Carrie Kellenberger

When I was diagnosed with ankylosing spondylitis in 2009, we didn’t really know what was on the horizon for us. We knew things would be difficult in the future, but we didn’t know that having missed this disease for over a decade meant that a lot of damage had already occurred that simply wasn’t fixable.

I never expected to lose my mobility, but that is what happened in July of 2014 when my body gave out on me and I could no longer move the way I used to. Year by year, I lost my energy to move and soon enough, I had an ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) diagnosis that severely limited my mobility and left me housebound.

When I learned that I might never be able to walk again, I worked harder than ever to stay on my feet, but as I was impacted further by disease progression, it became harder to do. The first time I had to use a wheelchair, I couldn’t stop wiggling and trying to lift myself up, just to prove I could do it.

There are horrible health effects to being in a wheelchair. Depression, anxiety, dealing with people in the outside world who don’t understand your disability, pain from riding in a wheelchair all day, anger, denial, sorrow, the list goes on and on. You have no idea how many things come into play when you lose the use of your legs.

We bought a wheelchair in late 2017 after we realized I had spent more time that year at home in bed than anywhere else. I lost my freedom and my independence when I lost the use of my legs. Some days I don’t have the strength to push myself, and I found myself avoiding my wheelchair completely. I refused to go out or leave my bed. Being in a wheelchair did great damage to my pride and physical sense of well-being. Losing my freedom and independence was devastating.

The day I got a call about testing out a robotic exoskeleton called “Keeogo,” was a life-changing moment for me. This exoskeleton (which, if we wanted to be technical about it is more accurately referred to as a “dermoskeleton,” but that doesn’t sound nearly as cool so we’ll stick with “exoskeleton”) is specifically designed for assisting people with mobility issues, and is made by b-temia in Canada.

For one day, I got to play Robocop (and I’m now waiting for my call back to try out the newest models in the fall!) I’d like to tell you about my experience with robotic exoskeletons and how I believe they will change lives.

How will robotic exoskeletons help people with mobility issues?

Exoskeletons are used to assist people who have limited to no ability to walk unassisted, and are currently using wheelchairs and other mobility aids to move around. They allow people to move in ways that they couldn’t before, and offer users the chance to regain abilities that they’ve lost.

Robotic exoskeletons can help people with all sorts of mobility issues, from ankylosing spondylitis and other forms of arthritis or chronic debilitating conditions, to war veterans, people who have suffered tragic accidents, and more.

With an exoskeleton, the user will have to have some function in their legs and initiate the movements, which are then supported by the device using a combination of navigational sensors, artificial intelligence, and motors. You must move in order to get Keeogo moving for you. It won’t operate with a pre-determined pattern of movement.

Exoskeletons can help people navigate their home and do household chores that they haven’t been able to do because of their mobility issues. Raking the lawn, climbing stairs, doing laundry, cooking, and many other household activities that become difficult with a person who is disabled are suddenly accessible activities again. Outside the home, it can assist people in being able to navigate a city independently.

User experience: What does it feel like to use a robotic exoskeleton?

The exoskeleton I tried is composed of two orthotic structures for each leg. Each structure includes a motorized knee joint and a free hip joint, plus a detachable utility belt. The orthotic device is connected via the belt and a permanently attached glute support. A control unit is provided for turning the system ON and OFF, as well as choosing the desired level of powered assistance. The battery is detachable and rechargeable using the charger provided.

After months of being bed bound or being in excruciating pain from being on my feet and legs, Keeogo allowed me to do some things that I hadn’t been able to do in years. Every step I have taken since 2014 has been like putting my full weight on broken glass in bare feet. I was worried how much the weight of the exoskeleton contraption would affect that.

15 pounds doesn’t seem like much, but when you have a brittle spine disease and can’t pick up anything heavier than your cat, you start to really think about weight and how it will hit your body.

Would walking in this device worsen my leg pain? Would it make my feet turn purple?

To my utter delight, my first step with Keeogo was like falling into a dream. I leaned forward and the device took most of the weight load. It was like shifting into a new world.

It was the first step I had taken in years that didn’t cause pain. As I moved forward, the sensors, the advanced artificial intelligence software system, and the motor kicked in where I needed support. I was walking pain-free!

Then I started jogging. I haven’t been able to run since May 2012 and here I was jogging around in this room with the trainers next to me. I don’t know how they felt about seeing me with a big smile on my face, but they watched me take my first pain-free steps using their device. I hope they felt as proud and as happy as I did.

Squats and lunges were easy. My robotic legs effortlessly lifted me up and down and kept me steady.

Then we tried some stairs. I avoid stairs as much as possible, but with Keeogo, I was surprised to find myself moving up those stairs quickly and easily, while my new robotic legs took all the weight off my legs for descending. After one hour in the Keeogo I felt invincible!

New users learn in the beginning that wearing an exoskeleton takes some getting used to. I found out about this the next day. Wearing the Keeogo required me to use my own muscle strength and then added to that. It takes the stress off your joints, but it also gives you a workout and so you have to ease into it. I spent 90 minutes in it, and my hips and lower back were sore for about a week. The discomfort of wearing the device though was nothing compared to the pain and stress my own body puts me through on a daily basis.

If I had to relate this discomfort to anything, it would be comparable to the pain of breaking in a new pair of shoes. Wearing the tech for short periods of time until you’ve built up your endurance to wear it day to day helps immensely.

Cool Keeogo features

Exoskeletons provide a framework of powered support that can assist the user in rehabilitation simply by putting them on their legs again. The robotic legs can also become a chair by locking into place. I could go to a concert and not have to worry about sitting down because my robotic legs provide an instant chair.

I can imagine that the developers will work on the sound the robotic legs make, but I rather liked sounding like Iron Man!

Features to work on

I could only think of two features that could be improved upon.

The powered ‘snap’ back on robotic legs could be a problem for users with osteoporosis, which is why it is imperative to work with professionals to ensure the exoskeleton fits properly.

The batteries have a long life, but they don’t last forever. Users would have to ensure their Keeogo is powered up.

Obviously, people will ask about price. My hope is that assistive device programs and insurance companies will see the physical, mental, emotional, and societal value of people being able to use these innovative devices to go back to living with full autonomy.

Changing the future

I believe that this technology can directly impact lives, communities, and workplaces by helping individuals with mobility challenges get around safely and independently.

Exoskeletons can provide users an overall physical sense of well-being, allowing freedom of movement. Many of us are moved to tears once we’ve tried it and realize that this technology will allow us to live with no mobility limitations.

Robotic exoskeletons are the wave of the future and I have no doubt they will change lives in many surprising ways.

PS: To be technical about it.

Exoskeleton is a rigid external covering for the body in some invertebrate animals, especially arthropods.

Dermoskeleton is a human-machine interface that eliminates musculoskeletal stress on the body by injecting biomechanical energy at the joints, and providing mechanical assistance to the user for restoration, maintenance, and augmentation of their biomechanical functions.

Carrie Kellenberger is a Canadian living in Taiwan who was diagnosed with ankylosing spondylitis in 2009. She is a freelance writer and health advocate for a number of arthritis associations. For more information on Carrie’s health advocacy work, please visit “My Several Worlds” at myseveralworlds.com, where she writes about her experiences with chronic illness and her day-to-day adventures.