Keeping your mind
As our population ages, brain diseases are on the rise. But with the right approach to care and treatment, there is hope.
At first, only her family knew something was wrong. Jenny, whose last name is withheld to maintain her privacy, had started asking the same questions again and again about simple, everyday things. Unaccustomed to hearing the retired social worker forget where they were going for dinner or what time they were supposed to meet friends, Jenny’s husband Joe finally told her that he thought something serious was going on. In the spring of 2016, Jenny sought help at Cleveland Clinic, which specializes in the treatment of cognitive disorders. She was diagnosed with mild cognitive impairment, which can lead to dementia, and she was found to be at high risk for developing Alzheimer’s disease. Jenny remains hopeful about the future. But some days are tougher than others. “It’s painful to know that sometimes I can’t remember things that I used to think about on a regular basis,” she said. “Like how my kids were at a certain age.”
It’s one of the central paradoxes of life: As we get older and accumulate years of experience, wisdom and memories, our risk of developing brain disorders that can rob of us of those treasures increases dramatically.
It’s likely that experiences like Jenny’s are only going to become more common. Over the next 15 years, America’s elderly population will increase by 40 percent, resulting in an
It’s likely that experiences like Jenny’s are only going to become more common. Over the next 15 years, America’s elderly population will increase by 40 percent, resulting in an unprecedented explosion in the number of people with age-related neurological diseases, including Parkinson disease, stroke, the dementias and epilepsy. Alzheimer’s disease alone is expected to affect 16 million Americans by 2050—three times the number that currently live with the disorder. This urgent public health crisis presents complex challenges. These conditions severely undermine quality of life. And by their nature, severity and number, they also have a far-reaching multiplier effect, turning families upside down, exhausting caregivers and straining community resources.
unprecedented explosion in the number of people with age-related neurological diseases, including Parkinson disease, stroke, the dementias and epilepsy. Alzheimer’s disease alone is expected to affect 16 million Americans by 2050—three times the number that currently live with the disorder. This urgent public health crisis presents complex challenges. These conditions severely undermine quality of life. And by their nature, severity and number, they also have a far-reaching multiplier effect, turning families upside down, exhausting caregivers and straining community resources.
Meeting this complex challenge requires the total commitment to brain disorders that is the trademark and mission of Cleveland Clinic. Founded in 1921, the Cleveland, Ohio-based academic medical center is a recognized innovator in every aspect of health care. As a world leader in the treatment of neurological disease, Cleveland Clinic brings to bear a combination of cutting-edge technology and multidisciplinary teamwork to patient and family care, as well as clinical research.
“At the Cleveland Clinic, we’re committed to being the first to introduce new treatment options to our patients,” said Dr. Imad Najm, vice chairman of the Neurological Institute and director of the Epilepsy Center at Cleveland Clinic. “What we are doing here is pushing the frontiers on the diagnosis of neurological diseases.”
What we all need to know about brain health
There are a few common neurological disorders that we become more susceptible to as we age—dementia, stroke, movement disorders (such as Parkinson disease) and epilepsy. Each condition is accompanied by specific signs and symptoms that can be distinguished from the normal effects of aging.
Alzheimer’s disease is just one of a spectrum of cognitive disorders that neurologists classify as dementia. What distinguishes them from each other—and from the normal effects of aging—is the nature and degree of impairment. Alzheimer’s is a terminal disease; other types of dementia, which also affects millions of Americans, may be less severe but still significantly impact quality of life. “Dementia just means a change in your thinking skills that is severe enough that it interferes with your capacity to function on a day-to-day basis,” said Dr. James Leverenz, a specialist in memory disorders and director of the Lou Ruvo Center for Brain Health in Cleveland, part of the Neurological Institute.
Misplacing the car keys, for example, is annoying but not necessarily a sign of trouble. The symptoms of a neurological disorder are something else. “Where you really worry,” Leverenz said, “is when you find your car keys in the refrigerator, and you don’t remember doing it.”
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Stroke is the number one cause of disability in the U.S. and the fifth leading cause of death, killing more than 140,000 people annually. And its number one risk factor is age. Three quarters of the nearly 800,000 people in the U.S. who have strokes each year are 65 or older.
A significant proportion of strokes are preventable, the result of a range of risk factors, including smoking, diabetes, high cholesterol and a sedentary lifestyle. The most dangerous of these factors is high blood pressure, which can cause blood clots and is a common problem among older adults. “Half the strokes in the country would be eliminated if we just had people’s blood pressure under control,” said Dr. Shazam Hussain, a stroke specialist who heads up Cleveland Clinic’s Cerebrovascular Center. The vast majority of strokes—87 percent—are caused by clots that block the flow of blood to the brain. (The rest are due to ruptured blood vessels.)
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Unlike stroke, the origins of Parkinson disease, which affects around one million Americans, are not yet fully understood. A progressive movement disorder with no known cure, it involves multiple brain structures and a reduction in the amount of the neurotransmitter dopamine produced by the brain. What we do know is that the main risk factor is getting older. The condition’s average age of onset is 62.
“Aging itself can slow people down,” said Dr. Hubert Fernandez, director of the Center for Neurological Restoration at Cleveland Clinic. “So it can be hard sometimes to tease out what is part of normal aging and what is early Parkinson disease.” Another problem, he explained, is that the physical symptoms of Parkinson disease don’t appear until the illness is fairly well advanced in the brain. These symptoms include shaking of the pinky finger, dragging of the right leg, a general slowing of movement and having smaller handwriting.
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The fastest-growing U.S. population of patients with epilepsy, a seizure disorder, is people over 65, with a rate two- to three-times that of younger adults. What’s more, epilepsy can be hard to spot in seniors because they rarely have the extreme convulsions that most people associate with the condition. Instead, age-related epilepsy can present as episodes of confusion, sporadic memory loss, hearing or seeing things or a trance-like lack of awareness.
These symptoms can be easily mistaken for dementia or stroke, both of which, in fact, increase the risk of developing epilepsy. Other less common causes of the condition in older adults include trauma, blood sugar problems and infection. It’s a complicated picture that requires the attention of a specialist. And even after a diagnosis is made, epilepsy remains a unique challenge. “There is a predictable unpredictability in epilepsy,” said Najm. “The predictability is the fact that a seizure is going to happen. The unpredictable part is, we don’t know when.”
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Exploring Your Mind
With Alzheimer’s disease, neurons are damaged by abnormal protein-based plaques and tangles. As brain cells die off, certain organ structures linked to memory shrivel and shrink.
A stroke occurs when blood flow to a part of the brain is cut off, depriving neurons of oxygen. Most strokes are caused by blocked blood vessels.
Parkinson disease has been linked to the death of dopamine-producing neurons in the brain. Dopamine helps transmit messages that control a person’s movement.
Epilepsy is a chronic disorder in which chemical changes in brain cells lead to abnormal surges of electrical activity. This disrupts normal function and causes seizures.
Innovation drives the treatment of neurological disorders
Basic lifestyle and wellness choices—from weight control to healthy eating to managing blood pressure and cholesterol—can contribute to good neurological health. Yet the reality is that there are no sure ways to completely eliminate the risk of developing age-related brain disorders.
Veterinarian Dave Studzinski, now 60, learned that hard truth 10 years ago. An active father of three and a passionate fisherman, he felt “weird” twinges in his thumb and thigh while performing surgery. Studzinski made an appointment at Cleveland Clinic, where he quickly received a diagnosis of Parkinson disease—and a cutting-edge care regimen to manage the disorder. After efforts to control his tremors with various medications were unsuccessful, Studzinski underwent a procedure called deep brain stimulation, or DBS, during which electrodes were permanently implanted in his brain. The surgery worked and he has been tremor-free for the past five years. For Studzinski, who has been able to continue his veterinary practice despite his condition, Cleveland Clinic opened up a world of medical technology he never knew existed. “I can’t believe somebody thought this up,” he recalled telling his doctor.
But thinking things up is what Cleveland Clinic is all about. Its mission is to offer comprehensive, innovative care by designing treatments that meet each patient’s challenges. What about when treatments are not yet available? Then the mission is to find new ones. And that starts with transformative research.
“Every research project we undertake has a clear patient benefit in mind from the design phase,” said Dr. Andre Machado, Studzinski’s neurosurgeon and chairman of Cleveland Clinic’s Neurological Institute. “We don’t have barriers between the science part of Cleveland Clinic and the clinical part. Knowledge and experience flow both ways—the scientists go to the operating rooms and the surgeons participate in laboratory discovery.”
The Neurological Institute comprises 14 departments and centers, each dedicated to a specific neurological disorder. With 300-plus doctors, surgeons and researchers, the institute’s coverage extends well-beyond its main campus in Cleveland. Integrated neurological care teams are located in Cleveland’s nearby suburbs, Weston, Florida and Abu Dhabi, United Arab Emirates. Additionally, the Lou Ruvo Center for Brain Health in Las Vegas, Nevada is exclusively dedicated to the treatment of dementia and neurodegenerative disorders.
For stroke patients, the tools include one of the first-ever mobile stroke units, an ambulance outfitted with a CAT scanner for the fastest-possible diagnosis and treatment, even before the patient gets to the hospital. Cutting-edge surgical and procedural technologies pioneered at Cleveland Clinic have also become a crucial tool for treatment of stroke. The stent retriever, for example, approved in recent years by the FDA, is a breakthrough device that removes large clots from blood vessels leading to the brain. Meanwhile, for stroke survivors who live with long-term paralysis, new surgical procedures are yielding promising results. In late 2016, after a decade of research by a team of Cleveland Clinic investigators, Machado became the first in the world to use DBS for stroke recovery as part of an ongoing clinical trial. The patient, who had been severely paralyzed by a stroke, had electrodes surgically implanted in her cerebellum. They delivered a controlled electric charge, which, along with several weeks of physical therapy, helped restore a good proportion of the movement she had lost. Paralysis recovery isn’t the only application for this groundbreaking procedure. In 2019, Cleveland Clinic became one of the first medical centers in the U.S. to offer DBS for patients with medically intractable seizures. The procedure is also used routinely to treat Parkinson disease, essential tremor and dystonia (a type of spasm) in patients, who, like Studzinski, have lost control of their movements.
Cleveland Clinic is pioneering another procedure to benefit these patients, as well. In the last year, the hospital began offering MR-guided focused ultrasound for the treatment of tremors. By literally burning the site of abnormal activity in the brain, the procedure has been able to reduce tremors in patients with essential tremor by as much as 50 percent.
Not every patient with Parkinson disease or essential tremor needs surgery, however. And while drugs don’t always work, or come with side effects and complications, there’s optimism about the future. “The clinical trials we had in the past decade are what we call symptomatic clinical trials, treatments that improve symptoms,” Fernandez said. “Now we’re in the era of medications that can delay or stop the disease progression.” Cleveland Clinic, he adds, is one of a handful of centers in the world conducting the first-ever study of an immunotherapy to target the condition. It’s a treatment that works by stimulating the body’s natural defenses to help break down the abnormal clumps of protein found in the brains of Parkinson patients.
Cleveland Clinic is also a leader in the search for effective new drugs to treat Alzheimer’s and is currently participating in more than 20 clinical trials to treat the condition. “Some are focused on just treating symptoms,” said Leverenz, “but increasingly we’re working on medications that may actually treat the disease itself.” According to Leverenz, these include an antibody that attacks amyloid deposits, the sticky, neuron-destroying protein plaques found in the brains of people with the disease. Jenny is one of the patients taking part in the trial of the drug, which is called Aducanumab.
There’s also good news for those with other forms of dementia. State-of-the-art brain imaging makes it possible to measure the volume of different parts of the brain to see if there has been atrophy or shrinkage, which helps doctors confirm a patient’s diagnosis and track the progression of their disease.
Imaging innovations have also been vital to treating patients with late-onset epilepsy. Identifying the part of the brain where a seizure begins can aid diagnosis and influence treatment decisions. One of the imaging methods Cleveland Clinic deploys is called SPECT, or single-photon emission computed tomography, which measures blood flow in the brain. (During a seizure, blood flow to the site of origin increases.)
For those already getting care, the Epilepsy Monitoring Unit, an area at the main campus designed to observe brain activity around the clock, can remotely monitor patients in Cleveland Clinic locations all over the world.
Building a community of wellness and health
Cleveland Clinic offers more than just cutting-edge interventions, however. It offers a unique, holistic care experience by assembling interdisciplinary teams for every patient. “We have broken the traditional silos of academic medicine,” said Machado.
Although the members of these teams have a range of expertise, they are able to provide highly individualized care, which is essential to helping people manage their conditions. But perhaps the most important team member is still the patient. “It is not our job to dictate what is best,” Machado said. “Our job is to empower each patient to make the choice that is right for them.”
Cleveland Clinic care providers will go to extraordinary lengths to do so, as Studzinski learned one December. He needed to schedule his second DBS procedure before the end of the year to avoid potential insurance issues. (The treatment usually involves separate operations for the left and right side of the brain.) Although there were no regular openings in the schedule, Machado and the surgical team showed up on Christmas Eve to operate.
This humane approach to care has cumulative benefits, creating a community-focused culture that helps patients and caregivers in a variety of ways. It’s well established, for example, that the diagnosis of a neurological disease can leave patients and their families feeling cut off from the rest of the world. Cleveland Clinic’s unique approach helps them cope. “Our deepest desire as human beings is to be seen for who we are,” said Dr. Adrienne Boissy, a neurologist who, as Cleveland Clinic’s chief experience officer, is an expert on doctor-patient relationships. “That in and of itself, letting someone know that you see that fragility and humanity, the person behind the disease names and all the other stuff, is a beautiful, healing thing.”
It took some time, but after nearly two years of treatment, Jenny has come to terms with her condition. And with the help of her Cleveland Clinic doctors and caregivers, as well as the support of her immediate family and a strong community faith, the retired social worker is maintaining a high quality of life. She exercises regularly and has even renewed her clinical license. “I have days I'm a little low. I wish my brain could conjure up some of the things I used to be able to do, but I've kind of made peace with it,” Jenny said. “I think for the most part I'm hopeful.”
Machado takes this to heart. “A patient’s hope is our mission. If we have not found a better treatment that means we are not done. And nothing will stop us.”