In the first year after being diagnosed with multiple sclerosis (MS) in 1997, Ann Borsellino basically withdrew from life, rarely even leaving her bedroom. Knowing little about the disease, she assumed its relapses would soon rob her of any control over her body.
They didn’t, and now Borsellino is involved with a program that helps to educate other MS patients about their disease and care.
“Looking back, I would’ve given my eye teeth to have had someone with MS to talk to,” said Borsellino, 59. “I wish I knew then that depression was a chemical symptom of MS. But we didn’t have the internet, and I felt very isolated.”
Called MS Path 2 Care, the free program helps patients learn to be more active participants in their healthcare. It’s a collaboration between the Colorado-based nonprofit Can Do MS and Sanofi Genzyme, which markets MS treatments such as Aubagio (teriflunomide) and Lemtrada (alemtuzumab).
The Society for Participatory Medicine, a nonprofit that focuses on partnerships between patients and healthcare professionals, helped in developing the program.
MS Path 2 Care, launched in late 2017, brings together the entire MS community — patients, their families, healthcare providers, and national advocacy groups. Its primary aim is shared decision-making between patients, their suppport partners, and their healthcare team, with the goal of developing enduring bonds between patients and care participants.
The program’s website features four educational modules, each with videos highlighting the stories and perspectives of those affected by MS. They include “Understanding Your Healthcare Team,” “Partnering With Your Healthcare Team,” “Navigating the Healthcare System,” and “Strengthening Your Support Partnership.”
“At Can Do MS, we believe that it is critical for people with MS to be proactive and engaged in managing their own care,” Anne Gilbert, Can Do MS director of programs, said in a press release. “That’s why we are so excited by the launch of MS Path 2 Care, which provides information and tools that can help address a wide range of challenges.”
Stephanie Buxhoeveden, co-director of Neurology Associates in Fredericksburg, Virginia, helped develop the modules. Diagnosed in 2011 at age 25 while working as a neurosurgical intensive care unit nurse, Buxhoeveden’s life path changed when she quickly realized she could use her experience as someone living with the disease to have a positive effect on the MS community. She now works as a nurse practitioner and specializes in MS care.
Her first symptoms were met with disbelief, she said. Being athletic, Buxhoeveden initially chalked foot numbness up to injury. Then vision problems started, and difficulties with her right hand. A year after her diagnosis, she was using a cane and wheelchair. Before settling on Ocrevus (ocrelizumab, marketed by Genentech), she tried six different medications.
“After diagnosis, I picked up every textbook. I went on a fact-finding mission,” said Buxhoeveden, 31, who still uses a cane on occasional bad days and is working on a doctorate in nursing. “I can help people navigate through that. I know how confusing it is.”
She said that while the goal of treatment remains focused on preventing relapses more than undoing damage, increasing options are becoming available. Half of the 14 therapies now on the market were developed in the last five years, she said.
“This program improves the quality of life by showing people what resources are out there,” said Buxhoeveden, who appears in multiple videos. “People aren’t aware that there are people out there who can help with those things.”
She believes it’s critical that people living with MS be proactive in their care and build a strong support system. “The amount of information is overwhelming, so you need to optimize your healthcare,” she said. “When you’re diagnosed with MS, it’s a lifelong thing. This program empowers you to take ownership and be a participant in your care, to be at your best throughout your journey.”
The program is governed by a board of directors comprised of business professionals and MS advocates, and staffed by professionals in the MS field.
Other Can Do MS programs include Can Do On Demand, an interactive online education course designed to help family members touched by MS improve their overall quality of life and maintain healthy lifestyles.
That’s important, said Buxhoeveden, who is married: “MS affects everyone around you. And support partners don’t usually take care of themselves.”
Programs also include “Take Charge,” which incorporates MS education and interactive activities over a weekend in a small-group setting, and “Jumpstart” — a one-day interactive educational program for patients and support partners focusing on co-managing MS. A pilot wellness program called “Live Fully, Live Well,” which covers topics affecting the whole family, is being launched in 15 cities as well.
Borsellino, a retired high school teacher who lives with with her support partner, Karen, in Yorktown, New York, said that in addition to finding the right medicine, MS patients should consider mental health counseling. “Karen said she needed to talk to somebody as much as I did,” she said, adding that MS Path 2 Care emphasizes a comprehensive, holistic approach.
Borsellino and her partner appear in a program video addressing the physical, cognitive, and emotional challenges of MS that also includes clinical psychologist Rosalind Kalb, PhD, who offers advice on fostering a strong partnership. Kalb is a consultant with the National Multiple Sclerosis Society, helping to create online educational resources.
“That’s why this program is so good, because it’s all internet stuff. I can find info and do chats and everything,” Borsellino said.
Borsellino, who has relapsing-remitting MS, used Copaxone (glatiramer acetate) for many years but now only takes Aubagio. Early on, she said she had bouts of optic neuritis, plus trouble writing and speaking. Now, other than continuing cognition issues, she’s doing fine.
“I’m a miracle considering when I first looked at my MRI and saw the amount of lesions on my brain and spine,” she said. “It’s a terrible disease because it’s so unpredictable. Anything can happen on any day, so I take every day as a gift.”