The first symptoms of my neuromuscular disease appeared when I was 6 years old. I was well into adulthood when an MDA clinic physician diagnosed my condition as limb-girdle muscular dystrophy.

Tedde Scharf uses a mouthpiece with her ventilator during the day.

Knowing that I’d probably live into my 60s or longer, I pursued my education and my life, using a wheelchair to get around. My career brought me to Arizona State University in Tempe, where I directed the Disability Resource Center for students with disabilities for several years. I worked 50 to 60 hours a week, providing services for 1,800 students a year. My life was filled with challenges and rewards, and I loved it.

Then, in 1985, I came down with pneumonia. I recovered fairly quickly, but soon I began having memory problems and falling asleep in staff meetings. I was bone tired all the time. I was in my 40s, and I just thought I was getting old.

Then one morning in 1988, when I had a bad cold, I had a hard time breathing, and I noticed that my lips and fingertips were blue. In the emergency room, a tube was put down my throat, and I was sent to the intensive care unit. The diagnosis was pneumonia, complicated by severe respiratory insufficiency from weakened diaphragm muscles.

Up to that point, I’d been very healthy (I thought) and hadn’t taken time from my busy schedule to go to the MDA clinic for regular checkups. I didn’t know that I was experiencing the symptoms of respiratory insufficiency.

After nearly two months in the hospital, I was released with a tracheostomy (breathing tube in the trachea) and a portable ventilator. Later, I got a speaking valve, but at first I was unable to speak and communicated with pad and pencil. Despite medical predictions, I was back at work within four months, after learning everything I could about ventilation and the equipment for it.

In 1995, after extensive research and evaluation, I was able to switch from my trach to a noninvasive method of assisted ventilation. I use an inflatable belt to help me breathe most of the time, and I use several oral interfaces with a ventilator during the day and a custom nosepiece for nighttime ventilation.

I’ve successfully used invasive and noninvasive ventilation methods for 18 years. For those of us with neuromuscular diseases, both approaches to breathing support will help restore energy, improve our quality of life and — most important — give us more years to enjoy living.
No matter how you and your doctor decide to handle your respiratory needs, knowledge will help overcome fear. This booklet tells how, with your MDA clinic staff, you can monitor your respiratory health, and it presents the symptoms of respiratory distress. With this knowledge, you can avoid an unexpected crisis.

If you ever feel lost or afraid, have questions about ventilatory support or just want to share experiences, please contact me at tedde@asu.edu.

Tedde Scharf
Tempe, Arizona