Coping with ALS, also known as Lou Gehrig’s disease, is not easy, but a local family has received so much help through a nonprofit group that they want to give back. Now, they’re asking the community to help.
Ryan Bell of Morris is team captain of “Lori’s Legion,” a group of at least 46 who will walk the 2 miles along Chicago’s lakefront and through Soldier Field at the Sept. 15 Les Turner ALS Foundation’s ALS Walk for Life.
The team is walking for Bell’s mother, Lori Hoover of Mokena, who was diagnosed with the neurological condition in May.
Bell said his mother began having some strange symptoms in November 2018.
“Her hand was starting to lose strength,” he said.
That’s when Hoover began appointments with a string of physicians for tests. Ruling out several other disorders eventually got her an appointment with a neurologist at the Les Turner ALS Center at Northwestern Medicine, where her ALS diagnosis was confirmed.
By that time, the condition had progressed to muscle spasms that were spreading throughout her body. Her speech was labored and her right hand was very weak.
ALS, amyotrophic lateral sclerosis, is a progressive, degenerative disease affecting the motor neurons, which are nerve cells that carry signals to the muscles. The condition causes motor neurons to die. As this happens, the muscles gradually begin to waste away. There is no cure for ALS.
Bell said that by the time the process of elimination of other diseases led to the diagnosis, his mother was just glad to have a name for what she was going through.
“She was more worried when she was going through all those tests than when she got the diagnosis,” Bell said. “When she got the diagnosis, I think she felt relief just to know. She wasn’t crushed. ... Even with a disease that’s taking her body, she never had a moment where she was leveled by it.”
His mother has always been active, he said, never one to sit back. Even during time off from her job in the ordering/shipping department of a security systems business, she helped Bell and his wife, Lindsey, paint their house or lay a brick path in their yard.
Since her diagnosis, Lori and her husband, Kurt, still are enjoying life, even going camping. She said she wants to try kayaking, too.
The past few weeks have been a bit better for her, as well, since she began a relatively new medication.
“Life has changed,” Lori said, “but I try to do as much for myself as I’m able to. I need help with everyday tasks that most people don’t think twice about doing. For example, someone must cut my food and style my hair. I’m so grateful to have a supportive husband, two sons, a daughter-in-law and my sister, Donna Cain, who help with anything I need.”
Bell said the Les Turner ALS Foundation has helped his mother in many ways, and by contributing to the walk, the foundation can help other families.
“They’ve really been a great resource, as far as walking Mom through the steps,” he said.
Bell is asking the community to support the team’s participation in the Walk for Life. Pledges may be made under the team name of “Lori’s Legion” by logging on to www.lesturnerals.org, and clicking “get involved, attend an event, Walk for Life.”
According to the Les Turner ALS Foundation, someone in the United States is diagnosed with ALS every 90 minutes, and the incidence of ALS is close to that of multiple sclerosis and four times that of muscular dystrophy.
The diagnosis of ALS is a “clinical diagnosis,” meaning there is no specific test for it, according to the site. Tests often will be administered to rule out illnesses with similar symptoms. Those tests may include an MRI of the brain or spinal cord, an electromyography (EMG) study of nerve and muscle function, and a variety of blood and urine tests.
After reviewing these test results and the patient’s medical history, and performing a complete neurological exam, a neuromuscular specialist usually can reach a diagnosis, the foundation said. It may take several months of observation and retesting to reach a definitive diagnosis and that diagnosis should be confirmed via a second opinion from another neuromuscular specialist.
Additional information about the disease and how to support the foundation can be found on the foundation’s website.