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This is Matt Whyte’s story of Motor Neurone Disease (MND), or rather, the Whyte family’s story, as the boundless love and support of Matt’s wife Yvonne and their three daughters ensured he stayed connected and empowered.
MND changed Matt’s life in many ways, and all too quickly. “Matt went from working 12 to 16-hour days and flying around the country to no longer being able to work, drive, feed or shower himself, hug his daughters, or talk to them. The MND diagnosis impacted everything. It pretty much took everything, apart from his strong will and his big heart and sense of humour. He always manages to see the bright side of it, and anyone that comes to the house says Matt’s an inspiration for that, so I guess that’s what keeps us girls going,” explains Yvonne, who was by her husband’s side from day one, figuring out together solutions to the many challenges and changes the disease brings.
With Matt already having symptoms at the time of his diagnosis, his support team quickly grew to include a neurologist – Dr Rob Henderson, The Nerve Connection Foundation, and Better Rehab for Allied Health support.
How Matt stayed connected
Knowing MND would affect his ability to talk, Matt and Yvonne secured an electronic Augmentative and Assistive Communication (AAC) device with eye gaze technology. This technology uses the movement of the user’s eyes to generate speech which makes it a communication solution for people with MND and other conditions that affect their muscles. Some eye gaze devices, including Matt’s, can pre-record the user’s voice to use when generating speech.
Matt and Yvonne had managed to work out the basics of the eye gaze device, but they wanted to know how to use it more effectively and efficiently and struggled to get the most out of it. “We knew how well this device was going to help Matt,” explains Yvonne.
That’s when they reached out to Brisbane-based speech pathologist Carmen, who was recommended by her colleague and Matt’s physiotherapist, Jason.
Right from the start Carmen displayed the personality and expertise Matt needed to master the eye gaze device. “Her very bubbly personality and knowledge of the way my speech was going to deteriorate was crucial for planning ahead for the technology required to maintain my independence and the essential need to communicate,” explains Matt.
For Carmen, the couple’s positive attitude and willingness to try new techniques and strategies played a big part in helping Matt achieve his communication goals.
“It was really exciting working with Matt and Yvonne as they understood just how well this device was going to help, so they were willing to give everything a go. There was no ‘no’ for an answer! It was great because we could figure out what was going to work best for them, for what they needed, and how Matt wanted to communicate,” says Carmen.
Like all of Better Rehab’s speech pathologists, Carmen not only shows participants and their family how to operate their electronic AAC devices but can tailor the device and instructions to suit their specific needs and help them feel comfortable and confident using them.
With Carmen’s support, it didn’t take long before Matt was using his eye gaze to ‘communicate’ and when he and Yvonne renewed their wedding vows surrounded by family and friends, he delivered his vows and reaffirmed his love and commitment to Yvonne in his own voice.
Helping Matt stay empowered
With MND causing Matt to experience swallowing difficulty, Carmen turned her attention to giving him strategies and techniques to eat and drink safely, without choking and the risk of food entering his lungs, which can cause infection.
Safe eating and drinking improve nutrition and health in many ways from eating a wider variety of foods and not missing meals to improved hydration and the reduction of secondary complications like lung infections. Taking the worry and health risks out of eating and drinking means people can enjoy food again.
About MND
MND is a debilitating progressive neurological disease for which there is currently no cure or effective treatment.
The disease affects the motor neurons, which are nerve cells that carry messages from the brain to the body’s muscles. When a person has MND, these nerves become damaged and die, causing their muscles to become weak and waste, and reducing and stopping their ability to move including walking, talking, swallowing and breathing.
MND progresses differently, and at a different rate, for each person and the average life expectancy following diagnosis is between two and three years. And the cause of the disease for most people remains unknown, with only five to 10 per cent of people inheriting the disease through a genetic mutation.
In Australia, there are currently over 2,000 people with MND, with slightly more men than women, and the most common age range of diagnosis is between 50 and 60 years.
How Better Rehab supports people living with MND
Better Rehab’s speech pathologists, occupational therapists, physiotherapists, and exercise physiologists create tailored support for participants living with MND and other neurological disorders. Our university-qualified clinicians often work together in multidisciplinary teams to provide coordinated and comprehensive support and can consult with specialist doctors on request.
Matt’s legacy continues the fight to defeat MND
Matt and Yvonne chose to share their experience of living with MND to help raise awareness of the disease and help others who are diagnosed in a candid and heartfelt video story [LINK].
Since Matt passed away late last year, his family have continued their dedication to helping find a cure for MND and have set up an in-memory page for Matt to raise funds for the MND and Me Foundation, a charity which funds MND research and support for those living with MND in Queensland.
We wish Yvonne and her daughters the very best and thank them for sharing their story, a story of love the power of love.