BY DANIEL GAITAN | daniel@lifemattersmedia.org

Christine Finnegan wanted to learn more about amyotrophic lateral sclerosis, or ALS, the debilitating disease with which she she was recently diagnosed.

The 53-year-old mother of three attended the ALS Association of Chicago’s Educational and Scientific Symposium this week at Rush University Medical Center to hear about promising research and accessibility products for patients facing the incurable illness.

“I’m just starting to deal with the first changes that you experience,” Finnegan said. “It’s hard to take in.”

About five years ago, Finnegan began struggling with muscle cramps that “didn’t seem like typical ones” and upper body weakness. She works as an occupational therapist in Chicago and has seen the paralyzing effects of disease.

“I’m scared,” she said. “I’m scared and disappointed of what’s to come. Not being able to see everything important with my kids that are getting older. Are they going to be OK? Are they going to be happy?”

What Matters Most

It remains unclear how quickly the neurological disease will progress. Finnegan has already begun to prioritize her family and friends over work and errands.

“Although I love my work, the most important thing is family and spending valuable time with them,” she said. “I need to say, ‘Yes, we are going out this night, for sure.’ Not saying, ‘Oh, we’ll get together in the future.'” She plans large family gatherings at least monthly.

Finnegan attended the day-long symposium with her mother, Sharon Posen.

“We all feel that it can’t be true,” Posen said. “It’s hard, it’s real hard. You never know when you’re going to break down. You’re OK for a while, and other times you’re just wasted for three days.”

Posen said she is already going through the “Five Stages of Grief,” a model by noted psychiatrist Elisabeth Kübler-Ross that includes denial, anger, bargaining, depression and acceptance. Other family members have not yet accepted her condition.

Nationally, 15 people are newly diagnosed with ALS each day— about 5,600 people per year, according to the ALS Association.

The disease may affect any adult at any time by attacking the motor neurons that send messages from the brain to muscles. Most people who develop ALS are between the ages of 40 and 70.

Many patients are unable to walk, talk, breathe or feed themselves.

The ALS Association of Chicago is a nonprofit organization offering free resources to ALS patients.