Karen’s Story

In 2015, Karen Langan, a longtime scrapbooker, went to put a box of supplies back on a shelf over her head and realized she couldn’t lift her arms that high. “That’s when I think I realized something was really wrong. Up until then, I had kind of chalked things up to getting older, being tired or maybe a little out of shape. But that moment stands out to me as when I knew I needed to find an answer.”

In the summer of 2015, when a carpal tunnel surgery did not help with the weakness she was having in her left hand, she was referred to an orthopedic surgeon for possible surgery on her neck. The surgeon could see her weakness was not caused by damage to the cervical area and referred her to Dr. Fernandes at Nebraska Medicine. There she received her diagnosis of ALS in 2017 and began attending The ALS Association Certified Treatment Center of Excellence.

Karen has been an educator for more than 30 years and currently teaches kindergarten. Her ALS is progressing slowly, so to date her hands and arms remain her primary weakness. “I continue to teach. I work at an amazing school and have amazing coworkers and friends who make that possible.” In her classroom she has modified how things are arranged, turned some responsibilities over to her students and relies on parent volunteers to help when needed. “I tell my students that my arms aren’t working right. That’s all they need to know, and they just accept that.”

In addition to administrators, staff and volunteers chipping in to help, older students are getting involved too. “Each day before lunch and free time, some older students come down and help with tying shoelaces. I can do a couple, but my hands are too weak to tie them all. The fifth-grade teacher is a good friend, and she sends a few students down each day to help with shoes.”

Karen also gets help from the local ALS office. She says, “If I need something, I just send an email, and I get good support. They do it very quickly. We’re amazed at how fast they get things done.”

Karen’s visits to the ALS clinic have decreased since her initial visit. Her slow progression allows her to extend the time between visits from the initial three months to five months now. She continues to see Dr. Fernandes and knows she has help at the clinic if she needs it. “They are all very helpful, very quick to help.”

Like her kindergarten students who, without being asked, will help her with her coat, “They know it’s difficult for me to put it on, so before I know it, there are a couple pairs of tiny hands helping me.” Karen is blessed with a full list of people willing to help her each day.