SARASOTA (WSNN) – The symptoms of Parkinson’s look different for everyone. A national campaign called Yours, Truly is connecting people by sharing these stories.
“The saying on the street is if you’ve met one person with Parkinson’s you’ve met one person with Parkinson’s,” said Ellen Schaller, a Care Advisor for Neuro Challenge Foundation for Parkinson’s.
Symptoms of Parkinson’s can affect you physically or mentally. Each person has a unique experience with the disease.
“The non motor symptoms can be apathy anxiety and depression,” said Schaller.
Acadia Pharmaceuticals, a neuroscience company, created the educational campaign Yours, Truly in collaboration with Story Corps. It’s a platform where people living with Parkinson’s can share their stories in both English and Spanish.
“We are a multicultural educational campaign developed to increase awareness of Parkinson’s disease, the non-motor symptoms of Parkinson’s disease and specifically hallucinations and delusions associated with Parkinson’s disease psychosis,” said Claire Judkins Advocacy relations for Acadia Pharmaceuticals.
For one couple, a wife was completely unaware her husband was experiencing hallucinations. By sharing his story through Story Corps, she learned something she never knew.
“This really allows people to open up and share and not try and hide some of these symptoms but have an open dialogue,” said Judkins.
About 50 percent of people with Parkinson’s can experience hallucinations and delusions, which which is not commonly associated with the disease. One of the story tellers says she felt like she was the only one.
“Her comment was ‘I was losing my mobility and I certainly didn’t want to tell anybody that I thought I was losing my mind’ and was therefore keeping it a secret,” said Judkins.
Through the Yours, Truly campaign, resources are available for those experiencing Parkinson’s and their loved ones. Neuro Challenge Foundation for Parkinson’s, is one of them.
“We really try to customize the person’s approach to Parkinson’s and meet them where they are throughout their Parkinson’s journey,” said Schaller.
There is no known cure for the disease, but Schaller says exercising is key to ease the symptoms and continue a enhanced quality of life.
If you are a loved one is living with Parkinson’s you can share your story with Story Corps by going to the Yours, Truly website. For more information you can click here.
