The story of a man to whom Coach Slavia dedicated master titles

What is ALSA?
* The association brings together patients and professionals interested in amyotrophic lateral sclerosis.
* Provides patients with services such as physiotherapy, speech therapy, psychotherapy, occupational therapy and nutrition.
* Supports even close patients caring for patients with ALS.
* It also operates a rental of aids, organizes reconditioning stays and trips of specialists to the homes of patients.
* The goal for the future is to create a specialized center for patients with ALS.

A teacher of yoga, karate, but also a masseur who traveled with futsal and football teams around the world. Vladimir Mikulas was forty years old, he had twins a year old, he was planning a wedding. “We were in the most beautiful period of our lives,” Vláď’s wife, 36-year-old Denisa Mikulášová, goes back in time.

However, he admits that they did not perceive some warning signals of his body. “He was very tired. But we attributed that to having small children. In addition, at that time he got his dream job at the football team, “he recalls.

Voice controlled device

In February 2017, a big blow came for the family. Doctors told Vladimír that he had amyotrophic lateral sclerosis (ALS), meaning that his muscles were dying.

“The hospital just told us to save. But otherwise we didn’t get more information, “says Denisa. At night, therefore, she began to find out more. “And I’ve found the worst information that there is no cure or treatment for the disease, and patients die in an average of 3 to 5 years, but they can still do it within a year.”

A few weeks after the diagnosis, Vláďa joined the non-profit organization ALSA. “It simply came to our notice then. We mainly used speech therapy examinations. In May 2017, we went with them for a four-day reconditioning stay. “

“I didn’t want to go there,” came a voice from the tablet. And it is Tobia’s tablet and device that allows Vlad to communicate with his family. Tobii senses the movement of the eyes that Vlada denies on the keyboard. And the tablet uses voice output to read what Vlada is “typing” on the tablet with his eyes. “That’s right, Vladík didn’t want to go there, but then he liked it there,” laughs Denisa, who describes that her husband spoke at the beginning of the year.

“In February, his voice served him. He spoke quietly, but he spoke. During the corona, however, he caught pneumonia, lost a lot of weight and lost his voice, “describes Denisa.

In addition, due to the quarantine, he lost assistants from day to day, who came to him regularly and helped the family. At the same time, however, he lacked other services – physiotherapy or massage. And from day to day he didn’t even have social contacts.

“Due to pneumonia, we also lacked a coughing assistant, without whom Vlada would probably not be here anymore, because he was suffocating with mucus and could not cough up. Fortunately, the ALSA organization immediately lent us this device, which saved Vláď’s life. They also lent us a bathtub jack, a cart and a mucus extractor. ”

In 2017, doctors did not give Vláď much of a chance. But he defied fate. And this year, before quarantine, he went to Spain with his wife and two sons for two months.

“It simply came to our notice then. But we gave it! It was an unplanned, amazing event. We decided before Christmas, we flew on January 4. One realizes that death can come at any time. But I don’t want to stress when it will be. We live here and now. “

Vladimír Mikuláš won the Public Award in 2020 as part of the Olga Havel Award.


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