Inspired by our new #MoreThan video series, patients have been speaking up about what makes them more than their diagnoses. Below, Karl Robb — blogger, author and advocate — shares his #MoreThan story about living with Parkinson’s disease. My name is Karl Robb. I have been blogging about Parkinson’s disease for over 10 years on my… Continue reading Author, Reiki master, inventor, husband: Guest blogger Karl Robb shares why he’s #MoreThan Parkinson’s disease
Tag: parkinson’s
Cannabis for PD treatment? Member Ian says it’s something to shout about
Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my… Continue reading Cannabis for PD treatment? Member Ian says it’s something to shout about
Virtual house calls? Dr. Ray Dorsey’s promising research on telemedicine for Parkinson’s disease
What if your next doctor’s appointment involved just booting up your laptop rather than trekking to a clinic or office? Neurologist Ray Dorsey, M.D., M.B.A., is making virtual house calls a reality for people with Parkinson’s disease (PD) and believes “telemedicine” is on the brink of transforming healthcare. “There’s a huge demand for more convenient… Continue reading Virtual house calls? Dr. Ray Dorsey’s promising research on telemedicine for Parkinson’s disease
“It gives me a source of hope”: Gloria’s 9+ years of tracking Parkinson’s disease and making connections on PatientsLikeMe
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… Continue reading “It gives me a source of hope”: Gloria’s 9+ years of tracking Parkinson’s disease and making connections on PatientsLikeMe
“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development
Member Lisa (lcs), a Team of Advisors alum who’s living with Parkinson’s disease, has found her advocacy niche: involving patients in drug development. Diagnosed with PD in 2008, Lisa served as a patient thought leader and co-author of a published journal article called “Increasing Patient Involvement in Drug Development.” She worked on the publication along… Continue reading “My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development
Could the Rolling Stones be part of Parkinson’s disease management? (Check out Pamela Quinn’s blog)
It’s Parkinson’s Awareness Month, and we’re continuing to find meaningful stories in the world of PD. Did you tune into our recent podcast featuring Pamela Quinn – a professional dancer who’s living with Parkinson’s? She teaches dance classes in New York City for people with PD. Now, she’s taking her dance and movement tips to… Continue reading Could the Rolling Stones be part of Parkinson’s disease management? (Check out Pamela Quinn’s blog)
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
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
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