Living With MS, Resilience, and Finding Strength: Alessandra’s Story

Alessandra Noto has always moved through the world with intention. A single mom to two teenagers in New York City, a fashion stylist, and an entrepreneur, she's built a life defined by creativity, energy, and showing up for the people she loves.

Along the way, a diagnosis of relapsing-remitting multiple sclerosis changed the way she thought about what it means to keep moving forward.

Alessandra was diagnosed around the age of 26. On a recent episode of Cionic's Powering Movement podcast, she explained the shock of hearing that news so young. "It was scary," she said. She had always thought of MS as something that affected older people, not someone her age.

The first signs appeared even earlier, in college, when Alessandra started experiencing blurry vision during workouts. When she was 26, tingling and numbness spread across her right side. A spinal tap confirmed what she had feared. She was given steroids, and the symptoms faded, but the weight of the diagnosis lingered.

For Alessandra, MS never defined her. "It never was my identity," she said. "I just kind of kept on going and kind of acted like I didn't really have multiple sclerosis, to be honest."

When Everything Changed

For years, MS was a quiet presence in Alessandra's life. She ran half marathons, focused on her career, and started a family. Then, during a run while on vacation in Florida, she tripped over her own feet.

"The connection between my brain and body completely shut down," she said. "I could not run." It happened fast, it was frightening.

The year after that, Alessandra developed severe Bell's palsy that led to a week-long hospital stay. About five or six years ago, drop foot set in, changing the way she walks and navigates daily life.

Living in New York City made that transition especially difficult. "If you're a New Yorker, you walk fast," she said. "You clock in a lot of miles a day. For me, it has been a major transition. I cannot walk fast anymore. I have to take my time."

She now relies more on buses and taxis to move through the city. But Alessandra has found that once she let go of the pressure to keep up with the pace around her, the city became more navigable than she expected.

On her Substack, LivingNoto, Alessandra writes: "The old map I followed for years is no longer useful. The relationship with myself needed massive repair and adjustments. Through intensive, deep relational work, I have healed parts of me that I have been at war with my entire life, but the work is never truly done."

Grief, Self-Love, and Moving Forward

One of the most honest parts of the conversation was about the grief that comes with a chronic illness diagnosis: grieving the life you thought you were going to have.

"Grief can come in all shapes and sizes," Alessandra said. "When you're diagnosed with a chronic illness, you have to grieve this life you thought you were going to have." For her, that process took a long time. She fought against it for a while before she could begin to accept what had changed.

She described moments of deep uncertainty. Wondering whether she could be taken seriously because she couldn't walk the way she used to. Questioning whether someone could love her with MS. These thoughts, she said, created noise that made everything harder.

"Can someone love me like this? Can I love myself like this? Will I be taken seriously because I can't walk like I used to?" she said. "You get in your head, and you can be your worst critic."

Over time, Alessandra has done significant inner work, from talk therapy and physical therapy to learning to say no. "We are lovable," she said. "Just because we have a chronic illness doesn't mean we're not." She paused. "We're imperfectly, perfectly human."

That shift in perspective led to what Alessandra now calls a turning point. "It's not happening to me. It's happening for me," she said. "My MS is a gift because I'm going to be able to help others."

Building a Platform for Living Well

That desire to help others led Alessandra to launch Living Noto, a platform focused on living well with chronic illness. She started it on TikTok just a few months before our conversation, and has since expanded to Instagram and Substack.

"There was nothing out there that I felt like I could turn to and it would make me feel good or give me information," she said. "A lot of the things people were talking about around MS were either making fun of it or really depressing. I wanted something beautiful."

Through Living Noto, Alessandra shares resources, interviews with her own practitioners, and content that makes wellness feel accessible. She's especially passionate about closing the gap between the people who can afford wellness support and those who can't.

"Being healthy has become such a luxury," she said. She sees Living Noto as a way to share the resources she's fortunate to have. Her physical therapist, for example, films exercises that people can follow on their own. "It's just about giving access," she said.

The Power of Support

Alessandra is also a strong believer in the healing power of community. After trying a few support groups that didn't feel like the right fit, she decided to start her own.

"I put it out in the universe," she said. "I'm going to start my own. Bring them to me." Sure enough, over the next few months, friends started reaching out. "I know somebody who was just diagnosed. Would you be willing to talk to them?"

That informal start grew into a close group of four women who meet regularly, both in person and over Zoom. Alessandra has since started a second support group through Living Noto, connecting women from across the country who follow her on TikTok.

"I think support is the best medicine, to be quite frank," she said.

Finding the Right Tools

As someone who values movement, Alessandra has been intentional about the tools she uses to stay active. She wears the Cionic Neural Sleeve when she travels, during physical therapy, and on days when she knows she'll be walking a lot.

Alessandra said she brings the Neural Sleeve with her when she travels, since travel tends to tire her out. "I'm going away with my sister for a long weekend to Copenhagen," she said. "I'm going to really rely on it to get me through those days."

She also uses the Neural Sleeve for training, doing exercises like rockers and heel touches through the Cionic app. And she's been enjoying the newer sensory feature, which helps relax muscle spasms.

"It's reprogramming myself to be like, this is an aid for you. This is helpful for you," Alessandra said. "What's nice is you can turn it off even when you're still wearing it, if your leg is getting a bit tired."

'Be Gentle With Yourself'

When asked what she'd say to listeners, Alessandra's message is simple and warm.

"Be gentle with yourself," she said. "Once we learn to be gentle with ourselves and love ourselves and wrap our arms around whatever we have, it becomes much easier and more accepting. I beat myself up far too long and it took a toll on my body. Do the work, be comfortable with who you are, and just be gentle."

You can find Alessandra on TikTok and Instagram at @LivingNoto, and on Substack.

Watch Alessandra's full interview on the Cionic podcast Powering Movement.