Amputees find connections, support, peers; Limb loss group fills a need in Central Mass.

Byline: Lynne Klaft

LANCASTER - According to the National Association for the Advancement of Orthotics & Prosthetics, there are two million amputees in the United States, not including military personnel, but local activists say there only six support groups in Massachusetts.

"I haven't been able to find out how many amputees live in Massachusetts, but can you imagine, we only have six support groups and only one in all of central Massachusetts," said Rose-Marie Bissonnette.

Mrs. Bissonnette founded the Central Massachusetts Limb Loss Support Group four years ago after she could not find one any closer than Springfield.

"I was in a horrific auto accident on Oct. 19, 1996; I will always remember that date. I was literally crushed inside the car which is what happens when you run into the bed of a tractor trailer truck," Mrs. Bissonnette said.

She suffered multiple broken bones and internal bleeding. The doctors tried to save her leg, but told her that there were no guarantees that her leg bones would ever heal properly.

"When they told me it was that or amputate below the knee, I asked if there was somebody that I could talk to, and there wasn't anyone at the hospital. Finally, my surgeon had a patient of his who lost his leg to diabetes come and talk to me.

"He was so sweet; he even took down his trousers and showed me how his leg was attached. Of course he asked my permission first and my husband was right there in the room, too.

"But I would've liked to have talked to a woman. There are so many things that only another woman would know ... like could I continue to wear high heels, what's it like to put nylons on, things from a woman's perspective," Mrs. Bissonnette said.

After attending a 2003 Amputee Coalition of Boston conference, Mrs. Bissonnette was so inspired by the support and educational aspects that she trained to become a certified peer visitor.

She then found that there were no support groups available in Central Massachusetts.

"The closest one was in Springfield, there was one in Braintree and another in Woburn and three in the Boston area, so I decided to start one here," Mrs. Bissonnette said.

After talking to fellow members of the Lancaster Disability Commission, Mrs. Bissonnette felt encouraged to "take it off the ground and go with it."

She found a location at Clinton Hospital that was handicapped- and wheelchair-accessible, and started a once-a-month support group.

"The first meeting, only one person showed up, then at the second, only two. The third meeting it was pelting, pouring rain and I figured nobody was going to show up," Mrs. Bissonnette said.

But three people did show up and after four years, the support group has an average of 15 to 20 people coming to share, to laugh, to tell stories, and to listen to guest speakers share the newest information on prosthetics, nutrition, tai chi, massage, health, taxes and many other programs.

"We had Paul Martin, a para-Olympian silver medal winner, come and speak. What a nice guy, he even passed his running leg around for all of us to see. And we had Eddie Folger, who lost his leg just before he signed up for the Red Sox. Because we have practically no budget, all of our speakers have been volunteers, and they have all been wonderful to us," Mrs. Bissonnette said.

Marilyn Chambers, who is not an amputee, but has had knee surgeries, is also part of the group.

"We all help each other. One person will say your gait is not right; you should go get that seen to. We guide each other. And we laugh a lot," said Mrs. Chambers.

"Well, you gotta have a little fun, too," said Mrs. Bissonnette, adding that the group has a Valentine's Day potluck dinner, a summer barbecue and a Christmas party at the end of the year.

"And just try finding a restaurant that can handle a lot of people in wheelchairs! That's the hardest part of all," Mrs. Bissonnette said.

The group learns terminology of prosthetics, a necessity in order to communicate to one's prosthesis.

"You have to communicate well in order to get the right fit to your body. A person can gain or lose weight ... just getting older makes your body change. And you have to change your prosthetic every three to four years, depending on your level of activity," Mrs. Bissonnette said.

"Once I was at a meeting and my foot fell off! They wanted to hoist me down the stairs, but I said wait, took my leg off, looked at it and figured that if someone could find me a clamp, I could clamp it together until I got home, where my spare leg was. That worked. I drove home and called my son to leave my spare leg in the garage because I didn't know how far I could get with the clamps on. When the garage door opened, there it was right in the middle of the floor with a spotlight on it. I just had to laugh out loud. You know, these things happen, and that is the kind of things we share in our group," Mrs. Bissonnette said.

The support group also has an outreach program that visits recent amputee patients and their families in hospitals or at home.

For more information on the support group, call Mrs. Bissonnette at [phone], or go online to www.CentralMaLimbLoss.org.

Mrs. Bissonnette has a guiding principle that is printed in her support group brochure that she wanted to share: "A true disability is what we don't do with what we have, not what we can't do with what we don't have."

ART: PHOTO

CUTLINE: Founder Rose-Marie Bissonnette of the Central Massachusetts Limb Loss Support Group and member Marilyn Chambers work for awareness of the growing number of amputees in the state.

PHOTOG: LYNNE KLAFT