Member Gloria (sunshine221) has been here almost since the start. The Parkinson’s Disease (PD) community on PatientsLikeMe launched in 2007, and Gloria joined in 2008. We recently caught up with her about her early days with PD, how she has used PatientsLikeMe through the years and what she’s up to now.
Early days with PD and finding PatientsLikeMe
Gloria had been dealing with walking problems for four years, and was initially diagnosed with spinal stenosis. After having surgery for that, she was diagnosed with PD. She had to shift gears, in terms of finding support online.
“Another web board that I was using was great for the spinal stenosis but their Parkinson’s section was inactive,” she says.
“I liked PatientsLikeMe’s tracking sections and how it matched with what the doctors were asking.”
Gloria notes that HIPAA laws made it harder for doctors to connect patients with each other, so meeting people with PD online (and in in-person support groups) was key.
“PatientsLikeMe lets me share with people of similar age and illness progression, and when I might be feeling discouraged it gives me a source of hope,” she says.
Using PatientsLikeMe through the years
Early on, Gloria turned to the website for members’ drug evaluations (noting some frustration over the delay in being able to track Rytary XR – but that is possible now). Over time, she has used the site for tracking her own condition and helping others who’ve joined the community.
“I often look back at the historical data – sometimes it’s frustrating, other times encouraging,” she says. “I mostly look at my own data but if I’m trying to answer another poster’s question, I might look at their data to see what else might be happening with them.”
She has used her data to help people offline, too, including at her support groups. The wife of a local retired dentist with PD needed more information about the condition.
“So I gathered literature from my file and brought it up to her yesterday,” Gloria says. “This just shows that people from all backgrounds need education and support.”
Meanwhile, Gloria has continued to make strong friendships through the forums.
“The regular posters come to feel like family.”
Gloria says she has met up with fellow PatientsLikeMe members at the World Parkinson Congress in Montreal (2013) and Portland, Oregon (2016).
What’s she up to these days?
“It’s been over 10 years that I’ve had Parkinson’s,” Gloria says. “Looking back, I’ve been lucky that the progression has been slow.”
Gloria and her husband recently retired but continue to do some consulting work. They divide their time between their home in upstate New York, a winter home in Florida and a family retreat in the Catskill Mountains. She travels, exercises, maintains a personal blog, and even exhibits her work in art shows (top photo).
“My mantra is ‘use it or lose it,’” she says. In addition to encouraging others with PD to exercise and stay active, she also recommends: using a movement specialist, keeping legal documents (will, power of attorney, and healthcare proxy) in order, and educating adult children about the condition and its possible long-term progression.
Gloria fears her condition will get worse and her grandkids could be afraid of her PD (because she witnessed this with an aunt who had ALS), but she remains hopeful.
What brings her the most joy? “Spending time with friends and family, and watching my 2-year-old granddaughter learn – and hoping that there will be more grandchildren to come in the next few years.”
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