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August 2, 2015 — Flushing Residents Receive Free Rain Barrels at ICCJ

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Synagogue’s Member Series of Educational Events

Dystonia Presentation
by Sandy Bernstein

September is Dystonia awareness month .If anyone would like to make a donation.
The address is Dystonia Medical Research Foundation
One East Wacker Drive Suite 2810
Chicago, Illinois 60601-1905

I’m not doing this to gain your sympathy, but rather to empower you regarding Dystonia.
My saga started 41 years ago, when I was 21. It began with an awful headache that felt like something was exploding in my brain. A few minutes later I developed a pronounced head tremor that was constant. It looked like I was saying no to everything. It would occasionally go away, but eventually it would return. Very gradually the rest of my body was affected. Another symptom that occurred was that I had difficulty walking. I was walking on the outer edge of my feet, like Milton Berle’s comedy routine, but what was happening to my body was no joke. I also developed a tremor in both of my arms that required the use of arm braces. At one point, my left arm would go behind my back. I was forced to use a built-up walker, in conjunction with leg braces. When my legs failed, I had to rely upon a motorized wheel chair to get around. I still needed to use the arm braces.

During this time I had been working in Manhattan. Eventually, I relocated to Queens, working for the State. When I started my job, it required lifting, carrying, filing, and walking. Whenever I had to take time off and then return to work, my job would be changed to suit my needs.

Eventually, I was promoted to a supervisory position. After a while, I had to leave again. The last time that I left and returned, I still held the same job title, but the position was not as demanding and I had my motorized wheelchair which helped me get around. As my condition deteriorated, my work schedule went from full-time to part-time. Finally, in 2004, I was unable to work at all.

I was a young woman trying to have a social life, but never knew what changes each day might bring. I tried to travel and engage in activities with my friends, yet Dystonia was creeping through my body and limiting my freedom to lead a normal life.

What do you think this was doing to my parents? They were terrified about what would happen next.
I had lived with my condition for three years before it was diagnosed. The name given to my ever-increasing dysfunctional systems was Dystonia. Despite what some people may think, Dystonia is not a country in Eastern Europe.

It is, however, a body movement disorder.

The term Dystonia was originally coined by Dr. Hermann Oppenheim, a German neurologist, more than a century ago, in 1911.

For almost three decades a small but growing group of scientists has labored to understand how and why Dystonia occurs and how to stop it. One type of Dystonia is early onset Dystonia, which primarily affects the Ashkenazi Jewish population. The gene involved is DYT1. Symptoms impact upon such things as the ability to walk or write.
It is very rare for an adult to have the gene. If the gene is present it will start to appear around age 8. Symptoms in the legs begin at an average age of 9; in the arms, 15 is the average age. A small minority of people have symptoms which begin in the neck or the cranial muscle. If this is the case, the limbs are not involved.

Individuals who have Dystonia may be worried that their children are at risk of inheriting the disorder. Being aware of the genetics can be quite important in the diagnosis and the means of treatment. There are some forms of the disorder that known to be genetically inherited. However, there are forms which may or may not have a genetic component. At the present time, researchers can neither confirm nor rule out genetic possibility in these cases. Currently, there are several genes with numerous mutations and other abnormalities which have been identified and linked to other specific forms of Dystonia.

If an individual does have a form of dystonia that is known to be genetic, then there is a chance that that person may pass it along to his or her children. This is especially true if other family members exhibit symptoms or have already been diagnosed.

Not everyone who inherits a gene mutation will develop symptoms. Some people develop the disorder without there being any family history. Also, there are families in which members have been diagnosed but no specific gene mutation has been identified.

It is interesting to note that 90% of Ashkenazi Jews with the DYT1 mutation develop Dystonia.
However, in the non-Jewish population the occurrence rate is only 50%.

There are a variety of treatments for the disorder. Oral medications are usually tried first.
Artane is one of the most widely used. The dosage is up to 100 mgs. In children the side effects can be very troublesome because one of the chief problems is the impairment of cognitive abilities. Other drugs used orally are baclofen and clonazepam. Sometimes the medications are used in combination. Doctors also sometimes use botox.

I tried a variety of these drugs without much success. There is one other thing that can be done. It is brain surgery and it is used as a last resort. Unfortunately, not everyone is a candidate for the procedure. Fortunately, I was. My condition had deteriorated to such a degree that I was left with no hope for a viable life. It was my brass ring and I grabbed for it. That was back in 2005. This miracle treatment has enable my to resume a relatively normal life.

There are two specific reasons to do genetic testing. The first is if there is a family history of Dystonia. The second is if there is no family history but the disorder is present in more than one sibling.

I know of a family where this applied.

There were two sons. The younger one showed signs of Dystonia. He was tested and found to have the gene. His older brother got married and was considering having a family. It was in his best interest to have the testing done. His outcome was fine. People have to make their own decisions as to whether or not to undergo the testing.

I do not have any children or siblings but I did take part in a research study and I do not have the gene. There is ongoing research to find better treatments for the disorder and an eventual cure. I don’t expect to see it in my lifetime but hopefully it will happen in the not too distant future.

I have not let Dystonia stop me completely. I do travel with my friends and have hobbies. I just have to do things differently and plan my activities carefully. I work diligently to spread the word about Dystonia and I have raised funds for the Dystonia Medical Research Foundation.

Approximately 250,000 Americans suffer from Dystonia. Scientists are working diligently to find out why it occurs, better ways to treat it to make life easier for those who are afflicted by the disorder, and perhaps find a viable cure that one day may restore complete motor capabilities and a normal life to those struggling with the disorder

Jewish Community Relations Council News About Ebola

  Please click here to see recent information about the Ebola virus. ebola    
New Book Alert!

The Hope: American Jewish Voices in Support of Israel

A collection of essays and sermons written by Jewish leaders during the recent conflict between Gaza & Israel. Our rabbi has an essay in the publication.

All proceeds from the sale of this book benefit the Lone Soldier Center in memory of Michael Levin.

To learn more about it, go to www.lonesoldier.com.
This book may be purchased at www.amazon.com (click here).

hope

Talk in Synagogue of Israel and Gaza Goes From Debate to Wrath to Rage

A printed version of this article appeared in the New York Times on September 23, 2014, on page A16 of the New York edition.

Rabbi Ron Aigen of Congregation Dorshei Emet in Montreal, a Reconstructionist synagogue. “It used to be that Israel was always the uniting factor in the Jewish world,” he said. (Credit: Christinne Muschi for The New York Times)

After Rabbi Sharon Kleinbaum read names of children killed in Gaza, she was vilified online but retained the backing of her synagogue’s board. (Credit: Chang W. Lee/The New York Times)

With the war in Gaza still raging, Rabbi Sharon Kleinbaum offered an unusual prayer for peace last month during a Friday night service at the large predominantly gay synagogue she leads in New York. Cautioning her flock not to “harden our hearts” against any who had suffered, she wove throughout the prayer the names of young Israeli soldiers — as well as Palestinian children — who were killed in Gaza. (See more.)

Wellness and Aging

 

Thoughts on Happiness and Aging

by Sheldon Ornstein Ed.D, RN, LNHA

shelly head shot  
I wake each morning and silently recite the Hebrew blessing expressing thanks to G-D for restoring my soul for another day. I am speaking of course of the ModehAni prayer. Many of you, I am sure, know that feeling. I begin the day with a question: is this the start of a “happy day” and perhaps beyond? We struggle throughout our existence experiencing unrelieved stress, and significant losses and still look for ways to be content and productive with our lives. There is a growing body of research on the science of happiness that can be explained in terms of physiologic changes occurring with our bodies that we perceive as happiness. (See more.)

Mislabeling and Aging
by Sheldon Ornstein, Ed.D, RN, LNHA

Far too often, we label a person as “senile”; it is a thoughtless expression steeped in prejudice. “Diagnosing” a person as “senile” is accurate only when we mean there is a continuing pattern of progressively deteriorating thought and behavior coupled with a medically proven diagnosis of an irreversible brain disease.
Careless use of this single word (senile/senility) suggests that we think we know what is wrong and there is nothing more to understand or to be done. This attitude is not justified even when the person is, in fact, suffering some form of a progressive cerebral change. But the attitude is particularly destructive when the individual is troubled, yet far from “senile.”

Even professionals are capable of making such errors. International mental health teams and researchers in the field of gerontology, who have been studying this problem, have discovered that many elderly persons were labeled with the term senile/dementia while the problem is, in fact, functional in nature. If this can happen, then people without professional or scientific training may be even more prone to error. Any sign of confusion or mental lapse in an elderly person may be erroneously taken as “proof” of senility.

Let’s consider some of the common mistakes:
• Few of us are at our best mentally when our bodies are beset by illness, distress or fatigue.
• We tend to be more charitable to ourselves than we are to old people. Yet many so-called “senile” qualities of thought and behavior are really associated with states of poor health, little different from our own.
• Malnutrition is a common cause, whether from a bad or inadequate diet.
• The prolonged deprivation of sleep can affect both behavior and proper functioning of the mind in all of us.
• Physical disorders such as heart or kidney illness may upset the normal rhythm of bodily functioning and may result in the accumulation of toxic body products.
• Drugs administered to treat a physical condition may result in a measure of drowsiness, agitation, or confusion resulting in society mislabeling and thereby suggesting he or she may be genuinely “senile.”

Frequently the signs of “senility” disappear rapidly when the physical problem has been attended to. In my long career as a Registered Professional Nurse I have had the pleasure of talking with numerous recuperating old persons who but a few days previously had been admitted to a geriatric facility and diagnosed as hopelessly “senile.”
A person who appears senile may be tormented with grief and anxiety. His “demented” state may have been brought about by emotional pain. Loss and grief are frequently common in old age as death removes loved ones. An old person may have suffered other significant losses of occupation, residence, physical mobility, belonging, or usefulness, all of which produce a grief response that can mimic symptoms perceived as early signs of dementia. The question that begs asking: is there a solution and hopeful outlook?

Research has demonstrated improvements in mental and physical functioning when the aged individual who has been declared “senile” is placed in a socially enriched environment. Although impaired brain tissue may not always be reparable, the individual has the opportunity to be motivated and to make better use of his/her remaining functions with the aid of caring professionals, a loving family and, if available, a significant other. Good nutrition, careful use of medications and exercise can also dramatically modify this condition.

There is great satisfaction in seeing dignity and self-esteem return to an old man or woman who has been treated with respect and an understanding of that old person”s dilemma.
Consider: Before affixing that label, remember that poor health and senility are not always one and the same.
Consider: Every day can be a cause for celebration.
Consider: Many of the difficulties encountered by old people are caused or intensified by a lack of basic amenities.
Consider: Social connectivity and a healthy physical environment that meet the old person at least halfway do much to sustain self-respect, morale and purpose to live.

Addendum: I have been using the term dementia because it is in general use. However it is important to know that the term has been discontinued. In 2010 the American Psychiatric Association posted in the DSM-5 (Diagnostic Statistical Manual) the new terminology for dementia as neurocognitive disorder (Mild, Moderate, etc.).

Thoughts on Therapeutic Touch and its Application to Unrelieved Pain
by Sheldon Ornstein Ed.D, RN, LNHA

Western clinicians are beginning to embrace Eastern healing modalities more than ever especially in regard to patients with unrelieved pain. According to Maureen Foye, an RN employed at the in-patient pain management program at Spaulding Rehabilitation Hospital in Boston, “many people don’t understand the role that Eastern healing can play in the management of pain.” Foye began working with patients in severe pain after being exposed to the principles of therapeutic touch. She has now come full circle, instructing other practitioners in the value of these principles with plans to conduct further research into the clinical effectiveness of energy healing and therapeutic touch associated with the field of pain management. Many patients with chronic pain tend to isolate themselves. A major focus of the program is to therefore create community among her patients.

Part of her protocol is (1) to teach her patients that they are not the only ones in the world with chronic pain and (2) to learn how to cope with that pain, to manage it and live with it. Unfortunately for many patients who have isolated themselves, pain has kept them from socializing with others.
But with the use of various physical therapy and Eastern modalities utilized at Spaulding, patients claim pain no longer controls their lives the way it used to.

According to one physician by the name of Dr. R. Armen, a favorite exercise he employs to help people get and stay healthy for a lifetime is called The Fork in the Road…a connection to energy and healing.
“Vividly imagine a fork in the road with two paths. To the left, imagine a future of unrelieved pain. If you don’t care about your brain and body and just keep doing what you’ve always done, what will your life be like in a year…in five years…in ten years? To the right, imagine a future of health. Imagine your body and spirit getting healthier and all that goes with that…mental clarity, better energy, a brighter mood, greater memory, healthier skin and a healthier brain.”
Therefore successful health dramatically can increase when you are connected with others and when you continue receiving constant encouragement to stay focused ad motivated toward your goals.

Here are some final thoughts on what I believe is optimal aging (since this is a column on wellness and aging).
(1) A means to continue functioning at the highest possible level in the context of inevitable limitations that growing old places on us (2) In other words, getting the very best out of what is possible for as long as possible (physically, cognitively, socially and psychologically).

Gerontological Nursing and Aging
by Sheldon Ornstein Ed.D, RN
Nurses play a critical role in caring for sick and frail older adults and in promoting healthy aging. Yet not only is there a general shortage of nurses in the United States, even fewer nurses have specialized geriatric skills. Of the 2.56 million registered nurses in the U.S., less than 15,000 are certified gerontological nurses, and of the 111,000 advanced practice nurses, only 3,500 are gerontological nurse practitioners or clinical specialists. This presents a looming crisis as fewer gerontological nurses will be available to care for a growing number of older adults. Equally important, the faculty to train future nurses in geriatrics is in extremely limited supply, and new research on health needs of older Americans is urgently needed. To address the critical shortfall, nursing schools are increasing the profile of gero-nursing to:
1) attract new talent to the field
2) create collaborative relationships between academia and community health care institutions
3) generate new projects for moving evidence-based knowledge into practice, and
4) launch research that leads to more effective and efficient care for our country’s older adults.
Since 1995, the John A. Hartford Foundation has provided several million dollars to the Hartford Institute for the training of nurses in geriatric nursing. But building a geriatric nursing capacity requires institutional commitment with multiple strategies. Any university that seeks to create strong geriatric nursing education and research programs should therefore focus on several of these strategies:
• Build a critical mass of faculty interested in geriatrics via recruitment and/or cross training.
• Prepare future academic leaders through focused recruitment to geriatric nursing at the BS as well as the doctoral levels by employing pilot programs that stress the essentials needed in our nation’s nursing schools.
• Develop research programs that generate new knowledge about effective care systems and treatments to meet the needs of the elderly.
• Foster community partnerships for the dissemination of best practices in the field of geriatrics.