Lori did not plan to visit casinos or nightclubs during her trip to Las Vegas in October. But when she boarded a 6:00 a.m. flight with her boyfriend, photographer Jerry, she was a little concerned she was taking a gamble.

Lori, who describes herself as “the kind of person who researches everything,” could hardly believe she was on her way to Ortho Rehab Designs to be fitted for a $12,000 pair of Helios Orthosis (Helical Energy Loading Integrated Orthotic System, or Helios) braces to help manage her Charcot-Marie-Tooth (CMT) symptoms. The Helios would be her third attempt at leg braces.

“I was always tripping,” she says. “In high school I couldn’t move as fast as others in gym class and I couldn’t jump. I knew something was wrong but wasn’t really worried about it.” When she was 27, Lori received a diagnosis. “This doctor saw me and he said right away, ‘You have CMT,’ and he referred me to get AFOs (ankle-foot orthotics),” she recalls.

Lori is the only member of her family with CMT. “My mother and father tested negative, and neither my brother nor sister have it,” she reports. “When I found this doctor it was kind of nice that he knew what he was talking about,” she says, noting how rare specialized CMT knowledge can be even among physicians.

“I didn’t like my first pair of AFOs. They never seemed like they fit right so I didn’t really wear them. At that time my gait was off but I was still able to get along without them.” A few years later, while living in Charlotte, North Carolina, she got a second pair. “They were the standard plastic molded kind, and I had them until October 2012, so I had them a long time.” Increasing leg and knee pain led to extensive research and, eventually, the Helios. Concerned about the hefty price tag, Lori secured her insurance company’s pre-approval for the out-of-network purchase. However, when the claim was submitted, the insurance company denied it. Lori is appealing that decision.

While the fitting process takes about four days, actual time at Ortho Rehab Design is limited to a few hours each day. Lori blogged about her experience at a site aptly titled “Brace Yourself.”

On Day One, Lori met Ortho Rehab Design owner Mitch Warner. Warner asked questions about her balance and gait and tested her muscle strength. He then videotaped her walking without braces to help determine what corrections the Helios would need to make, and made a mold of her legs for the plastic test braces.

The test braces were ready on Day Two. Lori tried them on and Warner worked with her to achieve the best fit. Day Three was a day off from Ortho Rehab while the Helios were actually manufactured. Lori and Jerry drove five hours to visit the Grand Canyon.

On Day Four the Helios were ready, but Lori was in for a surprise. “I thought I’d get the Helios and be off and running through the streets of Las Vegas,” she confesses, “but I had to adjust to them. It was a little difficult. They go higher on the leg than my old AFOs and a front part goes around the bottom of the knee. When I walked it felt like I had to use different muscles to learn to walk in them.” Warner advised her to wear the Helios for one hour the first day and increase the time over a few weeks.

That first night, after just one hour of wear, Lori experienced significant hip pain. “I realized I was using different muscles.” Warner told her the hips would adjust and that it can take up to three months to fully adapt. Lori also found she needed a larger shoe size to accommodate the devices. “The first two weeks were the hardest, but after a period of adjustment of a few weeks they felt much better.”

Three months later, Lori is very happy with the results. “I used to feel like I was losing my balance, especially in crowds. I would always touch someone or the wall because I was afraid of falling. Now, when I wear the Helios, I don’t feel like that anymore.” The braces have had a positive effect beyond balance as well. “I can walk about 1.5 miles now. Before, I would look for the shortest route, but now I actually feel like walking,” Lori says. “The Helios make me feel like doing more things.”