Foundation plans to use results to guide future education and programs
Written by Andrea Lobo | June 23, 2026
- Top concerns of the Parkinson's community's include disease symptoms and medication knowledge, a survey found.
- Motor (tremor, gait, balance) and nonmotor (sleep, mood, cognitive) symptoms were most concerning.
- Respondents cited the need more information on symptoms/treatments, better care access, and increased research funding.
According to this year’s Parkinson’s Foundation State of the Community Survey, disease symptoms and medication knowledge are top concerns for the Parkinson’s disease community.
More than half of the participants identified motor symptoms (61%), especially tremor, gait, and balance issues, and nonmotor symptoms (52%), including sleep, mood, and cognitive problems, as the most concerning.
Participants also expressed interest in learning more about the disease symptoms, treatment options, and research updates. The foundation plans to use these data to guide future education and programs.
“I believe in narrative medicine, where I encourage patients to share their Parkinson’s story — focusing on the symptoms [that] affect them the most and working together to create a personalized care plan that empowers them to take an active role,” Sneha Mantri, MD, Parkinson’s Foundation chief medical officer, said in a press release.
Barriers include lack of knowledge on available services
This year, more than 9,000 responders, mainly people with Parkinson’s (70%), but also care partners, family members, friends, and health professionals across the U.S. and other countries, participated in the survey in English or Spanish. This represents a 30% jump from 2025. The survey provides a global overview of the community’s experiences and needs, according to the foundation.
Another challenge reported by participants was understanding which questions to ask and symptoms to talk about with their healthcare team. Many considered it difficult to discuss mental and emotional health. Most people also noted only spending 15 to 30 minutes with their provider.
The most commonly reported barriers included a lack of knowledge on available services and how to access them, and difficulties getting appointments or having to travel long distances to get care. For Spanish speakers, barriers included service costs, language issues, and insufficient available services.
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