The disease proved to be very strong and began to destroy her

Let's talk today about a difficult situation for you. Your wife Hedwig, whom I met many years ago, when she was still fit and in good health. Though already diagnosed with Parkinson's disease. Let's start with the important thing i.e. how many years have passed since the diagnosis?

This September will be 15 years. On the other hand, knowing a lot about Parkinson's disease now, I can see that there were already the first symptoms of the disease a year earlier.

Did you see anything? What were the symptoms? Did you notice it behaving differently somehow?

I was the one who came up with the idea that something was going on, because I saw that my wife was saving her left hand. And that hand became tender. I started to ask her, if she was reaching the bus stop, but the bus was leaving, would she be able to run? Hedwig told me: you know, the brain would probably give the order, while I don't know if I would be able to run.

So it suddenly appeared?

It appeared slowly. Then there was lumbar pain. We thought it was after childbirth, because we have four children. Jurek, our youngest son, was 8 years old when the diagnosis was made. We went to a fellow cardiologist. This was back in the days when he could do blood tests on cito. The results were quick, but there was nothing alarming in them. On the other hand, he noticed and said that he hadn't seen his wife in a long time and her face seemed strange to him, i.e. not very mobile, so mask-like. "I'll get you an appointment with a neurologist". - he said. Well, and he made an appointment for his wife to see a fellow neurologist at the regional hospital in Lublin to see Dr. Jacek Gawlowicz. He didn't specialize in Parkinson's disease, while he probably already knew it was the disease, but didn't want us to get upset. That's why he said his boss deals with such "slowdowns." Because in his wife's case, such a slowdown had already begun. What used to take her a quarter of an hour, now took an hour. And she was constantly looking for something. She couldn't find, etc. These slowdowns were dealt with by Dr. Hasiec. He was on leave at the time. They already knew on the first day that it was Parkinson's disease.

I was with you five years ago. At that time we were preparing a book together. One of its elements was an interview with Hedwig. And she was in excellent condition at the time, but she was already stuttering while talking, which annoyed her terribly. That is, she was aware of her own weaknesses, and at the same time it annoyed her that she couldn't deal with them. And what is it like today? Only five years have passed.

Well, yes, but 6 years ago, i.e., before your visit to Lublin, we were in Krakow, and there my wife did not qualify for either DBS, duodopa or apomorphine, i.e., for these advanced methods of supporting the patient in Parkinson's disease. And this was because dementia and dementia were already appearing. And this could have caused these conditions to worsen. After that, it just got worse and worse. We had problems despite daily rehabilitation. We used various methods like yoga, tai chi, rehabilitation, dance, physiotherapy, massages, neurologist (a lady came to the house and practiced with Hedwig), etc. Parkinson's disease, however, proved to be very strong and began to destroy her. In contrast, the culmination of the condition was in January of this year, when my wife got up at night to go to the bathroom, fell over and broke her hip bone.

What condition is it in now?

After this fracture, his wife was taken to the hospital. There she was fitted with a hip endoprosthesis. Later, due to the fact that she walked little, there were problems with hydration of the body. There were problems with the kidneys, and when pushing the stones that had appeared there, sepsis set in. It was dramatic, because there was septic shock. Fortunately, the doctors, for which they are to be commended, at the regional hospital in Lublin, brought Jadwiga out. After being discharged from the hospital, she developed a pulmonary embolism a few days later. Again to the hospital for cardiology. Again, two weeks of lying down and care. After returning home, the kidney problems began again 10 days later.

And today?

And today, my wife is already being fed with the help of PEG's. Because we can't provide her with enough calories to rebuild her body a little and hydrate her properly.

How old is he?

He is 58 years old. At the moment, when he speaks to us, we have to listen a lot. She has trouble walking and with her hands, with associating situations.

You take care of and look after your wife. A foundation was also created to show everyone what the problems are for people with Parkinson's disease, to diagnose it earlier, because it's important, and to make sure patients have access to treatment. What do you feel? Do you feel rage, anger that this is happening, that maybe not enough has been done?

You can always say you didn't do enough. Maybe something else should have been done. On the other hand, there is always such a feeling at the beginning, when there is a diagnosis, I hear from many people that yes, others actually go through this disease very hard, but we will manage. The more so because when the foundation was established (Jadwiga founded it, the founder and first president) we met all the specialists in Poland who deal with Parkinson's disease, Professors Slawek, Koziorowski. It seemed to us that something would happen during that time that this disease could be treated. The Foundation, and we in it were very involved, won infusion treatments. Then changes in drug programs for infusions. My wife, on the other hand, was not given the benefit of what we fought so hard for for many years. And this is the biggest paradox. But it turns out that there are quite a few people in my wife's family who have problems with brain diseases.

And how did your children react to that first moment when they learned of their mother's illness?

They were depressed. They didn't understand very much. I remember getting a call from the younger daughter's teacher at school, saying that her daughter was crying because she was afraid her mother might die. They didn't really understand what the disease was about. So we gathered the children and started talking to them, explaining. And later when the foundation was established, they already knew very well what the disease was about. Now they work for the foundation or cooperate with it, because it's easier when you don't have to explain to anyone what duodopa or apomorphine is, or who Professor Slawek is.

And did anyone support you, help you? Did you need support and not get it? Did you care more about having some close people around you, or was there some kind of systemic response, like being able to pay for a nurse, for physiotherapy, or take advantage of some kind of reimbursement? Is this somehow organized at all in Poland?

No, it's not organized. I am supported by our children. We didn't have outside help. Rather, it was the foundation that helped. We organized twice-weekly rehabilitation exercises in Naleczow, for which we raised funds for the patients. No one paid for them, neither the caregivers nor the patients.

So were you replacing our state a bit?

We substituted for the state, because it's a bit like that in Poland that patient organizations, big, medium and small, which we are, substitute for the state in many things. On the other hand, rehabilitation on the National Health Fund is quite rare, not too frequent. Besides, you have to find rehabilitators, physiotherapists who know Parkinson's disease, and there are few of those, so as not to hurt the patients. So that's the way it is. On the other hand, we have been working on systemic changes. Comprehensive, coordinated care for Parkinson's disease has been developed. And that was last year (February, March, April, May). In May it was ready. We did it with the Health Technology Assessment Agency. The agency sent the study to the Ministry of Health, but it has remained in the desk of the Ministry of Health ever since. Now we are courting, but it's not clear in which drawer it lies.

We are increasingly talking about the fact that those who are caring for their loved one with a chronic illness need support. There is talk of respite care, that these individuals need to organize time just for themselves. What would you say to those who have a similar problem to yours, i.e. caring for a loved one who is very seriously ill, devoting 24 hours a day to it? What can't be forgotten? How to cope? Well, because you have to be especially strong.

I am not a good example. I recently realized that I haven't been on vacation for 10 years. Because two or three days is not a vacation to be able to get away from it all. But apparently I either don't know how to do it or somehow it's not given to me. On the other hand, we organized an online survey, to which 215 people responded. For the caregivers surveyed, burnout turned out to be the biggest problem. It turned out that in Poland the sick are cared for mainly by wives and daughters. Once my wife said at some conference that Parkinson's disease is a woman's disease, because either a woman gets sick, or a woman takes care of the sick. And this is true. Caregivers also have their own problems. Their strength is also on the wane, because you have to take care of the sick person 24 hours a day and be alert, because he gets up, and where he goes, so that he doesn't fall over, so that nothing happens. This is really difficult. You have to help with basic living activities such as eating, toileting, washing. On the other hand, respite care is lacking. Maybe in big cities there is. I live in Lublin, where there are no such things. Maybe because cities, towns are just poor. There are other problems there, there are no specialists who can take care of patients with Parkinson's disease. There are no physiotherapists, physical therapists there. There is this problem. Therefore, most often the patient is confined to the house together with his caregiver. I remember when I went to get groceries some time ago, I was gone for half an hour or an hour, I would come back quickly right away, because I was afraid that something like this might happen, which would be dangerous behavior for my wife. Because we've already had such situations where something happened to the stove, the electric kettle, for example. I will not describe in detail, but these were dangerous behaviors. Therefore, you have to be very careful about this.

Thank you so much for this meeting well and for all that the Foundation is doing, which is you at the moment and your children.