Sleep Health - Community Magazine, Summer 2016 by Caring Voice Coalition

Volume 5 • Issue 2 • Summer 2016 The Quarterly Publication of Caring Voice Coalition, Inc.

What You don't know about

Sleep Health Sleep 101: What makes for a good night’s sleep?

QUick tips: Easy things you can do to sleep better at night.

Plus: Staying healthy while you travel 80-year-old Don Stevenson walks across America for PH Get out the grill with these healthy recipes for your next cookout

Give meditation a try: Some basic tips for getting started.

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 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 | 4 Letter from the editor 5 President’s letter 6 Reader comments

8 Close up: Spencer Helms CVC Junior Developer Spencer Helms on why he’s drawn to software development.

9 Close up: Tracy Downing Board Member Tracy Downing explains his background and how he has enjoyed watching CVC grow in 12 years of involvement.

10 In your words: James Funk James Funk describes the great toll narcolepsy has taken on his life— and what keeps him motivated.

12 In your words: Cynthia Gathers Cynthia Gathers says her journey with cutaneous lymphoma taught her how generous other people can be.

14 Patient association profile A quick Q&A with Susan Thornton, Cutaneous Lymphoma Foundation’s chief executive officer.

16 At a glance: Infantile spasms Learn a few basic facts about this type of epilepsy specific to babies.

SLEEP HEALTH 18 Sleep 101 Find basic research explaining sleep concepts and mechanics—and how they impact you.

20 Sleep in America Explore stats from the Centers for Disease Control and the National Sleep Foundation on U.S. sleep habits.

22 Quick tips for better sleep Here are things to try—and what not to—if you want more sleep.

23 Sleep and chronic illness See how sleep plays a role in a few rare diseases.

24 Q&A: Sleep health A sleep specialist, Dr. Quentin Regestein, answers questions like when to see a doctor for sleep problems.

26 Coping with sleep apnea Read this before giving up on treating your obstructive sleep apnea.

27 Healthy eating

32 Health watch

Check out these healthy tips and recipes before you fire up the grill this summer.

30 Legal corner CVC Patient Advocate Nora Ciancio and Senior Patient Advocate Lauren Patrizio dispel common disability myths.

CVC Director of Medical Affairs Robert Mayfield on avoiding medication errors while traveling.

34 Walking with a purpose Don Stevenson, 80, has walked 4,000 miles for Pulmonary Hypertension Association.

36 Getting started with meditation Jessica Scalin shares a guide for beginning meditation practice.

38 How to be prepared for emergencies Ideas and resources to ready yourself for emergency situations.

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

Publishing Editor Kelli Yoder 888.267.1440, ext. 149 kyoder@caringvoice.org

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

Graphic Design Charlie O'Donnell 888.267.1440, ext. 130 codonnell@caringvoice.org

Please recycle this issue.

| Letter from the editor |

Wisdom of sleep

esearching sleep as this issue came together, I found myself an unexpectedly devoted reader of a number of blogs written by people with narcolepsy (or PWN, as they often refer to themselves online).

There is something haunting to me about these particular blogs. Each one I discover seems to reel me in with startling honesty and vivid depictions of daily experiences—narcolepsy-related or not. Their words make me feel connected to their trials and aspirations. I am frustrated for the 22-year-old who had to return home while teaching abroad in Spain when her medication ran out and doctors there couldn’t confirm her condition. She describes trying to convince herself the floors in a museum were not slanting and the faces around her were not distorting. (Narcolepsy can cause hypnagogic hallucinations as the brain begins dreaming while still awake.) I’m cheering on the Australian who has taken it upon herself to inform the public about narcolepsy, using her talent for turning complicated statistics into charming animations. And I am troubled to read in the blog of James Funk (who writes about his narcolepsy on page 10) that despite the lengths he must go to keep from falling asleep in most circumstances, his disability application was denied, and he worries about his ability to provide for his three sons. (Caring Voice’s disability team is helping him appeal. Learn more about disability and work on page 30.) I have also learned a lot about sleep from these blogs. What happens to PWN during the day—muscle paralysis, waking dreams—is what the body is meant to do during healthy sleep at night. I appreciate more how effortlessly my own sleep cycles must function. As I learn about the restorative significance of regular sleep to memory, mood and physical capabilities (pages 18-26), I also understand better just how narcolepsy can pull at every piece of a PWN’s life. These are people who have been betrayed by sleep—something most of us think of so affectionately. And I learned, too, about chronic illness in general. Pain or other symptoms from health conditions can have a big impact on sleep. So to some degree, any person whose sleep is constantly interrupted will experience negative effects. I hope some of the ideas in this issue can help. Finally, interlaced within all of these blogs is a hopeful consideration of how to make tomorrow better, along with a determination to flourish. Whether they know it or not, PWN and others with compromised health have hard-earned wisdom to share—some of which we try to capture in Community.

Kelli L. Yoder

caringvoice.org • Summer 2016 • Sleep health

| Letter from the president |

A healthier summer

here are many reasons to love summerâ&#x20AC;&#x201D;not least of all because some of its greatest qualities also lend themselves to healthier habits.

These midyear months give us more daylight to be out and active. The sun shines warmer for get-togethers with friends and family or restorative vacations. In-season fruits and vegetables are fresh and abundant. However, sleep is one area of wellbeing that can be easier to neglect in summer. Warm evenings are a good excuse to stay up a bit later, and summer travel often interferes with a consistent sleep schedule. No matter the season, in the United States we have a history of preferring long work hours and busy schedules over regular sleep. That may be slowly changing. Sleep health research has surged in recent years, helping us better understand what happens during sleep and how outside factors influence sleep (see page 18). The more researchers discover, the clearer it becomes just how important our sleep habits are to holistic health. Sleep, researchers have found, impacts our ability to form and hold memories, how well our body repairs itself or digests food, how well we drive or work, how patient we are and even how much food we eat. For those diagnosed with a chronic illness, it is worth taking note of something with such potential to improve our quality of life. Of course, when youâ&#x20AC;&#x2122;re fighting an illness, sleep, like many other parts of life, can also become more complicated. Chronic pain makes it hard to sleep, while using your energy reserves to ward off illness might mean you require more sleep. Sometimes sleep is all we can do when undergoing treatment. Whatever your unique experience with sleep, adding just a few of the good sleep habits found in this issue to your routine might help you enjoy this season a little bit more. I hope the advice on the following pages will stick with you as you travel, spend time with loved onesâ&#x20AC;&#x201D;and as you go about your normal routines long after summer is over.

Pamela Harris

| Reader comments |

Notes from the community Thank you, Lauren Patrizio (“Close up: Lauren Patrizio,” Spring Community), for all that you do to help pulmonary hypertension (PH) patients like me, and for all your help in assisting me. I am still trying to figure a lot out, and am learning more about PH. However, in just a 30-minute conversation with you I learned more than in the past four months since I was diagnosed. Gary Haskell Florida

I received my spring copy of Community today. What an informative magazine!

I’m a pulmonary arterial hypertension patient. I love reading Community. I always learn something.

Nina Amick West Virginia

Patty Lundy Hill North Carolina

Enjoyed Nora Ciancio’s article, “Understanding Disability Assistance” in the spring edition of Community. So nice to put a face with a name.

I loved the spring edition of Community—especially the article, “Invisible is Not Invincible,” by Dr. Robert Mayfield. The article was spot on.

Debbie Vostello Florida

Crystal Hurst Utah

Caring Voice Coalition is wonderful. The people there are amazing. And the Community magazine is great! I want to offer full “attaboys” for all involved in the organization and its publications.

I love your magazine and always look forward to it. I try to see that everyone in our pulmonary hypertension support group, Omaha Area PHA Support Group, receives a subscription.

Milli Washock Florida

Carol Gundersen Lindstrom Nebraska

caringvoice.org • Summer 2016 • Sleep health

Contact us If you have any comments or questions about this issue, or would like to tell your own story, please write to us!

magazine@caringvoice.org

Mail:

Caring Voice Coalition, Inc. 8249 Meadowbridge Rd Mechanicsville, VA 23116

CVC on the web: caringvoice.org

Exclusively on caringvoice.org Check out our weekly blog posts on a wide range of topics meant just for CVC’s community.

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

Yes. It’s time to pursue your goals.

| Close up |

Spencer Helms

Junior Developer

hen I first came to Caring Voice Coalition (CVC) a little over a year ago, my development experience consisted of writing small applications from tutorials I found online, such as a simple calculator. I’ve learned so much since then.

CVC operates more like a small town: When the weather is nice, I love to everyone knows each other, and every- be outside. I enjoy anything pertaining one comes together to solve problems. to water, whether it’s swimming in the

I work on CVC’s development team. This often means working with the other departments, especially Patient Services, to ensure the technological I was studying for a different career tools we build reflect exactly what is path within the information technolo- required to do their jobs. Our work gy field when I fell in love with writ- consists of design meetings and ing software. From the moment I tried internal discussions on implementing it, I couldn’t get enough. I was always the changes everyone wants to see to tinkering around with things, trying make our software even better. the best I could to understand the conI’m happy to say that I have been cepts. Eventually, I decided this was treated with kindness and respect at where I wanted to take my career. CVC, from the very first interview. I started applying for developer Everyone here knows that they are jobs everywhere I could, and most working to accomplish something companies didn’t give me the time of bigger than themselves, and that is day. After months of trying to make evident in everything that occurs here. the switch to development, I managed When I’m not working or studying, to obtain an interview with CVC. I had the opportunity to meet with several I like to play video games, especially of the wonderful folks at CVC, and I ones that involve strategy. I love to quickly realized that it was unlike any learn and solve problems, and video place I’d ever worked before. games provide an excellent opportunity to relax and unwind while applying my I previously worked mostly for large corporations; one place I worked brain to solving the various challenges for had over 10,000 employees in one a game presents. I recently started building. While I was respected and work on creating my own video game my work was appreciated, at the end as a side project, and it has helped of the day I was just another person in tremendously in my understanding of a sea of nameless people. In contrast, the work I do for CVC.

caringvoice.org • Summer 2016 • Sleep health

pool, a trip to the beach or going fishing on the lake. I think wilderness survival

would be an exciting challenge—to

shirk all the comforts we take for granted and survive (even if only for a

few days) purely on my skills to provide food, water and shelter for myself.

I think I enjoy being outside so

much because it reminds me of my

childhood. When I was a little kid, I used to run through the woods with

my sister all day long. We didn’t have

cellphones, and our only rule was, “Be back by dinner, or else!”

Today, technology pervades pretty

much every aspect of my life; I use it all day at work, and I use it to study

and relax when I get home. I try my best to unplug now and then, and take

time to appreciate the simpler things

in life. But I do love technology— learning how it works, how to fix it and, especially, how to make it work

for me—and I appreciate that my job at

CVC allows me to do what I enjoy. Just as is true with so many others, CVC gave me the chance to thrive when no

one else would.

| Close up |

Tracy Downing

Board of Directors

am a born and bred Texan. I site across the commonwealth. I also is amazing. Cheryl is a counselor and grew up in the Dallas area and enjoy playing golf, anything outdoors, has enjoyed my involvement with CVC lived there until age 30. During classical music, being involved in especially because of the relationships that time, I earned a degree in political church activities, traveling and going she has been able to form with patients. science from the University of North to movies. My wife, Cheryl, and I love Cheryl also finds their strength and Texas in Denton, a suburb of Dallas. to go ballroom dancing when we have courage impressive and inspiring. After four or five years in banking, I the chance. We met in Augusta, Ga., I have also enjoyed getting to know moved to Virginia Beach, Va., to in 2008, where I moved to work as an all the patients we’ve met throughout attend law and graduate school at attorney with the U.S. Department of the years and listening to what their Veteran Affairs (VA). We now live in challenges, hopes and dreams are. And Regent University. Nashville, Tenn., where I took another I’ve come to value the friendships I have While at Regent, I became friends attorney position with the VA in 2011. made with the other board members. with someone who knew of an orgaI have continued to serve on the nization called Caring Voice Coalition (CVC) with an opening on its board. CVC board all these years because it is “Here we are 12 or so years a service I can do, along with the other Based on the basic information I had later, and everything CVC has about CVC, I was interested in joining, board members, to find assistance and accomplished is nothing short and called for more information. After resources for patients with serious of miraculous.” learning more about CVC’s missions health conditions. I can’t imagine what it’s like to have a debilitating illness and goals, CVC sounded liked an orlike those that CVC services, and I’ve Lastly, to give an idea of how far ganization that I definitely wanted to never witnessed firsthand what it is CVC has come in just these 12 short be involved with. Here we are 12 or like for a family member to experience years, I still remember how one of the so years later, and everything CVC one either. My work with CVC gives first board meetings I attended was held has accomplished is nothing short me pride and joy knowing that in in a small conference room at a hotel. of miraculous. some way I’ve helped someone’s family And seeing CVC grow from that space After I finished my graduate and navigate their way through trying to to what it has now become—helping law degrees and passed the bar exam, I care for a loved one with a disease. more people, growing its employees moved to the Washington, D.C., area When we have the opportunity to and securing its own facility—is to work as a contracting officer with meet patients, Cheryl and I sit and nothing short of miraculous. It has the federal government’s Bureau of visit with them, and they sometimes been so rewarding to see how far the Indian Affairs. assume we’re patients too. But when organization has come in the last 12 I’ve always been a big history buff. they find out we aren’t, and that I’m on years. I’m thrilled and honored to be So when I lived in Virginia and D.C., the board, the number of compliments a part of it, and I look forward to the I visited probably every Civil War and praise I receive for what CVC does next 12 years, and the next. 9

| In your words |

Doors opened and closed

James Funk describes how narcolepsy changed his life— but didn’t change him

y journey with narcolepsy started in a pretty strange way: arguments with my wife. Now, when you have been in a relationship with someone for almost 20 years and you have three children, arguments happen. But we had some strange arguments.

36, I was no longer able to provide for my family.

When initially diagnosed, my wife and I thought I would have to take some medications, but overall things would be fine. We could not have foreseen all the symptoms, or the severity of the symptoms I would encounter. The two sympWe were arguing about whether or not we’d had certain toms that bother me the most—mainly because they affect conversations. My wife kept telling me that we had just me pretty much every minute of every day—are my memdiscussed something and there was absolutely no way I ory and my speech. My memory is awful. I struggle with didn’t remember it. I was telling her she was crazy: I would names, trying to remember things from my past, trying to remember if we had just had a conversation. We both were remember things from yesterday, simply trying to remember certain that we were right, though neither of us could prove it. anything. The memories are still there, but I can’t access And then I started repeating things. I would have a con- them when I want to, and once I do access them I lose them versation with someone, and minutes later start it over again. almost immediately. My memory also affects my speech. Sometimes I had a funny feeling I was repeating myself, but nothing concrete “We could not have foreseen all enough to stop talking. Finally, I had no choice but to give in to my wife’s the symptoms, or the severity of request that I find a diagnosis. the symptoms I would encounter.” I had to see seven specialists—two pulmonologists, four neurologists and one cardiologist—to get a diagnosis. I have been diagnosed with sleep apnea and narcolepsy with cataplexy, in addition to a dyslexia diagnosis from childhood. Pretty much every doctor I have seen has been somewhat stumped. I have heard the phrase, “nonstandard symptoms,” more times than I can count.

Narcolepsy has had very major effects on my life that others can see. Within 17 months I went from what my wife and I considered to be a very mild narcoleptic, to having such severe symptoms I could no longer work. My initial diagnosis was in July 2014—and by December I could no longer drive. I could not stay awake while sitting in a car. By November of 2015, work became impossible. At the age of 10

caringvoice.org • Summer 2016 • Sleep health

I think that I am a relatively intelligent person; I graduated summa cum laude with a bachelor’s in business while working full time. At my job as a quality manager at a machine shop, I dealt with many people every day: customers, suppliers, auditors, etc. I was almost never caught off guard, and if I was, I could normally talk my way out of it. Now, during most conversations, I have to stop talking in order to try to find the word that I want to use. Other times I completely lose my train of thought and can’t recall what I was talking about. Many times I feel like an uneducated buffoon that does not know how to talk. Unfortunately, memory and speech are not the only things narcolepsy affects in my life. There are also some

| In your words | pretty significant physical symptoms. I can no longer stand in one place. If I try, my body starts to sway forward and backward. I know that it is happening but I am not able to stop it. Many times I have to grab something to keep myself from falling. I always have to be very aware of my surroundings in case I sway too far. I have to be careful when walking because my knees buckle quite often. Having narcolepsy with cataplexy means I suddenly lose control of certain muscles. Most days, simply walking across my living room, my knees will buckle multiple times. I have to be extremely aware of where I am at all times. No matter what I am doing I have to be careful. I also have symptoms others cannot see. I have had multiple hallucinations, the worst being when I thought my son was not following directions causing me to scold him. Unfortunately for me, he was following directions. I know this because my wife was with him and confirmed it. My sleep is all messed up. Sometimes I sleep all day and other times I can’t sleep at night. I can only sit if I’m in a rocking recliner because my upper body is in a constant state of motion. Of course, the recliner also increases the likelihood that I will fall asleep. If I sit, I have to use my tablet at all times. I need two or more things actively going on to keep my mind from putting me to sleep. I am no longer able to simply sit and watch something on TV with my family. My children’s school events pose another problem. I have to keep moving, so I end up jogging in the back of the room. There is not a single part of my life that narcolepsy does not affect. But all is not lost! While narcolepsy has closed many doors for me, it has opened many others. I no longer work, but I am able to see my wife and kids much more. And if I am in some sort of constant motion, my symptoms are muted. This means I can play with my children outside if the weather allows. The key is to simply not stop moving. Narcolepsy has provided me with time and opportunities to help others—something I always meant to do but didn’t. I have taken part in online conversations, offering advice and support. I attend a support group. My sister was also recently diagnosed with narcolepsy, and I am trying to help her navigate the journey with fewer bumps in the road than I experienced. Narcolepsy has allowed me to write (as long as the TV is on). I blog almost every day. I am slowly working on a book

about my journey. Writing helps me cope with my symptoms and life changes, and is another platform to help others. Narcolepsy has broadened my social network. I have met people through online support groups. In my in-person support group, I have made good friends, and met some of their families, giving me a better understanding of what it’s like to try to help those of us with narcolepsy. I have met so many inspirational people, people with powerful stories. I have met people with narcolepsy and other diagnoses through Caring Voice Coalition. No matter how hard things were, these people kept fighting the battle with their disease. I have probably met more people in the last 17 months than I had in the previous 34 years of my life.

James Funk with his wife, Angie Funk, and their three sons, Anthony, 18, Eric, 13, and Alex, 8, stand in front of their home before a trip to Minnesota last June.

For me, two things are key to continuing to win my battle with narcolepsy. The first is the continued support of my wife and family. Without their support, I don’t know where I would be. They help pull me through on my bad days, and provide me with a constant drive to keep fighting. The second key is that I had to change my mindset. I had to stop looking at the future, stop worrying about what could be, stop worrying about what has happened. I had to focus on the now; I had to start living in the now. If I live in the now, things are much easier. I remind myself daily that I woke up today—and how grateful I am for that. Narcolepsy has changed many things in my life, but it has not changed who I am. Narcolepsy may have closed many doors in my life, but has opened just as many. In many ways, narcolepsy has made me a better person. No matter what challenges you encounter, always remember: tomorrow is another day. Always remember, you are still you! Read James Funk’s blog at jfunk29.weebly.com.

| In your words |

Love in action

Cynthia Gathers describes the challenges of having cutaneous lymphoma—and what the diagnosis taught her about love

’m 52 years old. I was diagnosed with primary cutaWe started localized radiation and by this time I had deneous anaplastic T-cell lymphoma on July 3, 2013. I re- veloped a lump behind my ear and another on my shoulder. tired May 31, 2015 from the local Department of Social They were removed, biopsied and radiated. Then I had anServices after nine years as their primary telephone operator other one grow under my chin. My doctors decided to stop and administrative assistant. radiation because they were chasing them and not curing I don’t have any children. I do have Deuce, and he has them. We started an experimental drug. It did nothing. I four paws. He’s a black and white tuxedo cat who is spoiled still had the lumps and it gave me a very bad case of neuroprotten. That is my child. He is very protective. He’s very athy. It got to the point where after about a year I couldn’t nurturing to me. My cat can pick up the energy of what I’m walk because the neuropathy was so bad I was losing my going through. The days that I don’t feel good, he’s a very balance and falling. My legs were swollen. When the treatgood cat and he ministers to me, and the days I feel good, I ment stopped the cancer spread again. have to constantly cater to him. My doctor said there was no more they could do with I have two cousins, both male, who have the same type of chemo, and they began talking about a bone marrow translymphoma I have. We’re all on the same side of the family. plant. I visited my cousin’s doctor and he put me on a tradiWe’re all paternal, second cousins. One is cancer free. He tional kind of chemo in 2014. In the meantime I was given went into remission six months ago. My other cousin, his steroids and other things to keep myself going. I retired afcancer is back. He’s not doing that well. ter that treatment beMy journey started in April of 2013 when I developed cause while we were a pimple on my face and I tried to pop it and it wouldn’t waiting for things to pop, it bled. When I went to my family doctor—I didn’t be in remission, I make a special trip, but for my regular appointment—he found five lumps. A said, “We’ll get you some antibiotics and we’ll clear that up.” doctor biopsied two But the pimple didn’t go anywhere. So he said, “We’ll and they came back call a dermatologist.” The dermatologist suggested cortisone. with cancer. So I was By this time I had developed one on my shoulder, so he gave set up for a new cheme a shot on my shoulder and face. He said it would be OK. mo. It’s a four-hour I was planning on going to a family reunion in August. infusion I did once a By June the blemishes hadn’t gone away. I was very vain and week for eight weeks didn’t want pimples on my face when I went. So I said, “I’ll this spring. call my grandmother’s surgeon and see if he’ll lance this pimple.” He removed what was on my face and the one that was on my shoulder and he looked at them and said, “This is probably just a sebaceous cyst, but I’ll send it out for a biopsy anyway.”

The biopsies came back positive for lymphoma. What I thought was a pimple was about the size of a pingpong ball and required eight stitches to get out of my face. 12

caringvoice.org • Summer 2016 • Sleep health

I hope I go into remission—and stay there. That’s the problem I’ve been having. The chemo will knock it into remission, to where I’m not feeling any pain or anything, then all of a sudden, a knot grows somewhere and there’s cancer again. My body is worn out and after almost two years of this … I’m just tired. And the neuropathy is debilitating to the point where I now walk with a cane and have no feeling in my feet except tingling and pain.

| In your words | That’s pretty much my cancer journey. It involves my best friend taking me to treatment, sacrificing her Fridays, driving 85.7 miles every week. She is very faithful in taking me to the doctor and making sure I get to all of my medical appointments. She has been a very best friend. When you have lymphoma there are days when you just really don’t feel good. You just do the best you can. You just take your time. It’s a challenge, but I’m winning that battle. I do a little bit at a time and I keep going. I have learned that it’s not going to beat me—I’m going to beat it. It’s a long journey I wouldn’t wish on my worst enemy. I feel that this time the cancer has to go into remission, because I don’t want to keep doing this. I can’t say it will go into remission, but I have plenty of hope.

We all need somebody and we all need to love one another.”

lab work never showed any abnormalities. My family doctor was upset and very apologetic because he didn’t diagnose the lymphoma. I told him it wasn’t his fault—I wasn’t showing signs of being sick. My church has been very supportive. They call and they come visit. My family has been a help. My friends have been a blessing. I find joy in the people God has sent in my life. They have shown me that they will do what it takes to help me get to where I can stand on my own again. God has sent people who just genuinely love me and prove it with their actions. That in itself is more amazing than anything else I have ever encountered. My gas hot water heater died and I was told it would be $1,000 to get it replaced. A plumber friend said I could get an electric hot water heater for about $300. So I said, “OK, that saves me a lot of money.” But I didn’t buy it because I didn’t have the money. One of my friends asked about it. Then she said, “Merry Christmas,” and gave me a check for $300. Then one of my church members, his wife offered to pay the $100 service fee. People don’t do that unless they love you.

Another friend said, “Would you like to go with my family to Disney World? You don’t have to pay for anything but spending money.” Then My daily life bemy cousin sent me a Visa card with $200 on it. Another fore chemo was fan- cousin sent $100. People just pour out their love. It has been tastic. I’m a minister amazing. The Lymphoma Society has been wonderful. Carof Christian educa- ing Voice has been a blessing. Those are just a few examples. tion at my church. I There is an outpouring of people and organizations that help. was preaching and It’s just different than what life was before. Because beteaching on a regular basis and we were fore I didn’t need people. Or I thought I didn’t need people. doing several outreach programs, so I was doing a lot. I was We all need somebody and we all need to love one another. taking on more at work. I gradually had to give up every- Sometimes I sit in awe and just praise God because it is only thing, or adjust how much I did, because I didn’t have the his grace and mercy that allow these people to come into my energy to do much. With the neuropathy, I could no longer life. We have no other way of showing people we love God do my dance group because I couldn’t dance. Cancer robbed than how we treat one another. That proves to God that we love him when we treat one another with love and kindness. me of a lot of activities. And I have discovered there are people who truly love God. I want others with this kind of lymphoma to know you What I learned with cancer is, I’m not promised any day, have to watch your body. Your body can show signs of the cancer in places under the skin. If it grows, contact your because I don’t know what day the cancer’s going to take me doctor, because it comes with no feeling. I showed no symp- out of here, or something else is. But I’m so grateful to God toms of lymphoma before the pimple. I didn’t get sick. My to let me enjoy a new day, every day that he does. 13

| Patient association profile |

Cutaneous Lymphoma Foundation Q&A with Chief Executive Officer Susan Thornton

What is Cutaneous Lymphoma Foundation? How did it launch? Cutaneous Lymphoma Foundation (CLF) is first and foremost a patient education, support and advocacy organization. It began when Judy Jones was diagnosed with the most common variant of cutaneous lymphoma, mycosis fungoides, in 1990. She was frightened and didn’t know where to turn to educate herself, or how to connect with other people diagnosed with cutaneous lymphoma. She started an online listserv and began to meet others with similar concerns. From there, she connected with Dr. Stuart Lessin, a specialist in cutaneous lymphoma, and together with $5,000 from the wife of one of Dr. Lessin’s patients who had died from the disease, they began what was called the Mycosis Fungoides Foundation in 1998. The organization was renamed a few years later to the Cutaneous Lymphoma Foundation to include all forms of cutaneous lymphoma under one patient support umbrella. What services does CLF offer?

opportunity to learn about the disease, treatments and clinical trials, as well as meet people with similar challenges in an informal setting. These live programs have been the cornerstone of CLF’s patient education services, and are now live streamed so people around the world can participate. A calendar of the events can be found on clfoundation.org, along with indepth information about cutaneous lymphoma and specialty treatment centers worldwide, and an Online Learning Center with video learning on a wide variety of topics. We offer printed information too, including a wonderful guidebook for patients and their families, as well as a new patient packet we can send if requested. We publish a newsletter, The Forum, three times a year and a monthly e-news with the latest information of interest to our community. We also offer one-on-one support to anyone who calls or emails. Sometimes, people just need to talk and ask questions or get guidance. All services are provided free to patients and their loved ones, whether it is a live event, printed materials or one-on-one support.

In its 16 years, CLF has hosted regular, live patient education programs around the country, in Canada, the United Why is the work of CLF Kingdom and even Australia. These important? events include expert forums, evening A small patient population makes it Q&A programs, one-day programs important to continue to innovate and a two-day patient conference. and evolve programs so that everyone They bring patients and their loved diagnosed with this disease can have ones together with experts in the field access to the best information from the of cutaneous lymphoma. It’s a great comfort of their own homes. One of 14

caringvoice.org • Summer 2016 • Sleep health

the most frightening things a person can do when diagnosed is Google “cutaneous lymphoma”—which is why the goal of CLF is to be the one-stop education and information source for patients and families. The constantly updated information on our website and in our programs is reviewed by experts in the field and uses easy-tounderstand terminology. What is your role at CLF and how did you become involved? I’m a patient who has been living with cutaneous lymphoma for the last 25 years. I was invited to be on the CLF Board of Directors in 2008. In 2011, I had the unique opportunity to leave my corporate career in health care software and join CLF in a consulting role, managing the programs and services. When the CEO resigned in 2012, the board asked if I would step into that role, where I’ve been since. It is truly an honor and pleasure to be in this position and help take CLF to the next phase in its evolution. I have the privilege of working with an amazing, small, collaborative team of dedicated people both on our staff and on the board. I certainly wouldn’t be able to accomplish everything on my own. What are some important things for people to know about cutaneous lymphoma? There are many, but one of the most important is that cutaneous lymphoma is

| Patient association profile | often misdiagnosed as more prevalent skin disorders like eczema, psoriasis, dermatitis or even bug bites. It’s important to understand that if someone has a rash that doesn’t go away, is itchy and shows up in areas on the body that do not get much sun, they may want to ask their dermatologist to do a biopsy (preferably a punch biopsy in an area that has not been treated with topical steroids) to rule out cutaneous lymphoma. For most people who are diagnosed, the disease is early stage, is very treatable, and does not progress to a more aggressive version. The general quote is, “Most people will die with this disease and not from it.” However, quite a few variations exist, and some can be aggressive. It is very important people see an expert in cutaneous lymphoma, even if treatment is managed locally. What kind of research has CLF done? What research is underway?

ous medical symposia throughout the year. We hope to keep expanding our research grant efforts.

impact of dealing with this lifelong disease. That deep compassion and caring for the overall health of patients is a common trait of the specialists in this field. We are truly one big, global, Do you connect patients with connected community supporting each clinical trials? other in whatever way we can. That’s We do our best to list the active cutanepowerful, and I think a bit unusual. ous lymphoma clinical trials currently recruiting patients globally on our website. We also share information about How can patients and their what is in the clinical trial pipeline, and families be involved with CLF? we help interested patients connect to I would encourage everyone to attend open trials. Our programs include a one of our live events, if at all possible. discussion about clinical trials, their They truly are magical programs. The importance and what patients should information is valuable, but it’s the conthink about if they are considering one. nections, discussions and interactions between everyone in attendance that is really special. If people are interestWhat are one or two stories ed in fundraising activities or serving that stand out to you from your in a volunteer capacity, they can let us work with CLF? There are a ton of stories that stand know via email, info@clfoundation.org, out. It’s the best thing about the work or phone, 248-644-9014, ext. 1.

I do every day: talking to patients, their families and care providers. One of Is there anything else you’d like my favorite stories is about a patient in people to know? While CLF has primarily focused on Louisiana. She called late one night in There is hope. A lot of research is being patient support and education, we have a panic and was totally amazed that I done to understand the biology of the funded several research projects, inactually called her back from an airport disease, how it works and what targets cluding: a quality of life study that was where I was between flights. I think the new therapies should focus on. Many conducted by Dr. Marie-France Demost amazing thing is her joy for living. new clinical trials are underway which mierre from Boston University School No matter what challenges she faces— we hope will result in new, targeted of Medicine, an epidemiology study and she has had many—she inspires me treatments that will make managing conducted by Dr. Martin Weinstock to keep moving forward doing what we this disease easier and more successfrom Brown University in Providence, do to support people in their journey. ful for patients. Finally, although this R.I., and a mycosis fungoides epidemiShe is truly a shining light. diagnosis can be overwhelming and ology study conducted by Dr. Emilia A health care provider that keeps frightening, patients and their loved Hodak from Ben-Gurion University gas cards and gift cards in her desk ones are not alone. We are here alongof the Negev in Israel. More recently, we have funded small grants for inno- drawer also comes to mind. She gives side them, step by step to support them. vative research through our clarions them out to patients who are struggling We are in this together and together (Curing Cutaneous Lymphoma by with everyday expenses because of the we will thrive!

Advancing Research, Innovation and Offering New Solutions) award program. We also offer travel awards for young investigators who are presenting cutaneous lymphoma research at vari-

Susan Thornton serves as the CEO of Cutaneous Lymphoma Foundation, based in Birmingham, Mich. She spent 28 years in the health care information technology field and has been living with cutaneous lymphoma for 25 years.

| At a glance |

infantile spasms age-specific epilepsy where seizures usually are in repetitive clusters

90 2 10,000

characteristics

of cases start by age 1

out of every

babies born will have infantile spasms

body stiffening bending & jerking head nodding

diagnosis medical history

video eeg

previous brain injury or infection, description of seizures, home video of seizure activity

recognizable pattern, called hypsarrhythmia, when spasms aren’t happening is an indicator

possible treatments

hormone treatments 16

anti-seizure medication

caringvoice.org • Summer 2016 • Sleep health

surgery

ketogenic diet

sources: national institutes of health, epilepsy foundation

| Sleep health |

Sleep Health page 18

Page 20

page 22

To understand sleep better, start with these four basic facts.

Married people sleep better and other insights into American sleep patterns.

Try these tips for getting better sleep tonight.

page 23

page 24

page 26

Chronic conditions impact sleep in a variety of ways.

Sleep specialist, Dr. Quentin Regestein, answers questions about sleep health.

Consider all of your options before giving up on treating obstructive sleep apnea.

Sleep 101

Sleep & Chronic Illness

Sleep in America

Q&A

Quick tips

Sleep apnea

| Sleep health |

Sleep 101 Get to know the basics of sleep—from what happens during each sleep cycle to how light impacts sleep. Learning this information is the first step to improving your own sleep patterns, and knowing how they impact your day-to-day health.

1. Your sleep cycle Tracking your sleep cycle can help you improve your energy. Have you ever wondered why on some days getting out of bed is so much harder than on others—no matter how much sleep you’ve had? Your sleep cycle likely has something to do with it. According to the National Sleep Foundation, if your alarm goes off while you are in the sleep stage where you sleep the most deeply, you’ll wake up feeling groggy. Understanding and tracking your sleep cycles can help you wake up feeling your best. First, learn the basic stages of your sleep, which repeat four to six times throughout the night. Then, you can begin to recognize if you are waking up during the wrong cycle, and adjust your bedtime accordingly. Stage one: Your body starts slowing down into a light

sleep. Muscle twitches and falling sensations happen in this stage. You are not quite fully asleep, or fully awake.

Stage two: Sleep begins. As you prepare for deep sleep,

your temperature drops, eye movement stops, muscles relax and heart rate slows. Stage three: Once you are in a deep sleep, there is less

brain activity, and it is harder to wake up. Your body is relaxed, becoming immobile, and works to repair tissue. Sleepwalking can happen in this stage. 18

caringvoice.org • Summer 2016 • Sleep health

Rapid-Eye Movement: During REM sleep, your brain activity speeds up as it works to process experiences from the day and store them in your memory. Your eyes move rapidly. You are immobile and most dreaming happens in this stage.

helpful Tip: Many activity trackers, certain apps and even sensor pads for mattresses can track your sleep cycles. Better yet, you can set these to wake you up during the lightest part of your sleep cycle to help you start the day feeling more refreshed.

2. sleep and health Sleep can impact your quality of life, both short and long term. When we miss sleep, “we pay a price with our ability to learn, our health and safety, and our quality of life,” says Healthy Sleep, an informational website from the Division of Sleep Medicine at Harvard Medical School in Boston. Here are just a few of the ways missing sleep can impact your health: • Warding off sickness: Sleeping less than six hours a night increases your risk of developing a cold when exposed to a virus, found a study of 164 healthy men and women, ages 18-55, published in the journal, Sleep. • Weight gain: A six-year study published in Sleep also indicated long sleep times could increase your risk of

| Sleep health | future weight gain. Research indicates people may have an optimal sleep time range. • Cognition: Sleep deprivation compromises your reaction time and memory, according to a study in Occupational and Environmental Medicine. Response times after 17-19 hours without sleep were found to be up to 50 percent slower than normal. Helpful tip: Required sleep times vary from person to person (see page 20). During a time when you’re well rested, sleep until you wake up naturally. Count the hours you slept and use that as an estimate of how much sleep your body requires each night.

3. Light impacts Sleep Technology makes it hard to fall asleep—and to sleep deeply. You’ve probably heard by now that you shouldn’t be in front of a screen for about the last half hour before you go to sleep. But do you know why? Our bodies are wired to be alert during the day when it is light out, and start to relax into sleep as the sun goes down. During the day, according to the National Sleep Foundation, our eyes perceive light in our environment and suppress production of a sleep-inducing chemical called melatonin. Most electronics emit a certain kind of blue light that is particularly good at interfering with melatonin production.

Helpful tip: Certain monitors or add-ons for your browser or operating system can block some blue light, or allow you to block it in the hours before bedtime. But to completely avoid this disruption and improve your chance of high quality sleep, make your bedroom a device-free zone.

4. Sleep and memory Your brain restructures and reorganizes while you sleep. Growing research in the last decade or two has focused on what happens while we sleep. Findings have confirmed an early hypothesis that sleep has a strong connection to memory. During the active REM stage of sleep, the brain processes memories and decides which to turn into longterm memories, as well as consolidates them to make room for new ones, according to a 2015 literature review on sleep and memory published in Frontiers in Psychology. This means even just a few hours of sleep lost can impact your ability to recall memories formed during the day by up to 40 percent, says the National Institutes of Health. In other words, because sleep is so essential to memory forming, it is also crucial to learning, then recalling new or old information (a language, test answers, names), as well as storing and successfully making use of new or old skills (dancing, knitting, finding your keys).

Melatonin Suppression

1.0 0.8 0.6 0.4 0.2

Helpful Tip:

0 400

Melatonin also helps us sink into the kind of deep sleep required for REM cycles and the impact of blue light can last a long time. Thus, even if we fall asleep more easily while staring at a screen, the time we are asleep won’t be as restorative as it should.

450

500

550

600

650

Wavelengths emitted by digital screens (nm)

700

Getting enough sleep is more likely to help you with that big test or presentation than staying up late to study more.

Hours of sleep

recommended by age

7-8

Seniors

7-9

Adults

8-10

Teens

9-11

School-aged

10-13

Preschool

11-14

Toddlers

12-15

Infants

14-17

Newborns 0

34.8%

6hrs or less

57.2% 6 to 8hrs

How much sleep are adults in America actually getting?

Over 8hrs

1 in 3 adults

are not getting enough sleep. 20

caringvoice.org â&#x20AC;˘ Summer 2016 â&#x20AC;˘ Sleep health

| Sleep health |

People who get enough sleep are more likely to be...

Employed

Educated

On average worknights the U.S. only sleeps

Married

6HRS & 31MIN

People with chronic pain are nearly four times more likely to be diagnosed with a sleep disorder than the general population.

Are you getting enough sleep? Read pages 18-26 to see what you can do to get better sleep. Sources: Centers for Disease Control and Prevention, National Sleep Foundation

| Sleep health |

Quick tips for better sleep

ack of sleep can impact mood, relationships, productivity and quality of life. But for people with chronic conditions that affect sleep quality, sleep deprivation can be a reality of life. Stress, pain and poor health all correlate with less sleep, according to the National Sleep Foundation (NSF). Just because you have a disease that impacts your sleep doesn’t mean you can’t seek some help to improve sleep. Talk to a doctor. And in the meantime, consider some of these research-backed tips and tricks.

Exercise

Meditation

Regular exercise helps you sleep better, almost always.

Practicing meditation can have longterm impact on your ability to quiet your body and mind, helping generate more regular and restful sleep patterns, found a trial published in the journal JAMA Internal Medicine. (See page 36 for an intro to meditation.)

»» Less active people were much more likely to experience insomnia in a long-term study of more than 1,000 people published in the Journal of Sleep Research. »» Even just 10 minutes of exercise a day can make your time asleep more restful, according to the NSF.

Supplements

Temperature Check the thermostat. People on average sleep best when the room is 60-67 degrees, says the NSF.

Melatonin supplements can help with jet lag, shift-work sleep woes, insomnia and sleep while traveling, accord- Acupuncture ing to the NSF. Check with your doc- Try acupuncture. Studies, while limit»» But doing a few relaxation yoga poses can tor before trying melatonin, as it can ed, have consistently shown great imcalm your body down, the NSF says. interact with other medications. provements in insomnia with the use of acupuncture, according to a literature review in the journal ComplemenFood & Drink Aromatherapy tary Therapies in Clinical Practice. Before bed, try inhaling lavender es- Tart cherry juice has been linked to sential oil, or boiling fresh lavender better sleep, because it’s high in melwith water to produce the scent. Sleep atonin, found a study in the Journal of Alcohol quality improved for 50 nurses during Medicinal Food. Avoid alcohol before bed. Alcohol can eight weeks of lavender-based aromaCertain foods—including dark relax you, but multiple studies have therapy, compared to another 50 who chocolate, milk, nuts and turkey— shown it interferes with sleep quality, did not receive the therapy, in a 2015 trigger the brain to produce sero- even increasing sleep apnea in asympstudy, published in the Journal of Nurs- tonin, which can help you feel happy tomatic men in a study in the American ing & Healthcare Research. and relaxed. Journal of Medicine. »» The NSF doesn’t recommend intense activity just before bed for most people. It increases body temperature and has a stimulating effect.

caringvoice.org • Summer 2016 • Sleep health

| Sleep health |

Sleep and chronic illness

are diseases and their treatments often impact sleep in some way. Some conditions cause insomnia, while others interfere with sleep quality. Anyone who has experienced compromised health knows that many kinds of sickness leave you exhausted, sometimes needing more sleep than you have time for. Here’s how sleep plays a role in a few chronic diseases.

Narcolepsy Narcolepsy is a condition directly related to the sleep cycle. People with narcolepsy have little control over their sleep-wake cycles, according to the Narcolepsy Network. Without treatment, sleep can strike them at any time—and many waking hours are sleepy ones. While falling asleep can be easy, once asleep, people with narcolepsy don’t fall into the cycles they need for restorative sleep. And while awake, they sometimes fall into REM, experiencing hallucinations or sleep paralysis, where they are unable to move, but fully awake.

Obstructive Sleep Apnea Obstructive sleep apnea is associated with narcolepsy, as well as pulmonary hypertension and idiopathic pulmonary fibrosis, according to the National Institutes of Health. It causes acute increases in pulmonary artery pressure while asleep, which leads to disrupted sleep as your body wakes itself in order to breathe.

Thalassemia Most people with thalassemia experience fatigue, says the Mayo Clinic. People with thalassemia don’t produce enough hemoglobin. This leaves the body working harder to get organs to function. There is also evidence that thalassemia patients develop sleep apnea or other sleep disruptions, further increasing daytime sleepiness.

Huntington’s Disease Sleep disruption is very common in people with Huntington’s disease. More research is needed to determine why. One 2014 study published in the journal Circadian Medicine hypothesized that the disruption is in fact an integral part of the disease, rather than simply a side effect, and suggested that treating the sleep dysfunction could be very beneficial to patients.

Complex partial seizures Sleep deprivation can provoke seizures in people with complex partial seizures. In fact, a study published in Neurology found that complex partial seizures happened almost twice as often during sleep than while awake. Changes in brain activity and hormones are factors involved in both sleep and seizures.

Cutaneous lymphoma Because cutaneous lymphoma effects the skin—itching or pain resulting from skin cracking or burning are common and can make sleep difficult. One study published in JAMA Dermatology suggested focusing on improving quality of life, including treating sleep problems, will improve overall health in cutaneous lymphoma patients.

Want to know more about how sleep affects you? Visit our Pinterest board for more: ÎÎ Stats on sleeping and chronic illness. ÎÎ Advice for a better night’s sleep. ÎÎ Visuals explaining how sleep works. pinterest.com/caringvoice/sleep

| Sleep health |

Q&A: Sleep health Dr. Quentin R. Regestein, associate professor of psychiatry at Harvard Medical School in Boston, is clinically focused on sleep, attention and fatigue disorders. Here he answers questions on sleep and health.

What are some general rules for good sleep hygiene? • Get up at the same time every day to align yourself with the way the world goes around. • After late bedtimes, keep a record to see if brief afternoon naps refresh you, or worsen your sleep. • Exercise, exercise, exercise—no other method increases the deepest and most restorative stage of sleep as well. • If you sleep poorly, try to ditch caffeine; it puts you on a roller coaster. Some people’s insomnia disappears after they quit drinking coffee at breakfast. The same is true for tea.

What signs can people watch for that would indicate a sleep issue? If you wake up feeling exhausted no matter how long you slept, your sleep was either too light or repeatedly interrupted. People easily forget what happened during sleep. Many people use the bathroom a lot during the night. Some medications or other conditions may amplify the tendency. This can cause nighttime discomfort. Relief of urinary frequency and urgency depends first on your medical provider making a diagnosis. If you awaken gasping for air, you probably have sleep apnea. This common, serious condition risks high blood pressure, brain damage from getting insufficient oxygen during the night and motor vehicle accidents from sleepiness. It also risks apathy; many sleep apnea patients do not recognize anything is wrong.

When should a person seek medical help for

• Diet can alter the sleep of particularly sensitive peo- sleep-related problems? ple. Limit evening alcoholic drinks. There are rare People can seek medical help when they desire more sleep, instances where having chocolate ice cream at dinner snore, cannot wake up, feel continually fatigued, self-medicate, delays sleep. A few people feel wired after eating sweets have bad dreams or think they suffer from poor sleep. near bedtime. They can visit a doctor as soon as they feel that their sleep • Sleep with your upper body elevated slightly after large, insufficiently refreshes them, or if troublesome symptoms late dinners to avoid acid reflux. happen during the night. Often the affected person’s bed • To cue your body clock, avoid lit device screens during partner detects symptoms before the sleeper does. the evening. • Plan events—sleep gets deeper after more interesting days.

Do medications interfere with sleep? Are there instances where it’s OK to use them?

• Obesity and tobacco worsen sleep.

Avoid decongestants, which can cause sleeplessness, in favor • Some find not lying awake in bed for too long helps— of nasal irrigation and allergy meds as needed. Be aware find a routine that works for you. For instance, you that some allergy medications induce sleep. might perform some task, return to bed and then nap Beta-blockers—standard meds used to treat many the next day as needed. conditions, such as high blood pressure, heart rhythm • If you cannot turn off thinking after bedtime, try disturbances, hand tremor and stage fright—interfere with mindful meditation, slow and maximally deep breath- the actions of key brain neurotransmitters that regulate the ing, or progressive muscle relaxation exercises. depth and type of sleep. 24

caringvoice.org • Summer 2016 • Sleep health

| Sleep health | SSRIs (for depression) and systemic corticosteroids (to reduce inflammation) can impact sleep. These drugs are all perfectly OK to take unless they cause adverse side effects. Sometimes they induce upsetting dreams. When adverse effects happen, talk to your prescriber. You may be able to take one of the many alternative drugs that help relieve these symptoms.

should find the reasons for your fatigue; you can then devise a care plan together.

Do you have advice for people with chronic pain to improve often interrupted sleep cycles?

Chronic pain problems generally need expert help. Relief comes more from active physiotherapy (swimming, back strengthening) than passive treatments (massage, supportWhat special sleep considerations can people ive belts). Neuropathic pain requires specific diagnosis and with chronic or rare diseases take? treatment. Finding relief for most pain problems requires an Heart, lung, endocrine and nervous system problems organized, empirical search (e.g., tracking pain self-ratings commonly impair sleep. Poor sleep is one aspect of neurode- or logging activities). generative disorders. Meds are prime suspects—even some It is important that pain not become a way of life. Having antibiotics can reduce sleep or induce nightmares. Aggre- something that draws one away from concerns and forward gate rare problems often add up. to inspiration can resolve pain. Nap if you get insufficient sleep. No amount of sleep will relieve fatigue, which can be measured by your inability to complete tasks once started. This problem requires different solutions, depending on the cause. Your health care provider

Access to Assistance anytime, anywhere. Cloud 9 is Caring Voice Coalition’s free, secure online portal. Log on to Cloud 9 at any time to apply for assistance, access all of your CVC-related information and communicate with a representative.

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

Dr. Quentin R. Regestein is a psychiatrist at Brigham and Women’s Hospital in Boston. He is on the advisory board of the Narcolepsy Network. As a member of the DSM-III-R and DSM-IV task forces, he helped define sleep disorders.

| Sleep health |

Coping with Sleep Apnea

bout 18 million U.S. adults have sleep apnea, according to the National Sleep Foundation, and researchers believe many more never seek a diagnosis. The most common type, obstructive sleep apnea (OSA), occurs when throat muscles relax into and block the airway during sleep. OSA is most often treated with continuous positive airway pressure (CPAP) machines that push oxygen into the nose and/or mouth during the night to keep the airway open and prevent sleep interruptions.

3 types of CPAP

Nasal

Oral

Full Face

Masks are generally interchangeable, so if one is uncomfortable, you can try a different style without having to replace your entire machine (see visual above).

Still, CPAPs can seem like more trouble than they are worth—they require wearing a mask to bed, are cumbersome to travel with, are often removed by users during sleep, and can cause a dry mouth or runny nose. In fact, a recent study at Cleveland Clinic found that only 44 percent of OSA patients were still using CPAP three years after a diagnosis.

Also, those who have educational and expert support in CPAP use are much more likely to stick with it, according to a study in the American Journal of Respiratory and Critical Care Medicine. So be sure to get fitted and trained before you give up on CPAP altogether.

But most doctors agree that OSA shouldn’t go untreated. The most convincing arguments come down to long-term health and quality of life:

Still can’t get used to CPAP?

• Treating sleep apnea can alleviate symptoms of depression, according to a study in the Journal of Clinical Sleep Medicine. • Untreated OSA is associated with hypertension, cardiovascular disease, stroke, daytime sleepiness, auto accidents and diminished quality of life, found a study published in American Journal of Respiratory and Critical Care Medicine. Multiple studies have shown treating OSA lowers these risks. • Using CPAP improves the sleep (and health) of your bed partner too, found a study published in Chest.

Give CPAP a chance If you’ve never used CPAP, it can seem daunting. But it might not be as bad as you think. While the first commercially available CPAP weighed a bulky 14 pounds, the machines have gotten much smaller, some today weighing only two pounds and measuring the size of a soda can. 26

caringvoice.org • Summer 2016 • Sleep health

• Lifestyle changes—losing weight, avoiding alcohol, smoking and certain sleeping pills—can help people with mild sleep apnea, according to the Mayo Clinic. • Those with mild to moderate sleep apnea may also find success with oral appliances that work by moving the jaw forward during sleep. A dentist or orthodontist can custom fit the mouthpiece once a patient is determined to be a good candidate. • In the last few years, upper-airway stimulators have become a promising new treatment. These devices are surgically implanted directly into certain patients with obstructive sleep apnea and trigger the tongue to move out of the airway. Apnea events decreased by 70 percent in more than 100 patients implanted with the device for a year, found a study published in the New England Journal of Medicine in 2014. • According to the Mayo Clinic, various kinds of surgery to unblock airways may also be considered if other treatment options have failed.

| Healthy eating |

Get out the

grill Make your next cookout a little

healthier with these tips and recipes.

| Healthy eating |

Drink Recipe: Watermelon mint lemonade

Healthy hydration

Blend watermelon with lemon juice and mint until smooth.

öö Sweeten mixed drinks only a hint, or with fruit, if at all.

öö 1 small seedless watermelon, chopped öö juice of 2-4 lemons (or ½ cup of lemon juice) öö 10 mint leaves, broken, chopped or muddled

öö Opt for water as much as possible.

öö Avoid instant powders (heavy in sugar, artificial flavors). öö Unsweetened or fruit juicesweetened tea is better than soda or lemonade.

Salad Choosing a better salad

Recipe: Grilled romaine

öö The greener the better—greener vegetables are more nutrient dense.

Mix oil, salt, pepper and balsamic (if using) in a small bowl. Brush across cut side of romaine heads. Place romaine cut side down on hot, clean grill grate for 20-30 seconds. Brush any remaining oil on opposite side of romaine. Rotate head and grill 15-20 seconds. Remove from grill and sprinkle cut side with cheese or lemon juice. Serve immediately.

öö Swap mayo with vinaigrette to cut down on saturated fats. öö Leave vegetable skins on. They often contain a concentration of nutrients. öö Choose a recipe with a variety of vegetables, not just potatoes and onions. öö Just a little bit of cheese goes a long way.

öö 3 heads of romaine lettuce, sliced in half, lengthwise öö 1 tablespoon olive oil öö salt, pepper to taste öö 1 teaspoon balsamic vinegar (optional) öö ¼ cup parmesan cheese (use lemon juice for healthier option)

caringvoice.org • Summer 2016 • Sleep health

| Healthy eating |

Entrée Grilling fresh öö Incorporate vegetables. öö Opt for fish, white meat or a lean cut of steak, in place of burgers. öö Avoid simple carbs (e.g., whole wheat buns, not white). öö Add spice. Cayenne, cumin, turmeric and black pepper all have health benefits. öö Apply marinade or oils lightly with a brush, rather than submerging to minimize saturated fat intake. öö Be careful with condiments. Many are filled with sugar or fat. Mustard is the best choice. (Or try hummus or mashed avocado instead.)

Recipe: Chicken and veggie kebabs Combine veggies and meat on skewers. Mix oil, lemon juice and spices in a bowl. Brush kebabs generously with marinade. Grill about 5-8 minutes on either side (until center of meat is no longer pink). öö 4 boneless, skinless chicken thighs—cut into 1.5-inch pieces öö 1 onion, 1 bell pepper, 2 ears of corn—chopped into large, even pieces (or any variety of veggies) For marinade: öö 2½ tablespoons olive oil öö 2 tablespoons lemon juice öö ¾ teaspoon cumin öö 1 teaspoon minced garlic öö ¼ teaspoon black pepper öö salt, crushed red pepper to taste

Dessert

Keeping dessert healthy

Recipe: Grilled fruit

öö Look for naturally occurring sugars, rather than added or artificial sweeteners.

Clean grill thoroughly. Drizzle fruit with maple syrup and sprinkle with cinnamon. Place on grill over medium high heat for 1-2 minutes, uncovered, until warm through. Serve as is, or with a scoop of Greek yogurt.

öö Incorporate fruit for a few nutrients. öö Check the contents of frozen desserts. Sorbet usually has less saturated fat and added sugar than ice cream or frozen yogurt. öö Choose frozen fruit bars over artificially flavored popsicles.

öö 1 cup sliced firm fruit such as pineapple, peaches, mango or melon öö 1 tablespoon maple syrup öö cinnamon öö Greek yogurt (optional)

| Legal corner |

Dispelling the myths:

Work and Social Security disability This is part two of a four-part series aimed at helping you understand the U.S. Social Security’s disability assistance.

will deny your application—unless you quit your job or work fewer hours.

If you want to or did try working during the period of time in which you are seeking disability benefits, SSA reams of early retirement may classify this work as an “unsucnever consist of unexpected, cessful work attempt.” It is a way to life-altering diagnoses. Many explain to SSA why you were unable people with disabilities wish to continto maintain sustained work. SSA may ue working for both financial security consider such an employment period and personal fulfillment. Nonetheless, an unsuccessful work attempt only if it health complications can force an early meets certain qualifications—primariretirement, and forever change percep- ly that it was less than six months total tions of work and leisure. and that your condition caused at least The U.S. Social Security Admin- a 30-day break in substantial work priistration’s (SSA) disability program or to it. distributes assistance to more than 14 million beneficiaries with disabling Myth: I cannot apply for SSA conditions that leave them unable to disability while receiving sick work (see an introduction to disability pay or disability insurance.

in Community’s spring issue). But many Working individuals often purchase misconceptions prevail about navigat- private short-term disability insurance ing the process especially in regard to and long-term disability insurance, or employment. Below, we examine some these benefits are available as part of of those common work-related disabil- an employer’s benefits package. You can apply for SSA disability while you ity myths. are receiving either—or while receiving sick pay, leftover vacation pay or Myth: I cannot apply for SSA annual leave—and these payments will disability while working. not count towards the aforementioned SSA actually provides incentives to $1,130 monthly income limit. It takes encourage work. an average of six months to get an iniYou can be considered for SSA dis- tial decision for SSA disability. So, to ability benefits while working, but you be in a more secure financial situation, must gross less than $1,130 per month do not wait for third-party disability (for 2016—the number adjusts each insurance benefits to expire, but file for year according to the wage index). If SSA benefits as soon as you think you you earn more than that, SSA consid- qualify. If approved for disability beners it “substantial gainful activity,” and efits, SSA places no restrictions on you 30

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also collecting short- or long-term disability insurance, although most private or employer disability insurance programs will reduce their payments by the amount SSA pays. One nuance: If you collect Supplemental Security Income—the needbased program which includes enrollment in Medicaid and is meant to help the aged or disabled with little or no other income or resources—SSA will look into any income streams you have, including employer disability insurance, to make sure you qualify as having “limited income” (based on numerous factors such as household size). If you qualify, both benefits can be redeemed—otherwise you may be ineligible for Supplemental Security Income. Myth: I must wait until Medicare or Medicaid (through disability benefits) kicks in to be insured. One of the most critical concerns for people with disabilities is continued health coverage—and continued access to specialists and life-sustaining medications. The two primary options are private health coverage or Consolidated Omnibus Budget Reconciliation Act (COBRA) coverage. COBRA enables you to continue any coverage you had while employed at a higher out-ofpocket cost. Generally, the maximum COBRA coverage period is 18 months, but if SSA finds you disabled within 60 days of electing COBRA (before or

| Legal corner | after), you may be able to extend for an additional 11 months. This gives you time to complete the 24-month waiting period for Medicare should you qualify to receive Social Security Disability Insurance (earned benefit based on taxes paid into Social Security). Myth: I must disclose my disability to my employer. You have the right to choose whether or not to disclose your disability to a current or potential employer. Disclosing allows you to request reasonable accommodations if needed and may help you avoid stigma, discrimination or misinformation. You will want to provide physician certification of your disability and inability to work to your human resources department once you have no option but to resign or reduce your hours and apply for disability benefits. Do not write a resignation letter without this. With physician certification, disability insurers are less likely to view your resignation as quitting, which improves your chances of proper payout. Myth: Once I’ve applied for SSA disability, I have no further obligations.

hours, duties or pay. Failing to report ment, career fairs, résumé editing and these changes can lead to reduced or interview preparation. Participants reterminated benefits, court-ordered receive a paper “ticket” from SSA to take payment, fines and/or imprisonment. to a pre-established Employment NetChanges can be reported by phone, fax, work or state vocational rehab facility. mail or in person to SSA. Similarly, the “trial work period” allows SSA disability recipients to test Myth: I should collect both their ability to work while continuing unemployment and disability to receive monthly benefits. Once you benefits. start receiving benefits, the gross inAlthough receiving unemployment and come threshold changes. For 2016, any disability simultaneously is technically gross earnings above $810 in a month possible, most representatives recomwill instigate a trial work period. For mend people stop collecting unemnine months (consecutive or not) out ployment before applying for disability. of every 60, SSA allows beneficiaries The reasons behind seeking these two to earn any amount above $810. But benefits are contradictory: unemployif work continues above $810 past the ment benefits are granted based on the nine-month mark, then SSA disability assertion that you will work once anbenefits will terminate. other job becomes available; SSA disIf SSA terminates your benefits ability is designed for individuals no longer able to work. Thus, SSA often because of work activity you may be able views collection of unemployment as to request an expedited reinstatement evidence of an ability to work, and so of monthly payments and Medicare or Medicaid. Those seeking reinstatement may deny the claim. must be unable to work because of the same or related medical condition Myth: If I’m receiving disability benefits, it’s nearly impossible for which SSA originally awarded to get back to work. benefits. The reinstatement request If you receive disability, SSA has must be submitted within 60 months devised a number of ways to assist and of termination. You may also receive encourage your return to the workforce. provisional benefits including health The Ticket to Work program is a insurance for up to six months while voluntary, free program that offers ca- your request is under review.

While your application for SSA disability is pending or you are receiving CVC is here to help you redefine benefits, you are obligated by law to reer services such as vocational rehareport certain changes. Among other bilitation or training, while removing your work goals. Contact our Appeals things, you must report if you start or the risk of disability benefit termina- and Disability Team at 888-267-1440 stop work, or experience a change in tion. Typical services include job place- for further assistance. CVC Senior Patient Advocate Lauren Patrizio, Esq. is a graduate of Virginia Tech University in Blacksburg, Va., and Roger Williams University School of Law in Bristol, R.I. She is a member of the Virginia State Bar.

CVC Patient Advocate II Nora Ciancio, Esq. is a graduate of the University of Richmond (Va.), and Penn State Law in State College, Pa. She is a member of the Virginia State Bar.

| Health watch |

Medication safety and travel

hen you have a chronic illness, juggling multiple medications while on the go can feel more complicated than leaving home is worth.

But with a few careful preparatory strategies—including making sure you know your medication lists forward and backward—you can learn to stay organized and lessen the risk of treatment errors, as well as the stress of trying to prevent them while traveling.

Know your medications The Institute of Medicine estimated in 2006 that at least 1.5 million preventable medication errors take place each year in U.S. medical facilities. Many more happen in patients adhering to drug therapies at home. To avoid errors, you must know your medications. Adhering and then complying with your drug regimen gives you a much better chance of staying well. Studies show that patients who have accurate information about their drug regimens are much more likely to follow through than those without. Knowledgeable patients are also better able to evaluate how a new prescription is affecting them.

People with chronic illnesses are often on many medications—some for their condition and some to manage the complications and symptoms of the illness. Each new medication increases the risk for therapy duplication and drug interactions. You can help pharmacists notice and avoid drug interactions by filling all medications at the same pharmacy. If prescribed a new medication, educate yourself about potential side effects. While some side effects such as mild nausea may be temporary and require an adjustment period, others can be dangerous and herald severe consequences. Don’t be afraid to ask your doctor or pharmacist questions. Always keep your medications in their original container. If you use a pillbox, keep no more than a week’s supply inside. This pillbox should be clearly labeled with the days of the week and each day should have a separate slot for each dose needed throughout the day. Don’t keep your medications with those of anyone else in your household. You could easily get them confused.

Keep an up-to-date list of all drugs you are taking (this includes prescriptions, over-the-counter medications, Organized travel vitamins and herbal supplements) and keep this list with you at all times. You should review it at every doctor visit. Adhering to medications while traveling should be much For prescription medications, it is useful to know the brand more successful once you are educated about your own and generic names to avoid possible duplications of therapies, medications. But adding a few travel-specific strategies can especially if there are multiple doctors involved in your care. make things even easier. Along with a list, bringing your actual medications to your Traveling with medication requires careful attention. doctor visits is helpful. Begin strategizing a few months before your trip. Refill your 32

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| Health watch | medications. Pack enough of your medicines to last your entire trip plus a few extra days, in case of any unforeseen event or delay.

on will give you access to them during your flight and they will not be subject to the extreme temperature Will you require an early refill due to your time of departure and length of stay? Your doctor may need to provide changes that can occur in you with a “travel override” in order to fill your medication the luggage storage area of the plane. For the same at the pharmacy. Schedule any necessary appointments. reason, never keep your If you are changing time zones, discuss with your medications in a car. doctor or pharmacist a plan for when you should take If your medications reyour medications. quire refrigeration, use a Use your medication list to help you pack. Pack your travel cooler to keep them medications separately in a clear plastic bag so that they are cold. Make sure the cooleasily accessible and keep them in their original containers. er is insulated enough to When traveling by air, packaging is especially important, keep ice cream from meltbecause of Transportation Security Administration (TSA) ing for several hours. Keep checkpoints. Be sure to separate your medication containers in mind that any freezer from your other belongings before going through the secu- packs inside must be solid rity checkpoint. Although TSA does not require passen- at the checkpoint—othgers to have medications in prescription bottles, some states erwise they will need to have individual laws regarding the labeling of prescription be checked by an X-ray medications. Research laws in your state in advance. The machine. Centers for Disease Control suggests also bringing notes Luggage weight limits from your doctor’s office explaining any “controlled subdo not apply to medications stances and injectable medications” to expedite the security or medical equipment— check process. nor does TSA’s liquid policy. You may bring medically Take your medications necessary liquids, medications and creams in excess of the in your carry-on—losing usual limit of 3.4 ounces or 100 milliliters in your carry-on your luggage could result in bag. However, these liquid medications should all be placed severe health consequences. in a separate bag for easy inspection. Additionally, packing your Knowing your medications is an excellent practice to medications in your carrykeep for your overall health. And, once you know your medications and take a little time to plan in advance, travel should be much easier.

“Knowledgeable patients are

also better able

to evaluate how a new

prescription is

affecting them.”

For more travel information, you can visit tsa.gov or cdc.gov/travel or call TSA with questions at 866-289-9673. To be safe, always talk to your doctor about special considerations you may need to take before deciding to travel. Robert E. Mayfield, M.D., maintained an active family medical practice for 15 years. He now oversees CVC’s Department of Medical Affairs and Compliance, providing strategic medical advice and counsel on new disease funds prior to program implementation.

| Raising awareness |

WALKING WITH A PURPOSE 80-year-old Don Stevenson has walked 4,000 miles, raising funds and awareness for pulmonary hypertension

ast summer, 79-year-old Don Stevenson trekked 3,000 miles from Auburn, Wash., to Silver Spring, Md., to raise awareness for pulmonary hypertension (PH).

“Maybe it’s selfish, but I really feel great knowing I’m helping others,” he said.

Yet he thought he could do more. So few people he met along the way knew anything about PH.

Don has completed 21 long-distance benefit walks since 1998. He started walking to exercise after retiring from the local dairy and full-time pastoring.

Walk across America

So on Jan. 4, his 80th birthday, he set out again hoping to make him“I walked for about a year and decidself—and the plight of a person with ed I’d like to walk across America,” he PH—more visible by pushing a walker said. But he didn’t want the effort to and carrying an oxygen tank. (PH pa- be about him. tients need oxygen or daily medication, He and Loretta were mourning the often simply to breathe well enough to loss of her father to Alzheimer’s disget around.) ease at the time. Over 10 weeks he walked 1,000 “I told her I’d like to do a walk for miles around two counties near his Alzheimer’s and dedicate it to her fahome in Auburn. ther,” Don said. That theme remained Of Don’s more than 50,000 total for the first few walks. lifetime miles walked for various A few subsequent walks spotlighted medical causes, he and his wife Loretta, multiple sclerosis (MS). His brother who drove across the country alongside died at 31 from MS and his sister had him providing support, said the miles for PH were particularly meaningful. it too. He covered 15,000 miles for MS They made new friends, were invited over a few events. He soon expanded to conditions into homes, and most importantly, inspired people to learn about PH. afflicting his congregants and friends. They also raised more than $10,000 He walked 106 miles blindfolded for for the Pulmonary Hypertension a young girl who is blind. He walked 13,000 miles for Huntington’s disease Association in Silver Spring. And though Don says age might at the request of a friend who has have slowed him a bit—now averaging family with the disease. 20-30 miles a day, compared to 30-40 as a “younger man”—it hasn’t lessened his strong sense of purpose. 34

Don and Loretta Stevenson pose with Medal of Honor Recipient Clint Romesha, who walked with Don for a day.

lifetime miles for MS. He thought he would retire after that. But as part of some pastoring of elders he does, he visited a friend, Betty Mayfield, in the hospital with PH. “I told her, I said, ‘Betty, Lord willing, I’m going to walk for PH and dedicate the walk to you,’ ” Don said. “She thought that was great.” So, Don’s plans for another crosscountry trip began. He included two others with PH in his tributes: a woman in his church, and a 14-yearold boy whose double lung and heart transplant Don had walked around the perimeter of Washington to support. The boy had the transplant, and is now doing well. The two women have both passed away.

Loretta

Originally, as the cross-country trip to Shortly before his sister’s MS-relat- PHA headquarters materialized, Don ed death in 2013, Don decided to cover wanted to walk without Loretta along, another 8,000 miles to surpass 20,000 knowing she preferred to stay home.

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| Raising awareness | “He’d told me so many times be- walked. But to them it’s meant a lot fore that he was done walking across that someone thought about them, and America,” she said. recognized the need.” Her typical responsibilities on Don’s walks are quite involved. She drives ahead to the next town and finds hotels to call or visit to see if one might donate the night’s stay to them. They didn’t pay for lodging for 120 nights last year thanks to her, Don said.

She finds food and water—often Kmart or Wal-Mart will donate some. She checks in with Don to keep him fueled and hydrated. She takes care of bills at home. She tracks miles, routes and donations. She does laundry. She even locates the local news stations and pitches the story of Don and his walk.

PHA Executive Vice President Carl Hicks also flew out to walk with Don for a day. He said his feet hurt by the end, so Don shared a trick: Rub PHA also had a hand in making it Vaseline on your feet, and only use special. They recruited Clint Romesha, cotton socks. a Medal of Honor recipient, to walk When Hicks greeted Don at PHA’s for a day in Minot, N.D. He hadn’t celebration for his finished walk, he heard of PH before, and he told Don presented Don with a gift. he was honored to take part. “It was a big box of Vaseline,” StevenDon Stevenson son said. He shared some with Hicks. needed surgery for carpel tunnel after pushing a walker 1,000 miles for PH.

She thought about it, then wrote him a letter. “I gave him all these reasons why I did not want to go,” she said. “And then right at the bottom I said, ‘But because I love you so much, I’ll go with you. And I’ll try my best to do whatever I can for you.’” She’s glad she did. “It was one of the most wonderful walks we were on. There were just so many wonderful people we met,” she said. Don agreed. “I had a lot of people come up and really appreciate what I’ve done,” he said. “I haven’t really done much, just

Don says all his walking gave him a better picture of America than the one most people have, and more faith in its people. Though he never asked for money, he carried fliers—Loretta often finds printing companies to donate these— explaining his effort and including information for donating to PHA.

“It kept me busy, really busy,” she said. “Most of the time the day was gone before I knew it.” But Don eventually knew he needed Loretta to come to Maryland. He couldn’t do it without her. And, he told her, “We’re going to be separated for at least four months. We have never been separated for that long.”

A better picture

He says people are generous. He had someone write a $1,000 check on the spot. A waiter at Applebee’s literally emptied his pockets. He’s never met a person he didn’t like.

Don said he told him: “No Clint, “I just haven’t seen all this bad news you got it backwards. You’ve sacrificed we see at 6 o’clock,” he said. “The TV your life for us and we thank you for that, and I really feel honored walking really sensationalizes a lot of things. They don’t see there’s a lot of people with you.” out there who really are doing good Don was also moved by a visit from things. And I’ve met several of them a pulmonary specialist, Dr. Patricia as I’ve walked.” George, and one of her patients. They Perhaps that’s why he can’t quite drove from Pennsylvania to walk a few stop walking long enough to write the miles with Don while he was in West book he has planned. Virginia. Another woman who had just “I’ve got [a new walk] in my mind, been diagnosed with PH drove 100 but I’m not going to tell anybody about miles in Minnesota just to thank him. it until I know it’s going to work,” “Those kind of things really please me, because I know the walk isn’t in vain,” he said. “I know it’s doing somebody some good.”

Don said.

In the meantime, you can still donate to PHA in Don’s name at O2breathe.org/FightPH16. 35

| Lifestyle |

What meditation can do for you A practical guide to understanding and practicing meditation for greater wellbeing

eople have interpreted meditation in many ways throughout its long history. Now, so many different varieties of and approaches to meditation exist that it can seem pretentious, intimidating or so otherworldly it becomes impractical.

are doing the opposite—focusing on outside stresses. But when your body’s energies don’t have to go outward, they can be used to do repairs, digest food and recharge for what is to come. Focused on this repair and recharge, your body is in its optimal state.

In reality, meditation can be both approachable and practical. I think of it as a tool for striving to build a healthier lifestyle from the inside out.

This allows for a calmer, healthier In the seated practice, you will let go internal environment that brings forth of the outside world and focus inward positive, more peaceful and loving on your breath. Thoughts will come emotional reactions. Suffering might and go—perhaps erratically for awhile be reduced. Research shows medita- until you learn to hold that singletion can boost your immune system, pointed focus of your breath, letting increase your focus, give you more pa- go of everything else. This will anchor tience and make you feel better overall. your thoughts to your body’s rhythms.

As with anything that takes practice, you may not see results right away. But if you are like me, the science behind meditation will motivate you to stay with the practice; once I felt the benefits, they drove me to continue. Your mind controls how your body responds—from lifting your arm to raising your voice. Whether it is an aggravating person or a debilitating disease, unexpected outside forces can impact us at any given time. Your breath can give you control over how you react to these forces, and allow you to better manage their impact. As you calm the respiratory system through controlled breathing, your heart rate decreases, changing the chemical reactions within you. This can trigger a relaxation response in your nervous system, sometimes called “rest and digest,” that tells your body to focus on itself. Often our bodies 36

be available to you in experiencing the full range of emotions: happy, sad, angry, lonely, pain, etc. That focused peace will become a place that you can call to mind, not only while seated in your meditation, but as you go about your day or transition to sleep at night.

What begins as voluntary, deliberate Some days are harder than others, sitting, breathing and thinking, with and it is on such days your meditation practice can become a natural way of practice will be needed even more to being. Studies show the brains of long- help your body stay as healthy as possiterm meditators physically change in ble. The better you get at taking care of areas related to stress, focus and calm. yourself in this way, the better you will The practice of meditation can be feel. Taking this kind of control can be simple. I believe it best to start with empowering in times that would otha seated meditation that allows you to erwise leave you feeling powerless.

focus. That is a big part of meditation— In meditation, possibility exists for learning to focus on a single point, transforming the way you experience which will eventually give way to a new, life’s routines, challenges and joys. calm awareness in your daily routine. Take a look at my daily practice guide The focused peace that you gain will on the next page to get started.

caringvoice.org • Summer 2016 • Sleep health

Jessica Scalin, of Richmond, Va., is a lifestyle and meditation coach with a pre-medical degree. Lululemon named her one of the top yoga instructors on the East Coast.

| Lifestyle |

Daily meditation practice guide When you use the following practice daily, your biochemistry will learn to be in equilibrium, and in this peaceful state, you can begin experiencing the many benefits of meditation.

Duration

Start with five minutes the first week. Everyone has five minutes. Add more time to the practice gradually.

Location

Pick a spot where you will not be bothered and you can practice rain or shine. Add it into your routine—in the car before work, in the bathroom, while your breakfast cooks, etc.

Attitude

Let go of perfection. There is no perfect way. Most people have lost their ability to focus and relax. That is

why it is so hard at first. Just because you aren’t moving doesn’t mean you are doing nothing. This skill goes deeper than external checklists; it changes your biochemistry for a healthier you.

Practice

Sit and breathe without external distraction for five minutes. ÎÎ Sit in a chair with your feet flat on the floor, your spine straight and shoulders down and back (good posture), hands relaxed, face relaxed.

ÎÎ You can close your eyes or keep them open—try both and use whichever gives you greater focus. ÎÎ Breathe in through your nose a slow, deep breath. Pause with full lungs. ÎÎ Exhale a long, slow breath out of your mouth. ÎÎ Repeat until you feel calmer. ÎÎ Then switch to a relaxed and natural breath in and out of your nose.

Routine Repeat every day. Take note of how you feel and respond to stressors so you can observe changes as your practice progresses.

Get support. Meet new friends. Share your stories.

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| Final thoughts |

When your health isn’t always predictable, an emergency situation—anything from simply losing power to homedamaging floods or tornadoes—risks turning into a medical disaster. As hurricane and flood season heats up, here are some things you can do so that if the unexpected happens, you’re a little more prepared.

Make a general plan for big emergencies Think through steps you may need to take. ▪▪ Who will you contact?

▪▪ Where will you meet your family?

▪▪ Where can you go if you need to leave your home? Your town? ▪▪ What will you bring with you?

▪▪ Where can you find travel and weather information? Write the plan down, distribute it to your family and run through it once to practice.

Make a medical plan for emergencies

If you have special medical concerns, how might they be impacted by an emergency? Things you might consider: ▪▪ Who to contact for emergency electricity needs.

▪▪ Printing medical information on a small card to carry with you at all times. ▪▪ What supplies you should have on hand in case you don’t have power or can’t get to a store for a few days.

Write down or print out pertinent medical and contact info, and hang it on the refrigerator. Put numbers you may need in your cell phone.

Prepare others in advance

▪▪ Share your condition and specific needs you may have in times of emergency with your local EMTs and fire department. ▪▪ Call your electric company to see what services they offer for customers with medically based power needs.

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Make an emergency kit Include things such as:

▪▪ A few days’ worth of all medications. ▪▪ A list of all medications you take.

▪▪ A list of instructions specific to your care.

▪▪ A copy of important health records, such as an EKG.

▪▪ Contact info for specialty pharmacists, caregivers, your medical team, etc.

For more detailed considerations, seek online resources:

▪▪ Ready.gov offers disaster readiness tips, sample plans, informational sites, forms to print, apps to download and more from the Department of Homeland Security. ▪▪ The Pulmonary Hypertension Association has many resources on their website, phassociation.org, for emergency preparedness specific to those with medical considerations, including printable forms and checklists.

▪▪ The Huntington’s Disease Society of America provides important resources on their website, hdsa.org, for encounters between people with Huntington’s disease and law enforcement. ▪▪ The Epilepsy Foundation offers a “toolbox” on epilepsy.com with downloads for making an emergency seizure plan among other helpful resources.

▪▪ Check other patient organizations for info related to your or a loved one’s condition.

Help support CVCâ&#x20AC;&#x2122;s Community 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. Donate or subscribe by using the enclosed envelope or visit us online at caringvoice.org.

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

How We Help 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.

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