Feel fasciculations with ALS

ALS (amyotrophic lateral sclerosis): nerves out of control

Volker Lindenzweig used to be a professional ice hockey player, then the incurable nervous disease ALS was diagnosed in the 45-year-old. The orthodox doctors gave up - Lindenzweig himself discovered an alternative for himself.

On April 5th, Volker Lindenzweig noted in his diary: pain in the neck, muscle cramps, sleepless night. The entry is a little difficult to read, the writing is scrawled, and his right hand is finding it increasingly difficult to draw the letters on the paper. Lindenzweig is a tall man, 45, with short gray hair and small, light eyes. He used to be a professional ice hockey player.

He still looks very sporty, only the right arm is a bit thinner, more motionless. It doesn't really go with the lively man in the T-shirt and jeans. And the diary entry doesn't match Lindenzweig's previous résumé either.

For a long time it went pretty well for Volker Lindenzweig, he had everything under control. "It's enough for you for the second division," his coach had said to him one summer almost 25 years ago. The following autumn he played at Mannheim ERC in the first division. After his professional career, Lindenzweig trained as a technician; he now works for a large car manufacturer.

"I have an uncanny will and belief," says Lindenzweig. A few weeks after the diary entry, he is sitting in his kitchen with green walls and white built-in cupboards. He has a big house in a small town in Hessen. Well-tended front gardens and homemade doorbell signs made of clay - sluggish suburban idyll. His son is playing sports, his daughter is at school, and his wife is teaching a class in her yoga studio in the secret annexe. He takes a sip of lukewarm ginger water and tells of the moment when he lost control of his body for the first time.

"As if I were already in the box"

It was almost two years ago. Suddenly the way home was exhausting for him, he, the former athlete, ran out of breath on the smallest incline. Then the weakness in the right arm followed, at some point he dragged the left leg a little. He had 50, sometimes 60 fasciculations a day, uncontrollable muscle spasms that flashed through his body like small lightning bolts.

Lindenzweig has only known for a few months what is really happening to his body and why it sometimes seems to slip away from him. He has amyotrophic lateral sclerosis (ALS), a neurological disease that gradually paralyzes the whole body. There is no cure and actually no improvement. "I got along with my nervous system for 40 years," says Lindenzweig. "And now my friends sometimes look at me like I'm already in the box."

There are very few people in the world who develop ALS. And often months, if not years, pass before the disease is diagnosed. In conventional medicine, the diagnosis is the beginning of the end, the doctors don't know what to do next. Lindenzweig was also sent home in December with a brochure, a drug that inhibits a neurotransmitter, and a pat on the back. Write a living will, do it with the will - that was the most useful advice from the information sheets for him.

"But how many years are you talking about? When do I have time?" Questions that nobody can answer, ALS cannot be controlled. Lindenzweig knows he's terminally ill. His son says, "You can do it." And for a few weeks now things have been looking up again. Ever since his wife Patricia had the idea of ​​the Ayurveda cure.

Energy boost with Ayurveda

Lindenzweig moved to a clinic in Birstein in Hesse for two weeks. He fasts, meditates, is massaged. The treatment according to the Indian art of healing is completely tailored to him. Mind, body and soul should be cleansed and come back into harmony. "A holistic approach," says Lindenzweig, that was important to him. No focus on a defective gene. No "you can go home now".

Lindenzweig opens his diary and taps on a kind of timetable with his left index finger. Ayurveda is about finding the right rhythm of life for different temperaments. In the morning, Lindenzweig's body is sluggish: The plan was warm fruit and meditation. At noon his body has energy: there was rice with fennel and pumpkin, then an oil massage. Meditate again in the evening, then exchange ideas in a discussion group.

The new balance takes strength. In his sleep, Lindenzweig tossed around stories that went back decades. He dreams of former ice hockey colleagues, he wants to reach them, and somehow can't keep up. In his diary he again noted pain in the neck.

Then suddenly he has energy. The muscle twitching has decreased. The imbalance is gone, the feeling that there is no forward but only an end. He has now lost nine kilos. His old player weight, says Lindenzweig cheerfully. He pulls a piece of paper out of the diary, it is a long list of food, all of them with hieroglyphics. Paprika "g" - he can only eat it chewed. He should only consume sugar and yoghurt "w", a little, or "sw", very little.

Ten years younger

The instructions for feeling well look complicated. At home, Lindenzweig continues to eat Ayurveda. "That's the only thing I can control," he says. "I'm totally in it." Becoming self-absorbed during meditation and talking to the therapist helped him accept his fate, not constantly asking "why". To live in the moment. "I am responsible for my own happiness," says Lindenzweig.

At the moment it is not even possible to speculate about the why, doctors know "w" to "sw" about the neurological systemic disease. Where it comes from, how fast it is progressing. Hardly any finding seems certain: It is assumed that ALS is not hereditary. But his mother died last year, and the diagnosis was like that of her son: ALS. Studies suggest that because of the harshness of the sport, football players are at higher risk of developing neurological diseases such as ALS, Parkinson's, or Alzheimer's. "But I've never had anything in ice hockey," says Lindenzweig.

The two weeks of Ayurveda cost 5000 euros. His family could live on the money for quite a while. "But the experience was priceless," says Lindenzweig. "My therapist thinks I look ten years younger." Maybe he'll be flying to India for a four-week cure at the end of the year. Because at the end of the two weeks the cramps were almost completely gone. And the feeling of control at least a little back.

Important NOTE: The information is in no way a substitute for professional advice or treatment by trained and recognized doctors. The contents of t-online cannot and must not be used to independently make diagnoses or start treatments.