Jeff Hoffman, 37, a resident of Matthews’ Thornblade neighborhood, and Greg Smith, 49, of Ocean Springs, Miss., have developed a strong friendship – but not in the usual way.
The two became friends through a private Facebook page Hoffman built. The page is designed as a members-only page for those with muscular dystrophy.
Hoffman, who has a type of MD called Spinal Muscular Atrophy Type 2, said, “I was going through a rough patch in my own life and thought, ‘I sure wish I could talk with someone who understood what I’m going through.’
“I love my family, but no one really knows what it’s like unless they have MD themselves.”
Similarly, Smith, who also has MD, wanted to find a way to connect with others with the disease.
“When I was a kid, I had camp buddies with muscular dystrophy, but since I’ve become an adult, I haven’t really had any,” said Smith.
“That’s what is so wonderful about the ‘Living with MD’ Facebook group. Suddenly, I have 350 people who ‘get it.’ They understand exactly what I’m going through, and it feels good to discover our commonalities,” he said.
Hoffman said he looked at existing groups on Facebook for people with MD, but most were open to the public. As a result, the conversations on those pages were not as candid.
“I wanted a private place where we adults could talk, amongst ourselves, about anything, and I do mean anything,” said Hoffman. “Our goal is to connect adults with neuromuscular disabilities from all around the world, so we can help each other. Together, we are stronger.”
The page excludes minors so conversations can be open and involve a wide range of topics, including how to hire and manage caretakers, how to navigate medical assistance programs, how to date with a disability and how social programs differ within each state.
The 375 members of the group live throughout the U.S., Peru, England, Ireland, Sweden, Australia and the Philippines. Because of the geographic diversity, the group has also exchanged advice on how to travel.
Smith was host of a nationally syndicated radio show for more than 14 years that focused on people with disabilities. He has also been a motivational speaker for more than 10 years. Members like Smith help the group understand how to live with disabilities and manage a career.
“I have always had a very realistic attitude about my disability,” said Smith. “I have very high goals and aspirations and that is what fuels me. So I manage my life. Not my disability. I drive, fly around the country.
“The situations my disability puts me in give me subject matter for my presentations. I’m so busy living my life that I don’t worry too much about my limitations, but I do focus on my solutions to those limitations, which give me lessons that everyone can learn from.”
“I think what is happening with the group is that strong friendships are being developed because we are discovering things that we have in common but could not discuss with anybody else in the past,” said Smith. “It feels really good to bring up things that you thought were in your own mind only and to discover that other people are going through the same thing.”
Jennifer Ford is a freelance writer. Have a story idea for Jennifer? Email her at firstname.lastname@example.org.
The Charlotte Observer welcomes your comments on news of the day. The more voices engaged in conversation, the better for us all, but do keep it civil. Please refrain from profanity, obscenity, spam, name-calling or attacking others for their views.
Have a news tip? You can send it to a local news editor; email email@example.com to send us your tip - or - consider joining the Public Insight Network and become a source for The Charlotte Observer.Read moreRead less