My journey with Parkinson’s disease

YourLifeChoices’ regular travel writer Max Williams explains how this series came about.

I have known Winston Spence and his wife Kathy for 17 years. They are one of the nicest couples you could ever meet. Winston recently distributed his blogs of his Parkinson’s disease journey to close friends and family. I was very moved by his story and encouraged him to present it to YourLifeChoices for publication. It is such an uplifting tale of personal hardship and resilience. Hopefully, Winston’s story will raise awareness of this insidious disease.

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The early days
It started about seven years ago when we were flying to Vancouver to begin another travel adventure – this time a cruise to Alaska and some sockeye salmon fishing. I had been asleep on the plane and when I woke up I noticed my jaw and mouth were very stiff. It didn’t worry me at first as I thought jet lag was the problem. Kathy had also noticed that my speech had got a lot quieter.

When we arrived and caught up with our friends, they also commented on how quiet my voice was. As well, during that time, I was getting increasingly tired – I put it down to too much alcohol, late nights and laughing too much. When we came home some weeks later, I could sense that my speech was changing, but at that stage I wasn’t overly concerned about it.

When I think about it, the early signs of Parkinson’s were probably there during the previous couple of years when we were onsite managers of a Management Rights building in Mackay, Queensland. It was a high-pressure job with lots of staff and guest issues. I wasn’t sleeping well, and I was very stressed. Some nights I wouldn’t sleep at all. So, we sold the business in late 2012 and returned to our home in Noosa, to hopefully get our lives back on track in our retirement. During this whole period, I didn’t feel the need to go to a doctor.

A while after our Alaskan trip, I noticed that the right-hand side of my body was affecting me. My shoulder had dropped, plus my right leg was dragging a bit. Kathy also commented that my voice level had dropped even further, and I was slurring my words – nothing to worry about now that we were in a stress-free place and retired. I thought it would just be a matter of time and I would be back to normal – walking and getting my life back. A few good nights’ sleep and I’d be back to being bulletproof.

The diagnosis
I remember the day I was diagnosed as if it were yesterday. It was early in 2014 that I had an appointment with my GP for a regular checkup. I was 63 years young. I had my list of questions to ask him, including Kathy’s request about my slurred speech. I was sitting there, all done, and after he had written out my scripts, I asked about my slurred speech. He took notice of this, and after a string of questions he told me I may have had a small stroke. Wow! That knocked the socks off me. Then he told me a small stroke was often followed by a major stroke. I admit that I left the doctors surgery feeling a bit down.

I waited a couple of days to get an MRI scan. In the meantime, I started reading Dr Google and got scared. I was relieved to get my results back indicating that I hadn’t had a stroke. I was looking at my GP with many thoughts going through my head – what did I have? It was then he said, “I think you have Parkinson’s disease.”

What the hell is Parkinson’s disease? I always thought you had to have the shakes with Parkinson’s. Anyway, he said he would get me in to see a neurologist. He also said, “Don’t go home and read too much into it yet, let’s wait and see what he says.”

So, off home to tell Kathy. She remembers the day I told her. She was standing in the kitchen when I walked in. I said, they think I have Parkinson’s disease. She was shocked.

A good friend of ours got Parkinson’s before he was 40. He’s 70 now and has suffered over the years. He is a shaker. I don’t shake at all, so I didn’t really believe I had Parkinson’s. I’ve got to admit, though, after I told Kathy, we had a few tears and a cuddle to console each other. But really, I thought if I have it, it is minor, so let’s get on with life.

We started back with Dr Google. There are many good articles to read about Parkinson’s, although some of the information is a bit out there. But after a day or so I remember saying to Kathy, if this is what I have got it’s not too bad. Well, not as bad as multiple sclerosis or motor neurone disease. You don’t die from Parkinson’s, but you die with it. That gave me some comfort, although I still didn’t believe I had it.

After a couple of weeks, I had an appointment with a neurologist based at the Noosa Hospital. Kathy came with me. When I saw some of the patients in the waiting room, I thought there’s nothing wrong with me. The doctor gave me the once over, “Walk up there, now back again”, tested my reflexes, asked me to follow his finger with my eye and that was about it. Now for the result – yes, you are in early stages of Parkinson’s disease. I remember asking him where I was going with it and he told me there were over 50 types of Parkinson’s. Mine was affecting my speech, my balance, my handwriting and my right arm wasn’t swinging when I walked. He gave me a score 1.5 out of 10.

I think when we left there, even though it was a low score, we were quite relieved it wasn’t a terminal disease like MND. The concern was the uncertainty of how bad I would get. Back then, I never thought I had Parkinson’s; now I know that I was in denial.

Tomorrow
Part 2: Winston’s family and friends react to his news, travel becomes a greater priority and the need for medication is apparent.

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Related articles:
https://www.yourlifechoices.com.au/health/your-health/get-fit-to-fight-parkinsons
https://www.yourlifechoices.com.au/health/news/does-coffee-help-you-lose-weight
https://www.yourlifechoices.com.au/health/your-health/common-nutrient-prevents-alzheimers

Written by Winston Spence

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