Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score. Now, we’d like to share our interview with lead study author Dr. Thomas Meyer,… Continue reading The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer
Category: ALS
Making the Impossible Possible: ALS Patient Tony “TEMPT ONE” Quan and the EyeWriter Device
For an ALS patient, an eye gaze system – a type of augmentative speech device that translates eye movements into words – can make it possible to communicate with loved ones when speech is impaired or lost. But as animation studio owner Mick Ebeling found out, not every patient with advanced ALS has one. The… Continue reading Making the Impossible Possible: ALS Patient Tony “TEMPT ONE” Quan and the EyeWriter Device
ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital
At PatientsLikeMe we’ve been collecting self-reported data about patients with ALS (PALS) since 2006 – over 5,000 PALS to be exact! ALS is a disease that causes muscle wasting in the arms, legs, head and chest, which leads to problems walking, eating, and even communicating. However, unlike a disease like diabetes where there’s a blood… Continue reading ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital
Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy
You may remember our interview with ALS advocate Debra Quinn from last fall. Today, we’d like to introduce you to another ALS patient activist in our midst: Tom Murphy, a PatientsLikeMe member since January 2011. As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have… Continue reading Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy
A Peek at the February Newsletter for Members
What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our February edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up… Continue reading A Peek at the February Newsletter for Members
E-Patient Dave’s Top Internet Resources
We first introduced you to E-Patient Dave – a well-known blogger, author and keynote speaker in the healthcare space – last summer. Given our similar views on many health matters, we see a lot of E-Patient Dave at the conferences and events we attend. Case in point, our President and Co-Founder Ben Heywood was on… Continue reading E-Patient Dave’s Top Internet Resources
Information Wants to Be Free
(This post has been repurposed from an article written by PatientsLikeMe’s Paul Wicks for the scientific journal Clinical Investigation.) But when it comes to clinical trials, can we afford to let it be? “Information (or data) wants to be free” – so goes the mantra of hackers and data activists. In the past this meant… Continue reading Information Wants to Be Free
NFL Player Steve Gleason’s Inspiring ALS Story
Did you catch the pre-game show before Sunday’s Super Bowl XLVI? If not, you missed a beautiful NBC piece about Steve Gleason, who spent seven seasons as a safety with the New Orleans Saints. Diagnosed with ALS a year ago, Gleason now walks with a cane, and his speech has been impacted. The new father… Continue reading NFL Player Steve Gleason’s Inspiring ALS Story
Thriving Against Expectations: Ben Heywood’s Moving TEDx Cambridge Talk
Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission). The theme for this particular gathering was “Thrive.” How can we as individuals – and communities – not just survive but thrive? One of the speakers to take a crack at that… Continue reading Thriving Against Expectations: Ben Heywood’s Moving TEDx Cambridge Talk
Today’s Photo: Texans in Motion for ALS
Please meet ALS patient alsgirl (front and center in the wheelchair), who led a PatientsLikeMeInMotion-sponsored team at the 2011 Walk to Defeat ALS in Dallas, Texas. A longtime PatientsLikeMe member who is part of the ALS Public Registry, alsgirl has been living with this degenerative disorder – also known as Lou Gehrig’s disease – for… Continue reading Today’s Photo: Texans in Motion for ALS