PIERCE — Each morning Dawnn Tucker takes a quick inventory of the tasks she can still perform, and every night she goes to sleep thankful for what she was able to do that day.
She never knows what abilities she might lose from one day to the next.
“Every day is my best day,” the Pierce resident said. “Tomorrow I could wake up and maybe not be able to move my left hand or be able to walk anymore.”
The uncertainty she faces comes with the diagnosis that blindsided her a little over a year ago: Amyotrophic lateral sclerosis (ALS), a fatal motor neuron disease where the nerve cells in the spinal cord and brain progressively degenerate.
Tucker knows the grim nature of the disease, how it will continue to steal her life one motion at a time: “It’s not the disease you want. I would not wish this on my worst enemy.”
But that doesn’t mean she’s going to let it take her without a fight.
Slowing an active life
At 58 years old, Tucker has a lot going on. She has a husband and two married daughters, a library to run and a strong desire to live life on the go.
“I’m a very active individual,” Tucker said, sitting at her desk at the Lied Pierce Public Library, where she’s worked as the director for 22 years. “I’m not one to sit idle.”
It was a fitness app that offered Tucker her first clue that something was amiss with her health back in 2020. That’s when she noticed her jogging pace had significantly decreased, a frustration she initially blamed on her arthritic knees.
Four years earlier, she had contemplated knee replacement surgery but opted instead to stay active as a way to hold off the procedure until she felt ready. But in four years’ time, Tucker’s pace on a mile run had slowed by six minutes and running had become such an effort she’d begun to stumble.
“I wasn’t getting my foot picked up,” she said. “My toe would catch, and I’d kind of flail a little bit.”
By October 2020, the flailing had become so frequent that Tucker would look around to make sure no one had seen her. And it was getting more difficult to catch her balance.
“I thought my knees were wreaking havoc,” she said.
Increasing weakness
Tucker eventually decided to stop running, which provided what she believed was a logical reason for not being able to rise on her tiptoes to look out the window on her front door one day in March 2021.
“I chalked it up to I wasn’t running so I’d started losing muscle,” she said.
That sent her on a mission to find exercises that would strengthen her legs and feet and to research what might be contributing to her situation.
Ironically, Google did not provide the worst-case scenario answers when she looked up possible causes for her symptoms. Instead, Tucker’s search led her to believe she had a compressed perineal nerve, which led her to an orthopedic doctor who performed a nerve conduction test that showed foot drop in both feet.
“It was severe. I couldn’t dorsiflex with my left foot,” she said.
In October 2021, she had surgery to decompress her left perineal nerve and scheduled another surgery for the right side to take place in spring the following year, but in the meantime, Tucker fell backward on some stairs and broke her wrist and elbow.
Tucker called them “good breaks” because they didn’t require surgery, but she also had been experiencing weakness in her left hand, too. That weakness grew worse in the process of recovery from the break.
“I figured it was carpal tunnel,” she said.
A gut punch
Tucker said a physician assistant at the office of Norfolk hand surgeon Dr. Tristan Hartzell realized the seriousness of her situation first. After taking X-rays during an appointment, the physician assistant stepped out of the room a couple of times and eventually asked Tucker if she would mind waiting to be seen by the surgeon even though she wasn’t on the schedule.
“I was like, ‘No problem.’ I figured it would be a complicated (carpal tunnel) surgery because I don’t make things easy,” she said.
But when the surgeon came into the room, Tucker said, he took one look at the atrophy on her hand and identified her issue as neurological. That could have meant anything from multiple sclerosis or Parkinson’s to ALS. But the hand weakness and atrophy, combined with foot drop she’d been dealing with, pointed toward the worst-case scenario — ALS.
“Talk about a gut punch. I had nothing on my radar,” Tucker said.
‘So many things made sense’
There is no blood test to determine whether or not a patient has ALS, but the morning after seeing Hartzell, Tucker received a thorough exam from Dr. Zara Fatima, a neurologist in Norfolk who performed a nerve conduction and electromyography tests to measure the muscle response to nerve stimulation.
Tucker said before the results of those tests came back, she knew the clinical diagnosis would be ALS. “I knew because so many things made sense,” she said.
Despite the devastating nature of the diagnosis, Tucker said she felt grateful because Hartzell and Fatima were able to put a name to the monster that had been robbing her of her abilities little by little as time went on.
The diagnosis also gave Tucker a clearer view of her life’s timeline: “People with ALS — (life expectancy) is usually two to five years from diagnosis,” Tucker said. “I’m a little over a year from my diagnosis, but I can look back and I’m almost three years — maybe a full three years — since I’ve had symptoms.”
But the seriousness of the diagnosis did little to extinguish the independence and stubbornness that fuel Tucker’s fight to slow progression of the disease. Within weeks of learning she had ALS, Tucker found herself under the care of Dr. J. Americo Fernandes, the program director of the University of Nebraska Medical Center’s ALS multidisciplinary clinic, and in a medical trial: Regimen E, receiving a weekly infusion of a drug called Trelahose.
“I’m very blessed to have (Dr. Fernandes) on my side,” she said.
Tucker said she completed 24 “blinded weeks” and 22 “unblinded weeks” on the trial before the small pharmaceutical company ran out of funds and the open-label participants were discontinued.
“They’re still continuing the blind (study),” she said. “By the end of summer, everybody will be done and hopefully it helped.”
She continues to take the three drugs approved by the FDA for the treatment of ALS, but Tucker said it’s tough to gauge if or how much anything is slowing the progression of the disease.
“Are they working? I don’t know. I’ve had progression in this last year, but would I be worse without them? Would I already be in a power chair? There’s no timeline. Everybody progresses differently,” she said.
In mid-May, Tucker learned she was approved for another drug trial: Regimen F, which she will begin on Friday, June 9.
“With research and medication, I’m going to try to do anything to try to slow it down. The research might not help me, but hopefully somebody else that gets diagnosed, it will help them.”
She has donated samples from her spinal taps for research, and she intends to donate her brain and spinal cord for research postmortem.
“It might as well go to research. If it can help somehow — we’ve got to figure something out. This disease has been around way too long, and we haven’t gotten very far,” she said.
Improvising on life
Tucker’s life continues throughout the fight.
On May 13, she watched her youngest daughter, Rachelle Fisher, graduate summa cum laude with a doctorate of veterinary medicine from Iowa State University. It’s one of those big life events Tucker said she feels grateful she was able to see.
Since her diagnosis, Tucker has met and developed friendships with others who have ALS. Some of those she has met are much younger and have young children.
“I’m thankful my children are grown,” she said.
The uncertainty of the disease’s speed of progression has led Tucker and her family to find ways to improvise so she can remain independent for as long as possible. She’s been doing voice banking, so she will have a computerized voice if she can no longer speak. They’ve also modified their home and acquired equipment that will be necessary as her mobility slips away.
One of the hardest aspects of having ALS for Tucker is accepting the fact that she will lose her independence, but she’s grateful for her husband, Joe, and daughters, Danielle McRell and Fisher, and for the support and encouragement she has received from friends and her community. She knows her family will need that added support and encouragement as time goes on.
Despite the struggles that lie ahead, Tucker said she tries to remain positive. She leans on her faith to help navigate the progression of the disease, and she tries to live her life with purpose in each moment.
“We never know what tomorrow is going to bring, but we all need to treasure today,” she said.
