AMPUTEE SUPPORT GROUP OF

NORTHERN VIRGINIA NEWSLETTER

Support Group Meeting

The Amputee Support Group of Northern Virginia (ASGNVA) did not meet on December 6 due to the weather.  Please remember our Winter Weather Meeting Cancellation Policy.  Our speaker, Chris, has re-scheduled for the January meeting and has been apprised of the cancellation policy. 

ASGNVA Winter Weather Meeting Cancellation Policy

News and Announcements

ASGNVA Funds and Contributions — I have been unable to verify, after repeated requests, if there have been any contributions to ASGNVA Fund 352 since August 2005.  If you made a contribution to ASGNVA’s fund and I have not noted it here, let me know so that I can check on it.

          This is ASGNVA’s fund to publish/mail our newsletter and New Amputee Information Packets.  ASGNVA does not charge any dues.  If you can, please make a contribution today.

          To obtain a contribution form, call 703-289-2072.

          To contribute by check or money order, Payable to Inova Foundation Fund 352, Inova Health System Foundation, 8110 Gatehouse Road, Falls Church, VA 22042. 

          To contribute by credit card, https://connect.inova.com/j/inovanet.srt/forms/donation/donatenow.htm.

Remember to indicate Inova Foundation Fund 352.

ASGNVA Web Pages — Inova Fairfax Hospital’s official ASGNVA web page:

www.inova.org/inovapublic.srt/rehabilitation/amputee_support.htm.

The ASGNVA UNOFFICIAL WEB PAGE:  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 or asgnva@earthlink.net, if you want anything added to the page, find something missing or wrong, etc.
 

ASGNVA Lending Library — Come to a meeting and borrow a book and pick up the new handouts. To borrow materials from ASGNVA’s Lending Library, please contact Jason Bulger or Beth Harris (see contact list on page 1).

Services and Products

ACA Online Support Group — I think we can all agree that a support group can be an integral part of the recovery process for a new amputee. But there are times when you might not be in the area, or are unable to attend your group for a variety of reasons.

          Please keep in mind that you can get an updated listing of support groups in your state by going to ACA’s Web site at www.amputee-coalition.org/support_groups/npn_group_list.asp or by calling Susan Tipton at the toll-free number below.

          There are many amputees who may be unable to attend a group. To help try and fill that need, ACA developed an Online Support Group. It has been active for approximately two years and currently meets once a month. It is professionally facilitated by Warren Sumners, who is also an amputee. To join the group, you must meet the following criteria:

• Participants need a computer with Internet access and a Java-enabled Web browser.
• Participants must complete the Registration Form and Physician Confirmation Form and return them to the ACA. The forms can be downloaded from the ACA Web site or they can be mailed to the participant.
• Participants must be an amputee and at least 18 years of age.
• Participants must understand that the online support group is meant to be an informational and educational support program for amputees.

To learn more about the ACA Online Support Group, you can access the following link: www.amputee-coalition.org/npn_osg.html or give Susan Tipton a call at 800/267-5669, ext. 8132, stipton@amputee-coalition.org

Advocacy and Self-Help

Strategies for Real and Meaningful Inclusion in Social Events for Disabled Persons —

Following is a short list of strategies that make inclusion meaningful for events that are attended by disabled individuals.

·         ACCEPTANCE IS GENUINE. Be friendly and welcoming. Talk to me. Answer my questions. Help me if I ask for help. Be respectful. Listen. Help me feel welcome here, among friends.

·         PHYSICAL NEEDS ARE MET. I may need transportation to the meeting. I must have physical access to the building, the meeting room and the bathroom. I want to be able to sit with everyone and be included in the group. Remember that my physical needs are unique. My personal care aide is welcome.

·         COMMUNICATION SUCCEEDS. Listen when I speak. Allow me the time I need to communicate. Encourage me to ask questions and participate. Provide materials in alternate formats if I need them (audio tapes, graphic illustrations, large print).

·         COMPREHENSION IS ASSISTED. Be a partner. Help me prepare for meetings. Welcome my questions. Don't talk in jargon. Help me participate in the meeting. Repeat motions before they are voted on.

Member Updates

Daphne Burroughs —  For those of you who know Daphne, you are aware of her previous surgeries and transplants. Recently, Daphne experienced rejection of one of her transplanted organs. She was on vacation and had to rent a private jet to fly her back to this area to see her doctors. She was admitted to the hospital and treated. She is out of the hospital and recuperating well at home. Please keep Daphne in your thoughts and prayers.

Hermann Pfrengle — It is with sincere regret that I must inform you of the death of Hermann Pfrengle.  Hermann was a long-time member of ASGNVA and attended many Watermelon Socials and other events.  He was a bilateral above-knee amputee and did not attend meetings but maintained communications with ASGNVA through the newsletters and e-mails.  

          All member updates are welcome.  Please call or e-mail with your updates, news and/or information so that it can be included here (see contact list on page 1).  Thanks!

Scheduled Events

Office on Disability Pre-Conference: Minding the Gap: Access, Availability and Services, Preconference event at the 2006 National Leadership Summit on Eliminating Racial and Ethnic Disparities in Health — Invited speakers include experts from professional and community organizations, academia, and government agencies that will be able to discuss the barriers that women of color experience when seeking medical diagnoses, management, and quality treatment.  Date: 01/08/06 1:00 p.m. – 6:00 p.m., Grand Hyatt Washington, Washington, DC. Sponsored by the Office on Disability, HHS. For more information, contact Susan Russell at srussell@osophs.dhhs.gov or Janelle George at jolleen.george@hhs.gov.

2006 Disability Policy Seminar — Save the date:  February 6-8, 2006!  The Disability Policy Collaboration, a joint initiative of The ARC and United Cerebral Palsy, will be hosting their 2006 Disability Policy Seminar at the Capital Hilton Hotel in Washington, DC, on Monday, Tuesday and Wednesday, February 6, 7 and 8, 2006.

          Seminar participants will learn what is really happening in national politics, particularly on policies that impact people with disabilities. The first two days will feature discussions that will provide answers to the following tough questions:

·         Is Medicaid on the budgetary chopping block?

·         Will Social Security reform and privatization be on the table for Congress?

·         What is going on with the new Medicare prescription drug coverage?

·         What programs/services will be funded (or de-funded) in the fiscal year 2007 budget?

Other possible issues to be discussed include Tax Reform, Employment, Disability Rights, Housing, and Transportation.

          The third day of the seminar will present participants with an opportunity to spend a day on Capitol Hill to educate Members of Congress and their staff on these and other issues that are important to the disability community.

          For more information, e-mail Richard Price, Director of Communications and Grassroots Advocacy, at price@thedpc.org or call The ARC at (202) 783-2229 or UCP at (800) 872-5827.

ASGNVA Monthly Meeting — ASGNVA is working hard to schedule speakers and presentations for the meetings in 2006. Do you have a subject or topic for a meeting? Please contact Beth Harris at 540-439-3656 or asgnva@earthlink.net. All suggestions are welcome.

The next monthly meeting is January 3, 2006.  Let’s ring in the New Year with a resolution to participate in your Amputee Support Group.

Calendar of Events —

Focus on Support Groups: Dealing With Depression During the Holiday Season[1]
by Omal Bani Saberi, LCSW, CCHT

This article is about depression during the holiday season, specifically for new amputees. It includes a brief description of depression and a practical guide to help you through the holiday season and the New Year.

          All of us experience some type of depression during the holiday season for a variety of reasons, including weather & seasonal changes, the pressures of family traditions, shopping, deciding which gifts to buy, as well as living up to our own expectations and those of others. So naturally, in the midst of what is supposed to be a joyous season, you may find yourself feeling down, especially those of us with disabilities. For the new amputee, this may even be a harder struggle. What are these feelings and how you can work through them and ward them off?

Signs & Symptoms of Depression:

• Loss of appetite, changes in eating patterns
• Lack of energy
• Sleeplessness or sleeping more than usual
• Poor concentration
• Diminished interest in or enjoyment of activities
• Loss of interest in sex
• Social withdrawal
• Feelings of hopelessness, worthlessness, or inappropriate guilt
• Emotions that are flat– expressed robotically rather than with feeling

Grief Process

When a part of our body is gone; we experience a grieving process much like a death. Death is permanent and time eases the pain without losing the memories; however, with the loss of a body part, it is a moment-to-moment reminder and this can be difficult.

          The cycle of grief does not flow easily. Emotional recovery is the same as physical recovery, based on your own timetable and other factors. These include: age, gender, circumstances of your limb loss (accident, disease, birth), how you coped with problems in your life prior to your limb loss, support or lack of support from family or friends, cultural values and norms and socioeconomic factors. The cycles may include:

Denial - You are in shock that a part of you is gone and may experience disbelief and numbness. In the early stages of survival, belief and disbelief are often experienced at the same time.

Anger - The direction of your anger will vary depending upon your situation and your personality. You may become angry with God, wondering how God would allow this to happen. You may become angry at the injustice and unfairness of the world - after all, the force that is supposed to keep things fair hasn’t done its job! You may experience anger towards other people and even yourself. It is vital for anger to be vented. Scream, hit a pillow, tear up a directory, hit a punching bag, or use whatever means you can to release your feelings without hurting yourself or others. Memories of the past before your amputation may be constant. Clothes may not look the same on your body now and this may make you angry and sad. You may have a whole mixture of intense feelings now.

Acceptance - Acceptance will not come easily but it will come gradually. Whether you are a new amputee or one with many years of adjustment, it is hard to come to full acceptance.

How to Survive Holiday Depression

Physically:

1.      Get your rest. Each day get out of bed, get dressed, and if possible, go out of the house.

2.      Make sure you eat well - not too many sweets. Foods with sugar will give you quick bursts of energy then quickly let you down, taking you deeper into depression.

3.      Get involved in physical and recreational activities that do not cause you pain. Exercise and gentle movement will release endorphins to help decrease depression.

4.      Decrease alcoholic beverage intake. Alcohol is a depressant. Eliminate other drugs that you use to self- medicate. If using prescription drugs, make sure you take them when prescribed.

5.      Accentuate your best features; don’t focus just on the loss. For example, if you have wonderful skin, eyes, smile, figure and personality, this is the time to value your assets.

Emotionally:

1.      You are not alone.

2.      You are not to blame. It is important that you feel the anger, because, if you don’t, it will lead to depression.

3.      Write letters and don’t mail them; journal your feelings.

4.      Increase contact with supportive family and friends.

5.      Assert yourself and communicate clearly. Tell those around you what you need and don’t need. For example, you may need to expend less energy this year, conserve your energy – so extensive shopping for gifts may have to be put aside. Instead send people cards, and try not to feel guilty. Spend more quality time with friends or family, go to a movie or rent a video, especially if the weather is harsh.

6.      Tell your loved ones you are experiencing grief and talk about your loss together. This gives your loved ones the chance to express their feelings, since they, too, have to adjust to your loss. So don’t skirt around the issue, walk on eggshells or ignore the problem. Be honest and talk it out. This will give you and yours a greater chance to heal and adjust.

7.      Remember people want to help and often they don’t know what to do to support you. So ask, ask, ask! You can remain independent - but let go of the controls for now. Allow others to give to you, so you can replenish your energy.

8.      Contact an ACA Support Group. If there isn’t one in your area, contact the ACA offices toll-free at 1-888/AMP- KNOW for information and help.

9.      Laughter is a healer of depression so add humor, make light of something that is serious, and laugh at yourself.

10.  Get professional help if the depression becomes over whelming and no small changes are occurring. Everyone needs help at some point in his or her lives. Be a thriving statistic. You are worth it. If finances are a problem, call your local county mental health office or the ACA office (1-888/AMP- KNOW) for information on financial resources available.

11.  Most importantly, know that these feelings will lessen over time; however, for now, get support!

Mentally:

1.      Commit yourself to work with the medical staff, physicians, nurses, occupational and physical therapists, prosthetists, even when you don’t want to.

2.      Do not make big decisions such as beginning or ending a relationship buying or selling a house or car when you are depressed. You may regret this later.

3.      Go to a psychiatrist for evaluation and medication if necessary.

4.      Seek alternative medicine, massage, acupressure, acupuncture, and hypnotherapy for pain management, phantom pain, sleeplessness, anxiety and depression.

5.      Replace negative self-talk about your body and life with positive cognitive messages.

Spiritually:

1.      Forgive yourself; don’t judge. Dr. Bloomfield, co-author of How to Heal Depression states, “The primary reason to forgive is for your peace of mind and the quality of all your future relationships. That’s what we do when we forgive - let go of the imaginary (but painful) control of the way we think things should be, and we untie ourselves from the burden of judging the way they are.”

2.      Learn to redefine yourself.

(a)   Forgiveness. Keep your dreams and reshape and create a new definition of success.

(b)   Receiving help - Accepting support from loved ones while remaining independent.

(c)   Making new rituals/ memories thus creating hope for the present and future. A part of you is only physically gone or altered; the core of you is still the same as before. Make goals and objectives for the New Year and start small.

3.      If religion or spirituality is important in your life, spend more time and become more in touch with those things that are important to you.

Summary - Amputation is an enormous loss and learning to adjust is a process that takes time - so be gentle with yourself. Try not to isolate or withdraw from people; use your experiences to build new memories and start new traditions to reach your goals. Sure, there will be adjustments for your disability along the road to success - but it is still your path. Who you are has not changed. Always remember, you are much more than your physical experience.

Resources:

·         National Mental Health Information Center, 1020 Prince Street, Alexandria, VA 23314-2971, (800) 969-6642

·         How To Heal Depression, Harold H. Bloomfield, M.D.& Peter McWilliams

·         Contact your local County Mental Health Association.

About the Author - Omal Bani Saberi is an above knee bilateral amputee. She is a Licensed Clinical Social Worker, (LCSW) and a Certified Clinical Hypnotherapist (CCHT), with Masters Degrees in Social Work and Counseling Psychology. Currently, Ms. Saberi is in private practice, contracting her services to the State of California providing counseling and psychotherapy at Corcoran State Prison.

Living With a Limb Difference:  8 Keys to Success ¹
by Anne F. Street, MSPT, Prosthetist, CPI, STS

I have worked as a physical therapist in an inpatient rehabilitation hospital for 14 years, and I specialize in the treatment of patients with limb differences. During this period, I have had the opportunity to talk to numerous amputees and to ask them what they learned after surgery that had a positive impact on their life. The following tips summarize what I have learned from these individuals and what I now teach my patients. They are important keys to living successfully as an amputee.

1. Talk to the members of your healthcare team

Keep your physician, nurse practitioner, physician’s assistant, etc. informed of any changes in your activities, diet, pain, residual limb or emotions. What may seem insignificant to you may be important to them, especially during the period shortly after your surgery. If the members of your healthcare team catch a problem early, they may be able to solve it with minimal pain and expense.

2. Establish attainable goals

Don’t expect to be “leaping small buildings in a single bound” the first week after your surgery. With the help of your rehabilitation team, set smaller, achievable goals on a day-to-day basis that will help you eventually achieve larger, more complex goals on a week-to-week basis. Early on, for example, you might work on safely performing sit-to-stand transfers as a component of preparing to walk to and from the bathroom independently. Then, as your strength and abilities improve, you can change your goals accordingly. Discuss these goals with the members of your healthcare team; they should be able to tell you what is reasonable.

3. Develop new habits

Try to establish new routines for the care of your residual limb and prosthesis. It takes two to three weeks for an activity to become ingrained as a habit. Performing the same activities in the same way at the same time of day should help you develop patterns of activity that you will continue to perform regularly with minimal thought and effort. At the same time, these habits could have a profound impact on your life. For example, performing skin checks before donning and after doffing your shrinker and/or prosthesis can help prevent skin breakdown problems. This can help you minimize skin injuries that could cause you severe pain, prevent you from using your prosthesis, limit your mobility, and even lead to life-threatening infections. If you have diabetes, preventing such injury is especially important.

4. Do your exercises!

The benefits of an established exercise program are endless and include improved circulation, endurance, strength, weight control, flexibility, balance, emotional outlook, independence, and overall quality of life. Take the time to learn and perform your exercise program. Then, talk to your therapists to find a way to maintain your program after you are discharged from formal therapy. (Caution: Always check with your physician before beginning a new fitness regimen.)

5. Be careful about your position

If you maintain the same position, such as sitting in a chair, for an extended period of time, your body will start to conform to that position. Your muscles and tendons will shorten, and pretty soon you won’t be able to straighten them. This situation is called a contracture.

          To prevent or limit contracture formation, it is important to periodically stretch in the opposite direction of a maintained position. Lying on your stomach for 15 to 20 minutes a day, for example, can help you minimize hip flexion contractures caused by excessive sitting.

6. Practice energy conservation

Taking a break in the middle of the day can allow you to be more productive later in the afternoon. If you separate a larger project into two or three smaller activities with rest periods in between, you will still get the job done but will not be exhausted when you finish it. If you have long distances to traverse, you might use a manual or power wheelchair to help cover the distance so that you will have the energy to enjoy dinner when you get there.

          Look at your daily activities, and see if they can be modified to make them easier and you more efficient. Even though you use leg prostheses, for example, you might do some things around the house in a wheelchair so that you will have the energy to wear your prostheses when you go outside. If you have bilateral lower-limb amputations, you might make your bed while sitting on it without your prostheses so that you don’t have to walk around it with your prostheses on. This can help you conserve your energy for later in the day.

7. Realize that you are not alone

Become involved in a local peer support group. Don’t reinvent the wheel; instead, learn how other amputees have solved problems and are dealing with issues. Support groups can provide information on community resources for transportation, funding, prostheses, equipment, home renovations, etc. Many groups are open to spouses, friends and significant others. Talk to your family and friends about your concerns and goals. They won’t know what’s going on unless you tell them and involve them.

8. If you smoke, quit!

The vaso-constrictive effects of a single cigarette can last for up to two hours after you have finished smoking it. This reduces blood flow and the delivery of oxygen to your extremities and healing tissues. This effect is magnified if you also have diabetes or vascular disease. Talk with your physician about safe, effective methods to help you kick the habit.

About the Author - Anne F. Street, MSPT, Prosthetist, CPI, STS, received her Bachelor’s Degree in Sociology and Education and her Master’s Degree in Physical Therapy. She is also a certified Pilates instructor, has a certification as a strength training specialist, and recently completed the California State University at Dominguez Hills’ Prosthetics Program. She is practicing in Melbourne, Florida.

Recognizing And Treating Depression In Primary Care Can Prevent Unnecessary Hospitalizations And Save Money

More than 25 percent of primary care patients have a diagnosable mental health disorder (most often anxiety or depression). In many cases, these mental health conditions are not detected or treated. The costs associated with untreated mental disorders in primary care are considerable. For example, the annual health care cost for untreated patients with depression is nearly twice that for patients who do not have depression. Proper diagnosis of these problems can prevent higher health care costs, such as the costs associated with an avoidable hospitalization, according to a study supported by the Agency for Healthcare Research and Quality (HS09397).

          The researchers found that patients of primary care physicians (PCPs) who diagnosed the greatest number of mental health disorders among their patients had 9 percent lower overall health care expenditures. Inpatient expenditures were 20 percent lower for these patients, compared with patients of PCPs who diagnosed the smallest number of such disorders.

          These findings suggest that detection and treatment of mental health disorders in primary care patients could have a substantial impact on reducing hospital costs. The cost benefit of improved diagnosis may be due to less time and resources spent on medical workup of unexplained medical symptoms such as fatigue, headaches, and stomach aches, which often mask undiagnosed depression, as well as more efficient treatment of mental health disorders.

          PCPs who diagnose more mental health disorders in their patients may recognize when unexplained medical symptoms are the result of emotional distress or a mental health problem. They also may be less likely to order unnecessary diagnostic tests, refer patients to specialists, or admit patients to the hospital. For example, these physicians are more apt to recognize the young patient with chest pain and a normal electrocardiogram as having panic disorder with no need to be hospitalized, explains principal investigator Peter Franks, M.D. Dr. Franks and his colleagues at the University of Rochester School of Medicine used the claims database of a large Rochester managed care organization to correlate diagnosis of depression among adults assigned to a PCP (457 family physicians and internists) with avoidable hospitalizations for a variety of conditions during 1995.

From "Do physicians who diagnose more mental health disorders generate lower health care costs?" by Thomas L. Campbell, M.D., Dr. Franks, Kevin Fiscella, M.D., et. al., April 2000 Journal of Family Practice 49(4), pp. 305-310.

ATTEND YOUR SUPPORT GROUP MEETING!

7:30-9:00 p.m., JANUARY MEETING

Presentation by Hoveround Corporation

Contact 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

JANUARY 3 MEETING:

Presentation by                                                                        NEXT MEETING IS JANUARY 3, 2006!

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