A place for MS patients to find expertise and community takes its next steps
For two decades, the Marilyn Hilton MS Achievement Center at UCLA has provided an empowering space for people with multiple sclerosis (MS) where they can connect with others navigating the same journey. The center’s offerings run the gamut from short-term classes on specific topics to ongoing, comprehensive wellness programs that include fitness, art therapy, nutrition, yoga, recreation, and cognitive stimulation.
“It's the best source of information and friendship that you’re going to get for handling this diagnosis that you have,” says Michele L., a member of the center who was diagnosed in 1996 at age 27.
This week, the center welcomes new executive director Lisa Guerette, who takes the reins from director Elise Herlihy. Herlihy is retiring after 20 years.
Guerette worked as an audiologist at UCLA for the past eight years. Her experience running a similar community program for pediatric hearing led her to take an interest in the work of the MS Achievement Center.
“My goal is to get the word out to more individuals that could benefit from this type of programming,” Guerette says. “We want to reach out to individuals who are younger, and we’re looking at adding more programs that fit around their work schedule and parenting schedules.”
The average age of diagnosis for MS is 29, but it’s not uncommon for people to receive a diagnosis in their early 20s or even as teenagers. While the symptoms often start out mild, it can come as a shock to be diagnosed with a chronic, progressive illness at a young age.
The center’s members not only enjoy having a safe space to share their experiences, but appreciate having access to expert information about MS.
“That’s the biggest benefit of the center, the information about everything that’s going on with your disease, and how best to operate,” Michele says.. Indeed, the center boasts an interdisciplinary team that includes an MS nurse specialist, physical and occupational therapists, a recreation therapist, a clinical exercise specialist, a dietician, a music therapist, speech pathologists, adaptive yoga instructors, and mental health professionals.
“When I was newly diagnosed, I didn’t really have any outward symptoms,” Michele recalls. “I knew about MS, I knew about Annette Funicello. I worked in a pharmacy and we had a customer who had MS. But it didn’t really set in.”
While she was still working, Michele enrolled in the 12-week Living Well with MS program, which is held on Saturdays for people who are newly diagnosed. The program aims to help participants develop strategies to manage their evolving symptoms, as well as to create personalized fitness and nutrition routines.
Other short-term programs at the center include:
- Beyond Diagnosis, a half-day program for people diagnosed within the last two years;
- CogniFitness, a 4-week program aimed at providing strategies for managing memory and cognitive challenges that can accompany MS;
- Exercise and MS, a 12-week program helping participants develop balance and body awareness, functional fitness and relaxation, and flexibility;
- Free from Falls, an 8-week fall prevention program for participants who can still walk without assistance but may be at risk for falls.
The center’s flagship program, REACH to Achieve, runs Tuesdays through Fridays from 10 am to 3 pm. While there are more than 60 people signed up for the program, the on-site capacity is limited to 10 people due to the pandemic. Pricing is set according to a sliding scale based on need.
Some of the programs are also offered via Zoom, and while there’s no substitute for in-person interaction, some of that online programming may stick around even when the pandemic is history.
“Obviously after 2020 and 2021 we have found we can provide a lot of things through telemedicine,” says Guerette. “In terms of connectivity and feeling isolated, it’s not the same as being in the room with other people. My thought is we want to try to grow both of those programs, in the sense that there are people who physically can’t make it in due to work or child care.”
Stacy Nonoguchi, the center’s recreational therapist, points to the diversity of the members as another big strength of the programming. To participate in the center’s unique programming, people come from all over southern California, and the members come from many ethnic and religious backgrounds. “It doesn’t matter your background,” she says. “Here, everyone can relate to each other.”
The Marilyn Hilton MS Achievement Center was founded in 2001 as a collaboration between the UCLA Department of Neurology and the National Multiple Sclerosis Society, with support from the Hilton Foundation.
Learn more about the center and its programs.
Caroline Seydel is the author of this article.