Bracing for Helios

Lori didn’t plan to visit casinos or nightclubs during her trip to Las Vegas, Nevada in October.  But when she boarded a 6:00 A.M. flight with her boyfriend, photographer Jerry, she was a little concerned that she was taking a gamble.

Lori, who describes herself as “the kind of person who researches everything,” almost couldn’t believe she was on her way to Ortho Rehab Designs www.ordesignslv.com/ to be fitted for a $12,000 pair of Helios® Orthosis (Helical Energy Loading Integrated Orthotic System®) 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 referring to how rare knowledge of CMT is, even among doctors.

“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 I but 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 Helios®.  Concerned about the hefty price tag, Lori had her insurance’s pre-approval for the out-of-network purchase; however, when the claim was submitted the insurance company denied it.  Lori is appealing their decision.

While it takes about four days to be fitted with Helios®, actual time spent at Ortho Rehab Design is limited to a few hours each day.  Lori blogs about her experience at http://itsmelori.tumblr.com/ which is aptly entitled “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 wearing AFOs to help determine what corrections the new Helios® would need to make.  Then Warner made a mold of Lori’s legs for use in making a set of plastic test braces.

The test braces were ready on Day Two.  Lori put them on and Warner worked with her to get the best fit.  Day Three was a day off from Ortho Rehab as that was when the Helios® were actually made.  It was sightseeing day for the couple who drove five hours to spend time at the Grand Canyon.

Day Four and the Helios® were ready, but Lori was in for a bit of 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 getting used to them.  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.”  Lori followed Warner’s advice to wear the Helios® for one hour the first day and increase time over a few weeks.

That first night, after walking for just one hour, Lori had a very hard time.  “I felt so much pain in my hips. I realized I was using different muscles.”  Warner said her hips would adjust, and it was important to build up time.  He told her it can take up to three months to get used to the Helios®.  In addition to adding time each day Lori realized she needed a larger shoe size to accommodate the Helios®.  Looking back, “the first two weeks were the hardest, but,” she says, “after a period of adjustment of a few weeks they felt much better.”

Three months later, Lori is very happy with the Helios®. “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 Helios® are  having a positive effect on more than just her balance. “I can walk about 1.5 miles now.  Today, after lunch I went for a walk. Before [the Helios®] I would look for the shortest route but now I actually feel like walking,” Lori is excited to report. “The Helios® make me feel like doing more things.”