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Family comes first for 60-year-old Denise C. With her husband, five children, three grandchildren and another grandchild on the way, Denise has devoted her life to raising her kids and building strong ties and unity.
“My biggest passion in life is my family,” said Denise.
Denise regularly worked out at a fitness center in Chicago to stay healthy and fit. However, one day her trainer noticed Denise was unable to swing her arm during her workout. Denise also was experiencing a tremor in her thumb.
Denise’s trainer urged her to see a neurologist. She learned she was in the beginning phases of Parkinson’s disease, a progressive movement disorder that impacts the nervous system and parts of the body controlled by the nerves. Early symptoms include tremors, stiffness or slowing of movement.
Despite her diagnosis, she yearned to stay active and involved with her family. She wanted to maintain the ability to pick up her grandchildren and to get down on the floor to play with them.
She came to Shirley Ryan AbilityLab to learn how to proactively manage and delay the progression of Parkinson’s disease — so she could keep focused on her family.
Proactively Managing Parkinson’s Disease
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Denise started as an outpatient in Shirley Ryan AbilityLab’s Parkinson’s Disease & Movement Disorder Program, initially seeing Miriam Rafferty, PhD. Dr. Rafferty is a physical therapist and research scientist who works with people with Parkinson’s disease.
Every six to 12 months, Denise participated in tests with physical therapists, occupational therapists and speech-language pathologists to track if the disease had progressed against the baseline when she was first diagnosed.
For example, Denise did 6-minute walk tests at each visit to see if she was walking more slowly or more quickly against her baseline, and she also saw speech-language pathologists to determine if the disease was impacting her speech.
Denise said Dr. Rafferty “changed her world” by sharing research about how consistent exercise can help delay the progression of Parkinson’s disease. Dr. Rafferty referred Denise to Shirley Ryan AbilityLab’s Adaptive Sports & Fitness Center located in downtown Chicago.
Exercise and Education
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For the past five years, Denise has spent nearly every weekday at Shirley Ryan AbilityLab. She works in one-on-one sessions three days a week through the Goldman Functional Fitness Program. In this program, exercise physiologists help Denise focus on strength, balance and mobility — while explaining the benefits of the exercises — and help her make progress toward her functional goals.
Denise also participates in Shirley Ryan AbilityLab’s Proactive Parkinson’s Disease Exercise Program two days a week — a class designed for individuals in the early stages of Parkinson’s disease.
“They show me how to do an exercise — like for getting in and out of a car or reaching a top shelf — and they also say why the exercise helps,” said Denise. “It’s both exercise and education. They’ve created a lifestyle for me that gives me hope.”
Participating in Parkinson’s Disease Research
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As part of Shirley Ryan AbilityLab’s translational model of care, the organization incorporates research into clinical practice. For example, the Parkinson’s rehabilitation research group, led by Dr. Rafferty, has a remote exercise monitoring study that is currently recruiting participants.
For Denise, participating in Parkinson’s disease research is an aspect of the experience at Shirley Ryan AbilityLab she says she loves.
Denise has worn experimental sensors to try to stop tremors through electrical stimulation, in research led by José Pons, PhD, the scientific chair of the Margaret and Mark Stephan Legs + Walking Lab at Shirley Ryan AbilityLab. She also participated in a study led by Dr. Rafferty about employment and Parkinson’s disease to determine how the disease affects patients at work.
Finally, Denise was part of exercise-based research, where she wore a monitor to track her exercise. Once a week she reported how much she exercised, how she stayed motivated and how exercise impacted her mood.
Continued Exercise Pays Off for Denise
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Denise said she has been thrilled to see results from her exercise regimen at Shirley Ryan AbilityLab, in combination with medication prescribed by her neurologist.
At her regular neurology appointments, Denise receives a score on the MDS-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS), which evaluates various motor and non-motor effects of Parkinson’s disease on a scale of 0 to 260, with zero indicating no disability.
Over time, Denise’s score dropped from 33 to 19, and now is down to 12.
“I am at my lowest score in two to three years. My doctor said keep up the exercise and I’ll see you in four months,” said Denise. “I don’t know who was more excited, me or him. This exercise, it works!”
Reaching for New Heights & Time with Family
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Now, Denise says her goals continue to be slowing the progression of Parkinson’s disease and staying consistent with her workouts and exercise classes.
After an emergency surgery — unrelated to Parkinson’s disease — resulted in a five-day hospital stay and a summer-long recovery for Denise, she set a new fitness goal for herself: participating in Shirley Ryan AbilityLab’s SkyRise Chicago, an annual stair climb at Chicago’s Willis Tower in support of the hospital.
Denise climbed 105 flights of stairs, completing the challenge in less than an hour. She plans to participate again and climb with the 541 Stairbanks team in 2024 — and hopes to beat her time this year.
Above all, Denise is motivated by her family and relishes every small and memorable moment with them while managing Parkinson’s disease.
She recently took her grandson to the park. He invited her to climb up a slide and then to slide down it with him — and she did it with ease.
“That’s really what I’m doing this for. I want to have that time for my kids and grandkids,” said Denise.
Interested in climbing with SkyRise Chicago this year?
