Over the years, PatientsLikeMe members living with Parkinson’s disease have discussed a lot of products and ideas for living better with PD. From kitchen knives and eating utensils to shoe horns and shoelaces, we’ve compiled a list of tools you’ve talked about for (almost) every room in the house and many different aspects of life.… Continue reading What products help people live better with Parkinson’s disease? A room-by-room round-up
Category: Patient Experiences
10+ ways to make your wheelchair work better for you
Wheelchairs aren’t always built with the best patient experience in mind. But many PatientsLikeMe members are sharing about the creative hacks and useful accessories they’ve used to make their wheelchairs better suit their needs. Here are some suggestions — how many have you tried? Making it more comfortable: Egg crate cushions, it’s really important to… Continue reading 10+ ways to make your wheelchair work better for you
Behind the scenes at PatientsLikeMe! Take a peek at user research (aka usability testing)
Have you noticed changes on PatientsLikeMe in the past year? (We’re guessing you’ve spotted quite a few.) Did you know that we involve members in testing out various features or updates to the site before rolling them out? We do! Member Barbara’s user research session with Kris Engdahl, principal user researcher (left), and Nicole Barron,… Continue reading Behind the scenes at PatientsLikeMe! Take a peek at user research (aka usability testing)
Light therapy for depression: What is it, and how does it work?
Bright light therapy is a treatment that’s become increasingly common for treating seasonal affective disorder, a condition that impacts many during the winter months. We sat down with our in-house research specialist to discuss light therapy – what it is, how it works and if it can help treat other types of depression in addition to… Continue reading Light therapy for depression: What is it, and how does it work?
Primary care that treats mind and body? It’s happening in Alaska
Integrated care for both mind and body under one roof? It may sound pie in the sky, but it’s really happening at an award-winning healthcare center in Anchorage, recently featured in Politico. How does it work? And can it be replicated? A shining example in Anchorage “It’s a truism that the mind and body are connected,… Continue reading Primary care that treats mind and body? It’s happening in Alaska
Communicating with ALS: From devices to voice banking
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
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…”