By Dick Mooney

One issue of enduring interest for support group leaders, and one that most leaders describe as a perpetual problem, is the need to arrange meeting programs that will attract and be interesting to their members, Recognizing this, the June, 2001, Communicator included a lengthy article on how to select meeting topics and speakers, together with a list of thirty three program ideas. If you missed this, you can find it in ACA's Communicator archives at http://www.amputee-coalition.org/communicator/vol2no3pg1.html. 

It was no surprise that there was a lot of talk about this "problem" among support group leaders at the recent annual meeting in Anaheim, where strong interest was expressed in receiving additional program help from The Communicator. Accordingly, we found nine support group leaders who agreed to describe for us their "Top Three" programs in terms of member interest and attendance. Their nominations appear below. But first, an important point should be made. 

The intent of this article is to give you real-life program ideas you can duplicate, develop, and bring to your own groups. But you may be tempted to come to the quick conclusion that too many of these ideas depend on the availability of specialized or unique program resources, such as an amputee-anesthesiologist who specializes in treating phantom pain, a local college that teaches physical and occupational therapists, or an amputee who is a black belt in Taekwondo. Do not be dismayed by this or be too quick to discard an idea, thinking, "It can't work here." Many of these seemingly unique ideas can be duplicated elsewhere if modified in creative ways or if you are innovative about finding a qualified local presenter for the same or a related subject. For example, you may not have an amputee who is a Taekwondo expert or who specializes in treating phantom pain, but you could probably find able bodied experts who would be equally as interesting. Remember, an idea is only a start. Before an idea can become a program it must be massaged, developed, nurtured, and cultivated.

Finally, you will quickly see that there is a distinct pattern here, and this, in itself, will help you with ideas about what programs to present to your group. Of the 27 programs described below, six involve prosthetics topics, five cover physical fitness and exercise, three are about phantom pain, three cover legal and social security issues, two have to do with diabetes topics, and two address personal safety considerations.

Here are the "Top Three" nominations.

Becky Bruce rbruce@amputee-coalition.org Amputees Coming Together (ACT), Knoxville, Tennessee.

New Prosthetic Technology

The support group invites two or three local certified prosthetists to discuss the latest in prosthetic technology. They are asked to bring demonstration items, if available, and to discuss each device's pros and cons. They are also asked to discuss patient satisfaction from the perspective of their clients who are using the product and how it compares to some of the older components. They discuss functional levels (i.e., who would qualify) and the ease of reimbursement.

Driver Evaluation

We invited an occupational therapist to speak about the driving assessment program at one of the local hospitals. She was certified in driving assessment and explained how the program works, who qualifies for it, how one learns to use adaptive driving equipment, and the importance of being re-evaluated if one's disability status changes. The different types of adaptive equipment were discussed, together with sources of supply, costs, and suitability for various individuals.

Physical Fitness and Wellness

The group invited an employee of one of the area wellness centers to discuss what they offered amputees. He explained the importance of physical fitness and what special adaptive devices and personal assistance they offer to meet the special needs of people with limb loss. He described the exercise programs they have available and discussed how exercising in a wellness center differs from attending a commercial gym that concentrates on serving able-bodied clientele. 

Richard R. Friend Pallet4@aol.com, Leader, Tri-state Amputee Support Group, Cincinnati, Ohio.

Anything About Diabetes

We have had several speakers on diabetes-related topics ranging from implanted insulin pumps, to diet, to preventative measures. The programs our members like best are basically non-structured, with questions and interaction ongoing. 

Available Therapy Services

We invite speakers from local facilities that provide such therapy services as aquatic and other sports, and custom tailored programs for amputees.

George Velasquez

George drives eight hours to be with us and present his dance class. He is so enthusiastic, people just love to watch and listen to him--and actually get up and give it a shot.

Note: We have found that food is always popular, so when we couple a regular program with a potluck and make a special effort to invite families and significant others, it usually doubles the attendance.

Marshall Goldstein dduk@attbi.com, Florida Amputee Support Team, (F.A.S.T.) Inc., South Florida. Marshall is the editor of the F.A.S.T. Times newsletter and a Board of Directors member.

In-Service Type Training Session For Future Occupational and Physical Therapists

Florida Atlantic University brought their first year OT and PT trainees to a meeting. They talked about some of what they had learned, such as falling and fall recovery techniques. Then we split up into groups consisting of one amputee with two or three students to answer their questions based on the amputees' real life experiences and expertise. After that we shifted amputee and trainee groups and did it again to give the trainees a broader perspective.

Split Need Problem Solving

All caregivers gather in one area and at the same time all amputees gather separately in another to discuss problems and solutions. This allows each group to deal with their own unique problems without burdening their partners. 

Phantom Pain

After a presentation by a medical doctor who specializes in pain treatment, a second presentation was made by an acupuncturist who gave actual demonstrations to all those who wished to participate.

Lou Keyes lkeyes@mwis.net, L.E.A.P.S. Inc., Greater Kansas City

Liners and Suspension Sleeves

Jeff Watt, with ALPS, the manufacturer of prosthetic locking devices, distal gel pads and liners, silicone suspension sleeves and socks; and Dave Verhoff, CPO with Hanger, a local prosthetist who uses these products, explained their advantages in both technical and practical terms. Jeff brought plenty of samples and people liked having them to pass around and discuss with others. This triggered numerous questions and an active exchange of information about what attendees were wearing.

The "C-Leg"

Guest speaker Mike Schultz, Prosthetist/Orthotist with Hanger, shared information on the C-leg, which is the first electronic knee joint system to provide variable swing phase controls using on-board sensor technology and hydraulic damping. Lots of questions were asked about how it works, its price, insurance coverage issues, etc. (The program could have been improved if an actual C-Leg user could have attended to demonstrate the product.)

Phantom Pain

Guest Speaker Tammy Truax, an occupational therapist, explained the results of a phantom pain study she participated in together with a number of other graduate students who completed their master's degree in occupational therapy. Their findings are expected to help future occupational therapists better understand the impact of phantom pain, and also help amputees by offering techniques to help manage their pain. The discussion was very lively. Attendees were anxious to see how their pain compared with others' and to learn about new ideas for dealing with it. (Other groups could duplicate this program by finding a pain management professional who has experience in treating phantom pain through both traditional and alternative methods. There will always be an interest in this topic.)

Nancy McGowan unoleg@aol.com, Amputee Support Assn. of Hampton Roads, Norfolk/Newport News, Virginia. Board of Directors since 1987 and Past President, 1999, 2000, and 2001.

Knowing Social Security and How It Works For You

A specialist from the Social Security Administration spoke to our group about available benefits for people with disabilities. Many of our members were surprised to find that there were so many benefits they didn't know about and, therefore, were not receiving. (This was such a popular subject that what was supposed to be a two hour meeting turned into three hours and we still had to ask the speaker to return the following month to finish! )

Diabetic Diet Balance

A specialist from a local hospital diabetic clinic talked about "Diabetes and Balancing Your Diet." This program was not only interesting to attendees with diabetes but also for many who do not have diabetes but wanted to learn how to eat a more balanced diet themselves.

Exercising Forever

A physical therapist from a local hospital amputee clinic spoke on how amputees should exercise to keep their bones and muscles strong. The speaker demonstrated easy exercises everyone can do.

Harry Pallett H_pallett@yahoo.com, President, Mutual Amputee Aid Foundation (MAAF), Los Angeles, California.

Sitting Exercise Program

We are fortunate to have an arm amputee member who teaches exercise to aged people and who brings a lot of energy, movement, and humor to her presentation. We also have access to a professional from a local university that operates a Center of Achievement for the Physically Disabled. Both of these programs are outstanding in content and are usually very well attended. 

Gait Clinic

This program is usually very popular. We invite competent prosthetists to conduct our clinics and we are careful to reduce the appearance of favoritism by alternating presenters. There is only time during a meeting to work with three or four members, who are recruited and prepared in advance, but everyone learns from what they see and hear.

Phantom Pain

We are lucky in Los Angeles to have access to several speakers who are uniquely qualified and experienced in treating phantom pain, including an anesthesiologist who is also an amputee. Pain is one of the most enduring problems for many amputees and, therefore, a subject that always excites interest and attendance. We have also presented pain-related programs by an acupuncturist, by a specialist in Chinese herbal medicine, and by a prosthetist who talks about the effects of the prosthesis on amputee pain.

Josephine Raczkowski Dlbelfrey@aol.com, Perpetual Motion Support Group, Albuquerque, New Mexico

Personal Safety

Our program on how to protect yourself in your home or in public if you are disabled presented by our local police department is always very popular.

Diabetes Topics

Because so many amputees have lost limbs due to complications of diabetes, our programs presented by the American Diabetes Association and by a nutritionist who discusses both types of diabetes are very popular.

C-Leg Show and Tell

We invited the first patient we heard about in New Mexico who had a C-leg to come and demonstrate it for us. This person turned out to be very well informed on the product and how to go about getting one.

James Stewart sds@globalserve.net, Newsletter Editor, Chedoke Amputee Peer Support (CAPS), Hamilton, Ontario, CANADA

Disability Awareness Outreach

One of the most rewarding events we have each year is when we go as a group to the local university (in our case McMaster University), and meet with OT and PT students for a day-long seminar on disability. Facility and students are very receptive to this concept and it gets our members out of the regular meeting "rut". The day starts with a welcome general assembly, then breaks into smaller groups held in available classrooms. Topics discussed range from how we perceive we are treated by the government's social assistance programs and the health professions, and what we'd like to see changed and to how we cope on a day-to-day basis. There is a final re-assembly where concepts are bantered about and questions answered; then usually a light round of snacks. 

Spokesman From the Local Police Department

Most police departments have a community liaison officer who will come to meetings to discuss personal safety. They tend to be enthusiastic and entertaining speakers. The presentation typically deals with what steps we could take that would reduce the chances of us getting into serious trouble. Among the points covered are maintaining good communication with our neighbors, avoiding dark and isolated parking areas, and planning ahead. 

Speaker From the Local T'ai Chi Club.

This meeting was different because we were up and active instead of just sitting. Even those who were of limited mobility found that they could participate. Invitations were offered to anyone to come out to the club at any time to learn more.

Liz Zemke lzemke@mail.intracorp.com Central California Amputee Education and Support Group, Fresno, California

Abilities Fair

We try to have an abilities fair every two or three years. We invite all local prosthetists, many component manufacturers, breast prosthetics and clothing suppliers, durable medical equipment providers, vans and adaptable housing/equipment suppliers, hospitals and rehabilitation centers, and the Center for Independent Living. The prosthetists buy box lunches for those who attend--usually well over 100. Everyone learns a lot!

Legal Issues and Advice for Amputees

One of our members is married to an attorney who specializes in Medicare/Medical and geriatric/senior issues. She talks about legal problems typically faced by people with disabilities. She also talks about Social Security disability and estate planning. 

Take Care of Yourself--Fitness for Amputees

There is a local physical therapist who also is an amputee and a black belt in Taekwondo. He does a great job of talking about fitness and presenting exercises for the amputee--great for those in wheelchairs, on crutches, canes, and walkers, or for those who are at a high activity level.