Epidiolex: First FDA-approved drug made from cannabis component (CBD)

In a historic move, the U.S. Food and Drug Administration (FDA) recently approved Epidiolex — an epilepsy medication made from purified cannabidiol (CBD), found in cannabis. Read all about it and what it could mean for the future of cannabis-based treatments. As background, see these other recent write-ups we’ve done on medical cannabis/marijuana and CBD. What is Epidiolex?… Continue reading Epidiolex: First FDA-approved drug made from cannabis component (CBD)

Zoodles! Let’s dish on lupus/food + swap recipes

zucchini pasta with shrimp and tomato on a plate. horizontal top view

If you’re living with lupus, have you found any particular foods that affect you and your condition — for better or worse? Member Jeanette (JeanetteA6872), a member of the 2018 Team of Advisors who’s living with systemic lupus erythematosus (SLE), shares which ingredients she tries to include or avoid in her diet, plus three of her favorite… Continue reading Zoodles! Let’s dish on lupus/food + swap recipes

It’s Self-Care Day! 7 “pillars” for taking care of you

Selfcare

Today is International Self-Care Day. There’s even a Senate resolution designating July 24 as a day to recognize the importance of self-care in the U.S. (it’s on 7/24 because, ideally, it should be a focus 24/7 for everyone). Has your self-care — from diet and hydration to hygiene and hobbies — been slipping because of competing priorities? Bring… Continue reading It’s Self-Care Day! 7 “pillars” for taking care of you

Staying mobile with assistive walking devices: Member Cathy weighs in

walking devices

Do you have difficulty walking or getting around? Have you considered using a wheelchair, walker or cane? Making the decision to use a walking or mobility aid can be difficult. You’re not alone. Here, PatientsLikeMe member Cathy living with multiple sclerosis shares about how she overcame the fear of losing her independence and how using a cane is… Continue reading Staying mobile with assistive walking devices: Member Cathy weighs in

“Chemo brain”: 3 surprising findings from recent research

Chemo brain

“Chemo brain” — the term for cognitive problems associated with chemotherapy treatment — appears to be very common, but doctors only started paying attention to it in the late 1990s. A 2012 study that finally helped elevate chemo brain as a serious and widespread issue estimated that up to 75% of breast cancer survivors experience “cognitive deficits—problems with… Continue reading “Chemo brain”: 3 surprising findings from recent research

2018 National ALS Advocacy Conference: A recap from Team of Advisors members Rich & Paul

ALS Conference

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… Continue reading 2018 National ALS Advocacy Conference: A recap from Team of Advisors members Rich & Paul

Key takeaways from a recent study on antidepressants

antidepressants

The World Health Organization reports 300 million people live with depression, but less than half receive effective treatment. A recent study in the journal The Lancet has been making headlines for comparing the effectiveness of antidepressant medications — information that is often lacking for patients trying to make informed choices about their treatments. They found that all of the… Continue reading Key takeaways from a recent study on antidepressants

Parkinson’s Disease and Drenching Night Sweats? Solutions!

Drenching Night Sweats - Parkinson's Sweat

PatientsLikeMe members with Parkinson’s disease (PD) have talked a lot about excessive sweating (aka hyperhidrosis) and heat intolerance with Parkinson’s disease. It can be a “stinker,” as one blogger who has PD recently shared in Parkinson’s News Today. Can you relate? Read on for more information and some possible adjustments or life hacks that others have tried.… Continue reading Parkinson’s Disease and Drenching Night Sweats? Solutions!

Dr. Rick Bedlack weighs in on telemedicine

telemedicine

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… Continue reading Dr. Rick Bedlack weighs in on telemedicine

Circulation issues & ALS

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… Continue reading Circulation issues & ALS