Ever wondered how someone with a neuromuscular disorder in his or her family might contribute to research efforts in this field?
When Lizzie Chamberlain of Jacksonville, Ill., was 2 years old, her physical development relative to other children began to plateau — and then decline. Lizzie received a diagnosis of type 3 spinal muscular atrophy (SMA).
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...
Through MDA’s Team Momentum program, participants in endurance races (marathons and half marathons) around the county help raise money to fight muscle disease. These participants receive world-class training, team camaraderie and support for their races, as well as tips and resources for fundraising.
In its inaugural year, 2014, Team Momentum and its dedicated participants enjoyed great...
Any health professional will tell you that good nutrition is a key to living well with and managing a neuromuscular disease. But what if the disease itself makes that goal hard to reach? That’s the all-too-common challenge many people with neuromuscular disorders face.