Learning how to use a Passy Muir Valve was difficult, but worth it

Last in a series. Read part one here.

Previously, I wrote about an extremely important topic: safety while using the Passy Muir Valve (PMV). This wonderful tool helps people with a tracheostomy improve their vocal communication by redirecting “airflow through the vocal folds, mouth, and nose.”

However, all tools have the potential to harm us if safety precautions aren’t taken. When people use power tools to build a house, they take safety measures to avoid a life-threatening emergency.

Likewise, if my neck is bent too far forward while using the PMV, my upper airway will be blocked, creating a life-threatening emergency for me.

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I remember well when I started using the PMV at age 3. I had received my tracheostomy a year earlier and was using a ventilator. I was introduced to the Passy Muir Valve as I was being weaned off the ventilator during daytime hours. The benefits would be huge, but it would take me quite a while to get used to the device.

What I would tell patients, nurses, and caregivers using a PMV for the first time is that patience is crucial for all parties involved. Also, everybody should educate themselves on the device as much as possible before using it.

The PMV provides an opportunity for caregivers to form a trusting relationship with the patient during the adaptation process. The caregiving team must put themselves in the patient’s shoes.

Getting used to the Passy Muir Valve

When I first started using the Passy Muir Valve, it felt like my airway was blocked because I didn’t know how to breathe with the device. Whenever I practiced breathing with the PMV, I had someone right there who could take it off quickly when needed, before a respiratory emergency occurred.

Everybody is different, but it took months for me to adjust to breathing with the PMV. You can’t tell someone to just “get used to it.” It’s not that simple.

Again, trust is required. The patient needs the gift of reassurance that they will be closely monitored while wearing and getting used to the PMV. They need to know that a caregiver will take care of their breathing needs.

After months of trying, one thing that helped me get used to breathing and talking with the PMV was having a distraction.

I was home-schooled during preschool and much of kindergarten. By the time I started home-schooling, I had improved enough with the Passy Muir Valve that I could at least say short answers verbally.

My teacher would ask me a question, someone would place the PMV on my tracheostomy so that I could answer, and then the PMV would be taken right back off.

One day I became so engaged with my lesson that I didn’t even notice that the device had been on for 30 minutes. After that, my tolerance increased more and more, until I could wear the PMV all day. At night I would go back on the ventilator, as I do now.

My advice for getting used to the PMV is to do whatever it takes to distract yourself when it’s on. Other people can help by engaging in fun activities with you, preferably ones that involve talking. When this is done successfully, breathing and talking with the Passy Muir Valve will probably become like second nature.

Please remember that these experiences are told through my eyes and perspective. Everybody has their own story. Some may be able to handle the PMV instantly, like magic. Others may be unable to handle it due to an occlusion or narrowing of the tracheal walls, requiring further treatment.

The rich joy my Passy Muir Valve brought

I don’t want to make it seem like getting used to the PMV is a near impossible obstacle and not worth all the time and effort.

What I gained from using the Passy Muir Valve far outweighed the difficulty of adapting. By helping me talk, it brought me a treasure load of friendships over the years. Those friendships have resulted in memories that add a rich texture to my life.

As I said in a previous column, I now use my TD I-Series computerized voice device in addition to the PMV. They both are great tools that allow me to use my real voice as well as my computerized voice.

In short, the Passy Muir Valve has helped me zoom up many of the mountains I face with SMA and allowed me to accomplish many goals in life. Being at the top of a mountain has a way of bringing you not only the world, but also a world of hope.

Continue to enjoy the view with me next time!

Note: SMA News Today 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.