When you share your health data, we all learn During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members have selflessly shared, and all the good data donation is doing. One example is the Fitbit study we partnered with Biogen on earlier this year. Nearly 250 members… Continue reading Your data doing good: The Fitbit study
Tag: multiple sclerosis
PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships
Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015–2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing… Continue reading PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships
Talking Brain Donation with Dr. Deborah Mash
Dr. Deborah Mash is a professor of neurology and molecular/cellular pharmacology at the University of Miami School of Medicine. She’s also the director of the university’s Brain Endowment Bank, and she recently spoke with PatientsLikeMe about her research and exactly what goes into donating your brain to science. As she says, “we still know very… Continue reading Talking Brain Donation with Dr. Deborah Mash
Spoons and forks – not just for summer picnics
There are a ton of activities to do during the “lazy, hazy, crazy days of summer.” And whether you’re living with a chronic condition or not, it’s good to learn how to manage your energy. Christine Miserandino, who lives with lupus, created her “Spoon Theory” as a way to think about how much energy we… Continue reading Spoons and forks – not just for summer picnics
Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS
Ashleigh (Georgiapeach85) is a little bit different than your typical PatientsLikeMe member – not only is she living with multiple sclerosis, she also a caregiver for her husband Phil, who has been diagnosed with PTS. In her interview, Ashleigh shares her unique perspective gained from her role as a patient and caregiver, and how PatientsLikeMe… Continue reading Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS
Getting to know our Team of Advisors – Charles
We’ll be featuring three Team of Advisors introductions on the blog this month, and first up is Charles, a veteran Army Ranger who is also living with MS. Below, Charles shared about his military background, his thoughts on patient centeredness and how he’s found his second family in the Team of Advisors. About Charles (aka… Continue reading Getting to know our Team of Advisors – Charles
Wrapping up Seeing [MS]: The invisible symptoms
Here’s a question we asked last year – how do you explain multiple sclerosis to those who don’t understand? And here are a few answers: “I’m burnt alive every day.” “A single bead of sweat can bring me to my knees.” “I can be struck down in just seconds.” Over the past year, we’ve been… Continue reading Wrapping up Seeing [MS]: The invisible symptoms
Seeing [MS]: The invisible symptoms – numbness
“When I woke up, my hands were gone.” That’s how Adriana Grasso described the numbness she experiences as part of her MS. It’s so severe that she doesn’t even know what it feels like to hold someone’s hand. As she says, “A simple thing that we take for granted – touch – it’s gone, and… Continue reading Seeing [MS]: The invisible symptoms – numbness
PatientsLikeMe study monitors walking activity in people with MS
Cambridge, MA, April 15, 2015—PatientsLikeMe today announced results of a novel study conducted with Biogen that showed how people living with multiple sclerosis (MS) can use wearable activity tracking devices to collect and share their mobility data, which could potentially provide relevant information to their clinicians and to other MS… Continue reading PatientsLikeMe study monitors walking activity in people with MS
Seeing [MS]: The invisible symptoms – balance
Describing her loss of stability and balance is difficult for Carol Cooke. One moment, she might be walking, and the next, she’ll fall to the ground. As she says, “I just want to get up and keep going,” but that’s not possible due to the symptoms of her multiple sclerosis (MS). Listen to Carol speak… Continue reading Seeing [MS]: The invisible symptoms – balance