Patient Perspective

Saying Yes to Opportunities

By Christine Kozikas

My story started in 2015 when I fell at the counter of the news agency I worked in, and a co-worker humiliated me by sharing security camera footage with every sales rep that came into the store. Little did I or they know that what appeared to be an embarrassing mishap was actually the first sign of something more sinister.

By December of that year, I noticed that I couldn’t pick up the coins from the register and my handwriting had deteriorated so much that I knew I needed to investigate further. I was sent to a neurologist where I was assessed doing different exercises and as a result, I was diagnosed with Parkinson’s Disease. In the moment I thought that was the worst day of my life.

In 2021, I was given some hope with the potential for a deep brain stimulation procedure but after further testing, I received a phone call telling me that I had been originally misdiagnosed and instead had MSA. I then realized that this day instead was the worst day of my life. I have been battling MSA since this time and continue to deteriorate with my body constantly letting me down, but I am determined to not give up.
I now rely on my wheelchair and other support full-time and while initially hard, I have learnt to adapt and accept help along the way. I have built a fantastic support system of people who have added value to my life and help me to make the most of what I can still do. With their support I have continued to travel locally and interstate to maintain connections with my friends and family.

I have a new appreciation for disability access and seek out accessible ways to still participate in the community and socialize. I have also made valuable connections and friendships within the MSA online community. This led to me recently participating in a US webcast, which was by no means an easy feat given my difficult speaking. My advice to others is to say “yes” to any opportunities to connect with others or get out and about and find adaptive ways to participate. I know that the road ahead will be hard, but I am determined to keep finding ways to live my life to its full potential and I encourage others to find sources of joy despite the hardships.