“I fell asleep driving my wheelchair”

Royal Talbot Rehabilitation Centre, Kew

With two patients, clinicians and broadcast quality video.

Melbourne researchers have found that more than 80 per cent of people with quadriplegic spinal injuries have sleep apnoea. It’s having a big effect on their lives, but many don’t know they have it, and they don’t know it can be treated.

The researchers are calling for everyone with quadriplegia to see a doctor if they are tired and fatigued, and they’ve produced videos demonstrating the impact on patients’ lives.

“I was so fatigued that I would fall asleep even when I was driving my wheelchair,” says Ben Gruter, who has T5 paraplegia and is a retired public servant. Today, his energy is restored and his grandchildren ride around the block with him.

“Our research found that 80 percent of people with quadriplegia have serious tiredness and fatigue due to sleep apnoea,” says Dr Marnie Graco who recently completed her PhD on the subject at the Institute for Breathing and Sleep (IBAS) at Austin Health and The University of Melbourne. “We found that most cases are undiagnosed, with patients just assuming tiredness is just part of the burden of spinal cord injury. So, we reached out to patients and asked them if we could tell their story, to encourage everyone with spinal cord injury to talk to their doctor about sleep apnoea.”

The result is a series of video case studies released today. The videos feature four people who found that acting on their sleep apnoea transformed their lives and their interactions with friends and family. The videos were produced with the support of the Transport Accident Commission (TAC).

Sleep apnoea is a kind of breathing disruption during sleep that has been linked to serious health problems including constant tiredness, poor concentration, heart attacks and depression. It affects up to 25 per cent of the general population, but it is much more common among people with spinal cord injury.

“You might have sleep apnoea and not know it,” says Professor David Berlowitz, a physiotherapist at The University of Melbourne and IBAS. “If you snore, wake up tired, or you nod off during the day go and see your GP for a sleep study and, if needed, a treatment plan. Sticking to the treatment plan may be challenging but it can make a huge difference to your daily life.” A common treatment for sleep apnoea is the use of a Continuous Positive Airway Pressure (CPAP) machine during sleep.

“I love my CPAP machine, but I hate my CPAP machine,” says Kate Herd, an author and designer who has C6/7 quadriplegia. “Using CPAP means that I can wake up in the morning and feel like I’ve actually had a pretty good night’s sleep, I can do all the things I want to do in a day. I’m glad that I use it and I wish I’d started using it sooner.”

“If you have had children you can remember what you felt like when they were little and your sleep was short and very interrupted,” says David Berlowitz.

“That is the feeling untreated sleep apnoea gives you. For over 20 years our collaborative team from the Institute for Breathing and Sleep, Austin Health and the University of Melbourne have led the world in identifying and treating the sleep disorders affecting people living with spinal cord injury,” David says.

“These videos are critically important for our research because it is people with spinal cord injury leading the charge and our job as researchers is to respond to that community need.”

/Public Release.