More than two years ago, Jeroen Mulder from Emmen received the diagnosis that no one hoped to receive: Parkinson’s. The former journalist and IT professional is living life to the full, but from that moment on everything changes. Now he is releasing his first novel about living with Parkinson’s.
That book had to be created, says Mulder in the Radio Drenthe program Cassata. “The moment I was diagnosed, I knew: ‘I want to talk about this. I want to be transparent about what this does to someone who is still in the middle of working life. Only I didn’t want to write yet another book about how someone deals with an illness. There are plenty of those books, including some very good ones. I really wanted to make something different.”
In the book The Paintbrush of Parkinson, an artist with Parkinson’s searches for the missing canvas that he once painted of his great love Eva. “There are a lot of autobiographical elements, mixed with fiction,” says Mulder. That great love is actually Mulder’s partner Judith, and painting is also one of his hobbies.
During one of his many walks, Mulder discovers that he can no longer go any further. “I called Judith and said: ‘Pick me up, those legs don’t want to go anymore’,” Mulder recalls. When the complaints only get worse, he has himself examined. The diagnosis is rock solid: “‘You have Parkinson’s.’ It’s just three words, and you can throw everything in the trash.”
Two years later, life bears little resemblance to the existence he knew until then. “A lot of things fell away,” he explains of his changing life. “My work, among other things. I got tired quickly and had no concentration. I couldn’t cope with that anymore.”
He now walks with a crutch. “That’s not even so much for support. But the rhythm tap that I hear keeps me moving. Otherwise I end up in freezing, the feeling that your feet are stuck to the ground.”
His physical condition varies from day to day. There are good days, but also physically bad days. That depends on how he wakes up and whether his medication – at least thirty pills a day – is working.
“I often wake up in pain. Then I literally drop out of bed, because then I am very stiff. Once I have had the first medication and it works, then the day starts to look like something. But at the same time, the medication does not work. Then the agenda can be canceled.”
Writing the book kept him busy, he explains. While writing was sometimes impossible due to the illness, it still helped him get through the days. “You can sit in a chair and wait for it to go away. But this will not go away. You know that this is progressive, so that you are going backwards more and more.”
His book has actually been on the market since this week. “I have written more books, but professionally. This was my first novel. I found and find it very exciting. But I am also very proud of it.”
