July is Disability Pride Month. These days I celebrate Disability as a proud stroke survivor, but it hasn’t always been that way.
I remember when I first suffered a hemorrhagic stroke at age 22, immediately following my college graduation, I was depressed and in denial. I went from running five miles a day to being unable to even lift just my torso to sit up in a wheelchair without assistance. And suddenly I couldn’t see out of my left peripherals. Or focus, or hold a conversation for more than two minutes. I remember thinking, why me? What did I do to deserve this? It took a while for me to accept and adjust to my newfound disabilities.
But I never let anyone tell me I am incapable or unworthy because I have a disability, since I know it is my strength, and my unique life experiences have afforded me a second shot at life. And this Disability Pride Month, and every month for that matter, I celebrate that.
In honor of Disability Pride Month, we sat down with Dr. Barry Singer—Director of the MS Center for Innovations in Care at Missouri Baptist—and host of the MS Living Well Podcast, to talk about the evolving landscape of MS care, inclusion, and how breakthrough technology like the Cionic Neural Sleeve is reshaping mobility for many.
Living with MS: More Than Meets the Eye
When most people think of multiple sclerosis, they think of visible mobility issues. But as Dr. Singer explained, the majority of MS symptoms are invisible. Fatigue, cognitive fog, bladder issues, nerve pain, and vision changes are just some of the “hidden” struggles MS patients navigate daily. These symptoms can be isolating and misunderstood by others who assume someone is "doing fine" just because they appear mobile.
We talked about “spoon theory”—a popular framework used in the MS and stroke communities to explain how much energy (or how few “spoons”) it takes to get through the activities of daily life with a neurological condition. Even simple tasks can require extra effort due to how MS affects the brain's wiring.
I know that for myself as a stroke survivor with neuro fatigue, every day is different. While I am usually quite energetic and upbeat, there are some days (particularly following extensive travel, or late nights and early mornings, for instance), that I am more cognitively drained and might only be able to accomplish five tasks instead of 25 in a given day, so prioritization becomes key.
A New Era in MS Treatment
The progress in MS treatments over the past few decades has been remarkable. Dr. Singer recalled the early days of self-injections and limited options, compared to today’s more advanced therapies like B-cell depleting monoclonal antibodies. These newer medications significantly reduce brain lesions and improve quality of life.
But treatment today goes beyond medication—it’s about holistic care. This includes managing symptoms like fatigue, bladder issues, and spasticity through physical therapy, lifestyle changes, and assistive technologies like the Neural Sleeve.
Disability Pride Means Inclusion—and Action
As we honor Disability Pride Month, Dr. Singer emphasized the importance of not just celebrating disability but creating inclusive, supportive environments both inside and outside of medical settings. Access to care, transportation, cultural understanding, and language support remain big barriers—especially in rural or underserved communities.
"People with disabilities have to fight for access—not just into buildings, but into conversations," Dr. Singer noted.
He stressed that building community is vital. Whether through local support groups, virtual classes like Yoga Moves MS, or online networks hosted by organizations like MSAA, connecting with others can ease the isolation that often accompanies disability.
The Neural Sleeve: Who Benefits—and Why It Matters
Dr. Singer shared his insights on who benefits most from the Cionic Neural Sleeve. Patients with mild to moderate leg weakness, especially those struggling with foot drop or weak hamstrings and quads, tend to see the greatest gains. For many, the device not only improves walking but sets off a “positive feedback loop”—more movement leads to stronger muscles, which leads to more confidence and mobility.
He also addressed skepticism: "We spend thousands on cars, but not everyone thinks to invest in their legs. The Neural Sleeve is like active therapy—it helps you move better and live better."
While insurance coverage is still a hurdle, Dr. Singer expressed hope that continued data will help change that.
Advocating for Yourself—and Your Care
The conversation ended with a powerful reminder: MS is a lifelong journey, and your relationship with your care team should reflect that. Dr. Singer encouraged patients to come to appointments prepared, communicate openly, and not be afraid to change providers if they’re not being heard.
"You have to advocate for yourself—because no one knows your body better than you do."
Want to hear the full conversation?
Check out the full episode here and don’t forget to explore Dr. Singer’s MS Living Well Podcast for deeper dives into MS care and innovation.
