Stroke Awareness

New book for patients with carotid and vertebral artery dissection is now available

One of the most meaningful parts of my neurology residency training was learning how to treat patients with carotid and vertebral artery dissections. Not only was I fascinated with the concept that a young person could sneeze or cough and severely injure an important artery as a result of such a benign action, but I was surprised by how frequently we identified dissections, yet they were referred to as “rare.” They did not seem rare to me, but I figured I was biased, given the specialty I had chosen to pursue.

Following my vascular neurology fellowship completion, I then moved to Charlotte, North Carolina, and continued to frequently make this diagnosis in young, healthy individuals. I found that many of them were presenting to the emergency departments in the area with headaches and/or neck pain, and were diagnosed as having migraines or muscular spasms until I would recommend imaging of the arteries in the neck before sending them home. When imaging studies would reveal dissection of a carotid or vertebral artery, there was usually relief from both patients and healthcare providers in identifying a treatable cause for symptoms, and in knowing that we could lower the risk of stroke from that point with the appropriate management. As I saw more dissection patients in the outpatient clinic setting, I learned that many of them continued to suffer with pain, anxiety, migraines, insomnia, fatigue, and difficulty concentrating, to name a few concerns. I heard these concerns voiced from dissection patients who had suffered strokes, and from those who had no evidence of stroke on MRI. I also observed that even patients whose follow up imaging indicated that their arteries were now “healed” they still had lingering symptoms.

Over time, I found that I was having the same conversations and answering the same questions repeatedly when talking to dissection patients and their loved ones. By 2013, I thought: “Someone should compile the questions these patients have in book form and attempt to answer them.” There was no such book available, and it seemed very much worth writing, if the right person would make the time for it.

On January 1, 2016, about six months after I had joined the faculty at Duke University, Amanda Anderson, a speech-language pathologist in Charlotte, a friend, and herself one of my former carotid artery dissection patients, contacted me, telling me she wanted to work on a “project” to distract her from the daily unrelenting pain that had come to define her dissection aftermath. She had already published a workbook series for patients with language impairment (aphasia), and I knew she would be a great collaborator. I decided that since the “right person” had not made time to write the book for patients that I thought needed to be written, then I would have to be that person.

We decided early into the planning process to write much of the book in a question-and-answer format, and that we would make it as comprehensive as possible, but provide explanations that were easy to understand. We also wanted the book to illustrate that carotid and vertebral artery dissection patients are real people with real lives, and found plenty of brave patients from around the country (and even one outside of the US) who were willing to share their stories. We wanted many of the personal stories to be written by the patients themselves in order to provide their perspectives in their own voices.

This morning, after a year and a half of writing and revising, Carotid and Vertebral Artery Dissection: A Guide for Patients and Their Loved Ones was published!

It has been such a moving, unforgettable journey, and a regular reminder of why I love this patient group so much. Amanda’s relentless enthusiasm and her compassion for her fellow dissection survivors has sustained me during busy times when it was challenging to find time to write.

When A Baby Has A Stroke: A Personal Story From the Executive Director of International Alliance for Pediatric Stroke

“Your baby has a brain abnormality.”

Those were the chilling words my husband and I heard when I was 29 weeks pregnant with our third child. We were told by the perinatologist that our unborn baby’s brain ventricles were enlarged and she would probably have hydrocephalus, a condition that results when spinal fluid cannot leave the brain and can lead to increased pressure within the skull. He couldn’t tell us much more than that. We prepared for the worst and hoped for the best over the rest of my pregnancy.

Our daughter, Michelle, was born just shy of 36 weeks, and the neurosurgeon was at the delivery to confirm that she did, indeed, have hydrocephalus. Three days later, when the neurosurgeon placed a shunt (a “pump”) in her brain to divert the flow of spinal fluid, he came to us with “good” news. Her hydrocephalus was a result of a brain hemorrhage that she had suffered sometime during my pregnancy. Apparently, a hemorrhagic stroke was a one-time “event,” which meant she didn’t have any other underlying major medical conditions.

Or so we thought.

At three months old, we and the team of doctors following Michelle noticed that she wasn’t using her right arm. The first red flag. Babies should not show a hand preference before one year of age. Michelle was diagnosed with right hemiplegia (weakness on one side), which we later learned was a type of cerebral palsy. Three months later she started weekly occupational and physical therapy, which we were able to continue for over ten years! Our lives consisted of juggling two older children with Michelle’s therapy appointments, a leg surgery, many doctor visits, MRIs, and multiple ankle-foot orthotics as she grew.

This graphic from the American Heart Association/American Stroke Association is part of a public awareness campaign to inform the public that a person is never too young to have a stroke.

We were fortunate that Michelle’s stroke was diagnosed early so she could start therapy at a young age. It was also a blessing that we lived in the Chicago area with an abundance of medical specialists to help Michelle reach her full potential. Through these specialists, I was able to meet other families who also had a child that had suffered a stroke and start a local support group. Knowing that we weren’t alone was a tremendous benefit for us as parents and it allowed the kids to meet others just like them. We were also able to have some of these medical specialists donate their time to come meet with our parents at our local meetings.

Unfortunately, sometimes good things come to an end. When Michelle was ten we moved to the Augusta, Georgia area. Even though I thought I had done my homework and assembled a team of medical specialists for Michelle, we discovered that medical philosophies vary from state to state. Access to specialists and hospitals is also limited in rural, less metropolitan areas. I wasn’t able to meet as many families as I had in Chicago, so support became an online endeavor. Two years later we moved to Charlotte, North Carolina, and again had to start fresh with new doctors and yet another philosophy about treating children experiencing the effects of a stroke. It was also quite a task to integrate Michelle’s educational needs in each of the new schools.

After moving twice in two years I gave up trying to create local support and decided it was time to create a global community with medically-vetted information and resources. That is how International Alliance for Pediatric Stroke was conceived. I have connected with so many families worldwide and have been able to work with pediatric neurologists and incredible advocacy leaders to improve awareness and education. What I have learned over the years is first, there are thousands of children impacted by stroke worldwide and families are eager to connect. Second, the resources and research for this population are lacking. Third, the diagnosis of stroke in babies and children tends to be delayed. Michelle’s “brain abnormality” being discovered before birth is not typical. Often, the diagnosis of stroke in babies is not diagnosed until months or even years after birth. That means these babies are missing rehabilitation opportunities during that valuable time early in life when their brains are rapidly developing.

Mary Kay and Michelle Ballasiotes promote advocacy and raise awareness of the challenges presented by stroke in early childhood.

The consequences for missing the signs of stroke in children can be even more devastating. Stroke is one of the top ten causes of death in children, and unfortunately, I have heard from parents who have shared their heart-wrenching stories of their children not surviving because the signs and symptoms were initially missed. One of my organization’s recent projects was partnering with the American Heart/American Stroke Association to create fact sheets for infant and childhood stroke. The more education and awareness we can provide on pediatric stroke, the better off these children will be.

Michelle is now 19 years old, and she just completed her first year of college. She drives, swims, was in the marching band, played soccer, took ballet, babysits, pet sits, has had multiple part-time jobs, and has been a public speaker for pediatric stroke since she was nine years old. We didn’t know what our baby’s outcome would be when we first heard those devastating words. We still don’t know what caused her stroke, which is the case with most perinatal strokes in children. It has been a learning process to navigate this unchartered path, but I have met incredible, strong families over the journey, and am hopeful for the future of all children impacted by stroke.

Apathy around National Stroke Awareness Month is real

I have spent the past week debating whether to post publicly about an email I received from The State (South Carolina’s most widely distributed daily newspaper). Ultimately, I concluded that it was important to do so. Stroke patients need a voice, and while The Stroke Blog was started to empower the younger stroke population through sharing information pertaining to their circumstances, empowerment leads to advocacy.

Following my post on May 18, 2017, Call To Action: Americans Fear Terrorism More Than What Is Likely To Kill Them, I decided to submit the text to The State in hopes of reaching a broad audience in a place that lies in the heart of the “Stroke Belt.” Over half of hospital admissions for stroke in South Carolina involve patients under the age of 65. It seemed an appropriate medium for providing education about stroke during National Stroke Awareness Month.

The email response I received from one of the editors, frankly, shocked me: “THanks [sic] but we’ll have to pass. We don’t generally run columns on all these made-up months, weeks and days…”

“Made-up months”?

I had difficulty understanding what prompted this. Stroke has created a public health crisis, has disabled millions of Americans, and remains the fifth leading cause of death in the U.S, killing over 130,000 people annually in our country. In addition to these alarming numbers, according to the National Stroke Association, as many as 80% of strokes can be prevented. Plus, we have effective treatments within the first few hours of when a stroke starts! Therefore, stroke seemed like the perfect condition upon which to build more awareness. It’s devastating, but we have the power to change that on a large scale, both through preventative efforts and by rapidly treating strokes when they occur.

After deliberating, I replied to this particular editor, and explained that Stroke Awareness Month was being recognized by the mainstream media and hospitals across the country. This person’s quick response was that all months/days devoted to causes should be viewed the same way, whether they were about heart attacks, diabetes, “or chocolate of bicycling or … anything.”

At that point, I called a friend who has worked with hundreds of stroke patients professionally, and asked her what I was missing. I understood that there were numerous “_____ Awareness Month” recognitions, but it made perfect sense to me that the importance of calling 911, the recognition that prompt medical attention can save a person from lifelong disability, the understanding that stroke is not just a disease of the elderly, that education about the importance of smoking cessation was critical, that the knowledge that patients with high blood pressure should comply with taking their medications would all be important points for coverage in the media. And raising awareness around issues that can lessen the incidence of a disease that kills so many people annually still seemed like a good thing to me. As much as I love chocolate (and I do – seriously), lumping awareness around stroke and awareness around chocolate into the same statement rubbed me the wrong way.

In talking with my friend, she reminded me that Stroke Awareness Month was, indeed, “made up” – by President George H.W. Bush in 1989 when he signed a proclamation declaring every May as “Stroke Awareness Month.” I then began reading articles, editorials, and reflections about Stroke Awareness Month, and contemplated how important this time is to so many people affected by stroke. One of my favorites was a piece by Kirk Douglas from 2014 on The Huffington Post (click to read it).

I truly believe that everyone has the right to his or her opinions, and the right to express these opinions with language. The State can makes its own choices about the importance or lack of importance of Stroke Awareness Month, and I can make mine. I believe we do need more awareness around stroke, because I want to be treating more patients with t-PA and mechanical thrombectomy, but I can’t if they don’t call 911 or get to an emergency department quickly after a stroke starts. If they lie down on the couch to take a nap, there is a good likelihood that it will be too late to treat them once they show up at a hospital. That decision – whether to call 911 or lie down – often alters the course of a person’s life, determines whether that person will ever return to work again, will be able to care for himself or require assistance from others for decades to come.

What ultimately shifts people in the 911 direction over the lying down direction?

Awareness.

Call To Action: Americans Fear Terrorism More Than What Is Likely To Kill Them

The 2016 Chapman University Survey of American Fears gave me pause for reflection. Leading the list of what strikes fear into the more than 1,500 Americans surveyed was “corrupt government officials” (60.6% of respondents), followed by terrorist attacks (41%). Much farther down the list, only 20.3% reported “becoming seriously ill” as a cause for concern.  

As a physician who spends her days caring for patients with strokes, or “brain attacks,” I wondered how many strokes we could avoid entirely if people feared brain attacks as much as they fear terrorist attacks. According to the Centers for Disease Control, more than 795,000 strokes occur in the United States each year. An individual’s lifetime odds of dying from a stroke are approximately 1 in 31, and stroke remains the fifth overall leading cause of death in our country. What are the lifetime odds of dying at the hands of a foreign born terrorist? According to the National Safety Council, only around 1 in 45,808.

A stroke is a permanent brain injury, resulting either from a blockage preventing blood from reaching part of the brain (ischemic stroke), or from bleeding occurring in the brain (hemorrhagic stroke). While rehabilitation can assist with improving a stroke survivor’s ability to function, the injury to the brain is not reversible. Skin cells may regenerate within a wound, but cells in the brain do not. Common stroke symptoms include, but are not limited to, weakness on one side of the body, numbness on one side, sudden visual loss, slurred speech, drooping on one side of the face, and/or difficulty producing coherent words/sentences.

May is National Stroke Awareness Month, a time during which amplified efforts take place to raise public recognition of the disabling and fatal impact that stroke brings. The good news is that most strokes are preventable, but this requires effort. Just because a patient feels well does not mean that high blood pressure should be ignored. Cigarette smoking is harmful to the brain and its blood supply, but quitting is tough and requires resolve. Diabetic patients with high blood sugar readings should take these seriously and work with their healthcare providers to bring these under control. High cholesterol measurements also warrant discussion between patients and providers.

There are three major educational points I wish to make during National Stroke Awareness Month, in hopes that we can join together to prevent strokes and the horrible aftermath they produce.

1.            Atrial fibrillation is a type of irregular heart rhythm that can dramatically increase the risk for stroke. There are now a number of medications that can substantially lower the risk of stroke in these patients. If you have atrial fibrillation, it is critical that you discuss with your healthcare provider whether he or she recommends starting one of these medications.

2.            Obstructive sleep apnea is another condition that places patients at higher risk for stroke, as well as many other disease processes that can also make a stroke more likely to occur. If you have obstructive sleep apnea, please work with your healthcare provider to find an effective way to control it. Your brain will appreciate it.

3.            Stroke is not just a disease of the elderly. I frequently see patients in their 20s, 30s, and 40s presenting to the hospital with strokes. As frightening as it may seem, stroke also strikes during childhood. Tissue plasminogen activator (t-PA) is a medication that can help to dissolve blood clots when a stroke begins. Multiple studies have demonstrated that treatment with t-PA increases a patient’s chances of living independently three months after a stroke compared with those who do not receive t-PA. However, t-PA is only beneficial within the first 3 to 4.5 hours after a stroke begins, and every minute that passes decreases a patient’s chance of reaching that independent outcome. Regardless of age, when stroke symptoms start, the right call to make is 911. A person is never too young to have a stroke.

I remain much more fearful of having a stroke than I do of losing my life in a terrorist attack. Yes, national security is an important issue; however, as we battle threats that are much more likely to kill and disable Americans than terrorist attacks, let us place our fears where fear is warranted, and channel this energy into action.

#Redshoes4youngstroke: A Call to Action!

One of the central missions of The Stroke Blog since it went live in October 2014 has been to provide information to those who have survived a stroke or strokes that occurred at relatively young ages. The very first post, “Deconstructing the Mini-Stroke,” recognized that while there may be symptoms more-or-less universal to some stroke types regardless of a person’s age, that the young stroke population tends to struggle differently through what I call their stroke aftermath.

One problem in the young stroke population is that, while we have a drug (IV t-PA) that can help to minimize the long-term aftermath of ischemic stroke when administered within three to four-and-a-half hours of stroke onset, many young patients do not receive it. A number of my young patients have told me that when their symptoms began, they decided to take a nap or wait it out, either because stroke was not on their radar, or because even if it was, they believed stroke to be a disease of the elderly. Those who do take their symptoms seriously and seek emergent medical attention can be misdiagnosed, because healthcare providers may doubt that a stroke can occur at young ages. For hemorrhagic stroke, early medical attention can result in better outcomes for different reasons. Perhaps an aneurysm has ruptured requiring urgent surgical repair, or a hemorrhagic stroke patient requires emergent blood pressure control. When stroke symptoms develop, regardless of a person’s age, emergent medical attention should be sought. In the United States, this means calling 911 (not driving oneself to the hospital).

According to the Centers for Disease Control, in 2009, almost one-third of stroke hospital admissions in the U.S. were for patients under the age of 65. The Center for Health Statistics estimates that $15.5 billion was lost in productivity in the U.S. in 2008 as a result of stroke patients having to leave the workforce. When stroke strikes a young adult, it costs these individuals personally on many fronts, but it also takes its financial toll at a national level.

This is a public health problem. I want young people to know that when sudden paralysis develops in an arm or a leg, the right thing to do is to get to a hospital as quickly as possible in hopes that t-PA treatment may be a possibility. For severe strokes resulting in large artery occlusions, or “blockages,” we now have very compelling clinical trial data telling us that using a catheter to remove the blood clot is very beneficial in some patients, but only when the stroke is treated early. A delay of even a few hours may make the difference between being dependent on others for care, or returning to independence.

I challenge you to raise awareness about this problem. I challenge you to find a red pair of shoes in your closet, or purchase an inexpensive pair

Wearing my red shoes at the International Stroke Conference about 20 minutes before this blog post!

Wearing my red shoes at the International Stroke Conference about 20 minutes before this blog post! #redshoes4youngstroke

of red shoes, or if this is too much of a financial burden, to spray-paint an old pair of shoes red. Wear them proudly. The more they stand out, the better. If you are asked about them, use the opportunity to share with the questioner that a person is never too young to have a stroke. If you have a personal story to share, I challenge you to be bold enough to share it. If you are hesitant about sharing it, then communicate to others that stroke is not a disease only affecting the elderly.

Take a picture of your feet in these shoes, and post it to social media – to Facebook, Twitter, whatever. Include the hashtag #redshoes4youngstroke when you post it. Tag others in your posts whom you feel will care about this cause and participate. If you have the financial means to do so, consider making a donation to the American Stroke Association, National Stroke Association, Young Stroke, or another not-for-profit organization you feel has been supportive of the young stroke population. I will watch for interesting red shoe pictures with the #redshoes4youngstroke hashtag to come along, and will repost some of them with permission on The Stroke Blog.

Wearing my red shoes at the International Stroke Conference about 20 minutes before this blog post!

Moments before hitting “publish” for this post – hoping to bring more awareness around the plight of young stroke patients.

I’ll start. While purchasing a pair of boots for the winter online in January of this year, amazon.com recommended these shoes to me. I thought this was bizarre, as they looked nothing like the boots I had just purchased, but then it seemed almost fated. Somehow amazon.com knew me better than I knew myself, and realized that I would want these there’s-no-place-like-home shoes. Indeed I did, because I instantly decided to call them my “stroke awareness shoes.”

I wore them a few times earlier this month while caring for patients in the hospital to see how people would react, and I received multiple comments each day from patient family members, people in elevators, other parents when I picked my son up from basketball practice. I practiced giving my 20 second spiel about a person never being too young to have a stroke, and it resulted in a number of engaging conversations. Some people even said they would join me in wearing red shoes to raise stroke awareness!

I also want to thank the neurology residents at Duke University, who are not only fantastic physicians, but who have been my sounding board as I have contemplated this. They have been full of great ideas!

I am currently attending the American Heart Association/American Stroke Association’s International Stroke Conference, and am wearing my red shoes. I am encouraged at the response I have gotten over the course of the morning, and feel certain this can extend beyond those who care for stroke patients.

With greater awareness comes greater funding for research, greater compassion for the plight of a group of survivors, and greater understanding of an issue that exists in our society. Let’s wear our red shoes!