ALS May Run in Catherine’s Family, But So Does Strength and Optimism

ALS

A typical day is anything but for Catherine Scott. She fills her time creating weekly dinner menus and recipes, making to-do lists for her kids, doing advocacy work, and working on a book and a new blog. And she does it all with only the movement of her eyes, thanks to an assistive device called a Tobii Dynavox I-15.  Catherine acknowledges, “You would think, as a mostly immobile and bedbound person, my life would be uneventful, but you would be wrong.” It’s all part of Catherine’s plan to make the most of every day. “I am living with ALS, not dying from ALS,” she says.

Read More

United by Myotonic Dystrophy, a Daughter Honors her Mom on Mother’s Day — and the 25th Anniversary of Her Death

In the decades since Leslie Krongold’s mother died at the age of 56, she has learned that they likely shared a neuromuscular disease — myotonic dystrophy — and, as Leslie approaches her own 56th birthday next year,  she feels more committed than ever to defying the odds her my mother couldn’t.

Read More

I’m an Adult. Talk to Me Like One.

I’m a 25-year-old college graduate. I’m an adult and I can prove it. I have bills, grown-up responsibilities and the obligation to do things I don’t want to do. Still, regardless of the date of birth listed on my Colorado State ID, some people still treat me like a kid. Unfortunately, a lot of the world finds it easy to infantilize people with disabilities.

Read More