Loneliness is a public health issue. It was before the COVID-19 epidemic forced us into social isolation. Former U.S. Surgeon General Vivek Murthy called loneliness a “growing health epidemic,” and even wrote a book about…
It’s April Fool’s Day so we’re mixing things up with an unhelpful advice rant. One can’t be positive 100% of the time. Now is the opportunity to share about all of the weird things people…
How is the threat of Covid-19 (coronavirus) impacting your life? Beyond fierce hand washing, are you changing how you relate to others? Is social distancing keeping you indoors? Are you second-guessing where you go, what…
Patient Advocates, Patient Leaders
- February 4, 2020
- Tagged as: advocacy, autoimmune condition, caregivers, chronic fatigue syndrome, chronic illness, chronic pain, collagen six intermediate congenital muscular dystrophy, fatigue, fibromyalgia, Limb Girdle, lupus, Lyme disease, muscular dystrophy, neuromuscular disease, patient advocate, patient leader, respiratory, respiratory health, ventilator
What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf…
Registered Nurse and proud septuagenarian, Barbara Blaser, was the guest speaker at my Northern California myotonic dystrophy support group. With her healthcare background and deep knowledge of medicinal herbs, she spoke about the use of…
Two friends from grade school share their stories of a diagnosis of a neurological condition. Marc has Multiple Sclerosis and Steve has Parkinson’s disease. I have a form of muscular dystrophy called myotonic dystrophy. It’s…
If you have a physical or mental health condition that has altered the way you look or behave, it may scare people. Have you had friends or family members change how they interact with you…
One yoga teacher’s health journey. Katrina LaShea was able to ease her back injury and subsequent ankle injury pain through a yoga practice. What once worked as a treatment, later became her passion. Today Katrina…
Is using Social Media important to you? Which platform do you use to find support from others with the same chronic health condition? If you’re a caregiver, do you access an online group to connect…
It’s all about support groups! Listen to several support group facilitators talk about their experiences attending and eventually facilitating a support group. Patient advocacy organizations represented include the Muscular Dystrophy Association, Multiple Sclerosis Foundation, and…