MS and Mobility: How 3 Women Are Rediscovering Independence was originally published in MS News Today
Living with MS comes with a unique set of challenges. When walking becomes difficult, your life is undeniably changed. You may have a fear of falling, everyday tasks can become challenging, and your mental health can suffer as you experience changes in mobility and independence.
Here are the stories of three women who have rediscovered their independence and increased their mobility with the help of the Cionic Neural Sleeve.
MS and Mobility
Patty’s story: from walking half a city block to hiking a mile
Meet Patty Glatfelter. She is a 69-year-old retired physical therapist from Florissant, Colorado. She was diagnosed with MS in 1990. Until a few months ago, she was walking half a city block with the help of two trekking poles. Today, she is walking over a mile on trails.
In May, her neurologist told her about a new mobility device: the Cionic Neural Sleeve, a bionic clothing garment that delivers functional electrical stimulation to muscles in the leg to help improve walking. She came in for an evaluation and remembers feeling skeptical — that it was “just another gadget.”
The first time she tried it, she walked 20 feet and felt like a lightbulb was turned back on in her brain. Two days later, she traveled to Alaska and walked more than she ever could have imagined.
“We were at a beach with a lot of cobble. I stood with my trekking poles and wondered if could do it,” she said. “But I went zipping over it to the beach. My friends said Patty, slow down. I wouldn’t have been able to do it one week earlier.”
After more time with the sleeve, Patty has also increased walking distance and experiences less fatigue. “When I first started, I was walking a half a city block with two trekking poles, and now with the sleeve, I’m back up to a mile on the trails and don’t have to use any assistance at home and can go shopping and do normal things without relying on my cane or poles.”
“At my age and for the duration of time that I’ve had the disease, I didn’t expect to have that sort of experience. That I would start opening NEW doors.”
Patty is also experiencing increased endurance with the sleeve. She says her energy levels are easily 8–10 times what they were before using the sleeve.
“In all those years and all that MS and physical therapy background, this has been the number one game changer for function,” Patty says. “I have a long history of seeing what’s good and bad for patients, as well as myself. This was almost a dream come true.”
Learn more about Patty’s story and her experience with the sleeve here.
Amy’s story: improved stamina, strength, and balance
Meet Amy Salisbury. She is a 59-year-old retired kindergarten teacher. In 2012, she started experiencing foot drop due to MS.
Despite working hard in physical therapy, her mobility was still decreasing and she soon transitioned to a cane.
In the spring of 2020, she fell and fractured her ankle. As her ankle weakness persisted, her part-time cane use became full-time. She got fitted for two types of AFOs. She went from hiking 5 miles regularly to struggling to walk a third of a mile.
“I felt bad walking with anyone because I was so slow. A once enjoyable social activity became a painful example of what I just could no longer do.”
In June, she talked to her doctor about the Cionic Neural Sleeve, after reading about it in the MS Connections Magazine.
Her doctor had trailed the sleeve at Cleveland Clinic and said she’d be the perfect candidate, after previously having success with functional electrical stimulation.
“I cannot adequately describe how amazing it works for me. After just 3 days, I took a little walk and was able to look at what was around me instead of just where my next step would land. My mom, dad, kids, and partner all got teary-eyed watching me walk ‘normal’ with this device.”
Since then, Amy has traveled to Niagara Falls, where she was able to walk three miles in the heat. She attended a wedding and was able to wear a dress and heels, instead of the athletic shoes and AFO she had been wearing for the last three years.
“I didn’t have to scope out every route I might take or plan for how to get from point A to point B. It was the first time in a very very long time that I did not feel disabled. That may not sound like much, but it’s HUGE.”
Now six weeks in with the sleeve, she said it’s opened a world of possibilities. “It brings me back to me. It brings peace of mind to my family. MS is isolating and confining. I know I will be managing my MS symptoms for the rest of my life. But my magic sleeve makes all that doable.”
Megan’s story: walking further and faster than she has in years
Meet Megan Evans. She is the founder of The MS Stage and was diagnosed with MS 20 years ago. After receiving her diagnosis, she was determined to live her MS journey on her own terms.
“I knew that I could create my own destiny. I went from being a young adult who deep down had fear and was in fight or flight around the MS — even though I went gluten-free right away and did all the “right” diet, exercise, and homeopathic things for many years — to one who has fully accepted the diagnosis and stopped, as I like to call it, ‘chasing my cure’. It’s truly all about mindfulness and the mindset shift around a diagnosis. While I didn’t find a cure, I did find that there are hundreds of ways to help you live better with MS.
“Chasing my Cure did have a silver lining though. If I hadn’t been trying everything under the sun, I wouldn’t have devoured so many different techniques that have now synthesized into the program I created and now teach. I wouldn’t have learned to always be my own best advocate. Most importantly, I would not have begun a new relationship with my body and symptoms and learned how to speak with my body and be friends with her. My thirst for knowledge and new things is what led me to the Cionic Neural Sleeve to begin with.”
Since using it, she says she can go on longer walks with her dog. She hasn’t needed to use her cane to go to the grocery store or run other errands. “I went to the movies recently, and walked right in and up the stairs to my seat without a problem — no cane, only the Cionic Neural Sleeve.”
She also doesn’t have to plan as much anymore. She no longer worries as much about how she’ll get from point A to point B. “I am certain that next time I go to a concert or live outdoor venue, I won’t be concerned about the distance from the car to my seat as I was previously. I used to have to map out the shortest route and do research to figure out how far it would be for me to walk and I don’t anticipate doing that anymore.”
In addition to experiencing benefits in her daily life, the sleeve is also helping Megan on her travels. She just spent two and a half weeks in Italy and walked more than she has in years.
“I was able to walk further and faster, down cobblestone streets, long walkways, and up stairs, many times unassisted or only with the use of a cane.”
Learn more about the Cionic Neural Sleeve for MS and mobility
FDA-cleared and backed by clinical evidence, the Cionic Neural Sleeve analyzes, predicts, and augments a person’s movement. It combines the diagnostic power of a gait lab with the therapeutic power of functional electrical stimulation (FES) into a lightweight, durable garment that can be worn anywhere and operated by a smartphone. The Neural Sleeve is indicated to improve mobility for individuals living with MS.
