My [Parkinson’s] Life
Having Parkinson’s is just one aspect of a person’s life story. We want to share more stories of the varied lives of people currently living with Parkinson’s.
Keeping it Simple
By Marty Cobcroft, 61
It just didn’t look right. As I watched the replay of a short promotional music video I was shooting, my left leg was shaking and it wasn’t in time with what I was playing.
It was a little confronting. Just like the chronic, acute lumbar pain that no one could really see a justifiable cause for. And the unexpected and numerous bouts of fatigue? The fact that I hadn’t been able to smell anything for years?
These instances were happening throughout 2016. I was very busy, teaching, writing and recording – music had been my profession for almost all of my working life. But behind it all, from 55 years of age, these nagging, painful and uncomfortable symptoms became more insistent.
A chiropractor I was seeing for my back pain noticed a resting tremor in my left leg. She advised me to see a neurologist.
However, as the saying goes, life gets in the way and I plodded on. And then things changed. Everything had slowly become worse and the painful cramping in my lower back and my left foot were more insistent.
Some mornings, I felt I just couldn’t get up. The tremor, mainly in my left leg, was a daily occurrence around the clock and I found that my sleep pattern had changed to only three to four hours a night maximum, almost every night.
Some nights I wouldn’t’t sleep at all and I’d sit in the dark, wondering what the hell was wrong. I was in a constant state of chronic pain, discomfort, and fatigue.
In January 2018, a colleague insisted I go see my doctor. I was beginning to worry now. And I was worrying my wife and other people, which I couldn’t tolerate.
I obtained a referral from my GP to a neurologist . He was a very kind, patient and approachable specialist; we discussed my symptoms. He was very cautious, very thorough. In August 2018, the diagnosis was Parkinson’s Disease. I was 57.
I was understandably shocked. Now, the three main symptoms for me – pain, dystonia and that nagging tremor – had reached a point where I could no longer work as I had.
I was having regular sleep attacks throughout the day. I tried to see the humour in some of these. One afternoon my wife and I were at a pre-school end-of-year concert for the children of close friends.
There were at least 50 or more adults and children, talking, laughing and making more noise than some rehearsals I’d had. I was sitting quietly right up the front, in the thick of it all, asleep. Oblivious.
Still makes me laugh. But there were more serious overtones to these episodes. They began to happen when I was driving. Or when I was in a restaurant. Sometimes when visiting friends.
Static positions became mine fields of discomfort. I could no longer feel confident in being able to play gigs. I could still do session work but that’s erratic and not a constant.
Mornings were especially bad. Turning over in bed had become a process instead of an easy transition. I had ceased to move as much during sleep and would wake every morning feeling like I was walking through thick mud. My posture and gait started to reflect the symptoms and my arms no longer swung as they should when I walked. I had begun to stoop.
I began to research Parkinson’s. The only way I was going to be able to deal with this was to stay informed and active. To keep moving. I knew very little about Parkinson’s before I was diagnosed so I set about changing that. My new job was to learn, move and concentrate on the blessings in my life. And I have more than my fair share of those.
I contacted Parkinson’s NSW and was supported wonderfully. Then, I engaged a terrific occupational therapist, physiotherapist, and several exercise physiologists.
They continue to look after me, three mornings a week with excellent programs that keep me active. I reduced my caffeine intake – no coffee after midday as it was exacerbating my tremor and just adding to my sleep issues.
I found a local boxing gym that trains for Parkinson’s with the Knock Out Parkinson’s Program and started training three times a week. It became evident that the quality of my life was acutely proportionate to the effort I put into exercise, diet and maintaining my mental health each day. It’s not good enough for me to simply take the drugs I’m prescribed and spend my days watching Netflix.
But as a musician, I was worried about how I might be affected. Primarily, I’m a session singer and I’d learned that one of the more common symptoms is softness of speech. Fortunately, to date, this hasn’t affected me.
To be unable to do it is not something I like to think about. But we are only given a day at a time to live and at present, thankfully, I’m still able to write, record and produce music. Since 2018 when I was diagnosed, I’ve had a number of releases and I’m continuing to work on albums.
While I don’t play live music anymore, I’m still able to do session work. Life still has its rewards.
The real wealth in my life is the quality of the people in it – personally and professionally. I’m privileged to have them, especially my wife, Amanda, who is easily the best person I know. It’s no picnic for the partners and carers of those with Parkinson’s and they deserve the very best in life.
Parkinson’s is a complex thing, so I keep it simple. Things could be so much worse.
Learn more about Marty Cobcroft’s music and photography at: