Neurological Disease
What can be expected as cerebral palsy progresses?

The progression of cerebral palsy varies a great deal. In general, however, people with cerebral palsy have some common experiences in the final weeks or months:

  • Decreasing strength and energy
    This causes decreasing mobility, communication, alertness and ability to breath and cough. Usually it’s not a cause of physical distress. Rather it’s a gradual fading, which eventually results in less time awake and more time asleep.
  • Decreasing appetite and eating
    As with people in advanced stages of any illness, people with cerebral palsy become less active and so need fewer calories. They also lose the ability to process nutrients, and can become uncomfortable if they’re made to eat. It’s helpful for caregivers to understand this, as part of the final stages of an illness.
  • Decreasing lung strength and function
    The lungs may no longer be able to expand fully. Scoliosis, a sideways curvature of the spine, may constrict the chest; or a person’s general weakness may prevent normal breathing. This results in poor coughing and clearing of secretions, which in turn brings a risk of infection.

People who experience shortness of breath may find relief with a range of measures:

  • Medications
    Opioids seem to reduce the effort of breathing and block distressing signals of air hunger and pain. Oxygen may also help. Anxiety medications may be used to ease distress that can aggravate breathlessness.
  • Air movement and temperature
    Breathing can be eased by using a fan or opening a window to circulate air, and by keeping the air in the room cool and less humid.
  • Body position
    Some positions can ease breathing, typically sitting propped up or on one side.

In the final hours or days of life, people almost always are less alert. Often a chest infection develops. Pneumonia is a serious complication and can be the reason that death occurs. With attention to comfort, this stage can be a calm, gradual slipping away. If there is any pain, restlessness or shortness of breath, they can be controlled with medications such as opioids, sedatives or medications for anxiety.

It is useful to discuss possible developments and treatments with the health care team. Such discussions can be very difficult for a family, but it helps to develop a plan for dealing with what may happen before it occurs. If the patient is conscious, communicating, and old enough to understand treatment decisions, then the person may want to be part of these conversations.