Friday, October 24, 2008

Friday, October 17, 2008

Regional EMS Council of New York City Designated Stroke Centers

Regional EMS Council of New York City Designated Stroke Centers
Bronx County

* Bronx Lebanon Hospital Ctr - Concourse Division
* Jacobi Medical Center
* Lincoln Medical & Mental Health Center
* Montefiore Medical Center-Moses Division
* Montefiore Medical Center-Jack D. Weiler Hosp. of Albert Einstein College of Medicine
* New York Westchester Square Medical Center
* Our Lady of Mercy Hospital Ctr
* St. Barnabas Hospital

Kings County

* Beth Israel Medical Center, Kings Highway Division
* Brookdale University Hospital
* Brooklyn Hospital Center, The
* Coney Island Hospital
* Kings County Hospital
* Long Island College Hospital
* Lutheran Medical Center
* Maimonides Med Center
* New York Methodist
* NY Community Hospital
* University Hospital of Brooklyn - SUNY University Downstate
* Victory Memorial Hospital
* Woodhull Medical and Mental Health Center
* Wyckoff Heights Medical Center

New York County

* Bellevue Hospital
* Beth Israel MC, Petrie Division
* Cabrini Medical Center
* Harlem Hospital Ctr
* Lenox Hill Hospital
* Metropolitan Hospital Center
* Mount Sinai Hospital
* New York Downtown Hospital
* New York Presbyterian Hospital, Columbia Medical Center
* New York Presbyterian Hospital, Weill Cornell Medical Ctr
* North General Hospital
* NYU Medical Center
* St. Lukes Roosevelt-Roosevelt Division
* St. Lukes Roosevelt-St. Lukes Division
* St. Vincent's Midtown Hospital
* SVCMC - St. Vincent's Manhattan

Queens County

* Elmhurst Hospital
* Flushing Hospital
* Jamaica Hospital Medical Center
* Long Island Jewish Medical Center
* Mt. Sinai Hospital of Queens
* NY Hospital Medical Center
* North Shore Forest Hills Hospital
* Parkway Hospital
* Peninsula Hospital
* St. John's Queens Hospital

Richmond County

* Staten Island University Hospital-North
* SVMC - St. Vincent's Staten Island

Thursday, August 28, 2008

Stroke Survivor

Dina Pagnotta, Stroke Survivor

Following is Dina's story, as told at the Heart of New York gala at the Waldorf=Astoria on March 19, 2008.

Dina Pagnotta

I am honored to be here this evening as we continue our crusade in the fight against heart disease and stroke. We all think of stroke as being an affliction of the elderly but approximately six years ago I had a stroke. I was 30 years old, I was and still am a runner, I had no risk factors, no family history. I was attending a seminar and began to feel faint. I took a sip of water, but oddly enough I couldn’t swallow. I began to shift toward my left side; my left arm wouldn’t move; my speech was slurred, and I began to cry. The next thing I knew, I was in an ambulance. The paramedic was calling the ER about a possible incoming stroke patient. When I arrived at the emergency room with what would be considered classic stroke symptoms, left-sided weakness and slurred speech, the staff didn’t immediately recognize what was wrong with me. I was too young to have a stroke.

Youth and stroke are not associated with each other. I abruptly discovered that stroke does not discriminate. My stroke was caused by a congenital heart defect that I was unaware of. Fortunately, I was properly diagnosed and received wonderful medical care. Although I recovered completely, physically, I understand that stroke survivorship is a life-long journey.

I’ve had my heart repaired through a 45-minute procedure that would have required open heart surgery if not for the current advances in medical technology. A titanium disc now sits between the chambers of my heart. There are many others who do not share my good fortune. There’s Sam, 34, who was starting medical school in September but had a stroke in June and now cannot articulate his thoughts; there’s Ginger, 36, whose 4-year-old daughter wonders why her mom can’t play with her as she used to. There’s David, 44, who was at the height of his career as a graphic artist but because of his stroke can’t sit at a computer for more than 5 minutes at a time. And there are so many others. What is equally disturbing is the lack of research in the area of stroke and the younger population. The data is paltry at best.

Stroke and heart disease are a major global health problem that affect people of all ages and demand primary prevention. They necessitate increasing public awareness and education. They require increased research. They require questions and answers. They require change. Having survived this traumatic event has inspired me to pose questions and seek answers. I can’t possibly convey how fortunate I feel to have gone through this experience physically unscathed but having acquired insight into this affliction and a passion to affect positive change.

Gandhi was quoted as saying: “Be the change you want to see in the world.” Change is everyone recognizing the signs and symptoms of stroke regardless of age. Change is prompt and comprehensive medical treatment in every hospital across the country. Change is erasing the notion that stroke only affects the elderly. Please join me along with the American Heart and Stroke Associations in making a difference. Together we can decrease the number of people affected by heart disease and stroke. Together we can be the change.

Saturday, June 28, 2008

Calls for greater help for stroke victims

Stroke is the third most common cause of death among adults in Scotland. While nearly half the number of people affected will make a good recovery, the same number again can be left with considerable disabilities. Now a leading charity is calling on the Government to help stroke patients whose speech is badly affected.

Around 12,500 Scots will have a stroke this year. Whilst most victims will be over the age of 65, some 20% will be younger than that. It is one of the most common causes of adult death after heart disease and cancer, and can leave many survivors with severe disabilities. One of

Angela McLeod
Angela McLeod
the hardest to cope with is the loss of speech and communication. Now leading charities as well as The Royal College of Speech and Language Therapists in Scotland are joining forces to call for more support.

Angela Macleod of The Stroke Association said: "Having a communication disability affects the ability to speak and to understand language, and you can imagine that's got a huge impact on people's lives in terms of being reintegrated into their family and the wider community once they've had a stroke and they're going from the hospital back home. It can affect their ability to get back to work, relationships with friends, and again with family, and also can cause huge amounts of frustration and depression and distress. Which has been shown to happen with people who've got a communication disability".

According 'Lost Without Words', a report by the Stroke Association, a top priority should be an audit to establish just how many people in Scotland are affected. This will enable better patient referral to relevant support services. It's hoped that the current review of the Executive's Coronary Heart Disease and Stroke Strategy willl result in vastly imrpoved communication support services.

Stroke support was a 'life saver'

Most stroke patients struggling with communication problems receive little support, the Stroke Association says, despite groups available to help them.

One carer, Julia Hilder, explains how her husband was helped by the association after his stroke left him almost speechless.

John Hilder suffered a heart attack in December 2002, followed almost immediately by a stroke while he was in hospital.

"It took all his speech away and in the morning all he could say was 'yes' and 'no'," says Julia, 66.

Mr Hilder had aphasia - communication problems caused by damage to the brain - which is very common in stroke patients and can severely impact on quality of life.

Mr Hilder received some speech therapy in hospital, "but we were not told that he had aphasia and nobody would give us a prognosis".

"In hospital the speech and language therapist was great and gave us some leaflets, but when he was discharged there was no speech and language therapy."

They were, however, told about a communication support group in a neighbouring town.

The only drawback is that it takes an hour to get from their home in Bude, Cornwall to the group in Bideford, and she would prefer to have one closer.

Despite the travel time, Mr Hilder and his wife have been attending it once a week for the past five years.

John, now 65, has benefitted in various ways.

"It's a very, very sociable group," says Julia, "and the stimulation is wonderful for him, as well as being able to help others in the same situation as he is."

The group is focussed on conversation skills, with discussion exercises prompted by newspaper articles, and there are also outings to the theatre and lunches.

"It has made him more determined to progress," Mrs Hilder says.

"His communication was pretty minimal at first, but now it's pretty good. He does have blockages though - where the words are in there, but he just can't get them out."


Initially he was unable to categorise to words, such as knowing that blue was a colour and a dog was an animal, but he continues to improve.

"There's a lot of frustration, he used to be a big talker. You have to give him time to assimilate what you say and then the response is slower as his brain works through the words," Julia says.

She has also been helped, describing the group as "a life-saver".

"It gave me the only two and a half hours I had during the week to myself. I also go on all the trips with the group and have met the other carers there.

"This gives me the opportunity to meet with other people in the same situation as me and discuss our shared experiences."

Stroke patients 'need more help'

Many stroke patients with speech problems are being left isolated once they are discharged from hospital, campaigners say.

The NHS offers those with communication problems access to community support groups led by stroke specialists.

But the Stroke Association estimates 90% of patients in England who need such help are not getting it.

The government said extra money is being invested to improve services in the community.

About 150,000 people a year have a stroke, and about a third of survivors are left with a communication disability as a result.

Not all of the stroke sufferers will need long-term help, but for those who have lost the ability to speak or find it difficult to use and understand language, the NHS provides communication support therapy.

This is normally delivered in a group setting and led by a stroke specialist. The groups help patients improve their speech or develop basic sign language to allow them to communicate.

The Stroke Association, which runs most of the services for the NHS, found that just 1,300 people in England are accessing the care.

This figure represents just 12% of those who have severe communication difficulties.


The charity's report said the situation was a little better in Wales and Scotland, but improvements could still be made.

It said NHS trusts need to monitor the progress of stroke patients more carefully and ensure there were sufficient services to help them.

Joe Korner, of the Stroke Association, said: "We all need to communicate. Whether it's through speaking, a hand gesture or the blink of an eye, the ability to interact with others is crucial.

"The loss of these basic skills can leave stroke survivors feeling imprisoned and depressed."

The Department of Health said money was being invested in a range of counselling and support services.

A spokeswoman added: "We know that long-term support needs to be better coordinated."

May is about better hearing, speech

As May is Better Hearing and Speech Month nationally, now is a good time to refresh our memories of speech and hearing wellness. When we take good care of our overall health, we reduce the risk of damaging our abilities to speak and hear. Of course the standard health regime does apply.

Good nutrition promotes brain growth, may prevent subtle fetal brain abnormalities, heart disease and reduce the risk of some cancers. These health problems can have a damaging effect on our abilities to use speech and language. Heart and circulatory problems can also affect hearing.

Regular professional health care promotes constant monitoring of health status. It may prevent illness, disability, high blood pressure, which all affect hearing. Routine health care also may prevent voice disorders and aphasia (the loss of ability to use and understand language). Exercises and stress management increases physical and emotional well-being, which reduces the dangers of stroke and the resulting possibility of aphasia. Remember to buckle up for safety when driving any vehicle. Head injuries cause memory deficits and difficulties with thought processing and language understanding as well as language expression.

Alcohol affects the brain and common “street” drugs are even more toxic. The language and learning areas sensitive to and easily damaged by substance abuse include memory, problem-solving, deriving meaning, decision-making, and anticipation of consequences. Substance abuse can even dry the mucous membranes of the vocal tract. For those of us who enjoy cigarettes and smokeless tobacco, we must remember that neonatal problems, laryngeal and oral cancers, respiratory distress, developmental disabilities and even strokes are possible.

Let’s be reasonable about protecting ourselves.

Avoid extended periods of exposure to loud noise.

Wear ear plugs or ear protectors when around loud noises, contrary to popular belief, cotton in our ears does not work.

Keep the volume down in our cars and on our personal music systems.

Do not try to clean our ears with cotton swabs or such “foreign” objects as bobby pins and pencil tips.

Have our hearing checked periodically. If we have trouble understanding what is said to us, have constant ringing in one or both ears, are not startled by noises that startle others, or frequently need to ask others to repeat what they said, we need a hearing test.

Do not misuse the voice by shouting or using a pitch level that is too high or too low for comfort.

Parents: Take time to listen, talk and read to our children, beginning at birth.

Accept some speech mistakes as the child learns. Do not ask the child to slow down and repeat, this brings attention to the mistake and may cause anxiety in the child — which causes more speech problems.....

Recognizing symptoms of stroke saved doctor’s life

Susanne Nadeau, Herald Staff Writer
Published Tuesday, May 06, 2008

Knowing the signs and acting fast saved Tom Cariveau’s life. Physically fit with a good blood pressure reading, low cholesterol levels and no family history, Tom, a doctor at East Grand Forks MeritCare, wasn’t considered high risk for a stroke. But he recognized the symptoms when he suffered a major one Nov. 8. A stroke is a blood clot plugging an artery or a blood vessel that breaks in the brain, disrupting the flow of blood. When blood flow to the brain stops, brain cells die and the abilities controlled by that area of the brain are lost, which is why some stroke survivors lose the ability to speak or use certain body parts. A stroke can be small, causing only minor damage; major, immediately affecting the ability to use certain parts of the body; or massive, resulting in death. Tom, in family medicine for the past 21 years, was in his ...

Isolation of the speech area*


The case is presented of a 22 year-old woman who survived ten years following an episode of carbon-monoxide poisoning. The patient's language behavior presented several striking clinical features. Her spontaneous speech was confined to a few stereotyped phrases and she gave no evidence of comprehension of language. By contrast she exhibited echolalic repetition with excellent articulation. In many instances she showed the “completion” phenomenon described by Stengel, i.e. the completion of stereotyped or simple phrases uttered by the examiner. In addition she was able to carry on verbal learning as shown by her ability to learn the words (as well as music) of songs which had not existed before her illness.

At post-mortem, a detailed study of serial whole-brain sections showed intactness of auditory pathways up to and including Heschl's gyrus, of Wernicke's area and Broca's area and of the arcuate fasciculus connecting these two cortical regions, of the lower Rolandic cortex and of corresponding portions of the pyramidal tract. The hippocampal region (except for Sommer's sector) and the structures of the limbic system were well preserved, as was the reticular substance of the brain stem.

This case corresponds in its clinical picture to the classical “mixed transcortical aphasia” (i.e. paucity of speech and severe comprehension deficits with excellent preservation of repetition) with some new features (capacity for verbal learning) not previously described. The pathology agrees with that advanced by Goldstein for this condition, i.e. “isolation of the speech area”. The explanation advanced for this clinical picture is that comprehension and propositional speech are lost because of the isolation of the speech region from other cortical areas, while those functions which can be carried on by the speech area itself, i.e. repetition and completion of well-learned phrases, are preserved. The ability to carry on verbal learning in this patient probably depended on the intactness of the medial temporal regions and the preservation of the connections to them from Wernicke's area.

In Praise of Literary Heroism

The Shadow Factory by Paul West.

“Can you think without words?” Paul West, a playful, prolific, and erudite master writer, was forced to contemplate this paradox in the wake of a massive stroke. The author of many remarkable and diverse novels, including The Immensity of the Here and Now, Cheops, and Terrestrials, and a string of vivid memoirs, West was already hospitalized for a drastic kidney infection when he was struck down and hurled into the void of global aphasia. His right arm was paralyzed. He could barely swallow. He could not speak. After months of heroic effort, he uttered his first complete sentence, “I speak good coffee.” His doctors were adamant: he would never write again. But over the years, West has overcome adversity in many forms. Persistent, ardent, witty, life-loving, deeply curious, and aided and abetted by his indefatigable, brilliant, and loving wife, the writer Diane Ackerman, he proved the good doctors wrong, regaining his great facility with language, and writing this astonishing work, the first aphasic memoir. A dispatch from the “shadow factory” of an abruptly silenced inner realm in which a radiant mind struggles to burn through dark matter.

West was determined “to be as sentient an observer as possible” even in this frightening, wordless state, and so he was. And in this philosophical, positive, and dream-like chronicle, a work that booms like Shakespeare and clicks like Beckett, West describes the lightning strike that changed everything, the voices he heard, and the slight alterations in sensation that gave him hope. As he ponders the nature of muteness, the solace of reason, and the maddening gap between thought and speech, he does not dwell on the fear, anger, and “silent frustration” engendered by his ordeal, but instead discerns an eerie beauty in his journey from the dim “languageless wasteland” into the full sun of life and the music of words, glorious words. “We live, most of us, in a world of dumb recalcitrance, saved occasionally by inspired seers.” West is just such a being. We all benefit from his valor and artistry. Watch for his next novel.
9:48 PM

Saturday, May 10, 2008

How it feels to have a stroke

Sunday, April 27, 2008

At 60, He Learned to Sing So He Could Learn to Talk

Published: April 22, 2008

Few people over the age of 10 would list “Happy Birthday” among their favorite songs. But Harvey Alter, now 62, has a special fondness for it. It helped teach him how to talk.

Damon Winter/The New York Times

Harvey Alter had difficulty speaking after his stroke. Melodic intonation therapy seems to have helped him retrain his brain.

Harvey Alter had difficulty speaking after his stroke. Melodic intonation therapy seems to have helped him retrain his brain.
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One morning in June 2003, Mr. Alter, then a self-employed criminologist, was putting a leash on his dog, Sam, in preparation for a walk around Greenwich Village, where he has lived for 30 years. Suddenly he felt dizzy and disoriented.

“My thoughts were intertwined, not making sense,” he said in a recent interview. “I knew I was having a stroke.”

At St. Vincent’s Hospital, doctors diagnosed an ischemic stroke, caused by a blockage in blood flow to part of the left half of his brain. As a result, the right side of his body was temporarily paralyzed, the right side of his face drooped, and he had trouble coming up with the right words and stringing them into sentences — a condition called aphasia.

Within hours of his stroke, Mr. Alter met with Loni Burke, a speech therapist who now works at Lenox Hill Hospital. At first he was completely nonverbal; within a few days he could say small words.

“Mostly, he said, ‘No,’ ” Ms. Burke recalled, “because he was frustrated that he couldn’t speak.”

After three weeks in the hospital and two years of painstaking therapy, Mr. Alter’s paralysis had mostly disappeared and his smile was back to normal. But while he could communicate through small words and the help of a chalkboard, complex verbal communication remained elusive.

Using standard speech therapy techniques like reviewing lists of numbers and the days of the week, Ms. Burke helped her patient piece together short phrases. But they came slowly and sounded robotic.

Then one day, she asked him to sing.

“How can I ever sing? I can’t talk,” Mr. Alter recalled thinking. But as soon as Ms. Burke began to sing “Happy Birthday,” he chimed in.

“It sounded good,” he said. “Almost like I didn’t have anything wrong.”

The technique, called melodic intonation therapy, was developed in 1973 by Dr. Martin Albert and colleagues at the Boston Veterans Affairs Hospital. The aim was to help patients with damage to Broca’s area — the speaking center of the brain, located in its left hemisphere.

These patients still had relatively healthy right hemispheres. And while the left hemisphere is largely responsible for speaking, the right hemisphere is used in understanding language, as well as processing melodies and rhythms.

“You ask yourself, ‘What specifically engages the right hemisphere?’ ” said Dr. Gottfried Schlaug, a neurologist at Beth Israel Deaconess Medical Center in Boston, who studies music’s effect on the brain.

Melodic intonation therapy seems to engage the right hemisphere by asking patients to tap out rhythms and repeat simple melodies. Therapists first work with patients to create sing-song sentences that can be set to familiar tunes, then work on removing the melody to leave behind a more normal speaking pattern.

But relatively little research has been done to understand how this type of therapy affects the brain of a stroke patient.

In a study completed in 2006, Dr. Schlaug and colleagues at Harvard tracked the progress of eight patients with Broca’s aphasia as they underwent 75 sessions of melodic intonation therapy. M.R.I. scans taken when the patients were speaking simple words and phrases showed that activity in the right hemisphere had changed significantly over the course of treatment.

“The combination of melodic intonation and hand-tapping activates a system of the right side of the brain that is always there, but is not typically used for speech,” Dr. Schlaug said.

He recommends melodic intonation therapy for patients who have no meaningful form of speech, but can understand language and have the patience for therapy sessions.

Before music came back into his life, Mr. Alter had difficulty thinking of the words he wanted to use and forming them. For him, it seems, melodic intonation therapy was the key to retraining his brain to speak with tone and rhythm.

“After a stroke, the brain is learning to adapt,” said Dr. Albert Favate, stroke director at St. Vincent’s Hospital in New York. “For someone with Broca’s aphasia, melodic intonation therapy can allow them to get back their speaking patterns, which may improve speech spontaneity.”

Mr. Alter still speaks somewhat haltingly, with a noticeable lilt, but he no longer struggles so mightily to find the right word, and he will happily serenade anyone with conversation about his condition. While he attributes most of his success to melodic intonation therapy, Ms. Burke says it was only one tool she used among a host of others.

Still, she agrees that the therapy was crucial. “It may have caused an initial reaction of, ‘Wow, maybe I can speak,’ ” she said.

As he has recovered, Mr. Alter has devoted his life to increasing awareness about aphasia. He created the International Aphasia Movement two years ago and spends much of his time leading support groups for stroke survivors and their families and touring the world to speak for those who can’t speak for themselves.

And he is always happy to sing “Happy Birthday” with anyone who cares to join in. “But I don’t mind Christmastime either,” he said. “Because I know all of the carols.”

Wednesday, April 23, 2008

Harvey Alter : New York Time (4/22/08)

Sunday, March 16, 2008

The secret stroke that nearly killed me, by Samantha Morton

Samantha Morton told yesterday how a stroke left her fighting for her life.

The 30-year-old actress and mother of two said she spent more than a year relearning how to walk and carry out basic tasks.

She said she had kept the condition secret because she did not want it to affect her acting career.

Miss Morton, who has twice been nominated for an Oscar, said: "I was near to death. I had a stroke at the beginning of 2006."next....

(Video)UMAP: Program Helps Patients with Aphasia Regain Speech

A 40-year-old man suffers a stroke and suddenly only has the speaking ability of a toddler. The disorder is called aphasia, but patients are discovering there is a way to find the words again. FOX 2's Deena Centofanti has more on the University of Michigan Aphasia Program.

Brighton woman sets out on marathon bike ride to honor sister

Photo by Kevin Denke

Mary Kay Engel of Brighton will embark on a 3,000-mile bike ride next month in support of the Rocky Mountain Stroke Association. Engel has been cycling for about four years.

It is 8:30 Saturday morning.

Mark Kay Engel is fidgeting with a battery operated bicycle reflector in the kitchen of her Brighton home.

Her Carbon Fiber Ruby Pro bike sits patiently in the hallway. The tools of this demanding hobby lay behind her: gloves, helmet, sunglasses, an iPod.

Saturday, March 15, 2008

Struggle for Words Frustrates Woodruff

By Christine Dugas,
USA Today
Posted: 2008-02-25 15:56:25
Filed Under: Health News
(Feb. 25) -- One year after Bob Woodruff spoke about his brain concussion on an ABC documentary, he is busy flying around the world on assignments and continuing to draw attention to the signature injury of the war in Iraq: traumatic brain injury.

A Continuing Recovery
From Traumatic Injury
1 of 10

Two years after he suffered a serious brain injury while reporting in Iraq, former ABC News anchor Bob Woodruff is part of a team that produces in-depth reports for the network. He has made an amazing recovery from the injury, but he suffers from aphasia, a disorder that makes it difficult for him to come up with words. Above, Woodruff reports from Cuba in April.
His recovery seems miraculous, considering how the shrapnel from a roadside bomb had ripped into his skull on Jan. 29, 2006. Woodruff, 46, is back at work at ABC news, although he does not have his previous job as a news anchor — at least not yet.

"I don't know if I could do that," he says. "I think it's possible. But one thing that I know for sure is that I'm going to remain as a journalist because I have always loved journalism."

Woodruff now works with a team to produce more in-depth assignments. He can better cope with longer projects because his traumatic brain injury (TBI) caused a language disorder that makes it hard for him to come up with words. And for a journalist, nothing could be more frustrating.............

Sunday, March 9, 2008

Joseph-Maurice Ravel

Illness and death

In 1932 Ravel sustained a blow to the head in a taxi accident. The injury was considered minor, but soon thereafter he began to complain of aphasia-like symptoms similar to Pick's disease. He had begun work on music for a film version of Don Quixote (1933) featuring the Russian bass Feodor Chaliapin and directed by G. W. Pabst. When Ravel became unable to compose, he could not write down the musical ideas he heard in his mind, Pabst hired Jacques Ibert.

In late 1937 Ravel consented to experimental brain surgery. One hemisphere of his brain was re-inflated with serous fluid. He awoke from the surgery, called for his brother Edouard, lapsed into a coma and died shortly after. He is buried in Levallois-Perret, a suburb of northwest Paris.

Sunday, February 24, 2008


The great Michelangelo Antonioni, director of such films as L'Avventura, Red Desert, Blow-Up and The Passenger, died in Italy yesterday. He was 94.

The New York Times in its obituary quotes Jack Nicholson's remarks on the director when he presented him with a career Oscar:

'In the empty, silent spaces of the world, he has found metaphors that illuminate the silent places our hearts, and found in them, too, a strange and terrible beauty: austere, elegant, enigmatic, haunting."

Although crippled by a stroke and rendered aphasic, Antonioni, who began his career as a reporter, continued to make films throughout his years, sometimes with the help of supporters like Wim Wenders. (Wenders' book My Time with Antonioni is a curious, at times quite sad, but ultimately illuminating portrait of the filmmaking process.) If, by any chance, you are unfamiliar with his work, please take some time to discover them, starting with the titles I listed above

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