Written by Leigh Ann Nielson, PLM Member My name is Leigh Ann Nielson and I was diagnosed with ALS/Lou Gehrig’s Disease on November 27, 2019. It has been quite a journey. I am not a doctor, nor do I advocate for not following your doctor’s advice. That said, you have choices. Be sure your medical… Continue reading Hints and Ideas for Those with ALS or Mobility Issues and Their Caregivers
Tag: ALS
Risk Factors for ALS
Once considered a rare disease, amyotrophic lateral sclerosis (ALS) has become a common condition. About 6,000 new cases of ALS are diagnosed each year, and approximately four to six people per every 100,000 are living with the disease. Also called Lou Gehrig’s disease, it’s a progressive illness that affects nerve cells in the brain and… Continue reading Risk Factors for ALS
How to Adapt Your Living Space and Daily Activities for ALS
Your home is your sanctuary, but if you’ve recently been diagnosed with amyotrophic lateral sclerosis (ALS), it may feel like that sanctuary isn’t as safe as it used to be. As the illness progresses, it can become harder to move around your home and do the daily tasks you used to do. Because ALS is a… Continue reading How to Adapt Your Living Space and Daily Activities for 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
Shout out to The Golden Girls: Shows and movies that “get” chronic illness
‘Tis the season for binge-watching — but the media often flops in its portrayal of people with health conditions. So we’ve gathered patient perspectives on Hollywood depictions of illness and who’s gotten it right (thanks, Bea Arthur). When doctors doubted Dorothy A writer for The Mighty who has multiple health condition recently praised The Golden Girls for it’s portrayal… Continue reading Shout out to The Golden Girls: Shows and movies that “get” chronic illness
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