Dr. Gustavo Alva works in both Southern California and Jalisco, Mexico with Parkinson’s disease patients. There is currently no cure for the progressive nervous system disorder and Alva wants to create awareness around the disease for families, especially Latino families, struggling with the diagnosis.
Slow movements, tremors, even symptoms of constipation can predate a Parkinson’s diagnosis by 20 years, Alva said, but the scariest point is often the hallucinations and delusions that can occur with the disease.
To that end, he seeks to amplify the yourstrulypdp.com website which has resource links available and features short, personal narratives recorded through StoryCorps.
StoryCorps is a project which predates the yours, truly site and provides people across the country an opportunity to record and preserve the stories of their lives which are then housed in the Library of Congress along with other locations particular to their topic. In this case, the roughly three-minute long recordings from families living with Parkinson’s disease can be found on the yours, truly site.
Hallucinations and delusions can be a source of shame and stigma, Alva said, especially in Latino families. As a clinician who hears bilingual perspectives, he believes there is an opportunity to raise awareness about “scary things like psychoses” which can be dealt with as part of the illness.
“Unfortunately, one out of two will be affected but nine out of ten won’t speak about it,” Alva said and around 90% of patients don’t proactively tell their physicians about those symptoms. However, putting aside embarrassment and telling the story could help others.
“By sharing one’s Parkinson’s disease story people get to share notes but also comprehend where others are at. The interesting thing is that storytelling is such a granular way of sharing information, expanding information, shattering stigma. Being a Spanish-speaking person, there’s certain cultural nuances and challenges people will have but storytelling is the simplest way of relaying information,” Alva said.
It can be “exceedingly challenging” to get help if you have a different cultural backdrop than healthcare providers, but the project attempts to “shatter the obstacles,” Alva said, and provide a commonality that reaches across languages.
He wants people to realize there is no repercussion for “asking something weird or odd or strange” because others likely have similar questions. Hearing other people’s stories might prompt caregivers to ask different questions at the doctor and at home, but the stories also create a breadth of knowledge that might otherwise remain private.
“The fastest growing group in the United States is the Hispanic community— there’s the sense that ‘my perspective can differ greatly from yours’ but having this commonality, an awareness of an educational platform, knowing there are resources for a family member or caregiver… There is no cure but lack of tools? That has changed,” Alva said.
“We’re trying to create an avenue for people to feel comfort. How are you going to be able to spill out your guts unless it’s done in the tongue you feel most comfortable in? With dementia, people revert back to infancy, same with Parkinson’s— it’s not uncommon for people to lose the second language they learned,” Alva said.
Separately, the stories include unique tales that can serve to educate and inspire on their own merit, yet together they form a collection with the power to reduce the unknown to a familiar refrain; after listening to several stories, patterns start to emerge and an uncertain future living with Parkinson’s might begin to take shape.
“Not everyone’s experience is going to be the same but they all tie in with a commonality— people are suffering needlessly. The onset might vary from one person to the next but the overall theme comes from all these different stories put together. The presence. There are different trajectories, but if one out of two people with Parkinson’s experience a psychotic episode then talking about it exposes that stigma,” Alva said,
Imagine, he said, someone suddenly experiencing a hallucination and how differently they might respond if the situation was less scary for them and how differently their family might respond if the stigma surrounding Parkinson’s related hallucinations was reduced by knowing how common it can be.
“It’s not just about helping themselves. By sharing their own stories they’re going to be helping to better educate others as well as finding additional resources, all on one site,” Alva said.
The Spanish-speaking community needs more resources like this, he said. By sharing a story, whether it is in English or Spanish, the project emphasizes awareness and eliminates some amount of misunderstanding.
“You know, the saying is true: you get more by giving more and if you do good, you’re going to do well,” Alva said.
Visit www.yourstrulypdp.com to learn more or listen to Parkison’s-related stories recorded through StoryCorps.
