Considering the title of this column, From Where I Sit, I’m surprised more people have not written about butts. After all, for those of us wheeling around at a seated height — I live with type 2 spinal muscular atrophy (SMA) — other people’s butts are often what we see from where we sit.
Even a quick search online will turn up all manner of white papers, analyses and studies that identify a higher risk of anxiety and depression among individuals living with chronic disease and physical disabilities — such as those associated with many types of neuromuscular disease.
It is not breaking news to people with neuromuscular disease that combating pain can be a substantial part of daily life. Unfortunately, chronic pain is a complex symptom to manage, and it may be far more pervasive in neuromuscular diseases than originally thought.
“When I started out, about 25 years ago now, there was nothing,” says Gregory Carter, a doctor who specializes in physical...
I measure and compare myself to other “normal” mothers out there — those who are able-bodied. It’s hard not to, especially when it comes to doing everyday things with my son.
Grace Pavlath, an accomplished muscle disease researcher and a professor in the Department of Pharmacology at Emory University School of Medicine in Atlanta, recently joined MDA as senior vice president and scientific program director. She will be based in Atlanta initially and will eventually relocate to Washington, D.C.
What About My Disease?
Readers sometimes wonder what’s happening with research for their diseases when they don’t see news about them for a while in the pages of Quest. But keep in mind: Research that seems to be for one disorder often has spillover implications for others.
Letters to the Editor:
Katrina Gossett knows the importance of gynecologic (pelvic) exams, but she is not eager to repeat her last exam experience.
Katrina Gossett, 29, has only had one gynecologic (pelvic) exam in her life, and it’s not an experience she’s eager to repeat.
For people fighting neuromuscular disease,“progress” is a word that describes encouraging advances in the search for treatments and cures. But it’s also a word that evokes the forward-looking perspectives and remarkable life journeys of those living with these diseases who meet extraordinary challenges.
Upon hearing my diagnosis — type 1 myotonic muscular dystrophy (MMD, or DM) — at the age of 20, I must admit, my world crumbled for a moment. I’ll never forget how the room seemed to shrink and spin, how the doctor’s voice morphed into white noise, and how visions of immobility caught my breath.