While we’re currently uploading all our advice resources online, take a look at our Ventilation FAQ. We wrote this PDF guide to explore some of the frequently asked questions people have about ventilation here:
The DMD Ventilation FAQ contains answers to all the questions you might have about ventilation. Everything from what happens when you start it, to what your options are with machines. Jon and Mark, two men with DMD, researched and wrote it. It tells you what it’s like to live with full-time ventilation, life with a tracheostomy, and more.
Starting ventilation can be overwhelming. However, it can really help with some of the symptoms you might be experiencing, from sleepiness and concentration problems to morning headaches. It can help you stay safer and live longer, whether you would prefer to use non-invasive or invasive ventilation.
What does the Ventilation FAQ contain?
This booklet helps you consider what type of ventilator you might want to use. It explores the advantages and disadvantages of various methods, masks, and machines. With Jon using NIV, and Mark using a tracheostomy, it shares a wealth of experience. You can have a great life while using ventilation, living independently and working.
It also explores what happens when people need to think about moving from non-invasive to invasive ventilation. Whether it’s swallowing difficulties and aspiration, or just personal preference, some people will go on to have a tracheostomy. This allows a ventilator to be attached to your throat through a surgical tube instead of a mask on your face.
It also helps you explore things like cough assistance – ways of making sure you are able to cough up all the secretions your lungs produce, suctioning to clear your lungs, and lots of different peripherals you might use with your ventilator, from a nebuliser to a humidifier.
If you’re overwhelmed by the idea of ventilation – or even just want to learn more, this guide is for you.