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Life After Limb Loss

Posted on: May 10, 2017

Nearly 2 million people living in the United States have experienced limb loss, according to the Amputee Coalition, a national nonprofit patient advocacy organization for people affected by limb loss. Over half are a result of vascular disease (including diabetes and peripheral arterial disease). Other causes include trauma and cancer. It is estimated that by 2050, 3.6 million people in the U.S. will be living with limb loss. Mercy Medical Center Amputee Support Group participants Michael Beitler and Attiah Fogle share their stories of life and hope after limb loss.

Amputee Support Group for Canton Ohio - Stark County - Amputee Coalition - Mercy Medical Center

Michael Beitler on Life After Limb Loss: ‘Don’t get comfortable with where you’re at, unless that’s all you ever want to achieve.’

Beitler underwent an above the knee amputation in 2012. “I was diabetic, and when I was diagnosed, they said I had probably been diabetic for some time and just didn’t know it,” Beitler says. Complications from diabetes came in the circulatory system of his legs. After surgery, Beitler was scheduled to see Mary Kay Jezewski, LPTA, one of Mercy’s three licensed physical therapists who specialize in treating amputees. Cindie Kurzen, LPTA, and Christine Pasiuk, LPT, also specialize in limb loss therapy. “The three of us are pretty much the neurotherapy therapists in outpatient, so when amputees began coming to us more frequently, they were being referred to us,” Jezewski says.

When Jezewski first started working at Mercy in 1975, she said patients had nothing that looked like Beitler’s prosthesis. “My first amputee patient was a man with a wooden leg and wooden foot. What we see now are legs that change, because of the war, sometimes in a matter of months. The advances they are making in computerized components, feet, and knee sockets change so quickly and so often that we’re learning by working with our patients,” she says.

When Beitler received his leg, he knew it was mechanically phenomenal. “He had heard about these computerized legs, and he had it in his mind that he would get the leg and that would be it,” Jezewski says. “He thought he would be walking normally and back to his life, and it never quite works that way. The work, the effort that they have to put into walking with an above the knee prosthesis is with one, 100 times more energy expended than a person with two legs, and with two, 200 times more energy expended than a person with two legs. So when Mike came and realized it wasn’t going to be a quick fix, he was disappointed.”

“I was mad,” Beitler adds. One of his fears was falling. “I remember saying, ‘What happens if I fall.’ Mary Kay said, ‘The question is not will I fall, the question is when will it happen, because you will fall.’”

Jezewski says Beitler was terrified, and she didn’t blame him. “We tell our patients at our support group frequently that it’s important for them to know that what we know about being an amputee comes from them. We have legs, so we can only tell them so much. We can’t tell them what it feels like. We can’t begin to even suggest that we know how they feel because we don’t. We can say we understand what you’re saying because we’ve heard those kinds of things before, and this is what we know from other patients.”

Recognizing that Beitler was frustrated, upset and feeling a little depressed, Jezewski said they had a talk one day at therapy, which proved to be a turning point. “I said, ‘This is you. I can only do as much as you’re willing to put in.’ And it’s that place that the patient has to come to either accept the level they are at or to push for a higher level of function,” Jezewski says.

After that conversation, Beitler says it just clicked. “I came back the next week and said, ‘I get it.’ I don’t know why but the phrase ‘Limitations are self-imposed’ really hit me.” 

Once past that hurdle, Beitler started to progress quickly. During therapy, he learned how to start out with the leg on for just a couple of hours. Then he practiced using a walker and learned how to get up off the floor, shift his weight onto the limb, and go up and down stairs. “I had to learn to trust the leg because it felt at first like I was walking on a stilt,” he says. It wasn’t much longer before he was walking with a cane and then on his own. 

Beitler’s advice for other amputee patients is, “Don’t get comfortable with where you’re at unless that’s all you ever want to achieve. There is always something else you can try. Figure out how to do it, because you can’t do things the same way.”

Help for amputees and their families in canton ohio - mercy medical center support groupAttiah “Tia” Fogle on Overcoming Obstacles

Fogle never imagined at age 19 she would become an amputee. But on October 25, 2012, while traveling through Toledo with a friend, she was in the passenger seat when the vehicle she was riding in was involved in a serious car accident. After being life-flighted to a hospital in Toledo, Fogle underwent a six-hour surgery. 

“My internal organs ruptured, and I was bleeding out,” Fogle says. “The surgeons didn’t know if I was going to survive.” To save her life, Fogle eventually had to have both legs amputated above the knee.

Her mother remembers the early days after her daughter received her prosthesis. “We would bring this big bag with the legs in and fight with her to put the liner on, and I would get mad because she would be on the phone and we’re fighting to get her legs on,” says Linda Fogle.

“Part of why I didn’t want to was because it hurt,” Fogle says. “I had open wounds on my limb, and it was painful to have anything on it or to bear weight. Any time I would take my leg off, it would be bloody, and it just hurt,” she says.

Like Beitler, Fogle began seeing Jezewski for outpatient therapy. She helped Fogle get an appointment with a Mercy Medical Center surgeon who performed a revision, and that changed pretty much everything, according to Fogle and her mother.

A revision is when a surgeon performs another procedure to either reshape the limb, change the contour of it or, in Fogle’s case, remove tissue for better healing.

“After that surgery, the wounds healed, and I took the initiative to put everything (prosthesis) on. I feel like I started to progress really fast.”

Jezewski says they talked about the extreme amount of energy it takes to walk with two above the knee prosthesis. “There’s no sin, and there’s no shame in being at a wheelchair level. She can do that. So she can both ambulate with her prostheses in a walker, and she can be independent at a wheelchair level.”

With the wounds healing, Fogle had another challenge to tackle. Since the accident, she says she was on a lot of pain medicine. She started going to a pain management program, which helped her cut the amount of pain medicine she was taking. “I got off the heavy narcotics. Now I’m on a pain patch,” she says.

She achieved greater independence when she reached another milestone by learning how to drive. “We know for every patient, what independence is can look very different,” Jezewski says. “She can drive now and get herself in and out of the car from a wheelchair level.” 

Fogle also participates in local sports programs including sled hockey, where she had the opportunity to travel to other cities. “I tried it. I thought I would hate it, but I loved it,” she says.

Mercy Offer’s Stark County’s Only Amputee Support Group

Today, Beitler and Fogle both regularly participate in Mercy Medical Center’s Amputee Support Group. The group meets at 3:30 p.m. on the third Tuesday of every month at Mercy Medical Center in the Cancer Center Library to provide a safe place for amputees and their family members to connect with others who have experienced limb loss. Mercy’s Amputee Support group began in 2014. It is one of over 260 support groups nationwide registered with the Amputee Coalition and the only one in Stark County. Members learn ways to adapt to life’s challenges through education and support; learn about local opportunities for amputees such as sport and volunteer programs; and participate in letter campaigns to legislators regarding medical and prosthetic care. 

Beitler says the group is both supportive and a way for him to support others. “I’ll hear things and think, ‘Oh yea, I forgot about that.’ And then you can maybe help somebody else too.”

For more information about Mercy’s Amputee Support Group, call 330-489-1135 or visit cantonmercy.org/amputee-support.

 

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