Multiple sclerosis patient Tania Bentley is determined to walk again.
The Multiple Sclerosis Comprehensive Care Center empowers patients to reach their goals.
Symptoms of multiple sclerosis usually come on slowly, but for Emmy Award-winning public television producer Tania Bentley, 33, of Clifton, they came on fast. She walked into an Emergency Department with severe pain one day in January 2017, and three days later, she could no longer walk or even stand. “That was the last time I walked independently,” she says.
Today, Tania feels positive about her prospects for recovery. But she says that would not be possible without the efforts of the experts at the Multiple Sclerosis Comprehensive Care Center at Saint Barnabas Medical Center (SBMC).
A PAINFUL JOURNEY
Tania’s Emergency Department visit turned into a three-month blur of hospital stays, pain and debilitation. With her husband, Rich, she went from one specialist to the next, trying to get answers. “My condition deteriorated alarmingly quickly,” she says.
Then they heard about an internationally renowned MS specialist, Andrew Sylvester, MD, Medical Director of the Multiple Sclerosis Comprehensive Care Center and a member of RWJBarnabas Health medical group. “We rushed to get onto his calendar,” she says. “That decision was the turning point in helping me to start claiming my life back.”
At the initial appointment, Dr. Sylvester spent nearly two hours with Tania and Rich. That’s typical of the Center’s approach, says Matthew Tremblay, MD, a neurologist and MS specialist at SBMC who is also a member of the RWJBarnabas Health medical group.
“Because symptoms of MS are so complex and wide-ranging, we feel that longer conversations are the only way for a specialist to learn how the disease impacts each patient, and then develop a plan of care,” he explains.
TREATING THE WHOLE PATIENT
At the Center, creating a plan of care and managing symptoms is as important as treating the disease. “Our focus is always on strategies to give patients more function—like being able to walk again,” says Dr. Tremblay.
In addition to two full-time neurologists, Center patients have access to pain management, physical and other therapies, radiology care and more. Depending on symptoms and goals, a patient’s care could involve treatment to improve walking, bladder control, fatigue, insomnia, mood and other symptoms. New and advanced medications are provided. “We’re able to offer more and more medicines that are very effective and have much fewer side effects than in years past,” says Dr. Tremblay.
“I’m beyond grateful to have found experts who actively work together to help me navigate my ‘new normal’ with MS,” Tania says.
NEXT STEPS
For Tania, the goal of walking again is a major driver. Early on, she decided that she would captain a team for a fundraising walk for the National MS Society. She worked for over a year to prepare for the April 2018 event.
“My husband and I practiced taking a few steps with my walker daily, and my physical therapists worked tirelessly with me, too,” she recalls.
On the day of the walk, more than 100 friends old and new showed up in support. She was named “most inspirational walker” for that event and was set to cut the ribbon at the starting line.
“Rich wheeled me to the front of the line, and helped me stand,” she says. “Then, I did it! I took a couple of steps using my walker—by myself!” She turned toward the loud cheering and applause from the crowd gathered there to support her. “I’ll never forget that moment,” she says.
Still, some days are tough, as when crippling fatigue prevents her from lifting her head from her pillow. But during those times, she holds on to each milestone that she’s achieved since those dark days of early 2017.
“Climbing one stair seems like the hardest thing in the world right now,” she says. “It’s become my mountain. But the specialists at the MS Center have empowered me to keep fighting and to keep trying. Because of that, the possibilities seem endless for me.”