AMPUTEE SUPPORT GROUP OF

NORTHERN VIRGINIA NEWSLETTER

Monthly Meetings:	First Tuesday of every month, 7:00-8:30 p.m., Telestar Court Building, Gemini Room, 2990 Telestar Court, Falls Church, Virginia
Contacts:	Andy Ryder, 703-768-0763, Meeting Leader Beth Harris, 540-439-3656, betheharris@earthlink.net, DB Coordinator Joce Graham, 703-256-0245, jocegraham@cox.net, Editor & Publicity Jason Bulger, 301-680-2159, jason.bulger@medstar.net, Librarian
Web Page:	www.inova.org/rehabilitation/amputee_support.htm
E-Mail Address:	asgnva@earthlink.net
Mailing Address:	c/o Beth Harris, 6316 Sumerduck Rd., Remington, VA 22734-2308

Amputee Support Group New Year Meeting Small But Enthusiastic!

The enthusiastic participation of new amputee support group members as well as the active and open sharing of other experienced amputee group members led to some lively conversations at the January 2, 2007 meeting of the Amputee Support Group of Northern Virginia (ASGNVA)!

Those who attended the support group meeting included members: Amber Nicholson and her family and longtime members Beth Harris and our support group meeting leader, Andy Ryder.

An open discussion about Talking Back to Your Doctor was the topic of the ASGNVA meeting. Andy and Beth shared their own experiences about talking to their own doctors as well as reciting other stories of other support group members and their experiences. For those of you who did not attend the meeting, there is a short article and checklist included in this newsletter pertaining to this subject.

Happy New Year To You and Your Family!

ASGNVA wishes you and your family a very happy and healthy New Year for 2007. ASGNVA’s New Year resolution is to try and serve the support group in whatever way that it can. Due to limited funds and other resources, we will focus specifically on trying to meet the needs of new amputees, as amputation is a major life impact comparable to having a stroke or another major devastating illness with physical complications.

As an amputee support group member, please consider making a resolution to try and attend the support group meetings. At almost every meeting we have new amputees that could use the wisdom and expertise of experienced amputees. Currently we have an above-elbow amputee that could use a peer to speak with and, so far, she has only been able to talk with leg amputees. We need you to add your experiences and “tricks of the trade” to the content of the meetings. Only then can the real “support” portion of the Amputee Support Group actually work. Please try and attend some meetings in 2007 and make a positive difference in the lives of your fellow amputees.

The next ASGNVA meeting will be on Tuesday night, February 6, 2007, from 7 p.m. to 8:30 p.m. at the Telestar Court Building in Falls Church, Virginia. At the February support group meeting, the topic to be discussed will be: “How To Talk Back To Your Prosthetist.”

Amputees, their family members and friends as well as any professional medical personnel are all encouraged to attend the ASGNVA meeting for free. Parking is also free. Please contact Andy Ryder at 703-768-0763 for more ASGNVA meeting information.

We can achieve our goal as an amputee support group to provide help and support to any fellow amputees in need only by sharing our experiences, feelings and issues as amputees.

Please reach out in whatever way you can to help with ASGNVA – come to a meeting and find out how – or make a donation to Fund 352 of the Inova Health System Foundation. Fund 352 is ASGNVA’s fund to publish and distribute our newsletter and put together and distribute ASGNVA’s New Amputee Information Packets. ASGNVA does not charge membership dues and depends entirely on the generosity of its members and donors to contribute to this fund.

To contribute by check or money order, make it payable to Inova Health System Foundation, Fund 352, and send to Inova Health System Foundation, 8110 Gatehouse Road, Falls Church, VA 22042-1217.

To obtain a contribution form, call the Inova Health System Foundation at 703-289-2072.

To contribute by credit card over the Internet, go online to:

https://connect.inova.com/j/inovanet.srt/forms/donation/donatenow.htm.

Remember to indicate Inova Health System Foundation Fund 352.

Current Support Group Resources

ASGNVA has been meeting and working over 20 years to have resources available, at no charge, to our members. We have a large database of amputee members that can be peer matched with a new amputee, if requested. ASGNVA has created and distributes our New Amputee Information Packet to all new amputees. The following resources are also available to ASGNVA’s members.

ASGNVA Lending Library — Come to a meeting, borrow a book and grab some new handouts. To borrow materials from our Lending Library, contact Beth Harris (asgnva@earthlink.net or 540-439-3656).

ASGNVA Web Pages — Inova Fairfax Hospital’s official ASGNVA web page can be found at: www.inova.org/inovapublic.srt/rehabilitation/amputee_support.htm.

The UNOFFICIAL ASGNVA WEB PAGE can be found at the following URL on the Internet: home.earthlink.net/~asgnva/ASGNVA.html. Newsletters and other information will continue to be added to the unofficial web page, as applicable. Contact Beth Harris, 540-439-3656, asgnva@earthlink.net, regarding the unofficial web site.

ASGNVA Monthly Meeting — The February meeting is scheduled for February 6, 2007, 7:00-8:30 p.m., at the Telestar Court Building. The discussion topic will be: “How To Talk Back to Your Prosthetist.” For questions or additional information, please contact Andy Ryder at 703-768-0763, or Beth Harris at 540-439-3656 or e-mail asgnva@earthlink.net.

Birthday Celebrations: January and February 2007 —

SANDRA T.	JANUARY	12
STEPHEN M. JEANNE M. CATHY Y.	JANUARY	13
DON D.	JANUARY	22
GLENN W.	JANUARY	29
ROBERT H.	FEBRUARY	3
DAVID H. BRIAN J.	FEBRUARY	4
CHARLIE C.	FEBRUARY	14
DR. WAN SHIN	FEBRUARY	18
JAMES H.	FEBRUARY	19
ALTHENIA M.	FEBRUARY	28

CALL TO ACTION - Virginia's Fight for Prosthetic Coverage

You are probably aware that an increasing number of people living with the loss or absence of a limb face daunting obstacles from third-party payers when trying to obtain the prosthetic care they need to enable them to return to an active, productive lifestyle. That is why the Amputee Coalition of America (ACA) is working with activists across the country to introduce legislation requiring the coverage of prosthetic devices and components. 

Making Progress: With help from the ACA and its members, Rhode Island, California and Massachusetts all passed legislation in 2006.

In Your State: The ACA is working with patients, practitioners and activists to start a campaign for prosthetic coverage in Virginia! We need your help!

YOU CAN HELP!

Join The Campaign:  People like you are working to pass legislation in Virginia.  There are many ways you can help, through letters, phone calls and e-mails. To find out more about how you can get involved in the Virginia campaign, contact: appll@amputee-coalition.org!  

Spread the Word: Help spread the word by sending a letter to your representative, explaining the need for legislation to protect access to prosthetic coverage.  This will help educate your legislator and demonstrate public support. A sample letter is included below for your convenience.

SAMPLE LETTER TO ELECTED OFFICIALS

Dear Representative/Senator ____,

Without legislation to ensure coverage, many people living with the loss or absence of a limb face discouraging obstacles when trying to obtain prosthetic care. That is why local patients, doctors and other community leaders are working with the Amputee Coalition of America (ACA) in pushing for a bill for prosthetic coverage. 

Obviously, the biggest concern anyone has about passing a new mandate is cost. People fear that big jumps in the cost of insurance will reduce access to healthcare.  None of us want to see health insurance costs pushed beyond the reach of the average consumer. In actuality, the public sector would see savings because appropriate private insurance coverage prevents shifting costs to the public sector.  Our best financial data to support this comes from Colorado. They were the first state to pass prosthetic parity legislation in 1998. 

A Department of Health Care Policy & Financing report found that the maximum increase in premiums for prosthetic provision would be about 12 cents per month. That’s less than $1.50 per year. That’s not going to push anyone off the insurance rolls or put anyone out of business. It will, however, get people the care they need to get back to work and live independent, productive lives. 

Subsequent reports in Massachusetts and California also found that the cost to cover prosthetic devices would be minimal and would actually result in savings to the public and private sector. Both of these states passed bills requiring coverage in 2006.

Many hard-working people in Virginia are prevented from living full lives because they cannot get the care they need.  I hope you will support the bill for prosthetic coverage!

Sincerely,

Name, Address, Phone

“The present was an egg laid by the past that had the future inside its shell.”

Zora Neale Hurston

"Volunteering is a great way to meet people while fighting for a good cause—prosthetic coverage for everyone!"

On December 20, 2006, the ACA held a holiday party in the Washington, DC office for the limb loss community. Since the opening of the advocacy office in May of 2006, the staff has been working to engage activists from the metro area.

The first annual holiday party was an opportunity to share updates on the recent progress made in the national campaign for prosthetic parity.  The ACA also took advantage of the event to present awards to two volunteers for their dedication to the campaign.

Louis Wolf and Jessica Ciacco both received awards.  Wolf and Ciacco volunteered many hours of their time to the campaign throughout 2006.  Their time and commitment is greatly appreciated!

Congratulation to Reed Fawell for winning a free massage in the raffle drawing!  The raffle and sale of LIMBSTRONG wristbands helped the ACA raise over $200 for the campaign. Every amount helps!

The holiday party was the official kick off for a new and exciting volunteer program designed to mobilize members, healthcare providers, coalition partners, family members, and friends to get involved in the Action Plan for People with Limb Loss (APPLL), the ACA’s national campaign for prosthetic parity. The new volunteer program will enable us to reach our goals and provide additional resources to the 21 states (Virginia is one of the states!) that are working to advance prosthetic coverage legislation in 2007.

Our Next Volunteer Night Is Tuesday, February 13, 2007.

WHAT:	Volunteer Night to support prosthetic parity bills
What will we be doing?	Volunteers can choose to make phone calls to raise awareness about the campaign, assist with fundraising mailings, or help build the national campaign database
DINNER AND REFRESHMENTS WILL BE PROVIDED
DATE:	Tuesday, February 13, 2007
TIME:	6:30 pm - 8:30 pm
WHERE:	1436 U Street, NW, Suite #104, Washington, DC, between 14th and 15th Street
PUBLIC TRANSPOR-TATION:	The closest Metro is U St/African-American Civil War Memorial/Cardozo (Green Line). From the Metro, it’s about three long blocks to the office. The office can also be reached by several bus lines, including 52, 53, 54, 90, 92, 93, 96, 98, S1, S2 and S4
PARKING:	Reeves Center Garage. The entrance is behind the Reeves Center on U Street, just west of 14th Street and across the street from Extra Storage Space. The flat rate is $7 or metered parking is available on the street
RSVP:	Please RSVP to Jeremiah at 202/742-1885 or jperez@amputee-coalition.org

ACA volunteer nights will be held the third Wednesday of every month!  The next volunteer night is an exception to that rule and will be February 13 (Wednesday, February 14 is Valentines Day).

Thank you for your continued support!

How To Talk To Your Doctor

As Published in Remedy Magazine

You’re sitting, half naked, in a chilly exam room, surrounded by medical equipment, anxiously waiting to be poked and probed by an important looking person in a white coat who is likely in a rush to get to the next patient. No wonder you can’t remember the questions you wanted to ask or focus on what the doctor is trying to tell you.

You are not alone.  Millions of Americans find communicating with their doctor a frustrating, nerve-wracking experience. But there are some things you can do to make sure you get what you need from those medical appointments.

Go Prepared

• Write down your medical history and take it with you, advises   James King, M.D., FAAFP, a family physician in Tennessee and president-elect of the American Academy of Family Physicians. The list should include names and doses of all prescription, over-the-counter, and herbal medications you take; surgical procedures you’ve had; diagnoses from other doctors; and times and reasons you’ve been admitted to the hospital. Armed with such information, “the doctor can quickly move past medical history and get to your real concerns,” Dr. King says.
• Write down questions you want to ask. Or, if you’re still worried that you won’t cover everything, ask someone to go with you to help you remember.
• Know the main concern you want to discuss and come prepared to deal with that first. “It’s not unusual for patients to talk about other things, and when their time is about up, they bring up the main reason they are there,” Dr. King says. “Make sure you start with your most pressing concern.”

Speak Up

• When you see the doctor, don’t beat around the bush. “Someone may come in complaining of headaches, when their real question is ‘Do I have a brain tumor?’ Dr. King says. “The more honest you are, the better the physician can treat you and take care of your problem.”
• Be as open as possible about sensitive, embarrassing information.  “Abusive situations at home and drug and alcohol use are things we need to know about,” Dr. King says. Doctors have heard it all and are not easily shocked, and they are duty bound to protect your privacy. 
• Don’t be afraid to ask for a referral if you would feel more comfortable discussing a personal topic with a doctor of the opposite gender. 
• Don’t worry about using the correct medical terms. Just describe your symptoms the best you can. Doctors are trained to pick up on key words or phrases that help them understand what is really going on.
• Get the information in writing.  To be sure you’re clear about what the physician tells you, take notes or tape record the conversation. Or, ask the doc to write down the meds or tests he’s prescribing and the name of the condition you have. Most doctors also have written materials on various drugs and medical conditions that they can give you to read at home. If these aren’t offered, ask.

Follow Up If Necessary

• Call back with any questions that arise after you get home or that you discover you forgot to ask. Sometimes the nurse can answer your question. If not, don’t hesitate to ask the doctor to call you back.
• Ask your primary care physician to decipher information from specialists. “A lot of my patients who see specialists come back to me as an interpreter to go over the reports and medications,” King says. That’s why it’s so important to find a medical ‘home’, a primary care physician you feel comfortable with who can help you navigate the health care system.”

“We want to be able to answer your questions,” Dr. King concludes, so the more specific and honest you can be, the more it will help us do our job. And the more prepared you are when you come in, the less nervous you’ll be – or if you are nervous, you’ll still get your concerns addressed.”

How to Manage Your PCP

Every doctor is busy, but it's crucial for your health that your primary care physician (PCP) is someone you can rely on. According to the book Special Treatment: 10 Ways to Get the Same Special Health Care Your Doctor Gets, if they are perpetually late or display any of the following behaviors, it's time to switch doctors.

x Red flag: The doctor has limited office hours and/or tells you to go to the ER if anything comes up while he's off-duty.

x Red flag: The wait for a checkup (a well visit) is several months.

x Red flag: He won't even discuss a new treatment you've read about.

x Red flag: He refuses to provide patient references.

x Red flag: His support staff treats you rudely more than once.

Grasping the Importance of Our Hands

by Douglas G. Smith, MD, ACA Medical Director

“The art of life is to show your hand.” – E.V. Lucas, English author and critic

Our hands do so much for us. They are capable of a wide variety of functions: touching, grasping, feeling, holding, manipulating, caressing, and more. They are a vitally important part of who we are and how we see ourselves.

Our hands can perform extremely gentle and precise actions such as writing a letter, painting a picture, threading a needle or playing a violin. Our hands also enable us to perform heavy labor, such as digging with a shovel, swinging an ax, using a jackhammer to drill through concrete, or pounding a railroad spike with a sledgehammer. We use our hands to feel whether something is rough or smooth, hot or cold, sharp or dull. We hold a child’s hand as we cross the street. We caress the hair of a loved one.

Even when we’re talking, our hands are a key part of who we are and what we say. Many of us use our hands to help express ourselves while we’re talking. There’s an old joke: “If you want me to stop talking, tie my hands!” You probably know people who can’t talk without using their hands for visual aids. You might be like that yourself. Our hands play such an important role in how we communicate, we even use them regularly in figures of speech. Common phrases include: “touching on an important point;” “grasping a concept;” “getting your arms around an idea;” “taking a hands-on approach;” “fingering the bad guy;” and “reading a map like the back of your hand.” And, of course, the hands literally do the talking when a person uses sign language.

When I think about the differences between our upper and lower limbs, I’m reminded of the song “These Boots Are Made for Walking’” by Nancy Sinatra. That’s because, in essence, our legs are made for walking. Our hands, however, do so much more. The hand is an amazingly multifaceted “terminal device” located at the end of the arm. You can compare it to the end piece on a big erector set. Your shoulder, upper arm, elbow, forearm and wrist are all part of a biological erector set. They are designed to put your hand where you want it to be, doing what you want it to do. They not only put the hand into the positions you want, they lift, rotate and stabilize it.

The physical space in which we move our hands, their global sphere of motion, exceeds our “personal space,” as illustrated in Figure 1.

We can extend our hand beyond where it normally reaches by thrusting our shoulder and arm forward. We can lean back to reach far behind us. Your legs work within the plane of your body, within the plane of walking. Sure, it’s cool to be able to bring your foot up behind your head, but, unless you’re a ballet dancer, you don’t need to do that. But there is many times when you need to place your hand behind your head, such as for grooming, or to stretch forward to grasp something that’s out of reach. To take off your shoe, you need to get your hand to your foot. It’s this incredible ability for hand placement that helps highlight a big difference between the abilities of the hand and foot.

The Brain, Body Image and Saying “Hello”

The brain dedicates a lot of “space” to the face and hands. The illustration of the little man in Figure 2 helps show the parts of the body that the brain is most concerned with. Note how the hands and face are especially emphasized. That means a large portion of our gray matter is devoted to those things and functions pertaining to the face and hands, the two leading characteristics of our body image.

Think about it. We’re more likely to show the world our face and hands than any other part of ourselves. When I look around a lecture hall while giving a talk, the audience’s faces and hands are always visible. If the weather is warm, some might be wearing shorts so part of their legs are visible. A sleeve-less blouse reveals more arm. But what we typically see of other people most often are the face and hands.

People may have different beliefs, opinions and traditions throughout the world, but one universal element of our humanity is that people in so many different cultures and walks of life use their hands to greet one another. In the West, this usually involves shaking hands with another person. A handshake can mean either “hello” or “goodbye.” Historically, it’s also is a way of showing another person you’re not concealing a weapon in your hand. The handshake not only conveys a greeting, it lets another person know whether you’re friend or foe.

Elsewhere, people greet each other with the hands extended, palms together. This can be a gesture of “welcome” or “farewell.” It also can convey another message. In some parts of the world, leprosy (Hansen’s disease) still exists. When this microbacterium attacks the nerves, it often results in muscle atrophy in the hands, creating a visible hollow between the thumb and index finger. In some cultures, extending your hands may show another person that you don’t have leprosy. The gesture says, “My hands are healthy, so I am healthy.”

No matter the culture or social context, our hands and face are parts of the way we present ourselves to others. A smile is intended to convey warmth and friendliness. An extended hand or hands are designed to convey a greeting and show another person we are not dangerous or ill. The hands and face are the most important parts of body image.

Surgery and Decision-Making

There are significantly different schools of thought concerning amputation surgery or salvage for an upper or lower limb. When deciding whether to embark on a course to salvage a severely injured leg or choose amputation, the leading consideration is whether the person will be able to walk on the injured limb and it can support his or her bodyweight. If not, amputation may offer a course that will reduce pain and enable the person to undergo prosthetic rehabilitation.

With upper limbs, it can be difficult to tell early in the surgical decision-making process whether the hand will retain some aspects of grasping and positioning if salvage is attempted. My view is that, generally, if the person can retain some grasp and positioning ability, it is beneficial to attempt to save an upper limb because it probably will be more useful than a prosthesis. It’s not unusual to wait, even for years, to see how much useful function actually returns before deciding whether to proceed with an amputation.

When thinking of the benefits of saving an upper limb, even one that will have extremely limited function, my thoughts turn to former U.S. Senator and presidential candidate Robert Dole. Dole suffered severe wounds in World War II that left his right arm virtually immobile. He was hit by enemy machinegun fire when he crawled out of a foxhole to help a fellow solider that had been wounded. His right arm was so badly injured, it was barely recognizable. He was not expected to live.

But Dole survived and went on to undergo nine operations over the next three years to rehabilitate his arm. Early on, Dole realized that a limb with very limited function appeared empty and inactive. He discovered that positioning a pen in his hand added a sense of function and drew less attention to his disability.

After his presidential bid in 1996, Dole delivered the keynote address at a meeting of the American Academy of Orthopaedic Surgeons. The senator discussed his orthopaedic surgeries, physical limitations and pain, among other topics. Senator Dole overcame a devastating injury to become a dedicated public servant and one of our nation’s leaders.

Pain and Upper-Limb Amputations

Unfortunately, many people with upper- or lower-limb amputations experience amputation-related pain. In my practice, people with upper-limb amputations seem to have more vivid and intense amputation-related pain problems. This pain can be caused by neuromas, the mushroom-shaped growth of nerve endings that often scar at the end of severed nerves. Neuromas in the arm tend to be far more sensitive and irritated by pressure than neuromas in the leg. Also, while people with either upper- or lower-limb amputations may experience phantom pain, the pain tends to be more vivid and intense in the upper limb. Often, positional phantom pain involves a feeling that the missing hand and wrist are forced into a severely flexed grip position.

As previously discussed, pain in the upper limbs for people with amputations may stem, in part, from the amount of space the brain devotes to our hands. Simply put, our brain may be more focused on our hands. Plus, the hand typically has more sensitive nerve fibers. For example, we use our hands to feel whether something is hot or cold, smooth or rough, sharp or dull because the sensation of touch is strongest in our fingers and hands. Our hands are at the end of the “erector set” of our arms, so they’re designed to be used for touch as well as placement and grasping.

Prosthetics

Upper-limb prostheses are more complex and complicated than lower-limb prosthetic devices. Remember, our hands perform a huge range of activities, from gentle and precise to industrial strength. The primary function of our legs is walking. Lower-limb prostheses do an amazing job in helping people to walk again. They really replace the primary function of walking and, sometimes, even running. But we demand more from our hands.

Whether it’s lifting a cup, moving a chair or scratching the back of your head, you use your hands in a different set of motions in a three-dimensional plane countless times per minute, yet they resolve in a unified motion to complete the tasks. Despite many marvelous technological advances in prosthetic engineering, upper-limb prostheses just can’t duplicate all these motions. We often don’t need to actually see our hands while they work. But a person with upper-limb prosthesis does need eye contact with the device to make sure it’s doing what he or she wants it to do, where it needs to be done.

For example, if you want to pick up a cup, you think, “No problem.” You reach for it, grasp it, bring it up to your mouth, drink, then put it back down in what you think of as one continuous motion. But actually a series of many complex motions went into performing this simple task. You may not have been conscious of it, but part of your brain was constantly firing a series of commands like an air traffic controller: “Shoulder forward; elbow open; hand rotating, opening, closing; wrist lifting, no tipping, no spilling; bring it to the mouth; easy does it, now stop; check temperature before proceeding.” Our brain is processing a million things at once, yet we’re barely conscious of it, if at all. The hand gives us so much sensory feedback, details that prosthesis simply can’t transmit to the brain. As Helen Keller once said: “I sometimes wonder if the hand is not more sensitive to the beauties of sculpture than the eye.”

Upper-limb prosthetic use requires a tremendous amount of thinking to become fluid and dexterous. In fact, the thinking can become so complex that it becomes overwhelming. A person who loses a hand or arm may decide it’s simpler and less mentally taxing to use only his or her sound arm, rather than a prosthesis. It becomes far more automatic to use the sound arm than to expend the mental energy necessary to think through the many steps of a complex motion when using upper-limb prosthesis.

Prosthetic technology in general has advanced tremendously over the years. But reproducing function has been more successful for lower limbs than upper limbs. Nothing yet can absolutely replace the loss, but prostheses for legs tend to fill in more adequately than prostheses for arms, both functionally and cosmetically. With pants and shoes, it’s easier to conceal a lower-limb prosthesis. The human factor is also involved. Most patients I’ve seen who have had major lower-limb loss have a strong desire to walk again. So they work, sometimes long and hard, to learn how to use a prosthesis. While technology has produced some marvelous upper limb prostheses, many patients choose to use their remaining sound limb, instead of prosthesis, for most or all functions of the upper limb.

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along. . . You must do the thing you think you cannot do." ~Eleanor Roosevelt

SHARE and GAIN WISDOM and AMPUTEE EXPERTISE!

ATTEND YOUR AMPUTEE SUPPORT GROUP MEETING!

ONLY YOU CAN MAKE IT WORK!

7:00-8:30 PM

Contact Andy Ryder at 703-768-0763 or Beth Harris, 540-439-3656, ASGNVA@earthlink.net

Amputee Support Group of No. VA

c/o Beth Harris

6316 Sumerduck Road

Remington, VA 22734-2308

^Discussion Question/Subject: HOW TO TALK TO YOUR PROSTHETIST!

February Meeting Cancelled Due to the Weather Next Meeting is March 6, 2007 PUT IT ON YOUR CALENDAR NOW!