Out Of Her Own Loss, Amputee Tries To Fill Void For Others

September 22, 1991|By Cindy Parr | Cindy Parr,Contributing writer

WESTMINSTER — Nina Roelke, who lost a limb to amputation, is determined to make a difference for those who face the same plight.

In 1985, Roelke hadher right leg removed after it had been ravaged by a bone infection called osteomyelitis.

Today, through a support group she helped found, Roelke shares her experience with people who are about to undergo an amputation, hoping to ease their sense of despair and anxiety.

"I will never be able to beat this disease," Roelke said. "I am still struggling with this disease, and I will for the rest of my life.

"But, by sitting with someone who is about to lose a limb, I know that I can help them deal with what's going to happen to them, because I have been there. I know that I have given them peace of mind. They know that someone will be there for them when it's over."

The 43-year-old Westminsterresident is president of the Amputee Coalition of America, an organization made up of about 400,000 amputees in 32 states. She also coordinates the Amputee Association of Maryland, a 725-member organizationshe co-founded in 1987.

"When I had my right leg amputated in 1985, I didn't know what to expect. There was no one to talk to, no typeof support group at all," she said. "It was so bad when I went through it. I had to make a decision -- whether to lose my leg or keep what I had."

Since 1972, Roelke had undergone some 38 separate surgeries on her right leg before she finally decided upon amputation.

"I wore a 70-pound brace on my leg and was in and out of hospitals having the infection treated. There was the chance that I could possiblylose my life due to the osteomyelitis. I had to decide whether I wanted to go on like this or lose my leg and live my life without a limb."

Finally, in October 1985, Roelke entered Kernan Hospital in West Baltimore to have her leg removed.

Once she made the decision, Roelke said she "realized that I didn't even know what a prosthesis (artificial limb) looked like or who to ask. After the operation, I found that there were others just like me who were looking for support."

In 1987, Roelke and John Erwin, a fellow amputee from Kernan Hospital who is now president of the AAM, got together with Shirley Cammack, the patient services coordinator at Kernan. The trio decided to gauge the interest level in starting a support group for amputees.

"Shirley had gotten the amputee clinic listing from the hospital and collected the names of 27 amputees whom she thought would be interested in starting a support group," Roelke said. "Most everyone was interested, so in November of 1987 we started having support group meetings.

"In April 1988, we became incorporated and got our non-profit status from the (Internal Revenue Service). I began working out of myhome, contacting physicians, social workers and physical therapists and letting them know that we were available."

Within a year, the association has reached out to about 300 Marylanders who had receivedan amputation or were preparing to undergo an amputation.

"This was more than we could have imagined," said Roelke. "Through our network of social workers, physicians and physical therapists, we knew that there were people who were looking for support as well as those whowanted to help others."

By June 1988, Roelke's work had outgrown her dining room, but she was able to set up shop at the hospital.

"Shirley Cammack asked the hospital's administration if we could haveoffice space and they gave us a room big enough for one person," said Roelke, "We have been operating the association from that office inthe hospital ever since."

In 1988, the AAM established its peer-visitation program, which has been successful in helping people both before and after amputations cope with their loss.

One year after their amputation, post-amputees who participate in the program are matched up with a person who is preparing to have an amputation. Roelke or Cammack usually arranged the matches by age, sex, reason for amputation, and the type of amputation. The partner is sent to the hospital to talk to the amputee.

Each peer amputee must participate in a daylong training program offered at Kernan. The program prepares the helper for the types of questions and behaviors he or she may encounter during the visit and demonstrates the proper procedure for visiting a patient.

"This program has been very successful," Roelke said."We presently have 67 counselors who go to 17 hospitals throughout the state."

In addition to her work over the past few years with the AAM, Roelke has been active in the national amputee organization, which she helped establish in 1989.

The Amputee Coalition of America, which was established from 32 support groups throughout the nation, elected Roelke as its president at the annual seminar in March in San Diego.

Roelke said the 40,000-member coalition was established to address uniformly the many issues that concern amputees.

For example, the organization is working to stem cutbacks in money for federal prosthetics education programs.

Last year, the federal government cut $1.5 million from such programs, resulting in the closing of prosthetics schools at New York University and the University of California at Los Angeles.

"We are trying to get this funding restored," Roelke said. "We have been lobbying in Washington, participating in a letter-writing campaign and talking to members of the Senate to convince them that we need to get this money back."

The organization also has undertaken efforts to educate health-insurance professionals on determining reasonable costs for prosthetics.

On a day-to-day basis, Roelke volunteers full time, helping people who are preparing for an amputation.

"Working with these people is something that is very dear to me because of what I did go through. I try to make iteasier for others. I try to prepare them to alter their lifestyle. Iput in as many hours in a day as I can, depending on my health."

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