What if, as a Parkinson’s patient, you hear a success story about an operationthat can significantly reduce your symptoms, but that doesn’t seem to workthat way for you? It happened to Ger Geurts, who contracted the disease afteryears of working in roses.
Like more and more people, Parkinson’s patient Ger Geurts underwent the so-called Deep Brain Stimulation operation. A brain operation against thecomplaints he experienced due to Parkinson’s disease. Success stories receiveda lot of attention, including those of singer and presenter Ernst Daniël Smid.The operation turned out to work very well for him. But unfortunately itturned out differently for Ger, just like with other people. He tells hisstory.
Fail
“I can’t get any worse, I can only win,” says Parkinson’s patient Ger Geurtsin the podcast Do I get Parkinson’s? from EenVandaag reporter Laura Korsbefore undergoing surgery. He gives his life an unsatisfactory at that point.Too often he has to deal with the off-moments characteristic of PwPs. Thoseare times when his body feels restless and annoying and he can’t concentrateon normal daily activities.
Medication helps to suppress those moments, but if the disease worsens, thereis a moment when another increase in the dose is no longer possible. Thedamage to other organs would then become too great and there is a risk ofanother nasty side effect: hypermobility. In addition, the body makes grossuncontrollable movements with the arms and legs. “That looks very strange,”says Geurts. The operation can then offer solace.
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What is Deep Brain Stimulation Surgery?
Electrodes are placed in the brain through two holes drilled in the skull.They are in contact with a box via subcutaneous cables behind the ears. Thatbox is also under the skin, just below the collarbone. From that box,electrical currents are sent to the brain, which reduces Parkinson’s symptoms.
‘Can do everything again’
Patient experiences vary widely. For singer and presenter Ernst Daniël Smid,the result of the brain operation was extremely positive. In the talk show OP1he said that he could do everything again, after he could no longer even dresshimself. Now he can sing, write and type again.
But Geurts’ experience is less positive, as the podcast shows. The more thansufficient that he hoped to be able to give his life after the operation hasnot materialized. “You have a DBS operation applied and then you think: afterthat it will go like a train again. But then it is a bit disappointing indeed.
Positive stories such as those of Smid create great expectations among otherpatients, brands and practitioners in practice. The nurse who assists Geurtsmust always temper the expectations of people who hope for an equally bigchange. And that is a tedious task.
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Effects are not so great for everyone
After the interview with the singer, Parkinson’s expert Bas Bloem alsoreceives many more requests from people who also want the DBS operation andexpect a lot from it. “Of course you notice that, if such a celebrity,especially Ernst Daniël Smid, is larger than life , that shouts on TV. ” Healso has to temper expectations, because the effects are not so great foreveryone.
“We are now talking about DBS, but it has also been the case with cannabis.After a positive story about it on TV, I received all sorts of questions aboutit in my treatment room,” says Bloem. “In a broader sense you can say; peopleare desperate and cling to everything. I even see people who take out amortgage on their house because a Chinese miracle doctor offers stem cells,while there is zero point zero scientific evidence for this.”
Depressed by disappointing results
Psychiatrist Odile van den Heuvel recognizes the story. “Two years ago therewas also a TV broadcast about this operation, in which only a positive storywas told. People then think it is a panacea.” But she then sees theconsequences in the treatment room.
Some people become seriously depressed because the results are disappointing.”People who respond well to DBS surgery are put back in time 10 years, and cando a lot again. For others, the gain is more subtle. The variation in effectis large with almost every treatment in medicine.” According to Van denHeuvel, neurologists should therefore paint a nuanced picture of the expectedeffects.
‘The hope is still there’
Geurts remains hopeful that his situation will improve after all. “They giveit 3 to 12 months for all the settings to be optimal and every person isdifferent.” Geurts would love to play golf again, but whether that will workis the question. The operation has not brought him what he hoped so far. “Notyet, but it can still come. The hope is still there,” he says.
He would like his life to be a seven. “But I now keep it at a small 6.5. Afterthe operation you think: they turn on that box, and together with themedication, you go like a train again. But that is not the case.”