MDA support groups discuss everything from problems and triumphs to current events. Tim Conway (left), Judy Schneider, and James D'Elia are members of an MDA support group in Tucson, Ariz.

These days, support isn't something you can find only in a group.

For people served by MDA, there are many ways to connect with others who are facing similar challenges posed by neuromuscular diseases.

Whether chatting by phone, face-to-face or via the Internet, thousands of people have found friendship, empathy and problem solving by linking up with others through MDA's support systems.

But one thing is for sure: Finding such support doesn't mean you'll find a room full of tears and sob stories. Sharing emotions is a priority, but so is exchanging ideas, victories and inspiration for living with neuromuscular disease. In fact, many participants find they receive the biggest boost by giving of themselves and sharing their tips for making life easier.

This article looks at the different ways people can connect with each other via MDA, and what some get out of their participation. For more information on support systems, contact your MDA local office, or check MDA's Web site at www.mda.org.

Support Groups

Thousands of people affected by neuromuscular diseases attend more than 200 MDA-facilitated support groups nationwide. Group topics range from the disease-specific to a focus on support for caregivers and parents. Groups are led by counseling or medical professionals, MDA staff members or people served by MDA.

Participants and facilitators are motivated to attend for numerous reasons.

In Dayton, Ohio, support group facilitator Amy Dunaway-Haney said people who attend her monthly amyotrophic lateral sclerosis group are affected by the disease at all levels.

"We have a lot of people who come to the group who have been coming for years, and some who are newly diagnosed," said Dunaway-Haney, who has a master's degree in counseling and is a licensed professional counselor. "Sometimes it's a really bonded group, and sometimes we have a couple of new faces."

Occasional guest speakers -- financial planners, occupational therapists, equipment vendors and even a service dog training group -- help to keep the monthly meetings lively and the information flowing, Dunaway-Haney said.

But participants' lives always take precedence, especially if an issue or problem has come up that the group can address. "Sometimes we discuss the feelings that go along with [a neuromuscular disease], but a lot of the time we talk about the practical things. For instance, how do you make your house accessible? How do you find transportation that you can actually afford?" she said.

Information and Empathy

Exchanging information is also a priority for a general MDA support group in Nashville, Tenn. So much so, in fact, that facilitator James Kelley named the group the Nashville Exchange.

It's a name he chose "so that people would get the idea that it is an exchange of information and power-invoking thoughts," and not a "crying session or a depressing environment," Kelley said. The name is part of an effort that has included passing out business cards and making T-shirts to re-energize and market a group that's seen waning attendance in recent years.

Kelley said group members talk about everything from government programs and MDA services to hints to aid daily living. "A lot of times we just share problem-solving ideas," Kelley said. An example: He and his wife, who are both wheelchair users, discovered they could clean their bathtub by using a mop with Tilex and Comet. "These little solutions or tricks are great things to share with other people."

Both Kelley, who has facioscapulohumeral muscular dystrophy, and Dunaway-Haney, who has a form of limb-girdle muscular dystrophy, see empathy as an important key to support groups.

"You can go to your doctor or your physical therapist, but no one really knows like someone who's been in that situation," said Dunaway-Haney, who is also a full-time teacher and conducts a private counseling practice three days a week.

When gathering in a group isn't possible, the phone can bridge the gap for people looking to connect.

"We'll have people who will say, 'I went through that last year, and here's how I took care of it, and here's a phone number.' That's one of the neatest things -- people really network and they get to know each other and they're such a support for each other," she said.

Kelley, who is 30 and received his diagnosis at age 10, said he strives to share what he's learned during his own struggles.

"It's only been in the last five or six years where I've kind of settled down and said, 'Hey, look, this isn't the end of the world, having a neuromuscular disease,'" he said.

Both Dunaway-Haney and Kelley encourage those who might have shied away from a support group to give it a chance. "I would say that everybody that faces this kind of disease, or if a family member has it, has to find their niche where they feel comfortable. One of the biggest healing processes can be when you give back," said Dunaway-Haney. "This might be the thing for someone out there who may not feel like they need the support but they'll be able to offer very valuable information."

Kelley stressed that support should be ongoing in the community of people affected by neuromuscular disease. He gets frustrated when people who attended a group when they or family members were first diagnosed find a network of friends, but don't stay involved in an MDA group.

"If everybody adopts that kind of attitude, then who is going to be there for the newcomers?" he said. Nevertheless, he remains undaunted about building the Nashville Exchange. "If one person shows up and we can provide some sort of help or service to them, then the meeting is a success."

MDAchat

The Internet is a popular means of connection people use to find information, friendship and support. MDA got in on the action when it launched MDAchat in June.

MDAchat comprises several online discussion groups held at designated times on MDA's Web site. Weekly and monthly groups cover a wide range of topics, including specific diseases, a kids' chat, a bilingual session on Hispanic issues and even a new session about service dogs. (View the schedule of upcoming chats or read transcripts from past sessions at www.mda.org/chat.)

MDAchat participants, who use on-screen aliases during chat sessions, say they enjoy the convenience of scheduled chats and have made new friends across the country.

Brad Williams, a host of the weekly limb-girdle muscular dystrophy chat, said getting involved in MDAchat has been a pleasant surprise.

Tom Bush, MDA's director of Online Services, ensures that MDAchat -- discussion groups over the Internet -- go smoothly.

"The primary thing that strikes me is the overall tone. It's very positive and upbeat. Not having any previous experience with support groups, I kind of had the vision that people would use it as an opportunity to bemoan their problems. Not so," said Williams, who lives in a Virginia suburb of Washington, D.C. "The people in the chat groups have, for the most part, wonderful senses of humor, and we keep each other laughing a great deal."

Chat sessions are usually an hour long, and participants may spend much of that time getting to know each other. "We discuss a variety of topics, both MD-related and others. We do a lot of sharing experiences with diagnoses, dealing with various issues in our lives, and sharing information we have come across," Williams said.

Williams, a research scientist, tries to keep up-to-date on the latest about research on LGMD and to pass on helpful information whenever possible, he said.

Thinking Positively

For Marile Hamman of Galesburg, Ill., the Internet was her first link to others who share her rare diagnoses of periodic hyperkalemic paralysis and paramyotonia congenita.

"It's a resource like no other," said Hamman, who, along with Lesley Whitten and Eric Anderson, hosts a weekly "Positive Thinking" chat.

This chat draws caregivers and family members as well as people who have diseases covered by MDA. The discussions cover an unlimited range of topics from current events to the latest movies, but participants also share their experience with neuromuscular diseases.

The group chose the "positive thinking" theme because "there's just a better way of looking at it. We're doing this to try to survive so we don't want to try to nit-pick all the bad things," Hamman said. "We want to find the better things and make the best of what we've got."

Both Hamman and Williams have met people during chats and then corresponded by e-mail beyond the scheduled sessions. "What happens is we meet everyone and then branch off from there on our own. There's a lot of people that I e-mail weekly in correspondence, in asking questions and helping them out," Hamman said.

For Williams, what matters most in taking part in MDAchat is "having people who can relate to my experiences." His fellow chatters agreed when he posed the question to them in a recent chat session, noting "you don't feel like you're alone anymore" and "to know that others understand a lot of what you're going through is such a big help."

And, it's by giving that Hamman receives the most satisfaction.

"It makes me get through my days better because I take the focus off me, I guess, and put it on someone else," Hamman said. "It gives me a purpose."

Phone Friends

For some, traveling to a support group isn't practical or possible, and a computer may be unavailable. That's why MDA has a "phone friends" system ready to help.

The program gets varying use around the country, but it seems to be especially popular in areas where cities and towns are far apart.

Eva Havens, MDA program service coordinator for Montana, maintains an informal phone friends system by pairing up people who want to talk with someone in similar circumstances.

"I try to match them personality-wise," said Havens, who also organizes a yearly mixer to bring together people from across the state who are affected by neuromuscular diseases.

In the case of Bill and Beth Brickey, she helped connect them to the first person who, after two decades of searching, knew exactly what they were going through.

The Brickeys live in Choteau, Mont., and Beth Brickey has mitochondrial myopathy, a disease that causes generalized muscle weakness, flaccid neck muscles and an inability to walk.

Given the rarity of the disease, plus the fact that the Brickeys live in an area where cities and towns are spread far from each other, the family often feels alone when dealing with the disease.

"We're pretty much isolated here," Bill Brickey said. The couple searched for 21 years before they got a correct diagnosis of Beth's condition, a genetic disease that also affects their daughters.

But recently, Havens connected the Brickeys with a woman who lives 100 miles away in Helena, Mont., who has the same disease.

"We've had three lengthy phone conversations with her since then," Brickey said. They find the most valuable part is talking with someone who can relate to the particulars of the disease, such as the overall exhaustion it can bring.

While connecting by phone can sometimes mean large long-distance phone bills, the Brickeys said being able to talk to someone who said, "yes, I understand what you're going through" has been remarkable. They plan a trip to Helena in the near future to further the friendship.

Bill Brickey encourages anyone feeling alone in a struggle with a neuromuscular disease to seek out others or to attend support groups.

"It's not a big pity party. It can be a real strength-building thing to do," Brickey said.

Pen Pals

Quest's pen pals listing has launched hundreds of connections around the world.

Quest readers may already know that the "MDA Mailbag" section of the magazine often contains a "Pen Pals" listing. There, folks who want to correspond with others can list their mailing or e-mail addresses.

The Pen Pals listing, which now boasts an international scope, runs when space is available, and Quest tries to include as many names and addresses as possible.

For Misty Cox of Shannon, Miss., listing her name in the pen pal section has led to a network of dozens of friends nationwide with whom she regularly communicates.

"I've got like 30 or more all over the country. My stepfather tells me that it is probably my biggest talent, because I love to do that. I love to write to people and send people cards," Cox said.

The letters and cards have also led to phone numbers and regular conversations. Cox, who has Friedreich's ataxia, said she'll dial up friends when she's home while other family members are working.

"I like to get to know people, especially people that have my disease. I like to talk to the people that have MD, but I also like to talk to the ones that have Friedreich's, because [the disease] works in so many different ways." Cox, who said she's often told she has an admirable attitude about her disease, said she tries to help others feel more positive, too.

"I thank the Lord every day, because I'm one of the fortunate ones. It does affect people differently, and I can really do everything for myself," Cox said. "I do everything, except the only thing I can't do is walk." She recommends that everyone try being a pen pal or keeping in touch in some other way, Cox said.

"I think it is a very good idea, because people need to correspond with other people that have MD. It really helps -- it helped me."