Walking — placing one foot in front of the other — is something most people do on a daily basis, usually without much thought.
For Kelli Johnsen of Emporia, each step is a challenging gift.
Johnsen was diagnosed with ALS 10 years ago. With her diagnosis, she joined a group of almost 20,000 other Americans, diagnosed with the disease. She was only 38 at the time of diagnosis, younger than most, but diagnosed nonetheless.
ALS is an unforgiving disease, it is a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord. Johnsen, once able to lift heavy dogs in her every day work in a veterinary office, is now unable to lift herself. ALS has affected her voice, her ability to walk and her independence. While ALS has stolen much from her, it has not taken her optimism.
“I would rather give in to my optimism than give into my fear,” Johnsen said.
Most people who are diagnosed with ALS only live two to five years after diagnosis. Johnsen doesn’t know why she has been given more time and is quick to point out she is an outlier — her experience with ALS hasn’t followed the traditional course.
“My doctors don’t know why,” Johnsen said. “They don’t know why I’ve had some improvements. They say now it seems more like a chronic disease in my case rather than a terminal disease.”
Physical therapy has proven to be helpful for Johnsen. She began physical therapy with Greg Bachman at PT Associates of Emporia several years ago. She originally began seeing Bachman because of pain in her shoulder and hip.
“She started coming in for her shoulder and hip pain,” Bachman said. “Because of the time she spends in the wheelchair, her muscles in her hips and legs get tight, making it painful for her to lie in a bed and sleep.”
The stretching provided in physical therapy has allowed Johnsen to sleep peacefully in her bed at night, a welcome relief. She said the stretching makes a huge difference and has reduced her pain.
The more time Bachman spent working with Johnsen, the more ideas began to formulate in his head. One day he suggested something to Johnsen, leaving her shocked.
“He brought up trying to walk,” Johnsen said. “I thought he had gone stark-raving mad.”
Bachman and Johnsen both laugh at the memory. It’s been a couple of years now since Bachman made the suggestion. After considering Bachman’s suggestion for a few days, Johnsen decided to give it a shot — what did she have to lose?
“The first day we tried, I took two steps and was exhausted,” Johnsen said. “It took everything I had. I couldn’t move, I was so exhausted.”
Though exhausted, those first steps ignited a desire in Johnsen for more. And more steps have come. Two steps, 12 steps, 34 steps, 70 steps — with each step Johnsen takes Bachman encourages her, and his staff helps support her. With Bachman’s gentle guidance and her mom cheering behind her, Johnsen has successfully taken well over 100 steps on her own.
Taking steps, even small ones, after losing the ability to walk is huge. Each step requires much thought, much coordination and an unexplainable amount of energy. But once a week, even on the coldest of days, Johnsen looks forward to leaving her home and wheelchair behind to get those steps in.
Her experience isn’t typical of someone with ALS, but it is hers.
“The important thing to remember is we aren’t treating ALS,” Bachman said. “We are treating Kelli. We are looking at her and coming up with a plan that works for her.”
So far, the plan is working. Johnsen will keep taking those steps and she will keep stepping into her optimism.
“When you find out you have ALS it feels like a tragedy,” Johnsen said. “But just because something tragic happens doesn’t mean your life is a tragedy.”