In honor of Lupus Awareness Month, meet PatientsLikeMe member Jeanette, who recently traveled to the U.S. Capitol to advocate for lupus research funding. (Psst — here are some ideas on how to “Go Purple” this May and raise awareness of lupus!) “I try to help the world,” says Jeanette Alston-Watkins (JeanetteA6872). The full-time working mom of two… Continue reading Lupus Awareness Month: Lupus Warrior Jeanette recaps her D.C. advocacy trip
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.
5 Earth-friendly ideas for patients
As Earth Month winds down, explore some environmental pointers, including how to donate (gently used) wheelchairs, what to do with empty pill bottles (earbud/jewelry case, anyone?) and where to dispose of unused meds (April 28, 2018, happens to be National Prescription Drug Takeback Day at 5,000+ sites across the U.S… read on!). 1. Donate unused… Continue reading 5 Earth-friendly ideas for patients
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