Empowering people with Parkinson’s

The Israel Parkinsons’s Association helps patients and their families explore ways to best live with the complex disease.

British Prime Minister David Cameron looks through a microscope at regenerating cells, part of a Parkinson’s disease research project. (photo credit: REUTERS)
British Prime Minister David Cameron looks through a microscope at regenerating cells, part of a Parkinson’s disease research project.
(photo credit: REUTERS)
The Dead Sea is known for its healing properties, and the air at the Dead Sea is no less healing than the water itself. It is there that the Israel Parkinson Association has been conducting its winter seminars for close to 15 years.
During the second week of February, 120 people in varying stages of Parkinson’s disease, together with their spouses or caregivers, descended upon the Crowne Plaza Hotel in Ein Bokek for the annual winter seminar. The five-day program offered workshops in dance, Tai Chi, Feldenkrais and laughter yoga, along with lectures, movement and art therapy, reflexology and Shiatsu treatments, support groups and more. In the evenings there were musical performances, sing-alongs and dancing.
Parkinson’s is a complex, progressive disease, characterized by muscle rigidity, tremors and changes in speech and gait; it is a disease that ultimately changes every aspect of the patient’s life. Typically diagnosed between the ages of 50 and 65, it gradually affects the way the patient moves and walks, making daily activities increasingly difficult. The progression of the symptoms is different for each person and there is no known cure, but there is a variety of ways to relieve the symptoms.
Parkinson’s affects the patient not only physically, but also emotionally and socially, and in later stages, the patient can also be affected mentally. It is a disease that has an effect on the whole family and its functioning; the more information the patient and his family have about the disease, the better prepared they are to face the challenges. The Israel Parkinson Association, founded in 1993, was established to make this information more accessible, and also provides emotional support, social programming, exercise classes and twice-yearly retreats for patients and their families.
There are two ways people react upon discovering they have a serious progressive disease such as Parkinson’s. One is to try to keep it a secret from friends, neighbors and even relatives, by going out less and trying to hide the increasing symptoms of the disease. People who react this way are less likely to investigate all their options for treatment, and are more likely to feel depressed and isolated. The other, more positive way to react is to learn, together with family members, as much as one can about the disease and how to cope with symptoms and improve quality of life, and ensure one gets out of the house, stays interested in activities they enjoy, and talks with friends and family about challenges.
The expression “coming out of the closet” is generally used in reference to homosexuals being open with other people about their sexual identities. The same term is used by Parkinson’s sufferers and the professionals who care for them.
“A lot of Parkinson’s patients hide,” explains Dr. Ilana Schlesinger, a senior neurologist who directs the Movement Disorders and Parkinson’s Center at Rambam Medical Center in Haifa. “They don’t want other people to know that they are sick.”
When asked if people are more open nowadays about their health, she says that in her experience this is not the case. The exact number of Parkinson’s patients in Israel is not known, she says, but it is estimated at between 25,000 and 28,000. Out of this number, 2,500 belong to the Israel Parkinson Association.
“The people who attend the IPA’s twice-yearly seminars and activities in the local branches are the ones who are reaching out for help, for information,” says Aviva (not her real name), the wife of Yossi, a man with Parkinson’s. She volunteers for the IPA and joins her husband at the seminars. “Yet there are thousands of others who remain ‘in the closet.’”
Aviva and her husband sit side by side in the hotel dining room. Yossi looks quite young, a handsome professional man who developed symptoms of Parkinson’s in his early 50s, at the peak of his career.
“The people who come to these seminars become friends and a source of support for each other,” Aviva says. “Some come alone, but many come with a spouse. While some of the couples stick to themselves, a lot of us of have become close friends. When we see each other at the seminars, it is like getting together with family.”
There are 20 branches of the Israel Parkinson Association in the country, including a group called Hefetz (a Hebrew acronym for “Young Parkinson’s patients”), designated for those who have developed the disease at a fairly young age, or those who are newly diagnosed and still quite active. As the newly diagnosed have an initial period of a number of years before the increasing symptoms make it hard for them to get around unassisted, this group organizes hikes in nature sites, in addition to lectures, exercise groups and holiday parties.
The participants at the recent winter seminar were kept busy with a program that focused on physical exercise and alternative treatments. During a couples’ reflexology workshop, the relationship between the spouse who has Parkinson’s and the healthy spouse was sup-ported, as the ill spouse received a treatment intended to promote relaxation, improve circulation and encourage natural healing processes. The workshop was taught by Chaya Agur, a reflexologist who is a Parkinson’s patient herself.
Reflexology is an ancient healing method based on the premise that there are reflex points on your feet which correspond to every organ, gland and system of the body. Agur handed out sheets with pictures of the different points on the foot and detailed the benefits of massaging these points. She then instructed the couples to sit in seats across from each other, and guided them in trying it out.
IN ANOTHER workshop, close to 50 people sit facing Chaya Wasserman, a lively woman who lost her muchloved husband in a 2008 terror attack. Wasserman, who wrote a book about her own journey through grief and trauma after her husband’s murder, explains to the group why laughter is good for both physical and emotional health.
She then passes out smiley stickers for each person in the room to stick on their clothes, or even on their faces. Guiding the group in deep yoga breaths, she begins to make sounds for them to repeat, “He, he, he, ho, ho, ho.” Explaining that the brain does not differentiate between natural laughter and contrived laughter, and that the benefits are the same, she continues, “Ha, ha, ha.” Husband- and-wife pairs, people in wheelchairs and foreign caregivers alike begin to giggle, and one woman begins to laugh uncontrollably. Wasserman guides the group through an hour in which day-to-day aches, pains and worries are forgotten. No one is left untouched by the laughter.
The Israel Parkinson Association is entirely managed and directed by volunteers. No one receives a salary, and the devotion of the volunteers is immense; many are spouses of Parkinson’s sufferers, and some have lost spouses to the disease. The seminar at the Crowne Plaza, which ran with professional precision, was the product of countless hours of planning and organizing by a dedicated committee of these volunteers.
The association was founded in 1993 by Raffi Meidan, together with the late Yitzhak Mehraz. Meidan, who today is in an advanced stage of Parkinson’s, is at the seminar with a caregiver.
“More than 20 years ago, I was living in Japan,” he recalls. “I didn’t know I had Parkinson’s until I went to a doctor for something else, and he asked me, ‘What are you going to do about your Parkinson’s?’ He recognized the symptoms. He gave me medication and told me to come back in three months, giving me no other information about the disease and what to expect.”
A few years later, Meidan returned to Israel and to a different neurologist, and decided to seek out other Parkinson’s sufferers. His Israeli neurologist supported his efforts to create a community of Parkinson’s patients, and shared knowledge about what to expect and treatment options. Meidan discovered two small support groups that were already in existence in two cities and got involved with them, connecting them and eventually integrating them into a new nonprofit, the Israel Parkinson Association.
Since 1993, the IPA has grown from 20 people to the 2,500 members it has today. Each branch is run by a volunteer director, with a volunteer committee which regulates activities, lectures and exercise classes. Often, patients deliver the lectures themselves. Meidan, for his part, gives lectures about dealing with the bureaucracy of the National Insurance Institute and other bodies, in order to receive the benefits one is entitled to by law.
As the IPA has grown, one of its main objectives continues to be to reach out to as many Parkinson’s patients as possible. Volunteers actively work on developing contacts within the medical community, to make their programs more well-known among the Parkinson’s community.
Tikva Meron, an oncology nurse who did her doctoral project on people with long-term conditions, explains the physical, emotional, social and cognitive effects of Parkinson’s. “People talk about ‘dying with respect,’” she says. “I want to talk about living with respect.”
Meron points out the importance of having a full understanding of the illness and its treatment. She says that sharing frustrations and fears for the future with family, friends and support groups is as important to treatment as medication. “It is important to focus on what you can do,” she stresses. “Concentrate on the things you can do today, the goals you can reach now. Even within the disease, you can dream.”
The effectiveness of exercise and alternative treatments to relieve symptoms is becoming more widely understood, but a lack of awareness remains about treatments which can alleviate the symptoms. There is also not enough specialized care, Meron emphasizes. While certain challenges that Parkinson’s patients face are similar to the challenges faced by sufferers of other chronic or progressive illness, Parkinson’s has its own complex network of symptoms and challenges.
Currently, two Israeli hospitals are planning treatment centers specifically aimed at treating Parkinson’s patients. MK Moshe Feiglin, whose wife, Tzippy, has the disease and was at the Dead Sea seminar, is the head of a lobby in the Knesset for the benefit of Parkinson’s patients and the establishment of palliative centers for their care. Because of his personal experience, Feiglin is working towards increasing awareness and promoting treatment for the thousands of Israeli with Parkinson’s.
While at the Crowne Plaza, seminar participants had the opportunity to take advantage of both the outdoor pool and the indoor Dead Sea water pool. It was February, but the weather was warm and balmy. In an art workshop lead by Tsipi Shaish, an art therapist who suffers from the disease, a small group painted with their hands, creating shapes and designs with bright colors.
When asked what they felt while painting, one participant said it made her feel relaxed and peaceful, while another said that his anger at his situation was expressed in the painting. One woman showed her painting to the others and said depicted her own hand shaking.
“Being involved with the seminar empowers people at all stages of the disease,” comments Dr. Schlesinger.
On May 14th the Israel Parkinson’s Association is having a special day in honor of Israel Parkinson’s Day.