Berta Inés Arango de Londoño's hands speak. The ring on the right ring says she is married; his spots and wrinkles realize that he is already 80 years old and his fingers, crotched and rigid, are the evidence that his body stopped working 47 years ago, when he was paralyzed.
Like his hands, his legs do not move; They are also unable to support their weight, but that detail was resolved with the help of a wheelchair. He cannot prepare his food, nor serve it, but he is able to dress, clean himself, get into bed at bedtime and use his cell phone and computer. And, although his words get tangled in his mouth and it's hard to understand them, his caregivers always know exactly what he means.
She is taken care of by her husband Jorge, 85, and María, 71, who – more than a maid – is part of the family. This triangle formed about 50 years ago in Bogotá, when Berta Inés was the young mother of three children, she had stopped her career as a social worker to raise them and needed help at home. Then Maria arrived from Condoto, a town located in eastern Colombia, 334 miles from the capital, and began working for the family.RELATED
In July 1971 the life of Berta Inés took a turn. He began to feel that his throat bothered him, he could not swallow and, after a while, he found it difficult to breathe. He called the doctor and he was prescribed Diazepan, a sedative: he thought it was a nervous breakdown.
“I was alone with the children, who were six, three and a year old, I fell asleep for the pills and when I woke up, I could no longer move. I was able to wake up my girl, who was sleeping next to me, they called the doctor and when she arrived, I was already very, very bad. He called an ambulance and they took me to the clinic, ”he recalls.
Four hours later, after a tracheotomy, the only part of his body that could move was the eyelids. He was 32 years old.
Two meetings with Guillain Barré
The cause of the symptoms was Guillain-Barré syndrome (GBS), a disorder characterized by the fact that the immune system attacks itself by mistake and damages parts of the nerves, especially its covering: the myelin sheath. This damage is called demyelination and causes tingling, muscle weakness and loss of muscle function.
Paralysis, in most cases, begins in the legs, spreads to the arms and can reach the nerves of the chest and diaphragm and prevent breathing. There are tests that facilitate diagnosis, such as taking a sample of cerebrospinal fluid from the cord, which was what they did to Berta Inés to find out what she had.
The doctors were confident that the woman's symptoms would be reversible and would return to normal (there was no neurological damage, but mechanical damage) and only recommended rehabilitation. At the present time the treatment would have been another.
“There is a procedure called plasmapheresis, which is when the blood is filtered and all the antibodies that cause inflammation of the nerves are removed. Now patients receive a plasmapheresis and that reduces inflammation, so the paralysis does not become so strong and recovery is faster, ”explains Jorge Hernán Londoño Arango, a doctor who has studied Berta's case closely and that, in addition, is your son.
The patient began to communicate by blinking and then with the help of a board with the alphabet. At six months of the episode she left the hospital, at eight she began to speak again, at one year she got up and at seven she had managed to walk independently and used herself. But on the eve of Christmas 1978 the disorder returned and he did not stand up again.
GBS occurs once in 95% of cases, only between 3% and 7% of those affected suffer two or more episodes, according to the MSPS. Londoño Arango explains that even in severe cases, patients walk again, but in this case there were two determining factors: rehabilitation failed and recurrence.
“When he gave it the second time, he already had a problem of muscular atrophy, so he could not recover completely. Guillain-Barré, although it causes paralysis, can be partial; in my mom's case it was total, the only thing left was a little movement in the fingers and eyelids, ”he says.
The alliance with their caregivers
After the second episode of Guillain-Barré, what Berta most longed for was to resume her life, somehow. He began to read with the help of a lectern and Maria and her husband, who turned the pages of their books. Over time he wrote again, enrolled in Theology at the Javeriana University (at a distance) and 20 years ago they called her to run the "Friends of the limited physicists" foundation in Medellin, where she currently lives (the foundation no longer exists, but it is still common for people with disabilities to go home seeking their advice).
His great goal was to raise his children. The three children did elementary school, high school, became adults and finished their university studies outside Colombia, “and they are excellent professionals. My greatest effort was to always have the feeling that everything was fine, that there were no problems, that we are able to get ahead, ”he recalls. Today the three reside in the United States and visit it frequently.
In the country it was very difficult to get a caregiver in the seventies, and Berta was fortunate to have Maria and Jorge. Between the three a sort of tacit alliance was made and much of what he achieved was thanks to them: “That does not make one. I had the help of my husband and Maria. I have not made that a problem, I do what I can do, I ask for help for what I cannot do. ”
In Colombia it was in 2009 when the figure of the caregiver took legal form with law 33, which defined him as one who is in charge of a dependent person and lends him permanent help, without receiving financial compensation and unable to work. For Maria, the reality was different: since the Londoño Arango family took her in, she has paid her a salary and today she has a private insurance called Health Promoting Entity (EPS).
The EPS has also covered the treatments and medical expenses of Berta Inés; The insurance is part of the pension of her husband, who is an engineer and is retired. 50 years ago there was no health program that would protect people with disabilities in the South American country, today there is the Identification System of Potential Beneficiaries of Social Programs (SISBEN), among which is the affiliation to a subsidized health regime .
“This is an old age,” says the woman about her home. She takes medications to control pressure and diabetes. María is in good health and periodically checks. But Jorge, who used to help him read, is losing his vision and now it is she who reads newspapers, magazines and everything he wants daily.
The three older adults are a family, they take care of each other. They do not know how much time they have left, but Berta Inés says they are prepared for whatever comes: "We all have a very clear concept that we already live life quite well and that we can leave when it touches."