A Stroke Can Feel Like the Ultimate Thief of Control and Independence – You Can Find Them Again

Four stories of individuals who regained physical function & emotional healing post-stroke through the MyoPro

By: Ashley Jones

“I miss folding my laundry.”

This is one of many simple, everyday tasks that individuals like Jessica, 34, who struggle with mobility and function of their limbs, miss.

Holding a piece of cloth. Feeling it in your fingers. Folding it neatly and putting it away. At that point, folding laundry is no longer defined as a chore. It’s defined as ability. As independence.

As humans, we go through our entire lives working to identify and rely on ourselves – through language, thought, action and experience. As we age, we begin to find comfort in who we are and what we’re capable of – our abilities, our memories, our intentions, our perceptions, our self-reliance. Who we are is completely stored in the brain, which acts like an organized attic of keepsakes from our past and present that inform our future.

But the human brain is much more complex than that. It’s an organ made up of more than 100 billion nerves that communicate trillions of connections. It controls our motor function, sensory information, emotions, cognition and more – sending signals through the body like a mailman in the busiest post office you can imagine.

Often, when we think of an injury to the brain, we automatically think of a physically traumatic event – a car crash, a motorcycle accident, a high-impact sporting injury. However, sometimes it’s not external forces, but internal irregularities that can affect the brain and its functions.

As defined by the American Stroke Association, a stroke “occurs when arteries supplying blood to the brain are either blocked (by plaque or a blood clot) or burst. As a result, part of the brain does not get the blood it needs.” When the brain lacks the blood supply it requires, parts of the brain that are affected cease to continue working correctly.

Depending on the amount of damage the brain experiences and which part of the brain is affected, individuals may face problems with their speech, vision, cognition, memory and overall control of certain parts of their bodies after suffering a stroke. Both right- and left-brain strokes can result in full or partial paralysis on one side of the body, known as hemiplegia.

For those who experience hemiplegia following a stroke, often they are left without the use of one of their arms. For mothers and fathers, it can mean not being able to care for your children in the capacity you once were capable. For those who were serving or served our country, it can lead to the loss of pride and physical strength you once exhibited. For musicians, it can mean losing your passion. For anyone, it’s much more than just a physical loss – it can feel like a loss of your sense of self, the self you’ve been working so hard to build your entire life. Physical impairment is directly related to the way we perceive ourselves, and healing both physically and emotionally all starts with the mind.

That’s where Myomo, a medical robotics company based in Cambridge, MA, and the MyoPro powered brace comes in.

MyoPro is the only orthosis that, sensing a patient’s own neurological signals through sensors on the surface of the skin, may restore their ability to use their arms and hands. Many users can feed and dress themselves, live independently and reduce their cost of care. Some have even returned to work.

If you’ve suffered a stroke that has left you with an impaired upper limb, the MyoPro may help!

Here are the stories of four MyoPro users who have found success with the device, and subsequently found themselves again.

A Strong-Willed Veteran Fights to Regain His Independence – Meet JJ

In December 2013, JJ, a Vietnam Veteran, suffered a stroke that affected the left side of his body. He was left unable to walk and unable to use his left arm. A Marine Corps & Navy veteran, JJ expressed his initial reaction:

“I felt helpless, like I couldn’t do for myself anymore. If I’m being honest…it really kind of pissed me off.”

As a man who once served in the Marine Corps, a branch with a reputation for having some of the toughest physical training requirements, JJ’s frustrations with his physical limitations were understandable.

“You’re used to being independent and confident in your abilities and then all of a sudden, you can’t do the things you once could. And people offer to help, but that isn’t always necessarily a benefit [mentally].”

Despite his frustrations, JJ tried not to let his limitations get to him. He searched for alternatives that could help, only to be let down each time something didn’t work. Then, he found the MyoPro through Veterans Affairs (VA), becoming the first veteran to use the powered arm and hand orthosis in April of 2014.

After about a year of using the MyoPro diligently, JJ’s arm demonstrated significant progress in improved function and muscle tone. In addition to these physical milestones, the use of his arm again and being able to conduct tasks like driving or mowing the lawn drastically improved his mental outlook.

“It’s [MyoPro] brought me back to 100% mentally. It made me rely on myself again, because you’re not relying on the device solely. You have to depend on yourself to make it work. I feel like myself again and that’s incomparable. I feel like ‘I still got it.’”

Six years after finding the MyoPro, JJ has regained enough function and strength through the device that he no longer needs to use it as often or rely on it as much as he once did. After experiencing so much success, JJ has become an advocate for the device for those who have undergone circumstances similar to his own.

“My progress would be so delayed without the MyoPro. I’ve seen others who have suffered a stroke and don’t have the advantage of the device and their arm is still not functional. They still have no control. It’s atrophied and limp. That’s a security risk to your person, you know? It makes you vulnerable. When you use the device, you’re actively exercising those muscles – it’s like constant physical therapy.”

“I want people to know there is help out there. And that help is the MyoPro.”

Seven Strokes in One Year Didn’t Take Away Her Drive – Meet Gayle

In 2017, Gayle had a more difficult year than most. At the age of 50, she suffered her first stroke which left her dominant arm paralyzed which subsequently left her out of work.

Little did Gayle know that in that same year, she would suffer six more strokes before being officially diagnosed with AFib (atrial fibrillation), a condition defined by the American Heart Association as “a quivering or irregular heartbeat that can lead to blood clots, stroke, heart failure and other heart-related complications.”

Although she was luckily able to begin immediate treatment for her AFib, Gayle was still left with her arm paralyzed and was sent home with little information, direction or assistance in terms of what she could do to cope with or reverse the effects.

“I didn’t know anything existed that could help. Following my stroke, they sent me home with no action plan moving forward. I was left to my own devices – I felt like ‘well, I’m stuck like this.’”

Not receiving vital information regarding treatment and next steps for peripheral paralysis is an unfortunate reality for many. But Gayle did her own research and ultimately found Myomo through Facebook. After further digging and communication, the folks at Myomo came down to her home state of Texas to have her try on the MyoPro in October 2019.

“It was weird putting the device on for the first time. My muscles began spasming immediately. That was the first sensation I’d felt in that arm for quite some time. I can’t imagine life without it now. I’m starting to feel and move my arm in ways I haven’t for over three years.”

Finding Strength and Recognizing His Abilities Again – Meet Dave

In February 2011, Dave was 61 years old when he suffered a stroke which left the right side of his body paralyzed.

As a mechanic, Dave relied heavily on having both arms for work. Following his stroke, he found it difficult adapting to not only working with one hand, but in adapting typical, everyday tasks as well.

As veteran of the Army National Guard, Dave was in a stationary arm study at the Veterans Affairs in Maryland in 2018 when they told him he might be a good MyoPro candidate. Dave had never heard of Myomo or the MyoPro prior, but was willing to give it a try.

“It was very interesting when I first tried the MyoPro on. I was able to move my elbow and my fingers which at the time was extremely limited without the device. It didn’t take me long to get acclimated. The more you use it, the better.”

Two years later, Dave can hold a glass and has grip strength again even without the MyoPro as a result of the exercise his muscles get from using the device, which helps him as he passes time in his woodshop.

“It’s amazing because it’s almost like it’s [the MyoPro] is retraining your brain to do these functions again. You know, it might not be a cure all, but you start to feel better about yourself because you realize that you have the capability to improve.”

While stroke victims’ experiences and aftermath may vary, the common link is that there is help out there and no matter where one may be in their recovery journey, the MyoPro can be that source.

“I can’t imagine life without it. I really enjoy the device and never thought that I’d ever have anything like it available to me. I was in the right spot at the right time and spoke to the right people. If we can help others with this device, then let’s do it.”

Life After a Stroke at 26 Years Old – Meet Jessica

At 26 years old, you’re invincible and the world is at your fingertips. But in September 2012, Jessica suffered a severe, life-altering stroke that left her with complete paralysis on her right side, the need for a craniotomy and aphasia (the loss of ability to understand or express speech, caused by brain damage).

Jessica, a naturally bubbly and outgoing person in her own right, was a realtor prior to her stroke and loved her job. After attempting to go back to work following her stroke, she found it difficult to communicate with people which was frustrating to the once talkative, sociable young woman.

In regard to the paralysis of her arm, it was interacting with people again where she found some of the most difficulty coping.

“I noticed a lot of people stare at my arm because it would often be contracted in an odd position. As a people-person it was really difficult to cope with this new perception.”

Despite these changes and new challenges at such a young age, Jessica remained strong-willed.

“I want to be able to do anything. I want to be independent. I’m not like most others who have experienced a stroke. I have a long life ahead of me. I have big plans and goals for my life still.”

And, so, Jessica set out on a journey to find anything that could offer her a little more independence. She tried every “robotic, tech-y thing available” to no success.

Until she saw an ad for the MyoPro.

“Trying it on for the first time was awesome. I hadn’t moved my arm and fingers for over four years at that point.”

Jessica proved to be a natural with the device and became acclimated very quickly. She uses the device in her new job at bakery where she can now hold baking sheets and mixing bowls with both hands. But more importantly, she can hold the most precious things in her life.

“I can hold my kids’ hands. I have two children. And now, one can hold my left hand and one can hold my right.”

In addition to strength and function and many of the usual physical benefits that users attribute directly to the MyoPro, it’s perhaps the mental exercise Jessica enjoys most.

“You might not think it, but the MyoPro helps me with my speech. People aren’t staring at my arm because it’s in a weird position anymore, but because it’s in a cool brace. They ask questions. They want to know more about it, so I get to have conversations with so many people where I get to explain what it is.”

Like many, Jessica finds it difficult in imagining life without the MyoPro now, as it was the first positive “yes” she had heard in her recovery journey. When asked what she would want the individuals at Myomo who continue to develop the capabilities of the device to know, she paused thoughtfully:

“Don’t stop. You changed my life.”

And even though it’s still difficult, she’s starting to fold her laundry.

“You don’t know what you have until it’s gone.”

This adage is something we’ve all heard at some point - by a parent, a family member, a friend -at some point in our lives. Some people may think of materialistic loss or the loss of a loved one. Often, it’s not the thought of your independence that can be lost.

However, this is the unfortunate reality for many victims of a stroke.

Myomo offers those suffering from a paralyzed or weakened arm caused by stroke, nerve injury or other neurological disease or injury a free, safe online screening to determine if MyoPro might work for them. Registration is available here.

About the author: Ashley Jones is a copywriter and freelance writer in the Pittsburgh, PA area. In February 2018, she sustained a brachial plexus injury to her right arm as a result of a car accident that left her arm partially paralyzed. While not a MyoPro user (she maintained hand and finger movement and regained her bicep through a nerve transfer), she is humbled by the difference the device has made, and continues to make, in the lives of those living with peripheral paralysis.