July|August 2014 Volume 24, Issue 4
A magazine dedicated to A Publication living well with limb loss of the
AA WalkWalk inin thethe ParkPark
Navigating Your Home Modification Choices
Going to Camp for the First Time
Hot Enough for You?
10 Air Travel Tips for Surviving a Flight SYMBIONIC ® LEG Move Naturally
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SBL3 inMotion 0714.indd 1 5/30/14 6:20 PM message from the editor
BE AN INFORMED READER
Accessible Housing Editorial content (articles, news items, columns, editorials, etc.) in & Transportation inMotion often contain healthcare information. As an informed reader, You Can Get There From Here you should never make a decision about managing or treating your condition without consulting your own clinicians: They know you best.
Sometimes, in our interviews with A man’s home is his castle; however, many seniors and people with disabilities people who are amputees, the person may feel like prisoners in their own home if they can’t move about like they being interviewed will say something could before. According to a recent housing survey, 83 percent of Americans age 45 and older would like to live in their current homes as long as possible. about his or her personal experience However, almost one in four expect that they or someone in their family will that may not be entirely consistent have trouble getting around that home within the next five years. A growing with standard practice. In these cases, trend to address this problem is the concept of universal design, which is we print what the person said because increasing in popularity for several reasons (see page 32). we think it gives readers insight into A that individual’s experience that we First, universal design promotes independence and prevents accidents. believe will resonate with others. But: Research shows that home modifications could prevent 30 to 50 percent of We urge you to always check with your all home accidents. Second, it looks good. People with disabilities don’t feel medical team before changing your like they’re settling for a personal nursing home. Finally, we all want more comfort and convenience in our homes, whether we have a disability or not. own healthcare regimen. People live longer than they used to, which means that more of us are, or will Advertisements in inMotion are be, living with disabilities. The traditional home that serves you well now, reviewed according to established while you’re healthy, won’t be so user-friendly when you’re older or if you criteria and guidelines. We aim lose a hand or a leg. to support public awareness of The ability to drive is equally important to our sense of independence. commercially available products – Driving means much more than simply getting from point A to point B. things that might be helpful to you When we lose our ability or license to drive, we lose a significant part of and to avoid advertisements that our life and identity. And personal mobility is more than just an individual might deceive or mislead the reader. issue. When transportation doesn’t work, other factors – our employment, Acceptance of advertisements in education, healthcare and economy – are affected as well. inMotion is not an endorsement by the Amputee Coalition. The Amputee But limb loss doesn’t mean the end of the road. With the proper equipment, education and training, vehicle modifications can provide a multitude of Coalition does not test advertised options (see page 20). products, conduct independent scientific reviews of them or ensure Home and vehicle modifications can open doors of opportunity to individuals their claims. Companies that sell who feel like they have lost their independence – you can still get there through the mail must comply with from here. federal regulations regarding customer notification if the product is not Bill Dupes, Senior Editor available within 30 days. The Amputee Coalition reserves the right to reject any advertisement for any reason, which need not be disclosed to the party submitting the advertisement. “Degrees of ability vary, but the basic principle remains the same: The degree of a man’s independence, initiative and personal love for his work determines his talent Opinions expressed in signed as a worker and his worth as a man. Independence is the only gauge of human virtue articles are those of the authors and and value. … There is no substitute for personal dignity. There is no standard of are not necessarily endorsed by the personal dignity except independence.” Amputee Coalition.
~ Ayn Rand, The Fountainhead Printed in the United States of America.
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 3 I’m POSSIBLE
Surfing, skateboarding, hanging with friends. Cameron Clapp epitomized “California teen” until one night when, in an instant, his life changed. At 15, Cameron was struck by a train. He lost both legs and his right arm.
Encouraged and cared for by staff at Hanger Clinic locations nationwide, Cameron not only learned to walk again, he now surfs, runs competitively, swims and inspires others through peer-to-peer mentoring and motivational public speaking.
In 700 clinics throughout the U.S., Hanger Clinic delivers integrated rehabilitative solutions to help more than 1,000,000 patients each year like Cameron turn their hopes and dreams into reality, break down barriers and move their lives forward. “IMPOSSIBLE IS AN To experience what’s possible at OPINION, NOT A FACT.” Hanger Clinic, call 1-877-4HANGER or visit www.hanger.com.
150 YEARS 700 CLINICS 1 VISION 1-877-4HANGER www.hanger.com
Hanger Clinic Ads_8.37x11.25.indd 1 8/16/12 9:17 AM contents July | August 2014
sections 16 The Doctor Is In Hot Enough For You? A Walk in 18 Travel & Accessibility Passing Airport Security Single-Handedly the Park 20 Federal Affairs Back on the Streets of New York 22 Growing Up as an Amputee Open Doors 24 34 Exercise & Fitness Abdominal & Gluteal Exercises
38 Perspectives Going to Camp for the First Time
S urviving a Flight: Air Travel Tips 30 departments 10 3 Message From the Editor 8 Advocacy in Action 11 Events Calendar 12 Limb Loss Awareness 13 Who Is Your Amputee Hero? Navigating 32 Your Home 14 Special Message Modification 36 Advertiser Index Choices On the Cover Image courtesy of Petra Tepper.
The Amputee Coalition recognizes the following National Sponsors for their valuable support.
Platinum Sponsors Gold Sponsors Silver Sponsors Bronze Sponsors The Board of Purdue Pharma Certification/ Accreditation Rusk (BOC) Rehabilitation at NYU Langone College Park Medical Center Industries Scheck & Siress
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 5 contributors
Cindy Asch-Martinis a Kevin Messner was born in certified personal trainer Guangzhou, China. At age 4 he was A Publication of the Amputee Coalition and lifestyle fitness coach, adopted and now lives in Arizona. Due InMotion magazine publishes unbiased journalism that seeks to “empower and motivate” living well and thriving and a left below-knee to a congenital birth defect, he had a with limb loss. The magazine targets amputees and their families and is provided free electronically to all friends of amputee. right knee disarticulation soon the Amputee Coalition and in hard copy to all subscribers. after his arrival. A high school Each issue covers health, well-being, exercise, life issues and Peggy Chenoweth is a left below- advocacy for amputees and their families. Stories showcase freshman and member of the amputees living and thriving with limb loss and profile knee amputee. She coordinates National Junior Honor Amputee Coalition programs and services. inMotion advertising sales and Society, he also enjoys maintains Facebook snowboarding, track and Editorial Board pages for the Amputee long-distance running. Coalition and the Orthotic Marshall J. Cohen Prosthetic Center. David McIntyre, MD, is a family Immediate Past Chair, Amputee Coalition Board of Directors practice physician. He is the lead Amy Di Leo is the founder of Lisa Ann Cairns, PhD physician at the Allina Medical Clinic in Senior Market Analyst for Smith & Associates Aim Hi Public Relations Faribault, MN. He writes ScottCummings, PT, CPO, FAAOP (AimHiPR.com) and has a monthly medical/humor Scientific & Medical Advisory Committee been a television and column for the Steve Custer print journalist for more Faribault Daily News. Production Manager, O&P Almanac for AOPA than 20 years. Lacey Henderson Leif Nelson, DPT, ATP, CSCS, is the Amputee Coalition Paddy Rossbach Youth Camp counselor Harleen Gupt Chhabra is an artist, assistant chief of clinical care for VA/ writer/ blogger, a communications Jason T. Kahle, CEO, CPO, FAAOP DoD Extremity Trauma and Amputation OP Marketing and marketing advisor for a Fortune 5 Center of Excellence (EACE). He is a Stephen Luce company and a mother (harleengupt. doctor of physical therapy, a certified Associate Director for Communications, CDC com). Drawing from her almost lifelong assistive technology David McGill above-elbow amputee experiences, professional, and a Vice President, Reimbursement & Compliance for Össur she is working on certified strength and children’s books and Nancy Miller conditioning specialist. Marketing Communications Specialist parenting resources for Leslie Pitt Schneider the limb loss community. Eric Westover is a below-elbow Amputee Coalition Board of Directors amputee. He is the goalie for the U.S. Taylor Haines is a junior at East National Amputee Soccer team and Anchorage High School is a disability advocate, inspirational Staff and a left below-knee speaker, coach and consultant. Susan Stout amputee. She loves Contact him at Interim President & CEO dancing, sleeping [email protected] Mary Beth Gibson Chief Marketing & Communications Officer and hot yoga. or visit his Web site at Bill Dupes ericwestover.com. Managing Editor, inMotion
Élan Young is a freelance writer living in inMotion is published six times a year by the Amputee Coalition, 900 E. Hill Avenue, Suite 290, Knoxville, TN 37915-2568. Send address Walland, Tennessee. changes and other requests to the Amputee Coalition at this address. Coming up in the Print subscriptions to inMotion are $24 per year. This publication (journal article, etc.) was supported by the Cooperative Agreement September/October Number 5U59DD000904-03 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and issue of inMotion: do not necessarily represent the official views of the CDC, the sponsoring organizations, or the Amputee Coalition. It is not the intention of the Amputee Coalition to provide specific medical advice but rather to provide Healthcare readers with information to better understand their health and healthcare issues. The Amputee Coalition does not endorse any specific treatment, technology, company or device. Consumers are urged to consult with their healthcare providers for specific medical advice or before making any purchasing decisions involving their care. No funding from the CDC is used to support Amputee Coalition advocacy efforts. ©2014 by Amputee Our Mission To reach out to and empower people affected by limb loss to achieve their full Coalition; all rights reserved. This magazine may not be reproduced in potential through education, support and advocacy, and to promote limb loss prevention. whole or in part without written permission of the Amputee Coalition.
6 inMotion Volume 24, Issue 4 July | August 2014
advocacy in action
Arms and Legs Are Not a Luxury We Need Your Help!
by Dan Ignaszewski
Summer is now in full swing, and there couldn’t Why does this matter? be a better time for you to make a difference and While insurance companies cannot put an annual have a positive impact for amputees throughout the or lifetime dollar limit on the overall plan, they can United States. Regardless of what you may think continue to put an annual dollar limit and a lifetime about the Affordable Care Act (AKA “Obamacare”), dollar limit on spending for healthcare services that the fact remains that it is an integral part are not considered “essential.” Therefore, because of the healthcare system we currently most states did not explicitly include prosthetic Soperate under. devices in their Essential Health Benefits, insurance plans can still put an annual dollar limit and/or a With that in mind, there is a major issue impacting lifetime dollar limit on spending for those devices. amputees regarding the implementation of the Affordable Care Act that we need your help to This means that many states still allow or have limits change. In 2010, when the law was passed, several on coverage, such as in the New York exchange for members of Congress expressed their intent to example, where all of the plans offered under the include prosthetic and custom orthotic devices in insurance exchange have a restriction of “one limb the Essential Health Benefits required by the law. per lifetime.” There are other states that restrict the Unfortunately, while every state has at least some dollar amount for devices, and some states where level of coverage for prosthetic devices, very few their insurance exchange plans exclude things such as states explicitly included prosthetic devices in their “bionic,” “biomechanical,” “robotic,” “power-assisted Essential Health Benefits. limbs” or “computerized” devices.
8 inMotion Volume 24, Issue 4 July | August 2014 What is the Amputee available for meeting requests to Coalition doing? discuss issues that are important to The Amputee Coalition has been their constituents. working to raise awareness of this issue since the passage of the law. We need you to bring this We’ve written public comments issue to the attention of your to Health and Human Services federal legislators. (HHS) and the Center for Medicare The Amputee Coalition has Services (CMS), as well as to state information available on the governors, legislators and insurance “Advocacy and Awareness” section commissioners, emphasizing the importance of explicitly including of our Web site, where you can prosthetic and custom orthotic print out talking points and a devices in the Essential Health copy of the sign-on letter. We Benefits. need you to ask your legislators to sign this letter so we can build We are currently working with as much support as possible from federal legislators on a sign-on Congress to encourage HHS and letter that members of Congress will be asked to sign and that will CMS to take action and ensure be sent to the heads of HHS and prosthetic and custom orthotic CMS, requesting that they use the devices are deemed Essential Health enforcement and oversight powers Benefits nationwide. You can find the Affordable Care Act bestowed these materials and more on the them, to require every state to Grassroots Advocacy Center page include prosthetic and custom at: amputee-coalition.org/advocacy- orthotic devices in the Essential awareness/grassroots-advocacy- TM Health Benefits as the law originally STOP THE HOP center. intended. Instant Mobility... whenever you need it! By getting them to use their The Amputee Coalition will attempt oversight and enforcement powers to share as many public town on this issue, we can work to hall meeting dates and locations improve the basic insurance plans as possible this summer (there any amputee (or someone who are going to be a lot, so we may may become an amputee) receives miss a few), through our Web site, from these insurance exchanges newsletters, emails and social media, or from other basic insurance but you can also contact your plans that operate in the state, to members of Congress and ask them ensure everyone has adequate and for a meeting or visit their Web sites affordable prosthetic coverage. and attend their town halls yourself. What can you do? The more Congressional members This summer and fall, we need your that we can get to sign onto this help. Members of Congress will be letter, the better chance we have at Jim W. Buffalo NY Veteran in their home district for several making HHS and CMS tell insurance recesses throughout the remainder of the year. Because this is an companies that Arms and Legs election year, they will be holding Are Not a Luxury, and that prosthetic and custom orthotic Hartford Walking Systems, Inc. even more town hall meetings, www.legsim.net and will often attempt to be more devices are essential. . 315-735-1659
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 9 IDENTIFY
a world traveler peer mentor home chef motivational speaker nature lover music & art enthusiast getting my life back I AM COLLEGE PARK. www.college-park.com/accent
Introducing the next generation Accent foot … Redesigned for added strength and a higher weight limit, and now available in larger sizes. 800.728.7950 I www.college-park.com
CPI-IAM-Accent-InMotion.indd 1 1/28/14 10:17 AM events calendar
A Publication of the Amputee Coalition JULY August Volume 24, Issue 4 Published six times a year by Amputee Coalition 9303 Center St., Ste. 100 Manassas, VA 20110 July 7-13 August 3 703/330-1699 National Therapeutic Recreation Week New York City Triathlon Fax: 703/330-1688 atra-online.com New York City, New York 900 E. Hill Ave., Ste. 290 challengedathletes.org Knoxville, TN 37915-2568 July 11 865/524-8772; 888/267-5669 Fax: 865/525-7917; TTY: 865/525-4512 First Volley Tennis Clinic Ironman Boulder E-mail: [email protected] Adventure Amputee Camp Boulder, Colorado Web site: amputee-coalition.org Bryson City, North Carolina challengedathletes.org opfund.org Interim President & CEO Sue Stout August 9 Chief Marketing & Communications Officer Mary Beth Gibson July 12 Leadville Trail 100 MTB Race Senior Editor Bill Dupes New England Classic 150 and 550 Leadville, Colorado Graphic Design Sexton Printing Woburn, Massachusetts challengedathletes.org Advertising 703/330-1699 diabetes.org August 10-16 Board of Directors July 18 National Health Center Week Limb Loss Education Day/First Fit healthcenterweek.org Executive Board: Chairman Dennis Strickland Fort Yates, North Dakota Immediate Past Chair Marshall J. Cohen amputee-coalition.org August 16 Chair-Elect Dan Berschinski Limb Loss Education Day/First Dance Vice-Chair Jeffrey S. Lutz, CPO July 19-23 Boston, Massachusetts Secretary Mahesh Mansukhani Treasurer Leslie Pitt Schneider Amputee Coalition amputee-coalition.org Paddy Rossbach Youth Camp Directors: [email protected] Finger Lakes Tour de Cure Ron Drach Michael Estrada Watkins Glen, New York Col. Greg Gadson July 20-24 diabetes.org Miles O’Brien Banff Hiking Challenge Jack Richmond Banff National Park, Canada Tour de Cure Colorado David S. Sanders challengedathletes.org Longmont,Colorado Terrence P. Sheehan, MD diabetes.org Charles Steele July 21-23 Scientific and Medical Advisory Committee Badwater 135 August 16-17 Lone Pine, California Back to Back Century Challenge Danielle Melton, MD, Chair challengedathletes.org Golden Gate – Sonoma County, California Roberta Cone, PsyD David Crandell, MD challengedathletes.org Scott Cummings, PT, CPO, FAAOP Joseph Czerniecki, MD August 17 David Dunville Ironman North American Championship Troy Farnsworth, CP, FAAOP Robert Gailey, PhD, PT Mont-Tremblant Col. Donald Gajewski, MD Mont-Tremblant, Quebec, Canada Jacqueline Herbert, MD, FRCPC challengedathletes.org Samuel Johnson, PharmD, MPH Grant McGimpsey, PhD August 21-23 Nancy Payne, MSN, RN Bruce Pomeranz, MD Kennedy Center Leadership Exchange in Terrence P. Sheehan, MD, Medical Director Arts and Disability Conference Stella Sieber Washington, D.C. Troy Turner, MBA kennedy-center.org Stephen T. Wegener, PhD, ABPP, Past Chair
Note: Dates listed for events are subject to change. Check Amputee Coalition online calendar and listed Web sites for current information.
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 11 limb loss awareness
The Success... Continues to Grow! over 1,000 photos
Angel Korrin CAMERON MONA ASHLEY
By Peggy Chenoweth With over 1,000 photo submissions below-elbow amputee (November during the month of April, our second 2012). “I work full-time, I’m about to annual Show Your Mettle event was a start driving again and I am busier now rousing success. The event was originally than I’ve ever been. I have an amazing created out of a desire to demonstrate support network and I’m hoping I can the active, diverse and vibrant Throughout the inspire others to be all they can be and month of February, lifestyles of those within the limb loss more!” we invited members community. Declaring limb loss through of our Facebook pictorial submissions, members of Kristin submitted a photo of her son, Wthe community proved that life after community to submit who doesn’t let living life as a bilateral videos for our first-ever amputation can be wonderful. We chose above-knee amputee keep him down, “Amputees Have Talent” five photos with the most “likes” to with this caption: “My Cameron, 12 competition. Visit our highlight. years old, finishing the Santa Clarita 5K. dynamic Facebook page “Hello, everyone! My name is Angel. I Living life as usual.” to view the submissions am a two-time cancer survivor. I lost my and the winners Mona has continued her active lifestyle left arm January 7, 2000. Although there at facebook.com/ after her below-knee amputation. Her are times I could really use an extra AmputeeUSA. photo shows her getting ready to trek hand (ha ha), having only one arm doesn’t keep me from taking care of my the Inca Trail in Machu Picchu. three beautiful children. I am currently Ashley submitted a photo featuring her 14 years in remission and growing out new myoelectric arm: “My first myo my hair so I can donate to Locks of ever! 20+ years ago, I had cosmetic Love.” Facebook.com/AmputeeUSA prosthetic arms. Missing the whole Korrin is a bilateral below-knee amputee shoulder and all – I never thought I (October 2012) as well as a bilateral could handle this type of arm.”
12 inMotion Volume 24, Issue 4 July | August 2014 WHOWHO ISIS YOURYOUR AMPUTEE HERO? AMPUTEEAMPUTEE HERO?HERO? Who is your amputee hero, and why? Whether they’re an amputee or not, the special person who inspires you to live well with limb Wlleede a n someone to look up to. loss can be a relative, a friend or someone you’ve It could be a public figure, never met. We invite you to send us an article such as an author, a musician, (350 words or less) for consideration to be included in inMotion an inventor or an astronaut. ([email protected]).
There are also plenty of heroes closer to home. Ordinary men and women who are concerned with putting food on the table, clothing their families and paying the rent, like the rest of us.
But people who live well with limb loss face – and solve – extraordinary problems every day. They are continually forced by necessity to find practical, creative solutions to allow them to live up to their full potential, at home, in their communities or in the workplace.
Sometimes, whether it is their intention We owe our gratitude and admiration to these or not, their actions can create a domino everyday heroes who have made a difference, effect, changing the lives of countless such as longtime supporters whose leadership others. has strengthened the Amputee Coalition’s peer support network and advocacy efforts. And to those who work quietly in the background to help others, such as establishing assistive device exchanges for people who would otherwise be unable to afford them.
Looking at their lives, their perseverance and determination, perhaps we too can learn to become examples to those who look to us.
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 13 special message
The National Limb Loss Resource Center
Caregivers Recent Amputees Healthcare Providers Parents & Youth Seniors
Where can you turn when you have questions about limb loss? “I’m a new amputee, The Amputee Coalition’s National Limb Loss Resource Center and don’t know is the nation’s leading source of information about limb loss where to start. and limb difference. The Center’s staff is the point of contact Can you help me?” between you and the Coalition. Think of us as your friends at the Coalition who have, or can find, information on virtually “I can’t afford anything related to limb loss, from how to donate one unused a prosthesis. shoe, how to prevent additional amputations, or how to battle ? with your insurance company. Where can I go for help?” We take orders for inMotion and First Step; help locate support groups and healthcare providers; assist people and caregivers with their adjustment to limb loss; help people over the big “I don’t like using hurdles for more complicated questions; and maintain an my prosthesis. ? online library full of information, including materials translated Are there any for Spanish speakers and people with lower reading abilities, other options?” and fact sheets. The Center creates fact sheets for the most commonly asked questions, so that information and resources are quickly ? “My father has diabetes. available. For example, the “Prosthetic Limb Donations” Do you have any fact sheet highlights organizations that accept donations of information prosthetic limbs. Other popular fact sheets include information on foot care for him?” on financial assistance, summer camps, prosthetic FAQs and support groups.
The Center provides comprehensive information and resources free of charge to people with limb loss and their families, ? friends, caregivers, healthcare professionals and educators. “My daughter is a bilateral above-elbow amputee. In fact, the Center serves as the key information source on Are there regulations limb loss for national partners such as the Centers for Disease about whether she can Control and Prevention (CDC), the U.S. Department of Defense and the Veterans Affairs Amputation System of Care. All patient ride the school bus?” information is reviewed by the Coalition’s medical/scientific ? advisory committee of experts in the field of limb loss. 14 inMotion Volume 24, Issue 4 July | August 2014 Our staff is available five days a week to provide free, personalized answers for new and experienced amputees alike. We answer hundreds of questions per month on prosthetics, funding, support resources and other topics related to limb loss.
• Browse our Web site at amputee-coalition.org/ limb-loss-resource-center.
• Call us toll-free at 888/267-5669, 8am-5pm EST, Monday-Friday.
• Submit your question through the “Ask an Information Specialist” form on our Web site (amputee-coalition.org/forms/nllicask). The? National Limb Loss Resource Center
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Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 15 the doctor is in
by David McIntyre, MD
Global warming aside, with summer coming on, it is time to talk about heat and heat-related illnesses. There are numerous heat-related illnesses, ranging from a minor heat rash (little red bumps) to heat cramps to heat syncope (fainting) to the more severe conditions of heat exhaustion Gand heat stroke. Heat stroke is a life-threatening condition, defined as a Preventing Heat Exhaustion and core temperature above 104° F. Left untreated, it can cause Other Heat-Related Illnesses damage to your brain, heart, kidneys and muscles. The longer treatment is delayed, the worse these injuries can • Wear loose-fitting, lightweight, light-colored become, increasing your risk of serious complications or clothing. death. • Avoid sunburn and apply sunscreen to any exposed skin; having a sunburn reduces your Heat exhaustion is the stage just prior to heat stroke and it body’s ability to rid itself of heat. is very common in conditions where temperatures reach close to 100° F and the humidity is high. Recognizing and • Drink plenty of fluids, avoiding alcoholic treating the symptoms at this stage can prevent the more beverages. serious consequences of full-blown heat stroke. • Let your car cool off before you drive it. Heat exhaustion is caused by exposure to high • Never leave children or pets in a parked car in temperatures, particularly when combined with high hot weather for any period of time; on a hot day, humidity, and strenuous physical activity. (The old adage the temperature in your car can rise 20° F in that it’s not the heat, it’s the humidity, is wrong – it’s just 10 minutes. both.) Signs and symptoms of heat exhaustion may develop suddenly or over time, especially with prolonged • It’s best not to exercise in extremely hot weather, periods of exercise. The symptoms include cool, moist but if you must, follow the same precautions skin with goose bumps when in the heat, heavy sweating, and rest frequently in a cool spot; taking breaks fainting, dizziness, fatigue, weak, rapid pulse, low blood and replenishing your fluids will help your body pressure when you stand up, muscle cramps, nausea and regulate your temperature. headaches.
Heat exhaustion is a failure of your body to maintain an acceptable core temperature. Your core temperature is the body’s heat combined with environmental heat. Your body needs to regulate the heat gain (and in cold weather, heat loss) from the environment to maintain a core temperature that’s normal, approximately 98.6° F (37° C). In hot weather, your body cools itself mainly by sweating.
16 inMotion Volume 24, Issue 4 July | August 2014 The evaporation of your sweat that may be used to bring down regulates your body temperature. your core body temperature. However, when you exercise strenuously (or for amputees, Other factors that may contribute just walking can be exceedingly to heat exhaustion include: demanding) or otherwise overexert dehydration, which reduces your in hot, humid weather, your body body’s ability to sweat and maintain is less able to cool itself efficiently. a normal temperature; alcohol use, As a result, your body may develop which can affect your body’s ability heat cramps, the mildest form of to regulate your temperature; and heat-related illness. Symptoms overdressing, particularly in clothes of heat cramps usually include that don’t allow sweat to evaporate heavy sweating, fatigue, thirst and easily. muscle cramps. Prompt treatment Anyone can develop heat usually prevents heat cramps from exhaustion, but there are certain progressing to heat exhaustion. risk factors that may increase Treatment for heat exhaustion your sensitivity to heat. Children starts with rest in a cool place. under 4 and adults older than Getting into an air-conditioned 65 are more susceptible to heat building is best, but at least find a exhaustion. The body’s ability to shady spot. Rest on your back with regulate its temperature isn’t fully your legs elevated higher than your developed in the young and may heart. Drink lots of cool fluids. be reduced by illness, medications Stick to water or sports drinks. or other factors in seniors. Certain Avoid alcoholic beverages, which drugs, such as blood pressure can contribute to dehydration. If meds, diuretics, antihistamines possible, take a cool shower or soak and psychiatric meds, may affect in a cool bath. Applying cool water your body’s ability to stay hydrated to your skin and using a fan will and respond appropriately to heat. rapidly cool your core temperature. Some illegal drugs, such as cocaine, Remove any unnecessary clothing amphetamines and Ecstasy, can and make sure your clothes are increase your core temperature. lightweight and non-binding. This Carrying excess weight can affect may be a good time to remove your your body’s ability to regulate its prosthetics to help cool down. temperature and cause your body to retain more heat. If you don’t begin to feel better within one hour of using these The heat index is a single treatment measures, seek immediate temperature value that considers medical attention. ER treatment how both the outdoor temperature for heat exhaustion works toward and humidity make you feel. When the same goals – hydration and the humidity is high, your sweat lowering the core temperature. can’t evaporate as easily, and your Intravenous (IV) fluids are given body has more difficulty cooling to help you rehydrate. Immersing itself, making you prone to heat you in cold water, misting your exhaustion and heatstroke. When skin, placing you in front of a fan, the heat index is above 90° F, you or using ice packs and cooling should take special precautions to blankets are some of the techniques keep cool.
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 17 travel & accessibility
Passing Airport Security
Single-Handedly by Eric Westover
I was in line waiting to pass >> With a Hand and a Nub through airport security when • Have a sense of humor and smile. I heard the woman behind • I never check bags, unless I fly me say, “You need three internationally. hands to get through security nowadays.” • Grab two bins: one for my laptop, one for shoes, shades, belt, liquids She didn’t see I only have in bag, etc. “I’ve found one hand. I smiled at the • My wallet goes in my laptop bag before Icomment because I don’t I hit security (I keep my cash and ID in that wearing find it that hard. It might my pocket). take me an extra minute, the right shoes • Everything goes in front of my suitcase; but unzipping bags, removing makes a big I use my suitcase to push everything jackets and taking out a forward. difference.” laptop is easily done with • Once I get through the screener, one hand. I have a three- then I have time to reload all my stuff inch below-elbow nub that (my suitcase takes the longest to screen, is useful. so it goes in last). I fly often enough (speaking, • Sometimes I pack my prosthesis; amputee soccer, consulting, when I do, I know the look on the etc.) to have created a system X-ray machine operator’s face when to share with other amputees: they see the metal and straps.
18 inMotion Volume 24, Issue 4 July | August 2014 >> Wearing my Prosthesis • I follow the same steps above except I always take off my prosthesis and send it through so I don’t waste time with a wand, pat-down or sniffer. • It’s easier to send it through and just put it back on once I’m through security. • It is funny to see the belt screech to a halt – and knowing why! I just show my nub and tell them it’s mine with a smile. • I’ve been told my prosthesis looks like a lamp under the X-ray, which makes me think of the “leg lamp” in the movie A Christmas Story. I always get a chuckle out of that.
>> Shoes In my travels, I’ve found that wearing the right shoes makes a big difference. I used to wear laced shoes and for a while I would make the TSA employees re-tie my shoes after I was through screening. You should’ve seen the look on their faces when they said I was through and I told them they weren’t and pointed to my shoes. It was priceless!
Then I discovered a line of cool
shoes with a lacing device Inc. Boa Technology, by provided Photo called the Boa closure system, which consists of a wheel on the back or the side of the shoe that you pull out to loosen the laces and push in and turn to tighten. They’re the only thing I wear when I travel.
Next time you hear someone say security is getting more difficult or you need three hands, you might say, “I know a guy with one arm and he manages just fine.”
lease tiie ou p my d y sh ul o o es C ? Keep up on up-to-date information at... amputee-coalition.org
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 19 federal affairs
Paul Wrighton uses hand controls to take his wife, Wanda, shopping. Back on the Streets of New York by Leif Nelson, DPT, ATP, CSCS
Following the lead of his father, stepfather, grandfather Pascale Pierre, PT, DPT, is the driver rehabilitation and great-grandfather, Paul Wrighton is a fourth- specialist at the Bronx VA. Mr. Wrighton recalls generation United States Army veteran. He is extremely their first encounter clearly. “She had me driving proud of his service to his country during the Vietnam on day one; I couldn’t believe it!” Wrighton’s War. Trained as a supply specialist, Wrighton worked spouse, Wanda, adds, “She also wouldn’t let various assignments, including transporting munitions. me push his wheelchair; she wanted him to do everything himself!” The program varies based on Since retiring from service in 1967, Wrighton continues each veteran’s personal disability, but veterans with to serve with his fellow veterans as a life member of the limb loss typically participate in a four- to eight- Disabled American Veterans (DAV) service organization. session program. “It’s a progression, where we start Wrighton is living with limb loss in both of his lower in a parking lot and then move to a residential extremities, having lost the left leg below the knee in neighborhood before driving on the highway,” F Pierre explains. A push/pull hand control is a 2009, and the right lower limb just last year. “After common tool used to return veterans with bilateral I lost my second leg, the doctor asked me what my lower-limb loss, like Mr. Wrighton, back to the goal was,” he recalls. “I told him I thought it wasn’t road. Veterans with other disabilities may require possible, but I’d really like to be able to drive.” That’s other adaptive equipment, while some may only when Wrighton was referred to the James J. Peters VA need to learn new techniques to overcome their Medical Center in the Bronx, New York, to be enrolled disability without installing permanent vehicle in the Drivers Rehabilitation program. modifications.
20 inMotion Volume 24, Issue 4 July | August 2014 After training, veterans may be eligible for the “Now I don’t have to drive everywhere, and the controls Automobile Adaptive Equipment (AAE) program, for me are the same as before.” She uses the foot pedals and a Veterans Benefits Administration (VBA) program Wrighton uses the hand controls in the same vehicle. administered by the VA Prosthetics and Sensory Aids Service (PSAS). Salvatore Gambino, U.S. Wrighton had an option to buy a new vehicle, Marine Corps veteran and chief of patient but he decided the Silverado was a good fit for him and his needs. He states “I like the services for VA VISN 3 PSAS, explains For the first time that “Veterans with certain service- way it rides; it’s smooth on the raggedy since learning to connected disabilities can receive this roads of New York.” Since March 2014, he has been using hand controls to benefit to provide access to enter, drive again, the run errands, take his wife shopping and exit and/or operate a motor vehicle Wrightons will be attend DAV events. And, for the first or other conveyance.” Gambino heading to Virginia time since learning to drive again, the states qualifying service-connected to visit family. Wrightons will be heading to Virginia to disabilities include “loss or loss of use visit family. They plan to make the trip of one or both feet or hands, ankylosis together in the Silverado – part of the way by of one or both knees or hips, or permanent hand and part by foot. impairment of vision of both eyes that have a central acuity of 20/200.” He clarifies that “a veteran The VA Driver Rehabilitation Program is coordinated through with a severe visual impairment might only use the Physical Medicine and Rehabilitation Service at 48 sites across benefit to allow them to be a passenger in a vehicle, but the country. More specifics can be acquired through the PM&R that is determined by medical team evaluation, which department at your local VA medical center. Information on AAE will likely include the driver rehabilitation specialist.” and other programs can be found at www.prosthetics.va.gov or An AAE benefit strictly for ingress and egress to a motor benefits.va.gov. vehicle is permitted under this program for certain eligible non-service-connected veterans. To find out if you are eligible, Gambino recommends that each veteran contact the prosthetic representative at their local VA medical center. BetterBetter Wrighton uses his AAE to travel from his home in Queens to the VA’s Brooklyn campus three times a week. Before receiving his hand controls, he needed to take medical transport, which would often leave him waiting for hours to be picked up. He now drives his 1994 Chevy Silverado to his appointments, and his wife drives home. “This is much better because when I’m ready to go, I’m ready to go,” Wrighton says. Wanda Wrighton adds,
PERFORMANCE n QUALITY n RELIABILITY Toll Free: 800.279.1865 Both the brake and accelerator pedals are operated with the on The Web: www.trsprosthetics.com n www.oandp.com/trs push/pull hand control.
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 21 growing up as an amputee
“I hope to become a great snowboarder and maybe train for the Paralympics. I can’t wait to drive and get a job.” open doorsby Kevin Messner
Growing up is a challenge for most kids. fix my legs right away and even made me a Being an amputee makes it harder, but it pirate peg leg once for a Halloween costume also offers opportunities that many kids and tweaked my bike so I could ride it. At who aren’t amputees don’t get to have. Arizona Disabled Sports, I learned archery, You get looks and people say some mean how to swim and, best of all, to run. The things, which hurts and can make growing Challenged Athletes Foundation bought me gup challenging, but doors open that make my first running leg and I started to compete growing up wonderful. nationally with other disabled athletes. I travelled with the AZ Heat team to the Elementary school was hard for me. Kids National Junior Disability Championships would stare at my leg because they weren’t and made many friends who also had sure what it was. They were curious. Some amputations and other disabilities. At the said, “Look at that kid with the robot leg.” It Endeavor Games, I saw the most amputees made me shy and I tried to cover it up. My I had ever seen in one place and many were shyness pushed others away and it made me Paralympians! I realized that maybe I could feel uncomfortable. Even though I had good be one too, someday. grades and nice teachers, I struggled a lot to accept myself and my amputation. During the summer between sixth and seventh grade, I went to the Paddy Rossbach Life outside of school was much better. My Youth Camp. It was great to be with all other prosthetists are awesome guys. They always amputees and I partied and had a blast. From
22 inMotion Volume 24, Issue 4 July | August 2014 Photo credits: Photos provided by Kyle Messner. Snowboard photo printed with permission of National Ability Center. there, I moved out of my shy stage and became more confident.
When I started middle school, I was nervous because I thought many of the new kids would say things, stare or not talk to me. However, kids were more accepting of me. Many of my old friends from elementary school stood by me when I needed them. I met more kids and a lot of them came up to me and asked me about my leg and I explained. Several even thought it was cool! I realized if you’re comfortable with yourself, others will be too. Not everybody accepts me, but I’m fine with that. I think that is normal for everybody in middle school.
Middle school has been great; I’ve been able to do lots of new things. I have played flag football, run track and played basketball. I even made the All Star team for flag football this year! There have been dances and cool field trips. My life outside of school continues to be awesome. I was the junior spokesperson at the Limb Loss Education Day in Phoenix last year and gave a speech. Thanks to Shriners and the National Ability Center, I got to go skiing and snowboarding twice this year. I got invited to the Desert Challenge Paralympic track training camp and am getting ready to go on two whitewater trips this summer. I’m excited to be going to the Paddy Rossbach Youth Camp for the third year.
In September, I will start high school and I am more confident now than when I started middle school. I’m not sure what high school will be like. New kids will stare at me. Kids are going to ask me questions and some will talk to me and some won’t. Some might pick on me because I’m a freshman, but that’s normal. I want to go to college, so I know I’m going to have to study hard. The classes will definitely be more difficult. On the other hand, I think I will have more freedom and will get to experience new things. I want to run cross-country and be on the track team. I hope to become a great snowboarder and maybe train for the Paralympics. I can’t wait to learn to drive and get a job. Maybe I can even be a camp counselor at Paddy Rossbach! Who knows?
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 23 Path to Yosemite Falls A Walk in the Park by Amy Di Leo
It’s summer – time to pack up and head Mommy blog (amputeemommy.com), out to experience some outdoor fun, and lives the trials and tribulations of right? Well, it might not be that easy. “disability travel.” An accident more a We all stress over the possible delayed decade ago led to the amputation of her flight, the occasional lost bag, and left foot. With two young boys, she says, traffic; but when you, your travel partner “Traveling is an exercise in frustration or your child are limb-challenged, the for everybody; add a disability to the travel challenges multiply. mix and it can be daunting.” “Accessibility is what makes But there are ways to keep your cool Her family-centered vacations have travel possible for when the unexpected happens. Travel been both positive and negative, but individuals with tips from expert disability travelers she’s glad she can at least experience disabilities.” relating to accessible transportation, them. “Travel accessibility is finally functional accommodations, and the gaining momentum,” she explains. Idisability policies at your recreation “For years, individuals with disabilities destination will help make your were forced to modify on-the-go as summer vacation a good time for all. they simply tried to adapt to what was provided. Now that adaptations Why travel? are being provided and all modes of Peggy Chenoweth of Gainesville, transportation are becoming more Virginia, is the creator of the Amputee accessible, people with disabilities
24 inMotion Volume 24, Issue 4 July | August 2014 Photography by Robin Jerstad Robin by Photography
Entrance to Morgan’s Wonderland A Walk in the Park Tips and Advice to Avert VacationN ightmares
are starting to push the limits Karen Wang, a Michigan writer the families of individuals with on their own travel experiences. who is a mom to two special special needs. She has had a good Individuals no longer have to limit needs children, adds: “Travel has amount of experience with accessible their adventures because of their educational and therapeutic benefits vacations with her kids, both in disabilities.” for any person because it can reduce parklands and at amusement parks. stress and provide new perspectives She has become an expert and “Travel is important in general while strengthening relationships advocate for disabled travelers. because it broadens your horizons with loved ones. Accessibility is what Because policies vary widely from and lets you experience different makes travel possible for individuals park to park, Karen says gathering cultures,” adds Candy B. Harrington, with disabilities. To me, accessibility the information is not a simple task. an accessible travel expert, author means the removal of physical, and editor of Emerging Horizons sensory and social barriers for the “There is no central location to (emerginghorizons.com), a magazine full inclusion and participation of find accessibility information about about accessible travel. “Accessible the whole community.” all the park and entertainment travel is also hugely important options,” she explains. “To connect because it promotes both inclusion Tensionless trip tips the dots for every park out there and independence. When you take would take years. I visit the Web Karen writes about disabilities and that first trip you come back with site for each park and search for caregiving for The Friendship Circle the feeling of real accomplishment, anything related to disabilities. (friendshipcircle.org), a Michigan- which gives you much more self- There’s usually a guest services based nonprofit organization that confidence.” link somewhere on the Web site provides programs and support to
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 25 Photos courtesy of rogwilmers.com courtesy Photos
and a subheading for ‘guests with the Cedar Fair, Six Flags and Disney disabilities’ or ‘accessibility.’ If I can’t chains. I have been told that Holiday find what I’m looking for, I email the World also makes accommodations park.” on request and the staff will go out of its way to ensure the comfort of “When I get there, sometimes I guests with disabilities.” meet a guest services employee who will deny an access pass,” Several years ago, an attendant at she adds. “That’s when it helps to Six Flags America in Washington, have a signed doctor’s note stating D.C. refused to let Peggy board a the nature and permanence of the ride, which soured her taste for disability. Even so, sometimes I arrive that particular park, but she says to find out the access pass policy just she found Hershey Park in Hershey, changed last week.” Pennsylvania and Disney World in Orlando, Florida much more positive Access Pass Karen says she relies heavily on experiences. word-of-mouth and social media People with disabilities are to find the best destinations for eligible for the Access Pass, The United States Access Board is her family, but adds, “Even then, which affords free admission an independent federal agency that I have to plan out every hour of at all federal facilities that promotes equality for people with the visit and create a back-up plan.” charge entrance fees, and disabilities. Federal standards and She chides, “‘Vacation’ is not an also offers discounts for some guidelines for recreation facilities, accurate description of these visits.” amenities, such as camping. including amusement rides, are available at access-board.gov. Policies A cause for amusement The free pass can be obtained have changed at many theme and at the park, which charges an Having done extensive research amusement parks, but the experts entrance fee, with proof of and testing, Karen says smaller agree: that’s no reason to stop disability, or online at: store. theme parks seem to be more finding your fun. usgs.gov/pass/access.html. accommodating. “My family had a beautiful experience at Knoebels Candy says the policy changes are in Elysburg, Pennsylvania and very controversial: “[But] I think Marineland in Niagara Falls, Ontario, something had to be done, as the Canada,” she says. “Holiday World previous policy was blatantly abused. in Santa Claus, Indiana has a ‘virtual We had a New York tour company queue’ boarding pass policy for that offered VIP, essentially ‘cut guests with disabilities similar to to the front of the line,’ tours to
26 inMotion Volume 24, Issue 4 July | August 2014 non-disabled park visitors. They just which is the only 100 percent accessible loaded one person in[to] a wheelchair theme park in the world.” and [took] the whole party to the front of the line. I also have seen Candy agrees: “Morgan’s Wonderland was teens do the same thing. This new built to be inclusive. It’s gate-controlled policy eliminates that abuse.” (reservations are required), so crowds aren’t a problem. The rides all feature roll-on Disney said it changed its pass policy access and [there are] lots of play areas, “so it can continue to serve the guests water features, a fishing pier and who truly need it. The new program fun games – all of which are is designed … to help control abuse [completely] accessible. Plus, “Most parks are that was, unfortunately, widespread entrance is free if you’re quite specific about and growing at an alarming rate.” disabled; caregivers are $5. It’s ride requirements, and not a thrill park, but it’s a great double amputees are not Candy explains, “One thing you have choice for kids under 12.” permitted on certain rides to realize is that the ‘fast tracking because they cannot be to the front of the line’ for disabled Vacationland, USA buckled in safely.” patrons was not implemented to cut For a non-thrill ride experience, the waiting time; but to usher them a visit to the hundreds of local, to the accessible entrance, which was state and national parks make a great usually the exit. As new rides are built vacation and that specialized information more inclusive there really isn’t the may be easier to ascertain, thanks to a need to use the exit; they can use the Michigan family. same entrance as everyone. I think it reflects inclusion, as everyone stands Ron Wilmers is a travel enthusiast. He, his in the same line, and has the same wife, Kay, an RN, and their son, Roger, a wait,” she adds. professional photographer, turned their passion into purpose when they developed Some of Karen’s tips for making a trip The Disabled Traveler’s Companion to the amusement park less stressful (tdtcompanion.com) to help other outdoor include: printing a map of the park lovers and would-be travelers with special to figure out the best place to park, needs navigate their trips. Ron says it’s researching ride descriptions to decide which ones can accommodate your needs, and printing pictures of the rides to try. If you don’t have access to the Internet to do the research, Karen suggests calling the park’s guest services line at least six weeks in advance to have maps and descriptions mailed.
“Most parks are quite specific about ride requirements, and double amputees are not permitted on certain rides because they cannot be buckled in safely,” Karen advises. “The only park that allows double amputees on all rides is Morgan’s Wonderland in San Antonio, Texas, Photography by Robin Jerstad - above two right photos
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 27 “geared toward providing specific information disability and valid identification, the for people with disabilities so they may go Access Pass is available at the entrance where everyone else has gone before.” to any of the federal parks or online at: store.usgs.gov/pass/access.html. And many have “gone before.” According to the National Park Service (NPS), “There are lots of accessible trails, 273 million people visited our lodging options and plenty of places “If functional national parks last year, and to handcycle in the Grand Canyon,” accessibility features are part of Candy explains. “Although the iconic accessible lodging 397 national park sites. The NPS mule ride is not accessible, there is a is not available, says it has made a commitment little-known driving route down to the to make national parks bottom of the canyon, located on tribal why go there?” accessible to everyone, and land, plus the Grand Canyon Skywalk information for disabled travelers and Railway.” should be readily accessible on the “All the shuttles and most of the ground parks’ individual Web sites (nps.gov). transportation at Yosemite National A little known fact is that people with Park are accessible, as are many of its disabilities have free access to national parks. trails and campgrounds,” Candy adds. The Access Pass is available through the U.S. “Yellowstone is also very accessible with Geological Survey’s (USGS) Web site to U.S. boardwalks through the thermal fields, citizens and permanent residents of the United accessible campgrounds and many States who have been medically determined to other features.” have a permanent disability. A park entrance And, she adds, don’t count out beaches: pass for the general public is $80 per year or “I love San Diego, because there are $10 for seniors, but the Access Pass is a free accessible power beach wheelchairs [to lifetime permit, providing access to more than borrow]. The [beaches] also have surf 2,000 federal recreation sites. chairs so you can go into the water The USGS adds that the Access Pass also too.” provides the pass owner with discounts on And if getting high is your thing, Candy expanded amenities, which may include says there’s an accessible hot air balloon camping, swimming, boat launching and in Windsor, California – the only guided tours. Available with documentation of one in America that accommodates wheelchairs. It has a fold-down boarding basket and a plexiglass side so the viewing field is wide open to wheelchairs.
There are also a variety of more active or extreme sports options for natural thrill seekers.
“The National Sports Center for the Disabled in Winter Park, Colorado probably has the most experience with adapted recreation for all ages and abilities,” Karen advises. Ron adds that great options are available for people with special needs, including:
28 inMotion Volume 24, Issue 4 July | August 2014 skiing, river rafting, horseback riding and mountaineering.
But, as Karen notes, “[not] all excursions are accessible, so arrangements must be made far in advance.”
That seems to be the theme for success during these travel challenges – preplan, preplan, preplan! And have a backup plan.
Accommodating accommodations Ron Wilmers’ Web site connects people with accessible lodging – from campsites to plush hotels.
He says, “If functional accessible lodging is not available, why go there? The word is ‘functional,’ not just accessible. A person may be able to get into an accessible room accessible restaurants before our but if the room is not functional, then visit. We also explain to hotel and accessible has no meaning.” park staff our exact expectations – Providing room information is a major we don’t expect them to read our part of what Ron’s Web site offers – that minds!” includes photos, room measurements, a checklist and more. This takes some of the Getting there fear and frustration out of planning the You’ve got your room and your trip. The Wilmers used to make a mock-up vacation planned, but getting there campsite in the yard to see potential can present a challenge as well. challenges before packing. As Candy shares, “Accessible If camping is your thing, Candy has transportation has certainly “For success a suggestion: “I just stayed in a very improved over the past during these travel accessible yurt (hut) in Ridgeway State 20 years. [Years ago the challenges – preplan, Park in Ouray County, Colorado. It sleeps only accessible airport preplan, preplan! six but there’s also an accessible tent transportation available And have a platform if you’d like to pitch your own for my friend] was an backup plan. tent.” She adds that there are a number of ambulance! Super Shuttle now accessible trails and an accessible fishing offers accessible airport transfers pier in the park as well. and many local transportation companies are following suit. I’m Also good to know if you prefer a hotel hopeful we will see more inclusive to sleeping outdoors: pools and Jacuzzis taxi fleets across America in the at hotels rooms are now required to have future; New York City seems to be lifts and U.S. hotels are required to reserve on a good track for that.” accessible rooms, according to Candy. It may be a little extra work, but Karen shares her tips: “We select lodging with preplanning, backup plans and based on proximity to our destination so a positive outlook, summer vacation we can take frequent breaks. We identify can be fun in the sun.
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 29 S urviving a Flight: Air Travel Tips 10 by Harleen Chhabra Gupt
Whew… I just returned from a that (and neither can I promise that it will marathon flight from India and after 24 ever happen in this lifetime), let me just hours in the “cattle class” section, there is skip it. a new entry in my bucket list: to be able to afford travel in the business class. In the Four | When you arrive at the airport, meantime, here are some tips for those get a porter. I use any help I can get to who have the courage to brave air travel. avoid straining my good arm. As an upper W arm amputee, I feel blessed that I do One | Let me begin with this disclaimer: not have to request mobility assistance. I am comfortable with asking for help. As an However, if your circumstances are upper-limb amputee since the age of 2, I different or even if you are unsure, by have learned the balance between self- all means request disability (wheelchair) respect and the need for assistance. Before assistance at the time of booking and you decide to undertake a journey, think checking in. Later, if you don’t feel the about your circumstances and preferences. need, don’t use it. It’s easier to let them know you don’t need it than to wait Two | Start your preparation by for someone to show up, which can having a session with your occupational sometimes be quite a few minutes. By the therapist. Put together a custom travel way, if you have multi-hop flights, keep plan based on the nature of your enough time between your flights and amputation and prosthesis. Think of preferably take the connecting flights of different scenarios and how you would the same airlines. overcome typical challenges. Five | Whether to wear the prosthesis Three | Pick bags with 360 spinners. or not during travel could be a big question These are easy on the shoulder to drag for many. I prefer not to wear mine and or push along. If possible, check in all of typically check it in. For one, letting people your baggage but keep essentials handy. see me without a prosthesis makes it easier If you take medicines, keep your to ask for assistance. The security check prescription with you in your hand bag. also goes more smoothly, with less drama. I should add “pack light.” But since I This is especially true for international myself have not been able to ever do travel.
30 inMotion Volume 24, Issue 4 July | August 2014 Six | Request pre-boarding Eight | Ask flight attendants assistance at the gate, meaning to serve beverages to you in small you get to board first. This way, bottles versus open glasses. Closed you can take the additional time lid bottles are easier to handle to get settled in. I usually ask a and reduce spilling possibilities. fellow passenger to help Consider carrying such me with stowing any empty bottles when flying. cabin baggage. In On longer flights, 20 years of travel I carry my own experience, “Here are some sandwiches or I have tips for those rolls, which are only twice who have the easy to hold and encountered courage to brave eat. crew members air travel.” (non-U.S. Nine | During female) who have longer flights, refused to do so. consider simple I then simply had to stretching exercises to keep point and show to explain why your blood flow going. I couldn’t do so myself. Ten | When the landing Seven | Before boarding, announcement is made, remind you can also ask an attendant the flight attendant if you have to give you a seat next to an requested special assistance, empty one if available. I find it especially for international multi- easier to get organized with some hop flights. For getting the cabin extra room, especially when I baggage down, there are usually travel with my child. many able bodied folks around happy to help.
>>> Have travel stories or tips to share? Visit my blog at harleengupt.com/blog.
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 31 – Navigating Your – Home Modification Choices by Élan Young
People with limb loss don’t all have the same Adaptability – These are quick changes that can be made mobility challenges, so for those considering to accommodate the needs of those with disabilities or home modifications, some adaptations may mobility limitations. Houses can be made adaptable without work better than others. However, the best way having to completely redesign the home or use different to begin planning for home modifications is materials for essential fixtures. Examples include grab bars to first understand what the home structure in bathroom walls and movable cabinets under the sink for already has, what can be adapted, and whether those in wheelchairs. more extensive renovations would be better Universal design – These features are built into a (or possible) than building new with built-in home’s original blueprints. The features include appliances, modifications. A checklist, such as the one fixtures and floor plans that can be adapted for almost any provided by The National Resource Center P special need. on Supportive Housing and Home Modifications (homemods.org), can walk you through To Remodel or build? your modification needs for each room Some questions to consider before you decide to remodel or (homemods.org/ pages/safety-assess.shtml). build will, for most people, be a matter of budget. However, First of all, it’s useful to understand some other considerations might include whether you actually terminology. According to the Rehabilitation enjoy where you live or whether children would have to be Engineering and Assistive Technology Society moved to a new school and other similar considerations. of North America (RESNA), home modifications Architects with experience in redesigning homes for should improve the following features of a home: accessibility can be a useful resource when making this decision. Here are some important considerations when Accessibility – This includes widening deciding whether to renovate or build new. doorways, clearing spaces for wheelchair access, lowering countertops in kitchens and bathrooms and much more. This remodeling must comply with the Fair Housing Amendments Act of 1988, the Americans with Disabilities Act accessibility guidelines, and American National Standards Institute regulations for accessibility. The work must also conform to state and local building codes.
Related Resources ADA National Network Department of Veterans Affairs National Reverse Mortgage Rehabilitation adata.org benefits.va.gov/homeloans/ Lenders Association Engineering and Assistive adaptedhousing.asp reversemortgage.org Technology Society of Area Agencies on Aging North America n4a.org National Resource Center Rebuilding Together resna.org on Supportive Housing and rebuildingtogether.org Home Modification homemods.org
32 inMotion Volume 24, Issue 4 July | August 2014 Renovating an existing home Building a new house Pros Pros • Familiar surroundings and familiarity • Including modifications in the design with property make it easier to spot stage often adds relatively little cost features that are not accessible. compared to retrofitting a house with • You can avoid the stress of moving. traditional design features. • Modifications can be spread over a • It’s easier to make the interior of longer period of time if you can’t afford the home completely wheelchair- Funding Options to get them all done at once. accessible. • You can apply for government • All accessibility features and Let’s face it – outside funding is assistance. equipment can be built in. critical for most people to be able • The entire house can be designed to to afford home modifications. Cons meet your exact needs, in a location Some people pay for home • If this is your current home, it might be of your choosing. modifications with a second difficult to live through the noise, dust • A new home will more than likely be mortgage, a home equity loan or and extra people in your home; does more energy-efficient and have lower a reverse mortgage. For those who short-term inconvenience outweigh maintenance costs. pay for the home modifications long-term gains? out of personal savings, they may • Some homes have pre-existing Cons be eligible for tax relief through conditions that are unknown until • Your input will be crucial to get the IRS deductions for medical renovations begin; in these cases, costs results you desire, which takes time expenses. However, federal and can skyrocket unexpectedly. and energy. private grant assistance does • Compromises may have to be made if • Building will probably take longer to exist, although not all programs the original architecture doesn’t allow complete than renovation. are available in all areas, or to all for all modifications. • Property taxes will likely be higher. applicants.
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 33 exercise & fitness Exercise Fitness by Cindy Asch-Martin & Abdominal and gluteal exercises can to it. The transverse abdominis is located be two of the most challenging for under the obliques; it is the deepest of amputees. There are so many ways to the abdominal muscles and wraps around work these muscles; whatever level of the spine for protection and stability. amputee you are, there is one that will work for you. If you’re looking for that hourglass appearance, then you want to focus on Your abdominal muscles are made up of your rectus abdominal muscles as well Aseveral different muscle groups: the rectus as your external obliques (Figure 1). Abdominal abdominis muscle (often referred to as the “six-pack”), the external oblique, There are several options for abdominal muscles have the internal oblique, and the transverse exercises: crunches, leg lifts, planks (Figure 2) and rotations. their own roles abdominis. They all have their own roles to perform with each movement we Crunches can be done lying on your to perform make to help strengthen our core. back on a flat surface, or using a resist-a- with each The rectus abdominis, located along the ball or Bosu ball. There are even weight movement we front of your abdomen, covers the upper machines that you can use. All of these and lower portion of your abdominal will give you results if you learn how make to help muscles, while the external oblique is on to execute the movement correctly and the sides and front of your abdomen. do them two to three times a week (not strengthen our daily). core. The internal oblique is located under the external oblique, running perpendicular Leg lifts/raises or rotations (Figure 3) can be done either on a flat surface or using a Roman chair. [ Figure 1
Torso (abdominal) rotations – Start position Torso (abdominal) rotations – End position
34 inMotion Volume 24, Issue 4 July | August 2014 Figure 3
Figure 2
Plank without a prosthesis
Leg lifts (raises) – Start position Leg lifts (raises) – End position
Figure 4 Gluteal exercises (Figures 4 and 5) and your limb up for at least a count obliques can be done on a flat surface of two before lowering it. Tuck or standing or with a weight machine. your limb inward toward your chest before returning it upward If you’re an above-knee (AK) or knee toward the ceiling. disarticulation (KA) amputee, then lying on a flat surface on your back If you’re comfortable wearing your with a towel or small pillow under prosthetic leg(s) and you belong to Glutes: Downward push – Start position your limb(s) will be needed (Figure a gym, you can try to use a weight 4). Press your limb(s) downward as machine called a “Butt Blaster.” hard as you can so your glutes rise To use it, you are positioned on your up. Tighten your glutes as much as hands and knees, and place one foot you can and hold that position for on a plate and push the plate upward. a count of five. ryT to do three sets I have always found this awkward, of 20 repetitions. so my preference is on a flat surface. If you’re able to wear your prosthesis, Glutes: Downward push – End position You can also do you can also try a glute bridge. In this this if you’re Figure 5 a below-knee (BK) amputee; I find it more comfortable to take my prosthesis off during this exercise. Glutes: Upward thrust – Start position Glutes: Upward thrust – End position If you’re a BK, another option is to be on your hands case, you lie flat on your back with and knees on a flat surface and press your knees bent; place your hands by your limb upward to the ceiling while your side and raise your glutes up as squeezing your gluteal muscles with high as you can and hold that position each repetition (Figure 5). I like to do for a count of five to 10 seconds. Try to at least three sets of 20 repetitions. do three sets of 20 repetitions. Avoid using momentum, and hold
Exercise photos provided by Cindy Asch-Martin
Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 35 It’s a Win-Win. Congratulations—you’re doing great! You push yourself beyond where you’ve ever gone, and you demand the absolute best of your body and mind. Why would you expect any less of your prosthetist? You deserve to work with the best educated, most rigorously trained people. Look for the proven abilities of an ABC Certified Prosthetist. To be certified by ABC means that your specialist has taken many extra steps to get to the top of his or her profession. It means that you win, all the way around. Go to oandpcare.org to find an ABC Certified Prosthetist in your area.
ABC. Simply the Best. oandpcare.org or call 703.836.7114
OandPCare.org is a public service of the American Board for Certification in Orthotics, Prosthetics and Pedorthics, Inc.
advertiser index
American Board for Certification in Orthotics, Fred’s Legs ...... 9 Prosthetics and Pedorthics ...... 36 Hanger Clinic ...... 4 Amputee Supplies ...... 31 Hartford Walking Systems ...... 9 Award Prosthetics ...... 23 Motion Control ...... 37 College Park Industries ...... 10 Össur ...... 2 Comfort Products ...... 31 Ottobock ...... 40 Disabled Motorcycle Riders ...... 23 Scott Sabolich ...... 39 Easier Living ...... 15 Tamarack ...... 33 Endolite ...... 7 TRS ...... 21 Ferrier Coupler ...... 17 WaterGait ...... 19
We wish to thank our advertisers for their support, which helps to make it possible for us to provide important services such as peer visiting, advocacy, our youth camp and national conference to the limb loss community.
36 inMotion Volume 24, Issue 4 July | August 2014 Just what you’ve been fishing for
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I have been going to the Amputee It had been decided that my mom Coalition Paddy Rossbach Youth would come with me because (A) Camp, which I affectionately she wanted us to spend a few days nicknamed “Amp Camp,” for the before camp acclimating to the Taylor Haines past six years. Each time I come heat and time change, and (B) I was (second from left) and friends. back, I gain new experiences, meet 10 years old. new people and find inspiration for acceptance. This year, I’ll be Our first flight was three hours to returning as a leader-in-training, Seattle. After a layover, we went i on to Minneapolis, and finally to but I will never forget the excitement of my first year at camp. Hebron, Kentucky. This confused “I knew immediately me and I anxiously told my mother that I would have no I live in Anchorage, Alaska, so that we were supposed to be problem fitting in — traveling to Cincinnati, Ohio is going to Ohio, not Kentucky. She quite a journey. I first learned patiently explained the Cincinnati I had finally found of Amp Camp through inMotion airport was actually in Kentucky. my people.” magazine. I saw a poolside picture of a line of campers’ prosthetic After a few days of practically legs and I was amazed that there melting in the July heat (I’m from were that many kids who shared Alaska – can you blame me?), it my physical difference. Now I was time for my mother to send know that the campers those legs me off. The closer we got to the belonged to don’t even account airport, the more excited I became. for a tenth of the kids that attend I followed the signs to the little camp every year. area where all the campers gathered and I remember seeing two boys, When I applied and found out that both wearing shorts, proudly I was accepted, I couldn’t wait for showing off their hardware. I knew July to come around. Finally, the immediately that I would have no time came for me and my mother problem fitting in – I had finally to start making our way to Ohio. found my people.
>>> For more information about Paddy Rossbach Youth Camp, please visit amputee-coalition.org/events-programs/youth-camp.
38 inMotion Volume 24, Issue 4 July | August 2014
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