Support Lines          Vol. 2  Number 4       February 16, 2004    

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Inside This Issue:

• Web-based Health Support

• New Peer Focus Group Meeting Brief

• Night at The Improv -Friday, February 13, 2004

• Editor's Note -A Test

• Talk Back!-Greetings From Wales, UK

• Cloning the Dead

• Cognitive Dissonance VI -by John Pistorius

• Monroeville Area Meeting Brief-February 12, 2004

• Pittsburgh Area Meeting Notices

• Thank You! -The people who make it all possible.

• PABIA-NEWS Subscriber Policy

• Subscribe/Unsubscribe Instructions

Web-based Health Support

Mount Sinai School of Medicine Needs Web Addresses

In particular, they are interested in websites that you think are helpful for persons who experience brain injury and related disabilities. They are want website addresses that are related to health. They would like to know about websites that are easy to use for individuals with cognitive challenges. They will be examining these sites as part of a project funded by the Centers for Disease Control and Prevention.

The project is titled Web-based Health Support for People with Brain Damage. It involves building a website at Mount Sinai School of Medicine The website that they are constructing will provide a number of services for persons with traumatic brain injury, multiple sclerosis, and other health problems that cause cognitive challenges.

These will include:

• FAQs

• Fact sheets

• Links to useful sites

• Information on collecting and evaluating information relevant to one's health and health care

• A system of reminders for making and keeping appointments with health care providers

• A system for producing documents at home including a summary of one's medical history, a current medication list, and a list of symptoms/issues to be discussed with your health care provider.

Please email them with the addresses of websites that you like that relate to health and/or disabilities related to brain injury, and sites that are easy to use for people who have had injuries or medical conditions that affect the brain. Any comments that you have about these sites (e.g., "Great source of information on health problems after MS" or "The site design is simple and uncluttered and it's easy to find information") would also be welcome.

"Thank you in advance for your input. Spread the word to others who are familiar with the web. We will get back to you when the site is launched some time in 2004. " -Joshua B. Cantor, Ph.D.

Department of Rehabilitation Medicine
Mount Sinai School of Medicine
One Gustave L. Levy Place
Box 1240
New York, NY 10029
Phone (212) 241 8850
Fax: (212) 241 0137
joshua.cantor@mountsinai.org

New Peer Focus Group Meeting Brief

Monday, February 9, 2004

The first meeting of the newest peer support group was a success. Lisa Taubman, a doctoral candidate at the University of Pittsburgh, opened the meeting by introducing herself. She then proceeded to read a list of ground rules to govern the meeting.

Eight people attended, including the organizers and facilitator. Discussion centered around employment issues.

Attendees enjoyed fresh fruit supplied by Malin Lowenadler-Shadel, cheese and crackers supplied by Lisa Taubman, bottled water and hot coffee.

Anyone interested in attending can contact John Pistorius at 412.481.0443 or jp@pabia.org.

Night at The Improv

Friday, February 13, 2004

They say laughter is the best medicine, and seven of us got a healing dose at the Improv. For those of you who are unfamiliar with the Improv, it is located at the Waterfront in Homestead.

We started the night with appetizers and dinner. We enjoyed Grilled Chicken, Prime Rib, and Vegan meals.

Then on with the laughs. To bad some of the comedians poked fun at people with disabilities.

We are planning to organize a night at the Funny Bone Comedy Club. Anyone interested can contact Malin Lowenadler-Shadel at malin@pabia.org.

The Funny Bone will donate 75% of the ticket price to our group as a way for us to raise funds. They have offered us the chance to have tickets printed with our group's name on them. Interested in helping us sponsor some folks for this great event? Let's get it going! We can all use a good laugh.

Editor's Note

John Pistorius

Hi folks,

Please take a moment to read the following simple test-

Q-The following is a picture of what; vegetables, animals or people?

A- VEGETABLES

Q- Where do vegetables come from; The earth, the sky or people?

A- The Earth.

Q- What are the subjects of these pictures?

human beings, animals or vegetables?

A- Human Beings.

Q.-Where do human beings originate on earth; the ground, the sky or other people?

A- Other people.

Vegetables are consumable and disposable. People are not. It is time to take a stand and demand changes in the way that people are labeled.

Each of us can make a difference if we take a moment to write brief letters to the medical facilities, news media and all other sources of public information.

It is time to stop labeling people as 'vegetative' and 'vegetables'. You can make a difference that could affect your life or the life of someone you love.

That is the real test.   Can you pass it?

Do it.

ANY QUESTIONS?

Talk Back!

Greetings From Wales, UK

Well sir, thank you for having a site of hope for people who are just going down the long road of a loved one with a brain injury, God bless you.

-Sylvie
 

Cloning the Dead

Scientists trying to bring the dead.

Believe it or not, there are scientists out there trying to bring the dead back to life. They're not mad, but they are dedicated, because they believe it will happen, sooner or later.

It might not occur on a cold stone slab, there probably won't be lightning flashing between huge electrodes, and it definitely won't take place in a gothic German castle. But it will happen. Somewhere, scientists will revive the dead--and not just an individual, but an entire species.

Cognitive Dissonance VI

Tools to Overcome the Monsters

John Pistorius

I was afraid of the monsters and the idea that I owned them. Nevertheless, I forged ahead in my mission to free myself from their grasp and control. Owning them was almost equal to being as scary as they were. Understanding my ownership role helped me to get rid of them.

I persisted in my quest to overcome these military geniuses. I wanted and needed to rid myself of their restraint. It required constant, diligent effort. Fighting off the chains of negative thought has given me new freedom. By documenting the battle, I’ve received knowledge of the tools to overcome even more. I’m learning to be free.

Cognitive dissonance is a subjective experience. Although the state of dissonance can occur because of external conditions, they do not define it. Different people react differently to the same conditions. The biased nature of dissonance gives us insight into our personal power in overcoming it. We can control our reaction to inconsistencies.

Real Tools for Overcoming Disharmony

Self-help material, learning new information and trained professionals can be used as tools to help us overcome dissonance. These tools ease the process. However, the process needs our energy and effort. Sometimes it helps to have a guide who is familiar with the battle. Others who understand more than we do about the bigger picture can be useful.

We must use the tools and accept help to receive the benefits they offer us. Too often, we are looking for a pill that will do the work for us. Not so in battling cognitive dissonance. It requires our hands-on effort. We must play an active part in the process or it will not work. We must have faith, which is the substance of things hoped for and evidence of things unseen.

Five Strategies for Eliminating or Reducing Dissonance

Festinger compared our need for cognitive harmony with biological pressures, like hunger. We are intensely driven to satisfy that urge. Because dissonance is painful or causes us discomfort (similar to hunger), we will use any of a variety of methods to reduce or eliminate it.

• Reject the new cognition-

  • A medical company employee might believe: “Anyone who experiences Brain Injury can't possibly be articulate, because I’ve met hundreds of survivors in my line of work and know they are not.” They might share their belief with others. They can influence the people that they work for, clients, families and their friends, co-workers and acquaintances.

  • A person who experiences Brain Injury might reject a negative ‘‘professional’’ prognosis with: “I’m able to overcome these deficits, because I’ve always been able to recover from anything that happened to me in my life.”

  • The professional might then counter with: “The patient is in denial and unwilling to cooperate.” or “The client is noncompliant and unrealistic.”

I read somewhere about a scenario where a student was given a failing grade on an essay about goals. The teacher said the student's goals were unrealistic and offered to reevaluate the paper if he would modify the goal to reflect something more realistic. The student resubmitted the paper unchanged and told the teacher to keep the failing grade and he was keeping his goal! Years later, the teacher witnessed first-hand the achievement of that student's ‘‘unrealistic’’ goals. I can personally attest to the power of faith in this respect.

• Reduce the importance of the dissonant cognitions;

  • “Anyone who becomes articulate after Brain Injury either wasn't seriously injured or they are lucky. So it does not matter if they can express ideas better than me.”

  • Aesop's fable of the Fox and the Grapes: I can't get them; therefore, those grapes are probably sour.

• Add new cognitions;

  • “That woman really speaks and writes well, so it is possible that some people who experience Brain Injury are capable of overcoming language impairments.”

  • “I am able to learn, therefore, I can break down these recovery barriers.”
    “Research suggests that the human brain is capable of switching language to opposite areas in the brain to compensate after stroke. Maybe this holds true in cases of Brain Injury too.”

  • “My abilities outweigh my disabilities. I am able to compensate for the things I am less able to do by focusing on the things I can do.”

  • “I am willing and able to automatically, immediately reverse negative ideas, and statements that occur to me. I can replace those negative thoughts with the opposite.”

• Change the dissonant belief so it is no longer inconsistent;

  • “Sue was diagnosed Aphasic after Brain Injury and she is one of the best public speakers I’ve ever heard, so it must be possible to overcome speech deficits and Aphasia.”

  • “My behavior was labeled ‘inappropriate' and I was told that I must remember that I would always be slower, yet I’m quicker than many people who never sustained brain injury. That prediction was inaccurate.”

• Change the behavior to reflect the new cognition;

  • “I will encourage people to work with their abilities and overcome barriers to navigate around their deficits.”

  • “I will accept every person as an individual and treat them with the full respect that I would expect from others.”

Dissonance Reduction and Attitude Change

Dissonance may be reduced by rejecting or reducing the importance of the inconsistence evidence, but attitude change and real learning do not take place. Learning can occur with the other strategies however. By evaluating the new knowledge and adopting it, the person rejects the old belief or information.

In his experiments, Festinger demonstrated a key component in reducing cognitive dissonance. He discovered that by giving them a small incentive he could get his subjects to adopt new information. Larger incentives did not have the same effect.

Large incentives caused the subjects to change their behavior, but not the underlying belief or attitude. The larger inducement was enough to justify the contradiction in their thoughts, ideas, attitudes and beliefs. As a result, they were able to act in a manner that was contrary to their attitudes, beliefs or thoughts. This illustrates why we have not eliminated discrimination with legislation. The laws provide enough incentive to get people to change their behavior in some respects, but have little or no effect upon their underlying attitudes and beliefs.

Two Universal Resolution Categories

The five strategies can be grouped into two general categories of resolutions;

• The individual can either discard the original belief; or

• Disregard the contradictory evidence.

Many movies have clear examples of cognitive dissonance resolution. One of my favorites is the classic, “It's a Wonderful Life.” This film is full of examples of dissonance resolution. James Stewart gives a terrific performance as small town hero, George Bailey.

Interestingly, the film “It's a Wonderful Life” began in 1939 as a two-page outline for a short story by Philip Van Doren Stern called "The Greatest Gift." The movie started shooting at Beverly Hills High School on April 15, 1946. It premiered on December 20, 1946. Leon Festinger didn’t develop his theory of Cognitive Dissonance until 1957.

According to Frank Capra, “There's more to the picture than I put in it. There's more to the picture than was written in it. There are more values in the picture than we knew we were playing with, that we didn't even expect. There's more to it than we thought we had. It's the picture I waited all my life to make.”

'It’s a Wonderful Life' Examples of Discarding the Original Belief

1. In the movie, young George Bailey expresses his desires to leave his little hometown of Bedford Falls. He plans to attend college and travel. He shares his whole life plan with his friend Mary.

“I'm shakin' the dust of this crummy little town off my feet and I'm gonna see the world. Italy, Greece, the Parthenon, the Coliseum. Then, I'm comin' back here to go to college and see what they know. And then I'm gonna build things. I'm gonna build airfields, I'm gonna build skyscrapers a hundred stories high, I'm gonna build bridges a mile long...”

 

Then a sudden twist of fate occurs. George's dad, one of the founders of the Bailey Building and Loan, has a stroke. He must decide whether he will stick with his original belief of college and travel, or stay to run the Building and Loan. This situation produces a dissonant state for George. This is because if he doesn't stay, the villain, Mr. Potter, will take over the building and loan business. George believes this would ruin the town and harm the town's people.

 

After facing off with Potter, he resolves this situation by dumping his original belief of going to college. And he accepts the new evidence that he must stay in Bedford Falls and run the Building and Loan.

2. George manages the company while his brother attends college in his place. Harry is supposed to come back to Bedford Falls and run the family business after he graduates. With travel brochures in his hands at the train station, George excitedly waits with his Uncle Billy for Harry to return.

George believes that he will finally be able to pursue his goals when his brother replaces him at the building and loan. He thinks he can leave Bedford Falls at last.

Harry and George excitedly greet each other as Harry jumps off the train. But then another twist of fate occurs when Harry introduces his new bride. And George learns of Harry's promise of profitable work out of town. Harry was offered research work in his father-in-law’s glass factory in Buffalo.

 

The dissonance is captured in a close-up of George's pained, frustrated and discouraged face. His dreams of escape and adventure are ruined.

‘It’s a Wonderful Life’ Examples of Disregarding the Evidence

1. George’s plan for college and travel do not include Mary. His plan causes her to experience dissonance. Mary is secretly in love with George.

As George is ranting about his belief that he will be seeing the world, Mary battles her experience of cognitive dissonance by making a wish. It is revealed later that she wished to be married to George and raise a family. She refused to believe that he would move away. Instead, she had faith that they would be married and lives in the house that they threw rocks at.

2. As the movie progresses, many years have passed. George finds himself in a desperate situation. His Uncle Billy has somehow misplaced $8,000 dollars of the company money. Mr. Potter finds the money and keeps it. George is unaware of Potter's deception.

Potter runs the bank. So George goes to Mr. Potter for help to keep the Building and Loan from bankruptcy and to keep himself from public humiliation and arrest. Mr. Potter asks for collateral and George offers his life insurance policy without much equity. Potter tells him he is worth more dead than alive which causes George to experience massive cognitive dissonance. He weighs the new information Potter supplies (worth more dead) against his former belief (worth more alive) and must make a decision between the two.

Overwhelmed by Mr. Potter’s thoughts, George Bailey is compelled to consider killing himself. George finds himself on a bridge over turbulent waters, contemplating suicide.

As he takes a step in that direction, his Guardian Angel, Clarence jumps off the bridge into the frigid waters below. True to his character, George jumps in to save Clarence, instead of selfishly pursuing his suicide attempt.

Clarence reveals George’s value to him by showing him how the world would look if George had never been born. George is brought back from self-destruction when Clarence presents him with this terrifying view of the world. This new information helps George overcome the dissonance and he decides that his life is valuable.

Another Example of Changing Cognitions and Discarding the Original Belief

Some of my favorite moments in the film occur during the phone conversation sequence. George and Mary listen and talk on the same phone by sharing the same earpiece extension. They are squeezed together. George is visibly uncomfortable and resists his close proximity to her.

He realizes that he loves her. But admitting this would mean remaining in Bedford Falls, and force him to give up his dreams and aspirations.

In a long close-up of them ear to ear, they listen to Sam offering George a 'get-rich' job in his new plastics business. Sam merrily mocks George:

"I may have a job for you, that is, unless you're still married to that broken-down building and loan. Ha, ha, ha. It's the biggest thing since radio and I'm lettin' you in on the ground floor."

George squirms and tries to restrain himself. He is standing so close to Mary that he can smell her hair. Sam tells Mary to encourage George to accept his offer:

“Will you tell that guy I'm giving him the chance of a lifetime? You hear - the chance of a lifetime.”

She looks upward at George. With her lips almost on his she reinforces what Sam has said in a whisper:

“He says it's the chance of a lifetime.”

They suddenly drop the phone to the floor. Instead of embracing and kissing Mary, he holds her angrily by the shoulders and starts shaking her, feverishly fighting the dissonance he is experiencing:

“Now, you listen to me! I don't want any plastics, and I don't want any ground floors, and I don't want to get married - ever - to anyone! You understand that? I want to do what I want to do. And you're...and you're...”

George runs out of words. Mary begins sobbing powerlessly. George instantly reverses himself and forcefully embraces her. He overcomes his resistance to the conflicting evidence and starts to kiss her, passionately, all over her face. They are both overwhelmed by their secret love for each other.

Overcoming Real Life Dissonance

Sometimes we need to overcome seemingly insurmountable odds in our lives. Those odds can appear to be monsters that prevent us from living satisfying, productive lives. I have heard many people who have survived brain injury express their dissatisfaction with life by proclaiming, “I wish I had just died.” To them I say- "You have a purpose here. With all of the distractions out of the way, now you can perform your ‘job.’"

Many dissonance producing situations are caused by societal stereotypes and negative perceptions regarding brain injury. These are monsters that cause attitudinal barriers. We must become familiar with them. By identifying them we can become victorious and overcome the dissonance they cause.

Next time; Stereotypes, Perceptions and Facing Reality.

Monroeville Area Meeting Brief

February 12, 2004

Topic-Vagus Nerve Stimulation (VNS)
Speaker-John Simone of Cyberonics^®, Inc.

Mr. Simone explained how Vagus nerve stimulation is a new therapy for the treatment of seizures that are resistant to conventional medicines. It involves surgical placement of a small stimulator under the skin in the chest.

The stimulator is attached to a small lead, which is then attached to the vagus nerve in the neck. The stimulator provides a light electrical signal on and off throughout the day. In many patients, this causes a substantial improvement in seizure frequency and severity.

The goal of treatment is to maximize quality of life by avoiding seizures with as few side effects as possible.

Neurologists generally agree that if you are unable to control seizures after trying three different medications, there is little hope that additional medication will give you seizure freedom.

For more information visit www.vnstherapy.com  or call Cyberonics, Inc. at 1-888-867-7846. Mr. Simone can be emailed at john.simone@cyberonics.com .

Pittsburgh Area Brain Injury Alliance

Upcoming Meeting and Social Event Notices

Next Pittsburgh Area meeting date: Tuesday, March 2, 2004

TIME: 7:00 P.M.
TOPIC: Planning for the Future: Dollars and Cents, with Maria Smith, Director of Family Trust-ACHIEVA.
PLACE: 1323 Forbes Avenue, Pittsburgh Near Mercy Hospital and AJ Palumbo Center
ADMISSION: Free
PARKING: Free Parking Lot adjacent to the building.
Contact: Ed Crinnion at 412.761.9870 or John Pistorius at 412.481.5482.
Refreshments provided.

The next Indiana Twp. meeting date: Tuesday, March 9, 2004

Time: 7:00 P.M.
Place: the McLaughlin Education Center of HealthSouth, Harmarville.
Admission: Free
TOPIC: Life Care Planning for special needs children and the families with Mark L. Sanders of Advocates For Dignity.
Parking: Free Parking in the HealthSouth Parking Garage
Contact: Tom Byrnes at 412-531-0343 or Ann Ciotoli at 412-828-1300
Refreshments provided.

The next Monroeville Area meeting date: Thursday, March 11, 2004

TIME: 7:00 P.M.
PLACE: Cross Roads Presbyterian Church, 2310 Haymaker Road, Monroeville, Pa.
TOPIC: COMMCARE WAIVER, with Ms. Amy Dana of Keystone Neurological Rehabilitation
ADMISSION: Free
PARKING: Free parking lot adjacent to the building.

Contact: Denise Patterson at deenomad@aol.com or Paul Damon at 412.372.2888
Refreshments provided.

New- Indiana County Brain Injury Support Group

When: Thursday, February 19, 2004
Time: 7 to 9 pm
Topic: "The Hidden Scars from a TBI (Traumatic BRAIN Injury). Physical, Mental and Social, and the New Challenges of life ever." with ED Crinnion - Pittsburgh Area Brain Injury Alliance - Coordinator and Brain Injury Association of Pennsylvania - Board of Directors 2000-2005
Place: Indian Haven Community Home, 1675 Saltsburg Ave., Indiana, PA 15701
Admission: Free
Parking: Free Parking Lot adjacent to the building.
Contact: Becky Myers 724.349.5934 or BILL Compton 724.639.9416
 

Western PA BIM / HS Recreational Bowling League

Where: Fun Fest Entertainment Center, 2525 Freeport Road, Pittsburgh, PA 15238
WHEN: Monday Feb 23rd, March 22nd and April 19th.
COST: $7 per person, Bowl 3 games, Includes shoes, 2 slices of Pizza & unlimited fountain drinks.
TIME: 3:30 PM TO 6:30 PM on Lanes #35 to 40

Bowling at Fun Fest is Wheel Chair Accessible and there are Bowling Ramps.
For more information contact Tom Byrnes at 412-531-0343.
 

Thank You!

These are the people that make it possible.

Ed Crinnion (412) 761-9870 for your continuing efforts in keeping the Pittsburgh Area Brain Injury Alliance together, funding the organization's website and supplying refreshments for PABIA meetings.

Becky Myers (724) 349-5934 and Bill Compton (724) 639-9416 for your ongoing commitment to peer support in Indiana County.

Jim Sproat and realty Counseling Co. Inc. (412) 381-1166  for your support of the PABIA-NEWS, electronic newsletter and for the use of your digital camera. We greatly appreciate your help. Anyone interested in contacting Jim to thank him personally, can call or visit his website at http://www.realtycounseling.com.

Denise Patterson and Paul Damon (412) 372-2888 for your ongoing coordination of the Monroeville area Peer Support Group.

Ann Ciotoli, MaryAnn Stritmatter 412-828-1300 and Tom Byrnes (412) 531-0343 for your ongoing commitment to peer support.

PABIA-NEWS Contributors- your insight, articles, poems and comments are vital to the success of this publication.

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