The daily impact of Parkinson’s disease through the lens of a care partner

The daily impact of Parkinson’s disease through the lens of a care partner

(BPT) – Kim Pfleeger was ready. Clad in gym clothes, she leaned against the wall outside the locker room, eager to return to the basketball court. Her dad, Randy, would be out any second, and they’d finally settle who really was the best free-throw shooter in the family – or maybe they would just play a friendly game of one-on-one and enjoy each other’s company like usual.

Any moment now, Randy would emerge from the locker room, and it would be game on. But Kim waited. And waited.

Nearly an hour passed before her father emerged.

‘It was very frightening and scary,’ Kim said. She found out later that her dad, who had early-onset Parkinson’s disease, experienced a freezing episode in the locker room, unable to move for a half hour. Kim said this marked a turning point for her as a care partner in her father’s journey with the neurodegenerative disorder. ‘That’s when I really realized he couldn’t overcome some of the symptoms he was experiencing. There were some he could work through but some he couldn’t.’

Every day was different

Randy was diagnosed with Parkinson’s disease when Kim was in high school. She said it was hard for her to understand his shocking diagnosis and how it would impact him since he was such an active person.

As the disease progressed, Randy was forced to rely more heavily on his family. He retired from his job as a trial attorney and went from running to riding his bike to cross-country skiing to swimming, adjusting to stay active for as long as possible. He didn’t want to stay home and watch TV – he was a doer, a talker and a jokester who craved company.

Kim, a Ph.D. and senior scientific director of Neuroscience Development at AbbVie, a research-based global biopharmaceutical company, said she remembers every day being different. Days that Randy rallied were followed by days that seemed especially tough. But Kim said he was never bitter, always looking for solutions and separating himself from the disorder, saying, ‘It’s the disease, not me.’

When the disease progressed to the point where Randy couldn’t physically care for himself, Kim said her stepmom became his primary care partner. She devoted her time to helping him day and night. ‘She had to deal with a lot which took a mental and physical toll. I’ll be forever grateful for the care she gave my father,’ Kim said.

The weight of advanced Parkinson’s disease

Research shows that more than half of caregivers for people with advanced Parkinson’s disease report moderate to severe burden of disease and an impact on their quality of life and overall health.

Dr. Jill Farmer, DO, MPH, assistant professor of neurology, and director, Parkinson’s Disease and Movement Disorder Program, Global Neuroscience Institute, says caring for people with advanced Parkinson’s can result in significant mental and physical strain. ‘From practical matters like medication administration to assisting with hygiene routines, to being their loved ones’ advocates, care partners take on many responsibilities that increase as the disease progresses,’ Farmer said. ‘It’s important for care partners to take care of themselves and their needs – it is not selfish, it is essential. Finding a network of support and methods to reduce stress are vital to caring for yourself and your loved one. It’s critical they have reassurance that it’s hard and completely normal to get frustrated and sad. Realizing they are not alone and sharing experiences helps normalize an abnormal situation. These connections can be made through support groups, therapy, or being honest with family and friends.’

Staying positive

When Randy found out that the company Kim works for is actively involved in Parkinson’s disease research, he was thrilled. ‘He was so proud of me working for AbbVie and that we were investigating therapies for people [like him],’ Kim said.

Despite Randy’s difficult journey and its impact on him and his family, Kim said he always maintained a positive attitude. He would get frustrated at his symptoms, but he didn’t let that stop him from making the most of every day. As he progressed further, eventually developing dementia, Kim said there were still ‘really great’ moments when he was cognizant and engaging with others. She could see him in those moments – her dad was still there, still joking, even if he had changed.

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