Difficulty with speech and communication is a frustrating reality for many living with ALS. From apps to devices and voice banking, communication is a popular topic (as in over 35k conversations) on PatientsLikeMe, so we took a closer look into some of the options out there for pALS. Tablets: Windows vs. iPad vs. Android Trouble with typing… Continue reading Communicating with ALS: From devices to voice banking
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Shout out to The Golden Girls: Shows and movies that “get” chronic illness
‘Tis the season for binge-watching — but the media often flops in its portrayal of people with health conditions. So we’ve gathered patient perspectives on Hollywood depictions of illness and who’s gotten it right (thanks, Bea Arthur). When doctors doubted Dorothy A writer for The Mighty who has multiple health condition recently praised The Golden Girls for it’s portrayal… Continue reading Shout out to The Golden Girls: Shows and movies that “get” chronic illness
“You get out of life what you make it”: Member Anna shares her experience living with IPF
Meet PatientsLikeMe member Anna, who’s been living with IPF since 2011. Below, see what she shared with us about her diagnosis, how she fills her days with the things she loves, and how she’s learned to tackle daily tasks like shopping and cleaning while living with a chronic condition. She also touched on how PatientsLikeMe helped… Continue reading “You get out of life what you make it”: Member Anna shares her experience living with IPF
PTSD Nightmares: Why they’re happening and what you can do
More than 1,600 members of the PTSD community on have reported experiencing severe nightmares, and there are dozens of forum threads tagged with topic. So, we took a deeper dive into PTSD nightmares and some of the research-backed approaches you can try to help manage them. How common are nightmares after trauma? The quick answer: Very common. According… Continue reading PTSD Nightmares: Why they’re happening and what you can do
Life-changing second opinion stories: “I decided to get a second and third opinion…”
Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle.… Continue reading Life-changing second opinion stories: “I decided to get a second and third opinion…”
“It just makes sense to give back”: How PatientsLikeMe employees volunteered their time this year
Volunteering is a big part of the culture at PatientsLikeMe. Inspired by PatientsLikeMe members, who have made our online community a place to find support and answers about health, we do our best to give something back to our local community, too. This year, many of our staff members pitched in and gave their time… Continue reading “It just makes sense to give back”: How PatientsLikeMe employees volunteered their time this year
The OpenNotes movement: Your right to read your doctors’ notes
Have you ever seen your doctor’s clinical notes about you? (We’re not talking about your brief ‘after-visit summary,’ but the detailed notes the doctor or other healthcare provider writes later on.) PatientsLikeMe member Liz (thelizarmy) recently talked with us about OpenNotes, a movement to give patients easy access to their providers’ notes – like her 4,000+… Continue reading The OpenNotes movement: Your right to read your doctors’ notes
9 mental health podcasts worth listening to
Podcasts are an easy (and usually free) way to stay on top of what’s new across a wide variety of topics — they’re kind of like internet radio on demand, and usually broken up into episodes that you can download on your computer, device or phone. Below, we rounded up 9 podcasts focused on mental… Continue reading 9 mental health podcasts worth listening to
Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences
Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad). If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team… Continue reading Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences
The 2017 healthcare policy roller coaster ride — and what’s around the bend
It’s been a year of wild ups and downs related to the proposed U.S. healthcare policy changes and unknowns around the Affordable Care Act (ACA or “Obamacare”), Medicare and CHIP (an insurance program for kids). See a legislative recap and what could be next. 2017 ACA repeal efforts recap Having trouble keeping track of what… Continue reading The 2017 healthcare policy roller coaster ride — and what’s around the bend