People can trick their brains. Eleven clinical neuropsychologists want to give the public a glimpse into this with their book How mister Prinsen lost his mind† Each author tells about his or her most special brain patient. ‘We also want to show that special brain abnormalities are sometimes part of life. Everyone learns to deal with this in their own way,’ says Martine van Zandvoort of UMC Utrecht.
Here, three of the authors briefly tell the story of their most remarkable patient. To protect the privacy of the patients, the researchers changed the names and sometimes added elements of patients with the same condition.
The woman who forgot the words of the world
Esther van den Berg, Erasmus MC: ‘The patients that stay with me the most are people in whom it is difficult to see what is going wrong and who are preceded by four or five misdiagnoses. Anja is such a person. She is a smooth 58-year-old woman when she comes into my office. Psychologists first thought she was burned out. When I ask her why she’s in my clinic, she starts talking about something crazy that happened to her recently. ‘Theo asks me to put the container on the street. And I think: container, container? What does he mean?’
‘If that happens once, forgetting a word, you think: that will be fine. But it happens to Anja all the time. She has no real signs of burnout. There is also no sign of memory problems or Alzheimer’s. So she is not forgetful. When I show her pictures of sixty objects, such as a house, a cookie or a pyramid and an igloo, she immediately recognizes them and knows what they are for.
‘But she can only name eight or ten of those sixty pictures. Then a light goes on for me: Anja has semantic dementia. It starts with the temporal lobe and her brain specifically loses the link between things in the world and the meaning we give them as a result. Words disappear first, but later the meanings of other things too. For example, when Anja hears the sound of a guitar behind her, she is shocked. Only when she looks back does she see the guitar. She no longer links the sound of the guitar to the instrument itself.
‘Anja is relieved when she hears the diagnosis, because she knows it’s not her fault, but that her brain is doing something crazy. She is also sad. The disease is progressive and will therefore lose more and more meanings. She won’t be able to place the colors of the world one day.
‘A year later Anja comes by again for a check-up. Her speech has deteriorated sharply. That comes in leaps and bounds. If you don’t understand what sadness is anymore, you can’t talk about it anymore. Her husband Theo takes care of her while he is also grieving, and she is not concerned with that. Yes, that touched me enormously.’
The student for whom the world turned to plastic
Martine van Zandvoort, UMCU: ‘Lizzy is 23 years old and studies at the conservatory. When you see her, or actually when I first saw her, you think: what a frail, hip and modern girl. She does have a crazy problem, she says. She is once watching a movie with her family. For a moment everything around her seems to be made of plastic. The sofa, the walls and the people. Her own hands too. Like she’s in a computer game world. She doesn’t think it’s scary, but she does think it’s weird. At the GP Lizzy says that she also knows that she is very busy and the GP suggests that it might go away on its own.
“But it’s not over. It happens more often. That lasts for a minute or two and then everything is back to normal. That’s why Lizzy goes to the neurologist and eventually to me. It’s really a mystery that makes me think: how? We don’t yet know what’s going on and continue to ask: are all proportions the same during those moments? Can you still see depth? Everything remains the same, she says, except that everything in the world seems to have become mirror-smooth. There is one area of the brain that builds texture in our perception, so I suspect the problem lies there.
‘Then it turns out that Lizzy has epilepsy. Her brain cells right next to the texture area are short-circuited and her texture perception also disappears during those episodes. We propose brain surgery to remove the cells that cause a short circuit. Exciting of course. What you don’t want is to remove the area that provides texture, because then everything will forever seem made of plastic to Lizzy. She surprises us because she herself fears for something completely different: that her musicality will disappear. Is there a brain region for music? One of my fellow neurologists is a musician himself and we use electrodes to test whether we could disrupt the feeling of music in other brain patients. Fortunately not, so the operation continues.
“Lizzy is now married, has children and still sings. She no longer has epilepsy. When I call her to ask permission for her story in our book, she tells me that what impressed her the most was the eating problem. And I think: eating problem, which eating problem? Shortly after the operation she appears to have developed an enormous craving for sweets. As a result, she ended up in the treatment circuit for eating disorders, where she was not at home at all. She eventually flipped a switch and after a while it went away.
“I now think it was a temporary side effect of the surgery that I almost never knew about. A patient pays for every problem at a different counter and that is not always ideal.’
The young mother who lives with a monster
Haike van Stralen, Altrecht GGZ: ‘Janice comes to us with her father because she is aggressive. She quickly freaks out and other people don’t understand why. Her father is starting to get worried, because she recently hit an old man in the supermarket with a shopping cart. He tries to help her with exercises such as counting to ten. Those are normally pretty good tactics, but nothing helps. When I ask her why she sometimes gets angry, I see her getting angry again. And yes, she lashes out at me too. She’s 32 and says there’s ‘a monster inside me’.
‘I know that before her symptoms started she had a brain haemorrhage, a stroke. As with many people, this is sometimes a hidden condition, although you can see from Janice that she has trouble walking. The man in the supermarket had said something about that. Patients must rest in order to recover, but for Janice it is difficult. She’s the type that won’t give up. After the brain haemorrhage she thinks: I will not let this life take me away. As a single mother, she had to fight hard for everything she was able to achieve.
“It’s only when we try to figure out what happens when she does try to rest that we find out that there’s more to it. When she sits still on the couch, she is overcome by all kinds of other emotions. She especially relives traumatic memories of how her sister died when she was little herself. She did not suffer from that before the brain haemorrhage.
‘We know that the cerebral hemorrhage occurred in an area called the cerebellum, the cerebellum. It was always thought to regulate our fine motor skills, but we recently learned that it is also involved in managing emotions. She probably won’t be able to do that anymore, so the traumas surface and she quickly becomes angry. Her mentality as a go-getter is now bothering her. She just wants to keep fighting and not sit still.
“It is clear to us that Janice will have a hard time recovering if she can’t rest. We therefore decide to treat her trauma. She doesn’t really want to look back, because it’s behind her. The treatment is also really tough. We use EMDR, a technique to recall traumatic memories while doing other tasks at the same time, such as doing maths. Because all those tasks tax the working memory, which can only do one thing at a time, the emotions surrounding the traumatic memory fade. The memory is saved with each session, but less and less intense. It is especially hard for Janice that she was unable to prevent her sister from dying. Her sister wanted to keep playing and she didn’t, so she went home. Then it happened.
‘What I find most special about Janice is how much resilience she has. She can now watch a movie at home with her son. She takes more rest. Of course she still sometimes falls out a bit faster, that’s part of her now. She will never be the same again. She sometimes jokes: “I’m going to be Janice 2.0.”