Ever feel guilty about how your MS symptoms impact your life or the people around you? Like you can’t “pull your weight” or that people don’t understand that needing to rest is a real symptom and not laziness? The PatientsLikeMe community can relate — there are nearly 26,000 members with MS reporting fatigue as a symptom, and… Continue reading Managing MS fatigue & guilt
Category: Patient Experiences
Deep brain stimulation (DBS) by the numbers, 30 years in
Now that deep-brain stimulation (DBS) — a groundbreaking treatment for Parkinson’s disease — has been around for just over 30 years in the U.S., check out some stats and data about it. Plus, see how many members of the PatientsLikeMe community have had DBS and what they’ve said about it. What is DBS and how… Continue reading Deep brain stimulation (DBS) by the numbers, 30 years in
Remodeling for ALS? Tips from a pALS who’s been there
Thinking about remodeling your home but don’t know where to begin? You’re not alone. Many people living with ALS consider a remodel to accommodate their needs as their condition progresses but don’t know where to start. To get some real-world advice, we talked to Jonathan Woodman, a pALS who recently renovated his garage into what… Continue reading Remodeling for ALS? Tips from a pALS who’s been there
13 Spring Clean Laundry Hacks when you have a Health Condition
Pain, fatigue and other symptoms can make spring cleaning and household chores… stink! We’ve rounded up some tips, tricks and life hacks for cleaning and doing laundry when you have a health condition. 1. Make a plan. Write out your cleaning to-do list (or find a free printable one online) and tackle your top priorities first.… Continue reading 13 Spring Clean Laundry Hacks when you have a Health Condition
Are we really more likely to cry when watching movies on planes? New study de-mystifies the urban legend
The Oscars have been awarded and spring travel is in full swing, which got us thinking about the urban legend that you’re more likely to cry watching a movie on a plane than on the ground. Is it just a myth or is there more to it? While celebrities, polls and pop culture have covered the phenomenon… Continue reading Are we really more likely to cry when watching movies on planes? New study de-mystifies the urban legend
What’s the right-to-try bill + possible pros and cons?
The U.S. House of Representatives recently passed legislation that could give terminally ill patients the “right to try” experimental treatments — so what’s the controversy? Catch up on the topic and share your thoughts below. “Right-to-try,” in a nutshell The “right-to-try” bill aims to give terminally ill patients who’ve exhausted all other treatment options quicker… Continue reading What’s the right-to-try bill + possible pros and cons?
Defining “good” health care: 2 new studies reveal patient perspectives
Do you feel you’re getting the best possible care from your doctor? In two recent studies, PatientsLikeMe members answered this question and shared their perspectives on the health care they’re receiving. The results show that while patient opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that define… Continue reading Defining “good” health care: 2 new studies reveal patient perspectives
Is there a medical gender gap? The not-so-brief history of sexism in medicine
As Women’s History Month comes to a close, take a look at the gender gap in health care and how the centuries-old notion of “hysteria” may still taint women’s experiences today. History of “hysteria” Turns out, there’s nearly 4,000 years worth of evidence that people believed women’s illnesses stemmed from the uterus or sexual issues. An Egyptian… Continue reading Is there a medical gender gap? The not-so-brief history of sexism in medicine
Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship
What’s it like dating and starting a relationship when one of you has a chronic condition? Just ask our blog partners Karl and Angela Robb, who’ve been together for 22 years and married for 21 years. Karl has been living with young-onset Parkinson’s disease (PD) for more than 30 years. He and Angela are the couple behind… Continue reading Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship
PatientsLikeMe at the White House: A new initiative to give patients more control of their health data
Last month, PatientsLikeMe’s Sally Okun, VP of Policy & Ethics, was invited to the White House to attend a small executive discussion. The topic? Making the electronic health record (EHRs) experience more patient-centric and accessible, and the importance of “healthcare data interoperability” — the idea that different electronic health record systems should work together in… Continue reading PatientsLikeMe at the White House: A new initiative to give patients more control of their health data