Translated material
"Death will come in three years"
With lateral amyotrophic sclerosis, a person gradually weakens and refuses all muscles, at first he cannot walk, then his hands cease to move, and at some point he just stops breathing. When this happens, no one knows. TD collected monologues of people suffering from bass
BAS (lateral amyotrophic sclerosis) is a disease of motor neurons. It affects neurons responsible for movement in the brain and spinal cord. Gradually, the patient weakens the muscles of the arms, legs, back, neck. A person slowly fades away - over time he cannot get up, walk, cannot raise a cup of tea, cannot write, speak. At the end it becomes motionless and once stops breathing.
After how much time and how exactly this will happen, no one knows. At the same time, intellect does not suffer during the bass, the disease does not affect the touch, a sense of taste, vision, smell or hearing. The person remains the same, but he can no longer do anything himself. Why and where the bass arises from, science is still unknown.
Maxim, 47 years old
When I got sick, I was 42 years old. I began to read about this disease and thought that the diagnosis of cancer is better, because everything is clear with it. In the case of BAS, life changes very much, but very slowly, often imperceptibly for loved ones and others. People around for a very long time realize what happened. Unlike, say, from the situation with a stroke. When the person was healthy yesterday, and now it lies.
With the bass you enter the zone of absolute unpredictability, you do not know anything. You do not understand exactly how the disease will occur, whether everything will change quickly. Doctors say death will come in three years. And I have been living with this disease for almost six years.
In the summer, Maxim goes out into the street, and the rest of the time he spends at home in an armchair photo: Arthur Bondar for TDMy disease began with weakness. Even a feeling of fatigue. Then the leg began to move badly. I went to one doctor, then to another, no one could say anything concrete. He lay down on examination to the hospital of the Presidential Affairs Directorate - neither the attending physician nor the head of the department could make a diagnosis.
The reasons are unknown, there is no treatment, there is nothing to do, you just need to wait in the wings Twist this quoteThen we went to the center of neurology to the famous professor Zavvalishin, who quickly looked at the tests, examined me and said: "You have bass." Our conversation lasted no more than five minutes - the reasons are unknown, there is no treatment, there is nothing to do, you just need to wait in the wings.
Now serious medical studies are available on the Internet, including foreign studies. Previously, I knew only that this disease was at Stephen Hawking. When I ran into the bass, I read a lot and carefully and studied this issue for several years. Now I know almost more than doctors.
Nothing hurts with the bass. In any case, I have. Weakness in the muscles appears. At first, one leg weakened. A year later, the second began to weaken. Then hands. Then you limp. Then there is no strength to get up from the chair. You can walk with someone’s help, and after some time you can’t stand. All gradually. I stopped walking after three and a half years.
I think that the one who fell under the tram is harder. He was with his feet yesterday, but today no longer. And here everything is slowly. There is no clear boundary between your normal state and a new reality. You cannot get up, come and sit on a chair, but your brains remain the same. Your attitude, desires remain the same. And there is a large internal conflict between who you are inside, and those who you are outside.
I would like to go for a walk in the park. I would like to take a cup and drink tea myself. But you cannot. And every day you understand that you can no longer. I well remember how I went well, but my hands weakened, and I realized that it was difficult for me to take off the cap from the ballpoint pen. These are trifles that are a million in life. And a healthy person does not even notice them. A small prison, the size of the camera in which is becoming smaller and smaller. Every day the new “I can’t” from which the fortress is built.
By profession, I am an engineer and recently dealt with the design of buildings. I had my own company in which almost 80 people worked. We did large projects - for example, the new NTV television center or the main computing center of Sberbank. Four years later, I had to leave the disease. I myself built this company, and then it actually crumbled before my eyes, because I could no longer solve any problems.
But I do not lose hope that I can still do something myself. Over the past six months, after a break, I began to try to work again, but, of course, when you walk, communicate with people, completely different opportunities.
I live with my mother, two children and a nurse, which is paid by the Orthodox Service "Mercy". My wife left me a year and a half ago. The Lord gives a person trials according to his strength. Some carry them, others are not. God is the judge. My children stayed with me. There are six to my son, I teach him how to play chess, prepare for school. The daughter is already an adult, in September he will go to China for a year. She doubted whether to go or not, did not want to leave me. But we all told her that it was necessary to go. I am very happy about the success of children. Yesterday my son beat me in chess.
Two years ago, I did not see the way out. My company collapsed, my partners sued, it was very difficult. But slowly, you begin to find positive moments in life. The main thing is to treat this philosophically, otherwise you will die. It seems that people quickly burn out from hopelessness.
Tamara, 54 years old
When the bass is diagnosed, a person has already lost 50% of neurons that are responsible for movement. I was diagnosed four years ago. When I began to analyze everything, I realized that the first symptoms appeared seven years ago. Very invisible - a finger on his leg fell ill, then the leg began to tour, but I did not pay attention, I thought the shoes are uncomfortable. All my life I went in for sports and walked very quickly, suddenly it became difficult for me to climb the stairs through the step. It became difficult for me to engage in physical education, I thought, my muscles would remember, everything would restore - nothing like that. The ankle began to go numb. Then I began to look for a diagnosis. She turned to neurologists, lay in Burdenko at the examination. And at the Research Institute of Neurology, they made me an electroneuromiography, which showed that I have a great breakdown of muscle fibers. I was diagnosed with bass and prescribed. They did not explain anything, did not tell.
At home, I climbed onto the Internet and began to read about this disease, my hair stirred on my back of my head. It was written that with a diagnosis of bass, a person dies for four years, and there are no drugs. The person just quietly comes to naught. I experienced horror.
Tamara Borisovna Photo: Arthur Bondar for TDIt would be worth telling about this disease on TV so that people know that it exists.
I stayed with myself, no doctors observe me. When I come to the district clinic, I tell the doctors what they should, they themselves do not say. Nobody comes home to me. The neurologist visited me before, but then he realized that I know more than him, and stopped walking.
Everything becomes very difficult. The idea that you are dying is sticking inside like a nail. Although you try not to think about it.
If a month ago I could raise a cup of tea, now I raise it with two hands. In the morning there is no strength at all - I can’t even raise the telephone phone. I can’t cut something with scissors. When I brush my teeth, I hold the brush with two hands. I can only write with a pencil, the pen is already inconvenient. The needle here, it would seem, is light, but you can’t put it in a thread. I can’t wash myself, it’s hard for me to keep my shower over myself.
When a person simply refused his legs, without them, in principle, you can live. And with the bass the whole body weakens, and you begin to completely depend on other people: "Give me a spoon, take me to the toilet, feed me." You can’t go out into the street, because the entrance is not adapted. My husband takes me in a stroller on Saturdays. There is still an opportunity, I go to shops with him, to hairdressers.
What I could do last year, I can’t do it now. So, next year I can not do what I can now.
Until the fall, I could transfer to the stroller myself and get to the kitchen, to the toilet. I did not ask anyone. In the fall, it got worse. I completely stopped walking, my hands weakened, now I can’t transfer to the stroller. This means that I am chained to the sofa.
I live with my husband, son and elderly mother. Husband and son are not at home all day. Therefore, all day I limit myself to drink, because to take me to the toilet is a difficult matter. When there is a person who can raise me, I don’t think about it, and when I am alone, that is, with my mother, I have to remember this.
To be honest, it is better to die immediately than to lie without movement and look at the ceiling, to torment loved ones. But it is impossible to die right away - there is no euthanasia in Russia, this is bad.
If my hands take off, then they will feed me from a spoon, they will do different procedures for me, I do not want this. And then - who will do this? It will be necessary to hire a person. After all, this is in normal countries, Scandinavian, for example, a person with my disease switches completely to state support, including him a round -the -clock nurse is distinguished.
I’m standing in line for installing an electric lift in the entrance. I am the 186th. Install four pieces per year. So I will receive it in 30 years. Where can I go to complain if I can’t even leave the apartment.
It is scary that no one becomes a sick person here, no one thinks about him. He remains to lock himself in the apartment and die.
I worked as an administrator at a departmental clinic. As soon as I came and said that now I have a disability, they kicked me out. They had no right, but I could not fight - there was no strength. But I can write, count, I could continue to work.
I do not have enough communication. When I first left for a stroller, the people stopped and examined me. Wildness.
My friend, when I saw me in a wheelchair, stopped greeting me Twist this quoteAnd my friend, when I saw me in a wheelchair, stopped greeting me.
At 50, life is just beginning. I do not feel myself at my age. I feel for 35 years. The children have grown up, you are a free bird, but it turns out that a bird is not a bird at all.
Our people eat, drink and buys, buys, buys. Clothes, cars, gold. What a stupidity! A person must spend his life on another. I regret that I put everything off for later. I thought - my son will finish the college, and I will go to Prague, and then I will travel around Russia. The child graduated from college, and I already got sick. So do not deny yourself anything. Do what you want now. Do not work where you do not like, and do not be with people you do not like.
Maria Vasilievna, 62
“I worked as a secretary-referent. When the disease came, I sat at home and was engaged in children. I did not immediately realize that the diagnosis was incurable. Doctors explained that I would live for three to five years. I knew that different organs would gradually refuse, and was ready for this. I immediately pulled myself together and accepted it. I did not talk about it to anyone, so as not to upset my loved ones. It was harder for them to accept.
I have always been a strong spirit. In my life I had other serious experiences. The death of my daughter. I think about my death calmly. No one knows what will happen next. In 2011, a woman died next to me in the hospital, the same as me, we just limped. Then I realized that one day the same thing will happen to me ” - Maria Vasilievna conveyed such a text with the help of the Toby program, now this is the only way to communicate for her. The computer captures the eye, and a person can choose the desired letter with the eyes and slowly compose words. The whole process takes a lot of time.
Despite the incredible difficulties associated with the disease, Maria Vasilievna rejoices every day of life photo: Arthur Bondar for TDI learned about the life of Maria Vasilievna and her illness from the patronage sister of Katya, who oversees her (her work is paid by the “ Live Now ” fund), and Ira’s nurse, which is constantly nearby.
Maria Vasilievna lives with her husband and Ira, she has a son and two grandchildren. When grandchildren come to visit their grandmother, they go straight to her bed and look at cartoons with her. The daughter of Maria Vasilievna died at the age of 14. It seems that this is the only thing that Maria Vasilievna is still very difficult to talk to now, she immediately begins to cry.
Through “Toby”, Maria Vasilievna writes a lot for her loved ones - what needs to be bought, not to forget, long lists of affairs, instructions and questions. And also the names of the films that she wants to watch. She especially loves melodramas and militants.
The disease began nine years ago - at 52, Maria Vasilievna began to limp. The exact diagnosis could not make for a long time. Four years ago, she stopped walking and began to move in a wheelchair. Hands still worked, and she knitted a lot, wrote, read and cooked. Hands moved last year, now no longer.
A year ago, Maria Vasilievna could not swallow herself, and she was put a gastrust, now the food is introduced through the tube directly into the stomach. To facilitate shortness of breath, it is chopping morphine - this drug “turns off” the center in the brain, which thus makes it clear that too many carbon dioxide accumulated in the body.
Three years ago, Maria Vasilievna began to breathe hard, then from time to time she began to breathe through the mask with the help of the respiratory apparatus. Now she is all the time in her. The bass affects the diaphragm-the main respiratory muscle, because of this, the lungs do not straighten to the end, and the mask gives the air to the lungs under high pressure and the person continues to breathe. The respiratory apparatus of Maria Vasilievna can also work in Ivl mode (invasive ventilation). Ivl is also called a lung prosthesis, it does not connect through the mask, but through the tracheostom, and can significantly prolong life - almost all organs can refuse, but a person continues to live with the Ilv apparatus. Maria Vasilievna is very calm and sensible to her illness, she deliberately refuses to connect to the respiratory apparatus through the tracheostom and to the extension of life at all costs.
Foundation “ Live Now ” helps people with amyotrophic sclerosis and other neuromuscular diseases in Russia.
Dove at the house of Tamara Photo: Arthur Bondar for TD