There’s a greater sense of awareness around ALS lately. The IceBucketChallenge really shined a spotlight on a condition that many have heard of, but maybe not that many really understand. (If you missed it, see everyone here at PatientsLikeMe taking on the challenge, and what Steve, an ALS community member, thinks about it. So it… Continue reading You’re Not You
Category: ALS
“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge
Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009)… Continue reading “Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge
“Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS
There’s been a lot of awareness going on for ALS with the IceBucketChallenge, and to help keep the momentum going, PatientsLikeMe member Dee (redrockmama) shared her personal experiences with the neurological condition. She made the decision to install a feeding tube early in her journey, and now she is managing her weight through overnight… Continue reading “Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS
Putting the spotlight on ALS
If you follow PatientsLikeMe on Twitter or Facebook, you might be wondering why our staff decided to dump ice water all over their heads this past week. Well, here’s what’s up: it all about raising awareness for ALS. It began in 2012, when local Boston College alumnus Pete Frates was diagnosed with amyotrophic lateral sclerosis… Continue reading Putting the spotlight on ALS
“In my own words” – PatientsLikeMe member Steve writes about his journey with ALS
For those of you who don’t know Steve, you should! For years he worked as a successful landscape architect designing urban public spaces. In 2006, he was overlooking the design of the historic Boston Common when he was diagnosed with ALS. Steve retired from that career path and quickly started another – creating the Steve… Continue reading “In my own words” – PatientsLikeMe member Steve writes about his journey with ALS
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
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
Raising awareness for amyotrophic lateral sclerosis
May is amyotrophic lateral sclerosis (ALS) Awareness Month. As many out there know, PatientsLikeMe was inspired by the life experiences of Stephen Heywood, who was diagnosed with this serious neurological disease back in 1998. Stephen’s brothers (Ben and Jamie) made many attempts to slow the progression of his condition, but their trial-and-error approach just wasn’t… Continue reading Raising awareness for amyotrophic lateral sclerosis