Neurology, dopamine, levodopa, rigidity, tremor, young onset, insomnia… words that now swim around my mind and are solidifying into my subconscious.

My 35 year old husband has an incurable, degenerative, neurological disease. We have been assured that among the neurological family of diseases, this is the best one to have. A morbid and strange utterance to hear.

The first of many future scripts is filled, detailing a new medication that will hopefully alleviate the symptoms that have now found a home in my husband’s body. New medication that will become so familiar to us, so recognisable, yet so despised.

We are hopeful that this medication takes effect – confirming the diagnosis, as we dare not open other doors that may hold far more sinister realities. The words Motor Neurone are heard and our expressions are fixed with a mixture of horror and disbelief. I will my silent tears to stop from falling and quietly pray that this new medicine is effective, avoiding grim alternatives.

I force thoughts and visions of our future out of my mind. I continually bring myself back to the present, trying to focus on the here and now and what lies ahead of us – sharing this news with our family.

We tell our precious girls, who at the time, were 8 and 5. They comprehended what they were able to grasp, most likely not understanding the gravity of this new life path, that they are now unwittingly heading down. What does this mean for them? How will their lives change? How much will their Daddy change?

We share the news with our parents and siblings, my stomach in knots, relaying the information over and over. Shocked, saddened, pensive faces match ours. Kind words spoken, warm hugs given.

The medication takes effect. This is it. Outside, the change of seasons has commenced. Trees abandoning their leaves for another year, glistening frost covers the ground just before we are gifted with another sunrise, heralding the start of Winter.

A new season. Denial.

The beginning of a new school year. I had started a new teaching position, teaching drama, visual and media arts in middle primary classes and team teaching a Year 1/2 class. I was excited to have won a teaching position, and I was looking forward to teaching what I love most, Creative arts.

It was a Thursday and I was driving home from work. What dominated my thoughts was one single sentence, “Please don’t let it be a brain tumour”. I knew that Todd was at Flinder’s Medical Centre having an MRI and seeing a specialist. Little did I know what lay ahead of me when I arrived home.  

I found Todd in the office sitting quietly, looking pensive. I immediately asked him, “What did the doctor say? Is everything ok?” He did not reply straight away, and as he sat in the office chair, nothing at all prepared me for his reply.

“I have Parkinson’s”

“What, what do you mean?” I could feel my panic rising. How can this be? What the hell? Where has this come from? I felt confused and shocked, I couldn’t believe it. This news had snaked its way into our beautiful Adelaide Hills home, which I adore, without any warning and had now decided to permanently move in, without any intention of leaving, like an unwanted house guest. 

All I remember from that evening is calling my best friend, desperately needing to find solace in someone who knows me so well. I remember blurting out the news, most likely incoherently. Claire listened, consoled and was a source of much needed strength.

I do not remember the next few days, they all blur into one. What remained constant, what continued to replay over and over in my mind was that one, ugly word, PARKINSONS. I saw it written in bold capital letters, sneering at me, it had imprinted in my brain. I saw it as I waited for sleep to come and it greeted me as I awoke in the morning, like garish, stage clown makeup.

As I arrived at work on Friday, desperately trying to be brave, to somehow lock that vile word away in the deep recesses of my brain, to hide it, to deny it. As I walked into the school office, I saw my lovely, supportive leaders and my brave demeanour betrayed me. I broke character, crying, the news spilling out like a burst dam.

This was a new beginning, my new reality. Life now would forever be altered.

 -Through Todd’s lens