Understanding Parkinson's Disease: A Self-Help Guideby David L. Cram, Xiao Gao, Steven Schechter
If so, you are probably worried and have many questions. You're wondering what course the disease will take. How will it affect your life? What are your treatment options?
The authors are uniquely qualified to understand your concerns. David L. Cram, M.D., is a physician who has lived with Parkinson's disease (PD) for twenty years. His coauthors Xiao-Ke Gao, M.D.
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If so, you are probably worried and have many questions. You're wondering what course the disease will take. How will it affect your life? What are your treatment options?
The authors are uniquely qualified to understand your concerns. David L. Cram, M.D., is a physician who has lived with Parkinson's disease (PD) for twenty years. His coauthors Xiao-Ke Gao, M.D., and Steven Schechter, M.D., are neurologists who have treated hundreds of PD patients. They also understand how important education and effective treatment are in coping with PD and maintaining the best quality of life possible. In Understanding Parkinson's Disease, they draw from their varied perspectives to enlighten and encourage readers. Among the topics they cover:
How PD is diagnosed
Symptoms and stages of PD
The emotional side of PD-conquering fear and denial
Choosing the right health care team
Surgical options-deep brain stimulation
The importance of exercise
Coping with day-to-day problems that may arise
Caring for caregivers
"A simple, sympathetic guide to coping with a progressive, disabling brain disorder. Kind, practical, and thorough, a valuable starting point." —Kirkus Reviews
"[Dr. Cram] empathetically describes the aspects of PD . . . Quotes from Parkinson’s patients enhance the informative, authoritative text." —Library Journal
"A work doubly valuable, for it presents both a clinician’s and a patient’s attitudes and knowledge." —Booklist
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Understanding Parkinson's Disease
A Self-Help Guide
By David L. Cram, Steven H. Schechter, Xiao-Ke Gao, Jack Kusler
Addicus Books, Inc.Copyright © 2009 David L. Cram, M.D., Steven H. Schechter, M.D., and Xiao-Ke Gao, M.D., Ph.D.
All rights reserved.
A Self-Help Approach to Parkinson's Disease
If you or someone you love has been diagnosed with Parkinson's disease (PD), it is easy to feel overwhelmed or believe there is nothing you can do. After all, PD is a chronic, progressive disease for which there is presently no cure. But, there is plenty you can do to improve your life or that of someone you love.
Self-help strategies can help improve the quality of life for those with PD. Self-help strategies can't cure the disease, but they can slow its progress and reduce the severity of symptoms. In addition, many new drugs can slow the progression and eliminate many aggravating symptoms. The self-help techniques offered here can help you maintain your independence for as long as possible. Perhaps most important, they can foster a sense of well-being and serenity in your life.
What Is Self-Help?
Self-help is a positive approach to your condition that says, "I have power. I have responsibility. I can make a difference in my disease." There are four important elements of self-help:
3. Partnership with your doctors
4. Taking action
Studies have repeatedly demonstrated that attitude can significantly affect a person's health. For example, research has found that people who are chronically hostile are more likely to suffer heart attacks. Our minds and bodies are connected. Although eating right, exercising, reducing stress, and getting enough rest are all important, your attitude is perhaps the most essential element of self-help.
We do not yet know how attitude affects the physical aspects of PD. For instance, we do not know whether an upbeat attitude only lessens symptoms or actually slows the progression of the disease. However, we do know that a positive attitude can improve the quality of your life. It can make you feel better. It can also enable you to take the self-help steps you need to keep feeling as good as you can for as long as you can.
Another essential tool of self-help is knowledge. It is important that you and your loved ones learn all you can about PD — what it is, what causes it, its symptoms, and treatment options. Stay abreast of the latest developments in research and treatment. Equipping yourselves with knowledge will reduce your fears and enable you to make the best-informed medical choices.
Partnership with Your Doctors
Self-help does not mean doing everything by and for yourself. Because you have a serious, progressive disease, your doctors must play a major role in your care.
The old model of health care presumed that the doctor had all the power and made all the decisions concerning your medical treatment. By contrast, the self-help model acknowledges that you are an active partner with your doctors in your health care. Self -help comes with responsibilities. For instance, your doctors must select the right medicine in the correct dosage for your symptoms. Your job is to take the right amount of medication on time, keep track of your symptoms and side effects, let the doctors know how the medication is working, and report any problems you may be having with the treatment regimen.
Taking action means doing the things that make you feel better, slow the disability, and keep you independent for as long as possible. You can use specific self-help strategies to improve your diet, take your medications on time in the right amounts, reduce stress in your life, and get adequate rest. We will discuss each of these strategies further in the coming chapters.
By adopting a positive and upbeat attitude, equipping yourself with knowledge, partnering with your doctors, and taking action, you will give yourself the best possible chance at living better with PD.CHAPTER 2
What Is Parkinson's Disease?
Parkinson's disease is a progressive brain disorder. Doctors often call it a disorder of the motor system, which is the nerve system that controls body movement. Parkinson's disease (PD) occurs when brain cells, or neurons, decline and cause a deficiency of the brain chemical dopamine. This chemical (one of the brain's neurotransmitters) affects the part of the brain associated with muscle control, attention, learning, and the brain's pleasure and reward system. Low dopamine levels bring about the symptoms of PD.
Symptoms vary from person to person. For example, a certain symptom may develop early in one patient but develop much later (or never) in another patient. Symptoms may come on quickly or very gradually. In fact, sometimes the symptoms can be subtle and a person won't notice them for months or longer. Symptoms may affect one or both sides of the body. Often, a symptom will start on one side of the body and become more pronounced on that side.
Trembling can affect the hands, arms, legs, jaw, and face. The classic PD tremor is a rhythmic back-and-forth movement of the thumb and forefinger, sometimes described as "pill rolling" because the tremor resembles the action of rolling a pill between the forefinger and thumb. The tremor usually begins in the hand but may also begin in the foot or jaw. About 75 percent of people with PD develop tremor; in the early stages of the disease, the tremor affects only one side of the body. The remaining 25 percent of PD patients never develop significant tremor.
Stiffness or Rigidity
For the body to move smoothly, opposing sets of muscles must alternately relax and contract. In a person with PD, muscles of the limbs and trunk may remain constantly tense and contracted. This may cause aching, stiffness, weakness, and jerky movements.
Slowness of Movement
Called bradykinesia, slowness of movement is an unpredictable and frustrating symptom of PD. One moment, you move easily. The next, you need help. Simple tasks, such as dressing, that were once performed easily may become difficult and time consuming.
Impaired Balance and Coordination
This symptom may prevent someone with PD from performing certain motor functions, making the individual fall easily or have a stooped posture. These symptoms tend to worsen over time. Eventually, the person with PD may experience difficulty walking, talking, or completing otherwise simple tasks.
Other Possible Symptoms
Depression and Emotional Changes
It is common, especially early in the disease, for people with PD to develop depression. Drugs used to treat PD symptoms sometimes worsen depression. However, some antidepressant drugs may safely and effectively be taken alongside these drugs.
Insecurity and fear are often secondary symptoms of PD. Some people with PD may feel that they can't cope with new situations and will therefore refuse to travel or socialize.
It's believed that nearly half of all PD patients experience some form of pain related to their PD. However, the discussion of pain as a symptom is often overlooked; patients often think the pain is caused by other factors. The pain commonly associated with PD is muscle pain, which can be caused by poor posture, rigidity, and lack of physical activity; backache is an example of pain that may occur as a result of these factors.
Pain may also be caused by dystonia, which is a neurological muscle disorder that causes uncontrollable muscle spasms resulting in abnormal movements and postures. A potentially painful condition, it can affect arms, legs, trunk, neck, face, tongue, jaw, or vocal cords. PD medications and physical activity help relieve dystonia.
Memory Loss/Slow Thinking
Although reasoning remains clear, it may be harder for someone with PD to remember or come up with solutions to problems as quickly as in the past.
In the later stages of PD, the throat muscles are less efficient, making it difficult to swallow or chew. Fortunately, medications can usually solve these difficulties.
Freezing is a temporary inability to move that is common in people with advanced stages of PD. It is as if someone hit an "off" switch and movement stops. A person may have trouble getting up from a chair or it may seem as if a foot has become stuck to the floor. Freezing usually lasts only a few seconds or minutes, but because it is unpredictable, it can contribute to falls.
Changes in Speech
People with PD may experience changes in speech: rapid speech, slurred or repeated words, hesitation in speaking, or speaking too softly or in a monotone. Speech therapy can often help a person with PD cope with these problems.
Impaired Sense of Smell
A reduced sense of smell is common among PD patients. In fact, doctors believe that an impaired sense of smell may be an early indicator of PD, and research is under way to use the loss of the sense of smell as a diagnostic tool for early detection of PD. Some PD patients recall losing part of their sense of smell months or years before other major PD symptoms developed.
Some individuals with PD may have difficulty controlling their bowels and bladder and suffer constipation. As mentioned earlier, malfunctioning neurons in the brain affect smooth muscle movement throughout the body, and this may also affect the function of the digestive system. Also, it's possible that some medications you take may cause constipation. Making changes in diet and exercise and drinking plenty of fluids can often alleviate constipation.
Those with PD may experience restless sleep, nightmares, and problems staying asleep at night. As a result, they may feel drowsy during the day. Difficulty sleeping may be a symptom of PD or a side effect of the drugs used to treat symptoms of the disease.
Changes in Facial Expression
PD can cause one to have diminished facial expressions. A person may smile or frown less and facial expressions may become somewhat "masklike." A person with PD may also blink less and appear to stare. These changes are a result of the complex changes that occur in the body as the result of reduced dopamine levels.
It is common for people with PD to develop either oily or dry skin, sweat excessively, and be unusually sensitive to feelings of heat or cold. Medication and standard skin treatments can usually alleviate these problems.
Changes in Handwriting
It is not uncommon for patients with PD to notice changes in their handwriting; it often becomes small and crowded. The change in handwriting is a result of not enough dopamine getting to the brain; the resulting disruption in muscle movement affects handwriting.
Stages of PD: How the Disease Progresses
PD affects people differently. In some, the disease progresses quickly. Some patients with PD, however, experience a slower progression. Some people with PD become quite disabled from the symptoms; some individuals with PD experience only minor symptoms.
For most PD patients, there is a subtle "presymptomatic" phase, which may begin four to six years before more obvious symptoms. A person may feel tired or generally unwell. He or she may feel a bit shaky or have trouble getting out of a chair. Other subtle, early symptoms may include:
Slight weakness in an extremity
Stiffness in one leg when walking
Changes in posture
Decreased sense of smell
Changes in handwriting
Changes in speech
Muscle and joint pains
Often the disease begins with a small tremor that comes and goes in one finger. Over time, however, the tremor may become more frequent and spread to the entire arm. Stiffness or rigidity in the arm can follow. Simple tasks such as buttoning clothes may become difficult. With time, the leg on the affected side becomes stiff, harder to move.
In many cases these changes are so subtle or gradual a person doesn't really notice them. Often, family or friends are the first to notice a change in their loved one.
As the years pass, the symptoms progress. The tremor and the rigidity may spread to both sides of the body. Movement may become slower. One's facial expression becomes less animated.
Especially in older people, it is easy to see how stiff limbs, slow movement, and a shuffling gait may be confused with normal, age -related changes. Many people with PD and their loved ones dismiss the early symptoms as "old age." Sometimes the fatigue and lack of facial expression lead to an incorrect diagnosis of depression. Because the symptoms often progress slowly over many years, it may take quite some time before they interfere enough to prompt one to seek a medical diagnosis.
Doctors classify PD symptoms by stages. For example, your doctor may say, "You have stage 1 Parkinson's disease." Here's a description of the stages.
Signs and symptoms appear on only one side of the body.
Symptoms are mild.
Symptoms may be inconvenient, but they are not disabling.
Usually a tremor is present in only one limb.
Friends and other loved ones notice changes in posture, movement, and facial expression.
Symptoms appear on both sides of the body.
Symptoms cause minimal disability.
Posture and gait are affected.
Body movements are slowed significantly.
Symptoms cause moderate to severe problems with normal functioning.
Symptoms are severe.
The individual can still walk, but only to a limited extent.
The patient experiences rigidity and slowness of movement.
One is no longer able to live alone.
Neurologists include a fifth stage in which the debilitation requires a patient to be confined to a bed or wheel-chair. For many patients, early self-help and drug therapy may delay this stage to very late in the disease or even prevent it altogether.
Who Gets PD?
You may be asking, "Why did I get PD?" No one really knows. But you're not alone. Parkinson's disease strikes about two out of a thousand people in the general population and about five per thousand among those fifty and older. It is uncommon, though not unheard of, in children and young adults. PD is equally common among men and women and occurs in all ethnic groups.
About 60,000 new cases are diagnosed annually in the United States alone. At least a million Americans have been diagnosed with Parkinson's disease, and research suggests that there might be twice as many undiagnosed cases. The incidence of PD is expected to double by the year 2030. More people suffer from PD than from multiple sclerosis, muscular dystrophy, and amyotrophic lateral sclerosis (Lou Gehrig's disease) combined.
What Causes PD?
The precise cause of Parkinson's disease is not known. However, researchers have uncovered clues about the causes. It is clear that a lack of the chemical dopamine in the brain is a major factor. There are other theories about possible causes.
Damage to Nerve Cells
Parkinson's disease is caused by the progressive deterioration of the brain's nerve cells, which produce the chemical dopamine. As mentioned earlier, when production of this chemical is impaired, normal nerve function is disrupted, which in turn affects the coordination of movement. Medical scientists are not sure why degeneration of these nerve cells occurs.
Other causes of PD are certainly possible. Some researchers suggest that free radicals (also called oxidants) may damage or kill nerve cells and lead to PD. Free radicals are highly unstable molecules produced during the body's normal metabolism. These free radicals cause cell damage only when there are more than the body can handle.
Antioxidants such as vitamins A, C, and E neutralize free radicals. The damage occurs when your intake of antioxidants (from food or supplements) is too low or when your body produces excessive amounts of free radicals due to inflammation, drug or alcohol abuse, smoking, sun damage, or dozens of other factors. Cancer, heart disease, and Parkinson's disease are only a few of the disorders in which free radicals play a role.
Excerpted from Understanding Parkinson's Disease by David L. Cram, Steven H. Schechter, Xiao-Ke Gao, Jack Kusler. Copyright © 2009 David L. Cram, M.D., Steven H. Schechter, M.D., and Xiao-Ke Gao, M.D., Ph.D.. Excerpted by permission of Addicus Books, Inc..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Meet the Author
David L. Cram, MD, is the clinical professor emeritus for the University of CaliforniaSan Francisco. He is the author of Answers to Frequently Asked Questions in Parkinson’s Disease and The Healing Touch. He lives in Walnut Creek, California. Xiao Gao, MD, works in private practice and is an assistant professor of clinical neurology at New York University Medical Center. She lives in Riverside, Connecticut. Steven Schechter, MD, is a clinical assistant professor of neurology at Wayne State University School of Medicine. He is a member of the American Academy of Neurology and is actively involved in medical student education. He lives in West Bloomfield, Michigan.
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