Florian from Munich
Florian is 40 years old, the younger of two brothers, and lives with his 76-year-old mother in Munich. Florian has had epilepsy since he was 9 years old, possibly as a result of meningitis/encephalitis that was detected too late. His mother Elisabeth remembers: 2 weeks before the first epilepsy seizure he had a stiff neck and was then a few days in Klinikum Harlaching (Munich), and there he was only massaged at that time. Then it was said at some point later that the stiff neck was the beginning of meningitis and later encephalitis and that might be the reason for his epilepsy.
“One day in March 1990 I found Florian wriggling and shaking in his bunk bed. He was sleeping in the same room with his brother Manuel – Florian upstairs, the older one downstairs. Since it was carnival time, I first thought he was having a joke on me, but then I realized he couldn’t stop and immediately called the family doctor. By then Florian was 9 years old. The whole bed was wet, but he was not a bed wetter. Then the emergency doctor was called and Florian was taken to Haunersche Children’s Hospital in Munich.” The doctors diagnosed epilepsy, kept Florian in the hospital for 2 weeks, prescribed medication and were confident that this would get his epilepsy under control and Florian would become seizure-free. This reassured the family at that time.
At school, everyone was very supportive and helpful. There was a mat in the principal’s office in case Florian suffered a seizure during school hours. And then when he went to First Communion, a mat was also placed in the church in case of a spontaneous seizure. However, Florian had regular seizures despite the medication, about one seizure per week, and seizures even when he was well – both during the day and at night. Five years after the first seizure, Florian came to Bethel clinic in Bielefeld for treatment for a few months. Surgery was ruled out because it would not have been possible to operate on all the affected areas. Florian was therefore permanently dependent on medication and extensive care and never became seizure-free. Until the fourth grade, he participated in general schooling, then he went to a private school where his special needs could be better taken care of.
Florian’s father, who died a few years ago, ran a law firm in Munich and his mother also worked there. In the years leading up to adolescence, Florian developed various anxieties and was always lovingly cared for by his entire family. When he was in Bethel for a longer stay for further examinations, his mother came to visit him every weekend. Over the years, Mrs. Lindner became more and more familiar with the effects and after-effects of the disease and the associated risks, such as SUDEP. She knows exactly how to turn and position her son to avoid further complications from a seizure as much as possible. Recently, the Lindner family has also had the NightWatch with GSM module and they are currently working with caregivers to get Florian into a good care facility. Florian has been under the care of Dr. Stephan Arnold, MVZ Nymphenburg in Munich, for years and they feel he has received excellent care there.
Florian is a very confident, warm, and empathetic man. He copes well with his disease and epilepsy also annoys him sometimes because he can’t do as he likes. For example, can’t just go out alone or go away. The disease makes him dependent on the care of others and yet Florian has remained confident and interested in many things over all these years. He likes to help his mother with all the household chores, he likes to help with the preparations for cooking and in the kitchen. If his mother is ever unwell, he is totally touching and puts his arm around her or says motivationally “Come on, Mom, I’ll ride with you in the car, so you don’t have to go alone.”
“Florian needs constant care. He is not in a wheelchair, he can walk a bit on his own, but the wheelchair must always be with him, even when we go to Holy Mass. He likes to go to church, and every Sunday if he can. Our home church is the baroque church of St. Maria Thalkirchen, it is our beautiful pilgrimage church. Florian knows the priest personally and the priest always gives him a pep talk, he also visited him in rehab after his suicide attempt. Florian is very religious, he says prayers in the evening for the animals and also for his brother and that his mother will live for a long time. Sometimes I hear him praying, which is always very nice.”
The magazine “European Safety and Technology” is Florian’s favorite magazine. He likes to watch all kinds of news, “it starts with Vox and ends with the Tagesschau. Politically, he is very interested”. We like to go out to eat, either Croatian food at the “Opatja” in Thal or Greek food. Sometimes Florian also donates some money for animals, e.g. “so that the bears don’t have to dance like that in Romania”. His mother loves him very much. And Florian loves his family very much. His grandma passed away in 2019 at 102 years old and he visited her regularly until the end.
We wish the Lindner family continued strength and all the best!
The interview was conducted by Birgit E. Langen/NightWatch / December 2021