February 28, 2022 Patient Story

Yours, Truly Has Stories to Tell: Living With Parkinson’s

Beautiful, personal, heartfelt – this describes the conversations from Yours, Truly, a national, multicultural, storytelling campaign that shares the stories of moms, dads, spouses and other people with Parkinson’s disease as told by their families and caregivers. Established in 2021 to bring greater awareness and understanding of Parkinson’s disease (PD), Yours, Truly is a collaboration between Acadia and StoryCorps, featuring content in Spanish and English.

The stories on Yours, Truly elevate the realities of life lived with Parkinson’s disease while helping to reduce the stigma associated with its non-motor symptoms, including hallucinations and delusions that are experienced by half of Parkinson’s patients. Available at yourstrulypdp.com, the website also provides access to bilingual educational resources from advocacy organizations across the U.S. The stories are thoughtful and sincere, bringing important voices and viewpoints about the journey to others.

Parkinson’s disease affects about 1 million people in the United States, which may present with both motor and non-motor symptoms. Around half of the people living with Parkinson’s disease may develop hallucinations or delusions over the course of their disease, but the majority of people don’t proactively tell their physicians about these symptoms.

Dr. Gus Alva, Assistant Professor at University of California, Riverside Medical School, Department of Neuroscience

Darryl and Pamela

Darryl speaks with his wife and caregiver, Pamela, about the impact of his Parkinson’s related illusions and the importance of maintaining a positive attitude.

In 2022, Yours, Truly will travel with the StoryCorps’ MobileBooth (an Airstream trailer that crisscrosses the country year-round) to welcome more families to record, share and archive their personal stories.

At Acadia, we aspire to enable brighter moments for patients and their loved ones. By preserving and amplifying the voices of those impacted by PD, we can empower these patients and their caregivers to shine through.

Sharing personal stories about loved ones living with Parkinson’s disease may increase awareness of the symptoms while also helping reduce the stigma associated with the disease. As a result of hearing the experiences of others, patients and caregivers may be more inclined to ask for support and discuss potential treatment options.

Dr. Gus Alva, Assistant Professor at University of California, Riverside Medical School, Department of Neuroscience

Yours, Truly ensures that the varied experiences of the Parkinson’s disease community will be preserved for generations to come.

Do you have a story to share about someone living with non-motor symptoms related to Parkinson’s, including hallucinations and delusions? Share it here.