TURETTA SYNDROME IS A neurological disorder that causes people to involuntarily perform violent repetitive movements or make sounds. Medicines can control unwanted symptoms, but they cannot be completely removed . For Elena Kostikova, the syndrome first manifested itself in kindergarten and became more pronounced with age. She told us about life with this peculiarity.
Watch TV less
It is wrong to say that I have an illness: syndrome and illness are different concepts. The disease is treated, and Tourette’s syndrome is with you forever, it can only be muted. We got it with intensified year by year: in the past there was only one obsessive movement, then there were others.
In my dad’s the same syndrome, but less pronounced and appeared already in adulthood – and we have it from childhood. For as long as I can remember, I blinked, that is , I did not just blink, of course, but strongly closed my eyes first, both eyes, then one. In kindergarten, I did not pay attention to the movements – in my opinion, I was not teased too much. Well, she blinked and blinked. In the family I never said, “Do not jerking,” “Me for you ashamed,” “You are not this” – apparently, so I have no complexes was not. They loved me very much, and my mother always supported me. At school, Tourette’s syndrome was also not strong: I just closed my eyes, and my little finger twitched. As a teenager, I was more worried about my, as it seemed to me, a long nose and thin hair, rather than obsessive movements.
Several tragedies have affected my current state: I have lost loved ones. When I was twenty years old and I was pregnant, we buried the man whom our whole family loved – my mother’s brother, he was thirty-six. He was not just an uncle for me, but something much more: he was probably the head of our family. Three years ago, another grief happened – my beloved nephew died, he was only thirty-three. We were very close. After his death, the twitching became even more.
Obsessive movements are with me almost constantly. They happen consciously, but I cannot but do them – I feel physically ill. It’s impossible to explain – I just have to do them. Even doctors cannot find a cause and offer treatment: Tourette’s syndrome is very poorly understood . Now almost my entire body is involved: I blink strongly, twitch my head and hand, legs when walking. Even when I go to bed, I do not immediately fall asleep due to the fact that my head and limbs move. It is necessary to correctly lay the left hand so that it does not move, and do the same with the leg. Only after that I can already fall asleep – and in a dream I do not feel anything.
Obsessive movements are with me almost constantly. They happen consciously, but I can’t help but do them
– I feel physically ill.
When I watch TV, I repeat the phrases after the characters of the program or film, and many times, until it turns out like a character – with the same expression and intonation. Or, it happens, I hear a conversation on the street or in transport and repeat after the speakers. In crowded places I can restrain myself – whisper, for example – but at home I repeat it loudly.
In Soviet times, they did not even hear such an expression – “Tourette’s syndrome”. When my mother took me to the doctors, they answered her : “Let him watch TV less.” And what TV used to be – “Good night, kids” and ” Visiting a fairy tale”? On this our visits ended. Then, when there were more obsessive movements, my mother studied the medical encyclopedia, called me and said: “Lena, I found symptoms like yours. It is called “Tourette’s syndrome”. And then I started going to doctors, asking: ” Maybe I have Tourette’s syndrome?”
I was diagnosed just a year ago, now I’m forty-six. Before that, I went to ordinary clinics, and the neurologists, whom I told about my symptoms, answered: “Well, here you are , nothing twitches. I look at you – you are a normal person. ” I said: “I am a normal person. I sit and try to restrain my movements. ” They disowned my words: “No, no, no, you invent everything, you have nothing.” A year ago, I made sure that they gave me a referral to the Scientific Center of Neurology – there I was referred to a doctor who specializes in Tourette’s syndrome. The doctor examined me, asked a few questions and immediately diagnosed me .
When I found out what happened to me, relief came. I and used to think, “Well, I live and I live,” – but it is now understood that this does not take place, and does not recover. This means that I will continue to live with Tourette’s syndrome.
As a child, I went to a pioneer camp, where I liked to go to knitting. I would still love to do it, but I can’t stand the flickering of sharp objects in front of my eyes. Although there are things that improve the condition – walking the dog, for example. You go, you watch the dog run, and it calms. You don’t have to pretend to him – as he is, he loves you that way . I also love books: when I read, I don’t even notice whether I’m twitching or not.
For me, the hardest thing in life with Tourette’s is the physical condition. In the evening, you get so tired of the movements that you don’t have the strength to make plans. Usually washing the floor is no big deal, and after that I have to lie down to rest. The movements are unusual for the body and cause physical pain. Let’s say I wash the dishes: the sink is against the wall, I jerk my hand or head and hit the wall hard. The shoulder hurts constantly because of the movements – as well as the left side of the neck and head. Periodically, the leg aches due to the fact that the foot is turned inward.
Now I only blink strongly in certain situations – for example, when I see someone drinking tea with a spoon in a mug, or when sharp objects are standing, not lying. If someone waves their hands in front of my face or points a finger, this also causes obsessive movements. If I see a tile – in the subway, for example – then one foot should step on the strip, and the other step over it. Similar to the symptoms of obsessive-compulsive disorder: I’ve read that Tourette’s is often coexisting with OCD.
I visit a neurologist and take medications. When the treatment was just started, it became easier for a while. I remember even saying to my mother: “Can you imagine, sometimes it happens that I am not at all twitching. For a few moments I feel like an ordinary person, nothing interferes. ” But then the body adapted to the drugs, and it got worse. Recently, I again went to see a neurologist at a research institute – she added more pills, and doubled the dose to the old ones. I will try, as long as it doesn’t get worse . I also want to nurse my grandchildren – let at least the current state be preserved .
I am in the process of registering a disability, but I do not know whether they will give it or not: all doctors speak differently. I need it: I do not work, but at least the allowance will be like that, and the medicines are very expensive. People with disabilities are given pills, but the cheapest, so you never know if they will help or not.
Don’t hold yourself back
Tourette’s syndrome has never prevented me from leading an ordinary life. I got married at nineteen, gave birth at twenty. I broke up with my first husband, I had another one – we did not sign, and now I have been living with a third for thirteen years .
I graduated from college, worked in different places – recently as a nanny. The employers didn’t tell me anything , I didn’t come, saying: “Hello, I have Tourette’s syndrome.” The only thing is that I somehow worked in a store, and it was very difficult to be in public for thirteen hours . I left, I couldn’t. I even had nowhere to hide, even for a short while, to twitch and calm down. In the evening I came home, and everything intensified. When I already realized that no one sees me, or that the closest ones see me, then I came off to the fullest and twitched in all directions. Now, due to the fact that the obsessive movements are almost constant, I can not work.
Of course, I see that people notice my peculiarity, they look at me in surprise . But almost no one ever asked me about it, did not say that something was ” wrong” with me or I was “not like that.” I feel comfortable with people. Once I went to the dacha in an electric train, sat opposite a woman. We have all the time twitching leg, and I touched her neighbor. She finally looked at me so reproachfully , I told her : “Sorry, do not pay attention, I have tics.” And she didn’t look anymore – but she didn’t sit down, and we rode calmly together.
For a while I worked as a cleaner. Once at a dinner a woman asked me: “Lena, why are you blinking your eyes, jerking your head?” Everyone immediately besieged her: ” Why are you asking such questions, why?” She replied: “No, no, I am not with malice. It’s just that my relative does the same, maybe there is some kind of treatment? ” I said that I myself did not know anything – at that time I really did not know anything about Tourette’s syndrome. On it all and over.
Now I only blink strongly
in certain situations – for example, when I see someone drinking tea with a spoon in a mug, or when sharp objects are standing, not lying
I have a friend, she says to me: “Len, well, here you are walking down the street, you want to twitch – well , twitch! In the end, these people see you in the first and last time in life. Don’t hold yourself back. ” At home, they even treat my syndrome with humor. I can not raise my hands – they immediately start twitching. When I wash the dishes and want to put the plate on the dryer, I press my hands to me from shoulder to elbow and move only part below the elbow. When my son sees this, he calls me Lolo the penguin. If you constantly worry that I am not like that, life will be completely unbearable.
When we got together with my current husband, he did not know about my peculiarity. There was no such thing that we sat down and I told him: “You know, I have such a syndrome.” But later he began to notice my movements, although he did not say anything. And I myself began to ask that he, for example, not leave a spoon in a glass. Now he even tells me that he began to notice the same people on the street . He is very supportive of me. I have it once said: “When I start to pull, maybe you unpleasant to look?” He says: “I just don’t notice it. I like to treat you to the very beginning, and attitude. ” I see that this is indeed the case. He also tries to help, fulfills all my requests. Sometimes in the evening I come home, sit down and cry, so this will get it all – and he pities me. I can lead myself completely calmly with him and not hide. Nothing scared him away – we live as we live.
There I had a friend: We were together with the birth, I thought it was a very close friend, nowhere near. Then she got married. Every time when I come to him in the visit, I blinked, and her husband, winking at me. Once I told her: “You explain to him that I am not making eyes, but I have a peculiarity of health.” Later I realized that he did it on purpose. It didn’t bother me , at that moment we completely stopped communicating. I just realized that I don’t need these people in my life . If a person in adulthood, the age of reason mimicking another already aware of the situation, it is not talking about the fact that I am poor, and about the fact that people are likely ill-mannered or not very smart.
After I found out about the diagnosis, I wanted to communicate with the same people, find out how they live, how they are treated. I started looking for groups on the VKontakte network for people with Tourette’s syndrome – we periodically talk. Recently, the mother of a boy with the same peculiarity wrote to me . The woman was in a difficult condition: it seemed that her world had collapsed – she was so worried, afraid of how her son would continue to live. I hope I helped her – at least she said she felt better. I wrote to her: “Yes, we are. Such as they are, and should live with it. You don’t have to worry, pull your hair out – better support your child. “
I can send, but not because I have Tourette’s syndrome
If we talk about stereotypes about Tourette, then I almost never came across them. More often than not, people simply do not know about this disorder. And if they do, they think that the syndrome is expressed in the fact that a person swears uncontrollably – even doctors believe in it. Recently I did a cardiogram, the doctor saw the diagnosis in the card and said so sympathetically: “How are you, poor, living? You can also send someone. ” I answer: “No, of course I can send, but not because I have Tourette’s syndrome.” In fact, coprolalia is a rare manifestation, and I don’t have it.
There was an even stranger case. I was in the hospital with panic attacks: I woke up at night, it seemed to me that I was dying – I did not understand where the floor was, where the ceiling was, I felt sick. They called an ambulance, they put me in the neurology department. Then the diagnosis was not yet confirmed to me , but I tried to find a specialist who would know at least something . I tell the doctor, they say, this and that, it twitches me, maybe it’s Tourette’s syndrome? To which, in response, the neurologist asked: “What is this?” I, of course, understand that this is not her specialization, but the neurological disease should be heard.
There are people around me who sincerely treat me and accept me for who I am. Those who were needed remained nearby, the rest dropped out. You are proud of yourself because you have to overcome difficulties associated with Tourette’s syndrome that other people do not face. If you think about why me, it drives you into a blues, but I am an optimist in life. We are all very different, and have many features have – physical or mental. It’s hard for all of us. If I was born without Tourette’s syndrome, it would not be me, but a different person. And I am happy that I was born. I want to live and enjoy life.