MARCH 2020 | FUTUREOFPERSONALHEALTH.COM
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NEUROLOGICAL DISORDERS
BRAIN AWARENESS WEEK
The Cameron Boyce Foundation Preserving the actor’s legacy through kindness and humanitarian initiatives
Former NBA player Brian Grant on healthy living with Parkinson’s disease
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WIN a year’s supply of Prebiotin® Prebiotics worth $700! Enter at: u
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Follow these steps to help manage migraines in the workplace
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Researching for a cure for epilepsy Accelerating research. Driving discovery. Inspiring hope.
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JOIN US AT THESE CONFERENCES
THE AMERICAN ACADEMY OF NEUROLOGY’S ANNUAL MEETING Toronto, ON, Canada April 25-May 1, 2020
Breakthroughs in Research and Treatment of Brain Disease Offer Hope Brain disease such as Alzheimer’s and Parkinson’s disease, epilepsy, stroke, migraine, and many others affect 1 in every 6 Americans and are the leading causes of disability worldwide.
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COMMITMENT TO CURES Toronto, ON, Canada April 29, 2020
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THE 10TH ANNUAL TRAUMATIC BRAIN INJURY CONFERENCE Washington, D.C. June 1-2, 2020
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EPILEPSY AWARENESS DAY AT DISNEYLAND Anaheim, CA November 2-4, 2020
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PARKINSON’S EXPO Palmetto, FL March 6, 2021 Presented by the Neuro Challenge Foundation for Parkinson’s: The Parkinson’s Expo is an event designed to educate, engage, and empower the Parkinson’s community by offering high-quality, important information presented by nationally renowned experts in the field, interactive demonstrations, and a myriad of resources to help people live well with the disease today. The Expo is offered at no charge and is the largest event of its kind in the country. Sponsorship opportunities are available. Learn more at www. neurochallenge.org
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the development and approval of an unprecedented explosion of new therapies — seven drugs and four devices — within the past several years.
ental health disorders and chronic pain, both of which are associated with functional and structural changes in the brain, affect about 100 million more Americans. Below, we list a few examples that illustrate the exciting progress that has recently been made in our understanding and treatment of brain disease.
David W. Dodick M.D., FAAN Board Chair, American Brain Foundation
Research and treatment The first gene therapy was approved to treat children under the age of two years with spinal muscular atrophy (SMA), a leading genetic cause of infant mortality. Physical activity, a healthy diet, and blood pressure control, while well known to prevent stroke, have recently been demonstrated to be effective in preventing cognitive impairment and dementia. A favorable lifestyle is even effective in preventing dementia in those who are genetically at high risk. It’s therefore important for all of us to promote healthy lifestyles for friends, family, patients, ourselves, and our community.
Major advances in stroke care were realized just within the past year. A single “polypill” (containing aspirin, a statin, and two anti-hypertensive drugs), which should improve medication compliance, was shown to significantly reduce the risk of stroke. In addition, the window of time from onset of symptoms to safe and effective intervention with clot-busting treatments has been extended. Important advances have led to the identification of factors that predict disease course in patients with multiple sclerosis, and a number of therapies that disrupt the course of the disease have become available. An understanding of migraine at the molecular level has led to
The road ahead But there is still so much work to do: while unprecedented advances in knowledge and treatment for many brain diseases have been made, we still do not have treatments that cure or even slow the progression of many brain diseases, including Alzheimer’s disease, Parkinson’s disease, amyotrophic lateral sclerosis (ALS), and malignant brain tumors. However, we now have an understanding that the underlying mechanism of one brain disease is shared by several other brain diseases. Therefore, the American Brain Foundation and its partner, the American Academy of Neurology (the world’s largest association of neurologists), fund research across the entire spectrum of brain diseases. They are well-positioned to realize the potential of curing many diseases through the cure of one. n
Publisher Victoria Borkowski Managing Director Luciana Olson Lead Designer Tiffany Pryor Designer Tiffany Jackson Lead Editor Mina Fanous Copy Editor Sydney Scott Director of Sales Stephanie King Director of Product Faye Godfrey Cover Photo Ben Cope All photos are credited to Getty Images unless otherwise specified. This section was created by Mediaplanet and did not involve USA Today. FOLLOW US: @MEDIAPLANETUSA
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5 Steps for Those Newly Diagnosed With Parkinson’s Disease
for your emotional health is as important as addressing your physical symptoms.
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Create healthy habits A healthy diet and ample self-care are key to living well with Parkinson’s disease. Good nutrition can improve medication delivery, and plenty of rest improves mood.
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Be active in whatever way works best for you Research shows exercise helps people with Parkinson’s manage their symptoms. Find an exercise program that you love and talk with your doctor to make sure the exercises are safe for you.
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Find a doctor who is an expert in Parkinson’s disease Seeking treatment from a neurologist, or, when possible, a movement disorder specialist — a neurologist with additional training to treat people with Parkinson’s at every stage of the disease — is a key addition to a quality care team.
For some, a Parkinson’s diagnosis comes as a relief, an explanation for previously unexplained symptoms. Others may be stunned, struggling with what the future may look like. As you begin your journey with Parkinson’s disease, it’s important to know you are not alone. 4 • FUTUREOFPERSONALHEALTH.COM
If you or a loved one are newly diagnosed, these five steps can help you begin to live well with Parkinson’s:
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Determine your personal goals and priorities As you begin to build your life after a Parkinson’s diagnosis, setting clear personal goals, then
acting on them, can help you live well.
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Find someone you can talk to and stay connected Interpersonal connections are vital to living well with Parkinson’s. Find someone to talk to, and be open and honest about your experience. Caring
The Parkinson’s Foundation makes life better for people with Parkinson’s disease. That’s why we recently launched “Newly Diagnosed: Building a Better Life with Parkinson’s” to help people with Parkinson’s throughout every step of their journey. More resources and information, including a “Newly Diagnosed” kit, can be found at Parkinson. org/NewlyDiagnosed. Learn more about the resources and support that the Parkinson’s Foundation offers at Parkinson.org or contact the free Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or helpline@parkinson.org to find expert care in your area, answers to your questions, nearby resources, and more. n John Lehr, President and CEO, Parkinson’s Foundation
How New Areas of Research Are Helping Develop a Better Understanding of Parkinson’s Disease SPONSORED BY
Over a million people in the United States have Parkinson’s disease, a neurodegenerative disorder in which brain cells progressively die. Sixty thousand people are diagnosed with the disease every year in the United States. People with Parkinson’s disease have low concentrations of dopamine in their brain. Symptoms of the disease include tremor, extreme slowness of movement, rigidity, and impaired balance, as well as difficulties speaking and swallowing. Parkinson’s disease was first identified approximately 200 years ago. However, there weren’t many treatments and therapies until the 1950s, when researchers first identified low dopamine levels in patients with Parkinson’s disease. Since then, improving the function of the dopamine system through dopamine replacement therapy and other measures has been the standard treatment for people with Parkinson’s disease. Levodopa therapy is typically used to increase dopamine levels in
nerve cells. As the disease progresses, however, it can start to lose effectiveness after 5-10 years of use. Understanding “off time” Patients with Parkinson’s disease may experience “off” episodes. These are periods of time when the patient’s medication stops working optimally and their symptoms come back before it’s time for their next scheduled dose of dopamine replacement therapy. During an “off” episode, patients with Parkinson’s disease may have slow movement and rigidity, as well as difficulty doing things like getting out of bed without assistance, eating a meal without help, or walking out of an elevator without assistance. According to researchers, other symptoms could include tremor, a sense of weakness, and difficulty swallowing. An “off” period could look different for each person with the disease. For example, some patients can have rapid onset of symptoms, while others experience a more gradual onset. “Off” periods can occur at different points of the day too, such as early morning muscle cramps, but “off” time can also occur throughout the day. Not every person with Parkinson’s disease will experience “off ” time. But a patient who does have “off ” episodes should talk to their
doctor about how to manage their condition. They should keep notes of how often, and when, “off ” times occur and what symptoms they experience, so their doctor can have a good understanding of what’s happening. New focus Now there is another area of research: adenosine receptors. Researchers have studied several receptors in the brain to gain insight into the disease. One sub-type that has particular interest is adenosine A2A receptors. As Parkinson’s disease advances, dopamine levels decrease and the number of adenosine A2A receptors increase. Since adenosine A2A receptors work with dopamine, it’s thought to play a role in impacting a patient’s motor function. Research suggests that adenosine A2A receptors help control activity of the dopamine system by acting like a brake on the activity of dopamine. “Our current understanding is that dopamine facilitates movement and adenosine A2A recep-
tors suppress it,” says neurological disorders researcher, Akihisa Mori, Ph.D., Fellow and Global Medical Lead CNS, of Medical Affairs for Kyowa Kirin Co., Ltd in Japan. The future This expanding area of research is exciting for Dr. Mori and those in the movement disorder community. “This opens a new direction for our understanding of Parkinson’s disease,” says Dr. Mori, who’s been studying adenosine receptor physiology since the 1990s. Over the years, there’s been little innovation into understanding and controlling the disease beyond dopamine. But patients with Parkinson’s disease, caregivers, and doctors are eager to learn new ways to manage it. “That’s why this new understanding of the role adenosine A2A receptors play with regards to dopamine holds so much promise,” says Dr. Mori. For more information, patients can visit challengingparkinsons.com. n Kristen Castillo MEDIAPLANET • 5
Using Epilepsy Patient Data to Improve Health Outcomes The Epilepsy Learning Healthcare System strives to use data to help all epilepsy patients live a high quality of life. In an exciting new model, patients, families, healthcare providers, and researchers work together as equal partners to improve both the quality of care and outcomes for patients. This is called the Learning Healthcare System. The Epilepsy Learning Healthcare System (ELHS) is a patient-centered network that is hosted by the Epilepsy Foundation and the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital on behalf of a large group of partners. ELHS’s vision is for all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects. Twelve epilepsy centers in the United States are partnering with the Epilepsy Foundation and other key professional and community services organizations. Here’s how it works: • ELHS centers across the country gather data into a central registry. • The network analyzes data to identify gaps in care or outcomes. • ELHS site improvement teams are formed at each center and include healthcare providers, patients and families, and local community services partners. • ELHS site teams generate and test new ideas using the Institute for Healthcare Improvement’s Plan-DoStudy-Act (PDSA) cycles. • Members share their successful improvements with the network during monthly webinars and twiceyearly learning sessions. • Patients and families participate at every step to drive priorities, design new initiatives, and give feedback on improvements. ELHS will transform epilepsy care, harnessing the power of people with epilepsy and their families, healthcare providers, and community services teams to optimize seizure control and quality of life. Brandy Fureman, Ph.D., Chief Outcomes Officer, Epilepsy Foundation 6 • FUTUREOFPERSONALHEALTH.COM
Mental Health Concerns in Parkinson’s Disease Parkinson’s disease can be accompanied by a number of mental health diffıculties including cognitive decline and dementia; hallucinations and delusions; and depression and anxiety.
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hile every person’s experience with Parkinson’s disease (PD) is different, mental health challenges and changes are fairly common. Cognitive decline and dementia Cognitive decline refers generally to a decrease in thinking abilities. The cognitive problems of PD are characterized by executive dysfunction, or the inability to plan and organize activities in order to solve problems and complete tasks with multiple steps. Visuo-spatial dysfunction, in which a person has trouble navigating the spatial world around them, is often seen as well. Dementia is defined as cognitive decline that affects a person’s ability to independently carry out his or her daily activities, such as preparing meals or getting to appointments. Hallucinations and delusions Hallucinations are false perceptions. If hallucinations occur in PD, they are usually visual and can range from a fleeting image to a very vivid and scary vision. Delusions are fixed beliefs that contradict reality or rational argument. In PD, delusions can be of a paranoid nature, including the belief that someone is stealing or that a spouse is having an affair.
Rebecca Gilbert, M.D., Ph.D. Chief Scientifıc Offıcer, American Parkinson Disease Association
Depression and anxiety Depression is a mood disorder that causes persistent feelings of sadness. It can be a very early symptom of Parkinson’s, sometimes appearing before motor symptoms, and can also be prominent in more advanced stages as well. Anxiety is the intense, excessive, and persistent worry and fear about everyday situations. Anxiety can be a prominent symptom in PD at all stages of disease. Managing mental health Helpful tips when facing mental health issues in PD: • Consider other illnesses or conditions: Mental health issues can be triggered or exacerbated by the presence of another illness or condition. A very common scenario is that cognition worsens or hallucinations start as the initial sign of a urinary tract infection. Other conditions to
consider include abnormal thyroid function, low vitamin B12, and head trauma. • Review medications with your doctor: Certain medications given for urinary frequency, migraine, seizures, anxiety, and other conditions can interfere with cognitive function. Be sure to review all medications frequently with your neurologist. • Consider whether the mental health issue is affected by PD medication dosing: depression and anxiety, for example, can fluctuate with medication timing. If this is the case, adjusting PD medications (with a doctor’s supervision) may help. Non-drug approaches to managing mental health issues should be tried first. These include: • Maintaining a regular routine • Engaging in mental, physical, and social activities • Joining a support group for both the person with PD and the care partner Consider medications. There are medications available to treat cognitive changes, hallucinations, depression, and anxiety. Discuss the risks and benefits of these medications with your neurologist. Most importantly, talk to your doctor. Bring up any new issues and concerns early so they can be properly assessed and addressed. ■
Living With Dyskinesia, Off Time, and Social Anxiety SPONSORED
People battling Parkinson’s disease often deal with side effects like dyskinesia — and the embarrassment they can cause. Parkinson’s disease (PD), a progressive disorder of the nervous system affecting movement, affects nearly a million people in the United States alone. While medications can effectively manage symptoms, some of their side effects can be difficult to manage in and of themselves. “In Parkinson’s disease, dyskinesias — involuntary, purposeless, non-rhythmic, dance-like or jerky movements — are a result of taking the most common Parkinson’s medication, levodopa,” explains Duarte Machado, M.D., co-director of Hartford Healthcare Movement Disorders Center in Cheshire, Connecticut. Dyskinesia’s impact This type of dyskinesia, known as levodopa-induced dyskinesias (LID) is often confused with the
tremors associated with Parkinson’s, but the latter is a symptom of the disease while the former is a side effect of the medication. “Dyskinesias are characterized by movements that are non-rhythmic, purposeless, and unpredictable,” Dr. Machado says. “Tremor is a rhythmic movement caused by the rapid alternating contraction and relaxation of muscles.” It’s estimated that as much as 80 percent of PD patients have some level of LID, and Dr. Machado stresses that dyskinesia is far more than an irritation. “Dyskinesia has been found to worsen the negative impact PD has on a patient’s quality of life, significantly worsen daily functioning, and cause social stigma. Dyskinesias are also associated with an increased risk of falls and healthcare costs.” Dyskinesia often also causes stress and social anxiety for Parkinson’s patients; in a study conducted by The Parkinson Alliance in 2019, 47 percent of PD patients reported experiencing anxiety in social situations due to their dyskinesia, with 28 percent characterizing that anxiety as moderate to severe. “Off” time Most patients experience dyskinesia during what’s called the “on” period
— the time when the medication’s presence in the body and its effects are high. When the medication begins to wear off, the patient enters into what’s called an “off” time — and while this may result in a reduction in dyskinesia, it can also mean a return of Parkinson’s symptoms. As a result, many patients find themselves forced to choose between two different experiences. Dr. Machado encourages PD patients to discuss their dyskinesia and off time openly with their caregivers and doctors. “A person should discuss whether he or she has ‘jerking or twisting movements’ occurring when his or her Parkinson’s disease medications are working,” he advises, “and also track how often off time is experienced. This can be done by keeping a symptom diary, for example.” How to help It is important for caregivers and loved ones to encourage PD patients not to ignore dyskinesia out of embarrassment. “Caregivers and loved ones should bring dyskinesias to the attention of the PD patient and his or her doctor,” Dr. Machado advises. When it comes to both the physical manifestation of dyskinesia and the social anxiety it can cause, Machado believes
they share a solution. “The main strategy for managing dyskinesia in patients with PD is to use an orally administered, high-dose, extended-release formulation of amantadine specifically approved for the treatment of dyskinesia in patients with PD receiving levodopa-based therapy,” he says. “This is also the best way to reduce the social awkwardness and embarrassment, as this medication reduces total daily off time and troublesome dyskinesia, resulting in an increase in total daily on time without dyskinesia (also known as good on time).” Alternative strategies for PD patients include speaking to their doctor about fractionating their levodopa dose, lowering the overall dose of dopaminergic agents, and possibly adding a longer-acting dopamine agonist. It’s important to realize that these all have the potential to worsen dyskinesia or “off” time. Caregivers and patients must be sure to talk to their doctors about dyskinesia and off time. The most powerful tool for people living with Parkinson’s disease is hope; having a way to minimize or eliminate dyskinesias frees people up to focus on the truly important thing: living well. n Jeff Somers MEDIAPLANET • 7
Honoring Actor and Humanitarian Cameron Boyce’s Legacy
His parents, Libby and Victor Boyce, started The Cameron Boyce Foundation (TCBF) to support the causes that Cameron was passionate about: ending gun violence, advocating for clean water, and spreading kindness. They’re also advocates for epilepsy awareness. SUDEP Boyce, who was known for his roles as Carlos in Disney Channel’s “Descendants” and “Descendants 2” and Luke in “Jessie,” started having seizures when he was 16. He was treated by a neurologist and was taking seizure medicine for a year before his death.
The Emmy Award-winner didn’t complain and didn’t let epilepsy interfere with his life. He still played basketball, danced, and hung out with friends. His career was growing. Then last July, Boyce died of sudden unexpected death in epilepsy (SUDEP). SUDEP is rare and occurs when a person with epilepsy, who was otherwise healthy, dies unexpectedly. Every year, 1 in 1,000 people with epilepsy dies from SUDEP. Awareness His family was unaware of SUDEP before Boyce’s death. Now they’re raising awareness about the condition. TCBF has partnered with the Epilepsy Foundation on a campaign called K(NO)W SUDEP NOW! They want to raise awareness about epilepsy, provide tools and resources for individuals and families to reduce SUDEP, and
ANYONE WITH A BR AIN C AN HAV E A SEIZURE ®
raise money for research to help end SUDEP and epilepsy. They’ve also partnered with Citizens United for Research in Epilepsy (CURE). Making the world a better place From a young age, Boyce was a helper. He used his platform for good. Now those good deeds live on. One of his last projects, called “Wielding Peace,” is a social media campaign aimed at fighting gun violence. Their foundation is also continuing his work with Thirst Project, the world’s largest youth water organization, which is committed to providing access to safe, clean water for those in need. His mother says they’re trying to do him justice and make him proud. She says, “He would most definitely want us to continue working on things that make the world a better place.” ■ Kristen Castillo
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PHOTO: BEN COPE
Actor and humanitarian Cameron Boyce was passionate about being a positive force in the world. In 2019, he unexpectedly died at age 20. But his legacy — and the good deeds he inspires — live on.
Brian Grant Shares What It’s Like to Live With Parkinson’s Disease
You were diagnosed with Parkinson’s disease (PD) at the age of 36, something known as young-onset Parkinson’s. How did you cope with the diagnosis? When I was diagnosed with young-onset Parkinson’s in 2008, I was shocked but also relieved to finally know what was happening to me. But I didn’t know anything about Parkinson’s, and it was a steep learning curve. I started the Brian Grant Foundation in 2010 to support research, but became increasingly frustrated that nobody could tell me how to live with the disease. As a professional athlete, I have been able to train my body to compete at the highest level. But with Parkinson’s, I had to accept that this was a disease that I was going to have to learn to live with and not let it define me. I started talking to other people with the disease and learned from others about what they were doing to live with Parkinson’s. The people I talked to believe that regular exercise and a healthy diet were among the most important ways to live a good life with Parkinson’s, and that resonated with me as a professional athlete. Tell us more about your foundation and its key initiatives. The Brian Grant Foundation provides tools to improve the 10 • FUTUREOFPERSONALHEALTH.COM
well-being of people with Parkinson’s. Our programs focus on exercise and nutrition to help manage symptoms and improve quality of life. We work with medical experts to understand how different types of activities and nutrients can help manage and potentially slow down Parkinson’s symptoms. How can patients and their families adopt a healthier lifestyle in light of a PD diagnosis? Teamwork is the key to a healthier lifestyle with Parkinson’s. When you’re diagnosed with this disease, your family, friends, providers, and community are your teammates. Like any team, working together requires communication, and that can be hard when you first get diagnosed with Parkinson’s. I realized that if I didn’t tell people what I needed, then they couldn’t help me on my path to a healthier lifestyle. What advancements in Parkinson’s research, treatment, and advocacy efforts in general are you most excited about? I’m really excited about what we’re learning about the ability of exercise to manage Parkinson’s symptoms and improve brain function. When I was first diagnosed in 2008, people weren’t really talking about the benefits of exercise for Parkinson’s. Today, I think most people agree that if there’s one thing that people with Parkinson’s should be doing to help manage their disease, it’s exercise. n
PHOTO: THE BRIAN GRANT FOUNDATION
Brian Grant, retired NBA player, discusses life after a Parkinson’s diagnosis and how his foundation is fighting to help people live better with the disease through nutrition and exercise.
MEDIAPLANET
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You have dopa decarboxylase (DDC) covered, but there’s another enzyme interfering with levodopa (L-dopa) reaching the brain—and that’s catechol-O-methyltransferase (COMT).
Explore how the COMT enzyme impacts L-dopa’s journey to the brain.1-5
When the DDC enzyme is inhibited, COMT enzyme activity can increase, metabolizing even more L-dopa. 1-4 And it
→ COMTenzyme.com/Journal
doesn’t stop there. References: 1. Männistö PT, Kaakkola S. Catechol-O-methyltransferase (COMT): biochemistry, molecular biology, pharmacology, and clinical efficacy of the new selective COMT inhibitors. Pharmacol Rev. 1999;51(4):593-628. 2. Reilly DK, Rivera-Calimlim L, Van Dyke D. Catechol-O-methyltransferase activity: a determinant of levodopa response. Clin Pharmacol Ther. 1980;28(2):278-286. 3. Rivera-Calimlim L, Tandon D, Anderson F, Joynt R. The clinical picture and plasma levodopa metabolite profile of parkinsonian nonresponders. Treatment with levodopa and decarboxylase inhibitor. Arch Neurol. 1977;34(4):228-232. 4. Dingemanse J, Kleinbloesem CH, Zürcher G, Wood ND, Crevoisier C. Pharmacodynamics of benserazide assessed by its effects on endogenous and exogenous levodopa pharmacokinetics. Br J Clin Pharmacol. 1997;44(1): 41-48. 5. Wade LA, Katzman R. 3-O-methyldopa uptake and inhibition of L-dopa at the blood-brain barrier. Life Sci. 1975;17(1):131-136.
©2019 Neurocrine Biosciences, Inc. All Rights Reserved. CP-PD-US-0002 10/19
Celebrating Purple Day® to Raise Epilepsy Awareness
One in 10 people will have a seizure in a lifetime, and most people do not know how to help them. But education reduces fear. The Anita Kaufmann Foundation, whose sole mission is to educate the public to not fear epilepsy, has produced seizure first aid material that it sends out for free all over the world. Purple Day® The largest grassroots epilepsy awareness initiative in the world is called Purple Day®, which is on March 26 every year. Purple Day® was started 11 years ago by nine-year-old Cassidy Megan, who felt alone because everyone was afraid of her seizures and wouldn’t invite her to sleepovers. Cassidy wanted there to be one day when everyone with epilepsy would not feel alone. Purple is the internationally recognized color of epilepsy. Purple Day® is celebrated by millions around the globe in over 120 countries because people with epilepsy related to Cassidy’s struggles. As the global sponsor of Purple Day®, the Anita Kaufmann Foundation sends Purple Day® material all over the world. Epilepsy awareness The Anita Kaufmann Foundation has broadened The Purple Day® Campaign by encouraging people to celebrate Purple Day® every day. Epilepsy awareness is important 365 days per year. Epilepsy advocates are encouraged to educate their community about seizure first aid and epilepsy every day in order to make this a kinder world for people with epilepsy. To learn more, visit purpleday.org. The Anita Kaufmann Foundation 12 • FUTUREOFPERSONALHEALTH.COM
PHOTO: COURTESY OF AMERICAN PARKINSON DISEASE ASSOCIATION
Purple Day® was founded by a nine-yearold with epilepsy to help others with the same condition feel less alone.
How “American Ninja Warrior” Contestant Allison Toepperwein Fights Back Against Parkinson’s Disease Allison Toepperwein was diagnosed with Parkinson’s disease when she was 37. Many people would struggle facing that diagnosis, but she didn’t let it get her down.
Once I was diagnosed with Parkinson’s, I began to really live,” she says. “I realize that tomorrow is not promised for any of us.” Toepperwein was diagnosed on Dec. 31, 2014. In the months prior, she had separated from her husband and started divorce proceedings, sold her home, and moved back in with her father. That night she tucked her then four-year-old daughter into bed and said, “This is not how my story is going to end!” Documenting the journey Four days later, she started her blog, LitWithin.com, where she chronicles her Parkinson’s journey. Two months after that, she started exercising as part of her doctor-approved treatment to beat the progression of the progressive nervous system disorder. “The biggest positive changes that I’ve made to my life as a whole have
been exercise, and to believe that there is nothing in this world that I can’t do,” says Toepperwein, who blogs for the Huffington Post. No limits Toepperwein knew exercise would help her manage her Parkinson’s symptoms, so she gave it her all and ultimately entered the “American Ninja Warrior” competition. Now a two-time “American Ninja Warrior,” she encourages other people with Parkinson’s to exercise and be empowered. “If you can start moving, you’re already 10 steps ahead of anyone else,” says Toepperwein, whose blog led her to start a nonprofit called Lit Within, Inc., which helps women find their light within. Her diagnosis gave her new inspiration. “Now if I want to do something, I do it. That includes having no limits in life,” she says. n Kristen Castillo MEDIAPLANET
The Promise of a Drug-Free Migraine Alternative Treatment People with migraine have new drugfree treatment options with minimal side effects, thanks to the burgeoning partnership between the medical and technological communities. As we enter a new decade, doctors and patients are increasingly turning to tech solutions to diagnose and treat diseases. A prime example of this new approach is in the treatment of migraine, a chronic disease that affects more than 38 million people in the United States alone. New drug-free migraine treatment solutions have now been developed using neuromodulation. Neuromodulation utilizes electrical or magnetic impulses to modulate nerve activity in order to relieve the pain and associated symptoms of migraine. There are different neuromodulation devices including vagal nerve stimulation, transcutaneous magnetic stimulation, and TENS units. They can be placed on the head, face, or neck. New treatments A new FDA-approved neuromodulation device, Theranica’s Nerivio™, received a great amount of attention after being named one of TIME’s 100 Best Inventions of 2019. Worn on the arm, it uses remote electrical neuromodulation to activate the pain control system. It was found in clinical studies to be as effective as traditional pharmaceutical options with fewer side effects. Nerivio™ is both a first line and a complementary treatment for migraine headache. This new drug-free approach to migraine treatment is just one example of the power of the medical and technology communities to create new solutions for old problems. This is bringing new, unique treatment options to patients, physicians, and healthcare systems. This piece has been paid for by Theranica. Dr. Stephen Silberstein, Professor of Neurology, Thomas Jefferson University; Director, Jefferson Headache Center at Thomas Jefferson University Hospital 14 • FUTUREOFPERSONALHEALTH.COM
5 Things You Can Do To Manage Migraine at Work
Migraine in the workplace is an issue affecting millions of Americans each year. In fact, 157 million workdays in the United States are lost annually as a result.
M
igraine can be managed in the workplace. Check out the tips below to learn how. 1. Talk to your supervisor Discussing migraine with your supervisor is the first step to reasonable accommodations. For best results, schedule the meeting in advance and frame the discussion around how reducing workplace triggers will benefit your performance and productivity. If you need extra support, involve your physician or lean on migraine resources. 2. Address harsh lighting Bright, fluorescent, and flickering lights can trigger or exacerbate migraine attacks. Soften the glare by replacing fluorescent lights or applying a filter to reduce their intensity. Additionally, the blue light emitted by computer screens may also contribute
to migraine attacks — try adding a screen filter that helps block blue light. 3. Reduce scent and sound Loud noises and strong scents like soap and perfume are two of the most common triggers for migraine. Ask employers to consider a no scent policy and to relocate you from a high-traffic area to somewhere more secluded, such as the end of a row of cubicles. 4. Request a recovery space Being able to rest in a quiet and dark space can help the resolution of symptoms and recovery from an attack. It may also provide a discreet and private space to administer certain treatments. Speak with your employer about establishing a comfortable place you can go to help manage migraine attacks. 5. Educate your colleagues Kindness goes a long way
whether you’re dealing with bothersome triggers, missed work days, or coworkers adjusting to your accommodations. Talking with your colleagues about migraine and sharing educational material lets them know what you’re going through and how they can help make the workplace a more manageable place when living with migraine. Simple accommodations could drastically benefit your work experience. As you begin conversations about migraine in your workplace, the American Migraine Foundation encourages you to seek out doctor-verified resources at americanmigrainefoundation.org to help educate your colleagues about this disabling disease. n David Dodick, M.D., FAHS, Professor of Neurology, Mayo Clinic in Arizona; Chairman, American Migraine Foundation MEDIAPLANET
Meet Your MAX
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