Since 2019, Bionic Power has been working with Dr. Thomas Bulea, a tenure track investigator in the Functional & Applied Biomechanics section of the Rehabilitation Medicine Department at the National Institutes of Health Clinical Center (NIH CC) in Bethesda, Maryland. One focus of Dr. Bulea’s research is the development of wearable smart orthoses for children with cerebral palsy, spina bifida, and muscular dystrophy.

Last June, the research team at NIH led by Dr. Bulea moved into a new phase of their current investigation of pediatric smart orthoses, specifically focusing on evaluation of the Agilik device. To date, there have been three participants: two children (< 18 years)—one with cerebral palsy (CP) and one with spina bifida – and a 25-year-old woman with CP who’s asked us to refer to her as NB. NB and her fellow participants each visited Dr. Bulea and his team 10 times over the course of several months.

Dr. Bulea and his colleagues published some early, initial findings in Frontiers in Robotics and AI. Dr. Bulea concluded that, “Gait training via a wearable device in children with cerebral palsy (CP) offers the potential to increase therapy dosage and intensity compared to current approaches.”

“If the goal is to train a new pattern of walking,” he continued, “maintaining or increasing volitional muscle activity during [the Agilik’s] use is critical from a motor learning standpoint.”

We checked in with NB to get her perspective on the study and her experience using the Agilik.

How did you first hear about the study and the Agilik?

NB: I first heard about the study from my physiatrist. She thought I fit the qualifications and might find it interesting.

Why were you interested in trying it out?

NB: If I’m being honest, my brother encouraged me. The study sounded interesting to me but I wasn’t sure about it. So, I told him about it and he joked about it sounding like Iron Man. He encouraged me to figure out exactly what the study was.

What sort of treatments or devices had you used before the Agilik?

NB: I had muscle lengthening surgery at the ages of two, four, and seven. Before the Agilik, occasionally I would receive Botox. I also have forearm crutches and a scooter that I use for long distances, as well as attending biweekly physical therapy sessions. However, the most helpful thing I went through was conductive education. Every summer for 14 years, from when I was 2 to 16 years old, I took part in a day camp called Cerebral Palsy Ability Center (it has since closed). There I learned basic life skills, like how to fall correctly, dress myself (do buttons and zippers), transfer myself into chairs of different heights, even how to do dishes as I got older, etc. Many of the life skills that I learned there I still use today and have become second nature to me.

What sort of preparation did you do beforehand? What sort of exercises—physical or mental—did you do before putting on the Agilik?

NB: I didn’t really have a specific preparation I went through for the study. I would go to bed a little earlier on the days I had a session but that’s all, really.

What were your expectations before you used it?

NB: I didn’t have specific expectations before using the brace. I wasn’t really sure what to expect so I didn’t build it up in my head.

What was your first impression using the Agilik?

NB: My first impression using the Agilik was that the brace felt a little more constricting than I was used to. I wasn’t used to having my leg braces reach higher than my knees.

What did you notice that first time? What did you notice the second time you used it?

NB: When I first used the Agilik, I didn’t notice much. There are different settings for the robot and some are more noticeable than others. [BP: This is NB’s term for the entire Agilik device. Technically, the Agilik is not a robot (as it does not automatically provide assistance and only does so when the user walks). But it’s not uncommon in the industry to refer to devices like the Agilik as “robots,” probably because of the industry acronym, RAGT: Robot-Assisted Gait Training.] The second time, however, I could feel the difference between when the robot was on and when it wasn’t. I could even tell that on certain settings I was able to bend my knees more and even walk a little faster.

What was different about it? About using the Agilik?

NB: The addition of the robot really made using the Agilik different from other leg braces I have used in the past. In my opinion, since certain settings were there to assist in walking, the Agilik differs from leg braces I’ve had in the past. My past leg braces did improve my walking and help to keep my knees from turning in on each other. However, with the Agilik I am able to go a little farther past what I can do on my own.

Was there anything surprising about it?

NB: It was a little surprising how much the different settings changed how I walked after multiple sessions. It was also a little surprising when I felt taller with the braces on, since I’m used to walking with a slight bend in my knees.

How did you feel—physically and mentally/emotionally—after you first used it?

NB: I didn’t really feel much different mentally and emotionally after first using the Agilik. However, I did feel physically tired after each session because of the walking by the time I got home.

At what point did you start to feel something different about the Agilik—as opposed to other devices or other treatments?

NB: I couldn’t tell any differences right away. It felt the same as other mobility aids or treatments. But after the first couple of sessions, I could really tell the difference.

Was it difficult to use? Or fairly easy?

NB: The Agilik was fairly easy for me to use.

Do you think it would benefit you to keep using it?

NB: Yes, I believe that continuing to use the Agilik would be beneficial for me. Even though I made progress with my mobility during the study, nearly four months after my last session it seems to have been largely short term. With continued use of the Agilik as a whole, I believe I could change that.

Do you think it was helpful? If so, how? If not, why not?

NB: Using the Agilik increased the mobility in my legs. I was able to bend my knees more, have a slightly longer stride in my step, walk a little faster, and even stand a little taller.

Would you recommend it for others?

NB: Yes, I would recommend the Agilik for other people who have physical disabilities and need help with their mobility. I believe it could bring a positive change to a lot of people.

Anything you’d like to add about the experience or about the Agilik?

NB: I believe my experience with the Agilik was a positive one. I believe that the Agilik as it stands today would be best used in addition to other treatments, mainly physical therapy, instead of on its own. I truly hope that this helps a lot of people in the future.

Our goal, obviously, is to get good people like NB up and moving. Often. To stand tall and walk strong. And the earlier—the younger—the better. Studies like these, and participants like NB, are crucial. As is their feedback. After all, our Agilik isn’t a one-size-fits-all. That’s what makes it unique: it’s an adjustable device fitted for each user. So the more feedback we get from each trial or study participant—the more we know about how each person uses it and experiences it—the more effective the Agilik will be for future users.

If you think you or someone you know would be a good candidate for a trial run of our Agilik, please don’t hesitate to contact us or the NIH directly. Or talk to your or your child’s doctor or physical therapist. Ask them about the Agilik, about clinical trials. Or just ask us. We’d love to hear from you.