Finding the Right Orthosis: A Journey of Hope and Resilience

At the advice of her doctor, Ecklund purchased a lightweight ankle-foot orthosis (AFO) that supported her foot by lifting it whenever she took a step. Consisting of a cuff that wrapped around her ankle, a plastic inlay that attached to the top of her shoe between the tongue and laces, and a connective strap in between them, it worked well for nearly 2 years until she began searching for an upgrade.Several years and devices later, Ecklund’s neurologist finally referred her to an orthotist — a professional who makes and fits custom orthoses. Unfortunately, the new device hurt more than helped. Made of carbon fiber, its main feature was a hard foot plate that was flat instead of arched, which forced Ecklund to change her gait. Instead of walking heel to toe, she had to laboriously lift and lower her foot as if she were stomping.

Orthoses Explained

Ecklund has tried 20 different orthoses to support her foot, ankle and knee.

Orthoses — also known as orthotics, splints or braces — are external devices that support the body to help it move. Although they can be worn anywhere, they’re especially common on the feet, ankles and knees.“If you want to move better, disease-modifying therapies will not do that. So, we have to use the environment and interventions that encourage use of the body,” explains occupational therapist Kathy Zackowski, PhD, associate vice president of research at the National Multiple Sclerosis Society.“By providing outside support, orthotics allow you to use the strength and sensory systems you have and compensate for deficiencies that are happening because of illness or injury.”Orthoses don’t supplant the body. Rather, they supplement it.“A person doesn’t lose strength because they’re using an orthotic. That’s a common misconception,” says physical therapist Nora Fritz, PhD, an associate professor at Wayne State University School of Medicine. “The orthotic doesn’t take over. It’s a tool you can use to engage with your environment and participate in your community in a safe way.”

AFOs, for example, typically encompass the foot, ankle and lower leg. Designed to support the foot and ankle, they might go inside one’s shoe or attach to the outside of it. They can be rigid or flexible and might be made from a variety of materials, from neoprene to plastic to carbon fiber.There also are knee orthoses (KOs) that stabilize the knee; knee-ankle-foot orthoses (KAFOs) that begin at the foot and go all the way to the groin; hip-knee-ankle-foot orthoses (HKAFOs) that support the hips and torso with a pelvic band; and functional electric stimulation (FES) devices that control muscles by using electrodes to stimulate associated nerve pathways.“There are many different types of orthoses, and they’re used for a wide variety of purposes,” notes physical therapist Randy Karim, a clinical rehab specialist at the Cleveland Clinic’s Mellen Center for Multiple Sclerosis, who says people may rely on orthoses to improve independence, enhance quality of life, support daily living activities, increase mobility or reduce pain. “It all depends on what difficulties or impairments a particular person may be dealing with.”

Fighting Foot Drop and Fatigue

Among people with MS, the most common reasons for using orthoses are weakness and spasticity, which can be a consequence of the demyelination that occurs in MS. When nerves are damaged, they can fail to communicate properly with muscles. Often, that manifests as foot drop.“With foot drop, the foot is not clearing when you take a step, so you end up catching your toes. That can be painful and increase the risk of falling,” Karim says. “By stopping the foot from dropping, an AFO can help with pain and reduce the risk of falls. But it also can make a person’s gait much more efficient, which can help significantly with fatigue because it reduces the energy a person expends clearing their foot.”Weakness in people with MS also can manifest in the form of knee instability, leading to hyperextended knees like in Ecklund’s case. “People might not trust that their knee will hold when they stand on it, so they’ll compensate by hyperextending their knee,” Fritz says. “They may not even realize they’re doing it, but over time, that can damage the internal structures of the knee. Orthoses that push the tibia forward and minimize hyperextension may be helpful and provide stability.”Orthoses might also help people who struggle with spasticity and sensory loss, according to Zackowski.“And, of course, people with MS are not immune to other issues,” adds Jennifer Keller, a physical therapist at the Kennedy Krieger Institute and an assistant professor of physical medicine and rehabilitation at Johns Hopkins Medicine. “So, if you have a bad knee from playing sports as a kid or a hip problem, that could be a factor as well.”

Beware of Barriers

If you’re experiencing pain or sustained changes in mobility — if you’re not walking as fast as you used to, for example, or if you’re winded by routine tasks like grocery shopping — Fritz says it might be time to ask a physical therapist about orthotics.Before you do, however, it’s important to recognize that orthoses can have serious limitations.While not everyone shares her experience, pain and discomfort are Ecklund’s biggest complaints. Although she loves hiking, she now avoids it because she can’t bear the worried looks from fellow hikers who blush at the sight of her socks, which turn red with blood when the Velcro from her braces cuts her skin.Fashion and finances are other concerns. If your orthosis goes inside your shoe, for instance, you may need to wear a larger size on one foot — which requires two pairs of the same shoe since retailers rarely sell mismatched pairs.Pants can be as problematic as shoes.“I used to wear jeans a lot. I had 20 pairs in every color. But when I got my first knee brace, I couldn’t get jeans on to save my life,” says Ecklund, who donated all but one pair of jeans and now almost exclusively wears convertible hiking pants because they’re the only pants that are roomy enough for braces. Even sweatpants are off limits because the Velcro on her braces sticks to the lining.Marie Vaillant, diagnosed in 1996, can relate. Although she struggles with foot drop as result of her MS, she prefers using a walker or wheelchair to using orthoses. “I have a brace that goes on the bottom of my foot and up the back of my leg, and it straps around my calf. But it doesn’t fit under most of my clothes,” says Vaillant, 68, of Ottawa, Ontario, Canada. “The only time it really works is in the summer with shorts and running shoes, and I don’t want to wear shorts and running shoes all the time.”In that way, orthoses can be as much about how you feel as they are about how you move. “The brace I have is not painful or uncomfortable, per se. It’s just very limiting,” Vaillant continues. “I have friends who wear braces for foot drop and are perfectly fine with it, but you have to be comfortable. Not just physically, but emotionally and psychologically, too. I have a very sleek and stylish walker, and that’s what feels right to me.”For people who decide against using orthoses, alternatives might include not only assistive devices like canes, walkers, scooters and wheelchairs, but also kinesiology taping and physical therapy. The former uses thin, flexible tape to support and stabilize joints and muscles while the latter uses exercise and stretching to naturally improve strength, balance and range of motion.

Professional Help

Clearly, orthoses can present challenges. In many cases, however, those can be overcome, according to Keller, who says there are many different materials, designs and modifications one can experiment with in order to find brace bliss. “There’s a wide variety of really specific technical changes that can be made to make braces more effective and efficient for each individual,” she says.The odds of orthotic success are best when one works with a professional, adds Karim, who says your first stop should be a physical therapist who can complete a thorough examination and assess your gait. “There isn’t a cookie-cutter approach to orthotics or a certain recipe you can follow. Each individual’s abilities and goals must be considered,” he says.A physical therapist who has experience with MS and orthotics is ideal. In small towns or rural areas where that expertise doesn’t exist, an occupational therapist can be a good alternative, as occupational therapists get some training in the use of orthotics, according to Zackowski. In either case, your therapist typically will conduct an evaluation, take measurements and assess the need for an orthotic, and ultimately engage an orthotist to help them design and fabricate a bespoke device.It’s important to articulate your goals, so your providers know what your challenges are. “You need to tell your therapist what you want,” Zackowski says. “Don’t just say, ‘I want an orthotic because I’m having trouble walking.’ Try to think about what it is you really want to be able to do. Maybe you want to be able to go for a walk outside with your partner, for example. I had one patient who just wanted to be able to walk at her son’s baseball game. Her son was so embarrassed that she used a scooter, so she wanted to be able to walk to the bleachers and sit down. Try to decide what it is you want to be better at, because that will help determine what intervention will be most effective for you.”Cost might also be a factor, according to Karim, who says prices for orthoses can vary. An off-the-shelf brace typically costs less than $100, for example, while a custom model might run anywhere from $500 to several thousand dollars. FES devices, meanwhile, can cost from $2,000 on the low end to $12,000 on the high end, he says.“Obtaining the optimal AFO can depend on the patient’s access to good-quality insurance, but orthoses are usually covered by insurance in part or in full as long as they’re medically necessary,” notes Karim, who says physicians, physical therapists and orthotists can work together to document for insurance companies why a given orthosis is needed. “Most insurance companies will cover a custom plastic or carbon fiber brace for adults once every 2 to 5 years. Functional electrical stimulation devices can be a nice, alternative option. However, because these types of devices tend to be more expensive, they are generally more difficult to obtain, though there are some insurance companies that cover them.”

Orthoses of the Future

Technology could make the next generation of orthoses more advantageous. Ecklund, for example, is excited about 3D printing. Combined with motion analysis, artificial intelligence (AI) and generative design, additive manufacturing could unlock new materials and new feats of engineering, resulting in braces that are stronger but also lighter and slimmer.AI also could revolutionize FES, according to Karim, who says future devices will use machine learning algorithms to determine exactly when, where and how to stimulate muscles, making FES simultaneously more comfortable and more effective.Even robotics could help. As early as 2014, for example, researchers at Carnegie Mellon University were experimenting with a “soft, wearable device that mimics the muscles, tendons and ligaments of the lower leg.” A decade later, work continues to develop soft robotic ankle-foot orthoses (SR-AFOs) that use electronic sensors and mechanical actuators to enhance the ankle’s natural motions.And yet, there may never be a “perfect” orthosis. For that reason, it’s important to view orthotics as a means to an end.“In my clinical experience, I recognize that it is not an easy decision for individuals to wear orthoses,” Karim concludes. “Therefore, what I ultimately would like to convey is that orthoses can be a tool of freedom. If you view orthoses in this manner — as something that can improve your quality of life, increase your accessibility and help you experience good things in life — then it can become a lot easier to accept them.”

Finding the Right Orthosis: A Journey of Hope and Resilience

Orthoses Explained

Fighting Foot Drop and Fatigue

Beware of Barriers

Professional Help

Orthoses of the Future

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