Living with Parkinson's doesn't have to be sad, but it's one of those diseases that doesn't show symptoms for a long time. Creeps. He comes as softly as if on tiptoe, but takes something every day. At first, you don't notice anything, because what can be disturbing is that you don't remember where the keys are, or you go to the kitchen again and again. Only later do you start to worry …

Life with Parkinson's disease- Jadwiga Pawłowska-Machajek learns about her in September 2009. She is only 44 years old, has four children and a husband growing up. This is the moment when Jadwiga thought she would have more time for herself and her husband. There were supposed to be journeys, joy, tasting life. However, someone or something, or maybe blind luck - planned a different future.

- We were disturbed by the strange slowdown of my wife - recalls Wojciech Machajek. - There is weakness on the left side of the body. The daily activities, which usually took her about half an hour, dragged on forever. The wife couldn't decide whether to leave now or in a moment. Everything was suspended, fuzzy. And yet, with four children in the house, there is always a rush.

First disturbing signals

Blood tests showed nothing wrong. But a doctor friend, who had not seen Jadwiga for a long time, noticed that something had changed in her. After several consultations with neurologists, Jadwiga went to the hospital for examination.

- I heard the diagnosis in the elevator full of people - says Wojtek. The doctor, ignoring the circumstances, asked if anyone in our family had Parkinson's disease. I was speechless. After a while, I replied that I did not. - I also found out about my disease in a rather unusual way - says Jadwiga. - I changed into pajamas behind the screen, and the nurses freely commented on my condition: "Look, so young, four children, here is parkinson." And I knew about this disease only that Pope John Paul II suffered from it.

Quality of life with Parkinson's improves treatment

Her condition has improved significantly. She went back to work. Every day she traveled 20 km by car to the School and Education Center she was driving. The onset of Parkinson's disease is often referred to as the "honeymoon" because with well-chosen medications, you can function normally. But after 5-6 years the sick person has totake more and more medications, he loses his fitness and has to undergo intensive rehabilitation.

- We didn't realize it. We now know that rehabilitation should be introduced immediately after the diagnosis is made, says Wojtek. - It is a disease where you gradually lose control of all your muscles. The weakening facial muscles change her expression - she is without facial expressions, like a mask. The white handkerchief that we remember in the hand of Pope John Paul II is a common sight among patients, because most of them have drooling. - But even more troublesome is the lack of saliva in the mouth - adds Jadwiga. - Some people's speech also deteriorates. They speak less and less clearly, ever softer. I do not have it, because I sang in a choir all my life, I was a teacher and my speech apparatus is well developed.

Worth knowing

There is good news!

From May 1, 2022, infusion therapy for advanced Parkinson's disease is reimbursed under the drug program. Patients can receive free levodopa / carbidopa gel. The drug is administered as an enteral infusion using a special pump. This is a great opportunity to extend and improve the quality of life of patients who did not respond to drug treatment or could not have an implanted brain stimulator.

Parkinson's rehabilitation

An excellent training for patients with parkinson's is … tai-chi. It not only teaches how to maintain balance, but also moves all muscle groups. It is also an excellent exercise for the brain, because you need to concentrate well to do the exercise properly.

- I use herbal mixtures prepared especially for me by the Chinese in Krakow. Every day my professor visits the clinic in Ghent (Belgium), and comes to Krakow once a month. I have been drinking these herbs for two years and I am convinced that they help me.

Jadwiga sometimes freezes in the middle of a sentence, as if she is wondering what to say. She knows what she wanted to say, but parkinson won't let it. Fortunately, Wojtek is always with her, who can finish each sentence.

It is a great success that Jadwiga has been taking low doses of the drug for two years and her condition is stable. - It is also influenced by the fact that he has a purpose in life. Five years ago, we started the Parkinson's Foundation. This is not a full-time job - we are at work all the time, because there is a lot to be done. Wojtek grew a beard and promised to cut it off only when patients who no longer respond to oral medications or could not take them receive support from the National He alth Fund. It is about the reimbursement of a drug called duodopa, which can be reimbursed for only 25 people in Polandadministered directly into the small intestine, and apomorphine for 60 people, which is administered subcutaneously. The deep brain stimulation currently proposed in such cases - due to age or dementia - is not for all patients. The biggest problem is the lack of access to modern therapies. For example, when the muscles of the esophagus weaken, swallowing medications becomes a huge problem. In the world, in such situations, tablets are replaced with patches, but in Poland they are not reimbursed, and the average person cannot afford to buy them, because it costs several thousand zlotys a month.

First symptoms of Parkinson's disease

Most of us don't know what might be signaling it. Jadwiga always had a weak sense of smell, and after giving birth to her fourth child, she lost it altogether. Years later, she found out that this was the first symptom of a developing disease. It is similar with chronic constipation - they also precede other, more obvious symptoms. Anything can happen in this disease. The drugs that patients are taking have side effects, such as nightmares. There are people who fell into shopaholism, sex addiction, took loans in every bank they encountered. Most people with parkinson's suffer from depression. Often they and their relatives are not aware of it.

About 600 people with Parkinson's disease live in Lublin, where the Machajków live. Many are in good shape and could attend free rehabilitation activities offered by the Foundation.

- They don't come - says Jadwiga. - We often practice in a group of 3 or 4 people. They are very happy after the class, but they don't come to the next one. There are also those who sit in front of the TV and say to everyone: "I'm sick, leave me alone". Sometimes it is like that with me too. I want to change something, but I don't know how to go about it. Parkinson decides what I will do. We live in a triangle. In the morning I want to go to a concert in the evening, and then it turns out that I can't do it. But I try, I fight.

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