At PatientsLikeMe, we believe that the patient voice is what can change healthcare for good, so we’re always excited when our members take the time to talk about their personal stories with the community. This week, Geof, a PatientsLikeMe multiple sclerosis (MS) community member with a big heart and an even bigger family, shared his… Continue reading A life well lived: Giving and sharing with PatientsLikeMe member Geof
Category: Multiple Sclerosis
Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia
As part of our “Are You Sleeping?” initiative, we’re talking with different patients to learn what it’s like to live with a lack of sleep and how that impacts their health. Recently, we caught up with Marcia, a PatientsLikeMe MS community member (some of you might know her as gamma) and happy grandmother of 3… Continue reading Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia
“Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.
For our latest patient spotlight interview, we’re talking with Ted. Some of you may know him on PatientsLikeMe as sirsmedley’s and he’s been sharing his journey with the community since 2010. Ted was diagnosed with multiple sclerosis (MS) back in 2009 and he recently took some time to talk with us about a bunch of… Continue reading “Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.
“I choose hope.” Interview with Multiple Sclerosis Blogger Tricia
In our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Tricia who’s writing about her journey with multiple sclerosis (MS) on her blog Love My MS Life. Some of you may… Continue reading “I choose hope.” Interview with Multiple Sclerosis Blogger Tricia
Partnering with Patients to Improve Healthcare
Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into… Continue reading Partnering with Patients to Improve Healthcare
Coping with Changes in Physical Appearance
When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions. But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience. For example, how do you deal with hair loss, facial swelling, weight… Continue reading Coping with Changes in Physical Appearance
A Patient Poem for the Modern Age
Can you be friends with someone you’ve never met in person? The members of our online health community – now 300, 000+ patients strong – think so. In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone. As evidence, here… Continue reading A Patient Poem for the Modern Age
Use It or Lose It?
You’ve all heard the phrase “use it or lose it” before. But should it be applied to patients with chronic, debilitating illnesses? That’s an ongoing debate in the PatientsLikeMe forums. Take for example this discussion of cognitive difficulties in our Multiple Sclerosis Forum. On the one hand, there’s the argument that brain exercises such as… Continue reading Use It or Lose It?
Not Recognizing the “New Me”
For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself. According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help. Have you found yourself feeling resentful when family,… Continue reading Not Recognizing the “New Me”
How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years. A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me: My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.” Her patient… Continue reading How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell