TALKBACK...Including the book by our very own Linda Herman

Shaking Up Life: Parkinson's Disease

http://www.libraryjournal.com/index....cleid=CA267714

Although Parkinson's Disease (PD) is one of the most common neurological disorders, many Americans were unaware of the condition until actor Michael J. Fox revealed his diagnosis to the public in 1998. An estimated 1.5 million people in North America now have the disease, including other luminaries like Muhammad Ali and Janet Reno.

It also is an expensive disease; according to the National Parkinson Foundation, each patient spends an average of $2500 per year on medications alone. The total annual cost to the United States exceeds $5.6 billion.

First identified by physician James Parkinson in 1817, PD is a slowly progressing, degenerative disorder that manifests itself with tremors, stiffness, slowness of movements, slurred speech, and impaired balance and coordination. (PD patients, or Parkinsonians, are often mistaken by the public as being inebriated or mentally deficient.) The disease's progression varies from individual to individual. Some are so mildly affected that they are never diagnosed, while others become completely incapacitated. A small percentage eventually develop dementia. Although primarily found in people over the age of 50, the disease is increasingly affecting younger adults. Fox himself was 30 when he was diagnosed.

Treatments but no cure

What triggers the disease is still unknown; its physical cause—a loss of nerve cells in the substantia nigra part of the brain—was only recognized in 1960. It appears that heredity plays a minor part, if any, in its development. Some medications used in the treatment of mental illness can produce symptoms that mimic PD, and in the early 1980s a "designer drug," MPTP, was found to cause PD in its users. Scientists now theorize that currently unidentified environmental toxins or viruses may also be a factor; a recent report that three other people who worked in the same television studio as Michael J. Fox during the late 1970s also developed PD has excited interest among researchers.

First approved for use in 1970, the drug levodopa is still the best avenue for replacing the brain's lost dopamine and alleviating symptoms. (Without dopamine, signals from the brain cannot "transmit" properly to the body, and movement is impaired.) Research in the last decade has resulted in a better understanding of the disease process and some new drug therapies to enhance levodopa's effectiveness and reduce its side effects.

Complementary therapies such as exercise and fall prevention have only recently been added to the PD treatment regimen. And surgeons are now experimenting with fetal tissue transplants, neuroblation, deep brain stimulation, and pallidotomy as possible treatments. But despite these advances, there is still no known cure.

Collection diagnosis

Because Parkinson's can mimic other neurological disorders (there is no definitive test), it is frequently misdiagnosed by family physicians unfamiliar with the disease; some patients have gone for years before receiving a correct diagnosis. It's important, therefore, for consumer health collections to offer authoritative resources for anxious patients and families seeking reliable information.

Consumer health information on the disease has only begun to emerge since the 1990s, and much of that is far more technical than the lay literature on other health topics. Still, a number of leading experts and pioneers in the field (Abraham Lieberman, William Wiener, and Curt Freed) have recently written authoritative medical guides specifically for PD patients, and libraries should make sure they have these titles in their collections.

Because advances in treatments mean people are living longer than ever before with the disease, and therefore are experiencing more complications, look for books that address these factors as well as discuss psychosocial issues and life skills. Personal narratives that describe how the PD patient or family member cope are also necessary purchases. Supplement your collection with good texts that deal with chronic diseases in general, especially those that emphasize patient control and coping skills, since these volumes are often far more positive in tone than the sometimes grim PD guides.

There are currently few consumer periodicals on PD (most newsletters are only available online via PD associations), and quality up-to-date videos are rare. Starred [* ] items are core purchases for consumer health and most public library collections.

Medical Guides

*Blake-Krebs, Barbara & Linda Herman. When Parkinson's Strikes Early: Voices, Choices, Resources and Treatment. Hunter House. 2001. 270p. illus. bibliog. index. ISBN 0-89793-340-0. pap. $15.95.
The authors, who were diagnosed with PD in their mid-40s, met on an online discussion list and discovered that the disease was becoming increasingly common in a younger population. Their guide incorporates e-mailings from the members of the Parkinson's Information Exchange Network (PIEN), with detailed advice on diagnosis, treatment, and self-help options. The vivid essays, poetry, and stories personalize the disease's impact; the resources section is outstanding.

Cram, David L., M.D. Answers to Frequently Asked Questions in Parkinson's Disease: A Resource Book for Patients and Families. Acorn Pub. 2002. 170p. bibliog. index. ISBN 0-9710988-8-3. pap. $19.95.
Dermatologist Cram has suffered with PD for over 12 years. Drawing on his personal experience and the latest medical research, he answers commonly asked questions submitted to his online column on Agenet.com. Especially helpful is his advice on the importance of the PD patient using an advocate when he or she is hospitalized or is navigating the healthcare system. A glossary and resources listing are included.

Duvoisin, Roger C., M.D & Jacob Sage, M.D. Parkinson's Disease: A Guide for Patient and Family. 5th. ed. Lippincott Williams & Wilkins. 2001. 195p. illus. index. ISBN 0-7817-2977-7. pap. $29.95.
This instructive text updates the 1996 edition with the latest details on the progression of PD treatments, genetics, and molecular biology. The complications of advancing disease are particularly well described. While the reading level is high, the determined reader can find a great deal of detailed information not found in other guides. Duvoisin is a pioneer in the development of levodopa therapy.

Hauser, Robert A. with Theresa A. Zesiewics. Parkinson's Disease: Questions and Answers. 3d ed. Merit Pub. Intl. 2000. 182p. illus. index. ISBN 1-873413-92-0. pap. $17.95.
Although primarily aimed at general clinicians, this manual may be useful for patients wishing more in-depth knowledge than what the consumer guides offer. Hauser (neurology, Univ. of South Florida) covers tests, clinical characteristics, staging and classification, medical management, and issues frequently missed in the lay literature.

*Lieberman, Abraham, M.D. with Marcia McCall. 100 Questions About Parkinson Disease. Jones & Bartlett. Feb. 2003. 160p. index. ISBN 0-7637-2057-7. pap. $16.95.
The national medical director of the National Parkinson Foundation has compiled common questions asked by newly diagnosed Parkinsonians. Lieberman is particularly good at telling patients what they should expect from their physicians, how they can select a competent movement disorders specialist, how they can make the most of living with PD, and what they should know about the new advances in medical, alternative, and surgical therapies. An optimistic resource that should be much in demand.

*Lieberman, Abraham, M.D. Shaking Up Parkinson Disease: Fighting Like a Tiger, Thinking Like a Fox. Jones & Bartlett. 2002. 250p. illus. ISBN 0-7637-1866-1. pap. $18.95.
Lieberman's sympathetic, thorough book explains PD and its symptoms (with steps to alleviate them) and extensively covers treatment options such as drugs and surgery. A plus is the author's discussion of anxiety and depression as a biological rather than a psychological symptom of the disease. Disorders that mimic PD are listed, and questionnaires help readers measure their personal mobility, emotional status, quality of life, and more. Although nonreligious readers may be put off by the biblical quotes, this is still an outstanding text. (LJ 1/02)

*Parkinson's Disease. DK. (ACP Home Medical Guides). 2000. 80p. ed. by David R. Goldman, M.D. & David A. Horowitz, M.D. illus. index. ISBN 0-7894-4169-1. pap. $6.95.
This excellent entry in the American College of Physicians series features DK's typical lush full-color photos and illustrations. The concise text covers types of Parkinson's, causes and characteristics, signs and symptoms, and diagnosis, as well as standard medical and surgical treatments. Especially good are the clearly written evaluation scales for disease assessment.

*Silverstein, Alvin & others. Parkinson's Disease. Enslow Pub. 2002. 128p. illus. bibliog. ISBN 0-7660-1593-9. $20.95.
Although written for children, this reassuring guide is also excellent for adults with limited reading skills. Covering the basics (causes, treatment, symptoms, and progression), the volume also highlights ongoing research, the use of service dogs for Parkinsonians, and PD celebrities such as Michael J. Fox.

Weiner, William J., M.D. & others. Parkinson's Disease: A Complete Guide for Patients & Families. Johns Hopkins. 2001. 272p. illus. index. ISBN 0-8018-6555-7. $45; pap. ISBN 0-8018-6556-5. $15.95.
While somewhat clinical in tone, this guide by the director of the Maryland Parkinson's Disease Center offers excellent current information. Physical, behavioral, and psychiatric signs and symptoms exhibited during mild, moderate, and advanced stages are explained, as are diseases that can mimic Parkinson's. Emphasizing the questions to be asked and the tests that the patient should undergo before a diagnosis is made, the text also discusses the latest drug and surgical treatments, including alternative therapies. (LJ 5/15/01)

Treatment & Therapy

*Argue, John. Parkinson's Disease & the Art of Moving. New Harbinger. 2000. 220p. photogs. index. ISBN 1-57224-183-7. pap. $15.95.
PD destroys the ability of patients to perform many routine physical skills necessary to daily living. Argue, who has taught movement and speech classes for Parkinsonians since 1985, presents ten exercise routines (clearly demonstrated in over 100 photographs) to improve flexibility, balance, coordination, speech, swallowing, and more.

Hutton, J. Thomas, M.D. Preventing Falls: A Defensive Approach. Prometheus. 2000. 115p. illus. bibliog. ISBN 1-57392-761-9. pap. $19.
Falls are a major concern for balance-impaired Parkinsonians as resulting injuries can cause even more disability or even death. Hutton, medical director of the National Parkinson Foundation Center of Excellence at Covenant Health System (Lubbock, TX), briefly explains major causes of falls and what the caregiver or patient can do to anticipate and minimize risks. He includes some assessment tools and a reassuring chapter on how to recover from a fall. A companion video is available.

Leader, Geoffrey & Lucille Leader. Parkinson's Disease: The Way Forward!; An Integrated Approach Including Drugs, Surgery, Nutrition, Bowel and Muscle Function, Self-Esteem, Sexuality, Stress Control and Careers. Denor Pr. 2001. 301p. illus. index. ISBN 0-9526056-8-6. pap. $22.95.
While the British viewpoint may not always translate well, this volume covers alternative treatments for PD, such as chelation therapy, Chinese medicine, electromagnetic therapy, and more. The authors also discuss sexuality and PD, pregnancy, and the role of other healthcare professionals such as osteopaths and physiotherapists in the treatment of the disease.

Rosenstein, Ann. Water Exercises for Parkinson's: Maintaining Balance, Strength, Endurance, and Flexibility. Idyll Arbor. 2002. 244p. illus. index. ISBN 1-882883-49-7. pap. $18.
In her introduction, water aerobics instructor Rosenstein argues persuasively that water exercises can significantly enhance mobility and ease the physical impact of PD, as well as ward off depression and improve self-esteem. She addresses pool safety, drugs, proper attire, equipment, and methods of entering the pool; her exercises are well illustrated.

Coping Issues

Biziere, Kathleen E., M.D. & Matthias C. Kurth, M.D. Living with Parkinson's Disease. Demos Medical. 1997. 160p. illus. index. ISBN 1-888799-10-2. pap. $24.95.
While the first half presents a technical explanation of the etiology, symptoms, and medical and surgical management of PD, this book's real strength lies in the second-half discussion of clinical trials, including points to consider before participating in a clinical trial and lines of research being pursued. An extensive glossary is included.

Caring for the Parkinson Patient: A Practical Guide. 2d ed. Prometheus. 1999. 251p. ed. by Thomas J. Hutton & Ray Lynne Dippel. illus. ISBN 1-57392-684-1. pap. $22.
Sixteen contributed chapters address medical and surgical treatments, physical and occupational therapy to enhance the patient's daily living skills, psychological and cognitive changes caused by the disease, and caregiver issues. Also helpful are the photos and descriptions of adaptive equipment.

Jahanshahi, Marjan, M.D. & C. David Marsden, M.D. Parkinson's Disease: A Self-Help Guide. Demos Medical. 2000. 392p. illus. index. ISBN 1-888799-38-2. pap. $24.95.
This practical handbook gives essential information to PD patients and their families on how best to cope with the life changes brought about by the disease. The authors emphasize patient empowerment through information, resources, and assistive devices.

* Parkinson's Disease and Quality of Life. Haworth. 2000. 223p. ed. by Lucien Cote. index. ISBN 0-7890-0763-0. $49.95; pap. ISBN 0-7890-0810-6. $19.95.
Published simultaneously as an issue of Loss, Grief and Care (2000. Vol. 8, #3/4), this volume features 31 contributors (nurses, doctors, patients, speech therapists, etc.) who cover a wide array of topics about PD not found in other guides: dental health, shortness of breath, sexuality, incontinence, medical expenses and health insurance benefits, tax planning, and occupational therapy, among others. Some essays are more technical, but this is still a valuable resource.

Schwarz, Shelly Peterman. 300 Tips for Making Life with Parkinson's Disease Easier. Demos Medical. 2002. 144p. index. ISBN 1-888799-65-X. pap. $18.95.
Multiple sclerosis (MS) sufferer Schwarz has written similar books on MS and arthritis. Her new guide offers tips, techniques, shortcuts, and resources that can assist Parkinsonians adapt to their environment and maintain their daily personal living skills. She also gives advice to caregivers. While some suggestions are too simplistic to be actually useful, others are concrete and practical enough to help PD patients keep their independence.

Research

*Freed, Curt, M.D. & Simon LeVay. Healing the Brain: A Doctor's Controversial Quest for a Cell Therapy To Cure Parkinson's Disease. Times Bks. 2002. 288p. index. ISBN 0-8050-7091-5. $26.
Freed's absorbing account details his initial involvement with neurology and his later specialization in Parkinson's studies. His use of stem cells in 1994, in which monkeys with Parkinson's-like disease had dopamine cells from embryos transplanted into their own brains, showed great promise for humans. Detailing the outcomes from the human clinical trials, Freed also discusses the ethical and legal issues involved in fetal tissue research, although his bias in favor of this controversial technique is obvious. (LJ 8/02)

Personal Narratives

Fox, Michael J. Lucky Man: A Memoir. Hyperion. 2002. 260p. photogs. ISBN 0-7868-6764-7. $22.95.
Actor Fox hid his PD for seven years before announcing his illness in 1998. He recounts his life from childhood to stardom, his efforts to deny his disease to himself as well as his fans, and ultimately his decision to go public. In a down-to-earth style, Fox reveals his struggles to deal with and find meaning in his changed life.

Grady-Fitchett, Joan. Flying Lessons: On the Wings of Parkinson's Disease. Forge. 1998. 240p. ISBN 0-312-86490-6. $17.95; pap. 2000. ISBN 0-312-86491-4. $12.95.
A successful 47-year-old professional woman, Grady-Fitchett was diagnosed with PD in 1979. Refusing to allow the disease to dampen her positive attitude, she entered clinical trials, remarried, and maintained an independent lifestyle. Ultimately the disease progressed until, in 1996, she was accepted into the University of Colorado's experimental stem cell transplant program. Readers will be inspired by her attitude and disappointed that the book ends before knowing the surgery's outcome. (LJ 10/15/98)

*Havemann, Joel. A Life Shaken: My Encounter with Parkinson's Disease. Johns Hopkins. 2002. 200p. bibliog. index. ISBN 0-8018-6928-5. $24.95.
Los Angeles Times Senior Editor Havemann movingly chronicles the physical and emotional effects the disease has had on his life since his diagnosis in 1990. While he briefly discusses PD's history, possible causes, medical and surgical treatments, and research progress, it is the account of his personal struggle that is the heart of this book. Havemann realistically accepts his condition yet also resists its limitations; his appreciation of life in spite of disability is inspiring. (LJ 3/15/02)

Kondracke, Morton. Saving Milly: Love, Politics, and Parkinson's Disease. Perseus. 2001. 288p. photogs. index. ISBN 1-58648-037-5. $25; pap. Ballantine. 2002. ISBN 0-345-45197-X. $14.
Recounting his first reactions after his wife was diagnosed with PD at age 47, political journalist Kondracke honestly describes his denial and retreat from Milly and his eventual transformation into the role of caregiver and PD political activist. Readers will be moved by his account of Milly's struggle to achieve a decent quality of life through traditional and alternative therapies and later pallidotomy and deep brain stimulation. (LJ 7/01)

Morgan, Eric. Defending Against the Enemy: Coping with Parkinson's Disease. QED. 1997. 122p. bibliog. index. ISBN 0-936609-36-2. pap. $12.95.
A year after Morgan's wife, Audrey, was found to have PD, Morgan was diagnosed as well. His unique perspective as caregiver and patient offers insight into how the disease can manifest itself and progress differently in each affected person. Morgan also details the emotional strains that PD places on relationships. Chapters define medical terms and concepts, and the book ends with tips for the patient and the caregiver.

Associations & Web Sites

*American Parkinson Disease Association. 1250 Hylan Blvd., Staten Island, NY 10305-1946; 800-223-2732; e-mail: apda@apdaparkinson.org; www.apdaparkinson.org.
With 65 chapters and over 800 support groups nationwide, the APDA seeks to "ease the burden and find the cure" for PD. Its web site offers full-text booklets, video rentals, news releases, and reports on current research and political efforts.

Awakenings
www.parkinsonsdisease.com
This comprehensive site lists pertinent materials for patients (support groups and associations; book, audiotape, and video lists; tips for living with PD, etc.), primary care physicians, and PD specialists. The information on assistive technology and resources for caregivers is excellent.

Michael J. Fox Foundation for Parkinson's Research, PO Box 4777, Grand Central Sta., New York, NY 10163; www.michaeljfox.org.
Founded by the actor in 2000, the foundation strives to assist in the cure of PD through an "aggressively funded" research agenda. It also provides information for patients and caregivers about the disease, disability benefits, research, and advocacy efforts. On the web site, the organization's newsletter is available in PDF format, and readers can access excerpts of Fox's book (above) in English and Spanish.

*National Institute of Neurological Disorders and Stroke. PO Box 5801, Bethesda, MD 20824; 800-352-9424; www.ninds.nih.gov.
The National Institute of Neurological Disorders, a part of the National Institutes of Health, conducts and supports basic and clinical research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke. It provides a great deal of free information on the more than 600 disorders, including PD. The web site includes a link to clinical trials seeking volunteers.

*The National Parkinson Foundation. Bob Hope Parkinson Research Ctr., 1501 NW 9th Ave., Bob Hope Rd., Miami, FL 33136-1494; 800-327-4545; www.Parkinson.org.
NPF offers a wealth of information, from the basics to a multimedia library and chat groups. Online full-text pamphlets are available in English and Spanish. Listings and contact information for PD Research Centers of Excellence are noted, and the quarterly Parkinson Report can be downloaded in PDF format.

Parkinson's Action Network. 300 N. Lee St., Alexandria, VA 22314; 800-850-4726; e-mail: info@parkinsonsaction.org; www.parkinsonsaction.org.
Founded by a PD patient, the Parkinson's Action Network seeks to strengthen funding for PD research through grass-roots efforts, legislation, and promoting increased awareness of the disease. PAN's Advocacy Handbook can be downloaded from the web site, which also features a multimedia library.

*Parkinson's Disease Caregiver's Information www.parkinsonscare.com
Caregivers will find crucial information, including links to other caregiving resources, and online chat forums at this NPF-sponsored site.

Parkinson's Disease Foundation. (PDF). William Black Medical Bldg., Columbia-Presbyterian Ctr., 710 W. 168th St., New York, NY 10032-9982; 800-457-6676; e-mail: info@pdf.org; www.pdf.org.
Users of the organization's web site can find support groups, clinical neurologists specializing in PD, an Ask-the-Expert section to which they can submit questions, and a wide variety of other resources. They can also register to receive via e-mail select portions of the Parkinson's Disease Foundation's quarterly newsletter. [The merger between the PDF and the National Parkinson Foundation (NPF) is expected to be completed in early 2003; the new organization will be known as The Parkinson Foundation (TPF).—Ed.]

The Parkinson's Institute. 1170 Morse Ave., Sunnyvale, CA 94089-1605; 800-786-2958; www.parkinsonsinstitute.org.
Founded by neurologist J. William Langston in 1988 after his experience with heroin addicts who had developed PD after taking a designer drug (as he recounted in The Case of the Frozen Addicts, now out of print), the nonprofit organization conducts patient care as well as clinical and basic research. Other services include a Movement Disorders Clinic, a resource library, physical therapy, monthly seminars, and referrals to support groups and specialists. The semiannual newsletter is available online.

The Parkinson's Web spauldingrehab.mgh.harvard.edu/parkinsonsweb/Main/Pdmain.html
From Harvard Medical School's Department of Neurology, this web page provides links to PD national organizations, federal resources, clinical centers, support groups, advocacy groups, and more.

Young Onset Parkinson's Association
www.youngparkinsons.com
Younger Parkinsonians, whose needs and concerns differ from older patients, will find here personal narratives, a reading list, message board, and chat room.

http://www.amazon.com/First-Year-Par...6089236&sr=8-1

will take you to another essential book: The First Year---Parkinson's Disease: An Essential Guide for the Newly Diagnosed(Paperback)
by Jackie Hunt Christensen (Author), Paul, M.D. Tuite (Foreword) "YOU HAVE been told by a health-care provider that you have Parkinson's disease, and you probably have a lot of questions, such as, "What exactly...

Jackie is a highly active member of the community (maybe she posts here, even), including being the PAN State Coordinator of Minnesota and her book should be on this list too

there may be others rhat people here know of...

oh, yeah, Parkinson's Disease for Dummies came out earlier this year, I believe