Support Group for MS Patients Uses Spanish to Reach Out to Latinos

“How many people here have multiple sclerosis?” the support group leader asked on a recent Friday evening. A few hands went up. She asked the question again in Spanish and the crowd became a forest of hands.

As the gathering of Familia Unida went on, about 45 people sitting on plastic chairs, couches or wheelchairs listened as Irma Resendez, the group’s founder, carefully translated the words of her guest speakers. She had to raise her voice in order to be heard above the noise of a preteen dance in the next room at the Rosemead Recreation Center.

Resendez started the group, which meets monthly, after she discovered that monolingual Spanish speakers with MS often feel left out when they look for help with their illness.

Resendez, 37, could not accept that situation and went to work so that no one would feel left out. For her, there’s no such thing as a stranger. She makes an immediate connection with people, and that is what has drawn so many to her group, even those who could find support elsewhere.

“There’s no color lines here, honey,” said Karen Terry, who is black, from her wheelchair. “Irma took me under her wing. She said, ‘Wake up and walk.’ She’s just amazing. She’s so concerned about all of us. I tease her and say, ‘You’re my mentor.’ She says, ‘No, you’re my mentor.’ ”

Resendez was found to have MS when she was 29. She woke up in the middle of the night paralyzed from the waist down. After she was admitted to County-USC Medical Center, she began four months of recovery at Rancho Los Amigos Medical Center in Downey.

MS generally attacks people between 20 and 40. The symptoms include numbness of the arms and legs, visual difficulties, loss of balance and coordination, and fatigue. Studies suggest that half of MS patients will become disabled within 10 years of diagnosis and a third will be unable to walk after 30 years.

Although injectable drugs developed in the last five years may relieve the symptoms of multiple sclerosis, there is no cure. The symptoms are unpredictable, and the disease is often emotionally trying for family members as well as for those who contract it.

“We don’t know from one day to the next whether we’ll stay indoors or out, whether we’ll be able to walk to the bathroom or wear a diaper,” Resendez said. “People with kids don’t like to go to the hospital and suddenly be away from them.

“The first year I was very angry. I thought, ‘Why me?’ ” she said. “I wanted my husband, Juan, to divorce me. Because when he married me, I had no MS, no illness. I felt that I had cheated him by not being the same person.

“I started being mean to him, so that he would leave. But he said, ‘I’m not gonna go, so stop pushing me away.’ ”

One night she saw her image, in a wheelchair, reflected in the oven glass. “We had just added a second story to our home and to come home and not be able to go upstairs, it made me mad.

“After I realized that he still wanted to be with me after I was being so horrible to him, I just started changing. I said, ‘I don’t want to be miserable.’ I want my children to know that we can do whatever we can if we really try.”

When she was at Rancho Los Amigos, her doctors encouraged her to go to counseling sessions. She was the only person out of seven in her room who would go. One day she asked them why they stayed away and they told her that the sessions were all in English, which they didn’t understand.

So she interpreted the meetings for the other patients while she was in the hospital, and became a volunteer after she was discharged.

Dr. David Saperia, who is now on the board of Familia Unida, was the one person who believed she would walk again. “He told me, ‘You’re going to walk and I want the first dance.’ ”

She hadn’t seen him for a year until she went back to Rancho for physical therapy. “I had braces on my arms. . . . I couldn’t even stand,” she said. “It’s really scary when I think about it. It’s almost like I was another person.”

Most days now she is able to walk, but she sometimes uses a motorized scooter to get around.

“I think that anyone who is going through an experience like that is in great emotional distress. But those kinds of crises can change a person’s life and make them aware of things about themselves that they weren’t aware of before,” Saperia said.

“I encouraged Irma to find a niche or avenue through which she could express herself. As she spoke to me about Familia Unida, I encouraged her to develop it. Even before it started, I felt a part of it because of the personal connection I was able to make with her. It was heartwarming, exciting to do this.”

Starting Familia Unida was not Resendez’s first time helping others. She said her mother taught her and her two sisters the importance of helping others as she raised them by herself in a “loving but humble home” in Lincoln Heights.

“The teachers would sit us with other children who were immigrants from Mexico,” she said. “I would help them out because of the language barrier.”

Language is not the only thing that sets Familia Unida apart from other MS support groups. “The MS society has a lot of good resources and support group services, but for some reason, [Latinos are] not that open to just go into these meetings,” she said.

“We’re brought up to be very proud and to accept who we are and that’s the way God made us, and we go within our family for support.”

Through Familia Unida, Julie Ruiz said, she has been able to learn about new treatments for her son, Christopher Bonilla, 14. “I’ll have all my questions answered” at the meetings, Ruiz said.

The group provides more than information and emotional support. After their meetings, members take home bags of food provided by the Food Bank of Greater Los Angeles.

“We have people who have their electricity turned off, who do not have food to feed themselves,” Resendez said. “That’s when I started looking at what the group needed.” She said members also expressed concern about immigration, insurance and household expenses.

Resendez has fielded calls from as far away as Washington state and Mexico. One woman is coming from the Sacramento area. “Her goal is to be here for the next meeting. She’ll have to stay in a hotel, but that’s how important this is to her.”

The Ft. Lauderdale-based MS Foundation is funding Familia Unida’s toll-free number: (877) AYUDA-MS.

“Before I came to this group, when I was in the hospital, I didn’t know anything,” said Maria Escamilla, who is one of those who speaks only Spanish and felt isolated before she met Resendez. “Irma’s an excellent person. She’s put everything in order.”

But Resendez is reluctant to grab the spotlight. “We have a strong group of people who have worked very hard,” she said. “It’s not about one person making it. It’s a bunch of us doing it. It’s a lot of families coming together.”