They had polio. They tell about the treatment in the People’s Republic of Poland

Professor Nicholas Hart, known, among others Because he cured British Prime Minister Boris Johnson of COVID-19, he is the author of the sentence eagerly picked up by the media: “COVID-19 is now what polio used to be.” There are many similarities between the two diseases, but while the so-called COVID-19 long tail is widely described, and even many doctors in Poland have not heard of the symptoms of polio survivors.

1. Polio survivors of very young children do not remember their condition, their accounts are mostly based on their parents’ stories
2. Not the best memories related to one of the rehabilitation treatments – the so-called packing
3. Post-polio syndrome occurs in 25-80 percent. people who have suffered from the paralytic form of the disease, and about 20 – 25 thousand had it in Poland. people
4. Do you want to live longer? Make a simple test and find out how!
5. You can find more such stories on the TvoiLokony home page

Polio recalls himself

We have not had polio for over 40 years. Poliomyelitis, or acute widespread childhood paralysis, or Heine-Medin disease is caused by the poliovirus, which, like the SARS-CoV-2 virus, is an RNA type virus. Infected people usually do not have any symptoms or so-called a miscarriage with ailments from the digestive system, fever or headache. In 1 percent infected people have meningitis, and 1-2% of those who are infected have meningitis. a paralytic form, manifested by paralysis of the muscles leading to paresis, motor disability, paralysis or respiratory failure.

The last case of poliomyelitis caused by wild virus was found in Poland in 1984, while in the years 1951-57 there were 1,7-3 thousand people registered. illnesses annually. In 1958, when we were experiencing a polio epidemic, there were 6 deaths. 90 cases and 348 deaths. The cases included in the statistics showed typical neurological symptoms (paralysis or meningitis) and it is only a few percent of the actual number of infected.

And here prof. Hart highlights another overlap with COVID-19: “You may have a mild, moderate or severe form of the disease.” And many patients may develop physical, cognitive and mental disabilities after recovery, which require long-term treatment.

Therefore, prof. Hart warns: “Let’s plan ahead.”

But first it was polio

Most polio survivors do not remember the disease. They were one, one and a half, three, five years old. There are fragments of memories and paresis that remind us of experiences from years ago.

Ryszard Ławrowski remembers nothing, who learned everything about the beginnings of his illness from his parents. When he got infected, he was one year old and had just started walking.

“I was walking and at one point I got down on my knee,” he says. – That’s how it started.

His last surgery was when he reached the age of majority. There were five of them in total – incl. hip surgery, knee surgery, leg lengthening with a metal distractor. This last procedure “stretched” the limb by almost 7 cm.

– When I was 18, I boasted that I spent half my life in a hospital – says Mr. Ryszard. – A total of nine years were spent in hospital, sanatoriums and rehabilitation. At the age of 18, I had my last knee contracture treatment in Świebodzin. I remember that I resigned from going to the swimming competition and spent two months in the hospital. Unfortunately, despite intensive rehabilitation, contracture returns from time to time.

All these operations involved one leg, which is now arm thick and clearly weaker. However, the treatment can be considered successful. Mr. Ryszard started with a wheelchair, then he walked on crutches in an orthopedic apparatus, then he dropped his crutches, and now he walks alone without an apparatus.

“Polio has taught me to fight,” he concludes, “and I don’t think it will deprive me of anything.” For me, even in the wheelchair, there were no architectural barriers, I played football, and because I could not kick, I stood at the goal. I had to practice the pads, because people with this disease often fall over. With my hands terribly blue from bullets, I was racing tree-climbing. Two arms and one good leg were quite enough to make it spin like a monkey.

Ryszard Gola also does not remember the disease. However, the trauma to the white coats remained for a long time, and the sight of the syringe made him always run away. His parents often pulled him out from under the bed or from the wardrobe.

“I developed polio at the age of three,” he says. – One day I just stopped walking. I fell down and my mom took me to the doctor. I was in the hospital for a while, but I have no idea for how long. Then there was rehabilitation. Fortunately, the situation was brought under control and I did not go to sanatoriums. My mother told me that I owe it to the intervention of a great pediatrician, now deceased, prof. dr hab. Wanda Klinowska.

However, in high school, he had his lung capacity measured and found him to be weaker. Polio remembered after graduating from high school, when Mr. Ryszard applied for admission to the Military University of Technology. After careful examination, he had paresis in his left foot, which deprived him of the opportunity to study and perform military service.

– I did not feel paralysis every day – he says – I played volleyball and basketball quite intensively, I practiced athletics.

– I was a 14-month-old child, already walking – says Bożena Zacholska. – Mom noticed that I am starting to lie down and I do not want to walk. For me, polio started with great tears and stress. I was flexing in all directions and screaming incredibly. No swinging in the blanket or entertainment helped, so my mother took me to the hospital.

Ms. Bożena was first examined for meningitis, but soon polio was suspected. She was referred to an infectious diseases hospital. There, a spinal puncture was performed.

– I do not remember the pain, although the puncture was done three times, traces have remained so far – he says. – My mother was with me and she mentioned that the procedure was performed without anesthesia, and I pee because of the pain.

– My entire left body was paralyzed – says Bożena. – After a 2-month stay in the hospital, I left without any paresis, only with underdevelopment of the left heart valve, but it is not a major defect. I function normally, and the slightly crooked mouth is a visible memento of polio.

Bożena’s mother reluctantly recalled her daughter’s illness, we had to literally pull out every detail from her. She couldn’t visit her in the hospital, so she would come to the garden of the detached house next door. The family living there let her into the property, and the nurse showed her little daughter at the window.

– Lying in the ward, I got used to the sisters and when I got home, I didn’t want to approach my mother at all – says Bożena Zacholska. – I looked at her askance, and my mother cried that her own child did not recognize her.

Bożena was left with photos from her stay in the hospital. She stands alone on them, and the nurses show that she is also holding the handrail herself. She once went there to see her medical history, but was told that the records had already been destroyed.

Bożena Janel fell ill at the age of 5.

“Only one memory stuck in my head,” she says. – I am sitting in an ambulance that is leaving my town. Besides, I don’t remember anything. My parents called an ambulance because I had a high fever. I was hospitalized in a serious condition.

When asked what the disease has left behind, Ms Janel replies: – I have always fallen down in my life. I’m not talking about the moments when I got up and dusted myself off, but about the situations that made my condition much worse. My right leg is paralyzed to a large extent because I am moving something there and I am glad to see a muscle twitch. The leg is shorter, I walk in an unusual way. Actually, I was walking, because I have been using crutches for several years. As a result of these falls, the condition of all the joints of the right leg – ankle, knee and hip – deteriorated significantly.

The shorter limb was leveled thanks to elevated shoes. Unfortunately, it was not one of the most comfortable, let alone the most beautiful.

– In my childhood I wore special shoes – recalls Bożena Janel – but when you grow up, you want to be elegant and the shoes are left aside. I started walking normal. Meanwhile, the problems grew over the years, dysfunction of the spine and pelvis, and even the abdominal organs. Aside from the fact that I cannot lean on this leg at all and have never been able to climb stairs, I have now made the decision to get a wheelchair helper.

The right limb refused to obey, and its functions were taken over by the left one, in addition, the muscles responsible for bending, flexing were also overstrained … All this meant that at the moment, even in a sitting position, Bożena has a problem with performing the simplest activities.

– As a girl, I only covered a few meters on foot – she says. – It was hard for me to move. When I lived in a large city, where all means of transport and communication were more available, I worked and commuted to work. Then I moved to a smaller town. I still couldn’t walk, and the shopping had to be done. I revived a bit and became more independent and self-confident when I decided that I had to buy a car at all costs. I have been driving for 30 years and this is what cheers me up the most. At the moment, I have a third car, each one suitably adapted.

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Polio: the shadows and the shadows of rehabilitation

Each polio survivor was intensively rehabilitated during the communist regime. All of them went through the famous institutions of the Polish rehabilitation school established by the Poznań orthopedist prof. Wiktor Dega.

– I remember the sanatorium in Cieplice and the nuns who run it – recalls Ryszard Ławrowski. – But I remember Świebodzin best. I’ve been there three times for a long time, after one and a half years with six-month breaks. I remember an open-air swimming pool and round pools where I learned to swim. Now swimming is my crown discipline, I swim long distances with non-disabled people. I have also been a scuba diver for over 35 years, and my current qualifications allow me to descend over 40 meters.

In the sanatorium in Trzebnica, nurses taking care of children recorded the progress of their charges in special journals. Mrs. Janel remembered a few such notes. They sounded something like this: “Bożenka is smiling today. Bożenka is already sitting, there is a minimal improvement ». Apart from rehabilitation by swimming in sanatoriums, there were also paraffins and water massages, but when asked about treatments, all of them mentioned packing in the first place. Also, this procedure is not associated with fond memories.

– Extremely rough blankets were used and heated to high temperatures – says Bożena Janel. – We were wrapped in these blankets once a day. We looked like babies in wraps. I remember the trauma associated with it. I was scared, I cried, maybe I was screaming that it was burning me.

– The paraffins were also annoying – he adds. – I have a problem with one lower limb, so it was wrapped in foil on which warm liquid paraffin was applied. The pools, on the other hand, were quite a pleasant treatment. Swimming took place throughout the school year and was compulsory.

– When we were children, our rehabilitation was taken care of – sums up Bożena. – There is nothing to compare my current situation to 1962, when as a sick child I could be improved for 10 months, at the same time having care, sleeping, food and school … In the sanatorium in Trzebnica I spent the entire third grade of primary school. Now I’m looking forward to the most ordinary treatments.

Polio survivors have to fend for themselves

The term “post-polio syndrome” (PPS) appeared in the early 80s. It was used to describe the late consequences of acute poliomyelitis infection. Estimates say that it occurs in 25-80 percent. people who have had paralytic polio. We do not know how many PPS patients there are in Poland. However, we have data that show that approx. 20 – 25 thousand. People between 1950 and 60 suffered from paralytic polio, so we assume that some of them may experience post-polio symptoms years later. Additionally, they can occur in those who have undergone a non-paralytic form of the disease.

– I have learned to do massages by myself, exercise myself, go to the swimming pool, go to the gym, ride a bicycle, and sail. I live actively – says Ryszard Ławrowski. – Symptoms of post-polio should be visible now, maybe even something is beginning, but when I experience something, I always fight it myself.

– Colleagues say that I limp on my leg – says Ryszard Gola. – It could have something to do with possible post-polio. I read a lot about the symptoms and as far as I am concerned, I can talk about freezing of the upper and lower limbs.

– I am one of those people who have symptoms of post-polio – says Bożena Janel. – I do not know if I was diagnosed with all paralysis, because now I have problems with hernia and abdominal muscles.

— Nobody knows anything about post-polio, no doctor I know – says Ryszard Ławrowski. – At the moment I am not undergoing treatment, although it bothers me a bit, because the doctors say that they do not know anything about this disease. And I would just like to go to the doctor and do some tests, for example if my muscles are losing weight. A special rehabilitation path would also be useful.

– The doctor writes me a referral for treatments, but I have a queue. I have been waiting for a year or two – Bożena Janel complains. – I feel wronged. 30 years ago I was awarded an invalidity pension. I am currently retired. I have a moderate degree of disability and I am applying for a significant degree, which would guarantee, for example, that I will use the treatments first. Now I am rehabilitating privately.

What does an expert say about post-polio syndrome?

This is how the situation of polio survivors is summed up by prof. dr hab. n. med. Ewa Matyja, co-founder of the Polish POLIO + Association, head of the Department of Neuropathology at the Institute of Experimental and Clinical Medicine of the Polish Academy of Sciences, author of scientific papers on post-polio syndrome:

– All the people presented here were lucky that an acute episode of polio in childhood did not leave negative symptoms in the form of increased paresis or paralysis of flaccid skeletal muscles. Through rehabilitation and orthopedic procedures, the patients regained a significant part of the mobility, lost in the acute period of the disease. So far, most of them do not report symptoms typical of the late sequelae of polio.

However, polio is a chronic disease in which there is a late phase post-polio syndrome (PPS). Sometimes the late effects develop gradually and initially the patient does not pay attention to the next symptoms appearing several dozen years after the acute infection. Another time, the post-polio syndrome strikes unexpectedly, with great force. Existing paresis intensifies, chronic fatigue, muscle and joint pain, fatigue, sleep or breathing disorders appear. Symptoms are nonspecific, subjective and diversebecause they overlap with the already existing neurological deficits, degenerative and overload changes in the osteoarticular system, post-traumatic changes, comorbidities and the natural aging process.

It’s no wonder that polio survivors, concerned about inexplicable muscle “weakness”, generalized fatigue, hypersensitivity to pain, and dramatically deteriorating mobility, seek a doctor to help them. Many of them undoubtedly require constant support and symptomatic treatment under the medical care of doctors of various specialties, physiotherapists, dieticians and psychologists.

Unfortunately, in Poland, the knowledge of the medical community about the late effects of polio is still negligible. The late effects of the disease are usually underestimated or attributed to other medical conditions. Often, polio survivors, due to their old age, are marginalized, included in the geriatric group. The public health system does not have much to offer them. The problem of PPS patients has never been systematically solved, as has been done in Western Europe, the USA or Australia, where the patient can find a “post-polio doctor” with comprehensive interdisciplinary knowledge.

In Poland, polio survivors have not even had the G14 code for post-polio syndrome introduced into the Polish version of the International Statistical Classification of Diseases ICD-10, which the Polish Polio + Association has been unsuccessfully striving for since 2016. A code that has been in use in the English version since 2010 and without which it is difficult for patients to seek proper diagnosis, treatment and benefits from the social insurance pool.

A new version of the ICD -11 is now coming into effect that covers the post-polio syndrome under the code 8B62 (Post polio progressive muscular atrophy). It is not known how soon this version will be implemented in the Polish system of nosological diagnosis, because the ministry has already made a reservation that due to the early stage of works, it is not possible to indicate the date. And Polish polio patients are still waiting.

In the face of the poor condition of our health service, its under-financing, the lack of systemic solutions in the field of comprehensive therapeutic and improvement activities, The polio survivor has to cope on his own. And here education turns out to be very important. On the website of the Polish Polio + Association (postpolio.lublin.pl) you can find both scientific reports and simple advice for polio survivors. How to live with the consequences of the disease, how to minimize symptoms that appear many years after polio, how to deal with progressive disability. Using the knowledge and tips contained here, you can develop an individual model of physical activity.

It must be remembered that PPS develops on the basis of progressive dysfunction of excessively overloaded motor units and the activities undertaken may not lead to their permanent damage. You need to skilfully read the signals sent by the body, which through pain or weakness warns against excessive overstrain, alerts you to the need for rest needed for regeneration. An educated polio patient knows the course of his disease and its consequences, therefore he will know best to what extent the increasing symptoms entitle him to diagnose the post-polio syndrome. However, a doctor is required to confirm a medical diagnosis of PPS.

So far, there is no pharmacological treatment to reduce or eliminate the symptoms of PPS. An appropriate lifestyle modification plays a decisive role. Because it is worth saving what is left of motor neurons and skeletal muscles that have been excessively depleted over the years. Planning exercise and rest, introducing solutions aimed at saving energy, a balanced diet, using equipment that reduces the load on muscles and joints. These simple rules may help to slow the progression of the disease. In the case of a syndrome consisting of such a variety of symptoms, a rational rehabilitation and physical therapy program should be defined by a neurologist or orthopedist. In the absence of a physician, a person with post-polio symptoms who knows how to dose the effort not to exceed the muscle fatigue barrier can instruct the physiotherapist himself. Of course, if he has such a physiotherapist, because not everyone can afford rehabilitation treatment in private clinics.

We will not find a post-polio doctor, especially now that the COVID-19 pandemic is changing priorities in the health care system. There are fewer and fewer of those who fell ill in childhood, because they are older people, 60 and 70 years old and more today. In the country on the Vistula River, old veterans who won the fight against an acute episode of polio – a disease whose effects are felt throughout life – have become invisible, invisible, almost “transparent” for the Polish health system.

Nobody remembers the words of Professor Wiktor Dega, the founder of the Polish school of comprehensive rehabilitation: “It is inhuman to save a person’s life and then leave him alone …”.

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