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.
