Scott Roberts, a police officer from Australia, began experiencing symptoms of Parkinson’s disease in 2010. What started as pain in his right hand and shoulder was initially thought to be repetitive strain injury (RSI). However, as tasks like brushing his teeth and handwriting became increasingly challenging, Scott realized the issue was more severe. Following a medical evaluation, he was diagnosed with Parkinson’s and has since been managing his life with the condition.
Scott credits his strength to the unwavering support of his wife and three daughters. Humor plays a crucial role in their household, helping them cope with the realities of Parkinson’s. Scott advises others facing a similar diagnosis to avoid the anxiety-inducing trap of online research and instead focus on accepting and taking control of their lives.
The story is, I’m a police officer. What happened was, in 2009 I started doing a desk job, an administrative job. After about a year and a half, I noticed I was getting pain in my right hand and right shoulder. I put it down to just being RSI. So that went on for quite a couple of years. Then I noticed I couldn’t do repetitive movements with the right hand anymore, simple things like brushing your teeth or repetitive motions like mashing potatoes or something. That sort of gradually got worse. There was also handwriting, so they got really small and l struggled to handwrite. I thought, okay, this isn’t right. So I went to my GP who referred me straight on to a neurologist. I went to the neurologist and within the final session, he diagnosed me. And so obviously I’m being quite lucky in terms of it didn’t take me very long [to get a diagnosis]. I let it go for about a year. But in terms of medical diagnosis, it was nearly three months.
Luckily I had a very good GP who was on the ball straight away. My neurologist was brilliant. He just picked it straight away, and said, I believe it’s this and we’ll try levodopa. It was pretty much an instant. I didn’t accept it in terms of, I didn’t believe it. That’s a different story again. But when you start having positive reactions to medications, you’re pretty much gonna accept what it is. One thing that affected me the most was slow movement. It really wasn’t going to be anything too much else. I don’t think I was that hard-going.
How did your life change after the diagnosis?
Professionally, I had changed to be off frontline policing anyway, so there wasn’t a massive change in terms of professionalism. There was never an issue in relation to employment and issues like that. Personally, it was definitely something that was hard to accept. It was like accepting your mortality and saying something can go wrong and something has gone wrong. You think to yourself, I’ll never happen to know what does happen to you. It took me a long time to accept it, but from here now, I’m getting by. Nothing’s really drastically changed for me.
How have you been able to adjust to the condition?
I reckon last year has probably been harder than the original diagnosis. I’ve been diagnosed for five years now. So I think for about the last three to four years, I’ve been pretty good. This year has been my hardest year in terms of disease progression. So I’d probably say initially it was easy to adapt. But now as I’m seeing more changes, like a bit more tremoring, noticeable off state.
So at the same time, I think there’s also just a level of accepting that that’s what this is as well. This is going to be the new normal now. Unfortunately, my new normal will continuously change until it’s all over. It’s going to be about adjusting all the time.
What are the most unexpected aspects of Parkinson’s that you encountered?
Probably, my level of anxiety has certainly increased. So that’s the biggest thing I’ve had to adjust to in terms of, it’s just planning my day, whereas your whole life, you just live on a whim and do whatever you need to do, and the basics of life just go on. But now with this, you really have to get a good plan. Even eating has become hard. So I can’t eat certain foods at certain times, whereas beforehand, you just eat whatever you want. That’s probably one of the hardest things I had to deal with, is not eating what I want to eat, eating what I need to eat to fit in medication.
How did the non-motor symptoms affect you?
The major symptoms are something I can deal with. You just do what you need to do to get by in a day. It’s definitely the anxiety and the overthinking that’s been created because of the disease, which I never had before.
I’m not too bad in terms of not socializing with people. For example, I’m going out to drop my daughters to school. Before the medication kicks in, I’ll be worried, okay, I’ve got to do this, got to do that. I’m going to be slow doing this. And then as soon as the medication kicks in for me, I get this instant relief. The anxiety literally almost disappears completely and then reappears 3 hours later when you start feeling the syndromes kick back in. That’s something that’s been hard to accept the up-and-down anxiety every day which I never had before. I used to be sort of happy-go-lucky, I suppose, and pretty easygoing. But now there are definitely patches during the day where you’re like, oh, this is hard work.
How did your family react to your diagnosis and how did you handle discussing it with them?
They are by far the greatest things that happened to me. ‘’Greatest things’’, that’s terrible. The greatest people I’ve ever had in my life. My wife’s been a massive support. She was with me from day one, and she just basically said to me on the day of the diagnosis, look, I’m here, I’ll look after you. It’s all going to be okay. And I just knew it. The girls were pretty young. They’re older now. My oldest daughter’s doing occupational therapy, so she’s learning a bit more about the condition. She’s doing occupational therapy at university, so she’s learning about the condition now. She’s got a bit more of an understanding. My middle daughter, she’s all over it. She wants to do medicine, so she’s learning about the stuff as well. She has an understanding. My youngest is just in her own world, and that’s the best thing about her. But they’re very supportive. What we use a lot here in our home is humor. We laugh about it all the time, we laugh at me trying to pick up cups or slowly trying to do things. You got to laugh because if you don’t laugh, what’s the point? So we use humor a lot to cope with it.
When it initially happened, my wife was working part-time and was looking after our girls who were younger. She had to take on a full-time position because we didn’t know the prognosis of what was going to happen to me. So essentially she just stepped up straight away and she’s been working full time ever since. She’s quite busy. She organizes everything around the house because I can’t organize anything. I’m hopeless. And she’s just amazing. It’s hard because I often feel a bit guilty that she will one day probably have to look after me. And I don’t want that for her. I never want that for her. She says to me, you don’t speak for me, I speak myself. But she’s definitely the best thing of my life and she’s amazing. I don’t know what I’d do without her. I get by, but I’d rather not.
Do you find regular exercise helpful in managing your condition?
Every day I wake up at about 3:30 in the morning because I’m awake anyway. I’ll go downstairs and I’ll start doing weights and exercises before I go to work. Sometimes resistance training will exasperate the slow movement. But I’ve also find mentally, if I don’t get up and do it, I feel even worse. So if I don’t get up and exercise during the morning, I’ll definitely feel really bad for the rest of the day. I always work hard and make sure I’m getting physical each day because that keeps me going for the rest of the day.
I was pretty lucky in terms of, we’ve always been very active in our family anyway. We’ve always exercised, we’ve always played sports and all sorts of different things. So it wasn’t a hard transition. It was probably once I knew that exercise slowed the progression, it was just more of a motivation to continue exercising and exercising more than I was beforehand. In a way, it’s a good thing. It’s providing me with extra motivation to keep going, keep moving. If I don’t do it, if I don’t exercise early in the morning or anytime doing it, I can feel it for the whole day. And it’s probably more of a mental game. I feel so much better mentally once I’ve been active. That’s the most important thing to me. I do work harder. I’m still working full-time, full-time shift work. I’m still running around the girls, all their activities, and everything else because I remain active and I try not to stop. There’s no point in stopping, so I might as well do it while I can.
How has your perspective on life changed since being diagnosed with Parkinson’s disease?
It was one thing I accepted my mortality, that something can go wrong in your body, and obviously it has for me. Whereas beforehand you always think you are bulletproof, nothing’s going to happen. It happens to everyone else. When I got that diagnosis, I remember for about three months thinking, why me? Why me? What did I do wrong? And then I just slowly accepted it and went, well, why not me? However it’s come about, I don’t know how I developed it. I don’t really care either. But it’s definitely like, it makes you appreciate life when you know that it’s quite fragile and at any point, life can get turned off. And I knew that because, as I said, I’ve been a police officer for 20 years and I’ve seen all sorts of things happen to people. So, I did have an idea that life was fragile. When you do get a diagnosis like this and you do realize it, at some point, things are going to get worse. You do realize it. And as I said, at any point, you don’t know what it’s going to be. So you’re going to enjoy every day while you’ve got it.
Have you been able to build a community and connect with others?
I don’t necessarily do it where I am. Because the funny thing is, I’m quite busy in terms of, I still run the girls around, they’re competitive gymnasts, so they train 25 hours a week. I work full-time. I haven’t really connected with anyone in the region I’m living in because I’m right up in the northern part of Australia. Mainly the only reason for that is most people in town are quite a lot older than me that have been diagnosed with it. So there’s not very many people that I can relate to. I can’t go and relate with a 75-year-old person because they’re finished. I’m 43, and 44 now, and I still like younger kids. Not that I have anything against the group. I just can’t relate to it. It’s a totally different scenario. But ever since starting on Instagram, that’s probably been an indirect group. I can see what everyone else is going through. You can see how many people around the globe are in a very similar position to me. And you go, oh, God, it’s not just me and you just watch the reels and watch their posts. It’’s so much easier to connect via social media than it is to go out and actually be in a group, especially in my circumstance, as busy as we are. So it’s so much easier to log on to Instagram for five or ten minutes and see what someone else is doing. I don’t feel isolated because I’m probably more connected now than I ever have been in the whole diagnosis in the last five months since I jumped on Instagram.
What advice do you have for someone recently diagnosed with Parkinson’s?
It is not a death sentence. It is what it is. Some days are bad, some days are great. Everyone’s going to go through something different. Don’t jump on the Internet and look up at what is Parkinson’s, like I did when I first got the diagnosis. It was a big mistake. It was the stupidest thing I ever did. Because I always think to myself, what is going to happen to me? But it hasn’t. You will grow to accept it more as you get along and you take control of your own life. Even I advise myself to think back to when I was first diagnosed, I remember my neurologist saying to me, you come back and see me in twelve months and you’ll be a totally different person and you’ll have a lot of, lot more control over on your thoughts and actions of the disease. He was completely right. Like, if you’ve seen in the first six months from diagnosis, I was an absolute mess. But after that, twelve months later, it is what it is. Just keep going, keep rolling, because as I said, it’s not a dead sentence. It’s not fun, but it’s not the worst thing in the world either. There are a lot of people out there who are a lot worse off than me.
Did you find anything particularly helpful in managing your condition?
It was definitely keto, like eating a keto diet and fasting. My neurologist recommended his friend Doctor Matthew Phillips, who’s a neurologist at Waikato University. He’s done a lot of lectures on ketogenic diet or fasting with Parkinson’s. I must admit when I was doing a full ketogenic diet and full fasting I saw drastic improvement, but I’ve gotten lazy and I like sugary food, so that’s one thing I would say. Give it a go because I definitely saw a massive improvement. I’m going to start going back. I’m going to get into it a lot more in the next few months and go from there. But if anyone’s going to jump on YouTube and look up Doctor Matthew Phillips, he’s brilliant to listen to. He’s very smart. As I said, it worked for me and obviously I think it’s done me good, so I’m going to keep going.
