Julian’s personal story
Our drive to change rehabilitation for good was inspired by a personal story.
Julian Specht, co-founder of living brain, had been suffering from temporal-lobe epilepsy since he was 10 years old. Multiple times a day he had epileptic seizures — a “normal” life had been unthinkable. Swimming, riding a bicycle, going shopping on his own — all that were risky activities for him. At 18, his doctors tell him that there is no medication that could improve his situation. His only option for a life free from seizures is brain surgery.
The physicians have identified the origin of his seizures and suggest going through with the surgery. It could heal him from the seizures. Julian deliberates. For a long time. For days and nights on end he researches scientific papers, case reports and statistics. On the one hand he sees the prospect of a life free from limitations. On the other hand the risks resulting from surgery: Death, severe impairment, massive cognitive decline. He asks his doctors what he could do should his mental abilities worsen, since the probability of cognitive decline is high.
The focus of his seizures is located in an area responsible for memory. The doctors tell him about computer-based training. They mention paper-pencil exercises. Mazes and lines of numbers. They do not seem fully convinced of their functionality, but that’s the best treatment they can offer him. Julian is afraid. Afraid, that he will be able to do even fewer things after surgery than before. Afraid, there’s nothing that might really help him master daily life. He is in the middle of his university degree. And he has his whole life ahead of him. Finally he decides to undergo brain surgery.
The surgery is set for October 1st 2015. The surgeons open his skull and resect 6 centimeters of his brain. When Julian wakes up, his head bursts with pain and his face is green and blue, but he feels alright.
The surgery went well. He has no further discomfort. No problems. No impairments. A mere two weeks later he’s back at university. Seizure free. Despite the successful surgery he did not forget his fear. The fear of cognitive decline and a training his physicians did not believe in. He knows he’s not the only one facing this. Even though he was lucky, many others are not.
When Julian meets his fellow student Barbara at university, he shares his story with her and the two think back and forth. Why is the current training not applicable in daily life?
What would a better therapy method need to train tasks of daily life? How could a functional cognitive rehabilitation be designed?
Right after graduation they decide to find a solution and found living brain.
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