Kaitlin’s Story

Kaitlin’s Story

Celebrate out loud

Meet Kaitlin

Kaitlin is a psychologist, wife, daughter, sister, and aunt whose family and faith keep her strong through her fight with ALS (Lou Gehrig’s Disease). Despite her diagnosis at age 29, Kait continues to work with children and families in grade schools and with her church. Kait believes in the importance of sharing her experience with as many people as possible to spur positive change for people with disabilities. As ALS has significantly affected her speech, Kait uses an eye-gaze communication device to tell her story to live and virtual audiences.

“My goal is to use every negative experience as an opportunity to see how to better help the system and to make accessibility the first thought rather than the second.”

— Kaitlin Gonzales Swanson, Psy.D

A series of tests

Before ALS, Kait loved to run. She jogged outside, often with her family, to stay fit and enjoy nature. Kait first suspected that she might have an illness when she began to exhibit one of the early signs of ALS: losing her balance on runs. She saw a foot doctor first, who recommended that she consult a physical therapist. Instead of regaining balance during therapy, Kait’s condition worsened. Eventually, even walking became difficult. Her therapist urged her to contact a neurologist. He tested her reflexes, eye movement, and sensation, and scheduled MRIs, but could not account for her symptoms. A family friend recommended another neurologist to her. Under this doctor’s care, Kait underwent an EMG, two spinal taps, and a spinal and cerebral test that required a week-long stay at the hospital. Finally, one of the hospital’s doctors told Kait she had amyotrophic lateral sclerosis, and less than a year to live. Kait has surpassed this prognosis many times over.

Family, faith & assistive technology

At her church and beyond, Kait has become a voice for people with disabilities. With the aid of her I-Series communication device, she informs her community about the realities of living with ALS with the hopes of inspiring a shift in the way society considers people who use AAC.

Beyond her advocacy work, Kait loves spending time with her family and friends and uses an I-Series to converse and celebrate. Her device’s loud speakers ensure she’s heard even during the noisiest moments of their gatherings.

Kait’s family is her primary support team, especially her husband, dad, mom, sister, and little nephew. She and her sister, who is also a psychologist, have co-hosted virtual talks about how people with ALS can achieve mental, physical, and social wellbeing. Kait uses her I-Series to share her perspective. She also participates in Her ALS Story, a community of young women diagnosed before their 35th birthday. She has faith that the future holds a cure for ALS, and will continue to do what she can to seek it out.  

A young woman with ALS and her friends huddled together in matching purple t-shirts.