MDA Mailbag Spring 2012

Thankful for kindness

I am a 28-year-old poet with spinal muscular atrophy. My symptoms began showing themselves before I ever was able to take a free step and kept me from ever doing so. Through my life I have remained very physically and mentally active, completing coursework toward a master’s degree in sports psychology while working with the Eastern Washington University men’s basketball team.

People humble me with acts of random kindness and unsolicited polite words on a frequent basis, and I would like to thank them. Each person carries their own disability and if we all treated each other as honorably as many people treat the physically disabled, then the world would be a better place.

Travis Laurence Naught
Cheney, Wash.

Editor's note: Travis Naught's book of poetry, The Virgin Journals, is included in Book Reviews Spring 2012.

Pen Pals still missed

I disagree on how you have decided to do away with the Pen Pals section in the Quest magazine. I understand about the privacy act, but this is the only way some people can communicate with other pen pals. Not all people have computers or the Internet to find others.

My husband has MD and he enjoys writing to others and keeping in touch with them. So think twice about putting it back in the magazine.

Barbara Harmon
Proctorville, Ohio

Editor’s note: We miss Pen Pals too and were sorry to discontinue it due to privacy concerns. For those without Internet access, personal connections still can be made through your local MDA office. Call your local office at (800) 572-1717 to see what’s available in your area. Those with online access can connect with others through MDA’s Facebook and Twitter pages or MDA’s online chats.

Feedback from quest.mda.org

• Moving Out: Operation Get a Life (Quest, May-June 2008) — We’re just at the stage to consider that our 18-year-old son with DMD and graduating from high school may want an independent life, and this article helped me feel less panicked. It was comforting to read that it’s not horrible for parents to have the thought that they may want to have their regularly scheduled life back on track. Kids grow up and move on with their life. But when life throws DMD at you, the moving on seems less likely. He’s too scared to move away to college just now, but maybe his comfort that someone besides Mom and Dad can help take care of his regular life needs will come around. Adult sons and dads living together is quite a challenge, and we’ll just have to see how much motivation that challenge provides to “get a life.” Thanks for the comforting story and great ideas.

• Hit the Road in an Accessible RV (Quest, January-March 2012) —Thank you for such a great article! Much research is needed to have an RV converted and your article provided excellent tips and contacts. I am not surprised there is an RV group helping others that need conversions. RVers are great folks!!

• ABLE Act Would Help Families Plan Child’s Financial Future (Quest News Online, January 17, 2012) —As a recently disabled single parent of an adult child with Becker muscular dystrophy, I was so happy to read about the ABLE Act. I am struggling with the fact that I will not be around forever and am not working due to my own diagnosis of MS [multiple sclerosis]. I am trying to figure out how to protect what little I may have to leave to my son without jeopardizing his benefits. Even though my son is too old to benefit from this act, it has given me hope to continue researching trusts and specialized attorneys. Quest is very important to me and my son because it educates and motivates us to continue advocating.