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 …
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 …
How to Adapt Your Living Space and Daily Activities for ALS Read More »
Last month, Rich and Paul from this year’s Team of Advisors attended the 2018 National ALS Advocacy Conference in Washington D.C. to learn about the latest ALS research, network, and meet with members of congress on Capitol Hill. Just over 600 people attended the event, including 100+ pALS and 240 first-time participants. The event started on Sunday with opening remarks followed …
2018 National ALS Advocacy Conference: A recap from Team of Advisors members Rich & Paul Read More »
Do you have difficulty getting to your doctor’s appointments? Ever thought about using telemedicine? Connecting online can make it easier to get the care you need. Here, Dr. Rick Bedlack (a tenured associate professor of Medicine/Neurology at Duke University and the director of the Duke ALS Clinic that’s partnering with PatientsLikeMe in the current Lunasin study) explains …
Do you have circulation issues like swelling (also called edema) or a burning (or cold) sensation in your legs and feet? How do you cope? From compression stockings to therapeutic massage and limiting salt intake, pALS are managing their circulation issues in some creative ways. Why do some people with ALS experience poor circulation? For many …
Trending: Cannabidiol (CBD) oil, gummies, tinctures and more. Why are cannabis products gaining popularity as medical treatments and in general? As more states have legalized medical marijuana, more people have shifted their views on cannabis treatments (like former Speaker of the House John Boehner’s recent change of heart). And last month, an advisory panel at the U.S. Food and …
Cannabidiol (CBD) oil and product FAQs: Fad or effective? Legal or not? Read More »
Let’s stay on top of the latest health news — in case you missed it, check out this round up of some of the stories making headlines in May. ALS May is ALS awareness month: Later this month, advocates from across the U.S. will head to Capitol Hill to meet with their legislators. Check out how …
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 …
Remodeling for ALS? Tips from a pALS who’s been there Read More »
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 …
Communicating with ALS: From devices to voice banking Read More »
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. …
Life-changing second opinion stories: “I decided to get a second and third opinion…” Read More »
