Denial, a feeling of shock and disbelief (Not me!) is a common reaction, especially at the time of initial diagnosis and early in the disease process. Since PD can have a subtle onset before an actual diagnosis is made, people often attribute symptoms to other causes. People also sometimes report a general feeling of uneasiness or an anxious, depressed feeling prior to diagnosis. When a diagnosis is finally made, it can come partially as a relief, but there is often shock and fear of the future.
Depression is one of the most common reactions to Parkinson’s disease, occurring in roughly 50 percent of clients. Some doctors feel that depression may actually be part of the disease process. PD medications can also cause depression in some patients.
A depressed mood is also a common and normal response in many who are dealing with the losses and lifestyle changes that come with living with a chronic disease. Losses and changes often occur in the areas of social activities, work, relationships, physical mobility and general independence. Depression often leads to anger, in both the patient and the family.
Depression is treatable and can improve. It is important for you and your loved one to recognize the symptoms of depression and inform their doctor for appropriate treatment. The symptoms of depression include:
- Sad mood
- Diminished interest or pleasure in activities
- Loss of appetite or overeating
- Sleeping too much or too little
- Fatigue or loss of energy
- Feelings of worthlessness or hopelessness
- Difficulty concentrating
- Restlessness, feeling keyed up or being slowed down to the point that it is noticed by other people
- Recurrent thoughts of death or suicide
The diagnosis of depression can sometimes be difficult because the physical signs of Parkinson’s disease and depression, such as fatigue, slowness of movement and changes in eating and sleeping, are similar. Depression is often under-diagnosed because people do not often talk about it. Depression can be successfully treated through medication and counseling.
Anxiety can range from a general feeling of tenseness or uneasiness to a full-blown panic attack. Sometimes these feelings are experienced prior to the diagnosis of PD. Anxiety can be the result of worrying about how PD will affect a person’s lifestyle and future or concern about how quickly the disease will progress and what kinds of limitations to expect. Anxiety can be treated by medications and counseling.
When diagnosed with PD, many experience anger (Why me?) Why did this condition happen to me? Frustration often also sets in – frustration over the fact that the body doesn’t work as well as it used to. As the disease progresses and physical mobility issues increase, the feelings of frustration become more pronounced. Frustration and anger are also very evident in the caregiver, who often is the recipient of the feelings vented by their PD loved one and feels helpless in the situation. Frustration and anger can be controlled through counseling and participation in a support group.
Stress and chronic illness are interconnected. Stress comes from a variety of different sources that can be physical as well as emotional. Stress can come from daily life tasks, events, problems, fatigue, anxiety and frustration with having to deal with the limitations and life adjustments that PD often creates. Stress can worsen Parkinson symptoms, especially tremor. It is therefore important to focus on stress management and relaxation in your daily life.
Apathy is a decrease in motivation or interest in events, reduced spontaneous interactions with others, decreased concern or indifference with family and friends and a loss of interest in hobbies or enjoyable things. There is a feeling of “I don’t care” and no emotional response among those who feel apathy. Among those who are diagnosed with PD, approximately 40-45 percent will suffer from apathy. Apathy may be connected to the thinking and mood changes that occur in PD. Medications are commonly used to treat apathy, but it is also important to develop a structured set of activities to keep the PD client physically, mentally and socially active.
LOSS OF IMPULSE CONTROL
Loss of impulse control, or disinhibition has been reported in some people living with PD as a side effect of some medications and as a side effect of deep brain stimulation (DBS). The behaviors most commonly reported involve gambling and sexual preoccupation. Usually, such behaviors were not present prior to starting the medication or prior to the DBS procedure. Changes in medication often improve this condition – for those who have had DBS, this side effect can simply improve with time.
Those with PD sometimes report an increase in emotions. One of the more common examples is becoming more tearful when watching a movie. Although not always a problem, it is a clear change from how the person used to be. These episodes often come out of the blue and pass quickly. It is thought that increased emotions may be related to damage to the nerve pathways that connect the frontal lobes with the area that controls facial expression. Medications can be prescribed to treat this condition.
Hallucinations are best described as deceptions or tricks played by the brain that involve the body’s senses. There are five types of hallucinations:
- Visual – Seeing a furry creature run by your feet, or seeing a deceased loved one sitting or standing in the room
- Auditory – Hearing a voice that is coming from inside your head and not from another person or object
- Olfactory – Smelling an unpleasant odor that is not related to another source
- Tactile – Feeling imaginary bugs crawling on your skin
- Gustatory – Tasting a bitter or abnormal taste in your mouth that is not related to another source
Visual hallucinations are the most common, followed by auditory, olfactory, tactile and gustatory.
Delusions are defined as fixed thoughts or ideas that are often illogical, irrational or dysfunctional. The person truly believes these thoughts, even though they are not based on reality. The most common types of delusions reported in PD are:
- Jealousy – the belief that your partner is being unfaithful
- Persecutory – the belief that you are being attacked, harassed, cheated and/or conspired against
- Somatic – the belief that your body functions in an abnormal manner or an unusual obsession with your body or health
Delusions are less common in PD compared with visual hallucinations, affecting about 8 percent of patients. Delusions generally represent a more obvious decline or deterioration in the person’s condition. Delusions of jealousy and persecution are most widely reported.
Dementia is a permanent decline in memory and thinking skills which causes problems in everyday functioning. Not everyone who has Parkinson’s disease will develop dementia, but there are a number of risk factors that can increase the likelihood that a loved one will develop dementia:
- Increasing age
- Older age at PD onset
- Longer disease duration
- Family history of dementia
- Greater severity of motor symptoms
- Hypertension (high blood pressure)
- Poor medication tolerance
Those with dementia also are unable to solve simple problems and are not able to follow simple, everyday tasks. Those with dementia can experience a variety of emotions, such as depression, anger, frustration, anxiety and confusion. As dementia symptoms increase, there is a greater need for assistance from family or from outside home health agencies, and there might be a need eventually for a move to an assisted living or skilled nursing facility.
There are a variety of coping techniques to help your loved one in dealing with the daily challenges brought on with the diagnosis. These coping techniques include the following:
MAINTAINING A POSITIVE/HOPEFUL ATTITUDE
Attitude is something that anyone can control. It is important for patients to focus on the aspects of life that are positive; take stock of things to be grateful for each day.
PARTICIPATING IN ONGOING EDUCATION
Knowledge is power. Learn as much as you can about Parkinson’s disease and its treatment. The more that is understand, the more you can collaborate with doctors on treatment and become active participants in their medical care. You and your loved one are your own best advocates for their care, and families can also be instrumental advocates for their loved ones.
Doing something pleasurable will help your loved one cope better with the daily challenges of the disease. Watching a movie, listening to peaceful music, reading a good book, gardening are some activities that help.
INSTITUTING A REGULAR EXERCISE REGIME
Exercise has been found to be very helpful in minimizing the symptoms of Parkinson’s disease, increasing mobility and improving quality of life. It can also be very emotionally beneficial, improving depressed and anxious moods in many patients. Yoga and tai chi are very relaxing exercises, which improve flexibility and balance.
MAINTAINING SOCIALIZATION – DO NOT BECOME ISOLATED
Isolation can only make depression worse. It is important to maintain some social contacts, be involved in activities that bring you pleasure and keep lines of communication open with family and friends.
FINDING AND MAINTAINING A SENSE OF HUMOR
There is definitely some truth to the adage “Laughter is the best medicine.” Being able to laugh a little about the situation helps clients keep things in perspective and relieves some of the stress. It can also help in awkward situations because it tends to put others at ease, and this can promote communication.
PARTICIPATING REGULARLY IN SUPPORT GROUPS
Connecting with other people who also are dealing with Parkinson’s disease can be very helpful in coping with the disease. Support groups offer a safe place to talk about feelings, questions and concerns. All members of the family can gather valuable information through their active participation in a support group.
SEEKING COUNSELING SERVICES, IF NEEDED
Individual and family counseling can be very helpful in dealing with the emotional issues related to chronic illness. Speaking to someone who is objective can help people examine their feelings. Social workers, psychiatrists and psychologists are professionals that are trained to assist clients and families through counseling services.
TAKING CARE OF YOURSELF
Treatment for Parkinson’s disease does not only involve medication, but also includes diet, exercise, support of family and friends and a healthy attitude.
MAINTAINING AN ONGOING STRESS MANAGEMENT PROGRAM
Stress can have a very negative impact on the symptoms of Parkinson’s disease, so it is important to focus on managing the stresses in daily life and finding ways to relax. Stress management techniques include: deep breathing exercises, progressive relaxation, relaxation books/tapes or CDs, meditation and massage. Different techniques work for different people, so it important for clients to find the stress management technique that works for them.
People living with Parkinson’s disease can find a good balance in keeping their emotions in check by seeking out the support of their families and others in the community, by keeping active, by keeping a low stress level in their daily lives, by maintaining a good diet and exercise regime, by keeping a positive attitude and taking care of themselves. It is important for everyone affected by the disease to remember to ask for help when needed – it is available. Everyone needs support; all you have to do is ask!!