When Amputation Means Freedom to Do You Grow Know Your K ...€¦ · A magazine dedicated to living...

Do You Know Your

K-Level?

September|October 2013Volume 23, Issue 5

Prosthetic Attainability:Changing the status quo?

A magazine dedicated to living well with limb loss

Managing Pain in

Pregnancy With Limb Loss

When Amputation

Means Freedom to

Grow

A Publication of the

http://www.ossur.com

FFor all of the destruction that is an integral part of war, the demands of wartime inevitably generate tremendous advances in technology, including medical care. For example, antibiotics, X-rays, improved techniques in wound and pain management, and lighter, more responsive prosthetics are all byproducts of war. With each of these innovations to improve the care of military personnel, these technologies are gradually refined and filtered through to benefit civilians as well.

However, while there is almost always a war ongoing in some corner of the world, there is an equally constant, but quieter, conflict: the struggle for access to assistive technology.

For those without disabilities, technology is primarily a means of making life more convenient. For people with limb loss, technology can actually bring the impossible within their reach. Assistive technology can enhance the ability of people with disabilities to learn, to work, and to live active, independent lives.

But many people experience obstacles to obtaining such devices and programs – the red tape labyrinths of state and federal regulations, insurance restrictions, rising costs and lack of funding, to name a few. Overcoming these barriers won’t be easy, and will take some time. We must continue to increase the understanding of these problems, implement creative programs to address them and share lessons learned.

This issue touches on the positive, such as the cover story, which explains the importance of understanding your K-level (see page 24), a fundamental factor in the decision of what prosthesis you will ultimately receive and how it will be covered. This issue also takes a look at another facet of the issue – those who choose not to pursue access to technology because they view it as a hindrance rather than a tool (see pages 16 and 38).

Patience, and many small steps, both on the local and national level, will eventually bring us closer to a shared vision where people with disabilities have equal access to the American Dream.

Bill Dupes, Senior Editor

Contact the Amputee Coalition at 888/267-5669 or amputee-coalition.org 3

message from the editor

BE AN INFORMED READER

Editorial content (articles, news

items, columns, editorials, etc.) in

inMotion often contain healthcare

information. As an informed reader,

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

people who are amputees, the person

being interviewed will say something

about his or her personal experience

that may not be entirely consistent

with standard practice. In these cases,

we print what the person said because

we think it gives readers insight into

that individual’s experience that we

believe will resonate with others. But:

We urge you to always check with your

medical team before changing your

own healthcare regimen.

Advertisements in inMotion are

reviewed according to established

criteria and guidelines. We aim

to support public awareness of

commercially available products –

things that might be helpful to you

and to avoid advertisements that

might deceive or mislead the reader.

Acceptance of advertisements in

inMotion is not an endorsement by

the Amputee Coalition. The Amputee

Coalition does not test advertised

products, conduct independent

scientific reviews of them or ensure

their claims. Companies that sell

through the mail must comply with

federal regulations regarding customer

notification if the product is not

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.

Opinions expressed in signed

articles are those of the authors and

are not necessarily endorsed by the

Amputee Coalition.

Printed in the United States of America.

Access to Technology Small Steps

“Progress, of the best kind, is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step.” – Samuel Smiles (1812-1904), Scottish author and reformer

http://www.amputee-coalition.org

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departments3 Message From the Editor

8 Letter to the Editor

11 Events Calendar

36 Advertiser Index


contentsSeptember | October 2013

The Amputee Coalition recognizes the following National Sponsors for their valuable support.

Platinum Sponsors Gold Sponsors Silver Sponsors Bronze Sponsors

sections12 The Doctor Is In Managing Pain in

Pregnancy With Limb Loss

16 Upper-Limb Perspectives Prosthetics: To Wear or Not to Wear

18 Travel & Accessibility Be Prepared!

21 Growing Up as an Amputee Opening Doors

32 Exercise & Fitness Cardiovascular Exercise for Amputees

34 Phantom Fashionista Fabulous, Functional Fall Fashions

38 Perspectives My Journey to Freedom

DO YOu KNOW

Your K-Level?

24

When Amputation Means Freedom to Grow

28

30

Prosthetic Attainability: How can amputees change the status quo?


Phantom Fashionista

Jeff Saul is 17 years old and is entering his senior year in high school

in Clovis, California. He plays water polo and swims competitively. He

received the Student of Promise award from his school counselor during his

Junior year. He is hoping to attend California State University, Long Beach

to receive a major in business and a minor in

cinematography. He wants to enter the film program.

Dee Thompson lives in Atlanta and is a freelance writer. Dee holds a masters in creative writing from the University

of Tennessee. She is a published author of two books and contributed

an essay to the bestselling book The Divinity of Dogs.

Dee also blogs over at The Crab Chronicles.

Élan Young is a freelance writer living in

Walland, Tennessee.

Cindy Asch-Martin is a certified personal trainer

and lifestyle fitness coach, and a left below-knee

amputee.

Ashley Kurpeil is a right-forequarter arm amputee due to medical

misdiagnosis nearly 29 years ago. She is a coach at NubAbility Camp for

limb-different kids and is active in the amputee community, both online

and at various events.

Raymond L. McCue, MD, MBA, FAGOG, has been an obstetrician in

private practice in Manassas, Virginia for the last 25 years. He recently

completed his masters in business administration at Auburn University

and currently serves as president of Medical Staff for Novant Health Prince William Medical Center.

Katie Mettner is a full-time mom, medical transcriptionist, public speaker,

author of the Sugar Series, a left below-knee amputee and a

spokesperson for Ability Dynamics. You can follow

Katie on Twitter at @KatieMettner.

6 inMotion Volume 23, Issue 5 September | October 2013

contributors

InMotion magazine publishes unbiased journalism that seeks to “empower and motivate” living well and thriving with limb loss. The magazine targets amputees and their families and is provided free electronically to all friends of the Amputee Coalition and in hard copy to all subscribers. Each issue covers health, well-being, exercise, life issues and advocacy for amputees and their families. Stories showcase amputees living and thriving with limb loss and profile Amputee Coalition programs and services.

Editorial Board

Marshall J. Cohen Chairman of the Board, Amputee Coalition

Lisa Ann Cairns, PhD Senior Market Analyst for Smith & Associates

Scott Cummings, PT, CPO, FAAOP Scientific & Medical Advisory Committee

Steve Custer Production Manager, O&P Almanac for AOPA

Lacey Henderson Amputee Coalition Paddy Rossbach Youth Camp counselor

Jason T. Kahle, CEO, CPO, FAAOP OP Marketing

Stephen Luce Associate Director for Communications, CDC

David McGill Immediate Past Chair, Amputee Coalition Board of Directors

Nancy Miller Communications professional, consultant and writer for the Courage Kenny Rehab Institute

Leslie Pitt Schneider Amputee Coalition Board of Directors

StaffSusan Stout Interim President & CEO

Mary Beth Gibson Chief Marketing & Communications Officer

Bill Dupes Senior Editor, inMotion

inMotion is published six times a year by the Amputee Coalition, 900 E. Hill Avenue, Suite 290, Knoxville, TN 37915-2568. Send address changes and other requests to the Amputee Coalition at this address. Print subscriptions to inMotion are $24 per year. This publication (journal article, etc.) was supported by the Cooperative Agreement Number 1U59DD000904-01 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not neces-sarily 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 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. ©2013 by Amputee Coalition; all rights reserved. This magazine may not be reproduced in whole or in part without written permission of the Amputee Coalition.

A Publication of the Amputee Coalition

Our Mission To reach out to and empower people affected by limb loss to achieve their full potential through education, support and advocacy, and to promote limb loss prevention.

Coming up in the November/December issue of inMotion:Accessible Holidays

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letter to the editor

IThanks to all who stepped up for this year’s Conference!I would like to take a few seconds to thank the staff of the Amputee Coalition, who put together a great Conference in Orlando!

Many people may not know what it took to pull this off while enjoying themselves. The Coalition lost a huge amount of their budget in a federal budget cut. Due to that cut, nearly half of the Amputee Coalition staff were laid off. The Conference we all enjoyed so much was pulled off by far fewer Coalition staff members than I have ever seen.

How did they do it, you may ask? It was because the non-paid members of the Board of Directors, committee members and other non-paid amputees stepped up to volunteer. They gave up their free time to enjoy the Conference to ensure that others could enjoy themselves.

I was one of the people who helped the staff fold nearly 1,000 T-shirts and fill even more goody bags for close to, if not more than, eight hours, as well as spending time at the registration table, running a session and helping others get to their sessions.

I know that Mary Beth Gibson, Dan Ignaszewski, George Gondo and many other Coalition staff members worked endless hours to prepare for the Conference. Those staff members working at the Conference were up at dawn and going til all hours of the night.

So, to the entire Amputee Coalition staff, thank you for your long hours of work before, during and, yes, after the Conference. The same goes to my many fellow amputees who stepped up to give their time and energy. Together, those who attended the largest Conference yet enjoyed themselves, learned, made new or renewed friendships and had a great time!

– David DunvilleH-Care’s Amputee Support Coordinator, Flint, MichiganNational Director, Amputee Firefighters AssociationScientific & Medical Advisory CommitteeBelow-knee amputee (July 22, 2003)

inMotion welcomes letters, faxes and e-mail.Mail should be addressed to Amputee Coalition, inMotion Magazine, 900 E. Hill Ave., Suite 290, Knoxville, TN 37915.

Our fax number is 865/525-7917. Our e-mail address is [email protected].

All correspondence should include the writer’s name, mailing and e-mail (if applicable) address and daytime telephone number. Correspondence may be edited for purposes of clarity and space.

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NATIONAL DISABILITY EMpLOYMENT AWARENESS

MONThdol.gov/odep/topics/ndeam

NATIONAL MRSA AWARENESS MONTh

worldmrsaday.org

NATIONAL phYSIcAL ThERApY MONTh

apta.org/nptm

OcTOBER 6Össur Leg Amputee Run Clinic

Boston, [email protected]

OCTOBER 8-11Southwest conference

on Disability Albuquerque, NM

cdd.unm.edu/swconf

OcTOBER 12Bowlathon

Skore Lanes, Taylor, MIBuddy Adkins, 734/891-2366

OCTOBER 12-18Million Dollar Challenge Ride

San Francisco/San Diegochallengedathletes.org

OcTOBER 19Kicking For Kids Who Can’t Kick-a-Thon

Washington, [email protected]

OcTOBER 19San Diego Triathlon Challenge

Össur Leg Amputee Run/Mobility ClinicLa Jolla, CA

challengedathletes.org

OcTOBER 20San Diego Triathlon Challenge

La Jolla, CAchallengedathletes.org

OcTOBER 26Santa Barbara Tour de Cure

Santa Barbara, CA diabetes.org

Volume 23, Issue 5 Published six times a year by

Amputee Coalition 9303 Center St., Ste. 100Manassas, VA 20110703/330-1699Fax: 703-330-1688

900 E. Hill Ave., Ste. 290Knoxville, TN 37915-2568865/524-8772; 888/267-5669Fax: 865/525-7917; TTY: 865/525-4512E-mail: [email protected] Web site: amputee-coalition.org

Interim President & CEO Sue Stout

Chief Marketing & Communications Officer Mary Beth Gibson

Senior Editor Bill Dupes

Graphic Design Sexton Printing

Advertising 703/330-1699

Board of Directors

Executive Board:Chairman Marshall J. CohenVice Chair Dan BerschinskiVice Chair Dennis StricklandSecretary Charles Steele Treasurer Jeffrey S. Lutz, CPO

Directors:Ann BerdyRon DrachMichael Estrada Col. Greg Gadson Mahesh MansukhaniLeslie Pitt SchneiderTerrence P. Sheehan, MD

Scientific and Medical Advisory Committee

Danielle Melton, MD, ChairRoberta Cone, PsyDDavid Crandell, MDScott Cummings, PT, CPO, FAAOPJoseph Czerniecki, MDDavid DunvilleTroy Farnsworth, CP, FAAOPRobert Gailey, PhD, PTJacqueline Herbert, MD, FRCPC Samuel Johnson, PharmD, MPH Grant McGimpsey, PhDNancy Payne, MSN, RNBruce Pomeranz, MDTerrence P. Sheehan, MD, Medical DirectorStella Sieber Troy Turner, MBA Stephen T. Wegener, PhD, ABPP, Past Chair

A Publication of the Amputee Coalition

pAD AWARENESS MONThvasculardisease.org/

raising-awareness-stay-in-circulation-campaign

pAIN AWARENESS MONThpainawarenessmonth.org

SEpTEMBER 14Three Forks MT Tour de Cure

Missouri Headwaters State Park diabetes.org

SEpTEMBER 18Thranhardt Golf Classic

Celebration, FLopfund.org

SEpTEMBER 19OPAF Silent Auction

Orlando, FLopfund.org

SEPTEMBER 20-22Cycling Challenge – Ojai Valley

Ojai Valley, CAchallengedathletes.org

SEpTEMBER 21First Fit

Orlando, FLopfund.org

SEpTEMBER 28TODD Field Day

Minneapolis, MNopfund.org

Jordan Thomas Foundation Low Country Boil Chattanooga, TN

jordanthomasfoundation.org

Össur Leg Amputee Run ClinicChicago, IL

[email protected]

SEpTEMBER 30Jordan Thomas Foundation

Golf TournamentChattanooga, TN

jordanthomasfoundation.org

events calendar

SEpTEMBER OcTOBER

Note: Dates listed for events are subject to change. Check Amputee Coalition online calendar and listed Web sites for current information.


http://www.vasculardisease.org/ raising-awareness-stay-in-circulationcampaign

http://www.painawarenessmonth.org

http://www.diabetes.org

http://www.opfund.org


http://www.challengedathletes.org



http://www.jordanthomasfoundation.org


http://www.jordanthomasfoundation.org

http://www.worldmrsaday.org


http://www.cdd.unm.edu/swconf





http://www.diabetes.org




http://www.apta.org/nptm

http://www.dol.gov/odep/topics/ndeam


P

the doctor is in

Pregnancy is a time of change, excitement and anticipation that is a unique experience for each woman and every couple. For a patient with limb loss, certain aspects of pregnancy and delivery will bring special challenges and considerations. Pain management merits special attention throughout all nine months of pregnancy and the delivery.

1st TrimesterDuring the first three months of gestation, the uterus is expanding and may cause uncomfortable cramping. Rising hormone levels can cause nausea and vomiting. Pregnancy is often unplanned and, for women with limb loss, may occur before the end of the grieving and rehabilitation process. There may not be complete acceptance of the loss as women begin to feel the symptoms of early pregnancy. For this reason, healthcare provider teams must explore and address various issues. A thorough review of the injury and management to date is important. Phantom limb pain, including movement, weight and other non-pain sensation, is a significant problem after a traumatic limb loss; at least 5-10 percent of individuals will need medication to manage these symptoms. For example, prior to pregnancy, an amputee may have taken or is still using antidepressants or anti-epileptics. Many of these drugs are safe during pregnancy, but

by Raymond L. McCue, MD, MBA, FACOG

With Limb Loss

Managing Pain in Pregnancy

With good teamwork, understanding and planning, pain and discomfort can be minimized, resulting in a rich and joyful pregnancy and delivery.


not all. Medications taken during pregnancy need to be reviewed by the physician and, if safer alternatives are available, prescribed. In addition to medication, there are various adjunct modalities (complementary methods) available to help with pain management and “morning sickness,” including relaxation techniques, acupuncture and massage.

2nd TrimesterRelief from the persistent nausea generally comes in the second three months of pregnancy. The fetus is fully formed and now in the process of growth and final development. As the uterus grows, connective tissues, called the round ligaments, are stretched. These ligaments are designed to anchor the uterus in the pelvis. The expanding uterus can cause painful tension to develop along either side of the womb, resulting in significant pain in the lower pelvis and groin. Over-the-counter medications, such as Tylenol, can help alleviate the pain and inflammation caused by this process. Rest and positioning will also relieve this discomfort.

Weight gain during pregnancy is normal. The body prepares itself for the anticipated loss of fluids during the delivery by retaining water. This water weight responds to the force of gravity, causing the lower limbs to swell after standing for a period of time. Along with rapid weight gain, changes in shape, posture and gait are common during this stage of pregnancy. When active, this results in greater forces passing through the lower back, hips, knees and ankles. In addition to normal swelling of the residual limb, the redistribution of weight can affect the fit of an amputee’s prosthesis, causing

irritation, new pressure points and, in rare cases, development of bone spurs. Additional padding or wider prostheses may be necessary to accommodate these changes and reduce discomfort.

3rd TrimesterAmbulation (walking) can become problematic in the last three months of pregnancy, especially for individuals with limb loss. The average person takes walking for granted. However,

an amputee, after rehabilitation and physical therapy, appreciates how complicated it can be to walk. Walking is a complex biomechanical operation in which weight shifts while different muscle groups contract and relax with precise coordination. Proprioception (the ability to sense the position, location, orientation and movement of the body and its parts) is critical to successful ambulation. The physical changes associated with pregnancy can confuse your proprioception and result in a fall with injury. More than usual, a pregnant amputee must pay careful attention when going up or down stairs, walking on uneven terrain or stepping on or off a curb.

Back pain can be a problem throughout pregnancy, particularly in the last trimester. As the uterus pulls the lower abdomen forward, the lower back compensates by exaggerating the curvature of the spine. This compresses the spaces between the vertebrae. Pressure develops on the small nerve roots that emerge from these spaces; these nerve roots form the large sciatic nerve. Compression can result in pain along the hip, outside and over the thigh, and down the entire leg out to the toes. Continued compression can eventually lead to numbness and loss of

Managing Pain in Pregnancy

Medications taken during pregnancy need to be

reviewed by your physician.



Keep up on up-to-date information at...

amputee-coalition.org

muscle control. This condition can also trigger or exacerbate phantom leg pain. These same sensations, including “clenching,” can be felt in the amputated limb. Rest, positioning and over-the-counter anti-inflammatory medications will help; however, sometimes prescription medications are necessary.

Labor and DeliveryAll of the standard pain management methods, such as epidural regional anesthesia and IV medications, are available to a laboring patient with limb loss. With proper training and support, labor can also be managed without medication. It is important that the significant other is involved with the doctors or midwives who are managing the labor. He/she will be aware of hypersensitive or tender areas of the traumatized limb, can assist with proper positioning and offer massage as needed. Wearing or not wearing the prosthesis during labor is an individual’s decision.

The significant other will know if and when the prosthesis should be removed.

Pain after amputation, coupled with the normal pain and discomfort of pregnancy, can be a challenge for

amputees and their caregivers. In a general obstetrics and gynecology practice, most

limb loss is seen in older women as a result of chronic disease. Individuals who practice obstetrics or midwifery may have never cared for someone with a traumatic amputation. Amputees

should ensure that their healthcare providers appreciate what makes them

unique. Those providers must have the confidence and willingness to allow an

amputee to educate them and collaborate on strategies for a successful pregnancy and delivery. With good teamwork, understanding and planning, pain and discomfort can be minimized, resulting in a rich and joyful pregnancy and delivery.

Amputees should ensure that their

healthcare providers appreciate what makes

them unique.


Prosthetics:

S

Photograph by Denise Keenan 16 inMotion Volume 23, Issue 5 September | October 2013

Some folks who have upper-limb differences choose to wear prosthetics, and some don’t. There is no right or wrong choice.

My son Michael lost his right hand and wrist to frostbite when he was five years old. I wasn’t there. I was here in America, and Michael was in Kazakhstan, living with his birth family. His family was very poor, and there was no chance he could get a prosthesis.

I adopted a daughter from Russia in 2004, and within a year I was looking for a sibling for her. When I saw my son’s photo for the first time, on an adoption agency Web site, I knew this was a child with a “special need” I could handle. Years before, I had sung in the Knoxville Opera Chorus with a man who was missing his entire arm, and he was a terrific singer and did everything he wanted to do with his one usable arm. He didn’t wear a prosthesis.

When Michael came to live with us in 2007, I was amazed by how he would figure out ways to do everything he wanted to do, without a to

prosthetic. He opened bags of chips with his teeth. He tucked cans under his residual arm and opened them. He dressed himself easily.

I rarely heard him ask, “Mom, would you help me, or do this for me?” I tied his shoes for a while, until he informed me that he didn’t care if they were tied tightly, and he just tucked the laces in after I tied a loose double knot for him. Then he would slip his feet in and out without worrying about untying or re-tying.

The day he got his first prosthetic hand, though, about a year after he got home, was a very happy day for him. He was delighted with the myoelectric hand, and his therapist said she had rarely seen a child catch on so quickly.

The biggest bonus of Michael’s myoelectric prosthetic hand was that it meant fewer stares and awkward questions from other kids at school. The children would ask him about it, and he would demonstrate how it worked, but it was positive attention.

To Wear or Not to Wear

upper-limb perspectives

by Dee Thompson

The day Michael received

his prosthetic hand

Dee and Michael meeting for the first time


This summer, Michael turned 17. I have noticed Michael almost never wears his prosthetic hand. He spends most of each day hanging around the neighborhood pool, where everyone knows him, and when we go shopping or to the movies, he doesn’t even wear his hand. It’s heavy, and hot.

Michael loves sports. He plays basketball, soccer and tennis. He is on his high-school tennis team. He loves throwing a Frisbee and swimming. The prosthesis is never worn for any of his sports. In tennis, he has even figured out a way to serve the ball that works fine. The prosthesis isn’t needed or wanted.

I read a blog, Living One Handed, written by a man named Ryan Haack who has the same limb difference as my son, but he was born missing his hand. He chooses not to wear a prosthesis:

“The main reason I don’t wear a prosthetic arm is because I don’t need to,” says Haack. “I’m comfortable with my body and am able to do everything I need and want to without a prosthetic.

While a prosthetic arm might be useful for certain tasks, for me it would be mostly cumbersome. I wore a prosthetic arm from when I was an infant until around 8th grade, but outgrew its usefulness.”

Lack of functionality is also an issue with my son. His prosthesis does so little – it simply grasps things – that it’s hardly worth the bother. He only wears it when he’s at school, or in a situation where he doesn’t want to get stared at too much.

An occupational therapist who works with a lot of folks with limb differences told me recently that many adults simply choose not to wear a prosthesis because their usefulness is very limited.

The human hand is a very difficult thing to replicate, if you think about it. Our hands are amazingly versatile.

To wear a prosthesis or not? It’s really just a matter of choice.

Photos provided by Dee Thompson

Some folks who have upper-limb

differences choose to wear prosthetics,

and some don’t. There is no right or

wrong choice.



travel & accessibility

The key is PREPARATiOn:

Plan ahead, check and

double-check.

Be Prepared!MMany new amputees feel that their

world is changed forever. They believe that the activities they previously took for granted are no longer possible, including their ability to travel.

The truth is, although travelers with disabilities certainly face unique challenges, they can go anywhere they set their mind to. The key is preparation: Plan ahead, check and double-check. unfortunately, life happens. Even the best-laid plans, etc. But proper planning can help prevent minor issues from turning into major problems.

Start making lists of everything you will need to bring with you. If this is your first time traveling as an amputee, you may want to ask your prosthetist for advice on what type of prosthetic supplies you need to pack. Extra liners and socks are a must, as well as any tools you may need to make adjustments. Don’t forget any medicated creams and ointments you use, as well as antibacterial and alcohol wipes. People with diabetes should pack an ample supply of test strips, needles and syringes, meter batteries and proper snacks to combat drops in blood sugar levels. You never know if you may be sitting on a runway for a long time due to weather or other conditions.


Check Your ProsthesisYou wouldn’t dream of taking a long trip in your car without first getting the car serviced and being certain that it’s in good operating condition. Why do less with your prosthesis?

• Socket – Clean the socket with a mild, nonperfumed soap, using a washcloth. Allow it to air-dry or gently dry it with a soft cloth. Avoid alcohol or commercial cleaners. If the prosthesis has a removable liner, take it out and check for small tears or glue separations at the seams. If you use a silicone suspension system, clean and inspect it in the same way.

• Suspension – Inspect Velcro for frayed edges or weakness in grip. If it has picked up lint, use a brush

to remove foreign particles. If your limb is secured with a strap, look for signs of wear and check to see that the rivets holding it to the prosthesis are tight. Check loops or rings for indications of wear, rust or loose stitching.

• Cover – Check for tears or loose glued areas. Since corrosive salt air and the sun’s ultraviolet rays can damage covers, depending on where your travels will take you, you might want to bring along prosthetic skin.

• General Maintenance – Check your prosthetic leg for looseness at the knee and foot. Listen for odd sounds that might indicate a worn or broken component. If you use a prosthetic arm, check for wear in the cable and harness.

Extra Things to Pack

Extra prosthetic socks

Extra socket liner

Duct and filament tape to repair strap or buckle breaks

Antibacterial cream for abrasions from overuse

Screwdriver with interchangeable bits

Spare suction valve

Plastic bags to protect your prosthesis if you wear it around water or sand

Phone numbers of certified prosthetists and prosthetic facilities in the area in which you are vacationing

(you can get these by calling the

Amputee Coalition).

Check YourWheelchairIf you rely on your wheelchair for more than casual use, it should receive a maintenance check also.

Prepare for Repair – If your chair has a history of maintenance problems, you may want to take along some spare parts. In the worst case, you will need expert repair services. You can usually get service at a medical equipment supply store where you are, but if not, a bicycle shop may be able to get you rolling again.

insure Your Wheelchair – If wheelchairs checked as baggage are damaged, the carrier’s liability is usually limited to a very small amount. Wheelchairs listed as personal property on your homeowners’ insurance are covered, but only for theft or loss by fire. The best practice is to purchase commercial loss and damage insurance for the chair’s full value.

MedicationsTake two sets of prescription medications with you: one in your carry-on and one in your checked suitcase. This will provide an extra supply in case your trip is prolonged by unexpected delays. If you have diabetes and use insulin, bring several unopened vials and store them in at least two or three places. This way you’ll always have an extra supply if you break a bottle. You might wish to take an insulated lunch bag to carry them in. You will also need a lidded container for disposal of used syringes.


800.279.1865www.oandp.com/trs

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Travel Tips Have a list of your medications and

dosages. Give a copy of this list to someone who is traveling with you.

Airlines may not charge to transport medical equipment as long as it is not packed with any personal items. Pack all supplies in a separate bag and label as “Medical Supplies.”

If you encounter any problems with airport personnel, ask to speak to a Complaint Resolution Officer (CRO). Airlines are required by law to have a CRO available in person or by phone at all times when airline counters are open

For more informationBecome familiar with Transportation Security Administration (TSA) guidelines for people with special needs and medical conditions. TSA has a telephone hotline (855/787-2227) for people with disabilities to answer questions; the line is in operation 9am-9pm EST. It is recommended that you call this number 72 hours prior to travel. You can also ask for a supervisor if you have questions about the screening procedure when you are at the airport. For more information, visit the TSA Web site and check out the section that best describes your situation at tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions.

And don’t forget to visit the Amputee Coalition Web site for more tried and true travel tips!


http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions

http://www.tsa.gov

http://www.tsa.gov


http://www.CrutchAbility.com




B

growing up as an amputee

by Jeff Saul

Opening Doors

Becoming an amputee was the best thing that ever happened to me. I was born a healthy baby boy with 10 fingers and 10 toes. But at 17 months old, my life, as well as my family’s, changed forever. A broken leg from a simple fall led to my diagnosis of neurofibromatosis, a genetic disorder that many people cannot spell correctly, let alone pronounce. It basically meant that my tibia was weak and would never heal properly. I would be subjected to multiple surgeries, additional fractures and a lifetime of walking on eggshells to avoid further injury.

Amputation was always an option, but was put off because of the mindset that “the technology will soon be here to help.” That was not to be the case. When I was seven years old, I was given the choice to attempt another bone graft

or amputate. Despite my young age, my parents involved me in the decision, and I underwent the surgery that changed my life forever. I had my left foot amputated to accommodate a metal rod for stability.

After surgery, I went through the normal “Why me?” feelings. I felt different from other kids – I didn’t like the stares and I felt I’d never fit in with “normal” society. However, thanks to a strong support group of friends, I thrived. I played sports I could never play before because of my weak leg. I was recognized as the kid who never gave up and other kids even called me their “hero.” But, despite my acceptance by the other kids, something was missing. I didn’t know any other kids who had amputations. After a couple of years of dealing with my amputation and


A new door has opened for me and i am excited to see what’s on the other side.

Jeff Saul (right), cutting up with friends at camp.



loneliness, my mom told me about the Amputee Coalition Paddy Rossbach Youth Camp. I immediately wanted to go.

It can be very intimidating to walk through the doors at a camp in an unfamiliar state in unfamiliar territory and meet other kids from all over the country (and the world) for the first time. But I wasn’t scared for long. I looked around and I saw kids who were my age, some a little older. What surprised me most was how many of the kids were just like me. Some were missing a leg like me, while others were missing an arm or both legs. Even the counselors had amputations. I felt at home. We laughed, we played and we forgot about our “disabilities.”

Camp was such a memorable experience. One summer turned into two, two turned into four and soon I realized that this past summer I was attending camp for the seventh time. But this past summer, I was more than just a camper – I was a Leader in Training. I was given similar responsibilities as a counselor, but was still a camper, with hopes of someday becoming a counselor.

I saw the wide-eyed kids arriving at camp for the very first time. I remembered being that frightened child and wanted to comfort and guide them to the similar experiences that I had in discovering that my amputation does not define who I am.

After coming to camp for the past six years, Jeff Saul (third from right) attended this year as a Leader in Training.

But this past summer, i was more than just a camper – i was a Leader in Training.


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I bunked with younger campers, which gave me the perfect opportunity to interact and make them feel at home. It was the first time at camp for many of them, and they didn’t know what to expect. I suddenly realized this summer was going to be very different. I was no longer that kid who wanted to have all the fun; I was the young man who wanted to help others feel comfortable, not alone and not to use their amputation as an excuse for not trying new things. I felt like this was my chance to make a difference in a kid’s life. I played with many and bonded with more. I could feel myself growing up as each day passed. I was now someone who the younger campers looked up to just as I had done many summers ago.

A new door has opened for me and I am excited to see what’s on the other side.

Applications for the 2014 Paddy Rossbach Youth Camp

will be posted on our Web site as soon as they become available.

Please visit our Web site or contact [email protected]

for more information.




http://www.gameready.com


inMotion | What is a “K-level” and why is it important?

Sue | K-levels are a rating system used by Medicare to indicate a person’s rehabilitation potential. The system is a rating from 0 through 4 and it indicates a person’s potential to use a prosthetic device if they had a device that worked well for them and they completed rehabilitation to use the device properly. Your K-level designation is important because it is the driving factor in the decision on what prosthetic device to provide to you and the payment for that prosthetic device.

Simply stated, payment by Medicare (and many insurers as well) is guided by the person’s K-level designation.

inMotion | Why does it matter to Medicare what my rehabilitation potential is?

Sue | Medicare wants to ensure that when they pay for someone’s prosthesis, that person will likely be able to use the device. They do not want to pay for an expensive device only to have it sit in the closet unused because it is unrealistic for the person to be up and about. On the other hand, they also want to be sure that if the

DO YOu KNOW

Your K-Level? An interview with Interim President & CEO Sue Stout

about the importance of amputees knowing their K-levels

This is typical of the prosthetic demands of the child,

active adult or athlete.

LEVEL FOUR


person has the potential for walking about in the community and getting back into sports, etc., that they receive a device that will allow that to happen. The prosthetic device should match the person’s need and potential.

inMotion | Tell us a little more about K-levels.

Sue | The current approach for classifying amputee activity levels is determined using the Medicare Functional Classification Level (MFCL), also known as K-levels. K-levels are used by the Centers for Medicare & Medicaid Services (CMS) to ensure uniformity in determining which prosthetic devices are medically necessary for each patient. For example, if your physician feels you have the potential to be able to walk around the house, but you will not have the strength or ability to walk on uneven surfaces or to climb curbs and stairs, you would be rated as a household ambulator (walker), ability level K1.

inMotion | How many K-levels are there, and what are the definitions?

Sue | K-levels run 0-4 and Medicare defines them as follows:

The patient does not have the ability or potential to ambulate or transfer safely with or without assistance and a prosthesis does not enhance their quality of life or mobility. This level does not warrant a prescription for a prosthesis.

The patient has the ability or potential to use a prosthesis for transfers or ambulation on level surfaces at fixed cadence. This is typical of a household ambulator or a person who only walks about in their own home.

The patient has the ability or potential for ambulation with the ability to traverse low-level environmental barriers such as curbs, stairs or uneven surfaces. This is typical of the limited community ambulator.

The patient has the ability or potential for ambulation with variable cadence. A person at level 3 is typically a community ambulator who also has the ability to traverse most environmental barriers and may have vocational, therapeutic or exercise activity that demands prosthetic use beyond simple locomotion.

The patient has the ability or potential for prosthetic ambulation that exceeds basic ambulation skills, exhibiting high impact, stress or energy levels. This is typical of the prosthetic demands of the child, active adult or athlete.

inMotion | How are different prosthetic devices selected for each amputee patient, and how is insurance coverage determined?

Sue | Let’s take Medicare as our example because many private insurance companies pattern their practices on what Medicare does. In Medicare, the Durable Medical Equipment Medical Administrative Contractors (DME MAC) have jurisdiction for processing claims from prosthetists for artificial limbs. If Medicare has questions about a claim, the Medicare contractor may request medical records to demonstrate that the prosthetic arm or leg was reasonable and necessary – or what is called “medically necessary.” Since the prosthetist is a supplier, the prosthetist’s records must be corroborated by the

LEVEL ZERO

LEVEL ONE

LEVEL TWO

LEVEL ThREE

LEVEL FOUR



information in your patient’s medical record. It is the treating physician’s records, not the prosthetist’s, which are used to justify payment.

inMotion | Can you tell our readers more about how medical necessity is determined?

Sue | “Medical necessity” means that the physician can prove that your medical condition warrants the service provided. You might think, “Of course my prosthesis is medically necessary; it’s plain to see that I don’t have a limb.” However, medical necessity is more of a determination of whether or not the service ordered is the appropriate service for your condition. For example, if you are bedridden due to severe lung problems that make it impossible for you to move around, even if you are an amputee, your physician may determine that it is not medically necessary for you to have a computerized prosthetic leg. Your physician is required to determine your potential functional ability to move around, or ambulate. This determination is described as a K-level. In the above example, your K-level would be 0. Even though you are an amputee, because your rehabilitation potential is determined to be K-level 0, Medicare would say it is not medically necessary for you to have a prosthetic leg.

inMotion | How does the physician make a decision about what is medically necessary for me?

Sue | This is important because your functional capabilities are crucial to establishing the medical necessity for a prosthesis. Many prosthetic components are restricted to specific functional levels, so it is critical that your doctor thoroughly documents your functional capabilities, both before and after amputation. Your doctor should assess your physical and cognitive capabilities. This assessment typically includes:

History of your present condition(s) and past medical history relevant to functional deficits

Symptoms limiting ambulation or dexterity

Diagnoses causing these symptoms

Other co-morbidities relating to ambulatory problems or impacting your use of a new prosthesis

What ambulatory assistance (cane, walker, wheelchair, caregiver) you currently use (either in addition to the prosthesis or before amputation)

Description of daily living activities and how they are impacted by deficit(s)

Physical examination relevant to functional deficits

Weight and height, including any recent weight loss/gain

Cardiopulmonary examination

Musculoskeletal examination

•Armandlegstrengthandrange of motion

Neurological examination

•Gait

•Balanceandcoordination.

Since the prosthetist is a supplier, the prosthetist’s records must be corroborated by the information in your patient’s medical record.

>>


Do you know the K-level your physician has determined for you? This will be a number

between 0 and 4.

Has your physician properly documented in your medical record all of the information needed to

determine your K-level? Ask your physician how the documentation supports the need for your prosthesis.

Be sure your prosthetist fits you with a prosthesis that is appropriate for your K-level.

Your K-level affects the kind of foot and/or knee your prosthetist can incorporate into

your prosthesis.

Visit your physician regularly (every 6-12 months) to maintain complete documentation of your

prosthetic care. Discuss your prosthetic use with your physician, including your current and potential K-level; the condition of your residual limb; your socket fit; how your prosthesis is functioning; and any activities that you are unable to perform in your current prosthesis that you would like to be able to do.

What Every Medicare Patient With Limb Loss Should Know

1

2

3

4

5

The assessment points are not all-inclusive and your physician should tailor his/her history and examination to your condition, clearly describing your pre- and post-amputation capabilities. Your history should paint a picture of your functional abilities and limitations on a typical day. It should contain as much objective data as possible. The physical examination should focus on the body systems that are responsible for your ambulatory or upper-limb difficulties or impact your functional ability.

You should be provided with a prescription for prosthetic components that are appropriate for your activity level. Components that are designed for higher activity levels would not be covered under the Medicare policy. Your physician determines your functional ability level. If your functional ability increases over time, your rating can be changed to a higher level.

inMotion | This is all very complex. What is the Amputee Coalition doing to help educate amputees about medical necessity so they can be sure they are getting the right level of prosthetic device?

Sue | An educated patient is better able to ensure he or she is getting the most appropriate prosthesis – and education is a core mission tenet for the Amputee Coalition. Working with our Scientific & Medical Advisory Committee, we are rolling out our “Know Your K-Level” campaign this fall. This campaign will provide information and tools for amputees to use with their doctors, prosthetists and other healthcare providers involved in their amputation care system.


w 28 inMotion Volume 23, Issue 5 September | October 2013

by Élan Young

Basically, things are normal now — and what more could any parent want for their kid than a normal, happy childhood?

When Shonna Shanton’s daughter Savannah was about

3 months old, she and her husband Jim noticed that her

right leg was bowed oddly and they mentioned it to her

pediatrician. “He didn’t think much of it but decided to

send us to an orthopedist just to be safe,” she recalls.

“That’s when we first heard the word ‘pseudoarthrosis’ and

became familiar with options for our daughter’s future.”

Phot

os p

rovi

ded

by S

honn

a Sh

anto

n

When Amputation Means

Freedom to Grow

Savannah Shanton and the series of orthotic and prosthetic devices she has used since she was three months old.


Savannah has pseudoarthrosis of the tibia and fibula, and her bone was bowed in two different directions. Additionally, it had an area with little marrow, so it was brittle. At her doctor’s recommendation, they braced the leg before Savannah was even bearing weight on it to prevent it from breaking. After she was older, she would be able to have surgery to correct the bone.

That was the plan, but at just six months old, Savannah’s leg broke.

Fortunately, their orthopedist was on call when they took her into the Children’s Hospital in Atlanta; he implanted a rod in her tibia and grafted bone from her hip. A few weeks later, before the bone had fully healed, Savannah was fitted with a new leg brace, which she learned to walk with when she was about 15 months old.

This was how Savannah got around for about two years after the surgery. “The brace limited her activities some,” recalls Shanton. “But we were happy that she could walk without pain.”

Then, when Savannah was two years old, the rod in her leg broke. This time, in addition to replacing the rod, the surgeons grafted donated bone marrow around the broken tibia and fibula.

But when Savannah recovered this time, she was still unable to walk. The X-rays showed that not only had the bones not healed, but her body had absorbed all the grafted bone.

So there was another surgery, this time using bone grafted from her hip mixed with a synthetic bone marrow. Post-surgery treatment included wearing an electric bone stimulator at night to encourage the bone to bridge. However, even after these new measures, Savannah still could not bear weight on that leg with a brace.

Surgery looked likely again, which would be the third within a 12-month period. “She didn’t have enough good bone to use an external fixator, so all they could do was try the same procedure again,

but the surgeon didn’t believe that this surgery would be successful,” says Shanton. “This is when we first discussed amputation.”

Savannah’s X-rays were sent to over 60 surgeons worldwide to get opinions, with the hope of finding someone who could save her leg. Few offered any hope of the broken bones bridging; most agreed that amputation would offer her the best quality of life.

Their feedback helped them make the choice, and after considerable thought and prayer, they made the decision to amputate. “It was the hardest thing I’ve ever had to do, but it was the right decision,” says Shanton. “Within 30 minutes of putting on her first prosthetic leg, Savannah was running down the hall and kicking a ball.” This was the first sign that Savannah’s life had already gotten better, and her chances for a future free of surgery and pain were strong.

Since then, they’ve had little trouble with her prostheses, thanks in large part to the care team at Children’s Healthcare of Atlanta. “They have always gone above and beyond to make sure Savannah’s leg fits well, and she gets a new one whenever it’s needed,” says Shanton. As many parents of kids with limb loss know, this is an especially valuable asset – both financially and emotionally. Savannah, who is now 11, will get about one prosthesis per year now, but at one point she hit a growth spurt and needed three new ones within 12 months.

These days, Savannah is active as ever. Besides playing with her two younger sisters who she’s homeschooled with, and other kids in the homeschool community, Savannah recently started adaptive rock climbing. Last year, she and the family attended a local family camp, Camp No Limb-itations. There, Savannah was able to meet other children like her, all trying things for the first time. Basically, things are normal now – and what more could any parent want for their kid than a normal, happy childhood?



How can amputees cHANge the status quo?by Katie Mettner

A back to work and life before their amputation. Instead, they may discover their insurance considers some devices or components experimental, not medically necessary, or beyond the limits set within the insurance plan. Many insurance plans include arbitrary caps on prosthetic device coverage, and there are a few that restrict coverage to one limb per lifetime. Some individuals are told certain components are not “medically necessary” or are considered “experimental, investigational or unproven.”

Yes, you read that right! Some insurance companies consider important components of prostheses

According to Merriam-Webster, the definition of “attainable” is “capable of being attained” and the definition of the word “attained” is “to reach, achieve or accomplish a goal.” If you’re wondering why I’m talking about this, the answer is simple – because everyone is. The more I speak with other amputees and read posts on Facebook and other amputee-related Internet sites, attainability has become a “buzz” word. Why? Because attainability has become the biggest stumbling block for amputees in America today.

How large is the amputee population in America? According to statistics, 1.9 million people are living with limb

Attainability has become the biggest stumbling block for amputees in America today.“experimental, investigative or

unproven” when, in fact, many of these

systems have been around for over a

decade and may have data to support

how they improve the condition of

residual limbs, and offer the amputee

better balance, proprioception and

stability. However, like everything in life,

why pay for something if you can find a

way not to? While insurance companies

will likely continue to find ways to deny

prosthetic devices to amputees, there are

ways we can work together to mitigate

the problem of attainability. So how do

we, as amputees, change this?

loss. With those kinds of numbers, no wonder attainability is becoming a hot button topic. In light of the recent high-profile coverage in the media, now is the time to talk about how amputees cope with attaining prostheses. Just how do we go about getting an arm or a leg that will allow us to get back to everyday activities those without limb loss take for granted, and how do we do it without being forced into bankruptcy?

For some who suffer amputation, they may find that the healthcare coverage they have been paying for all these years is not going to cover the prosthetic device needed to get them

Prosthetic Attainability


To begin, we need to talk about the insurance Fairness for Amputees Act. On August 2, 2013, the bill was introduced in Congress as House Resolution 3020 with the guidance and direction of the Amputee Coalition and their partners; it is intended to ensure that if a health insurance plan offers coverage for prosthetic and custom-fabricated orthotics, then the coverage should be equal to what the health insurance coverage is for medical and surgical benefits within the individual’s plan. For example, arms and legs would no longer be subject to arbitrary caps and restrictions, and would be treated fairly like other coverage within the insurance plan. It would keep group and private insurance companies from capping the benefits so low that the average American working family cannot afford the prosthetic device(s) needed for their child or themselves. This bill simply creates a fair and consistent standard for health plans that already offer this coverage. Currently, 20 states have passed the Insurance Fairness for Amputees law, and there are active campaigns in nearly every state to introduce and pass this bill throughout the country.

You can read more about the bill online by searching “Insurance Fairness for Amputees Act.” Studies have been done on similar legislation that indicate the cost to ensure this coverage would be about $0.05 per member per month, or $0.60 per member per year. For example, my family of five would pay about $3.00 per year. That’s a premium increase I think every American would be more than willing to foot the bill for to ensure adequate and affordable prosthetic coverage if they were to lose an arm or leg.

So, how do we get the insurance Fairness bills passed? And how do we make prostheses attainable for all amputees? The answer is, it won’t be easy. Although progress is being made, we aren’t there yet. What we do know is this: We must educate ourselves about the choices others are making about our healthcare and take back the control. Once we have a firm handle on what the issues are and the road we must walk, then we actually have to lace up our walking shoes and stand up to present a united front to tell the world that arms and legs are not a luxury. .

STOP THE HOP

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Jim W. Buffalo NY Veteran

Instant Mobility...whenever you need it!

20 states (red) have passed the Insurance Fairness for Amputees law.


http://www.fredslegs.com


exercise & fitness

CCardiovascular exercise still seems to be a dreaded activity for many people; however, its benefits include strengthening your heart, reducing body fat and surprisingly, stress, which is critical for a healthy mind and body.

There are many forms of cardiovascular exercises that amputees can take part in, with or without a prosthesis; some are better suited for active amputees, while others are better suited for those who are beginners or who may have medical restrictions.

For those amputees who have no restrictions and wear a prosthetic leg and have no pain or discomfort, there are numerous pieces of cardiovascular equipment to choose from. If you don’t belong to a gym or have access to equipment, you can still walk, bike or hike in the great outdoors. This is a popular option this time of year when the weather is nice and you don’t want to be cooped up inside. However, if you prefer to walk, you need to understand the importance of keeping a steady pace.

cardiovascular exercise for Amputeesby Cindy Asch-Martin

You should always consult your

healthcare provider before starting a new

exercise program.

If you have access to cardio equipment, bikes, treadmills, rowing machines and ergometers, there is no stopping you from getting a healthy workout and achieving the results you want.

For anyone who can wear a prosthesis without pain or for beginners that have little to no

discomfort, walking on a treadmill or riding a bike is a perfect selection to get started.

Rowing machines work well for those with or without a prosthetic leg.

For those in wheelchairs or who don’t use a prosthetic leg, ergometers are another way to challenge yourself. Some styles have seats, while other types sit on tabletops so you can wheel

right up to the table. You can adjust the tension and add more minutes to continue to progress.

Remember: An important aspect of any form of exercise is that you must challenge yourself in order to get the results you desire. To ensure that you continue to make gains, you should change the order of what you’re doing with your exercise periodically. This will help to make your gains more consistent as well as to avoid the boredom of falling into a routine.


In order to strengthen your heart or lose unwanted body fat, you must increase your metabolism. This means keeping a pace that makes your heart work harder. If you’re doing it correctly, your body will begin to get warm and you will begin to perspire. It should also be difficult to have a normal conversation. Listening to your favorite music that has a motivating beat will help you develop and keep a steady pace. For the first few minutes, try to stay at a slower pace so your muscles can warm up and get limber. Then, slowly increase your pace; try to maintain that pace for 10-30 minutes. The length of time will depend upon whether you are a beginner or an experienced walker.

One very important aspect when participating in any sort of exercise is that you need to warm up for about five minutes to loosen up your muscles. I often see people stretch without warming up first, or going gung-ho on exercises right away. This is an unpleasant as well as risky approach to exercising. Cold muscles are like hard toffee and are not flexible, and you can easily injure yourself. Besides, you don’t want to turn this into a chore that you’ll dread having to continue; otherwise, before you know it you’ll find yourself making excuses and eventually calling it quits. Having a friend or partner to participate with can be a helpful motivator.

An important aspect of any form of exercise

is that you must challenge yourself in

order to get the results you desire.



phantom fashionista

Fabulous, Functional Fall Fashions

Here we are, approaching my favorite time of year: Fall! And for those of us rocking lower-limb

prostheses, saying goodbye to the lighter fabrics of summer attire is an annual rite of passage. What’s

great about fall is finding clothes that fit our prostheses

a little bit better. Typically, pants or skirts tend to show the

“buckle” part of my Silesian belt. And while I’ve learned to remedy these prosthetically induced fashion situations (or as I like to call them: PIFS) with patches, this doesn’t always work for lightweight fabrics.

And so, bidding summer adieu with a heavy heart, let us welcome fall and all of its luxurious fabrics. I don’t know about you, but when I think fall fashions, I picture pants

of Italian wools, skirts of heavy brocades, and all things made of leather. And while I love the

look of these fabric types, what I especially enjoy is the way that they fit, when used as clothing.

Starting with wool, the fabric is made from the fleece of sheep or other bovines. Because of

its characteristic crimp and elastic characteristics, the

fleece is easily spun into fabrics. The crimp give wool fabrics more

bulk, which means that clothing made from it tends to have its own

Send your questions and success stories to

[email protected]

hELLO TO ALL YOU fabulous FAShIONISTAS AND WELcOME BACK!

For those of you who are new to this column, I am the Phantom Fashionista and I am a person who loves all things related to fashion, in addition to being a person who has lived with limb loss for 38 years!

structure. This is great with pants or skirts because the fabric has a nice lay to it while skirting away from Silesian belts or other prosthetic accoutrements.

Brocades are a fall favorite for the same reason as wools: They hide stuff and look über fabulous. Starting with the Byzantine era, brocades were woven from silks, often interlaced with silver or gold threads. Modern brocades are made from polyesters and other fiber contents, which contribute to the fabric’s weight without being bulky. So, as skirts or pants, brocade is a classic look with a fabulous functionality as well.

And with this year’s magazines showing that leather is making its fall comeback, I am simply smitten with all things leather, and “pleather” (or polyurethane). Like wools and brocades, leather has a distinct weight to it because of its inherent nature. It is meant to have some “give” and to be form-fitting in an oh-so-flattering way.

Stay tuned for the next issue and keep your PIFS coming to me at: [email protected].

until then, sending you off in style!



I D E N T I F Y

a sports enthusiast

high school principal

college graduate

avid hiker

military veteran

devoted father

doing what I love.

I AM COLLEGE PARKwww.college-park.com/soleus

800.728.7950 I www.college-park.com

CPI-IAM-Soleus-InMotion25.indd 1 7/22/13 9:09 AM

American Board for Certification in Orthotics,

Prosthetics and Pedorthics . . . . . . . . . . . . . . . . . . . . . . . 36

Amputee Supplies. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

AT&T . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Award Prosthetics. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

College Park Industries. . . . . . . . . . . . . . . . . . . . . . . . . . . 35

Comfort Products . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Disabled Motorcycle Riders . . . . . . . . . . . . . . . . . . . . . . . 14

Endolite . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Fred’s Legs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

Game Ready . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Hanger Clinic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Hartford Walking Systems . . . . . . . . . . . . . . . . . . . . . . . . 31

Motion Control . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Össur . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Ottobock . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Scott Sabolich . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

Texas Assistive Devices. . . . . . . . . . . . . . . . . . . . . . . . . . . 37

TRS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

U.S. Coast Guard . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40

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.


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h


perspectives

by Ashley Kurpiel

“After months of lugging this bulky device....I shed my burden and began

a journey to freedom.”

My Journey to

Freedom!Having been a full quarter amputee (due to misdiagnosis) since the early age of 3, the loss never registered with me. I tried wearing a heavy shoulder/arm/hand until I realized I was simply doing it to please my parents and look “normal.” After months of lugging this bulky device of plastic, screws and rubber, I shed my burden and began my journey to freedom.

The appearance of the missing quarter of my body inevitably drew attention and questions. It became obvious I would have to either withdraw and retreat or go forward and be ready to explain the misdiagnosis and needless amputation, wait for mouths to drop after the explanation, and then help them realize I’m OK! My main tools of creation (little things like scissors, reachers, mirrors, etc.,

and a home health provider (mom) carry me through life and assist in attaining the feeling of what others might

consider “normal.”

I have fibrodysplasia ossificans progressiva, a rare, disabling genetic condition that causes bone to form in soft tissue such as muscles. Because of my disease, there’s not much foot action to compensate for my missing arm. However, the one leg/foot that does

work gets me a few places before tiring; therefore, the ability to stand on two legs is a bonus for me. With the

love and help of my friends, a successful fundraiser paid for the design of a beautiful race chair, making it possible to race

and enjoy the wind in my face – thanks to my four-limbed (and sometimes two-limbed) racing friends pushing me to the finish line!

I can appreciate the happiness and progress that others have been able to attain through the efforts of those who have dedicated themselves to meeting the needs of amputees. As a volunteer for a camp for children with limb loss or limb difference, I feel happiness for these kids, knowing what’s ahead for them with all this fabulous technology. We’ve come a long way!

As for me, however, it doesn’t look like another prosthesis is in my future, but who knows? Although my one arm doesn’t work very well, I travel, surf, use an iPhone, feed myself, drive a golf cart, etc. As long as one leg can move/bend and my one arm can at least extend a little forward, life will continue to be “normal.”

http://www.scottsabolich.com

900 E. Hill Avenue, Suite 290Knoxville, TN 37915-2568

Non-Profit OrgUS Postage

PAIDTwin Cities, MNPermit No 1096

™

Nationally Sponsored by

by Showing Your Metal

April 27, 2013 is National Show Your Mettle Day for amputees across America. As part of National Limb Loss Awareness Month, the Amputee Coalition is asking amputees who feel comfortable (and are able) to make their prosthetics (or chairs) visible on April 27. For more information, go to amputee-coalition.org or visit us on Facebook at facebook.com/AmputeeUSA.

Stand Proud. Stand Together.Homeland Security

Serving my country will always be important to me. That’s why I joined the United States Coast Guard as a civilian employee. The U.S. Coast Guard offers rewarding opportunities to veterans like me, people with disabilities, and others from diverse backgrounds to create a positive work environment.

vessel safety gives me the chance to do something that matters to me—helping to save lives.

This is my career. This is how I serve.The U.S. Coast Guard offers exciting career opportunities in IT, Engineering, Finance, Law, Procurement/Contract

Find your next job as a civilian employee at the U.S. Coast Guard. To learn more or apply, visit www.CoastGuardCivilian.com.

U.S. Coast Guard is an Equal Opportunity Employer.

U.S. COAST GUARDCIVILIAN CAREERS

http://www.coastguardcivilian.com

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