Carrie Kellenberger testimony
Mobility Challenges and What An Exoskeleton Can Do For You
By 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 for us 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 2014 when my body gave out on me and I could no longer move the way I used to. Within six months, we knew it wasn't going to get better. Year by year, I lost my energy to move and soon enough, I had an ME/CFS diagnosis that severely limited my mobility and left me mostly housebound.
When I learned that my diseases might lead to me never being able to walk again, I worked harder than ever to stay on my feet, but as I was impacted further and further by disease progression, we learned that it was going to be harder to stay on my feet than we thought. The idea of never being able to walk again threw me into a funk. 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, especially for those of us who might need to spend the rest of their life 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 does great damage to your pride and physical sense of well-being. Reliance on a caregiver becomes of the utmost importance in such a short time. Losing your freedom and independence is devastating.
The day I got a call about testing out a robotic exoskeleton specifically designed for assisting people with mobility issues was life-changing.
For one day, I got to play Robocop and while I am waiting for some of my strength to come back so I can give it a go again, I'd like to tell you a little about robotic exoskeletons and how they will save and change lives for the better.
How will robotic exoskeletons help people with mobility issues?
A growing number of companies are developing exoskeleton technologies to help people with disabilities regain their mobility and autonomy.
Exoskeletons are being used to assist people who have limited to no ability to move around on their feet and are currently using wheelchairs and other mobility aids to move around. They allow people to move in ways that they couldn't with their condition, and they offer users the chance to regain abilities that they've lost.
Robotic exoskeletons will help people with all sorts of mobility issues, from Ankylosing Spondylitis and other forms of arthritis, to those with chronic debilitating conditions such as multiple sclerosis, stroke, to war veterans, to people who have suffered tragic accidents, and more.
B-Temia is a Canadian company that has designed and developed the first dermoskeleton, a sub-class of exoskeletons. It is called Keeogo short for Keep On Going. With a dermoskeleton, the user has some function in their legs and initiates the movements which are then supported by the device using a combination of navigational sensors, artificial intelligence and motors (it doesn’t operate with a pre-determined pattern of movement).
The dermoskeleton Keeogo is designed to 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 impossible with a person who is disabled are suddenly accessible activities again.
Outside the home, the dermoskeleton also assists people in being able to navigate a city without depending on someone else for assistance. It allows us to feel useful again.
The idea of working with a product that will change the lives of millions of people around the world is thrilling and exciting for physicians, therapists, and patients.
Families, clinics, and hospitals will all benefit from the enormous potential of this device. Families won't have to worry about taking their loved ones out in a wheelchair or doing all the heavy lifting required to get a wheelchair in and out of a vehicle. The beauty of Keeogo is that you can take it anywhere, and if your Keeogo needs adjustment or maintenance, there is a team trained to support you and get you moving again.
Being able to walk upright allows us to move and work again. It's almost like returning to the land of the living and it's a return to normalcy.
User Experience: What does it feel like to use a robotic dermoskeleton?
Keeogo is composed of two orthotic structures (one for each leg), each including a motorized knee joint and a free hip joint, plus a detachable utility belt. A control unit is provided for turning the system ON and OFF, as well as choosing your 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 haven't been able to do in years. Every step I have taken since 2014 has been like putting my full weight on glass in bare feet. I was worried how much the weight of the dermoskeleton would affect that.
A measly 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 go purple?
Living with Ankylosing Spondylitis
Gaining back her ability to walk
To my utter delight, my first step with Keeogo was like falling into a dream. My Keeogo team assured me all would be well. When you lean forward, the device takes off most of the weight load. I leaned forward and shifted into a new world.
It was the first step I had taken in years that didn't cause pain. Keeogo took over for me. As I moved forward, the sensors, advanced artificial intelligence software system, and motor kicked in where I needed support and it took all the weight off my legs and feet. 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. Stairs are torture for me. I avoid them 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. It was magic!
It also seeks to minimize fatigue and prevent damage to parts of the body that are injury prone. After one hour in a Keeogo dermoskeleton, I felt invincible!
For new users, be forewarned that in the beginning wearing a dermoskeleton does take some getting used to. Being on my feet with the device during my session was reflected back at me the next day. My hips and lower back felt sore, but the discomfort of wearing the device 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.
The Keeogo dermoskeleton opens up all kinds of access for users, and allows for a better quality of life and more independence. Many people beyond the disabled and elderly people could use this technology, thus the potential user list is endless. Those of us in wheelchairs are anxious to break out of our wheelchairs because it often defines how others interact with you on a day to day basis.
Just being able to walk with people will change how they react to you.
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. It also allows the user to use strength that they never had before.
I can imagine that the developers will work on the sound the robotic legs make, but I rather liked sounding like Iron Man!
Keeogo allows users to sit down in their legs. Your robotic legs become a chair by locking into place. I love this idea for so many reasons. I could go to a concert or the park and not have to worry about sitting down because my robotic legs provide an instant chair.
Features to Work On
After my trial experience, I could only think of two features that could be improved upon.
The powered 'snap' back on robotic legs could potentially be problematic for users with osteoporosis, which is why it is imperative to work with professionals trained on Keeogo to ensure the dermoskeleton fits properly.
A limited power supply means that users would have to ensure their Keeogo is powered up for use. The batteries have a long life, but they don't last forever.
Obviously, people will ask about price and it is my hope that the government assistive device programs and insurance companies will see the benefits and value of people being able to use these innovative devices to be active and fully engaged in the community, go back to work and back to living a full life with autonomy.
Keeogo will directly impact lives, communities and workplaces by helping individuals with mobility challenges get around safely and independently.
Changing The Future
Exoskeletons will allow users to have freedom and they provide an overall physical sense of well-being. In short, exoskeletons provide freedom and many of us are moved to tears once we've tried it and realized that wearing this technology will give us our life back.
Robotic exoskeletons are the way of the future and I have no doubt they will change lives in many surprising ways.
Carrie Kellenberger is a Canadian living with Ankylosing Spondylitis. She received her AS diagnosis in 2009. Carrie 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 (http://www.myseveralworlds.com/), where she writes about her experiences with chronic illness and her day to day adventures.