Robin’s MS Journey: Finding Strength Through the Unexpected

When Robin first began experiencing tingling in her hands and feet, balance issues, tightness, and cold extremities, she didn’t think much of it. The symptoms had slowly become part of her everyday life.

“I had dealt with my symptoms for so long, it was my normal,” Robin shared.

For years, she pushed through the discomfort, adapting to the challenges without realizing there could be a larger explanation behind them. But in 2022, after finally speaking with her doctor about her ongoing symptoms, she was referred to Dayton Center for Neurological Disorders for further evaluation.

An MRI would soon provide the answer: Robin had Multiple Sclerosis (MS).

Facing a New Diagnosis

Robin had heard of MS before her diagnosis, but like many people, she didn’t fully understand what it meant.

“MS had entered my mind, but I didn’t expect it,” she said.

Her husband, Randy, immediately stepped into research mode.

“Google was our friend,” Randy recalled. “One of my favorite shows, The West Wing, had a character with MS, so I knew a little about it. We listened to a lot of podcasts and did a lot of research on what to expect.”

Robin admits she had always believed vision problems were a required symptom of MS.

“I thought you had to have vision problems with MS, but I never had any of that.”

Their story highlights an important reality about MS: symptoms can vary greatly from person to person, and many signs of the disease are invisible to others.

The Challenges of Treatment

Robin’s first treatment was Tysabri. However, after testing positive for the JC virus (JCV), she could only remain on the medication for two years due to increased risks associated with long-term use.

She later transitioned to an oral medication. At the time, her disease was considered non-active, but after switching therapies, she experienced a frightening exacerbation.

She described two episodes that left her terrified.

“It’s the TV cartoon where your lips and your speech don’t sync with your brain,” Robin explained.

The episodes only lasted about a minute, but both Robin and Randy feared she may have been having a stroke.

“Two episodes that close together, we thought something was not right,” Randy said.

Robin was evaluated by her neurology team, underwent repeat imaging, and was treated with steroids for the MS exacerbation.

But the symptoms continued to escalate.

“It Was Scary”

Robin’s speech began declining more noticeably, and she started experiencing cognitive changes that affected daily life.

“I could not operate a calculator. I could not eventually write. I could not spell. It was scary!”

Eventually, one side of her body became numb. Simple tasks suddenly became overwhelming.

“I couldn’t crack an egg or curl my hair.”

At that point, Robin began speech therapy, physical therapy, and occupational therapy while also starting a new medication regimen.

“Therapy was hard. It was challenging. I had homework,” she laughed.

Still, she credits therapy with helping her regain her independence and confidence.

Today, Robin says she has improved dramatically. Her speech and numbness have significantly improved, and about a year later, she feels roughly “85% back to normal.” While she still experiences some numbness and occasional speech or cognitive delays, her progress has been remarkable.

Choosing Humor and Hope

Throughout everything, Robin and Randy have leaned heavily on humor, positivity, and family support.

Her husband often jokes with her by asking, “Is this a blonde moment or an MS moment?”

Laughter, they say, helps them navigate the difficult days.

Their family has rallied around them as well, participating in MS walks, raising awareness, and supporting Robin every step of the way.

One of the most touching symbols of Randy’s commitment is his painted fingernail.

“My pinky fingernail is orange and it’s next to my wedding ring,” Randy explained. “It’s kind of my way of saying that I pinky promised her I would take care of her for the rest of her life if she needs it, so my only goal in life now is to live one minute longer than her.”

Because of his customer service job, people frequently ask about the orange nail, giving him opportunities to raise awareness about MS and the realities of living with an invisible illness.

Living with an Invisible Illness

Robin wishes more people understood that MS is not always something you can see.

Her symptoms fluctuate daily, and even on better days, the challenges remain real.

She and Randy focus on finding inner strength and maintaining perspective.

“There is always someone out there worse than me,” Robin said. “You need to be thankful for what you have, what you are able to do, and what you can accomplish.”

For Robin, it all comes back to mindset.

“It’s all about a positive mindset. It’s not perfect every time, but you need to try to get through it. You need to have a goal, and you need to try and laugh when you can.”

Advice for the Newly Diagnosed

Robin and Randy hope their story encourages others facing a new MS diagnosis.

“Go to support meetings, reach out to as many people as you can, ask for help,” Robin advised. “It’s life, but you have to put one foot in front of the other and have faith.”

Their message is one of resilience and adaptability.

“Be adaptable. Go with the pace you feel today.”

And above all, they continue to move forward without fear.

“We are not afraid to face the future,” they said. “We may have to find a different way of doing things, but we are still going to do it and not feel sorry for ourselves.”

Their guiding belief remains simple but powerful:

“God will never give you more than you can handle.”

The whole interview can be heard on the podcast, MS Minute with DCND.