Parkinson's disease is one of the most common degenerative neurological diseases, and its prevalence increases with age in the general population. When an eighty-five-year-old man is diagnosed with the disease during a visit to a family doctor due to tremors, stiffness and parkinsonian signs that accompany his general state of health, the diagnosis usually does not cause him much anxiety, a strong emotional reaction or extreme changes in his behavior. Most of the time, at this age the person does not see himself as healthy and Parkinson's disease usually joins a number of other health problems, which he has learned to live with and adapt to. On the other hand, when Parkinson's disease breaks out at a young age, in the late forties or even earlier, the mental reaction to the disease is completely different, since the meaning of the disease for the person and his family members is far-reaching, and people fear that the future they expected is about to change. In this article I will try to show that, although there are necessary changes due to the disease, it is and is possible to live well with Parkinson's and see it as an opportunity for growth and personal fulfillment. 

 What are the stages of dealing with Parkinson's disease?

The denial stage

Unlike a diagnosis of cancer or an injury due to a car accident, the transition from being a healthy person to a person with Parkinson's disease is gradual, accompanied by hints, small incidents and signs that most of us prefer not to see. Studies show that when a person reached the stage where he was diagnosed with Parkinson's disease, between 60% and 80% of the dopamine-producing cells in the substantia nigra had already died. In my experience, it seems that most patients already feel that something is not right in the year or two before the diagnosis of the disease, but they prefer not to check the causes and hope that maybe it will pass. During my work I met people whose hand was shaking for a whole year before they went to see a doctor. This phase in dealing with Parkinson's disease (and other degenerative diseases) is called the denial phase, and it continues until the patient can no longer ignore his condition. This stage sometimes happens due to falls that resulted in medical hospitalization, objects falling from the hands or environmental reactions to changes in movement or behavior.

resistance phase
The moment when a person is told that they have a disease is a turning point in their life, and for most of them it is a moment they will never forget. There are people who work and function well, business owners or people who work in liberal professions, people who at the age of 50-60 are at the peak of their career, who have influence and involvement in their environment. For these people, receiving the diagnosis was experienced as a real trauma, as if their whole world had fallen on them; The disease is seen as something that may at once take away everything they have worked for over the years of their lives - the expectations for themselves and their family, both the present and the future, the work, the livelihood, the friends, their place in the family, the respect, but the scariest of all - the independence. The fear of being dependent on others and needing assistance in all daily activities is a very significant fear, and independent people have a particularly hard time coming to terms with it. At this stage, the patient begins to assess his condition and realizes that there is a gap between his expectations regarding the future and between the disease and its consequences. This situation creates a lot of resistance from the patient to receiving the diagnosis, and tries to change the evil of the deed and invalidate it. The patient begins the "Schopenig" process: he wanders from neurologist to neurologist, spends considerable sums of money on second and third opinions, when every doctor who diagnoses Parkinson's disease belongs to the side of the "bad guys" and loses his authority, while the cautious doctors (who may be afraid of the patient's reaction to the diagnosis ) leaving him in uncertainty, in a vacuum of knowledge, which does not give him rest. This stage in the patient's coping is called the resistance stage, and is characterized by a strong emotional reaction, mood changes, anger and existential questions ("Why me? Why now?").
Digestion and internalization

From a psychological point of view, it is, in fact, a process of digestion and internalization: "I was a healthy person, or relatively healthy, and now I have a disease that is progressing." Much of the psychological work at this stage involves, what we do every day, when we have to swallow something. Just chew it. When we chew, the front teeth cut the food, the back teeth grind it, and only then do we swallow it. Even in psychological therapy, you start to cut and grind, and at the end you also swallow and digest (and this, of course, if the treatment is successful...). The disease initially looks like a big, black lump that you can't deal with, you can't contain it, and Parkinson's is definitely an example of a steak or a particularly tough piece of meat!!!

Psychological treatment
In talking with patients at this stage, the main work is focused on listening, containing the distress and allowing the personality to reorganize and return to a position of control. In treatment, the psychologist is a support point that can hold the pain and distress, bear the weight carried by the patient and allow the soul time to rest and recover, to organize itself and gather new forces. After this mental ventilation, the patient can begin to see more things outside his inner world. He can start looking out. So he sees that the disease does progress, but not from one day to the next, and not from one week to the next. From my experience in the psychological treatment of patients and their family members, I see that people learn to cut, grind, swallow and digest large parts of the disease, and learn to see that not everything is black, big and threatening. In fact, a process of "mourning" is carried out, or parting with the fantasy of a life of complete health and physical independence until 120. This process allows the patient to leave the "healthy" chapter of his life behind him, to move on to a new chapter and another, to recognize that he will indeed be able to fulfill most of his ambitions and his wishes, although not exactly at the pace or in the way he had originally planned.

the investigation phase
This is the magic that happens to people in adapting to major changes in their lives; They raise their heads, look ahead, and start thinking what's next, "How do I get out of this?". This stage is the turning point in dealing with the disease, and is the transition to the investigation period. The investigation period is characterized by the patient's need to be his own doctor, take care of his body and mind and take responsibility for his physical and mental condition. He finds a neurologist he trusts, he makes sure to take his medication on time, perform periodic tests and attend check-ups. Beyond the psychological treatment I spoke about briefly, it is important to note here that Parkinson's is a disease that affects not only movement, but can also greatly burden the patient's mood and feelings. Sometimes these are biological reactions and not necessarily psychological, meaning that they can result from a lack of dopamine and serotonin in the brain, and not necessarily from a mental reaction to being sick with a disease. That is why it is important to treat moods in Parkinson's just like the motor aspects of the disease. Psychological and psychiatric follow-up is the right way to take responsibility for the disease and one must actively take care of the need to feel well!! We need to get out of the stigma, that drug treatment for mood is necessarily a label that says "we are not fit to take care of our souls anymore". Our brain is made of body tissue, which is identical in composition to the rest of the body's tissues, and just as iron is missing, we supplement it, so it is also important to do, when we lack neurotransmitters in the brain related to mood.

Commitment stage
The patient often turns to the association and knows people from whom he can receive support and good advice; He checks the existing treatment methods and the appropriate drugs to feel the best and the most active. At this stage there are people who will take on a challenge - to maintain a diet, physical activity, an active social and family life and will try to cultivate the quality of their life in the best possible way and for as long as possible. I see couples who spend more hours together, travel more abroad, spend more time with family and strengthen the social circles in the community. There are patients who manage to maintain this for many years. This is the stage of commitment; that is, the commitment to maintaining a maximal quality of life despite the disease. People who accept the necessary changes as a result of the disease, but manage to fulfill their dreams and wishes, set an example for all patients with Parkinson's disease (and patients with other diseases), that even in the face of difficulty it is possible and possible to cope with great success.

By: Omer Porat, a psychologist at the clinic for movement disorders at Sheba Hospital, Tel Hashomer, and a specialist in rehabilitation psychology, "Reot" Medical Center.
Omer Porat Hano is a master's degree graduate in clinical rehabilitation psychology at Bar-Ilan University, and a doctoral student in psychology at Haifa University in the field of Parkinson's disease and behavior.
You can write to Omar by email: poporat@gmail.com