VOLUME 3 NO. 1
February, 2002
Amputee Coalition
of America - National Limb Loss Information Center
900 E. Hill Avenue, Suite 205, Knoxville, TN 37915 · 888-AMP-KNOW
(267-5669)
Richard Mooney, editor; e-mail: matlmgr@jps.net
- Becky Bruce, coordinator; e-mail: rbruce@amputee-coalition.org
. . . Dedicated to Enhancing Support Group Leadership Skills
by Kathy Spozio
ACA's Peer visitation training program is getting a face-lift. During the past year a dedicated committee has been hard at task, reviewing and rewriting the program to better suit the needs of the new amputee. The changes will also serve to make things better for trainers, peer visitors, and regional representatives, according to Pat Isenberg, ACA Program Manager for Training and Outreach.
The National Peer Network's (NPN) familiar program turned over its new leaf on January 31 in Knoxville, TN, when its revised format was piloted for the first time for members of the local Amputees Coming Together (ACT) support group. A second pilot, in Roanoke Virginia in February, for the Roanoke Amputee Network, will be the last opportunity for edits before new training manuals go to press. Both trainers and peer visitors will receive spiral bound handbooks with a fresh look. The two-part format, divided into training and resource sections, will address, for the first time, different types of visitations, i.e., at the hospital, in home, and by telephone. Other notable changes will be the incorporation of a pre- and post-workshop quiz, role-play in the early part of the training experience, and a new section on cultural sensitivity.
Because the format has been revised, it will be necessary to retrain individuals who are currently on the trainer roles, along with anyone not previously trained. This initial training will be offered in Anaheim at the annual conference in July and potential trainers will be invited to participate. Perhaps one of the biggest changes that trainers and trainees alike will notice is the evaluation process. According to Isenberg, the new program provides for the trainer to evaluate the trainee at the end of the day-long session, to determine if she or he is qualified to be a trainer an/or visitor. Participation alone, will not guarantee certification.
ACA realizes that there's a lot to cover in a short period of time and hopes to equip both trainers and visitors with the information necessary to focus on developing the necessary communication skills in this revised approach. But, as Pat so aptly explained, there's a certain skill level that only comes with practice.
For more information concerning the NPN or the new visitation training program, contact Pat Isenberg or Becky Bruce at 888-267-5669.
2002 Peer Visitation Training Schedule
. . . . And All That Jazz
by Kathy Spozio
I'm convinced there is never one single method of solving problems or learning skills. That's why I'd like to tell you about one more approach to refining the vital peer visitation skill of demonstrating empathy. In Friend to Friend: How you can help a friend through a problem, I read about a concept called "crawling into the situation," an expression that authors J. David Stone and Larry Keefauver use to refer to empathy . . . and I really like it!
Now, we all know something about empathy . . . it's a skill we try to develop in order to become effective support group leaders and peer visitors, and in the case of this reference book, good friends. I think its safe to deduce that the ability to "empathize" goes hand in hand with friendship in a multitude of ways. Simply put, empathy is learning to listen in such a way as to understand how the person is feeling. Trying to think, act, and feel in their interest. This skill then is important to any relationship, especially that of peer visitor and new amputee.
Often times we may find ourselves feeling frustrated when we are faced with another's need for help, whether that be a friend who calls or stops by to unwind, or something more formal like a peer visit. Can you recall hearing yourself say things like "Don't worry," "It will all come out in the wash," "Don't cry", or "Things will look better tomorrow?" Well, if you can you're not alone. All of these phrases leave a lot of room for improving our empathetic listening and response.
Now let's get back to "crawling into the situation." Have you ever thought of being a good listener as analogous to listening to Jazz? The authors of Friend to Friend suggest that this is a good frame in which to understand and become proficient at empathy. And, since Santa brought me a new Bose, I think I'm really starting to get the picture, or is it the "wave?"
"You simply cannot hear jazz. It is much more than hearing the horns, woodwinds and so on. To really listen to jazz, you must lie down on the couch and close your eyes. You feel the beat. You imagine what might be going on inside those players. You get wrapped up in the music and let it take you away," write authors Stone and Keefhauver. This ability to listen via "crawling into" can be compared to the way we, as peer visitors, need to listen to our visitees. We need to look for the melody behind the improvisation; in other words, look below the surface of the person we're visiting and find our way inside to the deeper feelings. Remember how it was when you were a new amputee . . . go back to that place. Think about how musicians performing jazz play off of each other and apply this to how you might respond to a question or lead into a new topic. . . you and the new amputee trading lyrics and sharing musical ideas back and forth. To really appreciate jazz, one has to listen very carefully . . . to really understand what new amputees are feeling we need to listen very carefully too . . . we must hear all the variations in the tune that is being played for our ears.
Now, I'm not suggesting that you lie down on the bed or sofa on your next peer visit, but I do believe that thinking about "crawling into the situation," as you would crawl into a jazz session, might help simplify the essence of empathy . . . we crawl into another's thoughts, feelings and actions. So, next time you get a call for a peer visit, take a minute to turn up the bass, feel and listen to a little Billy Holiday, Ray Charles or Louie Armstrong . . . and set the stage for empathetic, and maybe even easy, listening!
Q & A Forum
Dear Kathy,
What do you do when the new amputee you are visiting is reluctant to talk? I've tried simply going ahead with my "spiel" but, frankly, my monologue is not very satisfying.
Helen
--------
Dear Helen,
Being hesitant or reluctant to talk isn't the worst thing that can happen during a peer visit. I realize its against human nature to be comfortable with silence, but this is the time to start practicing! I like to think of silence as another form of communication, even if that sounds contradictory...we can still communicate in silence. It isn't necessary to fill the entire visit with words; often, just sitting with someone is helpful. And, allowing the new amputee to be where they "are" is always the right thing to do.
If you've made a few attempts at small talk and after a period of time, lets say about 10 to 15 minutes, there hasn't been any attempt to communicate verbally on the part of the amputee, its okay to say something like, "It seems like you would rather not talk right now . . . that's okay . . . sometimes there aren't words to express what we're feeling. I've felt that way sometimes myself." With this type of response we are acknowledging feelings, affirming their choice, and empathizing.
Give it a few more minutes, and if there is still no response, try something like "Would you like me to just sit quietly with you for a while longer, or would you prefer that I come back another time?" When you give the person you're visiting the opportunity to choose if and who talks, and if you offer to stay or leave, you are allowing them to take back some control in their life.
Remember, each person reacts differently to amputation, and understanding this before you begin the visit will be helpful.
Kathy
(If you have some technique that has worked for you in this or a similar situation, please let me know so I can share it in the next issue.)
An important part of the "Peer Visitation Corner" is the Q&A Forum and comments from readers about their peer visitation experiences. Since the Communicator is your newsletter, please contribute by sending your questions and comments directly to Kathy Spozio at mermaid@usachoice.net .
by Dick Mooney
The Case for Setting Goals and Making Action Plans
Goal Setting - Among the many unusual creatures Alice met during her adventures in Wonderland was a Cheshire Cat sitting on a bough of a tree. Since Alice was thoroughly lost, she asked the grinning creature, "Would you tell me, please, which way I ought to go from here?"
"That depends a good deal on where you want to get to," replied the Cat.
"I don't much care where," said Alice
"Then it doesn't matter which way you go," said the Cat, grinning even more widely.
Henry Kissinger put it in similar terms when he addressed the Democratic National Convention in 1953 and said, "If you don't know where you are going, any road will take you there."
As the leader of a support group you are responsible for assuring that your group's mission of providing support, information, and encouragement to its members is successfully accomplished. To do this, you must always know where you want the group to go and how it's going to get there. Absent this, the group's program will drift like a rudderless ship in the wind . . . . . and you probably won't like where it ends up.
Establishing goals will not only put you on the right road to your desired destination, but if done collaboratively, the process can be a useful team building tool. When the group, be it your board or officers or the general membership, participates with you in setting goals they will feel more a part of the process and will tend to "own" the goals themselves. They will be inclined to understand better what is required to be done and are likely to adopt a better sense of direction, purpose, and commitment.
Finally, it must be understood that goals emphasize results, not merely efforts. Trying hard isn't good enough. What you want is action and the desired result. The process is frequently referred to as "Managing By Objectives and Results," never "Managing By Objectives and Efforts." One company describes it as not managing the way elementary school teachers do, by giving credit for good attendance and citizenship but, rather, managing as college professors do, by insisting that people learn the material and proving that they have done that by passing the test.
Action Planning - Without planning in detail the steps necessary to achieve objectives, goals are simply statements of good intentions. Action plans "actualize" goals. Goals tell you where you want to go. Action plans tell you what you must do to assure you get there.
Oddly enough, in our personal lives goal setting and action planning are sometimes automatic. They are sometimes things we just do naturally and don't think of them as structured processes. For example, would any of us think of taking a major trip without deciding on a destination and taking the steps necessary to assure we get there and back? If we decide to go to Chicago, that's our goal. But before we leave we have to decide when we're going to leave, when we want to get there, when we want to return. We also need to decide the method of transportation we'll use. Can we afford the transportation cost? Do we need tickets? If we're going to drive, do we need to have the car serviced? Where will we stay while there? What are we going to pack to take with us? . . . . . and so on. These are parts of our action plan. In real life, we just do all this intuitively.
Why, then, don't we just as naturally plan the activities of the organizations we're responsible for managing--in this case our support groups? Too often, we decide we need a newsletter, for example, and rush off willy nilly to start one without thinking through the process. I don't really understand why this happens, but I know it does. Perhaps this article will help us to think about our leadership responsibilities to set goals and develop action plans in a clearer light.
How To Develop Goals
1. Goals should be developed collaboratively - Unless you are a "sole proprietor," you should involve your whole leadership team in developing goals. You should also involve any others who will be involved in implementing the goals. Collaboration helps everyone buy into the goals and it is also an excellent way to get diverse ideas.
2. The development of goals always starts with a comparison of what "is" with what "should be." When these two are not in harmony, action is needed to develop and implement new services, and/or to improve existing services that may be ailing. Before you are ready to define the goal and reduce it to writing a lot of discussion is needed to clarify just what new action or corrective action should be taken. Of course, this should also be a collaborative process and should result in a mutual understanding of what needs to be done. Only then are you ready to proceed with developing a goal statement for "publication."
In setting goals, care should be taken to assure that the desired result is realistically attainable and measurable.
Lee Nattress, in his leadership workshop materials, advocates answering "the 5 Ws and an H." This model includes elements of action planning also.
3. Every goal should start by stating the date on which the goal is to be achieved. e.g., "By October 20, 2002, . . . . "
4. Next, there must be an action verb--something you can see happening. If you can't see it you have the right to believe it doesn't exist. "Define," "decide," "implement," and "complete" are all action verbs. "Consider," "review," and "study" are not. "Study" is a process; "complete a study" is a measurable result.
5. Next, state what is to be done in a few words, e.g., "Implement a new system to keep records on members."
6. Finally, whatever the goal is--to implement a new system to keep records, for instance--you'll realize that you have a certain kind of system in mind. Not just any old system will do, For this reason, a sufficient number of qualitative phrases should be added so you will be assured that the result does what is needed. As an example, ". . . . that is automated, and provides for flexible information sorting, needed management reporting, newsletter and other media addressing, supports the needs of the visitation program . . . . . "
7. When there will be costs in attaining the goal, you will want to define the maximum the group is willing to pay, e.g., ". . . . for a total cost not to exceed $___."
Here is an example of a complete goal statement using the record keeping system example:
"By October 20, 2002, implement a new system to keep records on members that is automated, and provides for flexible information sorting, needed management reporting, newsletter and other media addressing, supports the needs of the visitation program, and is accomplished for a total cost not to exceed $___."
How To Make Action Plans
Action planning is largely a matter of identifying all the steps that have to be taken before the final result can be achieved. Again, the collaborative process is ideal for this. In a "buzz session" setting, one is likely to identify steps that another has not thought of.
Some action steps can be done in parallel but others can only be done serially; i.e., the result of one is needed before the next can begin. Thus, the order that action steps are arranged is very important, but don't get hung up on timing while you are still trying to identify the steps. In the days before computers, I used to write each action step on a 3" X 5" card as fast as my staff and I could think of them. Then, when we were reasonably sure we had all the important ones, we would stand around a conference table and move the cards around until we had them in a logical order. Only then would I have the list transcribed to paper for further definition.
Once the list of action items is complete and in the proper order, you must add completion times for the each step and the names of those responsible for completing each step. The following example is taken from the article about SWOT Analysis in the August, 2001, issue of the Communicator.
( The goal was "By December 31, implement an automated record keeping system that can be used to address mail, manage the peer visitation program, support dues and donations collection, and provide information needed by the Board.")
Make a priced list of what is needed (John - by 8-1-01)
Establish a fund raising goal (John - by 8-1-01)
Make a list of potential donors (Louise - by 8-1-01)
Prepare a "pitch" to prospective donors (Louise - by 8-1-01)
Contact prospective donors (John, Louise, Becky, Ed - begin 8-15-01)
Complete raising funds - (John, Louise, Becky, Ed - 11-15-01)
Purchase and install necessary hardware and software (John - by 12-1-01)
Install and test database management system (John - by 12-15-01)
Once your goals and action plans are complete you have to work them and make sure the others involved do also. Don't be like a woman I once knew who thought she could lose weight by purchasing diet books. These kinds of process and service improvement activities don't usually generate much inertia. Instead, progress tends to grind to a halt as soon as the boss's back is turned. For this reason, the leader must be relentless in assuring that everyone does his or her assigned part and that deadlines are met. Otherwise, you have gone through this whole process for naught. It's called wasting time.
Finally, realize that goals and action plans aren't cast in concrete. Times change, needs change, and those changes may have an effect on the goal attainment process. If a goal proves to be badly conceived, rework it. When you get into the process, if you decide that the action steps weren't well designed, redesign them. Times are dynamic. Goals and action plans need to be dynamic also.For Your Members
Phantom Pain - An Update
Whenever two or more amputees gather, the conversation sooner or later turns to the subject of phantom pain and what to do about it. Although many scientists have studied phantom pain and much has been written about it, because it is a complicated phenomenon that occurs in the brain and not in the residual limb, scientists have failed to come up with a therapy that successfully eliminates it. What remains are a wide variety of therapies that may or may not help any given individual.
Allan Larson, a below-elbow amputee who is affiliated with the Saskatoon Amputee Support Group, Inc. in Saskatchewan, Canada, has assembled the following excellent list of these therapies. You may want to duplicate this article to distribute to your members.
Acupuncture
Acupuncture is a healing art that has been practiced in China for several thousand years to treat a variety of ailments, including chronic pain. Acupuncture involves the insertion of tiny needles into the skin at specific sites. The needle is then twirled for a few minutes or a low electrical current is applied. It is not fully understood how acupuncture works - the Chinese healing art stresses the energy flow of the Ch'i, or life force, while western medicine suggests it stimulates the production of the body's natural painkillers called endorphins.
Anesthetics: Preoperative: Epidural Blockade
When amputation surgery is performed, whether caused by trauma or disease, the amputee is often in pain before the surgery commences. It is thought that this pain imprints on the brain and creates a "pain path" which then causes phantom limb pain after the limb is removed. By using an epidural, an injection of anesthetic to the spine, usually for a period of 72 hours prior to the surgery, the message of pain is blocked from reaching the brain and creating a "pain path." It has been reported that people who have an epidural blockade prior to surgery experience less pain during the postoperative period, as well as a reduction in the frequency and severity of phantom limb pain. It is also thought that the epidural reduces pain by cutting off the pain messages associated with the surgery, which still register in the brain even though the patient is unconscious.
Postoperative: Local Anesthetic (examples: Lidocaine, Marcaine, Novocaine, Pontocaine, Xylocaine)
These medications act on nerve cells by making them incapable of transmitting pain messages for a short period of time. They may be given as spinal (a small needle into the spinal column, in the lower back), epidural (a small needle and catheter into the spinal column, in the lower or mid-back), by local injection or a wide variety of nerve blocks. These may be used to relieve trigger points and reduce stump pain.
Biofeedback
Advocates of biofeedback feel that phantom pain may happen because of anxiety, which may increase muscle tension and contribute to the pain cycle. "Hyperactive muscles" cause irritation in the cut ends of the nerves in the residual limb. Electrodes are attached to the residual limb which detect when the muscle is tensed and trigger a flashing light or buzzer to provide feedback. Once the amputee has become aware of the muscle tension they learn to relax the muscle. When an appropriate decrease in muscle tension is reached the feedback stops. The focus of this treatment is to teach the muscle(s) how to relax, thereby relieving the pain.
Chiropractic
Some amputees may find relief through chiropractic - which means "treatment by hand. "Chiropractic does not involve drugs or surgery, but instead concentrates on the spine in relation to the total body. Doctors of chiropractic, or chiropractors, specialize in the understanding and treatment of the different parts of the spine: bone (vertebrae), muscles and nerves. When a vertebral joint is not working properly it can create an imbalance which disturbs the nervous system. This can lead to excess strain being placed on other joints, resulting in some form of pain. Through manual adjustment, or manipulation of the spine, chiropractic works to correct misalignments of the spine thus alleviating pain.
Cold
Applying cold to the residual limb may help alleviate some of the discomfort associated with phantom limb pain or muscle spasms. Refreshing coolness can be administered through cold compresses, ice packs or cool baths. Amputees may also wish to try a cooling cream or gel. One newer product available is Biofreeze, which is an analgesic cryotherapy gel made from the extract of a South American holly shrub. Biofreeze creates a cooling sensation within the skin that can last several hours. Another gel, Glenalgesic Blue, is a topical pain fighter for the prompt and temporary relief of muscular aches and pains, containing menthol, alcohol and camphor. [See also Heat.]
Cranial Sacral Therapy
This type of therapy, involving the study of bone and joint misalignment related to the head, has been practiced by many different cultures for thousands of years. Therapeutic touch is applied to the head, and meditation and visualization techniques may also be used in conjunction with cranial sacral therapy. A therapist treating phantom pain may "massage" the missing limb, as well as encourage visualization of the lost limb in an effort to help amputees release any sense of grief, loss or anger towards the missing limb(s).
Desensitization
The nerves in the stump of the amputated limb can be very sensitive, especially directly following the amputation. Not only does desensitization reduce nerve sensitivity, it can also reduce pain and discomfort overall. Rubbing the stump with a piece of terry cloth, gently manipulating the stump manually, tapping the stump, or using a vibrator can all help to desensitize the nerves, alleviating sensation and pain. [See also Massage.]
Dietary and Herbal Supplements
Some amputees have found certain dietary supplements or homeopathic food products help reduce phantom limb pain. Examples of dietary supplements amputees have tried include: potassium;calcium; magnesium, and injections of Vitamin B12. Certain herbal products have also been found useful by some amputees including juniper berries (interestingly called "ghost-berry" by Native Americans). Antioxidants such as Pycnogenol (a pine bark extract sold in Canada as a food product) and Grape Seed Extract are extremely concentrated bioflavonoids, which until 1936 were known as Vitamin P. Antioxidants attack free radicals, which are unstable atoms inside our bodies that attack all body tissues, degrade collagen and reprogram DNA. Free radicals are believed to be the underlying cause in many diseases. Antioxidants are found in high concentrations in grape seeds and pine bark, and in lesser amounts in grape skins, cranberries, lemon-tree bark and hazelnut tree leaves. Antioxidants are available in liquid and pill form.
*Amputees should always consult their doctor before taking any supplements or herbs, as these are not harmless, but can have powerful side effects. They may also interfere or conflict with other medications being taken at the same time.
Electrical Stimulation
Another theory behind phantom limb pain suggests that it occurs because the nerves in the residual limb lack the stimulus once provided by the missing limb. One electrical treatment, transcutaneous electrical nerve stimulation (TENS), uses low current at a low-frequency oscillation to stimulate the nerves and provide pain relief. The amputee feels a gentle tingling without increased muscle tension. Depending on the severity of pain, the small-battery operated device can be used for 20 minutes to a few hours of stimulation, several times daily, and the amputee can be taught how and when to apply treatment. Because TENS can cause arrhythmia, it should not be used by people with advanced heart disease or a pacemaker. Your doctor will advise if this is suitable for you.
Exercise
Exercise increases circulation and stimulates the production of endorphins (chemicals naturally produced in the brain that kill pain). Many amputees find that moderate and frequent exercise can help to reduce phantom pain. Flexing and relaxing the muscles on the residual limb also helps some amputees.
Farabloc
Farabloc is a fabric which contains extremely thin steel threads but looks and feels like linen. The makers state that Farabloc has a shielding effect from ions and magnetic influences, which protects damaged nerve endings. It stimulates blood circulation and produces a pleasant feeling of warmth. It can be cut and sewn, washed and ironed like any other fabric, and is available in blanket forms of various sizes. People may have socks, sheaths, or custom residual limb covers made from Farabloc or the material may be incorporated directly into a prosthetic socket.
Heat
Applying soothing warmth has been reported to help deal with occasional bouts of phantom limb pain. Warm baths, a heating pack, a Magic Bag, or wrapping the stump in warm, soft fabric to increase circulation are all examples of how heat can be used. There are also rubs and gels which generate heat, such as Rub A535 or Tiger Balm. More advanced forms of heat therapy can be used under the guidance of a trained professional. Some amputees alternate between applying heat and cold. [See also Cold.]
Keeping a Journal
Some amputees write down dates and times as well as other factors that may be present when they experience phantom limb pain, such as stress. A record kept over time may indicate factors that influence or trigger the occurrence, frequency or severity of an attack of phantom limb pain in the same way that migraine sufferers have found that certain foods trigger their migraines.
Magnetic Therapy
Magnets have been used for thousands of years to treat many conditions, including recently phantom limb pain. Magnetic therapy involves applying a magnetic field to the body to relieve pain and speed up the healing process. The application of electromagnetic fields have been shown to affect cell permeability and improve oxygen delivery to the cells, which can lead to better absorption of nutrients, improved circulation, and clearance of waste products. Magnets may also reduce inflammation and pain, and promote healing. The magnets are usually incorporated into bracelets, belts, or fabric straps, and are available in differing strengths and sizes. These products are available from several companies such as Nikken and Bioflow. (It is recommended that you consult your doctor before trying magnetic therapy to ensure it is a good choice for you.)
Massage
Massaging your limb is a good way to increase blood-flow and circulation, which may help to alleviate some discomfort. Massage may also help to reduce swelling and loosen stiff muscles, which can provide some relief from pain.
Medications
Medications are useful in the treatment of pain (especially chronic pain). However, many amputees prefer to try other avenues of relief first. It is important for the amputee to understand all the possible side-effects of over-the-counter and prescription medications, including the implications of long-term use.
Anti-Inflammatory Drugs (examples: acetaminophen [Tylenol], aspirin, ibuprofen [Advil, Motrin]
Acetaminophen, aspirin and ibuprofen are all examples of medication which can reduce mild swelling or soreness, and are useful for mild to moderate pain. They are non-addictive and maybe effective for occasional bouts of phantom pain. One amputee uses Tylenol Arthritis Pain for relief from his phantom limb pain.
Anti-Depressants (examples: Amitriptyline, Elavil, Pamelor, Paxil, Prozac, Zoloft)
Developed to treat depression, many antidepressants have been found to be useful in the treatment of many chronic pain conditions, including phantom limb pain. These drugs work centrally on the brain to either block or increase certain chemicals that help regulate normal brain function.
Anti-Convulsants or Anti-Seizure Medications (examples: Tegratol, Neurontin)
These drugs have also been found useful in the treatment of phantom limb pain. They act directly on the nerves both in the residual limb and in the brain to alter neurotransmission, thus calming nerves in the residual limb which may have become over-active following amputation. These drugs are prescribed in small doses and are gradually increased to a level which promotes relief. It is also very important to decrease the dose gradually before ceasing to take the medication.
Narcotics (examples: Codeine, Demerol, Morphine, Percodan, Percocet)
These drugs mimic the pain killing chemicals released by the brain in response to pain. While they are very effective as temporary solutions for pain after surgery, trauma, or to treat cancer pain, they are highly addictive and in the majority of cases should not be used for a prolonged period. Amputees who have only an occasional severe attack of phantom pain may benefit from a limited course of this type of drug. When these drugs are taken on a regular basis the patient becomes addicted and desensitized to the drugs, requiring more of the drugs while achieving less effective pain relief.
Meditation
Both physical and mental tension can make pain worse. Meditation may help to reduce phantom limb pain by relaxing tense muscles and lowering anxiety levels. The aim of meditation is to produce a state of relaxed but alert awareness, this is sometimes combined with visualization exercises that encourage people to think of pain as something remote and separate from themselves.
Psychotherapy
Some amputees may find individual or group therapy beneficial. Some have even tried hypnosis. Trained professionals can help amputees learn coping skills and can provide psychological and emotional support for dealing with pain.
Shrinker Socks
Bandaging and shrinker socks apply even pressure to the residual limb which may help to reduce or alleviate phantom limb pain.
Wearing Your Artificial Limb
As well as improving circulation, putting on your artificial limb and moving around may also help alleviate phantom limb pain.
Financial Assistance For Prostheses and Other Assistive Devices
We recently received a suggestion from a support group leader for an annual meeting workshop. She wrote, "One of the things we need to expand on is that once the amputee has left the hospital or rehab and is on his way home, we need to provide support for them and the family on how to adjust to the changes they need to make in their environment. Many are low-income families or don't have anyone that can help them to adjust. . . . . Many are confused about getting those services and how to be able to get and afford equipment they will need."
It remains to be seen if such a workshop will be scheduled, but if any groups are interested in obtaining national non-profit information for prosthetic funding, there is an ACA fact sheet available via the Web site in the Information Center. The fact sheet, compiled by MaryJo Walker, is entitled "Financial Assistance For Prostheses and Other Assistive Devices."
It outlines steps to take before the amputees starts to look for sources of assistance. Very comprehensive information is included about the services provided by Medicare, the Veterans Administration, the Civilian Health and Medical Programs of the Uniformed Services (now called TRICARE); and general information is included about state vocational rehabilitation services. state technology assistance programs, protection and advocacy/client assistance programs, private insurance, and medical discount programs. There is also a long list of non-profit organizations and providers of children's services.
It occurred to us that you might want to take a look at this fact sheet and perhaps duplicate it for your resource library or for distribution to your members. You can find it at . . .
http://www.amputee-coalition.org/fact_sheets/assist_orgs.html
ACA News and Views
Regional Representatives Meet in Knoxville
by Becky Bruce
On January 11, 2002 another semiannual regional representative meeting was held at the ACA office in Knoxville. All of the regional representatives were in attendance, with the exception of Karlene Kaufmann (Region C), who was unable to attend. The meeting started Friday morning at 9 a.m. and continued through the day until 4 p.m. There was a lot to discuss on many different subjects and a large amount of material to get through in a short amount of time. The objectives of the meeting were to review new peer training materials; to review the processes for the training of peer trainers; to clarify roles and responsibilities; to identify problems, needs and questions; and to enhance the communication between staff and the representatives and among the representatives themselves.
One of the first topics discussed was the changes that have been implemented in the National Peer Network and the revisions made to the Peer Training Seminar format. It was important for the representatives to know how their roles would change, what responsibilities would remain the same and what would be passed to the certified visitor. With the changes that have been made, we hope to be able to promote a closer relationship between the regional representatives and the certified visitors within their regions. The representatives were pleased and very excited about the revised format. Several suggestions were made and incorporated into the new training materials. It was a unanimous vote that all future attendees will be very pleased with the quality of the presentation and the resource materials provided. Kathy Spozio has written an article detailing the changes and the upcoming sessions in the Peer Visitation Corner of this issue.
Other areas that were discussed were the new Youth Activities Program (YAP). This program is specifically targeted to youths, ages 18 and younger. There are many different programs and activities within YAP. YAP Central Station is featured on the ACA web site and provides information about the youth programs and services available through the ACA (http://www.amputee-coalition.org/youth.html). Included is information on the ACA Annual Youth Camp and the newest program addition, bio - fit. It was important for the representatives to know about these programs, as they will aid the YAP program in identifying children within their Regions for participation in these activities.
Here is what some of the representatives said about January's meeting.
Joyce Arthur - Region D - "The regional rep meeting was so full of new information and new programs that my head was reeling at the end of the day. The exciting new YAP programs for the youth are fantastic. The new peer training course and training of the trainers are designed to give more credibility and certification for the peer visitors to present to the hospitals, rehab facilities, etc. New networking with several other organizations (e.g., Diabetes, Heart, and Cancer Associations) and the list continues to grow. There are people working very hard in Washington D.C. to get laws passed and/or changed to improve the lives of all amputees everywhere. The ACA is moving on the 'fast track' . . . . . Onward and upward!"
Denny Spencer - Region L - "I was very impressed with the reps. I know they are very caring and loving people. I like the new ideas from the staff and feel that the ACA is heading in the right direction for the next decade. I was impressed with the commitment of everyone and it will help me work harder to help the people in my own region even more."
Karen Gardner - Region J - "As a regional rep, I value the opportunity to visit ACA headquarters and stay in touch with staff and programs in several ways . . . meeting and sharing experiences and insights with the staff and other reps. Especially important as representatives of the NPN was learning about changes to the program and the peer training seminars, including having the opportunity to review training materials and give input; and getting first-hand updates on ACA programs and projects in general is very helpful toward being knowledgeable about things I want to be able to share with folks from my region."
Ed Collum - Region I - "Thank you for another great regional representative meeting. The outreach program "LLEAP" is going to be excellent. ACA has outdone itself again..."
Charlie Steele - Region A - "Thanks to the ACA I am personally convinced that peer visitation, counseling, and support are the most important early interventions we can provide to a person experiencing limb loss. I am impressed at the vision of the ACA staff on the continuing evolution of peer visitation training. They keep repeating over and over again that ' a peer visit is not about you; it's about the person you are visiting.' That's why support group leaders need to arrange training for their members. There is a certain percentage of untrained peer visitors out there who can potentially do more harm than good or no good at all."
It was an extremely busy day and worth every minute. We all established a better understanding of how generous each representative is with their time and energy and the level of dedication each brings to their position as a volunteer. They do a great job and are committed to serving the amputee community by providing support, education, and resources and by spreading the word about the ACA and it's programs. The ACA would like to thank each and every one of our outstanding regional representatives and encourage you as support group leaders to build a strong relationship with your representatives and help them stay up to date on your group activities.Send address changes and membership requests to the Amputee Coalition of America (ACA), 900 East Hill Avenue, Suite 205, Knoxville, TN 37915-2566. ACA membership is $25 per year for individuals and $75 per year for Support Group Membership. The opinions and editorial viewpoints expressed in the Communicator are those of the authors and do not necessarily reflect those of the Amputee Coalition of America. This publication is partially supported by Grant No. US59/CCU41-4287-03 from the Centers for Disease Control & Prevention (CDC). Its contents do not necessarily represent the official views of the CDC. ©2000 by ACA; all rights reserved. Articles may be reprinted with proper acknowledgements unless otherwise specified by author.