Judy McCracken is the wife of Parkinson’s person Neil. This is her take on their journey …
The first thing I noticed was that his right arm wasn’t swinging like his left. When a neurologist in Melbourne confirmed Neil had Parkinson’s, it was one of those life-changing moments that took some time to comprehend. In the space of a few minutes, our lives had changed forever. That was back in 2010 when we were working and travelling in Australia.
Over the following decade, Neil had his yearly consultations with Prof. Tim Anderson, in whom we trust implicitly. We gained a lot of knowledge and felt very well looked after with respect to Neil’s medications and support network. When his meds were working, they were the best things since sliced bread.
Neil met Tim Webster in 2018 and became the first member of what has become the High Performance Parkinson’s exercise group. This was a game-changer for Neil from a physical and mental perspective; it became his Parkinson’s family and a powerful influence on his (and my) life.
In truth, the uglier side of Parkinson’s didn’t really affect us until around 2020, when I noticed Neil’s shuffling and stiffness, which began to take more of a hold as time went on. It was a trying, unpredictable time. Neil started to get muddled, a little angry and confused. This led him to withdraw from some conversations and get-togethers, which made me sad.
On a positive note, we decided to turn our garage into Neil’s man shed, which gave him a happy place where he could make stuff. But, as time passed, he spent less time making things and more time undoing what he had made and trying something else.
Another big challenge was driving. His perception of where the white line in the middle of the road was seemed to vary, which made for some scary trips. Parking was also a challenge as his stiffness in his arms became worse. One of the hardest things I have ever done in my life was to tell Neil it might be best for me to drive.
Choking episodes for people with Parkinson’s can be a problem. Neil has had three. The first two were frightening enough, but the last episode resulted in a fall. I couldn’t hold him up while, at the same time, trying to do the Heimlich manoeuvre and thump his back.
Neil also experienced something called punding (an intense fascination with a complex, excessive, non-goal-orientated, repetitive activity). He would spend hours in the garage making a variety of wooden articles, only to undo them days later and make something else.
I remember one day in particular, after sucking up the leaves with the outdoor vacuum cleaner, he returned to the garage without the vacuum or the extension cords. I duly brought them all back to the garage and asked Neil if he would like to wind the cords back into the trolley. I stood in the lounge crying my eyes out, as he wrapped them around the wrong part of the trolley, and himself. Out I went and ever so carefully untied him from the cords and the trolley. We decided to call this the work of Mr Parkinson.
Did I mention that Neil was a good golfer? When I say good, he got down to a one handicap at his best. Fun fact: his tremor disappeared completely when he stood over a golf ball. Giving the game away in February 2025, along with fishing (his other great passion), was another distressing reality.
Showering, dressing, and making his own breakfast became too difficult to manage on his own. But I loved those times helping him as we became even closer and so grateful for each other.
Long story short, Neil ended up in Burwood, where his meds were changed. Unfortunately, he was given too much dopamine, which resulted in aggression, confusion and no sleep. It was horrendous for him and for us as a family watching on. Neil was moved to the Secure Rehabilitation Centre at Burwood, where the doctors got him stable and calm, then worked on his meds.
I must admit, there was a time when I thought he wasn’t coming out of Burwood, but he’s a fighter, and he has. To his credit, Neil has accepted where he is, and he realises I cannot look after him at home anymore. Having been together for 52 years, it breaks my heart, but Neil is moving to Bupa Ballarat in Rangiora, which is very close to the family home and will bring us closer together again.
We have had an amazing time together, our love for one another is maybe stronger than ever, and this isn’t over yet. So, until that time comes, we will play the hand we have been given and live life to its fullest.
With love to our sons Robert and Tim, their wives Katie and Suzy, and grandchildren Peyton, Libby, Mason, and Theo. Plus my sister Sandie and husband Keith, Neil’s brother Kevin and wife Lyn, and Neil’s sister Jenny and husband Barry – along with many close and supportive friends.
