"Get as much as possible"
Gordey Ignatov was born in December 2016. The fact that something serious happened during childbirth, his mother Sasha understood immediately when she saw her son turned blue and did not hear his cry. Later it turned out that the umbilical cord was wrapped around the boy's neck six times, due to a lack of oxygen, the brain was significantly damaged. Gordey spent the first ten days of his life in intensive care on artificial lung ventilation.
“It seemed to me that we should have time to do as much as possible in the first period of my son’s life, but I was very afraid of harming him with my actions,” Alexandra tells RT.
- Therefore, already from two months, consultants of the early intervention program came to our home twice a week and suggested how to build our everyday life, how to properly bathe Gordey, change clothes, put on, so as not to maintain pathological reflexes and not to provoke secondary complications.
Our goal was to create the most developing environment around. "
© Photo from personal archive
Gordey's parents decided to abandon the course of rehabilitation: “I always thought this idea was as wrong as possible.
The child is taken, pulled out of the usual conditions, taken away to where unfamiliar uncles and aunts begin to do something sharp, unpleasant from the doorway, put him in some painful styling.
The child has already got a very difficult start in life, and here I still have to watch how, with my approval, my son is hurt. "
According to Alexandra, it is much better when specialists take care of the child for a long time, see his progress, set big goals and, if necessary, can adjust the process.
At first, she was with her son in class, then she began to leave him alone so that he could learn to interact with a specialist himself.
Now Gordey is working with a physical therapist, an occupational therapist, an alternative communication specialist and a speech therapist, who helps him to maximize the sounding speech, put syllables, put them into words.
“We understand that his speech will not be as complete and free as that of a typical child, and there are a lot of restrictions in speech,” says Alexandra.
- But we see that he really wants to communicate - with family, and with peers, and in general with the world.
And here he is helped by alternative communication, he also deals with a specialist in it.
Communicates with cards, gestures, buttons, communication books. "
© Photo from personal archive
Gordey's parents never treated him like a sick person, Alexandra continues: “Yes, he has epilepsy, it needs treatment, and we are trying to equalize his condition with the help of drugs.
But as for movement disorders, psycho-speech delay, we perceive this not as a disease, but simply as a special condition that dictates certain conditions to us, under which we all adapt. "
About a month ago Gordey had a younger brother.
Alexandra emphasizes that she always wanted a big family: “I myself have an older brother, throughout my life I feel support from him.
And I want Gordey to experience the same feeling unlike anything else. "
"The diagnosis turned our lives upside down"
Sonya Pisareva from Dolgoprudny, near Moscow, is 16 years old.
The girl has Arnold-Chiari syndrome, in which a malformation of the spine (spina bifida) is combined with the wedging of the cerebellum into the foramen magnum.
Because of this, Sonya's circulation of cerebrospinal fluid was impaired in childhood, and the spinal cord was trapped inside the spinal column.
Until the age of four, as her mother Elena recalls, her father constantly worked with her daughter, did massage, exercises: “She got to her feet, she walked around the table, holding on to it.
And then it grew sharply, the spinal cord also stretched out, thinned, and the signal stopped reaching the legs.
Sonya sat down.
For the next six years, we simply did not understand what could be done.
All the doctors said: live and be glad that you have at least a child in this state. "
After several operations, Sonya's outflow of cerebrospinal fluid returned to normal, and the spinal cord was no longer fixed: "She began to feel her legs, even her toes."
The girl moved in a stroller or in a special apparatus with the support of her parents.
The charitable foundation raised funds for Sonya for a year and a half of classes at the April rehabilitation center.
Course rehabilitation, according to Elena Pisareva, will not help children with such a disease: they must be constantly maintained in a certain form.
“We go to classes twice a week, this is a comfortable schedule.
There is no such thing that you come to a new place, you have to get used to it, settle down, get to know everyone - in general, there is no stress when you are almost never at home, ”she notes.
© Photo from personal archive
Sonya began her studies in 2019, during which time she learned to move independently in the apparatus with "walkers", take it off quickly, improved coordination of movements, became more confident, and her back pain practically stopped.
She combines rehabilitation with her studies in the eighth grade and at the courses of a make-up master, and recently she has been carried away by literature on personal growth.
The girl's parents note that she has become more independent and independent, more and more often does without outside help.
Her mother notes that now Sonya has to lose a little weight in order to reduce the overall load and make her classes even more effective.
“Sonya's diagnosis turned our lives upside down.
But now our life has become more eventful and interesting.
With the beginning of rehabilitation, it became easier for us as parents.
We are very happy with our daughter and her achievements, ”adds Elena Pisareva.
"I couldn't breathe normally"
Vasily Demidov - entomologist, candidate of biological sciences, discovered several species of insects, one of which is named after him.
Until the age of 45, he led the ordinary life of a scientist, headed a testing laboratory at the Center for Biotic Medicine of Dr. Skalny, and traveled a lot on expeditions.
During one of them, in the Philippines, a man noticed that he began to feel very sick in transport - which had not happened before even in the most severe conditions.
Then there were problems with balance: Vasily was led to the side when walking, he began to hold onto the handrails in the subway, go down the stairs closer to the wall so that he could grab the handrails and bump into people.
“At the beginning of 2017, coordination disorders appeared, the hands began to obey worse,” says his older brother Dmitry.
- Vasily was annoyed that on the phone he began to hit the wrong place where he was aiming.
I bought a stylus, it was easier with it for a while. "
© Photo from personal archive
On the May holidays in 2017, the brothers went to visit their mother in the Tambov region.
“We did not meet often, he lives in Lyublino, I in Mitino.
And with my mother, I noticed how Vasily lost weight, noticed that he began to walk in a different way, as if he was being carried forward very quickly all the time ”.
Vasily's symptoms were noticed at work as well.
Colleagues recommended that he go to the sports medicine center, where he was previously diagnosed with disseminated encephalomyelitis and atactic syndrome and sent to the Scientific Center of Neurology on Volokolamsk highway.
There, the symptoms of Parkinson's disease were preliminarily set and the appropriate drugs were prescribed.
“He took them for a week and a half, but there was no effect.
During this time, a fast negative trend began.
Vasily walked worse and worse, and in the same May 2017, he fell near his house, returning from work, severely broke his leg.
They helped him to the apartment.
He never left there on his own, ”recalls Dmitry Demidov.
Dmitry believes that his brother was very lucky, because the center where he worked specializes in diagnosing diseases based on the content of trace elements in the body: “Colleagues guessed to do tests for Vasily and saw that the copper content in urine exceeded the norm by more than ten times, and in the blood serum, on the contrary, it was lowered.
Some other indicators also indicated that, most likely, we are talking about Wilson-Konovalov disease.
Later this was officially confirmed by examination by a doctor specializing in this disease and by the result of genetic analysis. "
Wilson-Konovalov disease is a rare genetic disease in which the removal of copper from the body is impaired.
In Russia, there are less than a thousand people with such a diagnosis, and one of Vasily's symptoms became the second described case in the world in the entire history of observations.
The disease is divided into hepatic and cerebral forms, depending on where the copper accumulates.
The hepatic form usually manifests itself in childhood, it is immediately treated, and with it, a quick effect is possible: if you take medication, the symptoms can disappear within two months.
In addition, the liver can be transplanted.
“But Vasily has a cerebral form,” continues Dmitry Demidov.
- Of course, there is no radical method here.
How much a person will recover depends on how serious violations have already occurred.
Copper accumulates in the midbrain, cerebellum, motor and speech functions are affected, respectively.
The disease is congenital, it manifested itself when my brother was 45 years old, that is, copper accumulated all this time, which means that rehabilitation is more difficult. "
© Photo from personal archive
The first thing that all patients with Wilson-Konovalov's disease need to do is to remove excess copper from the body with the help of drugs, and this is a slow process.
“I hoped that in a couple of weeks we would put Vasily on his feet and life would continue as before,” says Dmitry.
- My brother is single, lives alone, and I took a month's leave to improve living conditions, go to doctors and so on.
But after a month I had to hire a nurse, and it became clear that this was for a long time. "
The first year after the diagnosis, negative dynamics continued, and the first two or three months were very fast, he continues: speech practically disappeared, Vasily could not walk, eat, drink or even breathe normally.
But by the end of 2018, there was a marked improvement.
So, judging by the latest analyzes, the withdrawal of copper accumulated in the body has been completed.
Since mid-2019, Vasily began rehabilitation and has now made some progress.
“He learned to roll over from side to side, sit down and get out of bed, can walk with support, started eating and drinking well, using a computer, albeit slowly, trying to write something by hand,” says Dmitry Demidov.
- Speech is the most difficult to recover.
My brother is working with a speech therapist and if he tunes in, he can give out a few words.
Nevertheless, even a year ago it was impossible to imagine that such a thing would become possible. "
"Correct the consequences"
According to Timur Ivanov, a researcher at the Federal Center for Brain and Neurotechnology, an expert at the Viasna charity foundation, permanent rehabilitation for chronic diseases can, if not create a miracle, then at least improve the quality of life.
At the same time, outpatient rehabilitation has a number of advantages over inpatient courses.
“With continuous outpatient rehabilitation, you can set specific goals, track progress and, together with specialists from other profiles,“ move ”the patient.
The instructor is aware of the history of each: which of the patients missed what and when, who has a new orthosis, who has changed something else.
Even in the best hospital, doctors simply cannot know such details.
In this respect, course rehabilitation can be compared with a hotel: we arrived, spent two weeks in a more or less standard room, and left, ”he explains.
At the same time, the system of affordable outpatient rehabilitation in Russia lags significantly behind the foreign level.
“We have good inpatient centers, but, unfortunately, not all patients can stay there for six months, and if they can, in paid centers, it costs a lot of money.
There are few specialists, and general standards for physicians of physical medicine and rehabilitation are still being approved, - Timur Ivanov lists.
“As a result, a person either gets to a neurologist, who can only support him with medication, or to the exercise therapy room, if he is in a polyclinic, where ten people with different pathologies perform the same exercises.”
© Photo from personal archive
The problem is also that for most of our fellow citizens the need for rehabilitation, especially long-term, does not seem obvious. “For example, patients with a stroke, having entered a center at the Institute of Brain and Neurotechnology of the FMBA of Russia (this is one of the best state centers in the country), think that after rehabilitation they will quickly recover and return to normal life,” the expert continues. - People have no idea that a severe stroke, unfortunately, with a person for life: the only question is how much the consequences can be corrected. Sometimes you can return walking, and sometimes it happens that a person can only move with a cane. But if he does not practice, then he may not even get up. "
Timur Ivanov explains this by a lack of awareness: “If you type the word“ rehabilitation ”in the Russian-speaking segment of the Internet, then anything will come out: from hirudotherapy and homeopathy to scammers promising to cure, as we know, incurable diseases that in fact can only be translated into a chronic form and try to achieve remission.
After this, there is no faith, no strength, no money left for rehabilitation based on evidence-based medicine. "
Hirudotherapy and homeopathy are also resorted to abroad, the doctor continues, but this remains at the discretion of the patient and only as an addition to the proven management protocols.
On the other hand, outpatient physical rehabilitation in many Western European countries is included in the compulsory medical insurance system.
It often happens that at the very beginning of the disease, a person is actively engaged, and then realizes that the miracle has not happened, and decides to give up everything, since it did not work out right away. And here, according to Timur Ivanov, the help of competent specialists is needed, not only a physical therapist, but also a psychologist who knows how to work in a team and support a person in time, help revise his goals.
“The decline in motivation may also be because a person went online and read about their disease that it cannot be treated,” he continues. - Here the effect is opposite to that of those who fall for the bait of the swindlers. The disease may indeed remain with the patient for life, but dramatic progress can be made. I had a young patient with toxic polyneuropathy, when he came to class, he could not walk himself, moved with the support of his father. The effect was in less than two to three weeks. Now the guy walks on his own, he comes to classes by car ”.