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In the famous movie “The Butterfly and the Suit”, the creators showed what the life of a patient suffering from closure syndrome can look like. A conscious and conscious man lives in a completely paralyzed body, and his only possibility of expressing his reaction and contact with the world is the blinking eyelid. Closure syndrome is a very rare disease in which 90% die within four months. patients. The disease was defeated by Richard Marsh, who told about his experiences in the book.
- Closure syndrome is a disease that results from damage to the brainstem
- The patient remains completely paralyzed, with no possibility of contact with the world, despite maintaining awareness and efficient senses of sight or hearing
- The biographical film “The Butterfly and the Suit” tells the story of the fight against Jean-Dominique Bauby’s disease, who published a book while in this state. He died 10 days after it was published
- American Richard Marsh is one of the few people who overcame the disease and returned to fitness. The question of how the patient recovered remains unexplained
- You can find more such stories on the TvoiLokony home page
The life of Jean-Dominique Bauby, the protagonist of The Butterfly and The Suit, changed completely after a stroke. He showed up with a closure syndrome. Bauby retained his full capacity to think, but due to the paralysis of nearly all muscles, he was unable to move. The only way he could contact his surroundings was by moving his left eyelid, and he could move his head slightly and grunt. The film shows how the protagonist, by means of blinking, communicated to the assistant information about the letters he has in mind. This is how he wrote the book. The movie tells a true story. Bauby lived two years with the closure syndrome, he died 10 days after the book was published.
“All I could do when I woke up was blink my eyes”
He also told his story in the book Richard Marsh, except that he could have written it himself. A 60-year-old policeman and teacher who fell into confinement syndrome after a stroke in May 2009 is one of the few survivors of an incurable disease.
“I had full cognitive and physical awareness” Marsh said in an interview with The Guardian three years after his illness. «But almost complete paralysis of almost all the muscles in my body. All I could do when I woke up in the ICU was blink my eyes, »he recalled. «I could think and listen to people, but I couldn’t speak or move. Doctors would just stand at the foot of the bed and talk as if I wasn’t in the room. I just wanted to scream Hey guys, I’m still here! But there was no way to tell anyone about it. “
Richard Marsh watched helplessly from his hospital bed as the doctors asked his wife Lili if they should turn off the life support equipment.
The first sign that Marsh was recovering was finger twitchingthat spread over his hand and arm. It remains a mystery why he has recovered while most of the victims of the closure team die.
Four months and nine days later, he was released from the hospital. In 2012, The Guardian wrote: «Today he recovered 95 percent. its functionality; he goes to the gym every day, cooks meals for his family, and last month he bought a bicycle to ride in the Napa Valley, California, where he lives ».
In 2014, Marsh, along with Jeff Hudson, published a book in which he described his story. In it, he introduced the families of patients to the difficult subject of the confinement syndrome. The book entitled “Proof of Life” was published in Poland in 2015.
Closure syndrome – what is this disease?
Closure syndrome locked-in syndrome) to state of complete paralysis almost all skeletal muscles. It is caused by damage to the brain stem. The ability to blink the eyelids and move the eyes is preserved, the patient hears, sees, associates and remembers. He is quite conscious and retains his pre-disease intellectual abilities. Contrary to vegetative states, the higher structures of the brain remain fully functional.
People with such brainstem injuries initially remain in a coma and require artificial respiration, then wake up and regain full consciousness, but appear to be vegetative patients to those around them.
Closure syndrome is usually the result of a brain injury, stroke, cardiovascular disease, drug overdose.
90 percent patients die within the first four months of brain damage. Treatment comes down to providing comfort, proper care, nutritional support and the prevention of systemic complicationssuch as respiratory infections. Partial recovery of muscle control depends primarily on the cause, but recovery is usually impossible.
With good care, the patient can live for several dozen years
Studies have shown that the diagnosis of occlusion syndrome takes more than 2,5 months on average, and in more than half of the cases it is the family, not the doctor, who first notices that the patient is aware. The closure syndrome affects about 1 percent. stroke survivors.
Once a patient with occlusion syndrome becomes medically stable and receives appropriate care, his life expectancy can increase up to several dozen years. Nowadays, computer technologies are used that allow patients to control their environment and communicate with it.
“Healthy people and doctors sometimes assume that the quality of life of a patient with closure syndrome is so low that it is not worth living”, write the authors of one of the scientific publications on the disease, including Steven Laureys, a prominent Belgian neurologist. ‘On the contrary, patients with chronic occlusion syndrome tend to self-report significant quality of life, and their need for euthanasia is surprisingly rare,’ the researchers conclude.
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