Interview with Ing. Romana Skála-Rosenbaum, chairwoman of the Parkinson-Help Association, o. s. What is the mission of your association? What are its goals? When I became ill, I, like many other patients, started looking for different information and found that there is very little available in Czech about Parkinson's disease. When I then received a disability pension and stopped being active on the labor market, I began to think what I could do for people with the same disease as I have and who were certainly looking for the same information as I was. We began by launching the website www.parkinson-help.cz, which is currently probably the only comprehensive source of information on Parkinson's disease in the Czech language. This was one intention—and maybe a successful one: the website has recorded 41 519 page views of individual pages since October 2012 and has 1500 unique visitors per month. Our vision is to create an advisory and information center for patients, their loved ones, and everyone else who is interested in Parkinson's disease for various reasons. And with this goes hand in hand our mission: to break the stigmas that are still, in our society, still firmly rooted in connection with Parkinson's disease.
What stigmas do you mean? They are linked to the manifestations of the disease. When people in our society hear "Parkinson", most people imagine an old, trembling man who cannot feed himself. Few, however, know that you can get Parkinson's disease even when you are only thirty. Because of symptoms accompanying the disease, people also think that we are demented, but our brain still works the same. Our involuntary movements then lead some people to the assumption that we are under the influence of drugs or that we are alcoholics.
Does your association consist only of people with Parkinson's disease? The association was founded in 2012 by two so-called "young onset" patients, that is, people who became ill before the age of forty. However, one healthy female colleague is also with us. Currently, volunteers from among patients as well as healthy people work with us.
You yourself got Parkinson's as a young woman. What did that mean for you in the first weeks and months? What changed for you? I am forty-five now, and I have been living with the disease for over fourteen years. I learned my diagnosis at thirty-one after my second childbirth. But the first symptoms had already made themselves known when I was twenty-eight; after my first childbirth I had certain problems with movement. At that time, however, it was not classified as Parkinson's disease, but as a stroke. For a year I took blood-thinning medication. Correct and timely diagnosis, especially in younger patients, is not straightforward and requires a neurologist who really knows Parkinson's disease. When I learned the true diagnosis G-20, Parkinson's disease, at thirty-one, in the first days I cried terribly and my main feeling was shame. I was terribly ashamed that I had Parkinson's disease. I told myself: how is it possible that I can get a disease of old age. For about ten years I kept it hidden from my surroundings, acquaintances, and friends. They could see that something was wrong with me, and they themselves asked me whether I used drugs because I was strange. For me, it was more acceptable to say that I used drugs than to say I had Parkinson's disease. But at the very beginning of the illness, it still seemed to me that it was not so terrible, because the medication kept the disease within certain limits and the symptoms were not that visible. Over time, though, the medication is no longer enough; you keep adding it and adding more, and symptoms also increase, so eventually you realize this disease is truly frightening and affects not only the physical state of a person, but also the mental state, that is, the psyche—for example, depression is added. You realize that there is no escape from the disease.
How is your family accepting it? My family supports me. The children are used to the fact that I am ill, and they also see that the disease has some progression—they see changes in my mobility and changes in my mental state. As for my parents, everyone, of course, has certain hopes for their child and gives them the best they can, so they do not expect such a diagnosis and it is very difficult to come to terms with it.
In your essays you use terms that are probably not fully understandable for most people, for example "off." Can you explain them? People with Parkinson's frequently use the terms "on" and "off," which mean good and poor mobility. Life for a person with Parkinson's is therefore distinguished between the time when they are mobile, that is "on" and hardly recognizable as a patient, and the time when they are stiff—"switched off," that is, "off." In this state you cannot move at all: in a shop you cannot take out your wallet, you can barely speak when you are in bed, you cannot turn. These severe states cannot be prevented, and you never know how intense they will be or how long they will last. A person with Parkinson's can therefore be stiff for several minutes, but also for several hours. These states can occur several times a day; it is really a sine wave, up and down. Medicines are used against this, but with passing years the drops become increasingly larger and faster.
Can a person with Parkinson's or those around them prepare for these states in some way? Are there symptoms that they are approaching? At the start of the disease I did not have these states at all. Later I could recognize that they would come, for example, after four hours, and I could take medication, but now, after fourteen years, these states are very unexpected and the time between noticing that they are coming and their onset is very short. So you have very little time to prepare, and you also cannot always take medication, for example due to the risk of overdose or due to contraindications. What has helped in recent years, however, is deep brain stimulation—DBS, which is basically brain surgery that balances "on" and "off" states and at the same time makes it possible to take fewer medicines. But it is a demanding procedure performed while fully conscious, only with local anesthesia because communication with the patient by the doctor is necessary. Incidentally, on March 27 the Czech Republic celebrated fifteen years since the first brain stimulation surgery was performed.
And what does "waxy expression" mean? As for "waxy expression," it is said that a person with Parkinson's has a so-called "poker face," the expression of a poker player. The face loses any facial expression and emits no emotions. For example, my children kept asking me for a long time: "Mom, are you angry? Did we do something wrong?" The problem is that people with Parkinson's have poor articulation, they are harder to understand, and when facial expression disappears over time, communication with them becomes difficult.
Rhythm and music help people with Parkinson's. What is their advantage? People with Parkinson's have a problem with "freezing" of movement, and anything that helps them change the rhythm of movement is good. So the patient can focus on a rhythm or music they like, and this helps them to become mobile again. Therefore, for several years there have been exercise sessions with music, so-called "Parkinson's dance." This helps very much. The paradox is that when a person with Parkinson's "freezes," they cannot walk, and you ask them to step over a foot they then step it over because they concentrate on this step. So there are various tricks for regaining movement.
How can people who are in frequent or regular contact with people with Parkinson's help them? If we are talking about family, for example, do not do this or that for the person with Parkinson's. Their intellect remains the same, so rather wait until they ask for help themselves. Families often make the mistake of treating someone with Parkinson's as helpless and doing everything for them that they would otherwise do themselves. If there is something they truly cannot do, help above all by creating conditions so they can do these things themselves—for example, install various handles, adapt the apartment so they can move in it without help. Remove, for example, glass tables and display cabinets, anything that could be knocked over.
And what about professional caregivers, for example in social service facilities? I think the current situation is not really ideal, because in the Czech Republic there is no specific professional training for caregivers for Parkinson's disease. In various institutional facilities, whether senior homes or various day-treatment wards, of course we have people with Parkinson's, but not tools and knowledge of how to behave toward them. For example, caregivers may not know that people with Parkinson's have swallowing problems and therefore need to eat slowly, drink through a straw... I have visited several social service facilities where people with Parkinson's also live, and I saw that even very basic things are missing, such as railings or plastic seats in bathrooms—these are very important things for people with Parkinson's. A healthy person does not even notice this, and not even the architect who built such a building. A huge problem for people with Parkinson's is also the transition from linoleum to tiles or another surface, various steps, rises and drops in floor level...
Are you considering offering any specialized educational programs? We are slowly finishing the preparation of the project "Žiju s parkinsonem." It is about interactive lectures from the perspective of patients. They are not about medication and medical issues, but rather will be about symptoms of the disease and their management. They will also include video clips and discussion. We will offer the lectures both online and in person to anyone interested. We are starting to cooperate also with community planning.
And at the end: What development would you, when it comes to attitudes toward people with Parkinson's, like to see? Where should Czech society end up? At present, it would be enough for me if Parkinson's disease were spoken about in public as if it were any other condition. If it were not taboo. Lately, for example, there has been a start in talking about breast cancer, about autism, or multiple sclerosis, but we still remain silent about Parkinson's disease. If this were to be broken, stigmas would begin to break down and people would speak about patients, about people who cannot affect their illness in any way. That would be enough for me. I think that once this barrier is broken in public, various "doors" would open on their own and people would no longer look at us as something strange.
(This article was published in the journal Sociální služby, in issue 4/2013)
Asociace poskytovatelů sociálních služeb ČR is an independent association of direct providers of social services, with the development of providers and raising their level as its core goal.
Professional journal Sociální služby - 4/2013
The professional monthly journal Sociální služby is the most widely distributed periodical in the field of social services in the Czech Republic. Its publisher is the Asociace poskytovatelů sociálních služeb České republiky (APSS ČR), the largest professional organization bringing together providers of all types and forms of social services in the Czech Republic. Its current membership base consists of more than 720 organizations, which means over 1600 registered services.
The journal Sociální služby was founded in 2009 through the transformation of the previous APSS ČR Newsletter. It is published ten times a year on 36-48 A4 pages in a print run of 3,500-4,000 copies for approximately 16,000 readers, including providers, commissioners, and users of social services, representatives of public administration, students, and university educators in both the Czech Republic and Slovakia.
More information can be obtained on the websites http://www.socialnisluzby.eu and http://www.apsscr.cz.
Orders for member organizations of APSS ČR are handled directly by the publisher or editorial office at: Kotnovská 137, 390 05 Tábor, Czech Republic, tel./fax: +420 381 213 332, mobile + 420 606 751 156 or +420 606 832 551, e-mail: redakce@apsscr.cz.