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Yael Friedler - Parkinson's: "I chose life"
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Parkinson's disease gradually affects various functions, and contrary to what is thought, it does not only affect the elderly. Dr. Yael Friedler, who has been suffering from the disease for over a decade, tells about the struggle
By: Nagoha Sperling, zap doctors reporter, 05/06/14
Parkinson's disease gradually impairs the various functions of its patients, making it difficult for them to carry out daily activities. The price that the disease exacts from the patients and their families is high. Despite this, it is possible to live in the shadow of the disease, and despite all the difficulties to manage to deal with its injuries. The secret lies in a conscious choice to manage the disease and prevent it from managing the patients.
Dr. Yael Friedler, a Parkinson's patient for over ten years, talks about her dealings with the disease and the ways to deal with the enormous difficulties it puts in her way. Yael Friedler describes how she "chose life". And what about you?
What is Parkinson's disease?
"This is an unfashionable disease at all. When someone hears Parkinson's, they immediately imagine an old person, shaking all over, mumbling, confused, having trouble speaking and moving, and drooling from his mouth. On the one hand, this image is far from reality: there are young Parkinson's patients and many of them look like ordinary people, with the manifestations of the disease different from what is assumed. On the other hand, the image reveals the difficulties associated with the disease. The reason for this image involves the difficulties that this disease poses to its patients. Difficulties every day. Slowly and gradually the person loses more and more abilities, loses more parts of himself, his identity, his functioning and his world. The present is difficult And the past is burdensome, because you always remember what you were, and the future threatens, because you know that everything will get worse."
What are the significant difficulties facing Parkinson's patients?
"The difficulties are many and varied. Let's start with the fact that it is difficult to be sick: it is difficult to be sick with a chronic disease and it is even more difficult to be sick with a progressive chronic disease. We patients must get used to the fact that we are running long distances and cope accordingly. The transition from healthy to sick does happen in the blink of an eye, but completion takes time.
"It is difficult to accept the fact that the disease has been detected in you and that from today you will be labeled, feel and deal with what a sick person is forced to deal with. I did not believe and did not imagine that at the age of fifty, in the middle of life, I would begin to learn about medical concepts and terms from the world of rehabilitation. But it happens and slowly you become more dependent - Dependent on medication and dependent on help from others. Over time you lose more and more abilities and the muscle systems are damaged one after the other. The disease can include difficulties in speaking, breathing, seeing and swallowing. Tasks that previously seemed trivial to you become difficult to the point of being impossible.
"Furthermore, it is a deceptive disease. I have been sick for over 10 years and now I have a perspective on the disease. It develops gradually and after ten years you understand the meaning of this description. At the beginning, after the diagnosis, you feel like a human being. You don't understand why They told you that you are sick. Then, at the stops along the way, you lose more and more abilities. A Parkinson's patient learns about the nature and meaning of the disease according to his abilities in its various stages. Heeled shoes, long gone, yes, even those with a 4 cm heel. No shoes with laces, no open at the back, no knee-high boots, and what's left, wide, flat shoes - we called them "Golda shoes". And today -, comfortable shoes. Who said comfort and beauty go hand in hand? And what about the makeup and the zipper and the shave and the buttons. Dressing strictly means leaving the house at noon, after an hour or two of preparations. In general, many times, we patients, being in the company of "healthy" people, feel frustrated, denied and different.
"Another difficulty arises from the fact that the course of the disease is unpredictable, not only over time, but also on a daily basis. I always say that Parkinson's patients are like Cinderellas. They have a limited time to act, function, communicate, live, smile - and when the gong sounds that heralds midnight, they run home. So with us patients, midnight comes in the middle of the day. Our functional abilities change. We function and everything is fine for a few hours and then someone suddenly turned off our switch. The element of surprise is the main factor in the "event". We don't know when we will go from the ON state to the OFF state It happens suddenly, without prior warning, which makes it difficult for us to plan the next few hours and/or the next day, complete tasks, and commit to one event or another.
Image of a disease of the elderly
As mentioned, the image according to which only old people get the disease is wrong. 10% of Parkinson's patients are aged 35-50. The other patients are not necessarily eighty years old. Getting sick at the age of 60-70 is no picnic either. This realization that even though you planned to do more and accomplish more and you feel at the peak of your power - and suddenly someone changes your fate is a difficult realization."
Another difficulty that can be noted is the dependence, says Dr. Friedler. The very fact that you are dependent on others: also makes it very difficult to deal with the disease."
How is it possible to live a full life, despite the difficulties associated with Parkinson's?
"I chose to begin by describing the difficulties so that people would understand what a Parkinson's patient faces, not to alarm. My goal is to strengthen and not to weaken. I want the readers, especially the patients among them, to understand what the difficulties and challenges are facing them - and waiting for them. After the patients look in the mirror - and become aware of their condition and difficulties They face it, and come to terms with reality and with the parts of the disease, which cannot be controlled, they concentrate on what can be changed. After understanding the difficulties, the anger about the disease and the change that follows it, one can come to terms with the belief that one can live with Parkinson's. One can travel, meet friends , going to movies and plays, doing sports and even continuing to work. There are many and serious difficulties, but it is possible to live and even live well. Awareness of the difficulties allows us to free ourselves and examine how, despite their existence, we patients will work to make the most of life - as much as possible."
So how do you do it? What is the formula that you yourself apply in your life?
"First, be aware of the difficulties. As I said: this is the first step on the way to choosing life. Second, it is important to know what you are facing. To understand exactly what the disease is and what its consequences are, what the treatment is and what the future holds for you. In every war, you must study the enemy and that is the only way to defeat him . Personally, when I understood the disease, the way it works and how it 'feels', I created mechanisms that would help me function despite its existence and make it easier for me. This is how I reduced the control of the disease over me and increased my control over my life and what happens to me."
What are those mechanisms that help to function, when suffering from Parkinson's disease?
"First, physical activity:
In the past, almost every patient who suffered from physical difficulties would be told: 'Rest.' Today it is exactly the opposite: 'move', despite the difficulties, as much as possible. Studies prove that having regular and effective physical activity, especially aerobic activity, contributes greatly to dealing with the disease and may even slow down and delay its development; It helps release endorphins and improves mood; It contributes to flexibility, posture, the ability to move, balance and the general feeling. Do as much sport as possible regularly and don't be afraid of looking ridiculous."
"Secondly, a mechanism of support:
Every Parkinson's patient needs a support network. It can be at the professional level and include treatments from the field of mental health, in the form of conversations (dynamic therapy) and drug treatments. It can also be a patient support group. In this context, the Parkinson's Association in Israel is very helpful. It is a warm home for patients and their families. The association provides a lot of information about the disease and ways to deal with it, provides activities, classes, workshops and trainings. Integrating into the association's activities, joining a support group and/or individual mental therapy are, for me, a must for every patient. Each according to what suits him."
"Third, comfort and help:
It is important to complete as quickly as possible the need for help from spouses, children, friends, professionals. We have arranged help for you, help with the physical aspects and help with the mental aspects, if necessary. The difficulty with loneliness may in many cases be more difficult than the motor difficulty. In my opinion, the best and most recommended is the help of a family member. Some don't like it, or unfortunately, don't have that option. In these cases, get help. Ensure that you can rely on someone who will allow you to function and fulfill your needs. Organize your living environment so that it is comfortable and equipped and do everything possible to facilitate your daily functioning."
Do you have any other advice for Parkinson's patients?
"Develop a sense of humor. This is an excellent means of alleviating pain (also physical, but mainly mental). Do not be ashamed of the disease and the condition - and do everything possible to make the most of life."
And finally, do you have any advice or a message for the healthy population as well? Mainly, around her attitude to the patient population?
"It is important to develop tolerance and understanding towards the patients. We must make this separation, between a person's expressive abilities, between "how he looks and how he sounds" and his intellectual and emotional abilities. Behind every trembling and stammering patient is a soul that feels exactly as before and must be treated as a person , when the duty to interact with the disabled is all of us - as a society".[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row]
