Tag: ALS

Food for thought: June edition

For the past couple months, we’ve been sharing about different members’ favorite foods and recipes, and we’re keeping it going with multiple sclerosis members discussing the pros and cons of smoothies, ALS patients talking about getting sleepy after steak, and the fibromyalgia community sharing about cutting foods out of their diets. MS forum thread: Nutrition… Continue reading Food for thought: June edition

If you could share one thing… -Steven’s inspiring answer

PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness.… Continue reading If you could share one thing… -Steven’s inspiring answer

Food for thought: May edition

Just last month, we shared about some of our community members’ favorite foods, and about how what they choose to eat can impact the conditions they live with every day. We heard from the fibromyalgia, type 2 diabetes and multiple sclerosis communities – and to keep the series going, we’ve got three new hot, or… Continue reading Food for thought: May edition

What lies ahead – PatientsLikeMe member John shares his journey with ALS

It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and… Continue reading What lies ahead – PatientsLikeMe member John shares his journey with ALS

Speaking up for hope during ALS Awareness Month

May is just a few days away, and we wanted to get a jump-start on spreading the word for Amyotrophic Lateral Sclerosis (ALS) Awareness Month. As many out there might know, PatientsLikeMe was founded on the life experiences of brothers Stephen, Ben and Jamie Heywood. In 1998, Stephen was diagnosed with ALS and his brothers… Continue reading Speaking up for hope during ALS Awareness Month

Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at… Continue reading Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Subjects no more: what happens when trial participants realize they hold the power in clinical trials?

When I first became involved with online communities back in 2002, I moderated a small forum for patients with ALS/MND in the UK at King’s College Hospital to connect with one another, share tips and support, and to help our care center to serve them better. One area that remains controversial even to this day… Continue reading Subjects no more: what happens when trial participants realize they hold the power in clinical trials?

Spotlighted Blogger: ALS Patient Rachael of “Notes to Self”

Welcome to the third installment of our new blog series featuring patient bloggers. Last week, we introduced you to Parkinson’s blogger Steve, and today, we’d like you to meet Rachael, a three-star member who has been a part of PatientsLikeMe’s flagship ALS community since the very beginning. In fact, she joined PatientsLikeMe in May 2006,… Continue reading Spotlighted Blogger: ALS Patient Rachael of “Notes to Self”

What Does it Mean When You Have Cold Legs?

If you’ve experienced cold legs yourself, we encourage you to share your experiences to help other patients. PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions, and lifestyle modifications that have helped you or simply had no effectHave you suddenly realized that your legs are cold? You’re sitting… Continue reading What Does it Mean When You Have Cold Legs?