His hand stiffened, later he lost his voice, and he could not breathe on his own. The family describes life with ALS | iROZHLAS
The Prague City Swim charity race to support patients with ALS, organized by the ALSA association, takes place on Střelecký ostrov in Prague on Saturday. Proceeds from the event will be used to purchase specialized aids or personal assistance for patients who are gradually losing the opportunity to move.
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ALS is a neurological disease causing a gradual degeneration of cells that control muscle mobility, there is no causal treatment. The patients gradually lose all body movements, in the end they are left with only eye movements.
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The Anýž family from Slaný, a father suffering from ALS, arrived at the event. He was diagnosed after various examinations after about half a year. “The first sign that something was wrong with her husband was shown by the left hand, specifically the fingers of the left hand. The little finger of the left hand began to “deviate”, after a few weeks we noticed that my husband had a weakened left arm, it was a problem for him to raise his left hand above his head. Gradually, things began to fall from his hand – keys, cutlery, he barely unlocked the door, did not open the pet bottle, did not close the zipper or the button, “recalls the patient’s wife.
Soon after, the disease progressed, the husband had fasciculations in his legs and often fell. “The falls were more and more dangerous, thanks to the helpless hands, the husband fell straight on his head, his hands did not slow him down. During his last vacation in Croatia, he fell so unhappily (into an open balcony door) that he cut himself on the door frame, “said Mrs. Anýžová, adding that her husband ended up in a wheelchair. Gradually he also lost his speech, he also swallowed poor food and eventually had trouble breathing.
“He already had such shallow breathing, he kept watching himself and he got depressed. He got so-called goggles in his nose to help him breathe. A stomach and nutrition were also inserted through his nose, so we serve with the nurse through a tube in his nose, “Ms. Anýžová describes the experiences from the hospital, where they even had to revive her husband.
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“It was a terrible moment, it was not known how it would all turn out. The couple intubated, but he was in danger of having a damaged brain because he had been without oxygen for a long time, “recalls the wife, who, in addition to her husband, also takes care of their two sons.
According to her, a normal day looks almost normal. “We have learned some of the instructions my husband needs, I name them, and when I hit, my husband blinks. If I don’t know exactly what he wants and I don’t have it on the list, then they announce the alphabet and my husband blinks at the correct letter. That’s how we put our word together, which is sometimes really difficult, “he admits.
Financing health care is also challenging. Mrs. Anýžová must leave work so that she can pay more attention to her husband. The source of money for a family of four is the husband’s disability pension and care allowance.
Last ride
Some of those who fight ALS themselves also take part in the race itself. One of them is, for example, Jarmila Mijovičová from Třebíč.
Jára, who has always loved motorcycles, sports and music, has been participating in Prague City Swim since the beginning. Before her illness, she went to the gym, did aqua aerobics, practiced tae bo, went snowboarding in the winter and motorcycling in the summer. When she learned 203 ALS in January 16, shortly before her 7th birthday, she decided that she was enjoying all the activities she loved.
“In February I went to the mountains and I went snowboarding without any instinct for self-preservation, I knew it was the last time in 15 years. In June, I rode a rollerblading coast in Bulgaria for a week, unfortunately for the last time. In July, I made an appointment with a friend, a photographer, and had my daddy photographed. I went on the last ride. Then I sold the bike and bought a scooter. I left for him this summer. In October, I still enjoyed an adventure holiday in Thailand. I managed 15 km through the forest, but I was already having a hard time and I started to talk badly, “Jára describes her experiences.
Jakub also had to say goodbye to sports. “I played football all my life and suddenly I was not able to coordinate my movements at all. Then I broke my arm at the match and after removing the plaster I had a better paresis, “says Jakub about the beginnings of the disease.
Compared to other patients, it was more important that his fellow neurologists found out almost immediately. “Imagine that someone puts on a 20-kilo vest, breaks both your arms and legs, and puts a gag in your mouth. Everything will change for you, “describes Jakub, who, thanks to regular care, still partially works as a cardiologist at the Jihlava hospital.
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