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May 14, 2004

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Publication Date: Friday, May 14, 2004

Calm after the storm Calm after the storm (May 14, 2004)

Local group helps stroke patients recover

By Diana Reynolds Roome

In the middle of a karate session, Bruce Irvine had a stroke. Suddenly he was on the floor unable to speak, his vision fading and his right side paralyzed.

"I thought I'd really done something to myself this time," said Irvine, 54, a third-degree black belt who also regularly works out with weights, cardio exercise and swimming. Someone called 911, and he was taken from the karate studio in Palo Alto to Stanford Hospital.

Everything moved fast -- and that was critical. Stanford happens to be one of the first hospitals in the U.S. with a dedicated stroke center, where experienced neurologists use tPA, a drug that can reverse the effects of stroke if it is administered within three hours of the onset of symptoms.

Irvine's symptoms were classic -- loss of movement on one side, blurred vision and inability to speak. Even he dimly suspected it might be a stroke, though he had no idea that a common karate maneuver, the neck hold, had dissected the inner lining of his carotid artery and caused the blood to back up and clot, blocking the flow of oxygen to his brain.

Within two and a half hours of the trauma, Irvine was receiving tPA. The movement in his right leg quickly returned, and his vision cleared. His speech took a little longer but he returned to work after only 10 weeks and to his karate practice after six. Today, over a year later, he still has trouble writing and fine-tuning movements of his right hand. But, all in all, he said, "something went right after something went terribly wrong."

For the past five years, a local grassroots organization has been striving to defy statistics and make things "go right," even though stroke is the leading cause of disability and the third leading cause of death and can affect anyone, regardless of age, sex, ethnic group, or level of fitness.

Despite this daunting challenge, the Peninsula Stroke Association was founded by a group of physicians, philanthropists and others in the health care field to try and reduce the often devastating effects of stroke by giving people clear information about the warning signs and speeding up the response.

"The most hopeful thing about stroke is that it is the most preventable of all catastrophic diseases," said Rezvan Moghaddam, executive director of the Palo Alto-based PSA, a nonprofit working with a small staff and budget, and a cadre of volunteers.

"Stroke happens to somebody every 53 seconds, but the more we can increase awareness, the more chance there is that people with stroke symptoms will get to emergency in time to reverse the results."

For this reason, PSA's main message is always the same: "Stroke is a medical emergency. If you or someone with you is experiencing two or more of the warning signs, call 911 and go to a hospital emergency room without delay."

"Everyone needs to know the warning signs of stroke, just as they know the symptoms of heart attack," said Anne Jacobs, assistant lecturer in neurophysiology at UCSF, and PSA's director from its beginnings in 1999 until 2003. "Unlike other diseases, stroke happens suddenly -- the person is different overnight."

Stroke, sometimes known as "brain attack," happens when a bleed, or most often a clot, blocks the flow of blood to the brain, thus depriving it of oxygen and causing brain cells to die. This is why fast treatment is so urgent.

"Time is brain," says David Tong, an associate professor of neurology and stroke expert at the Stanford Stroke Center, who reminded people at a recent Stanford community stroke conference that there should be no delay in seeking medical attention if you have symptoms of a stroke, particularly if you have limb weakness. "Don't say, 'This is nothing -- I'll go to bed, it'll be better tomorrow,' because in the morning you could be totally paralyzed."

Even if the symptoms do resolve, he said, they could be an indication of a mini-stroke (transient ischemic attack or TIA), which is often an indicator of a bigger stroke to come.

Last year, PSA (which also stands for prevention, support and advocacy) encouraged more than 5,000 people to attend community-based lectures and discussion groups, some now in Spanish as well as in English. These people walked away with life-saving information including how to reduce their own stroke risk and that of family members, friends and colleagues.

Over the past years, PSA's message has become increasingly relevant as Peninsula hospitals have improved their response to stroke, a malady that was once all but ignored by the medical community because there was thought to be no cure. Partly due to the advocacy of the PSA, many Peninsula hospitals, including El Camino Hospital, now have a dedicated stroke team, with a CT scan in the emergency room and a neurologist on duty 24 hours a day.

PSA has also educated paramedics about being alert to stroke symptoms and calling ahead to the hospital to be prepared to act fast.

"We're fortunate in this area, as our medical institutions have a very sophisticated approach," said Dr. Hewlett Lee, a founding member of PSA. "But there are still misconceptions about stroke -- people who don't understand the need for urgency in diagnosis, so there's still a lot of delay in getting [stroke patients] treated."

According to Tong, who also serves on PSA's board, even hospitals such as Stanford do not administer tPA to more than 10 to 15 percent of patients coming in with suspected stroke (though this compares favorably to 1.2 percent nationally).

"The number-one reason why patients don't get treated with tPA is that they don't come in within the 3-hour window necessary," said Tong. He is nevertheless optimistic about new treatments in the pipeline, which can be used well after this narrow window of opportunity has closed. Neurotransplantation and neurostimulation are two that he will speak about at the Victory Over Stroke breakfast on May 25 in Palo Alto.

But these treatments are still some years away, and stroke affects large numbers of people who need help now. Four million people nationwide live with the aftermath of stroke, which varies from paralysis, to difficulty speaking, sight impairment, organizational impairment and personality changes.

For upwards of 600 survivors and their families in Santa Clara and San Mateo counties, PSA provides information, advocacy and a hospital program in which people who are recovering from stroke go to visit those who have recently experienced one.

"Once you've had a stroke, the hospital and medical community do a very good job in stabilizing and patching you up. Then rehab services ... get you on your way until you reach a degree of functionality (usually determined by your insurance). If you want to go further, you have to search far and wide to get resources," said Irving. "You have to be very patient but persistent."

A lot of people are limited in their search, especially if physical or cognitive impairments have made it hard to use the Internet. At PSA meetings, people learn about ongoing research and available resources.

Nine support groups play a vital role in helping people who have had a stroke adjust, progress and find new confidence despite the often serious blow to their lives. Among these are the Women's Club, Young Women Survivors, Men's Club and most recently, an After Hours group spearheaded by Irvine after he returned to his job in banking. Through them, people strike up a comradeship, which helps to reduce the all-too-common isolation that happens after stroke, and provides an opportunity to share experiences and progress.

"Communication between stroke survivors is a unique phenomenon," said Irving, whose wife looked for sources of support both for Bruce and herself. "As much as others can empathize, it's different when you've had a stroke yourself. Every stroke is different, but other survivors can hear the hiccups of the brain."

"My whole life came to a standstill," said Dorene Campanile, a PSA volunteer, who understands those hiccups. "Everyone thought I was going to pick up my life where I left off, but it wasn't going to happen. I had to learn over again how to walk, speak, take a shower, and cut meat.

"It was very difficult, for me and also for my family. People need to be aware, not only of the effects but also the after-effects, which are a big part of the whole picture."

PSA didn't exist at the time of Campanile's stroke 10 years ago, but she is glad that now it is helping people to learn and cope -- with all the effects of stroke, both before and after.

Information

David Tong, MD, with neurologists Ronald Hess and Harmeet Sachdev, will be speaking about stroke, its treatment and aftermath, at PSA's Victory Over Stroke breakfast at Garden Court Hotel, 520 Cowper Street, Palo Alto on May 25, 7:30-9:30 a.m. For more information, visit: www.psastroke.org/victory or call 565-8485.




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