My name is Caroline. I’m 36 years old and I’ve had Parkinson’s Disease, or the diagnosis of Parkinson’s Disease, since I was about 30 or 31.
I’m a teacher. At the moment I work as a support teacher. Normally, anyway. But, I have been at home since November because I had deep brain stimulation surgery, which did not work as I developed an infection and all the cabling and batteries had to be removed. I only have the deep brain electrode in my brain at this point.
The idea is that I will return to work as a support teacher at the beginning of September. And then sometime later, around January I think, I hope, the same operation will be performed again. Hopefully, the electrodes won’t get infected in the meantime as that would complicate things even more!
Could you provide some more autobiographical details: Who are you? (children, hobbies, experiences etc.)
I am married. I have three stepsons and a dog, called Max, a cat called Mini and some fish. I have one big hobby: running. But in the last three years I’ve run less and less, so I’ve gained weight. And because of that I actually run less. I have tried to start running again to break the vicious cycle and I hope to participate again in ‘Run for Parkinson’ and other events someday. My other hobbies are writing – including a blog about deep brain stimulation surgery that I started under pseudonym Cornelia Baayden – and music. I love to sing and play the piano. But that also gets harder and harder as the disease progresses, of course.
What were the early symptoms of the disease that led you to visit a doctor?
The first symptoms of my illness were a lot of muscle pain and cramps. After walking, my neck and shoulders had cramps. Initially, people thought it was calcification of the joints. But in the end, it turned out to be Parkinson’s Disease.
When and how were you told you had Parkinson’s?
The doctor said: “We’ll test you for one of the worst things first’. And it came back positive. The way I was told was very matter-of-fact. The doctor showed me the the images they had taken and gave me the diagnosis. It was almost as if he thought it was normal to tell someone such devastating news. Of course, for him it is! He must do so on a daily or weekly basis but for me it was a shock. I have remained his patient and actually it turns out that he is a very understanding and friendly doctor, but the initial diagnosis lacked warmth and empathy.
What was your intial reaction? What did you fear most? How did you come to terms with the news (if you have)?
My reaction in the beginning was: “My life is over – it’s done. Over and out.” I was young. I still am. And I had no experience of Parkinson’s myself, so I started looking for people who knew about it. It’s still very difficult for me. The thing is, if everything is stable, I can cope. But lately, especially with the Deep Brain Stimulation surgery, and constant changes in my medication, I’m having a harder time. I find it difficult that I deteriorate so fast, that I block, that I can’t do things that I like to do anymore. And that’s why I go to a psychologist.
How did family and friends react?
Also with disbelief, of course. They couldn’t believe it. My family didn’t know anything about the disease either. Some friends were like: “It’s not that bad. You’re not dying.” In the end, they’re no longer friends of mine.
What’s one of your major Parkinson’s symptoms? What impact does it have on me?
Well, I can refer you to my blog for that. I’ve written a lot of articles about it. As well as how I would explain it to someone who doesn’t know the disease. I always say: Parkinson’s is a disorder that will ruin your whole life. For me it’s mainly the muscle tension, the cramps, the spasms, that bother me. With the Deep Brain Stimulation, I had no more pain. I could sit still. I could sit up again without pain.
What do you miss the most now that you have Parkinson’s and why? What impact does this have on you?
Well – at the moment, my work. I’d really like to get back to my colleagues. I’d really like to see my students. But I just can’t at the moment. I really hope it works out in September, otherwise it’ll be a big disappointment. And, of course, I miss running.
What does your future look like?
Well – my nephew is my focus. And now I’ve also heard that my sister is pregnant, and that I’m going to become an aunt again. So that’s two nephews. They push me forward. I want to keep going for them. I want to be there for them. Because they deserve an aunt that’s there for them.
What, if anything, is something positive that Parkinson’s has taught/given/shown you?
Yes. Self-awareness. Awareness, full stop. And, creativity, such as my blog. I didn’t used to be creative at all. I knew what I wanted to say, but I didn’t get around to writing it down. But now I do. Also drawing. Oddly, when my hands cooperate, I draw much better than before.
What advice would you give someone who’s just been diagnosed with Parkinson’s?
Unfortunately, I just had to do that as my best friend has also been told she has Parkinson’s. And I have to say, it’s very, very difficult for me to give advice. I just say stay calm and inform yourself. Get your husband, or wife, to educate themselves. Ask your family, everybody, to get informed. Find out about the disease to avoid misunderstandings.
What motto do you try to live by?
“I’ve got Parkinson’s but Parkinson’s hasn’t got me.” Parkinson’s doesn’t define me. I’m still trying to figure out how far I’m able to go.
Carolien’s blog: https://mijndraak.wixsite.com/mijndraak