A physician with mitochondrial myopathy describes undergoing and taking care of her tracheostomy
I am writing this article about getting a tracheostomy for others with muscular dystrophies. Many patients are reluctant to have the procedure done because they fear they will lose the ability to talk or to swallow. Neither is true. And, the new trach tubes make it possible to easily take care of a tracheostomy and the tubes.
From an evacuation to a power outage to a simple family emergency — do you have a plan that accommodates your special needs?
As storm season whips up, it’s wise to take stock of your emergency plan, especially if your mobility is limited.
Two veterans of weather emergencies — Barbara Twardowski of Mandeville, La. (who has Charcot-Marie-Tooth disease and uses a power chair) and Shelley Obrand of Davie, Fla. (who has a nonspecific form of muscular dystrophy and uses a power chair and respiratory assistance device) —...
Air travelers “hostile” as new required labels for respiratory equipment fail to materialize
Vent, CPAP and BiPAP users can expect to encounter ongoing obstacles if they plan to fly on commercial airlines in the near future.
Interviews with government and industry representatives show that the special labeling required for such equipment still has not been created, and no one – except the frustrated and angry travelers affected by the ruling – seems to consider it an urgent matter.
Short, free guide answers questions about the ADA and other disability rights laws
“Individuals with disabilities are a protected class under civil rights laws, and it is the one protected class that anyone can join, usually involuntarily, at any point in their lives.”
So says attorney Jacquie Brennan, the author of a new guide to disability rights laws, The Disability Law Handbook, that recently was released by the Southwest Disability and Business Technical Assistance Center...
Traveling by air can be a nightmare when a traveler’s special needs run up against an inflexible, unsympathetic bureaucracy — as Julianna Dombrowski of Greenacres, Fla., found out the hard way.
In July last year, Dombrowski, 54, booked a Delta Airlines trip from West Palm Beach to visit family in Harrisburg, Pa., with a connecting flight in Atlanta.
Once upon a time, there was a young woman named Goldilocks. She went to visit her MDA clinic for an appointment with a respiratory therapist (RT) because her doctor said she needed help to breathe better.
Goldilocks was going to try on a variety of noninvasive ventilation (NIV) interfaces and find the one that was just right.
In people with muscle diseases, testing for sleep-breathing problems is tricky, but worth it
Do you suffer from sleep disturbances — snoring, choking or gasping, or restless tossing and turning?
Do you wake up in a sweat in the middle of the night, or arise in the morning feeling fatigued, or with headaches, sore throat or dry mouth?
Do you experience memory and concentration problems, or find you’re excessively sleepy during the day, falling asleep when you normally shouldn’t, such as...