Visually Unimpaired

This essay was copied from the web site of the Rehabilitation Institute of Chicago with their permission and with the author's, Cari Biamonte, permission. Cari participated in a study done by the Rehabilitation Research and Training Center on enhancing the quality of life of stroke survivors.

This study was done to assess how writing in different ways about the experience of recovery can help physical and psychological health and activity after stroke.
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By Cari Biamonte
© May, 2006

To look at me is to think I am the picture of good health. I am a 45-year-old Caucasian woman, five feet three inches tall, 103 pounds with an athletic build. I don’t drink, smoke, or do recreational drugs. I go to church regularly, work out at the gym, and floss my teeth before bedtime. I thought I was in control of my ever-challenging health issues. You see, I have a long history of health issues, none of which include heart disease, high cholesterol, diabetes, or obesity. Most people assume I am a runner. Indeed I am, or was, and will be again. I have no outward physical defects that say, “Look at me I’m a stroke victim,” but I am, or was, and NEVER want to be again.

Other diseases tested my character: childhood nephritis, ulcerative colitis, steroid induced osteoporosis, vertebral compression fractures, and chronic fatigue. Stroke was a word I was unprepared to hear. I have no family history of it, nor do I fit the profile for such a condition.

Apparently the onset of my stroke was blurred vision. Who knew? My eyesight went from focused to double to unconscious to enlightened. I guess you could say, “I was blind and now I see.” 

This is my story.

My eyes were closed and my body frozen in fear to the bed. I remember the doctor at the foot of my hospital bed talking into his voice recorder about my condition. He described me as one would an unremarkable specimen. I distinctly remember him saying that they wouldn’t know anything for three days. Three days? I opened my eyes and saw my mother. “GOD!” My insides screamed. “Not again. Holy Mother of God!” I thought. “My mother has seen me fall countless times before. Surely you must know the fear and pain she is feeling, for you too have watched your Son fall, suffer, and die. I just can’t put her through this anymore. I can’t stand to see her frightened. I want to live and take care of my parents, not have them continue to babysit me into adulthood.” That’s when it happened. That’s when things changed for me. There was this sudden awareness that all is well. And indeed it was.

My recovery was complete. Short of a three-week headache, neck and shoulder pain, fear of being alone and uncontrollable emotions, I was on my way to a new and exciting life!

What I didn’t know was how this sudden “relationship” with God would change my life and existing relationships. Suddenly I was struck with a conviction of all I did that wasn’t so “good.” My religion just flew out the window and my relationship with God was a sharp reality. The fact is my relationship was lost behind the trappings of religion. I didn’t have a relationship with God. In order to have a relationship, you need to spend time with someone. If I only spent one hour a week with my spouse, we would have a less then happy marriage, and so it goes with our Creator. I had a lot of work to do and a lot of forgiveness to seek.

For what purpose had I received such grace? I was feeling a tremendous amount of gratitude and responsibility to fulfill God’s will in my life. My sole focus quickly became just that. After all, I was spared from any visible impairment or death—it’s the least I could do. I felt oddly encouraged about the future, yet misunderstood by my fiancé. A faithless man, a scarred and bitter man, an alcoholic who was wounded by the Vietnam War. Visually unimpaired like me, yet damaged goods still the same. What a team we make. Oil and water.

It took a great deal of soul searching and much needed prayer before I felt at peace with my decision to marry this man and thus, began exploring the new me, as did my loved ones. I could see both wonder and confusion in the faces of those who have known me. In less than two years, I had lost my job that I held for 13 years, suffered a stroke, got married, and moved 140 miles from my home. Perhaps it was unfair of me to expect anyone to understand what it was I had been feeling. How do you explain a spiritual rebirth? A sudden wisdom into other’s circumstances, a deep familiar empathy with strangers, an unconditional love for those who’ve wronged you, and an “ooohhhhh I get it now” when reading the word of God. Finding that every waking moment is spent in constant prayer. Wanting nothing but solitude. Having nothing in common with the things of this earth any longer. Who can blame my husband for feeling left out and confused?

What my husband does have is a wonderful gift for providing for and protecting me. It was as if God placed him right there to physically catch me when I stroked. That’s when the Lord began his work in me. This new and different life of mine has given me the opportunity to seek the presence of God, discover who I am, and to focus on using my talents for the sake of others. Interesting stuff. Scary stuff too.

So I suffered a stroke. Others have suffered more, some less, each one differently. No one goes through this life unscathed. What matters most is not what we learn in the midst of our suffering, but that we persevere through the suffering learning to trust and believe in the greater good that is to be revealed. This is a very abstract concept for those with no faith, for faith itself is believing in what is not seen.

I come away from this experience with this advice. When faced with unbearable pain and burdens, get up in the morning, get dressed and get out of the house. If physically possible, walk to a coffee shop or restaurant where you could meet people, read and reflect. Spend time acknowledging your circumstances, accept what cannot be immediately changed, develop a strategy for recovery, and most importantly remain hopeful in things yet to come. Do not fear.

All material is the property of the Rehabilitation Institute of Chicago All rights reserved

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Awardee has seen stroke treatment transform

By AMERICAN HEART ASSOCIATION NEWS
http://news.heart.org

Jeffrey Saver, M.D., accepts the Meritorious Achievement award at the American Heart Association’s awards ceremony in June. (Photo by Tim Sharp)

The patient, young and pregnant, arrived at the hospital with a severe stroke. She couldn’t speak, comprehend or move the right side of her body.

When Jeffrey Saver, M.D., started his career decades earlier, there would have been little he could do to help the woman. But now it was 2006, and a lot had changed. The patient was treated with one of the first clot retriever devices designed to open a blocked artery in the brain, Saver said. She went on to function normally and gave birth to a healthy baby boy.

“An outcome that before was unachievable is now completely achievable,” said Saver, who has seen the world of stroke transform since he became a director of UCLA’s Stroke Center in 1995. “When I started, there was no proven treatment for stroke. I have been privileged to have my career occur in the first effective therapeutic era for stroke.”

Saver was recently honored in Dallas with a Gold Heart Award, the American Heart Association’s highest volunteer honor. Widely published, Saver’s contributions to stroke care, including systems of care and performance metrics, are immense. He has been the global or site principal investigator for more than 50 clinical trials. One of the most ambitious and groundbreaking was FAST-MAG, a first-of-its-kind study showing that paramedics can safely give intravenous medication to stroke patients in the ambulance.

It’s not surprising that Saver wound up in a medical career. Both his father and paternal grandfather were general practitioners. At age 3 Saver would go on house calls around Boston in his grandfather’s “1950s doctor’s car.”

Still, it was a challenging heritage, Saver said, because his love of math and science, a natural fit for medicine, competed mightily with his philosophical and linguistic interests. After some soul searching, Saver eventually found his home in neurology, where he has carved out a reputation for his tenacity and innovation in investigating stroke.

Saver said he was drawn to the intensity and emotional rewards of acute care and making a difference. The challenges were huge, and still are.

While stroke was the No. 3 killer in the United States when Saver finished his stroke fellowship in 1992, it has since moved to No. 5 thanks to increased awareness and treatment advances in recent decades.

“Clot-busting tPA — the ‘Drano drug’ — and clot retrievers are two therapies to open blocked arteries that have occurred over last 25 years,” he said.

“Once we proved that tPA worked, it was the effort of a generation to translate it into practice,” Saver said. “Emergency physicians were understandably reluctant, because it had risks and they didn’t have [all the knowledge] to make decisions on their own. And neurologists weren’t used to coming to the ER in the middle of the night and making those decisions.”

It was a 20-year effort of the AHA and the American Stroke Association to create a set of tools and policies that transformed the practice of stroke medicine in the United States, Saver said.

“Even more important was the notion of having designated stroke center hospitals and specialized stroke neurologists, with everyone working together to provide organized care,” he said. “Before it was Russian roulette whether or not a stroke patient got the best treatment, because an ambulance would deliver the patient to the nearest hospital instead of the one best equipped to treat the patient.”

Because of these and other efforts nationwide, the treatment rate for stroke patients with brain-saving clot-dissolving therapy tripled between 2004 to 2010. But the victories are mixed. One in six people will have a stroke in their lifetimes, and it’s the No. 2 cause of death worldwide, and a leading cause of serious disability.

With nearly 800,000 each year in the United States, “stroke is unfortunately still very common,” Saver said. “Although the per capita rate of stroke has been cut in half since 1990, the number of strokes is still increasing, taking into account people’s age — two-thirds of people who have a stroke are 65 or older.” Generally, stroke developments lag behind heart innovations, he said.

“It takes 10 years longer to develop something comparable for the brain. First, the brain and the brain vessels are more complex; we have a much more narrow margin of error,” Saver said.

“Second, there are somewhat fewer strokes versus heart attacks in the U.S. so it takes longer for us to recruit people into randomized trials and get definitive evidence of what works or doesn’t work.”

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Look Beyond U.S. Borders

The following is from a July 2017 American Heart Association report.

http://news.heart.org
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Traveling to hospitals in the United States is difficult for Yomi Ogun, M.D., a stroke researcher from Nigeria.

A clot-busting medicine to treat stroke is always in stock. In his native country, it’s a rare commodity. Ambulances in America can get patients to hospitals quickly, an underappreciated result of good roads. In Nigeria, Ogun said, stroke victims often die before reaching the hospital.

But although the care of stroke patients clearly differs, Ogun has noticed similarities in how stroke risk affects African-Americans and sub-Saharan Africans from countries such as Nigeria, Ghana and Cameroon.

More than two-thirds of African-Americans can trace their ancestry to those countries and others in the region. It will take collaboration between researchers in Africa and the United States to better understand how stroke and its risk factors affect their populations, Ogun said.

“You compare, you contrast, see areas of similarities, areas of differences — and then see how [to] improve,” said Ogun, a professor of neurology and internal medicine at the College of Medicine at Lagos State University.

The same could be said of studying stroke in Latin Americans and the nearly 57 million U.S. Hispanics.

Mexican neurologist Antonio Arauz, M.D., Ph.D., said considering that most strokes are preventable, U.S. and Latin American researchers must team up to figure out how behaviors, social dynamics and living conditions play a role in risk factors such as high blood pressure, diabetes and high cholesterol. Such insights could lead to more effective prevention strategies to reduce stroke rates.

“A Mexican in the United States… doesn’t have the same eating habits as he does in Mexico City or his place of origin,” said Arauz, a doctor and researcher at the National Institute of Neurology and Neurosurgery Manuel Velasco Suárez in the Mexican capital.

But although lifestyles may differ dramatically, what groups still have in common is genetics. A shared ancestry for populations living different lives in different countries may offer the most valuable clues to preventing strokes — both the United States and abroad.

Such investigations could help determine, for example, whether black Americans are genetically predisposed to strokes, said vascular neurologist Bruce Ovbiagele, M.D., chair of neurology at the Medical University of South Carolina.

“Even after we account for higher rates of diabetes or hypertension, even after we account for lower socioeconomic status for African-Americans, there’s still about a 30 percent higher risk of stroke [compared to U.S. whites that] we still can’t explain,” Ovbiagele said.

Studies could also help researchers understand how acculturation affects the health of immigrants compared to that of their U.S.-born children and grandchildren, said Jose G. Romano, M.D., a professor and stroke division chief in the department of neurology at the University of Miami Miller School of Medicine.

Stroke is the nation’s No. 5 killer and is a leading cause of disability. Worldwide, stroke is the second-leading cause of death. Estimates from the World Health Organization show the burden of death and disability from stroke is seven times higher in low- and middle-income countries, such as Nigeria and Mexico, than in high-income countries, such as the United States and Germany.

In the United States, stroke prevalence is higher among African-Americans than among whites and Hispanics. Yet both African-Americans and Hispanic-Americans face a greater burden of risk factors for stroke: They are more likely to have diabetes, obesity and uncontrolled high blood pressure compared to whites.

According to the Centers for Disease Control and Prevention, stroke is a top killer among Hispanic-Americans and African-Americans, ranking at No. 4 and No. 3, respectively. By comparison, stroke is the No. 5 cause of death for Americans overall.

Plus, statistics from the American Heart Association show African-Americans — the country’s second-largest racial group — are nearly twice as likely to have a first stroke and are about 30 percent to 60 percent more likely to die from a stroke compared to white Americans. Yet Hispanic-Americans are less likely than both black and white Americans to die from a stroke.

But seeing how U.S. data aligns with the experience of sub-Saharan Africans and Latin Americans presents a challenge, experts say, because reliable statistics are hard to come by.

For years, Ovbiagele said, researchers in Nigeria used data from a 1970s-era population study to estimate present-day stroke statistics. In Latin America, researchers long relied on statistics of U.S. Hispanics to calculate figures in their own countries, Arauz said.

Better, more current local data is now available, both experts said, but it is mostly from patient hospital records and doesn’t accurately reflect a country’s overall population.

Ovbiagele and his colleagues recently analyzed strokes in nearly 2,000 native Africans, African-Americans and European-Americans. The findings, published last month in Stroke, suggest race plays a role in the predisposition of certain risk factors for stroke, and possibly even the type of stroke.

Diabetes was more common among native African and African-American stroke patients compared to European-American patients. And nearly all — 93 percent — of native Africans had high blood pressure, as did 83 percent of African-Americans. Among European-American patients, 64 percent had high blood pressure.

The study also showed that hemorrhagic stroke — a type of stroke that causes bleeding in the brain and is strongly linked to high blood pressure — was much more common among native Africans than African-Americans.

“The nature of how you prevent strokes, the emphasis of that, should probably be a little bit different [for native Africans versus African-Americans versus European-Americans],” Ovbiagele said.

Even among U.S. Hispanic ethnic groups, a one-size-fits-all approach to preventing strokes may not be the best approach given that stroke and some of its risk factors appear to impact groups differently. For example, a 2016 CDC report found Puerto Ricans were more likely to report multiple chronic conditions such as stroke, high blood pressure or diabetes compared to people of Mexican, Cuban and Central American descent. Other research has reported that diabetes is more common among Mexican-Americans and Puerto Ricans — the two largest U.S. Hispanic ethnic groups — compared to Hispanics of Cuban and South American heritage.

“Although there are genetic factors involved in disparities, we believe the predominant factor in disparities is access to and use of health care, in large part mediated by socioeconomic factors,” said Romano, a co-investigator of the Florida-Puerto Rico Collaboration to Reduce Stroke Disparities project.

In Latin America, researchers have observed that high blood pressure is more common among Venezuelans, Chileans and Argentinians, and diabetes is more common among people from Mexico, Ecuador, Colombia and Chile.

Partnerships have already developed between U.S. researchers and international colleagues. Ovbiagele said the Medical University of South Carolina has ongoing projects in Nigeria and Ghana. Arauz and Romano recently worked together on a study comparing risk factors in stroke patients in Mexico City and Miami. But the researchers said collaborations between U.S. and Latin American scientists tend to be between scientists and not institutions.

The biggest hurdle researchers now face is money. Funding for international projects is hard to come by, said Ovbiagele.

But that hasn’t deterred Ogun, who feels a sense of urgency. His mother and a brother died from stroke, and another brother recently had one. Researchers worldwide have an obligation to share experiences, he said.

“If we don’t document all that we’re seeing now, how will those that come after us? What will they fall back on?” Ogun said. “We need to do research across the board. It cannot be unilateral.”

Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.

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Simulation Event Tracks Time it Takes for Stroke Treatment

Included here is a link to help you survivors and caregivers find the stroke group in your area. Eventually it will be a permanent link with the ones on the left of your screen. All you need to do is enter your zip code and the search radius in miles and it will tell you if there is one and where. Just click on this following link to get started: Find a Stroke Group in Your Area.


By AMERICAN HEART ASSOCIATION NEWS
http://news.heart.org

When the stroke code is called into his station, Fire Chief Quinten Randolph will be watching to make sure his crew gets their part just right. Randolph knows firsthand the importance of a stroke-ready system – it saved his own life two years ago.

While sure to bring back a lot of memories for Randolph, 56, the code is part of a simulation event on Thursday with the American Heart Association/American Stroke Association to increase public knowledge around stroke treatment. Similar events are taking place across the country in May for American Stroke Month.

The St. Louis drill begins with a 911 call from a public location where spectators track the time from the onset of stroke symptoms to the moment the patient arrives at the hospital. There physicians follow guidelines-based evaluation and treatment protocol.

The faster a patient receives medical treatment, the better the chance of recovery.

“What is most important for any stroke victim is time,” said Jacqueline Randolph, the chief’s wife and a veteran paramedic who quickly recognized her husband was having a stroke. “You can’t mess around with time. I know that’s what contributed to Quinten’s success in being able to get back to work and a lot of the normal functions he was able to restore.”

Quinten had met some friends for drinks on Jan. 18, 2015, and didn’t feel right on the way home. He was nauseated and had to pull over to throw up. He then called his wife, who stayed on the phone with him for the remainder of his drive. The two hung up as he pulled into their subdivision.

“As soon as I walked through my front door, I collapsed. I hit the floor,” he said.

A few minutes later, he heard his wife calling him from the second floor. When she came downstairs, she found him lying on his back, speaking clearly, but confused and unable to move the left side of his body.

“He goes, ‘Hey, is that my arm laying there?” Jacqueline recalled.

She immediately asked her husband to squeeze her fingers with both hands. He could only hold on with his right. His wife then lifted up his right arm and let it go. As it flopped to the ground, Jacqueline immediately stepped over her husband to get to the phone and call 911.

An ambulance arrived and took Quinten to the nearby hospital, where he was quickly evaluated and started on IV r-tPA alteplase, medication commonly used to treat clot-caused strokes. He was then taken by helicopter to a larger hospital nearby.

Quinten spent a month in the hospital, undergoing rehabilitation. He returned to work several months later, although he still felt weakness on the left side of his body.

Today, he has regained much of his original strength and considers himself to have “almost 85, 90 percent” of the quality of life he had before his stroke.

While he normally shies away from publicly sharing personal stories, he said this one is different because of the lessons that can help educate the community.

Quinten said he hopes Thursday’s drill will teach people the common signs of a stroke and emphasize the need to act urgently.

“Just like if you think somebody’s having a heart attack, the first thing you think is, ‘Call 911,’” he said. “But people who think somebody is having a stroke will instead call someone and say, ‘Can you come over and check out Uncle Bob? I think he may be having a stroke.’ You hear those stories.”

Jacqueline said she hopes the drill, and her husband’s story, will let people know that strokes can happen to anyone.

“We need to help the community and people understand that this doesn’t have to be somebody who is older than the age of 60 or 70,” she said. “I certainly didn’t think that a healthy firefighter, who can bench-press 300 pounds, would be a candidate for stroke.”

Jacqueline said people should not take chances when wondering whether a friend or loved one is suffering a stroke.

“We need to convey the message of quick recognition. Time is of essence,” she said. “It’s just better to be safe than sorry.”
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Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.

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