Medical marijuana is a hot topic in the news (and here in the PatientsLikeMe community). So we took a closer look into what it is, how it works, and what members are saying about it. Take a look: Do you use medical marijuana? Head to PatientsLikeMe to join the conversation and share your experience. Share this… Continue reading Weed 101: How and why patients use medical marijuana
Category: ALS
Illustrating member perspectives on life with chronic illness
In medical terms, most health conditions have clear definitions. But only people living with chronic illness know what it really feels like to live with it — and making others understand can be a challenge. When we asked some PatientsLikeMe members to explain what life was like with their condition, their responses painted vivid pictures of what… Continue reading Illustrating member perspectives on life with chronic illness
In the market to live better: ALS members weigh in
Over the years, the PatientsLikeMe ALS community has shared what products help them manage their new normal with ALS. From eye-gaze devices to elevated toilet seats and alternating pressure mattresses, we compiled a list of some of the products that you, the experts, are talking about in the forum. Check it out: When it gets… Continue reading In the market to live better: ALS members weigh in
From tomatoes to turmeric: Can foods fight inflammation?
Inflammation is a hot topic. What’s it all about? And what’s the scoop on certain diets, foods and supplements, such as turmeric, when it comes to fighting inflammation? What is inflammation? Not all inflammation is “bad.” Acute inflammation is part of the body’s natural way of defending itself from foreign substances like viruses, bacteria, cuts and splinters.… Continue reading From tomatoes to turmeric: Can foods fight inflammation?
The ALS battle forces changes: A guest blog by member Jim Burton, the ALS Warrior
A harsh reality of progressive diseases like ALS is that your body is constantly changing. After my ALS diagnosis in January 2013, I noticed that the progression seemed to happen in stages. After losing some degree of capacity, I’d settle on a new plateau, which became my norm for a while. The plateaus have become… Continue reading The ALS battle forces changes: A guest blog by member Jim Burton, the ALS Warrior
Want to know more about Radicava (edaravone)? Here’s a snapshot:
With the recent FDA approval of Radicava (edaravone), we wanted to know more about how it works and what it means for patients living with ALS. We asked Maria Lowe, Pharm.D., BCPS, and our Health Data Integrity team, to give us a snapshot of the drug, how it’s used and what you should know. Maria’s rundown… Continue reading Want to know more about Radicava (edaravone)? Here’s a snapshot:
How does ALS make you feel #InThreeWords?
May is ALS awareness month and this year, we’re joining the ALS Therapy Development Institute to share how ALS makes us feel, #InThreeWords. Sad, determined, frustrating as hell – just a few of the words PatientsLikeMe staff chose. Want to get involved? Check out what PatientsLikeMe staff had to say, including a video from our… Continue reading How does ALS make you feel #InThreeWords?
Worth a thousand words: A day in the life of Larry
As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family… Continue reading Worth a thousand words: A day in the life of Larry
Paul Wicks on the power of sharing data
Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world. Now, we’re sharing a video of his presentation about what… Continue reading Paul Wicks on the power of sharing data
The record on research: Catching up with TOA member Cris
Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials… Continue reading The record on research: Catching up with TOA member Cris