Glenn Ribotsky, a Board member with the Western Neuropathy Association, shares his dramatic initiation as a patient into the world of peripheral neuropathy. Now, 18 years later he advocates and offers support to others experiencing…
Dr. William Lowery, a practicing pulmonologist at Alameda Hospital in Northern California, was diagnosed with Limb-Girdle muscular dystrophy some 20 years ago. He’s now founded a non-profit organization to help others shorten their diagnostic odyssey…
Movement is Medicine: Get Your Daily Dose
- April 25, 2021
- Tagged as: dance, movement, neuromuscular disease, respiratory health, stroke recovery, yoga
It’s the May Movement Challenge! This podcast episode explains all you need to know about the #MayMovementChallenge2021 featuring Stanford University’s Research Physical Therapist, Tina Duong. Tina’s worked with both children and adults with spinal cord…
A contemplative practice includes meditation, prayer, mindfulness, yoga, tai chi or qigong, journaling or anything that helps ground you. Some people use affirmations while others use music to help them ease into a more tranquil…
What do you do as a patient with a progressive health condition that renders you unable to do certain tasks? Do you ask for assistance or find a work-around to accommodate for that situation? Once…
Featured are four people — with their own unique health conditions — that are coping and making the best of the quarantine and pandemic. Luda Gogolushko, who has SMA Type 3 and lives in Southern…
If you, or someone you know, has a muscle or nerve condition such as Multiple Sclerosis, Spinal Cord Injury, Amputation, Osteoarthritis, Parkinson’s Disease, or a neuromuscular disease (i.e. myotonic dystrophy, SMA, Charcot Marie Tooth, Becker’s,…
- Autoimmune Disorders
- Coping
- Laughter
- Mental Health
- Neurological Conditions
- Podcast Episodes
- Social Support
Let’s Rant: Unhelpful Advice
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…
Being diagnosed with a chronic, debilitating disease can certainly bring stress to one’s life. In fact, that stress can be significant enough to be called trauma. How one handles this stress varies. Some people have…
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…
