COMMUNITY Magazine, Spring 2013 - The Caregiving Issue by Caring Voice Coalition

The Caregiving Issue Your guide to caregiving for a chronic illness C are

Volume 2 • Issue 1 • Spring 2013 • The Quarterly Publication of Caring Voice Coalition, Inc.

We’re Here to Help

Who Are We?

• Complex Partial Seizures

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

• Huntington's Disease

How We Help

The Diseases We Support • Alpha-1 Antitrypsin Deficiency

• Chronic Granulomatous Disorder • Congenital Factor XIII Deficiency • Infantile Spasms • Narcolepsy

• Pulmonary Hypertension

CVC’s programs are a direct response to patient needs. We recognize that, 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

Visit Us Online www.caringvoice.org

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SPRING CONTENTS 4

Letter from the Director of Finance

Letter from the Vice President

Patient Association Profile: Coalition for Pulmonary Fibrosis

Your Guide to Caregiving

In Their Words: Mike Dermer

Newsmaker Q&A with Rino Aldrighetti

Newsmaker Q&A with Dr. Daniel Rose, M.D.

What Will The Affordable Health Care Act Save You?

Staff Publishers

Editor in Chief

Artistic Director

Pamela Harris pharris@caringvoice.org Samantha Harris sharris@caringvoice.org

Alex Withrow 888.267.1440, ext. 144 awithrow@caringvoice.org

Taylor Scott 888.267.1440, ext. 117 tscott@caringvoice.org

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

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

Graphic Design & Illustration Anthony Nesossis 888.267.1440, ext. 174 anesossis@caringvoice.org

Please recycle this issue.

Notice the person and not the patient. Oxy Couture is proud to have developed a nasal cannula cover that is washable and interchangeable. We have designed these covers to aid in the prevention of break down of the skin from the tubing due to prolonged oxygen wear. At Oxy Couture we address not only your comfort but your need for individuality. Our covers come in many styles, and can even be customized to your personal needs. At Oxy Couture we want people to see the person, not the patient.

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MADE IN THE USA

all of the stories featured in “ Not this issue have a happy ending, but I truly believe that this magazine is an accurate reflection of what it means to care for someone with a chronic illness.”

Alex Withrow

Letter From the Editor Melissa and Nick Philopena haven’t had it easy. Their son was diagnosed with an incurable disease when he was three months old, and in the time since, the Philopenas have lost jobs, foreclosed on their home, traveled thousands of miles to sit in hundreds of doctors’ offices – you name it. Now, as a journalist, part of my job is knowing when to pry, when to ask the right questions at the right time, without scaring off whoever I’m talking to.

Noting that, I don’t believe the word “pry” is in Melissa Philopena’s vocabulary. When I raised the question of how a couple maintains a marriage without seemingly having anytime to themselves, she cut me off and said, “Oh, I don’t care. You can ask me anything. Let’s talk about that.” So, we did. The result produced as candid and honest an interview as I’ve ever written. And that pretty much sums up the tone of our caregiving issue: it’s frank, real, and unflinching. Not all of the stories featured in this issue have a happy ending, but I truly believe that this magazine is an accurate reflection of what it means to care for someone with a chronic illness. It’s always Community’s intention to tell the truth. Truth through education. Truth through pain. Truth through understanding. Keep fighting.

We Welcome Your Feedback and Questions. COMMENTS FROM OUR READERS “As a PHA patient resulting from my lung fibrosis, while not ‘bed-ridden,’ I realize that sometimes I am slipping, and [your magazine’s] comparative patient articles are helpful to get an idea of how on track my treatments are and what may lie in future research. Again, great success for your publication and efforts on our behalf.” John, Puerto Rico

.....................................................................................................................................

“I read the latest issue of Community and, as always, found it interesting and informative. I'm the caregiver for my husband, who was diagnosed September 6, 2006 with Huntington's Disease. I just wanted to say thank you so very very much. I truly have no idea what we would have done without you.” Debbie, Vermont

magazine@caringvoice.org

@CVCinc

/CaringVoiceCoalition 3

person’s experience as a “ Each caregiver is different, but we can

all benefit from advice, educational resources and an empathetic ear.” Rebecca App

Letter From the Director of Finance February 4, 2013 marked the official 10-year anniversary of the incorporation of Caring Voice Coalition. CVC started out with two brave, visionary co-founders, one rare disease state, a handful of patients and a lot of prayers. Ten years later, our staff now numbers 65 passionate employees. We have served more than 40,000 patients in 12 orphan disease states and have granted nearly $200 million dollars in financial assistance. I am so pleased to be a part of such an amazing organization. One with core values such as passion, commitment and service – values that our organization implements each day.

I hope that you look forward to reading Community magazine as much as I do, and are excited for each new season when we publish the next issue. In this quarter, we have chosen to spotlight the role of caregivers. Our goal at Caring Voice has always been to support our patients in the most holistic way possible. This support has always extended to include the caregivers – children caring for their aging parents, friends caring for a homebound neighbor, or parents taking care of a chronically ill child. The caregivers we spotlight this month are both fighters and patient advocates. They deserve our admiration, recognition and support. Each person’s experience as a caregiver is different, but we can all benefit from advice, educational resources and an empathetic ear. From the CVC family to yours, we hope that this issue of Community provides some inspirational stories and empowers you to help yourself as well as your loved ones.

We need your donations. This magazine would not be possible without your contributions. Community Magazine is funded fully by your donations. Please consider donating to Caring Voice Coalition, and in return, we will dedicate ourselves to providing pertinent, educational content through this publication. Thank you very much for your generosity.

caringvoice.org • Spring 2013, The Caregiving Issue

MAIL YOUR DONATION

DONATE ONLINE

Caring Voice Coalition 8249 Meadowbridge Road Mechanicsville, VA 23116 888-267-1440

www.caringvoice.org

good news is that you don’t “ The have to be a medical expert, a

superhero, or a saint in order to be a good caregiver.”

Samantha Harris

Letter From the Vice President Providing care for a family member or friend in need is a commitment of kindness, love, and loyalty. As medical treatments and therapies continue to advance, and there are an increasing number of people who live with chronic illnesses, more and more of us will participate in the caregiving process.

There are many different types of caregiving situations. It may involve taking care of an aging parent or a spouse with a chronic disease. Or perhaps you’re caring for a child who is faced with a physical or mental illness. Regardless of your particular circumstance, you’re facing a challenging new role.

If you are like most caregivers, you have not been trained for the responsibilities you now face each day. Most likely, you never anticipated you would be in this situation. The good news is that you don’t have to be a medical expert, a superhero, or a saint in order to be a good caregiver. With the right help and support, you can be an effective caregiver without having to sacrifice yourself in the process. At times, caregiving can be stressful. Learning to manage stress is part of being a good caregiver, which is not as difficult as you may think. The key is realizing you are not alone and you should not try to take on this responsibility single-handedly. There are community resources and support groups available – people have a huge ability to help one another. As a caregiver, you may find yourself facing a multitude of new responsibilities, many of which are unchartered territory. At times, you may feel overburdened, and in need of information or emotional support. There are many resources out there to help and support those who are caring for a loved one. Despite all of the many challenges, caregiving can also be an extremely rewarding experience to those individuals who continually give of themselves.

Subscribe to Community Magazine. One year gets you 4 issues for $10.00 Subscribe at www.caringvoice.org or email magazine@caringvoice.org

Have you missed past issues of Community Magazine? View every edition digitally at CaringVoice.org, or email magazine@caringvoice.org and we’ll send you back issues right away.

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Your Guide to Caregiving 8 Shadowing a Caregiver: A Day in the Life of a Family Affected by Chronic Illness 14 Climbing the Caregiver Assertiveness Ladder 16 10 Steps to a New Beginning 17 Legal Corner: Do I Need a Power of Attorney? 18 A Generational Fight with Pulmonary Fibrosis 19 Reaching Out to Others for Support 20 Finding Support through Social Media 22 Infographic: A Caregiver's Toolkit 24 The Pursuit of Happiness: How a Mother and Father Strive to Help Their Chronically Ill Daughter

Josh Castlebury with his daughter, Carter. See page 24 for their story.

caringvoice.org â&#x20AC;˘ Spring 2013, The Caregiving Issue

Care I’ve long considered caregivers to be the unsung heroes of chronic illnesses. There are a lot of people involved in a person’s fight for their health, and I’ve looked forward to the opportunity to be able to dedicate an entire issue of Community magazine to the caretakers who deserve more attention.

When I pitched the idea of a caregiving issue, the notion of shadowing a caregiver popped into my head and refused to leave. I spent months trying to find a family that would entrust me to come into their home, examine their daily activities, and articulate everything I saw into print. I was fortunate enough to come into contact with Melissa Philopena late last year, and in December, she and her husband, Nick, invited me to spend the day with them in their Northern Virginia home, observing how they care for their three-year-old son, Tyler Jacob. The result was an eye opening experience void of insincerity. It was a day, in short, that I won’t soon forget. “Hi mommy.” “Hi Tyler.” “Hi mommy.” “Hi Tyler.” Tyler Philopena likes to repeat things. He gets something in his head, and he says it over and over, his voice steadily rising with each repetition. Right now, he’s playing a verbal game of Tag You’re It with his mother, Melissa. They keep this up for a few seconds, before Tyler laughs it off and continues to slowly eat his Angry Birds-themed Cheese Nips. He’ll eat those for about three more minutes, then stand up and run around, play with his toys, watch TV, before returning to eat. Five minutes of eating, 10 minutes of playing. Eat. Play. Repeat. And this, Melissa tells me, is pretty much the way it goes. “The stopping and going with food is just one thing, because really, it’s with everything,” Melissa says. “Another example, and this is rare, but he’s actually slept through every night this week. He’s usually up a few times during the night, but he’s been able to stay down recently. I have to remember that he’s only three. A lot of my friends tell me when their kids were three, they were up and down all night. So Tyler’s sleep pattern could be because of his seizures, his disorder, or the fact that he’s three. This week, he’s been out at 8 p.m. and up at five. Now, how long will this last? Who knows? But that’s the way it goes with most things.” Tyler was nearly four months old when he suffered his first seizure. CONTINUED ON PAGE 10

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Melissa and Nick rushed him to the doctor, who said if it happened again, to take Tyler to the emergency room immediately. Which is exactly what they had to do later that night. “We didn’t see it, we heard it,” Melissa said. “It only lasted about a second, but it was the kind of scream you wouldn’t expect a four month old to make. We rushed him to the ER, they transferred him to another facility, and it was there that we learned Tyler had tuberous sclerosis.” Tuberous sclerosis is a rare, chronic disease that currently has no cure. With Tuberous sclerosis, changes in the TSC1 and TSC2 genes can cause developmental delays, seizures, and the formation of tumors on the organs. Because Tyler is lacking at least one of these genes, he has multiple clusters of tumors on his brain, heart, kidneys, and elsewhere. These tumors, in theory, can appear on any of Tyler’s organs, and he will have them for the duration of his life. As a result of the tumors, Tyler has infantile spasms. And, because the tumors form in clusters, they are impossible to localize, and thereby cannot be removed from his brain. Because of this, Tyler will undoubtedly have seizures for the rest of his life as well. “For the first year and a half, we couldn’t find any medicine that fully controlled the seizures,” Melissa says. “When his seizures began, they lasted a few seconds, but everyday, they got longer and longer. And they’re the scariest things. Because there’s nothing we can do. We can’t stop them, we can’t give him something to

make them magically go away, you just ride them out. And I’m not a person who likes to wait on things.” Melissa Philopena is a woman who does not sit idly. She talks fast, she talks loud, and she tells it like it is. Her husband, Nick, is the antitheses. He is quiet, yet open when need be. Reserved, but always polite. It’s clear that both Melissa and Nick have huge hearts, and that their respective passion for their son’s health manifests itself in slightly different ways. If there was ever an instance in which opposites attract, this is surely one. “I’ll be the first to admit that I’m not a patient person,” she says. “Yes, I’ve been asked to leave a handful of doctor’s offices before, but this has to do with my son. My son who has a lot of trouble sitting still for any length of time. My son who is loud and playful and restless. They don’t want Tyler sitting and waiting, trust me. It makes him nervous, it makes everyone around him nervous; it stresses him out, and I won’t allow him to wait.” So, a solution. (Or, perhaps, an ongoing ultimatum.) “The doctors and hospitals know when I’m coming, and they know to see us at the time of our appointment. I always call ahead and tell them we’re on our way. And that they should be ready to see us. “This all started because Tyler had to have a procedure on his eye. We went to the hospital, and they made us wait for five hours. Five. Hours. I told the nurse we were leaving, and she said we couldn’t take him out, because we had technically already signed him in. Needless to say,

caringvoice.org • Spring 2013, The Caregiving Issue

we were gone within 20 minutes, and we haven’t been back to that facility since.” Another aspect of Melissa’s refusal to bow down is her willingness to change doctors. If she’s not happy with a doctor’s diagnosis (or lack thereof), then it’s on to the next one. “You can’t sit there and tell me, ‘Well, I don’t know.’ You don’t know? That’s not good enough for me. Tell me something. I understand that there are not definite answers when it comes to this disorder. And I respect when a doctor tells me that he doesn’t have a reason or a solution right then and there. I’d rather he tell me that than lie, but you can’t expect me to sit around and wait. Someone knows. And it’s my job as a mother to find that person. “I see it all the time. I see parents accepting what doctors tell them. They just deal with it, and they’re miserable because they haven’t gotten the answers they want. I’m not saying they’ve given up, but they just won’t fight. You cannot take one doctor’s word for it. You can’t. Tyler can’t fight for himself. So who’s going to do it? That’s my job. That’s Nick’s job. I can’t imagine doing it another way.” After hearing her fair share of “We don’t knows” and “We’ll have to wait and sees,” Melissa took to the Internet to find someone who would not only know, but be able to help. After months of searching, she finally located a globally renowned neurologist based in lower Manhattan. “Because this doctor was so known, there was a long waiting list to see him,” she says. “So I called his office everyday and

Care basically begged. One day, he said if we could be there first thing in the morning, then he’d see Tyler. We packed up, left for New York in the middle of the night, made it to his office by 8 a.m. Once we got there, the doctor said he wasn’t going to let Tyler leave until he knew he did everything he could to help him. And when he said that, I knew we were in the right place.”

Because of the frequent trips to New York, Melissa was let go from her job. And because insurance doesn’t cover many of Tyler’s medical treatments, Melissa and Nick’s savings quickly began to absorb. They sold their house, moved in with Melissa’s parents and continue to make financial sacrifices. Sacrifices made readily available, in part, due to Melissa’s tenacious research.

The trips to New York became constant, and costly. The Philopena’s would drive up to New York for a week, come back home to Virginia for two or three days. Back to New York, back home. A pattern that repeated itself for months, and caused continued financial strain on the family.

“Staying in lower Manhattan is expensive,” Melissa says. “A hotel is going to run you several hundred dollars a night. So I did some research online and discovered that Tyler’s Neurologist had started FACES, an apartment near the hospital that families can use when their child is getting any procedure done in the hospital. We usually go for about a week, so we stay in this apartment and everything is covered. The organization accepts donations from people, and they are able to keep this apartment available specifically for this reason. That apartment has been a huge help. And I just found it online. Waiting to be discovered.”

“They’d put him on a new medicine, we’d go home, the medicine wouldn’t work well, so we’d go back up,” Nick says. “Tyler was on a lot of medicine at this point, and it was all about finding the right balance. Believe me, once you’ve seen those seizures – once you’ve heard them – it’s not a noise you never want to hear again.”

CONTINUED ON PAGE 12

Patience

ANGER

F i n a nc i a l B u rdens Re f u s al

InfantileTuberous sclerosis spasms “Tyler can’t fight for himself. So who’s going to do it? That’s my job. That’s my husband’s job. I can’t imagine doing it another way.”

Left: Melissa and Nick Philopena play with their son, Tyler. Opposite page: Tyler enjoying a snack.

Care Financial burdens are just one part of the problem with chronic illnesses. When a child is involved, an aspect that often gets pushed aside is that of a couple’s marriage. While Melissa spoke of the monetary hardships and day-today complexities of caring for Tyler, I wondered if her relationship with her husband has ever suffered. “Soon after Tyler started having problems, I was sitting with my mom in the hospital and she said, ‘You and Nick need to figure out how you’re going to deal with this as a couple,’” Melissa says. “In the beginning, we were in shock. We were hopeless. There was no focus on us. All of our attention was on Tyler. All we wanted to do was stop this poor boy’s seizures. “Nick is a very patient person. If he was impatient like me, then it wouldn’t have worked. You can’t have two people screaming and going off on each other. Nick was very good at saying, ‘Okay, let’s calm down and take a step back.’ Without that, our marriage wouldn’t have worked. If he would’ve attacked my impatience, then I would’ve pushed him away. But instead, he listened and he understood.” Nick agrees, but he’s also quick to point out the benefit of an intolerant mother. “To be clear here,” Nick says, “Melissa’s controlled anger has been helpful in a lot of ways. It got us a lot of results for Tyler more quickly than it might have if we sat around and waited. That’s an important distinction to make.” In addition to maintaining a healthy balance of patience, encouragement and determined resolve, Melissa says there are a few other factors essential to keeping a happy family in the face of adversity. “Nick and I are now better at taking time for ourselves,” she says. “There’s a need to go away for an hour and have dinner together, just the two of us. You have to take time for yourselves. Go to the movies, go watch a game, go for a walk, go to the grocery store. Just do

something. If you don’t, then you may grow to resent yourself and the people who love you. “Another thing: Don’t be afraid to step outside with your child, knowing that you’re different. Yes, we might get looks from people if we take Tyler to a restaurant. He can be loud and anxious – but who cares? I refuse to let my son live in a bubble. I have every intention of keeping our family just that: a family.” Equally as important as developing your marriage and maintaining a sense of normalcy, Melissa says, is surrounding yourself with people who care. “We are very lucky to have such a great support system,” she says. “My sister, for one, is amazing. So very encouraging. And my parents have been reassuring, and helpful in more ways than I can explain. Nick and I couldn’t do this alone. You can’t do it alone.” The notion of not going it alone is what caused Melissa to start the Tyler Philopena Foundation, a 501(c) (3) charitable organization that the Philopena’s use to help offset the cost of Tyler’s medical expenses. In August, the family will host the fourth annual Tee Off For Tyler, a charity golf event that encourages family, friends, and the general public to play 18 holes and enjoy a nice dinner, all for the sake of help. “Part of the money we gain from our fundraisers helps pay for our New York trips, which take place every six months now,” Melissa says. “We put the money to other various medical costs and therapy for Tyler, and donate to the company that runs the apartment we stay at in New York. When we have the opportunity to give back, we try as best we can.” And what about Tyler? What about the boy who suffers from a debilitating disease and, due to a diagnosis of mild autism, is unable to sit still and rest for any extended period of time? In my observation, it’s

caringvoice.org • Spring 2013, The Caregiving Issue

simplest to say that Tyler will be 4-yearsold in June, and he acts as such. He’s happy, he’s loud, he likes cartoons and he likes the funny sounds his toys make. He likes to wrestle with his dad, and be chased around by his mom. He’s a kid, and all that comes with it. “Certain things are difficult, sure,” Nick says. “He fights to get dressed in the morning, gets bored quickly while eating – things like that. But he loves a lot of things. He gets the biggest kick out of baths. He loves riding in the back of my Jeep, because it bounces up and down, things like that.” But both Nick and Melissa agree, the thing Tyler loves most is being outside. Day or night, rain or shine, if Tyler is outside, it’s as if he’s free. “If it’s freezing, pouring rain, and pitch black, he’ll beg to go outside,” Melissa says. “Doesn’t matter. He loves outdoors.” Another thing Tyler loves are airplanes. He loves watching them on TV, spotting them in the clouds – it seems as though he’s entranced by the faraway drone of the jet engines. Late in our day together, we all head to a nearby park, and in the middle of Tyler’s running, jumping, swinging and sliding, he suddenly stops and looks up. I look at him curiously, before locking eyes with Nick. “He hears a plane,” Nick tells me. I can’t hear anything yet, and I stare at the motionless Tyler inquisitively. Right as the plane comes into view, myself, Nick and Melissa finally hear it. We all watch as the plane ascends into the clouds, disappearing into the overcast sky. I look down and notice that Tyler is still staring up. Silent, with a smile. He just keeps looking. And after a brief moment, I realize that Tyler will be hearing that plane long after the rest of us.

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Tips

Care

CAREGIVING CORNER

fo r C l i m b i n g t h e C a r e g i v e r

Assertiveness Ladder

Brought to you by

The idea for the “caregiver assertiveness ladder” comes from the National Family Caregivers Association. The goal is to apply the right amount of assertiveness, at the right time, to address the behavior or words that make being a caregiver more difficult. Mild confrontation may bring about the desired changes with some people, while others may require escalating doses. Step One: Use “I” statements

Using “I” statements, tell the person who is causing you stress how you feel and what would be helpful instead. Don’t be alarmed if someone can’t easily shift his or her behavior. Some people have little awareness of the impact they have on others, and they tend to have more difficulty managing or altering their behavior. If using simple “I” statements doesn’t bring the desired result, go to the second step. Here is an example: I heard that our neighbor criticized some decisions we’d made about my husband’s treatments. Next time I saw my neighbor I said, “This is such a stressful time, with so many conflicting types of treatments. It was a long and hard decision, and it adds to our stress when others gossip or criticize the decisions we have made. We need a lot of love and support right now.”

Step Two: Share the impact their behavior has on you

Provide specific examples of the impact that their behavior has had on you. Here is an example: I told my sister that when she promises to come visit, I schedule appointments. When she doesn’t show up, I have to cancel my appointments at the last minute, and mom gets so down in the dumps that my time is spent soothing and comforting her. After I told my sister this, she never missed another visit with mom.

Step Three: Share in the now

Immediately let others know what your reaction is to their words or behavior. Here is an example: Whenever my brother helps with household repairs, he complains. I asked him to stop complaining. The next time it happened, I told him that his complaining makes dad feel like he’s a burden, and it reminds dad of all the things he can no longer do. I said that I would hire someone because I hated seeing dad feel so awful after my brother helps. My brother was upset to realize this, and he never complained again. In fact, the next time he did some minor repairs, he spent time with dad after, reminiscing about the handy work they had done together over the years.

Step Four: Speak the truth and outline consequences

Speak truthfully about the behaviors that are causing stress, being as clear and specific as possible and outlining the actions you will take if the mischief doesn’t stop. Here is an example: My brother-in-law flies into town and asserts himself into everything, giving orders and giving outsiders the impression that he is in charge. He barks orders out at me and bullies personal information from doctors and nurses at the nursing home. The last visit he ordered tests and equipment that my husband didn’t need and that I had to pay for. I talked to my brother-in-law about all of this; so has everyone else in our family. It didn’t stop until I told him that I would have no choice but to bring legal action against him if he ignored my power of attorney again.

Step Five: Disengage from the mischief-makers

If you can’t get the mischief-makers to change their stress-causing behaviors, then disengage in whatever way works best for you. After you decide you must disengage to protect yourself and ease the stress, here are some tips to disengage: • As soon as you hear the voice of the stressful person on the phone, say you are busy and hang up. • Ask someone to be the buffer between you and the stressful person. • Cut the person off when he or she offers unsolicited advice. • Don’t engage in debates. Just end the conversation. • Start reading items on your “To-Do List,” and ask for the stressful person’s help. • If you have caller ID, don’t answer when the person calls, and don’t return the call.

Here is an example: My sister was out of control, yelling at mom, arguing with everyone about everything. When mom admitted she was scared of my sister, we all agreed it was best for mom, and certainly for me, to keep my sister away. I left her a message telling her that because of her angry outbursts, she was no longer welcome. We all felt relieved. For more tips on assertive caregiving, visit liftcaregiving.com. 14

caringvoice.org • Spring 2013, The Caregiving Issue

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Care When you hit the pillow at 10 p.m. last night, you thought: I hope tomorrow will be better.

you. Let it out so you can let it go. Look for support groups in your community and online.

But, tonight, at 12:30 a.m., you think: This starting over every day is just killing me.

We often talk about the constant of caregiving – change. With change, comes its sister: starting over. Every day, you may feel like you’re starting over. You start over with different services as your caree’s health declines, as help burns out and disappears, as your caree’s abilities lessen, as your patience wears thin, as funding for the programs you use dries up. Just when you feel like you’ve made progress, a change causes you to start over. It’s like yesterday’s accomplishments and successes were simply a dream.

Really and truly embrace forgiveness. Forgiving keeps your heart free of resentment and bitterness. Forgive the disease process, forgive your caree, forgive the health care system, forgive family members who disappear. Most important, forgive yourself. You deserve it.

Take a daily temperature of your situation by asking these two questions: Do I have what I need? Does my caree have what he or she needs? Then, take note of your answers and act to make the day better anyway you can.

End the day by listing three gratitudes. Count your blessings because that’s how your

When Starting Over Seems Like a Daily Duty 10 Steps to a New Beginning By Denise M. Brown, Founder, Caregiving.com Here are 10 suggestions on how to stay positive when forced to start over.

blessings count. And, when you keep track, you keep building the blessings.

Start your day with a routine that refreshes. A Caregiving.com contributor who cares for her husband, begins her day before her husband so she can enjoy the quiet of the house. Other family caregivers start their day with a few moments to write in their journal. Others start their day with prayer or meditation or devotion. Create a ritual that’s just right for you, something that helps you find and keep your perspective.

Practice your faith, whatever your faith may be. Faith in a Higher Power who has called you to a Greater Good adds meaning to an experience that spurs more questions than answers.

Enjoy the humor in the day. It’s funny. When it is, laugh. When you laugh, you show appreciation for an incredible gift we’re given: A sense of humor. Exercise it.

10.

Live in the present. Fretting about the past and worrying about the future takes you out of what you can control: Today. Take one day at time, focusing on today’s needs, planting seeds for tomorrow’s. Express frustrations to a comforting support system. Caregiving can be lonely, but it’s awful when you feel you must go it alone. Vent to a comforting support system that does not judge

caringvoice.org • Spring 2013, The Caregiving Issue

Keep in mind: This too shall pass. It can seem like loss and darkness has settled in your home permanently. They may overstay their welcome, but they will be replaced by growth and light. They will. Believe in yourself. It keeps everyone else believing. And, on those days when you just can’t believe all that’s happened or believe in your ability to manage it, know we believe in you. And, we don’t ever stop.

Do I Need a Power of Attorney?

Care

By Kristin A. M. Lough

A question CVC’s legal department is often asked is whether or not patients need a Power of Attorney (POA). But before I can answer that, I’d like you to understand what a POA is and whether one is appropriate for you.

What is a Power of Attorney? A Power of Attorney is an agreement between two people: a principal and an agent. The principal, or almost always the patient, grants powers to the agent, or the caregiver, to make certain decisions on the patient’s behalf. These decisions can be based upon a range of issues, but they are typically financial or medical decisions. A POA steps in when the patient is no longer able to make decisions on his or her own behalf, and it allows the caregiver to designate who will make those decisions. Without a POA, a court or state may be able to designate someone to make decisions on the patient’s behalf. The person appointed might not be the person the patient would choose to make his decisions. As an example, married couple John and Peggy choose to draft durable Powers of Attorney granting one another the authority to make financial and health care decisions on one another’s behalf. John discovers that he is diagnosed with Huntington’s Disease and eventually loses capacity to make decisions on his own. Because of the POA, Peggy can make decisions for John. Without that POA, their home state of Idaho could determine that Peggy is not the best person to make those decisions and instead designate John’s cousin, Nell, to make those decisions.

Do I need a Power of Attorney? Probably. Most people who own property or have any money will need to make financial decisions, or difficult health care decisions later in life. If this is the case for you, you may want to consider having a POA in place.

The Specifics When you draft a Power of Attorney, you must have the capacity to do so. Capacity is essentially the ability to

LEGAL CORNER

CVC Health Care Attorney Kristin Lough uses her background in finance and the law to help CVC patients. As part of the Appeals and Disability team, Kristin helps assist patients with insurance appeals and with applying for Social Security Disability.

make or enter into a legal relationship the same way someone with a sound mind would. Everyone is assumed to have a sound mind and be of normal intelligence. Someone can try to prove that you no longer have capacity. However, to do that, they must have specific and realistic proof. So, if your illness is expected to progress in a way that may cause you to lose capacity, it is better to draft a POA sooner rather than later. You can speak to an attorney about tactics like videotaping the signing, getting one or many doctors’ statements of your competence, and/or having multiple witnesses at the signing of your POA to further support your capacity. A POA must be durable to last after a patient loses his capacity. A durable POA will remain intact after the patient is no longer able to enter into legal relationships. A POA will terminate at death, even if it is durable. The laws that govern Powers of Attorney vary state by state. Many people will need separate POAs for health and financial issues. Consult an attorney in your state to answer any specific questions you have and to draft a POA for you. If this is not financially possible for you, many state Departments of Health have free Medical Powers of Attorney or Health Care Proxies available through their offices. Contact your local Department of Health to request a copy of their form and for any specific instructions to complete. If your family does draft a Power of Attorney, please send a copy to CVC. We can keep it on file in case the caregiver must sign on behalf of the patient when completing a new Terms and Conditions form or the incredibly important Renewal to receive a grant in the new year.

Want your legal questions answered? Send your questions to magazine@caringvoice.org and we’ll answer them for you in this column.

Care with Kim Buckner Kim Buckner’s family struggle with pulmonary fibrosis isn’t an easy story to take. It’s an unflinching and devastating exposé of how one disease can plague a family. The staff of Community magazine prides themselves on sharing encouraging and positive articles with our readers. But, occasionally, it’s necessary to convey the other side of the story. Kim Buckner’s story may shake you, but my only hope is that it moves you as much as it moved me. – A. Withrow

y mother, Clara, first had issues with pulmonary fibrosis in December 2008. She was 69 years old. We had been Christmas shopping, and she was complaining of being tired, and having shortness of breath. And I sort of wrote it off as her maybe having gained a little weight. On Christmas night of that year, she had an attack where she couldn’t breathe. The next morning, my father took her to the emergency room, they ran a bunch of tests and said they couldn’t find anything wrong. That Monday, she went to her general practitioner, they did an EKG and referred her to a cardiologist. After talking with the cardiologist, my mother was put on a treadmill and couldn’t last more than three minutes. She couldn’t breathe at all. It was the cardiologist who diagnosed her with pulmonary fibrosis. She was put on oxygen, referred to a pulmonologist and in January 2009, underwent a lung biopsy. From the biopsy, they determined she couldn’t be treated with steroids, and her only option was a lung transplant. My mother has had a history of troubles with several medications, and we figured a lung transplant wouldn’t work for her. Now, at the same time my mom was first being diagnosed, my grandmother, Alice, became sick as well. My grandmother was hospitalized for high blood pressure at the same time my mom was having her lung biopsy. By September 2009, my grandmother still hadn’t gotten better, and she was eventually diagnosed with PF. A year later, my grandmother passed away from the disease. She was 87. Shortly after, my uncle was diagnosed with PF. And just this past year, my mother died from PF. The cycle of this disease has been fast and fatal for my family. It all happened so quickly. Before my mother got PF, I had never heard of it. I learned that it is a rare disease, but a common one.

Kim Buckner (left) with grandmother Alice “Muddy” Rosier (seated) and mother Clara Cosahan

I was very very close to my grandmother. My husband and I moved in with her for the last year of her life. She had a fear of being left alone, so we made sure there was always someone by her side. My mother would come sit with her, my uncle would sit with her; we always made sure someone was there. It was tough at times, but we made it work. And one night, my grandmother went to sleep, and she didn’t wake up. It was sad, but it was very peaceful for her. My mother’s experience, however, was not. My mother was tired. She was tired of fighting, of not being able to breathe. And I prayed that she would be able to go to sleep one day and leave peacefully, but that’s not what happened. Her pain medicine didn’t work very well for her, and she struggled. After a while, it was made clear to us by medical professionals that the only way she was going to go was if we turned off her oxygen. My family discussed it, and after having seen her struggle like she was, I made up my mind that that was it. It was a minute. She was gone about a minute after we turned her oxygen off. Other members of my family and I have discussed getting the genetic test to determine if we have PF. But we’ve chosen not to do it. None of us want to know if we’re going to have this. It’s a difficult decision to make, but this is what I choose. My faith is what gets me through. I have very strong faith, and it has helped me through these past few years. It also helped that my mother had preplanned her funeral – she wanted to make sure everything was in order. She was ready to go. It’s hard sometimes because my mother and my grandmother and I were all best friends. But I try to not let myself get in that depressed state. I find it’s important to hang onto something that gives you positivity. For me, it’s my faith.

Want to share your story with CVC? Email magazine@caringvoice.org for more information on how to see your words in this magazine.

caringvoice.org • Spring 2013, The Caregiving Issue

Care

Photo by Matt Spaulding

Catching Up with the R.E.M. Runner

On My Own, Together Learning to reach out to others for support By Julie Flygare

iagnosed with narcolepsy in my midtwenties, the concept of a “caregiver” scared me deeply. I didn’t want to be a burden to anyone. Like most twentysomethings, independence was deeply important to me. I had recently moved away from home, chosen an ambitious career path, and planned to survive and thrive on my own.

Narcolepsy was clearly not in those grand plans. Nevertheless, when faced with narcolepsy, I was determined to take on the serious medications and life-style changes the best I could on my own. At the time, I equated accepting help with weakness. Relying on someone would’ve meant that I’d given up on myself and let my illness win. My stubborn determination didn’t make me healthy again, but it satisfied my big ego, at least for a while. Five years later, I’ve come a long way. Here’s what I learned:

1 . Support starts within: Oddly, many people are really good at seeing the worst in themselves. I had to learn to muffle my negative self-talk and treat myself like I treat others. When is the last time I told a dear friend, “You’re a terrible person for skipping your workout today”? Never – because that would be ridiculous. I deserve the same compassion, and it must start within. 2. Finding support: Newly diagnosed with narcolepsy, some of the people closest to me were not offering care. Sadly, they didn’t seem to understand or empathize, no matter how hard I tried to explain. The disconnect was disheartening and isolating. With time, I made friends who did “get it” and believed I was amazing for overcoming adversity. I quickly gravitated toward these new friendships.

3. Learning to lean on others: When these new supportive friends offered care, my gut response was still to say, “No! Reject!” But with time, I realized that accepting care did not mean I was weak or disabled. Instead, being honest with my needs and letting people help me was smart and strategic – working with everything I had, my advantages and disadvantages, to create my best life. 4 . Creating a personal Board of Directors: Chronic illness can feel as overwhelming as running a Fortune 500 company. This past year, I created a personal Board of Directors, a.k.a. “Team Julie,” listing eight people who know me from different aspects of my life. We don’t hold formal meetings or conference calls, but these are my goto friends on speed dial when I need advice, assistance or a shoulder to cry on. In my twenties, I didn’t have any one person as my main pillar of support. First, I had to learn to care for myself, and eventually, to accept care from others. “Team Julie” may be an unconventional version of caregiving, but we’ve made it through the darkest of days. And now that I can accept care, I am more restored and better able to be there for my loved ones. With time, I imagine we all lean on each other. As Leonardo da Vinci once said, “An arch consists of two weaknesses, which, leaning on each other, become a strength.” Julie Flygare is a leading narcolepsy spokesperson and the published author of “Wide Awake and Dreaming: A Memoir of Narcolepsy.” Her story has been featured by Marie Claire Magazine, ABC News, NBC News, Psychology Today and the Discovery Channel. www.julieflygare.com 19

Care

DIGITAL SUPPORT The importance of finding support for chronic health concerns through social media In today’s world, the ever-increasing need for technology and immediate information has dramatically changed the landscape of managing one’s health. In a report published in January 2013 by the Pew Internet & American Life Project, 72 percent of American Internet users have gone online to look for some kind of health information in the past year. The report also found that women are more likely than men to head to cyberspace to investigate potential health issues. Frequently, people start looking for more information with a search through Google, Bing or Wikipedia. Beyond searching for a diagnosis or information about a specific disease, people also have turned to the Web for support. Niche communities that focus on an array of health issues, such as HealthCentral, Patients Like Me, Inspire or Treatment Diaries, invite individuals to share their personal stories about living with chronic illnesses. For many, social media, especially places like Facebook, have turned into a place for support and comfort. The web offers a virtual support system for many people, battling both common and rare conditions. Scleroderma is a relatively unknown disease that affects approximately 300,000 Americans. Most general practitioners will never see a patient affected by the disease. The same is true in far too many instances of people living with scleroderma. In my role at the Scleroderma Foundation, I increase connections of people living with the disease and help them better

caringvoice.org • Spring 2013, The Caregiving Issue

By Christina Relacion, MA, Communications Manager, Scleroderma Foundation

access the essential resources they need so they can be a more involved member of their care team. In two years, our Facebook community has tripled in size to more than 10,750 users – the largest and most active of its kind among similar scleroderma organizations. In addition, many of our 24 chapters and 150 support groups across the country manage their own social networking communities, further engaging the scleroderma community. I attribute the Scleroderma Foundation’s online successes to several factors. First, patients are becoming more active participants in their treatment plans, and secondly, online tools like Facebook offer an improved access to health information. “I initially reached out to online resources when I recognized that no one in my world ‘got it,’” said Teri H., a registered nurse from Texas who has lupus and scleroderma. Teri said she joined our social community because, “I have felt I was in desperate situations with these illnesses in the last couple of years and I found great comfort in being able to read others’ posts as well as be able to share on different websites.” There are many instances where people are unable to attend a support group in their own town. A disease like scleroderma can limit one’s mobility. The psychological effects of the disease also make it hard for some to go out in public. A virtual support group offers a unique opportunity to connect with others in an intimate and personal manner.

“Social media is like a huge support group. You may not have the intimacy of being in a small group but… I have actually become friends with people who have scleroderma and are from other countries,” said Helene G., who runs a scleroderma support group in San Diego and belongs to the Foundation’s Facebook community.

Working closely with our Programs and Services team, we review journal entries and discussion posts. The message board’s posts help us generate content for our publications and our annual patient education conference. It steers us toward what issues people are currently experiencing and ensures that we have a pulse on common concerns.

When Lora K. was first diagnosed with scleroderma, she and her husband initially turned to medical professionals for support. She was surprised at what happened.

In the coming years, the trend of people turning to the web for health information will continue to grow. As access to mobile devices becomes easier and less cost-prohibitive, online communities will see membership numbers surge. I predict that more medical professionals will take part in online discussions as their comfort levels and confidence increase, as well. This will help change the dynamic in the benchside setting, causing doctors and patients to be engaged members in one’s care plan.

“To our shock and grave disappointment, we discovered they offered no help,” Lora said. “To our continued amazement, they offered no information. Not even a suggestion as to where we might find information,” she said. “We had no choice but to seek help and information on our own.” Teri, Helene and Lora’s stories are just the beginning of how some people living with scleroderma – along with their caregivers, friends and family members – have gone online to empower themselves with information. In May 2009, we began a partnership with Inspire. With their help, our global online discussion board has grown from 2,300 users in 2010, to more than 6,700 users in 2012. Last year, there were 2,877 discussions started with nearly 30,000 replies from discussion board members.

Christina Relacion is the Communications Manager at the Scleroderma Foundation’s National Office, located in metro Boston. Her primary interests include website production and social media. Her work has been recognized by the Wisconsin Healthcare Public Relations and Marketing Society, the Association of Marketing and Communications Professionals and other professional organizations. Christina has presented across the country on topics including social media, public relations and website management.

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A Caregiver’s

TOOLKIT

SUPPORT GROUP

The biggest benefit of a support group is the chance to talk with people who truly understand what you’re going through—because they are experiencing it, too. Support groups also give you a chance to share your experiences, by telling your story, providing suggestions on daily living and coping, along with providing an outlet for fighting back in your disease community.

CARE TEAM

Establish a go-to team of trustworthy and reliable individuals that you can call for help, or simply to be there when you need to talk with someone you trust.

Support can come in many forms. Here are a few methods in which you can find support and, in turn, lend it to others. JOURNAL

An effective tool for documenting medication schedules and health conditions, along with having an outlet to express one's feelings and thoughts.

YOGA

Care

Yoga has been shown to help relieve diseases such as chronic back pain, diabetes, fatigue, and stress. Regular Yoga practice also helps develop and maintain the physical and emotional well being of a person.

A new study conducted by Sports Marketing Surveys USA and Yoga Journal

claims 20.4 million Americans currently practice Yoga

This yoga position is called Half Lord of the Fishes.

Westernized yoga classes focus on learning physical

poses called asanas.

ONLINE TOOLS

Websites can provide 24-7/365 access to important information. We recommend any of the websites below. â&#x20AC;˘ Family Ties, by Lift Caregiving https://familyties.secure.force.com A free care management tool that helps you safely store important documents, schedule caregiving activities and keeping family updated. â&#x20AC;˘ Caringbridge www.caringbridge.org A free care management tool that helps you safely store important documents, schedule caregiving activities and keep your family updated.

FACEBOOK The power of social media, especially Facebook, has grown into the ability for people from all over the world to network and be engaged in online discussions while sharing ideas, tips and caregiving advice.

Total number of Facebook users worldwide 1.2 Billion 23

Care

How two parents continually strive to maintain a sense of normalcy for their chronically ill daughter By Alex Withrow

osh Castlebury is searching through old pictures on his iPhone, gently sliding his finger across the screen, flipping back in time to the moments when his daughter wasn’t sick. Moments when his girl, Carter, would run up to him, jump in his lap and offer up a kiss. Moments when she could play with friends without the need of feeding tubes and suction devices. Moments before everything changed. “I used to look at these pictures and cry,” Josh says. “Looking at them now, I can tell you that I’ve cried it all out. Sometimes I feel like I want to cry, like it might do me some good. But I can’t. There’s no more sadness when I look at these. I see a smiling little girl, happy as can be, and I’m happy for her. The way I like to picture it is that Carter’s illness is a lesson. A lesson I’ve learned, and am still learning. And that’s not something to be sad about. It’s something to embrace.” The first two years of Carter Castlebury’s life were perfect. She was a blonde haired, plump little girl who enjoyed pool parties, big smiles and warm hugs. She had parents who loved her, grandparents who adored her, and friends who laughed with her. It took two years of tender parenting to raise Carter into a young free spirit, and it took two days to take that all away. One day roughly six months ago, Josh went to work and carried out his day, business as usual. While driving home that evening, his girlfriend, Brittany, called to tell him that their daughter, Carter, couldn’t lift her arms. Soon after Josh arrived home to see Carter’s condition, they rushed her to the hospital, fearing the unexpected. “We had no idea what was happening,” Josh says. “And when we arrived at the hospital, we realized quickly that the doctors didn’t either. We were told to transfer Carter to a different facility with better pediatric resources. We arrived

Care there and stayed the night, hoping and praying that everything was going to be all right.” The next morning, Carter’s health had seriously deteriorated. Essentially, over the course of a single night, Carter’s body had been taken over by an unknown disease. She was paralyzed from the neck down, and, much to the horror of her parents, utterly helpless. From there, Josh says, everything went downhill quickly. The details of those next few days are a blur to him. What he’s left with is 48 hours meshed together, creating a muddled memory of how his daughter’s life was forever altered. “At that point, she didn’t even look like Carter,” he says. “Her body was swollen, she was intubated with oxygen, hooked up to tubes – it was a bad moment for us.” An MRI quickly deduced that Carter’s spine was swollen, and she was transferred to another facility, where they definitively diagnosed her with transverse myelitis. According to the National Institutes of Health, transverse myelitis is a neurological disorder caused by inflammation of the spinal cord. The cause of the disease is unknown, and anyone of any age, race, or gender can incur the disease. The illness can produce symptoms as common as muscle weakness, and as severe as paralysis. “They think Carter caught a virus the week before she got sick, and instead of her immune system trying to fight off that virus, her immune system attacked itself, which made the majority of her spinal cord swell,” Josh says. Carter was diagnosed one week after her second birthday, an event that was celebrated similarly to most things in Carter’s life – with her laughing and carrying on in perfect health. In fact, Josh says that before her diagnosis, Carter was 100 percent healthy. Always. There were no complications during Brittany’s pregnancy, no difficulties in labor. Carter, Josh explains, was his world. And since

his two-day blur, nothing has been the same. Today, Josh is sitting in his mother’s house in Central Virginia, where he currently lives. He’s waiting for Brittany to bring Carter over from Brittany’s parents’ nearby home, where she currently resides. Both parents are currently out of work, but Josh is optimistic about his employment prospects. The two are saving to buy a house, and plan to wed this summer, shortly before Brittany gives birth to their second child. But all that comes later. For now, I’ve tasked Josh with explaining to me what it means to have your life turned upside down in an instant. To realizing that matters beyond your control have forever distorted your once-lived version of the American dream – the dream of having a devoted partner, healthy child, steady job, and so on. “I could sit here and talk for days about how things have changed,” he says. “I wouldn’t say you ever really get used to it. You just learn how to be the best caregiver you can be. Brittany and I had to learn to schedule our lives around Carter. And if that’s what it takes, then that’s what it takes.” Equipped with a built frame and a soft voice, it initially appears that Josh, who will turn 25 this year, is timid about discussing the complexities and negativities surrounding his daughter’s health. But that’s just surface. In fact, he’s an open book on all matters relating to his daughter. He’s amicable when discussing the difficult times, and ecstatic when talking about the joyful times. I ask him to describe the continual learning curve that shifts good to bad, and uninformed to well-versed. How does one handle being introduced to feeding tubes, suction devices, safety harnesses, ceaseless medical bills, and so on? As Josh tells it, he can’t conclusively learn anything related to Carter’s health, but rather, he has to keep adjusting to the curve, and learning as he goes.

CONTINUED ON PAGE 26

Care

Carter reading a story with her mother, Brittany

“Here’s the best way I can explain it,” he says. “I played football for a long time. I loved the sport, I loved the repetition. The first day of practice, you go to the field and learn one play. You run the play again and again and again. The second day of practice, you learn another play, but before you run that new play, you practice the play you learned from day one. The third day, another new play, but you run the first two plays first. By the end of the season, you’re wondering how you learned 30 plays. It’s the same thing here. Either Brittany or I are by Carter’s side for her every waking moment. We went to the doctor’s appointments and watched nurses work on her. And after a while, we learned how to do it. We pinpointed the best techniques of all of the different nurses, and we made those combined techniques our process.

sure you’re there. I want my daughter to receive the best care possible, and if I’m one of her primary caregivers, I need to be the best caregiver I can be.”

“Things always change – new treatments, new medications, new therapies. So you learn. You teach yourself, and you make

“We can’t just up and go to the mall anymore. We have to know exactly where we want to go, what we want to do, and

Part of being a great caregiver is adapting to change. The weather was nice yesterday, and Josh says a lot of people around his neighborhood were outside, washing their cars and enjoying the outdoors. He wanted to take Carter outside, but he knew he couldn’t just take Carter outside. “It isn’t that easy,” he explains. “That’s not to say I wouldn’t have taken her outside – I’ll do anything and everything for her – but there’s a lot more thought that goes into those little things. Going outside isn’t going outside anymore, there is preparation, planning – we always have to think ahead.

caringvoice.org • Spring 2013, The Caregiving Issue

how long it’s going to take. We have to think in depth, before we leave the house, to make sure we’re not going to be caught short. We need all of her equipment – the charger for her feeding pump, the charger for her suction, making sure we have enough suction – it’s things like that we have to realize beforehand.” Soon after Josh explains this, Brittany arrives with Carter and a few things quickly become clear. First is the way Josh lights up when Carter is in the room. Kind and soft spoken when we were alone, once Carter is around, he’s a playful dad who makes silly noises, carefully tickles his daughter, and speaks an octave or two higher. His excitement to be in Carter’s presence is palpable. At 23, Brittany Ogle is more outspoken than Josh, but no less kind. Sporting a small but evident baby bump, Brittany is quick to back up most everything Josh can recall from what he’s told me so far in our interview, but not hesitant to add her own insight.

Care

Josh and Brittany help Carter through one of her daily treatments

Carter Castlebury, December 2012

“We were encouraged by nurses, doctors, and a few others to get an at-home nurse for Carter,” Brittany says “They said that even if it was someone who can sit and watch her while we run to the store, it would be a big help. But I don’t want to do that. I want her to grow up around her parents and have as normal a life as she can from this situation. Just because it takes us an extra 15 minutes to get her into the car, that doesn’t mean she can’t come with us. No, you can’t just get up and go. You have to put a lot of thought into it. Adjustments need to be made, but we’re determined to not have her miss out on life.”

against his chest. As we view these videos, it’s obvious that Josh gets just as much enjoyment out of rewatching them as he did in actually performing the acts that were filmed.

When I meet Carter, I’m primarily taken by her intelligence. She’s two and half years old, but acts twice that. If not more. She’s quick to point out what show she wants to watch on TV, what time she wants to take a nap, how long she wants her bath to be, and so on. As her father puts it, Carter is very aware of what’s going on around her. She knows, for instance, that although parts of her treatment are going to be uncomfortable, they are necessary for her everyday development. “Everything from her neck up is fine, so she’s definitely able to express her emotions and tell us how she feels,” Josh says. “Part of her intelligence comes from the fact that she’s not sidetracked by anything else. She can’t get up and

run around and be distracted. Her brain is perfectly okay, and she maximizes on that. That’s the part of her body she gets to exercise the most. She’s very composed, she’s very aware, and she’s very mature.” Josh and Brittany admit they’re facing a tough time. They’re both out of work and living with their parents, with a sick child to care for and a newborn on the way. But Josh says he’s not worried. His family has been through worse, and they’ll make it through this. “Carter needs a best friend,” he says. “And that’s part of what we hope our new baby will be. Carter needs someone she can grow up and play with. Someone who will love her and always be here for her.” “We’re staying with our parents right now because we didn’t want to rush into renting,” Brittany says. “We’re saving to buy a home, and soon, we’ll all be together.”

“I want to see that,” Carter says from the floor. Josh rushes down and lies next to her, replaying the videos, much to Carter’s enjoyment. “You appreciate things,” Josh says after a few minutes. “You appreciate the time we had together when she wasn’t sick. You appreciate those moments, and you remember them. But you also appreciate every smile she gives now. Every laugh and every little movement. You know that feeling of total happiness? That feeling of being completely happy? Some people pay a lot of money to get that feeling. Now all’s I have to do is pick Carter up and run her around the house like she’s an airplane, and I’m the happiest I can be. She loves it, and I love it. That’s my definition of happiness.”

As our interview nears its end, Josh gets his phone out and shows me some recent videos of Carter. Instead of going back in time, he stays in the present. He shows me how he flies Carter through the air like a human airplane, swiftly gliding her up and down the hallways, weaving her in and out of rooms. He shows me how he dances with Carter to Alicia Keys’ “Girl on Fire” with Carter pressed tightly 27

with Mike Dermer ou don’t know what the person next to you might be going through. I’ve seen this happen before, where people think, “Oh, this person is being rude.” But no, they’re not being rude, it’s that they have physical issues they’re trying to deal with. It can be difficult to gauge what you can do.

I was pushing myself really hard. I was very busy at work – traveling a lot, managing 50 consultants, working extremely long days. At the peak of all that hard work was when I got sick. I got a cold, and that’s all it was. When you get a cold, your body produces antibodies to fight the cold. Problem was, my body never stopped producing those antibodies. So those antibodies were constantly attacking the myelin sheath around my nerves. I had no idea what was going on. Soon after, I was walking my dogs and felt a strange sensation in my foot. It just didn’t feel right. A few days later, it was in both feet. I went to the doctor, he didn’t know what it is, and he said to wait and see what happens. A few more days went by, and my hands developed the same feeling. Basically, I was losing sensation in those parts of my body very slowly. I started to not be able to feel anything in my hands or feet. I was fighting it best I could, but I was going numb. And I didn’t know what to do. After a few months, I had to stop working, because the pain was so severe. I was losing my balance at work, over exerting myself – it was just too much. Soon after that, I attended my first peripheral neuropathy support group and a doctor at that meeting spoke about chronic inflammatory demyelinating polyneuropathy (CIPD), which is what I ended up being diagnosed with. I approached the doctor, and she told me to call her office that Monday, and she’d be able to see me. I called on Monday, was seen on Tuesday, and began receiving treatment shortly thereafter. At that point, I could not hold anything in my hands – a fork, a pen, I couldn’t type – nothing. I had no feeling in my feet so I could barely walk; if I turned, I would fall. I had lost all of those fine motor skills, so things took me longer. I had to use my eyes because I couldn’t always feel what I was doing. But with the medication treatments and rehab, I started to be able to get by, so I went back to work. September 11. 9/11 happened and I was sent to New York City to help establish a disaster recovery sight for 28

caringvoice.org • Spring 2013, The Caregiving Issue

an investment-banking firm. I was there from OctoberDecember of 2001. I was put-up in an apartment that overlooked Ground Zero. My office was 15 blocks away, and because there were no cabs, and the subway wasn’t running, I had to walk it twice a day, everyday. My feet were feeling it, I was feeling it, and when I returned back home, I was put back in the hospital. Living in a very recent post9/11 New York was… it was surreal. You experience things like that, and it’s life changing. One day I was walking near Ground Zero and I turned a corner, and I see these bears. Thousands of teddy bears on the sidewalk. Piled up with notes of well wishes. It was just one of those things. And it put a lot of things into perspective. I have not been hospitalized since that time in New York. My medication dosage was increased, and I’ve done a lot better. My health slides at times, and it’s about finding that balance of medications. In fact, most of my drug therapies I take are to help counteract the side effects of other medications. Now, parts of my body are hyper sensitive. If I step on a tack, the pain is equivalent to if I step on a pebble. That’s no exaggeration, my body cannot tell the difference. I’m not supposed to walk long distances. If I push myself too hard in an afternoon, then I can potentially ruin my next two weeks. So I have to take it slow and easy all the time. It’s best to go slow to avoid the roller coaster. I get better throughout the day. I have to start the days very slowly, but as the day wears on, my health actually improves. So by the time people are ready to wind down and end their work day, I’m firing away and getting a lot done. So as the day progresses, I actually get stronger. It’s funny how that works.

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Patient Association Profile:

Coalition for Pulmonary Fibrosis By Alex Withrow

Before a patient association is instituted, it’s not uncommon for a specific patient demographic to go unnoticed. But they’re there. They’re alive and ill and struggling. The Coalition for Pulmonary Fibrosis (CPF) was formed to address the needs of one such group. “In the years before CPF started, there was an opinion shared around the country that there were no publicly available support resources for anybody dealing with pulmonary fibrosis,” says Coalition for Pulmonary Fibrosis CEO Mishka Michon. “The people who were initially involved in putting CPF together had all been impacted by the disease. And they were stunned when they went looking for information and resources, outside of their physician, they could find nothing. Creating a patient organization was seen as the best way to address patient and caregiver needs.”

“In 2008, CPF’s vice president, Teresa Barnes, and I went to Washington, D.C. to explore new avenues for partnership with Congress,” Michon says. “We met with Brian Baird, a congressman from Washington State, whose father, a PF patient, died in his arms. We talked to him about options for building a case around PF and the agreement was that a national patient registry would be a critical first step in furthering research.”

For the first few years of CPF’s existence, Michon says the organization was based on the notion of providing as much as they could for patients. Support groups were started, information was made readily available online, brochures were created, and so on. In addition, Michon says the CPF staff reached out to physicians across the country, requesting they alert pulmonary fibrosis (PF) patients to the resources available at the CPF. After creating informational and support resources, the CPF sought to expand its role by taking on the challenge of advocating for patient needs and more directly supporting efforts to find a cure. “We asked ourselves, ‘What can we do to increase awareness of this fatal disease? What can we do to make people understand the urgency and tragic nature of PF?’ Getting the public engaged can be a big challenge, but it was a necessary one.” The CPF began a dialogue with Congress in order to engage national leaders to help fight PF. In the first successful bid for federal attention, the CPF partnered with Rep. Charlie Norwood, a congressman from Georgia who had PF, to introduce the first Congressional bill around the disease, which was unanimously passed in. Norwood died from PF in 2007, and Michon says his work helped make many of his colleagues aware of the seriousness of PF, leading to the House of Representatives unanimous passage of a resolution to bring attention to PF.

caringvoice.org • Spring 2013, The Caregiving Issue

Baird’s work led to the Pulmonary Fibrosis Research Enhancement Act, which he introduced in the 111th Congress, continued in the 112th, and may be reintroduced this year. “We’ve expanded into a very strong advocacy organization,” Michon says. “We work with government health entities and continue to expand our partnerships where we can. We still serve patients every day through our support groups, and in 2012, we partnered with volunteers across the country as they hosted walks to promote awareness. Part of our mission is to educate the public about the random nature of the disease. It’s important that people realize that anyone can get it, and that is a tough message to bring home.” Working to reach its goals, the CPF does so with a relatively small staff who share a desire to bring a more promising future to those diagnosed with PF.

Above: Mishka Michon, Chief Executive Officer of the Coalition for Pulmonary Fibrosis speaks during the 2nd Annual Violet Rippy 5K. Left: Runners and walkers prepare to start the race.

“It’s a lot of work, sure,” Michon says. “We can often work 60 hours a week, taking patient calls during the day, and saving our evenings for writing newsletters, conducting advocacy research – there’s always more information to get out there.” And while Michon is proud of the work her staff is able to accomplish, the challenge of accessing funding for a relatively unknown disease means an ongoing effort to garner support. It helps that the CPF’s Honorary Board reads like an A-list call sheet, with noted news anchors, night show hosts, and film actors, all willing to lend their support for PF awareness. “Many people we reach out to are generous in lending their names to the cause,” Michon says of her celebrity For more information visit www.coalitionforpf.org

endorsers. “The task after that is to get them even more engaged in the fight.” One celebrity who has lent more than her name is actress Rose McGowan, perhaps best known for her work on the television show, Charmed. McGowan lost her father to PF, and has since been vocal in increasing awareness about PF, and doing her part to help finding a cure. “Rose was traumatized by the loss of her dad, and when I reached out to her, she was delighted that she could do something for the disease,” Michon says. “It was very important to her. She was wonderfully receptive to the idea that she could contribute to making a change. With individuals like Rose on our side, we will one day succeed in taking PF from a mysterious fatal disease to one we can cure.”

Newsmaker

Dr. Daniel Rose, M.D.

Chief Executive Officer and Chairman of the Board of Directors, Pulmonary Fibrosis Foundation Interview by Alex Withrow

Dr. Daniel Rose has been around pulmonary fibrosis (PF) for a large part of his life. After his aunt passed away from the disease, Dr. Rose’s father, Albert Rose, and uncle, Michael Rosenzweig, both PF patients, started the Pulmonary Fibrosis Foundation (PFF) in 2000. Since that time, Dr. Rose has lost both his father and uncle to the disease, and assumed the position of President and CEO of PFF. Here, he speaks with Community magazine about the personal experience he brings to the Pulmonary Fibrosis Foundation, and why he thinks a cure may be on the horizon. Pulmonary fibrosis is very close to you. How does this disease affecting you personally, influence the work you do professionally? My aunt died of the disease, my father was diagnosed in 1998, and my uncle was diagnosed in 1999. At that time, I had practiced heart surgery for about 20 years, and prior to my aunt getting diagnosed with pulmonary fibrosis,

interesting: idiopathic pulmonary fibrosis impacts anywhere from 150,000-200,000 people. Cystic fibrosis (CF) impacts 20,000-30,000 people, but almost everyone has heard of cystic fibrosis. The CF Foundation has done an incredible job in raising public awareness and also in improving the quality of life of CF patients. For the first 25 years of the Cystic Fibrosis Foundation’s existence, they were like a lot of foundations – they

now, the only real option we have “ Right for this disease is lung transplantation, and

that’s really improved in the past few years.”

I honestly hadn’t thought about the disease too much. When my father and uncle started the Foundation, I became Chairman of the Board and I learned a lot about the disease. When my uncle stepped down as President due to his deteriorating health, I took over. So yes, this disease is personally very close to me, and that’s a large part of what motivates me. Has anything specifically influenced your role as President of the PFF? We’ve really tried to model ourselves after the Cystic Fibrosis Foundation. It’s

raised a lot of money but didn’t have a significant impact on the disease. Their Board of Directors got together, acknowledged that they hadn’t made much of an impact, and elected to change some things. Since then, that Foundation has done things in a very thoughtful and strategic kind of way. That’s who we try to model ourselves after. What are the main overall goals of the Pulmonary Fibrosis Foundation? Our main goal is to help find successful treatments for this disease. The pillars of our mission in addition to finding a cure, include patient advocacy, increasing

caringvoice.org • Spring 2013, The Caregiving Issue

disease awareness, and providing patient education and support services. This disease is very under appreciated, and increasing awareness can help change that. How does the PFF go about increasing awareness about the disease? We’re doing a number of things on an advocacy level. We need to make sure that, with everything going on in Congress, there’s enough funding for medical research. So we work with a number of advocacy groups along those lines, all in hopes of increasing research funding and raising awareness. In addition, we try to provide a lot of educational resources for our patients. We’ve updated our handbook, and we’re also very active in working with the medical centers to provide support group services for patients. Last fall at a conference in Italy, we ran a workshop on patient support groups. So we’re also beginning to help develop international support programs. There’s an international conference in Barcelona this fall called the European Respiratory Society Annual Congress, and we’re excited to be able participate in that. Currently, there is no FDA-approved drug for pulmonary fibrosis. Do you anticipate a cure for this disease? Right now, the only real option we have for this disease is lung transplantation, and that’s really improved in the past few

Above: Patients at the PFF’s Summit in December of 2011. Left: Dr. Rose and Dr. Karen Schwartz, daughter of PFF co-founder Dr. Michael Rosenzweig, at the Breathe Benefit 2012 annual dinner.

years. If you look at the history of other organ transplants there was a learning curve. The first organ that became commonplace to transplant was the kidney, and this was followed by the heart and the liver. Initially heart and liver transplants were nearly abandoned because the results were so poor. As the individuals who performed these operations gained more experience, and the transplant team gained more experience, and the therapy to treat the rejection improved, then the outcomes ultimately improved. So that’s what’s happening with lung transplants now. The teams are becoming a lot more experienced, and the methods to treat rejection are improving. So, basically, the results of lung transplants are a lot better now. There are a number of drugs now in different phases of clinical trials. Many of those drugs appear to be promising. What may

be most needed, though, is multi-drug therapy. You have to attack the disease through a number of different pathways, and that’s what we probably need to do with pulmonary fibrosis. Unfortunately this doesn’t necessarily help the people who have the disease now, but I truly think that in five to 10 years, we’re going to have some very effective therapies. The Pulmonary Fibrosis Foundation is now in the process of creating a Care Center Network and a registry where we can begin to standardize treatment. We’ve also had discussions with a few pharmaceutical companies to see if we can develop collaborative relationships with the academic research centers to expedite drug development. We need to speed up drug development and try to make it more cost effective. That’s a major goal of our organization.

AMERICAN LUNG STATISTICS for the UNITED STATES

AS OF FEBRUARY 22, 2013

Waiting List Candidates

1,665

Transplants January — December 2012

1,622

Donors January — December 2012

1,584

SOURCE: Health Resourc es and Ser vic es Administration, U.S. Depar tment of Health & Human Ser vic es

How will

you

remember

Caring Voice Coalition? Charitable giving begins at anytime in oneâ&#x20AC;&#x2122;s life. Consider where your assets go and include Caring Voice Coalition in your estate planning. Contributions, including gifts and monies, help to ensure that CVC continues to provide financial assistance and additional resources to aid in the journey of our patients. We can help you explore a variety of possibilities for making a significant gift to Caring Voice Coalition. Simply contact Rebecca App, Director of Finance, at 888-267-1440, ext. 106 or finance@caringvoice.org.

Newsmaker

Rino Aldrighetti

President and CEO, Pulmonary Hypertension Association Interview by Alex Withrow

Rino Aldrighetti was hired as the first part-time professional staff member of the Pulmonary Hypertension Association. In the years since, he’s assumed the title of President of the organization, enhanced PHA’s scope, built a full-time staff, and advocated tirelessly to increase awareness about pulmonary hypertension. Here, Community talks to Rino about where PHA has been, and where it’s going. Describe the journey in becoming President of PHA. In 1998, seven years after PHA’s founding, the organization’s volunteer leadership decided to build a staff. Their first step was to advertise for a part-time executive director. They put an ad in the Chronicle of Philanthropy, running it once. At the time they were doing this, I was a non-profit consultant. I had just finished a five-year project for one of my larger clients and was getting ready to do what I always did when I was preparing to think through a new direction, begin a three-day retreat. The day before I was to begin, I picked up the Chronicle of Philanthropy and saw a brief two-line ad: “Small rare disease association looking for part-time executive director”. I responded and was invited to meet with an extraordinary person, Bonnie Dukart, who was PHA’s president. Bonnie, who had been diagnosed with PH shortly after graduating from college, explained to me that the goal was to bring on a person who could increase PHA’s budget so that the organization could do more. Following that meeting, I had the opportunity to meet the board and quickly became aware that I was in the presence of heroes. I soon accepted the board’s offer and became PHA’s first (part-time) professional staff person in 1999. By 2001, we had increased PHA’s income from $132,000 to $1.1 million and built a small part-time staff. The board then invited me to lead a new full-time staff. The work has always been a privilege.

What are some of the challenges you face when trying to increase awareness or support a rare disease like pulmonary hypertension? Our greatest challenge in raising awareness about PH is our relatively small numbers. A rare disease in the U.S. is defined as one with 200,000 or fewer patients. PH has 20,000 to 30,000 diagnosed patients. Given that reality, each person’s decision to make a difference is of enormous importance. At PHA, our mantra is that any person whose life is touched by PH has the right to fight back as much or as little as health and interest allow. Over and over again we have seen what the ability to influence positive change means in people’s lives. We may have 30,000 patients living with this disease, but each has family members and friends, neighbors and medical professionals who care and are ready to help. Harnessing that energy with a strong community is what makes a real difference. What are some of your goals for PHA for 2013? In this economic and political environment, organizations that cannot adapt will ultimately decline. At PHA, we have been working hard over the past year to introduce new ways to support our research and patient-serving programs. In December, we opened PHA’s first three chapters – in New York, Chicago and San Francisco. This is a pilot for us to build a professional events structure that will develop a larger population of supporters for our core programming in communities around

the country. If we are successful in our first year, we will implement a five-year program to expand the network. It’s an ambitious effort to not only assure our sustainability, but to make sure that our ability to serve the needs of our community is not limited by funding restrictions. PHA’s early diagnosis program, Sometimes It’s PH Campaign, was launched at our 2012 International Conference and has generated early excitement in the U.S. and other nations. It came about following research indicating that despite all the increased visibility for PH during the past 20 years, the time from onset of symptoms to point of diagnosis has not reduced. This may not have been a problem two decades ago when there were no treatments; however, today with nine treatments and more on the way, getting patients diagnosed so that they can take advantage of these treatments is hugely important. Why should a PH patient join PHA? PHA is more than an organization. It’s a community, a place where people understand and help each other get through the challenges of this difficult disease. The strength of the community has value for the individuals who choose to join. It also has value for the whole, for all who live with the disease through our collective ability to develop public awareness, drive advocacy and sustain helping networks. These are things we can only do together and that will create opportunities for better tomorrows for everyone. 35

hat Will The Affordable Health Care Act Save You?

By Anita G. Lester, CVC Health Care Attorney The Affordable Care Act (ACA) enacts a series of sweeping reforms that will generate billions of dollars in savings. The reform savings are designed to strengthen the financial integrity of the Medicare system and to create savings for Medicare beneficiaries. We will explore three such savings opportunities.

A New Day for Medicare Advantage Plans

Medicare Advantage Plans (or MA Plans) are offered by private companies that are approved and funded by Medicare. MA Plan members receive their Medicare Part A (Hospital Insurance) and Medicare Part B (Medical Insurance) coverage from the MA Plan and not Original Medicare. Historically, MA Plans were allowed to charge their members more for the same services provided under Original Medicare at a lower cost. Under the ACA, Medicare will lower the per person payment of MA Plans, bringing cost more in line with the per person health care allotment paid under Original Medicare. What does this mean for Medicare beneficiaries? Lower Medicare premiums, since Original Medicare beneficiaries will no longer bear the cost of higher MA Plan payments.

Lower Part B Premiums

The standard Part B premium is set to represent 25% of expected costs in the Medicare program for any upcoming year. Over the past two years, about 75% of beneficiaries have paid Part B premiums of $96.40 a month. Part B premium increases are tied to the Social Security Cost of Living Allowance (COLA) increases. With no COLA in 2010 or 2011, Part B premiums have remained at 2009 levels pursuant to 1987 Congressional action. Some beneficiaries were not protected under the 1987 law because they were new to Medicare or had higher premiums because of high incomes. Under the ACA, the Medicare system has returned to a single standard Part B premium. Beneficiaries not

caringvoice.org • Spring 2013, The Caregiving Issue

covered by the 1987 law saw their premiums fall in 2012. Those who paid $110.50 saved $10.60 a month and those who paid $115.40 saved $15.50. People paying the higher-income premiums also saw their Part B premiums fall in amounts ranging from $21.60 to $49.40 a month, according to their income level. The annual deductible for Part B, which covers doctors’ services, outpatient procedures and medical equipment, was lowered from $162 to $140. These savings will continue to lower Part B premiums by nearly $200 annually by 2018.

Medicare Part D: Closing the Donut Hole By 2020 The Coverage Gap (or Donut Hole) has caused a considerable amount of confusion for many people and has often surprised beneficiaries when they’re suddenly required to pay a higher price for their prescription medications. The Donut Hole phase of Part D coverage begins when total retail drug costs reach $2,970. Beneficiaries remain in the Donut Hole until their costs exceed $4,750.

Efforts to close the Donut Hole began in 2011, with anyone who reached the Donut Hole receiving a 50 percent discount on brand-name formulary drugs and a 7 percent discount on all generic formulary medications. In 2013, anyone reaching the Donut Hole will receive a 52.5 percent discount on brand-name formulary drugs and a 21 percent discount on all generic formulary medications. The drug discounts will continue to rise until 2020 when the Donut Hole will be eliminated altogether, thereby reducing prescription drug cost. While much of the ACA has yet to be implemented, here’s what has changed because of it. More than five million seniors are paying less for prescription drugs, and the life of the Medicare Trust Fund will be extended to at least 2024. In addition, over the next 10 years, the law will save the average person $4,200 in Medicare costs, and save Medicare beneficiaries who hit the Donut Hole an average of more than $16,000.

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