Managing MS fatigue & guilt

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

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

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

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

Living with a mental health condition? See these helpful pointers for your next job interview

Unsure of how to navigate that job interview? You’re not alone. Members have exchanged their experiences and strategies here on PatientsLikeMe — from worrying about how to control nervous twitches to advice about not oversharing. Read on for more info about what you need to disclose to your potential employer, and hear how other members get through… Continue reading Living with a mental health condition? See these helpful pointers for your next job interview

Pre-diagnosis limbo: “I knew something was wrong”

Before you were diagnosed with your condition, how long did you live in “limbo” with your symptoms and what was that like? Living with the unknown is a common part of the patient experience — PatientsLikeMe data shows that people with a wide range of health conditions live with their symptoms for several months or… Continue reading Pre-diagnosis limbo: “I knew something was wrong”

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.”