Being diagnosed with a chronic neurologic condition is life-changing. If it happens early in life, it can mean the end of a hard-earned career. If it happens later, it can disrupt the way people spend their retirement. It also can be a chance to do something completely different.
“A neurologic disorder sometimes forces people to reconsider their careers and ambitions, and when this happens, it can feel like the sky is falling, because this has been their identity all their lives,” says Kamal Chemali, MD, a professor of neurology at University Hospitals Cleveland in Ohio and a classically trained pianist who treats musicians, singers, and dancers who have neuropathy (damage to the nerves that causes pain or numbness) or dystonia (a disorder that results in involuntary muscle contractions). “Musicians start from the time they are 4 or 5 years old. They are with their instruments all the time,” he says. “When something like this happens, they have to rethink their lives, which isn't easy.”
One of Dr. Chemali's patients, who was the principal clarinetist for a major orchestra, developed hand tremors, and his playing became less accurate. In despair, he thought about quitting music completely. “I told him what a loss it would be,” Dr. Chemali says. “Even if he is no longer able to perform at the level he once did, he can still benefit a new generation by teaching, and that's what he is doing now. He travels the world to give master classes and teach in conservatories.”
Many people with neurologic disorders choose to help other people with similar conditions, says A.M. Barrett, MD, FAAN, chair of the department of neurology at UMass Chan Medical School in Worcester and an expert in brain injury and neurorehabilitation. “In my role with the National Aphasia Association, I met several people who educated the general public about aphasia—that it affects people's language but not their capabilities, competence, or intelligence—and helped others with the disorder understand their rights.”
Reinventing a life because of a neurologic disease can be difficult, but these people have found ways to make meaningful changes.
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During her more than two decades in the Air Force, Nia Mostacero rose to the rank of senior master sergeant, earning multiple degrees and certifications and teaching professional military education. Then in 2016, she began experiencing cognitive symptoms like short-term memory loss, as well as poor coordination and visual hallucinations. “I just wasn't me,” she says. “One day I forgot how to start my car. I thought I might have a brain tumor.”
Mostacero saw dozens of specialists while trying to find an answer to her symptoms, which continued to worsen. “At that time, I was eligible for retirement, and my primary military physician told me that if I didn't retire, I'd be medically retired,” she says. “So I decided to retire on my own terms.”
Four months later, in early 2017, Mostacero was diagnosed with young-onset Alzheimer's disease. She was just 42. “I went into a major depression that lasted about a year,” she says. “I stopped going to church. I was crying all the time. It was a terrible year.”
Finally, Mostacero reached out to the Alzheimer's Association for support and advice and began volunteering for the organization. She stuffed envelopes, screened potential applicants for support groups, and participated in fundraising walks. “I did all kinds of things that lifted my spirits. And then I returned to church and volunteered there,” she says.
In 2021, Mostacero moved from San Antonio, TX, to Meridian, ID, to be closer to her adult son. After settling in, she found a new neurologist, who suggested that Mostacero might not have Alzheimer's disease. Mostacero underwent a specialized type of MRI that measures the volume of brain structures commonly damaged by Alzheimer's disease. “It showed that several parts of my brain were atrophied in a way that was inconsistent with Alzheimer's disease,” she says. When the neurologist learned that Mostacero had sustained blows to the head in childhood due to domestic violence, she told her that the patterns of brain damage seen on the MRI were more likely due to chronic traumatic encephalopathy (CTE), a progressive brain disorder linked to repeated head trauma and associated with dementia. Although CTE cannot be officially diagnosed until after death via autopsy, Mostacero's diagnosis now is “suspected CTE due to traumatic brain injuries.”
Soon after Mostacero moved to Idaho, she was approached by a woman in the community about participating in a fashion show for Black History Month. “I thought, sure! I don't have to use my brain too much. I can do that.” One of the other participants had competed in area beauty pageants, and she urged Mostacero to try out for one. “You have to have a platform for these pageants, and I knew immediately that mine would be raising awareness about dementia,” she says.
She decided to call her platform “Memories Matter: Combating Young-Onset Dementia Stigmas” and entered her first beauty pageant. She enjoyed it and was good at it and continued competing. This year, she was crowned Miss Meridian 2024. That inspired her to compete in the state pageant, where she was first runner-up. She also won the fitness award, the “fabulous face” award, and the best evening gown award. The pageant was challenging, she says. “A lot of sensory overload. But I made new friends, and they helped me with the brain fatigue I got toward the end. And it was so worth it. I made many appearances and raised a lot of awareness that people with dementia can still have purpose and function.”
Buoyed by her success, Mostacero decided to compete in the Miss Elite United USA Pageant, a larger pageant with bigger prizes and more opportunities to spread her message. In September 2024 she was named Miss Elite Idaho United USA, and in June 2025 she will compete for the national title. “Just think about it: a person with dementia winning a national pageant. I think that would show the world that we still have purpose,” she says. “I miss the people and the camaraderie of my military career, but I don't miss the ‘go go go.' I have a calling now, a different sense of mission, and it's based on faith.”
From Surgery to Robotics
In 2012, Joe Salazar had just two semesters of medical school left at the Universidad Autonóma de Nuevo León in Monterrey, Mexico. At the time, the native of Brownsville, TX, was a certified nursing assistant and anticipated a career as a surgeon.
But then he began noticing strange symptoms. “My right hand was very heavy,” he recalls. “I had to use my left hand to help move it.” When his right leg started to drag and his face started to droop as well, Salazar thought he might have had a stroke. He returned to Brownsville and over the next 16 months saw a series of neurologists before receiving a diagnosis of early-onset Parkinson's disease in August 2013. “I cried for weeks,” he says. “I had put my whole identity and so much time and money into my career as a surgeon, and now I didn't know what I was going to be able to do.”
For a time he continued with his nursing assistant position, but by 2018 his disease had worsened enough that he stopped working to focus on exercise and his overall health. Then in December 2020, he contracted COVID-19 and nearly died. He spent six weeks in bed, on oxygen, barely able to breathe. Months into his recovery, he was still using a wheelchair. “I was in my thirties and felt useless,” he says.
Then Salazar remembered something his father told him after his diagnosis. “My father is a hard-core Mexican macho kind of guy. He said, ‘There is no time to waste. You can either sit there and do absolutely nothing, or you can find a way to get things done,'” Salazar says. “It reminded me of my favorite quote from Rocky: ‘It ain't about how hard you hit. It's about how hard you can get hit and keep moving forward.'” That motivated him to learn about robotics and 3-D printing from books and hours of instructional videos.
Not long after Salazar's change of attitude, his neurologist suggested he might be a candidate for deep brain stimulation, a surgery in which a device is implanted that delivers an electrical current to specific areas of the brain to ease movement problems. The operation was a success. “I came in a wheelchair and walked out pushing the wheelchair,” Salazar says.
On his feet once again, Salazar used his hard-won knowledge to start an after-school robotics program at charter schools in Brownsville. He also went back to school to learn computer-assisted design. He began working as a lunch monitor at the Brownsville IDEA Public School, a college preparatory public school system, and a few months later he was hired to teach math and robotics to third-, fourth-, and fifth-graders. He later earned a high school teaching certificate and now teaches at the high school level and coaches after-school basketball.
To manage his disease, Salazar, who is 39, takes two medications and gets plenty of regular exercise. “I box, I do CrossFit, I do whatever I need to do to be able to walk and stay healthy for myself and my family,” he says. He and his wife, Martha, now have a son who is almost 3. “He's my motivation. I do everything for him.”
Salazar often shows his students a video that starts with him in a wheelchair, barely able to lift a one-pound weight, and ends with him vigorously jumping rope and attacking a speed bag at the gym. “I say, ‘You guys are going to learn math here, but I want to make sure that you also learn never to waste your time, because you never know what's going to happen.' I want to help them understand that they should never give up, even when things look really bad. It sinks in a little deeper when they see that video. As long as I can help people and learn from it, I'm happy.”
