Parkinson’s disease can cause your voice to become raspy, quiet or unsteady, and motor symptoms can make writing and typing more difficult. Have you experienced communication issues like these? See what others have tried — from Lee Silverman Voice Treatment and voice-activated “smart” devices to (drumroll please…) singing classes. How PD can impact communication Parkinson’s… Continue reading Let’s talk: Parkinson’s disease, speech changes + communication issues
Category: Patient Experiences
It’s Self-Care Day! 7 “pillars” for taking care of you
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
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” — 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
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
Dr. Rick Bedlack weighs in on 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
Home Safety Month: Pointers for “aging in place”
June is National Home Safety Month and there’s a buzz around “aging in place,” so we’ve gathered tips and products that can help today’s (stylish) older adults avoid falls and live well at home for years to come. A top home-safety goal: Fall prevention Falls are a growing problem when it comes to home safety,… Continue reading Home Safety Month: Pointers for “aging in place”
Health news: What’s making headlines in June
In case you missed it, check out this round up of some of the stories making headlines in June… Parkinson’s disease: Apple Watch will now be able to monitor PD: Tech developers announced this month that the Apple Watch will now be able to track two common PD symptoms — tremors and dyskinesia —… Continue reading Health news: What’s making headlines in June
Marijuana/lung cancer: New reporting on potential risks/benefits of cannabis
Medical marijuana and cannabidiol (CBD) are getting a lot of media coverage — so what’s the latest, as it relates to lung cancer? See two recent high-profile articles that weigh the possible risks and benefits of cannabis for cancer and respiratory disease. And add your perspective. (Psst, checkout past PatientsLikeMe write-ups on medical marijuana and CBD for some background.)… Continue reading Marijuana/lung cancer: New reporting on potential risks/benefits of cannabis