Senior Digest - August/September 2003

For Parkinson's Disease the Best Medicine is Knowledge

Aging is not a disease. If growing older were an illness, then all older adults would have a different "aging disease." All individuals age differently. In addition, within each individual, organs and systems age at a different rate. Aging alone does not cause disease, but getting older increases vulnerability to disease. One such illness whose frequency increases as human beings age is Parkinson's disease (PD). Medical research has shown that virtually every one of us would develop some degree of PD if we lived long enough.

The indistinct line between typical age changes and diseases of old age make some medical diagnoses very chancy. Parkinson's disease is a good example of such a diagnostic dilemma. Were it not for the celebrity status of PD victims like Pope John Paul, Michael J. Fox, and Janet Reno, many people would be only vaguely aware of the disease. Although modern medicine has made faster and more accurate diagnoses of PD possible, a long period of watchful waiting is required before a physician can tell a patient "I think you have Parkinson's disease."

Parkinson's disease, first described in 1817 by London surgeon James Parkinson, imitates many of the symptoms of natural aging. It is very tricky to diagnose PD in its early stages. Such PD symptoms as tremor, loss of hand dexterity, maintaining balance when standing or walking, or stooped posture are not unusual physical characteristics of old age. Early symptoms of PD can also include apathy, anxiety, and depression, falsely believed by many to be additional indications of the natural aging process. When these subtle symptoms worsen, when muscles become more rigid, tremors increase in intensity, and the person demonstrates progressively slower movements in daily activities, it is time to schedule a visit with a physician.

According to the 2000 edition of The Merck Manual of Geriatrics, the PD diagnosis rate in all age groups in the US is approximately 100 cases per 100,000 people. Between the ages of 70 and 80 the number of new PD patients doubles. Parkinson's disease is no stranger to the elderly. It is very difficult to diagnose, not only due to sometimes vague and multi-faceted symptoms, but also because there are no medical tests that present a definitive diagnosis. Blood tests, CT scans, and MRIs reveal nothing out of the ordinary. The physician can only make a diagnosis on the progression of symptoms. Even then, as in Alzheimer's disease, an autopsy is the only way to confirm a PD diagnosis.

There is good news. Medical science is confident that it has pinpointed the cause of PD. The death of nerve cells that produce dopamine, a brain chemical that is important to body movement, leads to symptoms of PD. Even when symptoms are severe enough that a neurologist can make a diagnosis, 10 or more years can pass before the patient faces serious disability. Parkinson's disease slowly depletes dopamine, which travels through the nervous system to signal muscles what to do. Parkinson's disease is a movement disorder whose origin is in the nervous system, not the muscles themselves. Physicians can prescribe a number of drugs that slow physical symptoms by increasing dopamine in the brain. In addition to the family doctor and the neurologist, psychiatrists, physical therapists, and other medical professionals help PD patients lead a more normal life.

There is no cure for the disease but an early diagnosis and a course of treatment tailored to each individual's needs allows PD patients to live a more normal life. Medical science has intensified research that it believes will reveal why the brain cells that produce dopamine begin dying sooner and at a faster rate in PD victims. It is conceivable that sometime in the life of baby boomers, or their children, there will be a cure for PD.

There are no imminent dramatic medical breakthroughs in the search for a PD cure. Nevertheless, patients and families can help themselves. At this time, information is the best medicine available. Most of the remaining years in a PD patient's life involve home caregiving rather than hospitalization. Family members must learn the limits of modern medicine and educate themselves to be competent PD caregivers. There is an overwhelming body of knowledge available to PD patients and their families. Below you will find a very small sample of thousands of PD resources.

Books

One of the most recent (2001) and readable books on PD is Parkinson's Disease: A Complete Guide for Patients and Families. It is an inexpensive paperback published by The Johns Hopkins University Press. It is not necessary to read the book in chapter sequence. Skip around and choose only the chapters that interest you. Do not miss chapter 18. There you will find a well-written question and answer section and a list of additional resources.

Abraham Lieberman, M.D., the national medical director of the National Parkinson Foundation, is the author of Shaking up Parkinson, published by Jones and Bartlett in 2001. This readable and well-organized book gives practical tips for PD patients and their caregivers. Scan the book before buying. Dr. Lieberman uses religious quotes that some readers might find objectionable.

Another valuable book by Dr. Lieberman is Parkinson's Disease: The Complete Guide for Patients and Caregivers, published by Simon & Schuster. The book has been in print for ten years without revision. Despite the book's age, it remains a valuable resource. The appendices contain a comprehensive glossary and a resource guide for those who do not have access to the Internet.

All of these inexpensive soft-cover books are currently in print and available in local bookstores.

Free Publications

Call The National Parkinson Foundation, Inc. (toll free) at 1-800-327-4545 for a free information packet.

Toll-Free Telephone Numbers

For local referral and support group information, call the American Parkinson Disease Association at 1-888-400-2732.

Call the Parkinson's Disease Foundation at 1-800-457-6676 for information on how to submit questions to PDF experts.

Internet Sites

http://www.patient2patient.net/parkinsons_index.php

There are almost a half million Internet search engine listings for Parkinson's disease. This large number of sites makes it next to impossible to find, and trust, an Internet resource that meets the needs of PD patients and their families. The Patient2Patient WebGuide is a wide-ranging collection of PD Internet sites. An annual subscription of $24.99 is money well spent. It entitles the subscriber to download a well-organized 200-page document that evaluates the best PD sites. Easy step-by-step instructions permit users to navigate Internet sites directly from the WebGuide with just a couple of mouse clicks. The cost of the subscription for the Patient2Patient WebGuide includes updates every 90 days. The subscription comes with a money-back guarantee.

There are, of course, hundreds of reputable cost-free Internet sites. You will find three high-quality examples below. Each of these Internet addresses contains easy links to many more sites.

http://www.parkinson.org

The National Parkinson Foundation (Very comprehensive information that is easy
to follow)

http://www.plwp.org

People Living with Parkinson's (Multimedia presentations of general information)

http://www.adaparkinson.com

The American Parkinson Disease Association (Listings of local support groups)