Michele:  Thank you for this excellent information.  I am forwarding it to
the list.  I am aware that some people have to pay by the message but this
is EXACTLY the type of message we need and what many people who have joined
this list are looking for.  You are definitely an asset to our group.
Thank you.
============================================================================
Barbara Patterson                               [log in to unmask]
HSC 2J22                                        905-525-9140, ext. 22403
                        School of Nursing
============================================================================
 
---------- Forwarded message ----------
Date: Mon, 29 Nov 1993 10:26:24 -0500 (EST)
From: Michele Sears <[log in to unmask]>
To: Barbara Patterson <[log in to unmask]>
Subject: Re: Welcome
 
Barbara,
I am attaching the latest articles (from Mednews) dealing with Parkinson's
desease. In the future, I would be happy to forward to you anything on
this desease. Some list participants are on commercial online services
(Prodigy, Compuserve) and those services do charge for receiving internet
messages - I know I subscribe to them also - This is why sending the whole
newsletters to the list would be too expensive for recipients. If I did
send you what I can gather, you could then decide whether or not to post
to the list. What do you think?
 
Michele K. Sears
Email/adresse electronique: [log in to unmask]
 
 
 
------------------------------
 
Date: Thu, 14 Oct 93 06:53:33 MST
From: mednews (HICNet Medical News)
To: hicnews
Subject: The Patient-Doctor Relationship in Parkinson's Disease
Message-ID: <[log in to unmask]>
 
            Two Way Communication: The Patient-Doctor Relationship
                            in Parkinson's Disease
 
    Robert G. Feldman, M.D. Chairman, Department of Neurology Professor of
  Pharmacology Boston University School of Medicine and The Ellen and Harold
    Wald Parkinson's Disease Unit Boston University Medical Center Hospital
                                  Boston, MA
 
          Copyright 1993, American Parkinson Disease Association, Inc
                          Reproduced with Permission
 
 
 
 
Parkinson's disease (PD) is a disturbance of motor function which affects the
movement ability of the patient. Every effort must be made from the beginning
of a relationship between the neurologist, his/her staff, and the patient and
the significant others of her/his family to make sure that a two-way
communication is established and maintained. This is very important in the
successful long-term management of PD.
 
By the time a formal diagnosis of PD is made, many patients have already
experienced changes in their muscle tone and have noted subtle impairments.
The previously untreated patient comes to the neurologist with great anxiety.
It may take one or more years of medical visits before an actual diagnosis can
be established. During the time of early or uncertain diagnosis, patients may
fear that they have brain tumors or some other neurological disease. For some,
a definitive diagnosis of PD may be a relief to receive explanations for their
symptoms and be given guidance and direction on how to live well, despite the
diagnosis of PD.
 
Most patients, when initially diagnosed with PD, have little understanding of
this condition, and do not know what to expect. Therefore, they should not be
simply told "you have Parkinson's disease, here's your prescription, come back
for an appointment in 6 months to a year." This can be overwhelming for many
patients who feel intimidated by the neurologist and leave the office
devastated. Personal discussion with a neurologist and/or a nurse practitioner
is absolutely necessary in the period immediately following the initial
diagnosis of PD.
 
Ample opportunity for asking questions is a must. Reading general articles
about PD may be very frightening in the early stages. Carefully selected
written materials appropriate to the patient's stage of PD and concerning
current questions should be provided to the patient and his/her family
 
The physician and other members of the health care team can use the
educational background or vocational interests of the patient to find a common
ground for improving communication, and thistle enhance the understanding of
information presented to the patient regarding treatment and prognosis
including how to use the beneficial effects of medications and other
treatments and how to avoid adverse side effects which detract from
therapeutic results. It is useful to explain the disease process and treatment
approaches in a way to which the patient can relate often using analogies and
diagrams rather than the highly scientific jargon comprehensible only to the
"insider" health care professional. When communicating, a patient should not
allow the physician to assume prior knowledge regardless of the patients
profession or education level. A patient must ask for clarification seeking
explanations direction and coaching. It is often the most sophisticated
patient who needs the most explicit directions, reassurance and support but
who is embarrassed to ask questions.
 
The patient should be informed about the nature of each of the various
medications used to treat PD and what to expect from each dose taken. The most
common side effects and possible adverse reactions should be described and the
patients should be taught to recognize when they have signs of being either
over or under medicated. The overall goal of the educational component is to
provide information needed for decision making and for developing optimal
self-care strategies so that life can go on as normally as possible.
 
Each patient as well as each family member will have different medical and
psychosocial needs depending on past history current problems and how well
they have previously coped with stressful life events. Beginning with the
initial contact with a neurologist it is important that the person with PD
become an active partner in the treatment strategies rather than a "victim."
The principal goal for physicians and other care givers is to understand the
impact of the disease on the individual personal and to anticipate the
problems of the patient and his/her family, while guiding them to helpful
solutions throughout the life-long course of PD. The patient and his/her
family must develop and retain, as much as possible, a sense of control over
his/her life's plan. This is accomplished by learning the importance of
acquiring as much knowledge as possible about his/her PD and its treatment.
 
Family roles and responsibilities are often changed when a member who usually
cares for others needs their support and assistance. Thus, the role of parent
and child may be reversed in that the child may need to become a primary care
giver when a patient with PD is perceived as disabled. This role reversal
between parent and child may become stressing for all parties involved, unless
a honest redefinition of responsibilities occurs. One method of dealing with
issues of role shifting and role reversal is to provide an opportunity for
frank discussion and to consider the reality of who has to do what for whom
and when, from a practical point of view, regardless of place in the family.
Experience has shown that most families feel comfortable about addressing
these types of issues, and often, in fact, are not aware that role changes are
producing stress in the family environment.
 
It is important at the outset of treatment for the patient to learn how to
accept the assistance, understanding, and cooperation of other members of
their family and social network. The patient and his/her PD must be considered
in the context of the rest of his/her family environment, educational and work
background, personality, and previous approaches to problem solving. This will
include an understanding of the patient's self-image, and the intensity and
strength of family relationships. The complexity of PD and its management
represent numerous stresses. Some patients have not developed an effective way
of coping for adapting to changes in life's circumstances, whether it is PD or
routine life conditions. When a patient is unable or unwilling to accept the
problem, he/she may attempt to place the responsibility for their treatment
onto family members and health care providers.  In  the  long  run,
management  of  PD  is  usually   more   successfu for the patient  who  has
effective  techniques  for  coping,  who  acquires   new   in formation,
learns how  to  apply  it  to  the issues which arise living with PD, good
attitude,   and   an   actively   participating relationship with the  care
system, including his/her  physician.  In  otherwords,   gaining   control
over    his/he situation contributes to  the  overall  outcome of the care
program.
 
When  things  do  not  go  well   in   the course of  managing  PD,
frustration,  disappointment,  despair,  and  often   bitterness  develop.  An
inventory   should   be made of  the  specific  activities  the  patient
finds  difficult  to  perform,  those which interfere with his/her ability to
perform  work  tasks,  and  those  which  alter his/her  physical  appearance.
A   specifically  perceived  disability   becomes   the "target"  for
therapy,  to  be  used  as  a measure  of  efficacy  of   the   treatment.
 
Otherwise,  one  does  not  know   what   to expect from the use  of  a
particular  dose of  medicine.  Thinking   that   each   dose will  simply
eliminate  the  disease,   and not recognizing that there  are  periods  of
effect  to   be   accomplished   from   each dose,  may  result  in
disappointment.  Improvement   after   doses   of    medication can be looked
for  in  areas  of  functioning, such as:  disturbances  of  motor  control,
gait, posture,  arm  swing,  dressing, facial  expression,  volume  of
speech,  as well as conversational interaction.
 
Coming   to    an    agreement    with    a patient  and  his/her   family
about   the priority of certain "targets" to  be  established  enables  the
physician   and   the patient  to  share  expected    goals of specific
medication dosages and    ther-apeutic  recommendations.       Lack      of
agreement  about  this  will    result    in misunderstanding     and
disappointment about the  outcome,  since  a  total  "cure" may  not   be
achieved   as   anticipated. The  patient  and  his/her  family   usually have
a  concept   of   what   they   expect from  the  physician   and   other
members of   the   health   care   team,   and   the physician  usually
expects  advice  to   be followed.  Both  parties  must   make   certain that
the  instruction  that  is  given during an office visit  is  heard,  listened
to,  understood,  and   retained   for   appropriate  application  in   the
long-term management of PD.
 
Jane  E.  Brody  (New  York   Times,   September 16, 1992)  considers  the
failure  of patients to follow  doctor's  orders  as  one of the most  serious
and  costly  situations in America's health  care.  She  states  that 30-50%
of   all   prescriptions   dispensed by   doctors   are   taken   incorrectly
by patients.  Many  prescriptions  are  actually not even filled.  When  it
comes  to  making behavioral  changes,  half  of  all  patients either neglect
to do  so,  or  do  so  incorrectly.  The   patient   usually   gets   the
blame for failing to follow the doctor's  orders,  and  may  even  be
scolded,  One   of the explanations  given  by  Brody,  is  that physicians
often  fail  to   take   adequate time  and  show   compassion   in
prescribing therapy, leaving  the  patient  with  the impression that it does
not matter  all  that much.  A  patient   may   misunderstand   the doctor's
advice,  or  forget  what  was  said minutes  after  leaving   the   office.
The doctor   may   imply   exaggerated   benefits of therapy;  the  patient
may  stop  medications  when  rapid   improvement   does   not occur at  a
given  dose  level.  The  doctor may minimize, or fail  to  mention  side
effects,  prompting   the   patient   to   stop when  new   discomforts
appear.   In   both instances,   premature   discontinuation   of medication
occurs,  not  giving  the  drug  a chance    to    work.    Brody
recommends that  patients  use  a  tape  recorder,   and write   down   what
the    doctor    says, repeating  instructions  out  loud   to   the doctor
in  order  to   make   certain   that everyone   is   in   agreement   and
understands  the  plan  of   treatment   and   the specific issues discussed.
 
It  is  useful  to  videotape  sessions  and interactions of the patient,
his/her  family, and  physician  when  a   particularly   complex   problem
is   being   explained   and dealt   with.   The   video-tape    can    be
reviewed over  and  over  again  to  pick  up details  missed  while  the
interaction   of the   session   may   have   provoked    emotions that
interfered  with  the  perception of  what   was   actually   said,   by
whom about   what.   The   technique   of    video recording   review,   or
feed-back,    has been  extremely  useful   in   solving   problems  of
family  stress,   whether   caused by  PD   or   anything   else.   By
viewing his/her  appearance  on  the  video   screen, the  patient  can  see
that  the  medication can  produce  a   "normal"   appearance,   so that when
there  is  an  "off"  time  he/she can remind himself that being  "off"  is
not forever.  Insight  can  be  gained  by  video recording  feedback  to
help  reduce   inaccuracies  of  perceptions  about  PD  and  to sort  out
misconceptions  arising  from  inadequate communication.
 
Two-way    communication    occurs     when Party  A  sends  a  message   and
Party   B receives it;  thus,  Party  B's  response  to the  message  of
Party   A   is   expressed and   comprehended   by   Party   A.   Agreement
about   the   message   depends   upon use   of   words   understandable   by
both parties  and  a  sharing  of  mutual   objectives in solving problems. In
the  effort  to solve   problems   in   the   management   of PD, patients,
their significant  others,  and caregivers  must   understand   each   other.
 
By  presenting   clear   questions   to   the neurologist    and    making
sure    clear answers   are   received,   understood    and remembered,  much
can   be   done   to   improve  the  long-term   care   for   the   PD
patient. To  do  otherwise,  wastes  the  opportunity to utilize the potential
wealth  of knowledge   and   experience   available   at this  time.  Patients
and  doctors  can  and should learn from each other.
 
                         For more information contact:
 
               The American Parkinson Disease Association, Inc.
                                 60 Bay Street
                           Staten Island, NY  10301
                               Tel 800-223-2732
                               FAX 718-981-4399
 
 
 
 
------------------------------
 
Date: Thu, 14 Oct 93 06:54:06 MST
From: mednews (HICNet Medical News)
To: hicnews
Subject: New Book: Adaptive Technologies for Persons with Disabilities
Message-ID: <[log in to unmask]>
 
         NEW BOOK ON ADAPTIVE TECHNOLOGY FOR PERSONS WITH DISABILITIES
 
          "ADAPTIVE TECHNOLOGIES FOR LEARNING AND WORK ENVIRONMENTS"
                               JOSEPH J. LAZZARO
                       THE AMERICAN LIBRARY ASSOCIATION
                             50 EAST HURON STREET
                               CHICAGO, IL 60611
                              PHONE: 312-280-5108
                              ISBN: 0-8389-0615-X
                                  PAGES: 251
                               PRICE: $35.00 US
                      TOLL FREE ORDER LINE: 800-545-2433
              PRESS #7 FROM THE VOICE MENU FOR THE ORDERING DEPT.
 
 
     "Adaptive Technologies for Learning and Work Environments" by
Joseph J. Lazzaro is a 250 page guide on how to adapt personal computers for
persons with disabilities. The book concentrates on using computers to access
information, which is critical to top performance in the office or the
classroom. The book is intended for individuals with visual, hearing, motor,
and speech impairments. The text can instruct individuals, as well as office
administrators, rehabilitation professionals, librarians, managers, teachers,
human resource professionals, computer consultants, network administrators,
and anyone else who relates to persons with disabilities. Managers and
supervisors who need to provide adaptive technology to comply with the
Americans with Disabilities Act (ADA) will find much useful information within
the text. For organizations concerned about inexpensively complying with the
Americans with Disabilities Act, the guide will inform and instruct you about
the myriad adaptive technologies that are difficult to locate, technologies
that are being employed today at home, school, office, and public facilities.
     The book spotlights and explains devices that verbalize and magnify the
computer screen, printers that print hard-copy braille, paperless braille
displays that read the computer screen, computers that read printed books
aloud or talk on the telephone, even devices that command computers through
the spoken word or Morse Code. The text also discusses how to turn an adapted
personal computer into a virtual library of information by linking with local
area networks, accessing online databanks, or using compact disk reference
systems. Included are lists of bulletin boards, online services, CDROM
providers, as well as public access Internet sites. The book also describes
how to analyze the needs of disabled users to provide the appropriate
assistive technology, as well as how to furnish training and technical
support. Sources of financial aid are also presented. Throughout the book,
more than 120 specific adaptive products are described as examples of the
innumerable devices available. Practical, how-to-do-it sections explain
installation procedures and provide examples of how to use different
technologies. Extensive end-of-chapter lists of adaptive technology vendors
together with extensive appendixes provide names and addresses of useful
resources. These include organizations, vendors, conferences, journals and
newsletters, and programs that can further assist in finding out more about
adaptive technology and its applications. A subject and product index provides
quick access to the many topics within. The book will be available in
alternative accessible formats. The text is written in clear language, without
resorting to jargon and technical terms.
 
Table Of Contents
 
Figures
Preface
Introduction
 
1 Breaking Barriers with Adaptive Technology
     Blindness and Visual Impairment
          Barriers for Persons Who Are Blind or Visually Impaired
          Overview of Adaptive Technologies for Persons Who Are
               Blind or Visually Impaired
     Deafness and Hearing Impairment
          Barriers for Persons Who Are Deaf or Hearing Impaired
          Overview of Adaptive Technologies for Persons Who Are
               Deaf or Hearing Impaired
     Motor and/or Speech Impairment
          Barriers for Persons Who Are Motor and/or Speech
               Impaired
          Overview of Adaptive Technologies for Persons Who Are
               Motor and/or Speech Impaired
     The Americans with Disabilities Act
          On-the-Job Discrimination
          Public Accommodations and Transportation
          ADA Technical Assistance Centers
     Conclusion
 
2 The Personal Computer
     From Abacus to Apple
     Computer Hardware
          The Central Processing Unit
          Input Devices
          Output Devices
          Input/Output Ports
          Modems
          Computer Memory
          Storage Devices
          Expansion Slots and Circuit Cards
     Software
          The Disk Operating System
          Applications Programs
     Personal Computer Manufacturers
          The Apple IIGS
          The Apple Macintosh
          IBM Pc and Compatibles
          Laptops and Notebooks
     Selecting a Personal Computer
 
3  Technology for Persons with Vision Impairments
     Speech Synthesis
          Internal Speech Synthesis Hardware
          External Speech Synthesis Hardware
          Speech Synthesis Software
          Screen Readers for Graphics
          Other Adaptive Speech Applications
     Magnification Systems
          Optical Aids
          Large Monitors
          Closed Circuit Television Systems
          Software-Based Magnification Programs
          Hardware-Based Magnification Systems
     Braille Systems
          From Early Braille to Computer Technology
          Braille Translation Software
          Braille Printers
          Refreshable Braille Displays
          Pocket Braille Computers
     Optical Character Recognition Systems
          From the Kurzweil Reading Machine to Today's OCR
Devices
          Scanning Text into a Word Processor
     Products for Persons with Vision Impairments
          Speech Synthesis Providers
          Magnification System Providers
          Braille Printer and Display Providers
          Optical Character Recognition System Providers
 
4  Technology for Persons with Hearing Impairments
     Text Telephones
          Talking on a Text Telephone
          Text Telephones and the ADA
          Braille Text Telephones
          Relay Services
     Facsimile Communication
     Computer-Assisted Access
          Baudot/ASCII Modems
          Text Telephone Software
          Talking on a Baudot/ASCII Modem
          Visual Beep Indicator Software
          Computer-Aided Transcription
          Computerized Sign Language Training
     Signaling Systems
     Captioning Systems
          Making Captioned Videotapes
     Electronic Amplification Systems
          Hearing Aids
          Assistive Listening Devices
          Telephone Amplification Systems
     Products for Persons Who Are Deaf or Hearing Impaired
          Text Telephone Providers
          Computer-Based Access Product Providers
          Sign Language Training Software Providers
          Signaling System Providers
          Captioning System Providers
          Electronic Amplification System Providers
          Deaf-Blind Product Providers
 
5 Technology for Persons with Motor and/or Speech Impairments
     Adapted Keyboards
          Keyboard Keyguards
     Keyboard Modification Software
          Macro Software
          Sticky Key and Key Modifier Software
     Alternative Input Systems
          Adapted Switches and Scanning Keyboards
          Morse Code Systems
          Word-Prediction Software
     Voice Recognition Systems
          Voice Recognition Hardware
          Installing and Training Voice Recognition Software
     Alternative Communications Devices
     Environmental Control Systems
     Products for Persons with Motor and/or Speech Impairments
          Adapted Keyboard Providers
          Keyboard Modification Software Providers
          Alternative Input Hardware and Software Providers
          Voice Recognition System Providers
          Alternative Communication System Providers
          Environmental Control System Providers
 
6 Applications for Adaptive Technology
     Local Area Networks
          Network Hardware
          Network Software
          Installing Adaptive Technologies on a Local Area
               Network
     The Online World
          Online Services
          Bulletin boards
          Electronic Mail
          Fax
          Live Chatting Online
          Electronic Conferencing
          Calling an Online Service
          The Internet
          Interfacing Adaptive Technology for Online Services
     Compact Disks
          CD-ROM Hardware and Software
          Interfacing Adaptive Technology with a CD-ROM
     Telecommunications Services and CD-ROM Products
          Online Service Providers
          Disability-Related Bulletin Board Providers
          Public Access Internet Sites
          CD-ROM Providers
 
7 Rehabilitation Engineering and Training
     Rehabilitation Engineering
          Job-Site Analysis
          Coordinating the Adaptation of the Workplace
     Training
          Classroom Training
          On-the-Job Training
          Continuing Training
          Training Materials
     Technical Support
          Vendor Technical Support
          Third-Party Technical Support
          Users' Groups and Special Interest Groups
          Help Screens
 
8 Funding Adaptive Technology
     Cost-Savings Ideas
     Personal Funding Sources
          Family and Friends
          Lending Institutions and Credit Unions
          Credit Cards
     Government-Sponsored Funding Sources
     Private-Sector Funding Sources
     Financial Aid Resources
          Address of Funding Sources
          Books on Funding Sources
 
Appendixes
     A    Organizational Resources for Persons with Disabilities
     B    Assistive Technology Conferences
     C    Journals and Newsletters on Assistive Technology
     D    Technology Assistance States
 
Index
 
Figures
     1 Personal Computer Checklist
     2 Rehabilitation Engineering Checklist
 
                      Ordering Instructions
 
"Adaptive Technologies For Learning And Work Environments"
Joseph J. Lazzaro
The American Library Association
50 East Huron Street
Chicago, IL 60611
Phone: 312-280-5108
ISBN: 0-8389-0615-X
Pages: 251
Price: $35.00 US
Toll Free Order Line: 800-545-2433
Press #7 from the voice menu for the ordering dept.
 
               INTERNATIONAL ORDERING INSTRUCTIONS
 
Eurospan
3 Henrietta Street
Covent Garden London England WC2E8LU
Phone: 011-44-71-240-0856
 
Eurospan handles Europe, United Kingdom, Africa, and Israel.
 
 
 
 
 
 
Health InfoCom Network News                                            Page 30
Volume  6, Number  6                                            March 20, 1993
 
               Progress in the treatment of Parkinson's Disease
                         For more information contact:
                   Heather Magotiaux, Communications Officer
                          Office of Public Relations
                          University of Saskatchewan
                                (306) 966-6204
 
People who have early Parkinson's disease do not benefit from alpha-tocopherol
(vitamin E) treatment; however, they do benefit from the drug deprenyl
(selegiline), which has been shown to delay the onset of disabling symptoms.
These findings, reported in the January 21, 1993 edition of the New England
Journal of Medicine, are a result of the largest controlled clinical trial
ever conducted for Parkinson's disease, a progressive neurological illness
affecting hundreds of thousands of people.  The clinical  trial began in 1987
and interim results were reported in the New England Journal of Medicine in
1989.
 
Dr. Ali Rajput, Department of Medicine (Neurology), heads a research team at
the University of Saskatchewan which is participating in this 28-centre study.
He says the results of the study indicate deprenyl should be considered for
the initial treatment of early Parkinson's disease.
 
The study of 800 patients with early Parkinson's disease revealed that alpha-
tocopherol (2000 IU daily), an active component of vitamin E, failed to
improve the signs and symptoms of early Parkinson's disease and did not slow
the progression of illness; however, deprenyl (10 mg daily) significantly
delayed the time until levodopa therapy was required to treat emerging
disabilities. (Levodopa has been the mainstay of treatment for Parkinson's
disease to suppress many of the symptoms, but its effectiveness diminishes
with time and its use is associated with adverse effects.)
 
Research subjects who received deprenyl (regardless of tocopherol treatment)
were able to function without levodopa for a projected average of nearly nine
months longer than research subjects who did not receive deprenyl (24 months
to a predetermined point of disability with deprenyl versus 15 months without
deprenyl).  Deprenyl was also found to produce a slight improvement in the
clinical features of early Parkinson's disease, including shaking (tremor) and
slowness (bradykinesia).  Side effects associated with deprenyl were minor and
infrequent.
 
These conclusions are the result of a systematic evaluation of deprenyl and
tocopherol in the DATATOP (Deprenyl and Tocopherol Antioxidative Therapy of
Parkinsonism) clinical trial conducted by the Parkinson Study Group and
sponsored primarily by the National Institute of Neurological Disorders and
Stroke (NINDS) of the National Institutes of Health.  The trial was conducted
 
Health InfoCom Network News                                            Page 31
Volume  6, Number  6                                            March 20, 1993
 
by 28 study sites in the United States and Canada, and was coordinated through
operation centres at the University of Rochester Medical Centre in Rochester,
New York.  More than 100 investigators, coordinators and consultants, who had
been working together since 1985, participated in the study.
 
There has been a keen interest in the potential benefits of tocopherol and
deprenyl in slowing the clinical progression of Parkinson's disease, says
DATATOP's principal investigator, Ira Shoulson, MD, professor of neurology at
the University of Rochester Medical Centre.  Our study has shown that deprenyl
appreciably delays the onset of disabling features of Parkinson's disease,
though the mechanisms by which deprenyl produces these beneficial effects
remain unknown.
 
The failure of vitamin E to delay the need for levodopa is disappointing, says
the study's co-principal investigator, Stanley Fahn, MD, professor of
neurology at Columbia-Presbyterian Medical Centre in New York City.  RThe
antioxidant influence of vitamin E appears inadequate to slow the pace of
early Parkinson's disease; however, other antioxidant medications that act
earlier in the course of nerve cell dysfunction may eventually prove
beneficial.  Vitamin E did not favourably influence the course of early
Parkinson's disease, but the effects of this antioxidant on the general health
of our patients needs to be studied further.
 
The preliminary findings of the DATATOP trial that were reported in 1989
prompted a modification of the design of the trial in order to better assess
the short-term effects of initiating and withdrawing deprenyl treatment.
RDeprenyl, an inhibitor of the enzyme monoamine oxidase, clearly produced a
slight improvement of the symptoms and signs of early Parkinson's disease, and
this benefit faded by two months after withdrawal of deprenyl,S says Dr.
Shoulson.  RIronically, the slight but detectable benefits we observed when
subjects began deprenyl confound our ability to determine whether this
medication merely treats the symptoms of Parkinson's disease or possibly slows
the underlying progression of this brain disease.
 
This is the largest and most rigorous clinical research study ever undertaken
to treat neurodegenerative disorders such as Parkinson's disease, and the
results are both gratifying and sobering,S says Dr. Carl Leventhal, director
of the NINDS Demyelinating, Atrophic and Dementing Disorders Division.
RAlthough some tangible gains for patients and families with Parkinson's have
been achieved, more clinical trials like DATATOP are needed in order to
develop drugs that slow or halt nerve cell degeneration in Parkinson's disease
and in related neurodegenerative disorders,S he adds.
 
Investigators in the Parkinson Study Group continue to follow the research
subjects in DATATOP to determine the longer-term effects of deprenyl alone and
 
Health InfoCom Network News                                            Page 32
Volume  6, Number  6                                            March 20, 1993
 
in combination with levodopa therapy on the course of Parkinson's disease.
Other studies of promising treatments for Parkinson's disease are under way or
planned.  Drs. Shoulson and Fahn emphasize that the lack of conclusive
evidence of a protective effect of deprenyl justifies further placebo-
controlled trials of other promising agents in the treatment of early
Parkinson's disease.  For example, Dr. Rajput has recently received a research
grant to study the effects of lazabemide, which is another inhibitor of
monoamine oxidase.
 
                                 STUDY DESIGN
 
Eight hundred subjects with early signs of Parkinson's disease were enrolled
between September 3, 1987 and November 15, 1988 and randomly assigned in a 2x2
factorial design to receive: 1) deprenyl, 2) deprenyl and tocopherol, 3)
tocopherol, or 4) placebo.  The subjects were systematically evaluated at
approximately 3-month intervals and followed until their illness became
disabling enough to require levodopa therapy.  Because the study was double-
blind, neither patients nor investigators knew which treatments were being
administered.  The design of DATATOP was modified in 1989 to determine the
effects of withdrawing experimental treatments over a two-month period.
 
                             STATISTICAL FINDINGS
 
Two hundred and two subjects were assigned to deprenyl, 197 subjects to
deprenyl and tocopherol, 202 subjects to tocopherol, and 199 subjects to
placebo.  During an average 14 months of follow-up, the end point of
disability was reached by 80 subjects on deprenyl, 74 subjects on deprenyl and
tocopherol, 109 subjects on tocopherol, and 113 subjects on placebo.  Studies
assigned to deprenyl (regardless of tocopherol) were estimated to reach the
end point of disability about nine months later than subjects not assigned to
deprenyl.  The benefits of deprenyl were strongest during the first 12 months
of therapy but thereafter began to wane.  The adverse effects of deprenyl were
minimal and infrequent in these DATATOP subjects who did not receive levodopa.
However, the combination of deprenyl and levodopa may be more prone to cause
adverse effects.
 
                       HOW DEPRENYL AND TOCOPHEROL WORK
 
Parkinson's disease results primarily from degeneration of the dopamine-
producing cells in the substantia nigra portion of the brain.  Basic and
clinical studies suggest that monoamine oxidase and oxygen-radical formation
are mechanisms of oxidation that may contribute to this degeneration.
Deprenyl is thought to block monoamine oxidase activity; animal studies have
suggested that deprenyl protects dopamine-producing cells that are vulnerable
to injury by certain toxins.  It remains unknown whether the beneficial action
 
Health InfoCom Network News                                            Page 33
Volume  6, Number  6                                            March 20, 1993
 
of deprenyl observed in DATATOP is due to a buttressing of the dopamine
capacity of vulnerable nerve cells, to a bona fide protection of these nerve
cells, or to other factors.
 
tocopherol may protect cells from damage due to oxidative processes,
particularly the formation of oxygen-radicals.  Tocopherol acts relatively
late in the cascade of oxidative events, leaving open the possibility that
other agents acting earlier in the oxidative process may prove beneficial for
Parkinson's disease.
 
                               RESEARCH SUPPORT
 
The DATATOP study was supported primarily by the National Institute of
Neurological Disorders and Stroke of the National Institutes of Health
(Bethesda, Maryland).  Additional support was provided by the following
organizations:
 
Parkinson's Disease Foundation, Columbia-Presbyterian Medical Center
(New York)
National Parkinson Foundation (Miami, Florida)
Parkinson Foundation of Canada (Toronto, Ontario)
United Parkinson Foundation (Chicago, Illinois)
American Parkinson's Disease Association (New York, NY)
University of Rochester (Rochester, NY)