A Balancing Act: Caregiver, Advocate, Husband

For Roy Weinberger, caring for his wife Wendy throughout her 12-year journey with Parkinson’s disease required on-the-job training. “No one is schooled in how to be an advocate or a caregiver,” he explains. “Luckily, I had some skills I could adapt.”

Roy enjoyed a long career as an investment analyst. Wendy was a library director. Both were natural researchers and they applied that experience to their new challenge: finding the best treatment. Their first big step was meeting Dr. Sanjay Iyer. “We were in Georgia when Wendy was diagnosed,” Roy recalls. “Our daughter lives in Charlotte, and she’d heard of him. We began seeing him while we were still four hours away.”

Dr. Iyer was immediately impressed by the Weinbergers, who relocated to Charlotte and followed him to MMC. “Roy always came to appointments with ideas and questions. He kept detailed records and even captured videos on his phone to show me Wendy’s reaction to different medications. He was always reading, learning and adapting to the next phase.”

Roy provided the kind of objective data that helps physicians more fully understand how patients are responding to treatment, and what adjustments may be needed. “Roy’s notes about medication timing and dosage, combined with the videos, helped us make better-informed decisions and predictions as a team,” explains Dr. Iyer.

Roy and Wendy’s journey wasn’t all about data. Roy recognized that he had to step out of his caregiver role to nurture their relationship as husband and wife, and to give himself time to decompress. They accepted offers of help from friends and family, and spent time together making music, watching home videos, taking virtual tours of museums, and even a virtual vacation to Machu Pichu. “The pandemic actually made it easier to do a lot of things without leaving home, and we really enjoyed that,” Roy recalls.

Wendy passed away almost a year ago, and Roy is facing his next chapter confident that she received the very best care available, and ready to help others.

Roy Weinberger shared his story in our October, 2021 Take Charge Live workshop: