April 2009

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders Quit Reading The Papers News & Events
Voice Points Linda Stachowiak  SLP Larys On The Road Education-Med
WebWhispers Columnist Mike Burton From Me To You-Part 4 Experience
Vicki's Midnight Train Vicki Eorio Nesting Experience
Between Friends Donna McGary On The Shoulders Of  Giants Commentary
Practically Speaking Elizabeth Finchem Nice Putt Or Nice Butt? Education 
A Scottish Accent Victoria Passingham Rosalie Miles Macrae Tribute
Voice Of An Artist Avraham Eilat God And The Mystery Of Creation Art
Editor's Mailbox Jack Jkac The Difference A Year Makes Letters
New Members Listing Welcome News & Events

 

 

 

 

I've Got To Quit Reading the Papers

 

Ever since I can remember, I have started my day with the morning paper. I had to read it and digest it, along with my breakfast, in order to understand what was going on in this world. Of course, this habit started long before there was a television to tell me everything I wanted to know (and a lot I didn't.) But, it has remained a way of setting up my day and, like links on the computer, gave me areas to explore to learn more about a subject.

Now, I often leave the table with some anger in my gut along with my breakfast. Maybe I have to change my breakfast foods to ones that are less likely to cause indigestion. Or, maybe, just maybe, I might have to change my lifelong habit. YET.... would I be throwing out the good with the bad? Can I train myself to discard the nonsense and retain the nucleus of the idea.

What I learned from today's paper:

1. Ambulance stethoscopes may carry drug-resistant bacteria.

Comment: The only time I had to be hauled to the hospital in an ambulance, the attendant in back with me, reeked of cigarette smoke and I retched all the way there. It never occurred to me that adding injury to insult, he could be subjecting me to a long living bacteria. Well, that's enough to make my day. As I read further on, the answer is very simple, wiping the stethoscope with alcohol but how many of us are going to sit up on the stretcher, point a finger and say..."Have you cleaned the stethoscope since your last patient?" Now, that makes me wonder about the spreading of those diseases in hospitals.. Do the doctors and nurses wipe the stethoscope. Come to think of it, they don't even wash their hands because they do that pulling on of the gloves. OK, that protects better, but when do they use an alcohol wipe on the stethoscope?

2. Post Office in red, wants to cut delivery to 5 days.

Comment: It is about time. One more day a week in which I do not receive ads and brochures and catalogs that I didn't want anyway. Boy, do I have a solution for this. They should charge more, a lot more, for the crap mail. That will either increase the income or decrease the volume so that Monday, Wednesday and Friday would be a gracious plenty to have someone visit my mailbox. If we are going to save $3.5 Billion for dropping one day's mail, would we then save $10.5 Billion for dropping three days? After all, they still have the one day delivery if you pay extra or there are UPS and Fed-Ex. Oh! Dirty words to the USPS?

3. City owes for misused HUD cash.

Comment: So, what's new? (sigh) Was it last month or last year, they misused money the last time. Oh! Yesterday.

4. Sinking the interstate

Comment: They have submitted a proposal to rebuild the Interstate through the middle of town by dropping it to below street level. Hmmm. Pictures of the "after" look gorgeous with the wide streets running alongside and the big trees, where now there are none. My first question is what are they going to do with the parking lots under the Interstate that are used for the Civic Center. It was a good way to hide the cars and it was covered parking. I'll bet they are going to build a new high rise parking lot, which they don't happen to show in the after picture, big and ugly.

5. Prescription Discounts

Comment: Finally some good news. Together RX Access has prescription help for the uninsured and they have expanded eligibility requirements. It is sponsored by multiple drugmakers. Check out their website at www.togetherrxaccess.com or call 800-966-0407 and see if they can help you.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals 

Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S

 

(LisaProper@gmail.com)                      [© 2009 Lisa Proper]

 


Laryngectomees On The Road

Linda Stachowiak MS/CCCSLP BRS-S
M.D. Anderson, Orlando, FL

Educating patients on the nature of the surgery, plan for rehabilitation and long-term outcome is often a routine component of most speech pathologist's plan of care for the total laryngectomy patient. For those laryngectomees who have a tracheoesophageal voice prosthesis (TEP), the education is often more complex because of the ongoing attention that a voice prosthesis requires. As a clinician, who works in Florida, I am often contacted by a "snowbird" (ie Wintertime Florida resident) who has run into prosthesis problems while temporarily residing in the Sunshine State. Assistance to a laryngectomee, who is unfamiliar to you as a clinician, can present its fair share of challenges! A patient, who is well-versed on their own care and would like to be prepared for the possibility of an unexpected visit to an unfamiliar clinician in an unfamiliar facility, can be put at ease with some advanced preparation and planning.

SLPs might wish to share this "checklist" of thoughts with your laryngectomee patients who are lucky enough to travel, thus spending time away from their primary residences and medical care for periods of time.

Traveling Tips for the TEP user:

There is much variation from facility to facility on procedures for stocking and carrying voice prosthesis. Some facilities have all brands in stock, others carry only specific manufacturers or types. Some facilities will bill your insurance for you and yet others require you to bring a prosthesis with you to be inserted. Please be aware that facilities differ and you may be required to do something different than you have been expected to do in the past (example: order and pay for a prosthesis on your own and request that the company file for your insurance so that you can be reimbursed.)

Knowing the size and the type of prosthesis you wear is critical. If the clinician carries prostheses in stock at his/her facility, they can check ahead of time and be sure they have your size. If you carry a "spare" with you, that is even better.

Does your insurance require prior authorization? If so, have the number you need to call for that authorization available to you when traveling.

In order for a clinician to see you and bill your insurance, they need a prescription from your MD. Most physicians are more than willing to give a patient a prescription, prior to traveling, that states:

"TEP replacement/troubleshooting" for emergency cases.

At the very least, have the contact information for your MD available so that they may be asked for a prescription, if need be.

Most Speech Pathologists, who work with the laryngectomee population, are familiar with other clinicians who do the same in various parts of the country. They may have an emergency contact available for you before you begin your travel or may be able to search out a clinician with a little advance notice through professional networking sites.

Some patients have "special needs or unique anatomy" that may require some special care or attention. This may be that the TEP tract closes down easily and needs to be over-dilated prior to insertion of a new prosthesis.....OR maybe the prosthesis looks a bit long but a shorter prosthesis in the past have caused problems, so they stay with a slightly longer one that isn't the "perfect" fit...... Always share these special circumstances with the Speech Pathologist that is seeing you for the first time. Making the visit a pleasant and successful one is the ultimate goal!

If you have your speech Pathologist's address/fax number, we would be more than happy to send your regular SLP a copy of our progress note so they are aware of the date of the visit and the treatment provided.

If your patient is going to be routinely spending three-six months out of the year in the area where they may require emergency TEP assistance, it may be a good idea for them to get established with a head and neck surgeon or otolaryngologist in the area, who is familiar with laryngectomees/TEP's. With HIPPA regulations and consents for medical records, getting established with a new physician can take some time and effort. Why not consider encouraging them to establish themselves before there is a problem.

Hopefully this list can provide a comfort level to your patients and their families when traveling away from home. I recently saw a laryngectomee, who was spending his first "snowbird" season away from the snow and cold of the north, here in the suburbs of Orlando. On his drive down to Florida he began having a leaking prosthesis just a few short days after replacement. He and his wife were well versed on his TEP and the change/ resolution to the problem was rather simple. They were appreciative to know that their first time "away from home" wasn't ruined by the need for this simple medical intervention that was easily accessed. The keys to the successful intervention were felt to be the combination of items listed above! Please feel free to copy this tip sheet and share it with your patients.

 


 

 

 

FROM ME TO YOU (Part 4)

by Mike Burton,
Middle England, UK

 

With thanks to the Beatles for the main title, the paragraph titles and lyrics. The names have been changed to protect the innocent and in some cases save their jobs. This story is dedicated to my wife and children for the support they gave me before, during and after my ordeal.

 

Drive my car

(Working for peanuts is all very fine)

 

It was nearly five months since I had been referred by my GP to see a specialist. I was now coughing almost constantly with increasing amounts of phlegm. My children would often remark about it and how I was starting to look thin. I would explain that it was because Dad was ill and that was why he had to keep going to the hospital, sometimes with Mum. The doctors would get Dad better soon, though. The youngest, Stuart, age twelve, seemed to accept this, but I was not so sure that our fourteen year old, Thomas, was as easily convinced.

I received a letter from the hospital, at the end of June, stating that a bed would hopefully be available on Thursday 6 July and to phone the Doctor’s secretary to confirm that the date was convenient. I was to report to the ward at midday on the 6th, but reminded to phone the hospital one hour before admission to confirm that the bed was still available. Frigging typical I thought, five months down the line and still no guarantees of a bed. But according to recent TV reports and the newspapers, the UK NHS was in excellent shape.

“What an absolute load of bollocks!” I exclaimed.
“Pardon love?” enquired Susie, who I had not realized was in earshot.
“Oh nothing love, just talking to myself”

The day arrived and it was forecast to be yet another scorcher! I was to have nil by mouth after eight o’clock that morning. The first and last cup of tea tasted like pure nectar. Both of us said goodbye to the kids as they left for school; they knew that Daddy would not be there when they got home. If, for some unknown reason, Mum was not there either, a contingency plan with a neighbour had been put in place and they were both reminded what they were to do if this was the case. Shortly before eleven o’clock Susie made the call to the hospital to find out if my bed had been given to somebody else. In a way I hoped it had been, but I was wrong. Making some unnecessary checks to my overnight bag (I had done this on more than one occasion earlier) we left the house to go to the hospital.

We arrived at the ward early and after showing my letter of appointment, a nurse led us to a bed at the far left hand side of the ward. The ward itself was not large, housing only ten beds in total. I began to unpack my overnight bag and place its contents in the locker beside my bed. Although it was only a small locker and my bag also small, I managed to change my mind on what went where on a number of times. I then started to try to read the daily newspaper that Susie had purchased from the hospital shop. But it was no good, I could not concentrate. I read one paragraph three times and still did not fully understand it. Frustrated I offered the paper to Susie who refused to accept it, so I cast it to one side of the bed.

An hour and a half had now passed by, Susie and I had not said much to one another and the paper was still in the same place where it had been tossed earlier. Then a young lady dressed in baggy blue trousers and matching short sleeved top approached.

“Mr Burton?” she enquired. “Hi. My name is Gill and I am the anaesthetist for your operation today. Has the Doctor been to see you yet? No? Well, no doubt he will be here soon. Meanwhile I have a few questions I would like to ask you”.

She went on asking questions for about ten minutes, nearly all of the answers, as I recall were no, but they still were required to tick the boxes on the form attached to her clipboard. Satisfied she had all the facts on paper she left.

Shortly afterwards, another nurse approached and proffered a gown. “No need to put it on just yet, Mr Burton. We will tell you when.” She turned and walked away.

I took it and placed it on the bed next to the discarded newspaper.

God, it was hot in that hospital! There was no air conditioning or fans, all of the windows were open as wide as possible, but there was just no air flow, with the sun still beating down. Susie was taking small sips out of a bottle of water she had purchased from the hospital shop with the paper earlier, looking almost guilty as she did it. I was nil by mouth.

“Look, love,” I said “there’s no point in you hanging on around here, why don’t you go and make sure that you’re at home when the kids arrive. You can always phone the ward if there’s anything you want to know.”
“Yeah you’re right, love,” said Susie, getting up from the chair. “I will push off then. Love you” she said.

I gave her a hug and kiss, and waved goodbye to her as she left. In reality, I think she really wanted to be out of there, but that conversation never arose, even to this day.

About half an hour had elapsed when a chap dressed again in a blue uniform approached.

“Mr Burton?”
“Yeah, that’s me” I said in a hot, bored tone.
“I am the anaesthetist for your operation today. Has the Doctor been to see you yet?”
“No, not yet and I have already spoken to an anaesthetist, Gill, I think her name was”.
“Yes, I know, but just for the record we like to double check the things you have told Gill so that we are sure.” I then proceeded to answer the same set of questions as I had done before but with somewhat less enthusiasm.

Another hour had probably passed by when yet another similarly dressed man approached.

“Mr Burton?” he enquired. “Yep” “I am your anaesthetist”…….”I don’t believe this”, I said. “You’re the third”…..”Yes, I know”, said the man, who introduced himself as Bill, continuing the interrupted statements between us, “One of the anaesthetist’s has been called away on an emergency and I am his replacement. Has the Doctor been to see you yet?”

I did not even bother to respond, I think the look on my face and arm gestures probably told all. I then proceeded to answer the same set of questions as I had done twice before.

At this point I was still hot, alone, worried and totally pissed off with the delay. Although to be fair, there was no exact time given to me for the operation as they just fitted you in when they could. Plus, I was still very thirsty. I lay on my bed knowing there was nothing I could do apart from look at the paper which still held no interest to me at all; the clock upon the wall only increased my frustration as each minute passed. It was now half past four and finally a nurse came over and pulling the curtains around my bed asked me to get undressed and don the gown given to me hours before. Doing things up back to front was always going to be difficult as I will explain in a while.

Having done this badly, as only one out of the three ties worked, I pulled the curtains back to their original positions to prove to the nurse that the job had been completed. A few minutes later a different nurse approached and she asked me if I had brought a dressing gown and slippers.

“Of course” I said, almost quizzically. “Put them on please as we have to walk to the operating theatre.” I was gob-smacked. Walk? Where was the trolley? Where was the wheelchair?

“Don’t worry about your dressing gown and slippers. We will see that they get back okay”, said the nurse re-assuring me of their safety.

She was not wrong, we did walk. How could I have doubted her in the first place? She had no reason to annoy me; she was just doing her badly paid job. Upon arrival, at the nurse’s request, I removed my slippers and dressing gown and then lay upon a trolley. She attached wires onto my chest.

“No need to worry, Mr Burton”, she said “We need these to monitor you during the surgery.

The Doctor, dressed in the same blue garb as the anaesthetists had been wearing appeared.

“Ah, Mr Burton how are you today?”
“I’m okay, thanks”, was the official response. Frigging stupid question, I thought to myself. I do this every day, don’t I, for God’s sake.
“The procedure today is fairly simple and should not take too long”, he stated.

He then proceeded to tell me of all of the problems that could occur during this “routine operation”, a de-bulking of the tumour and panendoscopy. Amongst the vast array of potential problems, was the possibility that the tube going down my throat to keep me alive during the operation might not fit due to the size of the growth, forcing him to perform a tracheotomy. I was hoping to leave the next day, all being well. I had promised the kids I would be home by then and Susie was expecting to pick me up, but the last statement concerned me. He left without adding anything further. I began to worry. None of these potential pitfalls had never even been mentioned prior to this very moment. I thought to myself, with a doctor like that, having the bedside manner of a Gerbil, it would not be unreasonable to assume that if you were to go and see him with an ingrown toenail, you would leave thinking of committing hari-kari.

I was now rapidly losing the will to live. Another nurse appeared and pulled the curtains around the bay where my trolley was parked.

“Sorry love” she said “just bringing one out of the theatre, your turn to go in next.”

A few seconds later I heard the sound of the trolley and voices of staff presumably in the attention of the patient in question. What seemed like an age went by when the curtains re-opened and Gill the first anaesthetist I had seen appeared. I told her of everything that the surgeon had said about the tube and the tracheotomy.

She responded, “Don’t worry, love, just a belt and braces job. He does it all the time, pisses us off if the truth be known. Look, can you swallow food okay?”
I nodded, but was reluctant to go into too much detail.
“You will be fine then. We will be spinning you around and taking you in backwards, okay?”

As this was said, Gill left and another nurse came out shortly after and proceeded to put the plan into action. I was about half way round the circle when he said to me,
“Have you signed your consent form yet?”
“Nope.”
The trolley stopped as if it had been fitted with air brakes and he disappeared with a speed that a 100 metre sprinter would have been proud of in an Olympic final.

A minute or so had passed and another nurse came up apologising firstly for the way I appeared to be in the middle of nowhere and secondly for the delay. He then started to pull the trolley backwards and attempted to complete the circle towards the doors of the operating theatre. The first nurse then came back calling out telling him to hold on. He thrust a clip board at me with the consent form attached and proffered a pen. Having no glasses, I had no chance to read or understand it.

“Can you sign this by the cross at the bottom please, Mr Burton?” said the nurse, pointing the pen towards the bottom of the page. I put the sole of my right foot flat on the trolley and pulled it towards my backside creating a slope with my leg on which the clipboard could be rested. Placing the board on my sloping thigh and lifting my head slightly and squinting to locate the cross I proceeded to sign the form as instructed. I have no real idea what I had signed for to this day. Passing the board and pen back to the nurse, the trolley again started to move through the doors arriving alongside the operating table. After a careful bit of trolley alignment, Gill asked me if I could slide across from the trolley to the main operating table itself. I managed to do this but needed a little help. Gill, taking my left hand told me that I would feel a sharp scratch as she put a piece of kit being one needle with two exits points and secured it with tape, into the back of my hand, something they obviously needed during the operation. She then put a mask over my mouth and began to talk me through what was going to happen. I started to breath quickly to get this part of the proceedings over as fast as possible. She told me to slow down my breathing rate and relax. I did as I was told and a strange smell went up my nostrils as little by little the gas was, I assume, slowly released into my lungs. I began to feel woozy, the room started to darken as my eyes slowly closed and then……………....

I awoke as a nurse shifted me onto my left side while I coughed what looked like a mixture of saliva and blood into a grey coloured cardboard dish she was holding. I was in the recovery room but had no idea how I or the grey coloured cardboard dish had got there in the first place.

“That’s it, Mr Burton, the more you cough up the better”, she said. Finally, the coughing ceased and once the nurse was happy I was on my way back to the ward.

I was still feeling woozy from the anaesthetic and dozing off every now and again. The needle type thing had gone and was replaced by a plaster. I had no real idea of how long I had been back on the sweltering ward, but out of nowhere my bed was suddenly surrounded by people. Was it five or was it six? Most of these people I couldn’t remember meeting or even seeing before, but I would see them again. The one I did recognise was the surgeon. He was the only one to speak.

“Well, Mr Burton, we have had a look at your throat and a sample of the growth has been sent for further analysis. What I can tell you now is that your voice-box has been infected and will have to be removed. You only need a tiny bit of it to get infected and the whole of it has to be removed. This is major surgery and we will need to discuss this at some point in the near future. In the meantime you should make every effort to give up smoking. Have I made myself clear?”

I nodded in agreement and said, “Does this mean I will not be able to talk again?”

“We will discuss this at some point in the future”, he responded as he turned on his heels and together with his troupe, left the ward.

To be continued...next month... “I’m Only Sleeping”
 

 

 

 

 

NESTING


I noticed two weeks ago that the hawk's nest was gone from the old tree in the field. That tree had survived all a Georgia winter could throw at it: thunderstorms, high winds, and even snow. It had survived when trees around it lost their limbs. And then it was lifeless. Bare.

Last week I saw a hawk circling over the field. Was it the mama hawk from last year? Was it one of her babies, ones I had watched launch themselves off of the garage roof, grown and returned? No way to tell but one thing I was sure of, the hawk had destroyed the nest. Being out there in a tree without leaves made it too vulnerable to be used again.

Vulnerable is something I feel deeply these days. Part of it is the economy, as it is for all of us. Part of it is health related, as it is for all of us. However, the bogey man, who is turning my world upside down, is the loss of ever working in a field I had loved. My nest is also gone.

I have worked all of my professional life in health care. First, as a nurse channeling right through to Florence Nightengale, or so I thought. I was off to serve and heal the sick! To say I loved my job was putting it mildly. I worked in four states, always learning. However, one night, in a small emergency room in rural Minnesota, we took care of a young college student who had been riding her bike across the railroad tracks and had been hit. She was critical, injuries far beyond our capacity to treat. I rode in the ambulance with her to the next regional hospital, holding her hand and talking with her though she was unconscious. We had put on MAST pants that are used to force all the blood from the extremities to the heart. Once we arrived at the hospital, she was rushed to the operating room. Moments later we were informed when they removed the MAST pants, she bled out and died. That was when burn out hit me. I had failed and one too many patients had been lost. I couldn't return to work until a very wise woman at the hospital, her name was Mazie and I am sure she is gone to her reward, called me to come in and talk. She convinced me if I really wanted to make an impact on nursing, I had to get into administration where I could influence the quality of care in a far greater way than taking care of one patient at a time. I took her advice.

Again, I loved it! I loved my nurses, I cleaned house when necessary (like night nurses sleeping on the job), brought in new programs and educational sessions, and would work for hours without end. Then came an offer from my administrator to consider working for HMOs. Heck, I didn't even know what HMO stood for! I investigated. Keep in mind, this was Minnesota, the home of HMOs. At that time, HMOs were true to their mission, health maintenance along with treatment and patient education. Lots of work with providers to convince them more is not always good. For instance they should not suggest carpal tunnel repair for every sore wrist. Yes, I still loved my job.

More opportunities came long, including helping to design and install a brand new computer system, one of the first that linked patient appointments, review of benefits, membership, and utilization. These were exciting and even cutting edge. So intoxicating that I left the HMO to work for the computer company who developed the software. I was a little out of my element but still on the edges of health care since health care institutions were our customers. Then, a customer asked me to join them and, once again. I was back in clinics working so closely with the staff to learn computer functions I believed would ultimately help the patients. More job offers to do it all again and finally consulting with HMOs. Yes, I still loved my job.

In 2000, I became a lary and also unemployed. Through the kindness of past clients who gave me writing assignments, I found I could do well without "verbally" talking. We survived. Finally, another full time real job was offered to me, laryngectomy and all. We moved to Georgia and I promised myself this was my last move. No more hopping from nest to nest.

This proved to be my most stressful job. Not because I couldn't do it or that it was something new to me but multiple changes, in management and in corporate direction, dampened love of my job for the first time in my life. I was determined to make it work. After almost five years of unremitting stress, I had a stroke and had to go on disability leave. Shortly following that challenge, I had a lumbar fusion. My employer decided they could get along without me and, for the first time in my life, I was unemployed in the middle of a huge recession.

After sending out over a hundred resumes, the reality of my situation dawned on me. I really am not able to return to corporate life. I still have short term memory loss and smoldering back pain. I can't find an academic course to help me renew my nursing license, a license I foolishly let lapse years ago when I was so removed from the clinical area. With it, I could be a nurse that evaluated referrals and clinical protocols. It is probably for the best that I can't do that. I would have trouble denying any medical care for anyone. So I wouldn't have lasted long at any job that required limiting care.

Like the hawk's nest, my nest is also gone but my vulnerability remains. It became time for a change and time to admit my shortcomings. Like my beloved dog, Annie, who has learned to screech to a halt before the steps to the living room when her ball is thrown too far, I had to screech to a halt with my unrealistic capabilities. Annie is getting old and fat, just like me. Her hips hurt from time to time, just like my back. She is content to lie in the sun for hours rather than chase squirrels. Time for both of us to adjust.

After much thought and many conversations with my husband and caregiver, Frank, I decided to go back to school but to do it online. A self paced program that, on completion, should result in a chance to work again. I am learning to be a medical coder. With an automated medical record high on the list of priorities of the current administration, I hope lots and lots of providers will need help coding to the new regulations. I hope. I really, really, hope I find that new nest.

And I will keep an eye open for the new hawk's nest. There is sure to be one in another tree.

Every night I listen to at least one train, headed through the dark to points unknown. Like me and the hawk, looking for new, as yet unknown, nests.

VICKI

 

 

 

 

On the Shoulders of Giants


“If I have seen further it is because I stand on the shoulders of giants”.


This popular quote is generally attributed to Sir Isaac Newton, and he did write it in a letter to fellow scientist, Robert Hooke, in 1675. However, he was actually borrowing a common phrase, used by many of his contemporaries, from a much older source, 12th century theologian and author, John of Salisbury, in his 1159 book, “The Metalogicon”.


"We are like dwarfs sitting on the shoulders of giants. We see more, and things that are more distant, than they did, not because our sight is superior or because we are taller than they, but because they raise us up, and by their great stature add to ours."
John's thought was inspired by an even earlier Christian thinker named Bernard of Chartres. John was born in France and studied there during the early 12th century and it is likely that he learned the phrase at this time. In his book, On the Shoulders of Giants, Robert Merton quotes Bernard as saying, in about 1130:


"We are like dwarfs standing [or sitting] upon the shoulders of giants, and so able to see more and see farther than the ancients."
[Aerospaceweb.org has a fascinating study of the history of the phrase and is my source.]

There is an honesty and humility in old Brothers John and Bernard’s perspective that is notably lacking these days, if you ask me. Too often, it seems that it is the “other guys” who deserve the blame for what is wrong and “we” deserve the credit for what is right.

Human beings have been dividing into these two camps, us versus them, since the time of giants and dwarves, it would appear. Kind of discouraging, isn’t it? So, let us explore the good Brothers’ exhortation to collaboration. A fitting homily for our times, I think. Just imagine what we 21st century dwarves and giants might accomplish together if we weren’t so hell-bent on proving our individual superiority.

As I see it, the crux of the problem is this: who gets the credit for discovering that new world over the horizon; the one who first spied it or the one who provided the critical vantage point? This drama is played out time and time again- in art, science, business and politics. It has divided families and nations alike. Wars waged, fortunes lost and hearts broken- all over bragging rights to a prize nobody owns forever.

There are those who openly acknowledge their debt to the past and in doing so bring freshness and vitality to their field. Cezanne became a copyist as a student, immersing himself in the essence of the old masters. From that foundation, the giants of his time, he was able to create a totally new perspective. He became the giant on whose shoulders Picasso stood.


Shakespeare needed Aeschylus, Sophocles and Euripides and they, in turn, needed Homer. Einstein needed Newton and Newton needed Galileo and Galileo needed Pythagoras. It would appear we cannot do this alone.

Too often we forget on whose shoulders we stand. WebWhispers today stands on the shoulders of Dutch Helms. It is so much more than he first imagined, and I suspect he would be very pleased, indeed, that he became our giant. Like giants before him, he did not enter the Promised Land, but he saw it and knew that, because of him, we would make it.

These days, Avraham Eilat writes of the influence of past masters to inspire him to create original and vital new works. Being a laryngectomee informs his work but does not define it. There are young artists today who will, in time, clamber up to his shoulders and be so inspired by the view that they will become giants themselves.

Elizabeth Finchem always quotes her teachers and mentors as she builds on their legacy to find new ways to engage, inspire and teach. ES will stop being an endangered species and her students will re-invigorate the technique by standing on her shoulders.

Every day on the list and in the forum, members share experiences, advice and knowledge. We are a family of dwarves and giants- all vying for attention, recognition and acceptance. It is all here, but just like with any unruly group of kids, sometimes we need to be reminded, as that dwarf squashes your face on his way to your shoulder; what goes around, comes around. It will be your turn next time.

 

 

 

 

 

Articulation: “Nice putt, or nice butt?”

 

When working with someone on new skills it is helpful to ask about personal interests. Whether we are working on using an electro-larynx, or the principals of esophageal speech, I find words and phrases they can use immediately. I think of it as practice when the EL user doesn’t mouthe the words, but picks up the device to say it out loud with this new voice. If the student is developing esophageal speech the task is a little different in that “practice” becomes NOT picking up the EL to say a name or call the dog.

One woman who I was teaching esophageal speech to is an avid golfer. I am not. So, I had to ask her what sort of phrases she and her golf partners would use during their round of golf. One of them was “nice putt”. She was so proud when she heard herself saying this typical compliment. The very next time she went to see her ENT for a check up she told him about her progress with her new voice, saying, “Nice putt!” Her doctor turned a little red because he thought she said, “Nice butt!” We all had a good laugh over that one. This was many years ago, and the need for precise articulation, and careful enunciation is still critical, no matter which method of alaryngeal voice you are learning to use.

According to Webster’s Dictionary:
Articulate – “To utter distinctly: to pronounce carefully; enunciate. To produce speech sounds by moving an articulator; phonate.”
Articulator – “in phonetics, any organ in the mouth or throat which, when moved, gives or helps to give speech sounds their characteristic acoustic properties; in English the chief articulators are the lips (especially the lower lip), the apex, front and back of the tongue, and the glottis; the uvula is a minor articulator (co-articulator).” Author’s note: The teeth ought to be included in this list.

The difference between P and B is the positioning of the lips, and the amount of pressure you allow to build up in your mouth before popping the P sound with puckered lips. You can feel the difference if you try these two consonants now. Look at how different they look in the mirror. This is good visual feedback to help you remember how important this move is while you are developing new skills. Note: It is important that you do not blow out of your stoma trying to use lung air while making the P or B sounds for esophageal speech. Use only the air already in your mouth to inflate your cheeks and build the right amount of air pressure.

I cannot stress enough how necessary it is for a complete understanding of the separation of mouth air only for esophageal speech, and the use of lung air for tracheal-esophageal prosthesis voice. The benefit for the electro larynx user who does not blow with lung air for speech is the absence of stoma blast while talking. While both methods, ES and TEP, vibrate the same segments of the esophagus to produce a new sound source, they are quite different systems with different air supplies. ES uses mouth air only that is delivered via the top of the esophagus to about where the larynx used to sit. TEP voice occurs as lung air is exhaled up from the lungs; similar to the way it was for laryngeal voice, but with the vibration happening in the esophagus in the same area as just described for ES. The pitch will be about one octave lower, and volume is usually softer for both methods. Loud volume should not be a goal for the first year.

Amplification with a good quality microphone is highly recommended not only for soft voices, but to assist beginners learning ES or TEP. Attempting to be as loud as our laryngeal voice was will tighten the very muscles we need to keep relaxed now. Tightening up will affect the fluency, and usually initiates coughing, as this function brings up mucus with deep breathing used for shouting one…word…at… a…time. If you are concerned about not having enough air to complete a word or phrase, remember to enunciate the final consonant for a little boost of air.

Using an amplifier in the comfort of your home, SLP’s office, and at laryngectomee support group meetings are all perfect opportunities to practice speaking into the microphone not over it. Waving the microphone around like an extension of your hand, if you talk with your hands, as some of us do, is non-productive. Your listeners can’t hear you with the microphone at the end of your out-stretched arm!

Your dental health will make a vast difference in your ability to articulate D and T clearly. Take a moment to place the tip of your tongue against your front teeth as if you were going to make a D sound. Then do the same for T. Did you feel the difference of the tongue placement and amount of air pressure in your mouth? This slight difference can be improved with time to heal, practice and paying close attention to what you are doing each time you say things like: “to do”, “tie dye”, “today”. Missing teeth is not only a problem for your basic nutrition, but many consonants will not be intelligible. Your ability to form the T & D or F, S and SH sounds are examples of good sounds to focus on when you practice. Remember the whistle in, “All I want for Christmas is my two front teeth”? Our articulators, teeth, tongue, and lips, play a key role in how clearly we speak.

After the surgery and radiation it is not unusual for the tongue to be swollen. Look into the mirror again, and you may see that your tongue looks like a knotted wad. The sooner you start talking with the electro-larynx, the sooner the exercise of talking will help to remove the edema (swelling) so the tongue lays flat and becomes more flexible. There are tongue stretching exercises I’ve described in my November 2006 Whispers on the Web article. Here is an excerpt:

“1. TONGUE EXERCISE: It is important that you do this in front of a mirror so you have the visual cues. Stick out your tongue as far and as straight as you can. Be certain that it isn’t going off to one side; that it is 'centered'.
Next, try to curl your tongue up to touch the tip of your nose, hold, slowly move it back 'center'.
Then try to bend your tongue down to touch your chin, and back to 'center'.
Go next to your right cheek as far as you can stretch, and back to 'center'.
Finally, go to the left cheek as far as you can stretch, and back to 'center’.

The first time you will only do one or two sets of this exercise to strengthen and flatten you tongue for more flexibility and better articulation. This will also help with water going up your nose because the back of your swollen tongue can close off and force fluid up your nose instead of allowing fluid to go over the back of the tongue and down the hatch as it should. The tongue is the strongest muscle we have, and as laryngectomees we really give this muscle a work out...especially with esophageal speech.”

In “Laryngectomee Speech and Rehabilitation”, Warren H. Gardner, PhD, states while discussing esophageal speech, “Because the tongue has a dual role, first, in compressing and injecting air and then, immediately thereafter, in modifying the ejected air, its contact and positions during movements are of shorter duration than in normal speech.”
Tape recording your speech while reading something aloud, or having a conversation will usually reveal some sounds that are not easily understood by a listener. For beginners who are having trouble using the telephone this will provide a sample of what the person on the other end of the phone hears. Remember they cannot see your facial expressions, or read your lips. Either repeat, or choose another word or phrase until the listener understands the message.

Practice is re-enforcing. It is essential that you are careful to practice the right stuff, no matter which method of speech you are working to improve. Remember, you will know you’re on the right track when it becomes effortless.

 

Elizabeth Finchem
 

 

 

 

 

Rosalie Miles Macrae

By VICTORIA PASSINGHAM – daughter of Rosalie Miles Macrae

It was a glorious, fresh Spring morning.


But there was nothing glorious about the day. It was the day of my wonderful mother’s funeral and the sorrow in my heart weighed heavily as our car drove towards the crematorium. Then I saw the piper and my spirits lifted. My brothers and I knew we had to have a piper playing the bagpipes at my mother’s funeral. And there he was, looking splendid in his regalia, leading the hearse up the tree-lined driveway.


We knew our mother would be smiling at her impressive entrance.The piper was one half of the aptly-named Colchester duo, the Cockney Jocks and reminded me of one of the happiest memories I have of my mother Rosalie. For it was the Cockney Jocks who made my mother’s belated 70th birthday so memorable.


Rosalie wasn’t able to celebrate her 70th birthday four years ago. She was in hospital having tests before her laryngectomy operation the next day. For her, there was nothing to celebrate as her 70th birthday was simply the last day she would have her voice – a wonderful Scottish accent which I am sure wooed many a man over the years!


Waiting for the operation she was scared about her future with no voice but knew it was her only chance of living a longer life. Twelve months on and we gave her a belated birthday party to remember – pipers, haggis and a house full of people she loved and who loved her. Her operation had done nothing to dampen her love of a good party and she happily took centre stage – albeit now with a Servox in her hand.


I then realised that it was the perfect day for my mother’s funeral. She loved Spring with a passion and the daffodils were out in force – I think in her honour. We had decided her funeral was not to be a sad day, but a celebration of a very special life. And thanks to the people who regularly read her column, A Scottish Accent, it really was a celebration.


We had no idea the response we would get from the email we sent out telling people my mother had died. An avalanche of kindness and love is the only way I can describe what happened when I opened my email inbox. Some made me smile, many made me laugh and lots made me cry into my keyboard. I knew my mother had many friends on the Internet from around the world, but I never realised how many. I was truly overwhelmed and have printed them out for my brothers to keep as a lasting memento. I hope you don’t mind, but some of the messages were so wonderful they were just too good not to share and we printed them out and put them on a board for people to read at the wake after Rosalie’s funeral. I want to reply to everyone’s email personally, but I just don’t think I will be able to. All I can say is thank you from the bottom of my heart for the lovely messages you sent me. Rosalie had such a wonderful way with words and it just shows that her personality shone through when she emailed people.


The following extract from the tribute at Rosalie’s funeral goes some way to describe what she was like:

“Rosalie was an independent and free-thinking person who thought of life as an opened-ended journey of exploration and discovery. She was full of energy and will always be remembered for her vivacious personality and positive outlook upon life. Rosalie had a formidable intellect and an insatiable thirst for knowledge, which explains why her house was full of books! Rosalie was a straight talker, leaving others in no doubt whatsoever about what she thought.”

We see the four years after her laryngectomy operation as a bonus – she took several months to get even close to her old self, post-operation, but her gritty determination to communicate won through and she learnt to have a life using a Servox.


My brothers and I had to laugh when we found out her funeral was to be early in the morning – and many of you reading this will know why. You see, those who knew Rosalie well, knew she didn’t do mornings. Her hours were far from conventional, but then she was never one to stick to convention. Whilst her peers were probably tucked up in bed by ten, Rosalie was just warming up to a night-time of “silver surfing” with her many friends on the other side of the pond – aka the Atlantic. She would then finally go to bed not much before dawn.


It is only now she has gone that we will truly appreciate just what a special person she was. She was - and will always be remembered as - a true maverick who shunned convention. And for that, it means her children were lucky to have a mother who was never boring and brought us up to see the often quirky side to everyday life.
Going shopping with her was always an event with some incident. Our mother was never one to just go into a shop, buy what she needed and leave. Oh no, not by a long way.
By the end of visiting a shop she had usually interviewed half the staff and had a potted history of their lives which she then remembered when she returned another time.
Looking back, this was an often cringe-inducing, deeply embarrassing experience as she often gave a far too personal potted life history of us too!! But now we can see that she often made the day of the people she talked to. I bet they wished they had more customers like her, as opposed to the anonymous majority who barely pass the time of day.


Rosalie's thirst for knowledge did not stop at her family and she was always a mother who wanted to know what her children and grandchildren were up to. She was always more interested in other people’s lives than her own. She was a true journalist through and through.


The surreal conversations we have had together with our mother over the years are too many to mention. Just two months ago we were around a table in hysterics during her birthday meal in an Indian restaurant. We were taking the mickey out of each other's presents and our shrieks of laughter were enough to have cleared the place. Centre stage, as per usual, was Rosalie, making mischievous comments to wind her children and grandchildren up. They had the desired effect and as the table descended into another playful row, she sat back and smiled. Job done.


But then our family get-togethers are often boisterous affairs - loud, very loud, with everyone talking at once. Our mother's laryngectomy operation did nothing to quell her love of talking and we shall miss the buzz of her Servox machine which was ever-present at any family gathering.


She loved her grandchildren dearly and will forever hold a special place in their hearts. Their Granny was a one in a million who they could talk to, confide in and share a joke with. She may not have been a conventional grandmother, but the children would not have it any other way. From her whacky Christmas wrapping to her funny stories from the past, she was one special lady.


She was a successful journalist who was lucky enough to interview a host of celebrities including Elvis as a GI and Paul Newman on his honeymoon with Joanna Woodward.
But to her children she was our special mother and we loved her.


Gone, but never forgotten.

 

 

 

 


God and the Mystery of Creation

 


In the March issue of Whispers on the Web, I wrote an article titled, “The Day (or Night) I Saw God”, about the different hallucinations and sights I saw while in hospital, under heavy chemical treatment. In that column, I tried to explain the actual experience; this time, I would like to explain what happened afterward.

 

A.

The moment I came back to my senses and was able to move, I began to write about and draw the visions I had 

Searching for God, 1998

during my crazy trip. One page is crowded with strange little creatures. The inscription reads: “Trying to trace the image of God”. It was clear to me then, that the entity I saw was God. It was a small, unidentifiable, frightening creature. I felt that I must catch the look of it on paper before it disappeared forever. I tried hard, drawing one after another but it did not seem to work because the creature was so elusive. As you can see – every one of them looks different.

A few years later, I did a new series of drawings about the image of God. I used the original sketch book page as a reference, but tried to re-invent the creature. My only guide line was that it should look like something that doesn't resembles anything I know, but of course this is not possible. We can only create within the limits of what we see and know.

The bible teaches us that man was created in the image of God. When I look around and see what we, humans, are doing to each other and to our planet, I sometimes think that our real image, the hidden one, is closer to the one I saw than to the one we believe is the image of God.

 

 

God Exists, 2005 God in His Sky, 2005 God, 2005

 

 

B.

After each radiation treatment, I used to go to my studio, just in order to be there. Being in my studio recharged my

Microscope Image

Suspicious Symptoms

Detail 2

batteries and brought life into my veins. I was exhausted, but I knew I must paint, yet I could not think of an idea or subject. Perhaps still-life, something I hadn’t done since my long-ago art school days, was a good possibility. Just to do something that employs eye and hand skills and does not demand more complicated efforts. I looked around and spied an old Histology book on the floor. It was full of black and white microscope images of inner body tissues. I couldn't understand the explanations – the book was in Italian – but the images were fascinating. To me they were beautiful abstract compositions, and I decided to use them as my still-life models. I didn't really copy them,

Suspicious Symptoms, 1998-1999

Man Burning Flag - Newspaper Clip, 1999

Suspicious Symptoms - Detail 1

but I painted the main features and shapes, and created colors that I thought expressed what the image felt like to me. I did it without much thinking, and I didn't think I was doing something that would serve my art in any significant way. The paintings were done on simple cardboard sheets, all in similar size. When a painting was finished, I attached it to the wall. After a couple of weeks, the wall was covered with rows of paintings, and I felt that something had started to evolve. I didn't know what it meant, but I knew it wasn't meaningless any more. From an unfocused starting point, I had entered a vital process of creation, engaging all the same kinds of deliberations and choices that characterize my normal way of work.

One day I came across an image in the newspaper that caught my eye. I saw it upside down, and didn't understand what it portrayed, but the shapes and colors seemed to be similar to those I took from my histology microscope imagery. I painted this one in the same way I painted the others, but when it went on to the wall it was different. It was a scene from real-life – a man burning a flag – and its presence among all the inner-body tissues, suddenly gave the whole wall a new direction and meaning. It wasn't only about shapes and colors any more, but, for me, a statement about illness, not my private one, but of the region in which I live, a hopeless sick part of the world where people kill each other in the name of God and biblical promises.

The work, “Fire”, was the last I did in this series. It summed up the process described above. Dr. Shlomit Shaked, the curator of my solo exhibition at the Tel Aviv Museum of Art in 2004, described it this way:

"….The tongues of flame merge with the tissue of blood to form a muscle of sorts that rushes forward as an epidemic that has gotten out of control…an experience of losing one's foothold, loosing control – of the fire and its generator who has become the victim of the dragon he has created."

 

 

Fire, 2004

 

Avraham
 

 

 

 

 

The Difference a Year Makes!

Early Feb, 2008

 

Across the Internet, I heard from Jack, who had to make a decision between surgery or chemo/radiation.  He didn't want someone to make that decision for him but wanted to know where he could find support and advice. You see, he was familiar with throat cancer.  His wife's brother had the same choice, choose radiation and, while it may have been the right decision for the throat cancer, he died of lung cancer.  Jack already knew he was going to choose the surgery and it was to be immediate. And they were scared.

His surgery was the next week. It took me six weeks of answering questions and recommending WebWhispers before he was up to dealing with it and did, in fact, join us.  His comment at the bottom of his application was: "I have been corresponding with Pat Wertz Sanders and Pat said I needed to join WebWhispers."  That's trust!

Email received Mar 8, 2009

 

Pat,

Thought I would stop a moment to say hello, the weather here in Michigan has been cold and rainy but I just heard from my daughter Kathy, who lives with her husband and my two grandchildren in the Jacksonville, FL area.

 

 

Jacob, soon to be ten years old, is so very bright that on his own, he found a dinosaur egg in a rock. I believe good fortune will follow him where ever he is! Jacob is funny and full of laughter. Kattie, his sister, is soon to be eight , follows him around but stands her ground, when he gets too rough. Kattie is bright sunshine but quiet. She and Jacob, like a pair of gloves, belong to each other and do every thing together, They sent me pictures of their new puppy that they share and play with, also some pictures of them playing on the water edge at Jacksonville beach along with some others from last Halloween.


My wife, Elaine, was out shopping when I received the pictures via email so I printed all the photos and scotch taped them all over the kitchen, everywhere, and when my wife came into the house I could hear her delight of seeing the new pictures of our grandchildren. Yes, a cold rainy day up here in Michigan , but being made warm and sunny by some bright pictures.


Pat, thought I would share this with you and maybe bring some sunny weather your way. Thanks for your help when I needed it and thanks for the wonderful helpful website that WebWhispers has brought to us all. 

Just Jack

Jack Jkac (laryngectomee as of Feb 11, 2008)

Reach us for this space at editor@webwhispers.org

 

 

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 45 new members who joined us during March 2009:

 

Sheryl Avery
N. Ridgeville, OH

Bulent Batir
Izmir, Turkey

Allan Blumhagen
Alberta, CAN

     

Lydia B. Bradbury - (Caregiver)
Tulelake, CA

Paul W. Bradbury
Tulelake, CA
Shannon Brickson - (Caregiver)
Beloit, WI
     
Sidney Burbage
Gardendale, AL

Sarah Campbell - (SLP)
Lexington, KY

Lloyd W. Carroll
El Reno, OK

     
Randy Churchill
Hollister, CA
Anthony Cola
Westerville, OH
Braide Coplestone
N. Taranaki, NZ
     
Rosemarie Daley
Boise, ID

Carolyn Demarco - (Caregiver)
Westerville, OH

Lisa Didomenico - (Caregiver)
Whitaker, PA

     
John Drescher
Pawtucket, RI

Ronald B. Finn
Stuart, FL

Patricia A Fisher
Pontiac, MI

     
Heidi Friery - (SLP)
Lewisburg, PA
Laura (Givens) Goldman - (SLP)
Jacksonville, FL
Albert E. Hammel
Flint, MI
     
Jeanne Harkins -(Caregiver)
Overland, MO
Ron Hess
Whitaker, PA
John A. Hudlow
Des Moines, WA
     
Randy Jenkins
Warren, MN
Rick Kitchen
Shefford, Bedfordshire, UK
William Larson
N. Las Vegas, NV
     
Caroline Mackenzie - (Caregiver)
Kent, UK
Theresa Manning - (Caregiver)
South Royalton, VT
Danila McAsey - (SLP)
Peoria, IL
     
Michael McMurray
Tyrone, PA
Donald R. Mitchel
Blue Island, Il
Pam Niman
Beloit, WI
     
Ayuba Omotunde
Lagos, Nigeria
Joe Plasket
Atco, NJ
Vikki Price - (Caregiver)
Boise, ID
     
Sandra (Sandy) K. Quinn - (Caregiver)
Blue Island, Il
Buddy Roufs
Mapleton, KS
Camilya Siever - (SLP)
Florence, KY
     
Nancy Sullivan
Jalifax, MA
Denis Ross Thompson
Wrightsville, PA
Alicia Vargas - (Vendor)
Carpenteria, CA
     
Jorma Wakkila
Newton, NJ
Barbara Watson - (Caregiver)
Ocean Township, NJ
William Watson
Ocean Township, NJ

 

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