The role of the caregiver or care partner in Parkinson’s disease (PD) is ever changing, and the demands increase as the disease progresses and symptoms worsen. While PD affects every person differently, the symptoms of PD in the early stages are generally mild. However, it’s important to remember that not every person with PD experiences the same symptoms, and the severity of symptoms differs among patients.
What to expect in the early stages of Parkinson’s disease
The early stages of PD are medically classified as Stage one and Stage two by the Hoehn and Yahr scale:
- Stage One of Parkinson’s Disease – In stage one, the earliest stage, the symptoms of PD are mild and only seen on one side of the body (unilateral involvement), and there is usually minimal or no functional impairment. The symptoms of PD at stage one may be so mild that the person doesn’t seek medical attention or the physician is unable to make a diagnosis. Symptoms at stage one may include tremor, such as intermittent tremor of one hand, rigidity, or one hand or leg may feel more clumsy than another, or one side of the face may be affected, impacting the expression.
- Stage Two of Parkinson’s Disease – Stage two is still considered early disease in PD, and it is characterized by symptoms on both sides of the body (bilateral involvement) or at the midline without impairment to balance. Stage two may develop months or years after stage one. Symptoms of PD in stage two may include the loss of facial expression on both sides of the face, decreased blinking, speech abnormalities, soft voice, monotone voice, fading volume after starting to speak loudly, slurring speech, stiffness or rigidity of the muscles in the trunk that may result in neck or back pain, stooped posture, and general slowness in all activities of daily living. However, at this stage the individual is still able to perform tasks of daily living.1,2
Caregiving in the early stages of Parkinson’s disease
One of the earliest challenges for the care partner is coping with the diagnosis of PD. Learning that someone has PD can bring up a lot of emotions for both the person living with PD and their care partner, as PD greatly impacts your life. Learning about the disease, the potential symptoms, and the treatment options can provide you and your loved one with knowledge to make informed decisions.
As the disease progresses into stage two, and the symptoms of PD are more noticeable and start to impact daily life, many care partners find they worry about how the disease will progress and how to cope. In stage two, care partners increasingly help the patient with a variety of activities, such as helping them because of their slowness in moving. Care partners with a loved one in stage two of PD may also find they are involved in motivating or reminding their loved one to do their physical therapy exercises, including vocal exercises to maintain vocal quality. Medication management is also an important role of the care partner. Caregivers often make sure prescriptions are refilled ahead of time, put medications into pill dispensers, and keep track of dosing schedules to make sure the patient takes his or her medication on time. Maintaining the dosing schedule of medications is critical to managing symptoms.3
As an individual’s PD progresses from stage two into stage three, the care partner's role becomes more involved. The strain on the care giver intensifies as the disease worsens, and asking for and receiving help, as well as taking time out for yourself, become increasingly important for the care partner's well-being.