Managing Care in Mid-Stages
As a chronic, progressive condition, the symptoms of Parkinson’s disease (PD) worsen over time. However, PD is a highly unique disease, and no two patients have the same experience. Not every person with PD experiences the same symptoms, and the severity of symptoms differs among people living with PD. Likewise, the caregiver/care partner’s experience also varies, depending on the needs of their loved one.
What to expect in the mid-stage of Parkinson’s disease
The mid-stage of PD, or stage three as defined by the Hoehn and Yahr scale, is characterized by loss of balance and slowness of movement. Balance is compromised by the inability to make the rapid, automatic and involuntary adjustments necessary to prevent falling, and falls are common at this stage. The other primary motor symptoms of PD – resting tremor and stiffness – are also present at this stage, and the person may also experience many of the non-motor symptoms, such as fatigue, constipation, and sleep problems. An important clarifying factor of stage three is that the patient is still able to engage in their daily living activities, such as dressing, hygiene, and eating.1,2
Caregiving in the mid-stage of Parkinson’s disease
As PD progresses into the mid-stage of the disease, the care partner's duties and burden significantly increase. Care partners at this stage are frequently called upon to help their loved one as their slowness of movement makes daily activities more challenging. While the person with stage three PD can still dress and feed themselves, these activities are slower.
It is also common at this stage of the disease for frustration around communication problems to increase. PD can affect speech, making the voice softer or hoarse, or slurring the speech. These symptoms can cause significant difficulties in communication between the care partner and their loved one, which can be frustrating for both. Speech therapy and vocal exercises can be helpful, improving the quality and loudness of the voice and improving communication.3,4
Another challenge care partners face in the mid-stage of PD is an increase in their worry. Care partners worry about how the disease will progress and how they will cope with the ever-increasing demands. It is critical that the care partner acknowledges and takes care of their own needs, including getting help and taking time out for themselves.3
Fatigue and excessive daytime sleepiness are common symptoms experienced by people with PD. Care partners may find their schedules need to be flexible to accommodate fluctuations in their loved one’s energy levels.5
Making things easier for your loved one with Parkinson’s disease
There are simple substitutions and changes that can be made in the household environment that can make it easier for a loved with PD to continue to engage in daily activities, including:
- Getting electric toothbrushes and shavers to make daily hygiene easier
- Purchasing adaptive equipment like cups with lids, large-handled utensils, or rocker knives.
- Getting shoes with Velcro or elastic shoelaces.
- Installing handrails in the bathroom to prevent falls.
- Moving furniture as needed to create clear pathways through rooms.
- Removing throw rugs and leveling thresholds to prevent tripping.5
Occupational therapists can also be a resource, as they are trained in helping people with conditions like PD and can provide recommendations on adaptations.