When JP Bremer saw “John Wick” with his father this weekend, he noticed his chair shook during intense scenes.
“My elbow was on the armrest next to my dad’s,” said Bremer, a UF exploratory sophomore. “I looked over, and the whole right side of his body was shaking.”
Bremer’s 60-year-old father, Fred, was diagnosed with Parkinson’s disease in 2012.
“Whenever he gets kind of nervous or stressed about something, he starts to shake,” the-19-year-old said. “Just knowing that it’s going to get worse later on in life is a big challenge.”
Bremer felt somewhat relieved when he heard about CareMAP, a free online guide to caring for people with advanced Parkinson’s disease. The website, announced by the National Parkinson Foundation on Wednesday, gives family members and caregivers suggestions on how to handle problems related to advanced Parkinson’s.
“There’s a lot of information on things I haven’t even considered yet,” Bremer said. “I like that I’ll have a website there for reference when I need it.”
Dr. Michael S. Okun, national medical director of the National Parkinson Foundation and professor at UF Health Shands, helped produce the resource.
Parkinson’s patients are highly dependent on care partners, and research has shown that the greatest success of patients hinges on care-partner quality, Okun said.
He believes CareMAP, which uses articles and videos to supply information about living with and caring for people with Parkinson’s, will improve caregiver quality.
There are six main categories of care on the website, including home care, outside assistance and long-distance help.
Leilani Pearl, vice president of communications at the foundation, said the interactive content allows family members and caregivers to set their own pace for helping patients.
“Everyone’s at a different stage when it comes to advanced Parkinson’s, so it lets you access the bits of information that are relevant to you in that moment in time,” she said.
The foundation plans to publish a complementary print resource, which would be an update on the original book and manuals used to form the website, Pearl said. The publication should be available in December.
[A version of this story ran on page 5 on 11/19/2014]
