When Scott Beck was diagnosed with Parkinson’s disease in 2014 at age 47, his initial reaction was a mix of concern and cautious acceptance. “I wasn’t devastated but also not happy,” he recalled. At the time, he was experiencing tremors and memory loss — two hallmark Parkinson’s symptoms. But over time, new challenges emerged, including involuntary movements and auditory hallucinations.

Over the past 11 years, Scott has found the best way to manage his Parkinson’s is through research and communication with his neurologist. Here is Scott’s story.

Surprising Symptoms

After receiving his Parkinson’s diagnosis, “I was worried about the disease progressing and didn’t know what to expect,” Scott said. One unexpected symptom was auditory hallucinations: “I thought I kept hearing a small dog barking at my bedroom door, even though I knew I didn’t have a dog.”

Scott shared that he was most surprised when he started developing involuntary movements, which he described as “so bad that I found myself apologizing to people for them.”

Research and Self-Advocacy

From the beginning, Scott took an active role in understanding his condition. To learn more about Parkinson’s and how to manage it, he relied on online research and conversations with his neurologist (a doctor who specializes in diagnosing and treating diseases of the brain, spinal cord, and nerves). “That and asking my neurologist questions” were key to navigating the uncertainties of the disease, he said.

Scott’s proactive approach informed his response to the increasing severity of his involuntary movements. He took the initiative to learn more about his options. After reading about various treatments, he approached his neurologist and asked to try a new medication regimen.

The change made a remarkable difference. “Now I have to tell people that I have Parkinson’s or they wouldn't know — unless I forget to take my medicine, of course,” he said.

Scott emphasized the importance of self-advocacy. “Don’t be afraid to ask your doctor to make changes if your condition worsens,” he advised. This approach led to a huge boost in his quality of life.

Advice From Experience

Scott looks back on the past decade since his diagnosis with a deeper understanding of what it takes to live with Parkinson’s. If he could offer one piece of advice to someone newly diagnosed, he said it would be this: “Make sure your doctor gets you on the medications that best work for you.”

Connect With Others

On MyParkinsonsTeam — the social network for people living with Parkinson’s and their loved ones — members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s.

What medication changes have made the biggest difference for your symptoms? Have you ever experienced a surprising or unexpected symptom? Share your experiences in the comments below, or start a conversation by posting on your Activities page.