Each person with PD is different in how he or she is affected by the disease and also in how he or she reacts to the life changes that are associated with it. Additionally, since Parkinson’s is a multi-system disorder, affecting nearly all the systems in the body, there are both movement and non-movement symptoms to address. A comprehensive care approach is needed to address the complexity involved in treating the many symptoms of PD. In addition to your movement disorder specialist or neurologist, a comprehensive care team might include members of the family, physical therapists, exercise trainer, nutritionist, occupational therapist, speech pathologist, and psychologist or neuropsychologist. Many communities also offer support groups, exercise groups or senior centers that can be part of the plan.

Primary motor symptomsPrimary motor symptoms include tremor, rigidity or inflexibility of the muscles causing pain and cramping, slow movement and short shuffling steps, impaired balance and coordination which increase the chance of falling, and “freezing” or the inability to initiate movement.

Secondary motor symptomsSecondary motor symptoms include the following, but not all people with Parkinson's will experience all of these: stooped posture, fatigue, impaired motor dexterity, decreased arm swing, speech problems, loss of facial expression, speech problems, difficulty swallowing, drooling.

Non-motor symptomsNon-motor symptoms can be as troublesome as the primary movement symptoms of the disease. The non-motor symptoms can include: pain, dementia, sleep disturbances, constipation, depression, anxiety, slowed thinking, memory difficulties, and urinary problems.

Early StageDuring the early years with Parkinson’s, symptoms are often not disabling, and the emphasis is on maintaining health and wellness. People with Parkinson’s are encouraged to embrace exercise as a primary therapy for combating both the symptoms of PD as well as offering potential neuroprotection. An exercise program should include exercises for flexibility, range of motion, strength, balance and aerobic conditioning. It is the latter which confers neuroprotection when one exercises hard enough to “break a sweat.” The duration, intensity, challenge and repetition need to be continually increased in order to provide the most benefit. The other exercises provide some symptomatic relief and help keep muscles from becoming rigid.

Mid StageAfter several years living with Parkinson’s, challenges to quality of life may increase. More symptoms occur and existing symptoms worsen. There may be challenges in areas such as mood, communication and socialization. Falling may become an issue as well as driving. Although patients may have been on initial therapies such as a MAO-B Inhibitor or a Dopamine Agonist, Levodopa/Carbidopa therapy is usually needed at this stage. Levodopa is a substance that is converted into dopamine by an enzyme in the brain and normalizes the movement control centers of the brain. Discovered decades ago, it is still considered the “gold standard” against which all treatments are measured.

After a number of years of drug treatment, many patients begin to lose sustained treatment benefit. The result is increasing “off” time, or time without relief from symptoms. Increasing the amount of medication can usually minimize the off time to acceptable levels for several years. After three to six years, patients often also develop uncontrolled movement called dyskinesia as a result of the higher level of medication. At this stage, deep brain stimulation surgery (DBS) can improve symptoms and reduce the dosage of drug treatment.

Late StageIn the later stages of living with Parkinson’s the focus in on finding ways to optimize the quality of life. The issues that people may face are bed and seating comfort, transfers to and from chairs, and home health needs. Emotional and social support issues become important. Care partners need to call on the full support team to avoid burnout.

Additional resources

Parkinson’s Disease Foundation

American Parkinson Disease Association

National Parkinson Foundation

Parkinson’s Action Network

Michael J. Fox Foundation