispers. He fills out the application in his name and marks "caregiver" and while he gives us Jane's date of birth and date of surgery, HE is the one who is entered as a member. Since they both use the same email address, it doesn't seem to make a difference so they never bother to file another application or even to mark on the application that they both want to be members at the same address, email, telephone, etc. Jane gets left out in more ways than one and we miss out on sharing information.

 

Our database gives an alpha list of all members. John Doe goes on that as caregiver. We have another online roster, with just patients listed, that is filed by the area in which they live. John doesn't go on this because he is a caregiver. Jane doesn't go on it because she is not a member. This is used by new members to find if there are any laryngectomees in their area. It may be used by long-term members to send an email invitation for the registered laryngectomee to attend the club in that area. If a message comes into the list from the Doe family email address asking a question, our member can give a better answer if Jane is listed along with her statistics, Those tell where she lives, what kind of voice she uses, when her surgery took place and how old she is, all of which can make a difference in how we answer. Those are left off because her husband is the only member.

 

In addition, we have a scholarship plan for the Voice Institute. It is available only to laryngectomee members. To be able to attend the IAL Annual Meeting as a WW member, to act as a delegate for us, to ever run for office, Jane needs to be listed as a member with us. There are other benefits in having the laryngectomee be a member.

 

Please check your listings in the Members Area of the web site on the Membership Roster and, if you are a laryngectomee, on the By Location listing. Fill in an Update Application on our website, upper right, and write an explanation in comments if you need to make changes.

 

 

What about the WW Forum?

 

Have had a few people ask, "Can I write about this in the forum? Most likely the answer is yes.

 

You can talk about cooking, parties, smoking, drinking, trips, dates, pets, hobbies, books, doctors or treatments. You can criticize, praise, question, bitch, ask and answer. This is what makes the forum so much fun. You can talk about serious things, pray, curse (only a little), play games, go to the chat room. It is as open as can be and you can write as much and as often as you want, when you want. We have a lot of people who never write but come in and read every day. We need more writers to give them some fun stuff to read or to learn from.

 

We do not allow flaming because that is hurtful. A joke that is so far over the line that some people are embarrassed will be removed because we don't want a new member to come in and see that first...then think, is that what these people are about? I don't want to be a part of this.

 

This is our clubhouse and it is appropriate to walk up to any table and say Hi. (That means you can answer any thread (discussion), the more the merrier).

 

Since we can do any or all of these things on the forum, it helps us to keep the list (which goes into your mailbox daily) manageably sized and with appropriate subjects.

 

You won't have a problem with what goes in the forum and on the list. You may play poker on Saturday night and go to Church on Sunday but you don't get those mixed up, although I have seen some praying at poker games!! Come to think of it, I have seen some playing in church (but you don't hear the cards being shuffled!)

 

Help us keep it going well and interesting to others… write about lots of things and start new threads in appropriate sections so there are lots of subjects for people to choose from. It's fun.
 

 

My best to all,

 
Pat W Sanders
WebWhispers President
 

 

 

 VoicePoints     [© 2007 Lisa Proper]
Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S ( proper.lisa@mayo.edu )

 

 

Know and Set Your Own Limits!

Tonya R. Jones, MS, CCC-SLP, Mayo Clinic Jacksonville

 

 

This article was prompted by the following true scenario:

A laryngectomee, who utilizes an indwelling tracheoesophageal voice prosthesis for speech, was taken to the hospital secondary to complications following a fall. While in the hospital, he experienced coughing during drinking which was a probable indication that his voice prosthesis needed to be changed. The patient and his wife were “pros” at determining when this was needed. Subsequently, a consultation with the acute care speech pathology department was requested. A zealous speech pathologist with limited experience in working with laryngectomees, responded to the consultation request.

Given her limited experience, she sought the assistance of the patient's ENT doctor, who recommended that the voice prosthesis either be “plugged” or that the patient drink thickened liquids to prevent leakage until he was discharged from the hospital. Despite these recommendations, the decision was made to change the voice prosthesis. The old prosthesis was removed without having any type of stent available should a problem arise. This particular voice prosthesis was not the same as those the SLP had mentioned as her limited experience in changing. Not only was the voice prosthesis itself different, but the loading and insertion methods were also different.

Following several unsuccessful attempts at loading and inserting the prosthesis, the SLP contacted me and asked for assistance over the phone. It was later discovered that the therapist had only “observed” a prosthesis change rather than had a hands-on experience in changing one herself. Because I was contacted, once the old prosthesis was removed, I encouraged her to stent the tract with either a red rubber catheter or TEP dilator while I reviewed the loading instructions with her. She was unaware of why stenting was required and was also unaware of appropriate sizes of a red rubber catheter to be used. Following brief education regarding stenting, a red rubber catheter was eventually placed into the tract leaving the patient with the option of writing for communication purposes nevertheless, the patient was stabilized in that no leakage occurred that could contribute to aspiration of liquids. The following day the patient had to be transported via ambulance to an outpatient clinic to have his voice prosthesis inserted by an experienced speech pathologist.


This is just one of several scenarios we hear from patients about visiting facilities where speech-language pathologists (SLP) have limited knowledge of laryngectomees who utilize TE voice prostheses as their method of communication.

Imagine how frightening it is for a speech pathologist to see a patient on his/her caseload when they have either no or limited experience with this problem. Then imagine how much more frightening it is for patients to put their trust in a health care system, whose mission statement is to “Do what’s right for the patient”, only to leave the facility in worse shape than when they came.

Exactly, what is “right for the patient”? Is it a medical professional “pretending to know” in order to appear proficient? Is it taking matters into your own hands and putting the patient at risk? Is it acquiring formal training in an area so you are ready when the need arises or is it simply having a contingency plan in place to assist with continuity of care? We must also ask, “How much experience or knowledge is enough in order to treat these patients? These questions may seem rhetorical. However, based on the preceding scenario, these questions must be addressed.

When treating patients with TEP we must realize there is more involved than just “popping in” a prosthesis. The success of the patient communicating effectively, relies heavily on both the knowledge and the experience of the SLP. The SLP should
1) be aware of various prosthesis features,
2) have knowledge and experience regarding different insertion methods,
3) be able to accurately assess seating protocols.

These are general guidelines and for the purpose of this review these guidelines will addressed with the question in mind “Should I change that TEP?”

Before making that decision, the SLP should first determine if he/she has the knowledge and training to even consider changing a voice prosthesis. Once this is affirmed, then one must determine what type of prosthesis needs changing, as there are several to choose from. At any given facility, one type of voice prosthesis may be used more than others, based on ENT preference or SLP experience. However, other prostheses are available. Some prosthesis features include, but are not limited to, different sizes (length and diameter), shapes, resistance levels, and composition. Since some prostheses are longer in length or wider in diameter than others, it is important to know these figures. You will need them should you choose to place a stent (red rubber catheter or TE dilator) into the TE fistula prior to replacing the voice prosthesis or possibly if changing to a completely different type of prosthesis. Shape varies in that some have a flat esophageal retention collar versus a “hooded” retention collar. Resistance levels affect ease of communication and composition entails the material the prosthesis is made of (silicone, yeast resistant materials, etc.).

Of course with various prostheses come various insertion methods. Having only observed the insertion of a voice prosthesis is simply not enough. No one would want a health care professional performing any type of surgical or invasive procedure that he/she has only observed. “Hands on” experience is not only "golden", but is an absolute must. One can also seek the direct supervision or assistance of a trained professional until confidence is where it needs to be in order to perform these procedures.

Following the determination of prosthesis type and insertion method, one must develop the ability to assess seating protocols. Seating protocols test whether or not the voice prosthesis was properly placed. Once inserted, you should be able to achieve a full rotation of the voice prosthesis without a “coiling” effect with the inserter strap. Secondly, determine if the voice prosthesis is snug in the fistula tract. This can be confirmed by slightly pulling on the inserter stick prior to removing the loading device. Other clinical signs of proper seating include adequate voicing as well as no leaking upon drinking single or multiple liquid swallows.

In addition to the question of “Should I change that TEP”?, we can also ask
“Do I know how to measure fistula length”?,
“What do I know about stents”?,
“What if topical anesthesia is required?” and
“Do I know enough about testing procedures to identify prosthesis success or failure?”. These questions can only be answered if either formal training was obtained or direct supervision was provided. If the questions can not be answered denoting knowledge and experience, then having a plan in place to stabilize patients until they can be treated by an experienced SLP should be the goal of the facility and their personnel.

The information presented here is only a sample of the information needed for successful service delivery to an individual with a TEP. Formal training in this highly specialized area of Speech/Language Pathology may not always be justifiable in a facility where this population makes up a very small percentage of the caseload. However, SLPs should “know their limits” and ultimately “Do what’s Right for the Patient”. In many cases that may mean, “Do NOT treat the patient”. Knowing and, even more importantly, accepting your limitations, is an attribute of a good health care provider no matter the profession.

Most Speech Pathologists do what is best for their patients and this scenario is not the norm. However, because a few Speech Pathologists may choose to treat a patient with a TEP, when maybe they shouldn't have, I hope to make these SLPs aware that no treatment may be the best treatment option on occasion.

Additionally, it should be the goal of all SLPs, who treat patients with TEPs, to educate their patients to know when to accept treatment and from whom.

 

 

 

 

 

 

Let Me Tell You How I Got Here…

Part One

Bruce "Buck" Martin

 

 

In 1985, while living and working in Turkey I received a phone call from my mother telling me that a tornado had come screaming across the pastoral hillsides of my childhood home in Northwestern Pennsylvania, and caused an incredible amount of devastation. The tornado stayed on the ground for an unusually long period of time and left a swath of death and destruction, some of which can still be viewed to this day. Up the road about 2 miles from Kennard, PA. stood the small village of Atlantic.
 
I was raised in Kennard. It’s a tiny little place along the railroad tracks, surrounded by small family farms, mostly owned and worked by Amish folks. It was a “Mayberry RFD” kind of place, complete with a general store with the Post Office inside.
 
Our mail was delivered by the passenger train everyday. It would come thru the town and at the crossing a man would kick a big canvas bag out of a door on the mail car. Down the tracks a hundred yards or so there was a platform with steps leading up to it. Attached to the platform was a swinging steel arm. Everyday the owner of the store, who also served as the postmaster would take the outbound mail in a big canvas bag and hang it from the steel arm. When the train passed the platform the man inside the mail car would extend another steel hook from the car and snatch the outbound mailbag. During the summer when we didn’t have school, it was a real thrill to sit on the front porch of the general store and wait for the passenger train to come and kick the mail bag out onto the dirt road at the crossing. We would run down to the crossing and drag the mail bag up to the store. “Big stuff” for little kids! Mr. Stevenson, the postmaster would sort the mail and put it in the little individual mail windows inside the store. They were brass, with a glass window and beautiful hand painted red and gold letters, and a little brass combination lock on each box. Our number was, “Box 73, Kennard, PA”.
 
Atlantic was pretty much a mirror image of Kennard only somewhat larger. It had a feed mill, and a much bigger and well provisioned general store with a post-office. The distance to Atlantic from Kennard was two and a half miles, and it was all uphill. The huge, long freight trains loaded with coal would come north thru Kennard on their way to the terminus at Lake Erie. They would creep along, groaning under the weight of their burden. We thought it grand fun to hop the train, ride to Atlantic and buy candy and things at the “big” store. Needless to say coming home was a different story. We walked. The trains coming south were really “smokin’” on down the tracks. I digress………

When the tornado had disappeared and the deathly silence returned there were two houses left standing in Atlantic. Kennard had been spared. The rescue workers began flooding in, the Amish came from far and wide to help their brethren start the process of clean up and rebuilding, and of course the media came flocking in to record the stories and document the devastation. Living in Turkey with no internet, and no 24 hour news channel, I was reduced to receiving news and updates of this event via phone calls and newspaper articles mailed to me by family and friends.

One account relayed to me by my mother was particularly poignant. A pair of shoes had been found. They were sitting in the middle of the 2 lane country road that runs south from Atlantic to Kennard. The shoes were hand-made Amish shoes, and of a size that would fit a grown man. They sat there in the middle of the road in mid-stride as if someone had placed them there purposefully. The owner of the shoes, a young Amish man in his twenties was later found dead 30 feet up in a tree nearly a half mile distant.

On October 25th, 2006 as I left the ENT’s office, I could see in my mind’s eye a funnel cloud touching down and headed my way. “You have a tumor on your right vocal cord that hasn’t been there in previous exams.”, the ENT said. Closer and closer it came, roaring ever louder, as the Nov. 2nd biopsy came and went. The mayhem increased and the roar reached deafening levels on Nov. 13th when my ENT said, “You have cancer of the right vocal cord.” The tornado hit me and sucked me straight out of my shoes. It twisted and turned and spun me into a world that I could not even imagine a few short weeks earlier. I can still see those shoes sitting down there. I am working my way back towards them, and hope before long to be able to walk over there and put them back on. They will no doubt fit differently from weathering this storm, and will no longer be suitable for the path I was walking back then, but I think I can probably get used to them and find a really fine new path to tread.

To be continued…

 

 

 

 

 

 

LARY CHARIVARI

by Rosalie Macrae

 

I had decided to call my column 'Lary Charivari' this month, as it rhymed, looked quite distinguished, and 'charivari' meant gossip. I thought. Then I looked it up. A Freudian error. Apparently it was a noisy mock serenade in rural France to force cohabiting, unmarried couples to wed, sharpish, before they shamed the community. And in godly parts of North America they still call it a 'shivaree'. People in masks who probably think they are pillars of the community, bang metal implements outside the windows of the shameless pair in the middle of the night. And if you are a widow contemplating marriage before you have done enough mourning you get the same treatment. I'd be interested to hear from any shivaree-ers and I promise my lips are sealed.

However in parts of Europe it means 'shiny'. Much more pleasant. In the Alps they even have a radio station called 'Charivari' which makes lots of noise on top of an alp I suppose if you are lost. The happenings I write about are as pleasant as possible although it would be presuming on your intelligence and living in cloud cuckoo land to pretend that the contradictory upsy-downsy life of the laryngectomee is always agreeable.

Anyway this is a great place to be, as Jessica Lange said to me last week at the Selfridges Valentine chocolate counter. Good throw-away line that. I had just bought a little box of chocolates , very chic with brown silk bands on it, for AMIK (A Man I Know) when this melodious female voice said to me that she just loved that stripey little number and was going to get one in a larger size.

No, she was not referring to the pretty rainbow scarf I purchased from WW moderator a couple of Christmases ago, Sorry, Barb. And it looked so boho with my grey flannel coat. I expect she admired that too, though. Anyway, I recognised this luminous beauty immediately. Ms Lange is appearing in The Glass Menagerie at the Apollo Theatre in London for a few weeks. We'd passed the theatre on the way to pick up our tickets for the Sound of Music and I'd wished silently that I were going there instead. But didn't want to spoil things for my three granddaughters, all dressed up for their delayed Christmas treat.

Tennessee Williams who wrote it as you know, died, poor man, of choking on the stopper of his eye drop bottle. And someone I read about used superglue drops in his eyes by mistake, the tubes being virtually identical, especially when you need eyedrops.

I said to Jessica that she could hand the Swiss chocolates round to the cast. She understood my EL immediately , admired my use of it, and said she was going to keep the box afterwards to put, well, things in, didn't I know. I agreed and said you couldn't get into my house for boxes for things.

That was pleasant. In fact it was that kind of day. I turned tround to tell the girls who Jessica Lange was but they were in a trance . The leader of Franz Ferdinand was at the counter ,buying a red sugar rose on a long
green marzipan stem--uh huh. I'd just about heard of them--and told 17-year-old Georgia, the biggest grand daughter who looks like a young Bree in Des Hou that she was a pretty girl. They were all clutching their throats in ecstasy and I wanted to change my HME discreetly,so off we went in a howling gale to the New World Chinese place in Soho, which is renowned for its wonderful dim sums , reasonable prices ,
and exceptionally unfriendly waitresses.

Thank goodness I had posted a booking, snail mail. No website , a good sign of authenticity for starters. A large black-haired dolly in a grey Mao tunic spread her arms across the entrance , all gilt curlicues and
dragons,and said no no no no ,fullupfullupfullup. The girls, country bumpkinesses more used to being leered at by lads with straw hanging out of their hats than being victims of aggression, shrank back into the Force 10.

Granny was not having it though. I waved my Servox in the air with mugwumpian authority and said a table for four was booked for Macrae, And Party. She stopped, stared, listened , said "Aaaaaah" . I had explained in the letter about The Voice and the really special noodles it needed, and we were ushered through to the gaudiest, greatest dim sum place in the world we decided later.

The head waitress told me her uncle was like me. She trilled to the other waitresses that it was too many cigarettes and they all laughed and clapped their hands. Telling them that dodgy throats were in my genes would have been too complicated so I allowed them to treat me delightedly as a Fag-Ash-Lil whose past had caught up.

Never were dumplings so light, beans greener or monosodium more glutamated. The head waitress never left my side. One sip of green tea and the cup was replenished from on high, in a delicate steaming spray above my butterfly hairpinned head. When I spoke they all hushed at the nearby tables, crammed in early celebrations of the Chinese NewYear. and when we left were each presented with a pair of ivory chopsticks.
Long life to honourable uncle who had made it so special.
Oh yes. The Sound of Music was pretty special too.
 

 

 

 

 

 

 

CHANGE, HOW PAINFUL IS IT?

 
 
You say, Oh Vicki, how silly can you be? Change is having cancer and losing your voice and losing relationships and perhaps employment and maybe self esteem and having your life turned upside down. What a dumb subject!”

 

Perhaps you are correct. It is a dumb topic. However I would like to discuss the changes over which we have no control and acceptance of changes that are active choices based on whatever. But most importantly, how we either react or rebel or accept or deny.

 

When I was very small, because my father was in the service, I was primarily raised by my grandmother and my maiden aunt (remember that phrase: maiden aunt? Isn’t it great and didn’t most of us have one”). It was a loving household, all female with all of the special caring traits of women were showered on me.

 

Then this huge, loud man came home shortly afterwards a son was born. What a change! I did feel loved but I did not feel “special” anymore. And I had competition for attention and approval. Someone in the house cuter than me? I don’t think so!

 

But what could I do? Couldn’t run away, no place to go and I was afraid they would not miss me because HE was so CUTE. So at the tender age of four, I learned albeit painfully, change happens and darn if I could make things go back the way they were.

 

I took another look at this so CUTE baby and decided he was not a threat. He couldn’t do anything I could do! I decided to learn new things that would only be mine. Like playing the piano and canasta with my grandmother (even though I knew she let me win). Well, HE couldn’t do any of those things and I could. Best accept him because the attention I was now getting was very different. It was much better than cooing and patting. I was sitting in laps of grownups on the piano bench and in the front room (reserved only for grown ups) being read to and learning to pick out the words myself.

 

Life continued to change. More CUTE babies, like three more. We moved from GI cracker box housing to the next upgrade and the next one and the next one. I learned to work at the local hospital long before it was acceptable to hire such young folks because financial hardships were upon us. If I wanted spending money, I had to work plus I was able to make small contributions to the household. Because of that change in our family finances, learned I loved the hospital, something that stayed with me until I realized my dream of becoming a nurse.

 

The change in my father working locally to being a traveling salesman had significant changes in our home. We lost the home we all loved, moved to another neighborhood which meant I left the tree in the back yard where I climbed up to read and could not be seen by anyone. The loss of that tree and all it represented was worse than adjusting to a new neighborhood.

 

I learned to cook because with 5 kids, Dad on the road, and my mother turning to liquid refreshment for comfort, someone had to do it. Another change that had to be dealt with the best way given what was happening.

 

As I grew up and really, really wanted to have fun and escape for awhile, I learned that before I could date, I had to meet such stringent rules as to make me believe I would never have a date. Rules that could not be changed under any circumstances. No control there! I heard from my aunt and grandmother, since they had to meet each young man, that if the young man had a weak chin, he will not amount to anything and if his eyes are too close together, he can not be trusted. Wow! Those pronouncements were pretty scary.

 

More changes... I learned that my beloved maiden aunt and grandmother died and I could not change that but I could keep them in my memories and my heart and even pray to them.

 

Changes of course continued and probably 99% of them were changes I had no control over. The only thing I could control was my reaction to them and my choice to adjust to them. Oh there were times when I rebelled! No way was I or am I a master of acceptance of change!

 

One time when I rebelled (and I hope some of you are Catholic so you can appreciate the courage this took), I had graduated from nursing school, had an apartment, and thought I was all grown up. Having gone to a Catholic grade school, high school, and college, and having uncles who were priest, well, let’s just say I was pretty well indoctrinated in the rules.
 
One Sunday I decided not to go to Church. Oh my God! Never, never had I missed Mass on Sunday! But this Sunday I decided to try to change my fear of what I had always been told “You shall die!”. All day I huddled in a chair in my little cheesy apartment waiting for the punishment that I was sure I deserved.

 

The hours ticked by, I missed my last opportunity to run to the Church to attend services. I still didn’t move, waiting for a tornado, the floor of the apartment to collapse, lightening to strike, or some other act of God to be directed to me.

 

Finally after about 7:30 PM I got up. I was so surprised I was alive! I was in one piece! I had no injuries! The apartment was in one piece! Of course I was not yet sure all was well with God and me but at least for the time being we seemed to be ok.

 

What was more significant than my actively deciding not to go to Church that day was that it was one of the first times in my life I made an active decision to chance things, to decide how and when I would communicate with my God. I took control for me. A very dramatic change in how I dealt with my faith.

 

Change is just plain terrifying. Life changes, most can not be avoided. Changes have the potential to bring you to your knees. It makes no difference if it is a child testing the system or an adult expressing anger about changes in the routine that gives them comfort because it is predictable.

 

However, how do you grow and test yourself and challenge yourself? If changes in the look of the newspaper or the neighbor’s landscape or your children moving or getting a new neighbor after years of interacting with someone else or a change in your health that might not be related to being a lary or your mate taking up a hobby that does not include you upset you, this may be rude, but I have to suggest as the kids say, “get a life”.

 

The newspaper change bothers you? Discontinue it. The neighbor does new planting? How beautiful! Enjoy! Share and ask for help. It will enhance your curbside look. A new neighbor? How interesting! What else did you have to discuss with the old one? The new one has experiences and opinions that should be stimulating to you. Your kids moving? Very, very painful but when you visit, will it not be to new places with new things to see? Your health status has changed? Attack it, get advice, change your diet or whatever it takes. Your spouse has a hobby that excludes you? Why? Were you too rigid or did you ignore their request for change.

 

It is too easy to blame everything on our becoming larys. My husband has a theory that I agree with: after a tremendous life changing event such as cancer, you don’t become a different person, you become more of what you were. So if your tolerance for animals was marginal, now it will not exist (they have dander, they jump on me, they are not controllable) and if your tolerance for change, the type of change you can not control, you will be upset, angry, and come close to making yourself sick. That is the last thing I want to happen to you.

 

This is the end of my “pop psychology”. With the exception that as tough as change is, especially those changes that are life changing, or as small as your ability to accept changes in familiar things, change can not be avoided. It is much easier to accept them and allow yourself to see if you choose to allow them to affect/diminish you or open your eyes to see a hidden jewel of an opportunity.
 
Vicki

 

 

 

 

 

 

The Human Computer…

by Lanny Keithley

 

 


Last month, my first article entitled “The Thought Police” started out as a response to some comments made, in WebWhispers, by people that were in the process of locking themselves in their own small prisons, by their fear and worry. Pat caught my response and, after some discussion, we turned my little rant into a longer monthly series of observations and perspectives on dealing with life and all the joys, problems and opportunities if offers…


The first part of this process is not the ‘Policing’ or management of your thoughts. You first need to consider how the human mind works and how it controls all that you do - how those thoughts are created, what happens to them, and how they are used to manage every daily moment and event.


I am no doctor, have no formal advanced education, or credentials that legally entitle me to teach any of these concepts – so as the disclaimer, or heading, reads “Worth Every Penny You Paid for It – And More”.


I am a student of me first, and then life, and how it all works. I have spent over 30 years in the computer industry, and about 45 of my 60 years working on trying to figure out how I work, and how to ‘understand’ and ‘manage’ me and all my challenges.


Back when I started learning about computers, they didn’t make any sense to me. Then, at some point, like a light turning on, I understood them and it all made sense to me. At the same time in my life, I was going through all sorts of personal growth, oriented and discovery exploration. As I was learning how to manage, or program, computers to do the things I wanted them to do, I realized how much the logic and basic concepts of how the computers worked, was also how I worked.


I realized that the designers and creators of the ‘modern’ computer were actually emulating themselves, how they thought, and their own logic processes in their designs and mechanical creations.


I can hear the screech – "This is way too much for me…”, but you have already come this far, so read a little further before you start tearing out this ‘page’ from your opportunities in life. You don’t have to be a computer expert to understand these concepts, or even know how they work. But, now that lots of folks have a basic understanding of computers, it provides an opportunity to use that knowledge to understand ourselves, and them, better – sort of a full circle of understanding, if you will…


In the first article, ‘The Thought Police’, I described one aspect of how to manage this wonderful tool, but didn’t get into 'how' it all works. I didn't provide enough information to fully understand it. To get better use and control out of it, you need to know more about it and how it functions. This article will attempt to provide that understanding, so we can learn more about how to help us deal with the challenges of daily life.


The Human Computer you have between your ears, has more power and capability than the largest super computer that exists today, or will for many years or decades to come. I can hear the “There he goes again…” thoughts - Well, hear me out…


If I say the word ‘Corvette’ (but any other term or concept will do), by the instant you have read that word, your ‘Human Computer’ has already scanned every moment in your life, for every reference to that word/concept, and all related associations of that word/concept to you, has loaded all the good stuff into the ‘Good’ bucket, and all the bad stuff into the ‘Bad’ bucket on that Human Computer balance scale we talked about in the first article, and has provided you with an answer of whether that is good or bad for you. And, being a balance scale, the answers are weighted from really bad to really good based on the volume of each bucket’s contents. I defy any computer that exist, or is even being contemplated today, to do that with that much data. So, now you ask, how much data are we talking about?


When I said ‘scanned every moment of your life’, I am referring to every aspect of every moment – every smell, sight, feeling, thought, touch, sound, etc., etc. I am not sure how much storage a smell or feeling or touch, or whatever take in terms of the amount of storage, but in today’s terms, a single moment could potentially fill up a very large hard disk – and think of how many ‘moments’ you have been through in your life. And, if you did have all that data, how would you ever process it?


Consider going into a library and doing that research work on that one word – through all the books in the library – and that is just the simple basic textual part of the task your mind goes through in a fraction of a second – thousands of times a day… How many times is the word printed in all those books, how would you find them all, and what about all the events and concepts it was involved in to be considered as being good or bad for only you?


I am going through this just to give you a peek at the concept of how large and powerful YOUR Human Computer is, and what capabilities it can provide when used and understood correctly.


Well, now we can begin pondering what to do with this awesome beast of a ‘computer’ we have at our beck and call… It is already pre-loaded with every aspect of our unique life experience and a LOT more, and is ready to be used at any moment. And, it will provide the correct answer to you every time it is used. It will never lie to you. Based upon the information it has stored in its memory, it will answer every question or query you give it - accurately and correctly. The key is knowing how to use it correctly to get accurate results.


So, if you got a brain between your ears – just a little humor there – you are probably thinking, ‘Wow, and so what now?’


The usual ‘operator’ of your computer is what is called your consciousness, or what you consider to be YOU - your ‘me’ or ‘I’, if you will. It processes all the moments of your life as they occur. It deals in concepts and thoughts – what should I do now?, how would I do this?, what color do I want?, how long will that take?, do they have those shoes in my size?, stuff like that… And, it is constantly using your computer, in the background, aka sub-consciousness, to provide all the answers, to all the questions, that come up with when dealing with these moments or events . Whether they are really happening ‘live’ events (digging a hole), or imaginary thought created events (thinking about digging a hole) that are generated by pondering possibilities, or reliving old, previously stored events or programs.


As I mentioned in “The Thought Police”, as all of these events, or moments, are processed, the results are stored for future reference in your computer memory. So, the next time you ponder ‘How long will it take to get to Joe’s house?’, all of the prior times you went to Joe’s house will be brought up and considered as part of making up the current answer to your question. This time you may have a different starting point, or other considerations, but all such information is processed and stored for future references. This saves time and is part of the very efficient design of the human thought process.


This can be very good news or very bad news to you in daily life, depending on what your focus is. And, here is where the ‘Power of Thinking’ comes into play – whether ‘Positive’ and good, or ‘Negative’ and bad, to your daily life. As you ponder an event over and over, more and more of these previously considered thought processes are developed and used in answering all future ones. The more robust the past number and focus of previous answers to any given question or issue are, the less your consciousness will try and consider the reality of the current situation for what it is, and rely on the old stored information as valid answers to the current situation. In physiological terms, these are called ‘Past Programs’ and can control your life - and they may not have ever even been real, or valid, in the first place…


Just last week, there was a child that was found that had been kidnapped some 10 years ago. The neighbors were stunned when finding out all this, as he had not been locked up and was ‘free’ to communicate and live in the neighborhood for years. When queried about why he had not called the police or ran away, he said that his abductor told him, over and over for years, that he would kill his family if he left or told anybody. This was not real, as the abductor would have been put away and his family out of harm’s way, but in this child’s mind, being told that over and over again had developed a large and focused enough ‘Past Program’ that when he allowed himself to think about the freedom that was just outside that door, his mind didn’t consider the real possibilities and just reran the Past Program, as it was his reality and created his own prison.


I will bet that there are many readers of this article that have their own little ‘prisons’ they live in, locked in by themselves and they hold the key…


If most of your thoughts focus on positive things and achieving greatness, then all of your thoughts will have that base to work from. On the other hand, if most of your thoughts contain some type of worry and fear, then your thoughts will have to dig through all those issues first, and in my experience, usually get stuck in that morass, before seeing the true light of day for reality.


Hopefully, you are seeing how the concepts brought up in “The Thought Police” make more sense and you need to put more care into what you think and what does get stored in your computer memory. Have you ever heard the old computer term “Garbage in, Garbage out”? Does it make any more sense now?


In future episodes of this column, we will learn how we can actually directly query our computers to answer direct questions and get immediate and accurate answers to almost any question and how to use our computers to deal with almost any situation and/or interaction. We can learn to trust and respect ourselves, and be roll models for others, know when we are getting good deals and, more importantly, bad deals.


Skillful use of these techniques will result in having a full-time honest view into yourself that will provide all the insight and answers you want to make your life better.

 

 

 

    Practically Speaking ...
                                                                                
By Elizabeth Finchem, Tucson, AZ
 

 

A Soft Place to Land

 
by Elizabeth Finchem

 

 

What could we discuss that would be more practical than a soft place to land when faced with a life changing diagnosis? Some may answer, "that would be our family". For others, the first thing that comes to mind might be a physical place such as our home, our favorite recliner, our bed, our work, or perhaps, as in some cultures, it is the corner bar with a favorite group of friends who share the day's happenings; it was for my step father when he was told he had lung cancer.
 
Many laryngectomees are told about their local Club, State Association, or the IAL (International Association of Laryngectomees) pre or post op by their ENT, SLP, or the ACS (American Cancer Society). Some find this important information on the internet. Over time these support groups can become a second family; another soft place to land when answers and support are needed. Although we may never meet face to face, we have WebWhispers to help us span the Globe with our support network, but none the less a circle of friends that care about each other. Often we discover that we have found a place where we can learn, share, and be who we are even as we struggle through these new experiences, because we are greeted by friends who have been through this experience. Ultimately we become the greeters who welcome the new members.
 
Personally, I am grateful that soon after my total laryngectomy my SLP and I founded a club for a group of local laryngectomees who were scattered all over the surrounding counties. It is heartwarming to know that this club is still functioning thanks to all the people who keep the doors open for new members. As I changed my residence from one state to another,over the past few decades, and had to locate the local larygnectomee support group, I noticed a common thread. It reminds me of the way my oldest son recently described our home as he grew up; "There was always an attitude of abundance and sharing". This same attitude also seems to be second nature to some of those laryngectomees who are willing to take leadership roles in their own quiet way.

 

A few years ago I was invited to another support group that held their first meeting, with the hope of becoming a Chapter of SPOHNC (Support for People with Oral, Head & Neck Cancer [www.SPOHNC.org]). In Irvine, CA they have been meeting the first Monday of the month at 6:30pm for about 5 years at Cal State-Irvine Medical Center.
 
My problem was, I was an active member of the Lost Chord Club of Orange County. They meet every Monday morning, however on the first Monday they hold a two hour meeting; business meeting for an hour, and the second hour an SLP helps with the focus on the newest members before helping any others who have questions. Combining the long morning meeting with the early evening meeting is an exhausting day. 9am to 9pm including travel is an endurance marathon. The SPOHNC meetings were so worthwhile that a few of us from the Orange County Club managed to attend all the sessions regularly for the purpose of connecting the two groups, and share support and information.
 
When I moved to Tucson, AZ two years ago I again found a local laryngectomee club, and the SPOHNC Chapter to participate in as a contributing member. This past week the SPOHNC group learned that their dynamic President died suddenly. (Not so suddenly. He knew, but didn't want to share the changes in his cancer recovery.) Mike Herman was big hearted and generous. He had the attitude of abundance and sharing. Although he had lost part of his tongue he could speak, but eating was a problem. Yet, he spent hours preparing huge Italian feasts to share with family and friends. It was also his profession. In saying good bye to Mike I was reminded of another fellow that I admired greatly.
 
This fellow was Lou McConkey. He and his wife, Charlene, came to the Orange County Club meeting one Monday morning after his doctor told him that we might be a good support group for him while he adjusted to his new lifestyle. Lou, a slightly built man near retirement age, had an infectious smile and a glint in his eye. He was too busy with his successful jewelry design business in Long Beach, CA to completely retire. He designed and Charlene ran the business. What started out as a hobby, collecting orchids, turned into an ever-growing greenhouse at one end of their home. I remember the beautiful harvest of blossoms he brought into the Monday morning meetings for all of us. Each flower traveling safely by car in its own little plastic vial of water carefully set upright in a cardboard tray with holes. Such a gentle soul.
 
His zest for life was obvious with the little (big) things he did. When strawberries season was ready for picking Lou and Charlene would leave home early enough to stop by the fields to pick plenty of strawberries to bring to the Club meeting so everyone could take a box home to enjoy. He liked the sunshine and exercise while picking, as well as the gift giving. If they traveled to Hawaii for a gem show, he would bring back a little charm with a jewel inside for each member to have as a souvenir of their trip.
 
As a laryngectomee, Lou had some special challenges to deal with. The most obvious was the flap his surgeon had fashioned from forearm skin to fasten onto the stump of his tongue. Lou surprised many as he managed to learn how to speak intelligibly enough for his wife to understand him on the telephone with a Cooper-Rand intraoral electro-larynx. He learned to program his Lightwriter to speak for him in public. He worked his wit into many of his 250 standard messages, and an array of jokes.
 
He also learned to swallow well enough to drink his Ensure out of a champagne flute so he could join the rest of us for a round of drinks he bought, for a "toast" to our health at the Club's Christmas Dinner, or the Spring Dinner Theatre outing. He liked to party with the rest of us. I should mention Lou played the accordion. He was also a gourmet cook and baker. He never stopped shopping for the newest kitchen gadgets and equipment, and groceries for the dinner parties he prepared for friends. He took time to visit with the clerks, and they all knew him as a friend. For their summer get-away, Lou and Charlene had a little place in Coeur d'Alene, Idaho. He loved to fish and cook the day's catch for all of his neighbors and friends. He couldn't eat a bite with them. Instead he focused on staging a lovely table setting, and plate presentation, all served by him wearing his chef's hat, a smile, and for a little extra flair, a towel over his arm. Lou even took photos of it all for a cookbook he hope to publish one day.
 
A few years ago we were saddened by the news that Lou had another cancer, and died. Charlene and his friends went to work to make certain his cookbook was published, photos and all. It is entitled, "The Silent Chef". It was ready for sale a few weeks after his Memorial Service. The proceeds were donated to the Orange County Club. It is a beautiful momento from a dear friend who had a generous heart, an out-going Spirit, and that attitude of abundance and sharing.
 
Lou managed to make his personal space a soft place to land for all who knew him. We can say the same about our own, Dutch Helms. We all have the same opportunity to reach out to those who come after us, and share the knowledge and experience we have gained. Isolation is not a solution. It is a hard place in which to heal. If there isn't a support group nearby, please take the steps to start one. You can find free meeting space at the American Cancer Society, a library, a bank conference room, church basement or whatever you have available. Run a notice in the newspaper announcing the first meeting date. Call the ENTs and SLPs to include them in your plans, and ask for their support. They can tell patients about the group and help out as a guest speaker at a meeting. When you get organized you can join the IAL and your club will be listed on http://larynxlink.com/, as a Member Club.
 
Remember how scary it was when you were a brand new laryngectomee? Remember the many questions and unfounded fears? A smile and a handshake can dispel so much angst. When the new visitors see a positive outcome for the members, each using a different way to speak again, all laughing and enjoying each others company, there is hope for a soft landing.
 

 

 

 

 

 

 


 
 BETWEEN FRIENDS          Donna McGary
                                     "That which does not kill us makes us stronger"
 

 

 

SS Disability Benefits - Part 1
Getting Started

 

The issue of disability is raised within WW with some regularity. There tend to be two strands of discussion. The first concerns the very practical questions of: who qualifies for benefits and what does the application process entail. The second is more philosophical and addresses the very definition of disability and whether larys are indeed handicapped, disabled or “differently-abled”.
 
We have some members who say they consider it just an inconvenience. I am NOT going to discuss that highly subjective issue this month. Several months ago, Herb Simon made an eloquent and heartfelt statement expressing his position, one that is shared by many highly respected members of our community. I suspect that this may be a subject on which some of us agree to disagree. A good attitude goes a long way in mitigating many of the challenges larys face, but even that has its limitations. Some would suggest, to paraphrase a popular adage, “You are only as disabled as you feel”. Well, yes, but as anyone over 30 can attest, sometimes you are just as old as you are.
 
So for those of us, who due to our “condition”, are unable to work at our previous jobs or otherwise maintain gainful employment, I will share my experiences managing that labyrinth known as the US Social Security Disability Administration. Each situation is unique but I will share what you can expect and the benefits and drawbacks as I see them.
 
First, a bit of history. I had just turned 47 (literally, two days earlier, in March, 2000) when I was diagnosed with sub-glottic adenoid cystic carcinoma. I was living in Woburn, Massachusetts, doing an internship at a retirement community, while I attended graduate school at UMASS Boston working on a PhD in Gerontology. I was initially diagnosed at the Lahey Clinic in Burlington and subsequently referred to MassGeneral for a second opinion. A complete laryngectomy was the surgical option but both doctors agreed that given my type of cancer and its growth pattern, radiation was a viable option. It offered a chance to preserve my airway and my vocal cords with the future option of going for the surgery should the cancer return. ACC is a very slow growing cancer so there was the real possibility of having both voice and airway for a number of years even if it did recur. I opted for radiation, with the complete support of two surgeons and a radiologist. I want to be perfectly clear that I got both top-notch medical advice and treatment.
 
Unfortunately, I did not tolerate radiation therapy well. The radiated area became necrotic; I developed severe radiation bronchitis and the ongoing complications ultimately lead to a permanent tracheotomy and true fixed vocal cords. The scarring means I a not a candidate for a TEP. I still have a nasty cough and I can’t do ES because the air intake process triggers more coughing spasms. I now use an EL very successfully, if I do say so myself!
 
However, in September of 2001, I was struggling with a number of problems. I had my trach done the previous June and although I could talk a bit by occluding, my vocal cords were becoming more closed and fixed. Frequent procedures to dilate and debride, removing dead tissue, (“Roto-rooters, I called them, much to my ENT’s chagrin) were meeting with limited success. I wore a pain patch because of the ongoing necrosis, took codeine for my cough and prednisone for the vocal cord swelling. I was a mess. I had withdrawn from school and was living at the retirement community, pretty much as a charity case, although I helped the Program Director however I could, doing planning and research. I asked my doctor if he thought I might qualify for SS Disability and he said “Absolutely.”
 
My cancer was in remission- it was complications from the treatment that did me in. I called the local SS office (the number is in the front of most phone books under Federal Govt Agencies) and asked for an appointment. I was able to get a date within a few weeks. They sent me a packet of papers to fill out beforehand, which I did, thoroughly, and when I showed up for the interview, the intake officer proceeded to ask me all the same questions again! I tried to answer but he finally realized that making me talk was a bit of an uphill battle so he sent me home with another packet of papers to fill out and return, after I signed multiple release of medical records forms.
 
Mostly, what they want at this stage is a timeline. Those of you who keep journals or have a loved one who does will be at an advantage. Sometimes all the dates and places for appointments, referrals, procedures can blur together. You are entitled to a copy of all your medical records, but at this point, just make sure you give SSDA a list of all of your doctors, all the clinics/hospitals/offices you have been to, all the meds you are taking and be very specific about what you had done and what your current issues are. This is NOT the time for a “stiff upper lip”. Nevertheless, don’t overstate your case. That just sends up a red flag. Let your doctors and providers know you are filing and enlist their support. I am convinced that because my ENT and his nursing staff knew me and knew I was making an application, requests for records and statements were forthcoming and not relegated to the bottom of their pile.
 
SSA has a comprehensive web site, http://ssa.gov/, and although some of it is in bureaucratic mumbo jumbo, it’s a good place to start getting basic information. For the uninitiated, SS Disability benefits are based on earnings, just like retirement benefits. You must have worked and filed tax returns in order to qualify and your monthly benefit is based on an average of your highest ten quarters (not years) of income.
 
If approved, you qualify for Medicare, however, those benefits don't start until two years from your initial disability determination date. Part A is completely covered and the premiums for Part B, if you opt for it, are deducted from your payment, which arrives in the mail or can be directly deposited in your bank on or about the 1st of the month. If you do not have sufficient lifetime earnings to qualify for SS, there are other supplemental SS income programs available, which include Medicaid.
 
SSD benefits become available when you are unable to work for six months or longer. Once you apply for benefits and disability is determined, benefits are retroactive to six months after the start of your disability. In my case, it was determined I became disabled in March 2000, so benefits began to accrue in Sept., 2000, even though I didn’t file for another year. You have to be unable to work throughout this period. Obviously, I kept expecting to get better, go back to school and have this all be just a troublesome chapter in my life. My first SS check was for 14 months of benefits…YEE HAW!

During the time between when my school health insurance ran out and Medicare started, I relied on state administered programs for low income uninsured citizens as well as a program Lahey Clinic and many hospitals have for providing medical care for low income patients at reduced costs or for free. You need to fill out some paperwork, but it is a godsend. I will be honest, I also relied heavily on family and friends. I am very fortunate to have family willing and able to help financially. The interim period can be rocky without some financial support. I was able to access my retirement fund as well, without penalties for early withdrawal because of a hardship exemption.
 
SSD benefits are not for everyone. It’s like taking early retirement and living on a relatively small fixed income. It was the right decision for me.
 
Next month, I will talk about what happens when you try to go back to work, what the review process is like, and when its time to hire a lawyer.
Donna
 
 

Welcome To Our New Members:

 
We welcome all new laryngectomees, caregivers, and professionals to WebWhispers! There is much information to be gained from the site and from suggestions submitted by our members on the Email lists. We look forward to getting to know you and to sharing information.
 
Pat Sanders, WW President
 
 
We welcome the 25 new members who joined us during February 2007:
 

 

Krista Bedore - (Caregiver)
Rosedale, BC, CA
Harold Bernard
Miami Gardens, FL
Matt Brierley
Coldwater, Ontario, CA
     
Hazel Camagong - (SLP)
Ocean Springs, MS
Callie Cameron
Okeechobee, FL
Ed Collum
Amarillo, TX
     
Kenneth V. Fish
Mission, TX
Bill Feineigle
Pittsburgh, PA
Michael A. Fuhre
Kingwood, TX
     
Dave Higgins - (Caregiver)
Coon Rapids, MN
Elizabeth De Lacy - (Caregiver)
Henderson NV
Laura Laundry - (Caregiver)
Leominster, MA
     
Julie Bishop-Leone - (Vendor/SLP)
League City, TX
Tom Limberg
Redmond, WA
Carolyn Stewart-McLean - (SLP)
Eimeo, Qld, AU
     
Giro F. Navarro
Terra Ceia, FL
Dolores O'Neil - (Caregiver)
Dix Hills, NY
Betty I. Pittman
Rocky Mount, NC
     
Susan Schreiber
Las Vegas, NV
Marissa Martin Sobczynski - (Caregiver)
Somerville, MA
Robert Spahr
Portland, IN
     
Sharro Thompson - (Caregiver)
Waskom, TX
Jaclyn Trachta - (SLP)
Baltimore, MD
Joe Watson
Lake Placid, FL
     
Don Wilson
Las Vegas, NV
   
     

 

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
 

 

 

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.
 
  © 2007 WebWhispers
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