Parkinson’s Disease

“Seesawing Libidos”: A podcast for Parkinson’s Awareness Month

Parkinson's Disease, Patient Experiences / By

April is Parkinson’s Awareness Month, and this year we’re getting personal. “Seesawing libidos,” an episode of WBUR Boston’s Modern Love podcast, explores an unexpected side effect of a Parkinson’s medication: an overactive sex drive. The story comes from comedian Marc Jaffe, whose wife Karen was diagnosed with Parkinson’s 15 years into their marriage. Before Karen’s […]

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Meet Jeff from the PatientsLikeMe Team of Advisors

Conditions, Parkinson's Disease / By

Say hello to Jeff, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Since he was diagnosed with Parkinson’s disease (PD) 20 years ago, Jeff does his best to stay active—in both exercise and advocacy. Keeping up with his two teenage daughters is challenging enough, but when he’s up to it, Jeff also golfs, plays

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A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease

Conditions, Parkinson's Disease, Patient Experiences / By

Back in September, Sally Okun, Vice President of Advocacy, Policy and Patient Safety, and community moderator Molly Cotter, attended the FDA public meeting on Parkinson’s disease (PD) along with PatientsLikeMe member Gary (tupelo). We posted some interesting developments from the meeting in the forum, but we also caught up with Gary for his perspective on

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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

2 Comments / Patient Experiences / By

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015–2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing

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Talking brain donation with Dr. Deborah Mash

1 Comment / Patient Experiences / By

Dr. Deborah Mash is a professor of neurology and molecular/cellular pharmacology at the University of Miami School of Medicine. She’s also the director of the university’s Brain Endowment Bank, and she recently spoke with PatientsLikeMe about her research and exactly what goes into donating your brain to science. As she says, “we still know very

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Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

Parkinson's Disease / By

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire. In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth

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Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni

2 Comments / ALS, Parkinson's Disease, Patient Experiences / By

Just about a year ago, we teamed up with Sage Bionetworks and TED Fellow Dr. Max Little for an ongoing Parkinson’s disease (PD) project called the Patient Voice Analysis (PVA).   The big idea: combine data from two sources – phone-based voice recordings and patient reported data from PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS). Then,

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2014 recap – a year of sharing in the PatientsLikeMe community

ALS, Bipolar disorder, Diabetes, Epilepsy, Fibromyalgia, Idiopathic Pulmonary Fibrosis, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Pulmonary fibrosis / By

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys

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