Author: Jane Glenn Haas

Five years after a massive stroke and befuddling stroke, Shirley Porus is remembering.

“Is this me?” she asked in wonder when she picked up a book of her poems just three months ago. She had no memory of writing the words. But today, she recalls a bit here, a disconnected piece there- maybe not everything but at least something about writing the poems, the songs, and the children’s books. She remembers because her husband, Marcus, patiently told her stories, over and over again. Stories about anniversaries, anecdotes about birthday parties, tales of family gatherings. He linked her written words to her past through storytelling, and the technique worked. “When they read to me, then in all comes back,” Shirley, 78, says. “They tell me the story and I remember. I may not say it, but I remember it.”

Using storytelling to jog memories is a new buzz, a strategy for caregivers who want to bring the past into the present for brain-damaged patients. In California, at least 1.4 million people impaired by head trauma, stroke, dementia. Stroke patients are more inclined to lose physical abilities than memory, says Dr. Steven Cramer, neurologist at UCI Medical Center. “But those that do lose memory rarely regain it,” he says, adding that too often family and medical experts give up on stroke patients, limiting their recovery potential.

People with head trauma have different outcome potentials, he says. For example, a brain-damaged middle-age farmer in “The Drawer Boy,” which runs through June 29 on the Main Stage at South Coast Repertory, regains memories when he sees his past life in a play. In this case, art is mirroring reality, says Karen Brennan, a creative writer professor at the University of Utah. She used a similar technique to aid her daughter’s recovery from a major brain injury eight years ago. Her experience is chronicled in “Being With Rachel: A story of Memory and Survival” (Norton 2002).

As Rachel lay in a coma for four months, Brennan sat beside her, telling stories. When Rachel regained consciousness- but had no short-term memory-Brennan spent hours telling her daughter tales about her past because she believes there is a link to a person’s ability to absorb stories and short-term memory. Today, Rachel is 32, “still struggles with short-term memory although she is much better,” Brennan says.

As “The Drawer Boy” program notes, memories are made deep inside the brain in a structure known as the hippocampus and stored in the outer part of the brain, or cortex.

Shirley’s stroke Nov. 11, 1998, robbed her of speech and movement. More, it left her with empty pages in her brain. Despite quick action by her husband in calling paramedics, regardless of swift emergency room response including “clot buster drugs,” Shirley had aphasia, a communication impairment from stroke that affects the ability to speak and write. She worked with physical and speech therapists. Slowly, she regained some physical abilities. But Marcus refused to give up on his wife of 65 years. They moved from their Fountain Valley home, the place they moved to from Chicago in 1993, to a smaller single-floor home in Huntington Beach. “This is just a new, great adventure,” Marcus told Shirley as he encouraged her improvements. Care giving, he admits, “is a tough job, but if you love someone, you make up your mind you have to do it and somehow, you do it.” In February, Marcus and the couple’s son, graphic designer Stephen Marcus, put together a book of Shirley’s writings- poems for special occasions, children’s books and songs. “Is that really me?” she asked as she saw the pages, a question that became the book’s title.

Marcus persisted on helping her remember. He talked about his 75th birthday party. He read her poem to him: “Happy birthday, dear Marcus, you’re one of a kind…” He sand her songs, “When life is hard and things look bad, your troubles make you fell so sad, just straighten up and start to sing about all the good that life can bring.”

A few weeks ago, Shirley asked to read the book. And she began correcting the typos, the misspelled words, and the punctuation. “Her therapists were floored,” Marcus says. Only months later, his wife sat in front of the computer and cried. Her hand wouldn’t move on the keyboard. Today Shirley grins. “I wrote the words. He says I did. I remember.”

Is storytelling a unique way to prompt memory? Cramer is not sure. “Anything that cues the brain, that improves the environment, is always better.” Of course, recovery also depends on the amount of damage, he says. Cramer equates the brain to”big string of fatty, wet spaghetti,” creating many sites of small damage. “Think of is as maybe destroying every fifth lawn in Costa Mesa,” Cramer says. A stroke, by compassion, “could destroy all of Costa Mesa or even everything along Interstate 5. “Some people have small losses, others must be institutionalized. It depends on what breaks inside.”

Shirley says the worst loss for her is independence: “Being able to go out and do as I please, so what are you going to do?” Then Marcus reminds her they do go out. At least every other day they go somewhere, he says. Maybe a restaurant, an evening with friends or even a play. And they laugh a lot. He labels her garbled words “Shirley talk.” “Once you can start laughing about it, it gets easier,” Marcus says. “Make her laugh. That’s one thing I can do.” Shirley grins. “Make me laugh. I love to laugh. Makes me happy.”

Source: The Orange County Register, Wednesday, June 18, 2003

Author: Bryon Price

The doors open and in walks a six foot, two inch man with dishevelled white hair, wispy strands sticking out from under a blue chapeau. He is wearing a tweed jacket. A button on the jacket reads: “When your brain holds your words hostage – aphasia.”

What is aphasia? Aphasia is a communication disorder caused by brain damage. Stroke (brain attack) is the most common cause of aphasia. Aphasia affects the ability to use language. While intelligence remains intact, people with aphasia may have difficulty speaking, reading, writing, and understanding speech.

On April 24, 2002, Hank Zyp, a 10-year columnist with the Western Catholic Reporter, had a stroke at his home. He sustained brain damage affecting his right side and his speech. Zyp recounts his ordeal: “When I had my stroke, I felt like I was in a bubble alone – people talked but it was gibberish to me – nothing. Radio and TV – same thing. I felt naked and helpless like a baby, not being able to make contact.”

In the early days and months following the initial stroke, the possiblity of a death wish entered Zyp’s mind. But his belief system, family, friends, and especially the love of his wife Tillie caused him to say “yes” to life. Zyp has been receiving treatment in physiotherapy and speech therapy in Edmonton and Calgary for the past year. He has great trouble with word retrieval. For example, he knows the concept of “coffee” in his mind, but the word often eludes him. The problem occurs in the processing of the information from the mind to spoken words or words written on paper.

He explains that a good part of his day is spent with a video showing flash cards with a voice simply saying words like “cat.” Zyp listens to the sounds and watches where the lips are placed in saying the word. He has to concentrate for every word and finds it to be very tiring.

For Zyp, the written word is returning more quickly than speech. He feels his understanding of what he reads has increased from 5% to 75%. He can also write some words and uses his artistic ability to draw pictures to illustrate ideas.

The following expression of ideas is drawn from an interview with Zyp in April 2003 – one year following his stroke. Zyp demonstrated his fierce determination to express himself. He augmented his limited speech by writing words and using drawings to get concepts across. He also pointed to sections of his previous writings to communicate complex ideas. One thing that was obvious in this interview was that Hank Zyp has retained his intelligence, memory and sense of humor.

Zyp shares the following:

“The experiences of having a stroke has left me sad at times. It is as if something has been taken away from me – like an amputation; but in this case, it is my mind that has been taken away. The professionals call it ‘aphasia.’ I call it ‘hell.’

“I enjoyed writing my column in the Western Catholic Reporter. It gave me contact with the world. Now, it is very frustrating not to be able ot communicate as deeply and quickly as I once did.”

“People say I’m doing well. Maybe there is hope for me to get better, but I feel I will not be the same as before. I had a passion for words, and now I struggle for the simplest of words. Life was good for me. Now there is a big change. I feel like Job in the Old Testament – why is this happening to me? I also feel very lucky that I can still draw.”

“I always talked about the global community. Now I realize like never before how much I have to rely on people. The stroke has also taught me more about two virtues than any other experience in my life – humility and patience. These are much more a part of my life than in the past.”

“My sadness, weeping and tears are caused by my inability to express what is in my head. I could write poetically before, buth that eludes me know. I live in a confusing world in my mind. I am looking forward to the future, but I have to keep my desire in check because I am wishing, maybe unrealistically, that all will be the same as before.”

“I believe I am more realistic about my expectations at this stage of my recovery. I guess that is realistic progress.”

“When I wrote for the WCR, I wanted to teach the wisdom of the poor and their history. I have spent most of my life working with the poor. We in the West, with our great cities, architecture and technological achievements, look at ourselves as clever. I don’t think we can say that we have wisdom.”

“In my journey with the poor peasants who have very meagre lives by our standards, I came to realize that the valuable wisdom they had to impart was very much akin to the Gospel message of Jesus Christ. All my life is about making contact with humanity. My sense of being, thinking and feeling is the connection that makes me feel alive.”

“One day, I hope to write again on behalf of the poor, but I know I have to begin with a smaller ambition. I will begin by writing letters to people. Somewhere down this winding road, my capacity could kick in.”

“As I look back on my life, I have to say I have been very lucky. I had the opportunity to write manuals, books and columns. I have worked in Third World development, work with native peoples and sung in the choir. I have gained much from the opportunity to meet people like Ernesto Cardenal and other friends who fight for justice for God’s people. I would say my life has been a life of blessings.”

Author: Linda DeNicola

Vincent Meringolo of Howell, NJ won first place in pastels during the local 2003 Senior Art Show with his piece called Still Life with Fruit and Wine. Judging took place at the Freehold Township, NJ Senior Center on February 4, 2003. Those who entered the art show are taught by area art instructor Susan Winter.

Meringolo had a stroke 18 months ago, and while he can’t verbalize, he can paint. According to his wife, Rose, the painting that he won a first-place honor for was done before stroke. But last year he received honorable mention for a painting he had done after the stroke which left him with aphasia, an inability to vocalize his thoughts.

Rose said her husband has been painting since he retired 11 years ago and has taken classes along the way. He has been studying with Winter, an Allentown, NJ artist, who teaches and runs the contest & exhibition at the senior center.

Meringolo, who works in pastels, watercolor and charcoal, likes pastels the best, said his wife. Although the couple lives in Howell, Meringolo’s wife drives him back and forth to the art classes. He had been studying with Winter before the stroke. “He was away for about six months and started again in September,” Meringolo said, adding that Winter had been very helpful. “Susan is a fantastic person when it comes to my husband, ans she’s a fantastic teacher. He looks forward to going and can’t wait to get there.”

Author: Greg Rickabaugh

Delshon Flournoy doesn’t venture outside very much these days. He seems satisfied with staying in his upstairs bedroom at Underwood Homes, eating Ritz crackers and watching kung fu movies. On a good day, family members or old friends come by to visit. But, those stopovers are becoming less frequent, and when visitors do come by, they do all the talking.

Mr. Flournoy was robbed of his speech by a bullet to the brain in 1999. Two men with revenge on their minds came to a friends’ home on July 24, 1999, and shot into the residence. Several people were inside, including children. Mr. Flournoy, a visitor who was not the intended target, was struck in the head by a bullet. He eventually emerged from a coma, paralyzed on his right side and unable to speak.

The shooters stole more than his ability to speak. They also took his ability to hold his daughter, to earn a paycheck, to play basketball with his buddies – even to drive a car. Instead of worrying about being late to his job at Applebee’s, Mr. Flournoy, now 24, must worry about taking medication to avoid a seizure. He can’t make his bed. His 11-year old niece does it most days. “I come over everyday after school,” says Keyerra Walker, a fourth-grader at W.S. Hornsby Elementary School. “He used to talk and clean up by himself and stuff. He liked to play with us. We would play freeze tag.”

Mr. Flournoy is back home, living in the projects with his mother, Mary Flournoy. She was getting used to baby-sitting her grandchildren when her son got hurt, and now she again has the responsibility of caring for one of her nine children. In December, before a judge sentenced rapper Verenzo Holmes and convicted marijuana dealer Jeffery Float to 25 years for the revenge shooting that injured Mr. Flournoy, a prosecutor read a statement from his mother. “Delshon will never be able to play basketball, computer games or do any of the things he once enjoyed doing,” she wrote. “Delshon will never be able to communicate the way he once did, and it breaks our hearts.”

At home every day, Ms. Flournoy puts lotion on her son. She makes sure he takes his medication. She prepares his meals. “I like soul food – butter beans, green peas, steaks and small pork chops,” Ms. Flournoy said. “He doesn’t like that. He buys spare ribs. He buys lasagna and Ballpark hot dogs with cheese in them.”

Ms. Flournoy pays for his food with his disability checks. He used to make money working two jobs. He was a cook at Applebee’s and a stocker at Kroger. Work isn’t an issue these days. Communicating is a bigger chore.

Deanna Kelly knew Mr. Flournoy needed help as soon as she met him in the District Attorney’s Office, where she works as a victim services representative. “This is going to be a life sentence for him,” she said. Ms. Kelly was moved by Mr. Flournoy’s plight because her nephew had been shot in a similar situation. “He was an innocent bystander and got killed,” she said. “For Delshon to have survived, it moved me.”

Ms. Kelly looked into resources that would aid Mr. Flournoy in his recovery, including a computer he could use to communicate. Because he is disabled, he might qualify for money through Medicaid, she said. After the 1999 incident, Mr. Flournoy spent five months recovering at Medical College of Georgia Hospital and three months at Walton Rehabilitation Services. But transportation became a problem for his mother, and they stopped going. Only recently have they begun looking for further options.

Doctors use technical words, such as expressive aphasia and verbal apraxia, to describe Mr. Flournoy’s conditions. The meaning is simple: He has trouble talking. The gunshot struck the left side of his brain, messing up his ability to communicate. He can’t seem to get his tongue to cooperate.

Mr. Flournoy understands what people say to him – reacting is the problem. He can write answers to simple questions. He can point to a banana if you ask him to. But don’t ask him to point to a banana, an apple, an orange and then the apple again.

Marti McElhone, who works as a speech pathologist at MCG Hospital, knew right away that Mr. Flournoy had “expressive aphasia.” She asked how he was doing. He mumbled something, but it was not a real response. “He mostly has difficulty expressing himself,” Miss McElhone said.

She said he appears to be a great candidate for augmentative communication, using a small computer that speaks. “You punch in the information, and when you’re done, you hit a button. And then it says something like, ‘I’m hungry. I would like a cheeseburger to eat.’” Miss McElhone siad. “He could express his wants and needs, which is a basic goal for someone like him who has had a severe brain injury.”

Therapy could help, but patients with the best chances have family support, personal dedication and repetition. Unfortunately, Mr. Flournoy has gone a long time without help. “It’s like having a broken arm. You need to excercise it to stimulate it,” Miss McElhone said. “Essentially, he’s broken his brain, and he needs stimulation.” Miss McElhone is preparing a report for Mr. Flournoy’s doctor. If the doctor agrees with her recommendation, Medicaid could fund the therapy and the computer system to help him communicate. “We’ll give it a shot,” she said.

Spend a few hours with Mr. Flournoy, and he seems very happy. In fact, he laughs a lot, almost uncontrollably, but that doesn’t mean he is in a good mood. Because of his frontal lobe injury, he sometimes acts like a child, but he makes it clear he doesn’t like people to talk about his getting shot. He jerks his good hand across his neck, indicating that the person talking should stop. “Since he got hurt, his temper (has been bad),” his mother says. “He gets angry quicker than he did before.”

Mr. Flournoy knows he has changed. He doesn’t like remembering how he used to be. It’s too depressing. A family portrait hangs on the living room wall in his home. After his shooting, he scratched out the eyes on his boyhood image.

He perks up, though, when people talk about his 5-year-old daughter, Precious Hawkins. With a heavy limp, he hurries upstairs to retrieve the most recent picture of her. Precious has moved to North Carolina with her mother, Mr. Flournoy’s ex-girlfriend. He doesn’t get to see his child much, but when her mother brings her for a visit, Mr. Flournoy is in heaven.

If he works hard at his therapy, Miss McElhone said, she believes he will be able to communicate with his daughter again. “Hopefully, we can get to a point,” she said, “when he can express ‘I love you.’”

Author: Jason Vondersmith

On the basketball court, where the scoreboard determines the truth and victories earn the trust, it all makes sense to Danny WInchester. Everywhere else, he still searches for answers. He may walk among the masses at Lewis & Clark College, but he thinks among the poets and priests and gods: Where lies the truth? Who can you trust?

Perhaps the person who brought him into the world sheds the most telling light on the mystery man of Palatine Hill. “Danny is one of the kindest, most unique, most tenacious, most courageous, most sincere, most loving, most Christlike people I have ever known,” says his mother, Linda. “No bias.”

Winchester’s story is better explained through feelings, interpretation, and theory than with words. It is either complex, or it is purely simple. He came to Lewis & Clark last year from his hometown of Sacramento, California, with an excellent 3-point shot, a red water jug, some head-scratching behavior, a Bible, a friendly disposition and plenty of life experience – including a traumatic automobile accident. He carries all of this and more – for a metaphysical journey to the celestial or the basketball team’s road trips to Salem and McMinnville.

Winchester lit up the Northwest Conference last season, shooting 47 percent from 3-point territory to lead the league. This season, he ranks second on the team in scoring at 15 points per game and leads the conference in 3-point accuracy again at 51 percent. Winchester, who comes from a family of achievers, prides himself on doing basketball best. “That is what I consider service to my community,” he says. “Playing ball, entertaining people.”

You don’t hear sports cliches from Winchester, 23, as you do with many other athletes. You hear words produced from deep thought. You hear genuine idealism and expressions of kindness and innocence. He bleeds introspection. Often, you hear only three words, accompanied by the perplexed look that has become Winchester’s signature. “I don’t know,” he will simply say. “There’s no mystery about Danny when you understand how he communicates,” his mother says.

Winchester has long suffered from an auditory processing condition, broadly described as aphasia, an at other times low-level autism. Originally, his parents thought he was deaf, and doctors performed surgeries on his ear canals and palette. Winchester would rarely talk and seemed oblivious to people around him, his mother says.

Today, he hears all sounds but often cannot block out extraneous noise or conversation, or cannot patch together words and formulate responses. You often need to repeat yourself around him. The problem comes and goes, and classroom work has been “a war zone,” according to one family member. “I don’t know how to describe it,” Winchester says. “The whole subject is best not to be talked about.” Even his father, a prominent cardiologist, has given up trying to pinpoint the medical reason for the condition, instead just cherishing his special son. “We have decided to put it behind us and hope for the best,” Mark Winchester says.

The Accident
“He was lucky to walk out of it alive,” says Linda Walker, referring to “the accident.” A driver rammed Winchester’s Suburban at high speed (50 mph, his father says) from behind us in the summer of 1998. The impact was severe enough to spin the Suburban around, and the other driver’s car caught on fire. Although dazed, Winchester dragged the man from the vehicle. Winchester needed only on-site care, although authorities say his vehicle nearly exploded.

Winchester, who attended UCLA the school year before, hasn’t been the same since, family and friends say. Neurological tests haven’t revealed any brain damage, Linda Winchester says, but “there definitely was a change in him after the accident. He did have the (auditory condition) before the accident. That’s why it’s so confusing to know cause and effect.” Danny says the accident did change his life. “Other than the fact it was a new experience…I got to see the dangers of driving on the road and how precious my life can be. I heard I was ‘this close’ to dying.”

He rarely drives anymore and prefers to walk great distances. A “party” frat boy at UCLA, he has given up the party scene. Soon after the accident, he began
reading his Bible everyday. “I think about it or read it every day,” he says.

A Spiritual Being
“He’s become very religious. Very spiritual. He’s very careful about materialistic things. Like, he doesn’t want a car or anything. Just the bare minimum,” says Jason Primes, best friend of Winchester and Doug Muraki, a close family friend and former pastor. “He had a conversion. He came to a personal knowledge of Jesus Christ, as evangelicals would say,” says Muraki. “Ninety percent of it’s helped him. Ten percent has hurt him. He’s taken quite literally some scripture.”

Muraki watched as Winchester became more introverted. Hoping to play basketball, he went from UCLA to USC for a term, then to American River Junior College in Sacramento, where he played for a term. “Now, he’ll carry a conversation,” Muraki says. “Two years ago, he’d just stare at you.”

“Still,” Muraki says, “there’s something in that personality, where we’d like to say, ‘Danny, come back to us. Get out of that cocoon.’” Mark Winchester has seen his son turn into an almost biblical character. “He has no sense of want, with a minimal level of trappings,” the father says. “He’s almost the opposite of egocentric, in that he’s almost trying to live a monastery lifestyle.”

WInchester has studied the Bible, taken Buddhism classes in school, and now attends a Mormon church. Teammate and friend Adam Merino has urged him to go to a Catholic church with him. But the “Church of Danny” serves him just fine. Winchester meditates every day, and for up to 45 minutes before each game. “Religion and meditation are one for me,” he says. “I look at walking around as one big meditation.”

Simple and Quirky
“It’s not Kool-Aid. No Gatorade, no beer. Just water – Aquafina. I hate to cramp,” says Danny. Almost everywhere he goes, Winchester carries his big red water jug with him. Safe, good-tasting water, he says, is the best way to hydrate.

Students have seen him meditating in the rain. Before games, he has been known to do yoga stretches for an hour under a hot shower in the locker room. “I just like the feel of water,” he says. He rarely dries himself.

He ofter walks around wearing only his practice jersey and shorts. He almost always wears his trademark parka. He has been know to give most of his clothes to the poor. For a psychology experiment, he spent one day shirtless, just to see how people reacted. Rather than sit and chat with teammates, he’ll find someone different everyday during lunch and sit next to him or her. “There’s a lot of people I feel like I’m called to talk with, to share life experiences with and not be alone,” he says.

Teammates have nicknamed him “Mystery House,” after a tourist attraction known as the Winchester (no relation) Mystery House in San Jose, California. Winchester also goes by the nicknames “DSW,”"android,”"The Rifleman,” and “3-D Man on a Mission.” The three D’s stand for drive, draw, and dish – basketball parlance – but the nickname also fits Danny’s multidimensional search for meaning.

Other Lewis & Clark students spot him jogging at 6 a.m., even on game days. He likes to stay active. He has hiked France, Spain, and Australia, and often goes hiking at home, with no destination in mind. He likes the solitude he gets outdoors. “Danny will often not utter a word in a conversation,” says his brother, Brandon. Winchester spent time on a farm in Montana as a youth and has some Amish in his background, according to his mother. “Maybe, deep down, he’s yearning to be Amish!” she says. “He is a naturally simple person.”

A Family Bond
“This is a wonderful, nurturing family. Linda is a sweet gal, an enabler. I hope we’re not seeing so much overprotection that it ends up hurting him,” says Muraki. Linda Winchester has been to several Lewis & Clark home games, and she frequently talks on the phone with her son. Muraki says, “She has a tendency not to push him, but to do everything for him. She’s afraid if he takes anymore hits to his self-esteem…she’s afraid of severe consequences.”

Perhaps Danny has always had to live up to the successes of others. His mother is an attorney. His father is one of Northern California’s leading cardiologists. And Brandon, 26, who Danny followed to UCLA, is a medical student at the University of Virginia. “We’re talking about a family where everything it does, it achieves,” Muraki says.

Danny’s specialty has always been basketball. But, after a stellar run at Sacramento’s Rio Americano High, where he was one of the most popular kids and was named “Dream Guy”, his hoops career hit the skids. He wanted to play at UCLA, but the Bruins didn’t offer a walk-on tryout. He didn’t make the USC team. He played for a semester at American River, then left. He looked to the Lord and isolated himself. His recent success at Lewis & Clark has helped him come out of his shell. “We’re astounded with what he’s done,” his mother says. “He’s never given up. His tenacity is amazing.”

Mark Winchester says his wife nearly came to tears when the couple received Danny’s latest report card. After five years of so-so grades and academic struggles, Danny pulled two B’s and one C. “For him to be independent and doing so well…it’s so encouraging,” his father says.

Basketball – His Domain
“The mechanics are so pure. Beautiful shooter. If I’ve seen him shoot 1,000 shots, his arch hasn’t changed an inch,” says Bob Gaillard, Lewis & Clark basketball coach. “Danny’s ability to shoot the basketball is second to none,” his brother, Brandon boasts. “But it’s not a gift. He has a shooting practice regimen that borders on obsessive. When he was little, he’d drive our mom nuts because he’d run around the house in his underwear, dribbling a basketball and shooting game-winning 3 pointers.”

Lewis & Clark teammate Kristofer Speier says Winchester has the best work ethic on the team. “He’s the last guy out there after practice,” Speier says. Danny’s father played for Dean Sempert at Lewis & Clark before transferring to Stanford. Danny prepared to play at L&C by working out in Sacramento with Al Biancani, the NBA Kings’ strength and conditioning coach. Biancani has trained him for six years. Danny also worked out last summer at the hoops camp sponsored by Kings guard Mike Bibby. All those repetitions have made Danny the deadeye shooter he is, Biancanni agrees. “I love coaching a person that dedicated,” says Gaillard, who recruited Danny out of high school. “Yes,” Danny says, smiling after hitting 6 of 10 shots from three point range during a recent game. “I’m pretty confident when I have an open shot.”

Seeking Truth and Trust
“You can’t help but like the kid. When you talk to him, you don’t quite know what he’s thinking. I won’t interview him on the radio. Sometimes he can’t process and respond, and it might turn into an embarrassing situation,” comments Bill Johnson, the basketball broadcaster for the L&C basketball team.

“I’m in a community now, Danny says, “seeing more people, more often. I’m on guard a lot, because I’m not trusting people. People talk and I’m careful about what I say. It’s the he-said, she-said thing. I don’t know if I’m scared of what people say about me, but I have a fear of not telling the truth and appearing fallible.”

To find trust and truth – these are Danny Winchester’s goals in life.

Author: Rachel Grace Toussaint

When David Halloran suffered a stroke three years ago, doctors didn’t give him but two hours to live.

Halloran, now 54, defied the doctors, but the stroke didn’t leave him unscathed – he now contends with aphasia, an acquired communication disorder that impairs a person’s ability to process language, but does not affect intelligence. Aphasia impairs one’s ability to speak and comprehend others, and most people with the disorder experience difficulty reading and writing.

In addition to having aphasia, Halloran is paralyzed on his right side.

A Newmarket, NH resident who served three terms on the Town Council (one as president), Halloran is an active man. In fact, one might even say that he’s an activist. Halloran proposed and helped implement an international aphasia symbol that was unanimously approved by the National Aphasia Association last month. The symbol, to be unveiled by the NAA at its annual conference this spring, will be a sticker that adheres to the window of a vehicle.

The quest for this symbol was born of Halloran’s own experiences. His wife Rosemarie said that after his license was reinstated, Halloran was driving through Dover and a police officer pulled him over because his vehicle’s tail light was out. When the officer approached Halloran and tried to communicate with him, he noticed Halloran’s difficulty speaking and thought Halloran was drunk.

“When (David) went to take out his wallet (to show the officer a card that explains his disability), the officer got angry. Then he saw the handicapped sticker,” Rosemarie said.

After the incident with the police, Halloran went to his aphasia support group at Catholic Medical Center in Manchester, and told his fellow group members that something needed to be done to prevent the same situation from happening to other aphasia victims.

“People in the group said, “Well, what can we do?” and Dave said, “Well, we have to do something,” Rosemarie said.

So the Hallorans went to Washington DC last spring for NAA’s Speaking Out Conference. They began telling others at the conference about Halloran’s idea, and people from Canada, Japan, and the Netherlands were ready to do their part.

The Hallorans said they weren’t expecting such a response.

“We (the aphasia support group) were going to do it ourselves, but the NAA wanted to run with it,” Halloran said.

The support group did most of the legwork. One member, who works as a graphic artist, designed the symbol, and then modified it according to the NAA’s guidelines.

The symbol, according to the Hallorans, will be available free of charge through the NAA. Their hope is that awareness of the symbol will spread through a grass-roots movement. Members of the support group, and others interested in campaigning the symbol, will introduce it to police officials local to their residences. The Hallorans have already introduced the concept to Rodney Collins, Newmarket chief of police, and said he intends to educate his force about it.

“Its a start, just like anything else,” Halloran said.

By 2004, it’s likely that it will no longer be just a start. The symbol is slated to be the key topic at the NAA’s 2004 conference.

Although aphasia generally occurs as the result of a stroke, it can also be caused by head injury or other cerebral disorders. Halloran can understand people well, yet has difficulty expressing himself.

“When I first went into the hospital, I couldn’t say anything. The only thing I could say was “coffee”, and I hate coffee,” Halloran joked.

But through the years, Halloran has been involved in speech therapy at the University of New Hampshire, and he has come a long way.

Along with his international activism, Halloran has been involved locally – he recently did a speech at UNH for occupational therapy students.

Halloran’s biggest hurdle is dealing with numbers. Ironically, before his stroke, Halloran was an investment broker. He had taken a year off work to build a new home for Rosemarie and him when the stroke occurred. Now, he and Rosemarie are slowly finishing the house together.

“I have to admit it, I’ll never be the same, but it’s going to be OK,” Halloran said.

Author: bowland

Aphasia – not the sign of intelligence?

Aphasia often affects stroke surviivors and is a language disorder that affects the ability to communicate. Someone with aphasia may have lost the ability to retrieve and speak the appropriate word or write. They may also have difficulty understanding speech, reading, and gestures.

Each stroke survivor with aphasia has different speech and language problems. The amount of trouble is related to where and how severe the brain injury is.

Aphasia does not equate speaking with intelligence. It’s sad how people with kind intentions can be.

“Oh, so she has aphasia. What in the world is that? You mean she can’t talk? Just how badly is her mind affected?”

My mind is not affected. My mind is as clear as ever. Only the ability to communicate is gone.

When I was in the hospital, I heard them say severe aphasia…. I did not know I would be dealing with it a year from now.

But I am getting better and better.

Author: John Stradinger

Our father, husband, and to many of you a dear friend, John Stradinger III, had a severe stroke in June of 1995. The stroke initially left him unable to move or speak.

With the help of friends, we moved him from a hospital in Greenville, Mississippi to The Institute of Rehabilitation and Research (TIRR) in Houston, Texas. At TIRR he received post acute physical, occupational, recreational and speech therapy. Due to six months of intensive therapy at TIRR, he progressed in many areas. After arriving at TIRR on a stretcher, he left with the ability to walk short distances with a cane.

Although we were encouraged by his physical improvements, his communication skills were still severely diminished. Doctors diagnosed him as having Aphasia: a loss or reduction of language skills due to a brain injury.

Upon returning to Mississippi, he continued physical and speech therapy on a daily basis. His physical improvement continued; however, his Aphasia kept him and those around him extremely frustrated. It was at this point that we realized that he desperately needed special therapy to help him overcome the communication barrier that aphasia had created.

For the next several months we researched what we, as a family, could do and what treatment programs existed to improve his speech and other communication skills. Our search led us to the University of Michigan’s Communicative Disorders Clinic and their Residential Aphasia Program (“RAP”). After several months of working with RAP and our insurance company, we were able to enroll him in a six week residential course at RAP. Mother accompanied and assisted him in Michigan. At RAP he made tremendous strides that far surpassed all progress he had made in the preceding eighteen months. The unique methods of therapy and treatment available at RAP made the difference. The RAP treatment method has several distinct features:

the treatment program is long and intense (approximately 6 hours per day)
most patients are usually one to two years post stroke (beneficial because most stroke victims experience some form of depression immediately after their stroke)
the program focuses on living with Aphasia and using multiple communication mediums
patients interact with and encourage each other (since patients are in different stages of recovery, patients can see tangible proof that further recovery is possible)
the program includes pre and post therapy testing used to document each patient’s progress

After his first six weeks at RAP, his documented progress was remarkable. He still had a long way to go, but his RAP therapists were very encouraged and recommended that he attend another session to build upon his previous improvement. Dad was also very pleased at his progress and wanted to attend another session. With his new found confidence, he even insisted upon attending the second session alone, living independently in the RAP dorm.

While Dad attended RAP, we became very encouraged by his progress and began to further educate ourselves on aphasia, particularly on the resources available to assist aphasia victims and their families. Our search for information led us to some very talented people within the aphasia treatment community. They included Ms. Jackie Hinckley, Director of RAP, Ms. Karen Klein, Executive Director of the National Aphasia Association and Dr. Audrey Holland, Head of the Department of Speech and Hearing Sciences at the University of Arizona. These knowledgeable and experienced leaders informed us of the many issues aphasia victims face and the stumbling blocks that hinder most aphasia victims from learning about and receiving treatment. They include:

survivors of aphasia have difficulty being supporters or advocates of treatment since most have difficulty communicating
there is an untrue, yet still widely held, myth that the adult brain does not have the ability to relearn many skills
there are few intensive treatment programs and those that exist are not widely publicized.

Our family’s experience with aphasia has been and continues to be a challenge, but we feel very lucky to have had the support of friends, to have had adequate financial resources, to have identified knowledgeable experts and to have found and been accepted into successful treatment programs. We also realize that our family’s aphasia experience is unusual. Most of the one million families affected by aphasia are not as fortunate. They lack the resources, the support structure and the knowledge as to how to cope with aphasia. It is our family’s desire to increase our society’s awareness of aphasia and the available treatment programs and to foster additional research into developing new aphasia treatments. Such awareness, coupled with continually improving treatment methods, will allow aphasia victims to receive the appropriate treatment in a timely manner. Successful treatment will result in more productive and independent aphasia victims, less stress on the families of aphasia victims and a reduction in the long term medical care costs currently resulting from aphasia.

Author: Sheila

Hi, I have Aphasia.I could’nt talk, read spell, understand and I thought there was no hope for me. I was 35 yrs. Old March 7th it will be 5 yrs. Thank to god of mothers.She never gave up with me.I went to speech for off and on a couple yrs.I never heard of Aphasia until it happened to me.I work hard reading, writing, spelling and all the things you take for granted.I proof read this a few times, i hope this is understood.
Thanks for this site!! Sheila

Author: David Dow

David Dow recently won an art contest. This may not seem like a big deal, but it is. For 12-year-old David, the award he received was much more than simple recognition of his talent. It was an affirmation of the fact that there is life after a stroke.

David’s watercolor painting “Autumn in Ohio” was one of four paintings selected to appear on the “Seasons of Ohio” note cards produced by Very Special Arts Ohio (VSAO).

David’s entry competed against nearly 400 other submissions and of the four artists recognized, David was the only child. David and the other winners were honored at a luncheon at the home of Governor George Voinovich in May.

VSAO promotes art, education, and creative expression in children and adults with disabilities.

David was not born with a disability. His childhood was interrupted abruptly when he suffered a massive stroke two years ago. David and his parents were on vacation in Las Vegas in March 1995 when the stroke attacked his brain. “We went on vacation for three days and ended up coming home almost three months later,” his mother, Carol Dow-Richards, said.

David spent the first few weeks after his stroke in a hospital in Las Vegas. He and his family were then flown to the University of Michigan where he spent more time in a hospital bed.

While strokes are relatively common in adults, they are very rare for children. Mrs. Dow-Richards said that one in six Americans will suffer a stroke at some point in their lives but only 10 percent of strokes occur in individuals under the age of 65.

David and his family did not know until he had his stroke that David has a very rare disease called Moya Moya. There are only 100 diagnosed cases of Moya Moya in the United States, David’s mother said. The disease causes blockages in the brain’s blood vessels and results in stroke.

David’s mother also said no two strokes are alike. Some may be very minor while others are extremely debilitating, sometimes even fatal.

David’s stoke left him completely paralyzed on his right side at first. He could not walk or talk at all. He underwent two brain surgeries, the first in May of 1995 and the second six months later. David has also undergone intensive therapy since the stroke. He participates in occupational and physical therapy every week. Speech therapy has helped him to regain the ability to talk, but he still suffers from aphasia, an acquired disorder not uncommon in stroke survivors that affects a person’s ability to communicate.

David can walk now, but still has physical limitations on his right side. He was naturally right-handed and had to learn to use his left hand.

David had many obstacles to face, but he and his family worked hard. His mother sought as much information on stroke recovery as possible and found that it was very important to exercise the brain. “We had him on a fast pace of brain stimulation for over a year. David has done far better than any doctor led us to believe, and he is still improving,” David’s mother said.

David had begun painting with watercolors when he was 8 years old. After the stroke left him unable to participate in many physical activities like rollerblading or bicycling, he focused more of his attention on painting. He learned how to paint with his left hand. David said it was not hard to teach himself to use his left hand, although his mother had been concerned about David trying to paint right after the stroke.

“He came home from the brain surgery and had almost no speech at all. Things were really frustrating for him, and I was against it. I thought it would be frustrating, but he really wanted to paint so he did,” Mrs. Dow-Richards said.

David picked up painting with his left hand rather quickly, and his watercolor teacher, Debbie Marlowe, said he has made tremendous progress. “In the beginning, right after the stroke, he had to do straight lines and zig zags and curves just to get the use of the brush back,” Mrs. Marlowe said. “But he is progressing faster and faster. He always wants to try new techniques, new methods. His subject matter is getting more difficult.” Mrs. Marlowe said David is very talented and advanced in his observations and is painting at an adult level.

David hopes to win more contests and will begin selling his art. He will sell his paintings at Harrison Rally Day and his note cards are currently for sale as well. David and his mother want to use David’s art to teach other people about stroke and aphasia. With the help of his mother, David has written and illustrated a book entitled “Brain Attack” about his stroke and recovery.

He has entered it in a competition and hopes it will be published. His mother said it is very important that books like David’s are published because so many people do not understand how to deal with people who have had strokes, especially those who are aphasic.

For David and many others, aphasia can mean being isolated and ostracized. David’s mother said most people do not understand that aphasia is a language difficulty and not a sign of lesser intelligence. Intellectually, David is still the same bright boy he was before the stroke; he just has trouble expressing and understanding concepts that used to come easily to him. Through his art, David is focusing on what he can do rather than what he can not and is reaching out to others with a message of hope.