Youthful silhouette, blonde hair and expressive eyes. This is the first thing that catches the eye when we look at Paweł Gąska - a journalist by profession, and privately a man who has been struggling with an unpredictable and incurable disease for ten years, which is MS - multiple sclerosis.

He diagnosed himself -MSmeaningmultiple sclerosisbecause the doctors he saw had other ideas about his malaise. It all started with iritis, which is one of the common symptoms of the disease. But this did not convince either the ophthalmologist or the neurologist to do deeper research. Arthritis, degeneration of the spine - this was the first medical diagnosis. Then another idea emerged - myasthenia gravis, a disease characterized by constant fatigue and significant weakness in skeletal muscles. - Even the information that my brother suffers from MS did not lead doctors to the right track - says Paweł. - Two scleroses in one family? It was impossible, they said, and for five years I was treated for various ailments, of course to no avail. And in the world, the family of everyone with MS is under neurological care. We don't.

Finally some diagnosis: - brain tumor or MS

Four years ago Paweł suffered from facial muscles paralysis. He drooped his eyelid, and there was a grimace on his face that looked like the Joker smile in a Batman comic. The neurologist he found didn't beat around the bush, "It's multiple sclerosis or a brain tumor," he blurted out and wrote a referral to the hospital. He was received without delay. After the research, it turned out that Paweł has MS. With joy, he hugged the doctor. He looked at Paweł with a strange face, and when he heard that it was better to have MS than a brain tumor, he just smiled. - At that time, I naively believed that living with MS would not be so terrible - says Paweł. - After all, my brother had been ill for 15 years and he was managing somehow. I will be too. But the reality turned out to be different. First of all, I did not look at my brother's life every day, because I have not lived in the family house for years. And he himself spoke little about the hardships of the disease. He was a little less capable, he could see worse, but he functioned. I quickly found out that it is not that simple. None of the doctors spoke to Paweł. Nobody explained what the disease was, how it would beshe acted, how to live with her, how to heal her, what are the chances for the future. Reality screeched. There was a diagnosis, but one could only dream of treatment. The list of people waiting for the drug was long, and Paweł was at the far end of the line. He was 35 at the time, but he also found out that he was too old for treatment with interferon, and that he still looks good, so he does not meet the criteria that the National He alth Fund has defined for patients who are reimbursed for treatment. "You're too depressed to be treated with interferon," said one of the doctors at the hospital. - I don't see a chance for you.

Doctors refused me, I have to save myself

- I experienced my first conscious episode of the disease shortly after leaving the hospital - recalls Paweł. - I lost the use of my legs and arms, and I couldn't see anything. I was lying in bed, trying to keep my dignity. I was fed steroids, which allowed me to get out of bed after 2 weeks. The worst seemed to be over. But the disease did not let go. She struck another blow on the street. Paweł fell on the pavement. He gathered himself with the help of passers-by. He went to his doctor right away, but she found it coincidental that you couldn't have two relapses in such a short space of time. Again, a dose of steroids and finally qualification for a two-year treatment with glatiaramer acetate, a drug that reduces the number of subsequent relapses. - Two years have flown once or twice - says Paweł. - The doctor said that she would not extend my treatment because I had not been treated with interferon before. A two-year, very expensive treatment at the expense of the state went down the drain. What to do next? But that was of no interest to anyone but me. I parted ways with my doctor and hospital, to put it mildly, in disagreement. I have been treating myself on my own for two years. I get the drug in the form of a donation from the manufacturer, and I am privately looked after by a doctor who has the time and patience to answer my questions. Once a year I go to a sanatorium, where I have, among others, cryotherapy treatments. Every day I exercise on a stationary bike and the so-called oars.

I can't go hiking with my son anymore

Every day Paweł races against time. He is very diligent in fighting for himself to delay the moment when he will have to sit in a wheelchair or will not be able to get out of bed. - SM takes away dreams, verifies life plans, locks a man in an ever tighter circle of helplessness - says Paweł. - I used to go hiking in the mountains with my son every year. It's over. We liked to wander around the nooks and crannies of Krakow. It's over. I turned from being an active person to a passive and waiting lame who in many situations requires the help of other people. I don't know how long I'll keep it fully operational. My illness is a sentence. Nobody knowsonly when it's done, but waiting is hard. It doesn't mean that I gave up on everything.

Multiple sclerosis imposed a certain lifestyle on me

Paweł has a second disability group, but still works as a journalist. The disease imposes limitations, but the employer understands the needs of the sick person. Paweł has a longer vacation, works shorter and gets financial assistance every year. "I've had a period of great resignation behind me," he says. - I fell into a mental depression and, frankly, I wanted to give up. Fortunately, there was a group of people who were not indifferent to my fate. They mobilized me to act, to fight for myself. Of course, it was not without losses. I bitterly remember situations when the list of friends and acquaintances began to shorten. Besides, my optimism that MS is a better disease than a brain tumor has passed. When you fall in the street or stagger walking and people think you are drunk, forget the words to name common objects, if you can't put together a sensible sentence, make spelling mistakes and typos - you start to doubt. The disease imposed a certain lifestyle on Paweł. Before he leaves the house, he must perform activities that will arm him with strength for the rest of the day. He tries to control the disease, but knows exactly who is dealing the cards in this duo. SM is still in the top - it decides when you can work and when you need to rest, when to go for a walk, and when to lie idle.

Worth knowing

SM in numbers

  • There are about 2.5 million people sick in the world, including about 500,000 in Europe.
  • MS is the most common disease of the central nervous system in young people.
  • MS is diagnosed between the ages of 20 and 40, but more and more often also in people under the age of 18 and in children (the youngest diagnosed with MS were several months old).
  • Women get sick more often: out of 10 people with MS 6 are women.
  • There are approx. 40 thousand people in Poland. patients with MS (one sick person for 1000 he althy people).
  • Every second person in a wheelchair has MS.
  • In Poland, approx. 75 percent patients retire less than 2 years after being diagnosed with MS.

If not for my loved ones, I would have given up a long time ago

For a long time, Paweł hid from his 16-year-old son Gawel, which he is sick of. When he was weakening, he explained that his spine hurt. But the boy had figured out the truth himself. Today she looks after her father. And when Beata, Paweł's wife, is not at home, she prepares meals and serves tea. Despite many domestic and little manly duties, Gaweł sets the bar high for himself. The best proof is a certificate fromred stripe. - I admire my wife and son - reveals Paweł. - I don't know if I would find in myself as much patience and determination as they have. Caring for a disabled person, often dependent on others, can be troublesome and burdensome. I know very well that the disease affects their lives. They endure my mood swings, ups and downs with patience. I can be furious, impatient, moody. The disease brought us closer together. Now we are more open to each other, more curious about ourselves than before. Beata supports me at every moment, she is always close, which is extremely valuable. Had it not been for her, I would have probably given up a long time ago. I am disabled and therefore - to some extent - the whole family. Despite this, my relatives did not give up on me. Paweł openly admits that he is often afraid. More recently, it was an outright panicky fear of a wheelchair. Today it has been replaced by the fear of losing sight that is getting worse.

You have to fight for yourself and independence every day

- I am afraid of losing my independence the most - he confesses. - When a person cannot perform simple activities and handle himself, he loses his dignity. He is stripped of intimacy. It is subordinated to the environment, its will, wants or dislikes. I don't know how long I will go until I can work. Throughout the civilized world, people with MS live like diabetics. They take medications that delay subsequent flares and are independent. In Poland, we are "non-prognostic" patients, ie patients in whom it is not worth investing public money. There is no point in treating us, because none of us will be anyway. Paul is not ashamed of his illness. Her head is high, but she knows people who won't even admit to MS. "I'm not guilty of my illness," she says. - It happened. I have to accept it. But it's also true that part of society thinks disease is a punishment for something. As the disease was severe, the sins were greater. It is better not to deal with them. Nobody will say it directly, but with his actions he makes it clear that he does not accept your illness or being different. Better to step back so you don't have to help. And yet it is enough to be. Every incurable disease requires a sharp look at your situation. If you look the truth in the eye, there is less disappointment, suffering, pain and fear. This allows you to prepare for changes and limitations, but above all to fight for yourself and for independence on a daily basis. Gather your strength to make every day meaningful.

What is Multiple Sclerosis?

It is a disease of the central nervous system, which consists of the brain and spinal cord. It develops when the myelin, the substance that surrounds everyone, is damagednerve fiber. In a he althy body, myelin protects the nerve fibers and helps them transmit information throughout the central nervous system. If this cover is damaged, the information arrives slower, is distorted or the transmission is completely blocked. The name MS - multiple sclerosis (from Latin sclerosis multiplex) means numerous hard foci that arise in the central nervous system. The development of the disease is not influenced in any way by lifestyle. There is also no certain evidence that it is hereditary, although recent studies show that the disease is caused by a combination of genetic and environmental factors. It is also said that the farther we live from the equator, the greater the likelihood of developing MS, which may be confirmed by the huge number of cases in Scandinavian countries. MS is not contagious. There are three forms of the disease:

  • Relapsing-remitting MS : symptoms last for days, weeks, or months and then partially or completely disappear. A relapse occurs when the immune system starts attacking more nerve fibers in the brain or spinal cord. Inflammation then develops and, even without medication, gradually fades away. This is called remission, which may last several months or even years. About 20 percent of people suffer from this form of MS. sick.
  • Secondary progressive MSis diagnosed when the condition does not improve after another relapse for six months. Statistically, 65 percent people with relapsing-remitting MS develop secondary progressive disease after an average of 15 years.
  • Primary progressive MSis a rare form of the disease that affects 10-15% of patients. sick people, usually after 40 years of age. The difference is that only the myelin sheath in the spinal cord is damaged. The first sign is usually gradual difficulty in walking, often referred to as difficulty walking. However, this does not mean that other ailments cannot occur.

How to recognize a disease?

No two people get sick in the same way. Not all ailments always appear. Most often observed:

  • sensory problems: numbness, tingling or tingling hands and feet,
  • vision problems: blurred or double vision, temporary loss of the ability to see in one eye due to optic neuritis,
  • fatigue: an overwhelming feeling of powerlessness that makes any physical or mental activity almost impossible,
  • dizziness and headaches,
  • loss of muscle strength and dexterity, problems with balance and coordination of movements, stiffness,tension and contractions in specific muscle groups,
  • bowel and bladder problems: urinary incontinence and constipation,
  • cognitive problems: learning difficulties, focusing on the text, forgetting e.g. names,
  • speech problems: broken word endings, chanted speech.

Therapy relieves the course of the disease

There are no drugs that effectively treat MS. However, there are those that significantly inhibit the progress of the disease. These are immunomodulating drugs. Their task is to modify the work of the immune system. Such therapy significantly reduces the number of exacerbations of the disease. The administration of immunomodulating drugs is considered to be the gold standard in the treatment of MS because early treatment allows patients to live normally. Unfortunately, not all patients in Poland have access to modern treatment. In order to have a chance of reimbursement of interferon treatment, the patient must meet certain criteria, estimated by points set by the National He alth Fund. These criteria are: age, duration of the disease, number of relapses to date, type of symptoms. Currently, only about 8 percent. among all patients with MS in Poland, it is covered by immunomodulating treatment, reimbursed by the National He alth Fund. In most European Union countries, treatment is provided to approx. 30% of patients, and in the USA - approx. 45%. Poland ranks second to last among European countries in terms of access to therapy.

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