Taking Charge of Your Health - Community Magazine, Summer 2015 by Caring Voice Coalition

COMMUNITY Volume 4 • Issue 2 • Summer 2015 • The Quarterly Publication of Caring Voice Coalition, Inc.

Your path to a healthier, happier you! Prep your kitchen for clean eating success Finding strength through support groups Living with Gaucher's disease

+ Plus Fresh summer recipes 6 steps to estate planning Summer health tips ...and more!

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

SUMMER 2015 Taking Charge of Your Health

30 minutes

34 29

4 Contributors’ Page 5 Editor’s Letter 6 President’s Letter 14

9 CVC Close Up

CVC Marketing Assistant Charlie O'Donnell explains how marketing plays a key role in providing people valuable information and opportunities to connect and engage.

11 Defining The New Normal

16 Patient Association Profile

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

Rosina Papantonio, National Gaucher Foundation marketing and communications director, details how the organization raises awareness and helps patients and families.

12 Newsmaker Q & A

Gerilynn Connors, clinical manager of respiratory care outpatient services at Inova Fairfax Hospital, discusses the importance of pulmonary rehabilitation as a standard of care for people with lung disease.

14 In Your Words

was 20 years away. She took part in the clinical trials for the first therapy and is here to say you can live a full life with a rare disease.

When Marie Babel was diagnosed with Gaucher's disease at just 5 years old, treatment for the genetic disorder

18 Taking Charge of Your Health

29 Summer Recipes

Seven delicious recipes plus tasty tips and immune-boosting veggies.

33 Summer Health Tips

Summer's here! Get out and enjoy the sunshine and warm weather, but do so safely. Community gathered tips to beat the heat.

34 Support Groups Provide Strength

Debbie Drell, senior director of volunteer services for the Pulmonary Hypertension Association, offers insight about the emotional and educational benefits of support groups.

Community explores ways that you can make a difference in your health and total well-being through physical activity and mind-body techniques.

26 Eat Cleaner

Chef Mareya Ibrahim, also known as "The Fit Foodie," provides a steer clear list and 10 ways to prep your kitchen for clean eating success.

37 Legal Corner

CVC Senior Patient Advocate Lauren Patrizio, Esq. provides six simple steps to estate planning.

Staff

Publishers

Publishing Editor

Pamela Harris pharris@caringvoice.org Samantha Green sgreen@caringvoice.org

Robin Lawson 888.267.1440, ext. 188 rlawson@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.

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

Graphic Design Renita Wade rwade@caringvoice.org Charlie O'Donnell codonnell@caringvoice.org

Please recycle this issue. Cover Photo by Charlie O'Donnell

Contributors Marie Babel When Marie Babel was diagnosed with Gaucher's disease at five years old, treatment for the rare genetic disorder was 20 years away. She has never let the disease define her happiness and she's never shied away from sharing her story. Babel loves the beach and anything to do with the water, and also enjoys music, art, cultural festivals, and traveling.  Colleen Brunetti Colleen Brunetti is a certified educator and health coach. Diagnosed in 2008 with a critical lung disease, Brunetti also works as a patient advocate and leader in her patient community. In 2014, she published her first book, Defining Your New Normal: A Guide to Becoming More Than Your Diagnosis, written to inspire patients of all walks to take control and guide their own health outcomes. Gerilynn Connors, BS, RRT, MAACVPR, FAARC Gerilynn Connors is clinical manager, Respiratory Care Outpatient Services, Pulmonary Diagnostics & Pulmonary Rehabilitation at Inova Fairfax Medical Campus in Falls Church, Va. She also chairs the American Association for Respiratory Care's Continuing Care/Rehabilitation Section and is past president of the Virginia Association of Cardiovascular & Pulmonary Rehabilitation. Debbie Drell Debbie Drell is senior director of Volunteer Services at the Pulmonary Hypertension Association (PHA). She is charged with the sustenance and expansion of the grassroots and volunteer spirit within PHA and working to provide support for special populations in the pulmonary hypertension community specifically working with support group leaders and volunteers. She also serves as a member and chair-elect of the Public Advisory Roundtable of the American Thoracic Society. 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, Inc. and the patented co-creator of the eatCleaner®, eatSafe™ and eatFresh™ line of all natural and organic products. She is a contributor to The Daniel Plan: 40 Days to a Healthier Life by Rick Warren, Dr. Daniel Amen and Dr. Mark Hyman. Rosina Papantonio Rosina Papantonio has been involved with the National Gaucher Foundation, Inc. (NGF) since 1994. As the organization's marketing and communications director, she assists with public relations, advertising, graphic design, and website management. She says her career with the NGF has been one of the most rewarding jobs of her life. Lauren Patrizio CVC Senior Patient Advocate Lauren Patrizio, Esq. assists CVC patients in navigating the various stages of the Social Security disability application process. She also drafts appeals for insurance coverage of specialty medications and provides support to CVC’s appeals and disability team. A graduate of Virginia Tech University and Roger Williams University School of Law, she is a member of the Virginia State Bar. In her free time, she enjoys making chocolate-covered strawberries for her coworkers and running, swimming, and biking. Jessica Scalin Jessica Scalin is a lifestyle and meditation coach, a lululemon ambassador and has been recognized as one of the top yoga instructors on the East Coast. Scalin has a pre-med degree and an athletic background in track, cross-country and dance giving her extensive knowledge of anatomy and physiology. With this background she understands the science behind yoga’s healing abilities. She is passionate about transforming each individual’s life into one that is happy and healthy. 4

caringvoice.org • Summer 2015 • Taking Charge of Your Health

Community Editor’s Letter Robin Lawson

In the past when someone told me to "take care", I always considered it a pleasant farewell. Not much more. But the other day when a friend chirped the phrase, it struck me differently; it resonated, tugging at my subconscious like my children used to tug on my fingers or pants leg when they needed and deserved attention. It’s like my health was saying, “Listen up lady, you need to start taking notice.”

I’m attributing my keener sense of awareness to the time spent working on this issue, which focuses on taking charge of our health, and taking care of ourselves. Like all moms I know, I’ve tried to delicately balance my children’s well-being on what I've been taught are the three pillars of health: a nutritious diet, a good night’s sleep, and some form of physical activity, whether it be sports or playing in the yard. They’re now 12 and 15 and I still encourage them to unplug from technology and get moving. I’ve come to admit, though, I haven’t always encouraged myself to do the same, at least not to the extent I should have. And that's going to change.

Slowing sinking into a sedentary rut isn’t that uncommon, whatever the reason might be, but you don’t have to remain stuck. The first step in achieving success in any endeavor is the decision to try. That includes paving your path to a healthier lifestyle. As so many people I interviewed for this magazine reiterated, it truly takes a positive change in mindset before a positive change in behavior will begin, and before positive results will be seen.

Remember, you can be well — in mind, body, and spirit — even when you have an illness. And it should be a priority. On the following pages you’ll find strategies to achieve wellness, in one form or another. Although they might not all work for you, we hope that you’ll find at least one that can spark a positive change (try the 30-minute routine on page 20). We hope you’ll gain strength through increased physical activity, whether it’s walking, yoga, or taking a water exercise class. We hope you’ll exercise your playful spirit and find an activity you enjoy. We hope you cultivate peace of mind, knowing that you’re in charge of your well-being. Start slow. Remain steadfast. Set small, attainable goals for a big, healthy finish. And celebrate. Celebrate each and every achievement toward that end. We’ll be celebrating with you and want you to share your victories with us. We’ll be continuing our health coverage in the fall issue — there’s so much more that we can do for our overall health! — like managing stress — so share your tips and ideas with us and let’s get healthy together. In the meantime, take care.

“What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.” ~ Ralph Waldo Emerson 5

President’s Letter Pam Harris It seems like just yesterday that I was a healthy, vibrant 40-year-old woman doing my dream job within the nonprofit world. I always thought I ate healthy, slept well and exercised adequately, but I honestly didn't have a clue about what I needed to do to improve my health. I worked myself ragged and felt guilty if I took time off to spend with my family, go on vacation or simply go sit outside to enjoy the fresh air and sunshine. The weekends were my time to rest and recover from the previous week. I needed a wake-up call. And I got a big one — breast cancer!

Looking back, I can now clearly see how I was the biggest contributor to making myself sick. I'm now just coming out of "year 5" of being a breast cancer survivor. I had to learn the hard way how to slow down, breathe and relax. I learned how to stop trying to make everyone else’s problems a priority, and started focusing on my own health and happiness. If I could go back 10 years, I'd tell anyone who would listen to slow down, put your health and your family first and stop focusing on the unimportant things in life. Here are a few ways I chose to reclaim my health:

• Be your own advocate. When people take an active role in their own care, research shows they fare much better. Don’t be afraid to ask for what you need while respecting the needs of others, and find a team of doctors you can trust. If you feel you can't trust them, it’s time to look for another doctor. • Take your medication. Sticking to a medication schedule takes discipline, especially if you’re experiencing nasty side effects. But the more you do it, the easier it gets. Take your medication at the same time each day and keep it in the same place. • Don’t let your disease define who you are. Being diagnosed with a chronic illness can be hard to accept initially, but it does not mean that you stop living or thinking about your future. Don’t ever forget that you are the same person you were before your diagnosis. Live fully in the moment and enjoy time with your friends and family.

• Hug someone you love deeply. When you hug someone you love, your body releases feel-good hormones that ward off depression. There is nothing better in the world than hugging my granddaughter, Abigail – a simple hug from her makes me feel good for days. Thank you for being a part of the Caring Voice family. I know you will enjoy reading the many inspiring articles within this edition. I hope your summer is off to a great start!

caringvoice.org • Summer 2015 • Taking Charge of Your Health

CVC COMMUNITY

We’d like to hear from you! Email your feedback and questions to: magazine@caringvoice.org I recently received my first issue of Community and reveled in the stories of people who continue to live their lives “one day at a time.” I can’t stress enough the importance of such a mental attitude.

—— Joseph Pitea, Sr. Hawthorne, New Jersey In early 2014 my health was in a major decline. After living with pulmonary arterial hypertension (PAH) for 10 years, I couldn't see the light at the end of the tunnel. My doctor had an answer, a new drug that was just released. I thought it would take months to get started, if I even qualified to get the drug. The nice people at CVC called within a week and got financial assistance approved for me. I started the drug two weeks later. This has changed my life. I can do things I haven't been able to do in years. Thank you so much CVC for your continued help and support for 2015. There have been many peaks and valleys with PAH and I know there will be more. My best advice is to not let the disease control you. You have the power to keep a good positive attitude and stay involved in your treatments. Don't be afraid to say no if something is not working and always keep moving. Surround yourself with good doctors, and loving family and friends. Never lose hope or faith.

—— Patricia Patterson St. George, Utah

Readers’ Comments

CVC is the most helpful organization ever! Being hit at 37 years old with a diagnosis that is progressive, and ultimately terminal (pulmonary hypertension), is overwhelming to say the least. The price tag for the medications is so high and is not covered completely by insurance, but it’s one thing that I didn't have to face thanks to the CVC financial grants. I've been amazed by CVC’s help and have never experienced anything like it as a patient and a healthcare professional (nurse practitioner). Most of the time there is so much red tape to get through and lack of personal contact, but CVC is different. There is a person on the other end of the phone that really wants to help you. They know your name, diagnosis, and needs. Thanks for all your help, not just for me for but for so many others!

—— Lisa Thornton Marietta, Georgia The story “In Your Words: Brothers in Arms” in the spring issue of Community really helped me. These brothers spoke about the issues of their illnesses (sarcoidosis and pulmonary hypertension), and how they’re not giving up. I’m so glad they were willing to share their stories. When I opened the magazine and started reading it, I was inspired. I’m so grateful for all of you. Thank you for all your help, and thank you for the magazine.

—— Ginger Holman Volcano, California

I want to thank CVC with all my heart. I was recently prescribed a medication to combat the idiopathic pulmonary fibrosis (IPF) I was diagnosed with last year. Being retired on a fixed income, and with this medication costing about $7,000 a month, I could not acquire it without the financial help provided by CVC. I will say my thanks by supporting CVC and participating in any support group I can find in my area.

Thank you CVC for all the wonderful things that you do for everyone. We could never thank you enough for all that you have done for us! I wanted to say how much I enjoyed the "In Your Words” spring 2015 edition that your amazing staff put together. It’s inspiring to hear how people were diagnosed and have fought through their own rare disease issues just as I have. Thanks to all of you at CVC for helping me with my insurance appeal. I wouldn’t be home infusing for my Alpha 1 Antitrypsin deficiency without it.

—— Jack Zettler Stow, Massachusetts

—— Erin Wisch Fort Atkinson, Wisconsin 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:

Charlie O’Donnell CVC Marketing Assistant

grew up in Michigan and moved to Virginia when I was 18. I’ve been studying marketing at Virginia Commonwealth University (VCU) and expect to graduate this year. I joined Caring Voice Coalition (CVC) two years ago. Coming to CVC has given me a fantastic opportunity to expand my skill set in marketing, and I’ve picked up plenty of additional photography and design knowledge while working here, too. I’d had a hand in designing brochures for CVC before, but this past spring’s issue of Community was the first full magazine I’ve designed. It went surprisingly smooth! Growing up I always wanted to be an artist, and graphic design is a great way for me to exercise my creative side. In high school I picked up film and video editing and I used to make fake commercials and comedy shorts with my friends, which was always fun. When I took a marketing class in college it sparked my interest and spurred me in that direction. I enjoy marketing because it can present people with opportunities that they may have missed out on otherwise. I have the biggest hand in providing the educational news from CVC, creating marketing materials and informational resources for print and online. I find it enjoyable and rewarding to create items that in turn help someone else. One thing that I look forward to every time I create a post on Facebook or Twitter is broadening CVC’s reach, spreading the word, and further raising awareness for both us and our supported diseases. We are always happy to hear from patients! I want them to know that there are real people working here every day, and those real people love being able to change lives. Everyone who works here really enjoys what they do. Any time I get a Facebook message, tweet, email or phone call, I immediately share it with the rest of the company, and it brings a smile to everyone’s face. We’re always starting new projects that I hope will encourage people to engage with us. I love when people leave comments and interact with us on our social media pages. When I see a new comment, like, share, or retweet on a picture I’ve taken, an illustration I’ve created, or something I’ve designed it’s like when you’re a kid and your parents stick one of your drawings on the fridge.

Two of CVC’s core values — passion and commitment — are big for me. I did a lot of volunteer work when I was younger working at soup kitchens and other charities. It always feels good to help others who are struggling. I used to help organize and coordinate events for my church’s youth group, and I enjoyed counseling youth at summer camps, too. I think taking an active role in your health is important. You want to live the best and fullest life possible so it’s important to get all of your facets in order to improve your overall well-being. Exercise is an interesting topic for me because I wasn’t a huge fan of exercising growing up, but as I got older I realized that the issue was that many of the exercises that I had tried to get into were things that I didn’t enjoy and I didn’t realize there were exercises out there that are actually fun. So, you’ve just got to find what’s right for you. I’ve recently gotten back into practicing parkour after recovering from an ankle injury. For those who have never heard of parkour, it’s kind of like obstacle course running — track and field mixed with rock climbing and extreme sports.

“We’re always starting new projects that I hope will encourage people to engage with us.”

Community magazine is a lot about motivation, inspiration, the will to never give up, and encouragement to keep going. I create a series of graphics for our social media pages that we like to call “Words of Encouragement”. They are inspiring visual quotes that help to encourage and motivate. I think sharing your stories, and the “In Your Words” features, is important to that end as well. It definitely helps patients know that they’re not alone. I enjoy getting up and doing what I do every day. I like working on new projects, creating new things and sharing them with people. I like being around people who enjoy helping others. I’m always trying to come up with new ways to do things, trying to come up with new things for patients to enjoy, and new ways to present our services. People don’t always consciously think about it, but everything you see about a company, someone created it. In a marketing sense, that’s what I do for CVC. 9

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Defining The New Normal:

Baby Steps to Big Changes This column is the third 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

hat is “wellness”, exactly? The word probably means something a bit different to each person. It may be a certain way of eating, or it might mean exercise, such as running in a race, or hitting the gym, or taking a walk every day. But what happens to those of us for whom the more traditional definitions of wellness seem out of reach? What happens to those of us who battle chronic illness? Can you be well even though you are sick? This is a question I wrestled with a couple of years ago after I was diagnosed with pulmonary hypertension (PH). While the magazines touted bikini workouts and there always seemed to be a new diet going around, I was lucky if I could get up a flight of stairs without complete dizziness, or find the energy to cook a well-balanced meal at the end of a long day. Yet, I still longed to feel better. To be honest, I had let my illness define me for a while. I didn’t feel good when I tried to exercise in my old ways, so I didn’t exercise at all. I “ate my feelings”, indulging too often in what should be occasional treats. While my illness made me feel bad, I wasn’t doing my body any favors to help fight it. Eventually, I knew I had to take control. Ever so slowly, I began the path back to wellness, even though I was still very much sick. You can’t cure a major illness with diet, yoga, and happy thoughts! But you can feel better overall so that you are as strong as possible while you fight your illness. Along with diet, I also slowly started trying to work out. First, I started on the Wii Fit system. I promptly landed on the couch while the room spun. My heart tried to beat an escape route through my chest. But after the room stopped spinning I got up and tried again. And again. Next, I tried water aerobics. Barely 30 years old, I joined the senior citizens class. I had to wear a floaty because I lacked the strength to tread water. But I was there… splashing, gossiping with my new friends, and loving it. Each day I tried to increase my efforts just a little bit. Eventually, I was able to blow every expectation I, or my doctors, had for my physical abilities right out of the water (no pun intended!), and I still do to this day. Once I became an Integrative Nutrition Coach, I learned that this path to wellness involves more than just what you

eat and how you exercise. Sure, those are the really big ones. But you also have to nurture your spiritual practice, try creative activities, seek time with friends and family… your wellness depends on all of you being attended to. Ask yourself this: What is it I need to do to start to feel better? It turns out, no matter what your individual answer is, there is a pretty simple formula for success. your doctor on board with your plans. It’s always 1 Get advisable to consult your physician before making changes to your activity level or tweaks to your diet. You want to be sure these changes are compatible with your ability level and treatment plan.

the support of friends and family. Choose 2 Enlist people who will support your efforts and maybe even

hold you accountable. The team approach really helps with follow-through.

that a little bit of safe discomfort is okay. 3 Understand It’s not easy to make changes. You might be a little more tired or feel a bit hungry or have cravings. But pushing through these blocks will help ensure success.

small, start slow, but stick to it. You likely didn’t 4 Start come down with a diagnosis overnight, or become

out of shape in a week. It’s okay to take a significant amount of time to bring the body back into balance. Have patience and grace with yourself.

on the victories. Be they big or small, you want 5 Focus to celebrate your success. Maybe you’re cutting out soda

and you only drank one can instead of two. Victory! Maybe you want to move around more and you made it three more minutes on the treadmill than last week. Victory! Remember all these little successes are going to add up to big changes, and big payoff.

That’s it! Implement these ideas. It turns out it’s true – you can truly be well even though you are sick. You may not be cured, but you can define a life you love by taking care of yourself. You may have a major diagnosis, but you can still create your world to be full of self-care, contentment, and the strength to weather the storms. All it takes is that single first step. 11

NEWSMAKER: PULMONARY REHABILITATION Gerilynn Connors, BS, RRT, MAACVPR, FAARC

Pulmonary Diagnostics, Pulmonary Interventional Program & Pulmonary Rehabilitation

Inova Fairfax Medical Campus Falls Church, Va. 703-776-3070

Community recently spoke with Gerilynn Connors, clinical manager, respiratory care outpatient services, Inova Fairfax Hospital, about pulmonary rehabilitation as a standard of care for people with lung disease.

“

Who can benefit from pulmonary rehabilitation? How can a patient know if pulmonary rehabilitation is right for them? Pulmonary rehab is a standard of care for any individual with chronic lung disease. A few examples are pulmonary hypertension (PH), idiopathic What is pulmonary rehabilitation? pulmonary fibrosis (IPF), sarcoidosis, On the basis of current insights, the chronic obstructive pulmonary disease American Thoracic Society (ATS) (COPD), and emphysema. It is also and the European Respiratory Society a standard of care for lung transplant (ERS) have adopted the following new patients. It’s important for a patient to realize definition: “Pulmonary rehabilitation is a comprehensive intervention based on that your lungs can deal with a lot of a thorough patient assessment followed abnormality — I like to refer to it as by patient-tailored therapies that “insult” — and as the lungs deal with include, but are not limited to, exercise insult you start adapting your lifestyle training, education, and behavior to your ability to breathe. For instance, change, designed to improve the say it was the flu you had, or a sore back physical and psychological condition that kept you in bed for a few days, and of people with chronic respiratory then suddenly you’ve got shortness of disease and to promote the long- breath and your lung disease, which term adherence to health-enhancing didn’t seem to be a problem before, is now really bad. Your body, your lungs, behaviors.” From a patient perspective, and your lifestyle will adapt to your comprehensive pulmonary rehab symptoms. It happens gradually, over provides a person the opportunity to go days and months and years, and you from inactivity to activity and from don’t realize it. The patient has to take hold of their being an observer of life to an active health. In pulmonary rehab, we would participant of life. rather see patients earlier in the course of their The ultimate goal is to provide the disease to be able to give them the tools they need patient with the education they need to improve their quality to best manage their disease with the of life and maintain it, despite a chronic disease caregivers that they have, from their that could be progressive. doctors to their loved ones. From that standpoint, the patient needs to question

”

caringvoice.org • Summer 2015 • Taking Charge of Your Health

their doctor and request pulmonary rehab, then let us do the assessment and determine if the program is appropriate for them. Although you need a physician referral for pulmonary rehab, it doesn’t have to come from the pulmonary physician. A primary care physician or internist can refer patients as well.

What will patients learn in pulmonary rehabilitation? Comprehensive pulmonary rehab includes a thorough assessment, education, therapeutic exercise, psychosocial intervention, and longterm adherence. It always starts with a comprehensive evaluation by a respiratory therapist or nurse in order to put together an individualized program tailored to the patient’s needs. While each program is individually tailored, there’s also basic information that all patients need to manage their symptoms and disease. Topics that we train the patient on are: breathing retraining, understanding their lung disease and symptoms, oxygen therapy, relaxation techniques to decrease shortness of breath, nutrition, and how to safely exercise in their target heart rate, among others. We want the patients to understand how their symptoms are related to their disease, what their pulmonary function test results mean in relation to the disease and symptoms, how to prevent infection, and to be educated about daily living. Pulmonary rehabilitation experts know how to work with a patient and coach them on how to handle their

shortness of breath during activities of daily living, such as going upstairs and showering. The six-minute timed walk test gives us a baseline of information to help individualize their exercise program. We look at a lot of parameters when we’re doing that evaluation. The ultimate goal is to provide the patient with the education they need to best manage their disease with the caregivers they have, from doctors to loved ones. We also encourage family participation during the education. For some patients, their loved ones will often want to limit their physical activity. It may take educating that family member for them to understand that with lung disease you’re going to have shortness of breath. How do you handle it? How do you build a tolerance? That’s what pulmonary rehab can do.

What type of exercising is involved? The ATS and ERS state that the principles of exercise for those with chronic respiratory disease are the same for healthy, elderly individuals. Then, it’s individualized based upon their disease process. We have to make sure that when we train someone their exercise regimens exceed their daily life activities. A program can include aerobic exercise, resistance exercises, strengthening exercises, and flexibility exercises with the use of weights, therabands, and other equipment. It’s important to note that exercise won’t change the severity of a person’s lung abnormality, but it

improves cardiovascular function and strengthens muscles, which in turn enables them to function better with the chronic lung disease. Interval training may be needed for some people, which means they exercise for a specified number of minutes and then rest for a specified number of minutes. Or, we might have a person who can do 20 or 30 minutes on the treadmill at their target heart rate. It’s all based on the individual and we will work with that person on the intensity, frequency, modality, and duration of their exercise program. It is our hope that by the end of the program we have increased a person’s strength and endurance. Everyone’s goals are different based on their individual evaluation. The research advancements made in the last 10-12 years on the benefits of exercise among PH patients is amazing. When we started getting PH patients referred to us at Fairfax Hospital over 10 years ago there was very little in the literature about exercise in PH. In 2013 the Journal of the American College of Cardiology published an updated algorithm for PH treatment that states that exercise training as part of rehabilitation is highly recommended. How long does a pulmonary rehabilitation program take? It typically occurs 2-3 times per week over the course of 8-12 weeks. A patient could participate in 36-40 sessions of comprehensive pulmonary rehab.

Photo by Charlie O’Donnell,CVC

Once a rehabilitation program ends, should patients continue the exercises at home? Continuing the training at home is important at some point during the program and absolutely after graduation from pulmonary rehab. If we work with someone only two or three times a week in rehab, we would like to see them exercise ideally up to four times a week, if possible. Once we start working with an individual

it’s important that we monitor their oxygen level, shortness of breath, target heart rate, and other symptoms to see that our exercise training program for increasing strength and endurance is working.

How long have you worked in pulmonary rehabilitation? I started working with comprehensive pulmonary rehab at Loma Linda University Medical Center in California in 1980. I had the privilege of having renowned pulmonary specialist Dr. John Hodgkin as my mentor. I co-authored the only pulmonary rehabilitation textbook, “Pulmonary Rehabilitation Guidelines to Success,” with Dr. Hodgkin and Dr. Bartolome Celli in 1984. It’s now in its fourth edition. What is your main advice for patients with a lung disease? You deserve to have the best quality of life so do whatever it takes to make that happen.

How can patients find a pulmonary rehabilitation program? ÅÅ Pulmonary rehab is often an outpatient program based in a hospital or clinic. Check with your doctor or call your local hospital to see if there’s a program near you.

ÅÅ The American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR) provides resources for patients and information on pulmonary rehabilitation on its website at www.aacvpr.org.

ÅÅ Patients should also refer to patient associations like the Pulmonary Hypertension Association, Pulmonary Fibrosis Foundation, and the Foundation for Sarcoidosis Research for quality information and assistance.

In Your Words:

Full of Life Born with Gaucher’s disease, Marie Babel explains how she never let the rare genetic disorder define her happiness or stop her from trying new things.

was diagnosed with Gaucher’s disease in 1969 when I was five years old. I was very easy to bruise, had frequent nosebleeds, constantly complained of stomachaches, and my abdomen was larger than it should have been. Doctors didn’t know what it was and didn’t know what to do. I was lucky enough to be referred to the City of Hope National Medical Center in Duarte, California and it was there that they were able to diagnose me. Back then there was no treatment, so about every six months my mom and I would drive a couple of hours away to the medical center where they monitored my platelet count, growth, etc. Gaucher’s is a rare genetic disease in that both parents have to be missing an enzyme. My sister was lucky, she’s only a carrier of Gaucher’s. There are three different types and each affects people in various ways. With me, it attacked my spleen. When my parents decided to move to a small town in Virginia I asked if I could have my spleen removed. I was 11 years old at the time and looked like I was probably six or seven months pregnant. Since my spleen was the issue, I thought “no spleen, no problem.” There were certain restrictions placed on me as a child, certain sports and activities that I couldn’t participate in 14

for fear that my spleen would rupture, so it made sense to me to remove it. I was also extremely comfortable with my doctors at City of Hope and I knew that Gaucher’s disease would be foreign to the doctors in Virginia. Most didn’t know how to pronounce it, much less how to treat it or what to watch for. So, my parents talked with the doctors in California and they said they didn’t see any reason why it couldn’t be done. My disease does

“

not manage me… I manage my disease.

”

When the doctors operated, my spleen weighed five pounds. It was hugely enlarged because of all the lipids that had accumulated. After my spleen was removed, all of the lipids relocated to my liver. But I didn’t learn about this until much later in life. As a result of the surgery, I have a big, upside-down smiley face scar on my stomach. I still proudly wear a bikini, though. If someone asks, I’ve never been afraid to share my story about having Gaucher’s. By being open to sharing my condition with friends, one day one of them called to say they had read an

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article in the New England Journal of Medicine about clinical trials that were being held for a new drug to treat Gaucher’s disease. That’s how I got involved in the trials. That was around 1991. This enzyme replacement therapy was the first treatment ever available for Gaucher’s. In 1993, after the trials, I remained on infusion therapy and stayed on it for about 10 years. When the first oral drug became available, I switched over to that because of venous access issues. It’s a substrate inhibitor, so instead of replacing the enzyme I was missing, it inhibits the lipids from forming. Whenever I received treatment my whole approach was that it was providing my body with something I was supposed to have, so why should I have an adverse reaction? And, I’ve never had any issues with any of the drugs that I’ve been on for my Gaucher’s. Throughout my life I haven’t let Gaucher’s define who I am. My disease does not manage me…I manage my disease. I decided to live my life to the fullest every day that I can, and always try new things. I’ve been zip lining in Costa Rica and I kayak or sail up in Vermont at my sister’s summer place, giving no thought whatsoever to my Gaucher’s. I love the beach and

anything to do with the water. I also enjoy music, art and cultural festivals, and I absolutely love to travel. So, I’ve never had constraints in that way. The biggest challenge to work around was the infusion every two weeks. But thankfully I was able to get home health care. That’s something I recommend patients take advantage of, if they can. With home health care you’re much more comfortable and at ease as opposed to a hospital. The treatments certainly help the symptoms. My liver volume reduced dramatically so in that essence it’s doing its job. I’m so grateful that I don’t have a lot of bone involvement. I have constant generalized abdominal pain, though, and that’s a challenge in itself. You just cope the best you can. I tap on the brakes when the pain is too much, but I never stop. Then when I feel able it’s “pedal to the metal” again. Also I’ve had a wonderful support network. My parents did everything they could to make sure I was getting the best care possible and my older sister was absolutely wonderful. She was very understanding and not at all resentful of any special treatment I received, and that means more than I can put into words. Having Gaucher’s disease has taught me to have courage, endurance and faith. My parents fostered that in me, too. Even as a child I was very competitive and driven. They supported and encouraged me always, but they never gave in. They never just let me win...I had to play by the rules and win fair and square. At age four, I was very eager to start school. My parents supported that and researched until they found a school that would take me, as long as I could pass the admissions test, and I did with flying colors. High school was a different story altogether. I couldn’t wait to get out so I skipped my junior year. I graduated when I was barely 16 and started James Madison University that August. Four years later I finished with my bachelor’s degree and felt like I had a head start on my classmates, and the world.

My main source of inspiration and hope is definitely my family. When I was first diagnosed, my parents were told I probably had 5-10 years to live. It goes to show how little was known about Gaucher’s back then. Treatment was still 20 years away. It breaks my heart thinking about it now, and how worried and awful that must have made them feel. They were just wonderful in how they handled things, though. They were very forthright about my condition and helped me understand it. The doctors at City of Hope were tremendous to me as well. My surgeon took me on daily walks. The nurses said they’d never seen that before. I thought the world of them, and they sure made me feel special. It is amazing to have been able to witness groundbreaking research with Gaucher’s in my lifetime. Raising awareness is very important, and making sure that people know that treatment is available. There are so many options available today that people can successfully manage their Gaucher’s disease. With treatment, you don’t have to be hindered. It’s important to acknowledge your disease and understand your limitations, but do as much as you can to enjoy life. Don’t let it stop you from trying new things and doing whatever you feel will help you live a full life. My advice for others is to be loud and proud; you’re one of a select few after all! Don’t be afraid to share your story, or ask for help when you need it, and don’t be embarrassed to accept support when it’s offered. When you’re extended that hand, take it; accept it willingly and with thankfulness. I think it can be therapeutic to talk about it, too. You don’t need to hold in those emotions and fears. It’s too important to get that out. I’ve been given assistance and a helping hand in ways that I will never be able to repay. My story is the only thing that I have, so if I can encourage, inspire, give strength…do anything for others that will help them in any way, I’m truly grateful and I feel blessed.

Top to bottom: John and Marie Babel in St. Thomas; boating on Lake Champlain with John and brother-in-law Bill Lawrie; Marie and her sister Susan Lawrie in the Virgin Islands; Susan and Marie canoeing; Marie says she’s living and loving life with Gaucher’s. 15

PATIENT ASSOCIATION PROFILE

National Gaucher Foundation, Inc. Rosina Papantonio, Marketing and Communications Director How long has the National Gaucher Foundation, Inc. (NGF) been in existence? What are its goals?

The Berman and Epstein families established the National Gaucher Foundation, Inc. (NGF) in 1984. Along with other families and friends, they raised millions of dollars to help bring the first FDA-approved Gaucher disease drug to market. That drug is still in use today. The NGF is here to help patients find physicians, treatment, financial assistance and information related to all aspects of Gaucher disease. What is most important for people to know about Gaucher disease?

Gaucher disease (Gaucher’s, GD, glucosylceramidosis) is a chronic, progressive, inherited genetic disorder. People with Gaucher disease lack sufficient levels of a particular enzyme called glucocerebrosidase. As a result of this enzyme deficiency, a fatty material, or lipid, accumulates in the body. Lipid accumulation in organs and bones can cause mild to severe symptoms that can appear at any time throughout life, from infancy to adulthood. Gaucher disease can affect anyone. Within the general population, approximately 1 in 60,000 have Gaucher disease. Approximately 1 in 200 are carriers. However, within the Askenazi Jewish population approximately 450 to 500 have the disease and approximately 1 in 10 are carriers. There are three types of Gaucher disease and a variety of mutations. Both parents must carry the Gaucher gene in order to pass it on to their children. Type 1 Gaucher disease is the most common form of the disease and is often referred to as the adult form, although the cause is present from the time of conception. The most common 16

symptoms of Gaucher disease are enlargement of the liver and spleen, anemia, nose bleeds, reduced platelets (resulting in easy bruising and long clotting times), bone pain (bone crises), bone deterioration, easily broken bones, bone infarctions often leading to damage to the shoulder or hip joints, and a generalized demineralization of the bones (osteoporosis). The weakening of the bones can then lead to spontaneous fractures. The course of the disease is quite variable, ranging from no overt symptoms to skeletal problems, liver or spleen damage, bleeding, or other problems. Type 2 Gaucher disease is characterized by brain stem abnormalities and is usually fatal during the first three years of life. It shows no ethnic predilection, and occurs rarely, with an incidence of 1 in 100,000 live births. Type 3 Gaucher disease also shows no ethnic predilection, and is estimated to occur in 1 in 50,000 live births. The neurological symptoms of Type 3 Gaucher disease are slowly progressive and appear later in childhood than the symptoms of Type 2. Neurological symptoms of Type 3 include incoordination, mental deterioration, and myoclonic seizures. Type 1 affects both the general and Ashkenazi Jewish populations, whereas the general population is affected by all three forms of the disease. Currently, there are five treatment therapies available for those with Type 1 Gaucher disease and some are used for patients with Type 3, as well. What services and programs does the NGF offer? Has the need for services and programs grown since the founding of NGF?

Over the years our goals expanded tremendously in terms of providing services and programs to keep up with the needs

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of families and those who had been diagnosed with Gaucher disease. As one can imagine, going from no treatment, other than palliative care, to approval of a viable drug for treatment, lives were changed and with the changes came greater needs, requirements and requests for those affected by Gaucher disease. The NGF has offered financial assistance, mentor and educational programs, as well as membership and volunteer programs. Recently, the NGF developed and offered to the Gaucher community the very first secure, patient-centered Gaucher Network Registry (NGF GNR). The registry enables families and patients to input their own data

“...lives were changed and with the changes came greater needs...”

at their leisure. Additionally, they can pull their own reports. The data not only helps patients, their children and their children’s children, but also researchers and doctors. There are no other Gaucher registries that offer that ability. The data can help researchers find better treatments and hopefully, a cure. For years, the NGF has held various types of events such as golf tournaments, 5K walks/runs, exhibits at the National Museum of Health and Medicine, webinars and dissemination of NGF and Gaucher disease collateral materials.

What are some of the services that you feel are most needed among Gaucher families and patients?

Financial assistance, mentor programs, registries, education, awareness and outreach programs, involvement with legislative issues and keeping the community updated regarding legislation that affects Gaucher and other rare diseases. It is also important that families and patients have the NGF as an unbiased entity to turn to for information and assistance, as well as the latest news and events. This year, on October 18 and 19, in Bethesda, MD, the NGF is holding its 2015 Gaucher Conference and anyone with ties to Gaucher disease in any way is invited. The speakers, agenda, sponsorships and more can be found at www.gaucherdisease.org.

Suzanne Krupskas (left), a Gaucher patient, advocate, and registered physical therapist, receives an award from National Gaucher Foundation CEO Rhonda Buyers. Photo courtesy NGF What do you think the biggest challenges are for Gaucher patients and their families?

Initially some of the most common challenges are accepting the diagnosis, understanding what Gaucher disease is and how it will affect their lives. In some cases parents have a hard time coping with the fact that they passed this disease on to their children. Both parents must have the Gaucher gene. There may be issues related to letting family members and friends know that you or your child has Gaucher disease. It is important to have others

understand that Gaucher disease is not communicable. In addition to the financial aspects that treatment entails, finding an excellent physician and taking the steps to begin treatment and having a place close to home to have therapy of any kind is of great importance. Marriage and having children are also important considerations, as those who are carriers and/or have Gaucher disease might want to consider whether or not their intended partner is a carrier or has the disease. Often, the pain, fatigue and psychological issues related to the disease are an enormous burden to carry. Because presently there is no cure, treatment, if advised, has to be given in most cases every two weeks. This becomes burdensome and interferes with the lives of many of the patients. Since Gaucher disease can cause easy bruising and bleeding and greater chances of broken and fractured bones, some individuals cannot take part in their favorite sport. Children often feel awkward or uncomfortable in school. However, in the last few years, children, teenagers and those in college have used book reports and school projects as a way to educate and make others aware of the disease. What do you think are the most important things for the newly diagnosed Gaucher patients and their families to know?

As is with any disease, those who most aggressively seek information about their own disease will not only be well informed, but able to make educated decisions for themselves and their families. Find doctors who are Gaucher specialists or are familiar with all aspects of Gaucher disease. It is your right to interview the doctor who will be handling your case. The more you learn, the more prepared you are to ask questions should you feel uneasy about any aspect of the treatment you receive. It is always good to get a referral, and the NGF and others you know can help you with that.

Have you seen advancements in research and treatment for Gaucher disease?

Yes. The fact that we now have five different treatments for Gaucher disease is remarkable. In addition to the treatments we now have, we still have to address the neurological aspects of Gaucher disease Types 2 and 3. When there is a small molecule (pill) or other type of drug that can penetrate the blood brain barrier, it would change the course of events for those with Types 2 and 3. Additionally, it could have applications for many other diseases that have neurological-related issues. Having such treatments (drugs) available may also have applications for use in diseases such as Parkinson’s and others. How and why did you become involved with NGF?

I was invited to attend one of the NGF’s conferences. Until that day, I had never met a person with Gaucher disease and was quite moved by many of the attendees. I never forgot it. How can patients and caregivers become involved with NGF?

They can volunteer at any of the NGF’s events, help raise funding for education, awareness and outreach, promote Gaucher disease through school projects, a college thesis, giving brochures to their local churches, synagogues, clubs and community centers. Or, put together events that have a duel purpose. Quite often, those celebrating Bat Mitzvahs and Bar Mitzvahs use the “coming of age” events to raise funds and educate people. The same could be done in conjunction with almost any event, like holding garage and bake sales.

CONTACT NGF National Gaucher Foundation, Inc. 61 General Early Drive Harpers Ferry, WV 25425 800-504-3189 www.gaucherdisease.org ngf@gaucherdisease.org 17

Your Path to a healthier, happier you

When it comes to feeling your best and living the fullest life possible, your health deserves attention — in body, mind, and spirit. Community explores how you can make a difference in your total well-being through physical activity and mind-body techniques. Robin Lawson reports.

TAKE CHARGE of your HEALTH

caringvoice.org • Summer 2015 • Taking Charge of Your Health

TAKE CHARGE of your HEALTH

F YOU’RE LOOKING FOR ways to improve your overall health and well-being, it’s hard to ignore the benefits of staying active. Research has shown that a regular routine of exercise or physical activity helps you maintain weight, strengthen muscle, and improve cardiorespiratory function. It can also help manage and keep at bay a wide range of health problems like type 2 diabetes, heart disease, stroke and metabolic syndrome. And there’s more — regular physical activity is good for your mind, too. In addition to giving you a boost of energy, it can help keep your thinking, learning, and judgment skills sharp, reduce your risk of depression, and even help you sleep better. “Only a few lifestyle choices have as large an impact on your health as physical activity,” the Centers for Disease Control (CDC) reports, and everyone can gain the benefits. Finding what works for you and your current condition is key, especially when you have a chronic illness. And although the often exhausting, stressful, and painful daily hurdles that come with having an illness can make it seem difficult at best to achieve a level of physical activity that’s healthy, it’s not impossible. Consider this: How can you adjust your daily routine and find your own path to well-being? More importantly, where do you begin? “Right where you are,” says fitness expert Lisa Johnson, owner of Modern Pilates in Massachusetts, who has worked with people with multiple sclerosis and fibromyalgia, among other conditions. “I tell everyone: You’re here; this is what you’ve got. Start where you are. It’s okay.” “When you have a chronic illness there’s a period of grief, not only in that you have a disease that you have to deal with, but also that you can longer do what you used to do. Reframe your goals and what healthy is now, as opposed to what healthy was before,” she explains.

In addition, Johnson encourages people to embrace small improvements and focus on the long term goal; know there will be setbacks, but don’t let that deter your success; plan for rest; work with a doctor or nutritionist on a meal plan; and consult with a doctor or physical therapist. “There are so many different ways to move, there is at least one activity that will work for you,” she says.

Get moving

According to letsmove.gov, adults should be active 30 minutes a day, at least five times a week. However, if you currently don’t exercise or aren’t very active during the day, any increase in physical activity is better than none. It’s imperative, though, that you start slow and build gradually. If you have a chronic health condition, the CDC

CHARGE of your HEALTH “

Exercise tailored to your abilities, no matter how

much or how little,

is the key to overall well-being.

”

— Robert Mayfield, M.D.

recommends you consult with your doctor to come up with a physical activity plan that works for you. “Exercise tailored to your abilities, no matter how much or how little, is the key to overall well-being,” Dr. Robert Mayfield says. What’s important is that you avoid being inactive. Even 60 minutes a week of moderate-intensity aerobic activity is good for you, the CDC explains on its website. Effective forms of aerobic activity include walking and water workouts (see sidebar on aquatic therapy, pg. 25), which bring oxygen and nutrition to your muscles to keep them healthy. It helps rebuild stamina, boosts

Photo CC by Aleksandra Boguslawska, Magdeleine

energy, and reduces stiffness and pain, and is recommended for a number of conditions, including arthritis, fibromyalgia, multiple sclerosis, and myositis. But there are other ways to increase your physical activity and still reap the rewards. Jessica Scalin, a yoga instructor and lifestyle and meditation coach, says a combination of mind-body techniques can go a long way in improving a person’s quality of life. While exercise can suppress cortisol (the body’s stress hormone), meditation can compliment physical activity by quieting the brain TAKE CHARGE and managing stress. of your The goal is to move more and relieve stress, she reiterates. “That’s a lot of what yoga is about: It’s movement and meditation. In the beginning, it’s moving your limbs and muscles and getting the synovial fluid moving in your joints. It warms your muscles so you can stretch, and the muscles supporting your bones aren’t as stiff. You have more flexibility and are not putting unwanted tension on your joints. It also helps break up scar tissue. To me, it’s not just fixing, it’s maintenance.” “I’ve worked with people with all kinds of chronic conditions. The movement is very beneficial. Some people just have to start out with smaller movements. In yoga, that can be assisted by a chair or a wall,” she adds. “For many people with chronic illness, a good level of exercise is combining yoga, meditation, and breathing exercises. If you can do a light stretch and go on a walk and then afterward do another light stretch and relax for a couple of minutes, that is a great routine.” (See pg. 20 for a 30-minute routine). According to the Mayo Clinic, yoga is considered a mind-body type of complementary and alternative medicine practice that brings together physical and mental disciplines to “achieve peacefulness of body and mind, helping you relax and manage stress and anxiety.” CONTINUED ON PAGE 22

HEAL

MINUTES A great start to your day! By Jessica Scalin

Yoga Instructor Lifestyle and Meditation Coach One of the best things you can do for your health and well-being is to breathe. Through the practice of breathing you improve your lung capacity, boost your immune system and turn on the relaxation response to create a healthier and happier you! Meditation is essentially breathing with awareness. Through this focused awareness you discover, uncover and improve yourself. For most, it is difficult to sit still and meditate due to the discomfort we find in the body and the chaotic state in which we often find our mind. Through yoga postures we are able to prepare the body and mind to sit and breathe. By following this 30-minute routine you will gain strength, flexibility and peace of mind.

WALKING

CAT/COW POSE

min

Walking is great for you! You get a cardio workout without unwanted stress to the joints. As your fitness level progresses you can add arm movements to your walk; raising your arms over your head and back down to increase the heart rate.

Come to all fours. Hands flat, spread your fingers wide and spread the weight evenly throughout your entire hand. Stack your knees under hips, your hands under your shoulders. On your inhale bring your head forward, allow your belly to relax. On your exhale, tuck your chin into your chest, engage your core, press your spine up towards the sky. Repeat 4 times.

WRIST STRETCH

PLANK POSE

On all fours still, turn your right hand clockwise 90 degrees or 180 degrees with your fingers facing you. This is great to relieve the stress from working on a computer too! Repeat on the left side.

Stack your shoulders over your wrists with your body parallel to the ground, core engaged, legs straight, head in line with your spine. Hold for as many seconds as possible. When you begin you may only be able to hold it for 1-3 sec. Each time you practice you will build strength in your core. As you gain strength, you can advance to forearm plank, stacking your elbows under your shoulders.

caringvoice.org • Summer 2015 • Taking Charge of Your Health

min

30 sec

Photos by Charlie O’Donnell, CVC

TAKE CHARGE of your HEALTH TREE POSE

Shift your weight to your left leg. Lift the toes of your left foot off of the ground to find the balance points of your foot. Relax your toes back down. Bring your hands to prayer position. Bend your right leg, placing the sole of the right foot against your left ankle with the toes of your right foot touching the ground

for added support. Your right foot will be perpendicular to the ground. Hold for 20 sec. Repeat on the other leg. As you gain balance you can place the foot higher; to the inside of the calf or the inside of your thigh. Never place the foot against the knee joint.

CHARGE of your

HEALTH

7 TAKE CHARGE of your HEALTH 30 SUPPORTED BACK BEND

CHAIR POSE

Separate your feet hip-width apart. Keep your feet pointing straight ahead parallel to one another. Sit down as if you were sitting in a chair. Raise your arms up and forward. Engage your core. At your maximum, sit down with your hips one inch above your knees. Go to the spot that feels the most challenging and hold. Hold for 10-30 sec. Repeat 2 times.

SEATED MEDITATION You can sit cross legged or sit on a chair. If sitting cross legged is very uncomfortable, see alternatives on next page. When you sit make sure your hips and shoulders

BRIDGE POSE

Feet flat on the ground, hipwidth apart, directly under your knees. Press your pelvis up towards the sky. There should be no unwanted pressure in

min

sec

Keep feet hip-width apart. Place your hands at the base of your spine, minutes fingers facing down. Press your chest up towards the ceiling. Keep your chest lifted, drop your head back and gently press your hips forward. minutes Hold 10-30 sec.

min

are even. You want to create symmetry in the body. Stretch your spine up towards the sky, chin parallel to the ground, roll your shoulders up, back and down to create good posture. You may keep your eyes open or closed. Relax your face, breathe.

BREATHING: Take a long slow 3-6 sec inhale through your nose. Pause. Long, slow exhale 3-6 sec out of your mouth. Open your mouth and make a “Hahhh” sound. Pause. Repeat 5-10 times. Take a long slow 3-6 sec minutes inhale through your nose.

1 10 30

min

the neck; the power should be coming from your thighs. Hold 10-30 sec. Repeat 2 times.

SAVASANA

minutes Straighten your legs. Let your feet relax open. Arms close to your side, palms facing the sky. Close your eyes and breathe in complete stillness.

Mandala designed by Freepik.com; Timer icon made by Freepik from www.flaticon.com

Pause. Long, slow exhale 3-6 sec out of your nose. Open your mouth and make a “Hahhh” sound. Pause. Repeat 5-10 times. Calm, regular breathing in and out of your nose for the remaining time.

10 min

min

If you have back pain with your legs straight, bend your knees with your feet flat on the ground. Relax here for 3 min.

CONTINUED FROM 19

Yoga has many styles, forms and intensities that are designed to increase strength and flexibility. Some forms are more beneficial for certain conditions than others (people with multiple sclerosis, for example, shouldn’t participate in hot yoga), but in general, traditional yoga is known to reduce risk factors for heart disease and high blood pressure and may help alleviate depression, pain, anxiety, and insomnia. “Generally speaking, the mindbody disciplines are going to be better geared toward people with chronic illnesses because it’s all about listening to your body and doing the right thing,” Johnson says. “Regular yoga is fantastic. Ta-Chi is another good one.” Another option, Johnson says, is Pilates, which helps build strength in the core muscles for better posture, balance and flexibility. “With Pilates, there are over 500 exercises to choose from. You can tailor the range of motion,” she explains. “I’ve worked with [someone who was involved in a bus accident] all the way up to a trained athlete. One of our clients was a lung transplant patient who saw improvement.” With any of the disciplines, “if you can, start off with private lessons so you can gauge your personal success better. The instructor can help you modify and learn the signs that you need to look for in yourself and when you need to pull back,” Johnson says.

TAKE A SEAT

When chronic illness limits the level and intensity of exercise or physical activity, an individualized plan can be developed with a physician or physical therapist. For people who have trouble breathing, this is especially important. While swimming, walking, and light resistance-training for small muscle groups are recommended forms of exercise for people with pulmonary hypertension, it is advised that you

many people “ For with chronic illness,

a good level of exercise is combining yoga, meditation, and breathing exercises.

”

discuss a fitness plan with your doctor to determine how much exercise is reasonable, according to the Pulmonary Hypertension Association (PHA). Depending on the severity of your symptoms, starting your exercise program at a clinic or hospital-based exercise facility can be helpful. Scott Marlow, a pulmonary rehabilitation coordinator at the Cleveland Clinic, says pulmonary rehabilitation includes four components

Correct Posture

Incorrect Posture

If sitting cross legged is very uncomfortable you can sit on something to raise your hips an inch above your knees. If when you sit cross legged you experience back pain or knees come up and your back rounds forward, use a chair for your exercises. Make sure your bare feet can touch the ground evenly.

— Jessica Scalin

caringvoice.org • Summer 2015 • Taking Charge of Your Health

of exercise: stretching, upper arm endurance, lower extremity endurance, and strengthening. “The end goal is always to figure out the best way for people to keep doing the exercises at home. The lower extremity endurance is key, but we try to make sure we improve skeletal function with upper and lower arm strengthening and the upper arm endurance.” “For upper arm strength, some people use therabands, sometimes we’ll do basic curls, shoulder-presses, sidearm lifts…anything with a light weight — you can use a soup can or a water bottle — depending on how strong you are; anything that you can do to move your arms,” he explains. “Depending on your disease, you don’t want to lift too much weight, but you want to maintain muscle tone and strength. With lower extremity endurance it can be something simple like seat-to-stands or we’ll have them stand and do heal and toe raises, side leg lifts or back leg kicks.” “Top to bottom, everyone is unique, from able-bodied to someone dealing with a chronic illness. My biggest piece of advice for people, especially someone with a chronic illness, is to go excruciatingly slow and keep a journal,” Johnson says. “So maybe you do the smallest of leg lifts and you think it’s ridiculous that you only did five, but wait until the next day and make sure you feel okay and then do six. You have to find

Incorrect Posture

Correct Posture

TAKE CHARGE of your HEALTH your threshold. You want functional strength.”

Mind matters

While yoga combines movement and meditation, Scalin says meditation involves awareness and breathing, and the two go hand-in-hand in fostering physical and mental wellness. “Meditation is beneficial for a wide range of chronic conditions; everyone can do [a form of it]. Studies have shown it boosts the immune system, reduces inflammation, and relieves stress,” she says. Dawn Quicke, a certified massage therapist and owner of Living Health Massage and Wellness Center, LLC in Virginia agrees. “How we govern our mind has a lot to do with how our body responds. Our emotional well-being is just as important as our physical wellbeing. As a matter of fact, it plays a key roll.” Quicke suggests meditating 10 minutes every morning to help reduce anxiety and stress. “Meditation relaxes the nervous system and allows us to calibrate,” she says. “The mind and body work together; and I believe the mind is the engine.” People have practiced meditation for centuries and have touted its benefits for physical and mental relaxation, coping with illness, and enhancing overall health and well-being. And now measurable neurological and physical data is emerging that shows

meditation has the potential to improve concentration and attention; reduce anxiety, stress, and pain; and enhance mood and self-esteem. An eight-week mindfulness meditation study led by Harvard University researchers at Massachusetts General Hospital (MGH) nearly five years ago was the first to determine that regular meditation produces changes in the brain’s gray matter; specifically, increased density in the hippocampus, which is important for “learning and memory, and in structures associated with self-awareness, compassion, and introspection,” the Harvard Gazette reported in 2011. According to the National Center for Biotechnology Information (NCBI), “Meditation has been studied in populations with fibromyalgia, cancer, hypertension, and psoriasis...[and] can positively influence the experience of chronic illness and can serve as a primary, secondary, and/or tertiary prevention strategy.” Just as there are numerous forms of physical activity and ways to exercise, there are also various ways to meditate, and they don’t all require sitting still for long periods of time. Mindfulness meditation, for example, simply involves an awareness and acceptance of the present. You observe thoughts and emotions, let them pass without judgment, and focus on your experiences at that moment, such as your breathing.

CHARGE of your HEALTH

And, Scalin adds, it can be done nearly anytime, anywhere, whether you’re sitting or lying down in a quiet area of your home, taking a walk outdoors, riding in a car, or waiting in line. In general, studies have shown that regularly practicing meditation and mindfulness positively influences a person’s lifestyle and serves as yet another way to foster a more accepting outlook toward your day, and living with a long-term illness.

Breath deep “One of the best things you can do TAKE CHARGE of your HEAL for your health and well-being is to [regulate your] breathing,” Scalin says. “Through breathing practices you improve your lung capacity, boost your immune system and turn on the relaxation response creating a healthier, happier you.” “When you think about the physicality of breathing, you’re actually massaging the inside of your body and working the internal parts of your body in a beneficial way. Since your breathing drives everything in your body, everything gets healthier,” she explains. “People who are chronically ill are stressed frequently, so it’s important for [them] to stretch and breathe to help turn off the stress response in their body and turn on the relaxation response.” Scalin tells people to breathe as CONTINUED ON PAGE 24

TAKE CHARGE of your HEALTH deeply as you can and count, and slowly increase the count over time to build endurance. “If it’s a two-second breath, count to three each time.” The Cleveland Clinic explains on its website that “when you have pulmonary disease, air often becomes trapped in the lungs, pushing down on the diaphragm. The neck and chest muscles must then assume an increased share of the work of breathing. This can leave the diaphragm weakened and flattened, causing it to work less efficiently.” Diaphragmatic breathing can help with this by training you to use the diaphragm correctly and CHARGEwhich of strengthen TAKE it while breathing, will in turn decrease the work of breathing by slowing your breathing rate and decreasing oxygen demand. Marlow says that while there are limited studies on the proven effects of breathing exercises with restrictive lung disease, they are taught in pulmonary rehabilitation in an effort to help calm and strengthen a person’s breathing. “The problem is that as people experience shortness of breath they tend to cut back on what they do, and then we have two things causing the shortness of breath: the general deconditioning and the underlying lung condition. So what we try to do [in pulmonary rehabilitation] is to keep them as strong as we can with that basic everyday activity of exercise in order to maintain that muscle strength as a means to improve the shortness of breath as best as we can,” he says.

Take charge

“When you’re dealing with a chronic illness, you’re going to have good days and bad days and you need to adapt and know how to read your body and know that on bad days you’ll only be able to do a couple of small things, but that’s still a victory,” Johnson says. “The fact that you’re thinking about exercise is a victory.” When 85-year-old John Clarry was diagnosed with idiopathic pulmonary fibrosis (IPF) he was told he had two to three years to live. After taking time to 24

absorb the shocking news, he promptly took charge of his health. “It’s been an incredibly interesting experience because I know I’m sick, but I feel better now than I have in years,” he says. Clarry attributes the progression to a combination of daily exercise, meditation, and a leaner diet, high in vegetables and protein. Positive thinking, he says, plays an important role. In fact, for him it was a matter of survival. “Attitude is so much of life. That’s the same way with having a disease like this. I was really down for about three or four days, and I don’t your HEALTH usually get down, but I was rethinking my whole life.” “I’ve decided I’m going to stay as healthy as I can to the end. I changed my lifestyle. Change is hard, but I stuck to it and I’m seeing results,” he says. “I feel better — that’s the payoff.” Kate Lorig, a nurse and professor at Stanford University School of Medicine who was born with Gaucher’s disease, knows firsthand that people with a chronic illness can find empowerment and better manage their conditions by taking an active role in their own health care. In 1992 she and a team of Stanford researchers developed a self-management program to help people with chronic illnesses develop the skills needed to attain just that. This program developed into the “Arthritis Self-Help Course” and was the prototype for the “Chronic Disease Self-Management Program,” the “Building Better Caregiver’s Program,” and “Self-Management Program,” among others. “In the self-management programs we try to give people with [chronic illnesses] the skills to handle the medical management, role management, and emotional management aspects,” she explains. “The more important thing is to build confidence, do things in steps and get people to start moving and start making small changes.” For instance, “everybody needs to exercise. So, what can you do now without feeling worse when you’re

caringvoice.org • Summer 2015 • Taking Charge of Your Health

finished than before you started? Can you walk to the bathroom? Can you walk a minute? Then try walking a minute once an hour while you’re awake. That’s exercise. That’s 10 minutes a day. That’s not bad for somebody who’s disabled,” she explains. “After you’ve done it a week or so, add to it. Most people, even people with severe chronic conditions, can do much more exercise than they think. If there’s a magic component to self-management, it’s to exercise. It’s the single best thing we can do for ourselves.” Lorig emphasizes that in selfmanagement, the decisions have to be your own. “It’s a matter of just deciding to try something, to do something. It doesn’t have to be perfect. We’re going for what is real for each individual today. It’s up to the individual to decide what they can do today. But you’re not going to make changes if you don’t start.” Clarry decided a while back to change his lifestyle and he stuck to it. He says in the last couple of years exercising has helped his lung capacity, he’s gained muscle strength, he’s no longer fatigued, and his blood pressure and heart rate have improved. “With that being said, IPF is a very insidious disease. Some days I don’t really feel that hot, but I still go to the gym, whether I feel good or not. Instead of doing 30 minutes and seven miles on the bike, I’ll do 20 minutes. I don’t want to overdo it. If I’m not feeling well, I don’t do as much, but I still go. You’ve got to keep moving every day.” While each chronic illness has its own challenges, when you take charge of your overall health and make decisions that help you better manage your conditions, such as increasing your physical activity, reducing stress, and learning new ways to calm your mind, you take the first step on your own path to well-being. As Lorig says, “Just because you have a health problem doesn’t mean you can’t be healthy. That, on a day-to-day basis, is up to us.”

Consult a physician before beginning an exercise program to screen for overall cardiopulmonary status. This involves a careful review of your history and documenting changes such as increased shortness of breath on exertion above a patient’s normal baseline or unusual chest, jaw or arm pain brought on by exertion and relieved by rest. If such symptoms are present, further testing may be warranted, such as a simple electrocardiogram, cardiac stress test or even cardiac catheterization. Unless you know your physician embraces a more holistic approach, it is often best to consult with a nutritionist regarding diet and dietary changes. Finally, to echo the recommendations above, listen to your body and work carefully with your trainer to achieve realistic goals in a slow and methodical fashion. Setting the bar too high often results in frustration and abandoning the things most beneficial to your overall health. — Robert Mayfield, M.D.

v Visit bit.ly/stanfordorganizations

To find a program in your area. The Stanford Chronic Disease Self-Management Program (CDSMP) is taught in every state, except Wyoming. Or, contact your area Agency on Aging.

v Visit bit.ly/stanfordselfmanagement

For the self management book, "Living a Healthy Life with Chronic Conditions". Kate Lorig, DrPH, and others outline tips, suggestions, and strategies to build confidence in managing chronic illness and symptoms, such as fatigue, pain, shortness of breath, disability, and depression.

v Visit www.bullpub.com

For the “Chronic Disease Self- Management Program: Tool Kit for Active Living” that includes the latest edition of the book, as well as an exercise CD and a relaxation CD, all of which can be done at home.

MORE TO COME — Community will continue its well-being coverage in the fall issue with a special focus on ways to manage stress. Do you have tips to share? Email your thoughts and ideas to magazine@caringvoice.org. We look forward to hearing from you!

AQUATIC THERAPY

ater can be an excellent setting for exercise, especially for people who have difficulty with weight-bearing activities due to chronic pain, injury, or illness. Janet Gangaway, a veteran physical therapist and assistant professor at University of Hartford who is certified through the Aquatic Therapy and Rehabilitation Institute, recommends aquatic therapy for anyone who has difficulty moving on land. “The buoyancy of water, temperature, and three-dimensional resistance all play a role in allowing for easier movement while strengthening at the same time,” she says. “Aquatic therapy can be used to improve balance, strength and range of motion, while reducing pain and stress. Pressure gradients found in the water also improve and support circulation and organ function.” Gangaway says aquatic therapy is a “tremendous help for a number of conditions,” including arthritis, myositis, fibromyalgia, and multiple sclerosis. The water removes painful pressure off of joints and muscles, provides support, and enhances flexibility. For rehabilitative purposes, aquatic therapy helps restore function by retraining the brain and body as to the correct way to move. Gangaway shares the story of a nurse who had a herniated disc that required urgent neurosurgery as a prime example. Her resulting bed rest created a host of other problems, including myofascial pain, incontinence, limited mobility, and the inability to walk without an assistive device. “Within 2-3 aquatic therapy sessions her incontinence had resolved, she could walk and move more normally and she was back to work in under a year. She went from being able to hold herself in a static position in the pool on day one, to being able to tolerate

vigorous activity,” she recalls. Exercising in the water has psychological benefits, too. People with chronic illness often get caught in a vicious cycle of pain, stress, and depression, Gangaway explains, and the pool can be a great place to break that cycle. “[It] allows those who have difficulty moving on land the freedom of movement in a less stressful environment, which helps improve self-worth and reduces anxiety.” “I can relate because I have fibromyalgia and deal with pain on a daily basis. But, I also don’t let it win. Life has to go on. I can’t let pain control me,” she says. The key is to start slow. “Typically, patients will say it doesn’t hurt at all to exercise in the water. The challenge is to get them to understand that could change when they get out of the pool. Sometimes they feel so great they want to overdo it. It’s better to do a little and see how you react to it out of the pool. Do less and do it regularly. As with any training program, start small and finish big,” Gangaway says. “The bottom line is you have to start.” Aquatic physical therapy can only be facilitated by a physical therapist, while aquatic specialists usually lead aquatic exercise classes. To find an aquatic physical therapist or water exercise class in your area, you may contact your local hospital or parks and recreation department, but first consult with your physician to see if aquatic therapy is right for you.

Photo CC by Julie Steiner, Flicker 25

10 Ways to Prep Your Kitchen For Clean Eating Success By Chef Mareya, aka The Fit Foodie Founder of eatcleaner.com

s it possible to eat food that not only tastes delicious, but also provides your body with everything it needs to function perfectly, have more energy, heal itself from the inside out, get fit automatically, feel amazing and burn fat all day long? The answer is: YES. A big part of that is prepping for success by creating lifestyle habits to achieve balance, de-stress and succeed. If you fail to plan, you can most certainly plan to fail when it comes to eating cleaner, because there’s more preparation and awareness involved. Here are 10 of my favorite “Fit Foodie Filosophies” — fit lifestyle approaches that will help you get ready for clean eating success: 1 Rehab your fridge and purge your pantry To eat cleaner and get leaner, start with cleaning out your fridge and pantry to make way for the good stuff. Here are the items to purge: If it’s bleached, contains high fructose corn syrup, hydrogenated fats, the word “artificial” in front of anything, trans fats, 8 syllable words or anything on my “Steer Clear” list (see sidebar), it’s time to say buh-bye. Also be aware of sodium and sugar, keeping your added sugar intake to less than 50 grams a day (for kids it’s 25 grams) and sodium to less than 2,200 mg per day. Focus on transforming your fridge into a salad bar with good sources of protein, complex carbohydrates and high quality fats, along with a variety of fresh produce washed with Eat Cleaner® to extend shelf life and wash away bacteria, pesticide residue and wax. 2 Learn the language of Label-ese You may not be fluent in another language but learning how to read “label-ese,” or the language of labels, can help you navigate the grocery store aisles to save your health. There are over 14,000 additives used in commercially prepared foods today. Some are far more complicated and potentially 26

dangerous. Ones to make note of are the artificial preservatives and flavors that have been linked to cancer, toxicity to the nervous system and other ill side effects. These include BHA, BHT, EDTA, sodium benzoate, nitrates, nitrites and monosodium glutamate, among others. 3 Ditch the diet mentality The key to a balanced diet is not to diet. Why would we ever be motivated to stick to something that begins with DIE? Diet comes from a place of deprivation and restriction. Being too restrictive, not eating enough of the right foods and eating too little can all sabotage your efforts to get healthy and maintain the proper weight and body fat levels. I created a macronutrientproportioned meal plan that helps people balance their food intake called the Cleaner Plate Club Meal Prep Program for that reason. When you eat cleaner, you are focusing on fresh and living sustainably to feed your body to the core – and that just feels good. 4 Join the hydration nation Ahhh, water. You can live for weeks without food, but without water, your body will shut down in just a few days. It’s that important. Every metabolic function your cells perform requires

caringvoice.org • Summer 2015 • Taking Charge of Your Health

Photo courtesy Chef Mareya Ibrahim

hydration, including digestion, so strive to drink half your body weight in ounces every day. Keep clean water available sustainably in your kitchen at all times by using a water filter on your sink or refrigerator, a filtered pitcher or a water delivery service and fill your own reusable bottles to help cut down on plastic. 5 Get the right tools for the job Just like an artist or mechanic, being equipped with the right stuff in the kitchen will make your preparation much easier and more efficient. These picks will also help enable you to control portions and keep your cooking cleaner and leaner. Some of my favorite essential tools include: measuring cups and spoons; BPA-free reusable containers to store food in various sizes; insulated cooler bag to transport meals; large colander to wash produce; a set of cutting boards – 1 for produce, 1 for meats, 1 for fish and 1 for everything else; a powerful blender for smoothies, soups and sauces; a good food processor for nut butters, spreads and dips; a set of chopping and paring knives; handheld spiralizer for making veggie pasta; immersion blender for purees; crock pot for slow cooked meals; baking dishes with lids in various sizes; and assorted cooking pans that are Teflon and chemical-free, please!

6 Shop smart, save green If you’re shopping at five different stores, think again. Streamline your purchases to help save time and money. Club stores offer products in bulk so you can purchase more efficiently, especially if you’re getting the same types of items every week. Look to farmers markets for locally grown produce, eggs, meats, seafood and specialty items to support growers in your area. You can also consider an online delivery service that will ship all your fresh and packaged groceries directly to your doorstep. Make a master grocery list and check off what you need weekly so that you’re stocked up on the weekend and ready for the week. 7 Prepare for Food 911’s, it’s inevitable Someone is hungry RIGHT NOW and can’t wait one more minute for mealtime. Having a few ready-to-eat snacks will help save everyone’s sanity.

CONTINUED ON PAGE 28

Chef Mareya’s Steer Clear List Artificial colors

Food colorings are used to make food look more appealing or to replace colors lost in processing. They are suspected to cause allergies, asthma, hyperactivity and are potentially carcinogenic.

Artificial preservatives (BHA, BHT, EDTA, Sodium Benzoate, Sulfites)

You may see these ingredients in chips, baked goods, carbonated drinks, cheese spreads, hummus, salsa, chewing gum, ice cream, and breakfast cereals. These preservatives are actually synthetic petroleum-based and fat-soluble antioxidants, used by manufacturers to prevent oxidation and retard rancidity.

Nitrites and Nitrates

Cured, preserved, smoked meats are often saturated with nitrites and nitrates to preserve shelf life and give it a “healthy” pink hue. These two preservatives may prevent the growth of bacteria but can also transform into cancer-causing agents called nitrosamines in the stomach.

Monosodium Glutamate (MSG)

MSG lurks in all kinds of sauces used to prepare the foods that you thought were MSG-free. There are also significant amounts in all kinds of snacks, seasonings, candy, over-the-counter medications, and nutritional supplements.

Artificial Sweeteners (Aspartame, Sucralose, Saccharin, etc.)

Zero calorie sweeteners have been linked to nausea, headaches and nervous system disruption. Instead, opt to sweeten with natural zero sweeteners, like organic stevia.

High Fructose Corn Syrup

Otherwise known as HFCS, it’s ultrarefined, mostly GMO. It shows up in a lot of syrups, sauces and beverages, so take a double look at those labels when evaluating choices.

Hydrogenated fats (margarine, shortening, etc.)

These artery-clogging fats are linked to heart disease and a myriad of other complications. Instead, opt for heart healthy oils, including olive, avocado, sesame, grapeseed and other nut/seed oils that deliver good quality essential fatty acids.

At home, keep a bowl filled with fresh fruit and Eat Cleaner® Biodegradable Fruit + Vegetable Wipes for easy cleaning. Also, keep a container of hummus or salsa with cut-up veggies available for a quick bite. I also recommend keeping a bag of shelf-stable, clean snacks you can take on the go so you don’t get lured by the flashing lights of the drive-thru. Items like beef jerky (pick preservative-free types), high-protein bars, low sugar trail mix and mixed nuts are all good choices, along with plenty of water. 8 Meal prep for success Pick a day, like Sunday, and dedicate an hour to getting ready for the week by prepping a few staples; pre-wash and chop fruit and veggies; grill chicken, salmon and other lean proteins; make a nutritious dip for veggies like hummus, white bean dip or salsa; make a pot of quinoa, brown rice or farro. With these essentials, you’ve got ingredients to mix and match into tasty salads, wraps, bowls and other quick meals to carry you through the week. 9 Waste less, eat more If someone took $150 and flushed it down the toilet you might think they were nuts. But if you’re dumping fresh produce out every month, you’re basically doing the same thing. I created Eat Cleaner® to not only help you eat cleaner, safer produce but to help it last longer. It’s not like water. You can wash your produce ahead! So here’s what I suggest: bring your produce home, wash it with Eat Cleaner and put it back into a sealed container – and just watch how much longer it lasts and how much more your family eats. You’ve now made your produce more convenient to eat, without spending a lot of money on all the pre-washed produce that’s usually just cleaned with chlorinated water, anyway. 10 Grow a family of fit foodies It may seem easier to keep your kids out of the kitchen during dinnertime 28

prep, but there’s no better way to cultivate a good palate. Studies show that children who are involved in the process are 80% more likely to try new things – like spinach, kale, and all the other green things you’ve been trying to get them to eat. Give your children

simple tasks like washing veggies, mixing ingredients or pressing the “start” button on the blender. They will take pride in their accomplishments and soon enough, they’ll be making the same smart choices you’ve demonstrated in your own actions.

Lastly, the immune system is the body’s natural reaction or response to “foreign invasion.” In healthy people, a properly functioning immune system readily fights off harmful bacteria and other pathogens that cause infection. However, the immune systems of people with certain illnesses are often weakened from the disease process and/or the side effects of some treatments, making them susceptible to many types of infections — like those that can be brought on by harmful bacteria that cause foodborne illness. We created Eat Cleaner to help you take food safety into your own hands.

PEANUT CURRY GRILLED SEA BASS WITH FRESH ASPARAGUS INGREDIENTS

DIRECTIONS

2 tablespoons peanut butter powder

In a bowl, mix the peanut butter powder, lime juice, soy sauce, garlic, curry powder, and cayenne pepper.

1 tablespoon fresh lime juice  1 tablespoon low sodium soy sauce

Preheat grill or skillet on medium high heat.

1 clove garlic, chopped

Spray non-stick cooking spray on the grill grate or skillet. Grill 5 minutes on each side or until fish is cooked through; repeat with asparagus.

1/3 teaspoon curry powder  1 dash ground cayenne pepper 16 ounces fresh wild sea bass or your favorite wild caught white fish, washed with Eat Cleaner® Seafood + Poultry Wash  1 bunch fresh asparagus, washed with Eat Cleaner® Fruit + Vegetable Wash

caringvoice.org • Summer 2015 • Taking Charge of Your Health

Top with peanut sauce and serve.

Prep and Cooking Time: 15 minutes Serves 4 SOURCE: Chef Mareya, aka The Fit Foodie, Founder of eatcleaner.com

Fresh taste of

Summer Spring Salad..........................30 Veggie Chili...........................30

Chicken & Asparagus Tossed with Penne................31

PINA-CADO SMOOTHNESS DELIGHT INGREDIENTS 1/2 cup pineapple chunks (fresh, canned or frozen) 1/2 ripe avocado 1/3 cup coconut cream 1/2 cup fresh kale 1/2 cup fresh spinach 2 teaspoons lime juice 1/4 cup water or pineapple juice

Vegetarian Noodle Salad......32

1 cup ice

Sweet and Sour Pork............32

DIRECTIONS Mix ingredients in blender until smooth and enjoy your island delight! SOURCE: Sabrina Parmelee, CVC

CUCUMBER & MINT INFUSED WATER INGREDIENTS 1 sliced cucumber 4 leaves of mint 1/2 lime, juiced 32 ounces of cold, purified water

DIRECTIONS Mix all ingredients and chill in refrigerator overnight. SOURCE: Renita Wade, CVC

Photos by Charlie O’Donnell,CVC

Tasty Tip: Avocados can be used as a substitute for mayonnaise, butter or oil in your favorite baked goods recipes such as cookies, cakes and muffins.

VEGGIE CHILI INGREDIENTS

SPRING SALAD

1 onion diced

INGREDIENTS Mixed greens 1 - 2 kiwis, sliced 1 - 2 mandarin oranges 6 ounces feta cheese 6 ounces sliced almonds 6 ounces cranraisins 1 pear, sliced fresh Mix everything together. Serve with raspberry vinaigrette dressing.

Serves 2 SOURCE: Donna Thornton, reader recipe

1 - 2 tablespoons vegetable oil 1 jar plain marinara sauce

Immune Boosting Veggies Arugula Bell peppers Broccoli Brussels sprouts Cabbage Cauliflower Collard greens Kale Onions Radishes Tomatoes Turnips www.livestrong.com/ article/530718-a-list-ofvegetables-to-boost-theimmune-system/

(any brand will do)

3 - 4 small cans of beans drained (you can mix it up with black, kidney and chili beans, but use any you like)

1 - 2 packets taco seasoning (taste-test after one packet to see if you like a stronger flavor then add more if you like)

1 - 2 cups frozen or fresh corn kernels

DIRECTIONS SautĂŠ the onion in the oil until soft then combine the rest of the ingredients and stir until hot and bubbling. Serve with a sprinkle of cheese and a dollop of low fat sour cream. This recipe freezes well. SOURCE: Lisa Mullin, reader recipe

CHICKEN AND ASPARAGUS TOSSED WITH PENNE INGREDIENTS 1 1/2 cups uncooked whole-grain penne pasta 1 cup asparagus, cut into 1-inch pieces 6 ounces boneless, skinless chicken breasts, cut into 1-inch cubes 2 cloves garlic, minced 1 can (14.5 ounces) diced tomatoes, no salt added, including juice 2 teaspoons dried basil or oregano 1 ounce soft goat cheese, crumbled 1 tablespoon Parmesan cheese

Tasty Tip: Goat cheese, such as Montrachet, has a soft, creamy texture and a slightly tangy flavor. If you prefer, you can use other cheeses in this recipe, such as feta or Romano.

DIRECTIONS Fill a large pot 3/4 full with water and bring to a boil. Add the pasta and cook until al dente (tender), 10 to 12 minutes, or according to the package directions. Drain the pasta thoroughly. Set aside. In a pot fitted with a steamer basket, bring 1 inch of water to a boil. Add the asparagus. Cover and steam until tender-crisp, about 2 to 3 minutes. Spray a large nonstick frying pan with cooking spray. Add the chicken and garlic and sautĂŠ over medium-high heat. Cook until the chicken is golden brown, about 5 to 7 minutes. Add the tomatoes, including their juice, basil or oregano and simmer 1 minute more. In a large bowl, add the cooked pasta, steamed asparagus, chicken mixture and goat cheese. Toss gently to mix evenly. To serve, divide the pasta mixture between 2 plates. Sprinkle each serving with 1/2 tablespoon Parmesan cheese. Serve immediately.

Serves 2 SOURCE: Reprinted from MayoClinic.com Healthy Recipes (http://www.mayoclinic.org/healthy-lifestyle/recipes/chicken-andasparagus-tossed-with-penne/rcp-20049753) ÂŠ Mayo Foundation for Medical Education and Research. All rights reserved.

Nutritional Analysis: Serving size : About 2 1/2 cups total Total carbohydrate 56 g Dietary fiber 11 g Sodium 276 mg Saturated fat 3 g Total fat 7 g

Trans fat 0 g Cholesterol 63 mg Protein 32 g Monounsaturated fat 2 g Calories 415 Sugars 0 g

Fresh

VEGETARIAN NOODLE SALAD

3 fresh peppers (our family’s favorite is 1 red, 1 yellow and 1 orange)

Peanut oil

DIRECTIONS Drain the pineapple and set aside. Clean and cube the peppers and set aside.

16 ounces frozen mixed vegetables of your choice

Take one cup of flour and put in a one-gallon zip lock bag and put the pork inside, shake until the pork is coated. Brown the pork in peanut oil and place in large casserole dish.

(we like the California blend)

1 bottle of Italian dressing (only 45 mg sodium)

DIRECTIONS

Sauté the peppers in 1 teaspoon of peanut oil just until they start to sweat. Add the pineapples to the peppers and sauté together for three minutes.

Cook the noodles as directed. Just as they are finishing add the frozen vegetables so that they thaw.

Pour the mixture over the pork and mix together.

Drain the noodles and vegetables and let cool for 15 minutes.

Pour the sweet and sour sauce over the pork and bake for 30 minutes at 350 degrees.

Summer

After the noodles and vegetables have cooled, pour the Italian dressing over and stir together, making sure that the noodle mixture is well coated.

1 can pineapple chunks

Flour

(we like the shells but any short noodle is fine)

SOURCE: Rosemary Huggins, reader recipe

2 pounds of boneless pork chops cut into cubed bite size pieces

contains 45 mg sodium)

16 ounces of noodles of your choice

Serve as-is or as a side dish. This recipe freezes well.

INGREDIENTS

Low sodium sweet and sour sauce (there is one brand that only

INGREDIENTS

For freshness, I add whole cherry tomatoes and fresh mushrooms (but you can add whatever fresh vegetables you would like).

SWEET AND SOUR PORK

caringvoice.org • Summer 2015 • Taking Charge of Your Health

Serve over rice.

Serves 6

SOURCE: Rosemary Huggins, reader recipe

Summer Health Tips Food Safety Throw away leftover, cut produce that has been sitting at room temperature for more than two hours, or one hour if in weather above 90 degrees. Wash all fruits and vegetables before peeling, cutting or eating to eliminate bacteria. Separate meat from other foods. Cooked meat and poultry can last 2-6 months in the freezer and 3-4 days in the refrigerator.

Sun Safety Wear sunscreen and protective lip balm with an SPF 15 or higher that protects against UVA and UVB rays. Apply sunscreen to dry skin 30 minutes before going outside and reapply every two hours, even on cloudy days. Sunscreen expires within 2-3 years. Wear protective clothing, such as hats, sunglasses, and cover-ups as well as lightweight, light-colored, and loose-fitting clothing. After being out in the sun, apply moisturizer, such as vitamin E or aloe vera. Limit sun exposure when the sun’s UV rays are strongest, between 10 a.m. and 4 p.m.

Stay Hydrated Drink plenty of water throughout the day. Depending on where you live and your activity level, you may need more than eight (8 oz.) glasses a day. If you wait until you’re thirsty to drink water, you may already be dehydrated. Don’t wait. Snack on foods that help you stay hydrated, like watermelon, cantaloupe, cucumbers, celery, and strawberries. Avoid alcohol and drinks containing high amounts of caffeine and sugar. Illustrations by Charlie O’Donnell,CVC

Support Groups Provide Strength

Debbie Drell, Senior Director of Volunteer Services, Pulmonary Hypertension Association, knows firsthand that there’s strength in numbers. Here she offers insight about the emotional and educational benefits of support groups.

t was a cloudy, dark day in the small town of Cuero, patient. Little did she know that this first meeting of three Texas, when my sister, Alex, took out the trash patients and a patient’s nurse sister, around a kitchen table and experienced her fourth grand mal seizure. The in Florida in 1991, would not only be the first support proverbial “straw that broke the camel’s back” was group for PH patients, but would lead to the formation this simple household task that her body just couldn’t of the Pulmonary Hypertension Association (PHA). This manage. After a dozen misdiagnoses, the events on this day association has evolved into a community of more than in September 1998 would finally lead doctors to determine 16,000 PH patients, caregivers, family members and medical that she had pulmonary hypertension (PH) — a rare, life- professionals. PHA’s mission is to find ways to prevent and threatening disease that is difficult to diagnose. cure PH and to provide hope to the community through It must have been so difficult for Alex, during the support, education, research, advocacy and awareness. early days, to figure out a new way of caring for her three We’ve come a long way since those difficult, early days: young daughters with a weakened heart, struggling lungs from zero to 12 PH therapies, from one group to 245 support and dramatically reduced groups nationwide, from energy. On top of it all, her three years of letter writing husband didn’t understand to now instant online and couldn’t handle the connections through social shift of responsibilities, media and websites. hospitalizations, insurance I’ve seen this growth battles, and disability firsthand. I’ve been applications. Things got working at PHA for 11 worse before they got better. years and my sister has I’ll never forget the been living with this first time Alex met another disease for 17 years. My person diagnosed with PH. job is to coordinate the Living in a town with a work of hundreds of population of 4,000, it was volunteers leading the 245 nothing short of a miracle support groups that meet that she met someone else nearly 800 times a year. living with this “one in a Today, tons of million” rare disease. This information is available Sisters, Alex Flipse and Debbie Drell. Photo courtesy Debbie Drell other person with PH was online; however, anyone a young woman living with PH associated with lupus. It was who was diagnosed with PH has likely Googled the words an amazing moment that would change our lives forever. and found scary, confusing and outdated information (unless, of course, they find themselves on our website). We were not alone. In the late 1980s, a woman diagnosed with PH spent Even though there is a growing field of research and three years writing letters to the National Organization understanding of the disease, there is still much confusion of Rare Diseases before finally connecting with another about pulmonary hypertension: 34

caringvoice.org • Summer 2015 • Taking Charge of Your Health

® What do my “numbers” mean when I get evaluated? What if I never had a right heart catheterization? ®

Does it matter if I was diagnosed and get care from a pulmonologist, cardiologist, or rheumatologist?

Should I know the World Health Organization (WHO) group classification for my disease? What is this?

An individual diagnosed with PH has so much to learn, and that’s where a support group can be a vital resource. Connecting with another patient can give hope, and support groups often provide medical information in the form of doctor or nurse presenters during meetings. There are numerous reasons to attend a support group meeting. Over the years, I’ve heard valid reasons why people can’t make it to support groups. But here are some reasons that I must simply challenge:

you and know that they have hope for better living down the road.

HEALTH BENEFITS OF SUPPORT GROUPS:

“I have enough support with my family and friends.”

“

That’s wonderful! Have you considered that maybe your family would love to learn and meet other family members caring for their loved one with PH? Try coming to a meeting for yourself and see if you can learn from other patients, too.

“I’m shy and don’t really want to talk.”

At support group meetings, patients share their journeys — both good and bad. Not only can this help someone come to terms with their own diagnosis, but it can also act as a cathartic release. However, just because one person shares their journey, it doesn’t mean that you have to as well. Sometimes it can take a meeting or two (or more) to feel comfortable sharing. Your journey is your own, and sharing at support group meetings is just one of the ways you can connect with other support group members, but it’s not mandatory.

“I am doing fine and don’t need “I’m not ‘newly diagnosed’ to vent.” so I don’t need this group.” Obviously, support groups provide a safe space for venting – but that’s not all they do, and venting doesn’t necessarily happen at every meeting. Many support groups share stories, victories, laughter and tips for better living. Many support groups provide education in the form of medical talks by leading doctors, nurses and other allied healthcare professionals. Some groups bring yoga instructors, dietitians, and laughter therapists to reduce stress and improve coping skills.

Long-term survivors can help newly diagnosed — you give them hope! Groups also provide updates on therapies (new and existing treatments), conversations on clinical trials and even speakers on pulmonary rehabilitation and other topics that are good for people who are stable and managing well.

“Support groups are too far away, and I can’t leave my house.” This is sadly the case for some people

“I don’t want to see people who live too far from groups or don’t sicker than me.” have transportation to meetings. PHA There might be people who are sicker than you, but PH is very complex and everyone is different. One person may be on oxygen today, and in a year, with therapies, improve. Maybe the people who are sicker than you need to see

provides online support in the form of email mentors, daily online chats and Google and Facebook groups. Earlier this year, the organization officially launched myPHA, a new online social network for patients and caregivers CONTINUED ON PAGE 36

Support groups have been shown to have a positive effect on patients with other illnesses. One large study of breast cancer, for example, which like pulmonary hypertension is a life-threatening disease primarily affecting women, showed that support group participation improved patients’ moods and decreased their pain... Another large study of patients with heart disease found that support group participation helped reduce anxiety and depression [and] also found that support group participants had lower blood pressure and longer survival. … Although routine support group attendance may not be well-suited for everyone (and some may attend once or only occasionally), it is clear that the benefits are potentially immense and probably worthwhile for most patients with PAH.

— Sean Studer, MD, MSc,

”

Director of Lung Transplantation and Pulmonary Hypertension at Newark Beth Israel Medical Center in Newark, N.J.

Published in PHA’s quarterly magazine, Pathlight, Spring 2015

(www.myPHAssociation.org); it’s a one-stop shop for community connection, support and learning. You can find people like you (age group, type of PH, geographic location, etc.) and discuss the topics that you care about.

“I don’t have Internet access; I can’t connect online and can’t get to a support group.”

PHA always provides instant connection with the Patient-to-Patient Support Line (see number below). PHA also hosts monthly telephone support groups for caregivers (all) and patients. Call the Support Line for more information.

What about the Caregivers?

Right now as I write this, the flight attendant on my plane heading back to D.C. is telling us to “put your oxygen mask on first before putting it on your child.” I had to pause and laugh as this is the classic caregivers’ dilemma — we have a hard time remembering our own needs. A support group is a good way to make “me time.” It’s something you can do together with your loved one. While at a meeting, you can learn about various topics relating to PH, receive support you may not have even realized you needed, all the while strengthening your relationship (multitaskers, rejoice!). If you’re a caregiver reading this, you know we try to be perfect and do our best, but there is no such thing as a “perfect caregiver.” When you come to a support group meeting, you can learn from other caregivers and find relief to connect with others who know exactly what you’re going through. When I first started talking to other caregivers, I saw so many similarities in their journey. I told them about all the caregiving mistakes I’ve made, about how my attempts to be “perfect” led me to experience huge burnout. Others told me that they, too, were sick all the time, disconnected from friends, pushed their needs to the 36

Above: Alex Flipse and Debbie Drell at the City of Takoma Park; left: Debbie Drell, Evan White, Alex Flipse; right: Debbie Drell, Senior Director of Volunteer Services, PHA

side because their loved one was always priority number one. It’s easy to ignore our own needs; it seems selfish and inconsequential when our loved ones are battling medication side effects, oxygen, and hospitalizations. Who has time (and who cares) for “me time”? If you’re in it for the long haul, you need to make the time. Support groups can be a good time to relax and take a break. The bond I have with my sister grew stronger as we made mutual friends within the PH community and kept in touch with them during her journey. PHA also has educational resources for caregivers, like educational webinars and booklets that teach you how to pace yourself, avoid burnout and understand depression (which is not uncommon with this diagnosis). You can connect with other caregivers online and join a community of caregivers through myPHA.

caringvoice.org • Summer 2015 • Taking Charge of Your Health

I thought she would only live for two years after her diagnosis, and now my sister is 16 years into PH. I thank support groups and the work of PHA for keeping her (and me) informed, sane, connected and loving life.

801 Roeder Road, Suite 1000 Silver Spring, MD 20910 Phone: 301-565-3004 Fax: 301-565-3994 Email: PHA@PHAssociation.org Patient-to-Patient Support Line: 800-748-7274 www.phassociation.org

Legal Corner

6 Simple Steps

to an Estate Plan by Lauren Patrizio, Esq. CVC Senior Patient Advocate

We know it’s not fun to think about, but the reality of life is that it isn’t going to last forever. We’re talking about estate planning — something that’s important for everyone. The following six steps will help ensure that you have your legal ducks in a row, making it easy for your loved ones to carry out your wishes.

1. Create (or update) your will Virtually everyone postpones writing a will — maybe we don’t want such a tangible reminder of mortality, perhaps we view the process as relinquishing the ownership of our property, or maybe we think we have nothing of value. Whatever the excuse, we need to realize that having a will actually prevents what is feared most; that you will have no control over what happens to your hard-earned assets. Asset disposition through a will: You decide who gets your house, your car, your pets and your other assets, not the state. If you pass away without a will (“intestate”), by operation of law, the state where you live will make these decisions.

Naming a guardian for your minor children: Ensuring that your children are well cared for in the event of your death can be accomplished through a legal guardianship provision, which will allow you to:

however, many people choose their closest relatives. Just be sure to check your state laws to determine any residency requirements for persons serving as executors as many states require this person to be a resident of the will probating state. Update your will every three years, especially if you:

a significant life event (ex: marriage, divorce, ∙∙Experience ∙∙Name who you want raising your children sell a business) all of the members of your immediate family so it’s ∙∙Name to a different state since each state may have ∙∙Move easy to locate them different validity requirements (ex: the number of an individual as trustee over any financial witnesses required and whether it must be typed or can ∙∙Designate assets you might leave minor children

Naming an executor or executors of your will: The executor of your estate is commissioned with tasks such as determining debts and other claims against the estate, managing the estate assets, determining and paying all taxes, distributing the estate to beneficiaries, and complying with the state reporting requirements in a timely manner. If you know someone with a law degree or an accounting background, they may be a good choice to serve in the role;

be handwritten)

your mind about how your assets should be ∙∙Change distributed

∙∙Change the beneficiaries under the will

Still worried about deciding how your assets will be distributed? It’s important to note that your will has no effect during your lifetime, and that you can change it (or revoke it) whenever you want. CONTINUED ON PAGE 38 37

2. Create an advance healthcare directive (or living will)

4. Review and update beneficiary designations

A living will addresses your medical affairs, giving you an opportunity to expressly state the kind of medical care you wish to receive, and at what point you no longer wish to receive any care. This document is important to have in place in the event that you become incapacitated or are not able to speak for yourself. Issues that should be covered include: resuscitation, mechanical ventilation, tube feeding, dialysis, antibiotics or antiviral medications, comfort care (palliative care), and organ and tissue donations. Activation of a living will usually requires a certification by your doctor and another doctor that you are either suffering from a terminal illness or permanently unconscious before it becomes effective.

Naming a beneficiary for bank accounts and retirement plans makes the account automatically “payable on death” or “transferred on death” to your beneficiary and allows the funds to skip the probate process (that long, arduous process your will must go through). Beneficiary designations on life insurance policies, annuities, retirement plans, payable-ondeath accounts, and other assets will generally override any conflicting provisions in a will or trust. Thus, it’s essential to make sure all forms are checked and updated regularly – ideally annually.

3. Power of attorney (POA) There are several different types of power of attorney documents, in which you give an “attorney-in-fact” or “agent” the legal authority to make decisions.

power of attorney typically permits your agent to ∙∙General handle your affairs. The agent usually has the power to: buy and sell property, handle banking transactions, enter safety deposit boxes, file tax returns, settle claims, and purchase life insurance.

or “special” power of attorney authorizes your ∙∙Limited agent to act on your behalf only in certain, specified situations.

care power of attorney allows your agent to ∙∙Health make health care decisions on your behalf if you are unconscious, mentally incompetent, or unable to make independent decisions.

power of attorney, whether general, limited, or ∙∙Durable health care, may allow your agent to carry out the powers you granted, whether you have the inability to do so or not. Unless a power of attorney is made “durable” by specific language, your agent can only exercise a power that you are able to do. For example, if you’re in a coma and can’t sign a contract, your agent can’t sign either.

power of attorney is an alternative to creating ∙∙Springing a durable power of attorney, meaning the power granted

5. Put all of your important documents in one place Do you have a special pile of unorganized papers that you consider important but, like me, store carelessly under your bed or in your closet? If so, you know how challenging it can be to find important legal documents during a time of peace, let alone moments of dire need. I strongly suggest compiling all important paperwork (wills, trusts, POAs, etc.) and passwords in one location. This could be as simple as setting up an expandable file, or storing everything in one desk drawer, or it can be as secure as putting them in a bank safe deposit box. If you choose to put your papers in a bank safe deposit box, you should also keep copies in a file at home to ensure more accessibility. Either way, be sure to review your file each year to see if there is anything new that needs to be added.

6. Share your plans Do you wish for your daughter to have the wooden rocking chair in your bedroom? Want your son to make medical decisions when you are unable to do so? If you have gotten this far in our tips, you most likely know what you want, but have you communicated your desires, or jotted them down? Our final suggestion is to explain your wishes to important friends and family, especially if they might have a role to play, and let them know where you keep your important documents.

in the document only takes effect upon a specified event, condition, or date.

All power of attorneys can be revoked at any time and become void at the time of death at which time your will becomes the controlling document. Lastly, the laws for creating a power of attorney vary from state to state and may or may not require a notary public. 38

caringvoice.org • Summer 2015 • Taking Charge of Your Health

We understand this type of planning involves difficult decisions. While we hope you find these tips useful, they’re not legal advice, so if you need further guidance we encourage you to consult an attorney in your state or utilize LegalShield Services. All CVC-assisted patients are eligible for a discount when enrolling in this dedicated on-call law firm. Please visit http://bit.ly/LegalShieldCVC or call 585-314-3111 for additional information.

livingpah.com

TO SHARING YOUR EXPERIENCE Living PAH is a free resource offering information and tools to help you take a more active role in your care. It is a community where individuals, groups and programs unite in the idea that far more is possible when we work together.

Visit LivingPAH.com, which features a tips section that collects the experiences of patients, caregivers and family members dealing with PAH. You can learn from others or share some advice of your own. Your experience may be just what someone else needs to hear.

ENROLL TODAY AT LIVINGPAH.COM

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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