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 making the best of the quarantine and pandemic. Luda Gogolushko, who has SMA Type 3 and lives in Southern California, continues…
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,…
It’s April Fool’s Day so we’re mixing things up. One can’t be positive 100% of the time. Now is the opportunity to share about all of the weird things people have said about our health…
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…
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…
Pilates: Core Strength, Alignment, Pain Relief, and Neural Reconnection
- October 6, 2019
- Tagged as: breath awareness, core muscles, exercise, Feldenkreis, foot drop, Franklin Method, hip, independence, mindfulness, movement therapy, myotonic dystrophy, neural connectivity, pain, Parkinson's disease, physical therapy, Pilates, proprioception, PTSD, scoliosis, trauma, yoga
Practicing Pilates can be done on a mat or with any number of devices such as the Reformer. Shannon Knorr, a yoga and Pilates instructor, talks about therapeutic Pilates to help with body alignment, pain…
Four women with different physical abilities talk about what fashion means to them and how they deal with fashion challenges. Cheryl and Lainie both have Charcot Marie Tooth (CMT) and wear AFO leg braces. Lainie…
