As part of the ALS Therapy Development Institute’s Endpoints Podcast series Gabrielle Bellitti, our Community Outreach and Engagement Specialist, recently spoke with Collin Hadley, who has been living with ALS for nearly five years. They discussed his diagnosis, journey and in particular his decision to use a ventilation machine to assist his breathing. Collin was diagnosed with ALS in October 2014 and since then he and his family have been living by the mantra, “Don’t count the days, make the days count.”
Following his diagnosis, Collin wanted to be as active as he could for as long as possible so he has taken advantage of everything that could help him achieve this. As his pulmonary breathing scores worsened he realized that it would be necessary for him to use a noninvasive ventilation machine to help him breathe. He began by just using it at night, but it came to a point where he was forced to use it 24 hours a day and has been doing so for a couple years now. “It’s essentially a life-saving device for me. I would not be able to breathe without it,” he said.
The machine pushes air into a person’s lungs so that they can continue to breathe and speak even as their diaphragm weakens. “I think one of the best things for me personally, is that it has enabled me to still communicate. I’ve been able to keep my voice as strong as possible through the consistent use of this machine,” said Collin. He personally uses the Trilogy noninvasive ventilation machine. The Trilogy machine is portable and attaches to the back of a power chair allowing Collin, and everyone else who uses it, to stay mobile. It is also designed to give you a warning when the battery is low, if there is a leak in the mask or if something else is not right. The Trilogy machine has been very beneficial for Collin but he recommends speaking with a pulmonologist to determine the best machine for each individual case.
Collin understands that the decision to use a mechanical ventilation machine is a difficult one for many people to make, but wants everyone living with ALS to know they aren’t alone. “I think one of the biggest things is not being afraid to ask because there are so many people who want to help,” he said.
To listen to more episodes of the Endpoints Podcast, click here.