Columns

Walking my service dog, Wendy, is fun, relaxing, and, oddly, one of the things I do daily that makes me feel independent. Yesterday, the sun was shining down on us even as we inhaled the warm, musty smell of the previous night’s rain evaporating. (I think Wendy smelled the same…

I have two children who are incredibly different. One is outgoing, and one is shy. One likes to go with the flow, and the other came into this world with strong opinions. One has no known medical concerns, and the other, Amelia, 12, has Friedreich’s ataxia (FA). I’ve parented…

I just finished reading “The Beauty of Dusk” by Frank Bruni. It is largely a memoir of his experience having a stroke that caused partial blindness in one eye. He must also contend with his other eye possibly being affected. In trying to figure out how best to…

I love to travel. Being able to pack up quickly and go is something I value. It’s also a skill I’ve fostered in both of my daughters, Katherine, 14, and Amelia, 12. They’ve been able to pack their overnight bags since they were small. I love this level of independence…

As with most vacations, I knew I’d be in for a lot of walking when we took our children to Boston this summer. That meant I had to think about which mobility aid I should bring after considering safety, practicality, transportability, and access. I first visited Boston in 2011…

Recently I had to purchase shoes. I’ve always loved shoes and clothing, and I feel creative when I select an outfit that reflects who I am. Also, I simply feel better when wearing an outfit that feels like me. Shoes are a big part of that. I remember breaking…

My dad, Freddie, and Ethan, my manager here at Bionews (the parent company of this website), sat on either side of me as we awaited the opening session of the National Ataxia Foundation‘s (NAF) annual conference on the last day of May. We eagerly anticipated seeing the first speaker on…

Even after 42 years, I still remember the day a neurologist diagnosed me with Friedreich’s ataxia (FA). He told my parents and me that I had about 16 years to live and six years before I’d start using a wheelchair. Then he had me leave his office and told…

During a recent layover at O’Hare International Airport in Chicago, I learned some unexpected news about an upcoming pediatric clinical trial for Friedreich’s ataxia (FA), the disease my 12-year-old daughter, Amelia, has. My flight to Chicago had been delayed by weather, which I find curious because the climate…

Stumbles, accidents, and falls come with the territory of many physical disabilities, especially ones like Friedreich’s ataxia (FA) that impair balance and coordination. Although my falls have become less frequent since I was outfitted with the necessary mobility aids, these incidents remain a fairly unavoidable reality in…

Mother’s Day is a tough one for me. My husband, Dave, and I lost a much loved, wanted, and planned-for baby in 1999. My mom died in 2016, and Dave’s mom died in early 2023. So we decided to honor Mother’s Day this year by going to Portland, Maine.

The pig was supposed to fly, but fear was holding her back. One summer night several years ago, I was watching the movie “Sing 2” with a child tucked under each arm. Both of my daughters were encouraging the character on screen to jump. Rosita, who my girls were…