Creating Community

Terry and Tamara are identical twins born in Florida in 1968. They have always had a strong bond and enjoyed playing tennis, swimming, riding bikes, and ice skating together. In their youth, they experienced muscle aches and fatigue, but their doctors attributed it to growing pains. As they grew older, Terry and Tamara’s symptoms worsened on opposite sides of their bodies.

“We are what’s called mirror twins,” Terry explains. “So, we are mirror images of each other. I’m a lefty, and she’s a righty, so if we held up our dominant hands, it would be like looking in a mirror. That’s how our symptoms presented, too.” 

It wasn’t until years later that Terry and Tamara would learn the cause of their symptoms – multiple sclerosis (MS). The emotional distress of their mother’s passing took a toll on their bodies, resulting in constant pain, visual changes, worsening fatigue, and body tingling. Still, it wasn’t until years later that Terry was diagnosed at 25, and Tamara was diagnosed at 30.

While the diagnosis was difficult, Terry and Tamara took a page from their mother’s book. Diagnosed at 33 with an aggressive form of cancer, their mother passed along her strength to her daughters.

“We were lucky to still be with her for 11 more years after her diagnosis,” Terry says. “She taught us to be resilient. She woke up every day with a smile on her face, so we woke up every day with a smile on our faces. That resiliency has gotten us a long way.”

When they were diagnosed, the twins were living across the country from one another; Tamara in San Francisco, California, and Terry in Atlanta, Georgia. Her primary care physician referred Terry to Shepherd Center’s Andrew C. Carlos Multiple Sclerosis Institute.

“That was my first experience of an MS center,” she says. “I remember being amazed because the nurse practitioner and doctor really listened. That’s part of what makes Shepherd so special — people really listen. It’s not like anywhere else.”

From there, Terry began taking part in Beyond Therapy®, an activity-based therapy program that aims to help people with a variety of neurological disorders improve their lifelong health and minimize secondary complications.

“I love Beyond Therapy,” Terry says. “I’m paralyzed from the waist down, so I don’t get upright often, but the Lokomat lets me get up and walk on a treadmill. I’m so grateful for that time and for the therapists there. They push you in such a kind way and always pivot based on where you are that day.”

While Terry continues her therapy with Shepherd Center in Atlanta, she stays close to her sister and the MS community through their website at twinscoast2coast.com and their social media channels. There, the twins create a safe space to share the stories, celebrations, and struggles of living with MS and advocate for people with the disease. They both volunteer with the Multiple Sclerosis Association of America, and Terry is a member of the Board of Trustees for the Georgia Multiple Sclerosis Society.

“At Twins Coast to Coast, our motto is to motivate, inspire, and educate,” says Terry. “We’ve lived with MS for so long that we can give back and give our experiences, and it means everything to be able to help someone else.”

 Written by Lindsey Rieben