A Love Letter to the Cough Assist Machine

This column is my love letter to the cough assist machine.

I love the assistive device and what it does for my three sons, Max, Rowen, and Charlie, who live with Duchenne muscular dystrophy (DMD).

Twelve years ago, I had no idea what the heck a cough assist machine was, or that it even existed. I didn’t know that people might need help coughing until a few years after the boys were diagnosed with Duchenne. I didn’t understand that weakness in the diaphragm made it difficult to cough and clear secretions.

A cough assist machine helps the boys by delivering gradual positive air pressure to the airway, followed by a shift to negative air pressure, making them cough. We’ve learned how valuable this machine is whenever the boys get sick. Without access to this tool, we would likely end up in the emergency room every time the boys got a cold.

Recommended Reading

March 1, 2022 News by Margarida Maia, PhD

LGMD Gene Therapy ATA-100 Wins Orphan Drug Status From FDA, EMA

We got our first cough assist machine six years ago when my oldest son with DMD, Max, turned 10. I asked for one when we met with the pulmonologist during a neuromuscular clinic visit. I didn’t completely understand what I was asking for, but from what I’d read, I knew it was critical for caring for the boys.

Once we received a prescription and our local medical supply company delivered it, the respiratory therapist provided us with two settings, one for therapy and one for illness. A cough assist machine can have many benefits beyond helping my sons clear secretions and cough when they are sick.

At first, I was intimidated by it, much more so than the boys, who took to the device immediately. It was emotionally overwhelming because using a machine on my children seemed to signal that we had reached another level of care. I had never needed to use a device to keep my kids healthy. The issue for me was my frame of mind, because the machine is very user-friendly.

We try our best to use it daily as a therapy to keep the boys’ chest and abdominal muscles as strong and functional as possible. We have two machines right now, but after a week of battling influenza, I know we are ready for a third so that Charlie, our youngest son, can have his own. Until now, Charlie has used air stacking to exercise his lungs. But this week, he gave his dad, Jason, and me a couple of scares.

Charlie was coughing and suddenly felt like he couldn’t breathe, so he started to panic. Jason and I don’t panic easily, but seeing him struggle for air did it.

I thought, “We need the cough assist.”

I ran into the room he shares with Rowen and grabbed Rowen’s machine. It was the first time in his 11 years that Charlie hadn’t been able to cough on his own while ill. If we hadn’t had his brother’s machine, we probably would have ended up in the ER. It scared us.

Immediately after getting Charlie started on the cough assist, he cleared secretions that must have been blocking his airway. After it happened again, we began to use the machine every time he coughed.

We had extra sets of tubes and masks, so we gave Charlie his own set, and when Rowen came down with influenza a day later, we were able to avoid cross-contamination. But it is time for Charlie to get his own machine.

After our scare, we checked Charlie’s oxygen levels with a pulse oximeter that we purchased to have at home for times like this. It gives us peace of mind that everything is OK, but more importantly, it informs us when things are not, so that we know when it’s time to get the boys more help than we can offer at home. It also provides us with valuable information that we can share with healthcare professionals when necessary.

I never want any of our kids to get sick; it becomes incredibly stressful when our sons with DMD do. Disease progression affects how they respond to even the most common illnesses. Weakness in the diaphragm muscles makes it hard to cough and even breathe.

I would never want to face any respiratory illness without our cough assist machine, and neither would the boys. They have come to depend on the help.

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.