Living with a tracheostomy: Scott Parlee

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Scott_ParleeLiving 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.

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5 Responses

  1. Bev Stretch says:

    Reading your story was the best news this morn my 8 year old grandson has the same and to c your age has given me a hole new look on this Ty so much for sharing your story with the world we where told Cody would not make it to his 21st bday

    • J.P.Beland says:

      Bev Stretch, we have to hope and be positive for the future. In Ottawa we have several men over 21 with Duchenne. One in his thirties, is active busking. Others are playing powerwheelchair hockey. A volunteer in Ottawa

  2. Viral Raythatha says:

    Hello!

    I am Viral, from India. 25 years DMD. We have just carried out tracheostomy 2 months back.

    The article is indeed quite inspiring. In particular, am quite interested in the CoughAssist gadget described. We are currently using a closed suction system by Kimberly Clark for suctioning out secretions.

    Hence, how would a machine like CoughAssist compare with such a closed suction system?

    A reply would be greatly appreciated!

    Thanks and Regards,

    Viral

  3. musclecanada says:

    Hi Viral,

    Please note that we are not medical professionals and it is best that you use this information when speaking with your health care professional to determine the best option for you.

    A cough assist is an alternative to a suction device and is preventative in its use when a person’s cough has become ineffective due to a lack of muscle strength and as such they are unable to clear secretions by coughing, where as a suction machine is reactive and used only when a person has secretions in their airway which is affecting breathing.

    A suction machine such as the one you indicate using, is to remove secretions from a patients lungs. It is designed to prevent pulmonary aspirations, which lead to lung infections. Basically a tube placed into the throat that suctions fluid from the lungs which in turn facilitates the person to breathe. These could include blood, saliva, vomit or any other secretion.

    Suction machines can he mechanical hand pumps, or battery or electrically operated devices. Typically in closed suction systems one is referring to a tube placed in the mouth and down the throat as far as tolerated to suction fluids or mucus from the airway, when someone is experiencing difficulty breathing, or has a build up of secretions.

    The cough assist machine also helps clear secretions from the lungs by helping you with your breathing. When you breathe in (inspiration) the machine gives you air (positive pressure) to help expand your lungs, when you blow out (expiration) the machine creates a sucking force (negative pressure) that pulls the air out of your lungs. This rapid change in pressure during different phases of breathing helps make your cough stringer and more effective.

    A cough assist clears secretions by gradually applying positive pressure to the airway then rapidly shifting to negative pressure. The rapid shift in pressure produces a high expiratory flow, simulating a natural cough.

    BENEFITS OF COUGH ASSIST
    • Removes secretions from the lungs
    • Reduces the occurrence of respiratory infections
    • Safe, non-invasive alternative to suctioning
    • Easy for patients and caregivers to operate

    A cough assist is typically used to mimic an effective cough and used as a preventative measure twice daily in morning and evening, or more as needed during a cough or cold that can quickly lead to pneumonia.

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