Ever have a sudden loss of balance or feel like the room is spinning? You’re not alone —it’s a popular topic in the forum, and vertigo might be to blame. See what other members have shared about their experience with this symptom and how they cope. What’s vertigo? Vertigo is the feeling that you, or the… Continue reading MS & Vertigo: How do you cope?
Category: Patient Experiences
“Not tonight”: How health conditions can affect your sex life + relationships
Personal (but important) question: How’s your sex life? Explore how your diagnosis (and symptoms and treatments) can impact your romantic relationships, see what members are saying about the topic on PatientsLikeMe — and learn what you can possibly do about love-life struggles. Intimacy, interrupted According to sexologists, people with a variety of health conditions can… Continue reading “Not tonight”: How health conditions can affect your sex life + relationships
MS constipation blues? See 12+ treatment options
Feeling “irregular” on the regular? Constipation is a common issue for people living with multiple sclerosis (MS), affecting as many as 40% of patients. Over 15,000 MS members on PatientsLikeMe report experiencing bowel problems and of those, about 47% have reported it as “moderate” or “severe” – take a look here. With help from our team of… Continue reading MS constipation blues? See 12+ treatment options
Let’s talk: Parkinson’s disease, speech changes + communication issues
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
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