As part of our ongoing #MoreThan series, we’re continuing to highlight patients’ stories of all the ways they’re more than their diagnoses. Here, Cathy Chester – blogger, wife, mother and advocate – shares her diagnosis story and how she’s much more than MS. When I was in my 20s I was thrilled to work for… Continue reading #MoreThan multiple sclerosis: Guest blogger Cathy Chester’s journey as a writer, mom, advocate and optimist
Tag: patient advocacy
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
“I finally feel like there is hope for me to have a life that has purpose.” – Member Robin shares her story living with complex PTSD
Robin (survivinglife) is a PatientsLikeMe member living with complex PTSD. Recently, she shared her story with us, from her childhood to now, delving into the hardships she’s faced and how she continues to find the courage to forge through. Content within this story may be triggering for some readers. Here’s her story… I am a… Continue reading “I finally feel like there is hope for me to have a life that has purpose.” – Member Robin shares her story living with complex PTSD
What’s your #MoreThan story? 11 patients – and counting – share theirs in a new video series
You’re more than your than your condition. You’re you – a father, a sister, a Nana, a spouse, a dog Mom, a sports fan, a professional singer, a veteran businessman, a traveler, a devoted friend, a furious yet hopeful fighter. You play countless roles, and patient is just one of them. There’s power in your… Continue reading What’s your #MoreThan story? 11 patients – and counting – share theirs in a new video series
“Always know that you are not alone.” Member Debbie shares about life with PTSD
As a “happily married mom of three and grandmother to four,” Debbie works each day to remain active and positive, filling her time with the things she loves, like crocheting, baking and helping others to see there is a light at the end of the tunnel. “I try very hard each day to stay… Continue reading “Always know that you are not alone.” Member Debbie shares about life with PTSD
“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
It’s Clinical Trials Day, and patients are driving change
Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed. Bringing the patient voice to clinical trials has long been part… Continue reading It’s Clinical Trials Day, and patients are driving change
Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions
In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds… Continue reading Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions
“Every morning that I wake up feeling well is a day to celebrate life.” Revisiting member Gloria’s journey
We first met member Gloria (Glow4life) in 2015 when she shared her journey on the PatientsLikeMe blog. She opened up about her experiences from receiving a lung cancer diagnosis (adenocarcinoma), to the sudden loss of her husband and going through several rounds of treatment. Despite it all she never gave up hope, and two years… Continue reading “Every morning that I wake up feeling well is a day to celebrate life.” Revisiting member Gloria’s journey
“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