November 23, 2014

Elyria
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Amputee support group is only one of its kind in Lorain County


The Next Step, a new amputee support group, is helping Lorain County amputees deal with their emotional and physical trauma.

Members of The Next Step. FRONT ROW: From left, Ed Myslinski, Mike Gadbois, Steve Andresh, Richard Narrows, Patty Golobich, Annie Fullmer and Bill Hagelin. Back Row: Nicole Gowell, Austin Charanghat, Gordon Jamieson, Michelle Kroboth, Vince Ferrini, Constantina Demou and Tom Naylor. KRISTIN BAUER/CHRONICLE

Members of The Next Step. FRONT ROW: From left, Ed Myslinski, Mike Gadbois, Steve Andresh, Richard Narrows, Patty Golobich, Annie Fullmer and Bill Hagelin.
Back Row: Nicole Gowell, Austin Charanghat, Gordon Jamieson, Michelle Kroboth, Vince Ferrini, Constantina Demou and Tom Naylor. KRISTIN BAUER/CHRONICLE

“It’s more than getting them up and walking,” said therapist Michelle Kroboth, who works with group members at Mercy Health and Recreational Center in Amherst. “It’s getting them to live their lives again.”

The group, which has about 25 members, is the only amputee support group in Lorain County, according to Dr. Constantina Demou, medical director of the Mercy Wound Center. Meetings, which are held every other month, are open to all amputees and their families, as well as people about to undergo an amputation and their families. The group held its first meeting in April.

Demou said the goal of the group is to bring amputees together to help one another, their families and those about to undergo the procedure.

“As physicians, we can heal wounds, but we don’t know, really, what they’re going through,” Demou said. “Only another amputee would know that.”

The group, which held a Christmas party Tuesday, has heard from occupational and physical therapists and psychologists at previous meetings. Topics have included remodeling homes to make them more accessible for amputees, ensuring a proper fit for prosthetic legs — most amputations involve legs — as well as solving transportation problems, since many amputees are unable to drive.

Some group members mentor recent amputees or patients about to undergo an amputation. Mentor Edward Myslinski, who had his right leg amputated in 2011 due to diabetes, said it’s hard for able-bodied people to understand what it’s like for an amputee. Prospective and new amputees worry about a variety of problems including falling out of bed, using bathrooms and sexual performance.

Bill Hegelin, of Sheffield Lake, talks about how his hydraulic knee will make returning to work possible.

Bill Hegelin, of Sheffield Lake, talks about how his hydraulic knee will make returning to work possible.

Myslinksi, a 64-year-old retiree from Lorain who ran an industrial catering business, said he wondered if he would be able to maintain his quality of life. That included doing everyday chores, driving and playing golf.

Myslinski also wondered if he would be accepted by friends after the amputation. He said the process means overcoming a variety of fears. “It’s almost like you’re a newborn baby learning how to function,” he said.

Group members include Bill Hagelin, a 57-year-old bridge construction worker from Sheffield Lake. Hagelin had a hereditary arterial disease that led to excruciating pain in his left leg the last few years, which was exacerbated by the physicality of his job.

He had seven operations in two years and after the last one, was told an amputation was necessary. Hagelin said the prognosis was devastating.

“Just the thought of the (lack of) mobility. The thought of never being normal,” he said. “I didn’t know what to expect. I didn’t know if I’d ever walk again.”

Equipped with a $75,000, waterproof, titanium leg, Hagelin is now walking two miles a day and hopes to return to work in April. Demou and Kroboth said Hagelin’s recovery has been miraculous. Hagelin credits his therapist, support from his wife, Michelle, and his work ethic.

“I’ve worked my butt off since I’ve been 16-years-old, and I’ve never stopped,” he said. “It’s not going to get the best of me.”

Hagelin also credits the camaraderie and support he’s received from group members.

“It’s a wonderful thing,” he said. “You think you’re in this situation on your own and they’re so many people out there who are going through the same thing.”

Austin Charanghat spoke of his experiences being an amputee in between playing selections of holiday tunes as well as blue grass music Wednesday evening. KRISTIN BAUER/CHRONICLE

Austin Charanghat spoke of his experiences being an amputee in between playing selections of holiday tunes as well as blue grass music Wednesday evening. KRISTIN BAUER/CHRONICLE

Guitarist Austin “Walkin’ Cane” Charanghat, who had his left leg amputated in 1996, entertained at the party with music and stories about his experiences as an amputee. Charanghat, who has performed in Australia, Colombia, England, France and Nepal, said the amputation hasn’t hampered his career.

However, Charanghat, 42, of Cleveland, said some situations can be awkward. He told of wearing shorts while taking his 8-year-old and 11-year-old sons to school. Most of the children thought the prosthetic leg was cool, but at least one was frightened by it.

Charanghat said he discussed the prosthetic leg with his sons when they were very young and emphasized that they shouldn’t be afraid of people who are different. Charanghat said his sons and their friends are comfortable with the leg. “It’s a big pain, but it works out in the end,” he said.

Mylinski said group members are very supportive and encourage one another before medical procedures. He said they help new members overcome the depression they sometimes experience after an amputation.

“Depression is the stage before acceptance. Once you accept it, there are no limits to what you can achieve,” said Mylinski, who plays golf four times per week. “Life isn’t over because you’re an amputee.”

Contact Evan Goodenow at 329-7129 or egoodenow@chroniclet.com.

Limb Loss

  • There are nearly 2 million amputees in the U.S. and 185,000 amputations occur annually.
  • About 54 percent of amputations are due to vascular disease, including diabetes and peripheral arterial disease, 45 percent are due to trauma and 1 percent are due to cancer.
  • About 55 percent of people with diabetes who have a below-the-knee amputation require amputation of the second leg within two to three years.
  • Nearly half of those who have an amputation due to vascular disease die within five years, which is a higher five-year mortality rate than for breast cancer, colon cancer and prostate cancer.
  • Blacks are four times more likely to have amputations than whites.
  • Annual hospital costs for amputations in 2009 were $8.3 billion.

SOURCE: Amputee Coalition

Amputee Support

WHO: The Next Step, an amputee support group for Lorain County residents.
WHAT: The group helps amputees and their families deal with emotional, financial and physical challenges from amputations.
WHEN: The group meets at 6 p.m. on the first Wednesday of the month, every other month. The next meeting is Feb. 5.
WHERE: Meetings are held at the Mercy Rehabilitation Center, 47160 Holstein Drive, Amherst. For more information, contact Dr. Vincent Ferrini, chief medical officer of Mobile Hyperbaric Centers, at (440) 960-3060 or vferrini@mhcenters.com.