How will respiratory problems affect my quality of life? People with neuromuscular diseases who are using either invasive or noninvasive ventilation go to school and work; they go out with friends and travel. In almost all cases, speaking valves (Passy-Muir valves are one brand) now in use with trachs can redirect air flow while you’re talking and allow your voice to be heard.

Trachs can be covered with stylish scarves.

Like most electronic equipment, vents have become smaller with time, and they can easily attach to a power wheelchair and accompany you almost anywhere. While you need to have access to care if your ventilator malfunctions, you’re by no means confined to home.

The relief that vent users experience when they’re no longer fighting for breath generally seems a fair trade for any self-consciousness about their appearance. Many women with trachs have incorporated stylish scarves into their fashion decisions.

Assisted ventilation can help people forget the effort to breathe and concentrate on enjoying their families and activities.

Early in the course of a neuromuscular disease, some people feel sure they’d never want to be on a breathing machine. But by the time you or your child needs ventilatory assistance, your feelings about what’s necessary for a worthwhile life may have changed. You may find that being able to write poetry, paint pictures, manage your business or watch your children grow are well worth putting up with the inconvenience of a ventilator.

In addition, future changes in technology are likely to produce ventilation equipment that’s even smaller, lighter and more effective than today’s devices.

In 2002, a study of 26 ventilator users in Canada found that participants reported they had a good quality of life. Health professionals and the general public generally saw ventilation as an intrusive burden, while ventilator users saw it as assistive technology.

The decision to use ventilation and what kind to use depends on many factors, and medical issues aren’t the only ones to be considered. When making the choice, it’s worth keeping in mind that people (even professionals) who haven’t themselves used ventilatory assistance probably don’t know how you or your child will experience it.