[Congressional Record Volume 143, Number 40 (Tuesday, April 8, 1997)]
[Extensions of Remarks]
[Page E580]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                      REMEMBERING LARRY BIENSTOCK

                                 ______
                                 

                        HON. CAROLYN B. MALONEY

                              of new york

                    in the house of representatives

                         Tuesday, April 8, 1997

  Mrs. MALONEY of New York. Mr. Speaker, I would like to take a moment 
to honor a courageous man and to try to shed some light on the tragic 
disease which he courageously fought. Larry Bienstock was my 
constituent and lived on the Upper East Side of Manhattan. He attended 
Columbia University and received his law degree from New York 
University. Everyone who knew him, even in passing, was amazed at his 
searing intelligence, his fierce independence, and, above all, his 
unwavering commitment to the cause of dystonia. Unfortunately, Larry 
knew dystonia well.
  Generalized dystonia symptoms began when he was a boy and progressed 
in adulthood to the point of confining him to a wheelchair. Yet despite 
the cruel nature of this debilitating disease, Larry's spirit never 
dampened. During the many years that I knew and worked with Larry, I 
learned directly from him about his battle with dystonia.
  Dystonia is a neurological disorder characterized by severe 
involuntary muscle contractions and sustained postures. There are 
several different types of dystonia, such as: generalized dystonia 
which afflicts many parts of the body and usually begins in childhood; 
focal dystonias affecting one specific part of the body such as the 
eyelids, vocal cords, neck, arms, hands or feet; and secondary dystonia 
which is secondary to injury or other brain illness.
  There is no definitive test for dystonia and many primary care 
doctors have never seen a case of it. These facts coupled with its 
varied presentations make it difficult to correctly diagnose. It is 
estimated that 85% of those suffering from dystonia are not diagnosed 
or have been misdiagnosed. Because of the complications with diagnosing 
the disease, it is difficult to determine the number of people who are 
affected by it. The Dystonia Medical Research Foundation estimates that 
approximately 300,000 individuals in North America alone suffer from 
some form of dystonia.
  Unembarrassed by his condition, Larry and his wheelchair went 
traveling often--to lobby for funding in the halls of the Capitol, to 
the boulevards of Paris, to symposia and social events related to 
dystonia. Throughout his life, Larry was always a fighter for research 
into the cause and treatment of dystonia.
  Larry was active in politics, volunteering on political campaigns and 
with the local Democratic party. He felt that government belonged to 
the people and he always took advantage of opportunities to speak out 
on issues he felt strongly about. He spread his word via the Internet 
and created a web page for the Dystonia Medical Research Foundation, 
which can be found at: http://www.ziplink.net/users/dystonia/.
  Larry saw e-mail and his web page as powerful tools for bringing 
together people concerned about dystonia and for establishing a strong 
collective voice for advocacy. Larry Bienstock provided a model of 
courage, perseverance, and independence.
  When he passed away recently, Larry Bienstock left a legacy of 
activism and advocacy. He taught me about dystonia, and more 
importantly, about the undying human spirit.

                          ____________________