In any discussion of the symptoms of Parkinson disease (PD), the loss of personal independence is often an important issue. Parkinson’s disease is a progressive disorder affecting mobility, dexterity, and balance. Activities of daily life—such as buttoning a shirt collar or fastening a bra strap — become more difficult as the disease advances. People with PD are often embarrassed and frustrated by their increased dependence on a spouse or caregiver. Caregivers also report more depression, anger, and apathy in patients as they come to need more help and become more limited in their activities and capabilities.
Frustration is understandable. The best course of action for PD patients combating their limitations is for them to complete daily activities for themselves. Even if this takes more time, it helps patients retain dexterity and a sense of normality. For the caregivers, this means going against their instinct to help. Although helping may seem a kindness to caregivers and people with PD, assisting patients with daily tasks is a slippery slope. Aiding someone with PD to button a cuff or lace a shoe on one occasion makes it more likely that they will seek help the next time. Eventually patients becomes more reliant on the caregivers, less able to complete the task unassisted, and more frustrated by his or her own increasing limitations.
Encouraging patients to complete tasks for themselves reinforces the central objective of their management, namely, the conservation of personal independence. Clear communication between patients and caregivers on the importance of remaining independent is necessary. This helps to avoid the impression that caregivers who decline to help with daily tasks are uncaring or hostile and thus to avoid the development of tension between patients and caregivers.
People with PD should attempt to do everything themselves, even if it takes longer, is getting more difficult, and causes irritation. For difficult daily activities, it may help to think of the tasks as a component of physical therapy (in addition to regular exercise and any therapy that has been prescribed). The importance of accomplishing daily tasks independently despite the physical limitations of PD cannot be overemphasized.
Caregivers must remain supportive but not “enablers” of dependency. Caregivers must let PD patients accomplish daily tasks on their own as much as is possible. Allowing more preparation time may be helpful when planning an activity.
People with PD must commit to completing all daily activities unaided for as long as possible. When it comes to personal independence and a disease like PD, truly, if you don’t use it, you lose it.