Breathe

How to continue to live when there is no hope

Dad fell ill four years ago. Speech has become slow, illegible, like a drunk. There was shortness of breath. Doctors suspected asthma, stroke, laryngeal tumor, esophagus tumor, lung tumor ... The tests did not confirm anything.

To one of the several neurologists in Russia - specialists in the side amyotrophic sclerosis (bass or ALS) - we came when dad already spoke. The doctor kept her parents under the door for half an hour, looked around the dad and said approximately: you have a bass, you have two years to live, there is no treatment.

And said goodbye.

On the Internet it was written that there are several types of bass. At the first, like Stephen Hawking, the disease kills neurons responsible for the work of the muscles of the arms and legs. First, patients begin to stumble on the street, drop dishes in the kitchen. The path from the stage: “Something I began to get tired quickly”, most people have been going on in a maximum of five years to complete paralysis.

Dad was diagnosed by another, bulbar, type of bass. He kills the neurons of muscles responsible for speech, swallowing and breathing. Under him, they died not from paralysis - from suffocation.

In general, we did not believe the doctor.

There is no reliable medicine for bass. The only thing, the riluete, prolongs life on average for a year, and provided that you begin to take it immediately after the onset of the disease. The second, Masitinib, used to be used to treat oncology in dogs, and only recently began to test people on sick bass. Later we met many desperate families, who, without waiting for the results of clinical trials, bought Masitinib in veterinary pharmacies, at random selected a dose.

We continued to go around neurologists. Some agreed that Pope Bas, others denied, the majority did not hear this word. We learned that in Russia there are only about seven hundred patients with a diagnosis of BAS - the chances of meeting a doctor who knows about this disease and will be able to diagnose at the initial stage, are very small.

The winter before last I came to the Fund for Help with BAS. The employee of the Katya Foundation sympathetically and in detail told some meaningless, impossible things-things that have nothing to do with the pope, who at that moment at work wrote an analytical note about space engines, or to his mother, who planned a summer journey along the Volga, or to me.

- It will become difficult to swallow water, it is better to give mashed potatoes and make sure that there is no dehydration.

- In your pocket, you need to wear a tablet of Lorosepam - will save with a sudden lingospasm. It will seem that you are suffocating - but it will pass soon.

- When it becomes difficult to swallow saliva, a special patch will have to be glued behind the ear, which will reduce salivation. In Russia, it is not certified, it is necessary to carry from Europe.

- Before the voice disappears, you need to get used to using the tablet. If the hands paralyzes, the device that fixes eye movements will help ...

I remember how I left the fund. She sat on a bench on the street, inhaled the ice air. I felt that I could not exhale, scream, get up. I can't.

About a year ago, the pope's voice completely disappeared. It became difficult to cough with a cold - it is impossible. Pneumonia, antibiotics, hospitals began.

The disease posed questions that a person should not ask himself.

How to explain to dad that he will not be able to swallow soon and will have to install a gastrous food - a tube for liquid food, which will stick out of his abdomen?

How to explain that in order to clench, a special device will be needed?

How to suggest making a choice: an artificial ventilation apparatus or tracheostoma? The first will cover the face with a dense mask, but will give another six months or a-year of life. The second will go from the trachea and will give the opportunity to breathe, but will forever tie to bed, with an absolutely clear consciousness, a ban in the body without the opportunity to speak and move - perhaps for many years.

It was impossible to ask ourselves about it, and we replaced these questions with others. How to find another neurologist? Where to make night pulsoximetry? Frolov’s breathing simulator or a bag of an outpatient? Maybe acupuncture again? Or still try Masitinib? ..

Others sounded between these issues: how much time do we have? Why are we powerless? Why are we? For what?

All this seemed like a plane crash in time. You know that there are a plane crash, but far, with strangers, not familiar to you. Why are we?

... The last time, in June, dad was in a hospital with another pneumonia, it seemed not for long. Everything began to deteriorate rapidly: the swallowing muscles weakened, the saturation of the blood with oxygen fell, the analgesics did not knock down the temperature. Resuscitation, around the clock, a buzzing apparatus of lung ventilation, a dropper with a nutrient solution, a dropper with an antibiotic, droppers with all the antipyretic, which are in the hospital ...

In the evening in the hospital, my mother and I talked for a long time about how terribly dad would realize that the lung ventilation apparatus cannot be removed, that it is time to put a gastrust in the stomach and think about the tracheostoma. We were afraid how dad would perceive the outline of normal human functions, dependence, limitation of movement, constant horror of suffocation. Will he agree to the tracheostom? If not, how long will we have? Six months? Year?

Dad did not wait for this conversation. He died at dawn, quietly, in a dream.

Since then, I think that this was his choice: to leave without waiting for the worst that the disease carries. We still do not have the strength to accept his choice.

All the time, while dad was sick, the Fund for helping people with the BAS “Live Now” helped us: it gave equipment that it is impossible to buy yourself, a medicine that is not sold in Russia, and was just nearby - the fund doctor came to the hospital in recent days, nurses could always call when it was completely terribly and hopeless.

Because of the bass, it’s scary and hopeless seven hundred people, and they have nowhere to go more. In ordinary hospitals, most often they did not hear the word “bass”, most doctors cannot configure the censer or non -invasive ventilation of the lungs - and simply do not know where to get them. And certainly there is no one who can explain to the sick and their loved ones, what happens to them, what needs to be done and how to make life easier.

The fund does a job that the state does not take and will never be able to take on. But he himself needs help. A large philanthropist, thanks to which the fund lived in recent years, cannot fund it anymore. Since July, the fund and the service of assistance to people with BAS in Moscow and St. Petersburg, in which neurologists, physiotherapists, speech therapists, nutrition specialists, psychologists, and experienced nurses have been working, have been under the threat of closing. In order for them to continue to work, 4,500,000 rubles are required monthly.

When dad just started to get sick, the doctors of the fund explained to us: all patients with the bass at some point make a choice: stay or leave. The first - more. Without a fund, their life will become completely unbearable.

Elena Racheva , "New"

Everyone can help the Foundation
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https://alsfund.ru/campaign/pomoch-fondu/

Alexander Ivakhnenko, 49 years old, dancer, entrepreneur

He has been sick since 2016. With the Foundation since 2017

“I have known Sasha since the age of 13. He met with my best friend. Everyone said: such a couple! Picture, ”says Zhenya. She is 39 years old, two years ago she married Sasha.

Zhenya and Sasha are professional dancers, both lived in the United States for a long time. Sasha moved there in the early 90s, under a contract: he danced on a cruise liner, he met his first wife, Irish.

Zhenya and her first husband-a dance partner-left for America in the late 90s.

“And we met again with Sasha in a family album with Akrobat friends, in 2000. I thought it only happens in the cinema. She sat with them, leafed through the pages and suddenly saw Sasha.

We met with him only after 7 years later: he came to these friends, and I lived with them for some time. And after all our conversations, he said: “Yes, I remember something. A little girl in a skirt of ribbons. " And all.

But when we met, we had a feeling of some crazy, crazy joy. We talked with him all week before his departure. Both had a difficult situation in the family. But for him the family was always holy, he was not going to leave his wife. And for each other we became such vests. “Well, hello, my favorite vest,” he always said when we called up. We did not even see each other, but we called each other, they said. They gave advice. Once every few months, for many years.

Then Sasha began a heavy divorce. And then I had some problems with her husband, Sasha called and said: “Come. You need to rest. ” I flew to him the first morning flight.

I filed for divorce in 2014 and immediately came to Sasha. We had an agreement. He said that he did not want to marry anymore, laughed: “You know, you and I began everything like in a movie. If we get married, then, too, as in a movie: we will leave for Las Vegas, get drunk, someone will marry us, and in the morning we will not even remember how it all happened. ” In May 2016, he suddenly made me an offer. And he wanted us to get married. ”

Sasha and Zhenya got married in July 2016. And a month and a half after the wedding, Sasha damaged his eye: in the production, a small fragment fell into the eyeball and his eyes became inflamed. After the operation, the doctors said that Sasha could not see, but his vision began to recover.

“In December 2016, Sasha began in memory. He began to talk monosyllabic sentences, confused the top and bottom, left and right. I could put the car and forget where it is standing. But at the same time, he understood everything. By the beginning of 2017, Sasha began to stumble. By March - choke on food and even water, it became difficult to swallow. By the summer, bouts of rabies began - very sharp, sudden. Once he even jumped up and began to strangle me. Then the attack ended, Sasha had a fright in his eyes, and he sobbed. He sat on the edge of the bed, cried and said: “Zhenya, help me. Save me. I don't understand what's wrong with me. "

Now Sasha does not speak, does not swallow, does not get up without other people's help and understands less and less: in addition to the bass, he also has Parkinson and Dementia. It lies in the center of palliative medicine, breathes only with the help of an artificial respiration apparatus. Eugene is constantly located next to him: sleeps next to him, eats, feeds, changes the settings of the respiratory apparatus - sometimes a few minutes.

Bas Sasha was diagnosed only in October 2017 in Moscow. Then Sasha and Zhenya went through the Internet to the Fund for Help the Patients of the BAS "Live Now".

“Then we did not know that we needed a breathing apparatus. This was advised in the fund. I was afraid that Sasha in a fit of rabies would tear him off. And my dad played the scene, said: "Sasha, you will now be a pilot with us." And Sasha immediately smiled - he did not speak at all then. Then, when they switched to the front mask, I said: “Sasha, you are increased in rank: now you have a pilot of a strategic bomber.”

Each person with bass has a choice: to live or not live. If the patient, knowing this diagnosis, unequivocally decided that if he would come when he could not eat, there is no need to feed him, if he can’t breathe, then this is his choice, then this is his choice. Yes, selfish. But him. And this choice must be respected.

In our case, Sasha made a choice. If he can no longer swallow, but reaches for every plate of food, then he wants to eat. We will put a probe, feed it, save his life. And then already as God will give.

Sasha and I wake up in one ward every day. I go to kiss him. Sasha’s hand already rises poorly, but he hugs me, tries to stroke through his hair. The muscles of his face no longer work, there are no facial expressions, only his eyes smile. I am waiting for this smile - and for the sake of it I am ready to live with him another morning, another day. Only for this. "

How did the fund helped?
The apparatus for lung ventilation (was provided for free rent) - 250,000 rubles.
Caucator (provided for free lease) - 500,000 rubles.
Medical nutrition - 1200 rubles. per month.
Food thickener in case of violation of swallowing (5-6 pcs.) - 600 rubles/pc.
Formen nurse - 300 rubles/hour.
Classes with musical therapists (full -time specialist).

Nikolai Dyachenko, 71 years old, basketball player, three -time USSR champion

He has been sick since 2015. With the Fund since 2018

“I could not move without movement in childhood, I was twitching. And one of my friends called me to basketball. So I started playing. "

The growth of Nikolai Ivanovich Dyachenko - 2.12 m. For his basketball life, he managed to play as part of CSKA (1972–1976); To be among the candidates in the USSR national team at the 1972 Munich Olympics and refuse to move to Spartak for this trip; to leave in 1976 to train the army tank club in Germany and return back in 6 years-to the beginning poverty; Work in the Children and Youth Lokomotiv; At the age of 56, go to America as a coach and return to his homeland in the early 2000s. His family almost always lived without him: dad - at the training camp, her husband - in training. “If not for this sore, I would still have trained,” he says. - I felt amissfully in 2015: my legs began to walk badly. Well, I think, old age: the matter by 70 still, probably, everyone has it. ”

“In general, he all started with his lungs, with shortness of breath,” says his daughter Sasha. - Dad began to get tired quickly. We attributed it to age. And since October 2017, he fell into intensive care three times, including with suspicion of stroke. The neurologist suggested the bass. Collected a consultation. The specialist in this disease saw muscle atrophy in his dad and shoulders: with the bass, the muscle is destroyed, in its place there is a hollow - and immediately understood everything.

“I lost all: in 2012 I weighed 135 kg, now-100,” says Nikolai Ivanovich. “I asked all the doctors: in the West - there is also a development, there is Germany - there they should also know how to treat it, and doctors say: there is exactly the same there.”

“In December, dad said that they needed a respiratory apparatus and offered to take it home,” Sasha continues. - They say, the disease is not treated, it is impractical to occupy a bed in the hospital. We did not understand anything. Where to get the device? How to configure it? Do I need a nurse? It's like a 15-year-old girl to throw a baby: Hold it, he is now yours. The doctors we called at home did not even hear about this disease, each time asked: “What is it? Dementia?" I started looking for information on the Internet. And I went to the "Live Now" fund. They gave the equipment there, explained everything. In the BAS service, which works as a joint project of the Foundation and Hospital of St. Alexy, you can get a respiratory apparatus, different medical equipment, and learn how to care for such patients. You can get acquainted with other patients and support each other. Without a fund, we would have left completely alone. ”

According to Sasha, the fund explained why it was important to tell the patient about his illness: “It was necessary to explain to Pope in the most understandable form what would happen to him. I had to tell that the disease is rare, that doctors do not know how to treat her, that almost all the muscles refuse her ... ”Dad asked:“ What, I can’t say? ”

As Sasha recalls, his father was waiting for his daughter to give him hope. But she could not. “I told him that he could not say. But while we live, dads, while we wake up every morning, while I can kiss you, shake your hand, you and I will live and enjoy this. While we can walk, we will walk. While we can enjoy scandals with each other, we will scandal. I can't give you hope. I suggest you just live. ”

How the fund helped
Caucator (provided for free lease) - 500,000 rubles.
Masks for a non -invasive lung ventilation apparatus - 16,000 rubles/pc.

Victoria Petrova, 49 years old, artist-former

He has been sick since 2012, with the Fund since 2012

“First, nightly convulsions began, in the winter of 2011. I could not jump. Rather, she jumped, and her leg turned up. In April, I began to notice that the finger on the leg was bent worse, numb. I went to the district clinic, passed tests - everything is fine. In the district, they also did not find anything. She came to the Research Institute of Neurology, examined. I was lucky: the diagnosis was made quickly, by June. I did not know anything about the bass, I only asked: "They live with this?" I was told: "Unfortunately, no." I haven’t told my daughter a year another year, said that doctors still could not make a diagnosis. ”

Victoria sits on a kitchen sofa, sometimes asks Tanya, a nurse, plant it more comfortably, put a pillow, bend her leg. Vicki's fingers move, she can type messages, but it is hard for her to write for a long time. To communicate too: speech is not always clear, after almost every sentence, Vika clarifies: "Do you understand?" Explains again if not. Sometimes Tanya explains for her: she understands Vika from almost half a look. Tanya pays the fund. “I myself simply couldn’t,” says Vika. - A man dies alone. But until the very moment, the fund helps him. ”

How the fund helped
Installation of gastrostoma - 7800 rubles.
Electric column - 150,000 rubles. + replacement of batteries 12,000 rubles.
Medical nutrition - 700 rubles/month.
Medical assistance (doctors of the BAS service go home).
Договоренность об установке подъемника в подъезде дома.

Татьяна Мачнева, 48 лет, инженер-технолог, программист

Болеет с 2009 года, с фондом с 2011 года

«У меня никогда ничего не болело. Мы всегда были с мужем за активный отдых: на рыбалку ездили, грибы собирали».

Татьяна лежит на кровати. Чтобы заговорить, ей нужно повернуть голову, и дочь подходит, чтобы помочь. Муж Андрей приносит кролика и кладет на него танины руки, но они бессильно опускаются на кровать. Таня говорит отрывисто, после каждой фразы делает глубокий вдох через дыхательный аппарат.

«Потом я начала спотыкаться на левую ногу. Тошнило от запахов — как при токсикозе. Нога стала подворачиваться, рука плохо подниматься. Это было в 2009 году, мне было всего 39, я не ждала беды. Пошла к мануальщику, решила, что защемила позвонок. Он провел пару сеансов и сказал, что боится меня трогать: ощущение, будто у меня кости отделились от мышц. Предположил, что у меня либо рассеянный склероз, либо БДН — болезнь двигательного нейрона. Я залезла в интернет и сразу же нашла БАС — симптомы совпадали.

Я сделала электромиографию, пришла с ней к неврологу. Он сказал, чтобы я меньше слушала всяких идиотов.

Правда, в больницу меня положил, но выписал через три дня со словами, что я симулянтка. А уже через три месяца я получила вторую группу инвалидности.

Потом мне повезло: в НИИ неврологии я попала к Алексею Васильеву, он специализируется на БАС. В марте 2010-го он поставил диагноз, но рассказал о нем не мне, а отцу. А тот решил ничего мне не говорить. Правда, когда он вышел от врача, он плакал. Я увидела — и поняла, что это все.

Мы пытались понять, откуда болезнь, почему. С 95-го по 98-й мы с Андреем работали на Байконуре. Потом вернулись, родили сына, но я каталась туда до 2007-го. Один раз сдуру после пуска «Протона» залезла в шахту просто посмотреть. «Протон» летает на токсичном топливе гептиле, он еще не испарился там. У четырех рабочих, которые занимались обслуживанием ракетоносителя, сегодня неврологические заболевания.

Из нашей поликлиники № 151 БАСом болело всего два человека. Посмотреть на меня созывали всех врачей, никто из них понятия не имел, что это у меня. Внешне я была абсолютно здоровой, единственное — мучилась от одышки, объем легких у меня стал гораздо меньше, чем у нормального человека. Первый раз пришла в поликлинику, врач посмотрела: «Вы сами дошли? Exactly? У вас возраст 102 года, если судить по дыханию».

I'm not afraid of death. Но я хочу смотреть за внуком. Смотреть, как он растет…

В 2010-м мне давали срок — два года. И как диагноз поставили, мне сон приснился: пазик такой, в который гробы кладут, ждет меня у подъезда. Я собираю вещи, смотрю из окна, выбегаю — а он уехал за угол уже. Так я и жду, когда мне сон приснится, что пазик вернулся за мной. И живу».

ЧЕМ ПОМОГ ФОНД
Аппарат НИВЛ с шлангами и масками (4 шт.) — 300 000 руб/шт. + 16 000 руб/шт.
Инвалидная коляска (2 шт.) — 10 000 руб/шт.
Белковые сухие смеси — 2400 руб/мес.
Прибор Tobii для общения при помощи глаз и ноутбук с программой Tobii — 10 000 руб., ноутбук — пожертвованный.
Электрическое одеяло — пожертвование.
Специальный биотуалет для инвалидов — 5000 руб.
Откашливатель — 500 000 руб.
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