Flowers Psychological Issues

The patient with Parkinson's disease may be affected by psychological changes which can be as important as the physical changes in understanding and living with the disease. In general, the psychological factors which affect the patient may be thought of as both internal and external, and determine how well the patient copes with PD. Some changes which may occur can be directly attributed to alterations in the brain's chemical messengers and selective loss of brain cells. Others can be seen as reflections of external factors and the individuals' reactions to them. How the patient responds to the pressures of his or her world with this chronic neurological condition is an example of these external factors. PD can also have a significant impact on family and friends which, in turn, can affect the patient's outlook. Some patients see PD as a "challenge", while others see it as a "problem". For the Young Onset Parkinson Disease (YOPD) patient in particular, the external issues can create tremendous challenges.

PD usually has an insidious onset with the patient experiencing nothing more than a feeling of being uneasy, out of sorts, unusually fatigued or suffering vague aches and pains. Besides being nebulous and difficult to define, these vague symptoms tend to come and go. Small physical disabilities which may appear are more of a nuisance than recognizable as a symptom. Complaints of not being able to perform fine motor tasks such as buttoning a child's shirt or braiding a child's hair may not seem connected to muscle aches or an occasional loss of balance. These subtle symptoms and minor physical impairments may go unnoticed and certainly unlinked for quite some time. One may attribute the uneasy feeling to some family or work related events. Depression may not be recognized as a symptom of a movement disorder. PD tends to sneak up on its victims, coming on imperceptibly in small degees. The apprehension and distress caused by being "not quite one's self" but not recognizing any obvious physical peculiarity is a common symptom described by Parkinson's patients.

Because of PD's insidious onset and the often slow progression for many months or years, it is not uncommon for one to ignore its symptoms and fail to seek medical care. Many times the patient denies any serious problems. This is understandable because denial is a form of self-protection. However, as the symptoms progress and the patient experiences increased physical limitations, the troubles become psychologically harassing as well as physically frustrating. The sufferer finds himself caught between denial of any problem and fear and worry about what the problem might be. It is at about this point that the opinion of a physician is sought.

The diagnosis of Parkinson's may come simultaneously as a relief and a shock. One feels some relief in finally being able to put a diagnosis with the vague symptoms, and at the same time shock or distress at having a chronic, progressive neurological illness. The future may seem jeopardized by uncertainty. What will one be able to do? Is it possible to continue to work? Can one still function as a nurturing parent and spouse? What kind of medical bills may occur? Will insurance be available? The patient may experience a roller coaster of emotions as both patient and family come to terms with the diagnosis.

Depression

Common reactions to the diagnosis of any chronic illness, including PD, are denial, anger and depression. Symptoms of depression are:

The clinical criteria for depression is to have at least five of these symptoms during the same two week period with at least one of these symptoms being either depressed mood or loss of interest.

Depression affects about 40% of all Parkinson's patients. James Parkinson recognized depression in his description of the disease in 1817. He described the patient as the "unhappy sufferer" and noted the patient's desire for "wished for release" or death. Typically the depression seen in Parkinson's patients is mild, although some report moderate to severe depression. Depression is a normal consequence of facing life with a chronic, debilitating disease. Parkinson's patients are frustrated by muscular rigidity, slow movements (bradyknesia) and shaking (tremor) that interfere with their ability to perform previously simple movements. Embarrassment may result from the tremor. Walking abnormalities and stooped posture may cause the patient to restrict social activity. He or she becomes isolated and thus more frustrated. Depression, which in psychiatric terms is a sense of loss, is certainly an understandable emotion resulting >from external factors in the parkinsonian's life.

While external factors explain to some degree the presence of depression, other internal causes of depression exist. Parkinson's patients have been found to be significantly more depressed than other groups suffering from chronic illnesses. When patients with PD were compared to patients with other chronic diseases, with comparable physical disability, such as arthritis, the parkinsonian patients showed a significantly higher incidence of depression. Approximately 25% of Parkinson's patients become depressed even prior to development of any motor symptoms of the disease. In addition, the severity of depression does not relate to the degree of disability caused by PD or to age or gender. These factors have caused many investigators to look for an underlying chemical component to explain depression in this disease.

Biochemical analysis of the cerebrospinal fluid of Parkinson's patients with depression revealed a reduced level of the chemical messenger called serotonin. The greatest reduction occurred in the spinal fluid of those patients with major depression. The significance of this observation becomes greater when coupled with the belief that serotonin has a major role in the regulation of mood and the finding that serotonin is depleted in the brains of depressed, nonparkinsonian individuals as well as parkinsonians. The so-called serotonin hypothesis of depression has been accepted for many years, however only fairly recently has serotonin been shown to be reduced in many individuals with PD.

Persons with YOPD tend to have a significantly higher frequency of depression than patients who experience later onset. In addition the YOPD patients tend to have a milder course of the disease, some predisposition to a family history of Parkinson's, and a greater frequency of a history of psychiatric disease in the family. In some, depression can be associated with mild intellectual dysfunction. The predominance of tremor, however, appears to be less severe when depression exists.

Depression in PD may also be drug induced. The effect of medications on the mental state may depend on the individual's chemical balance and tolerance for the medication. Rarely patients complain that Sinemet depresses them or gives them a general "blah feeling". On the other hand some patients claim increased mental acuteness. Symmetrel has been reported by some patients to cause mild depression or "jitteriness". Usually drug induced depression follows a pattern of anxiety, restlessness, or worry which begins the first week or two after starting the medication. Mood swings are prevalent and sleep patterns are disturbed. This continues for several weeks, peaking after five to six weeks as the body learns to tolerate the medication. Ultimately the depression begins to fade.

Depression may be difficult to diagnose because the physical signs of PD and depression are quite similar and include slow movement, reduced facial expression, fatigue, insomnia and diminished concentration. Depression may mask the Parkinson's early on, while PD may mask depression when developed later in the course of the disease. Treatment of depression in PD is similar to that of any other depressive illness. The antidepressants recommended for use in PD not only counteract the depression, but also may relieve some of the symptoms of PD. While initiation of levodopa therapy may lighten depression, treatment with one of these antidepressants may be necessary.

Many things can be done to prevent feelings of depression or to diminish such feelings if they occur. One should not forget that activity is a natural antidepressant. When depression sets in, however, even simple tasks may seem difficult or even insurmountable. Parkinson's patients can adopt several strategies to combat depression. It is especially important to identify goals if feelings of helplessness and hopelessness are to be overcome. Begin by setting small goals and gradually increase expectations in a slow, progressive manner. Goals should be realistic and not set so high as to invite failure. Be very specific in setting goals and provide effective means for evaluating if goals have been attained. Include a time frame for completion of each goal. This also provides specific time to review accomplishments and evaluate progress. Examples of realistic goals might be:

Parkinson's patients should remain as active as possible and avoid isolation. Several areas should be addressed when setting goals, including exercise, job activities if appropriate, and structural activities such as crafts, gardening, reading, and volunteer work. Social interaction is important, with opportunities available through church, entertaining, visiting with friends, and support group meetings. Strive to improve communication with family members by discussing your feelings of fear, loneliness, embarrassment, anger, and frustration.

Traditional methods of antidepressant therapy are recommended for treating depression in parkinsonian patients. The combined treatment of levodopa and antidepressants is generally well tolerated. Tricyclics prove to be most helpful as antidepressants. Imipramine (Tofranil) and desipramine (Desyrel) reduce symptoms and have beneficial effects on rigidity and tremor. Amitriptyline (Elavil) helps raise the spirits and has a mild anticholinergic effect that also reduces tremor and rigidity. Nortriptyline (Pamelor) is beneficial for treatment of depression but has little effect on the movement disorder. Amitriptyline because of its mild sedative effect is frequently prescribed at bedtime and may substitute as a sleeping pill.

In addition to drug therapy, depressed Parkinson's patients may benefit from counseling with a psychologist or psychiatrist.

Stress

During periods of great tension, parkinsonian symptoms, especially tremor are magnified. In fact early medical writers speculated that fright, stress or "nervous exhaustion" might be a cause of PD. It is now known that stress does not cause Parkinson's but can accentuate the symptoms. Symptoms may plateau and not seem to progress and then be triggered by some particularly stressful event.

Pushing yourself to perform as you once did can extract a mental and physical toll. Anxiety, self consciousness, and embarrassment create stress which can worsen symptoms. Stressful situations may not always be negative. Positive events such as a social gathering, a marriage, the birth of a child, excitement of a long awaited vacation, or otherwise pleasant social situations, can also be stressors.

Sources of stress can be physical as well as emotional. Fatigue from household chores or even too much exercise can further drain already depleted energy reserves. In such a scenario, a child spilling a glass of milk becomes a crisis, routine tiredness becomes overpowering fatigue and minorproblems can cause one to burst into tears. The normal emotional stresses of living in our fast paced society, replete with deadlines and pressures, can be magnified by a chronic illness. Stress and chronic illness are intertwined. With Parkinson's symptoms becoming more exaggerated with stress, and the exaggerated symptoms causing frustration and perhaps embarrassment creating more stress, a vicious cycle begins. Because even pleasant situations can be stressful, such situations are often avoided by the PD patient. He or she then becomes isolated, a situation leading to depression.

Learn to recognize stressors in your life which are pitfalls for you and decide how to lessen their impact. One key to dealing with stress is to be able to recognize the part it plays in your life and be willing to make the changes necessary to reduce it. Evaluate situations which are stressful and analyze what causes the stress. Plan changes to reduce stress and act on your plan. Set realistic goals, both long and short term, based on your own capabilities. Plan your day so that you are in control of your time and your activities. Deadlines are particularly stressful. Trying to get the children dressed, the dog fed and yourself ready in a short time period creates a situation with predictable stress. One person suggested that appointments should be made for approximate times whenever possible and plenty of extra time allowed for getting ready. Get plenty of sleep. When possible schedule a day of rest after a very busy day. Eat and drink in moderation, monitor caffeine intake and discontinue smoking. Break away >from sources of stress when possible. Change jobs or decide that the beds don't have to be made and the house made spotless every day. Put things in the same place every day in order to avoid last minute panic when you can't find the keys or your wallet. Ask for help, share your thoughts and concerns with your family, and develop a support system.

In spite of the best plans, some stress will inevitably occur. Learn some methods of dealing with it when it does. Deep, slow breathing to the count of four is helpful. Tension is reduced by oxygen being brought into the muscle tissue. Progressive relaxation can also be effective. Sit or preferably lie down and systematically tense and relax every muscle from head to toe. Learn yoga or meditation. Biofeedback, mentally controlling one's own body function with visual or auditory stimulation, can be effective. Keeping a daily journal provides a way to unburden yourself, to take stock of your day, and to keep track of daily functioning. Relaxation tapes and books on a variety of methods to relax are available in bookstores and through libraries.

Anxiety

Parkinson's patients who experience a general uneasiness or tenseness prior to diagnosis may be experiencing mild anxiety as a result of the Parkinson's even though no motor symptoms have yet appeared. As PD progresses it is not unusual for patients to experience feelings ranging from mild anxiety to full blown panic. Generalized anxiety can be described as a global fear, a feeling of uneasiness or tension; an "anxious expectation."

The most disabling form of anxiety attack is referred to as panic attack. Panic attacks occur with increased frequency with PD and may be associated with episodes of severe immobility ("freezing"). Panic attacks may be thought of as instability in the emotional part of the nervous system. The person so affected may feel a paralyzing anxiety, or a "flight or fight" phenomenon. Panic attacks are accompanied by such signs and symptoms as breathlessness, palpitations, nervousness, fatigue, headache, apprehension and trembling. It is believed that the regulator of the portion of the nervous system involved with anxiety is not properly set.

Sometimes the cause of the anxiety can not be specifically pinned down. Other times it is caused by uneasiness about such things as how one's condition will affect the family, one's relationships, employment and ability to function. Frequently patients describe these feelings of fear when they are "off" or during a freezing episode. Immobility, to the extent that one could not move if caught in a fire, is extremely anxiety provoking. Such fears can escalate to the point of panic. Anxiety and restlessness can be exacerbated by use of dopamine agonists or brought on by some tranquilizers such as Thorazine and Stelazine. This is because these tranquilizers interfere with the processing of dopamine in the brain causing the parkinsonian symptoms to worsen.

Anxiety and panic can be treated by medication and psychological counseling. While counseling has an important and beneficial role in the treatment of anxiety and panic attacks, the principal treatment is through medication. The most effective treatment is from a class of medications called benzodiazepines which includes Ativan, Xanax, Valium and Librium. The tricyclic antidepressants and other newer medications have a great benefit in controlling panic attacks.

Drug Related Disorders

Most medications used in the treatment of PD may potentially cause some type of untoward behavioral effects in some patients. A disturbance may range from mild confusion to complex hallucinations. Confusion may manifest itself by disorientation and impairment of judgment and short term memory loss. Hallucinations are almost always visual and usually nonthreatening, but can be complex and frightening. If dementia is present, the patient has trouble distinguishing between what is real and what is not. A toxic delirium with clouding of consciousness, disorientation and memory loss is an extreme side effect of medication and may require hospitalization.

Approximately 50% of patients on long-term levodopa or agonist therapy will experience mild disturbances such as vivid dreams and nonthreatening hallucinations. Hallucinations, confusion, agitation and sleep problems are so common in PD that is difficult to implicate one particular medication. Medications that enhance dopaminergic function in the brain such as levodopa (Sinemet), bromocriptine (Parlodel), pergolide (Permax), amantadine (Symmetrel) and selegiline (Eldepryl), as well as anticholinergic agents such as trihexyphenicyl HCL (Artane) and benztropine mesylate (Cogentin) have been linked to psychiatric symptoms. Dopaminergic toxicity can produce nightmares, night terrors, visual and auditory hallucinations, delusions, paranoia, insomnia and hyper-sexuality. Anticholinergics are known to produce confusion, disorientation, hallucinations and agitation. Some patients experience some short term memory loss when starting to use anticholinergics. It should be noted that the duration and severity of the Parkinson's may be correlated to adverse effects of these drugs. The majority of patients developing these side effects tend to be older and to have been on levodopa or anticholinergic therapy for some time. Hallucinations and confusion can occur in young-onset Parkinson's patients, however, they are usually related to the duration of the disease. Patients with pre-existing psychiatric disturbances or dementia are at greater risk of suffering these side-effects.

The patient should inform the physician at once if he/she is experiencing these symptoms. Generally, reduction or discontinuation of medication results in improvement of these disturbances. As a rule, if a severe toxic delirium is experienced all anti-Parkinsonian medications are discontinued except for a minimal amount of levodopa. The relative benefits of the drug must always be weighed against its side effects.

Confusion/Dementia

Some confusion is not uncommon with advanced PD. It has been observed that nearly half of parkinsonian patients on bromocriptine therapy develop some degree of confusion. The majority of this confusion, however, tends to be seen in older and more advanced patients. Confusion is less likely in younger patients and those in early stages of the disease. Drug induced confusion subsides over several days when the drug is discontinued.

The development of dementia is not considered a normal consequence of PD, but the probability of developing dementia is higher in those with the disease. Estimates of the percentage of Parkinsonians expected to develop dementia vary greatly in the literature. Choosing the largest studies and the ones using the most reliable criteria, the estimate is 20 %. It should be noted however, that about 10 per cent of those classified with dementia in these studies were considered to have a fairly mild dementia. Not very much is known at this time about the progessive or global nature of dementia in PD. In Alzheimer's disease the decline is progressive and global in nature, eventually touching all aspects of cognitive functioning. The dementia of PD is largely limited to memory and some spatial skills. There may also be some psychological rigidity and difficulty in changing >from one task to another. It generally affects older individuals who have a more rapidly progressive course of PD. In addition parkinsonian patients with dementia typically showed onset of motor symptoms at a later age.

Dementia is a clinical-behavioral syndrome that needs to be carefully evaluated to exclude treatable disorders such as depression or side effects of medication. There are estimated to be sixty disorders that can result in dementia syndromes. About 10 to 20 percent of these disorders are treatable and involve metabolic disorders, toxins, endocrine disorders, space occupying lesions (tumors and blood clots on the brain) and psychiatric problems. The prominent clinical signs of dementia include global impairment, reduced memory, impaired judgment, reduced initiation of action, reduced social functioning, reduced control of emotion, and impaired ability to carry out everyday tasks. While memory loss is often a cardinal symptom of dementia, it may be neither a declaration of dementia nor a justification for the diagnosis of dementia. Alzheimer's disease is by far the dominant physical condition leading to dementia with an estimated 50 percent of those with dementia having Alzheimer's disease. Typically the diagnosis of Alzheimer's disease is, in part, one of exclusion. That is, other conditions need to be excluded before the diagnosis of Alzheimer's disease can be used. It is not clear if the parkinsonian patients who develop dementia should be considered to have a separate type of dementia or if it is actually Alzheimer's disease. The physical changes in the brain tissue of those diagnosed with Alzheimer's disease, such as neurofibrillary tangles, have also been found in the brain tissue of some Parkinsonian patients who have dementia. The physical manifestations of Alzheimer's disease, however, are not thought to occur in all individuals with PD, only those of a particular subtype who develop dementia. Currently, there is no way of knowing which course PD will take; none of its clinical symptoms predictably indicate whether dementia will develop.

Coping with Psychological Impact

The months following the shock of the diagnosis of any chronic illness can be filled with psychological turmoil. Denial and disbelief, anger and depression are common reactions. There is frequently a feeling of disbelief, "Why me?" and the notion that the symptoms must be the result of something else. Denial is common as are frustration and a sense of being out of control.

Personal Profile (Thom G.)

"I was in denial because I did not consider myself as having a serious health problem," says Thom, as he scanned through his airline pilots flight log. The entry marked the start of being operationally checked out as a captain on the DC-8 after having completed the very intense ground school and flight simulator training that takes the better part of six weeks. The entry also stated "Thom has Parkinson's." "Yes, the same day that I was starting a new phase of my career I was informed that it was now in jeopardy. Since I only had an occassional slight tremor in the left hand the doctor couldn't be right. I told him that it was surely only a case of nerves... result of ongoing stress. I left the office not thinking of the diagnosis but of the flight...after all, I felt fine. Even though I had this little tremor in my left hand for about the past eighteen months it was no big deal."

Anger is a normal response and you should give yourself permission to be angry because this disease has upset your life. Anger at feeling out of control, frustration, and fear of the unknown are all common emotions in these circumstances. A PD patient may feel guilty about having these feelings as well as guilty about what he/she is doing to other family members by having PD. One may berate oneself for not being the person he/she used to be nor being able to do the things one used to do. You should be aware of your own feelings and cope with them before they get out of control.

Attitude is as important as diet and exercise. It affects symptoms and determines whether you are productive and happy or unproductive and depressed. PD is not something of which to be ashamed. It is not a weakness nor a stigma but a disease for which no one is responsible. Although you do not have control over the physical aspects of this disease, you are responsible for the effects of your mental outlook on yourself and your family. Your mental outlook is largely in your power to control.

Consider the suggestions made for coping with depression and implement those which prove to be helpful. Avoid self criticism such as, "I'm too slow" or "I can't do anything I used to do." Focus instead on positive accomplishments such as, "I know my job well", "I can manage my household" , and "I have a good relationship with my children." Be as active as possible. If you cannot do a task because of fatigue or being "off", switch to something you can do. If you cannot change your mental outlook through your own efforts, try talking to family and friends or reading helpful books about living with a chronic illness. Should these be unsuccessful, psychological counseling may be needed. Severely disturbed behavior need not be present for counseling to be warranted or helpful. Mental health professionals are trained to help patients and caregivers openly discuss their fears and feelings that may otherwise be difficult to share.

In dealing with all aspects of family relationships and friendships, it is important to remember that a sense of humor can help in the most difficult situations. Being able to laugh at the Parkinson's disease and at oneself relieves stress and communicates to others an acceptance of the disease. It bridges awkward situations and provides an opportunity for others to discuss the Parkinson's disease and ask questions. "Laughter is the best medicine" is a common expression with some basis. A sense of humor is a very effective coping mechanism.

Professional Help

The pressure of living with PD or living with someone who has PD can become so intense that one's own coping skillsbecome stretched to their limits. When coping skills begin to fail, some professional help is needed. This intervention might be needed at any of the stages of dealing with the disease and a complete breakdown of one's support and coping systems is not a necessary condition before professional help is warranted or helpful. Mental health professionals seem to have the undeserved reputation for being the ones to whom "crazy" people go for help. Actually the vast majority of work performed by psychiatrists and psychologists focuses on ordinary individuals who find themselves confronting special problems in their lives. Each person has his or her individual threshold beyond which some help is needed. The threshold at which a person needs outside help varies with the individual, but everyone has some point at which he should seek assistance.

Psychiatrists are physicians who have graduated from medical school with a M.D. degree and have completed special training in psychiatry in a residency program. Psychiatrists generally are called upon to treat serious clinical depression and other mental illnesses. A neurologist or a psychiatrist may be consulted for treatment of dementia. Psychiatrists provide counseling and are licensed to prescribe medication. Usually a referral from your neurologist or family physician is required for psychiatric treatment.

Psychologists have completed a doctoral program (Ph.D., Psy.D. or Ed.D.) which typically takes three to four years of course work and practical experience and one year of clinical internship. Before being licensed to practice independently, the psychologist must hold a doctoral degee, have one or more years of postdoctoral experience under the supervision of a licensed psychologist, and pass state-administered examinations. Psychologists administer and interpret psychological tests to gather information about a patient's mental state, cognitive functioning or emotional state. Psychologists also provide therapy in which problem solving sessions seek solutions to obvious problems, such as how to tell family members, or sessions which focus on internal experiences such as feelings of poor self-esteem and guilt.

Marital therapy and family therapy are in the purview of the psychologist. They might be called upon to deal with the turmoil in which spouses or entire families find themselves when confronted with the diagnosis of PD. Sometimes the best arena in which to tackle problems is in the presence of the spouse or the entire family. Psychologists frequently help patients work through marital problems where, for example, the husband and wife are having trouble communicating feelings and fears such as those brought on by the diagnosis of PD. They also provide family counseling in a situation such as a child becoming rebellious or withdrawn after learning of a parent's illness. A therapist may be able to intervene in such a way that a clearer understanding of the issues is possible. Because the entire family is effected by PD, the psychologist may be able to help explore fears and concerns regarding changing roles, increased dependencies, fears of losing a family member as well as the anger and guilt brought on by the diagnosis.

Social workers in the past several years, have begun to counsel in some areas. They are trained in crisis intervention and in helping the client deal with short term problems such as family disputes, dealing with grief, and coping with a medical diagnosis, as well as how to obtain practical help with a clients' medical and social needs. Clergy of all persuasions are available to those who feel more comfortable with counseling in that forum.

Frequently professional help from one of these highly trained professionals will enable the Parkinson's patient to get back on track, will help a couple cope with the overpowering burden of dealing with this chronic disease in the framework of the marriage, and will help in handling the attendant family problems which come with raising children and coping with PD at the same time. This is an important option to considering the arsenal of mechanisms available to the young-onset Parkinson patient.

Closing Thoughts

No one would willingly choose to have PD or any other chronic medical disorder. Nevertheless, if PD affects you or your family member it is vital to recall that it is a disorder with which you can live and even thrive. PD does not shorten life, but does call for accomodations to be made for physical activities. It is very slowly progressive and in some appears not to progress at all. As Ava Crowder, APDA National Ambassador, says, "I can get better or I can get bitter..... The word bitter is not in my vocabulary." For many, the Parkinson's experience means a degree of struggle, some emotional turbulence, but eventually an expanded understanding and appreciation for one's own ability to adapt and to cope.

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