I am Julie Paradise
a family member in a familial ALS family,
a family member of someone we've lost to ALS
It confirmed what we all knew, ALS had taken away everything but she was still the same person.
My Mother, Virginia Loncar, died of ALS over 25 years ago. She was such a strong presence in our family. She is still remembered and talked about daily. Her battle with ALS was the inspiration for her grandson, Mark, my son, to become a doctor. She was diagnosed at 61, while she was still running a successful dancing school and teaching all the tap classes herself. As a life-long dancer, she was healthy, fit and with no symptoms. She was gone in 2 years. She maintained her vibrant personality but lost he ability to speak within the first year. This was before the technology that is now available that would’ve helped her to communicate with her family. Instead, we held a clear plastic board up, with groupings of letters which we pointed to and she would signal the desired letter by blinking her eyes – 1 blink “yes” and 2 blinks “no.” It was tedious but days before she died, she spelled out this message to me, “cut your hair.” It confirmed what we all knew, ALS had taken away everything but she was still the same person.