Thursday, January 17, 2008

Family matters

There is one call I have always dreaded. When my dad sounds stressed on the phone, I hope the cause isn’t her. When I call and no one answers, I want to race over to the house and make sure everything is all right. It’s been this way for a long time, but I still hoped nothing bad would ever happen. But one night in July, I called my dad and he sounded terrible. My elderly grandmother, had just had a stroke.

There she was — lying helplessly in a hospital gown, away from home, unable to communicate. She was not the grandmother I knew. To see such a strong woman reduced by nature was humbling and enraging at the same time.
My grandma will turn 87 in November. She was born in the Roaring ‘20s, lived though Dust Bowl Kansas during the Great Depression, married a soldier after World War II and raised a family on a farm in Kansas. It was hard to believe that someone who had lived through all that could be sidelined by a couple tiny blood cells.

When I was younger, my grandparents lived 30 minutes away in Baldwin City. I was the grandchild they indulged, the grandchild who was given a dollhouse for Christmas, the grandchild who was taken to the playground whenever she so desired. In 1998, my grandfather suffered a hemorrhagic stroke and died a few months later from an infection. But my grandma didn’t let her life break down. Instead, she became an important role model to me. Just a year after my grandpa died, my parents divorced. next.....

If Steven Colbert had Aphasia

Blissfully, both The Daily Show and The Colbert Report are back on the air following 10 weeks of being dark from the writers' strike. They are both at a bit of a loss for words, but they are working around it. Jon Stewart cut a promo for tonight's Daily Show by grunting and gesturing (they also changed the graphic from THE Daily Show to A Daily Show -- too cute). Steven Colbert, in his opening instead of his usual 3 camera shot preview of the show, simply said "Tonight...". They got the message across but didn't use words to do it.

This is what people with aphasia do.

I spent an hour today hanging out with 2 people who have such severe aphasia that they simply have no words that consistently come to them. Therapy is often working on finding the words, but also on figuring out how to communicate when you can't talk and you can't really write very well. It involves training on things like gesturing (a pretty hard thing to do if you don't have a good mental image of the concept you want to relay, or a hand that does its own thing),drawing (ditto), remembering to look around the room or in a notebook for things to point to, and writing what you can, even if it is just the number of letters in the word or the letters you can figure out. It also involves training a communication partner to be a better guesser and question-asker. It is hard for both the person with aphasia and their communication partner.

But today, one of them got the idea beautifully. When shown a picture of Michael Jackson that her communication partner couldn't see, an 80+ year old woman pointed to her nose then got up and tried to moonwalk. Her communication partner, who also has severe aphasia, laughed and applauded.

Some days I'm the luckiest girl in the world.

The picture above is affectionately called "The Cookie Theft Picture", and is part of a standard battery to evaluate aphasia called the Boston Diagnostic Aphasia Examination. The client is asked to describe the picture in sentences, either verbally or in writing.

Opening hearts to open doors

SPEARFISH - In October, a disabled Spearfish couple reached out for assistance in order to remodel their current home to make it handicap accessible and therefore a lot safer for both of them to live in. Today, that dream has become a reality ... it is just a bit better than expected. In February 2008, the Naumann family will open up their doors to a brand new home.
Michael Naumann suffers from AVM, arteriovenous malformation, and his wife Julie suffered from a Grand Mall seizure in 2005 that left her left leg permanently disabled. Black Hills Home Builders designated this year's Care Project to reconstructing their current home in order to make it handicap accessible, however, they ran into a few problems.

In search of lost words

Damage to the brain may have taken their language skills but time at Toastmasters helps get them back
From Friday's Globe and Mail
December 7, 2007 at 8:40 AM EST
It's Friday morning, and Jack Geller has 60 seconds to address his weekly public speaking group, on the topic: What is your favourite opera, and why?

It should be an easy task for the former lawyer and one-time acting head of the Ontario Securities Commission, a classical music fan who, at 77, has decades of arias dancing through his head.

"This one is very good," he says, his eyes lighting up behind thick glasses. "This one are quite different."

His hands gesture toward unseen divas, as he tries to pin down their movements with words.

"This one is very close," he continues haltingly, the minute ticking by. "I was very surprised."

And then, just before a red light flashes to indicate his time is up, Mr. Geller does the one thing he can to really explain what his favourite opera is and why - he sings.

"Laaaaaaaaa," he intones deeply, his arms rising in triumphant finale.

His audience nods and bursts into loud applause.

This is the Toastmasters International Aphasia Gavel Club, a collection of men and women whose powers of communication have been destroyed by a stroke, tumour, bike accident or car crash.

With damage to the left hemisphere of their brains, their ability to talk, write and even comprehend language has been affected.

For some, words have crept back slowly, allowing them to put pen to paper, voice to thought. Others, like Mr. Geller, who suffered a stroke in 2002, find language elusive even years later.

And yet they come together each week to practise their public speaking, a pastime even the most able-bodied people fear.

To this group, facing a captive audience is less frightening than addressing an impatient world.

"The thing they're most afraid of is that people will think they're stupid or mentally ill or drunk," said Susan Watt, a speech-language pathologist at Toronto's Aphasia Institute, which hosts the meetings. "When they go into that room, they don't have to explain."

The room is a generic meeting space, where former university professors and entrepreneurs, engineers and philanthropists can rebuild their confidence through verbal trial and error.

Like many of the approximately 100,000 Canadians

living with aphasia, they

are linked by what they have lost - not just the ability to

co-ordinate mind and mouth, but the existence they once shared as professionals, one of structure, drive, and competition.

Mr. Geller's wife, Sybil, learned of the program while he was still in hospital after his stroke. At the time, she looked at her husband and thought, "only the shell remains."

"He was a communicator, a teacher, a mentor, a negotiator," she said of his life before.

Today, Mr. Geller has once again taught himself to read, count and get out what words he can. His enthusiastic delivery makes up for the vocabulary he lacks.

"Aphasia is not a diminishing of intelligence," said his wife. "His ability to analyze a situation has not changed."

But at the aphasia institute is still where he is most

secure, among those who do not remember the time

when his words flowed with ease.

"These people come from different walks of life, but

they have three things in

common," said Ms. Geller. "Guts, incredible intelligence, and a sense of humour."

Each meeting begins with a joke, and former pharmaceutical executive Bob Jones is telling a dirty one about a vicar and a woman who has sex every time she gets drunk.

If aphasia reduces many people's speech to a slow trickle, its byproduct in some is a deadpan comic timing that often brings the group to hysterics.

"Well," says Mr. Jones mischievously, delivering the punchline. "Let's pour you a drink ... and see ... how I ... can help."

Absent is the bluster and bravado of most public speaking forums; aphasia sufferers use the words they can muster to express things they really mean, language demonstrated at its most basic and poetic.

When Harold Shield describes his favourite movie, The Sound of Music, he does not list its stars, but remembers that it made him "feel wonderful."

Required to describe a local landmark, Deanne Atkinson says she would spruce up Casa Loma.

"In Toronto when we see old things ... we should cherish them," she says. "Cherish what you have."

They listen to one another intently, ready to jump in if another member stumbles.

As 85-year-old Betty Wangenheim grasps for the starting point of a cross-country trip, someone calls out, "Airport?"

"No, it's on the ground," she says.

Train station?

Yes, train station.

Chris Bernhard, who had a stroke two years ago at age 40, must talk for one minute about a Toronto theatre, but sits down after seconds.

"My mother bought me tickets, but I can't remember why," he says. "All right, I'm stuck. Thanks."

The group claps for everyone, but does not condescend. They vote for the best short presentation each week, and formally critique the longer speeches, commending Ms. Wangenheim's lack of written notes and questioning Mr. Jones's "so-so" humour.

If some excel beyond others, it is due to the complexity of their injury, not their confidence at the podium.

"Good morning!" says S. M. Tse. It has been eight years since his stroke, but the 56-year-old has mastered just this one phrase. When Ms. Watt first met the diminutive man, she thought she recognized him as a former patient. He was actually one of her professors at the University of Toronto.

Across the table is Leon Kondiah, an engineer until three years ago, when the car he was riding in was hit by a drunk driver. Now the 30-year-old does not work, and has a large dent in the left side of his forehead where part of his skull was removed.

Dennis Brans was a lawyer before his stroke, which has left him with the slightly stilted cadence of Christopher Walken. He used to be afraid of public speaking, a hang-up that was wiped away along with his former workaholic life.

"I would never," he said of joining Toastmasters back when he could really speak. "I couldn't."

Although some family members come to watch the weekly sessions, Mr. Geller's usually stay at home. One of his four children, a lawyer, says she would be terrified to speak in front of the accomplished group. His wife refrains because there are so few things that are now her husband's alone.

"Until he was 72 he was the one that people looked to, to take charge, to make decisions," Ms. Geller said. "Now he has to look to me to speak for him. Can you imagine?"

After 56 years of marriage, it has been magical to see him regain his speech, his confidence, the pleasure in his days, she says.

"It's like sunshine. It's given him back his life."

During a coffee break at one meeting, Mr. Geller nods enthusiastically when asked if he enjoys public speaking.

"At first it's like this," he demonstrates, opening and shutting his mouth without making a sound. "And then ... it gets better."

Probing Question: Why can a stroke victim remember some things and not others?

Courtesy Penn State Neurosurgery
A CT scan showing a large stroke in the right middle cerebral artery territory.
By Gigi Marino
Research Penn State
The brain is the most beautifully complex organ in the human body. Three pounds of evolutionary genius, the brain provides both the hardware and software for controlling all behavior through an intricate system of synaptic messaging. But for all of its complexity, the brain is sustained by oxygen-rich arteries and blood vessels and can't survive without the free flow of blood to all of its lovely lobes and fissures, which is exactly what a stroke inhibits. When someone suffers a stroke, blood flow to that person's brain suddenly stops. The location of the stroke, how long the blood flow was interrupted, and the extent of the permanent damage will determine the stroke victim's long-term prognosis.
Strokes are the third leading cause of death in the United States, with at least 80 percent classified as ischemic, occurring when blood flow to the brain is interrupted, usually as a result of a blood clot or embolism. The other type of stroke, hemorhaggic, is caused when blood vessels break and leak into the brain and damage brain tissue, and is more deadly. What some people call "mini-strokes," TIAs, or trans-ischemic attacks, are not strokes at all, although they provide valuable warning signs for full-blown strokes. A true stroke — however stark or slight — leaves its mark on the body, or mind.

According to Kevin Cockroft, associate professor of neurosurgery and co-director of the Penn State Stroke Center, the damage caused by a stroke depends on what vessel is occluded and what territory is affected. "That middle cerebral artery is the common artery on the hemisphere of the brain. If the whole territory on the brain is damaged, it can lead to weakness and paralysis, as well as language dysfunction if it's on the left side," he said. "But some small branches of that artery may lead to language impairment rather than weakness."

Many stroke victims experience aphasia, the loss of speech or the inability to understand speech. Anomia, the inability to name things, is a subtype of aphasia. "The other thing that comes into play is memory and retrieving memory," said Cockroft. "It becomes difficult for stroke patients to make new memories, whereas they can be very good about remembering things in the past."

Cockcroft said he tells the families of stroke patients to expect two things: "One, there will always be a personality change, maybe so subtle that only the family notices, or so pronounced that everyone notices. Second, they will always have some problems with their short-term memory. How long it will last is hard to say."

For some patients, short-term memory is so impaired that they can't form new memories at all. For instance, they can't remember what they ate for breakfast, yet they are able to recall something they knew years ago, such as the nickname of New Orleans. This inability to form new memories is called anterograde amnesia — a condition that provided the plotline for the movies "Memento" and "Fifty First Dates," although anterograde amnesia is much more common as the result of a stroke than a concussion.

Cockroft emphasized that there has been a lot of progress made in stroke care in the last decade, but public education remains a key factor in improving patient outcomes. "It's important to think of a stroke as a 'brain attack,'" he explained. "It requires immediate attention." Every minute counts: If blocked blood vessels can be cleared within three to six hours, the patient's odds are greatly improved. Within that crucial window of time, clot-busting drugs can be administered intravenously or intra-arterially. If the patient seeks medical care six hours or more after the initial stroke, or in cases where the clot-busting drugs don't work, there are still other options, Cockroft added. After eight hours, a Merci retrieval device, which looks like a corkscrew, can be used to fish out a clot. After 10 hours, a balloon catheter can be used to increase circulation around the blood vessels damaged by the stroke.

The crucial thing to remember, noted Cockroft, is "If you're having numbness, weakness, loss of vision, or sudden headaches, you need to get to the emergency room."

Wednesday, January 16, 2008

As Diseases Sneaked Up on Woman, the Piles of Clutter Grew

Joyce Dopkeen/The New York Times

Before Katherine Gamble sought professional help, her piles of clothing and books had taken over five rooms in her home.

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Published: January 16, 2008

She simply shut the door. Maybe that would keep everything inside. The debris. The anxieties. The worn furniture. The sadness. The stacks of yellowing papers. The tangle of once-fine clothes. The jumble of interwoven memories of a life past. If she shut the door, it would all be hidden away, and she wouldn’t have to confront It — whatever It was.
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But Katherine Gamble soon discovered that the door could not contain her depression or its physical manifestation. The haphazard piles soon spilled out of the bedroom into the rest of her elegant Hamilton Heights apartment, where even the French doors could not keep them at bay. And so her world shrank. Where she could walk, where she could sit, where she could be by herself — all that was eroded by the encroaching waves of clutter. It filled two bedrooms, the library, the kitchen and the bathroom. Soon there was only the living room left, if only because her mother had emphasized to her to make sure to have a place for guests to sit.

Ms. Gamble could not throw anything out. Her apartment became an archaeological study of a life in decline. There was the houndstooth-check jacket purchased from Lord & Taylor, from her days working as a computer trainer on Wall Street. Houndstooth is coming back, Ms. Gamble thought to herself. There was an old vacuum cleaner and two dusty Persian rugs that cost $5,000. It took a long time to pay off those rugs. A rag doll named Molly, missing a sock, for a goddaughter who is now 27 years old. They never figured out where the sock went. A record player she had not used in 10 years because the needle was broken and she had not gotten around to replacing it.

Then there were the mounds of aging books: the African American encyclopedia from 1979, an echo of her college days at Cornell University, when she was a fresh-faced girl from Detroit; “Love in the Time of Cholera” by Gabriel García Márquez; Isaac Asimov’s Foundation trilogy. She had loved books since her third-grade teacher, Mrs. Van Vleck, gave her a volume of fairy tales by the Brothers Grimm that was so big her arms could not carry it.

But she can no longer read; her diabetes has affected her eyesight. She cries when she thinks about her books.

Seven years ago, Ms. Gamble sank into depression around the time she and her husband divorced. As her health declined, she was hit with strokes in 2006 and 2007, leaving her able to move only her head. The second one left her with aphasia, a form of brain damage that makes it hard for her to understand numbers.

“I can’t remember my phone number or my date of birth,” said Ms. Gamble, now 50. “But I have been practicing. I have those things written down in my pocket.”

The aphasia means she also cannot make her famed banana pudding — which she learned to make at age 8 from her Aunt Eunice — because of all the measurements involved.

“The concept of how much is a half a cup is way past what I want to figure out,” she said.

She was in a nursing home from February to June of 2007 because of the second stroke. When she returned home, the clutter was still there. The doctors tended to her diabetes, her aphasia and her dialysis. A home aide makes sure she takes her confetti-colored set of daily medication. But what Ms. Gamble really needed was a decluttering service, decided the social workers from the Service Program for Older People, a member agency of the Federation of Protestant Welfare Agencies, one of the seven beneficiary agencies of The New York Times Neediest Cases Fund.

Over two weeks in July, workers came four times. They went through the apartment, piece by piece. There was so much refuse that they had to make special arrangements with the Sanitation Department to haul it all away. Ms. Gamble has her apartment back. The total cost, paid for by the Neediest Cases Fund: $1,050.

And the workers were sensitive enough to save the most precious of her memories, Ms. Gamble said. “They didn’t throw away my pictures.”

BRAINWAVE asks how art, music, and meditation affect