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It started with a slight tremor of the hand. Well, the man is still on the run, chasing – work, home, duties. She didn’t have time to deal with such a small thing. She hadn’t expected this little detail to turn her world upside down. Doctors diagnosed it with Parkinson’s disease.
– I was 35 then – recalls Barbara Stramecka-Czerw from Kędzierzyn-Koźle. – When I heard the diagnosis, I didn’t ask myself the question “God, why me”? I was wondering what this disease was for, what is God’s plan for me?
She returned to work as a school counselor from the hospital. She knocked on the door of the school where she worked and told about the diagnosis. – The disease could not be hidden. In order to find myself in a new situation, I learned to talk about it. Then I made one thing for myself. I will not lock myself in four walls.
The adolescents saw their teacher’s illness, especially as the symptoms worsened. Side effects of medications appeared. Movements of the arms, legs and head that are beyond your control. Barbara took part in an educational lesson on disability and intolerance. – I touched my head and said, “I haven’t changed here.” I touched my heart and said: «I have not changed here either. Only the body does not listen to me ».
Words hurt a lot sometimes
Years later, her colleagues admitted to Barbara that they had followed her with their eyes more than once when she descended the stairs. They were afraid that he would fall off them in a moment.
– I was swimming – this is how Barbara describes her uncoordinated movements.
She had to take ever greater doses of drugs. Imbalances were also a side effect. – I will not forget how the old man commented: ‘So young and already drunk’. It still hurts me.
This disease is often socially disabling. A kind of trivial matter, like having tea with friends. – More than once I pretended to drink. I lifted the glass to my mouth and felt my hands tremble and in a moment I would just start pouring out its contents. I was ashamed of it. I put the glass down on the table.
Fortunately, Parkinson did not take away her smile. – Sometimes they call this disease “stone face disease”. We have no control over the facial muscles, it looks as if it has frozen. After 15 years of illness, I shouldn’t smile anymore. Doctors say that Parkinson’s attacks at a younger age have a more aggressive form, and as you can see, I not only smile but do a lot of other things as well.
Hand in hand with depression
Parasitic tremor is the second less common name for Parkinson’s disease. The first, perhaps less scary sounding, comes from the name of the English doctor who first recognized and described this disease of the central nervous system. Parkinson’s is incurable, but its progress can be delayed with medication and a healthy lifestyle. It is caused by the death of nerve cells in a part of the brain called the black matter. It is there that neurons secrete dopamine, a chemical messenger responsible for the transmission of signals between the black matter and the striated body in the forebrain. Nerve impulses transmitted from the substantia nigra are responsible for the voluntary work of muscles and motor coordination. The disturbance in the production of dopamine leads to the characteristic trembling of the limbs, muscle stiffness. Proper rehabilitation is very important. Doctors emphasize that its lack leads to infirmity and further to social exclusion. Depression is the comorbid disease of Parkinson’s. Barbara admits that she also struggled with this problem.
Imagine this suffering
In Poland, Parkinson’s affects approx. 60-80 thousand. people. That’s a lot, and yet you can’t see them on the streets.
– They close up with four walls, because the public looks at them with reluctance – says Tomasz Cymer, president of the Association for People with Parkinson’s Disease and Brain Degeneration Diseases “Ostoja” in Krakow.
– And a real drama is born when a lonely person is sick – adds Cymer. – Imagine him suffering. He cannot prepare a meal or just drink regular tea.
The association is the only one in Poland that still continues the “Parkinson behind closed doors” program. “Ostoja” was established in 2012 on the initiative of patients and doctors of the Krakow Center of Clinical Neurology. They want to free the sick from the closed world of their homes, but this is not the only direction of their actions.
– Somehow, pharmacies have recently lacked Madopar, the basic drug used in therapy. We also know about drugs in the west that are still not introduced to the Polish market. There are too few treatments for implanting electrodes that stimulate the work of the brain. These treatments are rarely reimbursed by the National Health Fund – says Tomasz Cymer.
The president of Ostoja is also affected by this disease. He invites all patients to join the association. – Here you can learn from doctors things that cannot be found in books and that will help.
The most romantic confession
Barbara Stramecka-Czerw was also one of the guests of “Ostoja” in Krakow. She was talking about herself and the book she had recently published. She did not think that the disease would be the driving force behind big changes in her life. The most important ones. – Thanks to the conspiracy of my friends, I met my husband Juliusz.
It was 10 years ago. After years of professional training, he also had health problems. The specter of moving in a wheelchair hangs over him all the time. Barbara admits that when it sparked, she talked frankly with Juliusz. – I told Juliusz about my illness. It was fair.
Julius listened attentively to what Barbara had to say. Barbara remembers his words perfectly well. Juliusz replied very seriously: «Well, if we go for walks together, we will occupy the entire pavement. I am in a wheelchair, and you are waving your arms nearby ».
Barbara admits that it was for her the most romantic confession she ever heard. – Soon it will be our fifth wedding anniversary.
Rehabilitation? Make your dreams come true!
For years, they unknowingly conducted rehabilitation recommended by doctors – movement. Barbara realized her dream of traveling for little money. From distant China to smaller ones with poles, e.g. for Biskupia Kopa.
– There must be a few kilometers a day. It prepared me for the journey of my life – he assures.
A photo from this trip is hanging on the wall – following the route of St. James. He makes one picture of each and hangs it on the wall. However, the most experienced was the journey along the pilgrimage trail. He admits that the trip was “madness”. It was only after she returned that she realized how much she had done. During the week, she and her husband followed the path of St. James, over 120 kilometers. – My legs didn’t hurt. A little back.
The trip was a great spiritual experience for her. – I catch my life by traveling.
It was similar with the publication of the book “Despite Parkinson’s I Am”. For years, she kept records of her illness, although she never thought they would be the size of a book.
– I think it was a form of therapy for me – he says. – And now sometimes the sick call me, write to me. Recently, I had a long talk with a woman who wanted to hear that she was “normal” – she had Parkinson’s. In a chronic disease, the patient wonders what is wrong with me.
According to Barbara, it is not enough to hear from loved ones “get a grip”! She emphasizes that she had and still has a lot of support from her relatives. – Nobody turned from her. I try to cheer others, because despite Parkinson’s – I am.