The wire to life
Not with me, Ursula Morgenstern thought. A brain pacemaker - never. The idea that doctors would push their wires deep into the brain was a horror for a long time. Electrodes that influence what happens - right where your thoughts are, your memories, your identity. A small machine that constantly works in her, in her soul. Would she end up making her a machine herself?
But what remains is the fear.
Ursula Morgenstern has Parkinson's disease, shaking palsy. She has known it for 15 years. At that time, she was 51 and on the job a lot, managing a nationwide service for healthcare companies in the healthcare sector. It had always been that way: her husband had taken care of the two children, she had gone to work. Into this world full of activity the shock broke: an incurable, gradually progressing illness. Ursula Morgenstern decided to fight. "I do not want pity from you," she told her colleagues, and she stayed in the company for the next seven years. At the beginning it worked too. She got L-dopa. This substance replaces the nerve messenger dopamine, which makes the brain Parkinson's sick less and less. But after a few years, Ursula Morgenstern's effect began to fluctuate extremely, as did other people affected. Sometimes a tablet still solves, but sometimes does not, the stiffening of the musculature typical of Parkinson's disease. And sometimes her body became overpowering without her being able to control it. Parkinson is a switch between On and Off. In the good phases, Ursula Morgenstern can move and speak like other people. In the off, on the other hand, you freeze your body, stick it tight, keep it trapped. A nightmare: Parkinson's patients sit at bus stops and suddenly do not come up. Or they stand and stand and do not get any further. Falling over, simply because their power fails. At some point, maybe only after hours, mobility returns. "But what remains is the fear," says Ursula Morgenstern. Her husband died a few years ago, since then she lives alone. In her apartment everything must be ready: in the morning the wheelchair by the bed, the tablets within reach. Otherwise she will panic. When Ursula Morgenstern is just able to move, she quickly makes the kitchen or the laundry and prepares everything for the next immobility. But over time, it falls more often and more violent off. For hours she lies there until her muscles finally relax again. The next day she has sore muscles, can hardly stand up. She gives her car to her daughter, but from time to time she only dares to come out of the apartment.
Then she makes the decision: for the wires in the head, the "deep brain stimulation" that the doctors have been offering her for some time. "I do not want to be a nursing case," said the now 66-year-old determined. It's only 48 hours to the surgery. Then one of those pacemakers she's planted in the brain she was so afraid of until recently. Ten years ago, she saw the first "guinea pigs," as she calls it. People who could not talk anymore after the procedure, who were constantly stumbling, with the electrodes sticking out of their heads. Nevertheless, she has been in the last six months to this intervention. Because technology and experience have matured in the meantime. Because she has absolute confidence in her neurologist, whom she has known for a long time. And because it is simply their last chance to live self-determined and independent. Without this little machine she would not be able to cope alone for much longer, she knows that.
"I still do not think about the operation," she says now, two days earlier, wondering about herself. Her thoughts circle around the time, something else she does not allow. She thinks of the co-sufferer she met two weeks ago. For eight years he has been wearing a brain pacemaker. She can not believe how well he is doing. When Professor Jan Vesper from the Department of Neurosurgery at the University of Dusseldorf once again talks to her about the planned operation, she still has to cry. For a brief moment she attacks the fear that she does not otherwise allow.
Only today counts: Ursula Morgenstern, 66, enjoys her regained independence. Before surgery, she would not have dared to go outside alone.
Two days later, her head, shaved bald, is stuck in a monstrous apparatus, the stereotactic stereotactic ring, which will enable physicians to pinpoint navigation in their brains. A device whose appearance seems to fit more in the medieval seafaring than in the medicine of the 21st century.
Ursula Morgenstern is in the operating room and waiting.The medical team meets two rooms further, taking pictures of her patient's head on the screen in front of her, and advising on the path the electrodes should take. Their target is deep in the brain, and they must not hurt blood vessels or other sensitive areas. One and a half hours later, the bone drill buzzes through the skullcap. A horrible sound. Ursula Morgenstern will later describe the minutes of drilling as one of the most unpleasant parts of the operation. For she not only hears the roar, she also feels it in her head. If a brain pacemaker is used, the patients are only locally anesthetized. They have no pain, but are mentally fully there. Also for the doctors an extraordinary situation. More respect, urges Neurosurgeon Vesper, as the murmuring conversations of his colleagues are once louder. Nevertheless, it is he who makes his patient's breathing and pulse leap up, which terrifies her. "Do not!", He tells his assistant, who apparently does not care for the head wound as the boss would like. After that, the lines flicker on the monitors for moments of hectic. With every operation, we deliver, give our lives to the doctors. Unlimited trust is needed. But if the cecum is removed, it forgets or displaces more easily. Here it is noticeable: The grip on the brain touches much more than just an organ.
Pacemaker in the brain: The neurons talk
"If a patient is not fully prepared for what is happening here, the procedure can literally traumatize him," Dr. Martin Südmeyer, the neurologist who holds Ursula Morgenstern's hand during Operation. In fact it resembles a horror film, which she is living through: lying helplessly, feeling, hearing, seeing people in frocks and with mouthguards sink into their own bodies.
Suddenly a crackle and rattle filled the room. The electrodes record the activity of the nerve cells they are passing. "Now listen to how your neurons are talking," explains Jan Vesper. The sounds change, the experts hear that they are close to the target.
Now the cooperation of the patient is required. That's why she is conscious. The doctors send weak surges to their brains and watch the reactions that trigger them. An important phase. Because the electrodes must be placed so that their irritation alleviates Parkinson's symptoms, but does not interfere with other bodily functions. "Monday, Tuesday, Wednesday," Ms. Morgenstern exclaims loudly. Sometimes their language is clear, sometimes a little mumbling. Then the doctors change the position of the wires in their heads until they understand. Martin Südmeyer simultaneously moves her hand and assesses stiffness and tremor, the two typical Parkinson's symptoms. After 20 minutes, the optimal position is found, the test wires are removed, and only now comes the actual pacemaker electrode used. The doctors close the hole in the skull again, but Ursula Morgenstern is not yet redeemed.
The whole procedure starts from the beginning, this time in the left hemisphere. Her head has been fixed for four hours, she lies quietly on her back. The pills she took until the operation no longer work, and Parkinson's slowly returns. Ursula Morgenstern is increasingly stiffening, she is in pain. Her feet twist in the cramp until they lift off the operating table.
It is a new life.
But the doctors are now allowed to give her no medication. Then the reactions to the test surges could not be clearly determined. Hustle and bustle is spreading in the operating theater. "Doctor, it hurts so much," stammered Ursula Morgenstern, and her moans get louder. Then she is finally redeemed. Immediately after the second test irritation, she receives a sedative. Completely exhausted, she falls asleep immediately and regains consciousness only hours later.
Once again she has to go to surgery. The next day, the ends of the electrodes are laid over their right breast and connected to the actual pacemaker. Then the equipment is turned on. "Electricity was my first sensation," says Ursula Morgenstern later and jerks briefly at the thought of it. "The doctors had to turn it off immediately." Only gradually does she get used to it.
She is getting better and better. Two weeks have passed since the procedure. "I'll buy a car again," she says euphorically, and then quickly adds, "If it stays that way." She reports compliments. She had calmed down, speak more clearly. And laugh about it because she does not even notice it. She has not arrived yet in the new situation. She is still in rehab and not in her everyday life, the Parkinson's disease until the operation completely determined.
Only at home in her apartment in Dusseldorf energy and confidence break out completely. Confident she sets off her wig, two inches are her hair grown again.
"It's a new life," she beams. The car is ordered, she can hardly wait to drive to her daughters. And in the next vacation, she wants to do something for the first time alone with her granddaughter.Before, she never dared to do that. Not even as a baby in her arms she has taken the meanwhile seven-year-old, for fear of dropping them. But the off-phases have completely disappeared after the procedure. Ursula Morgenstern's eyes light up, she feels well, healed. And yet he has to force himself to think that this is not the case. Even with brain pacemaker progresses the disease continues. Although slower, but eventually the Parkinson will catch up with them again. Doctors do not predict when that will be. "The next four or five years will be good," says Ursula Morgenstern firmly. "I still do not think so." Even the experiences of the past operation no longer matter. She lives in the present, nothing else matters. And yet it happens that she wakes up in the morning and anxiously asks, "Where is the rollator? Where the wheelchair? Can I still make it to the bathroom?" Then it takes a moment until you remember everything: "Go on, you just have to get up."
Brain stimulation slows down Parkinson's
In Germany, about 300 000 people are affected by Parkinson's disease (named after the London doctor James Parkinson, who first described the symptoms). This disease of the central nervous system usually breaks out between the ages of 50 and 60, but it also affects young people. The cause is a death of nerve cells that produce the messenger dopamine. This creates a lack of dopamine in the brain, which progresses creepingly. It triggers the three main symptoms of the disease: slowing down of all movements (akinesia), muscle stiffness (rigor) and muscle tremors (tremor). Affected people walk in smaller steps, their stance is often stooped, their speech is quiet and monotonous, their faces become masked by a lack of facial expressions, their hands shake. In any case, the earliest possible diagnosis and therapy is important to slow the progression of the disease. Parkinson's is not curable until today - not even with the help of deep brain stimulation, which has been used for about 15 years. The electrodes of the brain pacemaker are almost always moved to a specific area in the diencephalon, the so-called subthalamic nucleus. Due to the disease, the rhythm of the nerve cells is synchronized there, "synchronized", whereby the movements of the patients become slower. The electrical impulses of the brain pacemaker, as physicians of the Berlin Charité recently discovered, change the activity of the nerve cells in such a way that, above all, the mobility of those affected improves significantly. Stimulation by the device can be varied to suit the course of the disease. This continues, but slower. However, Parkinson can not be stopped that way either. The deep brain stimulation is usually used only at a late stage of the disease, if the affected can not be helped with medication enough. Currently, however, studies are to clarify whether the earliest possible implantation would not be more favorable. More information: www.parkinson-vereinigung.de and www.kompetenznetz-parkinson.de
