An Internet chat can be a lifeline to the larger world for people with neuromuscular diseases. And chat hosts are holding the end of that lifeline, pulling in people from around the world seeking companionship, support and information.
MDA offers some 20 online chats each month, and is lucky to have more than 50 volunteer chat hosts helping chats run smoothly and ensuring chatters feel safe and welcome. This article contains profiles of eight of these special people.
If you’ve never visited an MDA chat, or if you haven’t visited in quite a while, it’s free and easy to sign up. E-mail email@example.com with the nickname/user name you want to use, and a password will be e-mailed to you the next day (or on Monday if submitted over the weekend).
Worried you can’t chat because you’re a slow typist? MDA’s new chat format, DigiChat, allows users to slow down the speed of the chat on their screens. After you’ve entered an individual chat room, click on Settings in the lower right, then click the Options tab. Under Options, choose the Message Scroll Speed from the pull-down menu (very slow, slow, normal or fast) and click on Save.
The MDA Chat calendar page includes a listing of all chats, days and times, transcripts of previous chats, and instructions for starting a new chat.
(Note: Chatters must have the latest version of Java for DigiChat to work correctly. An older version of Java may cause chatters to get "booted" from MDA chats, or may hinder people from logging in.)
Read on to learn more about pooh-bear, dannyd, Froglady, beckdildal, tatbird, lillucy and Marcolopez.
Positive thinking and SMA chat
Mary Coletti (pooh-bear), 48, who lives with her husband, Sergio, in Nottingham, Pa., was found to have spinal muscular atrophy (SMA) in 1986.
|Mary Coletti with her husband Sergio|
She began hosting the SMA chat six years ago, when the original chat host stepped down. Deciding that the chat was too important to close, Coletti picked up the slack and became the host. A year later, she also joined the Positive Thinking chat as a co-host.
“Communicating with friends, touching base with friends is what the chats bring to me,” she says. “Chatters know they have somebody they can talk to when they have problem or if they just want to stop by and say ‘Hi.’ They know they have someplace they can come to.
“I think having the chats is a godsend.”
Coletti says she enjoys hosting the chats and feels appreciated when chatters say they can’t wait to come back the next week.
Besides being fun and informative, the chats are a link to the rest of the world. Coletti, who works from home, says many chatters find it difficult to get out because of challenges associated with their disabilities, but MDA chats provide a social network that’s easy to access.
Join pooh-bear for the Positive Thinking chat Thursdays from 8 p.m. to 9 p.m., and the SMA chat Fridays from 8 p.m. to 9 p.m.
Living with ALS
Daniel Dandignac (dannyd) of Leander, Texas, has been a Living with ALS chat co-host since 2004, four years after he received a diagnosis of ALS (Lou Gehrig’s disease). Dandignac, 48, has two children, DJ, 15, and Drew, 12, with his wife of 16 years, Kelley. The family has a Great Dane puppy named Hoover Dane.
Dandignac co-hosts the chat with Jeff Lester of St. Louis (ragingbear), who started it several years ago. Each host runs two of the four Living with ALS chats a week.
A retired paramedic, Dandignac says he became a chat co-host because he wanted to reach out to people with ALS around the world. He enjoys interacting with others with the same disease, and says that having been a paramedic for 23 years makes him want to continue helping people.
“Our purpose has always been to be a place where folks could come and talk to people who understand the issues they're going through. We offer moral support, solutions to difficulties they may be facing or just chitchat about whatever comes up that day,” says Dandignac, who’s ambulatory with a walker and uses a power wheelchair for long distance. “We also offer resources that patients or caregivers might not be aware of.”
Upcoming MDA events, recent clinical trial results and Medicare issues are some of the other topics discussed. Of course, the chat is also a social circle that brings up sports, politics and weather.
“There’s great satisfaction in knowing you made a positive difference in someone's situation, that you imparted a solution or advice that made someone's life a little better,” says Dandignac, noting people are grateful for a chance to “talk” to others who share similar challenges.
Recently, turnout for the Living with ALS chat has been very low. Dandignac says the biggest challenge for chat hosts is spreading the word that their chat exists and may offer some beneficial information.
“I think that there are quite a few folks that have stopped by because they were new or had a problem they needed a solution to, and they left happy with a list of potential solutions,” he says. “I think we have the potential to do so much more if we had a larger group participating.”
Dandignac is hoping for more Living with ALS chatters and says it doesn’t matter how fast or slow they type. He says he does pretty well hunting and pecking at 30 words a minute, but some chatters use Eyegaze software and speech-to-text programs.
Stop by and say hello to dannyd on Sundays and Mondays from 3 p.m. to 6 p.m.
|Wilma Jean Hooper|
Wilma Jean Hooper (Froglady), who lives in Marana, Ariz., with her husband, Jim, received a diagnosis of facioscapulohumeral muscular dystrophy (FSHD) in 1968 and co-hosts one of the FSHD chats. Hooper’s chat draws participants from across the country, and she even has a regular chatter from Australia.
Hooper, 72, who has an identical twin named Jo Smallwood and several other family members with the disease, started the chat seven years ago. She says the chat puts her in touch with the outside world.
“I thought it was just a great idea for other people with the same condition I had to get together and discuss our common issues and keep it on a level where we could discuss and yet not feel sorry for ourselves,” says Hooper, who uses a power wheelchair. “It’s a support group. We support each other.”
Hooper says the chat is especially helpful to people who’ve just received a diagnosis and are in shock.
“When you’re so frustrated and you don’t know what your future holds, people can come on the chat, and we can lift each other up,” she says. “It might not be as bad as it looks at the moment. We’re really good for each other, in my opinion.”
Chat with Froglady and her friends Mondays from 9:15 p.m. to 11 p.m.
Rebecca Howell (beckdildal) lives in Des Moines, Wash., with her husband and their two cats. She co-hosts the MD Support Group chat and the FSHD chat with Froglady. Born in India, Howell, 46, was found to have FSHD when she was 20. She has worked as a medical technologist in the hematology lab at Group Health for 23 years and recently began a new customer service position in the lab.
Howell feels that co-hosting is a good way to contribute to the MDA family.
“When I was first diagnosed, I felt very isolated. Back then there was no Internet, so the only support groups were those held by MDA in the local community. I was fortunate to find one of those,” says Howell, who uses a walker and scooter.
“When I found the FSHD chat, I felt like I belonged as we had so many things in common. I think everyone should have an opportunity to share with others who have similar experiences.”
Howell says the chats provide a positive outlook on life and are informative and fun, but they also can be serious and personal. Howell warns chatters not to post personal information such as full names, addresses, phone numbers and e-mail addresses, because the chat transcripts are recorded and posted online.
As long as chatters remain safe, chats can be extremely helpful to others.
“For some, the chat is their first opportunity to meet others with the same type of muscular dystrophy,” she says. “Others are facing a new diagnosis and are relieved to have someone to talk with.”
Join beckdildal Sundays from 7 p.m. to 8 p.m. for the MD Support Group chat and Mondays from 9:15 p.m. to 11 p.m. for the FSHD chat.
Timothy Turner (tatbird) of Cleburne, Texas, was diagnosed with limb-girdle muscular dystrophy (LGMD) in 1986 and retired from National Tire Warehouse in 1990. Turner, 45, who is married to Donna and has two sons, Chad, 20, and Andy, 15, and three cats, hosts one of the LGMD chats. He recently became a proud grandpa to Haiden.
Everyone is welcome to the LGMD chat, regardless of the type of disability, says Turner, who uses a walker, power wheelchair and scooter. The chat is about friends coming together to share stories about living with disabilities and letting them know that they’re among friends.
“You’re not the only one with muscular dystrophy, and it’s not the end of the world,” he says. “The other people in your life may not know what you are going through because they’re on the outside looking in. But most of us with muscular dystrophy understand and we care.”
Turner, who has been hosting the chat for five months, says that other chatters have helped him through difficult times, and he wanted to return the favor. The chat usually averages five chatters ranging in age from 20 to 65.
“The friends in chat are not just friends, they’re my MDA family,” he says. “If you have family, you’re never alone.”
Chatters discuss a wide variety of topics, and they to laugh.
“One of the chatters told the room that they fell on the floor that day and ended up with their head in the cat food,” says Turner. “They’re OK — just a little cat food on their face. ‘Chicken or fish?’ we all asked.”
You can chat with tatbird and gang on Fridays from 9 p.m. to 11 p.m.
Henryne Dillard (hen) of Stockton, Calif., has LGMD and co-hosts the weekly Wheelchair Gang chat, where chatters discuss everything from wheelchair issues and equipment needs to accessibility and doctor experiences. Dillard, 56, is married to Roderick and has two grown daughters, Shonn and Jamie, and four grandchildren. Shonn also has LGMD.
An animal lover with a dog and a cat, Dillard used to be an LGMD chat host, but has co-hosted the Wheelchair Gang chat for more than a year.
Before her experience as a chat co-host, Dillard was an MDA chatter. She’s visited the Positive Thinking, Duchenne muscular dystrophy (DMD), ALS, myasthenia gravis and SMA chats, and made friends everywhere.
“When I began chatting, I was so happy to find the MDA chats,” says Dillard, who uses a power wheelchair. “It was helpful to talk to others that were going through what I was going through and I got very comfortable with the people I met. It was encouraging, and it felt good to be there for each other.”
MDA chats are successful, but Dillard hopes more chatters will join in.
“I would invite [potential chatters] to check out the MDA chats,” she says. “Don't feel embarrassed to come to the chats. The hosts do their best to make everyone feel comfortable and to ease their minds somewhat in dealing with muscular dystrophy.”
Dillard often gets positive feedback from fellow chatters, who seem to become more relaxed after chatting with the gang.
“I think the only challenges in hosting are that I don't know everything about all the different [neuromuscular diseases] and can't answer some of the questions people have,” she says. “But I try my best, and along with the host, Ken Tindell (tim-t), we direct them to Web sites that can give them more information.”
Stop by and chat with hen Wednesdays from 10 p.m. to 12 a.m.
Cindy Deatherage (lillucy) of Chenoa, Ill., received a diagnosis of Friedreich’s ataxia (FA) in 1980 and co-hosts the FA chat, which was started six years ago by Rachel Bostic (webhoney). Soon after the chat was up and running, webhoney asked Deatherage, 44, to join the FA chat as co-host. Prior to that, Deatherage co-hosted the Positive Thinking chat.
Co-hosting a chat has many benefits. Deatherage, who uses manual and power wheelchairs, says she learns something new about FA every chat.
“I’m meeting new people, and I learn how other people meet their challenges,” says Deatherage, who’s been married to Larry for 21 years and has two dogs, Kalli and Molly. “That sometimes helps me as well. They help me as much as I help them.”
Chatters find that there’s a whole community of people with FA or other neuromuscular diseases.
“A lot of chatters say, ‘I thought I was alone,’” she says. “They find out in this group that you’re definitely not alone, and if you need help, I’ll do my best to find it.”
The chat, which has around 10 regulars, usually doesn’t have a set topic. Instead, chatters discuss what is going on in their lives, problems they’re having and some solutions. Of course, they also share recipes and chat about movies they’ve seen.
“Someone had told me a long time ago when I first started chatting that the hard part about it was getting to know the people and then losing them. I didn’t know then, but I know now,” says Deatherage. “In the Positive Thinking chat, I talked with a lot of people with ALS, and some of them later lost their battle with ALS. That just broke my heart.”
Although the chats are sometimes serious, they can also be like parties or get-togethers with friends from around the world. Deatherage advises, “Bring a snack and a comfy keyboard!”
You can join lillucy online Tuesdays from 7 p.m. to 9 p.m.
Marco Lopez (marcolopez) of Colima, Mexico, who was found to have LGMD in 1994, co-hosts the Hispanic International chat with Osvaldo Lunardi (osvaldo) of Buenos Aires, Argentina. Osvaldo has Becker muscular dystrophy (BMD).
|Marco Lopez and friend
The chat, MDA’s only one in Spanish, was started in 2000 by Luis Baéz, who died in 2002. It usually has six to eight chatters from countries such as the United States, Mexico, Argentina, Spain, Colombia and Honduras. Lopez, 33, an engineer, has been a co-host for a year.
Lopez says the chat was started to provide a space for people who speak Spanish to share their experiences, doubts or information needs. (MDA also has a Spanish-language Web site).
“I enjoy hosting this chat because I have the chance to help other people even from different countries where they do not have doctors with experience in neuromuscular diseases,” says Lopez, who’s ambulatory but uses a manual wheelchair for long distances. “With the information that we provide them and the information that others provide me, we can improve our knowledge about our own diseases, and in this way, try to have a better life.”
Helping people is what the chat is all about.
Lopez remembers a new chat participant who lived in a small town in Honduras. His two brothers had a neuromuscular disease, but didn’t have an exact diagnosis. Local doctors weren’t familiar with neuromuscular diseases, but the chatters told him what kind of specialists to look for.
“Fortunately some weeks later, we knew his brothers had been diagnosed.”
Stop by and say “hola” to marcolopez Sundays from 2 p.m. to 5 p.m.