COMMUNITY Magazine, Fall 2014 - The Sleep Issue by Caring Voice Coalition

COMMUNITY

Sleep

Volume 3 • Issue 3 • Fall 2014 • The Quarterly Publication of Caring Voice Coalition, Inc.

The

Sleep and Chronic Illness

Issue

Tips for Better Sleep

Delicious, Nutritious Recipes

Accessible City —Philadelphia Reaching out with Alpha-1 Living with Narcolepsy PLUS

Disability and Work • Health Insurance Open Enrollment

How will you remember

Caring Voice Coalition? Planned Giving You can make an extraordinary difference in the lives of others by making a planned gift to Caring Voice Coalition. Remembering Caring Voice in your will or trust is a simple way to leave a lasting legacy. Contributions including cash, appreciated securities, or a charitable bequest help to ensure that Caring Voice continues to provide financial assistance and patient support to aid in the journey of those with chronic illnesses. Your donations are fully deductible for estate tax purposes. For more information on how you can include Caring Voice in your estate plans, please contact: Rebecca App, Director of Finance 888-267-1440 ext. 106 financedept@caringvoice.org

Weâ&#x20AC;&#x2122;re Here to Help.

CONTENTS

FALL 2014

The Sleep Issue

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

9 CVC Close Up

CVC Communications Specialist, Sabrina Parmelee, describes how her family shaped her love of helping people and putting the needs of others first.

20 Pillow Fight

Sleep experts discuss sleep and chronic illness, including testing for sleep disorders, what to look for in a sleep specialist, and tips for better sleep.

13 Q & A

CVC’s LegalShield representative, Kimberly Ferris, outlines the benefits of having a legal plan.

16 To Your Health

CVC Senior Case Manager, Lauren

Ruiz, provides details and deadlines for health insurance open enrollment, explains the different types of Medicare plans, and defines common health insurance terms.

18 The Right Track

Determined to find answers after she had fallen asleep at the wheel twice, Judy Orand was finally diagnosed with narcolepsy, two decades after her symptoms first appeared.

25 Healthy Mix

accessibility for visitors, with stops including an old-fashioned candy store and soda fountain, the interactive Ben Franklin Museum, and attractions in neighboring countryside towns.

Top chefs and a dietician serve up delectable recipes to suit a range of patient and caregiver needs, from nutritious, low-fat snacks to high-protein, low-salt meals.

28 Legal Corner

CVC Health Care Advocate, Stephanie Posuniak, explores federal programs that help those with disabilities find employment.

30 Philadelphia Freedom

CVC checks out Philadelphia’s

33 In Your Words

iagnosed with alpha-1 antitrypsin D deficiency in May 2011, Sherry Gochenour connects with fellow patients and emphasizes the importance of promoting awareness of the disease.

Cover photo: Retroklips

Staf f

Publishers

Editor in Chief

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

Eva Leonard 888.267.1440, ext. 105 eleonard@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.

Director of Communications

Graphic Design & Illustration

Jennifer Previtera 888.267.1440, ext. 141 jprevitera@caringvoice.org

Anthony Nesossis 888.267.1440, ext. 174 anesossis@caringvoice.org

Please recycle this issue.

Contributors Sherry Gochenour After years spent working in potentially lung-damaging environments, former high school track star Sherry Gochenour was diagnosed with alpha-1 antitrypsin deficiency in 2011. She is involved with online patient support groups, sharing what she has learned about the disease. Timothy Morgenthaler, M.D. President of the American Academy of Sleep Medicine, Timothy Morgenthaler, M.D., is board certified in sleep medicine, pulmonary medicine, and critical care medicine. He is professor of medicine at Mayo Clinic in Rochester, Minnesota and serves as the Mayo Clinic patient safety officer. His main clinical interests are sleep-disordered breathing, patient safety, and improving healthcare delivery. John Ondo Chef and owner of the acclaimed Lana Restaurant and Bar in Charleston, South Carolina, John Ondo attended Culinary Institute of Charleston. His Mediterranean-inspired cuisine focuses on local, seasonal ingredients and natural flavors. Judy Orand Although her symptoms had begun two decades earlier, Judy Orand wasn’t diagnosed with narcolepsy until 1994. A licensed nursing home administrator, and a former crisis manager, she lives with her husband in Fulton, Texas. Althea Robinson-Shelton, M.D. Althea Robinson-Shelton is assistant professor of the Neurology-Sleep Division at Vanderbilt University in Nashville, Tennessee. Board certified in neurology, Dr. Robinson-Shelton researches, diagnoses and treats pediatric sleep and epilepsy disorders and was recipient of the William Penry Epilepsy Minifellowship and the American Academy of Neurology Residents Scholarship. Lauren Ruiz Lauren Ruiz is a senior case manager overseeing both the alternate coverage and premium assistance departments at CVC. To prepare for the launch of the Federal Health Insurance Marketplace under the Affordable Care Act, Ruiz became a certified application counselor in 2013. She researches changes in the insurance field and trains her team to identify potential coverage opportunities and financial assistance programs for CVC’s patients. Jennifer Stack Jennifer Stack is an associate professor of Liberal Arts at the Culinary Institute of America (CIA), in Hyde Park, New York, teaching nutrition and food safety to students in the college’s degree programs. A registered dietitian and a certified diabetes educator, Stack is a 2003 CIA graduate and also holds a Master of Science degree in nutrition from New York University. Jeff Tunks Award-winning executive chef and co-proprietor of Cieba restaurant in Washington, D.C., Jeff Tunks has opened eight restaurants that feature cuisines with a broad range of international influences. After losing more than 100 pounds, Tunks has appeared in a variety of media, including on The Today Show, demonstrating how to cook and eat healthfully. Robert Wiedmaier Owner of six restaurants, including Marcel’s in Washington, D.C., chef Robert Wiedmaier emphasizes natural flavors in his award-winning, European-influenced cuisine.

caringvoice.org • Fall 2014 • The Sleep Issue

Community Editor’s Letter Eva Leonard

In this issue of Community, we focus on one of the basic human needs — sleep. It’s all too easy to downplay the importance of good, regular sleep and to form

bad sleep habits, convincing ourselves that it’s ok to stay up late or to ignore regular sleep disturbances because we can catch up on sleep over the weekend.

But as one of the three pillars of a healthy lifestyle, along with good nutrition

and regular exercise, sleep should not be given short shrift. Being consistently

well rested helps health, mood, performance, cognition, coordination and energy and makes you better prepared to both handle the challenges and enjoy the pleasures of life.

For those with chronic illnesses, sleep can be especially elusive, as underlying

sleep disorders can contribute to the struggle to get good rest. We talked to noted sleep researchers and physicians about ways to improve sleep, and the relationship between sleep and chronic illness. One of their top tips: Having a regular sleep

ritual — taking the time to properly wind down before sleep — is important for both adults and children.

That means avoiding the trappings, bright lights, and stimulation of technology

a few hours before sleep — turning off the TV and video games, shutting down

the computer, resisting the temptation to lose yourself in social media or in binge-watching episodes of your favorite series. Sticking to regular sleep, wake, and meal times, as much as possible, is also crucial, so as not to upset your circadian rhythm.

This issue also outlines what to look for in a sleep specialist and in sleep centers,

as well as some of the sleep tests that can help reveal sleep disorders, if, despite your best efforts, sleep still eludes you,

Our goal is to provide you with the tools you need, so that you don’t feel as

though you have to fight to sleep well. We want sleep to come easily to you, so that you can wake refreshed, rested, and ready to get the most out of life. And we

Photo by Charlie O᾽Donnell

wish you sweet dreams.

CVC Vice President’s Letter Samantha Harris Even though sleep is essential for an individual’s health and wellbeing, nearly half of Americans get less than the recommended amount of sleep each night. When life gets busy, sleep tends to fall to the bottom of our priority lists, leaving our minds and bodies stressed, sick and burned-out. For individuals living with chronic illness, it’s especially important to get an

adequate amount of sleep to aid in stress reduction, pain relief and fatigue, while keeping symptoms to a minimum. If your sleep suffers when life becomes demanding

and stressful, remember to take time to care of yourself, whether it’s by putting a

regular sleep and wake schedule in place, minimizing nighttime stimulation, talking to your health care provider, or finding a sleep specialist to diagnose and treat any possible sleep disorders.

This issue of Community features information about the health benefits of sleep, and

tips to help you get deeper and more restful sleep, as well as recipes that provide your body with nutrition to give you energy throughout the day.

The health benefits of sleep vary. Some affect your overall quality of life, while

others affect your health directly. Emphasizing the importance of eating right, getting

an adequate amount of sleep, drinking enough water, and exercising can help you

caringvoice.org • Fall 2014 • The Sleep Issue

Photo: Taylor Scott

begin to feel better and put you back on the road to healthy living.

CVC COMMUNITY

We’d like to hear from you! Email your feedback and questions to: magazine@caringvoice.org

The timing [of the accessible travel story in the summer issue of Community magazine] could not have been better. I have been stressing out about an upcoming trip, and, after reading the article, my fears were put to rest about flying with oxygen. I made my reservations and had no difficulty at all about using my POC (portable oxygen concentrator) with the airlines, as it is FAA approved. Now I can look forward to my trip, instead of stressing about it. Thank you so much, CVC. Once again you have helped me gain control of my life, even with PAH!

— Cindy Spiller

Doral, Florida

I have narcolepsy and cataplexy, am the father of two, and if weren’t for Caring Voice Coalition, I would not have been getting my medicine that helps me function routinely. I finally made it across the stage for my bachelor’s degree —this was due to CVC stepping in and advocating for me. My medications cost tens of thousands of dollars each month — CVC’s help is priceless. Thanks so much for giving me my life back.

— Brent Allen Caputo

Kenosha, Wisconsin

Without Caring Voice, it would not have been possible for my husband and me to meet other Alphas and be more informed. Kudos to your agency.

— Jana and Daryl Fordyce

Windsor, Colorado

My husband and I went on a cruise last month to Bermuda. We flew from Shreveport, Louisiana, to New Jersey. I filled out all the forms for the portable oxygen concentrator supplier

Readers’ Comments

and took them to my doctor, who completed them and faxed them to the company. We left Shreveport and got to Newark by way of Atlanta without any trouble. After the cruise, we returned to Newark to fly home. At the airport, I was told that in order to fly, I needed two more batteries, which I did not have, for my portable oxygen concentrator. It seems that at home, I use a large concentrator on continuous flow, and when out, I use pulse mode. My doctor had checked continuous flow. It took over an hour and a half to get me on the plane. My doctor in Shreveport had to call the portable oxygen concentrator company and change the flow. Then, questions were asked, and finally the airline let me on the plane. I am so glad that we allowed three hours to get everything done and that I didn’t have to buy more batteries at $225 a piece. Lesson learned — check everything twice.

— Martha Thompson

Shreveport, Louisiana

For this issue of Community, we asked CVC’s Facebook followers for their tips on getting good sleep. Here’s one that might prove helpful to readers:

Having Alpha-1, I find that Sleepytime tea, a warm bath, and always having my fan on help me sleep, especially if I have one of those nights when my body shuts down, and my brain won’t stop thinking.

— Sherry Gochenour

Penn Laird, Virginia

For more sleep tips, turn to page 20 for this issue’s “Pillow Fight” cover story on sleep and chronic illness!

Donate to Support Community Magazine Your contributions help fund Caring Voice Coalition’s quarterly Community magazine. We’re dedicated to providing supportive content in Community and on the CVC website, both for patients living with rare diseases, and for their caregivers. Please consider donating to Caring Voice Coalition’s Community magazine. Please use the attached donation envelope to send your tax-deductible contribution to Community.

Su er F d and Travel I ue!

Accessible Travel Worldwide Tasty Gluten-Free Recipes from Top Chefs

We greatly appreciate your generosity.

Learning to Live with Pulmonary Hypertension When Huntington's Disease is Unexpected PLUS

Tips for Traveling with Chronic Illness Your Rights as a Traveler

Subscribe to Community Magazine COMMUNITY Volume 2 • Issue 3 • Fall 2013 • The Quarterly Publication of Caring Voice Coalition, Inc.

Children

+ Creativity

The Art and Life of Paul Klee Alpha-1 Advocate Len Geiger’s Photography HDYO’s Creative Expression

Plus

Pediatric Lung Transplant Q & A—Thomas Spray, M.D. Children’s Health Insurance Program Pediatric Narcolepsy And More

CVC’s Community magazine, published four times a year, is packed with helpful information for patients, caregivers, and health care providers. Every issue features patient profiles, interviews with medical experts, information on support groups, and in-depth coverage of health care and legal topics that affect those living with rare and chronic illnesses. Get a year of Community magazine—four quarterly issues—for only $10. Subscribe to Community online at: www.caringvoice.org/?p=4035 or send the completed form below with a check for $10 payable to Caring Voice Coalition: Community Magazine Subscriptions Caring Voice Coalition 8249 Meadowbridge Road Mechanicsville, VA 23116

Community Magazine Subscription Name Street Address City, State, Zip Code (Please write "Community Magazine Subscription" in the memo section of your check.)

caringvoice.org • Fall 2014 • The Sleep Issue

Close Up

Sabrina Parmelee CVC Communications Specialist

Photo by Charlie O’Donnell

JOINED CVC IN JUNE 2012. I HAD BEEN working part-time in a hotel as a guest service agent, while recovering from neck surgery. A CVC employee who visited the hotel with his family was so impressed with my service that he referred me to CVC and told me that they were looking for people with big hearts and great personalities. I had not heard about CVC before, nor did I know what they were all about. Now, having worked here for two years, I can clearly see why passionate people are needed to work in an organization like this. I have always loved helping people. I’m a giver, and CVC gives to people in need, asking nothing in return. The gratitude I hear in our patients’ voices when they call us helps me to know and feel every day that I am where I belong. I was raised in a military family. My first language was German, then English, and I also speak some Spanish. My mom is originally from Germany, where our family had the privilege of spending several tours stationed throughout various cities. We were always within a couple of hours from my mom’s side of the family, which allowed us to spend our summer vacations at Grandma’s house.

caringvoice.org • Summer 2013, The Healthy Eating Issue

My mother and grandmother were always a big influence in my life. Words can’t even begin to describe how grateful I am for all the love, support and constant guidance they gave me. The person I am today is a total reflection of these two strong women. Both of them taught me the values of working hard, treating others with love, kindness, and deep respect, and putting the needs of others before my own. My husband and I share four wonderful grown children and two beautiful grandchildren. We love to spend quality time together with family and friends, working out in the ministry, and traveling, camping, biking and kayaking with our family dog, Sadie. I also enjoy cooking, baking, and writing poetry in my spare time. I have always believed that a smile is contagious and goes a long way. I try to make patients feel that smile over the phone. If I can bring a little joy to our patients and put a smile on their faces, my day feels complete. Anything in life is possible. It reminds me of a German expression that my grandmother used to say: ‘Wo ein Wille ist, ist auch ein Weg.’ It means, ‘Where there’s a will, there’s a way.’

all encompassing

ongoing support & resources

Comprehensive Personalized Patient Prescription Advocacy & Support Services (COMPASSSM) for patients in need of ACTIMMUNE® (Interferon gamma-1b) therapy offers patients, families, and healthcare providers one-stop convenient access to a range of support services, such as: •

Clinical Nurse Program: Once enrolled, patients can reach a registered nurse who can provide valuable information and helpful resources on how to manage their condition

•

Reimbursement Hotline: The Program Coordinators at COMPASSSM can help patients gain access to ACTIMMUNE® and navigate through insurance questions

•

Co-Pay Assistance Program: Will help limit co-pay costs for patients to a maximum of $50 per month. (This co-pay assistance program is not insurance. This program is not available for prescriptions that are paid in whole or in part by federally funded programs, including but not limited to Medicaid, Medicare, TRICARE, or other state or federal healthcare programs, or in states where prohibited by law)

•

Patient Assistance Program: For patients who do not have insurance or whose insurance plans do not cover ACTIMMUNE®, COMPASSSM may provide the medication to eligible patients at no cost

•

Sharps Container Program (for syringe disposal): Once enrolled, patients can opt in to have a Sharps Container and return shipping materials shipped directly to them at no cost

LEARN MORE. Call 877-305-7704, fax 877-305-7706, or visit compassforpatients.com

Indications and Usage Chronic Granulomatous Disease (CGD) ACTIMMUNE® (Interferon gamma-1b) is approved by the US Food and Drug Administration to reduce the frequency and severity of serious infections associated with Chronic Granulomatous Disease. CGD is a genetic disorder that affects the functioning of some cells of the immune system. Severe, Malignant Osteopetrosis (SMO) ACTIMMUNE® (Interferon gamma-1b) is approved by the US Food and Drug Administration to slow the worsening of severe, malignant osteopetrosis. SMO is also a genetic disorder that affects normal bone formation. Important Safety Information (ISI) ACTIMMUNE® is contraindicated in patients who develop or have known hypersensitivity to interferon-gamma, E. coli-derived products, or any component of the product. The most common adverse experiences occurring with ACTIMMUNE® therapy are “flu-like”, or constitutional symptoms such as fever, headache, chills, myalgia, or fatigue, which may decrease in severity as treatment continues. Some of the “flu-like” symptoms may be minimized by bedtime administration of ACTIMMUNE®. Acetaminophen may be used to prevent or partially alleviate the fever and headache. Reversible neutropenia and thrombocytopenia have been observed during ACTIMMUNE® therapy. Caution should be exercised when administering ACTIMMUNE® in patients with myelosuppression or in combination with other potentially myelosuppressive agents. Reversible elevations of AST and/or ALT have been observed during ACTIMMUNE® therapy. Patients begun on ACTIMMUNE® therapy before one year of age should receive monthly assessments of liver function. If severe hepatic enzyme elevations develop, ACTIMMUNE® dosage should be modified. At doses 10 times greater than the weekly recommended dose, ACTIMMUNE® may exacerbate pre-existing cardiac conditions or may cause reversible neurological effects such as decreased mental status, gait disturbance and dizziness. Therefore, caution is advised when ACTIMMUNE® is administered to patients with seizure disorders or compromised CNS function or when administered to patients with cardiac conditions such as ischemia, heart failure or arrhythmia. If you are pregnant or plan to become pregnant you should consult with your physician. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. This information is not intended to replace discussions with your doctor. For additional information about ACTIMMUNE®, please consult the Full Prescribing Information and the Information for the Patient/Caregiver and talk to your doctor. ACTIMMUNE® is available by prescription only. See Full Prescribing Information at actimmune.com Please consult the Brief Summary of Prescribing Information on the following page.

ACTIMMUNE® (Interferon gamma-1b)

Rx only

Brief Summary of Prescribing Information: See package insert for Full Prescribing Information INDICATIONS AND USAGE ACTIMMUNE® (Interferon gamma-1b) is indicated for reducing the frequency and severity of serious infections associated with Chronic Granulomatous Disease. ACTIMMUNE is indicated for delaying time to disease progression in patients with severe, malignant osteopetrosis. CONTRAINDICATIONS ACTIMMUNE is contraindicated in patients who develop or have known hypersensitivity to interferon-gamma, E. coli derived products, or any component of the product. WARNINGS AND PRECAUTIONS Cardiovascular Disorders Acute and transient “flu-like” symptoms such as fever and chills induced by ACTIMMUNE at doses of 250 mcg/m2/day (greater than 10 times the weekly recommended dose) or higher may exacerbate pre-existing cardiac conditions. ACTIMMUNE should be used with caution in patients with pre-existing cardiac conditions, including ischemia, congestive heart failure or arrhythmia. Neurologic Disorders Decreased mental status, gait disturbance and dizziness have been observed, particularly in patients receiving ACTIMMUNE doses greater than 250 mcg/ m2/day (greater than 10 times the weekly recommended dose). Most of these abnormalities were mild and reversible within a few days upon dose reduction or discontinuation of therapy. Caution should be exercised when administering ACTIMMUNE to patients with seizure disorders or compromised central nervous system function. Bone Marrow Toxicity Reversible neutropenia and thrombocytopenia that can be severe and may be dose related have been observed during ACTIMMUNE therapy. Caution should be exercised when administering ACTIMMUNE to patients with myelosuppression. Hepatic Toxicity Elevations of AST and /or ALT (up to 25-fold) have been observed during ACTIMMUNE therapy. The incidence appeared to be higher in patients less than 1 year of age compared to older children. The transaminase elevations were reversible with reduction in dosage or interruption of ACTIMMUNE treatment. Patients begun on ACTIMMUNE before age one year should receive monthly assessments of liver function. If severe hepatic enzyme elevations develop, ACTIMMUNE dosage should be modified (see DOSAGE AND ADMINISTRATION: Dose Modification in the Full Prescribing Information). General Precautions Isolated cases of acute serious hypersensitivity reactions have been observed in patients receiving ACTIMMUNE. If such an acute reaction develops the drug should be discontinued immediately and appropriate medical therapy instituted. Transient cutaneous rashes have occurred in some patients following injection but have rarely necessitated treatment interruption. ADVERSE REACTIONS The following data on adverse reactions are based on the subcutaneous administration of ACTIMMUNE at a dose of 50 mcg/m2, three times weekly, in patients with Chronic Granulomatous Disease (CGD) during an investigational trial in the United States and Europe. The most common adverse events observed in patients with CGD are shown in the following table: Clinical Toxicity Fever Headache Rash Chills Injection site erythema or tenderness Fatigue Diarrhea Vomiting Nausea Myalgia Arthralgia Injection site pain

Percent of Patients ACTIMMUNE Placebo CGD (n=63) CGD (n=65) 52 33 17 14 14 14 14 13 10 6 2 0

28 9 6 0 2 11 12 5 2 0 0 2

Miscellaneous adverse events which occurred infrequently in patients with CGD and may have been related to underlying disease included back pain (2 percent versus 0 percent), abdominal pain (8 percent versus 3 percent) and depression (3 percent versus 0 percent) for ACTIMMUNE and placebo treated patients, respectively. Similar safety data were observed in 34 patients with severe malignant osteopetrosis.

POST-MARKETING EXPERIENCE Children with CGD less than 3 years of age: Data on the safety and activity of ACTIMMUNE in 37 patients under the age of 3 years was pooled from four uncontrolled post-marketing studies. The rate of serious infections per patient-year in this uncontrolled group was similar to the rate observed in the ACTIMMUNE treatment groups in controlled trials. Developmental parameters (height, weight and endocrine maturation) for this uncontrolled group conformed to national normative scales before and during ACTIMMUNE therapy. In 6 of the 10 patients receiving ACTIMMUNE therapy before age one year 2-fold to 25-fold elevations from baseline of AST and/or ALT were observed. These elevations occurred as early as 7 days after starting treatment. Treatment with ACTIMMUNE was interrupted in all 6 of these patients and was restarted at a reduced dosage in 4. Liver transaminase values returned to baseline in all patients and transaminase elevation recurred in one patient upon ACTIMMUNE rechallenge. An 11-fold alkaline phosphatase elevation and hypokalemia in one patient and neutropenia (ANC= 525 cells/mm3) in another patient resolved with interruption of ACTIMMUNE treatment and did not recur with rechallenge. In the post-marketing safety database clinically significant adverse events observed during ACTIMMUNE therapy in children under the age of three years (n=14) included: two cases of hepatomegaly, and one case each of Stevens-Johnson syndrome, granulomatous colitis, urticaria, and atopic dermatitis. DRUG INTERACTIONS Interactions between ACTIMMUNE and other drugs have not been fully evaluated. Caution should be exercised when administering ACTIMMUNE in combination with other potentially myelosuppressive agents (see WARNINGS). Preclinical studies in rodents using species-specific interferon-gamma have demonstrated a decrease in hepatic microsomal cytochrome P-450 concentrations. This could potentially lead to a depression of the hepatic metabolism of certain drugs that utilize this degradative pathway. USE IN SPECIFIC POPULATIONS-Pregnancy Category C. ACTIMMUNE has shown an increased incidence of abortions in primates when given in doses approximately 100 times the human dose. A study in pregnant primates treated with subcutaneous doses 2-100 times the human dose failed to demonstrate teratogenic activity for ACTIMMUNE. There are no adequate and well-controlled studies in pregnant women. ACTIMMUNE should be used during pregnancy only if the potential benefit justifies the potential risk to the fetus. Nursing Mothers It is not known whether ACTIMMUNE is excreted in human milk. Because many drugs are excreted in human milk and because of the potential for serious adverse reactions in nursing infants from ACTIMMUNE, a decision should be made whether to discontinue nursing or to discontinue the drug, dependent upon the importance of the drug to the mother. Carcinogenesis: ACTIMMUNE has not been tested for its carcinogenic potential. OVERDOSAGE Central nervous system adverse reactions including decreased mental status, gait disturbance and dizziness have been observed, particularly in cancer patients receiving doses greater than 100 mcg/m2/day by intravenous or intramuscular administration. These abnormalities were reversible within a few days upon dose reduction or discontinuation of therapy. Reversible neutropenia, elevation of hepatic enzymes and of triglycerides, and thrombocytopenia have also been observed. DOSAGE AND ADMINISTRATION (see Dosing and Administration in Full Prescribing Information) The recommended dosage of ACTIMMUNE for the treatment of patients with Chronic Granulomatous Disease and severe, malignant osteopetrosis is 50 mcg/m2 (1 million IU/m2) for patients whose body surface area is greater than 0.5 m2 and 1.5 mcg/kg/dose for patients whose body surface area is equal to or less than 0.5 m2. Note that the above activity is expressed in International Units (1 million IU/50mcg). This is equivalent to what was previously expressed as units (1.5 million U/50mcg). Injections should be administered subcutaneously three times weekly (for example, Monday, Wednesday, Friday). The optimum sites of injection are the right and left deltoid and anterior thigh. ACTIMMUNE can be administered by a physician, nurse, family member or patient when trained in the administration of subcutaneous injections. Parenteral drug products should be inspected visually for particulate matter and discoloration prior to administration, whenever solution and container permit. The formulation does not contain a preservative. A vial of ACTIMMUNE is suitable for a single use only. The unused portion of any vial should be discarded. Higher doses are not recommended. Safety and efficacy has not been established for ACTIMMUNE given in doses greater or less than the recommended dose of 50 mcg/m2. The minimum effective dose of ACTIMMUNE has not been established. ACTIMMUNE should not be mixed with other drugs in the same syringe. DOSE MODIFICATION If severe reactions occur, the dosage should be reduced by 50 percent or therapy should be interrupted until the adverse reaction abates.

ACTIMMUNE has also been evaluated in additional disease states in studies in which patients have generally received higher doses (>100 mcg/m2/three times weekly) administered by intramuscular or subcutaneous injection, or intravenous infusion. All of the previously described adverse reactions which occurred in patients with Chronic Granulomatous Disease have also been observed in patients receiving higher doses. Adverse reactions not observed in patients with Chronic Granulomatous Disease but reported in patients receiving ACTIMMUNE (Interferon gamma-1b) in other studies include: Cardiovascular—hypotension, syncope, tachyarrhythmia, heart block, heart failure, and myocardial infarction. Central Nervous System—confusion, disorientation, gait disturbance, Parkinsonian symptoms, seizure, hallucinations, and transient ischemic attacks. Gastrointestinal— dyspepsia, hepatic insufficiency, gastrointestinal bleeding, and pancreatitis, including pancreatitis with fatal outcome. General Disorders and Administration Site Conditions—malaise, injection site hemorrhage. Hematologic—deep venous thrombosis and pulmonary embolism. Immunological— increased autoantibodies, lupus-like syndrome. Metabolic—hyponatremia, hyperglycemia, and hypertriglyceridemia. Musculoskeletal—clubbing, muscle spasms. Pulmonary—tachypnea, bronchospasm, and interstitial pneumonitis. Renal—reversible renal insufficiency. Other—chest discomfort, exacerbation of dermatomyositis. Abnormal Laboratory Test Values: Elevations of ALT and AST, neutropenia, thrombocytopenia, and proteinuria have been observed (see WARNINGS and PRECAUTIONS: Laboratory Tests).

INFORMATION FOR PATIENTS Patients being treated with ACTIMMUNE and/or their parents should be informed regarding the potential benefits and risks associated with treatment. If home use is determined to be desirable by the physician, instructions on appropriate use should be given, including review of the contents of the Patient Information Insert. This information is intended to aid in the safe and effective use of the medication. It is not a disclosure of all possible adverse or intended effects.

No neutralizing antibodies to ACTIMMUNE have been detected in any Chronic Granulomatous Disease patients receiving ACTIMMUNE.

If home use is prescribed, a puncture resistant container for the disposal of used syringes and needles should be supplied to the patient. Patients should be thoroughly instructed in the importance of proper disposal and cautioned against any reuse of needles and syringes. The full container should be disposed of according to the directions provided by the physician (see Information for the Patient/Caregiver). The most common adverse experiences occurring with ACTIMMUNE therapy are “flu-like” or constitutional symptoms such as fever, headache, chills, myalgia or fatigue (see ADVERSE REACTIONS) which may decrease in severity as treatment continues. Some of the “flu-like” symptoms may be minimized by bedtime administration. Acetaminophen may be used to prevent or partially alleviate the fever and headache.

Q&A CVC spoke with attorney Kim Ferris, CVC’s LegalShield representative, about what drew her to LegalShield, and the benefits of membership in the low-cost legal plan, which CVC offers to its patients. What did you do before you began working with LegalShield? I am an attorney. I practiced law in the litigation department with a large, corporate law firm in upstate New York, and then I was in-house counsel for a Fortune 500 company. In my practice of law, I came across many clients who couldn’t afford justice. The cost of legal services exceeded the claim that they had. Many times, they had to write things off and not seek legal recourse, because it didn’t make economic sense to do so. Lawyers may charge $300 an hour or more for their services. That’s a big amount for the average person. Most of us can’t afford $300 an hour for very long. Even at $100 an hour, which is rare and cheap, it still doesn’t make economic sense to pursue your rights in many cases. Unless you qualify for legal aid, which only a small percentage do, you’re pretty much on your own. What drew you to the field of law? Really understanding what a person’s rights are and being an advocate for other people attracted me to the legal profession. I believe that information is power when it comes to law, and a lot of people don’t have that information. If you don’t know your legal rights, then you don’t have any. I figured that I could help people and use my skills—analytical writing, public speaking, and performance under pressure—to help others. What I found was that only the very wealthy could afford an attorney like me. Those who really needed me were priced out of the market

very quickly. If I’d had to hire me, I wouldn’t have been able to afford me! So, suddenly, my legal practice was not quite as fulfilling as I had initially thought. I now understood how people really needed sound legal advice and had no reasonably affordable way to obtain it. I always thought I could perform as a sales professional if I could offer a product or a service in which I truly believed. While I was working as an in-house attorney, my employer filed Chapter 11 and offered everyone a voluntary severance package. I saw that as an opportunity to take the package and find out what I really wanted to do. How did you find out about LegalShield? I started researching online opportunities related to legal, sales, and public speaking. By plugging all of that in, I learned about what was then called Pre-Paid Legal Services (now LegalShield). I had no idea something like this even existed! I loved the membership. I got passionate about the whole thing instantly. I was really excited about how I could make a difference in peoples’ lives, even if I wasn’t the one doing the legal work. I could still get them access to the folks they needed. As a lawyer, I really understood the value of the service first hand, because I knew how much something like that would actually cost, and what would be involved. I also found that many of the local attorneys who were part of the LegalShield network here in this area

were people that I knew from practicing law to be good lawyers. When I learned that, I thought, ‘This is a high-quality service. They’re using high-quality lawyers.’ What do you think is important for people to know about LegalShield? There are checks and balances to ensure quality service. When you don’t have a legal plan, you don’t have that guarantee, really, if you just hire someone on your own. With LegalShield, there is a third party, the company, to which [the attorneys] have to be accountable for the quality of the service and response time to get back to the member. LegalShield attorneys are also trained in the human side of legal issues. They’re in the business to help people, and understand that the people who call them might not have used lawyers before. They know they need to come at it from that level, and make people feel more comfortable and at ease. LegalShield can cut down the cost of everyday services that folks need. Not everyone has a legal issue at the same time, so they can deliver the services when you need them, as if you were paying $200 or $300 an hour, but you’re not. The membership really has two components. First, you can use it proactively and preventatively. For example, you can get your Will completed, including your Healthcare Proxy and Power of Attorney, as part of your membership. This is usually the number one reason why our CONTINUED ON PAGE 14

members join. This way you can have your wishes honored regarding your health, finances, and loved ones while you are still living, at the end of your life and after you have passed. Also, you can prevent a major crisis from happening by getting upfront legal advice, a letter written, or a phone call made. Where normally, it would be a financial decision to do something like that, it’s not, when you have a membership. The other half of the membership is the peace of mind aspect. There are parts of the membership that you hope you never have to use, but if you do, you’re sure glad you have it. CVC patients can call me, and I will talk to them about any aspect of the membership. Some people just want to know what the membership is and how it works. There are other folks who have a legal issue that they’ve been dealing with, or not been dealing with, and it’s driving them crazy, and they want to know how the membership can help them with it. Some want to

get a Will done, but have been putting it off. Being a lawyer and having been in the trenches for so long, I know the membership backwards and forwards, and I know what lawyers have to do to make your case fruitful. So I can direct people, once they join, in how best to use the membership. If they want to join and take advantage of the group rate that CVC has set up for them, they can sign up with their checking or savings account or credit card, on a monthly or annual basis on the CVC website link, or go directly to http://www.legalshield. com/info/caringvoice. If they don’t have computer skills or access, I can also get them a paper application. We have a high membership retention rate, which speaks loudly for what the plan does. Since I started working with LegalShield over eleven years ago, the LegalShield plan has become more popular, because there’s more need for it. People have more questions, and they need more guidance about

things like health care reform, housing foreclosures, and bankruptcies. People also use LegalShield for advocacy, whether on a retail, billing, or debt collection issue. It can also sometimes be a maze trying to figure out when you’re entitled to certain services through government agencies, how to fill out an application, and what the rules are. I think it can really save you money, in the short and the long run. It gives you peace of mind, just knowing there’s someone in your corner, and that you have a network of legal advocates if you ever need them. The people who are involved in LegalShield are very caring people in general. I feel good when I use the attorneys myself. I feel like they actually care, and are listening. Signing up for LegalShield is not a huge financial decision, so, if it’s something that intrigues CVC patients, they should try it, and use it. They may contact me at kimberlyferris@yahoo.com or (585) 314-3111, and I am happy to assist them.

A Place to Break Free from Eating Disorders Northfield Ministries offers community support groups and a home which serves as a transitional living facility in the Virginia countryside for adult women who are struggling with eating disorders. You can help women with eating disorders by making a contribution to Northfield Ministries:

http://bit.ly/NorthfieldDonate Contact us today and see how we can make a difference in your loved one’s life. Northfield Ministries 2550 Professional Road, Ste. 200 North Chesterfield, VA 23235

 804-658-5222  www.northfieldministries.org  /NorthfieldMinistries  @Place2BreakFree 14

caringvoice.org • Fall 2014 • The Sleep Issue

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Photo: James Gathany, 2005, CDC

To Your Health CVC Senior Case Manager Lauren Ruiz explains open enrollment for health insurance, the dif ferent types of Medicare plans, and common health insurance terms.

It is possible during these enrollment periods to find good, comprehensive health coverage that doesn’t break the bank. It is also possible to make it through the entire insurance process with all of your hair still intact—you just need the right tools and preparation. Most importantly, know your options. Try not to completely dismiss the idea of a specific policy type simply because you aren’t familiar with it. Everyone has different health needs, and what works for one person may not be the best coverage for someone else. The perfect example of this can be seen through the variety of Medicare plans available.

Original Medicare is the coverage you automatically receive when you turn 65 years of age, or have been approved for Social Security Disability benefits for 29 months. Part A, hospital coverage, is provided at no cost to those who qualify and Part B, medical coverage, is available for a monthly premium. With Original Medicare, members typically pay 20 percent of the cost of most services, and prescription coverage is not included. Medicare Supplemental Plans do exactly as their name indicates; they supplement the costs left behind by Medicare. The 20 percent member responsibility is covered completely by a Supplemental Plan. Certain plans—denoted by specific letters like Plan “F”—even cover additional costs like deductibles. These policies tend to have a higher monthly premium than other Medicare options, however, so while they offer comprehensive coverage, they may not be realistic or necessary for everyone. Medicare Prescription Drug Plans, again, cover what their name suggests—prescription drugs. Typically, plans with great drug coverage are available at monthly costs under $50, and most plans follow a standard co-payment structure. If you have only Original Medicare, or Original Medicare and a Supplemental Plan, you will probably want to purchase a Prescription Plan as well. Finally, a Medicare Advantage Plan covers hospital costs, medical costs, and prescription costs, all bundled together, under one policy. The “advantage” to these plans is that the hospital and medical coverage has an associated out-of-pocket maximum, meaning once that amount is met, the member will be covered at 100 percent for those services. Different kinds of Medicare Advantage plans are available—HMO, PPO, HMO-POS and more—and each has different rules to follow, so educating yourself about common insurance jargon can help make your insurance journey easier.

Medicare Plans

Common Health Insurance Terms

Open Enrollment Details and Deadlines

Deadlines in health insurance are like your child’s first steps— you don’t want to miss them. One day could mean the difference between the effective date you want, enduring another month without insurance before your coverage starts, or losing the opportunity to enroll altogether. Annual Open Enrollment Periods exist for almost all insurance types since the enactment of the Patient’s Rights and Affordable Care Act. Applications for Medicaid are still accepted all year long, but outside of that, some important dates to remember are: January 1 – March 31; Medicare General Enrollment Period • to elect Original Medicare if your Initial Enrollment Period has already passed October 15 – December 7; Medicare Prescription Drug Plan • Open Enrollment Period to add new coverage or change your existing Prescription Drug Plan or Medicare Advantage Plan ovember 15 – February 15; Private Health Insurance Open • N Enrollment Period to elect coverage through a Federal or State Marketplace or directly from a private insurance carrier

If you’re not familiar with Medicare, there are several different types of coverage a member can purchase – Original Medicare, a Medicare Supplemental Plan (Medigap), a Medicare Advantage Plan, and a Medicare Prescription Drug Plan.

caringvoice.org • Fall 2014 • The Sleep Issue

Understanding common insurance terminology will give you the ability to make the most informed decision and will allow you to consider your coverage from every angle, so you don’t miss any important benefits. Here are some terms every insurance policy holder should know:

• S ummary of Benefits Coverage (SBC) – A document that details all the specific benefits and costs of a plan. It will detail what services are covered, what is not covered, and how much each will cost. • Deductible – The amount the member pays before coverage kicks in. All costs are paid 100 percent out-of-pocket until the deductible amount has been met. Plans may have separate health deductibles and prescription drug deductibles. • Co-payment – A flat amount the member is charged. Copayments typically vary by service, so you may have one flat charge to visit your primary care physician, another to visit a specialist, and another to visit an emergency room. • Co-insurance – The member is responsible for a percentage of the full cost of a service or medication. For example, a 20 percent co-insurance on a $400 lab test means the member will pay $80. • Out-of-Pocket Maximum (OOPmax) – The most a member will pay in co-payments and co-insurances during the year, and then the plan will cover all charges at 100 percent. There may be certain charges that do not apply to the out-of-pocket maximum. If the plan also has a deductible, check to see if it is included in the out-of-pocket maximum amount. • B enefit Maximum – A limit on the number of visits or total amount a plan will cover during the year or over the lifetime with the plan. Once the benefit maximum is met, the member will pay 100 percent of the costs for those services. • Out-of-Network – Services received from a physician or medical facility that is not contracted with your plan. You will pay more for out-of-network services, or your plan may not cover any of the costs. Most out-of-network costs will also not apply toward the deductible or OOPmax. • P rior Authorization (PA) – An approval from the insurance policy for a prescription drug before the plan will pay anything for the drug. Your prescribing doctor can submit a PA to the insurance company. • Quantity Limit (QL) – The maximum amount of a prescription drug allowed within a 30-day period. If you are prescribed more than the maximum amount, the plan will not cover the costs for the additional medication, unless the prescribing doctor submits a request to increase the QL, and it is approved. • Step Therapy (ST) – A restriction placed on a medication by the plan that requires the member to try alternate, cheaper options of a prescription drug before the plan will pay for it. If you have already tried the other drugs, and they didn’t work, or if you are on other medications that will negatively interact with the proposed alternatives, your prescribing doctor can submit a request to bypass the ST requirement. • Not on Formulary – The plan does not cover the prescription drug and will not pay for it. Your prescribing physician can

submit a Formulary Exemption request to the insurance. If it is approved, the plan will help pay for the medication. • E xplanation of Benefits (EOB) – A document the member receives from the insurance plan whenever a claim is submitted to the insurance company for payment. The EOB is not a bill, but it details how much the plan paid for a service and what the member’s cost will be. Always check the EOB to make sure you are being charged the right amount. Compare the SBC with the EOB if you are unsure, and call the insurance company if you have any questions. • H ealth Maintenance Organization (HMO) – A type of insurance policy classified by its strict network of physicians and medical facilities. A member must stay In-Network to receive coverage and may have to get a referral to see a specialist doctor. Costs are usually lower in these policies, as long as your doctors are In-Network. • P referred Provider Organization (PPO) – A type of insurance policy with no restrictions on what doctor you can see or which medical facility you can go to. There is still an In-Network list which costs less to visit, but the plan will help pay for covered services, regardless of the doctor. • Point-of-Service (POS) – A type of insurance policy that has a specific In-Network list, but will help pay for covered services submitted by any doctor, as long as that doctor will accept the rates charged by the insurance plan. If you want to visit a physician or medical facility not listed in the plan’s network, call the doctor and ask if they will accept the plan.

Record Keeping, Your Needs, and Coverage

Knowing your options and educating yourself gives you the tools— now you just need to be prepared to begin the insurance process. Keep a record of all your important insurance documents, including Letters of Creditable Coverage, Notices of Plan Termination, EOB’s, and any additional grievances, requests, or appeals that may have been filed with an insurance company. These may be vital in securing a Special Enrollment Period that falls outside of the open enrollment periods first mentioned, or in disputing a charge with your previous or existing insurance plan. Make a list of your insurance needs and what you can afford. If you receive Durable Medical Equipment (DME) for any reason, make sure you enroll in a plan that pays for DME. Include all the services and prescription drugs you know you need, as well as all additional expected services in your list. No one can predict the future, but talk to your doctors and ask if they foresee any specific upcoming procedures or prescriptions, so you can check the insurance plan for coverage of those as well. If you are thinking about switching insurance plans during an open enrollment period, or are newly eligible for coverage, call Caring Voice for assistance. We can discuss your options and make sure you have the tools and preparation to find the best coverage for your needs.

OPEN ENROLLMENT PERIODS

January 1 – March 31

October 15 – December 7

November 15 – February 15

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

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

Private Health Insurance Open Enrollment Period to elect coverage through a Federal or State Marketplace or directly from a private insurance carrier

The

Right Track

Judy Orand knew something was wrong when she fell asleep at the wheel twice and spent her days sleeping. Her determination to find answers finally led to a narcolepsy diagnosis twenty years later.

T’S HARD TO SAY WHEN I first started having symptoms. I didn’t realize it was narcolepsy. It was when my grandmother was sick, and I was working in Plainview, Texas, in 1973 and 1974. That was the worst time, because I didn’t know I had it, but Mother found out and knew I was sick, and we went all over trying to find out what was wrong with me. I was driving home after sitting up with Grandmother, and I guess I drove for 15 miles without knowing it. My headlights hitting the red triangle-warning sign behind a semi-truck parked on the side of the road woke me up. Otherwise I would have driven straight into that semi-truck. And then I had two or three more miles home. A week or two later, I was driving a car full of kids and me home, and the windshield wipers put me to sleep, and we ended up in the ditch. And I forget who walked a mile to get the neighbor's tractor to pull us out. And then I kind of skipped a little while [with the narcolepsy] being so bad. I kind of lived a different life. Then, in 1974, ‘75 and ‘76, I slept. I had a recliner I slept in in the daytime and a bed

at night, and the only other time I moved was to eat. My husband got upset about that. We lived by Scott and White Memorial Hospital, and they took us to see a famous neurologist and to a really good psychiatrist. Both of them said I had narcolepsy, but the neurologist’s test proved it. And they both gave me medication that I was on for twenty years. I was on samples while they were doing the tests, and then I was on pills after the medication came on the market. So I was on it before it was a pill. With that pill, I don’t have a problem. It gives me energy. But without it, I’m useless. I was probably a lot younger when I first had symptoms and just didn’t realize it. I wasn’t diagnosed at all until 1994. It really didn’t get bad until 1995. During that period, [my neurologist] was studying me to try and figure out what was going on, with stories from me, and my dreams. I don’t have cataplexy. I do have sleep apnea, and I can’t use a CPAP machine. I think that makes my narcolepsy worse. I have a lot of memory gaps. I have fallen asleep standing up, but luckily, I woke up before I fell.

caringvoice.org • Fall 2014 • The Sleep Issue

I always tell everybody that I grew up on the Santa Fe Railway. I spent my first seven years on my granddad’s farm. My mother and dad and I and my sisters lived in a little house my grandpa built for us. And life was good, until I was eight, and daddy took off. After that, Mother felt like she needed to get away. She was the first divorcee in town, and it was a little town. So, we took the Santa Fe to Chicago and lived first with my aunt, and then, nearby, in our own apartment. And we stayed there seven years. Every summer, I got to go home and come back by myself on the Santa Fe. The first time I went on a Pullman; after that I took coach. So, I was bigger. My grandparents got sick, and we came home. I was 16, and we came home to Lockney, Texas, out in the middle of the boondocks, in the panhandle, where my granddad had 360 irrigated acres. We thought he was poor ‘til he died, and he was a rich man. Those 360 irrigated acres were like gold. I have two beautiful boys. Randall was born in 1962, and my baby, Ron, was born in 1969. Randall lives right outside of Austin,

I was probably a lot younger when I first had symptoms and just didn’t realize it. I wasn’t diagnosed at all until 1994.”

and he’s been up a few times. Ron lives in Sioux City, Iowa, and he’s been down once. I have a cat. Her name is Ginger, and we don’t know exactly how old she is. My daughter-in-law found her as a stray. When she feels like it, she uses the commode, and when she doesn’t feel like it, she uses her box or outside. I was just thinking this morning that we’ve had that cat for 17 years. But the way she was running around, you would have thought she was two years old—a baby—not an old lady. I love my computer. I like books, but my eyes are so bad. I like TV. I like to talk. I used to garden, but I don’t do that anymore. I don’t have any time for things like that. My husband is the main purpose of my life. We met in 1993 and married in 1994. He has been supposed to be dead at least five or six times, but he keeps on living. He had a bypass. He had five stents in one day in his heart. He had his aorta replaced and another stent, and then he had his aorta stented. Then, he got a pacemaker, a defibrillator, and prostate cancer. I’ve been there since almost all of it. We’ve had tough times, but together,

Photos: Facing page, left to right: Judy Orand’s husband, Pike Orand, and sons Ron and Randall Holahan. This page, top, left to right: Judy, Ron, Pike, and Judy’s granddaughter, Kalyn. Bottom, left to right: Ron’s partner, Lisa Heinemann, Ron, Kalyn, and Judy.

we have lots of fun. It doesn’t really matter if it’s watching TV. We have to go to the doctor a lot, and he hates it, so we make a game of it. We like to eat out, because neither one of us wants to do the dishes. I love my family very much. Their support has kept me going all these years, along with great agencies like Caring Voice Coalition. It took me twenty years to get my bachelor’s degree, because I was working. I had young children, and my mother was sick. And I had to keep dropping out and starting over. It’s supposed to take two years to get a master’s. It took me three years, because I dropped out a couple of times. But with my master’s, I almost got straight A’s, with a 3.88 GPA. I got an MBA, and I’m quite proud of it. It was in 2010, and I was well into my sixties. My bachelor’s was in health care administration. I ran nursing homes. I’m a licensed Texas nursing home administrator, and I was a crisis manager. I would go into a very poorly run nursing home and turn it around in a year or so, and sit back and enjoy that for a year, and then move on to the next one. I did that for 13 years. A few times, I

just worked for a few months to just help somebody out. I enjoyed every minute of that work. I got attached, but sort of detached at the same time. You have to maintain a certain distance, but at the same, enough caring. To those who have been recently diagnosed with narcolepsy, I would say, ‘Narcolepsy is something you have to live with. It’s something you have to be aware of. It’s kind of like being a diabetic. You have to follow the doctor’s orders. You have to eat right. You have to exercise right. And take your medicine right, and you will be normal for the 24-hour period. That’s long enough to get to the next one. ‘It’s not the end of the world. It’s not as bad as a lot of things. It has no pain, unless you do like me, and fall asleep standing up, and fall, or fall asleep driving, and wreck a car. So it’s very, very important that you follow the doctor’s instructions.’ I’m pretty persistent. I knew there was something wrong, so I kept after it and kept after it, and kept asking and kept asking—until I found the right person who told me what I needed to know. 19

Timothy Morgenthaler, M.D., president of the American Academy of Sleep Medicine (AASM), and professor of medicine at Mayo Clinic, discusses sleep and chronic illnesses, including pulmonary hypertension, Huntington’s disease, and narcolepsy, and gives tips on regulating sleep, and testing for sleep disorders.

Sleep Medicine Trends and Research here’s growing public awareness of the importance of sleep. Sufficient sleep is definitely considered one of three pillars of a healthy lifestyle, as important as good nutrition and regular exercise. Public awareness is also growing of just how common sleep illness is. More than 70 million Americans suffer from a sleep problem, and over two-thirds of them have chronic sleep disorders that can actually affect their overall health. To learn more about that, sleepeducation.org is a very good site with further links to good sleep education. Along with this awareness, there’s more and more research about how important our circadian biology is in our performance

and in our quality of life, and in things like regulation of weight. I think most people are aware of our obesity epidemic, and it’s probably only been in the last few years that people are really beginning to connect the dots, that part of the obesity epidemic is the insufficient sleep epidemic. We know that there’s a tight linkage there. Obstructive sleep apnea is a serious medical illness, affecting as much as 20 percent of the Medicare-age population. Along with already existing effective treatments, new technologies are being developed to treat sleep apnea. These advancements in treatment techniques will offer more and perhaps better ways to manage this illness. Research in the pathophysiology of narcolepsy is also leading to the development of new therapies for sleep. There are advances in circadian biology, treatment of sleep-disordered breathing, diagnostic capabilities, and the neurobiology of sleep. Patients with chronic illnesses should really value their sleep. They should strive hard to achieve adequate sleep, first making sure they’re following healthy sleep habits.

caringvoice.org • Fall 2014 • The Sleep Issue

Trouble tossing and turning? Experts offer tips for getting better sleep, plus an overview of sleep disorders and sleep testing, from A to Zzzzzzzzzzz

If they are not rested, despite their best efforts, they should seek help from their physicians, and in many cases, they would benefit from referrals to a sleep specialist at an American Academy of Sleep Medicine (AASM)-accredited center. We have over eight-thousand sleep specialists in the United States. Sleep is important, and we can often help. We have very good capabilities to diagnose and treat sleep. Regulating Sleep For people both with and without chronic illness, many of the same things apply in regulating sleep. • It’s best to set a specific bed time and not really vary from that bedtime more than about 30 minutes either side of that time, from night to night, from weekday to weeknight.

There are two main forces that help us sleep. One is our circadian rhythm, and the other is sleep pressure. Circadian rhythm depends upon our brain’s internal clock, and that clock is influenced by light and by food, to a large extent.

Photo by Retroklips

PFight

illow

• It’s important that we try to keep regular schedules, with our timing of both sleep and meals, as much as possible. People should really try to set a wake time that’s 7 to 8 hours after their bedtime. And once they establish that pattern and get it worked out, they should try to adhere to that as much as possible.

• Naps are not a bad thing, but if you do take a nap, you should do it when you’re sleepy, and you should probably limit it to only 30 or 40 minutes. If need be, set an alarm clock, so that you don’t rob a lot of the sleep debt that then would allow you to sleep at night, when you were maybe preferring to sleep. The problem is when people are sleep deprived, because they haven’t allowed enough time to sleep at night, and then they sleep multiple hours during the day. When it’s time to go to bed at night, they can’t get to sleep, and that becomes a problem.

• People who exercise regularly tend to sleep better. It doesn’t mean that you have to do intense exercise, but exercise like walking or bicycling, anything that would get you moving around regularly throughout the day.

very potent drug that speeds your heart rate, raises blood pressure, and stimulates brain activity.

If you’re a regular smoker, there’s also withdrawal effect that can wake you up inappropriately and fragment your sleep, so it’s a bad substance. • Your bedroom really should be used only for sleeping, reading, and sex, not for watching a lot of television, or answering your cell phones, or for playing computer games. It should be as comfortable and dark and quiet as possible.

• A good nighttime ritual is helpful. I think, especially in people who have chronic illnesses, not uncommonly, they do have more difficulties with anxiety and depression. Taking some cognitive behavioral approaches, like learning and practicing relaxation techniques, and where

necessary, medical management of anxiety and depression, can really help people with their sleep. People should be screened for those conditions and treated appropriately for them. Seeking Treatment If even after following good sleep hygiene, you have sleep apnea, either obstructive or central, you’re still not going to sleep as well as you might, and you really should seek treatment for your sleep condition.

CONTINUED ON PAGE 22

People who exercise regularly tend to sleep better.

• Avoiding coffee, let’s say more than four hours after your wake time would be wise for people who are having hard times sleeping. • Avoid alcohol within three hours of bedtime. Alcohol can make one drowsy, but it fragments sleep, and people tend to wake up more, and sometimes have more difficulty getting a good night’s sleep.

If you tend to be hungry at night, you might try this and keep a diary, so you study what happens when you do these things to your sleep. Does it help or not? And then you can make a judgment and ask, ‘Are these extra calories that I’m taking at night worth it to me?’

• Other substances that can get in the way of sleep include tobacco, either chewing or smoking tobacco, or now, e-cigs. All of those have nicotine. Nicotine is a

Photo by Retroklips

• Try not to go to bed with a full stomach. Have your last meal three or four hours or more prior to bedtime. But there’s nothing wrong with a light snack right before bed. In fact, some people advocate light snacks of things like milk, yogurt, eggs, meat, or nuts.

Sleep Misconceptions and Sleep Deprivation The sleep misconception we hear the most that is the least true is: ‘I can get by just fine with only five or six hours, and then I make it up on the weekend.’ What most studies show about how sleep deficit affects us, is that it’s very much like alcohol, like being out with a friend who has had one drink too many, but they don’t think they have. They think they’re just fine. But you know them well, and you’re watching them, and their mental acuity, judgment, and coordination aren’t so good. Sleep deprivation is a lot like that. Studies show that we’re very poor at really detecting how our lack of sleep is affecting our performance. We don’t actually feel as sleepy as we are. We don’t realize that we’re not thinking as well as we should. What study after study shows, is that you really do need about seven hours or more of good quality sleep to be at your best. When you get less than that, you tend to crave the wrong foods, and it tends to be associated with the development of medical illnesses. It tends to decrease your cognition, reaction time, coordination, mood, and judgment. People can become very convinced that they really don’t need that. They’ll often say, ‘Well, I’ve read about people who are short sleepers.’ There are a few, very few people who can get by and not show detriments until they get quite a bit less sleep. But that’s very few people, and it would kind of be like suggesting, ‘I know people who can run the marathon in less than four hours, and so I can.’ That isn’t going to happen.

There’s also a third leg that looks at the diagnostic and therapeutic procedures. Any facility that’s accredited by the American Academy of Sleep Medicine (AASM) must follow the standards that are laid out in our treatment guidelines and practice parameters. When facilities are AASM accredited, they have to be able to demonstrate that they are already following the current practice parameters and treatment guidelines. We very tightly link accreditation with state-of-the-art practice Finally, there’s an important emphasis on quality improvement, so that they’re monitoring quality and have active programs to improve their quality. Diagnostic Testing Different diagnostic tests that might be used at a sleep center would include actigraphy, which is a way to add to a sleep diary and learn more about the sleep patterns of a patient. A polysomonogram (PSG) is typically an in-facility monitored test that measures brain waves, muscle tone, eye movements, oxygen saturation, EKG, efforts to breathe, and air flow, so it’s the most comprehensive test of sleep.

Sleep Facility and Sleep Specialist Accreditation Board certification for sleep specialists is given by the same American Board of Medical Specialties that certifies critical care medicine, pulmonary medicine, and neurology. It’s a medical specialty, like any other. Accreditation of a sleep center basically takes into account a review of the facilities. What is the physical plant of the place like? Is it safe for patients? Of the processes, are referral patterns, records, treatment pathways, and emergency procedures best practices? 22

caringvoice.org • Fall 2014 • The Sleep Issue

The multiple sleep latency test (MSLT) offers five nap opportunities during the day, and we measure how long it takes for a patient to fall asleep and what stages of sleep they fall into. The maintenance of wakefulness test (MWT) is similar to the MSLT, but kind of the opposite instructions are provided to the patient: Please stay awake in a very boring environment, and we see how effective they are with that. There can be home sleep apnea tests that are applicable to many patients who might have sleep apnea. There are blood tests that are sometimes useful in evaluating, for example, restless leg syndrome, or sometimes narcolepsy, or thyroid disease. We might look at blood tests to help us make those diagnostic assessments, and depending on the history and the presentation, we might look at other tests of cardiac and pulmonary function as well. Medication and Sleep In management of all chronic illnesses, there’s a component where you want to use lifestyle changes and non-pharmacologic approaches to the illness, and then sometimes it’s wise to add a pharmacologic component. As a sleep specialist, we use medications often to help with sleep, but you might be

Photo by Retroklips

Also, with some of these disorders, people tend to have more chronic anemia, and anemia can be associated with restless leg syndrome, which can also cause problems for sleep. That’s another sleep condition that can be appropriately diagnosed and treated, usually very effectively.

surprised. [With] many patients who come to us for insomnia, we would prefer to use cognitive behavioral type of therapies, which are actually safer, at least as effective and don’t involve controlled medications. You have to really develop a comprehensive picture of patient needs and then pull out all the tools to serve those needs. Sleep and Pulmonary Hypertension The current American College of Chest Physicians (ACCP) guidelines for evaluation and management of pulmonary hypertension strongly recommend an evaluation for sleep-disordered breathing, in particular obstructive sleep apnea syndrome, both because it can be contributory, and in severe cases, causative of pulmonary hypertension.

A good nighttime ritual is helpful. Recent literature shows a very high percentage of patients who have World Health Organization (WHO) Class 1 pulmonary hypertension have either obstructive or central sleep apnea. Furthermore, there’s really a growing body of evidence that shows that when you treat sleep apnea using positive airway pressure, not only does it treat the sleep consequences of having these sleep disorders, it also lowers the pulmonary artery pressure. What I think the new information showing a high prevalence of central sleep apnea means for patients who have significant pulmonary hypertension, is that they will be best served to be evaluated by a board-certified sleep specialist, who has significant expertise in diagnosing sleep-disordered breathing and in management with the different devices that we can use to manage

sleep apnea. People could find such specialists at an AASM-accredited sleep center, or they can look on www.sleepeducation. com, and locate sleep experts close to them. Pulmonary hypertension patients can have other sleep diseases, but they do tend to have a high prevalence of fatigue as a symptom. Fatigue management can also sometimes be helped by a sleep specialist. Sleep and Huntington’s Disease Huntington’s disease is less common than Parkinson’s or Alzheimer's or Lewy body, all of which are degenerative central nervous system (CNS) diseases. What’s come to light in recent times is how significant sleep concerns are in Huntington’s patients. They basically weren’t asked in the past. Now that they’re asked, they tell. A significant sleep problem is that their circadian rhythm gets quite upset, such that their wake and sleep patterns get very offcenter from what the rest of their community wants to obey. Given that, in some of the other diseases, like in Alzheimer’s disease, sleep issues are actually one of the primary reasons for institutionalization, it’s probably very important that we pay special attention to patients’ sleep complaints in Huntington’s disease as well. Sleep and Narcolepsy Narcolepsy is probably best managed by sleep specialists who have gone through fellowship training to learn how to manage narcolepsy and other primary CNS hypersomnias. It’s a very interesting hypersomnia that has increasingly known cause. At least at the anatomical level, we know about the hypocretin system and how that seems to be not functioning well in patients with narcolepsy. We’re still at a point where narcolepsy diagnoses rely on well-done sleep studies. We have quite a large referral for narcolepsy here at the Mayo Clinic Center for Sleep Medicine. One of the real problems is that very often people coming to us have had less than optimal diagnostic evaluations. Our current tools for diagnosing narcolepsy are sleep studies, and they involve, first of all, obtaining a very accurate history of peoples’ actual sleep patterns and how they are pursuing those, followed by an overnight polysomnogram, which is our most accurate tool for knowing exactly how that person sleeps and what sleep stages they have, followed by multiple sleep latency testing. Very often, when patients are referred to us for management of narcolepsy or

reevaluation, because something hasn’t quite worked out right, we find that the evaluation has been done inappropriately, or not very optimally. Either it was not clear what medications they were on when they were having the test, and that turns out to be very important, or it was not objectively documented what their sleep schedule was prior to the testing. There are many things that can go wrong, and in order to really orchestrate getting that test sequence done correctly, it takes work. I really think that, wherever possible, that type of diagnostic evaluation should be done at an accredited center that’s going to adhere to the guidelines and should be done very carefully. Because you are rendering a service, you hope, to a patient, and it’s one that’s going to give them a diagnosis, and it’s a chronic illness that we don’t have a cure for. You’re really committing to a lifelong management of an illness, and we should take great care to make sure we have the right diagnosis, so that our treatments make sense. Sleep and Alpha-1 Antitrypsin Deficiency Patients with advanced emphysema [such as the genetic or inherited emphysema caused by alpha-1 antitrypsin deficiency] certainly have a poor quality of sleep. They have a higher prevalence of, not only breathing problems, but also tend to have much more fragmented sleep. How much of that is due to anxiety, depression, and discomfort, I don’t think is well known, but even there, there are guidelines that can help patients with such severe emphysema sleep better.

Sleep, Childhood Epilepsies, and Pediatric Narcolepsy

Althea Robinson-Shelton, M.D., assistant professor, Neurology-Sleep Division, Vanderbilt University, discusses the relationship of sleep to childhood epilepsies and pediatric narcolepsy, testing for pediatric sleep disorders, and the importance of pediatric sleep hygiene and ritual. Pediatric Sleep Hygiene and Ritual It is important to establish a consistent sleep ritual and sleep environment for children. Starting a wind-down time before bed is a good idea. This is a time, 45 minutes to an hour before bed, when all electronics are turned off, and non-stimulating activities, such as reading, drawing or writing are done.

CONTINUED ON PAGE 24

Photo by Retroklips

Try not to go to bed with a full stomach.

‘What is bedtime? Is there a TV in the room? Are there electronics in the room?’ are just a few important sleep hygiene questions. Sleep and Pediatric Narcolepsy Narcolepsy may initially present solely with excessive daytime sleepiness. If cataplexy (loss of body tone with strong emotion) is not initially present, it may develop later. We now know that the [average] lag time from onset of symptoms to diagnosis is about eight years. Many narcolepsy patients’ symptoms started in adolescence, but they were labeled as lazy, or [told] they weren’t trying hard enough. In reality, they are trying their best to stay awake. They’re not intentionally sleeping in class or sleeping all day. It’s really difficult for them to stay awake. If your child is getting sufficient sleep, meaning they’re going to bed in a timely manner, falling asleep in a timely manner (within 30 minutes), and sleeping through the night, but they’re still having excessive daytime sleepiness, there is concern for a possible sleep disorder. It may not be narcolepsy, but narcolepsy is on the differential diagnosis. Sleep and Childhood Epilepsies Sleep and epilepsy are intertwined. Chronic sleep deprivation can lower seizure thresh24

old, which in turn can increase seizure frequency. This phenomenon can become a perpetual cycle, where chronic sleep deprivation can lead to greater seizure frequency, and an increase in seizure frequency causes sleep disruption. When a child comes in with a sleep-maintenance insomnia (they fall asleep without issue, but have difficulty maintaining sleep), there are potentially a number of causes, but if they have a history of epilepsy, nocturnal seizures may be the cause. Other disorders that can cause disruption in sleep, such as obstructive sleep apnea (OSA) and periodic limb movement disorder (PLMD), must also be considered. Parents often don’t suspect children of having OSA, or [they think] that snoring is normal. Snoring, especially when it is in association with respiratory pauses, gasping and/or choking is concerning for OSA. Untreated OSA causes sleep deprivation, which can increase seizure frequency. If a parent is concerned about a possible sleep disorder in their child, the first step is evaluation by a sleep specialist. Based on the clinical history and exam, a polysomnogram (PSG) may be recommended. If narcolepsy is in the differential diagnosis, a PSG to exclude disorders that fragment sleep (for example, OSA or PLMD) will be ordered along with a multiple sleep

caringvoice.org • Fall 2014 • The Sleep Issue

latency test (MSLT). Evaluating and treating sleep disorders in childhood improves quality of life and may improve seizure control in patients with epilepsy.

Sleep Resources www.sleepeducation.com A sleep health information resource by the American Academy of Sleep Medicine with information on AASMaccredited sleep centers, healthy sleep awareness, sleep disorders, disease management, news, a video archive and a sleep product guide.

http://nccam.nih.gov/health/tips/ sleep-disorders The National Center for Complementary and Alternative Medicine website features information about sleep disorders and complementary health approaches, including relaxation techniques, yoga and meditation. Talk to your health care providers before trying a complementary health approach for sleep problems.

Healthy Mix Health-minded superstar chefs and an award-winning dietician have created these delicious, nutritious recipes that suit a variety of patient and caregiver needs. From low-sodium, high-protein meals to low-fat, vitamin-rich dishes that can be made quickly in large portions and frozen for future use, these recipes are flavorful, fabulous and satisfying! Photo courtesy of Ceiba

Method

Photo by Helene Dujardin

ix all ingredients together in small bowl, M salt to taste. Assemble by pouring soup into 4 individual bowls. Place a generous portion of garnish in the center of each.

Chilled Pea Soup Yellow Tomato Gazpacho with Crab Garnish Jeff Tunks, Executive Chef/Co-proprietor, Ceiba, Washington, D.C. Fresh, nutritious ingredients make this gazpacho zesty, low-fat and refreshing. YIELD: Four servings Ingredients

10 each yellow tomatoes, large, cored and squared 4 each breakfast radish, roughly chopped ¼ bunch cilantro, picked leaves only 1 each English cucumber, roughly chopped 1 each jalapeno, de-seeded and roughly chopped 1 tablespoon sherry vinegar 1 whole lime, juiced, strained to remove seeds 2 tablespoons extra virgin olive oil Method

lace all ingredients, aside from oil, in P blender. Blend together until mixture is uniform in color. With blender running, slowly add oil to create a thicker texture. Salt to taste, then strain and serve. Ingredients for the Garnish

2 each yellow tomato, very small dice 2 each red tomato, very small dice 2 each breakfast radish, very small dice ½ each jalapeno, very small dice 1 teaspoon cilantro, chopped finely 4 ounces jumbo lump crab meat, picked clean of shell 1 whole lime, juiced, strained to remove seeds 1 tablespoon extra virgin olive oil

John Ondo, Chef/Owner Lana, Charleston, South Carolina Nutritious and high-fiber, this soup can easily be made in large quantities to be frozen and stored for future use. YIELD: Four to six servings Ingredients

1 tablespoon unsalted butter 1 medium leek, root trimmed [white & green only], halved lengthwise, thinly sliced 2 teaspoons kosher salt [plus more as needed] 2 ¼ cups chicken or vegetable broth teaspoon black pepper, freshly ground [plus more as needed] 16 ounce package frozen peas ¼ cup mint leaves, fresh, loosely packed [optional] 1 teaspoon lemon, juice of [more as needed] For serving crème fraîche [optional] Method

elt the butter in a medium saucepan over M medium heat until foaming. Add the leek, ½ teaspoon of the salt, and a pinch of pepper and cook, stirring occasionally, until softened, about 3 minutes. Add the broth, remaining 1 ½ teaspoons of salt and measured pepper and bring to a boil. Add the peas and bring to a boil again. Reduce the heat to medium-low and simmer about 5 minutes. Remove the pan from the heat, add the mint leaves, and stir to combine. Let sit uncovered until the flavors meld, about 10 minutes. Using a blender, purée the soup in batches until smooth, removing the small cap [the pour lid] from the blender lid and covering

the space with a kitchen towel [this allows steam to escape and prevents the blender lid from popping off]. Transfer the soup to a clean saucepan [if serving warm] or a heatproof bowl and stir in the lemon juice. Taste and season with more salt, pepper and lemon juice as needed. If serving warm, reheat over low heat. If serving cold, let cool to room temperature, cover, then refrigerate until cold. Top each serving with a dollop of crème fraîche, if desired.

Beef Braised in Beer and Onions * Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York This flavorful, filling meal is not loaded with fat or salt, but has the succulence of stew. YIELD: Eight servings Ingredients

2 pounds boneless chuck pot roast ¾ teaspoon kosher salt ½ teaspoon freshly ground black pepper 1 tablespoon all-purpose flour 2 tablespoons canola oil 4 medium onions, sliced 5 garlic cloves, 4 minced and 1 whole 1 pint dark beer 1 14 ½ ounce can low-sodium diced tomatoes ½ small onion, chopped 1 small carrot, chopped 1 stalk celery, chopped 1 small parsnip, chopped CONTINUED ON PAGE 26

1 1 1 3 -

bay leaf parsley sprig thyme sprig black peppercorns arrowroot paste (optional)

Method

reheat the oven to 350°F. Season the meat P with the salt and pepper and dredge in the flour. Heat the canola oil in a heavy Dutch oven over medium high heat. Sear both sides of the meat and set aside. Reduce heat to medium, and add the sliced onions to the Dutch oven and brown, slowly, 15 to 20 minutes. Add the minced garlic and continue to cook until the garlic is soft. Return the meat to the pan and add the beef broth, beer, and tomatoes. Cover and braise in the oven, about 1 ½ hours. Tie the whole garlic clove, the chopped onion, carrot, celery, parsnip, bay leaf, parsley, thyme, and peppercorns in cheesecloth to make a sachet and add to the stew. Allow the stew to braise until the meat is fork tender, about 30 minutes more. Cool the stew and chill overnight. Skim the solid fat off the top of the stew before rewarming to serve. (If desired, you can thicken the stew with a paste of 1 teaspoon arrowroot and 1 tablespoon water.) Note: A heavy pan is best for searing the beef. It conducts heat evenly so the food browns with less risk of burning. Start with a very hot pan and make sure the surface of the meat is dry so it does not steam in its own moisture. The meat should sizzle when it hits the pan. Do not turn it until the bottom is very well browned, which will take several minutes. You can reduce the heat slightly once the browning has started to avoid burning. This process creates deep, rich flavors in the finished dish. Photo by Phil Mansfield, Culinary Institute of America

Turkey and Sweet Potato Shepherd’s Pie * Jennifer Stack, Registered Dietician, Associate Professor The Culinary Institute of America, Hyde Park, New York These individual casseroles freeze well and reheat easily for quick, low-sodium and low-fat comfort food all year round. YIELD: Six servings Ingredients

2 medium or 1 large sweet potato (yam), peeled and cut into large chunks 1 tablespoon plus 2 teaspoons canola oil ¾ teaspoon kosher salt 1 teaspoon dried rosemary 1 teaspoon dried sage 1 tablespoon pure maple syrup 1 16-ounce can chickpeas, rinsed or 2 cups freshly cooked chickpeas 2 ½ cups plus 2 tablespoons low-sodium chicken broth 1 pound ground turkey (94 percent lean)

¼ teaspoon freshly ground black pepper 1 tablespoon Bell’s Poultry Seasoning 1 yellow onion, diced 2 parsnips, diced 8 ounces cremini mushrooms, sliced ½ cup white wine 2 tablespoons all-purpose flour ¼ cup dried cranberries, minced 1 tablespoon unsalted butter 1 tablespoon minced fresh sage leaves 2 tablespoons chopped pecans

Method

reheat the oven to 400°F. Toss the sweet potato chunks with 2 teaspoons of the canola P oil, ¼ teaspoon of the salt, the rosemary, and dried sage. Spread the sweet potato chunks onto a baking sheet and roast until very soft and lightly browned, about 45 minutes. Mash the cooked sweet potatoes with the maple syrup. Set aside and keep warm. Puree the chickpeas and ½ cup of the chicken broth in a blender or food processor. Mix with the sweet potatoes and set aside. Heat the remaining 1 tablespoon canola oil in a sautee pan over medium heat. Add the ground turkey and brown. Season with the remaining ½ teaspoon salt, the pepper, and 2 teaspoons poultry seasoning. Add the onion, parsnips, and celery once the turkey is no longer pink. Cover and sweat the vegetables until the browned bits of turkey on the bottom of the pan loosen up. Remove the turkey mixture from pan. Set aside and keep warm. Add the mushrooms to the pan and gradually add ¼ cup of the white wine to help the mushrooms sweat until soft. Allow the wine and mushroom liquid to almost evaporate. Sprinkle the mushrooms with flour and the remaining 1 teaspoon poultry seasoning. Allow the flour and mushrooms to cook slightly but do not allow to burn. Add the turkey mixture back to the pan and mix the mushrooms to combine. Add 2 cups of the chicken broth and bring to a gentle boil. Meanwhile, simmer the cranberries in the remaining ¼ cup white wine until soft, and the volume of the wine is reduced by half. Add the cranberry mixture to the turkey mixture. Put the turkey mixture in a small casserole or pie plate and spread the top with the mashed sweet potato mixture. Melt the butter and sauté the fresh sage leaves briefly to release their flavor. Whisk in the remaining 2 tablespoons chicken broth and allow to reduce slightly. Pour over the casserole and top with the pecans. Bake until mixture is hot and bubbly, about 15 minutes, and serve.

caringvoice.org • Fall 2014 • The Sleep Issue

Halibut with Vegetables * Jennifer Stack, Registered Dietician, Associate Professor The Culinary Institute of America, Hyde Park, New York Fresh herbs enhance the flavors of this quick, high-protein, low-fat and low-sodium dish. YIELD: Four servings Ingredients

1 tablespoon minced basil ½ teaspoon minced oregano 1 tablespoon plus 2 teaspoons olive oil 4 halibut filets (about 6 ounces each) ¼ teaspoon kosher salt ¼ teaspoon freshly ground black pepper ½ lemon

1 medium zucchini, sliced into ¼-inch rounds 1 yellow summer squash, sliced into ¼-inch rounds 3 plum tomatoes, peeled, seeded, and cut into large dice ½ yellow onion, diced 2 garlic cloves, sliced Method

reheat the oven to 375°F. Toss the zucchini, squash, tomatoes, onion, garlic, basil, oregP ano, and 1 tablespoon of the olive oil. Spread in a thin, even layer in a 9 by 13-inch baking dish. Place in the oven while preparing the fish. Season the fish with the salt and pepper. Heat the remaining 2 teaspoons olive oil in a large skillet over high heat. Add the fillets and sear until golden brown, 1 to 2 minutes per side. Squeeze the half lemon over the fish. Place the fillets and their juices on top of the vegetables, pouring the cooking juices over all. Continue to roast until the fish is cooked through, 5 to 10 minutes. Serve each fillet over a bed of the vegetables.

This protein- and vitamin-packed smoothie is low in sodium and high in fiber and unsaturated fats. YIELD: One serving Ingredients

1 each avocado, cubed 1 each banana, sliced 3 ounces kale or spinach roughly chopped 3 tablespoon almonds, raw and unsalted 4 each figs, dates or prunes, unsulfated and dried 4 ounces coconut water, unsweetened 1 tablespoon flax seed oil

Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York These quick treats can be made with any highprotein, high-fiber cereal. YIELD: Four servings Ingredients

Super Food Smoothie Robert Wiedmaier, Chef/Owner Marcel’s, Washington, D.C.

Chocolate Cereal Crumbles *

1 tablespoon lemon juice, freshly squeezed 3 ounces mangos, frozen 1 tablespoon chia seeds

¼ cup semisweet chocolate chips ½ cup high-protein, high-fiber cereal 2 tablespoons Spanish peanuts Method

elt the chocolate in a glass dish in the M microwave, about 1 ½ minutes. Stir and microwave an additional 20 to 30 seconds until fully melted. Stir in the cereal and peanuts and drop by the tablespoon onto parchment paper. Allow to harden at room temperature. Once the chocolate is hard, store the cereal crumbles in an airtight container for up to a week.

Method

ube the avocado and place in a standup C mixer. Slice the banana in quarters and add to the mixer. Next, rinse the kale or spinach and pat dry. Chop roughly and add, along with the figs, dates or prunes, followed by the coconut water and flax seed oil. Next, squeeze 1 tablespoon of juice from a fresh lemon and add to the mixer along with 3 ounces of frozen mangos and the chia seeds. Once all ingredients have been added, blend together until you reach a smooth consistency. Enjoy chilled or at room temperature.

*From The Diabetes-Friendly Kitchen: 125 Recipes for Creating Healthy Meals by Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, 2012, John Wiley and Sons

Legal Corner

Back to Work CVC Health Care Advocate Stephanie Posuniak explores federal programs that help those with disabilities find employment.

“

o thrive in the competitive international marketplace, employers need access to a diverse pool

of qualified job seekers. These federal grants expand that pool and show our commitment to creating career pathways and employment opportunities that result in economic self-sufficiency for people with disabilities.” – Secretary of Labor Thomas E. Perez

On May 27, 2014, the Department of Labor, through Secretary of Labor Thomas E. Perez, announced an additional $15 million in grants to state agencies to develop strategies for increasing participation of people with disabilities in the workforce through the Disability Employment Initiative (DEI). This article will discuss the DEI, along with other workforce programs available to individuals with disabilities.

Disability Employment Initiative

The Disability Employment Initiative (DEI) is a federal program created to improve education, training, and employment opportunities for individuals who are unemployed, underemployed, or receiving Social Security disability benefits. The DEI has three components: cooperative agreements, technical assistance to grantees, and evaluation of the grantees’ activities to measure outcomes. The Department of Labor’s Employment and Training Administration and Office of Disability Employment Policy jointly run the DEI, which focuses on developing programs at the state and local levels by awarding grants to state and local entities. To be eligible for a grant, the state or local entity must participate in the Social Security Administration’s Ticket to Work Program (see below). Since 2010, the Department of Labor has awarded over $81 million in grants to 26 states through the DEI. Other successes include:

▪ Increased collaboration among a variety of partners to ▪ ▪

assist individuals with disabilities in finding employment Increased accessibility to American Job Centers, which provide free help to job seekers Training for staff of American Job Centers

caringvoice.org • Fall 2014 • The Sleep Issue

(Above) Workers complete a fuselage framework for a B-17F bomber, 1942. Photo: Andreas Feininger, Library of Congress

The DEI releases grants through “rounds.” During its next round of funding, the DEI intends to award at least one grant to at least one project focusing on:

▪ Adults with disabilities, ages 18 or older; ▪ Youth with disabilities, ages 14-24; and ▪ Individuals with significant disabilities, ages 14 or older.

For more information about the DEI, see http://dei-ideas.org.

Workforce Recruitment Program

The Workforce Recruitment Program (WRP) is a federal recruitment and referral program connecting college students and recent graduates with disabilities to the workplace. The program assists students from all majors and levels, from college freshman to graduate and law students. Since its inception, over 6,000 students and recent graduates have received either temporary or permanent employment positions through the WRP. Here’s how it works: during the fall of each year, a WRP recruiter holds an on-campus-interview with potential candidates to assess the candidate’s eligibility. Eligibility criteria include:

▪ Current, full-time undergraduate or graduate student or ▪ Graduated within one year of the release of the database ▪ ▪

each December; and Have a disability; and Be a U.S. citizen.

If eligible, the WRP assists the student: Market her abilities Hone her interviewing skills Gain on-the-job knowledge, skills, and abilities

▪ ▪ ▪

If you are a student or recent graduate and interested in signing up for the WRP, contact your WRP campus coordinator during the preceding spring semester. Your campus coordinator will have specific instructions on how to proceed. During the fall, either October or November, you will have a phone interview with a WRP representative. The WRP representative then compiles the information and enters it into a database that federal hiring officials may search. Private sector employers or students interested in private sector employment can benefit from the WRP by accessing www.askEARN.org. For more information and helpful resources visit www.dol. gov/odep/wrp/Students.htm

February 12, 2014 Executive Order and Section 14(c) of the Fair Labor Standards Act

Section 14(c) of the Fair Labor Standards Act allows employers, upon authorization from the Department of Labor, to pay lessthan-minimum wages to workers who have disabilities. The justification is that the person’s earning capacity or productivity is impaired by a disability, such as blindness or cognitive impairment. Many advocacy groups argue that this law, which first appeared in the 1938, is antiquated and discriminatory. On February 12, 2014, President Obama signed an executive order that carves out an exception to Section 14(c) for federal contractors. The order essentially requires federal contractors, including workers with disabilities, be paid at least $10.10 per hour. This new wage will apply to new contracts and for replacements for contracts with an expiration date of January 1, 2015.

Ticket to Work Program and PASS

The Ticket to Work Program, administered through the Social Security Administration, allows Social Security Disability Insurance or Supplemental Security Income recipients to test whether they are able to return to work without losing their benefits. The program works by enlisting providers, called Employment Networks (ENs), to offer employment services such as career counseling, vocational rehabilitation, and job placement or training to the enrollee. The EN’s services are free of charge. If you enroll, you will be connected to an EN in your locality, which will assist you with developing an Individual Work Plan (IWP). This plan will help you identify your goals and employment needs. From there, the EN will assist with career counseling, job placement, and ongoing support.

(Above) Workers, Chrysler Corporation, Detroit Michigan, 1942. Photo: Arthur S. Siegel, Library of Congress.

While enrolled in the Ticket to Work Program, your return to work will not trigger a medical review of your claim. Further, your benefits will not stop for a time, depending on how much you are earning. A similar program specific to Supplemental Security Income recipients, is PASS, or “Plan to Achieve Self-Support.” PASS allows a beneficiary to set aside money for expenses needed to start a business, go back to school, buy equipment and tools, or transportation and uniforms, or any other type of training, items or services needed to reach a work goal. To set up a PASS, the first step is to decide on a work goal and the items or services necessary to achieve that goal. You can get help with creating a goal by contacting a PASS expert, Employment Networks involved with the Ticket to Work Program (see above), or a local Social Security office. You will then complete a PASS enrollment form (SSA-545), which you will submit to your local Social Security office. The local office will send the PASS form to an SSA employee, who will review your plan to see if the goal is practical, and the listed items are priced reasonably. If changes are needed, the PASS expert will work with you directly. For more information, see www.socialsecurity.gov/disabilityresearch/wi/pass.htm This article surveyed only a few of the many programs that allow individuals with disabilities to flourish in the workplace. These programs build upon and strengthen each other, such as the DEI bolstering the Ticket to Work Program by requiring all participating agencies to become Employment Networks. With continued participation, collaboration, and investment, these programs will continue to expand the pool of qualified job seekers for the mutual benefit of the employer and employee.

Do you have legal questions?

Send them to magazine@caringvoice.org, and we’ll answer them here.

Accessible City — Philadelphia

Philadelphia

Freedom Above: Philadelphia skyline.(Photo by M. Edlow for Visit Philadelphia™ GPTMC)

Packed with cultural, historic, and culinary attractions, 332-year-old Philadelphia, Pennsylvania, continues to make strides in accessibility for visitors and residents. Consistently ranked one of the country’s most walkable cities, curb cuts and colorful, compact neighborhoods encourage navigation by wheelchair and scooter, while leafy parks provide shaded spots for resting. We’ve highlighted some of Philadelphia’s top accessible attractions, hotels, and restaurants, as well as those in the charming, historic towns of the bordering Pennsylvania countryside.

GETTING THERE AND AROUND Philadelphia is served by Philadelphia International Airport, about seven miles from downtown, and Wilmington-Philadelphia Regional Airport, approximately 30 miles away, in New Castle, Delaware. Philadelphia International Airport offers brochures for passengers with disabilities and an Airport Autism Access Program. For more information, go to bit.ly/PhiladelphiaBrochure Wilmington-Philadelphia Regional Airport’s ground-level parking near the terminal entrance is currently free, although fees will charged as parking facilities develop. For more information, go to bit.ly/WilmingtonAir

Subway, Bus and Rail

outheastern Pennsylvania Transportation S Authority, SEPTA, serves Bucks, Chester, Delaware, Montgomery, and Philadelphia counties. All SEPTA buses and more than 100 SEPTA rail stations are accessible. SEPTA’s accessible Airport Line links Philadelphia’s Center City to Philadelphia International Airport and stops at all major terminals. For more information, go to www.septa.org/access Reduced SEPTA fares are available for passengers with disabilities. For more information, go to bit.ly/SeptaDiscount Amtrak serves two Philadelphia stations. 30th Street Station has a wheelchair lift, an accessible platform, and an accessible waiting room. North Philadelphia Station, however, does not have an elevator, a wheelchair lift, or an accessible platform. For more information, go to bit.ly/AmtrakAccessible With 20 stops in Center City, the PHLASH Visitor Bus is an accessible, inexpensive way to travel Philadelphia’s downtown loop of historic and cultural sites. A single ride pass is $2, and an all-day pass is $5. For more information, go to bit.ly/PhlashBus

PARKING hose with handicapped or disabled license T plates or placards are allowed to use the city’s metered street parking for an additional 60 minutes beyond the maximum time limit, at no additional charge. Metered parking in downtown Philadelphia is $2 an hour. Independence Visitor Center (See Attractions below) is the official visitor center for Philadelphia, Bucks, Chester, Delaware and Montgomery counties. The Independence Visitor Center underground parking garage, Autopark at Independence Mall, at 41 North 6th Street between Arch and Market Streets, costs $18 for 24 hours. (For accessible vans, note that vehicle height clearance is 6’6”.) For parking lot and garage deals, go to www. visitphilly.com/parkingdeals

interpreters upon request. For more information, go to bit.ly/IndependenceCenter or bit.ly/NationalParkMobility Benjamin Franklin Museum 317 Chestnut Street 215-965-2305 This interactive museum in the historic district,

Taxis

lthough there are currently only seven A wheelchair accessible taxis in the city, the Philadelphia Parking Authority is to add 45 more by the end of 2014, with an additional 105 to be added over the next seven years. Freedom Taxi provides wheelchair-accessible taxicabs in Philadelphia. Call 215-222-9999 or go to www.freedomtaxi.com/about-us

Attractions

Independence Visitor Center Independence National Historical Park 1 N. Independence Mall West (6th and Market Streets) 800-537-7676 I ndependence National Historical Park includes the Independence Visitor Center, the Liberty Bell Center, Independence Hall, Declaration House, Congress Museum, Benjamin Franklin Museum, and Portrait Gallery in the Second Bank. The Independence Visitor Center offers free wheelchair rentals, assisted listening devices, and sign language

caringvoice.org • Fall 2014 • The Sleep Issue

Above: Benjamin Franklin Museum. (Photo by R. Kennedy

for Visit Philadelphia™ GPTMC)

reopened last year, includes Ben Franklin artifacts and inventions, and interactive audio and video exhibitions about Franklin’s life. It also features a “ghost house”—a steel outline of the structure that was Franklin’s home, on the spot where the house once stood. The delightful Shane Confectionery candy shop and Franklin Fountain soda fountain (see Food and Drink below) are just a few blocks away. Philadelphia Museum of Art 2600 Benjamin Franklin Parkway 215-763-8100

www.philamuseum.org/accessibility Philadelphia’s best-known art museum, with more than 200 galleries, has a ramp and elevators at the main, Western entrance. Wheelchairs are available in three sizes, free of charge, as are adjustable-height canes with rubber tips. All of the museum’s sites are accessible and linked via a free, accessible museum shuttle bus. Podcasts, apps, and audio tours are also available, as are adapted guided tours by prearrangement for individuals or groups with various disabilities.

Arts Events

he arts calendar found on www.art-reach.org T lists accessible events (music, dance, opera, theater) that are open to the public, and community affairs hosted by Art-Reach partners.

FOOD AND DRINK Independence Beer Garden 100 S. Independence Mall West 215-922-7100 www.phlbeergarden.com This new, 20,000-square-foot beer garden overlooking the Liberty Bell and Independence National Historic Park serves 40 types of craft beers and an all-day menu of casual comfort food, as well as healthier options. Reading Terminal Market 51 N. 12th Street 215-922-2317 www.readingterminalmarket.org This indoor food market, packed with vendors of all stripes, first opened in 1892. Vendors, including bakers and local Amish farmers, sell cheeses, fresh produce, seafood, meats, candies, desserts, cheese steaks, pretzels, and

Above: Reading Terminal Market. (Photo by J. Smith for Visit Philadelphia™ GPTMC)

much more. Popular restaurants include an oyster bar and a diner, and purveyors of Greek, Italian, Asian, Middle Eastern, and Cajun fare do a brisk business. For gluten-free and vegan options with Indian-Pakistani flair, check out Nanee’s Kitchen. Reading Terminal Market can be crowded, especially at lunchtime during the week, but it is wheelchair accessible and well worth a visit. Weekends can be easier to navigate. Parking is $4 for two hours at two garages, with $10 minimum purchase and merchant validation. See the Reading Terminal website above for parking details.

Above: Shane Confectionery. (Photo by G. Widman for Visit Philadelphia™ GPTMC)

Shane Confectionery 110 Market Street 215-922-1048. www.shanecandies.com America’s oldest candy store, Shane Candies, was established in 1911. The staff dresses in turn-of-the-last-century garb to sell sweets, including classic homemade and imported candies, in Shane’s original building in the Old City, near many historic sites. Franklin Fountain 116 Market Street 215-627-1899 www.franklinfountain.com On the same block as Shane Confectionery, Franklin Fountain offers an updated menu in an old-fashioned soda fountain setting. Customers choose from inventive treats like “The Lightning Rod,” a sundae of dark chocolate brownie pieces, coffee ice cream, whipped cream, espresso, chocolate-covered espresso beans, white chocolate shavings, and a salty pretzel rod. (Sundaes with gluten-free brownies, and vegan and dairy-free milkshakes are available.) Franklin Fountain's accessible entrance on its Letitia Street side is by a prized Old City parking spot that is sometimes available. Granite Hill Restaurant Philadelphia Museum of Art 2601 Benjamin Franklin Parkway 215-684-7990 www.philamuseum.org/dining Philadelphia Museum of Art’s Granite Hill restaurant, in the museum’s main building, on the ground floor, features a seasonal, French-inspired menu and serves lunch, brunch and dinner.

Hotels

Radisson Blu Warwick Hotel 220 S. 17th Street 215-735-6000 www.radissonblu.com/hotel-philadelphia

I n the center of Philadelphia, near Rittenhouse Square, Radisson Blu Warwick Hotel has an entrance ramp, a large, comfortable lobby and the accessible first-floor Tavern 17 restaurant. Accessible guest rooms include those with roll-in shower, accessible controls, bathroom grab bars, and a tub transfer seat. Tavern 17 features gluten-free options, plus a canine cuisine menu. The Philadelphia Airport Marriott Hotel 1 Arrivals Road, Terminal B Philadelphia, Pennsylvania 215-492-9000 bit.ly/PhiladelphiaMarriott The Philadelphia Airport Marriott Hotel features 20 ADA-compliant rooms and is connected to the airport by a sky bridge. The hotel’s Aviation Grill restaurant is accessible, as are the main entrance, registration desk, meeting spaces, routes to accessible guest rooms and entrances to fitness and business centers.

QUICK TRIPS FROM PHILADELPHIA Towns of the Philadelphia Countryside

he Philadelphia countryside, including Bucks, T Chester, Delaware, and Montgomery Counties, all within 50 miles of Center City, is peppered with charming, historic towns. Attractions include nature trails, B&Bs, restaurants, cafes, wineries, antique shops, museums, galleries, markets, theme parks, and much more. Forty-two miles from Philadelphia, Bucks County, including the towns of New Hope, Doylestown, Langhorne, Holicong, Bristol, Lahaska, and Perkasie, is best reached by car, with New Hope an ideal base for exploring the area. New Hope Visitors Center 1 West Mechanic Street New Hope, Pennsylvania 215-862-5030 www.newhopevisitorscenter.org The accessible visitor center for the historic river town of New Hope in Bucks County is

CON TIN U ED ON PAGE 3 2

a good starting point for exploration. Built in 1839, the center served as New Hope’s first town hall, school, and jail and has recently been remodeled, with an outdoor garden area.

Hotels & B&Bs

he majority of Bucks County’s major hotels, T including the three full-service properties (Crowne Plaza Philadelphia Bucks County Hotel, Radisson Hotel Philadelphia Northeast, Sheraton Bucks County Hotel) and other selectservice properties like the Courtyard by Marriott Langhorne and SpringHill Suites Langhorne (both near Sesame Place) are accessible. Accessible Bucks County B&Bs include: Golden Plough Inn Peddler’s Village Routes 202 & 263 Lahaska, Pennsylvania (Use 2400 Street Road, New Hope, PA 18938 for GPS devices.) 215-794-4000 The newly-renovated Golden Plough Inn, in 18thcentury-style shopping town Peddler’s Village, has four accessible rooms. Peddler’s Village features 65 specialty shops and restaurants. Inn at Barley Sheaf 5281 York Road Holicong, Pennsylvania 215-794-5104 www.barleysheaf.com The Inn at Barley Sheaf is a country inn in an old farmhouse, with first-level entrances to the manor house, cottage and barn, as well as wheelchair accessible rooms. Be sure to request an accessible room when booking, as several of the suites are located upstairs or downstairs. The Inn also offers an adjoining full-service restaurant.

ATTRACTIONS

James A. Michener Art Museum 138 S. Pine Street Doylestown, Pennsylvania 215-340-9800 www.michenermuseum.org At the Michener Art Museum, spotlighting regional art and culture, all galleries and public spaces are wheelchair accessible, and service animals are welcome. See the museum’s accessibility brochure at bit.ly/MichenerBrochure for more details. Mercer Museum and Fonthill Castle 84 S. Pine Street (Mercer Museum) East Court Street & Route 313 (Fonthill Castle) Doylestown, Pennsylvania 215-345-0210 & 215-348-9461 www.mercermuseum.org The Mercer Museum and Fonthill Castle house a collection of nearly 40,000 pre-industrial era handmade items, ranging from a stage coach to folk art. The original Mercer Museum is partially accessible by elevator, and the new wing is fully accessible. Fonthill Castle has limited accessibility, but ground floor tours can be arranged. Silver Lake Nature Center 1306 Bath Road Bristol, Pennsylvania 215-785-1777

Above, lower left: Bucks County Children’s Museum. (Photo courtesy of Bucks County Children’s Museum). Above, lower right: Pearl S. Buck House. (Photo by Aaron Mitchell Photography). Top: Mercer Museum, Doylestown. (Photo by Anthony

Sinagoga Photography)

www.silverlakenaturecenter.org Silver Lake Nature Center offers a completely accessible trail specifically designed for wheelchairs, with a ramp to the platform area overlooking the lake. Sesame Place 100 Sesame Road Langhorne, Pennsylvania 215-752-7070 bit.ly/SesameGuide C hildren’s theme park Sesame Place’s website has an extensive accessibility guide. Highlights include a ride accessibility program, sign language interpretation, wheelchair rental, allergen-friendly options and more. Bucks County Children’s Museum 500 Union Square Drive New Hope, Pennsylvania 215-693-1290 http://buckskids.org The Bucks County Children’s Museum features an “Exploration For All Program Guide” to help children with autism or other disabilities prepare for their visit. For more information, go to bit.ly/BucksGuide Pearl S. Buck House 520 Dublin Road Perkasie, Pennsylvania 215-249-0100 www.pearlsbuck.org The Pearl S. Buck House and Historic Site, once

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home to the famed writer and humanitarian, offers a guide on its website to its accessible areas, as well as measurements for guests using walking aids. For those who can’t take the full tour of the house, there is an option to watch a video of the tour. For more information, go to bit.ly/PearlBuckAcccessibility

Food and Drink The Waterwheel Restaurant of Doylestown 4424 Old Easton Road Doylestown, Pennsylvania 215-345-9544 www.thewaterwheelrestaurant.com This restaurant features modern Continental fare within a former gristmill, built in the early 1700s. The first floor, featuring the main banquet and dining facilities, is wheelchair accessible. This restaurant is open for dinner only, and reservations are recommended. Nikolas at the Logan Inn 10 W. Ferry Street New Hope, Pennsylvania 215-862-2300 www.nikolasnewhope.com Nikolas offers a variety of fresh Mediterranean dishes served in one of the area’s oldest continuously operated inns. Although the inn itself is not wheelchair accessible, the restaurant is.

In Your Words Above: Sherry Gochenour and her sons (left to right) Christian, Dustin, and Josh.

On the heels of her alpha-1 antitrypsin deficiency diagnosis, Sherry Gochenour found new direction in sharing what’s she’s learned about living with the disease.

WAS WORKING AT A RESORT AROUND

February 2011, and I kept getting bronchitis, and I got pneumonia. I was going to my family doctor. He was giving me antibiotics and cough medicine and all the necessary medications to take care of it. I’d get better, and a week later, it would come back. And this went on from February to probably about the middle of April. My family doctor said, ‘Sherry, there’s something else going on here. We need to find out why you keep getting this.’ They sent me to a lung specialist at Rockingham Memorial Hospital in Harrisonburg, Virginia, and they did the blood work and X-rays. My lungs were two and a half sizes bigger than a normal person’s, and they did the Alpha-1 test, and it came back that I was a ZZ. (See sidebar, page 34)

That was May 2011, when I found out. I was in shock because I didn’t know what it was. I’d never heard of it before. When the doctor told me I had lung disease, COPD, and emphysema, I was like, ‘You’ve got to be kidding me.’ I was an athlete. I ran track in high school. I have a school record in the two mile that can never be broken, because our high school combined with another high school my last year. I played softball from the age of 12 until I was 40. I loved volleyball, and I was a big swimmer.

I was just stopped dead in my tracks. I could hardly even walk up the stairs. It was awful. There are a lot of speed bumps you have to go through with this. This disease is not known. There are no support groups around here for me. My dad was a painter, and my ex-husband was in drywall, so I was around paint and drywall dust all of the time My lungs were pretty much damaged from all the chemicals and from having pneumonia as a child. I worked at a printer; we made books. I was around a lot of paper dust that was flying around. Then, when I was diagnosed, I was cleaning condos, and you have some hardheaded people who want to mix chemicals. They were mixing bleach with other chemicals, and I would have to leave because the ammonia would get in my lungs and burn. That would hurt anybody, but it affected me twice as badly. But I wasn’t diagnosed at the time, so I wasn’t aware of the damage it was doing. The doctor put me on medical leave for about a month, right after I was diagnosed. When I started seeing the Alpha-1 doctor, they told me it was best that I did not work there, that it was not a good environment. With my disability, I don’t know what I’d do, if it weren’t for CVC and Senator Mark Warner. I went to my doctor in October 2012, and said, ‘You know the severity of my lung condition. Do you think I’m a candidate for disability?’ He said, ‘Oh, yes, by all means. CONTINUED ON PAGE 34

If you need anything, I’ll go write it out.’ I was denied twice for disability. I sent Senator Warner an email, and within three days he responded. He wrote me maybe ten letters. His office stayed in constant touch with me until I was granted. I didn’t even have to go before the judge. I don’t think Alpha-1 patients should be denied disability. I’ve wanted to write our congressman about that. If an Alpha-1 doctor says an Alpha-1 patient should get it, then we should get it. There should be no questions asked. [What I can do now] is very limited. I can go outside in the evenings after the humidity has gone and maybe water flowers and walk around in the yard. But it’s very limited. I went up

and battered that she could not find a vein. And I would break down and cry. I dreaded my infusion every week. So I went to my doctor, and I said, ‘I just can’t take it anymore. I just can’t. It’s killing me.’ He asked, ‘Why don’t you have a port?’ And I said, ‘Let’s do it.’ I had a port put in May of last year, and, believe me, I don’t mind my treatments at all anymore. It’s not pretty to look at, but you know what? I don’t care. I don’t have any pain. If I don’t have any pain, it doesn’t mean anything to me. I don’t care what people think. When they ask, ‘Ew, why is that thing sticking out of your chest?’ I don’t care. Look all

When the doctor told me I had lung disease, COPD, and emphysema, I was like, ‘You’ve got to be kidding me.’ to visit my friends, and we were sitting out on the deck, and I couldn’t breathe from being outside in the heat. I had to leave. Some people look at it as a death sentence. I don’t look at it like that. I take one day at a time, because I could go out here today and get hit by a truck. Just look forward. Don’t look back. I think the more knowledge you have about it, the better you understand. Since I found CVC and the Alpha-1 Association, I have found that there are tons of people out there like me. The [lack of] knowledge is what gets me. People say, ‘Well, what’s wrong with you?’ And I’ll tell them. [And they’ll ask] ‘Well, what’s that?’ Even doctors and nurses at the hospital do that, and they’ll write down what I have, so they can go look it up. I think that I need to give back, and I try to think of ways of doing that and helping other people. CVC opened so many doors for me. I have made a lot of friends through CVC. I’ve started my own Alpha-1 Facebook page, and I have over a hundred members now. There’s one man in particular who was diagnosed, and he’s not getting any help. I contacted him the other day, and I told him there are organizations out there that will help you. I told him about CVC. He was so happy that I contacted him about this. It feels like maybe this is my calling, to reach out to other Alphas to let them know that they’re not alone. The biggest thing for me is the love for my kids. My three boys are the most precious things to me. They’re the main reason I fight this disease so hard. When I was diagnosed, the doctor told there was a strong chance that my children were carriers. I have a 30-year-old son and a 25-year-old son. They’re very into eating right and working out. They’re both very healthy young men. My 16-year-old was diagnosed when he was 12 or 13, and he is a carrier. He’s an MZ, and he was diagnosed with asthma when he was five. (See sidebar, this page) I have gone through so much with this as far as stress. I worry, if something does happen to me, who’s going to take care of my child? I know he’s 16 now, but I’ve even said to my other sons, ‘If something happens to me, you’ve got to promise me that you’re going to take care of him.’ They’ve guaranteed to me that they will see to it that he’s taken care of. I even was at the point with mine that I dreaded my nurse coming here to do my infusions, because my veins were so scarred 34

caringvoice.org • Fall 2014 • The Sleep Issue

you want. If it’s bothering you all that badly, ask me about it. You feel like you have to explain what your disease is, because nobody’s heard of it. Not only the public, but also medical staff needs to be educated on this disease. How are they supposed to help a patient if they don’t know what they’re dealing with? Both my granddaddies supposedly died of tuberculosis. My dad’s father died when my dad was seven. My mom’s dad died when she was three weeks or three months old. My doctor now is questioning whether they died of tuberculosis. Back in the 1940s, they didn’t even know what Alpha-1 was. Our youth concern me the most. If your child is diagnosed at a young age with asthma, it could be the onset of Alpha-1. Get them tested. It can help make life longer and [them] stronger if treated at a young age. That’s why I had my son tested when I was diagnosed. He saw our Alpha-1 doctor last month—and his lungs are doing wonderfully. I went to see our doctor last month too, and he put me on a new inhaler, and I feel so much better than I did before. If anybody wants to talk, drop me a line, I’ll talk to them. And if I could say anything to other patients, it would be, ‘Never give up hope. Never give up hope. And know that you’re never alone.’

Alpha-1 Antitrypsin Deficiency Genetics

utations in the SERPINA1 gene cause alpha-1 antitrypsin deficiency. The most common version (allele) of the SERPINA1 gene, called M, produces normal levels of alpha-1 antitrypsin. Most people in the general population have two copies of the M allele (MM) in each cell. The S allele of the SERPINA1 gene produces moderately low levels of this protein, and the Z allele produces very little alpha-1 antitrypsin. Individuals with two copies of the Z allele (ZZ) in each cell are likely to have alpha-1 antitrypsin deficiency. Those with the SZ combination have an increased risk of developing lung diseases (such as emphysema), particularly if they smoke. Individuals with an MS (or SS) combination usually produce enough alpha-1 antitrypsin to protect the lungs. People with MZ alleles, however, have a slightly increased risk of impaired lung or liver function. From Genetics Home Reference, a service of the U.S. National Library of Medicine, National Institutes of Health

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

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

T he D i s e a s e s We Supp or t • Alpha-1 Antitrypsin Deficiency • Chronic Granulomatous Disease • Complex Partial Seizures • Cutaneous Lymphoma • Factor XIII Deficiency • Gaucher’s Disease • Huntington’s Disease

• Infantile Spasms • Lennox-Gastaut Syndrome • Narcolepsy • Idiopathic Pulmonary Fibrosis • Pulmonary Hypertension • Severe Chronic Pain • Thalassemia Syndromes

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