Registered nurse becomes the patient as she confronts Lou Gehrig’s disease
By Christine Plummer Huber (’89)
It was fall 1984 when I started classes at the University of Nebraska. I found school to be very challenging. I was somewhat of a perfectionist, and had a fear of failure. Writing papers generated a floor of crumpled balls of paper. We didn’t have computers then and wrote papers on typewriters. We couldn’t backspace or delete. We would just pull out the sheet of paper, wad it up and start over.
Equally challenging for me was managing anxiety when I had to take a test. I remember sitting in a psychology class and as the tests were handed out, I completely froze. I just couldn’t do it. I could not pick up my pen to fill in the answers. Luckily, I had a compassionate professor, Calvin Garbin. He looked at me, told me to go home and allowed me to take the exam the next day.
After earning my psychology degree in 1989, I returned to school in 1991 at Bryan Memorial Hospital School of Nursing to become a registered nurse. This meant facing my fear of failure again. The challenges were similar: tests, writing papers, and this time around, taking care of real patients. I even got kicked out of my cardiac rotation. My teacher said I would never make it in that specialty and she transferred me to Neurology ICU, in which I excelled.
I found the brain to be fascinating, and the knowledge gained would be personally helpful later in life. I have been a nurse for 26 years, 10 of those were in the field of hospice. I found end-of-life care to be very rewarding. I met many people with incredible stories. I felt like I made a difference in their lives and in their death process.
Years ago I was visiting a hospice patient while working in Omaha. My schedule that day allowed more time with him. He told me stories about the places he lived and traveled. I was envious. I had wanted to move to Colorado for a long time. I told him that someday I would love to live there and spend time hiking in the mountains. “Don’t wait for someday,” he counseled. “Someday may not happen.” He forewarned me that if I waited too long, I might not be able to do those mountain activities that were so appealing to me.
I took his words to heart. I found a job and moved to Colorado in 2006. I hiked in the summer and snowshoed in the winter. In 2015, I found a partner who was an avid hiker and he introduced me to backpacking and hiking mountains that were at least 14,000 feet (referred to as 14ers). I was still afraid of failure, but I had someone who was there to cheer me on. I found this was the type of challenge I was excited about. This was very different from the college version of me. I found something I loved, and had a hospice patient to thank.
My goal was to hike as many 14ers as possible before I died. I only completed three. I will only ever complete three. I thought I had more time. This dream ended when I confronted the biggest challenge of my life.
My world suddenly took a daunting turn on Feb. 21, 2019, when I met with a neurologist to try to find out why I was tripping and falling so much. And why had hiking become such a struggle? He put me through a series of tests, bloodwork, a spinal tap and scans.
“This is bad” he said, “you have a motor neuron disease.” My head was spinning. I heard the words “get your affairs in order … feeding tube ... tracheostomy ... ventilator.” I spent the next few months somewhere between grief and denial. When I saw the words, Amyotrophic Lateral Sclerosis (ALS) on a visit note from my doctor, I knew it was real.
ALS, also known as Lou Gehrig’s, is a disease that affects the nerves that feed our muscles. With ALS, those motor neurons begin to die. When this happens the muscles atrophy. Muscles used for walking, breathing, swallowing and performing self-care become useless over time.
The end result is the person becomes totally paralyzed, unable to take nutrition by mouth, and unable to breathe on one’s own. The typical prognosis is two-to-five years, but some people who are slower progressing have outlived that.
There is no cure, but there are clinical trials happening right now. Unfortunately, many people are dying while waiting for these treatments to be approved.
In June 2020, Rep. Jeff Fortenberry (R-Neb.) introduced bill HR 7071 to the House of Representatives, which would accelerate access to critical therapies for ALS. In October 2020, the bill was changed to HR 8662 and introduced to the Senate as S 4867. The summary states: This bill establishes a grant program, as well as a new center within the Food and Drug Administration to facilitate access to investigational therapies for neurodegenerative diseases such as Amyotrophic Lateral Sclerosis.
If this passes, I, and other patients with ALS, could have access to future treatments. In order to get passed, we need more members of Congress to co-sponsor these bills.
While far removed from my college days in Lincoln, my fear of failure still exists. I have the fear of a failing body. I have a body that no longer allows me to hike. I have a fear of having a body that won’t allow me to take care of myself in the future. I fear that I will be a burden. I fear that we will go into debt paying for equipment, medications and caregivers.
Despite all this gloom and doom, I still maintain hope. If HR 8662 and S 4867 pass, I may get a second chance to hike the 14ers, and believe me, I won’t wait for someday.