PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician. Out with the… Continue reading “Breaking up” with a doctor after 14 years — Bernadette’s journey to better care
Tag: TOA
Zoodles! Let’s dish on lupus/food + swap recipes
If you’re living with lupus, have you found any particular foods that affect you and your condition — for better or worse? Member Jeanette (JeanetteA6872), a member of the 2018 Team of Advisors who’s living with systemic lupus erythematosus (SLE), shares which ingredients she tries to include or avoid in her diet, plus three of her favorite… Continue reading Zoodles! Let’s dish on lupus/food + swap recipes
Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”
Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.” I’ve always been a sucker for a focus group. Give me some free pizza… Continue reading Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”
Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one
Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she… Continue reading Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one
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