30.

When you first get diagnosed with Parkinson’s disease nowadays, the number they tell you is between 10 and 20. That’s the amount of years that people normally live post-diagnosis - after all, it’s a degenerative condition and only makes health complications more likely the longer you live with it.

30 years ago, my grandpa was diagnosed with Parkinson’s disease. On Monday morning this week, the 9th of December, at around 1am, he slipped peacefully into rest at the age of 89. I was lucky enough to see him earlier that evening to say my goodbyes.

That number, 30, is what I keep coming back to.

A bit under 26 years ago, I was born. I didn’t know my grandpa before Parkinson’s. Neither did either of my older sisters. But they do have memories of him being well enough to babysit us when we lived in Sydney for the first four years of my life, even as fleeting as those memories may be. I, sadly, do not.

In fact, I don’t feel like I truly knew my grandpa until a much, much later stage of that diagnosis — over 10 years ago now, when he moved down to Melbourne to live in a flat out the back of our house, while I was still in high school.

If you’re doing the maths, by that point he’s well within that 10–20 year window. He was moving down to us to be closer to family in case of further health complications, and in reality, because he was losing more and more of his independence. Being almost 80, every time he would go into hospital it felt like a little bit of a lottery. With Parkinson’s disease, particularly in its latter stages, any health complication is often far more severe, or even fatal. Your average cold is amplified. The body is constantly fighting. These were the realities of the life that the grandpa I knew was living by the time he came down to Melbourne.

So in the small time since his passing, I’ve found myself grappling with the grandpa I knew, compared to the one of the 80 or so years prior. While I’m saddened by the fleeting time I ultimately did get with him, most Parkinson’s patients don’t get that extra 10 years. So in that scenario, I wouldn’t have been able to really know him at all. And that would have been truly tragic.

The grandpa I’ve known these past 10 years or so could be described in so many words. Stoic. Quick-witted. Strong. A fighter. Some of these things are indelibly tied to his disease, but I know some of them are features that he would have carried with him throughout his life. The sense of humour undoubtedly. Even in his later years, as his speech faltered, there was a always a diamond of a joke hidden amongst the rough. He was a passionate historian also, a trait we shared, and spent much of his time in Melbourne working hard on tracking down his own family’s history — one which previously had largely been lost to time. Part of me regrets how few those conversations over our shared passion were, but I know to regret that would also to be taking away from the moments we did get.

Ultimately I will not know the grandpa of all those years before. That is the stark reality of it, and it’s not an uncommon one in life. Many people have their grandparents taken from them at a much earlier age — at 25, this was the first for me. And the gratitude I feel for that time knowing him, not only as a child, but as an adult too, is something difficult to put into words. I know for a fact that he was so much more than his Parkinson’s, and that disease did not define him and his life, but at the same time, I’ve recently had to come to the complicated conclusion that it defined the version of him I knew. But I am fighting to make that, over time, a much more joyful reflection than such a confronting one. And the world we live in is doing its best to make sure that happens.

When you tell someone that your family member, or anyone you know, has Parkinson’s, there are words and tones of sympathy, elicited for an understandably tough disease to grapple with. One with which there is currently no cure, and that there are still so many unknowns around. At a younger age, such sympathy seemed fitting to me. I was dealing with a grandparent who I saw in constant battle with his body, and I couldn’t truly get my head around what it all meant.

But in my adult years, something has changed. Degenerative diseases are still so tough to wrestle with. Many people have touchstones to dementia that they can pull from, and that time can be an extremely difficult one for everyone involved. Similarly, the inevitably of life after a Parkinson’s diagnosis is still an unfortunate reality, and yet, the hushed tones of yesteryear have been replaced with somewhat more hopeful ones. Such a shift, I think, is vital — not only for those with loved ones impacted by the disease, but also for a wider audience. For those who may only know of the disease because of Michael J. Fox, or simply as two words that they do not know the meaning of, but are terrified of hearing nonetheless. And because for people like me, who only knew one version of their loved one, it allows them to build an image of a time before, even if they weren’t there themselves.

I mention Michael J. Fox — I am yet to actually watch his documentary Still, but I know it has done wonders for destigmatising the disease, as has Fox himself. His foundation is doing amazing work to learn more about Parkinson’s, and having such a public advocate for discussion of the disease is something that was dearly missed in the past.

But the touchpoints I have had in recent years are on a much smaller scale, and yet no less important. The first was hearing of Australian cricket great Allan Border’s diagnosis, and how that changed, but more importantly, hasn’t changed, his way of life since. Growing up watching and playing cricket, the name Allan Border was never far away, and I would watch tapes of some of his more famous moments — the Tied Test in Mumbai in 1986 jumps to mind. He has major trophies and medals named after him. So you would imagine that hearing such an icon had been struck with the same diagnosis my grandpa had gotten all those years ago would be really difficult. But it wasn’t. It was actually very healing. In an interview earlier this year, he opened up on what life was like for him now, eight years on from his diagnosis in 2016. The whole interview was fantastic, and was incredibly valuable for me to hear. Above all else, however, this line stuck out:

“I still play golf. I still go for walks and can do all the things I normally do. I am not running any marathons anymore, but apart from that things are pretty good.”

I didn’t know my grandpa eight years into his diagnosis, and the 90s and 00s were a different time for Parkinson’s. But he retained his independence up until a much later point, and so the simplicity and normality in Border’s words gave me a sense of optimism around a time in my grandpa’s life that I’ll never truly know.

Similarly, Shrinking has quickly become one of my favourite TV shows of the past few years. If you haven’t watched it, you absolutely should — it’s from some of the creative team behind Ted Lasso, a show which equally stands amongst the pantheon of must-watch TV. I have so many reasons to praise this show, from the way it deals with mental health and trauma (far more authentically than many other pieces of media even attempt to), to its shockingly real representation of the often mundane messiness of everyday life. Personally, it has helped to prepare me for the process of losing a loved one — a reality I was yet to experience, and yet one that loomed on the horizon with increasing ominosity as the years went on.

But more importantly, it depicts a character in the earliest stages of the very diagnosis my grandpa was given 30 years ago. Not only do I think it’s arguably Harrison Ford’s best role, amidst an already incredible career, but I cannot explain the gratitude I have for a show that so frankly and honestly depicts what that period of time might be like for someone. I know it’s not going to be a perfect representation of what my grandpa went through — it’s fiction, after all. But the way the show treats it with respect, nuance, and ultimately, an aura of hope, has done an immeasurable amount for giving my grandpa a life in my head that he never truly had before. One before the heavy trembles and frequent hospital visits. One where things were, of course, tough to wrap his head around and process, but he was still independent. One where he still went on adventures by himself, and shared drinks at a bar with friends and loved ones. One where those very friends and family rallied to his side in the immediate moments of a diagnosis that never won’t be a scary one. One where he learnt to accept the help of others, against all his better instincts. And one that ultimately, many years on, would bring him closer to me.

Because yes, Parkinson’s disease IS a scary disease. I’ve seen first-hand the worst of what it can do to a person. And after 30 years dealing with that reality, my grandpa can now finally rest in peace. It’s a relief that he can do so. I am devastated, but knowing he’s no longer suffering from a disease which takes so much from you gives me some solace. He was loved, he was cherished, and he will be missed.

— — —

I didn’t know my grandpa without Parkinson’s, but Parkinson’s also brought me closer to him than I likely ever would have been. How do you come to terms with that? I’m still working on it, but today I wanted to share part of that journey with you, and remember him in what ways I can.

If reading any of this has moved you to do more, I encourage you to read up more about Parkinson’s, and if you have the means, to donate to organisations such as Parkinson’s Australia or The Michael J. Fox Foundation.

But if you just want to help me remember a man who not only surpassed the expectations of many a medical professional, but also gave us so many more years of joy than we ever could have hoped for, open up a beer (or your beverage of choice) for him tonight and celebrate ‘beer o’clock’, one of his favourite hours of the day.

To Grandpa, vale. I know you’re finally resting peacefully. I love you deeply, and I’ll miss you more than you’ll ever truly know.