Gary’s Journey with InstaCare

Hi Readers, I’m Gary Covington, a long-term survivor of motor neurone disease (MND) who was diagnosed in May 1993. I was only 38 and had, up to that point, been enjoying life with my two lovely daughters, aged only 9 and 7 at the time. Today, they have precious few memories of the days when their father could walk or talk.

Gary-Jacqui-Matterhorn-with-St-Bernards

If you’re familiar with MND, you may be wondering by what miracle I am still here today. Luckily (if that is the right word to use), I have a form of the disease known as primarily lateral sclerosis (PLS), which mainly affects the brain’s upper motor neurones. This is very different from amyotrophic lateral sclerosis (ALS), a more common disease which progresses much faster and affects both the upper and lower motor neurones of the brain. Whilst ALS is a life-limiting disease, with a life expectancy of between two and five years, PLS is generally considered to be a disease that you die with, not of, despite its potential to leave someone very disabled.

Within five years of my diagnosis, I could not take a single step without the help of a walking frame and even close family members struggled to understand my speech. To combat the speedy progression of my PLS, I started taking a wide range of antioxidants and, after around six months, was pleased to discover that my symptoms did not worsen. Whilst most medical professionals would consider this a natural element of the disease, I credit the antioxidants for saving my quality of life.

Daniher’s Drive Wangaratta

In the 20 years since beginning my antioxidant regimen, my disease has progressed somewhat, but I am still largely self-sufficient. For example, I don’t need my wife Jacqui to help me get out of bed, eat, or drive. Jacqui has a passion for horses and loves spending time doing equestrian stewarding, so I am committed to keeping safe and allowing her to follow her dreams. For example, I always keep my mobile phone to hand and own a handy pendant alarm that is automatically activated if I take a tumble and was purchased with generous funds from the NDIS. Whilst I am always careful to try not to fall.  Jacqui now really struggles to help me up, so we’re hoping the NDIS will fund a device to get me up with little assistance from her.

As you may have already ascertained, I refuse to let MND control my life and am committed to helping others. After finishing a role in the IT sector in 2007, I immediately started volunteering for MND Victoria and have been helping update their website and bi-monthly newsletters ever since. Over the years, we have raised around $10,000 to help improve the lives of those with MND.

The NDIS and their support co-ordination services have been an absolute Godsend. NDIS plan management has helped to equip us with the tools and information necessary to help me cope with my disability like never before. As well as saving us an incredible amount of money on equipment such as mobility scooters and rollators, I have been able to start twice-weekly physio sessions that have significantly improved my mobility. When I started on a special treadmill, I could only manage to complete a distance of around 150m at 0.6km/h. Just before lockdown, I managed to ramp my capabilities up to over four times that speed!

Last year, the NDIS purchased an amazing lightweight folding wheelchair that splits into two parts and is super compact. This means that Jacqui (at an impressive 66 years of age) can lift it into the boot of the car. This meant that we could participate in the 2019 Daniher’s Drive challenge and raise around $6,500 for a charity called Fight for MND – an excellent result!

Daniher’s Drive sets off from Werribee Open Range Zoo

We love the NDIS and the amazing people at Instacare, all of whom have gone out of their way to help me and my family. We opted for the managed plan from the outset as it has helped me to navigate the NDIS quickly and easily. As fabulous as it is, the NDIS can be a little tricky navigate at times, so Instacare offers the perfect solution to help me manage my care and budget.