March 2008

 


 

 

Name Of Column Author  Title Article Type
News Views & Plain Talk Pat Sanders A Good Way To Start The Day News & Events
VoicePoints  Ed Stone After My Surgery Education-Med
Web Whispers Columnist Sunny Bakken Dancing With Ron Experiences
Guest Columnist Marona Hewitt Strokes Can Be Sneaky Experiences
Between Friends Donna McGary Funny Experiences
Practically Speaking Elizabeth Finchem TEDPA And You Experiences
A Scottish Accent Rosalie Macrae To Enjoy Yoghourt & Bananas Experiences
New Members Michael Csapo Welcome News & Events

 

 

 

 

A GOOD WAY TO START THE DAY

 

Sometimes when I am looking back into my old email files, I read messages sent to the list back when I got up in the morning early, turned the coffee on, and headed for the computer to see what everyone had to say. This was one I found the other day and it describes so well how I felt at being able to be with my friends to start every day that I thought I would share it with you.

Happiness is:

Waking up each morning to a new adventure and/or accomplishment.

A prosthesis that doesn't leak.

Knowing that all of you are there for support, advice, and the great sense of humor that brightens my day.

Working each day to better my speech and find new ways to help others with this voice-beyond-voice.

Talking in sign language with my friend and caregiver.

All in all, life is great and happiness is easy, it starts with a smile.

So keep smiling.

Dick Scheele, Port Townsend, WA (from the WW List 1998)

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals [© 2008 Lisa Proper]

Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S (LisaMProper@comcast.net)

 


"NO ONE SEEMS TO CARE ABOUT ME AFTER MY SURGERY!"

 

This year, 2008, marks my 40th year of involvement in Laryngectomee Rehabilitation. Through the years I've heard many complaints. The most common one centers on the difficulty laryngectomees encounter in finding knowledgeable and experienced clinicians to help meet their individual rehabilitation needs. In fact, some patients seem unable to find a professional who has even a nodding acquaintance with laryngectomee rehabilitation. The problem pivots around a lack of training Speech-Language Pathologists might receive during their graduate studies.

Why do universities fail to provide training in laryngectomee rehabilitation?

 

Laryngectomees represent too small a population.

Several inter-related issues seem to persuade department administration to omit or to slight such training. One involves the fact that laryngectomees represent a very small part of the communicatively challenged population. Laryngeal cancer occurs in approximately 12,000 Americans per year. Most, 75%, are treated by radiation and/or chemotherapy. The remaining 4,000 laryngeal cancer patients who receive a laryngectomy is underwhelming compared to the estimated millions of communicatively compromised adults from other causes. Thus, SLPs who depend on laryngectomee rehabilitation as a means of gainful employment would have a major disappointment.

The work-force doesn't present sufficient need for formal coursework.

This lack of patient demand dissuades administrators from emphasizing laryngectomee rehabilitation in their course curricula. Of the 127,000 Speech-Language Pathologists in the United States, less that 500 (0.41%) are involved in the area of Voice Disorders and Laryngectomee Rehabilitation. Probably less than half of those practitioners might see laryngectomees. Students are hard pressed to complete their required and other elective coursework, without taking a course which they would not put to use. A department chairperson posing coursework (that might potentially benefit only two out of one hundred students) in laryngectomee rehabilitation to their Dean of Graduate Studies would raise a question as to the degree to which the chairperson was in touch with reality.

Financially, training programs can't afford the cost of coursework in laryngectomee rehabilitation.

Training programs are funded according to the number of instructional hours provided from the tuition they create. A course filled with 30 students raises twice as much money for faculty salaries and other expenses than one with only 15 students. Comparative costs per student for the latter course are twice that of the first. Thus, the cost of an elective course that might attract one or two students is relatively astronomical and not justifiable.

Lack of laryngectomized patients for student practicum is a deterrent to university programs.

Except for university programs in very large urban communities there is an insufficient laryngectomee patient population with whom students may develop supervised experience during clinical practicums. Consequently, supervisors tend not to have experience in laryngectomee rehabilitation. Thus, even if a laryngectomee presented him/herself for help, the patient would have little assurance of quality services.

Impact of laryngectomee supplies needed on university programs.

Ministering to the needs of clients using esophageal voice aided by tracheo-esophageal prostheses would involve several problems for university training programs. The first would involve addition of medical-type equipment such as light sources, suction devices, and special instruments not typically found in university based programs. Second, the university based programs would have to develop inventory of artificial larynges, tracheo-esophageal prostheses, hands-free valves, and related supplies that might approach a $10,000+ inventory. This obligation of funds would be tapped only on rare occasions, in addition to encountering insurmountable billing issues.

The laryngectomee's plea for ready access to personnel trained to meet their needs is heartfelt by the profession. Yet, developing a large cadre of such individuals through university training programs cannot be a reality. It hasn't happened, and it just isn't likely to happen in the future.

Laryngectomees can take active leadership in encouraging and helping establish alternatives to university training for speech-language pathologists.

 

IAL Voice Institute

 

Laryngectomees' involvement in rehabilitation has a long history. They, in concert with a few interested SLP's established the IAL Voice Institute which has trained most of the SLP practitioners working in the field today. Although the intensity and scope of the Institute has changed through the years, it remains the foremost force in training clinicians for laryngectomee rehabilitation. Usually, the program of the institute promotes equal attention to artificial larynx use, development and enhancement of standard esophageal voice, and esophageal voice aided by voice prostheses. Most often, a session is held at a medical facility for trouble-shooting issues of prosthesis use.

Individual laryngectomees can support this effort by first enrolling as Voice Institute Pupils (VIP's) to improve their own speaking skills in "hands-on" sessions held daily. Such involvement also enables SLP trainees to gain experience in delivery of services as they provide supervised assistance in these sessions.

Second, they can lobby the IAL Board of Directors to continue and increase it's cooperation with, and support of, the IAL Voice Institute.

Third, laryngectomees can encourage their own clinicians to avail themselves of participation in the Institute as Speech Pathology Trainees (ST's) and of the input most faculty members of the institute are willing to share after the trainee has graduated.

 

State Organizations

 

Many state organizations of laryngectomees offer, as part of their annual meetings, access to seasoned clinicians for individualized attention to their specific communication needs in the form of "therapy sessions". Thus, the laryngectomee has access to knowledgeable clinicians and SLP's are always encouraged to attend these meetings to lend assistance and to gain information and experience working with laryngectomee-related issues.

FLA

Several of these "local" associations offer training opportunity for interested SLP's held parallel, or concurrently, with the agenda of the meeting. The Florida Laryngectomee Association has a 25-year history of a stated mission of training SLP's. It was spear-headed by the efforts of Dr. Robert King, otolaryngologist; Dr. Paul Moore, speech pathologist, and Jeanetta Jones, a self-trained laryngectomized speech instructor. Initially, a two-week institute was held exclusively for SLP trainees and laryngectomees aspiring to be instructors. The first session was held in the Fall immediately before the Fall Meeting of FLA and the second session was held a week just before the Spring Meeting of the organization. Both sessions featured demonstration therapy as well as clinical practicums with laryngectomees who attended primarily for self-improvement. Reading assignments, with tests over the material, were assigned during the several months separating the two sessions. This effort closely resembled a two-hour university course with practicum. Through the years the scope of the institute was found to be too demanding and it was shrunk to a one week-long endeavor. Apparently due to having sufficient trained clinicians in Florida and with changes in reimbursement, etc. such efforts seemed to have outlived the demand.

Vic Baird Graduate Student Training Program of FLA.

The program hibernated for two years and now has been resurrected, in part, focusing on exposing graduate students in Florida to an intensive 2 day exposure to laryngectomee rehabilitation. Students are recruited from the ASHA certified training programs in Florida to participate in a program that is designed to introduce them to: the laryngectomy; the options of speech after laryngectomy; teaching the use of - Artificial Larynx Devices (ALD), Standard Esophageal Voice production, and production using a TEP; introduction to many distributors of laryngectomee products and to those products; as well as learning about being a laryngectomee through twice-daily speech training sessions for laryngectomees (and students) and various social activities. It begins the afternoon and evening preceding the Annual Meeting of the FLA, and continues during that meeting with programs designed to be educational to both students and laryngectomees. Training ends with a pencil-paper test of material presented during the sessions as well as a proficiency test in the use of an ALD.

Florida is just one of several states attempting to provide alternatives to formal university coursework in laryngectomee rehabilitation. Others have included New Jersey, California, Texas and North Dakota.

So what might be done in areas where there is no state organization that could spear-head a state-wide weekend meeting?

Members of WebWhispers are a gung-ho kind of people. What if WebWhispers were to form an advisory board to develop:

A cadre of professionals,

A conceptual curriculum,

Operational procedures

for their members to take to universities in their own states, offering to provide a week-end introduction to laryngectomee rehabilitation at a cost the university might find affordable.

Very quickly the United States would be blanketed with pre-professionals who had at least a nodding acquaintance with laryngectomees needs. They would be introduced to resources to seek as the need arose. They would have resources identified.

True, it would not be an effort that resulted in a large cadre of WELL-trained and experienced professionals to whom laryngectomees might go. None the less, the cause of laryngectomee rehabilitation would be advanced; laryngectomees might not validly say "There is absolutely no help for me in my community." If this idea turns-the-crank of even a few of you, I hope you will let WebWhispers know your interest. Doing nothing results in bleak returns for laryngectomees and fails to dry the tears that come from being isolated and away from professional help.

We can turn the plight of the not served and underserved laryngectomees around!

R.E. (Ed) Stone, Jr., PhD
 

 

 

 


 

Dancing with Ron

Sunny Bakken


Sunny Bakken lost her husband, Ron, in November 2007. She is coping, writing their story, continuing to work as a volunteer with WebWhispers and staying in touch with the friends they made here.

MEETING – June, 2000

Ron was a pretty independent guy, single 20 years, retired Navy Chief. We had both been married before. Both of us said, "Been there, not sure if I want to do it again." Ron was country all the way. Knew all the "old" country music and was a great dancer. I was into line dancing and newer songs but I loved dancing with him and he taught me to two-step. He would ask, “Who’s singing that old song?” I would answer, “I'm from Hawaii; not a whole lot of old time country on the radio.” And, we would laugh and dance.

He had been battling a sore throat for some time and another doctor confirmed he had Squamous Cell Carcinoma on his false vocal cord. Options were surgery, maybe not preserving the vocal cords, or radiation and he opted for radiation, a massive amount of 70 treatments. Not being his wife, being unable to talk to the radiologist about problems was difficult. He was a small guy to begin with and I could see he was losing a lot of weight but he fought this until he realized that he could no longer swallow and was living on pain meds. The doc decided he had to have a stomach tube and it was placed as an out-patient procedure. He was so sick tht night and the home nurse never showed about the tube. It was a house of horrors and the next day Ron was in the hospital, where they found his system was shutting down and every level was below normal. He was in for a week, and the first evening he was home, he had a formula pack on a pole (like you see IVs hang from); it had a machine that was automatically "feeding" slowly. A home nurse came in and showed us, his son, who lived with him, and me how to prepare his meds for his tubes, change the formula bag, set the machine. He was on his way to finish radiation and, then, recovery. But the after effects of the radiation were terrible. No one told us the problems that would crop up. The burns, inside and out, the loss of his saliva glands, dry mouth, the change in taste and eating.

We got married in May 2001. Things were good, even great. Still dealing with the radiation effects, but scans were good, nothing showing up and we had a good year and half. He loved road trips, we took one across country to his home state of North Dakota, and went to Minnesota to visit his mom and sis.

By late 2002, his throat was bothering him and he was not eating much, mostly oatmeal, cream of wheat, soup - what he could tolorate. Finally, after much bugging from me, he went for a scan in March and the cancer was back in the same place. We saw a ENT (ear nose throat); prognosis was not good. A total laryngectomy was recommended and the surgery was explained. When we left the doctor’s office, we were both in shock that he was going to have major surgery and no voice.

We headed for a local casino's coffee shop there in Las Vegas, to have something to eat, to talk, and to contemplate. While walking toward the coffee shop, we saw a gentleman walking toward us with what looked like a speaking device. The same thing the doc had just shown us a picture of. We looked at each other and Ron said, "I'm going to talk to him." This gentleman had been a laryngectomee for 20+ years. He told us not to worry, you may not have a voice, but you can still make yourself heard! Once we got used to the sound of his EL (electrolyarnx ), it was easy to understand. Talking to this man must have been a gift, because some of our fears eased.

On April 12, 2003, Ron went in for surgery with a voice and 4 hours later he had none. He recovered well and came home 4 days later. Home care showed me how to care for him. Ron again had a stomach tube but not for as long this time. Soon, he could drink the formula. That kept his weight normal and the nutrition in balance. He would still try to eat once in awhile - eggs, soup, things like that.

A speech language pathologist (SLP) made visits to the house to teach Ron how to use the EL. She was another gift for us as she started meetings with other laryngectomees in the area, ones she had treated. Soon a laryngectomy club was started and is still going strong. The club members would go to nursing schools to explain exactly what a laryngectomy was, how the breathing system has changed and what it means to live a life as a "lary". Not all of this was easy for Ron. He was very embarrassed at first to talk in public. People have a tendency to do a head swivel when they hear this strange sound but he got better and more confident. Things were different but we were very happy.

Before his laryngectomy, I did some searching for information. I found a wonderful web site, WebWhispers, a nonprofit group, which was founded by a laryngectomee. We both became members; it had an email list and a website for information. A wealth of help and shared experiences from others, who have been larys for years, was available and this email list had people from all over the world.

August 2004, scans done, as routine. A spot was on his right upper lung and on his tongue. To our horror, the biopsy showed cancer - the same type. Chemo started. Six weeks, once a week. He did well, no sickness and they monitored him closely.

Ron was not a vain man except about his hair. He had dark, thick hair. Before chemo, he got a buzz cut. One day when I came home from work, he had a fresh razor and said you have to shave my head. This was spookier than taking care of his surgery site.

Scans were done again and the spot on the tongue was gone, but the cancer in the lung, while it had shrunk, was still there. Another round of chemo was done. This time he lost every hair on his body. They say the hair comes back differently and I've seen the effects on others. Ron's did, thinner and straight as a stick. He said, "Oh, well, guess I can't be vain about my hair anymore." He always had such a good outlook on everything.

February 2005, scans. Wow, everything looks clear! With cancer, they progressively move the scans out - 3 months, 6 months, a year. Next scan in June, the spot was back on the lung, bigger. It was too close to the area radiated before and the chemo hadn't worked, so surgery was scheduled. Ron was worried more about this surgery than the laryngectomy but the surgery went well, no cracked ribs to get to the site. Hospital stay was not a good thing. He picked up an infection, which kept him hospitalized 3 extra days. He came home, somewhat sore but glad to have it over and, again, started healing.

One of our road trips had been to Southern Oregon. I loved it and so did Ron so we talked of moving there. As long as the snow didn't stick, he could deal with the occasional snowfall. He put his mobile home up for sale in September 2006, not thinking it would sell fast. Within three weeks he had an offer. We weren't ready to move yet, so a short term apartment that would take the dog was found. I continued to work and Ron and his son took a trip to Oregon in October to check out places. The second day he called me at work, found a mobile park, out in the country. Would I like that? It was a small community way out in the country with deer and rabbits. That night talking to him, he had also found a mobile home, a model. I looked it up on the Internet and it looked perfect. Arrangements were made and notices were given. People at work couldn't believe I let my husband pick out a house without my seeing it. That's the thing, we thought so much alike and he was right - I loved the house.

December 2005, we made our big move to Oregon. We got here in the middle of one of the wettest winters they've had in years and were starting to get settled in, when a neighbor stopped by to introduce herself. I will forever be grateful that she did as Sue and Gary (her husband) became my rock later. During the spring and summer, Ron and Gary built a small deck off the carport. We would go out in the morning and enjoy the morning sun and, in the late afternoon, we watched the sun set over the mountains.

Part 2, May 2008:

MORE CANCER AND WORKING WITH HOSPICE

 

 

 

 

 

Strokes can be Sneaky


By Marona Posey Hewitt


Joe kept nodding off in church that Sunday a couple of years ago. 'Bored again,' I thought for it takes a lot to keep his interest when the preacher gets long winded. He liked the speaker but he wasn't hearing anything new so his head was down and his eyes were closed. I was nudging him to wake up every now and then. He nodded off again. Catnaps he calls them. This time it was different.

When we got up to leave he had trouble speaking. He garbled a few words then headed to the aisle and out to the truck and got into the driver's seat as usual. We had already discussed where we were going to eat and he immediately headed the wrong way. "Are you headed to the restaurant for you are going the wrong way," I commented. He couldn't answer. He couldn't get the words he was speaking to make any sense. He seemed confused and didn't know where he was.

'Something is wrong,' I thought and he is driving!

"Repeat the Lord's prayer," I requested looking at him driving down the road. He couldn't, he couldn't even get out the first sentence, so I immediately asked him to pull over the truck and get out and let me drive. I headed straight to a hospital about five miles away. By the time we got there his speech was clear and he laughed at my insistence that he continue into the emergency room. He knew where he was and he felt great and wanted to get something to eat. I kept walking and he had to follow because I had the keys to the truck and I was going into that hospital with him in tow. We went in and I told them about his symptoms and the nurse immediately brought him back and did a blood pressure check. She took it three times then she asked him some simple questions and he answered them correctly with clear speech.

She left, apparently to consult a doctor and when she returned they escorted him immediately to room in the back that looked like an operating arena. They put him on a bed and covered him up and told him not to move and not to raise his head. They left a nurse with him and took me out into the hall. "Your husband's blood pressure is 210/115 and we suspect he has had a stroke. He is going to be admitted to the hospital for further care and if you want to call in the family I would recommend it."

Yikes, a stroke. We hadn't planned on this. We had things to do and trips to make and a life to live together. I went back to the room and there he was cracking jokes and remarking that he didn't know what all the fuss was about, he was just fine. He wasn't.

The symptoms of a stroke can be sneaky, come and go and may last for a few minutes or hours. Some of the symptoms can be the same as other aliments so it is important to do some simple things to recognize a stroke. If you experience any of these things call 911 and get immediate treatment. Here are the symptoms:

Suddenly feeling weak in an arm, hand or leg
Cannot feel one side of your face or body
Suddenly cannot see out of one eye
Suddenly have a hard time walking
Cannot understand what someone is saying - confusion
Feeling dizzy or losing your balance
Having the worst headache you have ever had
Garbled speech - cannot repeat a sentence

Go to the American Stroke Foundation website at www.americanstroke.org for their listing and further information.

Joe had suffered a similar garbled speech incident about two weeks before this one. His daughter witnessed it but they laughed it off and the slurring of his speech lasted only a minute or two. There was no headache, no numbness or other problem. After all he was 74 at the time and older people are supposed to have problems.

The truth is a stroke can hit people of all ages, although increased age is one of the risks you cannot control. Other uncontrollable high risks are being male, Afro-American, and having a family history of stroke.
Some risks can be controlled with medical treatment and life style changes. If you have high blood pressure, get it treated. The drugs that control hypertension are on the WalMart $4 a month plan. I know because I take them and pay only $4 a month. You can afford that and that one medication alone may save your life.

Other risk factors are: obesity, diabetes, smoking, high cholesterol, heart disease and previous TIA incidents. Let's be truthful, we don't run out and lose that extra 50 pounds but we can stop the cigarettes, get treatment for high cholesterol and diabetes. Those treatments are affordable and if you want to lower your risk you need to take advantage of what is out there. I reduced my cholesterol from 230 to 165 in a year by taking the cheapest statin on the market. I requested the cheap drug and my doctor was glad to write a prescription for it. Easy, simple and I didn't change my diet.

One of the risk factors is a previous TIA incident. A transient ischemic attack is a "warning stroke" or a "mini stroke" that produces stroke like symptoms but there is not long lasting damage. Most strokes aren't preceded by a TIA however if a person had one he is about a third more likely to have a major stroke within a year or less. TIA's have to be treated to prevent that major stroke from occurring. Strokes occur when there is interrupted blood supply to the brain. This can be due to ischemia (lack of blood supply) caused by a blood clot or embolism that blocks the artery or due to a hemorrhage that causes the artery to burst and blood to leak out into the brain. This is an immediate medical emergency and if not promptly diagnosed and treated, neurological damage and/or death can occur.

What is the treatment for strokes and TIA's? If you have a stroke you must be given a "clot buster" but it must be given in supportive care because there are risk factors. The drug and treatment must be given within four hours or less to lessen or reverse neurological damage. Secondary prevention drugs are aspirin, blood pressure control medication, statins and, in some patients, anticoagulation drugs are necessary.

How do you recognize a stroke? If you suspect a stroke first ask the individual to smile. Second, ask him to raise his arms then ask him to repeat a simple sentence or recite something that would be familiar. Then tell them, "Stick out your tongue." If that tongue is sideways in their mouth and they cannot raise their arms, talk coherently, or smile, call 911 and get medical help immediately.

What happened to Joe? He was admitted to the hospital and several doctors descended on him at once. Immediately they got his blood pressure down and did a MRI to see what was going on then treated him with the "clot buster." They put a heart monitor on him and the next morning they realized he had an abnormally low heart rate and was having episodes of atrial fibrillation that was causing his blood to pool inside the heart chamber and that was creating small blood clots that were being pushed out into circulation and going to his brain and possibly other vital organs. These problems resulted in a pacemaker being installed then he was put on a mild anticoagulant and he takes an aspirin a day and a drug to calm his heart, along with aggressive blood pressure control.

Joe has not had any more problems and he feels great and we are back to traveling and a full schedule. In fact that pacemaker has caused his energy levels to increase and he only nods off in church now when the preacher really is boring. We are thankful that the few minutes of garbled speech and confusion happened at a time he had me there with him and we got help.

(Marona and Joe are long time friends of mine and have been on almost every one of our WebWhispers cruises with us. Pat Sanders)

To read more about the personal experiences of a laryngectomee's stroke and rehabilitation, our Whispers on the Web author, Vicki Eorio, wrote a series that started in our September, 2007 issue. You will find them under "Vicki's Midnight Train From GA".

 

 

 

 

 

FUNNY

 

I received one of those “funny” e-mails from a dear friend the other day.  You know the kind I mean…they circulate through cyber-space with impunity and most are pretty forgettable. This one stuck in my craw.  It was kind of funny but mostly it was disturbing.

It was called “Why Old People Rock” and was a series of snapshots of old people.  Some did show “old people” who rocked…like the proud woman in her PJs  standing in her living room with a shotgun in one hand and a dead varmit  in the other.  I especially got a kick out of the rosy cheeked grandma with two fellows, who I bet were her sons, on either side as she sported a paper hat that said, “Will Knit for Sex”. Those were joyful portraits capturing spirit and strength.  There were others, like the couple facing the camera head on giving the universal sign of disdain, but they were not what bothered me.  What bothered me were the photos taken on the sly.  Not the ones where seriously cool old people smiled into the camera and said ‘This is who I am and I am OK with that”.  What bothered me were the sneak attacks on fat old men with droopy underpants and skinny old women with dubious fashion sense.  

I pride myself on my sense of humor and I do not think I have missed something here.  Some of these were not funny; they were cruel and stupid.  I know for a fact that the friend who sent it is neither cruel nor stupid; actually he is both bright and kind, but he missed it.  He is not alone.

For those of us who make fun of everything and everyone who crosses our path…whose sense of humor tends toward the bizarre and the esoteric, nothing is off limits.  Except that which is off limits.  And what is off-limits is very personal.  And sometimes surprising.  My son and I are big fans of Dennis Leary.  He is vulgar, brash, rude and very funny in a sick kind of way that not everyone appreciates.    He takes no prisoners and does a riff on smoking and tracheotomies that is funny in a juvenile kind of way.  But it is not cruel because he is not saying look how ridiculous those people are, he is saying, look how ridiculous I am.  I am you…we are all foolish.

What is off limits to me is making fun of people who have no chance to laugh with you.  There are people who were born with a severely compromised sense of humor.  They appear to be normal in every other way, but their funny bone just doesn’t work.  I am not talking about these people, tragic souls all. 

On the other hand, I don’t think anyone can turn a child’s death into a funny story nor will the descent of a bright and witty mind into oblivion ever be good fodder for a joke.  There are moments of humor and insight in both, but. let us be honest, neither one is a laughing matter.

I do not  think gratuitous examples of  “Why Old People Rock” is all that funny because, having spent a fair amount of time with people actually growing old, I have learned it is actually not all that fun, even under the best of circumstances.  It is not, as they say, for the faint of heart.

However, you do need a healthy sense of humor to survive aging and all the other trials and tribulations of life and even death.  I think one of the best antidotes to all of this messy business is the ability to laugh long and loud at one’s self.  But it has been my experience that laughter at someone else’s expense is neither therapeutic nor satisfying.  It always leaves me with a bad taste on my tongue and a nagging suspicion that God will get me for that (and She invariably does!)

From time to time there have been discussions on the List about how larys are portrayed on TV and in the movies.  Recently I happened upon one while channel surfing.  I don’t even remember what show it was, but the main character was in a bar/restaurant complaining about the “smoking police” and how smokers are social pariahs nowadays.  The guy next to him is smoking and as he turns to get up and leave, he whips out an EL and says “Tell me about it.”  Stupid and inaccurate since the guy clearly wasn’t a lary (he was smoking through his mouth).  It got a laugh, anyway and I wasn’t offended except by the inanity of it.  The point wasn’t to make fun of the guy using the EL it was to make fun of smokers and their addiction.  Something most smokers agree IS funny in a bleak and dark way.

So here’s to grandmas who will knit for sex and larys who laugh out loud even if we do sound like that old cartoon character Har De Har Har.  You know, Mom was right, it is not nice to make fun of other people, but it is very nice indeed to make fun of oneself.

 

 

 

 

 

TEDPA and You:  Making A Difference

 

What could be more practical than “free” communication devices?  We all know “there is no free lunch”, so what’s the catch?  If you look at your telephone bill you will see a line item called “Relay Service & Communication Devices Fund”, or something similar.  The charge may be pennies; usually less than $0.10.  My phone bill charge is $0.20 for “911 Service”, which makes my $0.04 for the Communication Devices Fund look like a bargain percentage wise.  Few people read, understand, or ask what Ma Bell’s list of little charges is for.  Let me fill you in on some little known help that is out there for you.

My experience with telephone company “loans” of electro larynx equipment began in 1987 when I was teaching alaryngeal speech at St. Vincent’s Medical Center, Los Angeles, CA.  This was before licensure laws went into effect.  At that time, I was able to call the local telephone equipment office in Hollywood, and tell them what my student needed.  An application was filled out and signed by an SLP or ENT, and the equipment was delivered at no charge the next week, provided he or she had a phone line.  As people asked me about this program I dug into its history a bit.  Although I was in LA, I was unaware of what was underway statewide with the help of laryngectomee leaders who were CAL members and officers.

One man stands out.  Ray Disinger worked for AT&T.  He was a laryngectomee and was married to Mabel Disinger, who served as IAL President from 1983-85.  She was a laryngectomee who had returned to her profession as an RN using a Western Electric electro larynx. They were both very involved in local, state and national laryngectomee support.  Ray lead the way for CAL to go to Sacramento, CA to support a State Senate Bill requiring the phone companies to include electro larynxes in their loan programs.  Previously, only the deaf were provided with the TDD devices, now call TTY, and Relay Services.  Those in power at that time were finally convinced that the electro larynx provided a way for laryngectomees to use the telephone.  Follow the money.  While providing a service to laryngectomees the phone companies stood to gain more customers.  Ray Disinger was one smart businessman.

Soon there were Distribution Centers located around the state. The DDTP, Deaf & Disabled Telecommunications Program, grew to include not just deaf, but hearing, speech, vision, mobility and cognitive disabilities as well.  Devices of all sorts were made available on loan to telephone company customers.  “Free” meant on loan for as long as you lived in the State of California.  “Free” was made available by all the nickels and dimes that poured into the disabled trust fund, which amounted to millions of dollars by the late 90s.

In addition to the Relay Service Operators, a new program was launched to assist those with speech impairments called “Speech to Speech”.  Specially trained operators listen to the speech impaired and relay verbatim the message to the person on the other end of the call.  The operator may not participate in the call other than repeating exactly what was said.  This service has helped those with weak voices due to MS or CP, as well as other impairments; including novice electro larynx users. 

In 1997 I was hired by the Deaf & Disabled Telecommunication Program to help promote the “Speech to Speech” Program.  Instead, I ended up working more as an Outreach Specialist for the entire program, delivering presentations on how the DDTP could assist all disabilities. As an independent consultant, it was my job to contact organizations of all sizes and provide presentations and demonstrations of all the equipment available.  The goal was to inform Lions Clubs, Rotarians, Chambers of Commerce, Senior Centers, Laryngectomee support groups, and others at Health Fairs about this “free equipment loan program”.  My territory covered all of Southern California, from Oakland to San Diego, and from the Pacific to the AZ/NV borders.  It was a fun job that turned into full time employment when the DDTP came under state management. It is now called CTAP, California Telephone Access Program.

As the California program developed, I’m sure some thought I was bragging about my state.  Sure, I was proud of what we had achieved, but more importantly I was trying to share what is possible with other states.  To my shock and horror I learned that some states had no program at all.  Some had very different programs based on income, need, and voucher systems.  Sharing on WebWhispers helped to spread the word about what was available from state to state.  I can only guess what brought about the movement for a national program like TEDPA. 

You may ask what is TEDPA, and how does it apply to you?  It is the acronym that stands for Telephone Equipment Distribution Program Association.  You may not be aware of it, but you are probably paying a few cents each month on your phone bill to support the Trust Fund that supports your state’s program, if you have one.  If not, you can get some help from TEDPA to start such a program.

If you go online and type in your state, i.e. CA-TEDPA, or AZ-TEDPA, you will find out what is available.  If you just type TEDPA, their website will show the following information.

“Our Mission"

The mission of TEDPA is to convene for the purpose of information exchange and to assist one another with the administration of specialized telecommunication equipment distribution programs for persons with disabilities.

The purposes of TEDPA shall be:

  • To educate its members about state and federal regulatory issues and to advocate for changes when they seem to be in the interest of improved quality and efficiency of specialized telecommunications equipment and related programs.

  • To share information about program administration, to share cost-effective ideas and techniques, and to promote ideas about community outreach.

  • To provide representation to other professional, technical and consumer organizations desiring input.

  • To actively examine and advance discussion about issues pertaining to specialized telecommunications equipment when appropriate as determined by TEDPA members, prepare items for membership review and submit advisory opinions about those issues.

  • To perform other functions that may be deemed appropriate by TEDPA members. The association is organized exclusively for charitable, educational, religious or scientific purposes within the meaning of section 501 (c) (3) of the Internal Revenue Code

TEDPA National Surveys

TEDPA conducts national surveys, and maintains data concerning states which have telecommunications equipment distribution programs.

Data is maintained concerning, numbers served, disability populations served, equipment distributed, and distribution methodologies.

This information is maintained largely for the use of TEDPA members, but a generalized version of the information may be released to the general public.

Information released to the public may omit budgetary information, and shall omit any information which equipment vendors, manufacturers, or State governmental entities designate as proprietary.”

In September 2007 TEDPA met in Montana.  Their next meeting is set for September, 2008, in Massachusetts. If you, or your organization, are interested in improving the program in your state, please plan to attend so you can receive the assistance needed to make it happen in your area.  Your efforts will assist numerous people in countless ways that you may never know about.  Volunteer.

Elizabeth Finchem

 

 

 

 

 

To be a lary

it helps to enjoy yoghourt

and ripe bananas

by Rosalie Macrae

 

I read a deceptively simple little haiku this morning in a magazine recipe section, full of things I cannot swallow, while mildly choking on a raisin lurking in my porridge. They are all little, these haikus, composed as you know, of three unrhymed lines of five, seven and five syllables.. And devilish difficult to write too. Try it. Anyway, I thought this one, copyright of one C Blackmore, a foodie and an invalid with a soul, I feel sure, was apt for any larys who, like myself, ache for the savour of squashy fresh bread, or the unique feel of a crunchy apple wedge going down your gullet. Sometimes they choke you and you have to have a tracheotomy but I haven't the statistics on that.

This haiku says (and the placing of the words is as important as Tarot cards, and the font too, so this is a pretty type called Vivaldi) -

Taste. Like my beloved Spam. How I miss frittering it, since introduced to its exotic Argentinean essences by American soldiers who brought it in PX cardboard boxes to my father's pub during WWII, bribing him for a shot of under-the-counter Scotch. It deserves the capital. Spam. Like the C in Champagne.

In France you can be locked up for life in the Bastille, like the man in the iron mask, if you just write the word without a capital. As in champagne. But even worse if you write Champagne about any old fizzy white wine which doesn't emanate from the vines in the pocket of France around Rheims where they make the real stuff. In the foyer of Moet & Chandon in Epernay, the fountain cascades Champagne all day. Well, until eight in the evening when all the staff all go home for definitely not spam, and lots of rough vin rouge for a change. Or to AA which has a healthy membership in Rheims.

'Je m'appelle Simone et je suis alcoolique.'

'Bon Soir Simone!'. Applause.

I've found out that Spam even has its own haiku poetry club website. Just think. That man beside you in the traffic jam yestarday, rolling back his lips a bit fiercely might have been working out his haiku for the day. Beats obscentities. About the spam haiku though. These two are extracts.

I thought Martha Stewart's hell would have been state prison but they sent her to quite a jolly one I believe, too posh for Spam. And I confess to never having heard of John Belushi. But I have now. Very sad death of an overdose after a last meal of lentil soup followd by many substances. The obit didn't mention cold Spam canapés but then that's haiku poetic licence.

Whatever, food is a god for most people, although they don't realise it until they are forced to be peg fed like some of us, or have our tea thickened to slices, (my personal worst) or stood over by neighbours while we eat their squash. Perfect, digestible, utterly awful lary food. They flaunt them, their massive zucchini, which they only grow to win competitions or give away. Be honest. Have you ever actually eaten a squash on its own? You sprinkle on as many additives as listed by law on thrift shop bottles of salad cream, to make the wretched green tubas taste of something.

Now there's something. Oh salad cream. I miss it too, on top of the perfect spam fritter. In fact I will now try to do a spam haiku and decide, when I've composed it, on the best typeset.

 

 

That was a font called Curlz MT, every Dell has it, and very nice too, honouring all these chemical, deadly Es, banned by Ensure and the like. Maybe the occasional E-slip would make it more exciting. I used to sprinkle the vanilla one with Lee&Perrins Worcestershire sauce but it made my stoma stoon, as we say in Scoland, alias sore, throb. Not to be advised...

This week my son-in-law is in New Orleans, interviewing, much to his surprise, some basketball Saints. He thought he was doing a 'freebie' travel piece for his London paper. The recovering city is eager to attract foreign tourists after Katrina and invited the British press to have fun and see the rejuvenation. I mention this because it weaves its way around to my favourite food. His boss, the sports editor, thought it would be a good chance for a story to go and interview some stars. My son-in-law has never been to a basketball game. It would be like sending an American sportswriter who has never seen football to interview David Beckham.

Being a creepy ma-in-law, I texted him to have a po boy oyster special for luck. and inspiration. I'd forgotten that the lad has never knowingly seen an oyster, let alone eat one. He only likes breaded fish with crumbs so thick that you don't taste the fish.

I will not start writing about oysters. I love them too much and would start a craving. They slide down the throat of any lary. Unless a complete vegan, poor thing. All these Tabascos and lemons and black pepper which are just pretentious and burn our throats, only mask the taste of this mollusc of the gods. Perhaps you may have noticed from the top of this column that I live in Colchester. Apart from being the oldest recorded town in England (not Britain) it is known throughout the gourmet world for its Colchester Native Oysters. Loaded on to planes all over the world, even New Orleans I wouldn't be surprised.

Sadly I don't have them so often though. At $3.70 each oyster, Rosalie sucks mussels instead. A poor second for a mollusc.

 

 

 

 

To: Editor@webwhispers.org

 

Just to say how much I have enjoyed reading various articles on this site today.


My husband had a total laryngectomy last July.

I did, in fact, subscribe to this site last year and found it of great interest and a sound source of information but, in the ensuing months, my visits decreased because of all the trauma that my husband (and I ) were experiencing, eg radio and chemotherapy, severely burnt and painful neck, the sudden onset of suspected rheumatoid arthritis, resulting in agonizing pain and swelling of his hands and wrists. Then, just when we were thinking, it cannot get any worse - the onset of psoriasis!!! (He had not had any signs of these conditions prior to his oncology treatment.)


We are coming out of the woods (fingers crossed) and expect to hear quite soon when my husband will be admitted for the voice prosthesis procedure. He is returning to good health and a normal life.


I did come across LaryngectomyLife.com last year and found this to be a real helpline. Its membership is small - but the people on there (mostly - but not all - are Brits) have become good web friends.


I now feel more relaxed and able to enjoy sites such as yours. And, I found here some "friends" from LaryLife, eg Rosalie Macrea who writes such wonderful witty articles - and Steve Bishop, enjoying the Alaskan Cruise. Some stunning photography - and everyone looked like they were having a real good time.


Of course, your names are now becoming familiar too - so, my husband and I are extending our group of lary friends and carers.


Thank you for providing such an informative and user-friendly site.
I will return very soon.


Mairaid Sweek
Great Britain


(Mairaid and husband, Paul, have now returned to the WW email list active membership)

 

 

 

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 43 new members who joined us during February 2008:

 

Margaret Abelseth
Bristol, VA

Thomas W. Adamik Sr.
Norwich, CT

Vangie Andersson - (Vendor)
Carpenteria, CA

     

Donna L. Bolick - (Caregiver)
Salisbury, NC

Rodney S. Bolick
Salisbury, NC

Glenn Budd
Rio Rancho, NM

     

Pamela Sue Burns
Marion, IL

Janie P. Bush - (SLP)
Mayfield, KY

Sandi Cobey-(Caregiver/Vendor)
Carpenteria, CA

     

David Coleman
Bessemer, NC

Michael Duran
Logan, Queensland, AUS

Paul Evitts - (SLP)
West Chester, PA

     

Deborah Frazier - (Caregiver)
Rio Rancho, NM

Wendi Gibson - (MS,CCC-SLP)
Bristol, TN

Stephen Goldman - (SLP)
San Diego, CA

     

Larry Haddaway
Deland, FL

Kimberly Hale - (SLP)
Athens, OH

Vikki Hankins - (Caregiver)
Milan, IL

     

Danielle Haynie - (Vendor)
Carpenteria, CA

Tom Helms
The Villages, FL

Carl Hendrickson
McGregor, MN

     

Ron Horn
Dunnellon, FL

Jean Kaufman
Indianapolis, IN

Arthur Kohout
Long Pond, PA

     

Katherine Kohout - (caregiver)
Long Pond, PA

Kamini Lemieux - (Caregiver)
Mississauga, Ontario, Can.

Carol Livingston
Mt. Lebanon, PA

     

Judy Mcfarling
Amory, MS

Karen McHale - (Caregiver)
United Kingdom

Anthony McHugh
United Kingdom

     
Jeremy Meinhardt - (Vendor)
Bartlett, IL
Mary Myatt - (Caregiver)
Mooers Forks, NY
Sheila Navarro - (Vendor)
Carpenteria, CA
     
Ann Oconnell
Grande Prarie, Alberta, CAN
Cheri Palmer
Birmingham, AL
Abdulla Sulaiman
Dubai, United Arab Emirates
     
Patricia L. Thompson
Cranford, NJ
Otto Veltman
Netherlands
Kim Walker - (SLP)
Edmonton, Alberta, CAN
     
Sandy Warren - (caregiver)
Ardmore, OK
Daniel S. Weber
Cottonwood, AZ
Jane Zehelein - (Caregiver)
Rock Falls, IL
     
Theodore Zehelein
Rock Falls, IL
   

 

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.
 
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is eligible to receive tax-deductible contributions in accordance with IRS § 170.
 
  © 2008 WebWhispers
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