Parkinson's Disease: The Complete Guide for Patients and Caregivers - Softcover

Lieberman, Abraham N.

Softcover

ISBN 10: 0671768190 ISBN 13: 9780671768195

Publisher: Atria Books, 1993

Synopsis

Personal, accessible, informative. A guide for Parkinson patients and their caregivers that addresses the body and the spirit.

Written by an expert team of health-care professionals-including a neurologist, a social worker, a nurse practitioner, a physical therapist, and an attorney/financial planner-this guide takes every aspect of living with chronic degenerative illness into consideration.

You will find the answers to your most urgent questions:

-How can I overcome the functional limitations of Parkinson's disease?

-What are the pros and cons of various medications commonly used to treat Parkinson's?

-Why is it important to stay fit and eat right despite the limits Parkinson's disease may put on my body?

-What are some of the breakthroughs in alternative treatments?

-What can I do to better cope with the psychological and emotional issues inherent in living with Parkinson's?

-As a caregiver, how can I best juggle a program of care for a loved one and still find time for myself?

-What insurance options and other forms of financial aid are available and how can one protect one's assets and life savings from long-term illness?

Parkinson's Disease, which features an A to Z Guide to Symptoms and Side Effects and a state-by-state Resource Guide, will help you and your family succeed in your struggle to lead an easier and more fulfilling life.

About this title

About the Author:

Abraham N. Lieberman, M.D., is a board-certified neurologist who is Chief of Movement Disorders at the Barrow Neurological Institute in Phoenix, Arizona, and Chairman of the Medical Advisory Board of the American Parkinson's Disease Association (APDA). He had been Professor of Neurology at New York University Medical Center. He has been the recipient of numerous research grants and awards used to study various aspects of Parkinson's disease.

Excerpt. © Reprinted by permission. All rights reserved.:

Chapter One

Understanding Parkinson's Disease

Alan remembers quite clearly the day he first noticed that his left hand shook. It was a Monday, the day he was to make a sales presentation he'd spent a month preparing. Sitting quietly at his desk, this 54-year-old businessman felt his hand trembling, slightly but persistently. "I put it down to nerves, fatigue, whatever. I'd been feeling depressed and more tired than usual, but otherwise I was in great physical shape. I was only 54. I didn't give it a second thought -- until it kept happening."

For Beth, a 68-year-old retired schoolteacher, the onset of her condition was much more gradual, occurring over the course of more than a year. "I tired easily and moved much more slowly. My gardening chores became more difficult and painful to perform. I thought it was just the price I had to pay for getting on in years," she recalls. "But my husband became alarmed when he saw me dragging my fight leg, and he complained that I wasn't smiling as much and that I seemed to be staring off into space all the time. When I noticed that I was sort of shuffling when I walked, I became alarmed, too."

Both Alan and Beth would later be diagnosed as having Parkinson's disease, a degenerative brain disease suffered by about one million Americans, most over the age of 50, and just slightly more men than women. They would learn that certain cells in a part of the brain known as the substantia nigra were dying -- cells essential to the process of normal human movement. As the cells of the substantia nigra continue to die off, proper movement and balance deteriorate. But neither of them received the diagnosis of Parkinson's on the first visit to a physician.

"My doctor put me through a complete checkup: blood test, chest x-rays, urinalysis, the works," Alan recounts. "He also asked me endless questions about my work routine, what foods I ate, what kind of stress I was under. Because I was feeling so depressed, he referred me to a psychiatrist, whom I saw for about six or seven months. The psychiatrist prescribed antidepressants, but I still wasn't feeling any better. If anything, I felt worse. Then I went to another neurologist, who said, and I quote, 'Well, it doesn't look like Parkinson's disease anyway.' I guess he said this because I didn't have very pronounced symptoms. In fact, my tremor seemed to disappear whenever I went to the doctor! It took about another year and two other neurologists before the diagnosis of PD was confirmed."

Beth's experience was a bit less complicated, but still involved a number of different tests. "Because of my age and because it seemed to be only my right side that felt odd," Beth recalls, "my doctor wanted to rule out the possibility that I'd had a mild stroke without knowing it. He told me up front that a stroke was highly unlikely, mainly because the symptoms seemed to come on gradually and get worse. But he wanted to make sure."

Although Beth's physician suspected PD almost from the start, he knew it was important to nile out the many other conditions -- some common and others quite rare -- that might account for Beth's symptoms (see Appendix II). Many people suffer from symptoms similar to those caused by Parkinson's disease, but do not actually have the disease itself. When a patient suffers from another disease that produces parkinsonian symptoms, he or she is said to have secondary Parkinson's disease. The causes of these diseases range from the rare, including the inherited, to those caused by certain drugs or toxins. Classic Parkinson's disease, in which the cells of the substantia nigra are being destroyed for an as-yet-unknown reason, is usually referred to as primary or "idiopathic" Parkinson's disease.

No simple blood test or x-ray will confirm PD: The diagnosis is arrived at primarily through physician observation, the elimination of other diseases as the cause of the symptoms, and finally the patient's response to drugs known to reduce the effects of Parkinson's disease (discussed in Chapter Four).

Although you may receive the diagnosis of PD directly from your primary-care physician -- many patients do -- both Alan and Beth eventually saw brain specialists as well. Neurologists are trained in the art of deciphering the intricate circuitry of the body's least-understood organ, the brain.

A complete neurological exam is an intense, often time-consuming, but almost never painful, experience. It usually begins with the neurologist taking a thorough medical history. He or she will probably ask what other medical conditions you have and what drugs you may be taking, your history of childhood diseases, and if you have had any accidents that involved head or spinal injury. You also will be asked about your family's medical history, especially that of first-tier relatives such as parents, grandparents, siblings, and children, and second-tier relatives such as aunts, uncles, and cousins. This information may help the neurologist rule out some inherited conditions, such as Wilson's disease, that may resemble Parkinson's disease.

Then the doctor performs the physical exam. When a motor (movement) disorder such as Parkinson's disease is suspected, the neurologist will pay special attention to your muscles: how they contract, their strength, and their tone (their resistance to passive movement). The doctor will most likely use the reflex hammer not only in the usual places, such as your knee and elbows, and ankles, but perhaps on your jaw and in other places as well. Every muscle has a reflex, even those that control chewing and swallowing.

Eye movements are studied because the neurologist can tell many things about the function of your nervous system by studying how your eyes move from side to side and up and down. In Parkinson's disease and in some of the diseases that resemble it, there may be a limitation in eye movement -- a subtle limitation of which you may not be aware.

Next, the neurologist often likes to see how you move about, how you open and close your hands, tap your feet, how you stand, walk down a hallway, sit back down in your chair. Many neurologists, especially when they suspect PD, will request a sample of your handwriting. In addition, the doctor will take special note of what we think of as body language: Do you cross your legs often or casually brush hair from your face? How often do you blink? Do you smile, frown, or otherwise show emotion when you are speaking or listening? Even the way you get dressed after the exam is data for the doctor's calculations.

Your memory, your ability to do simple mathematical equations, and the sophistication of your abstract reasoning may also be measured at this time. One test for mental function requires you to spell a five-letter word such as "world" forward and backward. This test requires not only rote learning but the ability to juggle things in your mind, remember them, and rearrange them.

Don't be surprised if the exam involves a bit of philosophy as well. To measure your powers of abstract thinking, the neurologist may ask you to interpret a proverb or cliche: What does "A rolling stone gathers no moss" mean to you? for instance. Of course, no fight or wrong answer exists to such a question, but how you describe your reaction to it may tell the doctor a great deal about the way your brain is functioning.

More than likely, and again to rule out other conditions that may account for your symptoms, other medical tests may be required. One of the most useful is magnetic resonance imaging, or MRI, which has replaced the computerized axial tomogram, otherwise known as the CAT or, preferably, the CT scan. First introduced in 1984, the MRI scan has become an invaluable medical tool. Hundreds of times more detailed than the ordinary x-ray, MRI scanning can be used to see inside any of the body's organs, including the brain.

The MRI scan is a simple, completely painless procedure, although a few rare patients experience claustrophobia after being placed within the scanner. You'll lie flat on a special table as a powerful magnetic field is created around you. Special radio-frequency waves are pulsed through the field. A detector will pick up changes in the field as the radio waves pass through your brain, then feed the data about tissue density into a computer for analysis. A picture of the result is displayed on a computer screen. The test takes about 20 to 30 minutes and will detect any tumors, cysts, abscesses, or other problems that may be causing your motor dysfunction. Invaluable information on previous, unsuspected strokes may also be obtained.

To rule out brain damage from injury or other neurological disorders not detected on the MRI, the neurologist may request that you have an EEG, an electroencephalogram. If you're scheduled for an EEG, expect to perhaps feel a bit sticky (often glue is used on your scalp) but otherwise completely comfortable. Electrodes are attached to your scalp to record your brain's faint electrical activity. In order to measure how your brain reacts to changes, you may be subjected to flashing lights or noise during the exam.

Other tests may also be administered before your doctor or neurologist determines that you are, indeed, suffering from Parkinson's disease. Although these tests may seem tedious and may be costly, remember that there are other diseases that can be confused with PD. Since PD is a lifelong condition, it is important to rule out these other diseases, which may require special treatment.

One test, called the positron emission tomography, or PET, scan, has provided valuable insights into Parkinson's disease. An extremely sophisticated test, the PET scan can actually detect the presence and location of brain chemicals, something once possible only through the removal of the brain for biochemical analysis. In fact, it may be possible for a PET scan to detect a loss of dopamine -- the brain chemical missing or in short supply in the brain of a Parkinson's disease patient -- before symptoms of Parkinson's disease are apparent. Unfortunately, PET scan equipment is very expensive, costing millions of dollars, and the test is currently available at just a few research centers throughout the world.

Eventually, both Alan and Beth were told by their neurologists that they were indeed suffering from Parkinson's disease. Although their initial symptoms were completely different, each had enough of the cardinal signs of PD that their doctors felt confident that PD was the underlying cause. Alan's shaking hand, depression and exhaustion, and the stiffness in Beth's right side, the dragging of her foot, and her lack of facial expressions were all caused by the same disease.

The Parkinson's Disease Syndrome

As stated earlier, no specific blood test or x-ray will establish Parkinson's disease as a definitive diagnosis. All of Alan's and Beth's tests came back negative: no viruses, tumors, or strokes were causing their symptoms. Apart from ruling out other diseases, what determined the positive diagnosis of PD for Alan and Beth were their own apt descriptions of their symptoms combined with the observations made by their doctors.

Because of this diagnostic process, misdiagnoses can, and often do, occur. Most general practitioners see just two or three new PD patients in an entire year, and even neurologists can be confused by PD's subtle symptoms. Like Alan, you may even find yourself on a psychiatrist's couch for a time before a proper diagnosis is made.

This may be frustrating to both patient and doctor. In the past, it was unimportant as to the length of time it took to diagnose Parkinson's disease because no therapy was available that would affect its progression or severity. Today, although there remains no cure for this progressive brain disease, the advent of a new drug, called selegiline (Eldepryl or deprenyl), may indeed change the course of the disease (see Chapter Four). Now, waiting years, or even months, to begin therapy for Parkinson's disease is no more acceptable than delaying the diagnosis and treatment of a tumor.

One reason this book is being written is to help physicians and patients alike learn as much as possible about PD so that its signs and symptoms are recognized early and treatment started soon. The damage Parkinson's disease does to the brain causes myriad problems related to movement and behavior, some obvious and others more subtle. PD can, in time, result in some patients becoming completely akinetic (totally immobile). In others, few overt manifestations of the disease are present for many years. Most people who suffer from PD come to their physicians with moderate complaints which may progress, slowly or quickly depending on the individual, over a number of years.

It is important to state again -- and it will be repeated several times throughout this book -- that Parkinson's disease affects each patient differently, as do the drugs used to treat it. That said, there are hallmark signs of Parkinson's disease. One or more of these signs are always present in a PD patient.

Cardinal Signs of Parkinson's Disease

Resting Tremor: Tremor, such as the one Alan experienced, occurs in about half to three-quarters of all parkinsonians. It appears most often in the hands and feet, and occasionally may also involve the head, neck, face, lips, tongue, or jaw. The shaking is regular and rhythmic, with a frequency of about 4 to 6 beats per second. In the beginning, the tremor may be worse on one side of the body than the other and the tremor may vary at different times of the day. Physical or emotional stress may also cause tremor to become worse.

"Sometimes I don't even realize my hand is shaking until someone else points it out," says Joe, a patient who has had Parkinson's disease for about 10 years, in describing the uncontrollable tremor that mainly affects his left leg and hand. "A few years ago, I could make it stop if I really concentrated. Now, it's gotten so that I have tremor most of the time, especially in between doses of medication. Sometimes I call myself the 'Shake, rattle, and roll man!' "

Rigidity: Beth's very first symptom was a feeling of stiffness in her right side. "I thought I'd overworked the muscles in my leg, somehow, or slept in the wrong position. But it never went away."

What Beth is experiencing is commonly referred to as rigidity. When your muscles are rigid, they are constantly tensed in a state of sustained contraction -- much more tense than the average muscle -- even when they should be relaxed. This tension usually is perceived by the patient as stiffness or achiness, and it is the physician who labels it rigidity.

The doctor does this by performing a simple test: After first asking a patient to relax his or her muscles, the doctor then flexes the patient's arm or leg. The resistance to the movement felt by the doctor is known as rigidity. If the arm moves smoothly but with stiffness, the condition is termed lead-pipe rigidity, because it resembles the way it would feel to bend a lead pipe. If the arm catches along the path of the flexion, the way a ratchet would in a machine, the doctor might term it cogwheeling rigidity. This cogwheeling effect is thought to be caused by a tremor, deep within the muscles and not always visibly apparent, superimposed over the increased tone of the muscle.

Rigidity in Parkinson's disease involves all voluntary muscles, therefore affecting many different activities and body functions. Restricted movement of the arms and legs, evident when the patient is walking with the arms held at the sides and not swinging, is the most obvious result of rigidity, b...

About this edition

• Publisher: Atria Books
• Publication date: 1993
• ISBN 10: 0671768190
• ISBN 13: 9780671768195
• Binding: Paperback
• Edition number: 1
• Number of pages: 272