I recently had the opportunity to be interviewed by Madeline Eubanks, a journalism student at the University of Washington. She was piecing together a story about the benefits of technology for MS patients. Another writer and I were mentioned for our websites, as well as MyMSMyWay.com for its technology collaborative.
Interesting piece:
People living with multiple sclerosis are using blogs to create a network of similar patients to share tips, experiences and important information.
MS is an autoimmune disease that targets the central nervous system when the body’s defense system attacks the myelin sheath that surrounds the nerves, disrupting nerve signals. This chronic disorder can lead to disability and death.
“I was looking at my son,” said Jaime Hagarty, an MS patient, discussing one of her MS relapses. “And I couldn’t even tell you what his name was. I knew he was my son, but I just couldn’t match that up cognitively.”
Hagarty said that when she was diagnosed in 2004, she felt like she “lost control” over her life. In March 2006, Hagarty started a blog called My MS Journal (http://mymsjournal.blogspot.com/) as a “creative way” to deal with her illness. Within a week of opening the blog, Hagarty received comments from people “all over the world.”
“I didn’t think that anyone would care about what I had to say,” Hagarty said. “I never expected to have the response I did because I never figured anything I had to say, and what I was going through, would mean anything to anyone else.”
Hagarty has been named a Top Health Blogger by the Multiple Sclerosis Community of Wellsphere.
“I realized that there were people out there with MS who were going through similar things,” Hagarty said. “I realized there was this great network out there. That really inspired me to do something more than just a journal. I started to make it a one-stop shop for people with MS. I wanted it to be a resource for others going through the same thing.”
Hagarty’s blog has not only helped other people. She’s also helped herself. “My blog has saved me. When I started my blog, it opened up a whole network of people like me,” Hagarty said. “It has helped me understand my illness.”
Jennifer Gerics, age 38, was diagnosed with MS in 2005. Gerics maintains a blog called MS Strength (http://www.msstrength.com/). She started blogging in 2008.
Gerics covers a wide variety of topics. Some of her topics include book reviews such as “Women Living With Multiple Sclerosis” by Judith Lynn Nichols, MS off-market drugs like Low-Dose Naltrexone (LDN), and the first World MS Day on May 27, 2009.
“I just wanted to tell my story and give others positive encouragement,” Gerics said.
Blogs are one of the several technologies MS patients are turning to. On July 16th, MS Technology Collaborative, a team sponsored by Microsoft, Bayer Health Pharmaceuticals, and the National MS Society, launched the three “Brain Games” to help MS patients exercise the visual, dexterity, and cognitive functions of the brain.
Ellen Kampel, a public affairs manager at Microsoft, is a co-author of the Tech Connect column at MyMSMyWAY.com, and has lived with MS for thirty years. She has also tested the Brain Games.
“It’s kind of like brain aerobics,” Kampel said.
Kampel’s MS symptoms include temporary losses of vision and the muscles in her hand “locking up.” When these symptoms occur, Kampel uses other technologies such as voice recognition software.
“It’s important that technology can adapt to the changing needs of the individual,” Kampel said.
Elizabeth Morrison is a physician at Cascadia Multiple Sclerosis Center, a clinic that serves about 320 MS patients. She has a mild case of MS. Dr. Morrison is also on the MS Technology Collaborative steering committee and was a beta tester for the games. She has referred the games to some of her patients.
“It’s nice to have something free and online and easy to access,” Morrison said.
Dr. Morrison also mentioned the Snapshot Tool of MyMSMyWay.com that indicates symptoms patients are having, such as cognitive issues or motor control problems. When the basic symptoms have been found, the Snapshot Tool guides people to different resources, such as text readers or voice activation.
“The sky is the limit when you have resources,” Morrison said. “There are all kinds of amazing technologies that are available for people.”
Hagarty is “grateful” for the assistance technology has given her, especially for the network her blog uncovered. “It’s nice to have that support system,” Hagarty said. “It’s nice to know that you’re not alone.”
