In Your Words - Community Magazine - Winter 2016 by Caring Voice Coalition

COMMUNITY Volume 5 • Issue 4 • Winter 2016 The Quarterly Publication of Caring Voice Coalition, Inc.

In Your Words A special annual issue voiced by you—patients and caregivers living with chronic illness.

Consider CVC in your holiday giving. Your gift helps us improve the lives of people with chronic illnesses.

Click here to see how you can help!

| Contents |

Featured this issue:

From the community

12 | Lynn Adams

4 Letters

After being homebound from orthostatic hypertension for 20 years, Lynn Adams recently found renewed energy from aquatic therapy.

15 | Sharon Castellano Torledsky Sharon Torledsky raised two children and grew an impressive career until her narcolepsy caught up with her. She is learning to restructure her life.

18 | Michael Guerra Michael Guerra’s seizures began at age 11, but he was only diagnosed with complex partial seizures in his 50s.

Publishers Pamela Harris pharris@caringvoice.org

From the president and editor.

Samantha Green sgreen@caringvoice.org

7 Close up: Nellie Capehart

Publishing Editor

A CVC case manager introduces herself.

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

10 At a glance: Factor XIII

Learn a few basics about this rare genetic bleeding disorder.

Health 28 Q&A: Holiday health strategies

Sonya Angelone, Academy of Nutrition

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

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

and Dietetics spokesperson, offers helpful strategies for prioritizing your health during

20 | Lisa Skeeters The power of a strong support system gives Lisa Skeeters the strength she needs to live beyond pulmonary hypertension.

24 | J. Daniel Miller A rarity among an already rare diagnosis, Daniel Miller was born with the gene mutation that causes Huntington’s, despite no family history of the disease.

26 | Jodi Frunzi Jodi talks about life with her 16-year-old son, Michael Frunzi, who has Phelan-McDermid syndrome.

the holidays. 30 Healthy eating

Better recipes for your holiday baking. 34 Legal corner

What to expect after a Social Security disability approval. 36 Health watch

A checklist for your next appointment. 38 Final thoughts

Advertising disclaimer Any references to products, services or health care providers in this magazine are not a recommendation or endorsement of products, services or providers.

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

Quotes to inspire you in your journey with chronic illness.

| From the community |

Hard-earned wisdom

n each issue of Community, we do our best to gather stories, health advice, relevant research and encouragement that will be a support for people living with chronic illness and those who love and care for them.

But despite our best efforts, the support you show and strength you model for each other accomplishes something we can’t. You, speaking from your own experience, can offer first-hand, hard-earned wisdom or give voice to relatable experiences that spark empathy and hope. So, for the final Community of 2016, we’ve gladly handed the reins to you once again for our special, annual issue featuring your stories.

On the following pages you’ll find personal stories from people impacted by narcolepsy, pulmonary hypertension, Phelan-McDermid syndrome, orthostatic hypotension, complex partial seizures and Huntington’s disease. These are moving accounts from various stages of chronic illness journeys. Sharon Castellano Torledsky is grappling with what her next moves will be after narcolepsy made her career impossible, while appreciating the power that comes from better knowledge of her illness. Lisa Skeeters, born with a heart condition that led to pulmonary hypertension, has built a vibrant life centered around her faith, family and best friends. And while Michael Guerra has lived with seizures for decades, he only recently found a sure diagnosis and effective treatment, and he looks forward to how that might open new doors for him. Alongside stories like those, this year we added something new to the mix. We asked you to share your own tips for living a fuller life with chronic illness. You’ll find the answers we collected on pages 8 and 9. We are inspired by your desire to help one another and are honored to provide a place where you can do so. Enjoy each other’s wisdom—and also don’t miss the appointment checklist, a nutritionist’s advice for the holidays, and quotes to inspire you, wherever you are in your journey.

Kelli L. Yoder, Publishing Editor

caringvoice.org • Winter 2016 • In Your Words

| From the community |

Anchored by you

aring Voice Coalition exists for you—our patients. Considering how best to serve you is central to every decision we make here at CVC.

Still, when we take care of the day-to-day details of this work—managing technology, finance and communications that ensure as many people as possible receive assistance with costly healthcare needs—it is easy to forget that there are hopes, challenges, dreams, distractions, and unique twists and turns that make up each of your individual stories. That’s why this annual Community filled with and anchored by your stories is so important. Your stories remind us why we do what we do. Reading them, we briefly walk in your shoes. We see just how vulnerable—and resilient—all of us are as humans. We recognize that your struggles and hopes and dreams are not so different from our own, and that each person deserves the fullest life they can live. In these pages, we get to know the people we work to serve each day a little bit better. We know there is incredible work to be done, and we are encouraged to keep going.

We also witness how your stories are particularly meaningful when shared with each other. We’ve seen and heard how comforting and hopeful it is to recognize that your experience is not a solitary one. Someone might share a strategy for living with a certain diagnosis that is new to you. Another person might describe a feeling you have often that few others can relate to. We hope that hearing the words of someone else going through what you are leaves you encouraged and with a new perspective. This year’s stories begin on page 11—so start reading. We are so grateful for those willing to share these pieces of themselves. We hope hearing these stories helps each of us remember that all patients are people first. There is beauty in our commonality—and our individuality.

Pamela Harris, President, Caring Voice Coalition

| From the community |

Community conversations A few times a month we release new articles on the Community blog to provide advice for living with chronic illness. Here are some from the fall.

6 ways to manage pain today

How to create your own support system

8 free apps to manage anxiety and depression

Disability Check out CVC’s Appeals and Disability team’s latest blog posts on navigating the Social Security disability process.

What does your date last insured mean?

5-step disability approval process

Social security’s new Huntington’s disease listing

Trending Here’s what has been popular on social media this month.

 Get to know PHA’s President and CEO Brad A. Wong

Missed the last issue?

caringvoice.org • Winter 2016 • In Your Words

 Staying covered: Open enrollment

 Patient stories

| From the community |

Nellie Capehart

Case Manager

have been married for close to six years, to a loving and supportive husband and we have two bright and beautiful little girls under the age of 4 who ensure there’s never a dull moment in our home.

I have an associate’s degree in science and have always been fascinated with human health, thus have pursued careers in the health industry. I learned about Caring Voice Coalition (CVC) in 2009 through a former manager. She called me multiple times over three months, telling me to come work for CVC. Her persistence paid off. After doing some research and seeing that CVC had been assisting patients with chronic diseases since 2003, I decided to make the move. I’ve been working here now for over seven years. I currently work as a case manager to help provide financial assistance to patients. My day-to-day work consists of making sure proper documentation is present in each patient account. Whether it be reaching out to a doctor’s office, seeing to it that proper grants are provided or making patients aware of what to expect within the grant process, CVC trains us to do our best to give each patient the best customer service experience possible. Having a bilingual background also allows me to assist our Spanish community in understanding how we are able to provide them with much needed financial assistance related to our supported diseases. I have the pleasure of working with some amazing individuals within CVC. Everyone comes to work with a smile on their face ready to serve and make a difference in people’s lives. This truly has been a rewarding career, knowing that in a small way I’m able to serve communities

in need. The icing on the cake is speaking with patients and at times hearing a bit about their story. The passion that some of our patients have shared with me has been inspiring. Hearing their stories of struggle and victory allows me to see that courage comes in all different shapes and sizes. Over the years I’ve seen the power of attitude. I’ve noticed that a positive attitude, having a sense of humor and rolling with the punches can truly make an impact on your health. Among many beautiful moments that I’ve experienced serving our patients, I have one that stands out. In conversations with a patient who was prescribed multiple pulmonary hypertension (PH) medications, she mentioned her love of swimming. But the machine required to infuse one medication was not waterproof and prevented her from swimming. I could hear in her tone that she was not ready to give up on her passion. With a positive attitude and willingness to advocate for herself, she maintained an open dialogue with her physician. A few months passed and then I got a call. She said that thanks to advancements in PH medications coupled with the hard work she put into keeping a healthy diet and exercise routine, she no longer needs to be on the infused medication and has been prescribed a new oral medication. Her persistence and positive mental attitude paid off and she is able to swim again. To our patients I’d like to say: Keep on fighting. You never know how your story will impact a person. Someone is always listening and everyone has the power to influence those around them. Choose to be a positive role model— you just might fill a person with purpose, equip them with courage or change their life. Your story matters! 7

| From the community |

#CVCTipsandTricks: Your advice for living with chronic illness.

Rest when your body tells you to.

Whenever I go out of town with friends, everyone gets a med list and knows where my ICE (in case of emergency) numbers are!

Things may take you longer and that is OK. Break things into steps. Cooking for instance. Get pots, pans, supplies ready. Rest some. Then cook. Get others, even kids, to help serve. Dishes don’t have to be done right after eating. They can even wait until morning!

@GirlOxygen

Donna Wooley Karl

When I have energy I pre-make foods that freeze well and portion them out for healthy choices when I’m too tired. I also keep baby wipes on hand when I’m too short of breath for a shower. Lots of things have become second nature so I don’t think about it.

To reserve energy, or if I have lack thereof, my goal is: prior, proper planning on everything I do. I always have a game plan. For example, if I have to go grocery shopping, I first make a list and make sure that I only have to go down an aisle one time and try not to back track.

I’m a fan of “cook once, eat twice” (or more!). Say you make a pot of rice. On one night you can have it as your traditional grain side dish. The next night you add some low-sodium soy sauce and a ton of veggies and have stir-fry. Always make more than you need for dinner.

Lisa Mullen

Jennifer Frey Jopp

Colleen Brunetti

Ed Rayford

When I’m trying to save myself some time with housekeeping, I’ll wash and dry the sheets and put them back on the bed . . . no need to fold and put them in the linen closet.

Matty Meltzer Heenan

Pace yourself.

Jo Ann Whitfield

caringvoice.org • Winter 2016 • In Your Words

| From the community |

I was diagnosed with pulmonary hypertension five months ago, but had been really struggling to breathe for a year prior to diagnosis. Dizziness when walking became a real problem. I do not look sick, and I was doing my very best to keep my illness hidden. I found myself avoiding situations where I would be required to walk around people for any distance. I was ashamed to be ill.

 

I avoided getting disabled license plates as that felt like “giving in” to my illness. Because of this, I was so tired by the time I walked into a store that I didn’t have the energy to actually shop, or I was so exhausted getting to my office that I had to rest awhile before I could start working. Someone gave me a valuable piece of advice that changed my mind about this. She said, “Why waste what little energy you have on a parking lot? What is the value in that?” I realized she was right. Why was I fighting something that was only going to improve my health and my ability to function? I received my license plate the next day, and it has been an extremely valuable tool in being able to live more fully.

The spring Community will focus on caregiving. Tell us about your own caregiver—or share with us caregiving tips and stories to be considered for inclusion in the issue by emailing magazine@caringvoice.org. You can also share ideas for publishing by posting publicly on social media using #CVCcaregiving.

These tips were shared with or in response to the #CVCTipsandTricks hashtag on social media.

I am 56 years old, and I was also embarrassed to use a cane. I didn’t think I was old enough. I didn’t want people to look at me and think that I was old. It’s funny because I’m not one who hides my age at all, but I had a hard time getting comfortable with this. When my dizziness got to the point that I was clutching at walls or other people for balance, I finally accepted reality. Now when I have to walk very far at all, I have a cane with me. It makes a big difference in my stability and confidence. My life got smaller and smaller as I avoided social situations because I was so reluctant and embarrassed to use physical aids. I let my pride get in the way of my health. I finally realized that it doesn’t matter what strangers think when they see me in a disabled parking spot or with a cane, and those things will not matter to the people that love me. Chronic illness can be isolating and lonely. Do not let pride take away anything else from you. Make use of the items that will help you make the best of your life’s circumstances.

ÓÓTeri Adams

Factor XIII

At a glance • • • • • • • The body makes 13 blood-clotting factors and if any are deficient, blood doesn’t clot properly and a bleeding disorder results. The Factor XIII protein stabilizes blood clot formation—without the protein, clots form, but then break down. Factor XIII (fibrin stabilizing factor) deficiency is the rarest bleeding disorder, impacting one in every 5 million births.

Inheritance

Symptoms

Factor XIII is typically caused by mutations on the F13A1 gene, but can also result from F13B gene mutations.

People with Factor XIII experience internal bleeding, bruising, nose and mouth bleeds, muscle bleeds and delayed bleeding after surgery. Almost 80 percent of babies with Factor XIII bleed from the umbilical cord at birth (higher than any other bleeding disorder).

Both parents must pass on the defective gene for children to develop Factor XIII.

Diagnosis

Treatment

After analyzing family history and symptoms, and eliminating other bleeding disorders, Factor XIII is diagnosed by quantifying Factor XIII activity with assays (blood content tests) and a clot solubility test.

Small infusions of blood plasma and/or Factor XIII concentrate every three or four weeks as a preventative treatment helps promote proper blood clotting.

Source: hemophilia.org 10

caringvoice.org • Winter 2016 • In Your Words

In your words 12 | Lynn Adams Homebound from orthostatic hypertension for 20 years, Lynn Adams found new hope in pool therapy.

15 | Sharon Castellano Torledsky Sharon Torledsky raised two children and grew an impressive career—but narcolepsy restructured her life.

18 | Michael Guerra After decades of complex partial seizures, Michael Guerra found a treatment that works.

20 | Lisa Skeeters A support system, including her husband Brad, helps give Lisa Skeeters the strength to live beyond pulmonary hypertension.

24 | J. Daniel Miller Daniel Miller’s Huntington’s disease diagnosis came as a shock to his whole family.

26 | Jodi Frunzi Jodi reflects on life with her 16-year-old son, Michael Frunzi, a social butterfly who has Phelan-McDermid syndrome. 11

Lynn Adams found a reason to hope after 22 years homebound with orthostatic hypotension

am 55 years old and for 22 years I have had orthostatic hypotension (OH) in addition to numerous other rare conditions. I have been homebound for those 22 years. When I stand or sit up, I pass out or I have symptoms like dizziness, lightheadedness, nausea, tremors and headaches.

OH is the main symptom of dysautonomia. The “dys” in dysautonomia means “bad” or “broken.” “Autonomia” means the autonomic nervous system. Your autonomic nervous system controls all of your involuntary bodily functions like heart rate and blood pressure, the widening or narrowing of blood vessels, stomach, thyroid and bladder function and more. None of these functions work properly on me. I was diagnosed with dysautonomia and orthostatic intolerance (OI, a subcategory of dysautonomia) in 1989. While homebound, I have not been idle. I got online in search of support in 1997, in the Internet’s early days. There was not one online support group for dysautonomia. Desperate to find someone like me, I built likely the first-ever online dysautonomia support group, that I still run today. I was in a study that resulted in getting the first OH drug FDA approved. There were plenty of drugs to lower high blood pressure, but only one to raise it. I have been a voice for those with dysautonomia for two decades. I wrote God Needs Me, the first book written by and about someone with OI. We face challenges going to the bathroom, bathing, sitting, brushing our hair or even trying to see a doctor. I wrote the book lying down in bed on my laptop. In it, I share how people with rare illness aren’t accepted. We lose family and friends. We face life without a cure. Our conditions have little public awareness. Few doctors specialize in them. Without Caring Voice Coalition (CVC) I would not be able to receive treatment that I need to sit up long enough to do everyday things like eat at the table. It blesses me beyond measure that CVC cares to help me and others with OH. I pray nightly that all those with OH will get the help they need. 12

caringvoice.org • Winter 2016 • In Your Words

| In your words | My condition causes exercise intolerance. When I move too much or exercise, my blood pressure drops and I pass out. So after 22 years I am not only weak, but I have felt locked up in my own house. I truly feel robbed of my best years, from 32 to 54. I couldn’t go to any of my children’s school or church activities. I can never get those times back—but I can look forward and pray that it will be different with my sweet, 21-month-old, precious granddaughter, Sophia.

first several months I had to crawl to the pool, then once I was in it I felt good and free. But when I got out of the pool I was sicker—unable to do much at all. But even if I feel better only while in the pool, it is very, very worth it. To get any relief, however briefly, is remarkable to me.

I realized I was trying to repeat exercises people do on land. I searched instead for water aerobics videos. I bought some weights and an exercise band. I started to feel like A doctor who has studied blood pressure and the auto- I was really getting cardio exercise. I could feel my heart nomic nervous system for many years began advising me pumping and my muscles stinging. It has been hard work— years ago and helped with my book. Last year, he suggested but rewarding. I am up for the challenge because I know that if I could get into chest-deep water, the water’s gravity that with Jesus, I can do anything. would keep my blood flow up and I might be able (Left) Lynn Adams with her to stand without symptoms. Then eventually, granddaughter Sophia and a good time in the water would strengthen my heart, friend. (Below) Lynn autographs stomach, muscles, etc., helping me feel better. her book, God Needs Me, for a fan. For the first time in years, I had hope that my circumstances could improve. The therapy pool cost $13,000—more than I had. Precious friends and family got together and raised some money, but not enough. I prayed and told God if it was his will that I get better in this pool to send it. If not, don’t. Then the Auburn (Ala.) University swim team and alumni raised $1,500 because a coach and his wife heard my story. Another coach got involved and a pool manufacturer agreed to give me the pool I needed for only $3,000. What a mighty miracle! This pool is saving my life. The first day I got in, I felt weird. There I was, standing. It dawned on me that I wasn’t faint, dizzy or sick. I forgot how it felt to feel good. It was like 15 bricks off of my shoulders. I felt free. For the first time in decades I could stand, walk, turn and dance to music. I wept with thanksgiving, and I named the pool Healing Waters. I will never forget what a glorious day it was to hold Sophia in the pool, swinging her around for the first time. I haven’t been able to attend her birthday parties or go to her home. It is my prayer that after getting stronger in the pool I will do these things. It was the first time Sophia has seen her grandmother active and standing. It has been eight months of ups and downs with a lot of obstacles since I got my therapy pool. I knew this Healing Waters journey was going to be hard, and it has been. Take a body that has been unable to do any physical activity at all for 22 long years and then teach it to do exercises. For the

After weeks of 30 minutes of cardio exercises a day, I noticed that for the first time in 27 years, my blood pressure and heart rate were normal. What a glorious four weeks of normal blood pressure I had. Then it went too high for several days. I was down about it at first, but today I have been off of my heart and blood pressure medicine for weeks and I have had a normal blood pressure and heart rate. My advice for others is: Do not give up. It’s OK to hope in doctors, but sometimes we put all our hope in them. Doctors would not advise me on pool therapy and OH because research is lacking. And while I am not cured yet, I am doing better than I ever dreamed I would be. I will continue to swim for my health, but also to give hope to thousands of other sufferers whom I love and support. 13

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.

| In your words |

Finding a new normal Sharon Castellano Torledsky shares her decades-long journey coming to terms with narcolepsy

ost of my long-term friends and family still think of me the way I was before narcolepsy. I had so much energy and didn’t require a lot of sleep. I would go, go, go. I was like a hurricane.

I have dyslexia, but graduated from Florida State University in Tallahassee and was offered one of the top internships. I had a great job. I got married and had twins, a boy and a girl who are 23 now and attend Florida State. I was able to do it all—raise children and have a career.

So I left and went back to ignoring my symptoms. I was in my late 40s and doing property management, which I loved doing. In 2006 our young marketing assistant approached me cautiously and said, “Sharon, I think you say some things that sound like you should go get a sleep study.” My partner, John, who I met in 2007, could also tell my sleep was not normal and encouraged me to go to the doctor. So I scheduled a sleep study. But I didn’t try to understand why I was having a sleep study done. I believed it was a waste of my time.

But in 1996, when my children were 3 years old, I got pneumonia and something strange happened. I was John wanted to come along for the follow-up appointment. so tired, and though I’d always been quick to fall asleep, The doctor read the report and said, “Well, you definitely now I couldn’t. I’d go to the couch, and then I would feel have narcolepsy and fibromyalgia.” I literally couldn’t hear paralyzed—conscious, but I couldn’t wake up. I would hear anything after that. I was so glad John was there. someone break into the house, but I couldn’t talk or move. I started on a medication and people at work could tell It was so scary. My whole body was shaking. In reality, no that there was something different about me. I still wasn’t one was there, and I know now this is called sleep paralysis. slowing down enough to digest anything the doctor had But when I went to the doctor, I was told that I was said. But I had more energy. I was focused. I felt better. I allergic to shrimp, and that was the reason I had these was bringing in close to $4 million in leases. I was at the top strange feelings. It kept getting worse. And now I was of my career. And I was raising twins by myself. terrified of eating in restaurants for fear that I would eat But by the time they graduated in 2011, I was so shellfish. I dreaded trying to sleep. exhausted. My body was slowing down. I could barely walk,

For about two decades these things went on. Doctors couldn’t figure it out. It impacted my relationships—I got divorced. And it started to impact my work. In 2004, I moved to Tampa with my twins. I made a routine appointment with a pulmonologist to get my shrimp allergy medicine. But hearing my symptoms, the doctor wanted me to get a sleep study. I got angry because it seemed irrelevant—I had an allergy—and like a waste of time when I was so busy with my job and kids.

and my job required a lot of walking around properties. One or two days a week I just couldn’t get out of bed, but it was a huge, huge company and I was able to keep the numbers coming in. Yet my memory was very noticeably bad, and it started getting worse. My coworkers knew something was up. In 2013, our human resources department got involved and they said, “Sharon, we want you to take a 12-week leave of absence to take care of your health.”

| In your words | I felt so alone. They didn’t know I had narcolepsy. I wasn’t accepting it, I think. I also—and this is huge—I had never met another person that had narcolepsy. The only thing I had known about narcolepsy was a shared joke at work about someone who fell asleep a lot. My process of awareness and acceptance just moved really slowly.

I didn’t properly understand my narcolepsy diagnosis until I went to a support group in Atlanta, which has been just incredible. My family didn’t understand because I didn’t understand. Finally, over the last year I have had the information to properly educate them. Some of my family and friends understand and welcome the information I give them. Some do not understand, or even want to understand. I have enough support and understanding around me that if someone doesn’t want to know about it, that’s fine.

“My everyday feeling is like I haven’t slept for three days.”

After the medical leave, doctors were saying, “You need more time.” But I still didn’t have a full understanding of what I was dealing with. In fact, I was such a bad patient that my doctor kicked me out of his office. I went back to my primary doctor, forgetting I had been there in 2004 and refused his recommended sleep study. So in 2014, he did the sleep study, and I was diagnosed with narcolepsy a second time. The doctor told me I needed to have my kids tested because narcolepsy can have a genetic link. At that point I was willing to do what he said.

But around then John was offered a job in Atlanta and we moved. Great information has happened to me since I’ve lived in Atlanta, including that I was able to have genetic testing done. I do not carry the genetic marker for narcolepsy.

I also found myself going down the road of filing for disability, even though I didn’t want to. With narcolepsy, you look OK—and people wonder how you can be on disability. Some told me I should not be. It has been hurtful, but everything that happens teaches me more. Every stage of this has been a learning experience. I’ve learned to listen to doctors. I’ve learned to advocate for and educate myself. I’ve learned that I have to take care of myself and stick to a very routine schedule or I won’t be able to function. I have learned the spoon theory, which uses spoons to represent the finite amount of energy that people with chronic illness have daily. (Read about spoon theory here.) It is the coolest thing to grab a bunch of teaspoons and show someone: These are my spoons. They always say they love it. Narcolepsy has also taught me that there are good relationships and bad relationships. And that’s true with your family, friends and—the one that really threw me for a loop—doctors.

Sharon Castellano Torledsky with her partner, John, in 2015.

caringvoice.org • Winter 2016 • In Your Words

Everyone has experienced a night where they don’t sleep well and the next day is miserable. My everyday feeling is like I haven’t slept for three days. But that’s not something you can really see. I may look OK, thanks to great under-eye cover up that I wear

| In your words | every day. But narcolepsy is one of the very many invisible conditions. People often don’t know that narcolepsy is a chronic, lifelong, disrupting, neurological disorder. The brain is not able to regulate your sleep-wake cycle normally. So I want people to know those things. People ask me, “Are you feeling better?” That’s not what narcolepsy is. It’s really best to say, “How are you doing today?”

Sharon is on a quest to find new, narcolepsy-friendly work options. Below, she and John are on a hike with her children.

One great tool in helping someone understand, along with grabbing a set of spoons, is writing the word “chess” to explain the possible symptoms of narcolepsy—which everyone experiences differently: “C” is for cataplexy. “H” is for hallucination, or very vivid dreams. “E” is for excessive daytime sleepiness. “S” is for sleep paralysis. The other “S” is sleep disruption. I have everything but the cataplexy. I’m one of the older people in my narcolepsy support group. I see all these young people in their early 20s. I’m seeing a lot people whose children have it. I think they’re being diagnosed earlier—which I believe means they can have an exciting, full life. My advice for them is to embrace the accommodations schools offer. Don’t be embarrassed to say what you need. And when you start working, you don’t have to tell employers that you’ve got narcolepsy, but know what accommodations you are entitled to should you need them. Even in picking a career, think about something that you can sustain long term.

I’ve been on disability for a year and it’s hard. I want to work. But I realized that getting up and going to work 40 or even 20 hours a week is not really possible. I don’t know Whatever type of narcolepsy you have, a set schedule is what’s next. I had a wise doctor tell me that the loss of work essential. Even so, you’ll have bad days. As soon as I think, and the loss of a loved one is the same type of grieving and “Oh, I’ve got this—I’ve been doing this for a long time,” I’m here to tell you, I absolutely grieve my career. I have that’s just when something new hits or symptoms worsen my faith, and look forward to whatever the next journey is and I have to go back to the basics—narcolepsy 101. I focus because I know it will be great. One day the fog will lift and on my schedule and cut out extra activities. I’m careful with we’ll know why things happened the way they did. I really my medication, and I hope and pray that I can wake up and believe that. get out of bed. I learn from my mistakes. I am so blessed to be in a loving relationship with someResearchers are studying narcolepsy and making progress. The information about narcolepsy was so limited when I one who understands. John has been here through this first experienced symptoms. I’m only now fully appreciating whole journey. I’m just so fortunate to have him and my what narcolepsy is and I’m 56. (Two years ago I took a blood twins. And I am forever grateful to Caring Voice Coalition. test that showed I do not have a shrimp allergy. I am finally I am completely blown away with the whole organization. I’m so grateful—there are not enough words to express it. eating seafood again.) 17

| In your words |

Help from a diagnosis A doctor finally diagnosed Michael Guerra with complex partial seizures in his 50s, after he’d had seizures since age 11. As a result, he found a treatment that works.

hen I was 11 years old, living with my family in Florida, I was sitting in the car and suddenly my vision was fading. Being a kid, I first thought it was funny. Then half my tongue got numb. Next thing I knew, I was in the hospital with this massive pain inside my head. I had passed out after having a seizure. I have had them ever since. Through my mom, who worked as a respiratory therapist supervisor until she retired a few years ago, I had access to decent care. They did a lot of testing—but didn’t have the tools to get me the right diagnosis at that point. They diagnosed me with migraines. From age 11 on I always went to the local hospital after seizures and they treated me for the pain. They knew me well there.

months with the karaoke equipment. I had a friend of mine running it for me then. I would sit inside and watch. Around that time, I met a woman from Michigan and we got along pretty well and got married. We had our first child in 1993. I started driving semis for a while. I could feel seizures coming on, so I would pull over and sit there for about half an hour. It was scary, actually. I was all alone and we didn’t have cell phones back then. Sometimes I would have a panic attack afterwards. I couldn’t tell the company I was working for because I risked losing my job. Eventually, they found out and let me go. In fact, I’ve lost a lot of jobs over the years because the seizures made me a liability.

I remember I had to carry a note to school telling my teachers I might have these episodes because when I had them I couldn’t talk to or understand people. My teachers learned that when I turned gray I was about to have a seizure. They knew to get on the phone and call an ambulance. I knew it wasn’t just migraines. I’ve never met anybody who could be in a room with a TV on when they have migraines. I did have the pain and vomiting people with migraines have. One doctor diagnosed me with ministrokes in my 30s. That also turned out to be wrong. In the meantime, I have worked in lots of different fields and lived all over. I installed security cameras at casinos in Las Vegas. Then I moved to installing alarm systems. In the late 1980s, I lived in Hawaii for a few years where I learned about karaoke. Nobody in the mainland knew about it at that point, so when I got back to Las Vegas in 1990, my buddy and I started a karaoke business and were pretty successful. My seizures get worse in the heat, so when we would have outdoor gigs, I couldn’t be out in the summer 18

caringvoice.org • Winter 2016 • In Your Words

I just kept doing things on my own and started getting into electrical work. My wife and I had another daughter. But the marriage didn’t work out. I raised our first daughter, and I still see the rest of our family all the time. We get along great. My daughters are 22 and 21. They’re good kids. They live in Michigan, where I also lived until this year. In the last few years, hospitals quit treating me for pain because of the addictiveness of pain medications. For a while they didn’t know how to treat me.

| In your words | It wasn’t until a few years ago that I found a doctor who could explain what was happening. He said I have complex partial seizures (CPS). He told me the more seizures you have, the worse they’re going to get. He also prescribed me a treatment that worked. For eight months on the medication, I only had two very minor episodes. Unfortunately, my mom had a grand mal seizure in December. I moved to Florida in April so I could be closer to her and help her out. In Florida I don’t have the coverage I need for the medication that works. Caring Voice Coalition (CVC) is helping me get access to treatment. Without treatment, I have seizures multiple times a week, sometimes every day, sometimes two in one day. I’ve tried a bunch of different things to manage the seizures on my own and haven’t found anything that works. But the medication I had in Michigan, if I can get access to it, will work. Once I have treatment again, I hope I can get to the point where I can say I haven’t had a seizure in a year—and then be able to get a job. I can’t stand sitting around. I don’t

“I can’t stand sitting around. I don’t say that to complain— I’m just making an observation.” say that to complain—I’m just making an observation. I am the type of person that needs to get on a ladder, put a drill in my hands, run some wire and make people happy. Electrical work is good for me because the work is in the shade or air conditioning, not out in the sun. My social life has also been impacted by CPS and really, that began even in high school. Kids weren’t sure how to be friends with someone going to the hospital every other week. My best advice for other people with CPS socially

is to just tell new people about it right away. It took me 30 years to be able to do that. If I would have known then what I know now, I would have just been honest with people up front instead of trying to think I could outwit them. That approach has helped a lot. I have two awesome fishing buddies here in Florida. These friends, they look at me and they know I’m having a seizure. I don’t even have to tell them and they’re right there for me. They’re constantly asking me: “Are you all right?” I have to say, “I’m fine. I promise I’ll let you know. I have a window of time where I can let you know.” I would tell people new to CPS to sit down right away after a seizure. Get to a cool place. Just relax. Let it do its thing. If you try to fight it, that makes it worse. It helps to get on your side, too. You might grit your teeth, which often makes your jaw sore the next day. If you’re lucky enough to have at least a sign that it’s coming, try to tell somebody. I learned to feel it happening in my body because my weight feels weak. I’ve also learned that keeping a consistent diet helps. When I change things up I have a seizure. I would tell anybody who doesn’t know anything about a seizure and sees one happening not to panic, and to keep the person on their side, call 911 and treat any wounds. Let them know everything’s OK. When you’re having a seizure, you can still hear, even if you don’t remember. So if you comfort them, that’s a big deal. My family has been very supportive. I love life no matter what, and I think that comes from my father. He loved life too. Lots of people take life for granted. I don’t do that. Every day I wake up feeling blessed. I never wake up in a bad mood. But sometimes I wake and have a seizure, and that can ruin my whole day. It makes me groggy and miserable and irritable. But it also makes me thank God I’m alive. And often I look back at the night before and remember I ate too much chocolate or too much salt. After your whole life getting seizures, you start to realize what can trigger them. But it’s easy to slip sometimes. I can’t thank CVC enough, and I don’t even have treatment yet, but just the fact that they’re going through what they’re going through for me—I’ve never had that happen before. All I can say is “thank you” in big letters. Life is too good. 19

| In your words |

Healing attitude Lisa Skeeters

My husband’s very good about taking care of everything during those times, and he helps me any way he can around the house. He’s an excellent caregiver. He takes everything in stride, handling the mountains of bills and insurance paperwork, and many other details I can’t get to.

I was born with a congenital heart problem, tetralogy of fallot (a heart defect marked by a hole in the lower chambers of the heart). I’ve had open-heart surgery twice for the problem, at ages 11 and 19.

My children have just grown accustomed to it. They don’t think anything about walking in the house and seeing me hooked up to oxygen. One of them, my 15-year-old, came in with a friend recently. He asked to do something, and when I told him he couldn’t, he made a joke about taking my oxygen. That’s how we are. Laughter is the best medicine. They’ve just grown up with it and they’re really good about helping around our home. And since I’ve been home throughout the last 10 years, I am available to run things to school if they need something. I think they appreciate having me around in that way.

Lisa Skeeters explains how a close-knit group of friends is the best medicine for her pulmonary hypertension.

The years went by and I did fine until I was in my late 30s and early 40s. And by that time I had married and adopted two little boys. My children are adopted because of my heart problems. I started experiencing shortness of breath, fatigue, and I had a couple of dizzy spells. I talked to my doctor and he sent me to Emory University Hospital in Atlanta. The doctor did a right-heart catheterization there, which showed that I had pulmonary hypertension (PH). I was diagnosed in 2006. I’ve just celebrated my 10th anniversary with PH. Having PH certainly slowed me down. I was teaching school—special education—at the time. I’m not a real sickly person, but I just started getting short of breath. When I was diagnosed, my doctor told me I couldn’t teach anymore. So I retired medically. My children were little at the time—they were 5 and 8. I stayed busy with them, but when they would go to school I would do light housework. Then I would take a nap in the afternoon. And I’ve continued that daily pattern, which helps a lot. Whether I take a nap or not, I lie down with my oxygen and just kind of get rebooted for the day. Now my children are 18 and 15. My parents are still alive and they still worry about me a lot. If I travel anywhere, go anywhere, they worry, but they have certainly been here for my children. Anytime I unexpectedly go into the hospital for anything, they’re there. 20

caringvoice.org • Winter 2016 • In Your Words

Lisa Skeeters, right, and her best friends since eighth grade enjoy a laugh.

I have a group of friends—our families call us “the heifers.” There are six of us who have been best friends since we hit it off in eighth grade—and this is kind of unusual in this day and time. We all grew up in the same city, and still live here. We get together for everybody’s birthdays. Four of us, “the fab four,” travel together every year. We also get together once a week and eat lunch. It’s really just a great group. We’ve been together through thick and

| In your words | thin. It’s just an unusual and neat thing, I think. A lot of people want to join us, but we tell them they have to be old and fat. We went to New York last year. We often go to Saint Simons Island on the coast of southern Georgia. Twice when we’ve been on Saint Simons my friends have had to take me to Mayo Clinic in Jacksonville, Fla., which is an hour and 15 minutes from the island. We’ve ended up in the emergency room because of my pump. So, now we just kid about packing extra clothes for the hospital. We kid that we’ll get to see the goodlooking doctor down there. We just plan around it. Last year, when we went to New York, we already had some hospitals that dealt with PH in mind in case I had a problem. So we just kind of work around it, and make the best of it. Lisa and three of her best friends take an annual trip together. Here, they visit New York.

I know the kind of support I have does help me stay healthier. It makes a huge difference. Attitude is everything. It gives me something to look forward to outside of my house. And my friends, they kind of take care of me. Having PH has taught me to appreciate every day—and really, to appreciate every breath. The times that I’ve had trouble breathing are not easy. We take this most simple thing for granted. So I appreciate breathing. It’s also taught me patience. I certainly can’t move around like I used to. I can’t do the things I used to do. That comes with getting older too, but PH sure slows you down.

If you have PH, I recommend finding out as much as you can about the disease. Make sure you’ve got a good doctor that you trust. I have met people that weren’t really sure about their doctors, and I think that would be horrible. This is a bad, bad disease, and you have to be able to trust your doctor to have your best interests in mind. Over the past 10 years I’ve seen awareness for PH grow. They’re doing a whole lot more research for PH now and developing more and better medicines. I’m not involved in a support group, because I guess I choose my friends and my family as my support group. I attended one a few weeks ago and it wasn’t something I found helpful to me personally. But I have a dear friend who heads a group in South Carolina and he lives for it. That works great for him. It’s about what works for you. I am a Christian and I do depend on my faith. “Through the fire,” it’s made me closer to God and I just am very grateful to him. I plan on outliving everybody. My grandmother, who was 98, passed away six months ago after driving home from church. She was cooking lunch and that’s how we found her. She is my angel and my role model and my ace in my pocket. So I plan on just living life to its fullest. I’m telling you, attitude—it makes so much difference. I think having been born with health problems helped determine my attitude. My parents never treated me like an invalid. They never let me use it as an excuse. I grew up with that approach and I’m really grateful to them because it has worked for me.

Brad Skeeters Brad Skeeters married Lisa in 1995. He began caregiving after her pulmonary hypertension diagnosis. He wanted to surprise Lisa by sharing a few words of his own appreciation and awe of her, especially her incredible attitude.

I always have people come up to me and say, “You look so good, you don’t look sick.” I hear this happens with a lot of chronic illnesses that don’t directly cause you to look like anything’s wrong. I’ve had people stare me down in parking lots I met Lisa during college and knew she had a heart condition. when I park in the handicapped parking spaces. It can make I remember her missing school when she had her second me want to rip my shirt open and say, “Hey, I have a medical open-heart surgery. We married in 1995 and while I was pump and scars that earned me this parking spot.” So, I think aware of her health, I wasn’t worried because I knew her the more people who understand that you don’t always know attitude and our love for each other was enough. what’s going on with a person in their life, the better.

Continued on 22

” s u t s u j s ’ “ It

| In your words |

A couple weeks before we were to be married, she received a letter from her cardiologist indicating it would be dangerous for her to become pregnant. At that time, my thoughts were not on having children; my thoughts were on this being the person I wanted to spend my life with, and if God decided we didn’t need to have biological children, so be it. Adoption at that time didn’t honestly even enter my mind. Fast-forward 20 years and we have two adopted sons, ages 18 and 15, and I don’t know what on earth we’d do without them! We learned about Lisa’s pulmonary hypertension (PH) diagnosis in 2006 after a new school year started. She was a teacher and she could hardly make the walk down the hallway to her classroom. We were very scared at first, but after learning more about the disease and after she began receiving care, we felt better. To be honest, Lisa’s diagnosis of PH has not been a huge change as far as our relationship. It has certainly impacted my life, but in ways you just adapt to. Checking on oxygen tanks, making reminders on prescription refills, keeping track of the doctor visits, prescriptions, being an advocate for her at the hospital, etc.—doing these things can sometimes be a job in and of itself, but it’s just part of the process. Caregiving brings me joy because I am able to be a part of the incredible example Lisa shows with her attitude. She is a fighter, she does not quit, and she never complains. Her parents did not coddle her or treat her like a “kid with a heart condition.” And in 2006, when we received the PH diagnosis, she took that in stride and kept on going the same as always. She keeps on going to this day—even when I know she’s having a difficult time. We have a saying together: “It’s just us.” We use that when the pump alarms with a blockage at 2 a.m. in the morning, and we know we have to get in the car and head for the hospital. It is a part of who we are as a couple, and I wouldn’t change it for the world. Is it frustrating sometimes? Sure—but God put us together for a reason. My advice for others who give care is to try to have fun with it, and always learn to laugh at yourself. You have to laugh to keep from crying sometimes.

caringvoice.org • Winter 2016 • In Your Words

Lisa and Brad with their two children, Bennett, left, and Davis.

From Lisa I have learned what it means to be an incredible example of love, determination and toughness. She has been this for our two incredible sons. They have been exposed to health-related issues that, thankfully, most kids don’t have to deal with: emergency room visits in the middle of the night, oxygen machine compressors running all the time, etc. These experiences will surely give them a level of maturity that will serve them well in their adult lives. The hopes I have for Lisa are a cure!, that the medicines continue to work and improvements are made with the delivery systems, that she is able to see our two boys graduate from high school, finish college and then find Christian young women to marry, and that we live a long life together. Both of our parents have provided excellent examples with over 100 years of marriage between them.

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| In your words |

Buckle up and keep going J. Daniel Miller was diagnosed with Huntington’s disease when he was 21. No one in his family had heard of the disease.

hen I was in middle school, I was having difficulty coping with school and life events in general. In school they labeled me with attention deficit hyperactivity disorder, known as ADHD, and Asperger’s syndrome. I wore braces on my legs and my back. In high school I became angrier and didn’t know why. I had difficulty with impulsivity. I physically ached and felt sore a lot. The anger got worse and they diagnosed me with bipolar disorder, but there was no explanation for my body’s physical shaking and constant movement that just kept getting worse. Continued on next page

caringvoice.org • Winter 2016 • In Your Words

| In your words | I had gone to the same pediatric neurologist in Chattanooga, Tenn., since I was 5 years old. He retired and I went to another neurologist who we didn’t find to be very helpful. My mom found another neurologist in Chattanooga and she immediately had genetic testing completed. That’s when they discovered I carry a gene mutation that causes Huntington’s disease (HD). I was 21 years old. She referred me to the Movement Disorder Clinic at Vanderbilt University Medical Center in Nashville. My doctor there has been wonderful. I finally got some help.

so that I won’t get nervous and start shaking too badly during the outing. I spill my drink when I shake. I have a hard time eating when I am shaking, which I am most of the time. I get embarrassed. My mom and dad are my biggest supporters. They take me to movie matinees because crowds make me nervous. I also have a half sister who takes me to movies. I had hopes of getting married and having a family. That is on hold. I don’t feel it would be fair to have children and have them go through what I am going through with this disease.

J. Daniel Miller in 2015, left, and with his father at his high school graduation in 2009. Daniel was diagnosed with Huntington’s disease at 21.

Neither my family nor I had ever heard of HD.* The closest thing in our family to this was an aunt who had Parkinson’s disease. My mom was tested and does not carry the gene. My dad is 71 and has no symptoms. So it was all new to us. For a while I attended a NAMI (National Alliance on Mental Illness) support group, but nobody in the group had ever heard of HD. Eventually I quit going. It would be nice to be able to attend a support group with other HD individuals, but the city I live in has no such support group. I am interested in connecting with others who have HD on Facebook. I am 25 now and it can feel like HD controls everything in my life. I had to give up driving because of the movement. I am 6’7”, so I can’t just drive any car. I have to have more legroom than most people. Even though my HD movement is somewhat controlled with medications, I didn’t drive for so long that I sold my modified Hyundai Accent. I have to be careful about family engagements and make sure I have taken my medicine well before we go anywhere

I feel isolated because most people don’t understand HD and if I am shaking they just stare. It makes it hard to make friends. My best friend is my cousin, Timothy. He lives in a different state and I don’t get to see him that often. I have two other half siblings who are older, and a younger brother who is in the Marine Reserves and doesn’t understand much about my disease.

I took some classes at our local community college. I dropped out during a difficult time with my disease. I hope to go back in the future and take more classes. My desire is to be able to live on my own, have some independence. But right now that is not possible.

I find encouragement and support from my therapist, my parents and God. I enjoy spending time with my cousin Timothy. I love watching movies and singing. Oh yes, and I have a 2-year-old nephew—he is a joy. Living with HD has taught me to live every day like it is your last. Because tomorrow may not come and if it does you may not be the same as you were the day before. For me, I just keep going and believe good things will happen in my life. I believe in prayer. To someone newly diagnosed with HD, I would say: Buckle up. The ride can get really bumpy. But even with the bumps, you have to keep going. *In most cases, HD is a genetic disease, which carries a 50 percent risk of inheritance. In rare cases like Daniel’s, the altered gene appears without any family history of the disease.

| In your words |

Faith and hope in life with Phelan-McDermid syndrome Jodi Frunzi’s 16-year-old son, Michael, loves making friends and talking on the phone.

hen our son Michael was 1 year old, doctors asked us standard developmental screening questions so they could take action if he was delayed. It turned out that he was behind in every area.

at school is friendship club twice a month and an integrated gym class. He recently joined two after-school clubs for which the school provides a paraprofessional, to ensure his safety and adequate participation.

We do face some challenges. We’ve put a lot of time into therapies to help We hadn’t really been around children that young and him—speech, occupational, physical, didn’t realize what milestones we should be watching for. applied behavior analysis (ABA), etc. He was just our sweet boy. They gave him early intervention At this point, he’s getting older and and described him as having a global delay. Until he was 5, he’s still so far behind his peers. Also we believed he was going to grow out of it with therapy. the last couple of years my husband, Then they did the FISH (Fluorescence In Situ Hybrid- John, has had a heart condition. ization) blood test, a genetic test that checks whether the It pushed me to try to get Michael 22q13 gene sequence is absent. It was, which meant he had more services by being more persistent Phelan-McDermid syndrome (PMS). After a study linked with the state offices. I wish I had been PMS to autism when Michael was 9, doctors also diagnosed more persistent earlier, but we always him with autism. thought he was going to catch up with I did have a period of sadness, for about three months, the little bit of help that he had. I now after recognizing this wasn’t something he was going to realize he probably needed so much grow out of. I came out of it when I realized: You know more. But the state has provided two what, we just treat the symptoms. It doesn’t matter what he people that worked on behaviors with has. We just have to keep going and try to help him as best him at home. We also have in-home we can. ABA through our medical insurance. He is 16 now and has the typical PMS symptoms: speech And we’ve found other helpful delay, apraxia, scoliosis, global delay, autism and the only services, family support organizations, physical trait he has is large hands. He also has microcephaly, programs and grants. which means the brain is small—it didn’t grow well. Before last year, two of Michael’s Michael is sociable and tries to relate to others the best he can. He’s constantly asking us for people he wants to spend time with, and he does speak in sentences up to 11 words. He’s such a kind, good-hearted boy. He always thinks of other people. For the most part he’s obedient. I wouldn’t trade him for the world. The only thing that makes me sad is when he’s sad. But other than that he makes us very happy.

favorite things were computer or TV. But I noticed he doesn’t want to do those this year. He always wants to be out doing things.

Top to bottom: 1-yearold Michael Frunzi, Michael on a family vacation, and Jodi and John with Michael at his middle school graduation.

He’ll ask me to go to the movies with one of his friends. He loves to talk on the phone with my dad. He even enjoys cleaning the house. He likes to clean the windows and he At high school, he’s in a self-contained, multiple dis- helps me do the laundry. The school has been working on ability classroom. The extent of his typical peer interaction teaching him life skills such as cleaning and shopping.

caringvoice.org • Winter 2016 • In Your Words

| In your words | It’s not easy for him to make friends. We went to the county fair this year and he saw kids he knew hanging out in a group and he cried. He’s wondering, “Why aren’t I with them?” What do you say? It was hard. People with PMS want to be accepted. They want to be part of the group, even though it might not seem that way because they’re not able to express it verbally. In the last few years, we have been so lucky. We found a Boy Scout troop. The parents are wonderful and the council modified the requirements for him. We also found Challenged Youth Sports, who rebranded recently as RallyCap Sports—they’re a great support and inexpensive. It’s all year long and they offer golf, tennis, dancercise, yoga, football, soccer, basketball and cheerleading. He also bowls through his school’s Special Olympics program.

“People with PMS want to be accepted. They want to be part of the group, even though it might not seem that way because they’re not able to express it verbally.” His high school is also a support. They try to integrate him as best they can, his teachers are caring, and peers are encouraged to be friendly and supportive. We attend programs held by the Elks Club and the Knights of Columbus as well. I also really appreciate our chiropractor. We found a great pediatrician in Philadelphia who has helped him get a bike with three wheels, an iPad and a walk-in shower—things that I wouldn’t have thought were possible to get, but that make a big difference for him. It was not easy to find such a helpful physician. She’s the first one we’ve had who is proactive that way, rather than simply treating his immediate health needs.

perspectives or strategies from books or ideas I’ve come across. I wonder if alternative or integrative care would have helped him earlier—checking for vitamin deficiencies, things like that. I’m doing more of that now. Don’t accept “no” when you think there’s something your child needs. When applying for help, make sure that you’re being honest. Parents sometimes don’t describe their needs accurately because they feel bad talking about their child as having deficits. My son still needs help with everything: dressing, feeding himself, etc. When I learned to be clearer about that, I found more useful resources. I’m learning also that I need to take care of myself more. Because if I don’t, I can get in a bad mood and it rubs off on Michael. He’s sensitive to that even if I’m not showing it. After I lost my job as a special education teacher in some layoffs at my school six years ago, I was home with Michael for the first time. I found I liked it. I decided I would go back to school and get other degrees until I have someone I really trust to help care for him. College is something that was good for both John and me to be able to do. Attending college has been a relaxation for us in that we have been able to focus on learning, interacting with people, and bettering ourselves. When you take care of someone constantly, you feel at times you are losing your own identity. Michael will graduate high school at 21. Doctors told us he will never live independently. We hope we can keep him home with us as long as possible. He has no siblings or close cousins, so it’s really scary for us to think about where he’s going to end up after we’re gone. My hope is that he will end up in a community that’s safe and caters to all his needs.

About six months ago, John and I were wearing down because it’s hard sometimes. Then a woman at church told my husband: “It’s the strangest thing, I just had this thought come over me that Michael was meant to be born and that We’re also taking part in two studies on Phelan-McDermid. I do want to help other children and I know there are God chose you and your wife for him.” That made me feel not many studies out there for PMS. One thing I would so much better. recommend for other families impacted by PMS is to try At times I can feel like I’m not a good parent, that I to get them into as many therapies as possible while they’re didn’t do enough—but then other times I feel like maybe younger so they have a better chance of being mainstreamed the things we did were good enough. He is talking and in school, even if it’s just for a couple of classes. we’re happy. And we keep faith and hope—we still have Research is also important. I’ve found some helpful plenty of time to do everything we can for him. 27

| Health |

Holiday health strategies Q&A with nutrition expert Sonya Angelone How can nutrition impact chronic illnesses?

Sonya Angelone is a registered dietitian nutritionist and an Academy of Nutrition and Dietetics spokesperson. She is the owner of a nutrition consulting firm and is a certified LEAP (lifestyle, eating and performance) therapist and certified lifestyle counselor. She holds a master of science in clinical nutrition.

Nutrition plays a significant role in not only maintaining health and wellness, but it also helps support the bodyâ&#x20AC;&#x2122;s disease-fighting capabilities. Good nutrition helps your immune system fight infection, maintains your muscle mass, provides good energy and helps decrease inflammation. Nutrition can also minimize the side effects of medications. It is important to meet your nutritional needs to help your body function at its best. What strategies do you suggest for adhering to low-sodium or other specific diets around the holidays?

To avoid excess sodium intake, choose less processed foods, which are usually

caringvoice.org â&#x20AC;˘ Winter 2016 â&#x20AC;˘ In Your Words

loaded with added sodium. Choose fresh items and season to taste at home with herbs and spices for flavor instead of adding salt. Read labels to know what you are eating. Be aware of those items that tend to be very high in sodium and try to make them yourself without added salt or limit the amount you put on your plate. These might include soups, sauces, gravies, broths, casseroles, even some breads or rolls. How can I communicate or prepare for my nutritional needs when attending holiday functions?

There are several strategies to help you keep your goals during this time of year. First, be sure to plan ahead. If you feel comfortable sharing your nutritional or health issues, ask the host what items they will be serving and let them

| Health | know what food restrictions you have. And, if you are not able to manage your eating, eat something before you go so you are not hungry and overly tempted by the food offerings. Also, offer to bring a dish and be sure it meets your nutritional guidelines. This way you can be sure to have something to eat. Is it OK to indulge or break my diet rules a little? If so, in what circumstance?

What considerations can I take to minimize fatigue and stress that tends to get worse around the holidays?

Besides good nutrition, it is important to pace yourself during this busy time of year. Holidays are filled with social gatherings with friends and family as well as additional shopping and other activities. These can be draining both physically and emotionally. Be sure to get plenty of restorative rest, proper exercise and good nutrition—including water to avoid becoming dehydrated.

Some diet rules can be broken as long as you don’t go overboard. However, depending on your chronic illness, What resources are trustworthy you may need to be vigilant all year for healthy holiday recipes or long. (If you don’t know whether that other nutrition-related advice? applies to you, talk to your doctor.) I recommend that people look for sites Manage your eating by considering from reputable organizations like the all the foods offered and choose a few Academy of Nutrition and Dietetics at of your favorites. Eat small portions eatright.org. You can find many ideas and be mindful of your eating to enjoy for the holidays including ideas for every bite. Be aware of the special entertaining, delicious recipes, advice functions that include food so you for holiday cooks, food safety, cooking are not overindulging several times with kids, specific nutrition advice for per week. Keep tempting holiday allergy-free meals, vegetarian options, treats out of your home and leave avoiding holiday weight gain, making them for special events. And, stock homemade food gifts and more. your kitchen with healthy foods so you have plenty of food options when Do you have advice for it is time to eat. Look for “healthy” someone with limited resources versions of favorite recipes or start new who would like the guidance of a nutritionist? traditions like cranberry salsa instead of less healthful options. Think of your Seek the advice of a qualified nutrinutritional needs as a food budget. tionist like a Registered Dietitian Spend your calories wisely so you don’t Nutritionist (RDN). You can also find overspend. And, be cautious with a variety of nutrition articles, recipes, alcoholic beverages. Their calories can food safety tips and educational videos add up quickly, they can decrease your for free at eatright.org. Be sure to check inhibitions and make it more difficult your local hospital for holiday lectures to maintain your health goals. Plus, and seminars that are open to the alcohol should be avoided when taking public. These talks are usually given by RDNs, and you can ask specific many different medications.

questions or find out about other local resources in your area. How might caregivers support their loved ones with chronic illness during the holiday season?

Holidays can be a stressful time especially if you have a chronic illness, which makes it difficult to manage the many activities that occur during the holiday season. Caregivers need to be in tune with the specific needs and concerns of their loved ones. It is important to have good communication, and be sure to ask how you can help. Some people need help getting out to make purchases, run errands, prepare special meals at home, or need help with simple decorating projects. Others might just want to get out to see the sights, participate in local festivities or attend holiday concerts. Do you have any other advice for keeping a chronic illness in check through the winter months?

Be sure to be as physically active as you are able, and practice stress management techniques. These might include mindful meditation, tai chi, exercise classes, deep breathing, talking to friends or loved ones, or listening to favorite music. Ask your physician for tips related to your particular condition or illness. Find support groups in your area that you can attend. They often have special speakers including RDNs. Combined with good nutrition and eating habits, these tips will help you have a healthy and happy holiday season.

Get started with some “healthified” holiday recipes on the next page!  29

| Health |

Clean up your holiday cravings With the season of holiday potlucks, family gatherings and work parties comes the need to have a supply of treats on hand. But if you’re trying to stick to a clean diet, the go-to recipes for this season of indulgent celebrations can be hard to navigate.

caringvoice.org • Winter 2016 • In Your Words

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We’ve healthified a few old classics for you on the following pages. Additionally, here are some ideas so you can do the same to your own favorite holiday recipes: ÎÎ Swap fats like oil, butter and eggs with the same amount of applesauce.

ÎÎ Reduce sugar, or replace it with an unrefined version such as: maple syrup, agave nectar, sucanat, coconut sugar, raw cane sugar, overripe banana, dates or molasses. (Learn about the differences here.)

ÎÎ Unsweetened almond milk can replace milk.

ÎÎ Heavier dairies (sour cream, whipping cream, half and half, etc.—even butter) can be swapped with Greek yogurt.

ÎÎ Darker chocolate is better than more sugary, fattening milk or white chocolates.

ÎÎ You can replace some grains with cooked chickpeas and beans if you’re OK with a denser texture.

ÎÎ Eggs can be replaced with applesauce, chia seeds or flax meal.

ÎÎ Increase nutrients to any recipe by adding healthy spices, flax or chia seeds, nuts, oats, vegetables and fruits.

ÎÎ Or choose recipes that already include those healthier ingredients, such as pumpkin cookies or coconut macaroons.

ÎÎ Avoid partially hydrogenated oils and artificial flavors or colors when possible.

ÎÎ Whole-wheat, whole-wheat pastry or white whole-wheat flours have more fiber and/or protein than all-purpose white flour.

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Try these healthier takes on some old holiday classics. Snowballs: 5 tablespoons butter, softened 3 tablespoons Greek yogurt ½ teaspoon vanilla 1.5 cups whole-wheat pastry flour* ½ cup quick oats ½ cup finely chopped walnuts ¼ cup powdered sugar ¼ teaspoon cinnamon ¼ teaspoon salt more powdered sugar, for rolling

Buckeyes 2 cups smooth, natural peanut butter (or nut butter of your choice) ¼ cup honey ¼ cup butter, softened 1 teaspoon vanilla up to 1 cup powdered peanut butter or protein powder, as needed 1 cup dark chocolate chips 1 tablespoon coconut oil (helps with consistency, but can be skipped if preferred) Mix together peanut butter, honey, butter and vanilla. Add powder at ¼-cup increments until mixture thickens. Refrigerate for about 30 minutes then roll into balls. Chill for about an hour. Add oil to melted chocolate chips. Using toothpicks, dip chilled balls into chocolate slightly more than halfway. Place on wax paper. Chill until set, then store in refrigerator or freezer.

caringvoice.org • Winter 2016 • In Your Words

Mix butter, yogurt and vanilla until smooth. Stir together dry ingredients. Add to wet ingredients until well combined. Roll spoonfuls of dough into balls. Drop on greased baking sheets. Bake at 325 degrees for 20-25 minutes. Roll in powdered sugar after cool. *all-purpose flour can substitute for whole-wheat pastry flour

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Gingerbread cookies ½ stick butter, softened ²⁄³ cup dark brown sugar ½ cup applesauce 1 tablespoon orange juice 1 large egg ¹⁄³ cup dark molasses 3 cups whole-wheat pastry flour, extra for dusting* 1 teaspoon baking soda 2 teaspoon ground ginger 1 teaspoon ground cinnamon ½ teaspoon allspice ⅛ teaspoon black pepper Combine dry ingredients in a large bowl. Mix wet ingredients separately. Pour dry mixture into wet. Chill for two or three hours. Roll out dough on floured surface to about 1/8-inch thickness before cutting cookies. Bake 15-20 minutes at 350 degrees on parchment paper-lined baking sheets. (Adapted from skinnytaste.com.) *all-purpose flour can substitute for whole-wheat pastry flour

Candied nuts 2-cup combination of raw walnut halves, almonds, pecans ¼ cup maple syrup 1 teaspoon cinnamon 1 egg white

Need more ideas?

You can find plenty of healthy holiday recipes on our Pinterest board!

1 tablespoon water Whisk together egg white and water for about two minutes until frothy. Combine nuts and egg mixture evenly. Separately, stir cinnamon into maple syrup. Evenly coat nuts with syrup mixture. Spread nut mixture evenly onto baking sheet lined with parchment paper. Bake for 30 minutes at 300 degrees, stirring once.

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Legal corner

What to expect after an SSA disability approval We designed the first three Legal Corner installments this year (found in the Spring, Summer and Fall issues) to walk you through the Social Security Administration (SSA) disability application process. In this final installment for 2016, we aim to prepare you for life while receiving disability benefits by answering a few common questions about the process.

first check can be paid by paper (giving you funds to open a bank account), and from that point forward, you will receive your payments via direct deposit. If you don’t want to receive direct deposits, SSA offers a debit card option.

I’ve heard SSA might review my case again. Is this true?

When will I get my disability check and how will it be sent to me?

A Continuing Disability Review (CDR) is a routine review done by SSA to make sure you are still disabled and entitled Whether your claim was approved in one month or two years, to your benefits. How often you receive a CDR depends on your disability payments can never arrive soon enough. Your how likely SSA thinks it is that your medical condition will first Social Security benefit will be paid on the sixth full improve. SSA assigns all recipients one of three categories: month after the date SSA found you became disabled. In ÎÎ If medical improvement is expected, SSA will review other words, if SSA found you disabled on Sept. 20, 2016, the claim in six to 18 months. your first monthly benefit would be paid to you in March of ÎÎ If medical improvement is possible, SSA will review the 2017. Social Security benefits are paid out the month after claim every three years. they’re due—similar to an electric bill paid the month after ÎÎ If medical improvement is not expected, SSA will review the services were used. As such, the benefit due for March the claim every seven years. would be paid to you in April, and so on.

ÎÎ If your birthday is from the 21st to 30th of a month, you will receive a check on the fourth Wednesday of every month.

The internal schedule for review is set at the time of approval (and not communicated to you, as the beneficiary). When you are selected for a CDR, you will receive written notice from SSA along with forms to fill out and return. Do not panic—over 90 percent of adults who undergo CDRs have their benefits continued—but also don’t ignore it. Complete the forms exactly as instructed and return them to SSA in a timely fashion. SSA will closely review your file and obtain updated medical evidence. In order for SSA to terminate your benefits, it must prove that you have experienced substantial medical improvement. This burden of proof is difficult to meet.

Until fairly recently, most Social Security disability recipients received a paper check in the mail. The SSA now requires beneficiaries to receive payment electronically. The

If SSA finds that you have experienced substantial medical improvement, it will mail you a notice ending your benefits. You have 60 days to appeal this decision by

The exact date your Social Security checks will arrive depends on your date of birth. ÎÎ If your birthday falls on the first 10 days of a month, you will receive a check on the second Wednesday of every month. ÎÎ If your birthday is from the 11th to 20th of a month, you will receive a check on the third Wednesday of every month.

caringvoice.org • Winter 2016 • In Your Words

| Health | submitting a Request for Reconsideration form. The appeal process of a CDR is congruent with the initial appeal process. You can request a paper review of your termination or a face-to-face meeting with a disability hearing officer. If your reconsideration request is denied, you have another 60 days to request a hearing with an Administrative Law Judge. Important note: If you want to have your benefits continued during the time SSA is deciding your case, you need to submit the Request for Reconsideration within 10 days of receiving your denial and specifically ask for your monetary and/or insurance benefits to continue during the appeal. If, at the end of your CDR appeal, SSA finds you ineligible for continuing benefits, they could seek overpayment for that which was paid to you during the appeal process. But that is rare, unless SSA finds your appeal is “frivolous,” meaning it has no legal basis. As an SSA beneficiary, you are likely to receive a CDR notice at some point in your life. So, here are a few suggestions to prepare for a CDR: ÎÎ Maintain a good relationship with your doctors and seek consistent treatment. ÎÎ Keep a list of all medical tests and treatments. ÎÎ Notify SSA of any change in your mailing address. If you do not receive your CDR notice and take the necessary steps to appeal, you could be denied.

month, you are not required to report the earnings and your disability will not be impacted. After nine months of work above $810, you move into the extended period of eligibility. Your Extended Period of Eligibility (EPE) starts the month after your TWP ends whether or not you are working that month. The EPE lasts for 36 months (three years) regardless of work activity. During these 36 months, if you earn below $1,130*—the substantial gainful activity (SGA) threshold—your disability benefits will continue, but on the first month that you earn above $1,130*, SSA will find that you no longer meet the requirements for disability due to work and benefits will cease. You will get paid for the month your disability ceased and the following two months (i.e. three-month grace period). If your earnings fall back below SGA during these 36 months, SSA can restart your benefits without a new application. (See “Dispelling Disability Myths” for more about SGA, trial work and other disability nuances.) If you were a prior SSDI or SSI beneficiary and your benefits ended because of work after the EPE, you can request that your benefits start again without having to complete a new application. This is called Expedited Reinstatement and the criteria are as follows: ÎÎ You are unable to work or perform SGA.

Can I work at all and still receive my monthly SSA benefits?

ÎÎ You are disabled because of an impairment(s) that is the same or related to the impairment(s) that allowed you to get benefits earlier.

Social Security has several special rules that can help if you want to work.

ÎÎ You make the request within five years from the month your benefits ended.

The Trial Work Period (TWP) allows you to test your ability to work without the threat of losing benefits. Under the TWP, you have nine months (that do not have to be consecutive) in every rolling 60-month (five-year) period in which you can work at any threshold and continue receiving monthly disability benefits and insurance coverage. You must receive Title II Social Security Disability Insurance (SSDI) benefits to qualify. If you receive only Title XVI Social Security Insurance (SSI), you do not qualify. The TWP starts the first month you make over $810* gross in active earnings, beginning on the date of your first monthly check (your date of entitlement). While applying for or receiving SSA benefits, if you make less than $810* in a

Provisional payments (cash payments and Medicare/ Medicaid) may be paid for up to six months while your expedited reinstatement decision is being made. If you are approved for expedited reinstatement and you had an auxiliary (ex: dependent child) on the original record, they must file a new application for benefits but their benefits can also be reinstated.

*These thresholds are for the 2016 calendar year and amounts will change, effective Jan. 1, 2017.

CVC Senior Patient Advocate Lauren Patrizio, Esq. is a graduate of Virginia Tech in Blacksburg, Va., and Roger Williams University School of Law in Bristol, R.I. She is a member of the Virginia State Bar.

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Prepared patient checklist A checklist for before, during and after your next appointment, by Dr. Robert E. Mayfield, M.D.

hen living with chronic illness, especially a rare and life-threatening one, doctor visits are frequent and part of the routine. To be your best advocate, you must prepare for your visits and the following is a checklist that can help. After all, your relationship with your doctor is one of the most important you will have, and you are your own best advocate. You will better advocate for yourself if you are an active participant in every appointment. It is equally important for you to know, understand and research your illness. Knowledge equals empowerment.

Prior to visit Take all of your medications, or an up-to-date list of them. Medication errors are very real and taking this step will help avoid duplicating therapies or leaving off a medication that is important for you. Also, the nurse or your treating physician is required to document that he or she reviewed all of your current medications with you. Include over-the-counter medications you take. Be aware of and communicate any refills you may need. Keep a symptom diary. Forgetting your symptoms or adapting to slowly progressive symptoms is easy to do. Writing it down (in something like this wellness journal from caringvoice.org) makes your doctor aware of any progression of your illness. Be as detailed as possible. Don’t simply say, “My back hurts.” Describe the things that make if better or worse, the quality of the pain, any radiation to other areas and its severity. Know your primary goal. Know what you want from an appointment when scheduling it. You don’t need to tell a receptionist all of the details, but do communicate whether you have multiple issues to ensure adequate time is allotted for your visit. 36

caringvoice.org • Winter 2016 • In Your Words

Prepare a list of questions. Doing research and thinking through your needs helps involve you in your own care and is a simple but effective way to reduce anxiety before an appointment. Two sites that are trustworthy for researching health questions are Mayo Clinic and National Institutes of Health. You might ask questions such as: How many patients like me have you treated? How severe is my illness? What steps can I take to stay as healthy as possible? Why am I taking this medication? Prioritize your list. This ensures important questions you have are answered. Realize that time constraints may not permit all of your questions to be answered and you may require another visit. Ask a friend or relative to accompany you. This can be beneficial for easing anxiety or taking care of extra details like driving. They may provide a second set of ears during your visit. Take your insurance information. Medical offices must confirm this information at every appointment. They also may ask for a photo ID and updated contact information.

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During visit

After visit

Try to relax and keep a clear mind so that you can

Make sure you understand when you will return for follow up.

communicate effectively.

If your doctor uses an electronic medical record (most do), get a visit summary.

Review your list of questions with the doctor. Pay attention to time. Doctors have a limited window for appointments, and if you still have questions, suggest a follow up. The doctor would be very appreciative.

Listen carefully and take thorough notes. Repeat what

the doctor has told you to be sure you understand. Ask for clarification if needed.

If your doctor orders any testing, be sure to ask how the

results will be used to manage your illness or guide your therapy. If a test is not going to change anything, then it should not be performed. Similarly, understand the reasoning behind any new prescriptions.

Immediately after the visit, organize your questions and the doctorâ&#x20AC;&#x2122;s answers so that you do not forget. If you find there is something you still do not understand, calling or emailing the office is always appropriate. Follow through and adhere to any new treatment regimen. If you experience any side effects not communicated during your visit, notify your doctor. Also, let your physician know if the medication is not affordable so that he or she might find an alternative or alert you to assistance that may be available. If your doctor orders any testing, you may want to check with your insurance regarding costs. If it is unaffordable, communicate with your doctor for alternative options.

Take it with you! Click here to download a free printable version of this checklist from our website.

| Final thoughts |

Healing “These pains you feel are messengers. Listen to them.” –Rumi, The Essential Rumi

“Some people see scars, and it is wounding they remember. To me they are proof of the fact that there is healing.”

Encouragement

“We cannot change anything until we accept it.”

“… hope is precious, and you’re right not to give up.”

–Carl Jung

“Change is one thing. Acceptance is another.”

–C.J. Redwine, Defiance

“Here is the world. Beautiful and terrible things will happen. Don’t be afraid.”

–Arundhati Roy, The God of Small Things

–Frederick Buechner, Beyond Words

–Linda Hogan, Woman Who

Strength

Watches Over the World

“There are some things you learn best in calm, and some in storm.” –Willa Cather, The Song of the Lark

No one can make you feel inferior without your consent.

Perseverance “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.” –Saint Francis of Assisi

Acceptance “My happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectations.” –Michael J. Fox

“The only thing a person can ever really do is keep moving forward. … Take that big leap forward without hesitation, without once looking back. Simply forget the past and forge toward the future.” –Alyson Noel, Blue Moon

caringvoice.org • Winter 2016 • In Your Words

–Eleanor Roosevelt

“The world breaks everyone and afterward many are strong at the broken places.” –Ernest Hemingway, A Farewell to Arms

"Never give up, for that is just the place and time that the tide will turn." –Harriet Beecher Stowe

“Even the darkest night will end and the sun will rise.” –Victor Hugo, Les Misérables

We’re Here to Help. (888) 267-1440 CVCinfo@caringvoice.org www.caringvoice.org

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