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Theo I.

Theo I. was diagnosed with Parkinson's disease at the age of 42. Together with Salome G.-I., he has two small children at this time. Due to the slow progression of Parkinson's disease, he does not have to change his usual lifestyle from one day to the next and can still fulfil family duties, such as childcare. At the time of the interview, he has been living with the disease for twenty-three years. Theo I. works as an organisational consultant. Sport and exercise play a central role in his life. In 2018, he started deep brain stimulation therapy. Age at the time of diagnosis: 42 Treatment: Deep brain stimulation Occupation: Office worker Treatment: Deep brain stimulation

VIDEO

Decision-making process

Theo I. tells how deep brain stimulation came about.

Video Interview

TRANSCRIPT

Ten years ago, I attended a lecture at the R [health institution]. That's where they presented it. I remember asking them if I could still kayak after the operation. I didn't get a clear answer. But it might have something to do with the fact that the doctor couldn't imagine what it was exactly. That was the first contact. Then I thought about it for a while and just saved it as an option that would come into question, because at that time I was still relatively well on my way. Then the next point was actually that I was in hospital because of a bowel problem. The intestines are also associated with Parkinson's disease. The neurologist was called in for a collegial consultation. He pointed out to me that he had the impression that I would actually be an ideal candidate for deep brain stimulation. I should think about it. I took note of that. One or two years later, when it became more and more difficult with the medication, I registered for the preliminary examination and then the preliminary examination was done last summer, around July. It was an inpatient hospital stay of two to three days. Various tests were done to find out whether I was suitable. The result was that I was actually an ideal patient because of the Parkinson's situation and also overall because I am relatively young. Then I thought about it and thought, "yes, yes!" For me it was actually clear that I would do the operation. You had a small percentage, which was a small uncertainty, compared to the basic risk that it could also go wrong. There is a basic chance that the whole thing will go totally wrong and that you will have less afterwards than before. I just tuned into it, according to the motto "No risk. No fun." If I don't take the risk, then I can't expect anything to be different. I have to say, I interviewed two more people who had already done deep brain stimulation. One was a person I got to know through my professional environment. Interestingly, she told me that it actually took her half a year [...] before she really found the operation useful, and the other person gave me the impression that she was better from the start or that it was a great relief. These two conflicting statements also raised doubts, yes. What if it doesn't bring what you expect? And now, in my case, I was positively surprised. Since everything seems to have worked out well.

Other experiences by Theo I.

PDI05.jpg

Theo I.

Theo I. was diagnosed with Parkinson's disease at the age of 42. Together with Salome G.-I., he has two small children at this time. Due to the slow progression of Parkinson's disease, he does not have to change his usual lifestyle from one day to the next and can still fulfil family duties, such as childcare. At the time of the interview, he has been living with the disease for twenty-three years. Theo I. works as an organisational consultant. Sport and exercise play a central role in his life. In 2018, he started deep brain stimulation therapy. Age at the time of diagnosis: 42 Treatment: Deep brain stimulation Occupation: Office worker Treatment: Deep brain stimulation

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Theo I.

Slow progression

Theo I. is glad that the disease is progressing only slowly and that he can still do sports.

Symptoms and course of disease

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

Change in the division of tasks

Theo I.'s wife has increased her workload, but he now does the housework, which gives him more exercise.

Living with Parkinson's disease

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

Social contacts

Theo I. increasingly finds social contacts exhausting.

Living with Parkinson's disease

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

Sitting for long periods

Theo I. can't sit at the computer much longer.

Living with Parkinson's disease

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

Emotionality

Theo I. has become more emotional on the one hand, but feels strong emotions less intensely.

Living with Parkinson's disease

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

Decision-making process

Theo I. tells how deep brain stimulation came about.

Treatment with Deep Brain Stimulation

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

Irreversible damage

Theo I. is afraid that something will go wrong during the operation and that he will then be even worse off than before.

Treatment with Deep Brain Stimulation

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

Putting on the steel frame

Theo I. finds the steel frame uncomfortable to sit on.

Treatment with Deep Brain Stimulation

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

New life

Theo I. describes the time immediately after the operation.

Treatment with Deep Brain Stimulation

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

Being able to work again

Theo I. can work again.

Treatment with Deep Brain Stimulation

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

Fatigue

Theo I. feels more tired after deep brain stimulation than before.

Treatment with Deep Brain Stimulation

Parkinson's disease: deep brain stimulation and duodopa pump

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Theo I.

Battery types

Theo I. is glad that he has a non-rechargeable battery that lasts for three years.

Treatment with Deep Brain Stimulation

Parkinson's disease: deep brain stimulation and duodopa pump

View all experiences

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