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
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
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
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.”
Getting out of bed: The “One hour rule” and other tips
Does getting out of bed in the morning ever seem like an overwhelming task? You’re not alone. PatientsLikeMe members are talking about it a lot in the mental health forum. Read on to learn what’s worked for others on difficult mornings. Give yourself no more than an hour Elyse Raffery, contributor to The Mighty, shared… Continue reading Getting out of bed: The “One hour rule” and other tips
Is seasonal affective disorder real? Some call it “folk psychology”— others say it’s legit
Mental health experts first recognized seasonal affective disorder (SAD) — or depression that follows a seasonal pattern — in 1987. Some recent research has called SAD into question. What’s with the clashing theories? What do U.S. healthcare experts say, as of today? And how do people treat SAD? Read on. Questioning SAD Both culturally and… Continue reading Is seasonal affective disorder real? Some call it “folk psychology”— others say it’s legit