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Suer Fd and Travel Iue!

Accessible Travel Worldwide Tasty Gluten-Free Recipes from Top Chefs


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

Tips for Traveling with Chronic Illness Your Rights as a Traveler

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

We’re Here to Help.


SUMMER 2014 Food and Travel Issue



18 16

4 5 6

Contributors’ Page Editor’s Letter President’s Letter

9 CVC Close Up Creating massive neighborhood scavenger hunts with her mother sparked CVC Events Coordinator Nicole Paulsen’s love of event planning. Now, CVC patients and staff benefit from her event and conference planning passion.

13 Newsmaker Q & A Travel doctor Bradley Connor, M.D., offers tips for traveling with chronic illness.

16 Changing Lanes Mari Jackson had worked since the age of 12. Her pulmonary hypertension diagnosis at the age of 47 meant approaching life in a new way.


18 Travel Therapy More travelers with disabilities are exploring accessible travel options than ever before. Community asked experienced travelers with chronic illness and accessible travel experts what to look for and what to ask when planning a trip to help ensure the best possible experience.

26 Gluten-Free World Tour Tori Kramer, David Guas and Chris Clime are among the celebrated chefs who share their recipes for delicious gluten-free dishes with global flair.


31 Legal Corner CVC Health Care Advocate Stephanie Posuniak outlines the rights of travelers with disabilities.

33 In Your Words Huntington’s disease took Debora Camp and her husband, Stephen, by surprise. Debora was adopted and grew up unaware that Huntington’s was part of her genetic heritage. Stephen Camp tells their story.

Cover photo: Karl Gabor for Scandic Hotels. This page, right, center photo: Indian Pacific train journey across Australia, © Great Southern Rail

Staf f


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

Copyright Caring Voice Community is produced by Caring Voice Coalition, Inc. Copyright ©2014

Please recycle this issue.

Contributors Debora and Stephen Camp Debora Camp was adopted and didn’t grow up knowing that Huntington’s disease was part of her

genetic heritage. She was diagnosed in 2009 when her family doctor observed symptoms and referred her to a neurologist. A former mental health counselor, Camp enjoys hobby farming with her husband, Stephen, and is active in a women’s singing group. Chris Clime As executive chef at PassionFish restaurant, in Reston, Virginia, Chris Clime’s awareness of the demand

for gluten-free dishes was heightened when his wife was diagnosed with lupus. Clime has created a range of internationally-inspired gluten-free options for PassionFish and continues to experiment at home with different flour alternatives. Bradley A. Connor, M.D. Dr. Bradley A. Connor is medical director of the New York Center for Travel and Tropical Medicine and clinical professor of medicine at Weill Medical College of Cornell University. A consultant

to the CDC and a gastroenterologist specializing in gastroenterology and tropical medicine, Dr. Connor has been counseling travelers, including those with chronic illness, for more than 30 years. David Guas Host of the Travel Channel’s new competitive cooking show, American Grilled, Chef David Guas has won recognition and awards for his New Orleans-influenced cuisine, including being chosen as

one of the ten best pastry chefs in the country by Oprah Winfrey’s O Magazine. Guas’ Bayou Bakery, Coffee Bar & Eatery in Arlington, Virginia, has offered gluten-free items for the past two years. Mari Jackson Mari Jackson had been working since the age of 12 when she was diagnosed in 2013, at the age of 47, with pulmonary hypertension. She is active in online pulmonary hypertension support groups and lives with her husband, William, in North Carolina. Tori Kramer Tori Kramer’s celiac disease diagnosis while working in a pie shop and subsequent dismay at available

gluten-free options led her to explore making her own gluten-free meals and treats. Many of Kram-

er’s gluten-free creations are now on the menu at the award-winning Blue Duck Tavern, at the Park Hyatt, Washington, D.C., where she is pastry chef. Stephanie Posuniak CVC Health Care Advocate Stephanie Posuniak assists patients with the various stages of the Social Security disability application process. Prior to working for CVC, Posuniak was recruited by the Social Security Administration to act as a specialist in Title II of the Social Security Act. She is a member

of the Administrative Law and Regulatory Practice Section of the American Bar Association, the National Organization of Social Security Claimants’ Representatives, and the State Bar of Michigan. 4

caringvoice.org • Summer 2014 Food and Travel Issue

Community Editor‘s Letter Eva Leonard

In this issue of Community, we focus on accessible travel. Studies consistently show that well-planned travel benefits mood and that even the act of planning travel lifts spirits. Although challenges remain, there are more accessible travel options than ever before for those with disabilities and special needs, and with proper planning, the rewards can be immense. Your trip doesn’t have to involve great distances, an action-packed itinerary or

great expense. We went directly to the experts — those who travel frequently with chronic illness and those who work to make travel more accessible —for advice.

They describe how to overcome the challenges of traveling with a disability and provide strategies for ensuring that your trip is as stress-free and rewarding as possible.

They offer advice on what to ask when booking flights and hotels, making your

needs known, traveling with medical devices, and much more. We also provide

an overview of your rights as a disabled traveler and present tips from a travel doctor on traveling with chronic illness.

If you find the prospect of travel daunting, remember, many people around the

world are dedicated to making travel accessible and barrier-free, and there are tremendous resources for getting the information to plan a trip that suits your

needs and abilities. A simple change of scenery, whether it’s two or two thousand miles away, can be liberating and rejuvenating.

If you are unable to travel physically, a change of scenery can come in the form

of travel literature, which can transport you through the realm of imagination. If you’re new to the genre, some wonderfully timeless travel writers to consider

starting with include Karen Blixen, Jan Morris, Bill Bryson, and M.F.K. Fisher. Or, for a more visual experience, immerse yourself in a travel show or a travelthemed movie, and suddenly you’re canoeing in Patagonia or on safari in Kenya.

There are many ways to experience the thrill of the new. We’re here to help you

Photo by Charlie O᾽Donnell

keep exploring.


CVC President‘s Letter Pam Harris

It’s hard to believe we’re already six months into 2014. Summer is almost here, and many of us have already begun our dreams of getting away to that secluded beach or mountaintop away from home.

As many of you know, I was diagnosed with breast cancer in 2010. While I am now well, and my situation is manageable, it has changed the way I think about travel. As well as regular medication, I now need to take extra care with things I do while I travel. I also need to plan ahead a bit more than usual. So, here are a few of my tips for traveling with a chronic illness: • Notify your doctor. Check with your physician for clearance before traveling.

• Obtain the necessary paperwork to travel. (You might need a letter from your health care provider that verifies all of your medications, including oxygen.)

• Have a copy of your oxygen prescription? Carry the prescription with you. Travel personnel might ask to see it. • Keep the names and phone numbers of your health care professionals with you: your doctor, respiratory therapist, oxygen supplier, and home health care company representative, etc.

• I like a plastic ziplock bag for storing my medication. Not only is it easy to see what’s in my bag if I’m checked by security, it takes up very little space. If you check your luggage, make sure to pack your medication in your carryon bag, and bring an extra supply in case you encounter delays with your return. • Keep your medications in their original packaging. It will be easier for you should an emergency strike and you need to seek medical attention.

• If you have an injectable medication, you need to think a little differently again. You have needles and syringes to carry and dispose of. You may need to keep your medication refrigerated. If your medication requires refrigeration, check with your pharmacist about how to store it safely for your trip. Check with your airline and hotel to ensure they can accommodate your needs.

• Know your body and your disease. If you know it’s time to rest, make sure you do. If you can’t eat or do certain things, then don’t. If you feel yourself getting sick or your health deteriorating, take action early, rather than waiting until you’re really sick. That’s no fun for anyone.

Lastly, we all love to eat differently and take part in different activities when we travel. If you’re traveling, you want to have fun. If you have a chronic illness, you can still enjoy the trip, but make sure you understand what you can and can’t do, and what precautions you need to take. If you need to follow a specific diet, follow it. If you need to take precautions against the sun due to photosensitivity


caringvoice.org • Summer 2014 Food and Travel Issue

Photo by Taylor Scott

caused by your medication, slather on the SPF50, and cover up—but above all enjoy your vacation!

READERSʼ COMMENTS We’d like to hear from you! Thank you, CVC, for the approval of my new medication! Without your assistance, this would not have been possible! Looking forward to it doing wonders for me! Again, the biggest gratitude to you, Caring Voice Coalition!

Email your feedback and questions to

magazine@ caringvoice.org.

— Irasema Santos, Norwalk, California .......................................................................................................................... Thank you, Caring Voice Coalition, for helping us with the cost of my son’s medication. The process was quick, the customer service was superior, and I am one happy momma! —S.S., Herriman, Utah

SOCIAL MEDIA Join the CVC community. Get support. Meet new friends. Share your stories. www.facebook.com/CaringVoiceCoalition @CVCinc www.pinterest.com/caringvoice

CLOUD 9 CVC’s CLOUD 9 online portal is the secure, easy way for patients to: • Apply for or renew financial assistance • Update personal information • Communicate with your CVC care team To learn more, visit www.caringvoice.org.

Registering is easy! 7

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. We greatly appreciate your generosity.

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


+ Creativity

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


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 • Summer 2014 Food and Travel Issue

Close Up

Nicole Paulsen CVC Events Coordinator



the airports, accessible hotel rooms, and hotel rooms

doing event planning. My mom ran a daycare

with refrigerators for their medication. Narcolepsy

when my three older brothers and I were

patients with cataplexy need to have tubs so they

younger. We had the best childhood growing

don’t fall in the shower and hit their heads. Many of our

up. In the summers, my mom planned these

patients have to take their medication, eat, and sleep

elaborate, fun, themed events for all of the kids in our

at certain times when they’re traveling. Some have to

neighborhood. We would have “Backyard Circus Day,”

have infusions on a weekly basis and plan their travel

“Summer Olympic Challenges,” and massive scavenger

around that. Patients have to have prescriptions for

hunts on a weekly basis.

their machines and medications on them at all times

My mom now works for our county parks and recreation department, where she plans community and youth programs. Throughout high school and college, I found myself working with my mom on various youth events and summer camps and truly loved it. I love working at CVC because I get to do fun things, not only for the patients, but also for the employees. I love to plan activities that get people excited and give them something to look forward to, like monthly events for CVC staff. I also make travel arrangements for our staff to attend many of the annual patient conferences

Photo by Anthony Nesossis

and education days.

The relationships they form at patient education days and annual conferences can be even more beneficial than a typical vacation. They meet people with rare and chronic diseases who are exactly like them. It can be very comforting. When they’re first diagnosed, it can be very scary. They often tell me that their doctors don’t know anything about the disease. Going to education days and conferences can be quite meaningful to them. What I think is most important for the newly diagnosed to know, is that, when they call here, they’re not going

Speaking to patients at the conferences, I’ve learned

to be sent to a typical call center. Everyone here at

that travel with chronic conditions can be stressful.

CVC genuinely cares about what our patients are going

For them, making travel arrangements is a bit more

through and will do their absolute best to help them.

involved than for most people. They have to let the

CVC receives so many thank-you notes on a daily

airline know in advance if they’re traveling with a POC

basis. Our patients take the time to pick the cards and

or a CPAP machine and make sure it's FAA-approved.

write heartfelt thank-you notes. Reading them, you truly

Each airline has a different procedure.

understand how much of a difference we have made

Some of our patients need wheelchair assistance in


when they travel.

caringvoice.org • Summer 2013, The Healthy Eating Issue

with their quality of life, and that is very powerful.


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.

Vidara Therapeutics Inc., Roswell, GA 30076 © 2014 Vidara Therapeutics Inc. VID111301-02 All rights reserved.

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.

Vidara Therapeutics Inc., Roswell, GA 30076 © 2013 Vidara Therapeutics Inc. VID111106-01 All rights reserved.

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.

NEWSMAKER Bradley A. Connor, M.D., Medical Director, The New York Center for Travel and Tropical Medicine, Clinical Professor of Medicine, Weill Medical College of Cornell University

A consultant to the CDC and a gastroenterologist specializing in gastroenterology and tropical medicine, Dr. Bradley A. Connor has been counseling travelers for more than 30 years. Community asked Dr. Connor for his tips on traveling with chronic illness.

What do you think is important for those with chronic illness to know about travel? The ability of people with chronic illness to travel has probably never been better than it is now. The ease of travel has developed to the point where people are going to more and more exotic places because there are physicians and health professionals who specialize in health issues related to travel. Those with chronic disease can feel confident at least knowing what the risks are and taking steps to prevent them.

If your trip is for two weeks, take four weeks’ worth of medication. We’ve had patients who were stuck in Europe in 2010 when the clouds of volcanic ash from Iceland delayed fl ights. Be a little bit overprepared.

• Take your medication, in the original,

labeled container, in your carry-on luggage, never in your checked bags.

What are some general tips for those traveling with chronic illness? • Before you embark on travel — it

could be domestic travel, travel to Europe, or a more adventurous type of trip, like a safari in Africa, or travel to Asia—check with your doctor who takes care of your chronic disease and make sure it’s his or her opinion that you’re fit to travel and that your condition is in a stable place.

• If you’re traveling to an exotic des-

tination, avail yourself of travel medicine specialists who know the specific health risks. In some cases, either your own physician or a travel medicine physician might find a physician at your destination to refer you to should your illness become active when you travel.

• Preplanning is absolutely necessary.

Make sure that your medications are up to date, and that you have more than enough medication for the trip.

Above: Molokai sea cliffs, Hawaii. Photo: Hawaii Tourism Authority (HTA)/Tor Johnson

• If you need to, consult with a travel

medicine specialist if you’re going to a place with a destination-specific illness.

• Have an emergency plan in place.

What happens if your illness becomes active? What are you going to do? That could be something as simple as an email to your doctor; it could be having a doctor then referred to you at the destination.

• Post-travel, is there anything likely

that you’ve picked up on the trip that may impact your illness? What are your doctor’s assessments?

What should travelers with chronic illness know about health insurance? Check whether you do have health coverage overseas. In many cases you don’t. It’s a good idea to investigate what types of policies you can obtain for your travel in case you need to access medical care. Some might want to consider medical evacuation services. It’s not for every traveler, but sometimes it’s less expensive to contract with a company like Global Rescue or International SOS in the eventuality that you have to be evacuated back home, or somewhere you can get good medical care. The cost of a policy for a short trip is usually fairly reasonable. Some medications that are legal here are illegal in other countries. Do these issues come up for travelers with chronic illness? Those issues do come up. There are certain countries, where certain medications (in some instance, even non-prescription medications) are not permitted into the country. Now, having said that, I don’t know of any instance where a traveler with a prescription medication with a physician’s letter has been denied entrance to the country, or has had their medication confiscated. But, I think it’s something you at least need to consider. Bring a letter from your physician in case you’re questioned about your medication. In some countries, if you have a physician there who is prepared to give you the medication or prescribe it there, that’s another way around it. But that takes a lot of effort. The other issue, which is very important, is that the CONTINUED ON PAGE 14 13

world is plagued with counterfeit medications. Beware of counterfeit medications sold in other countries. If you see a drug that sells for $10,000 here selling somewhere else for $400, be careful. People should take more than enough medication and not plan on buying medication overseas.

What are some considerations when traveling with oxygen?

What are some of the precautions those who are planning to go on cruises should take? One thing they can do is to check out the medical backup at the various cruise lines. Everyone is interested in keeping passengers healthy. Some do a better job than others. There are a few cruise lines that have put a lot of effort into having excellent physicians onboard, and having excellent medical directors. With the norovirus outbreaks that you see on cruise ships, it’s not that there’s a lapse of hygiene with the cruise lines, it’s just that you have a lot of people together, and people are coming onboard with illness. Take the usual, frequent precautions for hand hygiene, like washing with soap and hot water and using hand sanitizers, and make sure the medical back up is there. Do the research.

• Check with your airline well in ad-

• If you plan on flying, ask your doctor

whether you can tolerate the reduced air pressure on a plane and if you’ll need an additional oxygen supply during the fl ight. vance of travel about regulations and methods for permitting supplemental oxygen, including the need to carry a prescription for your portable oxygen compressor, whether it’s an approved device, and whether the airline charges for providing supplemental oxygen.

• If you’re on supplemental oxygen,

make sure you have an adequate supply and that you have extra batteries for your POC in your carry-on luggage.

• If you’re going to a destination with

high altitude, it’s important to let your physician know. Discuss with your doctor what effects altitude might have on your illness and on the delivery of oxygen.

Below: Le Train Bleu, restaurant Gare de Lyon, Paris. © Paris Tourist Offi ce. Photo by Amelie Dupont. Right: Via Rail Canada, Toronto-Vancouver route. Photo by Bianca Courtemanche


caringvoice.org • Summer 2014 Food and Travel Issue

What would you say to those with chronic illness who want to travel, but are afraid? With proper planning, some of the perceived restrictions of traveling don’t have to be. Use your doctor as a partner. Use specialists in travel medicine if need be. Have an escape plan in place if you get sick. Don’t leave anything to chance. If you’re new to traveling with chronic illness, take an easy trip fi rst. See that you can do it. Then, maybe for your next trip, you can be a little more adventurous. Done the right way, with a lot of preplanning, you don’t have to fear travel. If you’re suffering with a chronic illness, travel can be very enlightening and it can be uplifting psychologically.

Q&A Community recently spoke with Gwen Seiler, founder of the awardwinning non-profit organization, Northfield Ministries, about Northfield’s programs and services for women with eating disorders and their loved ones.

What is Northfield’s goal? Our goal is to be a safe haven, a place of healing, renewal and peace that gives women freedom from eating disorders, self-harm and depression, and offers hope, within a conservative, goal-oriented environment. Northfield’s programs address healing of the whole person — body, mind and spirit— from the inside out. Northfield’s Cumberland Home is an historic 10,000-square-foot home, beautifully decorated with custom-made furnishings, on 49 acres in the Cumberland, Virginia countryside. This idyllic setting allows us to encourage the women we help to feel special and valuable and recognize their gifts, talents and individual personalities. What kind of support and services does Northfield offer? Northfield offers both residential and community-based programs and services. Our residential program provides transitional living in a serene, structured and nurturing environment, with supervision by caring staff to help ease residents back into independent living and promote health self-care. We offer one-on-one mentoring and group sessions, family support and coaching, working through a recovery curriculum that is biblically based, with an emphasis on discerning between truth and eating-disordered thoughts. We take residents off-site to therapeutic appointments with licensed counselors, doctors, and nutritionists, and as a member of the team, Northfield helps support follow-

through with meeting goals one-on-one and in support groups. Activities to encourage positive change include equine learning, gardening, art and culinary classes, and life skills training, such as learning how to balance a checkbook,

You can help women with eating disorders by making a contribution to Northfield Ministries NOW: www.northfieldministries.org/ fundraisers/sponsor-donations

Top: Gwen Seiler. Above: Northfield’s Cumberland Home. Photos by Anthony Nesossis

apply for jobs, and look for apartments. Our outpatient program helps women of all ages realize goals and exchange disordered thinking patterns for thoughts that promote life and wellbeing. It includes a Finding Balance gathering group and intensive Retreat for Recovery programs, as well as advice and counsel on recovery resources and services available locally, regionally and nationally. What do you think is most important for those with eating disorders and their loved ones to know? Ignoring it will not make it go away. If someone you love is deteriorating, be supportive and encourage them to get help. It is difficult to reason with someone who is trapped in eating-disordered thoughts. Recognize that others in the family may need counseling during this time, as this can be stressful for the entire family. Family members’ number one fear is that they’re going to lose the person they love. Anorexia has the highest mortality rate of all mental illnesses. There are often co-existing diagnoses of anxiety, depression, OCD, PTSD, and sometimes a history of drug or alcohol abuse. Women with eating disorders can feel isolated and lonely, like an island. They are often unable to turn their lives around by themselves. Only one in 10 of those suffering with an eating disorder receives the help they need, often because it is cost-prohibitive. The daily rate at Northfield’s Cumberland Home is onetenth the cost of for-profit programs, and a sliding scale is available.



Photo by Anthony Nesossis


Mari Jackson and her husband, William.

48-year-old Mari Jackson had worked since the age of 12. But last year, a diagnosis of pulmonary arterial hypertension forced her to slow down and approach life differently.


GOT DIAGNOSED WITH pulmonary hypertension last March. The symptoms started in February of last year, right around my husband’s birthday. It was like something out of the blue. We had gone to dinner to celebrate his birthday and came home, and I said, “I’m going to get ready for work.” I went upstairs to take a shower, and when I got off the bed to walk towards the bathroom, I just blacked out. When I woke up, I was on the floor, and I was face down by the sink. I called my husband, and he and my son came running up the stairs, and my husband said, “What are you doing on the floor?” I said, “I have no idea. I just blacked out.” My body had just shut down. I was so embarrassed. But I didn’t pay it any attention. I worked for a mortgage company. Believe it or not, Monday through Friday, I drove every day


to work— 44 miles round trip. I worked anywhere from 10 to 12 hours a day, and I worked weekends and overtime. I had an episode every weekend. I would pass out. I actually had a seizure one night. My husband noticed that every time I would go upstairs, I would get really, really lightheaded and either fall backwards or lose my balance. So, one night he came upstairs with me and said, “Let me just help you into the room.” I was using the bathroom, and I was sliding off the seat. I had a seizure, and he was right there to catch me, and I bit my tongue, and it was so weird because I had never had that happen. He took me to the ER, and they ran a lot of tests. They said, “We don’t see anything, but we do see that you have pneumonia.” So, they gave me antibiotics for that, and I went home. The fi rst Saturday in March, I went to

caringvoice.org • Summer 2014 Food and Travel Issue

work. I got upset about something, and the whole left side of my arm turned ice cold. It was numb, and I kept shaking it. Then, I started sweating. I told my manager, “I’m going home. I’m not going to be able to stay.” My manager said, “You don’t look well,” and he called my husband. My husband came and got me and took me to the emergency room. My blood pressure was 280 over 190. They said, “You’re not going anywhere, so get comfortable.” I ended up having to be admitted. They ran some more tests, and I stayed there for a week. They did a lung biopsy, and then a right heart catheter. They did a crash blood pressure drop on me, and they would give me blood pressure medication three times a day. I felt like somebody was coming in and beating me. I said, “Why do I feel this way?” They said, “We have to get your blood pressure

down.” I had no idea, because my pressure was always high. Once I got all the test results back, I met with my pulmonologist. He told me I had pulmonary arterial hypertension, that basically, my heart and lungs are not friends right now. I had no idea that my life was going to change. I was devastated. I wanted to go back to work. And I couldn’t. I couldn’t even go up the stairs in my house. I either stayed upstairs or downstairs. To walk from my kitchen to my bathroom, I was gassed out. If I got up too fast, I fell out. If I dropped my head too long to tie my shoe, I passed out. I couldn’t understand it. I got mad. I questioned myself. I questioned God, and I know that wasn’t the right thing to do, but I didn’t

I was a little girl, but I only had one flare up as an adult. PAH hides behind asthma, and then it explodes all of the sudden. People with asthma have to be very careful and have things checked out extensively. There were no gradual signs. Every time I would go to the doctor, my blood pressure would be high, and they would ask, “Do you have high blood pressure in your family?” And I would say, “Yes.” And they would ask, “Well, how do you feel?” And I would say, “I feel fine.” But passing out and having seizures, never had I experienced that before. I was going through my own thing. I didn’t really want to talk to people, because I couldn’t talk. I was gassing out. The longer I talked, the worse it got. You

I looked around and thought, ‘How did I end up on the floor?’ My head was hurting and had a knot. I had hit my head on the sink counter. When I looked at the sink counter, I saw my head print, because of the makeup. know what else to do. I wanted answers. I prayed for understanding. Then I just started learning. I got on the websites and started learning about PH. There were things I had to do differently. I was confined to my room for six weeks because I couldn’t go up and down the stairs. I had to sit on the stairs and go up backwards. I was a very independent person. Then to have to rely on someone to cook me breakfast, to get me water, I thought, ‘This is unreal.’ I had to reform my thinking. My doctor told me I had to lose weight. And I thought, ‘Well, how is that going to happen if I can’t exercise?’ So I had to learn how to cut back on carbs, sodium, and to fall in love with water. I was 325 pounds, and now I’m 260, and I feel much better than I did a year ago. My doctor actually told me last week, “Compared to how you were last year, you would have never known.” It just happened. I have had asthma since

could hear I was struggling to talk. Last year, I was in a wheelchair. I was scared, because you read things on the internet about your life expectancy. Then you read about all the new medications that have been FDA-approved. You’re hoping and praying that one of those will work for you. This year is like a complete turnaround. I have a lot to be thankful for. I’m able to walk distances at my own pace. I still use a wheelchair in big places. I don’t do the mall. I get anxiety around a lot of people, because I feel like, if something happens, I’m not going to be able to get out. I try not to go to a lot of places by myself, and if I go somewhere by myself, I let someone know where I am. I have a Life Alert. When I walk, I do so at my own pace. If I get tired, I stop. I do all right. [Recently] I went to the doctor by myself. I walked in on my own. But I took my time. I can’t work anymore — that was the biggest thing. My husband’s work is seasonal. Financially it’s very hard. So, I communi-

cate a lot with other PAH patients. I’m on the website with them. I try to get other ideas from people about what they’re doing. If I could do volunteer work, that would be good. It’s difficult, because I like working with people with disabilities. But I have to be real cautious about my surroundings. If I catch something, I can’t take anything over the counter. I have two grown children; they’re 20 and 27. My husband has five. I have four grandchildren who live in Washington, D.C. Last year I couldn’t travel because I was sick. Maybe this year, if the weather and my health permit, we’ll take a little road trip to see them. My parents live in Seattle, but I can’t really visit them because of the altitude of a flight. My youngest son was here for a year, and he was very helpful, but at the same time, he was a teenager, and I didn’t want him to be stuck in the house with me all summer. He ended up going back to California. I’ve been working ever since I was 12. I don’t know what a hobby is. After I had kids, I went right back into the workplace. I have a friend, and we’ll get together and have lunch once a month, and it’s nice. I do like to read. I like romance novels. I really got into talking with other people with PAH in my area. I want to look into a chapter here in Charlotte. Maybe I could do something with them. My husband was and still is a very big part of my healing process. He always makes sure that my needs are taken care of, no matter what, even cooking dinner after working an eight-hour day. I really do appreciate my husband, and I thank God for him. To the newly diagnosed, I would say, “It’s going to work out. Don’t get upset, because being upset starts a lot of things, like stress.” I still do that, but I really try not to. Sometimes I think, ‘What if this gets turned off? What if I lose my house?’ I realized when I was doing that, it was making me worse. I went through a point where I didn’t want to be bothered with anybody. I was mad. I thought, ‘Why can’t I work?’ I thought my life was done. Now, I just take everything one day at a time. I don’t let anything bother me. I keep it moving. I want to be able to grab, absorb and use everything you give me to the best of my abilities. I still call myself a newbie. To the newly diagnosed I would say, “Life still goes on. It’s just that you have to take it slow. It’s about you. Nobody else. That’s how it is.” 17

Photo by Hawaii Tourism Authority (HTA)/Tor Johnson.

Those with chronic conditions and limited mobility have more options than ever before for accessible travel. Eva Leonard talks to travelers with special needs and accessible travel experts about important considerations when planning a trip.

Travel Therapy

Canoe coming into shore, Waikiki, Oahu, Hawaii.


ART OF MY JOB IS TO make vacation travel possible,” says Royal Caribbean International Manager, Access Compliance, Ron Pettit. “Many people with disabilities don’t think about traveling or taking a vacation as an option. “They have challenges in everyday life; getting out of bed, getting out of the house, going to school, to work, going shopping, and going to the doctor. So sometimes, when they think of all their daily challenges, they think, ‘Oh my goodness —I don’t think I could go on a cruise.’ “Some folks are born with a disability, so they’ve learned how to adapt all along. But a lot of people have acquired a disability with age, or a medical issue, so they have to rethink and learn things all over again.” Fear of the unknown can be a factor in deterring those with chronic illness from traveling, says Pettit, who has worked for the past 25 years to improve travel for the disabled, first for 17 years at Northwest Airlines, where he served as program manager for customers with disabilities, then joining Royal Caribbean in 2006. “It’s those personal issues. ‘How do I go to the bathroom? How do I know about oxygen? How do I do these things?’ Because, while they have learned to adapt at home, or maybe when going out a little bit, the thought of going onto an airplane, or going onto a ship seems a little daunting. They ask, ‘How would I ever do this with my new limitations?’” But many with disabilities are traveling. 18

The U.S. Census reports that more than 38 million Americans live with disabilities, and, according to a 2005 study by the Open Doors Organization and the Travel Industry Association of America, U.S. adults with disabilities or reduced mobility spend around $13.6 billion on travel every year. With the world’s population now at 7 billion, about ten percent require barrierfree and easily accessible facilities. “Global estimates [of people with disabilities] range from 600 million to 900 million,” says Lilian Muller, President of the European Network for Accessible Tourism. To meet rising demand, accessible and barrier-free travel options have grown dramatically over the last two decades. Whether you opt for a leisurely Caribbean cruise, a scenic train ride through the Canadian Rockies, or something more distant and action-packed, careful research, planning and preparation can help you decide which getaway is best for you and allow you to fully enjoy the mood-boosting, stress-reducing rewards of travel.


efore you start planning your trip, check B with your doctor to assess what you can do, and, depending on the type of trip you plan to take, consider working with a travel agent who understands your needs. Says Pettit, “The more information you can share about your ability and needs, the better.” Make arrangements well in advance for wheelchair, scooter, and medical device and supply accessibility and rental. Says traveler

caringvoice.org • Summer 2014 Food and Travel Issue

Tracy Schutt, “Since being on oxygen 24/7, traveling has become challenging, but not impossible. Making trips to Jacksonville, Florida, to visit family requires preplanning with my home care company to have oxygen supplies waiting when I get there.” Another traveler with pulmonary hypertension suggests sending IV medication and supplies ahead by overnight service and arranging for an oxygen concentrator, so that all are in place on arrival. Traveler Milli Washock advises, “Have a sheet handy with all pertinent medical information, medication, supplies and emergency contacts. Being on [intravenous infusion] therapy and oxygen, I have written on top [in big, bold letters], ‘Do Not Stop Pump.’ And, she adds, for devices that must be charged or plugged in, “When traveling to a foreign country, be sure to have the proper electrical adapters.” It’s also important to get as much information as possible in advance about the availability of services you might need en route and at your destination. For example, find out what airline, hotel, rail, or cruise staff can assist you with when traveling, and if there is a medical facility specializing in your condition at your destination. If you’re planning a cruise, ask what types of onboard medical services are available, and if there is a fee.


writer Candy Harrington has T ravel been covering accessible travel for the

Scandic Hotels height-adjustable bed

Benchmark’s Turtle Bay resort on Oahu’s North Shore features 15 ADA-compliant guest rooms and one ADA-compliant cottage. Other accessible features include the resort’s swimming pools, hot tubs, fitness center, spa, restaurants, lounges, and a wideopen door-less gateway entrance.


Magnus Berglund Accessibility Director, Scandic Hotels

Photo by Karl Gabor for Scandic Hotels.

past 16 years and has authored books on the topic, including, Barrier-Free Travel; A Nuts and Bolts Guide for Wheelers and Slow Walkers. She also writes the barrier-free travel blog www.BarrierFreeTravels.com. Harrington advises travelers with special needs to be very specific about their needs and ask detailed questions when booking a hotel room. “First and foremost,” she emphasizes, “you have to understand that there are many types of accessible rooms, so you have to ask for an accessible room with the features you need. Don’t just ask for an accessible or an ‘ADAcompliant’ room. “If you need a roll-in shower, specify that, because all accessible rooms do not have rollin showers—some have tub/shower combinations. If you need the toilet grab bars on a specific side, you need to specify that too. “And if bed height is an issue for you, inquire about that also. Bed height is not covered under the Americans with Disabilities Act (ADA), and you could very well end up with a 32-inch-high bed, which would make transfers very challenging. “Don’t assume that the accessible hotel room is going to have the exact same features that your own home has, because in most cases, it won’t. Ask a lot of questions to make sure you get the access features you need.” Some hotels are more accessible than others, and good indicators of their commitment can often be found online. Benchmark Resorts & Hotels comprises 13 properties across the United States, and the company’s website promotes Benchmark’s commitment to ADA compliance, with detailed accessibility information for each property.


TOCKHOLM-BASED SCANDIC HOTELS, WITH NEARLY 230 PROPERTIES throughout Northern Europe, has won awards for its hotels’ accessible features, such as a minimum of two cane holders attached to the front desk, carpet-free meeting rooms and height-adjustable beds. In consultation with disability organizations, hotel guests, and team members, Scandic Hotels drew up an accessibility standard in 2003 that works as a checklist and template for the hotels. The standard has grown over the years, and today it contains 110 checkpoints to follow. Eighty-one of these points are mandatory for all hotels, and for new hotels, all points must be considered. Community spoke with Magnus Berglund, Scandic’s accessibility director, about his work with Scandic and how his service dog, Dixi, helps him throughout the day. How did you first become involved with Scandic Hotels? It started about ten years ago, when I was a cook at Scandic Hotels. Due to a muscle disease, I was on sick leave for five years. When I was able to start work again, I contacted my former employer, with my ideas on how the hotel chain could increase accessibility and use accessibility to gain competitive advantage. In 2003, I was appointed disability ambassador for Scandic Hotels. What is a typical day like for you as Scandic’s director of accessibility? I work with all departments at head office, on everything from new hotels to renovations. I consult with Scandic’s hotel designers on accessibility, and I’m also involved with employee education within Scandic. I travel a lot, often several times a week, when I visit any of our hotels or when I’m invited as a speaker around the world. Dixi is a service dog that helps me with everything from getting my clothes to the bed in the morning to picking up things that I drop. She also carries my computer bag when I’m flying, and she follows me on all my trips. Basically, she follows me everywhere I go in my daily work, at the office, at conferences, when I’m invited as a speaker, and so on. What are some of Scandic Hotels’ smart design features? A really smart design feature is our cane holder at the reception desk. We also have our vibrating alarm clock that the guest puts under the pillow, so if you’re hearingimpaired, the clock will wake you up so you “hear” the fire alarm. We also have special bread for breakfast for guests who have gluten or lactose intolerance. What are some of the barriers that travelers with disabilities encounter most often when they travel? I think it’s extremely different [depending on] what kinds of special needs people have. The big challenge is to get the right information. For more information on Scandic Hotels, go to www.scandichotels.com/Always-at-Scandic/Special-needs


Above: ADA-compliant pool, Benchmark’s Turtle Bay Resort, Oahu, Hawaii. Left: Roll-in shower, Benchmark’s Costa d’Este Beach Resort, Vero Beach, Florida. (Photos courtesy of Benchmark Hotels & Resorts) Bottom: Royal Caribbean’s Brilliance, Dubrovnik, Croatia. (Photo courtesy of Royal Caribbean)

A video on Turtle Bay’s website features paraplegic surfer Jess Billauer, founder of the Life Rolls on Foundation, dedicated to improving the quality of life for young people affected by spinal cord injury, as he easily wheels through the resort, surfs with an adaptive electric surf board and describes the independence that accessibility brings. “We do everything possible to make sure everything is accessible,” says Gary Harnist, vice president of construction and design for Benchmark. “ADA guest rooms at Turtle Bay have automatic doors. The peepholes are lower. Bathrooms have roll-in showers, and shower, temperature and lighting controls are at a reachable height. We want to make sure the balconies are accessible, so we have sliding glass doors and ramps.” Harnist advises, “Ask questions before you arrive. Let us know what your needs are. Many times we’ve sent staff members to the store to buy a lower shower seat, or called a rental company to get the kind of wheelchair a guest needs to insure that their stay is perfect.” For more information about Benchmark Resorts & Hotels, go to www.benchmarkresortsandhotels.com/about/social_responsibility/ada_accessibility_compliance As with hotels and resorts, when planning a trip to a theme park, checking in advance for clarity on accessibility and disability policies can be a good idea. Walt Disney World and Disneyland Resorts made headlines in October when it replaced its Guest Assistance Card (GAS) program with a Disability Access Service Card (DAS). A DisneyParks blog post by Thomas Smith, social media director, Disney Parks, explains that guests with disabilities can now “request a DAS at Guest Relations and receive a return time for attractions based on the current wait time.” Prior to the change, which Smith said was prompted by abuse of the program, guests with disabilities had been able to go directly to the front of the lines for Disney attractions. For more information on Walt Disney World and Disneyland Resorts, go to http://disneyparks.disney.go.com


recent study by the Open Doors A Organization and the U.S. Travel Association found that 12 percent of

Americans with disabilities have taken a cruise in the last five years. “Cruises are great for people who need to move slowly and take their time. You can be as active as you want and do everything, or you can do as little as you want, have a nice


caringvoice.org • Summer 2014 Food and Travel Issue

Royal Caribbean’s Quantum of the Seas accessible balcony stateroom. (Photo courtesy of Royal Caribbean)

spot in the lounge and watch the sea,” says Royal Caribbean’s Pettit. “We’ve designed our cruise ships to be very accessible, so there are elevators, ramps, and platform lifts. We have options all over the ship for guests with limited mobility.” Travel agents can be helpful in sorting out accessible cruise options. Says Pettit, “If you’ve never cruised before, you don’t know the questions to ask, and that’s why we recommend using a travel agent. “There are travel agents who specialize in accessible cruises and in specific conditions. Some specialize in dialysis cruises, autism cruises, deaf cruises, blind cruises, and disability in general, and not just group cruises. They deal with individuals or families. They specialize, may have the disability themselves, and know the questions to ask. They can help walk you through making an informed decision about the right cruise line and cruise for you.” Says traveler Milli Washock, “A few years ago, I went on a weekend cruise, with a wheelchair, room air concentrator, oxygen tanks, a portable concentrator and a BIPAP, and did quite well. The cruise line, Carnival, went out of their way to bring me [my oxygen] tanks wherever I was and made sure everything was taken care of in the cabin and with shows and dining. They even had distilled bottled water. We had a great time.” For those cruising for the first time, Washock suggests, “Book a room with open air, a window and/or a balcony, and liberally use hand sanitizer everywhere.” Says Pettit, “Oxygen has changed over the years. What works well for a lot of people now is the new portable oxygen concentrator, what I call’ the magic box.’ It takes

ambient air and turns it into breathable oxygen on demand. “This works well for many people who require oxygen therapy. It may not work for everyone. Some people need continuous air flow. They may need a flow rate that’s higher than what the portable concentrators can give. But for many, many people, portable oxygen concentrators have been revolutionary. “Portable oxygen concentrators allow passengers to use the same equipment in the plane, on the ground, and on the cruise

Travel agents can be helpful in sorting out accessible cruise options. ships. We have power outlets in our staterooms, so passengers can charge overnight, and they can bring extra batteries as well. “Technology and the ability of our staff to assist our guests go a long way to help [those with special needs] think about cruising as a possibility. We provide our staff with sensitivity training and technical training, primarily for wheelchair assistance and assisting guests on and off the ship. That’s the number one request that we get. “We provide training about different types of disabilities and how to communicate with different types of guests. We focus primarily on people with mobility, hearing, and visual disabilities, but we do talk about guests with cognitive or developmental disabilities.

“From an identification perspective, there’s always the question of dignity in providing too much information. The more information we have, the more we can assist you. If we don’t understand your condition, we may provide inappropriate support. If we know ahead of time, it makes things easier.” In February, Royal Caribbean was the first cruise line to be named as autism-friendly by Autism on the Seas, a agency that develops cruise vacation services for those with children with special needs. Says Pettit, “Our products and services are accessible for guests with autism and other developmental disabilities. We have priority check in, boarding, departure, and special dietary offerings like gluten-free items. We offer modifications to our youth program onboard, like dropping down an age group if the child would be more comfortable, based on ability. “We offer autism-friendly movies: The sound is not so loud, the lighting is a little bit lighter, and the kids are encouraged to get up and walk around during the movies. We added a social story to help families dealing with autism prepare for their cruise. Often children with autism need a little structure and preparation, [so we let them know that] when you get to the ship, this is what you’re going to see and this is what you’re going to do, so they can prepare. And really, it’s about the entire family and not just children. Many of our features are used by teens and adults with autism. “Everybody is different. Their needs are going to be different. We can work with our guests and our travel agents to see if we can help accommodate that need. A lot of our business continues to be booked through CONTINUED ON PAGE 22


travel agents. For many people, it’s their first time, or they may have special needs. You may need a little additional help from an expert. It makes for a much better cruise experience.” Royal Caribbean’s Access Department is a resource center for guests and travel agents. Staff can answer questions about accommodations for guests with disabilities and can be reached at 866-592-7225 (phone); 954-628-9708 (local); 954-628-9622 (fax) or email special_needs@ rccl.com. Or for more information, go to www. RoyalCaribbean.com/AccessibleSeas


ettit says that cruises that involve the P United States are often preferable for those in wheelchairs or those who need

to move slowly. “Alaska, Hawaii, New England, and Western Pacific coastal cruises are all great options, simply because they involve U.S. ports of call, and, generally, when you’re within the U.S., you have a much better sense of accessibility. “There are curb cuts. There are accessible restrooms and facilities. Whenever you get outside of the U.S., while there are accessibility regulations in place, they may not always meet the same level as in the U.S.” “The Caribbean has mixed levels of accessibility. We’ve seen progress over the years in many of our ports of call. People tend to gravitate to the Eastern Caribbean itineraries more because more of the ports of call are docked—that means you can roll on and roll off the ship with ease. When you get to the Western Caribbean, you have more ports that are tender,” says Pettit. “We sail to more than 300 ports of call around the world, and about one third of those ports are tender. What that means is that our ships cannot dock at a pier. They have to anchor in the harbor, and so we transfer guests onto a smaller vessel, usually called a tender. They take that tender to the port and get off there. That process may pose some challenges for guests in wheelchairs and those who have difficulty walking. “Our larger ships, like Oasis of the Seas and Allure of the Seas, are great ships for guests in wheelchairs and those with difficulty walking, because they never have to tender. They always dock.” Bob Curley, Caribbean travel expert for About.com, notes that the U.S. Virgin Islands must comply with the ADA and that “Barbados has also made a pretty concerted effort to be compliant, as have Aruba and St. Maarten. Every cruise port in Jamaica is a nontender port, and St. Thomas also has a dock.” 22

Says Pettit, “Europe is becoming increasingly accessible, although it’s mixed. A lot of our ships sail there in the summer. There are cobblestone streets, and there may not always be curb cuts. The buildings are older, so they might not always have the wider doors and accessible restrooms. It does require that our guests and our travel agents research the different ports of call to see which ones are more suited than others. “The Mediterranean is increasingly becoming more accessible, and the more northern and the western you go, it gets more accessible. When you look at bigger ports, especially those that have hosted the Olympics, because they hold the Paralympics, they have increased accessibility over the years. “Athens and Barcelona are recent examples, so they may have more accessible taxis and motor coaches and overall facilities for people in wheelchairs. You go to some of the smaller ports, like Santorini, and the island ports, and there are mixed levels of accessibility. “The challenge we get with different ports of call is usually with accessible vehicles; if a guest has some ability, or a caregiver who can assist them into a regular taxi, or they can go up a few steps into the motor coach, more options become available.” To improve accessibility for guests with more limited mobility, Pettit says that, in Europe, Royal Caribbean has created Easy Tour s — a modified version of the cruise line’s panoramic city tours. “It’s a narrated ride throughout the city on a bus, with a couple of opportunities to get off to look around. These have a motor coach with a lift, or, more often in Europe, a van with a ramp in the back. These are in about 80 ports and are a great option for

caringvoice.org • Summer 2014 Food and Travel Issue

guests in wheelchairs or scooters, who have limited capability.”


ail travel has its advantages for those R with chronic conditions and medical devices, and train trips throughout the U.S.

and Canada can be a good place to start. Says traveler Milli Washock, “I always used to find a plug at the gate [at the airport] for last-minute charging, but I don’t fly anymore. Traveling [domestically] by train is easier in that there is a plug by every seat. It takes longer, but you have a bigger selection on dining and with movies if you plug in your laptop or device.” With input from disability advocacy organizations, over the past five years, Amtrak has made accessibility improvements at more than 200 stations. All Amtrak trains have accessible seating and restrooms, and all longdistance trains have accessible bedrooms. Amtrak also offers a discount to passengers with disabilities and their companions. For more information, go to www.amtrak. com/accessible-travel-services. Other countries have also made recent improvements in rail travel accessibility. Australia, for example, offers a host of services and special deals to meet the needs of travelers with disabilities, including accessible services in most of its trains. For more information, go to www.australiaforall.com But accessible international rail travel might be even closer than you think. “We are more accessible than flying or taking the bus,” says Jacques Gagnon, senior manager, media and community relations for Via Rail Canada, Canada’s national passenger rail service. “When you take Via Rail, you can enjoy traveling while looking out the window and

This page, top: Indian Pacific train journey across Australia. (Photo © Great Southern Rail) This page, middle: Via Rail Canada, Toronto-Vancouver route. This page, bottom: Via Rail Canada, Montreal-Halifax route. (Photos by Bianca Courtemanche) Opposite page: Royal Caribbean Allure at Port Everglades. (Photo courtesy of Royal Caribbean).

seeing scenic portraits of cities, prairies, and the Rockies, while being comforted by having a quiet time. “It’s spacious. We have invested in making cars accessible, roomy, and user-friendly for people with limited mobility and special conditions. We also cater to glutenfree and other special dietary needs, with advance notice. “Canadian laws and regulations provide ample services for people with limited mobility. It’s part of the fabric of Canada to provide accessibility to its citizens and to travelers. “At various stations we have lifts to allow people with wheelchairs to board the train. We have a dedicated area where the person will anchor his or her wheelchair safely. “We also allow someone, or a service animal, to accompany that person and ride at no additional cost. We ask to receive 24-hour, or ideally, 48-hour advance notice that someone with a specific condition will be boarding the train so the attendants can recognize and attend to their needs.” For those interested in viewing gorgeous vistas while riding the rails, Gagnon says, “There are two long-haul routes — one is The Ocean — a 22-hour journey from Montreal to Halifax. The train travels along shorelines of the Atlantic Ocean and has a panoramic car. “The other one is The Canadian, between Toronto and Vancouver, through the Canadian Rockies and the prairies. It‘s a very scenic three-and-a-half-day journey. The track goes across terrain where there are no highways and roads. It’s very unique — even in the summer time, the Rockies are covered with snow. It’s a very elevated, beautiful terrain, with views of the Pacific Ocean.” For more information on Via Rail, go to https://www.viarail.ca/en/travel-info/ special-needs/accessibility


etting as much information as posG sible and alerting the airline to your needs in advance, as well as allowing time for delays, are critical when traveling by air. Be sure to factor in potential traffic issues, lengthy distances between gates, crowds, long lines and flight delays when connecting. And don’t be hesitant to ask for assistance, such as wheelchairs or electric carts, experienced travelers advise. One f lyer says, “My husband has Huntington’s disease, and for him, we found going on the plane with assistance has given him more time to get to his seat without peo-

ple pushing and being impatient. Also, we request wheelchair assistance at all airports. “If you’ve ever been to Jamaica, Miami, or Atlanta airports, then you know it’s like walking a mile from one point to another. Imagine if you only have half an hour to get from one gate to the other. Always ask for assistance when needed. Most of the people who work at airports are only to happy to help.” Traveler Keti Galanos says, “Panic attacks are commonplace for those of us afflicted. I am at the near norm readings for PAH, yet will take medication for the next year. I request a wheelchair, as I cannot run between gates in the airport, and I always panic and am out of breath.” Traveler Cheryl Kneal recalls, “I traveled to Chicago from Orlando over Christmas. I had my portable oxygen concentrator and had the airline take me to the gate for departure, and then, when we arrived, to where I was picked up, to conserve energy.” Kneal adds that, to deal with stress and panic attacks about running out of oxygen, she meditated frequently during the twohour flight. For those with limited mobility, addressing needs step-by-step ahead of time is key to alleviating stress and making travel as hassle-free as possible. When making your airline reservation, let the agent know if you’ll be traveling with a wheelchair or scooter, if you’ll need one at the airport, and if you’ll need to transfer to one of the airline’s aisle wheelchairs (a narrow wheelchair designed to fit aircraft aisles) to help you board or deplane. Also ask if you can use the aisle wheelchair during the flight to get to the bathroom. Ask to keep your wheelchair until you get to the gate, check it there, and have it returned to you at the gate on arrival. (Depending on the type of wheelchair you have and space available, it will either be stored in the cabin or in the baggage hold during the flight.) Flight attendants can help passengers use the aisle wheelchair to get to the restroom, but not in the restroom, and many onboard restrooms are not wheelchair accessible. Flight attendants are also not required to lift or carry passengers. Some fliers with limited mobility limit fluid intake before and during a flight to prevent the need to use the restroom, however doing so can present the risk of dehydration and other medical problems. Flying can also be unpredictable. Air CONTINUED ON PAGE 24


traffic and weather delays can mean the plane is stuck on the runway before takeoff or circling for an extra hour before landing. If you have limited mobility, it might be advisable to consider flying with someone who can help you in the restroom, or catheterization, rather than limiting fluids.


Harrington advises those who C andy have concerns about navigating airport

security in wheelchairs and with medication and medical devices to check the TSA guidelines beforehand. “Although the TSA is exempt from the ADA and the ACAA, they have developed specific guidelines for dealing with disabled passengers. They list these guidelines on their website, so it’s a good idea to familiarize yourself with them, so you will know what to expect.” Traveler Ruth Cozad says that she was pleasantly surprised with her TSA experience. “We went to Hawaii with both oxy-

gen and CPAP machines and had an amazing trip. Going through security was my big worry, and it went so smoothly.” For more information on TSA guidelines, go to www. tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions or call the TSA Cares hotline at 855-787-2227 with any access-related questions prior to travel.


travelers with chronic condiF ortions,someespecially those traveling with

oxygen, driving can provide the most stressfree journey, and help them slowly ease into travel. Taking short trips from one central location can also help to conserve energy and get the most out of a trip. Cozad suggests, “My advice would be to stay in one location and take day trips, instead of moving each day. We often take driving trips that last several weeks, and those are easy enough, with my husband unloading and reloading oxygen and CPAP equipment, plus our luggage.”

Washington, D.C.

Milli Washock says, “A lot of people are using the Inogen One portable oxygen device, and it’s nice to go on a plane or a ship. I find it great for long-distance auto travel.” A potential problem, though, says Washock, is that the device does not have a HEPA filter. She recalls that once, while she was dining out, “a man was smoking a cigar in the nearby bar, and suddenly I was ‘smoking a cigar’ and could not breathe.” In this case, Washock found that traveling by car had benefits. “Thankfully, I had an oxygen E tank in the car and did not have to permanently abandon my dinner, but it gave me something to think about.” Despite such challenges, Washock says, “It is good to travel if you can. Just because our bodies do not cooperate the way we want does not mean our brains and lives have to shut down. And, she notes, travel, no matter the distance, can be enhanced by state of mind. “Take it slowly, and enjoy the world around you, whether traveling to your porch or across the world. Each day is a new day.”

Above, left: National Mall skyline at dusk. Above, right: D.C. Metro rail system. (Photos by: Destination DC)

Washington, D.C., one of the nation’s most accessible cities, is also one of the most popular for tourism. We’ve highlighted some of D.C.’s top attractions, hotels and restaurants, as well as travel tips, for visitors with special needs, and accessible vacation destinations in neighboring Virginia.


About a sixth of the U.S. population—more than 48 million people—lives within a fivehour drive of Washington, D.C. Its three airports, Reagan National, Dulles and BWI, offer accessible ground transportation, including liftequipped buses, and Reagan National has a wheelchair-accessible walkway to the Metro station. Amtrak serves D.C.’s Union Station, one of the Metro’s hubs.


Metro The D.C. Metro system serves 86 stations in D.C., Virginia and Maryland. The Washington Metro Disability I.D. Card entitles riders to

discount fares on the Metro and to Baltimore on MARC. The card must be purchased three to four weeks in advance and cannot be pur-

chased at kiosks. For more information go to www.wmata.com/accessibility/metrorail.cfm

Parking and Taxis On every D.C. block with government parking meters, there are two dedicated ADA meters, and the National Mall has dedicated

drop-off zones. Consider saving money on

hotel parking or time searching for park-

ing by using Union Station’s public park-

caringvoice.org • Summer 2014 Food and Travel Issue

ing garage, which connects to the station via elevators. It’s open 24/7 and costs $22 for 12 to 24 hours, while hotel parking can easily be twice that. You can take the Metro from Union Station, and if you’re staying on Capitol Hill, a number of hotels, including the Hyatt Regency and Hotel George, are within a few blocks. Two companies offer wheelchair-accessible taxis in D.C. You can call or reserve a taxi online at: Royal Taxi: 202-398-0500; www.dctaxionline.com Yellow Paratransit: 202-544-1212; www.orderyellowcab.com (Select Add Special Options dropdown menu.) You can also install the mobile app, Taxi Magic, at jttp://taximagic.com/en_US


Hyatt Regency Washington

on Capitol Hill 400 New Jersey Avenue, N.W. 202-737-1234 The Hyatt Regency Washington features 23 ADA-compliant rooms, some of which have roll-in showers. Other accessible features include front door alerting devices and the hotel's restaurants, lounge, fitness center and indoor pool. The hotel is three blocks from Union Station, and near many of the Smithsonian museums and the National Mall. For more information go to http://washingtonregency.hyatt.com/en/hotel/our-hotel/ accessibilty.html

Above: Hotel George lobby (Photo by Isaac Maiselman)

Hotel George 15 E Street, N.W. Hotel: 202-347-4200 Reservations: 800-546-7866 www.hotelgeorge.com One block from Union Station, presidentialthemed, pet-friendly Hotel George features accessible guest rooms (some with roll-in showers), gym, meeting space and business center. Just off the lobby, the hotel’s excellent and accessible Bistro Bis serves modern French bistro fare.


 armine’s C 425 7th St., N.W. 202-737-7770 www.carminesnyc.com/locations/washington-dc This spacious, easy-to-navigate Italian restaurant near the National Mall and Newseum serves super-hearty family-style por-

tions designed to serve four to six people. Carmine’s is a good option for those in wheelchairs, with food allergies like gluten intolerance, and groups and families. Equinox 818 Connecticut Avenue, N.W. 202-331-8118 http://equinoxrestaurant.com President Obama and the First Lady have dined at this accessible, contemporary power spot near the White House. The menu focuses on seasonal, locally-sourced ingredients, with gluten-free and vegan options.


 he Smithsonian Institution T Museums and Galleries The Smithsonian Institution’s 17 D.C.area museums and galleries, including the Air and Space Museum, the African Art Museum, the American Indian Museum, and the National Zoo, are free and offer free manual wheelchair loans on a first-come, first-served basis. For more information, go to www.si.edu/Visit/ VisitorsWithDisabilities

Above: Smithsonian’s National Museum of the American Indian. (Photo: © 2004 Judy Davis/Hoachlander Davis Photography for Smithsonian)

D.C. SUMMER TR AVEL TIP If you’re planning on enjoying one of D.C.’s

many outdoor festivals, remember that the city can be very hot in the summer. Make sure to have an umbrella for shade and plenty of water to prevent dehydration. For more information on accessibility in Washington, D.C., go to http://washington. org/DC-information/washington-dc-disability-information

QUICK TRIPS FROM D.C. Williamsburg, Virginia

Williamsburg, Virginia, 150 miles south of

Above: Carmine’s (Photo courtesy of Carmine’s)

D.C., draws visitors with its Revolutionary War-themed tours, activities and architecture, much of which is accessible. (Williamsburg’s Amtrak station has an accessible platform.) Nearby Busch Gardens theme park is accessible, with wheelchair rentals for a fee. For more information, go to www.colonialwilliamsburg.com/plan/accessibility.

Above: Grommet Island (Photo: Virginia Beach CVB)


The Fife and Drum Inn 441 Prince George Street Williamsburg, Virginia 1-888-838-1783 www.fifeanddruminn.com Williamsburg offers dozens of modern, accessible hotels, but if you want to stick with the colonial theme, the Fife and Drum Inn is just two blocks from the Amtrak station in Williamsburg’s historic section. The inn’s Drummers Cottage is wheelchair-accessible and sleeps up to six.

Virginia Beach

Boasting the world’s longest pleasure beach,

Virginia Beach is a popular family destination 208 miles south of D.C. and 62 miles south of Williamsburg. Although peak seasons can be extremely crowded, a three-mile-long concrete boardwalk, flat, wide sidewalks and spacious curb cuts make Virginia Beach easy to navigate by wheelchair or scooter.  At the Virginia Beach boardwalk and 2nd Street, Grommet Island is the country's first beach playground designed for children and adults of all physical capabilities, and is completely accessible. The playground has drawn visitors from all over the country, with 15,000 square feet of ramps and decking, soft play areas and sculptures, accessible play equipment, a shaded play area, picnic areas, and beach wheelchairs. For more information go to www.grommetisland.org.  Catering to children and adults with special needs, 70-acre Camp Grom is scheduled to open in Virginia Beach in spring 2016 as an accessible state-of-the-art beach-style adventure camp emphasizing rehabilitation through recreation.  Camp Grom activities will accommodate a range of abilities and will include wheelchairaccessible adventure trails, cable wakeboarding on a man-made lake, indoor boogie boarding, and ziplining. It will also feature a rehab pool and a wave simulator. For more information go to www.jtwalk.org/gromcamp.asp


 r F n e t G lu World Tour

Chef Tori Kramer

Let these delicious internationally-inspired gluten-free recipes from top chefs around the world whet your appetite for new dishes and destinations. Eva Leonard gets the details on restaurants serving up gluten-free goodness.

Photo courtesy of Park Hyatt Washington

TORI KRAMER, PASTRY CHEF FOR THE PARK HYATT WASHINGTON, D.C.’s AWARD-WINNING Blue Duck Tavern, describes the evolution of her gluten-free awakening. “I worked in a pie shop, and I was around a lot of flour. When I was in the shop, I got sick, and had to wear a mask. A friend suggested I give up gluten, but there was no way I was going to leave the kitchen—baking is my passion. Now, I’m in a larger kitchen, where the ventilation is great, and we make gluten-free and vegan items.” Among those delectables: a carrot apple muffin topped with pecan streusel that has no refined sugar, but derives its natural sweetness from apples, carrots and applesauce, a multi-textured, chewy cherry-chocolate-almond granola bar, and a rich, moist orangeglazed orange scone. Kramer’s gluten-free creations make the palate feel treated, rather than deprived. “Once I found out I had celiac disease, I went to the store, and I was completely distraught. That’s when I made it my mission to create delicious, gluten-free food,” says Kramer. “The first gluten-free thing I made was cookies, and that was really exciting. I made my grandmother’s bread recipe and had to play around with it. I spent an entire weekend baking nothing but bread.” Kramer's recipes have been designed with maximizing spurts of energy in mind: “You can make it in big batches and keep it in the freezer. It’s simple and still delicious. When I did make food for myself, I had so little energy. “For me, the most important thing has been to remove the stigma of gluten-free food. I want to be able to make one meal that everybody can enjoy. We’re making huge progress in the world of gluten-free. We’re not such a tiny minority anymore.” An enthusiastic response to Blue Duck Tavern’s gluten-free options, Kramer notes, has prompted the restaurant to expand its menu to include items like gluten-free waffles and pancakes and fueled her desire to cater to other dietary needs. “Now that we’ve been receiving great feedback from the gluten-free menu items, it’s so important to open this up for those with other dietary restrictions.“ The biggest challenge Kramer says she has found is in trying different ingredients. “I’m still learning every single day. You have to take into account texture, feel, and taste. You have to keep trying and learn to make things in big batches when you find the time and energy. “The most exciting thing for me is when I create a gluten-free menu—to be able to bring my knowledge here and share that with everyone else.“


caringvoice.org • Summer 2014 Travel Food and Issue Travel Issue

Photo courtesy of Blue Duck Tavern

Mix all together until crumbly.

Gluten-Free Orange Scones with Orange Glaze Tori Kramer, Pastry Chef, Blue Duck Tavern, Park Hyatt, Washington, D.C.

Gluten-Free Carrot Apple Muffins Topped with Pecan Streusel Tori Kramer, Pastry Chef, Blue Duck Tavern, Park Hyatt, Washington, D.C. YIELD: 15 muffins Ingredients

2 cups gluten-free flour (see ingredients for gluten-free flour below) 1 tablespoon baking powder ½ teaspoon baking soda 1 teaspoon salt ½ teaspoon ground ginger ½ teaspoon ground cinnamon ¼ teaspoon ground cloves 1 cup unsweetened applesauce ½ cup granulated sugar ½ cup light brown sugar 1 teaspoon vanilla extract 2 large eggs 1 cup finely shredded carrots Ingredients for gluten-free flour

4 4 4 2 2 2½

cups white rice flour cups brown rice flour cups corn starch cups tapioca flour cups potato starch tablespoon Xanthan gum

YIELD: 20 large scones (4 to 5 inches wide each) or cut ingredient amounts in half for 10 scones (2 to 2.5 inches wide each)

6 1 3 1 2 1½ 10 -

pounds gluten-free flour pound sugar ounces baking powder ounce salt pounds butter quarts cream eggs zest of three oranges

Method for the scones

Use the cutting in method to obtain peasized pebbles of butter, add all liquid ingredients and mix just until combined. Do not over mix. Chill in a 1 ½–2 inch thick packet. Cut out triangles and egg wash with egg or cream and bake at 325°F until just baked in the center, about 15 minutes. Ingredients for the orange glaze

1 1 1

cup confectioners’ sugar teaspoon vanilla extract tablespoon baking powder

Method for the orange glaze

Whisk all together until smooth and drizzle over scones.

Chef David Guas

Method for gluten-free flour

Mix all together well

2 ¼ ¼ ½ 1

tablespoons gluten-free flour cup light brown sugar cup chopped pecans teaspoon cinnamon tablespoon cold butter (cut into small cubes)

Photo by Jonathan Times

Ingredients for pecan streusel

Gluten-Free Chewy Honey Almond Bars David Guas, Chef/Owner, Bayou Bakery, Coffee Bar & Eatery, Arlington, Virginia YIELD: 12 bars Ingredients

3 5 4 2 1 2¼ 1½ 1 1 1

ounces unsalted butter ounces light brown sugar ounces honey ounces peanut butter, smooth tablespoon vanilla extract cups oats, old-fashioned cups Rice Krispies cereal cup unsalted almonds cup raisins teaspoon salt, kosher


Add the first five ingredients to a small twoquart stockpot. Place the remaining dry ingredients in a stainless steel mixing bowl and reserve. In the stockpot with a candy thermometer, stir all ingredients together with a rubber spatula on medium-high heat. Simmer and cook until the mixture reaches 220°F. Pour mixture slowly over the top of reserved dry mix and stir with rubber spatula until all dry ingredients are coated.

Method for scones

Combine first 7 ingredients and mix well. Cream applesauce and sugars together in mixing bowl with paddle. Add vanilla and eggs one at a time until blended. Add dry ingredients on low just until blended. Fold in carrots. Let sit for 40 minutes—overnight (in fridge). Scoop into greased/lined muffin tins, sprinkle top with streusel and bake at 350°F for about 15-20 minutes until toothpick inserted in center comes out clean.

competitive outdoor cooking challenge show, American Grilled, debuting this summer on the Travel Channel. Oprah Winfrey’s O Magazine named Guas one of the “Ten Best Pastry Chefs in the Country,” and his cookbook, DamGoodSweet—Desserts to Satisfy Your Sweet Tooth New Orleans Style was one of Food & Wine magazine's “Best New Dessert Cookbooks” in 2009. Bayou Bakery, Coffee Bar & Eatery began offering gluten-free items, including the chewy honey almond bars below, two years ago.

NEW ORLEANS NATIVE AND AWARDwinning chef and owner of Arlington, Virginia’s Bayou Bakery, Coffee Bar & Eatery, David Guas was recently tapped to host the new

In a 13x9-inch baking pan, place parchment paper down and spray lightly with Pam before pressing the bar mixture down into the pan by hand. Then place the filled pan in the refrigerator for about an hour. Assembly

Remove after refrigerating and cut the bars length-wise in half. Then cut bars just over 2 inches wide for a total of 12 bars. Continued on page 28


Photo courtesy of Bayou Bakery, Coffee Bar & Eatery

Method for pecan streusel

WHEN CHEF CHRIS CLIME’S WIFE WAS DIAGNOSED WITH THE AUTOIMMUNE DISEASE lupus, she embarked on a strict gluten-free diet on the advice of her doctors. It was then that Clime began to notice a growing demand for gluten-free dishes at PassionFish, the Reston, Virginia, restaurant where he is executive chef. “Maybe it was a coincidence, but more likely, my awareness was heightened by our personal situation,” says Clime. “The good news is that my wife’s condition is not life-threatening, and going gluten-free has been really good for her, as well as the rest of the family.” Many dishes on PassionFish’s regular menu already meet gluten-free criteria, and Clime is happy to accommodate special requests. “It’s always been fun for me to create with new or different ingredients, so this trend is a challenge I don’t mind at all. “Some of our most popular dishes are Asian-inspired, and since Asian cuisine is rice-based, wheat flour isn’t much of an issue. The red Thai curry lobster clay pot and the crispy Vietnamese crab and shrimp spring rolls are naturally gluten-free. So is the whole crispy flounder, which is prepared with cornstarch, rather than flour.” Clime—a big fan of Latin flavors—notes that Latin cuisine is not very wheat flour-heavy, often using corn or cassava flour instead. He coats PassionFish’s New Orleans fried oysters and shrimp in corn flour and has adapted other menu items to eliminate gluten, including jumbo lump crab cakes, and blue crab and corn chowder, which he now makes with rice flour. At home, Clime experiments with a range of flour alternatives—the Climes now eat pasta made with corn flour. Clime’s wife’s heritage is Indian, and the family also enjoys various Indian dishes with roti, a flatbread made with lentil flour. Clime’s favorite flour alternative for coating chicken and veal for scaloppini is a chickpea/almond/amaranth flour combo available at Trader Joe’s. “The crust gets crispy like it’s been deep-fried, although it’s just sautéed. That’s a pretty cool discovery that I never would have made if I hadn’t been forced to expand my flour horizons.”

Gluten-Free Jumbo Lump Crab Cakes and Sweet Corn Chow-Chow Chris Clime, Executive Chef, PassionFish, Reston, Virginia YIELD: Four crab cakes Ingredients

1 3 1 1 1 2 ½ 1 1 1 -

Photo courtesy of PassionFish

Photo by Scott Suchman

Chef Chris Clime

pound Maryland jumbo lump crabmeat dashes Tabasco sauce each lemon, juiced tablespoon Old Bay seasoning tablespoon chives, chopped teaspoons kosher salt cup mayonnaise each egg [large] tablespoon rice flour tablespoon grape seed oil To taste, drawn butter To garnish, chives, chopped


Carefully pick the crabmeat [see suggested procedure below] and refrigerate until needed. Next, in a mixing bowl, combine Tabasco, lemon juice, Old Bay, chives, salt, mayonnaise, and egg. Mix until all ingredients are well combined. Gently add about two-thirds of this mixture to the chilled crabmeat, carefully folding it in so you don’t break up the lumps. Check the seasoning; you want to add just enough wet mixture to the crab to season it well, without adding so much that you have to add extra rice flour. Add just a bit more of the wet mixture if needed, and then gently add in the rice flour to bind the mixture together. Cover the bowl with plastic wrap and refrigerate for 30 minutes. Preheat the oven to 350°F. Divide the mixture into four portions and form crab cakes. [Note: You can make mini crab cakes if preferred.]


caringvoice.org • Summer 2014 Food and Travel Issue

Add about one tablespoon of grape seed oil to a non-stick pan and sauté the cakes until golden brown on one side. Flip the cakes and sauté on the other side until golden brown. Transfer the cakes to a baking sheet. Top each with a little drawn butter and finish in the preheated oven for 5-7 minutes. Do not overcook; finishing them in the oven is just to help the cakes bind together and plump the meat. Assembly

Serve atop sweet corn chow-chow [see recipe below] and finish with tartar sauce [if desired] and freshly chopped chives. Ingredients for the sweet corn chow-chow


each yellow or white corn ears, whole

3 ¼ ¼ ¼ 1 -

tablespoons extra virgin olive oil cup apple cider vinegar cup red bell pepper, diced cup red onion, diced teaspoon cilantro, chiffonade To taste kosher salt To taste cracked black pepper

Roast the corn in the husks at 450°F for 20 minutes. Then shuck and slice off the ear. Combine all ingredients in a bowl, and season to taste. Method to pick crabmeat

Fill two bowls with ice and place a smaller bowl on top of each ice bath. Place the crabmeat into one of these smaller bowls to keep it chilled while you clean it. Fill this bowl with cold water. Grab small lumps of crabmeat and gently pick through the tops to remove any cartilage, being careful not to mash the meat or break up the lumps. To pick the shell out, dip your fingers in the water so the shell will stick to your fingers as you clean the meat. To remove the shell, dip your fingers into the water so it will go into the bowl. Place the cleaned meat into the other bowl.

Fairmont Hotels & Resorts

FAIRMONT HOTELS & RESORTS’ MORE THAN 60 PROPERTIES around the globe include the Fairmont, Raffles, and Swissôtel brands. The hotel group’s Lifestyle Cuisine Plus menu caters to guests with specific diet-dependent conditions such as diabetes, heart disease and gluten-free, as well as dietary preferences including, macrobiotic, raw and vegan. Fairmont chefs have been trained to prepare a wide range of special dietary and allergy-specific meals and use recipe analysis software to help customize entrees and menus to meet guests’ caloric and nutritional requirements. Using nutrient-rich ingredients, clean cooking methods and local food products, chefs create dishes that are wholesome, balanced and full of taste. Guests with food allergies and sensitivities are invited to speak with the chef to plan their food options during their stay.

Gluten-Free Golden Apple Salad Raffles Praslin, Praslin Island, Seychelles YIELD: One serving Ingredients

120 10 2 1 1 1 2 20

grams golden apple grams sugar small chilli shots tablespoon olive oil tablespoon white wine vinegar tablespoon spring onion leaves of mint grams red onion


Wash, peel with peeler and grate the golden apples with grater. Squeeze them in the strainer until dry and remove the juice. Preheat sauté pan on the stove, add olive oil and let the pan warm. Add chopped onions and sauté until they get the aroma for 1 minute and add the golden apples. Sauté for 3 minutes, remove from fire and transfer to a bowl. Add brunoise chilli, squeeze lemon juice and white vinegar. Mix all ingredients and seasoning with salt and pepper. Ready to serve.

Photo courtesy of Fairmont Hotels & Resorts


Gluten-Free Sirloin Steak with Mango Salsa Restaurant, The Fairmont Kea Lani, Maui YIELD: One serving Ingredients

½ ½ 1½ 5 1 1 1

small mango organic lime spring onions mint leaves salt sirloin steak (about 180 grams) tablespoon mixed pepper tablespoon olive oil


Season sirloin with salt and crushed pepper and keep for 5 minutes. Light the grill or preheat a grill pan. Grill sirloin steak over moderate heat, turning and making mark on top of the beef until it is cooked as per taste. Wash, peel with peeler and boil the potatoes until tender. Throw the water and transfer the potatoes into a potato masher. Reheat the pan and add cooking cream; bring to boil and add the potatoes. Stir with balloon whisk until smooth and creamy. Season with salt and pepper and transfer to piping bag. Keep for 3 minutes and present as a line on the plate. Prepare boiling water in the pot on the stove. Wash and peel all vegetable ingredients and cut into jardiniere. Put all the vegetables for blanch for 3 minutes, strain and put into a bowl with ice water. Preheat sauté pan, add olive oil and sauté vegetables until they get aroma, add seasoning: salt and pepper. Method for mango salsa

Wash and peel the mangos with a vegetable knife. Peel the onions and wash properly. Prepare the cutting board and cut mangos and onions into brunoise. Thinly slice the coriander. Put the onions and mango into a bowl and add the sweet chili and coriander. Ready to serve and garnish with cherry tomato. Continued on page 30


Photo courtesy of Fairmont Hotels & Resorts

2 1 1 ¾ ¾ ¼ ¾

teaspoons finely-chopped peeled fresh ginger tablespoon vegetable oil teaspoon mustard seeds cup dried apricots (6 ounces), finely chopped cup dried currants (1 ½ ounces) cup water cup red-wine vinegar cup sugar teaspoon salt


Fairmont Banff Springs Hotel, Alberta, Canada YIELD: 10 servings Ingredients

10 (6-inch) buffalo short ribs (about 9 pounds total) 8 cups red wine 1 bunch fresh thyme 1 bunch fresh flat-leaf parsley 2 fresh bay leaves or 1 dried 1 tablespoon plus 2 teaspoons freshly ground black pepper 1 head garlic, peeled and coarsely chopped 2 tablespoons kosher salt 3 cups onions, peeled and cut into ½-inch pieces 2 ½ cups carrots, peeled and cut into ½-inch pieces 2 ½ cups celery, leaves removed and cut into ½-inch pieces 6 cups beef jus 2 cups peeled pearl onions 2 cups sherry vinegar ½ cup raw cane sugar 3 cinnamon sticks - juice and zest from one orange Method for short ribs

 dd wine, thyme, parsley, bay leaves, 1 tablespoon pepper, and A garlic. Place in large bowl and marinate in refrigerate for 24 hours. Remove ribs from marinade and drain, reserving liquid. Pat ribs dry and sprinkle with kosher salt and remaining 2 teaspoons pepper.  re-heat oven to 300°F. Heat a large cast iron skillet, over modP erately high heat, heat ¼ cup oil just until smoking. Transfer ribs, bone side up in a roasting pan and set aside. Add onions, carrots, celery to skillet, sauté until lightly caramelized. Add over ribs, pour stock and cover with foil, braise in oven for 3-4 hours or until meat pulls away from bone.  emove from oven and allow to cool. Drain off liquid into a heavyR bottom sauce pot and skim fat. Reduce to coat back with spoon. Method for pearl onions

I n a heavy bottom saucepot add vinegar, sugar, cinnamon stick and fresh thyme. Bring to a boil. Add orange juice and zest, add onions and simmer for 8 minutes, take off stove and allow to cool. Place in a bowl. Ingredients for tomato and apricot chutney

2 2


cups diced tomato garlic cloves, finely chopped caringvoice.org • Summer 2014 Food and Travel Issue

Gluten-Free Chocolate Flan with Berries Fairmont The Queen Elizabeth, Montréal, Québec, Canada YIELD: 10 servings Ingredients for the chocolate ganache

400 grams non-dairy dark chocolate 3.7 ounces maple syrup 350 grams silken soft tofu 1 tablespoon vanilla extract 1 pinch salt Ingredients for the unbaked crust

650 grams pecans (chopped and roasted) 350 grams dried apricots and figs 20 grams sugar 5 centiliters chocolate sauce 20 blueberries 30 raspberries 10 mint leaves Method for the chocolate ganache

Pour the ingredients in blender and stir in the melted chocolate. Method for the unbaked crust

 oast and chop the pecans. Cook and purée the dried fruits. Mix R together and press into the bottom of cake ring. Pour ganache over it and let it cool down. Serve with a little bit of chocolate sauce and berries. Decorate with mint leaves.

Photo courtesy of Fairmont Hotels & Resorts

Gluten-Free Braised Buffalo Short Ribs With Heirloom Tomato & Apricot Chutney

 ook garlic and ginger in oil in a 1 to 1 ½-quart heavy saucepan C over moderate heat, stirring, until golden, 1 to 2 minutes. Add mustard seeds and cook, stirring, until fragrant, about 1 minute. Add remaining ingredients and simmer, partially covered, stirring occasionally, until almost all liquid is absorbed, about 20 minutes (chutney should be moist). Cool to room temperature.

Legal Corner

Photo by Bianca Courtemanche


Roads Manor sleeping car, Toronto -Vancouver Route. Via Rail, Canada.


ESEARCH SUGGESTS THAT THE ACT OF planning and anticipating a vacation boosts happiness, and that a very relaxed vacation boosts mood upon return. If you’re planning a vacation, this article will help you prepare for your journey and understand the laws that protect you and help make travel barrier-free.

Domestic Travel Airlines The Air Carrier Access Act (ACAA) prohibits air carriers flying to and from the U.S., its territories, possessions, and commonwealths from discriminating against passengers on the basis of physical or mental disability. The Department of Transportation (DOT) has issued a rule providing standards of service which air carriers are expected to provide disabled individuals. The DOT also provides a toll-free hotline to provide consumers with general information about the rights of air travelers with disabilities, respond to requests for printed consumer information, and help air travelers with time-sensitive disability-related issues. The hotline’s hours are 9 a.m. to 5 p.m. EST, Monday through Friday, except federal holidays. Call 1-800-778-4838 (voice) or 1-800-455-9880 (TTY) for assistance. Requesting information from your airline prior to fl ight is also a great idea; for example, how will passengers embark, what storage facilities will be available, and what type of lavatory will be on the plane? The Americans with Disabilities Act (ADA) requires that carriers provide this information. Generally, you’re not required to give advance notice to the air carrier that you have a disability; however, it may be a good idea to do this so the attendants will be ready to assist. There are some situations in which you must give advance notice to the air carrier. For example, when using your FAA-approved oxygen concentrator in-fl ight, you may need to present a statement from your physician confi rming that you can safely undertake the fl ight. If you elect to have an attendant on board, remember that the attendant is there for emergency evacuations and is not there for personal services like assisting with eating or accessing the

CVC Health Care Attorney Stephanie Posuniak explains the rights of travelers with special needs, both in the U.S. and abroad. lavatory. The carrier cannot impose a charge for the transportation of a requisite safety assistant. Cruise Lines and Railways Domestic cruise lines must also comply with the ADA by taking steps to accommodate passengers with disabilities. Under the ADA, a cruise line must not:

■ refuse to provide transportation to you because you have asserted your ADA rights;

■ require advance notice of your disability if you are not seeking additional assistance; or

■ charge higher fees than other passengers. The ADA also applies to domestic passenger railways. Under the ADA, railcars must contain:

■ 32-inch-width doorways; ■ signs indicating priority seats for persons with disabilities; and

■ handrails and stanchions for boarding. Sleeping compartments on railways must allow a person using a wheelchair or mobility aid to enter and maneuver within the compartment. Service Animals You don’t need to provide certification for your service animal in the airport as long as you provide “credible verbal assurances” that the animal is a service animal. With that in mind, bring documentation just in case. The ADA defines “service animals” as those that work or complete a task “directly related to the person’s disability.” Thus, if the animal is solely for comfort or emotional support unrelated to a disability, the animal does not qualify as a “service animal” under the ADA. When going through airport security, let the security officer know that the animal is a service animal, which means the officer cannot separate you two. While going through the metal detector, you may choose to have your CONTINUED ON PAGE 32 31

animal go before or alongside you, whichever is better. The officer is trained in how to conduct searches of individuals with service animals and is subject to specific rules. The rules state that the officer cannot intentionally touch your animal without your permission. But you have a duty to assist with the inspection by controlling the animal. You may keep your service animal with you in-flight. Lodging If traveling within the United States, the ADA applies to hotels, motels, inns, and other places of lodging built later than January 26, 1993. The ADA requires these structures accommodate individuals with disabilities and includes detailed design requirements. Dwellings subject to the ADA must also provide van-accessible parking spaces depending on the total number of rooms. There must also be at least one accessible route for those using a wheelchair or other assistive devices to approach and enter the building. Depending on the number of rooms, the hotel must also provide roll-in showers. Health Insurance Will your health insurance cover you while traveling? If traveling within the United States, regular Medicare rules apply for Part A and B coverage (“original Medicare”). If you have a different type of health insurance than Medicare, check your policy for what’s covered. If you have an Advantage Plan, the rules differ depending on how long you travel outside the plan’s service area. If you travel outside the plan’s service area continuously for more than six months, most plans will automatically dis-enroll you and enroll you in Original Medicare if, in the meantime, you do not choose another Advantage Plan. If outside the service area for less than six months, whether the plan will cover you depends on the type of plan you have (PPO vs HMO). Generally, HMOs do not cover services from providers outside the plan’s network. For Part D, check with your plan, the pharmacy, or call 1-800-MEDICARE for information on whether your preferred pharmacy is on your Part D Plan’s preferred list. The same applies for Medigap policies: see your Medigap policy for more information.

International Travel Airlines Under the ACAA, both domestic and foreign carriers flying to or from the U.S. must:

■ permit a passenger to use her FAA-approved portable oxygen concentrator during flight;

■ provide assistance with boarding, disembarking, and reaching connections; and

■ accept battery-powered wheelchairs, including the batteries. Cruise Lines and Railways Cruise ships that dock at U.S. ports must comply with the ADA, and the U.S. ports must also be ADA-compliant. For new port facilities, the operator must ensure that individuals with disabilities, including those using a wheelchair, can use the facilities. Existing ports may have to remove architectural barriers, if possible, and if not, provide reasonable alternative accommodations. 32

caringvoice.org • Summer 2014 Food and Travel Issue

European railways may not be wheelchair-accessible and are not subject to the same United States standards. Contact the local embassy to determine what services and accommodations they may extend. Service Animals Foreign carriers are not subject to the ADA and may only accept service dogs. Check with your destination’s embassy. You will also want to carry documentation showing that your animal is a service animal and not a pet. It’s also a good idea to learn the forum country’s laws and regulations pertaining to leashing or muzzling and your liability if your service animal were to bite. Traveling with a service animal also requires consideration of cultural and environmental issues. What are the forum country’s cultural customs regarding your animal? How will the public behave toward your animal? Prepare your service animal by exposing him to the climate, crowds or environment he will experience. Also be mindful of your animal’s health. What changes in diet, grooming, and personal care will the animal experience? Determine whether the drinking water will be safe and to what parasites or viruses he may be exposed. You’ll also want to get his vaccinations up-to-date and carry a record of that. Lodging Depending on your destination, you may need to make arrangements with the target hotel to assure accessibility. Health Insurance The Medicare rules become more complex in the international arena. “Outside the United States” means anywhere other than the 50 states, District of Columbia, Puerto Rico, US Virgin Islands, Guam, American Samoa, and the Northern Mariana Islands. Generally, Part A (which predominantly covers in-patient care and home health services) does not cover you while overseas, except in limited situations. For example, if you experience a medical emergency and the foreign hospital is closer than the nearest U.S. hospital, Part A may cover you. Part B (which covers services such as out-patient doctor visits) does not extend overseas unless in specific situations. For example, Part B may cover medically-necessary services on board a ship within the territorial waters adjoining the land areas of the United States if the ship is six hours or less in distance away from a U.S. port. If you have a Part D Plan, remember that drugs are not covered if bought outside the United States. If you have a Medicare Advantage or Medigap Plan, check with your plan to see whether you are covered abroad. If you find that you are uninsured or underinsured overseas, you can buy a supplemental health insurance policy specifically for traveling. Prescription Medications When bringing medications into a different country, be familiar with the forum’s laws on what drugs are legal and what documentation is required. If unsure, contact the embassy. I hope you notice the mood-boosting effects when planning your next vacation! If you start to feel overwhelmed, remember, as the Chinese philosopher Lao-tzu said, “A journey of a thousand miles begins from beneath your feet.”

In Your Words Debora Camp was adopted and didn’t grow up knowing that Huntington’s disease was part of her genetic heritage. Her husband, Stephen Camp, describes how he and Debora deal with the illness that took them by surprise.



church, so our memories of each other go back to childhood. We attended different high schools, but later attended the same college. I suppose we were opposites in many ways, Deb, the extrovert, and me, the shy one. We married in 1973 and have three children and five grandchildren. Deb’s Huntington’s disease came as a complete surprise to us, since Deb was adopted. The diagnosis came in 2009 when her family doctor was concerned about odd movements Deb showed during a medical appointment. In retrospect, we can recognize other earlier symptoms, but that symptom is what resulted in a referral to a neurologist. Deb and I have always found moments to laugh at our predicaments, and as strange as it may seem, we even found moments to laugh when we got the shocking news of her diagnosis. Deb’s adoptive mom had Parkinson’s, and while we waited for the neurologist’s diagnosis, she wondered whether that might be her fate as well. When she got the Huntington’s diagnosis, she came home and said to me, “The good news is I don’t have Parkinson’s or Alzheimer’s. The bad news is, I have both.” Deb is a very independent and determined per-

son. She insists that she will live as fully as possible for as long as she lives, and humor will always be part of living. Our advice to anyone newly diagnosed would be to act as proactively as possible. A recent incident was shocking, but was the impetus to prepare for and prevent future similar incidents. Deb was traveling with our daughter and three grandchildren recently when they stopped for a bathroom break at a donut shop. Deb accompanied the children to the restroom, while our daughter saw to other tasks. Suddenly, three police cars pulled into the parking lot and blocked the exit. A policeman approached Deb. She was distributing juice boxes to the children as they fastened themselves into their backseat restraints. He began to question her and ordered her to get out of the car. He then pulled her hands behind her back, presumably to handcuff her. My daughter ran around the car yelling, “She has Huntington’s.” The policeman stopped and apologized and asked if he could be helpful. Apparently, someone in the donut shop had thought Deb was drunk and called the police. Deb explained to the grandchildren through her tears that the police thought she was sick. She went home CONTINUED ON PAGE 34


and ordered a medical bracelet that indicates she has Huntington’s and she wears that whenever Deb is a very she leaves the house. We’ve also independent discussed Deb’s Huntington’s with our local police department. and determined HDSA has a very helpful caregiver guide designed for police person. She departments that can be found at insists that she the HDSA website. (See sidebar.) Deb and I both spent much will live as fully of our careers as mental health as possible for as counselors on college campuses. One might think that helps us long as she lives, deal more effectively with difficult circumstances in our lives. and humor will Well, Huntington’s has its surprises, and any day can bring a always be part new challenge. of living. Deb didn’t grow up knowing that Huntington’s was a part of her genetic heritage. She never saw an older relative and her family cope with it as a fact of life. Every difficulty is new to us. We are now strategizing to make sure Deb has regular checkins from friends or potential caregivers, since I am often away from home. Deb and I are both concerned about the potential for a fall, and we’re evaluating our home for ways to reduce the risk. We are working with Deb’s doctor to be sure she is getting the right medication to help manage her mood, sleep, and energy. Deb strives to be as active as possible. She has always loved children, the outdoors, animals, and singing. She is active in Animatera, a southwestern New Hampshire women’s singing group.

We live in a rural setting and have always been hobby farmers. The usual routines of a hobby farm are now much more difficult, but we manage with the help of neighbors. Deb is retired, but I continue to work in higher education. I am a dean in Student Affairs at a community college. I love my work, but can never stop worrying about Deb and even our children and grandchildren who are at risk. Spouses of persons with Huntington’s need to care for themselves too. Not long ago, I was diagnosed with Parsonage-Turner syndrome, an autoimmune disorder that is quite rare. In my case, it resulted in paralysis of my diaphragm. Since I’m healthy otherwise, I was able to adjust easily by using the other torso muscles involved in breathing. I’m convinced, however, that my illness is partly a stress response to Deb’s illness. I’ve determined that loving Deb also requires that I care for myself and seek help when I need it. Huntington’s disease is a challenge that researchers are taking on, and Deb expects to enter some medical trials this summer. My friends and brothers and sisters have been very supportive. These days, I am encouraging all of them to learn more about Huntington’s disease and to help in any way they can to work toward a cure.

Huntington’s Disease Information for Caregivers and Law Enforcement The HDSA Caregiver Guide, providing suggestions and advice for potential law enforcement and other emergency services personnel encounters, can be found at www.hdsa.org/images/content/1/9/19562/HDSA%20LET%20Caregivers%20Guide.pdf

Call HDSA at 800-345-HDSA for more information.

Previous page: Deb and Stephen Camp, Buca di Beppo restaurant, Pineville, North Carolina. Th is page: Deb Camp at the Lazy 5 Ranch, Mooresville, North Carolina.


caringvoice.org • Summer 2014 Food and Travel Issue

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Caring Voice Coalition 8249 Meadowbridge Rd Mechanicsville, VA 23116

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.

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COMMUNITY Magazine, Summer 2014 - The Food and Travel Issue  

Caring Voice Coalition's Summer 2014 issue of Community Magazine. Focused on gluten free eating, and traveling with disabilities.

COMMUNITY Magazine, Summer 2014 - The Food and Travel Issue  

Caring Voice Coalition's Summer 2014 issue of Community Magazine. Focused on gluten free eating, and traveling with disabilities.