Remember Bev (YumaBev), who we met back in 2012, after she’d just had deep brain stimulation (DBS) surgery? She told us about her blog Parkinson’s Humor and a book of stories from her blog, Parkinson’s Humor: Funny Stories about My Life with Parkinson’s. Well we recently caught up with her again to see how things… Continue reading Checking in with member Bev – “Laughter and comedy are still a huge part of my health management.”
Category: Parkinson’s Disease
Meet Gary from the PatientsLikeMe Team of Advisors
Meet Gary (tupelo), a husband, father and grandfather who lives with Parkinson’s disease. Gary’s also a member of the 2016-2017 Team of Advisors. He believes that physical exercise slows the progression of Parkinson’s and practices Tai Chi and Qigong on a regular basis. Check out Gary’s story and his outlook on life with Parkinson’s: “Accepting… Continue reading Meet Gary from the PatientsLikeMe Team of Advisors
PatientsLikeMe Welcomes Next Patient Team of Advisors
CAMBRIDGE, Mass, November 14, 2016—PatientsLikeMe has named 11 members to its patients-only 2016–2017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners. “Each year, our Team of Advisors has proven… Continue reading PatientsLikeMe Welcomes Next Patient Team of Advisors
Patients as Partners: Member Jeff on teaming up with your doctors
This year, the Team of Advisors has been thinking about partnerships in healthcare. They introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — medical students, clinical trial coordinators, and “normals.” Now, they’re each sharing personal stories about these principles in… Continue reading Patients as Partners: Member Jeff on teaming up with your doctors
“Seesawing Libidos”: A podcast for Parkinson’s Awareness Month
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… Continue reading “Seesawing Libidos”: A podcast for Parkinson’s Awareness Month
Meet Jeff from the PatientsLikeMe Team of Advisors
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… Continue reading Meet Jeff from the PatientsLikeMe Team of Advisors
A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
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… Continue reading A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
Recapping with our Team of Advisors!
Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team… Continue reading Recapping with our Team of Advisors!
Update and results – the Patient Voice Analysis study
About a year ago, the PatientsLikeMe Parkinson’s disease (PD) community started something totally different: a study to compare the sound of their voices to their self-reported PD Rating Scale (PDRS) on PatientsLikeMe. It’s called the Patient Voice Analysis (PVA), and we teamed up with you, Max Little, Ph.D. and Sage Bionetworks to get it done.… Continue reading Update and results – the Patient Voice Analysis study
You can make a difference in April
Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month? Listen to Leslie Chambers, the president and CEO of the American… Continue reading You can make a difference in April