38-39 - Patient file: Parkinson’s Disease

Can you describe the events that led to your diagnosis with Parkinson’s disease?
It started about ten years ago. It wasn’t me who noticed it to start with, it was my wife, Natalie. It started with a stiff neck, and then after a year or so my movement started slowing down, in what turned out to be bradykinesia.

The diagnosis process was difficult, for several reasons. I thought that I was too young to have anything like Parkinson’s. The first doctor I saw said: “You’re absolutely fine, there’s nothing wrong with you.”

After another year passed and I started feeling more symptoms: losing hand strength and dexterity, feeling off, like a hangover, and just generally not feeling top form.

I then went to a neurologist and without doing any symptom checking he almost immediately said “You’re in the right place”. He just looked at me and said, “Your face is unequal, your movements are stiff, and you’re faking your right-hand side. You have Parkinson’s.” It scared the hell out of me to be honest.

How did you come to terms with the diagnosis?
You go through the phases. You go through the beginning week, where you start worrying about it. You think you’re going to die, you’re concerned about having no life. Then you start realising it’s a very slow degenerative disease, and luckily mine is relatively slow, it’s not that fast. You start living your life a little bit more normally than you would at the beginning.

Initially I got lethargic, I stayed in bed and thought, what’s the point? You don’t want to move, you just want to lie there and let your body sink into the mattress. You can’t let yourself fall in to that pattern. I had to tell myself to get up and do things, I still do.

In the beginning, I went on every single fad diet that I read about for Parkinson’s. I’ve gone off that now. I’ve got to the point where I’m eating and drinking pretty much normally. I’m living my life as far as I can. I’ve decided there will be no excuses at all. By the time I’m done I’m literally going to be the happiest guy on earth. I don’t think I’ll leave anything on the table. That’s the way I’m looking at myself now.

What are the key symptoms you experience?
For me, my biggest problem is my walking. I now walk with a stick, just because it gives me confidence but I probably will fall, not just trip and stutter, properly fall over, on average once a day.

My head moves a lot, and then there’s the pain. Obviously, everyone has pain in Parkinson’s and tiredness, lethargy and heaviness.

Ultimately, I’m one of the lucky ones. I don’t have the shakes. I’ve never had the shakes. There’s nothing that I’ve got that I can’t cope with. I’d love to sleep better. The sleeping thing sucks. I’m averaging about two and a half hours a night. It’s not great, but I’ve heard of a lot of people with worse.

What have you been told about your prognosis?
I am quite a lucky person as mine is progressing quite slowly, I can still play golf, ride my bike and live my life.

How does having Parkinson’s disease affect your day-to-day life?
I’m still relatively fit and healthy. I’m capable of doing a lot; I play golf, I bike, I box, but some things I’m just incapable of doing. It seems to be a balancing act in life right now for me. If I go too much, I crash, and when I crash, I literally can’t move. That’s self-inflicted. That’s just pushing it and getting too enthusiastic and doing too much. That’s the off button, that stops you and says, ‘right, you’ve got to give it some time now, rest, get yourself back together, get yourself happy, and then move on’.

What would you say is the greatest challenge of living with this condition?
There are times when you start thinking heavy and darkness descends, it feels like there are blackbirds that are parking themselves on your soul. The world feels oppressive and you can feel symptoms coming on. These periods can be very tough to get through, but you always do.

Have you ever taken part in any clinical trials, if not – would you consider it?
I haven’t ever participated in clinical trials, and to be honest it’s not something I have ever thought about. If an opportunity arises at the right time I would definitely consider it.

What inspired you to participate in the Putting Parkinson’s In The Picture campaign?
Being diagnosed with Parkinson’s at a relatively young age was a complete shock to me and my family. And it completely changed our life, our picture of it was older people who couldn’t stop shaking but the reality is completely different. It can affect you when you are younger and there are a range of symptoms both physical and mental. That’s one of the reasons I wanted to be involved: I wanted to show what it’s really like to live with Parkinson’s in a way that is really easy for anybody to connect with and relate to. I wanted to show that it can affect younger people and it’s not quite what everybody thinks.

Patient file: Parkinson’sDisease

Patient file: Parkinson’s
Disease