Medication, symptoms top concerns of Parkinson’s community: Survey

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.

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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.

Also, one-quarter of participants went to the emergency room or were hospitalized in the previous year, but only 38% were aware of the Parkinson’s Foundation Hospital Safety Guide. The guide offers tools to help people with Parkinson’s advocate for the best care during hospitalization.

Additionally, while awareness of PD GENEration — an initiative offering free genetic testing and counseling to Parkinson’s patients in the U.S. — is increasing, only half of English speakers and 33% of Spanish speakers knew about the study. Among those aware and eligible for the study, about 60% of English speakers and 32% of Spanish speakers participated.

Participation in other studies was also low — 30% of English speakers and 18% of Spanish speakers. Reasons pointed out by survey responders for not participating in research included a lack of discussion from the care team and barriers related to eligibility, time, and traveling.

Participants also pointed out that exercise programs and mental health resources were lacking. Additionally, while digital tools may help with learning, managing symptoms, and care, many participants are unaware of these tools or do not know how to use them.

When asked which policy issues matter most, respondents cited increased research funding (48%), environmental risk factors (36%), access to care (32%), and pathways for treatment approvals (29%).

Overall, this survey shows that people want more trusted information about symptoms and treatment strategies, and many need more help getting care and support and preparing for a Parkinson’s appointment. Also, people need more tools to understand how to participate in research studies.