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A 32-Year-Old Had A Stroke: Could It Happen To You?
Deanna and Rebecca Sherman
As many as 15% of Americans have a blood disorder (called anti-phospholipid antibody syndrome – APS) that can increase their risk for blood clots and stroke. While these antibodies are especially common in people with certain auto-immune diseases like SLE (systemic lupus erethematosis – or “lupus”) quite a few people have them without ever knowing it. In fact, most people with APS remain asymptomatic their entire lives – but for an unlucky few, the disorder can cause devastating consequences.
I interviewed Rebecca Sherman about her recent stroke caused by APS. Listen to the podcast here.
Dr. Val: Tell me about the events leading up to your stroke.
Sherman: I was a young, healthy 32-year-old with no idea that I had anti-phospholipid antibodies in my blood. One morning when I was washing my face at my boyfriend’s house I suddenly noticed that one side of it was frozen. I was standing in front of the bathroom sink and I fell to the floor with the washcloth in my hand. I couldn’t walk or talk – the whole right side of my body didn’t do what I wanted it to do. So I threw the washcloth at my boyfriend’s head (with my left hand). Luckily my aim was good (he was asleep in bed) and the bed was near the door to the bathroom – the cold, wet object caused him to jump out of bed and find me. Read more »
Davis Phinney And Parkinson’s Disease
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Davis Phinny |
Davis Phinney has won more cycling races than any other American. He is charming, articulate, handsome, and requires a deep brain stimulator to keep him from experiencing incapacitating tremors. Davis was diagnosed with Parkinson’s Disease at age 40.
I attended the Parkinson’s Action Network 15th Annual Morris K. Udall Awards Dinner in Washington DC last week. Davis was interviewed by Diane Rehm and I recorded the conversation for my blog readers. It was an exceptional interview.
Davis explained how he was initially diagnosed – he felt tired, slow, experienced foot cramps and began tripping more frequently. As a young, seemingly invincible athlete who worked long hours, he assumed that he was just tired and in need of a massage. Eventually his symptoms became so persistent that he went to see a physician. After many tests and many different doctors examined him, a retired neurologist made the diagnosis. Davis says that it was a tough blow to his family. He felt as if he were Superman, now saddled with a permanent kryptonite necklace. Read more »
War Amputees And American Culture
At the recommendation of my dear friend and fellow blogger, Dr. Ramona Bates, I attended a lecture entitled, “Limb Labs: Getting Amputee Soldiers Back to Work After World War I.” The lecture was held at the National Museum of Health and Medicine on the Walter Reed campus in Washington, DC. Both lecturers (Beth Linker and Jeffrey Reznick) did a wonderful job of transporting the audience back in time, outlining the cultural beliefs and historical context of the day. This is what I gleaned from their commentary:
Roughly 100,000 men became amputees as a result of injuries from the American Civil War (1861-1865). At the time there was no government-sponsored program to fit amputees with prosthetic limbs, so veterans were on their own. Prosthetists catered to the middle and upper classes who paid cash for their custom prostheses. Veterans of lesser means could only afford a peg leg, and some would sell photos of their stumps (like baseball cards) to support themselves. Many veterans were not effectively reintegrated into the work force after their injuries, and were considered “charity cases” by the American public.
By the time World War I began, there was significant social stigma associated with amputation. Peg legs and hook arms were synonymous with “blood thirsty villains” like Captain Ahab from Moby Dick, and Captain Hook from Peter and Wendy. As America braced for a fresh round of young amputees, the government prepared occupational rehabilitation programs in an attempt to reduce deliquency among injured veterans. An entire PR engine was developed to set expectations that veterans would become “active workers, not charity cases.” And authors like John Galsworthy, began describing the vocational reintegration of war heroes as “sacred work.”
Around the turn of the 20th century, technology had advanced to allow mass production of various goods. Factories were created to produce large quantities of standardized items like clothing, and the corresponding reduction in cost revolutionized the standard of living for many poor and middle income Americans. Not surprisingly, enterprising individuals looked for ways to mass produce costly, custom products – and be the first to market with a new, affordable option.
Seizing on the opportunity that World War I created (i.e. a new market for prosthetic limbs), a couple of orthopedic surgeons recognized an opportunity to take over the prosthetic limb market by creating a “one size fits all” solution that they could sell to the government. The government was eager to avoid the costly mistakes of the Civil War (i.e. not having a plan for reintegrating young men into the work force), but couldn’t afford the prosthetist’s fee of $200 per custom prosthetic limb. The “E-Z leg” was born, and at a cost of only $20 per prosthesis, it seemed like a steal.
The E-Z leg solved a few problems for the government – 1) it allowed injured veterans to walk off the ships (instead of being carried on stretchers) that brought them home from Europe, thus minimizing the public appearance of the toll of war 2) it allowed them to offer cosmetically appealing prostheses, rather than peg legs, to amputees 3) it increased the vocational rehabilitation potential of veterans.
Of course, the “E-Z leg” didn’t have the best marketing ring to it, so it was rebranded the “liberty leg” and hailed as a triumph of modern technology. In reality, though, it wasn’t much of a functional improvement over a peg leg. In prosthetic design, a “one size fits all” approach ensures that no one gets a truly good custom fit. But psychologically, the veterans were pleased to have a cosmetically appealing limb, and most had no idea how much better a custom limb could be. The public was satisfied by the government’s generosity, not realizing that the government had actually budgeted $75/amputee at the beginning of the war. What happened to the $55 savings? We’ll never know.
One thing’s for sure, the orthopedist owners of E-Z leg made out like bandits. John Galsworthy became so disillusioned with his push for “sacred work” that he wrote, “Empty promises and rhetoric of heroism… The war killed the self-importance, faith and idealism in me.” He never spoke of vocational rehabilitation for war veterans again.
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As I watched the NBC nightly news yesterday, I noted an interview with a young Marine recovering from bilateral leg amputations (caused by an IED explosion in Iraq) at Walter Reed. When asked if he was worried about walking again he simply replied, “I don’t worry about that. With the artificial legs they have these days, I’ll probably be better than ever.”
And I thought to myself, “the more things change, the more they stay the same.”This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
Disney Goes The Extra Mile For People With Disabilities
If you or your friends or family have a disability, there’s no reason you can’t enjoy a vacation at Disney World. This post is a continuation of my interview with Bob Minnick, the Technical Director of Global Accessibility and Facility Safety at Walt Disney Parks and Resorts. He explained to me how Disney theme parks are committed to providing access to guests with disabilities. I’ve captured some highlights from our discussion here, and then summarized the services offered to guests with disabilities.
Dr. Val: Why is Disney so committed to universal access?
Minnick: Walt was all about guest service – he wanted the place to work for everybody, even guests who have unique needs. Our mantra is “guest service,” not “compliance.” We do things because it’s the right thing to do. For example, we were building wheelchair-accessible rides long before the ADA (Americans with Disabilities Act) became law. Also, we won’t patent a ride vehicle design because there are only so many ways to make rides accessible. If we invented a great idea and patented it, then nobody else could use it. Since we’re about creating access for everybody, we don’t mind if people use the idea or approach to improve the world we live in for people with disabilities.
Dr. Val: This must cost a lot – what’s the business case for it?
Minnick: I’m truly blessed to work for a company that “gets it.” We want to bring our guest service amenities to everybody. It’s the right thing to do, and it’s the Disney brand. For us, it’s worth the investment to give everyone the opportunity to experience the joy and magic of Disney parks. All the senses are stimulated at Disney – scents, sights, sounds, and touch and we want to enable as much of the sensory experience as we can for all our guests.
Dr. Val: Do any of your competitors go out of their way like you do to accommodate guests with disabilities?
Minnick: Many in the industry are doing a great job accommodating their Guests with disabilities. We have some unique services that many of them don’t offer. For example, the reason why we provide hearing and visual aids is that our rides are designed to tell a story. You can build an iron roller coaster to create a “motion” experience of being turned upside down and thrown about. But we tell a story with our rides and we want to bring that story to life for everybody.
Services for Guests with hearing disabilities
Sign language interpretation is provided at many shows, 2 days a week at all of the parks (except Animal Kingdom).
Assistive listening service (ALS): amplified audio and captioning technologies are bundled into a Blackberry-sized device that is free of charge and may be carried throughout the parks.
Services for Guests with visual disabilities
Audio Description: Visually impaired individuals can listen to a description of what’s happening on stage or in the shows in between the audio narrations. It is also equipped with a GPS module so that as the guest walks around the park, it offers a way of finding information and tells you where you are.
Braille is available on most park maps. There are Braille guide books available as well.
Services for the Guests with mobility disabilities
Seated parade viewing – special roadside sections exist for guests in wheelchairs so that they get a clear view of Disney parades without other guests standing in front of them.
Zero grade entrance to pools. Gentle slopes (rather than stairs) lead in to all water attractions. This facilitates wheelchair entry and is safe for young children.
Aquatic wheelchairs are provided as needed.
Accessible golf carts are available. They are designed to allow the seated rider to be raised up to standing level so they can swing a club more easily.
Special design features of rides. Many rides are designed so you can’t tell if a guest is in a wheelchair (this normalizes the experience, especially for kids). A special “spur track” feature takes the coaster car offline so that the guests with disabilities can take as long as they need to get in. Then the car rejoins the next line of coasters and enters the ride stream. Toy Story Mania is an innovative ride that provides an optional, closed-captioning service with a shooting mechanism designed for people who can push a button but can’t pull a trigger.
Practice vehicles are available just outside the entrance to various rides. Guests can practice transfers, and getting in and out of the ride vehicle before getting on the actual ride. They can even have pictures taken in the model vehicle.
General Services
Guest Assistance Cards are available to customize services to the needs of individual guests. Customized cards include requests for shade while waiting to enter a ride, the ability for parents to use strollers in lieu of wheelchairs for young children with disabilities, a front row seat pass, a pass to enter attractions via special entrances, and a green light pass for the Make-A-Wish Foundation participants.
Alternate entrances are available for all attractions so that guests with special needs may be ushered in discretely as needed. This design feature is particularly useful for guests with cognitive disabilities who cannot tolerate waiting in lines.
Dietary accommodations are made by Disney chefs trained to prepare food to accommodate special dietary needs.
Make-A-Wish Foundation is a partner of Disney’s. Children with terminal illnesses whose last wish is to go to Disney World are offered special accommodations and service, free of charge.
Emergency medical services are available at all theme parks in case a guest has an immediate medical need. EMS staff arrive within minutes of any distress call.
Bob Minnick summarizes it this way: “Walt Disney World is a place where everybody gets to be a kid. It levels the playing field for children with disabilities – even 60 year olds wear Goofy hats. Everyone’s having fun and acting funny, so it really normalizes the experience for guests with disabilities – because no one stands out or feels different from others.”
*For more information, visit the Disney guests with disabilities website.*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
