Living with a tracheostomy: Scott Parlee is 42 years old and lives in Fredericton, New Brunswick, with his mother and father. Scott, who has Duchenne muscular dystrophy, has had a tracheostomy and been using a ventilator for seven years. He has relied on mechanical ventilation ever since a severe respiratory infection landed him in the ICU for two months. Luckily, his family has been a strong advocate for Scott and his care. When there were questions about whether or not Scott would be able to move out of the ICU and live at home, Scott’s father, Allen, made a strong case that the costs of home ventilation should be covered by the provincial government. Not only would home be a happier environment for Scott, but it would actually cost the health-care system less than if Scott had to remain in the hospital.
In addition to the ventilator, Scott now uses a CoughAssist™ mechanical insufflator-exsufflator to help with his breathing and secretion release. His parents have noticed a tremendous difference in Scott’s respiratory health since he began this therapy, and they encourage others with respiratory muscle weakness to learn more about it. They believe that there is not enough awareness about the benefits of the CoughAssist™ device. In fact, Scott and his family have encountered many situations where health-care professionals did not know how to use the CoughAssist™ machine and had to be taught by Scott’s father. Scott and his parents advise others not to be fearful of getting a tracheostomy. They acknowledge that it has taken getting used to and that there is an adjustment period following the surgery and initiation of invasive ventilation.
For Scott, however, getting a tracheostomy was life saving, and it has not prevented him from leading a fulfilling and productive life. He travels extensively, and over the past few years, he has attended AC/DC, U2 and KISS concerts.
Read more in the Guide to Respiratory Care for Neuromuscular Disorders.