After a 20-minute Tai Chi session, I prepare myself for a visit to the gym. My walk to the gym is more like a stumble but I manage, hoping I don’t look as awkward as I feel.

I check to make sure no cars want to turn into Brady Street and step off the footpath and hurry as best I can, urging my legs and body on when it doesn’t want to. I think I must look like a drunken sailor!

Past Officeworks and the Mosman Hotel I stagger along. Good! Here is a chance for a mini rest at the next intersection where there are traffic lights and then I continue the short distance to the gym.

I know I will be okay once I am in the gym because my body at this stage still obeys me. First activity is an energetic 10-minute session on the bike, then the leg-press and so on until the hour is nearly up. Then it is time for the mandatory stretching session and time to leave for home.

It is surprising to me that I can perform at the gym while – due to motor fluctuations –  it is during relaxed moments when the automatic muscles ‘play up.’ For instance when I am sitting, drinking coffee, and talking to friends my legs keep moving.

Initially I am not aware. But when I do become aware, unless I concentrate on making my legs stay still, I cannot stop them from their continuous movement.

When I am standing and putting on make-up or talking to someone, I start swaying sideways – left-to-right and right-to-left. Again, I cannot stop the swaying unless I concentrate on staying still.

My diagnosis

I was diagnosed in late 2009 when I was 61 years old and since then the Parkinsons has moved slowly. I have been lucky.

It started innocuously enough. In late May 2009 I had left my job at corporate consultancy PwC and was sitting in a local café, sipping coffee with a fellow committee member of the Owners’ Corporation. We were chatting about minor but annoying events that happen in a block of units and I was holding my cup of coffee in my right hand.

Out of the blue, my companion said: “Why is your hand shaking?”

“What?” I responded, “it is probably just stress.” I wasn’t particularly worried. Work had been very stressful, leading up to my recent resignation.

A couple of weeks later I was again having coffee with the same friend, and he asked: ”Did you ever go to your doctor about your tremor?” “No,” I respond.

“Well, no more coffees with you until you have seen your GP.  Your right hand is still trembling. Do you think you are still stressed?”

He insisted I make an appointment with my GP. My GP gave me a referral to see a neurologist, who had rooms in St Leonards.

Resting tremor?

Initially the neurologist suggested it was a ‘resting’ tremor and no decision or diagnosis was made.

I have since learned that often professionals suggest you have a resting tremor before making a definite diagnosis. I am sure they are waiting for more symptoms to develop. Granted, there are many reasons for someone to develop a tremor or shaking of some kind. The neurologist wanted me to return approximately six months later.

There was no hesitation at this second appointment – I had Parkinson’s disease. When I was told I wasn’t particularly upset. I was more worried about how I was going to tell my parents because I knew they would be distressed on my behalf.

It was at this time that I decided to retire. When I had resigned from PwC approximately six months earlier, I had toyed with the idea of going back into the workforce. But now that I had the diagnosis, I had to live life to the full.

For me, workforce plans were out the window. Instead, I planned to concentrate on what I wanted to do while I was still active and physically able.

Within six months, I became increasingly aware of the tremor in my right hand. There were many instances when I would try to disguise the tremor – for instance while standing at a bus stop, sitting on a bus, at a social event, or waiting on the corner for a friend. I felt conspicuous and self-conscious and could imagine people looking at me, whispering: “What’s wrong with her?”

Beginning medication

My neurologist didn’t prescribe medication for at least another year. When I did start on a minimal medication course, I was thankful that my right-hand tremor almost disappeared and my writing (which had become smaller) was back to normal size.

Now it is 2024 and for the past six to nine months I have noticed changes, but not good ones. For instance, today I have been aching all over, slow to take a step, experiencing tension in my legs which builds up as I attempt to take a step forward or shuffle sidewards. Luckily when I am out it doesn’t affect me as much. It happens more often when I am at home in familiar surroundings.

I am beginning to feel a little less lucky, but life with Parkinson’s isn’t all bad. More and more research is coming to light which has the potential to assist those living with Parkinson’s. Hopefully, this will make our future more promising.

In the meantime, I haven’t been sitting around, twiddling my thumbs!

In the five to ten years before COVID I went overseas and saw parts of Australia, with nearly every year fulfilling long-held dreams.