Katja Kicks ALS
Organized by: Katja K
Katja kicking ALS
March 26, 2017
In 2015, Katja experienced cramping in her right calf. The pain worsened and she went through batteries of tests until months later she was finally diagnosed with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease - www.alsa.org). This is a degenerative disease in which nerve cells die off, leading to ever-decreasing muscle function. Eventually, patients lose control of the muscles used for movement, speech, breathing, and eating. There's no cure for ALS, and most people pass away within 3-5 years of diagnosis. Katja progressively lost use of her right leg, right arm and became very unstable. With the help of her immediate family we moved Katja into a handicap-accessible apartment and from there Katja continued working full-time as a Speech Therapist. As the neuropathy worsened throughout her limbs, her daily activities became more troublesome, especially as she was in a wheelchair the majority of the time. Katja applied for an extended medical leave while her doctors worked hard, but unsuccessfully, to get her in to some ALS clinical trials, where she would have access to new medicines to hopefully slow the progression of her disease. Her eventual inability to transfer in and out of the chair on her own, in addition to increased issues with coughing and blood clots, convinced Katja it was safer for her to not return to work and to move out of the city where her parents could better care for her.
After living at home for a few months, her mother (and primary caregiver) was diagnosed with lung cancer that eventually metastasized to her brain. As her mother went through chemotherapy, we desperately needed to hire outside help for both Katja and her mother. We began with an aide to assist with bathing and dressing a few days a week, but eventually required assistance 2 to 4 hours per day as Katja couldn't eat solid foods and had become completely dependent on others. The cancer was not slowed by the chemo treatments, causing immense pain and discomfort and in November, Katja's mother succumbed to her illness.
Despite all of this, Katja has done her best to be positive and fairly outgoing; seeing movies, enjoying music and art, and spending time in nature. No one can predict the actual trajectory of her disease (Katja was symptom-free until April 2015). We are always hoping for the best and attempting to plan for the future while not knowing exactly what that may hold. We are continuing to do everything we can for her...finding a motorized wheelchair, physical therapy, non-stop specialist appointments, and assistive technology. All of the contributions thus far have been put to great use, but sadly her needs continue to grow. Katja is now immobile beneath the neck and has been able to speak less and less. She needs full-time breathing support and that makes simple tasks like brushing teeth and washing hair far more complex. All of these costs really add up and we are in need of some help during this dire time for our family.