I'm 36 With Parkinson's and I Just Became a Dad

This article originally appeared on VICE Netherlands.

When I think of Parkinson's, I picture shivering elderly people. I thought your hands had to be old and wrinkled before they could start shaking. Turns out it’s not the case. Although the incurable brain disorder is mainly diagnosed in people aged 50 to 60, people in their 20s and 30s can be diagnosed with Young-Onset Parkinson's Disease (YOPD).

The number of Parkinson’s patients has been on the rise, recently, partly because people are living longer than ever – but that’s not the whole story. Research by the European Food Safety Authority (EFSA) suggests that pesticides used in agriculture may also play a role by causing damage to our brains that could be linked to Parkinson's. People who drink a lot of milk, for instance, are more likely to contract the disease, as cows ingest large amounts of pesticides.

As I read these findings, I can’t help but think about all the cottage cheese I’ve been eating in my rather unsuccessful attempts to gain muscle. But according to Dr. Bart Post, neurologist and associate professor at Radboud University Medical Centre, things aren’t so straightforward. “People who are diagnosed with Parkinson's at a young age often already have a predisposition to it,” he says. “We don't quite know yet how the disease develops, although brain injury and pesticides do seem to increase the risks.”

Parkinson's is a progressive disease, which means symptoms gradually get worse. “Tremors are perhaps the most known symptom, but patients also suffer from sluggishness, constipation and weakness,” Post explains. “Your health becomes brittle, your body fragile and, eventually, a fall down the stairs or pneumonia can become fatal. If you’re diagnosed with the disease around the age of 40, your physical deterioration will be slower than if you’re older. Still, there’s a good chance you won’t live as long as someone who doesn’t have Parkinson's."

Robin Zwiers, 36, is a young Parkinson's patient. He talked to me, over Zoom from his living room, about how he’s been feeling better recently, after undergoing a treatment called Deep Brain Stimulation (DBS). During the operation, electrodes were placed in his brain to help reduce the tremors for up to ten years. “I was nervous about the surgery. Although the chances of serious side effects are small, they still tinker with your brain,” he says. “I still shiver a bit, but I’m able to do so much more, like change nappies and Zoom meetings! I feel 90 percent normal.”

It all started in 2014, when Zwiers had just graduated from uni. Complaining of wrist pain, he was referred to a physiotherapist and then a neurologist, who thought he had a non-congenital brain injury. “They probably thought I was too young to have Parkinson's,” he says. "In hindsight, it's a real shame.”

If he’d had the right diagnosis on time, he could’ve been treated earlier. He’s not bitter, though. “When a man in his late 20s complains about muscle pain, Parkinson's is simply the last thing on your mind as a doctor,” he says. To Zwiers, this just shows how little we know about it. “On TV, you always see elderly people with Parkinson’s. If doctors become more aware of people like me, they can diagnose patients more quickly."

Slowly but surely, Zwiers's symptoms got worse. His hands started shaking and his body made his life miserable. He had to stop working because he could no longer hold a computer mouse, cutlery would constantly slip out of his hands, and his face was always covered in tomato sauce when he had a slice of pizza . 

Gradually, Zwiers began to realise his diagnosis didn’t match his symptoms, but was afraid of going back to the doctor to hear what was really going on. “I was running away from what felt like a death sentence,” he says. “I thought, ‘As long as I’m not diagnosed, I’m not sick.’ That was stupid, of course.”

By 2018, the shaking had became too severe to be ignored. “When the doctor uttered the words, ‘You have Parkinson's,’ I fainted,” he says. “I thought I could no longer have children, that I would have to spend my whole life in a wheelchair. I thought I was going to die.”

Doctors prescribed him 17 different pills, which helped a bit with the tremors. Zwiers could work at his computer again, but chores remained difficult. He hired a cleaner to help at home and also quit korfball, a ball game he played for years.

“I struggled with that for a long time as it was my hobby,” he says. “During this period, I applied for jobs – without success. Even though I could basically do computer work, employers dropped out when I told them about my diagnosis. They found me scary or assumed I couldn't do anything. I got frustrated and thought: ‘I’m more than my illness, why can't you see that?’ So I ended up going freelance.”

Zwiers’s personal life was sadly affected by the diagnosis, too. The tremors get worse if he gets excited or emotional, which has been a huge challenge for his love life. Sex became slower, and even giving his partner a hug started taking a lot of effort.

“It made me insecure sometimes,” he says. “I wanted her to have sex with me, not a patient. It probably didn’t always feel sexy for her to be in bed with someone shivering in his boxers,” he laughs. “Luckily, Parkinson's affects what I can do, but not who I am. I believe she loves me mainly for the latter.”

In the meantime, Zwiers has become a father. This was the main reason that motivated him to try the deep brain stimulation treatment. “I really wanted a child, always have,” he says. “I wanted to be able to play with him and cuddle him. I wanted to be an active dad, not just his conceiver. Thanks to those electrodes, my little son has a father, at least for the first part of his life.”

That being said, Zwiers knows DBS is not the solution. His symptoms will eventually return and get worse. “I know what awaits me and that scares me at times,” he says. “Just because I feel better, doesn’t mean I’m no longer sick. For now, I try not to think about it. There's no point worrying about things that can only scare you.”