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Gluten-Free World Tour Part I

Posted on by Charlie

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.

Chef Tori Kramer

Chef Tori Kramer. 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 orange-glazed 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.“

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

Ingredients Yield: 15 muffins

  • 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 cups white rice flour
  • 4 cups brown rice flour
  • 4 cups corn starch
  • 2 cups tapioca flour
  • 2 cups potato starch
  • 2 ½ tablespoon Xanthan gum

Method for gluten-free flour

  • Mix all together well

Method for muffins

  • 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.

Ingredients for pecan streusel

  • 2 tablespoons gluten-free flour
  • ¼ cup light brown sugar
  • ¼ cup chopped pecans
  • ½ teaspoon cinnamon
  • 1 tablespoon cold butter (cut into small cubes)
  • Method for pecan streusel
  • Mix all together until crumbly.

Gluten-free muffin and scone

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

Ingredients 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 pounds gluten-free flour
  • 1 pound sugar
  • 3 ounces baking powder
  • 1 ounce salt
  • 2 pounds butter
  • 1 ½ quarts cream
  • 10 eggs
  • - zest of three oranges

Method for the scones

  • Use the cutting in method to obtain pea-sized 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 cup confectioners’ sugar
  • 1 teaspoon vanilla extract
  • 1 tablespoon baking powder

Method for the orange glaze

  • Whisk all together until smooth and drizzle over scones.

 

Chef David Guas

Chef David Guas. Photo by Jonathan Times.

New Orleans native and award-winning chef and owner of Arlington, Virginia’s Bayou Bakery, Coffee Bar & Eatery, David Guas was recently tapped to host the new 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.

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

Gluten-free Chewy Honey Almond Bars

Gluten-free Chewy Honey Almond Bars. Photo courtesy of Bayou Bakery, Coffee Bar & Eatery.

Ingredients Yield: 12 bars

  • 3 ounces unsalted butter
  • 5 ounces light brown sugar
  • 4 ounces honey
  • 2 ounces peanut butter, smooth
  • 1 tablespoon vanilla extract
  • 2 ¼ cups oats, old-fashioned
  • 1 ½ cups Rice Krispies cereal
  • 1 cup unsalted almonds
  • 1 cup raisins
  • 1 teaspoon salt, kosher

Method

  • Add the first five ingredients to a small two-quart 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.
  • In a 13×9-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.

 

Stay tuned for Part 2 of our Gluten-Free World Tour, highlighting more gluten-free recipes from top chefs!

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Posted on by Charlie

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Accessible Travel: Washington, D.C.

Posted on by Charlie

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.

National Mall skyline at dusk.

National Mall skyline at dusk. Photo by Destination DC.

GETTING THERE AND AROUND
About a sixth of the U.S. population—more than 48 million people—lives within a five-hour drive of Washington, D.C. Its three airports, Reagan National, Dulles and BWI, offer accessible ground transportation, including lift-equipped 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.

D.C. Metro rail system

D.C. Metro rail system. Photo by Destination DC.

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 purchased 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 parking by using Union Station’s public parking 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 http://taximagic.com/en_US

Hotels
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

Hotel George
15 E Street, N.W.
Hotel: 202-347-4200
Reservations: 800-546-7866
www.hotelgeorge.com
One block from Union Station, presidential-themed, 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.

Hotel George lobby

Hotel George lobby. Photo by Isaac Maiselman.

Restaurants
Carmine’s
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 portions 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.

Carmine's

Carmine’s. Photo courtesy of Carmine’s.

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.

Smithsonian's National Museum of the American Indian

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

Attractions
The Smithsonian Institution
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

D.C. SUMMER TRAVEL 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 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.

Hotel
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.

Grommet Island

Grommet Island. Photo by Virginia Beach CVB.

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 wheelchair-accessible 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/grom-camp.asp

—Eva Leonard

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CVC Earns 4-Star Rating from Charity Navigator

Posted on by CVCinfo

Caring Voice Coalition is proud to announce that we have earned a 4-star charity rating, the highest possible, from Charity Navigator, the nation’s largest charity evaluator.

Charity Navigator works to help charitable givers make intelligent giving decisions by providing information on more than five thousand charities nationwide and by evaluating their financial health. It calculates each charity’s score based upon several broad criteria, including how much is spent per dollar raised, what percentage of funds goes to programs vs. administrative and fund-raising expenses, and the organization’s long-term financial health. It then assigns a rating from one to four, with four being the best rating.

To view CVC’s Charity Navigator rating page, go to http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=13506#.U7Qk4Y1dX1g

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Accessible Travel: Travel Therapy

Posted on by Charlie

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.

Canoe Coming into shore, Waikiki, Oahu, Hawaii.
Canoe coming into shore, Waikiki, Oahu, Hawaii. Photo by Hawaii Tourism Authority (HTA)/Tor Johnson

“Part 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. 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 barrier-free 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.

BEFORE YOU GO
Before you start planning your trip, check 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 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.

Scandic Hotels height-adjustable bed.
Scandic Hotels height-adjustable bed.

HOTELS, RESORTS, AND THEME PARKS
Travel writer Candy Harrington has been covering accessible travel for the 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 ‘ADA-compliant’ room.

“If you need a roll-in shower, specify that, because all accessible rooms do not have roll-in 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.

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 wide-open door-less gateway entrance.

Magnus Berglund: Accessibility Director, Scandic Hotels
Magnus Berglund: Accessibility Director, Scandic Hotels. Photo by Karl Gabor for Scandic Hotels.

Stockholm-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 hearing-impaired, 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

 

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 surfboard and describes the independence that accessibility brings.

ADA-compliant pool, Benchmark's Turtle Bay Resort, Oahu, Hawaii.
ADA-compliant pool, Benchmark’s Turtle Bay Resort, Oahu, Hawaii. Photo courtesy of Benchmark Hotels & Resorts.

“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

Roll-in shower, Benchmark's Costa d'Este Beach Resort, Vero Beach, Florida.
Roll-in shower, Benchmark’s Costa d’Este Beach Resort, Vero Beach, Florida. Photo courtesy of Benchmark Hotels & Resorts.

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 Disney Parks 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

CRUISES
A recent study by the Open Doors 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 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.”

Oasis of the Seas
The Oasis of the Seas, Labadee, Haiti. Photo courtesy of Royal Caribbean.

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 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.”

Royal Caribbean's Quantum of the Seas accessible balcony stateroom.
Royal Caribbean’s Quantum of the Seas accessible balcony stateroom. Photo courtesy of Royal Carribean.

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 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

WHERE TO CRUISE
Pettit says that cruises that involve the 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.”

Royal Caribbean Allure at Port Everglades.
Royal Caribbean Allure at Port Everglades. Photo courtesy of Royal Caribbean.

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 non-tender port, and St. Thomas also has a dock.”

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

RAIL TRAVEL
Rail travel has its advantages for those 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 long-distance 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 seeing scenic portraits of cities, prairies, and the Rockies, while being comforted by having a quiet time.

(Top) Indian Pacific train journey across Australia. (Left) Via Rail Canada, Toronto-Vancouver route. (Bottom) Via Rail Canada, Montreal-Halifax route. (Right) Via Rail Canada, Montreal-Halifax route.
(Top) Indian Pacific train journey across Australia. Photo © Great Southern Rail. (Left) Via Rail Canada, Toronto-Vancouver route. (Bottom) Via Rail Canada, Montreal-Halifax route. (Right) Via Rail Canada, Montreal-Halifax route. Via Rail photos by Bianca Courtemanche.

“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 gluten-free 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

AIR TRAVEL
Getting as much information as possible 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 flyer 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 people 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 two-hour 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 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.

AIRPORT SECURITY
Candy Harrington advises those who 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 oxygen 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.

DRIVING
For some travelers with chronic conditions, especially those traveling with oxygen, driving can provide the most stress-free 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.”

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.”

 

See Part 2 of our accessible travel story, highlighting some of Washington, D.C.’s top accessible attractions!

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Help Others by Sharing Your Story with CVC

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Your words can make a difference. You can inspire others and let them know that they’re not alone when you share your story with the Caring Voice Coalition community. You can share what’s important for new patients, caregivers, and medical professionals to know about living with rare and chronic illness. And you can tell other patients how you came to CVC and what your experience has been. No story is too big or too small.

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In Your Words: Carrie Beth and Asher

Posted on by Charlie

Carrie Beth Pretto’s son Asher’s infantile spasms (IS) were diagnosed two years ago. A year after brain surgery, multiple medications and doctors’ visits, he is now seizure-free. Pretto describes the challenges they’ve overcome, and still face, and offers advice on finding support, treatment, and resources for IS.

Asher was diagnosed with infantile spasms on November 11, 2011. He was six months old.

A week prior to his diagnosis, Asher began having unusual eye patterns and jerking body movements. He would lean forward and then throw his head back and arms out wide.

As we began to notice this wasn’t just a one-time occurrence, we became concerned. Over a week’s time, the jerking motions and eye rolling developed into clusters, occurring more often throughout the day.

I made a call to our pediatrician, who immediately ordered us to have an EEG performed. While there, I overheard nurses comment, “This is classic IS,” not knowing the least bit about what they were referring to.

Within hours, we were sent to a local pediatric neurologist. I can still see the look on the doctor’s face when she walked into the room. It was not your usual first greeting from your doctor. Her face was filled with sadness and disappointment.

After examining Asher and reviewing the EEG, she diagnosed him with infantile spasms. The doctor stressed the need for starting treatment immediately to prevent prolonged damage to Asher’s brain and the associated developmental delays.

Although we knew nothing about IS, we could sense this was a serious matter and obediently agreed to any recommended treatment. The first step was to stop the spasms, and then continue trying to diagnose the cause of the spasms via MRI and other methods.

We were told the best case was that nothing abnormal would be found, and in that case, he’d likely grow out of the IS. The neurologist kept commenting that she hoped it wasn’t tuberous sclerosis complex (TSC). Again, something we had never heard of before.

The doctor prescribed a very expensive medication that was made-to-order out of Chicago and wouldn’t be released to us until a nonprofit organization agreed to assist with the co-pay. Within three days, we received the medication and began administering it via injections twice a day for 60 days. A nurse administered the first injection, but I was left to provide the injections from then on in his poor little thighs.

Again, step two was to determine what was causing the IS, so throughout his period of treatments, Asher underwent numerous tests such as MRI, ultrasounds, cardiology exams, blood work—it seemed endless. During this time, our poor son ballooned from the steroids, going from 15 to 20 pounds in only seven weeks.

The medication stopped the IS within three days of the first injection, but while weaning him off the treatment in the final weeks, we observed a different type of seizure develop, one in which he lost emotion while looking up and away. The neurologist prescribed new medications in various combinations and doses to stop the seizures, each unsuccessful.

Approximately two months after Asher was first diagnosed with IS, the neurologist delivered a diagnosis of tuberous sclerosis complex, based on the findings on the MRI. Tuberous sclerosis complex (TSC) is a genetic disorder in which the DNA lacks either one or both of the genes that suppress tumor growth in many of the major organs.

Currently Asher is only showing the TS characteristics of tumor growth on his skin and brain, which account for his uncontrolled epilepsy and developmental delay.

From this point, we were referred to the TSC clinic at UT Medical Center in Houston, Texas, for further treatment. There, we met with multiple neurologists and a geneticist, who prescribed another round of medications to control the seizures.

Finally, on November 5, 2012, Asher underwent an occipital resection on the left hemisphere of his brain to remove the largest tuber, [occupying] roughly 10 percent of his brain, that was causing his epilepsy.

With our weekly schedule of occupational, speech, physical and autism therapy, Asher is thriving, despite the setbacks that we have faced over the past two years.

After two years of multiple medications and doctors’ visits, Asher has now been seizure-free since his brain surgery just over a year ago. It is such a blessing that we can now say our little guy, at the age of two and a half, is actively catching up and accomplishing new milestones everyday.

Asher is a busy little guy. When not at therapy, some of the things he enjoys are swinging, going for wagon rides, running outside, doing puzzles, listening to sing-a-long songs, anything to do with shapes, playing peek-a-boo, coloring, jumping on the bed, and airplane on daddy’s feet, and he loves tubby time (bath time).

Some of the biggest challenges have been his lack of and delays in ability to communicate and show emotions and expressions of love, public outings, such as shopping and restaurants, tending to another child while home, what kind of care to give him and how to get it, as well as therapy, treatment plans for long-term care, limited medical coverage for behavioral therapy, rareness of the disorder and limitations of knowledgeable staff close to home.

For the parents of those who are newly diagnosed, it’s important to educate yourself quickly through only credible resources—the internet can be very misleading—and to find a neurologist who is knowledgeable in diagnosing and treating IS. Technology is also very important—they must have the right and most up-to-date tools.

Be prepared to make difficult decisions, whether it is in regards to medications and their harmful side effects, or the onset of developmental delays. Nonprofit companies are available to help you when in need. Support groups are out there … you are not alone.

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We Can Be Heroes: Patricia George, M.D.

Posted on by Charlie

Patricia George, M.D.Patricia George, M.D., spoke with Community about her work in pulmonary transplant medicine, her HIV-PAH research, and her motivation as a member of PHA’s four-woman Team PHenomenal Hope in the nine-day 2014 Race Across America.

Going into medical school, I had passion for and experience in immunology research, so transplantation was something in which I was always interested. And like many who go into pulmonary medicine, I was initially drawn to it through my medical school and residency rotations in the medical intensive care unit. I enjoyed pulmonary physiology, and the work and pace of critical care medicine.

In addition, as a medical student, I met a patient with cystic fibrosis awaiting a lung transplant in the medical intensive care unit. I got to know her and her mom, and some of her life story, and wanted to be able to help people like her with lung disease. So that led me to pulmonary medicine and pulmonary transplant medicine.

My research involves looking at the mechanisms of HIV-associated pulmonary arterial hypertension (HIV-PAH). Pulmonary arterial hypertension is quite rare, however in patients with HIV, it affects at least 0.5 percent, and perhaps more, according to recent studies. That’s at least one in [every] 200 patients!

Advances in HIV care have changed the landscape for people with HIV, and many now label HIV a chronic disease. So medical complications, like HIV-PAH, become extremely important to study and hopefully help people live longer and live better.

Team PHenomenal Hope came together with people passionate about cycling and raising awareness. As an avid cyclist, it had long been a dream to someday race in the Race Across America (RAAM).

Stacie Truszkowski, one of my close friends in the cycling community, also shared this dream. So, in 2011 and 2012, Stacie and I reached out to our endurance cycling friends whom we thought might be crazy—er—passionate—enough to do this as well, and in 2012, with the addition of Anne-Marie Alderson, Ryanne Palermo, and Kate Bennett as our crew chief, our four-woman cycling team was born.

We organized this Pittsburgh-based team, met with our friends at PHA, as well as our earliest sponsors, and formed Team PHenomenal Hope. Later that summer, we added to this group Greta Daniels, assistant crew chief and alternate racer, and Sara Harper, alternate racer and crew.

Our mission is to dedicate our training and racing to those who live with pulmonary hypertension, to raise public awareness about the disease, and to raise funds to find a cure.

For more articles like this, click here to subscribe to COMMUNITY magazine!I started biking during pulmonary fellowship. I wanted to get back in shape, and a new women’s cycling team called Steel City Endurance was forming. I joined them in the inaugural year, and became totally enamored with biking and bike racing and met a lot of really neat people.

I enjoy being outside, escaping the stresses of my sometimes hectic lifestyle. As for endurance cycling, I enjoy pushing my body and mind to some sort of limit. It allows you to lose yourself in the present—how you’re feeling at that time.

We’re working with our team coach, who’s helping coordinate our training schedules so that they build and peak at the right time. Training is about consistency—getting the workouts in, getting stronger every day (except rest days). Eating healthy and getting enough sleep are crucial too.

As a team, we’re racing the whole race as a relay. To make the time cut-off and make it to the finish line as fast as we can, we divide up the ride into 20-to-30-minute segments.

On a four-person team, typically two riders will be out on the road, trading places in 20-to-30-minute pulls (one riding, the other in a support vehicle leapfrogging ahead for the exchange to happen). This pair of the four-woman team will ride for four to six hours, while the other pair rests, eats, sleeps, and recovers. It goes 24/7, from the time the gun goes off until we cross the finish line.

From what I hear, mental toughness will be one of the biggest challenges during RAAM. Those who have done it say that, at about day four or five, the sleep deprivation kicks in, and the reality of the Midwest flatlands also hits you. I know there is beauty in rolling plains, but at that point in the race, it may be tough to see it.

During RAAM, the crew is the essential group of people that will get us from Oceanside, California, to Annapolis, Maryland. The crew chief, Kate Bennett, is in charge of coordinating the drivers, navigators, medics, mechanics, nutrition, making sure we’re on course, and that people— including crew—are getting enough sleep, food, etc. A race with this relay between four racers, moving across the country with an RV, two support vehicles, and 13 crewmembers is quite an undertaking.

The greatest source of inspiration is the PH community. When I think about how hard it may be to be on the bike, mentally or physically, I think about what my patients go through on a daily basis.

Team PHenomenal Hope members Ryanne Palermo, Patty George, Stacie Truszkowski, Greta Daniels and Kate Bennett.
Team PHenomenal Hope members Ryanne Palermo, Patty George, Stacie Truszkowski, Greta Daniels and Kate Bennett.

I get to choose to ride my bike, to push myself through discomfort. My patients don’t have such a choice. They wake up and live with pulmonary hypertension every day, and face whatever that day may bring, and many do so with such grace. So when I’m feeling less than motivated, I often think of people I know living with PH, and it motivates me to get this job done.

Likewise, in my practice, I am regularly reminded of the need for a cure. I often evaluate patients with pulmonary hypertension in need of a lung transplant. For this group of patients, they often no longer are responding to medications. It is a reminder that, while we have come so far, and many patients do respond to medical therapies, we still need a cure.

In my job, I also conduct PH research, and know firsthand how important funding is to exploring the frontiers in science. It makes it all the more important to me that Team PHenomenal Hope is raising money for PHA to fund grants and help other scientists have funds needed to find a cure.

We have something truly special with our partnership with the Pulmonary Hypertension Association. PHA launched a Race of Our Lives campaign, and we have been amazed how people in the community have organized their own Unity events, walking, riding their bikes, doing whatever they can to raise awareness about PH and join us in raising funds to find a cure.

Team PHenomenal Hope is bigger than four of us on bikes, or the 17 of us crossing the country. This is actually a huge team that spans coast-to-coast.

Pulmonary hypertension is a rare disease that can affect anyone, from children to adults, men and women, and people of all races and ethnic backgrounds. Initially, it is often misdiagnosed as another pulmonary condition, taking on average over a year to make the correct diagnosis and get the proper treatment.

Although it is a rare disease, it is important for doctors to at least think about pulmonary hypertension in their differential diagnosis when faced with a patient with shortness of breath, because without considering it, the diagnosis won’t be made.

Fortunately there are many medical treatments on the market, changing the prognosis for many who have this disease; however there still are people who do not respond to therapy, and to date there is no cure. Team PHenomenal Hope is working with PHA to do something to try to change that.

 Team members Palermo, George, Truszkowski, and Anne-Marie Alderson at University of Pittsburgh Medical Center.
Team members Palermo, George, Truszkowski, and Anne-Marie Alderson at University of Pittsburgh Medical Center.

 

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We Can Be Heroes: Shana Verstegen

Posted on by Charlie

Six-time log rolling and boom-running champion Shana Verstegen (née Martin) has been featured on ESPN, The Travel Channel, and Outdoor Life Network. Verstegen’s sports of choice demand a daunting blend of strength, balance, endurance, and agility.

Shana Verstegen
Shana Verstegen boom running.

The physical state that allows the 34-year-old athlete and fitness trainer to stay atop logs that are bobbing in water while spinning them with her feet, and win by making her competitor lose her balance is complemented by her training in pole vaulting, gymnastics, and karate.

In 1986, Verstegen’s mother, Deborah Martin, was diagnosed with Huntington’s disease. Martin succumbed to respiratory complications from the disease in March 2013. Verstegen, who married her husband, Peter, in November 2013, has not been tested for Huntington’s. Community spoke to Verstegen about her plans for the future, her mother’s legacy of strength and determination, and the freedom Verstegen finds in log-rolling.

I first learned about Huntington’s disease in our hotel room at the Mayo Clinic. My dad set out a bunch of materials provided by the Huntington’s Disease Society of America (HDSA) about what Huntington’s disease is, what to expect, and caregiving.

Shana Verstegen

My parents sat down and explained to me exactly what to expect over the next several years, and how my mom would lose her ability to walk, talk, and care for herself. But they also showed me all the research that was happening.

My dad said, ‘All these people are working really hard to make sure that your mom gets better.’

And then my dad flipped a coin.

He said, ‘These are your chances of also having Huntington’s disease.’

My question was, ‘Well, which one is it? Heads or tails?’ He said, ‘I can’t tell you that.’ But… he always went right back to: ‘All this research is happening.’

He truly believed they would have a cure before it came to my time. Unfortunately, they don’t yet.

I began log rolling at the YMCA swimming pool. I loved the fact that it was so unique and fun! Log rolling has always been my escape. As a child, when I showed up for practice, nothing else in the world, not even how sick my mother was, bothered me. It was my time to have fun with friends and do something I love. It still is!

What I think is most important for caregivers and those newly diagnosed with Huntington’s disease to know is that life is not over upon diagnosis. No matter what challenge we face, we all need to live life to the fullest and love and appreciate those closest to us.

With my career as a fitness professional and all of my athletic competitions throughout the year, daily workouts are part of my life. I don’t think of [the possibility of ] delaying Huntington’s disease while I exercise, just about having fun and performing well. If I do have the disease, of course, a delayed onset would be a wonderful benefit.

After my mom had to move into a nursing home for safety reasons in 1993, my dad and I made a promise to spend time with her at least once every week. This became our ‘family day.’

While she was still mobile, we would go on various adventures around southern Wisconsin and out to eat. When she was no longer able to leave the nursing home, we would spend time there, telling her about what was new in our lives and watching movies. After her passing in March of 2013, my dad and I continue this weekly tradition of family day.

My mother used her battle with Huntington’s disease to teach some very important lessons. She taught us to smile, to give, to be strong and independent and stubborn—to fight for what we believe in, to love unconditionally, embrace family, live every day to the fullest, and to sing.

My life is absolutely amazing now, and part of it is because I can hold onto hope. I fear a positive test result will take that hope away from me. But through my involvement with HDSA, I’ve met so many people who are positive with Huntington’s disease and are living their lives just as fully as I live mine.

This year may mark a change in my decision to not be tested, but that is a decision my husband and I will have to make after much thought.

As for the future, I will continue packing 30 hours into each 24-hour day, and working my hardest to do my part to find a cure for Huntington’s disease. I also, more than anything, want to become a mom.

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Understanding Your Disability

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Many persons impacted by a chronic illness reach a point where they can no longer work. To help allow for continued income and insurance, Caring Voice developed a Disability Program to help individuals understand the complicated issues involved in proving entitlement for disability benefits. By providing accurate information about Social Security programs and the benefits that you and your family may be eligible for, CVC provides guidance in determining whether applying for disability is right for you.

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We Can Be Heroes: Nicole Murray

Posted on by Charlie

Nicole Murray talks to Community about pairing her love of running with raising awareness and funding for her son Ronan’s infantile spasms (IS) and offers advice for parents of children who’ve been recently diagnosed with IS. Murray ran in the 2013 Philadelphia Marathon as an Epilepsy Foundation Athlete vs. Epilepsy.

Ronan, Jonathan, Nicole, and Declan Murray.
Ronan, Jonathan, Nicole, and Declan Murray. (Photo by Sarah Kaupp)

Ronan was officially diagnosed in late April 2012, at four months old, via video EEG, though he was having clinical spasms in March. It took nearly five weeks for his clinical spasms to evolve to infantile spasms and hypsarrhythmia on the EEG.

The moment he started having them, I knew they were IS. I had read about IS when I joined an epilepsy parent support group and had seen videos of children having IS, so I knew. It’s very different than other seizure types; they don’t look all that terrible, but they are incredibly catastrophic.

I’ve always been a runner. It has always been a great stress reliever for me. I knew that I could pair my love of running with raising awareness for Ronan’s condition, and that’s why I chose to run for the Epilepsy Foundation.

Ronan is defying the odds and breaking the rules. At ten and a half months old, he was not sitting, not babbling, and not self-feeding. He was having anywhere from five to 50 seizures daily. Since the morning of October 23, he has not had one seizure!

He had surgery three months ago, and he’s sitting unassisted, babbling, self-feeding, plus, starting to really bear weight on his legs. His development has taken off, and he’s so happy and alert, despite still being on two seizure meds.

The surgery did leave him with deficits, some of which will be permanent. Some of which, we’ll hope to overcome with intensive therapy.

He does have significant weakness/unawareness on his right side, as his entire left-brain hemisphere is now disconnected/removed, but he’s showing steady progress with arm recovery. His leg has recovered very well. He will have a permanent visual field cut. The right visual field of both eyes will never return.

Right now, we are working hard with seven-plus therapy appointments per week, and celebrating in each and every inch and milestone he’s making.

I’m now back to work, and his therapy schedule (and our other son) keep us very, very busy. I try to get out [to run] at least three, ideally four times a week.

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Running helps me feel strong, both physically and mentally. I also never take for granted that I have the physical abilities to run, as I’ve met many children now who cannot.

I don’t know [what marathons I’m running next]! I think I’ll probably be more inclined to sign up for a half marathon first. Training for a full marathon is a serious time commitment. Perhaps Philly again.

Regrettably, I have not been involved with the Epilepsy Foundation beyond raising money via the marathon. Eventually, I’ll become more involved, but right now, Ronan’s therapy and needs are intense. I am involved with several online support groups for infantile spasms and polymicrogyria, and the Hemispherectomy Foundation, among others.

You can follow Ronan’s journey and progress here: https://www.facebook.com/RonanRobertsFanClub

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We Can Be Heroes: Nicole Jeray

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LPGA golfer Nicole Jeray details her five-year search for an accurate narcolepsy diagnosis and how managing her narcolepsy has improved her game.

I first experienced symptoms of narcolepsy in college. I fell asleep in all my classes. My notes were a scribbled mess because I was asleep. I was fighting so hard to stay awake and listen to lectures.

Nicole Jeray competing in the Safeway Classic.
Nicole Jeray competing in the Safeway Classic.

I also fell asleep while driving. I took a special class in Chicago that was an hour-and-15-minute drive from campus, and I’d fall asleep every single time I drove back. I’d take the wrong exit and get lost going back to campus.

I fell asleep in the summertime driving to far away golf tournaments. I thought it was the exhaust from my old car. I’d roll the windows down and turn the music on high to help me stay awake. I guess I got used to being sleepy and fighting it—it just became a part of life. I had very vivid dreams and sleep paralysis in college. I thought this was normal, and my friends enjoyed hearing about my wild dreams.

I played lots of sports as kid. I was very athletic and had excellent hand-eye coordination. Golf was just another sport at first. When I was 15, I started working at a golf course, and it was then that I became addicted to the game.

For more articles like this, click here to subscribe to COMMUNITY magazine!It was five years between the onset of symptoms and an actual narcolepsy diagnosis, and I was only diagnosed because I developed severe cataplexy. In those five years, I went to several doctors looking for answers. ‘Overworked’ was the only diagnosis I received. I took vitamins and even became a strict vegan in an attempt to find more energy.

After a year and a half of eating this way, my symptoms never improved, and I developed severe cataplexy. I was lucky to see a doctor who listened to me and researched further to find an answer. Finally I heard the word ‘narcolepsy.’ One week later, I saw a neurologist and did a sleep study and found that I had a classic, textbook case of narcolepsy.

I was relieved that there was a name, and that I was not going to die. I would be able to continue to pursue my golf career. Little did I know, that day was only the beginning of a long roller coaster ride and a terrific education on life.

I have to force my mind to think about something else to try to prevent cataplexy. It stinks though, to not be able to enjoy the excitement like you want. I became quite good at remaining even-keeled, never too angry and never too excited. It’s built into my personality now.

Sometimes I picture that little kids might be watching, and I don’t want to scare them. It’s pretty traumatic watching someone suddenly become totally limp and fall to the floor. Becoming the center of attention and ruining a fun moment for people is no fun. It happened a lot, but diverting my attention would help.

Having narcolepsy taught me to appreciate each waking moment! I learned to set priorities. Important things must come first—when I have the energy.

I also learned how to say ‘no.’ I used to do everything that was asked of me, and more. Now, I do things that I actually enjoy and the things I want to do. Life is much happier and easier. Funny, it took getting narcolepsy to learn this.

I like that I’m more even-keeled. It’s less stressful, and less dramatic. I watch other people get so uptight about things, or make such a big deal over nothing. It seems unhealthy, and it drains energy.

My visualization skills have also improved. I must visualize and believe that I’m going to hit that shot just right. This way, when I do hit a great shot, it’s no surprise, and I don’t get so excited and have full cataplexy.

Narcolepsy also taught me how to take care of myself. When I do, my symptoms are much better. I drink plenty of water, eat the right things, maintain a sleep routine, good friends, and healthy relationships. It now baffles me that I didn’t do all these things before. Why does it take a life-changing disorder to figure out what the important things are in life?

I finished 113 on the LPGA money list in 2013—it’s the best I’ve finished on the LPGA since being diagnosed with narcolepsy in 1996. This position will get me into between 10 and 17 events in 2014. I’m also doing the Swinging for Sleep online fundraising campaign again in 2014 to promote narcolepsy awareness, research and patient support.

I care so much about my career that I must take extra care when it comes to managing narcolepsy. I must be extremely aware of how my body and brain feel so I can perform my best. I pay attention to the things that make me sleepier or more alert.

Golf helps narcolepsy in many ways. I’m outside and in sunlight, golf is active, and I set my own schedule. The longest I generally have to be alert and awake is about six to seven hours—which used to be extremely challenging before my latest medication change. I spend a lot of time in the gym because of golf. This has to help my narcolepsy.

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We Can Be Heroes: Michael Poole

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Community spoke with 22-year-old New Zealand champion triathlete Michael Poole about his sport, his love of adventure, and his discipline in dealing with epilepsy.

My epilepsy was first diagnosed when I was 17 or 18 years old. I was in two situations where I had grand mal seizures about 13 weeks apart.

Michael Poole racing in the 2013 Rev3 Half Ironman in Branson, Missouri.
Michael Poole racing in the 2013 Rev3 Half Ironman in Branson, Missouri.

It was a difficult time, as my sport involves activities (swimming and cycling) that have risk attached, but I had good doctors and great advice that I’ve followed very closely. The medication I’m on appears to have worked well too.

Growing up in New Zealand, there is every opportunity to be active. I played a lot of soccer early, but also loved running races. At 13, I started cycling and then did a couple of triathlons and realized I had to learn to swim a lot better.

Through some great coaching and lots of hard work, by the time I had left high school in New Zealand, I had won national titles in triathlon, duathlon, multi-sport, cycling, cross-country running, and road running. I had also represented New Zealand internationally in both cycling and triathlon.

For those newly diagnosed, I think it’s important to get as much accurate information as you can from experts. Don’t panic. Follow advice really closely. Don’t put aside ambitions. Talk about things when you are ready.

Some of the most important things I’ve learned from being an athlete are that it’s really hard work on a daily basis, and you have to take things one day at a time. I’ve been able to travel to a range of countries—China, South Korea, Japan, New Caledonia, Australia, Costa Rica, and Barbados, and to 20 cities in the U.S.—you learn a lot about people and places.

Being disciplined around my risk factors is hard—sleep, diet, remembering to take meds. Being concerned about misunderstandings can be hard too. I have to declare my condition on race entries, but so far organizers have been really good and low-key. When we were first working through that, it was hard, as the restrictions placed on me the first six to 12 months after diagnosis were strict for driving, cycling, and swimming.

I’m a full-time chemical engineering student at the University of South Florida. I have high expectations and work very hard. To be a full-time student, full-time athlete living in a country I did not grow up in has real challenges.

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I race often. On January 19, I raced in a world-class field in Auckland over a half-iron man distance. I then have more races in New Zealand and one in Australia before heading back to the U.S. in mid-February.

I will then look to race approximately 20 times across the U.S. during the year. It’s always challenging, as many world-class athletes come to the U.S. to race, but lots of learning and development are available. Financially things are also tough—I pay full international fees, plus away-from-home living costs. Triathlon is an expensive sport in many ways—getting sponsorship is tough—and the major results do not come until your mid to late twenties. So a week-by-week challenge is finding enough financial backing just to keep moving forward as a student and an athlete.

What is most rewarding about being a triathlete are the challenges of continuous improvement and the overcoming of all the strategic life problems that go with the sport. It is a very difficult sport.

I offered my profile to the Epilepsy Foundation to assist in any way they saw fit, and their Athletes vs. Epilepsy initiative fits really well. If I can in some way encourage people with epilepsy to be out and be active, it can only be a good thing. People are very welcome to contact me through: www.facebook.com/michaelpooleprofessionaltriathlete

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We Can Be Heroes: Jake Dowell

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Jake Dowell on the ice for the Iowa WildAmerican Hockey League player Jake Dowell is center and team captain for the Iowa Wild. Dowell’s father, John, and his brother, Luke, have Huntington’s disease, and are cared for in an assisted living facility. Dowell has not been tested for Huntington’s. Community spoke to Dowell about the challenges his family faces and the escape that hockey gives them.

The first thing that drew me to hockey was that my older brother wanted to play. It was a sport that didn’t come naturally to me, like baseball or football, and my dad wouldn’t let me quit. He wanted me to have to work through something and have the feeling of achievement once I did see progress.

What I enjoy most about hockey is the release that it gives me. I have dedicated most of my life to it and to get to the NHL. Having that chance to play in the best league in the world has been what makes it fun and always worth the tough times when it seems so much like just a job.

If I wasn’t playing hockey, I think I’d be a guidance counselor at a high school. I like to work with kids and think that I have the ability to relate and help kids that need a little direction in their life.

I first learned about Huntington’s disease when my dad was diagnosed when I was in high school. At the time, I was living with a host family in Ann Arbor, Michigan, while I was playing hockey, and my parents were in Wisconsin. So it made it a little more rough to handle news of that level and not be able to be around to help or understand completely what our family was in for at the time.

Hockey has always been a stress reliever for me and lets me get away from the family issues and personal issues off the ice. It has also been a way that my whole family has been able to have a little getaway from Huntington’s disease by coming to see me play or watching me play on TV.

Caregivers are the most important people in this whole thing. I admire my mom and what lengths that she has gone through and sacrificed of herself in order to make sure my dad was always the main priority and taken care of.

With that said, it has been extremely hard on her, and if I can give any advice, it would be to make sure you take some time for yourself to still have a life of your own with friends and family. It is so stressful on the caregiver, that if you don’t take time for yourself, your own health may start deteriorating.

I go and see my dad and brother as much as possible in the summers. I don’t see them during the hockey season much, and now they are at the point that neither can say much. My dad is completely dependent on people to help him move or do anything, so we really just sit there, and it’s pretty quiet, but I know he enjoys the company. And the same goes for my brother.

I have learned a lot from my dad and brother over the years, but they have been sick for so long that the main thing I take from them is that even though they were both handed an extremely difficult and miserable disease, they never complain, and they just deal with it.

My mom has taught me more than I can really put into words, but if I had to point out one thing, it is how to handle adversity and how to put others’ needs first. And if I could teach my mom one thing, it would be to learn to balance when to put her own needs first once in a while.

I met my wife when I was first out of college at the University of Wisconsin. I was starting my professional career, and she still had a couple years of school left. We were drawn to each other initially because we had mutual friends, and we really just over time started spending more and more time together. I found myself coming back to Wisconsin whenever I had a break, For more articles like this, click here to subscribe to COMMUNITY magazine!or she would come down to Rockford, Illinois, where I was playing at the time, and it just went from there.

I am happiest when I am with my wife, Carly, and our English bulldog, Gus, and with our friends and family. I have found myself really reaching out and having a number of extremely close friends that my wife and I spend a lot of time with, and sometimes that fills the void of not having my dad or brother around to spend time with. I have also gotten extremely close with Carly’s dad. He is someone I look up to and has filled a father figure void for me as well.

We plan on having children in the future—we just don’t know how distant in the future it will be. I need to get tested for Huntington’s disease before we try to have children, so that complicates things a bit.

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We Can Be Heroes: Sarah Winckless

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Sarah Winckless and her Mother, Valerie
After winning the bronze at the 2004 Olympic Games in Athens, rower Sarah Winckless ran past security to place her medal around her mother’s neck and her laurel wreath atop her head.

In 1996, British rower Sarah Winckless’s mother, Valerie, was diagnosed with Huntington’s disease. Soon after her mother’s diagnosis, Winckless herself tested positive for the Huntington’s gene mutation. She went on to win two world championships and to compete in three Olympics, winning the bronze medal in double sculls with partner Elise Laverick at the 2004 Olympic Games in Athens.

Retiring from rowing in 2009 to pursue other challenges, in 2010, Winckless climbed Mt. Kilimanjaro with her brother, Charlie, and in 2012 completed a bike ride between London and Paris to raise funding and awareness for Huntington’s disease. She is now a motivational speaker, coach, regatta umpire, British Olympic Association Athletes Commission Chair for Sochi 2014 and Rio 2016, and patron of the Scottish Huntington’s Association.

Winckless’s mother now requires 24-hour care, but was able to watch Winckless receive her Helen Rollason Sportswoman of the Year Award for Inspiration in December. In a 2010 interview with Scotland’s Daily Record, Winckless said, “My Olympic effort was nothing compared to what my mum battles with every day of her life.”

Community spoke with Winckless about recent developments in Huntington’s research, the importance of positive thinking, and her plans for the future.

Sarah Winckless (right) with double sculls partner Elise Laverick
Sarah Winckless (right) with double sculls partner Elise Laverick

What I think is most important for those newly diagnosed with Huntington’s disease to know is that anything you’re feeling is normal. There’s no right or wrong way to deal with it.

For me, knowledge is power—to understand enough about the disease to know that there are some things you can control. We have a duty to take care of ourselves by exercising, eating, and sleeping well. Look for the bits you can control and enjoy controlling those areas.

Sport will always be something that lifts me and makes me feel better. I run, cycle, and row. I exercise about seven or eight hours a week. [If exercise can result in a delayed onset of Huntington’s disease] it gives me a great excuse.

My mother taught me things. She did really well. She has an absolutely brilliant spirit. She used humor, keeping it light, laughing at herself at times. I guess it’s called black humor.

Mum got diagnosed in 1996. I could clearly see that something wasn’t working. When I got the name ‘Huntington’s,’ it really helped me.

For me, testing positive didn’t feel any worse than being at risk. I wanted to get the test done as quickly as possible. It was a very simple decision for me.

For more articles like this, click here to subscribe to COMMUNITY magazine!Becoming a Huntington’s disease advocate was never intentional. I didn’t see myself doing that. Just before the 2004 Olympics, it felt like it was the right thing to do, to tell a positive story.

As patron of the Scottish Huntington’s Association, I do what I can for Scotland. It gives me huge strength as well, and I have the privilege of working with some amazing young people.

For me, climbing Mt. Kilimanjaro was a double-pronged motivation. It was a real opportunity to do something different, something special, while spending seven days with my brother and doing something for my charity.

I also wanted to see what my body would do at that altitude. At 4,700 feet, I was happy. Then, I got the worst headache I’ve ever had in my life. I redecorated Kilimanjaro by being sick, but my brother and I both made it to the top.

My dad and stepdad were rowers. I also did discus and played basketball at Cambridge. I started to row, and it was brilliant to already be a trained athlete trying a new sport. Gladiatorial side-by-side rowing is, I think, what I was born to do. It fit my physiology and my psychology.

When you do sport, you find yourself, in a deep, psychological way. You find out how to think positively. My thinking affects my feeling. I believe you can choose your mood, although some days are more difficult than others.

As a motivational speaker, I talk very much about setting your goals high. We’re all capable of more than we think we are. Get on the start line and have a go.

Where does courage come from? I think it’s really unique. Quite often, we need someone else to give us that first push. If you’re someone who finds it within yourself, tap into that. Be accepting that we’re all different.

In the past, the huntingtin protein has been seen as the enemy. Now we see it as the body’s defense. As understanding and the ability to study the gene gets greater, it’s an exciting time for science. I do a lot of work with the brain. I am always tempted to study more, but that’s not the path I’ve chosen.[Having studied chemistry at Cambridge] for me it’s been a really interesting dance with how much I look at research. I am incredibly excited at some of the developments in the last few years. The possibility of turning off the gene not long ago would have been considered a sci-fi type of thing, as would passing drugs through the blood-brain barrier.

I’m asymptomatic, touch wood, [but] I would absolutely participate in clinical trials. I’m in some of the studies. I’d love to be part of the solution in that way.

I’ve got hundreds of plans for the future. I’ve loved working in elite sports. I enjoy leadership, coaching to top business people and top junior athletes, helping others to be as good as they can be.

I’ll be the keynote speaker at the CHDI conference in Palm Springs in February. I’ll also be picking the brains of some of the scientists there. It’s always inspiring being around high performers.

In the HD community, I’m looking forward to the anniversary of SHA, the Scottish Huntington’s Association, which will be twenty-five years old on November 21. I’ll be doing summer camp for young people in July and a 40K run in March in Sweden for a young persons’ group there.

I’ve also just been given an allotment (a plot of ground given to citizens by the British government for planting), and I will be perfecting the art of vegetable growing. For someone who’s come from a competitive environment, the pace is probably a bit different.

Everyone has good days and bad days. Grab and enjoy the good days. Be good to yourself on the bad days.

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