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Understanding Parkinson's Disease
A Self-Help Guide
By Steven H. Schechter, David L. Cram
Addicus Books, Inc.Copyright © 2016 Steven H. Schechter, M.D. and David L. Cram, M.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 angry 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 well 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 neurological illness, 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. In 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 finally, 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
Parkinson's Disease: An Overview
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.
The list of potential symptoms listed here can be worrisome. That's why it's important to remember not every person with PD develops every symptom listed. And as noted earlier, PD symptoms vary from person to person. Further, the symptoms progress slowly from the onset and generally do not become worse suddenly.
Trembling can affect the hands, arms, legs, jaw, and head. 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. 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, 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. A person is also at risk for falling.
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 along with 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.
Some individuals may develop a more serious mental disorder known as Parkinson's dementia. As you may know, dementia is a condition caused by abnormalities in the brain that cause difficulty with thinking and memory. It is known that Parkinson's causes changes in the part of the brain that affect body movements; however, further changes in the brain can affect mental function, causing dementia. It is estimated that 50 to 80 percent of individuals with PD will experience dementia as their illness progresses; however, research shows that the average time from a diagnosis of PD to the onset of dementia is approximately ten years.
Psychosis is a major mood disorder in which one experiences hallucinations or delusions. Hallucinations refer to seeing or hearing something that is not real. Delusions are illogical or irrational views that are not based on reality. It's believed that as many as half of all individuals with PD may develop Parkinson's psychosis. The majority — about 80 percent — of individuals have visual hallucinations. About 20 percent will experience auditory (hearing) hallucinations. Parkinson's psychosis rarely occurs in mild forms of PD; it usually occurs in late stages of the disorder.
Risk factors for psychosis include: dementia, depression, sleep disorders, impaired vision, and older age. Long-term use of some PD medications may also cause symptoms of psychosis.
Psychosis in PD patients is under-recognized and under-reported — only about 20 percent of cases are reported to physicians. There are several possible reasons for this. Symptoms may be minor and not very noticeable; or, patients may be frightened by the symptoms and don't wish to tell their doctors. In some cases, individuals may be in denial, not wanting to acknowledge that they have any symptoms. It is important to report such symptoms because after an underlying cause is determined, medications that may help are available.
In the later stages of PD, the throat muscles are less efficient, making it difficult to swallow or chew. Fortunately, medications can usually relieve 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 normal 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 may 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." The following is a description of each of the stages.
Stages of Parkinson's Disease
Signs and symptoms appear on only one side of the body. (Signs are what a doctor sees. Symptoms are what a patient feels.)
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.
Patient is no longer able to live alone.
Excerpted from Understanding Parkinson's Disease by Steven H. Schechter, David L. Cram. Copyright © 2016 Steven H. Schechter, M.D. and David L. Cram, M.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.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
1 A Self-Help Approach to Parkinson's Disease 1
2 Parkinson's Disease: An Overview 4
3 The Emotional Side of Parkinson's Disease 22
4 Your Doctor as Partner 41
5 Drug Treatment for Parkinson's Disease 50
6 Surgery as Treatment for Parkinson's Disease 70
7 The Importance of Exercise 79
8 Day-to-Day Coping 90
9 Caring for Caregivers 116
In Conclusion 131
About the Authors 153