Managing Stress - Community Magazine, Fall 2015 by Caring Voice Coalition

Volume 4 • Issue 3 • Fall 2015 • The Quarterly Publication of Caring Voice Coalition, Inc.

COMMUNITY

Coping tips to relieve stress

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How to make eating right stress-free

PLUS Detailing health insurance open enrollment Living with Lennox-Gastaut syndrome Voicing awareness of sarcoidosis ... and more!

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Lifting the cloud of depression

What legacy will you leave? By taking the simple step of making a provision in your will or living trust today, you can create a legacy of giving that will have a tremendous impact tomorrow on future generations who will need financial assistance and support for their chronic illnesses.

For information on how you can impact the future of Caring Voice Coalition and the patients it serves through a legacy commitment, please contact: Rebecca App, Director of Finance 888-267-1440 ext. 106 financedept@caringvoice.org Your donations are fully deductible for estate tax purposes.

Contents

Community Fall 2015 18

4 Contributors’ Page

12 In Your Words:

6 Vice President’s Letter

7 Readers’ Comments 9 CVC Close Up

For CVC Program Manager Lauren Ruiz, being an advocate for patients isn’t just a priority, it’s a passion.

10 Defining The New Normal

The last of a four-part series, certified educator and health coach Colleen Brunetti offers patients a formula for successful, healthy living.

Dorothea Howard has lived with sarcoidosis for 31 years. She uses her experiences to educate others, most notably by hosting a talk show that focuses on the rare disease.

24 Lifting the Cloud of Depression Dr. Robert Mayfield reviews the signs of depression and explains how prompt attention will help ease the severity of symptoms.

14 Patient Association Profile

Foundation for Sarcoidosis Research (FSR) Executive Director Ginger Spitzer explains the organization’s goals and services.

Managing Stress

Community explores ways that you can manage stress through multiple techniques.

Voicing Awareness

5 Editor’s Letter

26 Newsmaker Q & A Registered Dietitian and Academy of Nutrition and Dietetics spokesperson Tamara Melton discusses the importance of proper nutrition and how to achieve a healthy diet.

At a Glance

Spotlighting narcolepsy, a sleep disorder that affects an estimated 1 in every 2,000 people in the United States.

Fall Recipes

Registered dietitians share four delicious healthy recipes for tasty fall fare.

34 Insuring Your Health

CVC Program Manager Lauren Ruiz provides details and deadlines for health insurance open enrollment.

36 In Your Words: Outshining LGS

Julie Neal hopes her daughter Bailey’s life story with Lennox-Gastaut syndrome will shed light on this severe form of childhood-onset epilepsy.

28 Eat Cleaner

Chef Mareya Ibrahim, also known as “The Fit Foodie,” provides tips on how to make eating right a stress-free event. Staff

Publishers

Pamela Harris pharris@caringvoice.org Samantha Green sgreen@caringvoice.org Advertising Disclaimer Any references to products, services or health care providers in this magazine are not a recommendation or endorsement of products, services or providers.

Publishing Editor Robin Lawson 888.267.1440, ext. 188 rlawson@caringvoice.org

Medical Disclaimer The information provided in Caring Voice Community is not a substitute for professional medical advice or care.

Director of Communications Jennifer Previtera 888.267.1440, ext. 141 jprevitera@caringvoice.org

Graphic Design Renita Wade rwade@caringvoice.org

Charlie O'Donnell codonnell@caringvoice.org

Please recycle this issue.

Contributors

Colleen Brunetti Colleen Brunetti is a certified educator and health coach. Diagnosed in 2008 with pulmonary hypertension, Brunetti also works as a patient advocate and in 2014 wrote her first book, Defining Your New Normal: A Guide to Becoming More Than Your Diagnosis.

Dorothea Howard Dorothea Howard has lived with sarcoidosis for 31 years. As a patient advocate, she hosts support group meetings and health conferences, as well as an award-winning local talk show, Let’s Talk Sarcoidosis, in an effort to inspire and inform.

Chef Mareya Ibrahim Mareya Ibrahim, also known as “The Fit Foodie,” is a nationally recognized food safety and clean eating expert, an award-winning entrepreneur, television chef, author and inventor. She is the CEO and founder of Grow Green Industries.

Robert Mayfield, M.D. Robert E. Mayfield, M.D. maintained an active family medical practice for 15 years. He now oversees CVC’s Department of Medical Affairs and Compliance, providing strategic medical advice and counsel on new disease funds prior to program implementation.

Tamara S. Melton, MS, RDN, LD Tamara Melton is a registered dietitian nutritionist and spokesperson for the Academy of Nutrition and Dietetics — the world’s largest organization of food and nutrition professionals.

Julie Neal As the mother of a child with Lennox-Gastaut syndrome (LGS), Julie Neal knows the importance of support and understanding. She hopes her daughter Bailey’s story will encourage others to learn more about this severe form of childhood-onset epilepsy.

Lauren Ruiz Lauren Ruiz is a program manager in CVC’s patient services department and helps oversee the alternate coverage and premium assistance departments. Ruiz became a Marketplace certified application counselor in 2013.

Jessica Scalin Jessica Scalin is a lifestyle and meditation coach, a lululemon ambassador, and one of the top yoga instructors on the East Coast. She has a pre-med degree and an athletic background giving her extensive knowledge of anatomy and physiology.

Do you have a story you'd like to share? Your words can make a difference.

Email us: magazine@caringvoice.org Call us: 888-267-1440

Ginger Spitzer Having a family member with sarcoidosis inspired Ginger Spitzer’s career with the Foundation for Sarcoidosis Research (FSR). As executive director of the FSR, Spitzer recognizes engaging the patient is critical to the researchadvancement mission.

Jennifer Stack Jennifer Stack is an associate professor of Culinary Science at the Culinary Institute of America (CIA), in Hyde Park, New York. A registered dietitian nutritionist, certified diabetes educator, and professionally trained chef, Stack is a 2003 CIA graduate.

Attributions

Cover photo by

Photo page 18 by Dingzeyu Li

Illustrations page 17 by

Illustrations page 23 by

Charlie O’Donnell

www.freepic.com, www.flaticon.com

Charlie O’Donnell

caringvoice.org • Fall 2015 • Managing Stress

Editor’s Letter

A positive perspective

’ve been known to “borrow trouble” as my grandma would say. I think it’s a hereditary trait as the women in my family have an uncanny knack for taking something that’s worrying and transforming it into something especially worrying. I’ve watched us open the door for stress and then wonder how on earth it got in. Sound familiar? I’m sure we’re not the only ones who have spent too much time thinking about what tomorrow might bring instead of enjoying and finding gratitude in the delights of today, no matter how small they may seem. The reality is, challenges aren’t going to stop. There will be bills to pay, a family to care for, a home to manage, a job to do. There will be needs and wants, and anxieties and fears. And that’s just in an ordinary day. Add a major life event, like an illness, and the stress keeps piling up. In my time as editor I’ve learned a great deal from the people I have interviewed who are living with chronic and often life-threatening illnesses. I continue to be amazed by the strength, optimism, and will of those like Dorothea Howard (page 12), who focuses her energies and 31 years of living with sarcoidosis into educating and supporting others. I continue to be awed by the caregivers like Julie Neal (page 36), who, despite her family’s multiple daily demands, finds joy and meaning in her life as a mother to a child with Lennox-Gastaut syndrome. While we can’t control all of our circumstances, we can control how we respond to them. We can reframe our perspective to find purpose in a difficult situation. There’s power in positive thinking. Knowing how the mind and body are so intricately intertwined, we can make a conscious decision to create an environment and an attitude that foster healthier days. Use simple techniques like the ones we’ve gathered on pages 18-22 to manage stress when it starts moving in. The key is to recognize when you need them and find the wherewithal to apply them. And always remember, if you feel you need additional assistance, talk to your family, friends, or physician and get the help you deserve. By building a reserve of coping resources to handle life’s inevitable stressors, you’ll have a clearer focus of what you enjoy and appreciate in life.

Worry does not empty tomorrow of its sorrow, it empties today of its strength. — Corrie Ten Boom

control all of our circumstances, we can control how we respond to them.

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COMING Winter 2015 IN YOUR WORDS SPECIAL EDITION: Patient Insights

Send us your stories! We want to hear from you! Write to us: 8249 Meadowbridge Road Mechanicsville, Virginia 23116

Robin Lawson

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Email us: magazine@caringvoice.org Call us: 888-267-1440 5

Vice President’s Letter

You’re not alone

ur lives are full of daily demands and we’re all prone to feel stress at one point or another. After all, it’s our body’s natural way of responding to a change or challenge.

As you’ll learn in this issue, not all stress is bad. It helps motivate us to conquer fears, reach a goal, and avoid dangers. But too much stress can leave you in a constant state of tension and anxiety and lead to serious health problems.

“ ...stress too often becomes the norm and you forget what you enjoy about life.

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Living with a chronic illness, and caring for a person with a chronic illness, isn’t easy. In addition to life’s everyday pressures you’re also forced to deal with the unrelenting strains of the illness itself. As a result, stress too often becomes the norm and you forget what you enjoy about life. It’s important to recognize the symptoms of stress before it impacts your health. Maybe you experience headaches, have problems sleeping, or feel muscle stiffness. Everyone reacts to stress differently. By listening to your body and becoming aware of the warning signs, you can learn to manage stress and give yourself the opportunity to reset and recharge, and that’s something we don’t do enough. Understand your limits and make time for you. Taking steps to improve your emotional and physical health, like eating a nutritious diet, going for a walk, spending time with family and friends, and doing one activity each day that you enjoy will help you prepare and better cope with stressors when they come your way. Here at CVC we take a holistic approach in our concern for your total well-being. We understand that when you or someone you care about has a chronic illness it can be stressful not knowing where to turn for support. Having a strong support system is vital and we want you to know that you’re not alone. We’re here to help.

Samantha Green

caringvoice.org • Fall 2015 • Managing Stress

Readers’ Comments

We're Listening! Loved the summer issue of Community

I loved the summer issue of Community. About six years ago I was diagnosed with mild pulmonary hypertension (induced by exercise). The reason I loved the last issue is because along with my medication, I started meditating three years ago, then added yoga postures the last two years. These things have dramatically increased my quality of life. Before meditation and yoga, I believe fear kicked in and gave me more symptoms. Learning to breathe (completely emptying my lungs; I didn’t know how to do this before meditation) changed my life. It made it possible for me to add yoga postures, cardio and even a little jogging. Learning how to calm the breath and the mind is vital to health and wellbeing. The summer issue explains that beautifully. In January I also started visiting a nutritionist, changed my diet completely, and now have more energy and less palpitations and dizziness. The way you highlight the importance of a healthy diet is perfect. I love the recipes as well. Such a positive, uplifting and engaging read. Danielle Aguirre New York

Courage to try Thank you so much for the article in the summer issue of Community by Colleen Brunetti. I have been afraid

to try any exercise. That was my first issue of the magazine. I devoured it. I have some hard decisions to make in regard to my health. I CAN DO THIS. You have given me the courage to try. Thank you for everything. Ruth Bergsing Montana

Feel like a “normal” person No words are enough to thank you, CVC. If it weren’t for your help I would not feel like a “normal” person. There is no way I could get my medication. I also want to thank you for your magazine, Community. I look forward to it every quarter. I have learned so much. The articles about narcolepsy, as well as other diseases, are informative and interesting. My friends and family like to read it too. I will continue to support and ask many others to support CVC as one of their charities. Donna Grogan North Carolina

A different life now Shortly before my 83rd birthday, I was diagnosed with pulmonary hypertension. I felt so helpless. I could not afford the medicine. CVC has been most helpful in getting me financial assistance. My life is so different now. I live right next to the little church that I attend, and was having to drive, but now I can walk to church. Also,

I have no trouble walking around the grocery store or doing other activities that I had to give up. I thank you, CVC, with all my heart for helping give my life back to me! I also thank the Lord for you and for His help. June Stephenson Alabama

Peace of mind In early 2013, I lost my 66–year-old husband after a five-year struggle with Alzheimer’s disease. One month later, I awoke in the middle of the night and couldn’t breathe. After months of testing, I was finally diagnosed with pulmonary arterial hypertension and CVC came to my rescue. Needless to say, I’m still struggling with all that’s been laid on my plate, but with your help, I am surviving. Thank you for all the help and kindness you have given to me, and so many others with diseases that require such expensive medications. With the world the way it is today, you above all have brought some hopefulness and peace of mind to my life. Susan Sukovich Wisconsin

CONTACT We want to hear from you! Write to us: 8249 Meadowbridge Road Mechanicsville, Virginia 23116 Email us: magazine@caringvoice.org Call us: 888-267-1440 7

Help support CVC’s Community Donate or subscribe today!

At Caring Voice Coalition we’re dedicated to supporting those living with chronic illness and their caregivers. With our quarterly Community magazine you’ll find that support through health care articles and patient profiles that continue to inform and inspire long after they’re read. By donating or subscribing you can help keep Community circulating. Make a tax-deductible donation of your choice by mailing a check payable to Caring Voice Coalition, or subscribe to Community for just $10 a year and have it delivered straight to your doorstep.

Please make checks payable to: Caring Voice Coalition, Inc. 8249 Meadowbridge Road Mechanicsville, VA 23116 Donate or subscribe by using the enclosed envelope or visit us online at www.caringvoice.org.

Close Up:

Lauren Ruiz Program Manager

elping people in the now, with their immediate needs, is important. Working here made me realize that. I started at Caring Voice Coalition (CVC) nearly four years ago after graduating from Virginia Tech with degrees in political science, mass communications, and English. My goal was to get my master’s degree in public health and public policy. I wanted to be a lobbyist for patient advocacy issues in Congress. I believe that every unexpected turn in my life happened so that I would find myself just where I am now. I’m still an advocate, just not in the political landscape. I get to help patients get the medical insurance they need, and therefore the doctors and medications they need, to care for their disease and have a better quality of life.

under the Affordable Care Act (ACA). That’s been great because we can directly assist patients in filling out the application, review plans and help them enroll. It makes it a lot easier on the patient to go through that process with us and then be referred internally for financial assistance. They get the whole package in one stop. I love helping the patients and getting to know them, but I also really enjoy seeing the employees that I supervise develop and learn. Being able to cross-train someone in multiple departments and see them succeed is always rewarding. I like helping people, so giving someone else the tools to be able to help others is a plus. I want to make sure that our patients have the best representatives available to assist them, and I want to give patients the tools they need to comfortably oversee their insurance on their own should the need arise. We want to help them overall.

“I want to make sure that our patients have the best representatives available to assist them.”

In college I was diagnosed with an unspecified seizure disorder. After working here for a while and talking to patients, especially parents of children who have seizure disorders, it helped me open up more about my own experiences. I think it has helped me relate to our patients. I also believe the lessons my parents instilled in me shaped me so that I would be a perfect match for this organization. I’m now a program manager in CVC’s patient services department, and I have a specific role in overseeing our alternate coverage and premium assistance departments where we help patients enroll for coverage and better understand their insurance benefits. Two years ago I helped CVC become a Certified Application Counselor Designated Organization (CDO) for Marketplace services

Since I’ve been here we’ve doubled the disease states we support and we’ve extended our reach. People know of us because of our advocacy work, because of Community magazine, because of our alternate coverage and disability programs; it’s those extra services that we offer that set us apart. I think we’re able to manage them all really well because we hold on to that high-touch patient experience. I want patients to know that we are always here for them. It’s okay to ask for help; you don’t have to carry everything on your own shoulders alone. Even if we’re not able to resolve something right away, we will continue to try to find the answer. When one door closes, another door somewhere will open; you just have to find it. See Lauren Ruiz’s article on health insurance open enrollment, pg. 34 9

Defining The New Normal:

Stress Less, Feel Better This column is the last of a four-part series by Colleen Brunetti, M.Ed., C.H.C., based on her book, Defining The New Normal: A Guide to Becoming More Than Your Diagnosis

constant sensory input of technology keeps many of us in an elevated state of stress almost constantly. Add in a major diagnosis, or caring for someone who has one, and it’s no wonder if you feel a little too tightly wound.

This constant stress response is detrimental to our health. For some, it can heighten the symptoms of their diagnosis. For others, it can just wear away in such a manner that coping with the day-to-day of managing a critical illness becomes even more challenging. In short, it is incredibly important to get a handle on that stress response!

truly believe that to live with a major diagnosis and learn to thrive, you must not only attend to your immediate medical needs but take incredibly good care of yourself in all other ways, too. However, when you are diagnosed with a major illness, everything changes. Your ability to eat right, exercise, and get enough rest suddenly becomes not just important in the everyday sense, but critical to your well-being. Ironically, of course, these things also can seem much more challenging as you learn to navigate a diagnosis. And that can be stressful! Managing both everyday stress and the stress that comes from being sick is critical to your well-being. To understand stress, we have to go back to our days as cavemen and Your ability to eat women! Stress is really the “fight or right, exercise, flight” mechanism and get enough that allowed our rest suddenly ancestors to either becomes not just grab their spear and fight off the saberimportant in the toothed tiger (fight) everyday sense, or get out of there as fast as possible but critical to and find a new cave your well-being. (flight). When the fight or flight response is initiated, your body reacts with a quickened pulse, faster breathing and a rush of the hormone cortisol. The fight or flight response of stress is in fact a very healthy thing for survival – for short periods of time.

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But we’re not under a major diagnosis for a short period of time. In addition, the stress level of Americans is very high in general. Our go-go-go society coupled with the 10

caringvoice.org • Fall 2015 • Managing Stress

The best way to do this is to integrate simple daily routines that are aimed at reducing stress and encouraging relaxation. Here are a few of my favorites:

Breathe:

Spending just a few minutes a day breathing mindfully is very powerful. Focus on inhaling through the nose and out through the mouth. Your belly should expand on inhale and deflate on exhale. Try 10 deep breaths. As you go, you may feel your shoulders relax and your energy may even increase because of the extra oxygen coursing through your system.

2. Meditate:

An extension of breathing is meditation. Meditation can take on many forms, from the deeply spiritual practices of different religions to a more informal time of rest and quiet. You can choose to practice meditation in whatever way works for you. Find a comfortable place to sit or lie down. Breathe slowly and deeply and try to just clear your mind. Thoughts will come bubbling up to the surface, and that’s totally normal. Just acknowledge they are there and return your attention to the sound and feel of your breathing. Start with 2-3 minutes a day and work your way up to 10 or more. Don’t worry if you fall asleep! Rest is good for stress, too.

Defining The New Normal

Laugh:

Laughter really is the best medicine! Watch a funny movie, read a comical book, or binge watch your favorite comedy series on Netflix. Among the many benefits of laughter, you may experience lower blood pressure, a higher immune system, an increase in endorphins, and of course a better mood!

Move and Groove:

Some sort of daily movement is important, at whatever level you can do. Take a gentle walk, swim, or explore classes like chair yoga or Qigong, which can be easily modified for any activity level. Choose exercises that relax the body and leave you feeling refreshed.

Connect:

patients. You might also talk with your doctor about a referral for counseling. Talking through the emotions and challenges that come with a diagnosis can really help alleviate the stress you are experiencing. Stress is our body’s way of giving us a message. At the most basic level, it is saying, “Something has to change.” Remember, fight or flight. We can’t flee a diagnosis. But we can fight it a great deal in how we respond. Being proactive about how we manage our stress is one key to better health! Defining The New Normal: A Guide to Becoming More Than Your Diagnosis is available in print on amazon.com and on all major digital readers.

It is so important to talk with someone about your journey. If you are experiencing stress around a diagnosis, make an effort to connect to other

Visit www.definingthenewnormal.com to learn more.

Read our newsletter Have the latest health news, lifestyle tips, and inspiring stories sent to your email for free! Subscribe to the CVC-e monthly newsletter at www.caringvoice.org. 11

Voicing awareness Having lived with sarcoidosis for 31 years, talk show host Dorothea Howard uses her experiences to help others.

n 1984, when I was 26 years old, I started feeling short of breath, fatigued, had constant body aches and a dry, persistent cough. I thought I had the flu. After a month or so I noticed the dry cough wasn’t going away and it dawned on me how much weight I had lost. It was drastic. That’s what prompted me to go to a doctor. I just didn’t feel right. Following a chest X-ray, I was admitted to the hospital. The doctor said my symptoms were pointing to lymphoma or tuberculosis. I remember crying for the next five days because I thought I had cancer. The doctors ran more tests and finally one of the physicians suggested a biopsy of my lymph nodes. I was terrified. When the pathology results came back, the doctor told me the good news was that I didn’t have lymphoma, but the bad news was that I had sarcoidosis and there’s no cure. Back then very little information existed about the disease. All doctors knew to do was prescribe high dosages 12

of medication to treat the inflammation. At that time, my liver and my spleen were double their normal size. I was really ill. Over time my spleen and liver returned to normal, but my lungs were, and still are, scarred badly. As the years went on my body went in and out of remission. At times I had major flare-ups. In 1987 I was seven months pregnant with my second daughter and my left lung collapsed. The procedure to correct it was frightening and painful. Doctors worried I might have to have emergency surgery to deliver my baby early, but through the grace of God we came out of it fine. I had a normal delivery and my daughter will be 28 years old in November. In 2004 it happened again; my right lung collapsed. I was driving one day and I felt this pressure in my chest. I didn’t know what was going on. When I got home I laid down to rest and the minute I put my head on the pillow it felt like my breath was cutting off; that’s when I knew what was happening and went to the hospital.

caringvoice.org • Fall 2015 • Managing Stress

My blood pressure was at stroke level. Doctors inflated my lung and I went through the whole process again. Around 2006 I realized I wanted to help other people with sarcoidosis. I wanted to make sure no one had to go through what I went through — especially not having anyone to talk to about the illness and understand. I felt others needed to be educated about the disease; they needed a voice — a patient’s voice. So, I quickly became an advocate for sarcoidosis. I feel that God uses my experiences and my voice to help people. I have always believed in being positive, that’s what has gotten me through my struggles with the disease. I want to be that voice to remind people that you have to change the way you think in order to cope with anything, whether it’s an illness, or something else. I started hosting conferences that included sarcoidosis information and I started a support group, often talking to people over the phone if they couldn’t attend meetings in person.

In Your Words People learn a lot from hearing about other people’s experiences and sharing information. In 2011 I also wrote a book about my experiences. I have been through a lot of pain with this illness, but I’ve still managed to cope with it and come out with a positive mindset. A few years later I pitched the idea for a talk show, “Let’s Talk Sarcoidosis,” to a local television network. I wanted to bring on medical professionals and people living with the disease to help educate the community and viewers all over the world. In May I was named “Best New Talk Show Host” by Bowie Community Media Corporation. When I won the award it really confirmed that the show was needed. I felt the gratification. It airs in Prince George’s County, Maryland and parts of Washington, D.C., but we also share it on YouTube. My main goal is to teach people to be proactive in their own health care. I know that I live with a potentially fatal illness, and I wake up every morning praying. Some people pray for all kinds of things, but I pray for breath, literally. I make sure that I exercise three to four times a week, whether it’s walking or resistance training, and I eat properly. I am very proactive in my own health. I choose to accept what I have and go out there and make a difference. So when I wake up in the morning, I ask myself, “What can I do today to make me a better person and to help someone else?” That’s my attitude. I stay positive. I recently became a grandmother for the first time so when I look in my granddaughter’s face, I know I need to stay healthy. She’s my inspiration. It reminds me that no day is promised

and I have to contribute to my own well-being. Everyone, especially people with a chronic illness, should try to be in positive environments. Anyone or anything that’s going to give me negative energy, I don’t want to be around it. I’ve learned that the hard way.

help themselves. Why complain? Be grateful and thankful that you’re alive because some people didn’t wake up this morning. Change the way you think about life. Attitude has a lot to do with it. I can mope and be stressed and sick, or I can do something nice. I choose to do something nice.

Left: Dorothea Howard in the studio taping an episode of “Let’s Talk Sarcoidosis.” Right: Hosting a health care conference.

I can feel my body respond negatively to stress and negative situations, and I don’t apologize for wanting to live a healthy lifestyle. Clinically, on paper, my pulmonary tests aren’t the greatest. I struggle when it’s humid outside or extremely cold; it causes shortness of breath. I still have my struggles, and I have days when my entire body aches, but because I’m in tune with my body, I don’t overexert myself. I’ve learned how to cope. My advice for those who are newly diagnosed is to breathe. Take deep breaths; use a breathing exercise. You have to tune into your body. Then think to yourself: “So I have this disease, now what? What will I do about it?” Once those questions are answered, people start to realize they need to

My experiences with sarcoidosis have taught me to be more caring; to be empathetic and sympathetic to others and really listen. Sometimes that’s all it takes to help another person. It’s important to be heard. In the 31 years I have been battling this illness, I’ve been through a lot, but it helps me to help others. It keeps me going. Watch episodes of Howard’s talk show, “Let’s Talk Sarcoidosis,” on YouTube: http://bit.ly/sarcoidosistalk For more information on the sarcoidosis group meetings and health care conferences hosted by Howard, email info@mcguireglobalrecruitment.com 13

Foundation for Sarcoidosis Research (FSR) Ginger Spitzer, FSR Executive Director

How and when did the Foundation for Sarcoidosis Research (FSR) begin? The Foundation for Sarcoidosis Research began in 1999 as a grassroots organization. It was started by co-founders Andrea and Reading Wilson with a dedication to make a difference. Diagnosed in 1994 with multi-organ sarcoidosis, Andrea Wilson was shocked by the lack of knowledge and information about this disease. She and her husband Reading began their journey to build a nonprofit that would accelerate research toward new therapies and ultimately a cure. Throughout her illness, which included everything from a heart attack and two strokes to the many treatments she has endured, she made a commitment that she would work to help others battling this often overlooked disease.

What are the goals of the FSR? The FSR mission is dual-focused, with comprehensive education and outreach efforts to patients and physicians, as well as major investments and collaborations to move the needle forward in sarcoidosis research and treatment development. We are continually collaborating and communicating with the biopharma industry as well as health care providers to identify treatment options for patients. Through FSR’s collaborative efforts, we are hoping to bring new therapies to market soon. We encourage our patients to visit our website at www.stopsarcoidosis.org for ongoing information on current therapies available.

counters the traditional establishment. Our goal is to have promising therapies move quickly from the laboratory to the patient, and we do so through collaborations and strategic funding. Our strategic research agenda identifies those major gaps in the field that, once addressed, will allow for transformational progress in new drug development and repurposing.

What services and programs does the FSR offer? Informed and engaged patients are critical to breakthroughs in disease research. We focus our efforts on educating patients on understanding the fundamental value they bring to clinical research, and connecting patients to the many opportunities to be key participants in the sarcoidosis research field. By involving patients directly in medical breakthroughs, we hope to unlock key research findings. The FSR Patient Resource Education Program (PREP) provides a specialized service to sarcoidosis patients. Through the following programs, FSR educates and informs patients, physicians, and other stakeholders:

Patient Registry – a longitudinal web-based patient registry including ongoing history, medical reports, diagnostics, and treatment information. This anonymous data helps researchers further understand the disease, treatment options, diagnostic capabilities, etc.

What is most important for people to know about sarcoidosis and the research that’s being done?

Sarcoidosis is truly a “mystery disease” – very little answers or help exists for the thousands of patients in the U.S. alone. The field of sarcoidosis research is barren – almost zero funding, very few researchers, and minimal knowledge or even motivation exist. The Foundation for Sarcoidosis Research is leading the charge to change this dismal situation. FSR embraces a new model of medical research support that

Clinical Trial Interest Indicator – enables patients to indicate clinical trial interest and maps where potential patients are located for researchers.

Clinical Trial Connector – lists open trials recruiting patients; provides links for applications for inclusion.

Patient Network Center – connects patients via the internet, phone, and in-person for networking and knowledge-sharing. Coming soon!

caringvoice.org • Fall 2015 • Managing Stress

Patient Association Profile 5.

Treatment Protocol – a mobile app as well as a printable, web-based tool presenting treatment guidelines developed by physicians.

What are some of the things you do for the FSR? How and why did you become involved?

Physicians Directory – connects patients to physicians all over the globe.

Support Group Directory – identifies formal support groups around the world.

Patient Advocacy and Education Materials – core of the PREP program. This provides diseasespecific information about sarcoidosis, providing knowledge to patients and increasing awareness and support.

As a family member of someone with sarcoidosis, I found FSR by researching resources, and was lucky to also soon find a career in something I very much believe in. I have been here for almost three years and count on a strong team who has helped me with our progress. As Executive Director, I am committed to the patient-centric approach that recognizes engaging the patient is critical to the researchadvancement mission.

Patient Conferences and Workshops – launched through collaborations and connections with medical providers, educational institutes, industry, patient groups, etc.

10.

Treatment Options – a list of commonly used drugs to treat sarcoidosis.

In additional work, FSR has also created the Physicians Outreach Program. One of the biggest challenges for patients is when their own doctors don’t have the information or answers that can best help them. This initiative does frequent outreach to thousands of physicians globally to share updates on sarcoidosis and treatment options. FSR also made progress in addressing a major gap in sarcoidosis research – the lack of information about the disease from patients which illustrates the “epidemiology” of the disease. Our patient registry collects information from thousands of patients to share with researchers for a better understanding of sarcoidosis. Our FSR Clinical Studies Network brings worldwide sites together for multipartner studies and trials. And finally, FSR has connected with companies and physicians regarding current drugs being prescribed to patients and will share the measured results soon!

What are some of the services that you feel are most needed among sarcoidosis families and patients? Our patients are desperate for answers – there is currently no cure for sarcoidosis. The few treatment options that are available may have debilitating side effects, are often difficult to have covered by insurance providers, and do not work for all patients. There are some incredible specialists in this field, but not all patients are able to see them. Many physicians have a base understanding of this rare disease, but are unaware of the best course of treatment. FSR’s Physicians’ Treatment Protocol, written by our Scientific Advisory Board, resources physicians with the tools needed to determine the best action plan. This resource is available on our website as a mobile-friendly PDF, so patients are able to bring it to their physicians and work together on creating a treatment plan.

What do you think the biggest challenges are for sarcoidosis patients and their families? Quality of life is one of the biggest challenges faced by sarcoidosis patients. Many patients are chronically fatigued, in chronic pain, unable to work, and facing side effects from medication. This is to say nothing of the financial burden placed on patients when insurance refuses to cover treatment. Continued on pg. 16

FSR Contact Information 1820 W. Webster Ave., Suite 304 Chicago, IL 60614 Phone: 312-341-0500 Toll Free: 866-358-5477

On the web: www.stopsarcoidosis.org

www.facebook.com/StopSarcoidosis

@FdnSarcResearch 15

Patient Association Profile Sarcoidosis patients also struggle with a feeling of isolation and having nowhere to turn. As “the hub of all things sarcoidosis,” FSR provides support through education, awareness, and outreach initiatives. We have support groups across the country, and an active online community where over 20,000 patients are able to engage with and support each other.

Do you refer patients to clinical trials? Yes! Our website hosts a running feed of ongoing clinical trials, and we also have a Clinical Trial Interest Indicator, where patients can opt to hear more details about clinical trials that may be of interest to them. The FSR Patient Registry also has the ability to connect interested patients to researchers conducting clinical trials.

Here are some of the

SYMPTOMS of

SARCOIDOSIS Blurred vision, eye pain, severe redness, and sensitivity to light Fatigue, fever, swollen lymph nodes, and weight loss Persistent dry cough, shortness of breath, wheezing, and chest pain

Rash, lesions, discolored skin, growths under the skin

For more information on sarcoidosis visit:

www.stopsarcoidosis.org/patient-resources/what-is-sarcoidosis/

caringvoice.org • Fall 2015 • Managing Stress

Have you seen advancements in research and treatment for sarcoidosis? Sarcoidosis is slowly generating “buzz” within the medical community as well as the pharmaceutical industry. Physicians, for some reason, are starting to see more sarcoidosis and are becoming somewhat more familiar with it. The pharmaceutical industry is noting the increased diagnosis rate and has become more involved in including sarcoidosis as a focus for developing new drugs and repurposing current treatments for the symptoms of sarcoidosis. That being said, there is still a severe lack of funding and focus on this disease and FSR continues to push to be a catalyst for change, as we work to accelerate the research space. FSR is deeply progressive in our work to advance research. We recently built a network to accelerate research with the FSR Clinical Studies Network. This 8-member consortium brings together an international partnership of world-renowned medical institutes and researchers for unprecedented collaboration in studies and drug trials toward the treatment of sarcoidosis.

How can patients and caregivers become involved with FSR? The most important way to get involved with research is by joining the FSR patient registry. A major gap blocking the advancement of sarcoidosis research is a lack of patient data, including basic information, medical history, and even biospecimens – without this data and information, research essentially is stalled to purely theoretical studies. The patient registry serves researchers developing new knowledge, clinicians treating patients, epidemiologists analyzing disease data, and investigators seeking patients for new clinical trials and initiating natural history studies. A HIPAA compliant hosting facility provides a secure environment to protect properly consented de-identified patient information. By registering, patients can be actively engaged in the movement to find therapies and a cure for the disease. A patient holds the key to unlocking solutions — your information, your history, your body holds the answer toward a cure! Please join the fight against sarcoidosis by directly contributing to research! In addition, patients and caregivers are encouraged to check our website frequently for updates on patient conferences, events, webinars, and fundraisers. Join FSR at one of these events, a support group, our online community, or host your own fundraiser!

At a Glance

NARCOLEPSY

Narcolepsy affects an estimated

1 in

2,000 people in the United States. Thatâ&#x20AC;&#x2122;s 200,000 Americans, and approximately 3 million worldwide. every

Researchers have identified a gene that is linked to narcolepsy. About one quarter of the general population in the U.S. carries the

Narcolepsy with cataplexy

genetic marker for narcolepsy,

is also known as narcolepsy

Type 1. Narcolepsy without

but only one person out of about

500 of these people

cataplexy can also be called

will develop the sleep disorder.

narcolepsy

Type 2.

Symptoms of narcolepsy include

Narcolepsy is diagnosed through a sleep

excessive daytime sleepiness,

study, a set of medical tests requiring

is diagnosed through a sleep study,lab. a overnight stay in a sleep sleep attacks, cataplexy, sleepNarcolepsyan

paralysis, hallucinations, and disrupted nighttime sleep.

set of medical tests requiring an overnight stay in a sleep lab.For more information go to:

http://narcolepsynetwork.org/

Cloud 9 is Caring Voice Coalitionâ&#x20AC;&#x2122;s free, secure online portal. Log onto Cloud 9 at any time to apply for assistance and access all of your CVC-related information and communicate with a representative. Apply for financial assistance Real-time secure access Easily update your contact, address, medical, and insurance information View current grant information and recent payments CVC has made on your behalf

Registering is easy!

Send medication lists, receipts and other documents securely

Visit caringvoice.org and click on the Cloud 9 logo to register and access your account.

TIPS to Tame

Managing Stress

STRESS

Whether you’re living with a chronic illness, or caring for someone who is, don’t let excessive stress control you. Here are 10 techniques to manage the stressors in life and help you cope.

Robin Lawson reports

tress has a bad reputation, and for good reason. If left to linger it can lead to or worsen a host of physical and psychological problems, ranging from high blood pressure and heart disease to depression and memory loss. That alone has people searching for ways to prevent it. But not all stress is bad. Your body is designed to experience stressors in life and react to them with physical, mental, and emotional responses. On a good note, it’s nature’s way of keeping you alert and ready to avoid danger. Short bouts of stress can also motivate you to achieve a goal or overcome an obstacle. The key is having periods of relief in between, which often doesn’t happen — especially when you have a chronic illness or are caring for someone who does. The additional strains that come with a diagnosis make you particularly vulnerable to unrelenting stressors. That’s why it’s important to realize when chronic stress is settling in. While the signs may vary from person to person, common symptoms include: fatigue and sleep problems, upset stomach, muscle tension or pain, headaches, hair loss, worse-than-usual allergies, rashes, sadness or depression, anxiety, and forgetfulness. Recognizing your body’s stress signals is one of your first defenses against stress taking control. It’s equally important to use coping techniques that will help you become physically and mentally prepared to face life’s inevitable daily challenges.

caringvoice.org • Fall 2015 • Managing Stress

Follow a healthy diet

The mind and body work together and how well they function depends a lot on what you’re eating. Stressful events cause an increase in cortisol (a stress hormone), and cortisol in turn causes food cravings. This explains why during times of stress people often seek consolation in “comfort foods” — macaroni and cheese, fried chicken, pies, ice cream, and the list goes on — but the starch, fat, and sugars found in those dishes are far from comforting to your health. Well-nourished bodies are able to cope much better with the physical and emotional strains of stress. A proper diet can strengthen the immune system, stabilize moods, and reduce blood pressure. With that in mind, redefine your comfort foods by replacing the simple sugars and starches with healthier alternatives. The UCLA Center for East-West Medicine recommends the following nutrients to assist in stress reduction:

Managing Stress Get moving There’s good news when it comes to exercise and stress: virtually any form of movement will work in your favor.

Regular participation in physical activity — even if it’s simply walking — has shown to release tension, increase endorphins (your brain’s feel-good chemicals), improve your cognitive function, give you more energy, and improve sleep, which is often disrupted by stress. According to the American Psychological Association, “…the more sedentary we get, the less efficient our bodies [are] in responding to stress.” To help you get moving, pick an activity that you enjoy, find a friend to join you, set small goals, and stick with it by making it part of your daily or weekly schedule. Always consult your doctor before beginning an exercise routine to discuss any health concerns.

• Vitamin C: Foods high in vitamin C, like citrus fruits, can boost the immune system, and lower cortisol levels and blood pressure. • Complex carbohydrates: Whole grains, fruits, and vegetables can increase serotonin, which stimulates feelings of calmness, and stabilizes blood pressure. • Omega-3 fatty acids: Found in salmon, tuna, nuts, and avocados, omega-3 fatty acids have been shown to reduce surges of stress hormones. • Magnesium: Healthy sources of magnesium include leafy greens, salmon, and soybeans, which help fight fatigue.

Try yoga

With its proven ability to help you manage stress, lower blood pressure, improve heart function, and reduce aches and pains, there’s no wonder yoga is among the top mind-body relaxation techniques. Yoga has many styles, forms, and intensities that involve breathing exercises and various poses designed to improve flexibility, balance, strength, and range of motion. In the process you learn to control your body, quiet your mind,

and train your nervous system to respond to challenging experiences with an underlying sense of calm. The National Library of Medicine reports that “there is an indisputable connection between a person’s overall physical and mental health and the inner peace and well-being yoga is designed to achieve.”

Yoga is generally considered safe for most individuals, but everyone’s bodies and abilities are different so it’s important to find an instructor who will be attentive to your needs and health restrictions.

Managing Stress

Meditate

Research has shown that meditation can have a positive influence on a wide variety of chronic illness symptoms by alleviating the severity of pain, depression and stress, and by boosting a person’s mood and general well-being.

Relax with massage therapy Studies have shown that massage therapy can significantly reduce stress, both physically and psychologically.

According to Selena Browne, spa director of Aura Spa & Salon in Richmond, Va., the research into the effects of massage therapy, on a broad spectrum, include: • Decreasing blood pressure • Decreasing insulin levels • Decreasing cortisol • Stabilizing heart rate • Improving immune response • Stabilizing body temperature • Diminishing experience of pain/pain sensitivity • Increasing salivary activity (deactivates parasympathetic nervous system so autonomic nervous system dominates) • Improving mood • Decreasing perception of stress The Mayo Clinic reports that massage therapy is increasingly being recommended for a number of medical conditions, in addition to standard treatment, as research has shown that it’s effective in reducing stress, pain, and muscle tension. “The simple act of touch-focused care, even a simple 5-minute hand or foot massage, can be useful in lowering a patient’s perceived level of stress,” the National Institutes of Health explains. Several types of health care professionals, such as physical therapists, occupational therapists, and massage therapists can perform the various types of massage therapy. Before getting a massage, consult your doctor to see if massage therapy will benefit you as it is not recommended for people with certain medical conditions, like bleeding disorders, severe osteoporosis, fractures, and deep vein thrombosis. 20

caringvoice.org • Fall 2015 • Managing Stress

Mindful meditation, in particular, encourages you to become more fully aware of yourself and the world around you, and increases your ability to react to challenges and experiences without judgment. You eliminate the thoughts that are crowding your mind and causing stress. Sound difficult? It’s really not. Anyone can practice meditation, anywhere — whether you’re walking, riding in a car, standing in line, or sitting outside. If you’re just beginning it will help to find a quiet spot where you won’t be disturbed. Start by focusing your attention on your thoughts, an object, or even your breathing, and take deep, evenly-paced breaths to increase the supply of oxygen to your brain and relax your muscles. Focused breathing is key, as it evokes the body’s natural relaxation response. According to The American Institute of Stress, abdominal breathing stimulates the parasympathetic nervous system, which promotes a state of calmness. People who practice mindful meditation “often report greater joy for the simple things in life, such as a shared moment with their child or partner or more awareness of the change of seasons. We begin to realize that there is more ‘right’ with us than ‘wrong’ with us as we become more engaged in our lives,” the University of Massachusetts Medical School Center for Mindfulness explains.

Managing Stress Connect with others

When you’re experiencing a life-changing event, like a chronic illness, you shouldn’t face it alone. Having a solid social network and support system is one of the best ways to help you cope. Aside from the professional help you receive from doctors and therapists, and the extended community help from family and friends, support groups can offer you an opportunity to connect with others who have similar experiences and feelings. By participating in a support group, whether it’s in person, by phone, or over the internet, you can get practical advice or information about treatment options, compare notes about resources, improve

your coping skills and sense of adjustment, develop a clearer understanding of what to expect with your situation, and gain a sense of empowerment and control, the Mayo Clinic reports. Talking openly and honestly about your feelings will help you feel less lonely and isolated and can reduce stress, depression, and anxiety. You can find a support group by asking your doctor for information; checking with hospitals, community centers, or churches in your local area; or contacting organizations dedicated to your disease or condition. CVC offers a list of patient associations at http://bit.ly/cvc-resources.

Manage your time well

Lack of time is a common stressor. As your to-do list grows with doctor appointments, meetings, and chores, your time dwindles and you’re left feeling overwhelmed and often out of energy. Review your daily and weekly activities to see what you can take off your plate. Analyze your time, prioritize tasks, and stay on track by keeping a calendar. By removing any task that’s negotiable, you’ll free up more time for yourself.

Step outside

There’s something to that “breath of fresh air” feeling you get from being outdoors. Fresh oxygen is a natural energizer and the sights and sounds of nature that accompany it are fuel for the soul. Too much time spent inside has been associated with depression and can also zap you of vitamin D (sunshine is the best source), which offers a wide range of health benefits, including regulating the immune system and neuromuscular system.

According to HelpGuide.org, if you regularly make time for relaxation or something you enjoy, you’ll be in a better place to handle life’s challenges. If you find that you can no longer do some of the things you loved doing before, try something new. Even simple pleasures like reading a book, watching a movie, or listening to music can be a soothing way to relax. Do at least one thing every day that you enjoy, even if you only do it for 15 minutes. That’s your time to recharge and it should be considered a necessity, not a luxury.

According to the University of Minnesota Center for Spirituality & Healing, your environment plays a vital role in your stress levels. Being in nature, or even viewing scenes of nature, can reduce feelings of anger, fear, and anxiety and increase pleasant feelings. It also contributes to your physical well-being by reducing blood pressure, muscle tension, heart rate, and the production of stress hormones. Even if it’s just for five minutes, take a step outside to help boost your mood. 21

Managing Stress

Stress is well known to rob people of quality sleep right when they need it the most. According to the American Psychological Association (APA), 43% of adults lie awake at night due to stress and many of them report their stress levels increase as a result. It’s a vicious cycle that can have ill effects on your health since sleep affects your memory, judgment, mood, and aids in muscle repair.

Write to heal

There’s a reason journaling has been a common practice for so long. Just as talking about the stressors in your life helps release bottled-up tension, writing about your thoughts and emotions can similarly offer a source of relief. Studies have shown that writing can have a beneficial effect on a person’s well-being. According to Harvard Medical School, “writing about thoughts and feelings that arise from a traumatic or stressful life experience — called expressive writing — may help people cope with the emotional fallout of such events.” Instead of suppressing feelings, which makes your body tense and dims your mood, expressive writing can help you clear your mind, encourage focused thought, process built-up emotions, and find meaning in them. Dr. James W. Pennebaker, chair of the Department of Psychology at The University of Texas at Austin, is a leading researcher in the field 22

Sleep tight

of expressive writing whose studies have shown that when some people write about emotionally challenging experiences for just 20 minutes at a time over a span of three or four days their physical and mental health improves. In his book, “Writing to Heal,” Pennebaker offers the following tips: • Find a time and place where you won’t be disturbed • Write continuously for at least 20 minutes • Don’t worry about spelling or grammar • Write only for yourself • Write about something extremely personal and important for you • Deal only with events or situations you can handle now Keeping a gratitude journal can also help you remember all of the good things in your life, and remind you to celebrate any new accomplishments, no matter how small. For more information, or to order Dr. Pennebaker’s book, visit the Center for Journal Therapy at www.journaltherapy.com.

caringvoice.org • Fall 2015 • Managing Stress

Ongoing sleep deficiency is also “linked to an increased risk of heart disease, kidney disease, high blood pressure, diabetes, and stroke” and “you may have trouble fighting common infections,” the National Institutes of Health reports. Experts recommend seven to nine hours of uninterrupted sleep, but you won’t achieve that if your mind is racing and tripping over anxieties. This is where the relaxation techniques like meditation, yoga, deep breathing exercises, and journaling, can offer a source of relief. In addition, the APA recommends keeping a regular sleep/wake schedule; avoiding caffeine, alcohol, and heavy meals before sleep; and minimizing noise, light, and excessive hot and cold temperatures where you sleep. If sleeping problems persist for more than a few weeks, consult your physician.

For more stress management tips, please visit our Pinterest board: www.pinterest.com/ caringvoice/de-stress/

DAILY DE-STRESS

Managing Stress

in only 10 minutes

By Jessica Scalin, yoga instructor

Schedule Early

Schedule 10 minutes of focused breathing meditation into your daily routine. Meditating early in the day will start your day off fresh, clear-headed, and calm.

Pick a Private Location

Select a room or area where you have privacy and will not be interrupted that makes sense for your lifestyle. Example: Leave for work early and sit and breathe in the car 10 minutes before you go in. Or, sit on your porch, in the bathroom, or laundry room.

Sit Straight

Sit with your spine straight, keeping your shoulders down and back. Eyes can be opened or closed. Relax your face.

Knee or Back Pain

If you experience knee or back pain from sitting on the floor, sit on a chair that allows both your feet to touch flat on the floor; check to make sure that the angle of the seat does not allow your knees to come higher than your hips.

Focus Your Breathing

Focused breathing is a very effective stress reducer and health booster. It turns on the relaxation response, boosting the immune system, increasing lung capacity, and improving concentration and executive decision-making skills. Breathing is the best and most accessible tool that you have to tap into your well-being.

Take Deep Breaths

Begin with deep breaths in through the nose and out through the mouth for the first 5 minutes. Transition to breathing in through the nose and out through the nose for the last 5 minutes.

Do It Once a Day

Take time for focused, breathing meditation at least once a day but know that this is available to you any time in the day when you feel overwhelmed or stressed. 23

Lifting the cloud of depression by Robert Mayfield, M.D.

Don’t be afraid to ask for help. Prompt attention will help ease the severity of symptoms.

Chronic —long lasting and difficult to eradicate. Illness —an unhealthy condition of body or mind. Put these two words together and their displeasure to the ear is magnified. Their effects on the soul can be devastating. Depression is one of the most common complications of chronic illness. It is estimated that up to one-third of people with a serious medical condition have symptoms of depression. After all, chronic illness is characterized by dramatic life changes, changes in one’s own abilities to carry out dayto-day tasks, possibly inhibiting the ability to work and earn a living. Chronic illness may keep an individual from doing the things that they normally enjoy. These limitations on activity imposed by an illness lead to the gradual withdrawal from rewarding activities.1 Isolation from social interactions can compound the problem and often 24

there is fear over what the future holds. Risk of depression is related to the severity of the illness and prior history. For conditions such as heart attack and stroke, having depression can even affect the outcomes of the disease with earlier mortality rates and disease complications. Depression is associated with a poorer prognosis and more rapid progression of chronic illness. Similarly, depression worsens the symptoms of chronic illness such as fatigue and pain. For these reasons it is imperative to recognize the signs and symptoms of depression and seek treatment sooner rather than later. Too often, the

caringvoice.org • Fall 2015 • Managing Stress

mistake is made of attributing the symptoms to the disease, or looking at them as “normal” or “expected.” While there is a normal grief process associated with the diagnosis of a chronic illness, it should be temporary and not prolonged. Although there needs to be sufficient time to mourn loss and to be angry and sad regarding impairments caused by chronic illness, if symptoms last three months or more, treatment becomes mandatory. It is important to recognize the following signs and symptoms: 1. Sleeplessness that is often manifested by waking early in the morning with an inability to fall back asleep. This is often the initial symptom that heralds impending depression. 2. A loss of interest in normal activities that used to be pleasurable. While it may

Health Watch be likely that abilities can be limited by chronic illness, a complete lack of desire to engage in what used to be fun is a good measure of depression. 3. Feelings of guilt or worthlessness may be present and magnified by a diagnosis of chronic illness. 4. A loss of energy and constant feeling of fatigue that goes beyond just feeling tired. Some describe it as a “black hole.” 5. An inability to concentrate or focus on tasks is frequently present. 6. Changes in appetite occur that can either be increased or decreased depending upon the individual. 7. Movements can become slow and labored to the point it feels like an effort to even speak. 8. Thoughts of harming oneself or suicide may be present. If any number of these symptoms is present, prompt attention is critical, especially if there are thoughts of harming oneself. Enough stress cannot be placed on the fact that there is help for these symptoms. Patients need to be proactive in their care as the presence of chronic illness may reduce the likelihood of a health care provider recognizing and treating depression. The provider may be more focused on the illness and reluctant to spend time on other issues in what is likely

a limited appointment time. Due to these circumstances, it is important for a patient to feel comfortable with their doctor and be able to share anything with them. Having an open and honest dialogue ensures better diagnosis and decision making. As the National Institutes of Health reports, “Recognition and treatment are crucial; depression worsens the course of a chronic disease.”2

discourage a patient from seeking the help they need. Once again, treatment can improve quality of life and alleviate some of the symptoms of disease. Further interventions such as “talk therapy” and group support can help. Evaluate your support circle and enlist the help of those closest to you. Reaching out to others and avoiding isolation is essential in a return to your

“Too often, the mistake is made of attributing the symptoms to the disease, or looking at them as ‘normal’ or ‘expected.’” Recently, researchers at the University of Virginia School of Medicine found that the brain is connected to our lymphatic system, a component of our immune system.3 While the researchers are more intent on the effects of the immune process on the brain such as in Alzheimer’s disease, one could hypothesize that this is evidence of the mind’s effects on the body. Perhaps depression can lower our immune response. As discussed, depression worsens symptoms of chronic illness like pain and fatigue. Getting prompt and appropriate treatment will lessen the severity of symptoms experienced. There are many good treatments for depression and medication is often necessary. It is important not to view adding a medication to what is likely an already complex regimen as defeat. Such fears and perceptions may

normal self. There are many support groups for those with chronic illness and communication with others with similar experiences helps. Also, one should strive to be as active as possible. A program of simple exercise or even yoga offers some relief. It is important to have dreams and re-establish realistic goals — have something to look forward to. If this article resonates with you, it is important to seek treatment. If you feel as if you are in crisis, there are many services available to you such as 1-800-273-TALK. Here you can be connected to a trained counselor in your area and the number is available 24 hours a day. Finally and most importantly, remember to take good care of yourself and simply aspire to do the best that you can. In essence, that is all we can ask of ourselves as human beings.

1. A prospective population-based cohort study of the effects of disablement and social milieu on the onset and maintenance of late-life depression. The Gospel Oak Project VII.Prince MJ, Harwood RH, Thomas A, Mann AHPsychol Med. 1998 Mar; 28(2):337-50.

2. West J Med. 2001 Nov; 175(5): 292–293.; PMCID: PMC1071593; Treating depression in patients with chronic disease; Gregory E Simon 3. http://www.news.virginia.edu/content/researchers-f ind-textbook-altering-link-between-brain-immune-system

NEWSMAKER: NUTRITION

Q&A Tamara Melton is a registered dietitian nutritionist and spokesperson for the Academy of Nutrition and Dietetics — the world’s largest organization of food and nutrition professionals. Community recently asked Melton to explain the importance of proper nutrition and how to achieve a healthy diet.

How does food impact health?

Everything that we eat becomes a part of our bodies’ cells. The saying “you are what you eat” is quite literal. The foods that we eat can affect our mood and energy levels. Eating a healthy diet can help prevent or manage chronic diseases, such as heart disease, diabetes, and high blood pressure. A healthy diet can also decrease the risk of developing cancer. New research is also suggesting that a healthy diet can decrease the risk or progression of certain dementia disorders. I would say that the foods we eat have the largest effect on our health, more than any other behavior, or even our genetics.

What is a well-balanced diet?

A well-balanced diet is a diet that focuses on optimal nutrition. This means a diet that provides enough total calories, but not too many so that the diet can cause weight gain. The calories should provide the appropriate amount of nutrients such as carbohydrates, protein and fat, vitamins, minerals and water, to support bodily functions and to promote health. A well-balanced 26

diet is varied, and it still allows for one to splurge every now and then.

What are the most common dietary mistakes people make?

One mistake is eating portion sizes that are too big. Sometimes people feel that since they are eating a healthy food they can eat as much as they want. But even healthy foods contain calories. And too many calories over what your body needs to maintain your weight will lead to weight gain. Another common mistake is not taking in enough fruits and vegetables. These foods are the foods that contain so many of the nutrients we need to maintain health, and they are often lacking in many diets. Another common mistake is dieting. Diets don’t work because they are eating styles that rely on restricting foods. Biologically, restricting foods does not promote long-term weight loss. Psychologically, diets are hard to maintain. You feel deprived, and the amount of work it takes to avoid your favorite foods doesn’t correspond with the amount of weight you eventually lose: too much work for too little weight lost.

How can proper nutrition help treat chronic illness?

Proper nutrition can help your body create defenses to fight chronic illnesses. Nutrients in healthy foods help to clear artery walls of plaque, decrease the amount of blood sugar released

caringvoice.org • Fall 2015 • Managing Stress

Tamara S. Melton, MS, RDN, LD Nutrition and Wellness Consultant Academy of Nutrition and Dietetics Spokesperson

into the bloodstream, lower blood pressure and more. Proper nutrition can also lead to a reduction in the size and amount of fat cells, which reduces body size and the risk or severity of obesity.

What dietary regimens are beneficial for chronic disease management?

Eating plenty of fruits and vegetables is important because fruits and vegetables provide fiber, water and cancer-fighting antioxidants. Choose foods that contain healthy fats, such as olive or canola oil, avocados, salmon or sardines. These fats help decrease the risk of cardiovascular disease. Drinking water is important as water is part of all of our cells, and helps lubricate joints and remove toxins from our bodies.

What is the goal of medical nutrition therapy?

The goal of medical nutrition therapy (MNT) is to use appropriate nutrition to promote the health of someone who has a chronic or acute condition. Different conditions require different calorie and nutrient needs, of which a registered dietitian nutritionist (RDN) is trained to determine. RDNs are also trained to identify and prevent drug-nutrient interactions, since so many people with chronic diseases are taking medications that are affected by the foods they eat.

Newsmaker Q&A Who should seek dietary counseling?

Anyone who is struggling to achieve a healthy diet would benefit from nutrition counseling. This may include people with chronic diseases, people who need to lose weight, and also people who are otherwise healthy, but need advice on how to eat to promote health.

How can someone achieve longterm weight control?

In a word: consistency. A person must consistently practice all of the habits that support a healthy weight. Of course this includes eating the correct amount of calories, but also includes several days per week of physical activity, getting enough sleep, avoiding stress, and not dwelling on slip-ups in the routine.

How does diet also affect a person’s mind and mood?

someone is not careful he or she could take too much of a nutrient in the supplement form and be in danger of reaching toxic levels.

What advice can you offer on using “food as medicine”?

Food is medicine, however many

times non-food medicine is a medical

necessity. That said, I would say to think of food as the first line of defense in preventing or treating diseases. So

even if you are taking an over-the-

counter or prescription medication to treat a condition, still think of a healthy diet as another way to treat any conditions you may have. Often, this

way of thinking helps motivate one to eat healthy.

What is the difference between a dietitian and nutritionist?

Every dietitian is a nutritionist but

Our brains can only use carbohydrates for energy. So if we do not take in enough carbs we can quite literally have a difficult time focusing and thinking. Other foods such as foods high in sugar, can cause a spike in energy, followed quickly by a crash in energy. This would cause a major mood swing as well! Foods that are high in fat can also make someone feel sluggish and tired.

not every nutritionist is a dietitian.

What are the pros and cons of vitamin supplements?

Vitamin supplements can help provide “insurance” for when we don’t eat the best. However, sometimes people use vitamin supplements as an excuse to eat unhealthy, thinking that the supplements will give them all of the nutrients they need. However, the supplement is just that — to supplement a healthy diet, not to replace it. Also, if

Registered Dietitians (RDs) and Registered Dietitian Nutritionists (RDNs) are

required to complete at least a bachelor’s degree and an accredited post-baccalaureate 1200-hour supervised practice

I need a food that helps with... Reducing inflammation: • Foods containing omega-3 and omega-6 fatty acids such as salmon and tuna; avocado; nuts and seeds. • Fruits and vegetables have antioxidants that help reduce inflammation, especially colorful fruits and veggies. • Herbs and spices can assist in inflammation reduction, as they also contain antioxidants. These include basil, oregano, thyme, turmeric, cinnamon, and cloves.

Improving memory function:

program. We are then required to sit

• Cruciferous vegetables, like broccoli, kale, and chard

complete 75 hours of continuing

• Blueberries, cherries, and blackberries

RDN. We receive much more training beyond metabolism, biochemistry

• Omega-3 fatty foods, like salmon, tuna, and mackerel

trained in wellness and prevention,

• Walnuts

for a comprehensive exam, and must education in order to remain an RD or

and MNT. We are also educated and food safety and food service, business

and in how to use technology in our practice. We take courses in counseling skills since this is such a big part of all of our jobs, no matter what area of practice we work in.

To locate an RDN in any part of the country, visit: www.eatright.org/find-an-expert 27

How to make eating right a stress-free event By Chef Mareya, aka “The Fit Foodie” Founder of eatcleaner.com

t’s so simple, but hard to always remember: food feeds us.

It gives us energy, vitality, and strength. It nourishes our complex muscular and vascular systems to perform miracles daily. So why is it that so many people have an unhealthy relationship with food? It seems like the word “diet” is a permanent part of many people’s vocabulary, and they’re either trying one, on one, or have fallen off of one and trying to get back on. On the more extreme side, it is estimated that 8 million Americans have an eating disorder – seven million women and one million men. As people are bombarded with different information on how to manage their weight, the pounds continue to pile on and people are more and more confused on how to achieve balance. About 10 years ago, I finally beat a severe eating disorder that I had lived with from my late teens into my twenties. I never admitted it to anyone, including my own parents, because I thought it meant I was a complete failure. You could say my fear of food was eating me alive. When you come from a family that plans lunch while eating breakfast and has conversations about dinner at the lunch table — where you’re not supposed to leave the table without stuffing yourself to the gills — it’s easy to get crazy about the subject. My eating disorders started in my late teens. Somehow, I lost my way from the dinner table. I swung from gluttonous overeating binges to starvation diets.

key is to “ The fill up on foods

as close to what you would find in nature.

”

At my lowest, I reached 87 pounds. In a twisted way, I thought this was an incredible achievement, and in my mind, restricting my calorie intake and getting to that new low showed discipline. But my body was clearly in distress. I started losing clumps of hair. I became an insomniac 28

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and began having panic attacks and memory black outs. I had such an unhealthy relationship with food that I avoided any social events where eating was involved, which alienated me even more from friends and family. When I missed my best friend’s wedding and felt so guilty afterward, I knew it was time to make a change. The road to healing was long and winding, but the pivotal point was my newfound knowledge in sound nutrition. Once I understood how to combine macronutrients, eat smaller meals more frequently and focus on nutrient dense foods, it all fell into place. As soon as I started eating regularly, it was like I had gotten a shot of adrenaline. I looked forward to waking up in the mornings and I had an insane amount of energy and enthusiasm. The insomnia began to turn into hours of deep sleep. The panic attacks went away. I felt comfortable showing up at food functions and even began hosting dinner parties to flex my culinary muscles. I learned what it meant to feed my body at the cellular level. I didn’t have to be tempted by a sponge cake filled with cream and a 20-year shelf life. What was that going to do for me, anyway? Food was meant to keep my body moving and thriving and even though there were a lot of choices out there, I learned which ones were best for me inside and out. The recipe to happiness turned out to be creating a real strategy around being prepared for good food choices so I wouldn’t be in a “Food 911” situation. These 5 tips can help you achieve success and pure bliss in the kitchen:

1. Ditch the diet mentality

How is it that the number of people dieting has increased, and so has the percentage of obesity in America? Because dieting doesn’t work. Diets come from a place of deprivation and no one likes to feel that way. If you’re not eating enough of the right foods in the right combination, it can actually undo all the good, including burning muscle instead of fat.

Eat Cleaner There is nothing more stressful, mentally and physically, than trying to reinvent what your body requires you to do to survive and thrive daily. The better and more consistent your habits become concerning what you eat, when you eat, the quantity of food you eat, the quality of food you eat, and how those foods combine, the easier this concept of health maintenance becomes. When you eat cleaner and exercise effectively, you are living a sustainable lifestyle - the Cleaner Plate Club Lifestyle - that feeds your sanity. Being too restrictive, not eating the right combination of lean protein, healthy fats, and complex carbohydrates, and not eating often enough, can all sabotage your efforts to get healthy.

2. Eat more often

One of the most important and overlooked keys to controlling your weight that I learned is managing your blood sugar. If your blood sugar levels and insulin levels are spiking and dropping, it puts an enormous strain on your metabolic system and signals to your body the “I’m in distress mode” message to store fat and energy. Your body is pre-wired to take care of you in the event

of an emergency. Stop telling your system that it needs to store fat and you can turn your body from a fat storing machine into a fat burning machine.

3. Focus on whole foods

Human beings are amazing machines. Keeping our engines humming is a pretty clear-cut science, but most people don’t eat enough whole food and don’t eat often enough for their bodies to work efficiently. The way to real, effortless, and permanent weight loss is a proven formula of eating the right combination of foods – or what I call “The Fit Foodie Triangle” – at regular intervals throughout the day. This will rev up your metabolism higher than you ever thought possible. While the point is not to be a slave to calories, this proven formula of eating cleaner, unprocessed meals and focusing on the right combinations at the right times will help get you where you want to go and keep you there for life. The key is to fill up on foods as close to what you would find in nature — items recognized by our grandparents. A balanced meal would look like this: ½ the plate filled with fresh fruit and vegetables, ¼ of the plate filled with lean protein, including natural meats and poultry, wild-caught

Continued on pg. 30

Eat Cleaner seafood, eggs, nuts and seeds; and ¼ of the plate filled with slow burning carbohydrates. Single ingredient grains like farro, buckwheat and brown rice are all good choices.

Tips from the Cleaner Plate Club

1 2 3 4 5

4. Prep Ahead

My favorite quote of all time and my mantra for life is: “Fail to plan, plan to fail.” There’s nothing more distressing than being hungry and having a bare pantry and fridge. By taking a couple of hours on a Sunday to shop, wash and chop fruit and veggies with our Eat Cleaner Fruit + Vegetable Wash to help make them safer and last up to five times longer, cook a batch of brown rice and grill chicken breast or salmon, you have endless combinations of meals to enjoy throughout the week. Invest in good set of BPA-free containers and turn your fridge into a salad bar with all your pre-made, healthy options. Make snacking a fast food event by having cut-up veggies with hummus or nut butter with cut apples, preportioned and ready to grab and go. Carry a bag of nuts with you and keep something in the car. You never want to be caught without something in the case of a food emergency.

5. Make it a Habit

Your body needs regularly scheduled care. Make proper nutrition a habit, and your relationship with your plate will never be more fulfilling. Once I got the hang of how to put it all together, it took preparation and practice to be consistent. They say it takes 21 days of repetition to create a habit, but when it comes to food I think you need 31 days – enough days to get you through even the longest months of the year. My book, “The Clean Eating Handbook: 31 Essential Rules for Health, Wellness, and a Fabulously Fit Life,” has bite-sized approaches that, when practiced every day, will help you establish the most important habits you’ve ever wanted to make – the ones that will carry you through your months and years of the fit life. I call them my Fit Foodie Filosophies because, as guiding principles, they are a mindset for your new, cleaner lifestyle. Just like anything new, don’t worry if there are days that don’t go as planned. That will happen because life happens every day. The idea is to just get back on board and keep practicing, eating, repeating and doing it all over again. Soon enough, you’ll be making some beautiful music in that kitchen of yours. Your body, mind and spirit will thank you for your new vitality. Are you ready to sink your teeth in? 30

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Fill half the plate with fruit and veggies Limit oil and steer clear of saturated and trans fats Avoid processed and refined foods and snacks Choose pesticide and antibiotic-free options Drink 8 glasses of water a day

For more information visit: http://eatcleaner.com

Fit Foodie No-Bake Fit Bites INGREDIENTS 1 cup gluten-free oats, pulsed in a food processor to a powder ½ cup unsweetened shredded coconut (use ⅓ cup for topping) 1 scoop low sugar protein powder ½ cup ground flax meal ½ cup dark chocolate chips (70% or more

cocoa powder)

1 teaspoon Stevia, liquid or granulated ⅔ cup unsweetened coconut, almond or rice milk 1 teaspoon pure vanilla extract 2 tablespoons natural almond or peanut butter (use powdered peanut

butter if trying to reduce fat intake; substitute pureed pumpkin and omit coconut if there are nut allergies)

DIRECTIONS In a small bowl, mix all ingredients together until thoroughly mixed. Freeze for 30 minutes to help hold its shape. Roll into 2-inch balls and roll in shredded coconut. Optional: Dip in melted (70% or more unsweetened cocoa content) dark chocolate or roll in unsweetened shredded coconut and chopped nuts. Allow to dry completely before wrapping. Wrap individual balls in wax paper and store in an airtight container. Refrigerate or freeze. Allow to rest at room temperature for 5 minutes before eating. YIELD: About 20-25 Balls

SERVING SIZE: 1 Ball (1 oz.)

Flavors Flavors of Fall

Chicken Tortilla Soup* INGREDIENTS 4 teaspoons minced garlic 1 ⅔ cups diced onion 8 cups low-sodium chicken broth ¼ cup chopped cilantro 1 ½ cups tomato purée 1 tablespoon ground cumin 2 teaspoons chili powder

3 ounces extra-sharp cheddar, shredded ¼ cup diced avocado ¼ cup diced tomato ½ teaspoon kosher salt 2 bay leaves 6 ounces chicken breast, shredded 7 6-inch corn tortillas, thinly sliced

DIRECTIONS Preheat the oven to 350°F. In a small pot, sweat the garlic and onion in a small amount of the chicken broth until the onion is translucent, 4 to 5 minutes. Purée the mixture in a blender or food processor. Set aside. Toast the tortilla strips in the oven until crisp. Set aside ½ cup of the strips for garnish and crumble the remaining strips.

Fall of

As the weather turns cooler, keep fit and warm with these flavorful recipes provided by registered dietitians who are keeping your health in mind.

Combine the cilantro, tomato purée, onion purée, and crushed tortillas in large soup pot. Bring to a simmer over medium heat. Add the remaining broth, the cumin, chili powder, salt, and bay leaves. Simmer until the soup is flavorful, about 15 minutes. Remove and discard the bay leaves. Purée the soup in a blender or food processor. Serve the soup garnished with the chicken, cheese, avocado, diced tomato, and the reserved tortilla strips. YIELD 6 servings Nutritional Information Per Serving: Calories 236, Protein 14.5 g, Carbohydrates 25 g, Fiber 4 g, Total Fat 8 g, Saturated Fat 3.5 g, Sodium 355 mg. Jennifer Stack, Registered Dietitian, Associate Professor, The Culinary Institute of America, Hyde Park New York.

Flavors of Fall Spicy Sausage and Peppers Pasta INGREDIENTS ¾ pound whole-wheat pasta 1 pound spicy Italian sausage links ½ tablespoon olive oil 2 garlic cloves, minced 1 medium onion

3 bell peppers 1 tablespoon Italian seasoning 1 14.5 ounce can diced tomatoes (do not drain) Freshly grated Parmesan cheese

DIRECTIONS Boil medium pot of water. Cook pasta, and keep warm. Fill large saucepan with 1 inch of water. Place sausage links into water, cover and cook for 5 minutes. Turn sausages over and cook until done (internal temperature of 165 degrees). Remove sausage and set aside to cool.

and sauté 2 minutes. Add bell peppers and sauté 3-4 minutes. While bell peppers are cooking, slice sausage into ½ inch slices, and place on paper towels to drain. Add stewed tomatoes and Italian seasoning to bell pepper mixture. Simmer for 2-3 minutes. Add sausage and simmer, covered, for 2-3 minutes. Spoon sausage, peppers and onions over pasta, top with Parmesan cheese. YIELD 6 servings Nutritional Information Per Serving: Total Calories 380, Protein 24 g, Carbohydrates 52 g, Fiber 9 g, Fat 10 g, Sodium 624 mg, Sugar 8 g, Cholesterol 49 mg.

Wipe saucepan with clean paper towel. Heat olive oil in saucepan over medium-high heat. Add garlic and onion

Tamara Melton, Registered Dietitian and Nutritionist, Nutrition Communications and Wellness Consultant, Academy of Nutrition and Dietetics Spokesperson.

Black Bean and Quinoa-Stuffed Zucchini*

DIRECTIONS Preheat the oven to 350°F.

INGREDIENTS 4 large zucchinis, halved lengthwise 5 teaspoons olive oil ¾ teaspoon kosher salt ¼ teaspoon freshly ground black pepper ¼ diced small onion ¼ cup diced celery ½ jalapeño, seeded and minced ½ cup quinoa

½ teaspoon ground cumin ½ teaspoon ground coriander 1 cup vegetable broth 1 cup cooked black beans ¾ cup grated cheddar 1 tablespoon chopped cilantro 1 tablespoon chopped marjoram 2 teaspoons chopped oregano

Use a spoon to scoop about three-quarters of the flesh from the zucchini, reserving the flesh for another use such as making vegetable broth. Transfer the zucchini to a baking sheet. Brush the zucchini with 4 teaspoons of the olive oil and season with ½ teaspoon of the salt and the pepper. Heat the remaining 1 teaspoon olive oil in medium saucepan. Sweat the onion, celery, and jalapeńo until soft. Add the quinoa, cumin, coriander, and the remaining ¼ teaspoon salt. Toast briefly but do not allow the mixture to burn. Add the vegetable stock and bring to a boil. Reduce the heat, cover, and simmer until the quinoa is soft and the liquid is absorbed, about 15 minutes. Combine the cooked quinoa, beans, cheese, cilantro, marjoram, and oregano. Spoon the mixture into the hallowed cavity of the zucchini, pressing to make sure it stays in place.Bake until the zucchini is tender, 15 to 20 minutes. YIELD 4 servings Nutritional Information Per Serving: Calories 289, Protein 17 g, Carbohydrates 37 g, Fiber 9 g, Total Fat 9.5 g, Saturated Fat 2 g, Sodium 459 mg. Jennifer Stack, Registered Dietitian, Associate Professor, The Culinary Institute of America, Hyde Park New York.

Flavors of Fall Chocolate Cappuccino Shortbread with Dark Chocolate Glaze* INGREDIENTS 8 ounces unsalted butter, soft ½ cup dark brown sugar, packed 2 cups all-purpose flour ¼ cup cocoa powder 1 teaspoon espresso powder 2 tablespoons cornstarch 2 tablespoons granulated sugar 3 tablespoons dark chocolate glaze DIRECTIONS Preheat the oven to 350°F. Line a 9 by 13-inch cake pan with parchment paper. Cream the butter and sugar in a mixer until soft and smooth. Stir together the flour, cocoa, espresso powder, and cornstarch. Add the flour mixture to the butter mixture and mix on low speed until the ingredients are incorporated and start to form a dough. Turn the dough out onto a lightly floured board and knead to smooth the dough, about 5 times.

Something

Roll out the dough on a lightly floured surface to the size of the prepared pan. Transfer to the pan and press in evenly. Prick the shortbread with the tines of a fork to prevent shrinkage. Bake in the center of the oven for 15 minutes. Rotate the pan and bake until very lightly browned, 15 minutes or more. Remove from the oven and sprinkle with the sugar. Allow to cool in the pan for 10 minutes then cut into 30 bars. Cool completely in the pan. Drizzle the glaze over the tops. YIELD 30 cookies

For the Dark Chocolate Glaze* INGREDIENTS 3 ounces dark, bittersweet chocolate (60% cacao) ¼ cup almond-cashew cream 1 tablespoon agave syrup DIRECTIONS Combine the ingredients in a double boiler and stir until melted and well mixed.

Nutritional Information Per Serving: Calories 115, Protein 1 g, Carbohydrates 13 g, Fiber 0.5 g, Total Fat 6.5 g, Saturated Fat 4.5 g, Sodium 2 mg. Jennifer Stack, Registered Dietitian, Associate Professor, The Culinary Institute of America, Hyde Park New York. *From The Diabetes-Friendly Kitchen: 125 Recipes for Creating Healthy Meals by Jennifer Stack, Registered Dietitian, Associate Professor, The Culinary Institute of America, 2012, John Wiley and Sons.

YIELD 10 tablespoons 33

Insuring your health

CVC Program Manager Lauren Ruiz explains the process of applying for health insurance coverage through a Federal or State Marketplace and highlights changes in the Open Enrollment Period.

he healthcare system is always changing. Just like when your doctors make adjustments to your treatments and care, the responsibility to keep up with the changes falls on you.

The process of applying for coverage through a Federal or State Marketplace can be overwhelming. Understanding the Marketplace will help you complete each part of the process in an easy, stress-free manner.

Open Enrollment for Medicare remains the same and individuals can still apply for Medicaid all year long; however, for the third year in a row, the Open Enrollment Period for the Health Insurance Marketplace under the Patient’s Rights and Affordable Care Act (ACA) is changing.

Let’s take a look at some basics of the ACA:

January 1 – March 31; Medicare General Enrollment Period to elect Original Medicare if your Initial Enrollment Period has already passed October 15 – December 7; Medicare Prescription Drug Plan Open Enrollment Period to add new coverage or change your existing Prescription Drug or Medicare Advantage Plan November 1 – January 31; Private Health Insurance Open Enrollment Period to elect coverage through a Federal or State Marketplace or directly from a private insurance carrier All year; Medicaid Enrollment Period 34

Metal Levels One of the most noticeable differences between traditional individual insurance policies and ACA-compliant insurance policies is the benefit structure. Plans offered through the Marketplace are sorted into four primary tiers: Bronze, Silver, Gold, and Platinum. Bronze – Insurance typically covers 60% of the cost of services and the member is responsible for 40%. These policies have the lowest monthly premiums but the highest out-ofpocket costs. Bronze plans are ideal for those who do not usually have high health care costs.

Silver – Insurance typically covers 70% of the cost of services and the member is responsible for 30%.

Gold – This level typically covers 80% of the cost of services and the member is responsible for 20%. Monthly premiums are usually higher, but the out-of-pocket costs are low.

caringvoice.org • Fall 2015 • Managing Stress

Platinum – Insurance typically covers 90% of the cost of services and the member is responsible for 10%. Platinum plans are not available in every area and have the highest monthly premiums; however, the out-of-pocket costs are the lowest.

Catastrophic plans are also available; however, these plans offer limited coverage only.

Plans purchased through the Marketplace are based on co-insurance responsibilities. Since the member will be responsible for a percentage of the total cost of services received, it benefits members to: 1. Stay up-to-date with preventive services offered

These services are offered at no cost as required by the ACA. By utilizing preventive services, individuals can catch issues that arise early.

2. Seek second opinions before agreeing to high-cost services

If your doctor recommends additional tests, make sure you know why the tests are needed. 3. Shop around for the lowest price on standard services

Most insurance policies can tell you the average price of most services,

Marketplace that way you can ensure you aren’t being overcharged. There are also websites, like newchoicehealth.com, that let you compare the costs for many services in your area, nationwide.

Out-of-Pocket Maximums Unlike traditional individual insurance policies, all ACA-compliant plans are required to have an out-of-pocket maximum. This is the amount that, once met, will signify that the member no longer has any responsibility toward services received as the insurance company will pay 100% of the costs. For plans purchased through the Marketplace, the out-of-pocket maximum applies to prescription and medical costs combined. For 2015, the highest out-of-pocket maximum is $6,600 for an individual plan and $13,200 for a family plan.

Essential Health Benefits All plans offered through the Marketplace are also required to offer coverage for certain services; these required services are known as essential health benefits. They include: • Ambulatory patient services • Emergency services • Hospitalization (including surgery) • Pregnancy, maternity, and newborn care

• Prescription drugs •

Rehabilitative and habilitative services and devices (to help people with injuries, disabilities, or chronic conditions)

• Laboratory services • Preventive and wellness services (including chronic disease management) • Pediatric services for children 18 and under (including oral and vision care)

Help Paying for Costs There are two types of subsidies available directly through the Marketplace that can help lower an individual’s monthly premium and/or out-of-pocket costs. In order to qualify, an applicant must qualify based on household size and income. Advance Premium Tax Credits (APTC) – Eligibility for this subsidy will allow a member to reduce their monthly premium. In order to qualify, an individual’s household income must fall between 100 – 400% of the Federal Poverty Level (FPL). To put this in perspective, an individual could make $11,770 - $47,080 per year or a family of three could make $20,090 - $80,360 per year.

It is important to remember that this subsidy will be offered based on an • Mental health and substance abuse individual’s estimate of their expected income for the coming year. Be as disorder services (including accurate as possible when estimating counseling and psychotherapy)

household income and report changes to the Marketplace right away. Cost-Sharing Reductions (CSRs) – Eligibility for this subsidy will allow a member to reduce the amount of their deductible as well as their overall outof-pocket costs. In order to qualify, an individual’s household income must fall between 100 – 250% of the FPL. This means an individual could make up to $29,425 a year or a family of three could make up to $50,225 a year.

It is important to remember that if an individual qualifies for CSRs they must enroll in a Silver level plan (the only exception is for those who are American Indian or Alaskan natives). Basically, this means that an individual will receive Gold or Platinum level coverage at a Silver level price. If you are interested in applying for health coverage through the Marketplace, visit www.healthcare.gov during the Open Enrollment Period. To see if you qualify for a Special Enrollment Period, select your state. If you have a CVC-supported diagnosis you can contact a case manager by calling 1-888-267-1440 to see if you qualify for alternate coverage services, which will provide stepby-step assistance through the Marketplace process. All CVC alternate coverage case managers are designated as Certified Application Counselors through the Federal Marketplace.

OPEN ENROLLMENT PERIODS

January 1 – March 31

October 15 – December 7

Medicare General Enrollment Period to elect Original Medicare if your Initial Enrollment Period has already passed

Medicare Prescription Drug Plan Open Enrollment Period to add new coverage or change your existing Prescription Drug Plan or Medicare Advantage Plan

November 1 – January 31 All Year Private Health Insurance Medicaid Enrollment Open Enrollment Period Period to elect coverage through a Federal or State Marketplace or directly from a private insurance carrier

Outshining

LGS

Julie Neal hopes her daughter Bailey’s experiences with Lennox-Gastaut syndrome will shed light on this severe form of childhood-onset epilepsy.

ailey was born in January 2001. I thought she was the best baby ever. She was beautiful and doing everything normal. Then one morning in June, when she was six months old, I had her on the changing table and all of a sudden her breathing changed. It was like she had the hiccups, but she was staring at the wall and her arms and legs were moving together in an outward motion. It lasted about 30 seconds, then she stopped and cried. A few days later while we were driving I heard Bailey making the same noise she had made during that strange episode. I pulled the truck over to check on her and she was doing the same thing. I called the doctor and he sent us to the hospital for an electroencephalogram (EEG). The results were fine because nothing happened during the test. The doctor advised us to video her so he could have something to reference. Bailey was in her baby swing on a Friday night when she had another episode. I got it on video and planned to show the doctor that following 36

Monday, but the next day, while we were at a festival, she had a full-fledged seizure. God was watching over her, though, because there were three nurses nearby. All three nurses came over and started caring for her. The seizure lasted about three and a half minutes. It was by far the worst and the longest.

“She’s definitely taught me more than I will ever be able to teach her.” The nurses wrote down all of her vitals with a description of what happened. When we got to the hospital I was able to provide the video from the night before and the nurses’ notes from that day. Doctors started her on seizure medication. In hindsight she was probably having seizures long before we ever saw one. We followed up with a neurologist in Fort Worth, Texas who continued

caringvoice.org • Fall 2015 • Managing Stress

to see Bailey for about two years. She had multiple types of seizures: grand mal, myoclonic, and atonic. Along the way she’s had other types as well. We went through many different medications trying to control them. After a couple of years, her doctor thought it was best that we see an epileptologist — a neurologist who specializes in the treatment of epilepsy. In 2003 we tried the ketogenic diet for about six weeks. It’s a special high-fat, low-carb diet that helps control seizures in some people. She was in the hospital for about eight days to get started. We had to weigh her food down to kilograms. It was life changing for the entire family. Her seizure activity actually increased while on the diet, though. So the neurologist took her off of the diet and we changed medications again. The next recommendation was a vagus nerve stimulator (VNS). It’s a device similar to a pacemaker implanted under the skin near your collarbone or on your skull that stimulates the vagus nerve with pulses of electricity. It trains the brain to not have seizures.

In Your Words At the time, I considered it an invasive surgery for a 2½ year old and couldn’t put her through it. Sometimes as a parent you question whether or not you’re doing all that you could be doing for your child. I started wondering if we should seek another opinion. In 2006, right after she turned five, I researched top epilepsy clinics around the U.S. and found a hospital in Houston. I wanted them to start from square one with a fresh look. Their findings were consistent with our original neurologist, which was reassuring, but I had also been hoping they would find something different that could be fixed. While we were there they performed an MRI. She hadn’t had one in a couple of years. Afterward they told us she had scar tissue on her brain, which was the cause of her mental disability. It was the first time we were made aware of this. She started off so normal, but every year that passed there was more and more delay. I thought the seizures were causing the delays, but they weren’t. Doctors don’t know what caused the scar tissue; more than likely she was born with it. This was also the first time we heard Lennox-Gastaut syndrome (LGS) was a possible diagnosis. After returning home we learned our primary neurologist was questioning LGS as a possibility as well. At that point, though, Bailey wasn’t experiencing the right type of seizure activity to confirm a diagnosis. LGS has a very specific pattern of spikes and waves as seen on an EEG, but it also encompasses cognitive

impairment and that’s why doctors were considering it. It was June of 2007 before we got an official LGS diagnosis. I told our neurologist we were ready to try VNS and it was the scariest thing I’ve ever done. Bailey has been free of grand mal seizure activity for over five years now. She still has atonic seizures, also known as drop seizures, and myoclonic seizures, which appear as brief, sudden jerks. On a bad day she might have one or two atonic or myoclonic seizures, and they’re strong.

cannot communicate to us what she needs or what she wants or what she feels. Maybe that’s where some of this stems from — the frustration she must feel from not being able to communicate. Her poor little body has gone through so much. It’s hard because she doesn’t always know the words to be able to relay what she’s feeling.

Although her speech is like that of a two-year-old, she can still get her point across and she comprehends at a higher level. For example, she had a profound connection with my Dad, who passed away in 2007. When she was little he jokingly taught her the word “nincompoop.” She couldn’t even say “Mama” yet, but she could say that, and to this day she still uses the word when picking on someone. It’s her favorite word and one of the few that she Above: The Neal family. Previous page: Bailey and her mom, Julie. has retained over all the years. It makes me smile that a little If she’s standing and has an atonic memory of my Dad, her Papa, is still seizure her feet go so far off the ground with her. She still walks by a family her knees will hit her forehead. It’s not portrait with him and says “Ahhh Papa” even a second long, but it’s long enough like she understands he is no longer to force her body into a ball and throw her down. She’s had over 100 stitches with us. from having these types of seizures. She’s also broken her arms, her ankle, and her nose. Even though she wears a protective helmet, it doesn’t always protect her teeth when she hits the floor. Broken bones and teeth are something kids with LGS have to endure. Bailey is 14 now but developmentally she’s somewhere between two and four years old. As she’s gotten older, she’s also developed behavioral issues, which is common among people with LGS. It goes back to the fact that she

Our reality is that more than likely I will survive Bailey, and that’s a hard realization. It’s scary. I fear that the grand mal seizures will return and lead to sudden unexplained death in epilepsy (SUDEP), which is one of the main causes of death for people with LGS. In addition to all that they have to go through, it’s sad to think that people with LGS are at a high risk of SUDEP and a high risk of injury from traumatic falls that sometime prove to be fatal. Continued on pg. 38 37

In Your Words It’s a matter of trying to prevent the things that could possibly happen. Every LGS child has so many different scenarios and unfortunately there isn’t much information out there. I’ve never met a caregiver or someone else with LGS in person, but the LGS Facebook page (through the LGS Foundation) is a fabulous way to connect with others and learn. When you’re having a terrible day these people understand. They know what you’re going through. It’s incredible to know you’re not alone. I recommend caregivers join the Facebook page and find someone who is living it. Don’t believe everything you read on the Internet unless it’s from a credible source. The LGS Foundation website offers legitimate answers to your questions. It’s important to remember that one person’s experiences compared to another are going to be different and you have to find information that’s pertinent to you. Raising a child with LGS takes a village. My 17-year-old son, Hudson, is my rock. He often gets Bailey off the school bus and stays with her until my husband and I get home from work. He takes on the responsibility because he knows that we need his help. There are times when I have to call in the troops. Bailey’s grandparents help out when they can, and a friend’s daughter watches Bailey for me in the summer. Sometimes I wonder how we will do it in 20 years. Those are things I have to think about, but for as long as possible, I want her living with us. Hudson says Bailey will live with him one day, and my other daughter, Addison, who is 10, recently told her best friends that she and Hudson have to live next door to 38

one another when they grow up so that she can help him take care of Bailey. Her friends agreed that they would all live near each other so that they can all take care of Bailey. It’s good to know our village will always carry on. I try not to put a label on Bailey. She’s more than LGS. She has likes and dislikes and her own personality. She loves babies. That love that we feel for our own children, she feels for all children. She loves music; her face just brightens when a good song comes on. Although she can’t sing the words, she gets the melody and pitch, hums the tune, and knows the songs. It’s absolutely incredible. I recently took Bailey to a Miranda Lambert concert. She was glowing. There were people sitting near us that kept watching her. Toward the end of the concert I unlocked the brakes on her wheelchair and let her wheel around and “dance” in the aisle. As soon as I did, the couple came over, grabbed her hands, and started dancing with her. The woman told me she had never seen so much joy coming from one human being. Then another little girl came over and sat in Bailey’s lap and danced with her. And another child came over and danced, and another. That’s the effect she has on people. It’s moments like those that outshine the lows. It’s those moments that keep us all going — the incredible joy there. We’re fortunate to have Bailey. She’s definitely taught me more than I will ever be able to teach her. This is what God gave us. We’ll keep educating ourselves about LGS, deal with it the best we can and make the best life possible for all of us.

caringvoice.org • Fall 2015 • Managing Stress

One of Bailey’s greatest joys is holding a baby. Photos courtesy Neal family.

Taking Precautions Common seizure-related injuries include bruises, lacerations, bone fractures, burns, and, in some cases, drowning. Here are some things you can do today to reduce the risk of injury: Avoid clutter in your house, and add padding to any sharp corners. Keep lids on hot drinks, and use only the rear burners when cooking on a stove top. Avoid lighting candles, swimming, or climbing ladders unsupervised. Routinely check in with neighbors, friends or family that you trust. It may be helpful to give them an extra key to your home. Source: “Seizure Safety and Seizure Risk: From First Aid to SUDEP” Daniel Friedman, MD, Assistant professor of neurology; NYU Comprehensive Epilepsy Center

to doing all you can. Want to find ways to get back some of the things you may have missed since your diagnosis? Living PAH can connect you to a growing community of support designed to help you get the most from your care. Visit LivingPAH.com today. You’ll find relevant information about your condition; healthy, low-sodium recipes in our Living PAH Kitchen; and tips from other patients and caregivers who have traveled a similar path. And if you choose to enroll, you’ll receive additional tools and resources, a set of low-sodium recipes, and a monthly newsletter with helpful lifestyle tips.

Yes. It’s time to pursue your goals.

Caring Voice Coalition 8249 Meadowbridge Rd Mechanicsville, VA 23116

Caring Voice Coalition, Inc. (CVC) is a national 501(c)(3) non-profit, charitable organization that improves the lives of patients with chronic illnesses. We do this by offering financial, emotional, and educational support.

Our Programs • Financial Assistance • Alternate Coverage • Therapy Appeals • Social Security Disability • Patient Education

T he D i s e a s e s We Supp or t To best serve our patients and expand our reach, CVC's list of supported diseases and chronic illnesses is always growing. To see a complete list of disease funds, as well as links to helpful resources, please visit www.caringvoice.org or scan the QR code to the right.

How We He lp CVC’s programs are a direct response to patient needs. In addition to medical and financial challenges, chronically ill patients face significant obstacles to starting and remaining on therapy. Our programs remove those obstacles.

1-888-267-1440 CVCInfo @ caringvoice.org www.caringvoice.org