Jennifer Rhode was known to push her physical limits in the gym regularly and hiking the lengthy trails at Starved Rock State Park on a near-weekly basis.
Today, she struggles with tasks such as adjusting her hat or getting around her Ottawa home.
Her condition was only slightly noticeable at first.
“I started noticing things were just off,” Jennifer said. “Like, I’d be working out and things were just harder than they should have been for me.
“At first I thought I was just out of shape or something and brushed it off,” she added. “It was really minor.”
But her muscle strength only continued to deteriorate to the point where she has lost nearly all muscle strength in her hands as well as weakened muscles in her legs and some difficulty speaking. Now, at age 34, she navigates with a walker at home and a wheelchair in large crowds.
What is ALS?
After a number of doctor visits and a trip to the Mayo Clinic, she was diagnosed with the terminal illness Amyotrophic Lateral Sclerosis (ALS) on July 20, 2017.
It’s a date she and her mother, Pam Margis, remember with little thought.
“When we went the first time to Mayo, she looked at me and said ‘I hope it’s not ALS,’ ” said Pam through tear-filled eyes. “And then when we went back we were told it was. It was pretty emotional.”
They had been familiar with the disease and the 1942-film “The Pride of the Yankees,” which honored New York Yankees first baseman Lou Gehrig, who died at age 37 from ALS, which is also known as Lou Gehrig’s disease.
The ALS Association describes the disease as being a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, which causes motor neurons to die. As the motor neurons die, the brain is unable to control muscle movement that eventually leads to the inability to perform actions such as speaking, eating, moving and breathing.
The disease is often seen in those older than 40, but Pam said it's becoming less rare in general and is familiar with others as young as 27 being diagnosed with ALS.
Jennifer first noticed symptoms while in the gym but eventually they progressed to her other passions, which included her work.
Community stepped up to support Rhode
She started as a counselor for Earlville High School for six years and then at Ottawa High School for two years.
“I just really liked working with kids and being in the school environment,” Jennifer said of her employment.
Eventually, she began to develop a limp and decided to end her career at the end of the last school year — and publicly announce beforehand she was diagnosed with ALS.
“She’s a private person so for her to go and write a very nice explanation of what was happening to her, that took a lot,” Pam said. “Everyone just started coming around to be involved as much as they could.”
Within two months the family had raised $20,000 and encouraged around 100 friends and family to participate in Les Turner ALS Foundation's ALS Walk for Life in Chicago last year.
“It helped us,” Pam said. “It kept our minds going. Little things have helped us look forward and everyone has been so amazing.”
The “Team Rhode to a Cure” effort was so successful she is invited to take part in the festivities again this Saturday, this time as team chair. It will include a speech from the family during the opening ceremonies and they will lead the walk.
Jennifer said it’s a fun, upbeat day to meet with others and participate in activities for children.
Rhode visited locations on 'bucket list'
The family spoke highly of the foundation, which is able to provide walkers and wheelchairs as well as little things, such as a bar for access to the bed. They also send a nurse that comes to the home despite it being 50 miles out of their official district.
In addition to raising funds and awareness in her community, she’s attempting to get into trials with the Mayo Clinic that will conduct research to help understand the disease and possibly help others in the future.
She’s also spending a lot of time traveling around the country and visiting sights she had previously planned to visit later in life.
Her younger sister, Melissa Zeller, said the five sisters all flew to Seattle and took a road trip down the west coast to San Diego.
“Jen’s always wanted to do that so it was like a bucket list,” Melissa said.
Jennifer added she also visited Nantucket, Mass., last year with friends and Savannah, Ga., just a couple weeks ago.
A gift plaque from a former co-worker at Earlville High School rests on the mantle by the door which reads, “I may have had a tough break but I have an awful lot to live for" which is quoted to Lou Gehrig.
Jennifer said ALS is typically fatal within three to five years, but she prefers to keep her mind focused on her more immediate future with friends, family and her husband, Grant.
“I try not to think about that and just enjoy every day with my family and friends doing things I like,” Jennifer said. “I have an amazing support system and am so lucky.”
Jennifer invites all interested in attending and supporting the effort to walk with them in Chicago. The festivities begin at 9:30 a.m. with the walk starting at 11 a.m. Saturday at Soldier Field.
For more information or to donate, visit events.lesturnerals.org/goto/TheRhodeToACure.