Max Gruber has Parkinson’s. Telephoning, PC work, eating and dressing independently – impossible. Medicines didn’t help much, only the operation brought the quality of life back. How Max experienced this complex procedure and how he would like to encourage other people affected by Parkinson’s.
Just a week ago, Max Gruber (name changed) was suffering severely from the symptoms of his Parkinson’s disease. Left arm and foot were shaking badly. In addition, the stiffness in the neck, hands and feet, the insecurity with every movement. It was no longer possible to dress independently, not to eat normally, to make phone calls. Not writing on the cell phone and working on the PC, which was particularly bad for the former banker. His beloved hobbies of photography and filming as well as cultivating the extensive coin collection also became impossible. This also applied to his manual skills, the repairing that used to be so natural, for example when the faucet was broken. His quality of life was in the basement.
Today all these complaints are gone. “As if a magic hand had wiped everything away,” describes Max. The “magic hand” is a so-called brain pacemaker. This invasive therapy is called deep brain stimulation (DBS) or deep brain stimulation (DBS). Electrodes are permanently placed in specific, deep regions of the brain with millimeter precision. A pulse generator, the pacemaker, sends finely adjusted electrical signals via these electrodes. These impulses can bring the coordination of movements, which is disturbed in Parkinson’s disease, back into balance. This does not mean a cure, but a strong alleviation of the symptoms – as Max Gruber is now able to experience.
The patient describes the complex procedure itself very pragmatically. Before the operation, he was asked twice if he would like to be woken up during the procedure so that the probes could be inserted in exactly the right place, “of course, definitely,” he said yes. He was then given general anesthesia and doctors fixed his head with an iron crown. It is screwed to the skull and prevents even the slightest movement.
The fixation is necessary so that the surgeon and neurologist can work with pinpoint accuracy. The skull was drilled open on the right and left via two small skin incisions. The doctors inserted two test probes through these holes, which were about 0.5 millimeters in size. The aim was certain coordinate points under MRI. Now Max has been woken up so that the probes can be positioned precisely in the right places.
This works best when the patient is alert. Then the shaking starts. In this stressful situation, however, most of them unconsciously concentrate on the tremor, which unfortunately somewhat suppresses the tremor. However, if the patient is distracted, the tremor sets in fully. This allows the doctor to insert the probes appropriately and the movement disorder decreases when the electrodes are correctly positioned.
In order to be distracted, Max should count backwards from 100 in steps of seven: 100, 93, 86, 79… Because he thinks mathematically very quickly and can do such exercises in his sleep, so to speak, the distraction didn’t work. Therefore, he should spell long words backwards. With this trick, the shaking started.
The test probes were tentatively placed. After finding the right spots, the fine wires were pulled. That hurt extremely. “But you shouldn’t be so sensitive – if someone helps you, then you have to be grateful,” says Max Gruber. The anesthesiologist also numbed the area around the drilling sites locally. This allowed the permanent stimulation electrodes to be used.
Now the doctors implanted the actual pulse generator under the collarbone. The battery-powered brain pacemaker is a small box about 5 centimeters in size. To connect it to the electrodes, thin cables were laid under the skin from the right to the left cranial opening and from there together to the pulse generator.
The entire procedure took around eight hours and when Max woke up afterwards he immediately felt better, his Parkinson’s symptoms had disappeared. He didn’t even have a headache. The next day he received a small hand-held transmitter that is connected to the pacemaker like a remote control. It can be used to regulate the current. By the way, there is no need to change the battery and cut open the skin under the collarbone every few years: the device contains rechargeable batteries that can be charged inductively. The charger is only placed on the pacemaker from the outside. “That’s very positive for me, because every cut open to change the battery is another source of infection – and besides, I’m not getting any younger,” he emphasizes.
The success of this operation is overwhelming for him, “It’s like a new life, I can’t even remember the tremors before, it’s all gone,” he says happily. But in order to decide on the complex procedure, it also undeniably takes a lot of courage. Fix the head for hours, drill out the skull, place electrodes in deep brain areas while fully conscious. It is understandable that many Parkinson’s patients shy away from this idea.
How did Max manage to decide to take this step? “In order to understand this, you have to be realistic about what it means for the person affected to have Parkinson’s,” explains Max Gruber and reports on his illness – from the beginning to the new life with the brain pacemaker.
Even in his early 50s, Max Gruber’s hand sometimes trembled slightly, he didn’t take it seriously. During a series of examinations at his place of work, the doctor advised him to have the tremors checked. But the visit to the neurologist did not produce any real results. That was 16 years ago.
Ten years later, the slight tremor remained, but didn’t bother him much, all of a sudden Max could no longer lift his arm – after he had done physical work. He had helped his son build a house at the weekend. The mysterious paralysis disappeared again. But slowly the trembling increased, and there was also stiffness, the motor symptoms typical of Parkinson’s. “Nevertheless, Parkinson’s cannot be clearly determined, there are countless symptoms and every Parkinson’s disease is different,” he clarifies. However, it is true for all of them that they severely limit the quality of life and the condition even worsens over the years.
Max tried to get help, went to an osteopath, to a non-medical practitioner, but the symptoms only got worse. A “removal therapy” then brought him to the end of his strength. The already slim man lost a lot of weight, the tremors and stiffness were massive.
His son, a physiotherapist, then had the right tip: Because one of his patients had Parkinson’s with symptoms very similar to Max’s, he advised the father to make an appointment with the neurologist treating his patient. He did a DaTSCAN with Max. This is a head scintigraphy that provides images of the functionality of special nerve connections, i.e. dopamine transporters, in the deep brain areas.
In Parkinson’s disease, the nerve cells in the brain that produce dopamine die off. Dopamine is a dampening messenger substance that, among other things, controls the work of the muscles and enables movements to be carried out in a controlled manner. Dopamine deficiency therefore not only leads to uncontrolled movements, but also to hyperactivity in certain areas of the brain. The shaking paralysis typical of Parkinson’s develops. However, it is still unclear why these cells die and whether other factors are also involved in the development of Parkinson’s disease. Not everything is known about the causes of Parkinson’s, this chronically progressive, neurodegenerative disease – although more than 300,000 people in Germany are affected.
Because the scintigraphy images confirmed the suspicion of Parkinson’s disease, the doctor sent Max to another neurologist at a clinic. Further tests and investigations followed. And it was only there, 16 years after the first early symptoms, that the diagnosis was made: Parkinson’s. That was a shock for Max Gruber, but at least he now knew which illness it was, which restricted his life so severely.
Max was on Parkinson’s drugs that increase dopamine levels, as well as others, as part of a study. “However, the side effects were very strong,” he reports. The trembling subsided a little, but he got so tired that he had to lie down. After that he always had extreme sweats, diarrhea and after two hours the medication was no longer effective. The suffering became immense.
His neurologist spoke to him about the possibility of a brain pacemaker because this technique can significantly improve motor symptoms. He recommended Jens Volkmann to him. The professor is the head of the neurology department at the University Hospital in Würzburg. After a detailed consultation, the expert carried out the appropriate preliminary examinations of the brain and after a few months of waiting, Max was then operated on by the neurosurgical team in Würzburg. A prerequisite for deep brain stimulation is an interdisciplinary team of neurologists, neurosurgeons, neuropsychologists, speech therapists, nurses in postoperative rehabilitation and others.
And precisely because the operation was so successful and, thanks to the brain pacemaker, his life is worth living again, Max Gruber would like to pass this on: “I want to encourage other affected people not to be afraid of this operation and to make the great gift of this therapy clear. And please don’t wait too long and go to the neurologist early, he still recommends. The treatment should therefore start as soon as possible. Because the longer Parkinson’s symptoms persist, the more the patient degrades.
What’s next for Max Gruber? He’s still taking some dopamine, but not even half what it used to be, and the side effects are minimal. Tablets plus stimulation from the electrodes tell the brain: dopamine levels are okay, everything is under control and in balance.
Nothing stands in the way of hobbies. And he can also use his manual skills again, apart from eating normally, dressing, making phone calls…
