A Different Kind of Family

BY: ALISON PERCH

AMY , MS CONNECTIONS GROUP LEADER

On a June evening, a group of fifteen people gather around a makeshift conference table.  The atmosphere is like a family dinner, with members swapping stories and catching up on each other’s lives.

After a few minutes of lively conversation, Amy — the group’s leader—takes her seat at the head of the table.  Everyone gradually quiets down and looks in Amy’s direction.

Since 2014, Amy has been leading the MS Connections Group in Trevose, PA.  The group supports people living with MS as well as their family and caregivers.  As a social worker and case manager, Amy has previous experience running small groups.  The group in Trevose initially had three leaders, though Amy is now the sole moderator.  She leads with a sense of humor and a quiet confidence, kindly encouraging members to minimize side conversations and stay on topic.

At this particular meeting, Amy asks if anyone in the group has news to share.  Some are eager to talk about the latest MS research, while others have personal news to discuss. One woman candidly shares her fears about undergoing a new treatment. Members sit in rapt attention, asking thoughtful questions without prying.

Others have successes to share. One woman is close to tears when talking about the benefits of starting a new MS medication. Her cognitive issues and speech have improved significantly, despite some initial side effects.  Amy points out the woman’s progress, and the group applauds. “That’s wonderful,” says the man next to her.

While the tone of this conversation is positive, members sometimes confront difficult situations and negative emotions.  In these cases, Amy tries not to offer a “silver lining” right away or allow the conversation to devolve into a “pity party.” Instead, she listens carefully and allows group members to take the lead.

“If someone’s in a really hard place, I try to just be there with them, and the group tries to just be there with them. And someone else will eventually share something that happened to them that was similar,” she says.

Amy has long been an advocate for people living with disabilities, even before she received a diagnosis of MS. She emphasizes that “disabled” is not a dirty word or something to be ashamed of.
“Having to use a cane or a wheelchair isn’t giving up – on the contrary, it’s fighting back. It’s saying, ‘I’m not allowing [MS] to change my mobility; I’m not allowing this to change my life and to limit me,’” Amy explains.

This sort of attitude has helped group members find a new lease on life. “I have had people in my group say [attending meetings] is the best thing they’ve done for themselves, regarding MS, in a long time,” Amy says.

One man, who started attending meetings about a year ago, spent his life caring for family members. After receiving a diagnosis of progressive MS, he started taking better care of his physical and mental health.  He joined Amy’s group and befriended several members, some of whom showed him how to use Facebook. He then participated in an online MS support group, where he met his future wife. The two now live together in South Carolina.

Christine, who was diagnosed with MS in 2013, has also benefitted from attending support group meetings. For Christine, the group offers a place to share experiences with people who can relate to what she’s going through.

“It gives me the opportunity to discuss MS-specific things with people who understand what I’m saying.  For example, if I say to the group, ‘I’m wiped out by 3 p.m.,’ they get that… If I were to say it to my sister who does not have MS, she likens it to just needing a rest,” Christine explains.

For Amy, the group is like having “a whole new family.” Members spend time together outside of the group and frequently go out for dinner after meetings. They also have an ongoing Facebook conversation, which Amy says is crucial to maintaining the group’s close bond.  Through Facebook, members often discuss MS treatments and get support if they’re having a bad day. Amy also emails group members before each meeting, suggesting a topic for discussion and letting them know about any guest speakers.

“There’s never any substitute for a support group of any kind, not just for MS,” Amy says.  She explains that the kind of support offered by peers can’t be matched by any other form of therapy, and no other population knows MS like those who live with the disease.  

For anyone hesitant to join an MS support group, Amy recommends contacting the leader in advance to learn more and talk about any concerns.  She also encourages people to try out a group, even if they’re feeling nervous. “It’s only going to take an hour out of your life – see if you like it,” she says.
Christine agrees.  “Just do it— figure out a way to get there if you don't drive, but just do it.  You will be happy to have a sounding board and friends that understand you like no one else can,” she says.

Amy’s group meets on the second Tuesday of each month, from 6:00 p.m. to 7:30 p.m. at the LIFE St. Mary Center. There are more than 40 groups across the Greater Delaware Valley, which meet at various times and locations.  For information, visit nationalMSsociety.org/PAEgroups.

This article originally appeared in the Fall 2016 issue of MSConnection.