Thinking about remodeling your home but don’t know where to begin? You’re not alone. Many people living with ALS consider a remodel to accommodate their needs as their condition progresses but don’t know where to start. To get some real-world advice, we talked to Jonathan Woodman, a pALS who recently renovated his garage into what… Continue reading Remodeling for ALS? Tips from a pALS who’s been there
Category: ALS
Communicating with ALS: From devices to voice banking
Difficulty with speech and communication is a frustrating reality for many living with ALS. From apps to devices and voice banking, communication is a popular topic (as in over 35k conversations) on PatientsLikeMe, so we took a closer look into some of the options out there for pALS. Tablets: Windows vs. iPad vs. Android Trouble with typing… Continue reading Communicating with ALS: From devices to voice banking
Life-changing second opinion stories: “I decided to get a second and third opinion…”
Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle.… Continue reading Life-changing second opinion stories: “I decided to get a second and third opinion…”
Weed 101: How and why patients use medical marijuana
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
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:
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
ALS Reversal: A chat with Duke’s Dr. Rick Bedlack
“This is the fastest enrolling trial in ALS history.” A brightly-colored blazer and the determination to make a difference for ALS patients are two of Dr. Rick Bedlack’s defining characteristics. Dr. Bedlack is a tenured associate professor of Medicine/Neurology at Duke University. He’s also the director of the Duke ALS Clinic that’s partnering with… Continue reading ALS Reversal: A chat with Duke’s Dr. Rick Bedlack
“I feel it needs to be told”: Member Cathy shares a memory
Last year, we spoke with Cathy (Catrin) about her experience transitioning into a caregiver role for her husband, Fred, who was living with bulbar onset ALS. Shortly after that, Fred passed away, and to mark the year of his passing, Cathy recently shared the following memory. Here’s what she had to say… “I have been… Continue reading “I feel it needs to be told”: Member Cathy shares a memory