The association in the media 2022

Radio North   The "Private Doctor" program    01-04-2-22

An interview with Dr. Ilana Schlesinger, neurology specialist, director of the Institute for Parkinson's Movement Disorders at the Rambam Hospital, about Parkinson's disease: what are the symptoms and prevalence of the disease, is there an increase in morbidity, are young people also sick and how can they be helped to cope. Parkinson Israel Association Helps contestants and family members. The association organizes a conference called Connecting to Technology in the Parkinson's Service.

To listen to the interview click here...


Vint - health and quality of life section 07-04-2-22

"Hug my children without being in pain": 10 chronically ill patients - what is health for me?

For years they have been dealing with a disease that limits them at every step. They know that this will not change, because their illness cannot be cured - but once a year, on World Health Day, they are allowed to dream. Ten Israeli women who suffer from a chronic disease tell about the discovery, the completion, the dealing with the limitations - and what it means for them to be healthy. 

A chronic disease is a serious disease, the one who suffers from it has to suffer from it for years - in fact, for the rest of his life. The diseases can be controlled to a certain extent and are characterized by remissions thanks to treatments, but they cannot be cured, and the patients suffer for them throughout their lives.

Besides the physical symptoms that characterize any disease, chronic diseases affect the patients also in the mental-psychological aspect, since the suffering is reflected in social, family and occupational aspects: a person suffering from a chronic illness sometimes has to leave his job or be absent from it for a long time, which of course affects the continuation of his career. Certain diseases force patients to stay at home most of the time, unable to plan trips and social events. There are diseases that also harm relationships between spouses or between family members. The mental difficulty and coping of the patient, due to the feeling that he is losing control of his life, is extremely difficult, especially when the environment does not always understand him.

On the occasion of World Health Day (7.4), which fell today (Thursday), we asked ten chronically ill patients to share with us what they are going through: the daily feeling that the disease is taking over their lives, and the frustration that their quality of life has been damaged and will never be the same again. They responded and did so with great courage.

Tzipi Shaish: Parkinson's disease

"I was sitting alone at the health insurance fund, I waited patiently for my turn - and boom, Parkinson's" - this is how Tzipi Hash describes the day when she got the news. Parkinson's is a chronic neurological disease that affects various systems in the body. Apart from the drug treatment, a constant investment in physical activity is required to preserve abilities. When we talk about Parkinson's, we usually talk about losses: loss of physical, cognitive abilities, self-image and more. The drugs only treat the symptoms, and the disease accompanies the patient on a daily basis.

"As soon as I left there, a decision came to my mind: this will not be my business card," continues Sheesh. "The disease will not define me. I will face it, do what is required and live my life well. Today, 17 years later, I can say that that intuitive decision was the first step in my tango with Parkinson's that led me to live a full life on the side of everyday difficulty: I discovered artistic abilities that I did not know Because of their existence, I started painting, my works were presented in exhibitions in Israel and abroad, I wrote two children's books, I sculpt in clay and also engage in volunteering and being a social activist."

Shish testifies that her optimism, humor and determination helped her expand her social circles and made it easier for her family members to deal with her being a Parkinson's patient. "When I have difficulty walking, one of my grandchildren reaches out to me and says naturally, 'Grandma, I'm here and you can.' A way of life for me, so health for me is the ability to produce both physical and mental quality of life."

To the full article…


 

Walla site

The association's campaign to promote Parkinson's awareness among young people, under the message:

"I have Parkinson's in my life, but my life is not only Parkinson's"


Voila - health section 

Not just tremors: Parkinson's in young people

It turns out that depression, self-image disorders, decreased sex drive, social isolation, economic harm and even increased drug use are among the common symptoms for those dealing with Parkinson's disease at a young age.

Dr. Meir Kestenbaum

What is Parkinson's disease?

Parkinson's is a neurodegenerative disease caused by the degeneration of nerve cells that contain the chemical mediator dopamine, which is essential for movement. The disease has movement symptoms that include, but are not limited to, tremors, stiffness, slowness and gait disturbances. There are non-motor symptoms that include cognitive changes, sleep disturbances, mood disturbances, anxiety, constipation and sphincter dysregulation. In most patients, the symptoms gradually worsen over the years and cause an increasing limitation in function, and damage to the quality of life.

It is the second most common degenerative neurological disease (after Alzheimer's disease), and affects 2% of the population up to the age of 80. Although the average age of diagnosis is towards the end of the 7th decade of life, it is known that the first symptoms of the disease appear years before the diagnosis, and include a decrease In the sense of smell, constipation, and a sleep disorder manifested by shouting and making wild movements to the point of falling out of bed. In view of the fact that these symptoms are not specific to Parkinson's disease, most patients are evaluated by a neurologist only after the appearance of movement symptoms, such as tremors, slowness and gait disturbances. The movement symptoms are necessary for making a clinical diagnosis of the disease, and appear when the degenerative process of the nerve cells is already progressing.

Young-onset Parkinson's disease is defined as a disease with the onset of movement symptoms under the age of 40. This is about 7% of Parkinson's patients in Israel (about 2,000 patients), out of about 30,000 patients. The young group has unique characteristics and differs from most older Parkinson's patients both in terms of the clinical course of the disease and in terms of the emotional, social and occupational impact on the patients.

How is the disease diagnosed?

A Parkinson's diagnosis requires the presence of a combination of movement symptoms including tremors, slowness, stiffness and gait disturbance. Although the symptoms of the young patients are similar to the older patients, there is a delay in the diagnosis of the young patients. After they come to be evaluated by a neurologist, they will be required to come several times until the diagnosis is made. Sometimes there is difficulty for the patient to accept the diagnosis and agree to receive drug treatment.

What are the main symptoms?

In terms of movement symptoms, tremor is the most common symptom in all Parkinson's patients, regardless of the age of onset of the disease. However, in the group of young patients there is a higher incidence of muscle stiffness and dystonia (involuntary contraction of muscles). Also, there is a higher frequency of fluctuations in the movement state of the patients with the phenomenon of dyskinesias (involuntary movements) and OFF states, in which there is a fading of the medicinal effect and a return of the symptoms.

Young Parkinson's patients live an average of 30 years with the symptoms of the disease, causing a shortening of about 15 years of life (Photo: ShutterStock)

How does the disease manifest itself in young people?

Most studies prove that the rate of progression of motor symptoms is slower in the group of young patients, compared to the older ones. But the frequency of phenomena such as depression, low self-esteem, decreased quality of life, and social and family difficulties is higher. In addition, there is an increased prevalence of drug use.

Young Parkinson's patients live an average of 30 years with the symptoms of the disease, resulting in a shortening of about 15 years of life. In addition, there is a difference in the drug treatment given to patients.

What are the treatment methods?

The disease can be treated with several types of drugs, including drugs that act on the dopamine receptor (dopamine agonists), which have a side effect profile that includes gambling addictions, compulsive buying and compulsive sex. It is important to inform the patients and their family members about the possible side effects of the treatment.

Does genetics play a role?

It is known that genetics play an important role in young Parkinson's patients, and family kinship is identified in approximately 20% of patients in this group. The more family members have the disease, the higher the chance of a genetic mutation. So far, dozens of genetic changes associated with a young disease age have been identified. Among the genetic mutations described is a mutation in the GBA gene, which is common in the Ashkenazi Jewish population and has a relatively rapid disease course, which in addition to the movement disorder also includes cognitive changes.

What are the consequences of the disease on work and the relationship with the family?

In view of the young age of onset, most of the patients are in their working years. The symptoms of the disease gradually impair the ability to perform work, require adjustments and sometimes lead to a stoppage of work which causes economic consequences of a decrease in income and a significant emotional impact on the patient's self-image, social isolation, and a decrease in quality of life. There is a significant need to raise employers' awareness of the limitations that exist due to the disease and to provide emotional support to patients.

Also on the family and social level there is a unique effect on the young patients. Among the challenges that patients face is the need to maintain contact with their spouse in the presence of a chronic illness. In addition, most patients have young children who have to deal with a complex reality where the parent has limitations that impair functioning. It is important to note that the ability to maintain contact with friends who are an important emotional anchor and helps to cope.

Parkinson's and pregnancy

Parkinson's disease does not affect fertility and the chance of getting pregnant. At the same time, it is often necessary to take medication for those dealing with the disease during pregnancy in order to prevent worsening of movement function and quality of life. Of course, it is necessary to stop medications that may harm the fetus and switch to safe medications during pregnancy.

In conclusion

Parkinson's disease in young people is an uncommon phenomenon of a common neurological disease. Raising the awareness of the public and the medical teams to these patients, to their unique characteristics, the drug treatment, the emotional, family and occupational challenges they face will enable a faster diagnosis and the provision of a comprehensive medical and social response that will help improve the quality of life of the patients and their family members.

To the full article…


Walla - Video studio   

The difficulties, the coping and the cure on the way: the CEO of the Parkinson's Association in Israel in an interview

How is Parkinson's disease diagnosed, is it common only among adults and what about a cure? Eyal Levy in a fascinating interview, including the difficult complications, the treatments, the association's activities and the upcoming conference. watch

Parkinson's disease is a chronic incurable disease that damages the brain cells that produce dopamine, which is used to transmit signals from the brain to the central nervous system. Is this a disease that exists only in adults, how can it be treated and will the number of patients double in the future?  Eyal Levy, CEO of the Parkinson's Association in Israel, explains in detail.

"We estimate that there are about 35 Parkinson's patients in Israel, of which about 7,500 are under the age of 55," Levy said. "Furthermore, we estimate that about 150 patients are under the age of 30. We call them contenders, because Parkinson's is a multisystemic, chronic and progressive disease and one can live with it for 30-40 years. The aspiration is that alongside the difficulties there will be a quality life."

How is the disease diagnosed??

"This is a symptomatic diagnosis. Usually tremors on one side and the loss of the sense of smell are some of the symptoms. Over time, movement difficulties also develop. After all, this is a neurological disease that is treated by specialists in movement disorders."

There is an increasing trend in those diagnosed with the disease?

"Studies and articles around the world talk about the fact that by the year 2040 the number of patients in the world will double. The question is why. Medicine is advancing and there are treatments that prevent complications, since usually one does not die from Parkinson's but from the complications. We even see that a stressful lifestyle affects an early onset. In addition, dealing with dangerous substances , such as farmers, laborers and those who deal with dangerous substances are in a risk group for getting Parkinson's disease. There are certainly ways to prevent or reduce the damage, but unfortunately the State of Israel does not invest in increasing public awareness for the prevention of neurological diseases. We are working to address increasing awareness of prevention and it is possible to do it."

How much the patients' routine is affected?

"This is a major crisis. There is great difficulty in movement and there are hours when you are frozen. There are falls and limitations that are developing. Unfortunately, the disease is incurable, but there is drug treatment. Using all kinds of substances, dopamine is returned to the body and there are different effects."

There are supportive treatments?

"It's a disease that can be rehabilitated. Sports activity is one of the most important things and it helps to deal with the disease."

How the association helps?

"We try to give the most up-to-date and new information, and hope that in the next decade they will find a cure for the disease. We manage 20 branches throughout the country and hold weekly activities, we hold physical activity at Zoom with 12 classes as well as individual activities to improve voice and speech. The association even subsidizes rehabilitation activities with the Shiba and Ichilov, for the rehabilitation of speech and swallowing. We hold support workshops for contestants and their families, so that they can come out of the closet and take care of themselves."

Can you tell us about the upcoming conference??

"All Parkinson's sufferers in Israel and their families are invited to come free of charge, and transportation is also available from all parts of the country. The theme of the conference is technology in the service of Parkinson's. The best doctors and experts in movement disorders in Israel will come and tell about the innovations in the field. We will hold workshops for physical activities from all fields, we will hold fascinating discussions and more".

How did you come to head the association??

"My father has Parkinson's disease. He is 85 years old and is still dealing with the disease. When I retired from working in the financial field after 30 years, I decided to give of myself and volunteer to the community. I joined the association and was selected in a tender. I am proud to lead many dozens of volunteers, who every day support those dealing with the disease."

To the full article…


Non-stop radio 103fm 

Podcast: Technology in the treatment of Parkinson's - an interview with Dr. Saar Anis.
On the occasion of International Parkinson's Day, Dr. Saar Anis in a fascinating conversation about the innovations in the treatment of the disease: "We prolong life" • Special podcast.

Although a treatment has not yet been found that cures Parkinson's disease, which greatly affects the quality and lifestyle of its patients, but are there ways to help treat the symptoms of the disease? And is it possible to identify it easily thanks to the meteoric technological progress in the field? Just before the second Israeli Parkinson's conference, 'Connecting to Technology', which is being held in collaboration with the Parkinson's Association in Israel, Dr. Saar Anis, a neurologist and specialist in movement disorders at the Movement Institute in Tel Hashomer, arrived at the 103fm studio. He spoke with Yaniv Morozovsky about the various innovations, which bring quite a bit of news. to each and every one of us.

The Parkinson's Association in Israel has been the address for Parkinson's patients and their families since 1993 and is spread throughout the country with more than 10 branches. Through it, the patients can ease the burden associated with living alongside the disease, and improve the quality of their lives and the lives of those close to them. The association works to represent the interests of Parkinson's patients and their families in front of the authorities and the establishment in Israel, by providing support and information as a supplement to medical treatment. It also works to raise public awareness of the challenges faced by the disease, encouraging research and building as large a community of association members as possible - this is in order to create an impact on the decision makers.

"Parkinson's is a disease of young people"

"The Parkinson's ward is actually a disease that I call a disease of young people," said Dr. Anis at the beginning of his remarks, "Today I am 60-50, which is a young age. We know that this is a disease that breaks out on average around the age of 50, but we know that there is a group in the population even under the age of 40 that is diagnosed with the disease. This is a disease that we see at a variety of ages and especially at young ages when the person is at the peak of their strength. This is not a disease of the old, but of the young."

Dr. Ennis also explained that "the diagnosis of Parkinson's disease is a clinical diagnosis. You go to the doctor and at the end of the appointment he can tell you that it is Parkinson's disease. This is where the technology comes in that allows us to be more confident in our diagnosis and increase the chances of the accuracy of the diagnosis. There is a test today, which I'm not sure the audience and patient community knows about, called brain mapping. In fact, a substance is injected that is absorbed into the brain in the area of ​​dopamine absorption, you can tell by the strength of absorption of the substance. If there is a decrease in absorption, this can direct us to the fact that it is Parkinson's."

How is the test conducted?

"Actually, a radioactive substance is injected that is absorbed into the brain, and then a CT scan is performed. Another brain mapping that is not available in Israel at a clinical level, but only at a research level. In practice, these are quite simple tests, the patients pass them quite easily and they are available in several places in Israel," replied Dr. Anis, noting : "You can't just go, you have to contact a neurologist, preferably an expert in the field, who will recommend the test, and then you have to contact the health insurance fund. Not all health insurance funds approve it immediately and subsidize the test, it is not a cheap test. Those who are interested can contact a neurologist, and if suspicions arise, the test can be performed."

Later, Dr. Anis, a neurologist and specialist in movement disorders, shared what bothers him during the treatment and response to Parkinson's patients: "You receive the test results in the mail. Even today in the diagnosis of diseases such as cancer, even if there is an abnormal pathological answer, there are clearer procedures. The result is usually listed as 'the findings are consistent with Parkinson's disease', and if you do a Google search, the answers are very worrying. They should reach the person on time and under convenient and appropriate conditions. We live in the digital world. It is very difficult not to receive feedback from the net whether you are looking for it or whether it jumps out at you. In my opinion, it is of great importance to mediate this with a specialist doctor in the field."

"I have come across cases where bad mediation causes anxiety" 

According to him, "Parkinson's in a strange way is a degenerative brain disease, but we relatively know how to deal with it, it takes many years with lots of treatments. We know or want to think we know how to manage it. In the end, we all experience health events of this and that during our lives, and I have come across cases where incorrect mediation causes for anxiety. This can lead to poor treatment, so from the first moment the mediation here is important and technology is important. Perhaps we need to think about a more correct way to transfer data."

In the last two years, along with the corona virus, we have come to know how much the development of technology meets us in many areas of life, from teaching classes on Zoom to a virtual meeting with the doctor when we feel ill. Advanced technology has not failed here either, and according to Dr. Anis, the day is not far when we will know how to diagnose movement disorders with technological means. 

"There is today's direction of early detection through technology and even more monitoring of the symptoms," explained Dr. Anis, and elaborated: "There are already today all kinds of wearable sensors, such as a smart watch, various sensors, etc. that are worn on our bodies and know how to monitor our mobility At any given moment, day and night. These sensors have been talked about for quite a few years now, how significant their role is in the life of a Parkinson's patient. As a doctor, I see the patient once every six months and actually receive an opinion from him that is based on the last week, two weeks, month, but if he had a sensor he actually checks and lets me know what the status is and also adjusts the medication. I think there is room for this field as well, we are still far from there, but the technology exists."

"The world has advanced in this field, we have virtual meetings"

As for accompanying technology in the treatment and rehabilitation process of Parkinson's patients, he claimed: "Technology occupies a very large part of today's Parkinson's treatment. Already in communication between a doctor and patient or between a patient and other therapists. During the Corona period, we saw, not only in Parkinson's disease, the deterioration of patients due to a lack of medical response. The world has progressed tremendously in the field and we have virtual meetings. It's true that it's not the same, but it has advantages. When you see a patient in his natural environment at home, you get a little more indications about him and he doesn't have to go through the difficulty of getting from place to place."

"We know that the technology greatly serves the patients. For over 2 decades, we have been implanting electrodes deep in the brains of Parkinson's patients in advanced stages, which actually improve their symptoms. This thing made a serious revolution in the patients, it is a technology that only gets better. Every year there are several companies and the pacemaker is perfected until So that right now he is starting to learn to receive and sense the brain waves, and according to this we doctors will know more how to pace the brain in a smarter way until the final goal - that he will do it on his own. The pacemaker will sense the brain waves and alone he will pace," said Dr. Anis.

"I believe that in the near future it will be possible to continuously infuse dopamine"

Currently, there are several centers that perform the electrode procedure, but at the same time it is a very common operation and many patients are candidates for it. "There is a complete system in every medical institution that has the surgery, the patient goes through in-depth evaluations to see that he is indeed suitable for the procedure. In Parkinson's, the brain lacks dopamine, and perhaps in the future it will be possible to give it in a pump under the skin. Today there are pumps already on the shelf, but the subcutaneous pump is not for dopamine , is of a similar substance. I believe that in the near future it will be possible to continuously inject dopamine subcutaneously and receive a treatment that is much more continuous and good for the brain, this is also an amazing technology that is going to come in."

"The brain prefers dopamine in a continuous manner, it does not like pulses. Therefore, not only is it convenient, it is also more effective," Dr. Anis sought to explain, clarifying: "It is not only the advanced patients who meet with the technological world, also patients in very advanced stages early stages of the disease. A patient who has just been diagnosed is not a candidate for any surgical procedure, but he wants to receive information. Today there is the Parkinson's Association and you just enter the website and get endless information, films by experts and also access to treatments. Everything is online, these are excellent technological platforms."

Also, Dr. Enis emphasized the importance of sleep in particular for Parkinson's patients: "We know that sleep is often disturbed in the disease. It is of great importance for the doctor to get accurate and reliable measures regarding the patient's sleep and to treat it. During sleep, many cells in the brain go through a process of regeneration and when a person does not sleep, we all know how we feel after 3 hours of sleep. When we are sleep deprived, certain areas of the brain are asleep while we are awake and function is less good." 

One of the technologies that amazes the therapeutic field is the special walkers for patients, because Parkinson's patients are known for the stagnation symptom that prevents them from moving. "On the face of it, after a second or two he succeeds, but it can cause falls. Stagnation is a symptom that we want to deal with. Today there is a treadmill that has a laser line at the bottom, this line makes the patient's brain every time want to take the next step to the line and it is an excellent means of overcoming About stagnation. Or, for example, a treadmill that makes sounds and it's a trigger to take another step, it greatly improves the stagnation."

"There is genetic transmission, especially among Ashkenazim"

The field of genetics is full of mysteries, and also among Parkinson's disease. At the same time, in recent years more and more studies are coming out which show that there may indeed be a genetic influence. Dr. Anis shed some light on this: "We know that there are genetic carriers, especially certain genes among the Ashkenazi population. In fact, those who carry a mutation in these genes are at an increased risk of getting sick compared to the normal population. Therefore, today the whole world is aimed at the invention of treatments based on genetic mutations. We test the patients for carriers because there are clinical studies today that identify the genetic mutation and give a drug that improves the function of the affected gene, with the thought that it might be possible to intervene in the development of the disease and slow it down or even prevent its outbreak in the future."

"There are already studies that are running with drugs and there are some drugs, some of which are antibodies, some of which directly affect the gene, and some of which we inject into the brain. These studies are at an advanced stage and we have seen this in recent years and it is only getting stronger. We understand that there may be people who are not carriers of these mutations, It is possible that they will also be able to benefit from these treatments. This is amazing technology and we are there, soon such studies will enter Israel as well," he added.

"We are talking about a chronic disease that we want to improve"

In addition, Dr. Anis told about another and no less impressive technology in the field: "Use of sound waves - we do this in several places in Israel, but of course it is done in the world. We use ultrasound waves that burn, do not enter the skull, a point in the brain and thus can deal with symptoms such as tremors. As of today, it is not approved in the health basket for Parkinson's patients but only for primary tremor patients, but we are heading in the right direction. It is increasing in the world and it will also reach Israel. It's a game changer. It's not going to cure the disease, but we're talking about a chronic disease that we want to improve."

"We extend life and the quality of life - I'm optimistic"

"The world, medicine and technology as time goes by we manage to better control the symptoms. We prolong life and the quality of life. I am optimistic and this is happening even more in the last decade, and we doctors see great importance and invest a lot of energy in all these technologies," he declared.

At the end of the conversation, Dr. Anis referred to the blessed conference 'Connecting to Technology - the Second Israeli Parkinson's Conference', which will be held on International Parkinson's Day on April 11.04: "This conference is exciting because it allows a meeting that is not a normal meeting in a clinic. Sometimes you see patients who cope in a completely different way when you meet them outside the clinic. I'm really looking forward to it, especially since now for two years we haven't really been able to meet face-to-face."

"I believe in mediation, I think that patients who will be at this conference will be able to meet with the doctors and not only. The knowledge that patients can acquire at such a conference is what is exciting and what is important," concluded Dr. Anis excitedly.

To listen to the podcast click here...


Voila - health section
Parkinson's at 33: This is how our lives changed

On the occasion of International Parkinson's Day, which falls on the 11th of the month, Noa Cohen, an occupational therapist at the rehabilitation center "Ezra Le Marfa" and moderator of the "Forum of family members and caregivers" within the Parkinson's association in Israel, spoke with Galit - the partner of Sagi, a Parkinson's patient who was diagnosed at the age of 33.

Parkinson's is a progressive neurodegenerative disease (progressive degenerative disease of the brain) that changes both motor and cognitive abilities and affects a person's ability to function in his life. This disease mainly affects the elderly (1% of the total population over the age of 60 will be diagnosed with this disease), but not only. The disease also affects young people aged 20-50.

Dealing with Parkinson's at a young age is completely different from dealing with it at a later age. In old age, Parkinson's disease usually joins a number of other health problems. But when the disease breaks out at a young age, the meaning for the person and his family members is far-reaching and there is a heavy fear of the future that is expected to change. A person under the age of 40 has to combine his role as a working person, a full-time parent, a spouse and a person managing his dealings with the disease.

In order to understand a little more the unique challenges faced by a young family in which one of the spouses is diagnosed with the disease, I spoke with Galit Wasserman - Sagi's partner who was diagnosed with Parkinson's when he was 33 years old.

how it all started?

"It was a long process. Three years ago, Sagi noticed that his right hand stopped shaking when he walked. We went to hear the opinions of three neurologists until we received the diagnosis, and we had the feeling that they didn't believe us. The first year of the disease was very difficult mentally. It was hard to accept the fact Shasghia ​​was sick and had to figure out how to manage the disease. We all have an image that we will be beautiful and young forever, and yet we all know that one day we will die and the end will come. But when it happens suddenly at a young age it is really shocking. At 33 you have your whole life ahead of you, you have big dreams And suddenly something happens that destabilizes your future," says Galit.

At young ages, many physical phenomena are associated with stress and mental stress. Most doctors and specialists will not immediately suspect that this is Parkinson's disease, which is not typical for a young age. Therefore, many of the young diagnosed are forced to go through a tedious process during which they have to maintain their belief in themselves - meaning that what they feel is real and tangible.

What helped you and Sage to deal with the diagnosis?

"The first decision we made is that we don't hide the illness, but tell our children and relatives. Even when Sagi was looking for a job, he didn't hide the fact that he was sick in job interviews, but there is no doubt that it was a dilemma. He wondered if they would accept him out of pity or not at all because employers don't They will want to deal with this complexity. The exposure and openness surrounding the disease led to widespread support. We received support from the social worker accompanying us from the movement disorders unit at the Ichilov Hospital. We were helped and are still being helped by the lectures offered by the Parkinson's Association in Israel, especially now that they are on Zoom."

What is the hardest part of dealing with the disease at a young age??

"The biggest difficulty is knowing that you have to deal with the disease all the time. My husband is told that he has to manage the disease and not him, but he just wants to lead a normal life... work and be with the children. He doesn't want to deal with medication and physical therapy all the time and deal with an adult disease. His body is getting weaker with each passing day and his abilities are changing - motor and cognitive."

Has there been a change in the roles that each of you takes on in managing the house?

"There was a change. At first Sagi asked him to take tasks such as money management and shopping off him. Little by little he regained some of the responsibilities, such as managing the bank account. Today it is more difficult for him in activities related to taking care of the baby - diapering and bathing. With the older children it is easier for him."

Have your priorities changed as a result of the illness??

"Yes. There are two things we would never have done without Sagi's diagnosis. The first is that we traveled for three months in the north of the country and abroad. We told ourselves It's now or never. Another decision was that I would stay home to take care of our third child. I was on maternity leave for a whole year. I feel that work is no longer the most important thing - they also need me more and I want to be more present."

What other differences are there between a young patient and an older patient??

"It is more difficult to obtain treatments. When you have Parkinson's at a young age, even when you have a decline in function, you still do not pass the 'threshold' of the coffers and you do not receive all the treatments. Professionals are used to examining Parkinson's in relation to older age and not to younger age. In addition, at young ages if The functional status of the diagnosed person is good, he can go to tests on his own, take medication on his own and more."

In my opinion, as an occupational therapist, this is a very important point. Many times I see that those dealing with the disease, their family members and also the doctors wait until a certain functional or cognitive difficulty is great and only then refer or turn to paramedical treatment. But the right way is to start and get tools as early as possible. Every young person diagnosed with Parkinson's should initially receive a series of physiotherapy treatments, occupational therapy and communication clinics in order to acquire practice tools that will help him maintain his condition over time.

Do you think there is a difference in the coping of families of young patients compared to families of older patients?

"The management of the disease is up to Sagi. I can advise, but in the end it's his. Another thing, because we still manage a household with small children, so it's harder to be free and available for what he needs. In the morning sometimes he needs me and I can't always I have to organize myself and three children. He is also expected to help organize the children and be part of the process. Some days he can and some days it is more difficult for him."

If you could give advice to the spouse of a young person diagnosed with the disease, what would it be??

"Don't be afraid to be weak, don't be afraid to ask for and get help, get help from the people closest to you, be exposed to people who have already experienced it, go to lectures and be exposed to content in order to understand more not only about the disease itself, but also about dealing with it and its effects on all dimensions of life. The fact that this is a known process with a name and helpful steps."

When a person is diagnosed with Parkinson's disease, there is a process of mourning and acceptance - for him and his family members. It is important to find the sources of support that can help deal with this difficult process - seek mental, medical and paramedical help. In the midst of this whole process, the spouses and family members of those diagnosed with the disease are sometimes transparent, but their lives have also been affected and changed, and it is important to know how to seek help and look for the knowledge and tools that can help in coping, thereby helping both them and the patient

The Parkinson's Association in Israel provides those facing the disease with support, information, and a variety of activities to complete the medical treatment. In addition, the association raises awareness of the disease among the public and promotes the rights of the contestants against the authorities. It is recommended to sign up for a multi-professional intervention program for those dealing with Parkinson's at the rehabilitation center of 'Ezra Le Marfa'. within

The program We dedicate a concentrated day to the members of the patients' families during which they can be exposed to lectures by professionals and deepen their understanding of the disease and receive additional coping tools.

Written and interviewed by: Noa Cohen, occupational therapist Msc. OT. She is responsible for the occupational therapy field in the multidisciplinary rehabilitation program for people dealing with Parkinson's disease at the Azra Le Marfa rehabilitation center, works at Ichilov Hospital and leads the "Family Members and Caregivers Forum" as part of the Parkinson's Association in Israel (doctoral student in occupational therapy in the field of Parkinson's at the University of Haifa).

Interviewee: Galit Wasserman, 36 years old, lives in Sde Boaz with Sagi and her three children.

For this article...


Walla -  Health section 

"There are twice as many Parkinson's patients in Israel compared to the Western world"

How many Parkinson's patients are there in Israel, how do you deal with the disease, what about vaccination and can smoking help? Professor Nir Giladi, director of the neurological system at the Ichilov Medical Center, explains the subject in detail, including the activities of the Parkinson's Association in Israel, the symptoms and the medications. Watch the interview

Parkinson's disease is a degenerative disease of the nervous system characterized by motor disorders. Despite the popular opinion that this is a common disease among adults, young people can also get it. Is it an incurable disease or are there ways to treat it and can smoking help? Professor Nir Giladi, the director of the neurological system at the Ichilov Medical Center explains.

When was the disease discovered??

"It has a scary name, but we have a lot to offer against it. We know more and more about it and to a certain extent we can prevent or slow down the progress of the disease. There are a lot of positive messages that can be conveyed to the public today and it should be much less scary than 200 years ago when It was first discovered by James Parkinson."

Are most patients elderly?

"This is not a disease that begins the day it is diagnosed - many of the patients are indeed adults, but they may have been sick from a young age. Before we diagnose the disease - 10, 20 and even 30 years before, the disease begins to incubate. It can incubate in the mind or body of the person and only those who appear The tremors, the slowness, the stiffness or the walking problems, we say it's Parkinson's."

Is it possible to discover the disease when it is in its infancy??

"The disease develops gradually. There are not so specific signs, such as the loss of the sense of smell that can appear 20 years before the disease is diagnosed."

Is it possible to check if the disease is incubating? There is a certain test?

"Early signs can be detected, but we don't call it Parkinson's."

Anyone can get Parkinson's?

"Age is a risk factor, and people who have a family history of Parkinson's are also at increased risk, especially among the Ashkenazi Jews. Many of them have a mutation that causes Parkinson's. In Israel alone, there are approximately 300 people who have genetic changes that can cause Parkinson's disease. In Israel there are twice as many patients Compared to the Western world. There is also Parkinson's in the East, but we see it less and we do not find genes that cause the disease. We do not suggest that the entire population do genetic tests." 

What about smoking??

"Smoking repels Parkinson's. If during the incubation period you smoke, you actually postpone the appearance of the signs. Let no one interpret me as encouraging smoking, God forbid, but perhaps in the future a nicotine patch for children with Parkinson's may be the recommended treatment. Caffeine also repels the appearance of Parkinson's signs. We Children of patients are recommended to drink 2-4 cups of coffee a day

What are the symptoms of the disease??

"It has the motor component of movement like slowness. Walking slowly, dressing slowly and more. Beyond slowness there is the issue of muscle stiffness, the subject of tremors at rest as well as difficulties in balance. In addition, there are disorders in almost all areas of nervous function, such as mood disorders , a tendency to anxiety and depression, concentration and initiative problems, pain, sensory disturbances and perhaps the most fascinating thing - a disturbance in the autonomic system, which is related to urination, sexual function, sweating and blood pressure. Constipation, for example, difficulty holding back urination or a decrease in the quality of erection are all signs that sometimes precede the the disease or the diagnosis in 5-10 years".

What do we do to stop the progression of the disease??

"The treatments we give today are in two directions - to relieve the symptoms and to slow down the rate of disease progression. What has been proven without a shadow of a doubt that slows down the disease's progression is physical activity - five days a week, one hour of sports a day. With the help of physical activity, we secrete substances that affect cells the brain and slow down the degeneration processes. In addition - a person who engages in physical activity from the age of 20 reduces his risk of developing Parkinson's by 30 percent in life. It is a combination of aerobics, strength and flexibility. I always tell people to do what you enjoy, because you are going to invest At least five hours a week. A person who is diagnosed with Parkinson's and is involved in sports from the first day he was diagnosed, his disease is milder, progresses more slowly, there are fewer complications and fewer medications."

There is a cure for the disease?

"There are a lot of technologies that are being tested. People here are already receiving genetic treatments today. Among the Ashkenazi, 40 percent are sick due to a genetic background. Today we have genetic therapy that stops the gene that causes the disease. As of today, we are giving it to patients in research. Similar to cancer, The earlier Parkinson's is treated, the more the disease can be prevented."

What about family members??

"The treatment today is not for the patient, it is for all family members. The spouse is an integral part of this event, which lasts 10, 20 and even 30 years. The treatment is holistic and comprehensive. With the help of the Parkinson's Association, which changed the treatment, a more comprehensive answer can be given" .

On April 11.4, the Parkinson's conference will be held. You can expand on it?

"I run a center for the prevention of Parkinson's, and once a year, on International Parkinson's Day, we bring together patients, family members, researchers, therapists, students and industry, for one day whose goal is to improve the quality of life of families with Parkinson's. The gathering will be at Tel Aviv University and we expect over 1,000 people Let them come. The association is the living body, the leader and the engine behind this whole event."

The association also helps families?

"It has branches all over the country, with diverse activities whose main goal is to improve the quality of life of Parkinson's patients and their families in Israel. It is a disease that has been faced for decades, and the need to support, guide and combine forces is critical so that we can preserve the quality of life. It is a disease like all diseases If you deal with it correctly, there is quality of life and where to strive. Life is really not over."

Talk about a vaccine?

"We started it with people the day they were diagnosed. Over 300 patients all over the world received a vaccine over two years. Unfortunately, the tested vaccine was not proven to stop the disease, but it also did not cause any harm. Following this experience, there are several attempts at immunotherapy to slow down the disease and possibly prevent it in the future ".

Is this disease interesting to pharmaceutical companies??

"This is one of the most interesting diseases and the most invested. Hundreds if not billions of dollars are invested every year in the development of technologies to improve the quality of life, to stop the disease and perhaps in the future to prevent the disease as well. I sit with thousands of Parkinson's patients; would I promise the patient that what he has today is what he will have Even in ten years, everyone would be buying. The hardest thing about this disease is being afraid of what will happen tomorrow. Any treatment that would give us security or relief, that things are fine, would help."

Does the disease eventually kill??

"There are patients in whom the disease develops quickly, and on the other hand, a group of patients in whom the disease develops slowly. Within two or three years we can tell if it is a violent disease or not. Most patients, with correct behavior and modern treatment, will not experience a violent disease, but a disease that can be lived with. A lot Some of the patients say today, 'When I realized I had Parkinson's, something good happened to me. Suddenly I started thinking correctly.'"

You can give three golden tips to the patient and the family?

"The message that you can live with Parkinson's is very important. The second thing is very important how you behave in your daily routine. You have to take care of physical activity and good sleep, take care of a balanced weight, a good mood and a good relationship, the disease progresses more slowly. Third thing, the drug treatments are very good, there is no reason to avoid or run away from them, but they must be given properly. Parkinson's specialists must be reached. I tell the family members that they are a major player in the event. The mood, involvement and support of the spouses is critical to the patient's quality of life. The spouses must be supported and given the The personal and emotional attention, because they are dealing with a problem."

Can you tell us about Opzine Fund?

"This is a dear Jewish family that donated millions of dollars to the advancement of research to prevent Parkinson's. They thought that Israel was an appropriate place to start this effort because of the number of genetic patients. The center is located at Tel Aviv University and is managed by and by the Avraham Foundation. The money invested in research brings many researchers from various fields different, who understand that it is worthwhile and appropriate to invest in research at the highest level today to diagnose, treat and prevent Parkinson's and I hope that as a result of this effort there will be breakthroughs."

To the full article…


Voila - health section

"Connecting to technology": Towards the Israeli Parkinson's Conference

Lectures for the general public, discussion groups, workshops and even an exhibition. On April 11.4, the Parkinson's Association in Israel will hold, together with Tel Aviv University and the Opzine Foundation, the Israeli Parkinson's Conference, which will be held this year in a face-to-face format and at no cost

In honor of the International Parkinson's Disease Awareness Month, the second Israeli Parkinson's Conference will be held this year under the title "Connecting to Technology". In a conference intended for patients and their family members, and participation in which is free of charge, advanced technological options for those facing Parkinson's in the fields of medicine, rehabilitation, community and disease management will be presented. In addition, there will be lectures for the general public, discussion groups, enrichment workshops and an exhibition where works by people dealing with the disease will be presented.

Just before the conference starts, we caught up with Prof. Sharon Hasin - Director of the Institute for Movement Disorders at Sheba Hospital, Head of the Department of Neurology at Tel Aviv University, board member of the Ofzain Foundation (a foundation on behalf of Tel Aviv University that grants scholarships for research in the field of Parkinson's), and a member of the medical advisory committee for the Parkinson's Association in Israel.

What does it mean to have Parkinson's??

"These are adult people who were perfectly healthy until a certain point when symptoms such as fatigue, depression, decreased sense of smell, constipation, etc. began. At a certain point, a movement disorder begins involving an arm or leg in the form of a slight tremor or stiffness. After that, a movement disorder develops that can also affect walking In addition, there are difficulties with internal systems such as the digestive system and some patients even suffer from pain.

It is a common disease and the average age at which it starts is 60, but there are quite a few young people in their 40s who deal with the disease and of course the elderly. Also, the disease is more common among men."

What is it caused by??

"In most cases, we don't know why one person and not another gets Parkinson's. Some of the contestants have other relatives who got sick, but this is only in some cases. We believe that there are genetic factors involved, and in a small part of the cases we know how to identify a genetic mutation that contributes to the development of the disease. But there Also environmental factors that influence, but as mentioned in the large majority of contestants, the hidden is greater than the visible in this case."

Physical activity can help cope with the disease?

"There are studies that show that people who did physical activity in their youth suffer less from Parkinson's, compared to those who did not do sports. We see that physical activity affects the manifestations of the disease and improves the ability to deal with it as well as the quality of life of the patients in an amazing way. I am talking about varied physical activity - at least 5 hours a week, which includes a wide variety of types in the form of aerobic activity (running, walking and swimming), flexibility, strength, balance practice, tai-chi, pilates, yoga and more."

Do you think the forecast that speaks of twice as many patients in the world in about a decade is correct??

"Due to the aging of the population in the Western world in recent years, the average age at which Parkinson's disease begins has increased - so we can say yes. Parkinsonian symptoms are part of aging and at later ages are very common. The big challenge is when the disease strikes at a young age. Mid-career, starting a family, etc." .

how to treat?

"Fortunately for the patients, the disease can be dealt with in an excellent way with the help of taking drugs that introduce dopamine into the body. We constantly try to make the drug treatment accessible, even though there are side effects that we also know how to deal with."

Some contestants stay in the closet. why?

"The reason is that the disease has visibility. A person with Parkinson's undergoes a change - their posture changes, the voice, the speech, the posture, etc. These are labeling things. You immediately recognize that this is a different person while the contestants want to be treated as normal. The support they receive from the medical professionals and the Parkinson's Association in Israel helps them a lot Don't be ashamed and hide and deal openly. I always say to every patient, 'It's enough that you got the disease, you're not to blame and you don't need to suffer shame, and you have to understand that it can happen to anyone.'"

What can you tell us about the Parkinson's conference that will be held next week??

"This is only the second time it has been held and there is great excitement after a difficult period. The corona virus is one of the most difficult times I have experienced with patients with Parkinson's disease. It took away from the patients the ability to cope - they were limited in physical activity, social activities, meetings with the Parkinson's Association and they were robbed of the support options .

Last year, due to the situation, we held a virtual conference that was colorful, beautiful and fascinating. This year we are holding a frontal conference in a huge hall at Tel Aviv University. All the activities are dedicated to people who are dealing with the disease, including family members and companions. All the medical professionals and health professionals who deal with Parkinson's are mobilizing for them. It is a diverse day with activities and lectures, a day of pride for people with Parkinson's who can To be exposed together to a lot of information and take an active part in discussion groups. There is a lot of joy and a positive outlook at the conference."

Can you tell about the activities of the association?

"The Parkinson's Association in Israel has existed for many years and does important and welcome work. The association promotes the interests of patients vis-a-vis the Ministry of Health and the health insurance funds, makes treatments accessible to patients in the periphery, mediates between doctors and patients, and nurtures the health professionals so that they choose to specialize in the field of Parkinson's due to the tremendous shortage in the field. This is a gathering of great people, with an outstanding CEO who made a real revolution."


What are the technological developments in the field?

"The technology that is constantly around us has also penetrated the world of medicine. Today, with the help of technology, health professionals treat people by remote control, which is critical in Parkinson's. With the help of technological means, it is possible to measure the symptoms of the disease, such as the sound of movement and tremors, and thus achieve more accurate results. In addition, there are means Innovative aids and medical treatments, such as brain pacemakers and digital infusion pumps that help reduce tremors and improve movement."

What areas does Parkinson's research focus on these days??

"There has been tremendous development in recent years. We have been able to understand more about the mechanisms of the disease, what causes the symptoms, and which processes at the cellular level are responsible for this. Thanks to this understanding, researchers are developing treatments that have a higher chance of slowing down the developmental process of Parkinson's disease. For example, in the last decades they realized that there are Antibodies that can be injected into the patient to help him cope, as well as molecular technologies that can affect the brain. I believe we will achieve real achievements in the coming years."

Does the disease eventually kill??

"The disease does not kill directly. The elderly with Parkinson's die mainly from infectious diseases and falls as a result of having difficulty moving."

Are we on the way to a cure for the disease??

"It seems we are closer to getting there than ever before. There have been some disappointments along the way but there are many people involved in the field so I believe we are on our way."

To listen to the interview click here...


Well - it's about health 11-04-2022

"I was diagnosed with Parkinson's a month before giving birth. It was the end of my life"

44-year-old Liron is dealing with Parkinson's disease despite her young age: "Suddenly I felt that my legs were getting tangled. Fortunately, my family helped me pick myself up." Watch the article

Four years ago Liron received the hardest news of her life. "I was diagnosed with Parkinson's disease four years ago in November 2018, a month before giving birth," she says. "I was playing sports and suddenly I felt like my legs were getting tangled. I was sure it was just because I don't have Parkinson's in my family. My father died at the age of 88, my mother is 87 today, so when they told me it was Parkinson's I was shocked. It was the end of my life."

"The family helped me pick myself up," noted Liron. "Immediately after the diagnosis, we told the immediate family and I met quite a few good people along the way. Knowing that the association is there in case I need significant help helps a lot. In addition, the association organizes meetings that help a lot from a social, community and emotional point of view."

Liron continued: "For me, the limp is the most obvious part. It's easier for me to run than to walk. In addition, my function on the left side is less good, I tremble on that side. I was referred to physio boxing and very quickly I saw that there are many people both my age and younger, even significantly It's a framework that allows me to exercise, which for Parkinson's is critical."

In conclusion, Liron said: "I would like to tell the young people who have not come out of the closet with Parkinson's that hiding it takes a lot of energy from the patient himself, from the family, from the friends, and it's a shame. These energies should be channeled elsewhere."

Click here to watch...


HML   A news and flash site from Walla   11/4/2022
Not just tremors: Parkinson's at a young age

It turns out that depression, self-image disorders, decreased sex drive, social isolation, economic harm and even increased drug use are among the common symptoms for those dealing with Parkinson's disease at a young age. Dr. Meir Kestenbaum

What is Parkinson's disease??

Parkinson's is a neurodegenerative disease caused by the degeneration of nerve cells that contain the chemical mediator dopamine, which is essential for movement. The disease has movement symptoms that include, but are not limited to, tremors, stiffness, slowness and gait disturbances. There are non-motor symptoms that include cognitive changes, sleep disturbances, mood disturbances, anxiety, constipation and sphincter dysregulation. In most patients, the symptoms gradually worsen over the years and cause an increasing limitation in function, and damage to the quality of life.

It is the second most common degenerative neurological disease (after Alzheimer's disease), and affects 2% of the population up to the age of 80. Although the average age of diagnosis is towards the end of the 7th decade of life, it is known that the first symptoms of the disease appear years before the diagnosis, and include a decrease In the sense of smell, constipation, and a sleep disorder manifested by shouting and making wild movements to the point of falling out of bed. In view of the fact that these symptoms are not specific to Parkinson's disease, most patients are evaluated by a neurologist only after the appearance of movement symptoms, such as tremors, slowness and gait disturbances. The movement symptoms are necessary for making a clinical diagnosis of the disease, and appear when the degenerative process of the nerve cells is already progressing.

Young-onset Parkinson's disease is defined as a disease with the onset of movement symptoms under the age of 40. This is about 7% of Parkinson's patients in Israel (about 2,000 patients), out of about 30,000 patients. The young group has unique characteristics and differs from most older Parkinson's patients both in terms of the clinical course of the disease and in terms of the emotional, social and occupational impact on the patients.

How is the disease diagnosed??

A Parkinson's diagnosis requires the presence of a combination of movement symptoms including tremors, slowness, stiffness and gait disturbance. Although the symptoms of the young patients are similar to the older patients, there is a delay in the diagnosis of the young patients. After they come to be evaluated by a neurologist, they will be required to come several times until the diagnosis is made. Sometimes there is difficulty for the patient to accept the diagnosis and agree to receive drug treatment.

What are the main symptoms??

In terms of movement symptoms, tremor is the most common symptom in all Parkinson's patients, regardless of the age of onset of the disease. However, in the group of young patients there is a higher incidence of muscle stiffness and dystonia (involuntary contraction of muscles). Also, there is a higher frequency of fluctuations in the movement state of the patients with the phenomenon of dyskinesias (involuntary movements) and OFF states, in which there is a fading of the medicinal effect and a return of the symptoms.

Young Parkinson's patients live an average of 30 years with the symptoms of the disease, resulting in a shortening of about 15 years of life

How the disease manifests itself in young people?

Most studies prove that the rate of progression of motor symptoms is slower in the group of young patients, compared to the older ones. But the frequency of phenomena such as depression, low self-esteem, decreased quality of life, and social and family difficulties is higher. In addition, there is an increased prevalence of drug use.

Young Parkinson's patients live an average of 30 years with the symptoms of the disease, resulting in a shortening of about 15 years of life. In addition, there is a difference in the drug treatment given to patients.

What are the treatment methods??

The disease can be treated with several types of drugs, including drugs that act on the dopamine receptor (dopamine agonists), which have a side effect profile that includes gambling addictions, compulsive buying and compulsive sex. It is important to inform the patients and their family members about the possible side effects of the treatment.

Does genetics play a role??

It is known that genetics play an important role in young Parkinson's patients, and family kinship is identified in approximately 20% of patients in this group. The more family members have the disease, the higher the chance of a genetic mutation. So far, dozens of genetic changes associated with a young disease age have been identified. Among the genetic mutations described is a mutation in the GBA gene, which is common in the Ashkenazi Jewish population and has a relatively rapid disease course, which in addition to the movement disorder also includes cognitive changes.

What are the consequences of the disease on work and the relationship with the family?

In view of the young age of onset, most of the patients are in their working years. The symptoms of the disease gradually impair the ability to perform work, require adjustments and sometimes lead to a stoppage of work which causes economic consequences of a decrease in income and a significant emotional impact on the patient's self-image, social isolation, and a decrease in quality of life. There is a significant need to raise employers' awareness of the limitations that exist due to the disease and to provide emotional support to patients.

Also on the family and social level there is a unique effect on the young patients. Among the challenges that patients face is the need to maintain contact with their spouse in the presence of a chronic illness. In addition, most patients have young children who have to deal with a complex reality where the parent has limitations that impair functioning. It is important to note that the ability to maintain contact with friends who are an important emotional anchor and helps to cope.

Parkinson's and pregnancy

Parkinson's disease does not affect fertility and the chance of getting pregnant. At the same time, it is often necessary to take medication for those dealing with the disease during pregnancy in order to prevent worsening of movement function and quality of life. Of course, it is necessary to stop medications that may harm the fetus and switch to safe medications during pregnancy.

In conclusion

Parkinson's disease in young people is an uncommon phenomenon of a common neurological disease. Raising the awareness of the public and the medical teams to these patients, to their unique characteristics, the drug treatment, the emotional, family and occupational challenges they face will enable a faster diagnosis and the provision of a comprehensive medical and social response that will help improve the quality of life of the patients and their family members.

 

To the full article…

 


Well - health section 12-04-2022

"Suddenly the hand doesn't move": how do you deal with Parkinson's disease at the age of 37?

Despite his young age, Sagi Wasserman is dealing with Parkinson's disease: "I didn't know how much it affects the daily routine." And also: the difficulties, the uncertainty and the Parkinson's Association.

An interview with Dr. Ilana Schlesinger, neurology specialist, director of the Institute for Parkinson's Movement Disorders at the Rambam Hospital, about Parkinson's disease: what are the symptoms and prevalence of the disease, is there an increase in morbidity, are young people also sick and how can they be helped to cope. Parkinson Israel Association Helps contestants and family members. The association organizes a conference called Connecting to Technology in the Parkinson's Service.

To the full article…


Maariv - news pages 13-040-2022

Parkinson's Awareness Day: 35 thousand patients in the State of Israel

The Parkinson's Association in Israel helps about 35 people in Israel who are dealing with the disease and their families, and provides support around the clock and a variety of services at no cost. The association was established in 1993 in an attempt to help Parkinson's patients in dealing with the difficulties of the disease and improving their quality of life. Its purpose is also to raise awareness of the importance of helping Parkinson's patients.

The association is working with the Ministry of Health to expand the services recognized in the health basket in order to increase the supply of medical and paramedical solutions for people dealing with the disease. At the same time, it works in collaboration with the Ofzain Foundation, Tel Aviv University and the Israeli Association for Movement Disorders to promote collaborations between researchers and doctors in the field of Parkinson's, and is involved in promoting research in academia and pharmaceutical companies.

Unique activities take place in the branches: creating social relationships that are of great importance to the contestant and they give him a sense of identification, empowerment, learning and a listening ear. There is also a hotline, which includes telephone support, help, initial advice and referral to a care provider. The association maintains continuous contact with the disability division of the National Insurance, including cases where intervention is required to determine disability. The association's website presents a "Guide for Parkinson's patients", written in collaboration with the National Insurance and a website that provides extensive and up-to-date information.

Also, the association initiated support workshops for newly diagnosed, young and advanced contestants, as well as support workshops for married couples and spouses of contestants with Parkinson's. In addition, blogs are published for direct contact with experts in a variety of fields in the world of Parkinson's, and we cooperate with a medical advisory committee, consisting of neurologists and physiotherapists.

As part of the expansion of activities, it was decided to subsidize members of the remote rehabilitation project - speech and swallowing rehabilitation, to subsidize members from the periphery for transportation to treatments and to subsidize members of close rehabilitation - arrangements with physiotherapy rehabilitation institutes. In part of the rehabilitation process, those new to the disease are accompanied by veteran mentors.

Parkinson's disease is a degenerative disease of the nervous system, and is characterized by slowing down and decreasing movement, muscle stiffness, tremors at rest and instability. It is a chronic, progressive, multisystem and incurable disease. The patient suffers from severe functional disorders that are evident externally when standing, walking, eating, writing and speaking. In the advanced stages of the disease, other body systems are affected, such as digestion, kidneys and breathing. In some patients, the symptoms of involuntary movements, depression and dementia are also added, which deteriorate the patient into a nursing condition.

The average age for the diagnosis of the disease is 65, but many people are diagnosed with Parkinson's disease at a very young age, starting at the age of 20.


Maariv online - quality of life section 13-04-2022

Parkinson's Awareness Day: 35 thousand patients in the State of Israel

The Parkinson's Association in Israel helps about 35 people in Israel who are dealing with the disease and their families, and provides support around the clock and a variety of services at no cost. The association was established in 1993 in an attempt to help Parkinson's patients in dealing with the difficulties of the disease and improving their quality of life. Its purpose is also to raise awareness of the importance of helping Parkinson's patients.

The association is working with the Ministry of Health to expand the services recognized in the health basket in order to increase the supply of medical and paramedical solutions for people dealing with the disease. At the same time, it works in collaboration with the Ofzain Foundation, Tel Aviv University and the Israeli Association for Movement Disorders to promote collaborations between researchers and doctors in the field of Parkinson's, and is involved in promoting research in academia and pharmaceutical companies.

Unique activities take place in the branches: creating social relationships that are of great importance to the contestant and they give him a sense of identification, empowerment, learning and a listening ear. There is also a hotline, which includes telephone support, help, initial advice and referral to a care provider. The association maintains continuous contact with the disability division of the National Insurance, including cases where intervention is required to determine disability. The association's website presents a "Guide for Parkinson's patients", written in collaboration with the National Insurance and a website that provides extensive and up-to-date information.

Also, the association initiated support workshops for newly diagnosed, young and advanced contestants, as well as support workshops for married couples and spouses of contestants with Parkinson's. In addition, blogs are published for direct contact with experts in a variety of fields in the world of Parkinson's, and we cooperate with a medical advisory committee, consisting of neurologists and physiotherapists.

As part of the expansion of activities, it was decided to subsidize members of the remote rehabilitation project - speech and swallowing rehabilitation, to subsidize members from the periphery for transportation to treatments and to subsidize members of close rehabilitation - arrangements with physiotherapy rehabilitation institutes. In part of the rehabilitation process, those new to the disease are accompanied by veteran mentors.

Parkinson's disease is a degenerative disease of the nervous system, and is characterized by slowing down and decreasing movement, muscle stiffness, tremors at rest and instability. It is a chronic, progressive, multisystem and incurable disease. The patient suffers from severe functional disorders that are evident externally when standing, walking, eating, writing and speaking. In the advanced stages of the disease, other body systems are affected, such as digestion, kidneys and breathing. In some patients, the symptoms of involuntary movements, depression and dementia are also added, which deteriorate the patient into a nursing condition.

The average age for the diagnosis of the disease is 65, but many people are diagnosed with Parkinson's disease at a very young age, starting at the age of 20.

To the full article…


Well - health section 13-04-2022
The goal is to find a treatment": We visited the Israeli Parkinson's conference.

On International Parkinson's Day, the second Israeli Parkinson's conference was held with the participation of sufferers and their families, with the aim of raising awareness of the disease: "Dealing with Parkinson's is a challenge not only for the patient himself but for everyone around him"

The Israeli Parkinson's conference was held on International Parkinson's Day (11.4), with the participation of people dealing with the disease and their families. During the conference held under the title "Connecting to Technology", lectures on the subject, discussion groups, an exhibition and more were held.

We also came to the conference to hear these important things up close, and along the way we caught up with Prof. Sharon Hassin, Director of the Institute for Movement Disorders at Sheba Hospital, Head of the Department of Neurology at Tel Aviv University, Board Member of Opzain Foundation and Member of the Medical Advisory Committee for the Parkinson's Association in Israel, for a conversation fascinating

 

"Dealing with Parkinson's is a challenge not only for the patient himself but for everyone around him," said Prof. Hassin. "A person with Parkinson's feels the symptoms throughout the day. In most cases we don't know what caused Parkinson's, but over time we understand more about the processes of brain damage and our main goal in the coming years is to arrive at a treatment that will change the course of the disease."

"Morbidity in Israel is similar to the rest of the world," added Prof. Hassin. "There are probably close to 30 people in Israel with Parkinson's and anyone can get sick. The main risk factor is advanced age, but there are also young people who get the disease. Additional risk factors are if there is another family member who has Parkinson's. It is important to note that physical activity has effects are superior to the patient's quality of life and functioning, and possibly also to the very progress of the brain disease."

"We decided to hold the Israeli Parkinson's conference in order to mobilize the entire field of technology. In the lectures and discussion groups, we talk about the medical technologies that are going to completely change the healthcare system, for example telemedicine. This is to teach the patients how technology can be used to their advantage," said Prof. Hassin.

Prof. Hassin also said: "Many people dealing with the disease are afraid to be exposed, but fortunately in Israel there is the Parkinson's Association in Israel that promotes all aspects of treatment and provides a social framework that empowers the patients, which includes classes and enrichment. Everything that any person could wish for himself, the association manages to provide To them. My golden advice for those dealing with the disease is supervised coping. I am sick with the disease, but it does not control me. In addition, physical and social activity should be combined and thus the quality of life will improve as well as longevity."

To the full article…


Maariv - added on the weekend of 21-04-2022


More stories of contestants at a young age

The story of Eitan Gross, a scientist who studies the brain and a dancer who has Parkinson's:

Scientist and researcher from the Weizmann Institute, 56 years old, has been dealing with Parkinson's for about 4 years. The disease started for me 10 years before the physical symptoms began to appear, but I felt the disease even before the final diagnosis, I felt it in my mind and spirit, not necessarily in my body first. In the past, I was a ballet dancer, but after the disease appeared I chose to focus on science, but the love for dance still exists and today I dance as a hobby despite and despite the disease. Living with the disease at a relatively young age and knowing that the disease progresses over time is definitely not a simple thing. The moment the disease was discovered I was shocked, I felt a sense of anxiety and even shame, but when the tremors started to appear in my hands and then in my legs, I realized that there was no point in hiding and I decided to "come out of the closet".

The story of Tal Asher, who has Parkinson's disease and is the captain of the volleyball team (Mament):

54 years old +2 diagnosed for 13 years (tremor, foot contracture - dystonia, involuntary movements), works in a family business in the field of industry and from her personal experience she accompanies and supports people who face medical challenges. Engages in varied physical activity about 7 hours a week but the main activity is volleyball. Serves as team captain in Tel Aviv. Active in the national Mamant and participates in national and international competitions.