Each year in the United States, 60,000 new cases of Parkinson’s disease (PD) are diagnosed, adding to the 1.5 million Americans who currently have this disease. PD is a progressive, neurodegenerative disease that has no age, race, sex, or socioeconomic boundaries, and is without a known cause. The main characteristic of PD is a lack of dopamine in the brain, forcing one to experience challenges with motor and non-motor skills. Typically, PD affects those above the age of 65; however, 15 percent of those diagnosed are under the age of 50.
Diagnosing Parkinson’s Disease
Diagnosing PD can be challenging because the signs and symptoms vary with each individual. The rate of misdiagnosis can be relatively high, so it is important for a neurologist to be part of the treatment team. There are four major motor signs that serve as the hallmark of PD:
Resting tremors (shaking with the limb at rest)
- Bradykinesia (slowness of movement)
- Rigidity or muscle stiffness
- Postural instability or imbalance
While there are no definite diagnostic measures for PD, the presence of two of the major motor signs and a positive response to the drug “levedopa” typically confirms its diagnosis. Because of the disease’s unknown cause and uncertain course, it is important to be educated about the possible wide variety of motor and non-motor signs and symptoms that a patient with PD may experience.
Inability to sit still
Slowness in movement execution
Decreased arm swing when walking
- Difficulty arising from a chair
- Difficulty turning in bed
- Difficulty or abnormality in performing voluntary muscular movements
- Sustained muscle contractions resulting in repetitive, involuntary, twisting, or writhing movements and unusual postures or positioning
- Lack of facial expression
- Small handwriting
- Postural instability
- Resting tremor
- Rigidity and freezing in place
- Stooped, shuffling gait
- Cognitive Impairment (mild memory difficulties to dementia)
- Digestion issues and constipation
- Diminished sense of smell
- Increased sweating
- Low blood pressure when standing
Male erectile dysfunction
- Painful foot cramps and other unexplained pains
- Sleep disturbance
- Speech (low voice volume and muffled speech) and swallowing problems
- Urinary frequency/urgency
Medication treatments available to PD patients are levadopa and dopamine agonists. The American Parkinson Disease Association notes that levadopa is more commonly used in elderly patients because of the lower risk for psychiatric symptoms. In contrast, dopamine agonists are used more often in younger patients because of the patient’s ability to be more tolerant of the side effects and for whom delaying motor complications is an important goal.
Surgical interventions, like deep brain stimulation and lesioning (such as pallidotomy or thalamotomy), are available in the later stages of the disease and may grant temporary relief, but they are not a cure. Deep brain stimulation is the preferred intervention in which a pace maker-like device is inserted inside the surface of the chest and is connected to electrodes that lead to the brain. It has been shown to be more effective than the best medical therapy; however, there are risks involved that should be discussed with a neurologist.
How can the disease affect the patient and their families?
In combination with the motor and non-motor symptoms that affect daily living activities, patients with PD and their families must learn to adjust and reorient their lives in accordance to the progression of the disease. New roles and responsibilities are delegated between family members and all caregivers involved. Subtle changes in functioning can result in big changes in living. For example, couples may find that as the disease progresses, conversations that once occurred at opposite ends of the house become increasingly challenging as the patient’s ability to project vocally decreases. Leisure activities that the couple once enjoyed together may be replaced with others that are more appropriate to the couples’ combined strengths. Children who once relied on their parent to take care of them may find themselves in the reverse role.
As PD progresses, both the patient and their caregivers/family members are at increased risk for experiencing depression and anxiety. In fact, 40 to 50 percent of patients experience mild to severe depression, while 40 percent may experience anxiety. For PD patients, depression can be difficult to diagnose because many of the characteristics mimic the PD symptoms or medication side effects. Special attention and careful tracking of symptoms is important for caregivers to report to their healthcare team. Some of the common symptoms/characteristics of depression to look for in PD patients are:
- Psychomotor slowing
- Inability to concentrate
- Diminished appetite
- Diminished sexual desire
- Sleeping difficulties
- Social isolation
- Blaming oneself
- Severe symptoms
- Avoidance or denial of disease
- Unstable relationships
Anxiety, a secondary symptom to PD, can often be overlooked by health providers because it is seen as a normal response to the progression of the disease. The most common form is social anxiety and panic. PD patients can sometimes be afraid of being negatively viewed in public and lose self-confidence. Because of the motor symptoms that impact balance and movement, many have had the experience of being mistaken for someone who is intoxicated. Panic may also occur when one feels frozen in place or worries about suddenly being unable to move. Both depression and anxiety not only complicate and elevate the stress of the symptoms, but they also place increased pressure on the family to help manage the disease.
With PD the support of family and friends is not optional, which is why it is so important for caregivers to seek out support for themselves. Taking turns with friends and family members for some daily responsibilities can be helpful for caregivers to decrease their risk for depression and/or anxiety. It is essential that caregivers get a chance to have time to themselves, even if it is only for an hour. Increasing both the patient’s and caregivers’ support network, as well as having personal time, are crucial to the health of all parties.
How can a Marriage and Family Therapist help?
Because PD affects all aspects of family life, a Marriage and Family Therapist (MFT) can be especially helpful to have as a part of one’s treatment team. This is due to their ability to see how PD influences the whole family system and the relationships within. An MFT’s primary goal is to allow the lines of communication to flow giving voice to each person’s concerns and feelings. For couples, it can be important to talk about the roles and pre-existing boundaries that once served as a structure to their relationship. Sexual intimacy for PD patients can also become difficult, painful, and hard to talk about. An MFT can engage the couple in these tough conversations and intervene, helping to provide a better quality of life for the couple.
Children and adolescent family members benefit the most from honesty and education about the disease, its effects, and what to expect as it progresses. MFTs can help by talking to minor and adult children with their parents together and individually, providing age-appropriate resources such as books, reputable Internet sites, and referrals to support groups that welcome family members of all ages.
The text of this brochure was written by Jennifer Hodgson, PhD, and Kristy Larson.
Use the AAMFT Consumer Update "Parkinson’s Disease" pamphlets to market your practice.