Mom, hold on. Mom, gain strength How families of children with cerebral palsy live in Russia - and what helps them accept this diagnosis. Meduza report

Life expectancy with vascular dementia

Vascular dementia is a severe form of the disease. Dementia is caused by vascular disease, often develops after an ischemic cerebral infarction or hemorrhagic stroke, with atherosclerosis or hypertension; factors in the development of this form of the disease can be heart defects, high lipid levels and other disorders. Vascular dementia affects men more often.

Adequate treatment can help prolong the patient's life, but the disease cannot be completely cured, since the processes taking place in the brain are irreversible. In the case of vascular dementia, it is impossible to give an accurate prognosis for life expectancy. Some patients live several months after diagnosis, while others live several years. Often patients die from concomitant diseases - heart attack, stroke.

In dementia accompanied by Parkinson's or Huntington's disease, the prognosis depends on adequate treatment of these diseases. Most often, dementia with such concomitant diseases is not characterized by rapid progression; the life expectancy prognosis is several years, with Huntington's disease - up to 10-15 years. Dementia with Lewy bodies is a rapidly progressive disease with a life expectancy of about 7 years.

What alternatives to boarding schools exist today?

Boarding schools for people with mental disabilities appeared within the framework of the traditional medical model of disability throughout the world. In this model, disability is viewed as a health disorder. Accordingly, minimization of disorders is carried out through medical intervention and therapy. With this approach, a person with a disability is a problem; he must be “treated,” and for this purpose he must be placed in a special institute and isolated from the rest of society. The first of these institutions appeared at the end of the 17th century, and until the middle of the 20th century they existed in various forms and types for all ages and diseases in almost all countries of the world.

Since the 50s of the last century, the civilized world began the transition to the so-called social model of disability. It involves breaking down barriers between people with any health limitations and society. The main postulate of the social model is that no matter what health difficulties a person has, society is obliged to create decent living conditions for him in his usual place of residence. In 2006, the UN Convention on the Rights of Persons with Disabilities was adopted, prohibiting discrimination against people with disabilities in all areas of life, including civil rights, access to justice and the right to education, health services and access to transport. Russia signed the Convention and ratified it in 2012.

In recent decades, in civilized countries, boarding schools in the familiar sense have gradually begun to disappear. Family-type orphanages began to be created for orphans - a temporary shelter for a child who has lost his family, in which he will remain until he has a new family or the problems in the old one are resolved and he can return. The concept of “foster family” also appeared - another temporary option for a child’s life until a permanent family is found. For adults, there are two key options: assisted living and home support. In the first case, people in need of help live in special houses, each in their own room or apartment, and social workers providing assistance are permanently or temporarily located in the same house. Home support differs from the scheme described above in that the person does not leave his home, a social worker comes to him or lives with him permanently.

Life expectancy for other types of dementia

Dementia can be caused by various diseases. Very often, senile dementia is associated with Alzheimer's disease. In this case, the patient’s age plays an important role: the older the patient, the slower the disease progresses; The younger the patient, the more the disease progresses. The average life expectancy of a patient with Alzheimer's disease is about 6-10 years from the time of diagnosis. Much depends on the age and stage of the disease, the individual characteristics of the body.

The patient's life expectancy is affected by care and activities with the patient. It is very important that a person does what he loves: read, solve crosswords, draw, listen to music. He should not be in an environment of stress or anxiety. The more the patient engages in intellectual activity, the greater the chance of maintaining intellectual thinking, the ability to care for himself, and leading a normal lifestyle for a long time.

Adequate treatment prescribed at an early stage of the disease can significantly prolong life and alleviate the condition. Specialists from the neurology department of the Yusupov Hospital have extensive experience in treating dementia and many other related diseases. Modern diagnostic equipment makes it possible to determine the areas of brain damage and the degree of development of dementia. The use of innovative world-class techniques at the Yusupov Hospital can improve the quality of life for patients with dementia.

“Where did you get a job with such and such a diagnosis?!”

Yana Kuchina , 30 years old, editor, journalist, person with cerebral palsy:

In a person with cerebral palsy (even the very name of this diagnosis is deceitful: it is not “childish”; this condition remains with the person for life), no matter how successful the rehabilitation is, deterioration may occur. You don’t need a great reason for this, like an accident or a compound fracture; it’s enough to get sick with the flu for a long time, wear bad shoes, suddenly gain twenty kilograms, or just get old.

And we have to remember again about rehabilitation, even for those adults who did without it. The local neurologist knows little or very little about cerebral palsy and will only help with a referral to the nearest specialized government agency.

At one time I got what was next to Tsaritsyn Park, at my place of registration. It is impossible to choose any other establishment, even within your city or region.

I was “treated” for three months and it didn’t help? So you're not trying hard!

These institutions do not provide consultations; there is no way to get a set of exercises to take home or a list of procedures that you could spend one and a half to two hours a day on. Do you want to be treated? Get hospitalized! Once a year, the state will pay for a course of treatment for something that cannot be cured. Hospitalized for at least a month. An extract is necessary to extend disability and receive all benefits and benefits.

It doesn’t matter that you may have school, or work, or family. Firstly, they explain to you right from the start that health is more important, and secondly, how can you have a job, study or family with such and such a diagnosis?

Then you are slowly prescribed procedures. Massage - ten times, therapeutic exercises in a group, magnets, mud and something else, depending on your luck. This helps a little. Well, that is, you sat at the computer for eight hours a day, and then you started walking according to a schedule, eating unsalted food, swimming in the pool, doing bends in the gym. If I had gone to this institution as a healthy person, I would definitely have felt better within a month. But this, as we understand, is not my case.

Okay, let’s say specialists can be retrained. The procedures should be replaced, the daily routine should be redone, exercise therapy should be replaced with classes with physical therapists who know the Feldenkrais method, Vojta, and who are developing their own methods. It’s unclear how miraculously this could happen, but let’s say.

What if I still have a job? If I was hired under the Labor Code, I pay taxes, support my family and my vacation is two weeks in a row, no more? Should I quit my job? What if I felt bad not once a year, but twice? If I have small children, I would be happy to live for two weeks on tasteless food and government-issued bedspreads, but I can’t. What if I just want to go to the sea on my vacation? All? I can’t wish for this, with such and such a diagnosis? And what should I do when I’m discharged home, and a month later my back or heel hurts so much that it’s difficult to sleep? Where can I get help?

I am studying physical therapist courses, we are studying the Feldenkrais method. It is not like the gymnastics that everyone is used to: “Raise your right leg as high as possible, repeat a hundred times; raise your left leg...” The Feldenkrais Method works by creating new neural connections. Simply put, we teach our brain to move. It is common to think that movement is a common, natural good and does not need to be specially studied. But anyone who has spent time with young children knows that a child is constantly learning to move.

The child tries to hit the blanket with his hand a hundred times in a row, reach for the red thing, reach for the cat. First he learns to raise his head, then to crawl, then to sit, stand against the wall, and then he lets go of his hands and takes the first step - twelve months after birth. After twelve months of daily continuous training.

People with cerebral palsy cannot move. The brain injury prevented the movement learning process from starting on its own. They also want to grab food and scratch their nose, but they don’t know how and won’t learn without help. Feldenkrais physical therapists teach people to move in a variety of ways so that the human brain can independently choose the best way, the easiest and most effective. We all choose almost the same thing, which is why we walk almost the same way.

During classes using the Feldenkrais method, people do not repeat the same movement a hundred times, which they no longer succeed in, as with exercise therapy. People learn to do this movement. That's the difference.

Ideally, every adult with cerebral palsy should be seen by a physical therapist and they should plan rehabilitation together. There are periods in life when it is not needed at all, everything works and nothing hurts, but you still have to get into such a period.

Course rehabilitation, i.e. Rehabilitation once a year or once every six months, even if effective, is not suitable for a person with cerebral palsy, because the acquired skills are quickly lost, and in fact, you start over again every time. Well, if you were lucky, then again, and if there was a deterioration over the year, then I’m sorry.

Now you are even more terminally ill, congratulations!

In addition, each person has his own potential and character. Some people are ready to train for an hour a day, while others have a hard time with ten minutes. And everyone's desires are different. Some people drive a car and don’t suffer at all because they can’t ride a scooter to the Danilovsky market; others have been dreaming of skiing for forty years and don’t know that, in principle, it’s possible. You just need a special coach, here is his WhatsApp number. The most important thing, in my opinion, is to integrate a support system into everyday life, to make it accessible, like McDonald’s, so that a person can maintain his health without stopping living.

Life expectancy in early dementia

Life expectancy at an early stage of the disease largely depends on the age of the patient. The younger the patient, the more complex and faster the disease progresses. In older people, the disease does not develop as quickly. Detected dementia at an early stage allows you to remain in adequate condition for a long time and take care of yourself. Manifestations of dementia at an early stage are:

• forgetfulness,
• slight mood swings,
• slight decrease in intelligence.

How does lupus affect the body?

(c) Health And Beauty

Brain and nervous system

One in five people with lupus experience headaches, memory loss, mood swings and stroke. Headaches can be caused by vasculitis, a condition caused by inflammation of the blood vessels.

Eyes

Eye problems are common. People with lupus may have:

• Changes in the skin around the eyes;
• Dry, gritty eyes, which affect up to 25% of people with lupus;
• Inflammation of the white protective layer of the eye;
• Retinal blood vessel changes occur in 28% of patients;
• Damage to the nerves that control eye movement and vision;
• Sjögren's syndrome
  is an inability to produce enough tears, which occurs in 20% of patients with lupus;
• Cataract;
• Weakened vision;
• Loss of vision.

Oral cavity

Mouth ulcers are a common symptom and occur in 4 to 45% of people with lupus. Drugs used to treat lupus, such as corticosteroids, can sometimes cause dry mouth, cold sores, swelling, and yeast infections.

Leather

Many people with lupus may develop skin problems. Rash or sores are common. Up to 70% of people with lupus are sensitive to ultraviolet rays. A butterfly rash on the cheeks and nose occurs in 40% of people. This rash is usually patchy or red in color and slightly raised.

Blood

Blood disorders are common in people with lupus. Major blood problems associated with lupus include:

• Anemia - lack of red blood cells;
• Thrombosis - the formation of blood clots;
• Vasculitis is inflammation of blood vessels;
• Thrombocytopenia is a condition that causes low platelet levels;
• Leukopenia and neutropenia are conditions that cause low levels of white blood cells.

Heart

Cardiovascular disease is not only a major complication of lupus, but also the leading cause of death in people with the disease. Half of people with lupus develop heart problems. People with lupus are more susceptible to coronary heart disease because they often have high risk factors. These factors may include high blood pressure, high cholesterol and type 2 diabetes.

Lungs

50% of people with lupus have lung problems. The inflammation caused by the disease can affect the lungs, the lining of the lungs, the blood vessels of the lungs, and the diaphragm. As a result, you may experience:

• Pleurisy is swelling of the membrane surrounding the lungs;
• Pneumonitis is inflammation of the lung tissue;
• Chronic diffuse interstitial lung disease, where scar tissue prevents oxygen from moving from the lungs to the blood;
• Pulmonary embolism - a blood clot blocks the flow of blood from the heart to the lungs.
• Kidneys

Lupus often causes nephritis. It is thought that 1 in 3 people with lupus may develop the disease. People with lupus nephritis may experience weight gain; swelling in the legs, ankles and hands; blood in urine; high blood pressure. If left untreated, complete kidney failure may occur.

Gastrointestinal tract

Many people with lupus have gastrointestinal problems due to the disease or as side effects of medications used for treatment.

Bones and muscles

For half of people with lupus, joint pain is one of the first symptoms of the disease. Other conditions associated with lupus include tendonitis, bursitis, carpal tunnel syndrome, and osteoporosis.

Pregnancy

Women with lupus are at high risk of developing pregnancy complications such as miscarriage, premature birth, and preeclampsia. Corticosteroid drugs used to treat lupus may cause high blood pressure and the risk of developing gestational diabetes in pregnant women.

Life expectancy of bedridden patients with dementia

Bedridden patients with dementia are most often people who are at an advanced stage of the disease. Bedridden patients with dementia often die from pneumonia and sepsis, concomitant diseases already at a severe stage of dementia. The prognosis for dementia in bedridden patients is unfavorable, the condition is complicated by physical inactivity, impaired mental activity, and circulatory disorders. Patients in serious condition are completely dependent on outside care; dementia is complicated by other diseases due to the patient’s immobility. At the Yusupov Hospital, relatives of the patient are trained. Caring for bedridden patients is complex and requires patience and knowledge about the characteristics of the disease.

How do children end up in a boarding school?

First of all, children end up in orphanages from an orphanage: they end up there immediately after their parents abandoned them or (much less often) died. There are also many children with disabilities who have not been abandoned, but whose parents are unable to care for them.

At the age of four, children from the orphanage are distributed to child care institutions depending on the decision of a special commission on what development program the child needs. Since the 50s of the last century, the Russian system has been structured like this: some types of boarding schools are designed for healthy children, others for deaf-blind people with problems with vision, motor systems, and so on.

The head of the Volunteers to Help Orphans Foundation, Elena Alshanskaya, called boarding schools for children with severe mental retardation the “last mile” for children - since they are designed for children who were considered “unteachable.” Due to a lack of places and due to the fact that not all diagnoses are taken into account in the system of orphanage institutions, orphans without signs of mental retardation often end up in orphanages. For example, if the region did not have boarding schools of the so-called sixth type - for children with problems with the musculoskeletal system, children with cerebral palsy or deformities of the limbs may end up in orphanages. Representatives of NGOs visiting boarding schools have repeatedly said that they met 15-year-old and 17-year-old teenagers there who had not had a single lesson in their lives, who did not know how to make their own tea or dress themselves. These children may be quite intellectually intact, but they did not have the opportunity to develop normally during the most important period of life in terms of acquiring knowledge.

Life expectancy of patients with dementia with optimal treatment

Life expectancy with dementia depends on the adequacy of treatment and care. At the first stage, the doctor prescribes diagnostic tests to differentiate dementia from other diseases. Treatment of senile dementia is based on eliminating the symptoms of the disease and reducing the risk of dementia progression. Dementia is an incurable disease, the course of which depends on many factors - age, gender, type of dementia, concomitant diseases, adequate treatment and care. A calm environment and lack of stress help reduce the risk of progression of senile dementia.

Doctors recommend a special diet, vitamin therapy, music therapy, aromatherapy, acupuncture and other methods that improve brain activity. The average life expectancy of a young patient with dementia can be about 7 years; older people with dementia live on average from 7 to 15 years. By contacting the Yusupov Hospital, you will receive medical care at the European level: they will carry out the necessary diagnostics, select the optimal therapy and rehabilitation program.

You can make an appointment with a neurologist by phone.

What happens to children from boarding schools when they turn 18?

According to the law, a teenager in an orphanage at the age of 18 must be examined by a medical commission and, if the commission decides that he can live independently and support himself, he, like graduates of other boarding schools, must be provided with an apartment. But teenagers from orphanages have virtually no chance of successfully passing the commission: they have never lived independently, no one taught them this - and they cannot know the answers to questions like “how much does a carton of milk cost” or “how to get a loan from a bank.” At the HRC meeting, Nyuta Federmesser called the principle of the transition of children from children's children's institutions to PNI a conveyor belt: first, children with disabilities are transferred from children's homes under the jurisdiction of the health departments to children's institutions, and after 18 years they are also automatically transferred from children's institutions to PNI.

Four years before, when residents of orphanages turn 14, the management of the orphanages goes to court to declare them incompetent and, after 18 years, redirect them to adult boarding schools. Forensic examination confirms the incompetence of everyone indiscriminately. Transfer from DDI to PNI is one of the most dangerous and traumatic procedures. No matter how bad the living conditions in the orphanage may be, this life is the only one known and familiar to yesterday’s teenager. The good will of the administration of some children's institutions allows children to stay there for some time after the age of 18: it is known that many “severe” children die after being transferred to a PNI during the first few months. In addition to the fact that moving and a radical change of conditions is stressful in itself, life in a residential care facility is objectively worse: they are less well funded, there are fewer staff in terms of the number of wards. According to human rights organizations, on average, in a children's boarding school there are 15-16 employees per 10 pupils, and in a PNI - 5-6.

Illustration: Alexey Sakhnov / art studio “Perspectives”

Etiological factors

Etiological factors affecting during intrauterine development are various pathologies of pregnancy:

• fetoplacental insufficiency;
• toxicosis;
• premature placental abruption;
• nephropathy of pregnancy,
• Rhesus conflict;
• infections (rubella, cytomegalovirus, herpes, toxoplasmosis, syphilis);
• threat of miscarriage;
• somatic pathologies of the mother (hypothyroidism, diabetes mellitus, heart defects, arterial hypertension) and injuries she suffered during pregnancy.

Risk factors influencing the occurrence of cerebral palsy during childbirth include:

• breech presentation of the fetus;
• premature, prolonged or rapid labor;
• large fruit;
• narrow pelvis;
• discoordinated labor;
• a long anhydrous period before delivery.

What disorders occur with this disease?

With cerebral palsy, intellectual impairment, epilepsy, mental disorders, visual and hearing impairments may occur. This pathology is diagnosed mainly by anamnestic and clinical data. The algorithm for diagnostic examination of a child with cerebral palsy is aimed at identifying concomitant pathologies and excluding other congenital or postpartum pathologies. People with cerebral palsy must undergo lifelong rehabilitation therapy and, as necessary, receive medication, surgery and physiotherapy.

How long do people with cerebral palsy live, read below.

Reasons for the development of cerebral palsy

According to scientific data, this pathology occurs as a result of the influence of various damaging factors on the child’s central nervous system, which cause abnormal development or death of certain parts of the brain. Moreover, the impact of such factors is observed in the perinatal period - before, during and in the first 4 weeks of the child’s life. The main pathogenetic link in the development of cerebral palsy is hypoxia, the occurrence of which is caused by various causative factors. First of all, those areas of the brain that are responsible for providing reflex motor mechanisms and maintaining balance are affected. As a result, paresis and paralysis typical of this disease, muscle tone disorders, and pathological acts of movement occur.

Many patients are interested in how many years people with cerebral palsy live.