Al Bella lay on his kitchen floor as the muscles in his neck convulsed, leaving him unable to speak and struggling to breathe. His panicked daughter called to her mother, “Daddy is sleeping on the floor." Bella — a fit marathon runner — was having a stroke at age 39.
Carin Stahlka thought someone stabbed her in the back of the head. When she turned around, no one was there, but the immense pain was real. Stahlka, then 36, had just had a stroke. She had no idea. The paramedics who assisted her poolside while she was on vacation in Florida didn’t know, either.
Al Bella has never smoked and, before his stroke, would wake up at 4:30 every morning to run before work. He had a hole between the walls of his heart — the only way it could have been detected before his event was through an ultrasound. The defect carries no symptoms other than the stroke itself. He had no idea he was at risk.
Carin Stahlka wasn’t overweight, she didn’t have high cholesterol and she thought she had her blood pressure under control with medication.
The two Lakeview neighbors have added a special layer to their friendship, learning to navigate life in a post-stroke world neither ever expected.
“You don’t think it’s going to happen at an early age,” Stahlka said. “You think, ‘I’ve got years; no problem.’ You think it happens to other people.”
But believing that could be deadly, especially for Western New Yorkers.
Residents of the region are some of the most vulnerable and at risk of heart disease and stroke in the country. Western New York has the highest rate of cardiovascular disease and stroke in the Northeast, matching the stroke rates of the “stroke belt” areas in the Southeast, according to Dr. L. Nelson Hopkins, a professor of neurology and radiology and the president of Buffalo’s Gates Vascular Institute.
But these high rates aren’t anything new. They received attention from the medical community and beyond in 2006 when an offshoot of the University at Buffalo’s neurological institute released an extensive study.
So what’s changed in the almost 10 years since that study was released? Not too much, if you’re looking at the rates of incidents.
“The rates are still unacceptably higher – higher than what we … see in the rest of the state and certainly relative to the rest of the country,” said Dr. Vijay S. Iyer, a clinical associate professor in UB’s Department of Medicine.
But many doctors say awareness is on the climb, and that more patients are coming in mindful of risk factors – although there is still plenty of room for growth. That leaves survivors like Stahlka and Bella eager to share their stories. They’re not the faces of what many would consider a typical stroke victim.
“No one’s invulnerable,” said Stahlka’s physician, Dr. JoAnne Cobler.
Understanding the statistics
Back in 2006, UB’s Jacobs Neurological Institute’s Research Center for Stroke and Heart Disease – since disbanded – found rates of stroke death in Western New York were 23 percent higher than the national rate, and 79 percent higher than the aggregate New York State rate.
A report published by Kaleida Health in 2013 states that while the benchmark for cardiovascular disease mortality rate in the entire state is 289.2 per every 100,000 people, Erie County’s is 350.7 per 100,000 and Niagara County is 421.1 per 100,000.
Physicians agree: There’s no single reason why Western New Yorkers are facing strokes and heart disease at alarming rates.
“It’s multifactorial; I think it is based on a lot of things,” said Hopkins of the vascular center.
He and other physicians point to Western New York’s population, which includes many people of Eastern European descent with cultures that tend to have high-fat diets. Hopkins added that Buffalo’s “sports town mentality” isn’t helping, with a pizza shop on every corner.
Iyer, Hopkins and others also cite the smoking habits of people in the area as a leading culprit of heart disease and stroke. Western New York has one of the highest smoking rates in the state – 26 percent of people smoke in Erie County and 27 percent in Niagara County, according to research from Roswell Park Cancer Institute.
Our region is also home to a “relatively sedentary population” in the winter, Hopkins said. That’s something Stahlka, who has focused on a healthy lifestyle since her stroke, has noticed, too.
She’s originally from Sweden, where it’s normal to bike to the grocery store or walk to the bus stop; here, everyone drives.
Iyer also said the shortage of primary caregivers in WNY is a problem. “It makes it harder for people to find care,” said Iver. “All of this factors into how we deliver healthcare to our public.”
A mess of misconceptions
Stahlka, now 40, admits when she had a stroke, she was clueless about symptoms and her own risks. She knew her grandmother had a stroke and her grandfather had died of a heart attack, but how those events factored into her level of risk didn’t really occur to her.
Iyer says people need to be more aware of their “risk profiles.” Risk profiles come together by considering one’s family history, blood pressure, cholesterol levels, diet and smoking habits.
“It’s not uncommon to see people who came in with a heart attack and say, ‘Well, my cholesterol was normal.’ But the fact was their cholesterol was not normal,” Iyer said. “They had high blood pressure, they had diabetes and their cholesterol may have been normal for somebody who does not have these risk factors, but for them, it was higher than it should have been.”
Iyer said finding out your risk profile is empowering and can be as simple as using an online “calculator” to lay out concerns, which you can then bring to a primary caregiver.
Cobler, who is a doctor at Buffalo Cardiology & Pulmonary Associates and a board member of the American Heart Association, said she sees patients who have a false understanding of what it means to be healthy. A thin person who doesn’t exercise is at a greater risk for heart attack than someone who is overweight and exercises regularly, said Cobler.
“People don’t get that,” she said. “They think they’re thin and don’t have to worry, well, that’s not true. Fitness makes a big difference.”
What you should look out for
Stahlka didn’t know the symptoms of stroke – although the only one she really had was dizziness. Doctors, like neurologist Vernice Bates, a medical director for the DENT Neurological Institute, say patients often wait too long to get to the hospital after minor and major events, or don’t know what to be aware of.
By the time Stahlka was diagnosed, it was too late to do anything to save the parts of her brain that were damaged. She lost her ability to balance (since mostly regained) and it was about three months before her sensory system normalized.
Bella, due to the fast actions of his wife and daughter, was able to get a clot-busting shot that prevented any severe outcomes. He knows he’s lucky.
“If you have a bad event, then the things that can be done in a hospital setting can only be done if you get there within a very short period of time,” Dr. Bates said. “So within…one hour, three hours, up to maybe six hours.”
Bates says often people ignore minor events that could lead up to a major stroke, like weakness or numbness in one side or sudden trouble speaking or seeing to one side. Even though slight numbness might not seem like much, Bates says people with those types of minor events still need go the hospital or contact a physician immediately.
Cobler says people are often just as unaware of the symptoms that come before a heart attack, like a decrease in your exercise tolerance. She warns people – especially women, to whom heart disease is the leading cause of death – to pay attention to pressure or a squeezing sensation in the chest or arm, excessive fatigue or pain in the jaw or lower back.
A community responds
“In the big picture, we have a ways to go,” said Erie County Commissioner of Health Gale Burstein. “I think rates have been declining a bit. We’re in a good downward trend, but we still have far more significant morbidities in Erie County compared to the rest of New York State, and compared to the rest of the country.”
That’s why Burstein has been working with the county to increase awareness programs and get Western New York healthier. Erie County has joined the “Million Hearts” campaign, which aims to prevent one million heart attacks and strokes by 2017.
Cobler says, over time, she has noticed more people coming in to her office aware of their family history and risk factors. There’s progress.
Buffalo is also home to the relatively new Gates Vascular Center, which Hopkins says boasts an innovative way to care for patients, bringing medical professionals who are often in separate departments into one building.
Hopkins said the institute’s cardiac surgeons are ranked in the top 15 best teams in the country. The center also provides educational classes to the public, Hopkins said.
But physicians like Iyer would like to see the medical and local communities do more to turn around the area’s unsettling statistics.
“I think both from an education standpoint and from a standpoint of providing those interventions that people need, we have to do better,” he said.
Back to reality
Bella sometimes wears a T-shirt citing himself as a stroke survivor. He doesn’t mind people coming up to him to ask if it’s true. He wants to do his part to help and inform.
He remembers the fear as the ambulance rushed him to the hospital last January. He thought of his three kids, his wife. He doesn’t ever want to be in that position again.
Bella finds comfort in his friendship with Stahlka, in having someone close “who gets it,” as they maneuver through sometimes-fuzzy memories and statistically higher risks of stroke than those who’ve never had one.
But despite her past, Stahlka has a tenacious spirit. She refuses to live in fear. “I’m not scared anymore; I really am not,” she says firmly, commenting on how healthy she now lives.
It’s that spirit, perhaps, that has rubbed off on Bella. He’s aiming to do an Ironman competition in October.
Four ways to handle stress
The American Heart Association reports stress can affect factors that increase the risk of heart disease like high blood pressure, cholesterol levels, smoking, physical inactivity and overeating. Here are some ways to reduce it:
Staying physically active is one of the best ways to help reduce stress, said Dr. JoAnne Cobler. Exercise will, of course, also help keep your heart healthy. Cobler suggests 150 minutes of aerobic exercise per week with resistance exercise a couple times a week. But start off slow if you’re not regularly working out. Even taking the stairs or parking farther away are good first steps.
Yoga is a good way to combine exercise with the quest for a relaxed mind. But if you’re just looking to calm yourself, you can also check out mindfulness meditation routines. There are audio recordings available on the web and on smartphone apps to help guide you to a more at-ease mind.
3. Find your bliss
Stress may make you feel awful, so find something that makes you feel good. Whether it’s reading, painting, taking a walk, meeting up with friends – do something that increases pleasure.
5. Avoid toxic behaviors
Eating too much or too little, drinking alcohol or smoking, working too much or procrastinating can actually lead to more stress. Try to catch yourself before making destructive behaviors into habits.
What’s a “good” number, anyway?
Dr. JoAnne Cobler says the general population should aim for a blood pressure at or below 120/80, which typically leaves you at a lower risk for heart attack or stroke.
Cobler stresses it’s important to understand the components that make up cholesterol numbers. There is LDL (low-density lipoprotein), known as “bad cholesterol,” and HDL (high-density lipoprotein), or “good cholesterol.”
Cobler says your target levels depend on your risk factors. If you have risk factors, your baseline LDL should be under 100. If you have coronary artery disease, for example, your LDL should be below 70, said Cobler. But if you have no risks, your level should at least be under 130. Women should have an HDL level greater than 50 and men greater than 40, Cobler said.
What shouldn’t I eat?
It’s tough, but Buffalo’s famous wings and pizza are not helping our situation. Try trading in the chicken wing dip for red pepper hummus dip. It may not be as traditional, but it’s better for your heart.
High alcohol consumption can lead to heart failure, high blood pressure and an increased caloric intake – which can lead to obesity and an increased risk of diabetes, according the American Heart Association.
Erie County Health Commissioner Gale Burstein, a pediatrician, says the number one thing she tells her teenage patients is to cut sweetened beverages out of their diets. Kids who are drinking four cans of soda a day are consuming a full cup of sugar, which can cause an increase in stored body fats. She recommends drinking unsweetened iced tea and, if you’re still craving something sweet, to add your own sugar to be in control of what you’re consuming.
Some foods labeled ‘low fat’
Be wary of packaging. Some packaged foods labeled low fat are high in sugar – the opposite may also be true. Read labels. A granola bar may seem healthy by how it’s advertised – but if it’s got 12 grams of sugar per serving, it’s not the healthiest snack.