PatientsLikeMe is pleased to announce a new collaboration with Karl and Angela Robb, the husband-and-wife team behind Karl’s blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and the authors of two books. You might’ve already seen Karl’s #MoreThan story. Karl and Angela recently shared even more with us in… Continue reading “Dealing and healing” together: Karl and Angela Robb team up with PatientsLikeMe and share about living with young-onset Parkinson’s disease
Category: Parkinson’s Disease
Author, Reiki master, inventor, husband: Guest blogger Karl Robb shares why he’s #MoreThan Parkinson’s disease
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
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
“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
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
Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results
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… Continue reading Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results
“I would just like to understand the ‘why’” – a conversation with PD community member dropsies
Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in… Continue reading “I would just like to understand the ‘why’” – a conversation with PD community member dropsies
Coping with Changes in Physical Appearance
When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions. But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience. For example, how do you deal with hair loss, facial swelling, weight… Continue reading Coping with Changes in Physical Appearance
A Patient Poem for the Modern Age
Can you be friends with someone you’ve never met in person? The members of our online health community – now 300, 000+ patients strong – think so. In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone. As evidence, here… Continue reading A Patient Poem for the Modern Age
Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter
PatientsLikeMe member Bev Ribaudo (“YumaBev”) was diagnosed with Parkinson’s disease (PD) at age 47, but it hasn’t dampened her flair for comedy. “Humor comes naturally to me, and a little disease like Parkinson’s can’t take it away,” she says. In fact, her condition has given her a new purpose: entertaining other “Parkies” with her deep… Continue reading Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter