• Managing Late Stage Symptoms of HD Ron Risley, MD 01June2002
• Start Early!
• Use It or Lose It!
• Keep involved in social activities.
• Exercise the brain.
• Prepare a durable power of attorney for health care
• Discuss attitudes, expectations, and desires for end of life care.
• Use an Integrated Approach
• Biological
• Exercise regularly -- brain and body.
• Consider medications before there is a crisis.
• Pay attention to medical problems that might be missed because of communication difficulties
• Get a speech/swallowing evaluation
• Be mindful of bowel and bladder habits
• Watch for signs and symptoms of pneumonia or occult infection, especially mental status changes
• Psychological
• Identify stressors.
• Talk about problems and fears.
• Social
• Stay connected!
• Use the HD community.
• Educate friends and associates.
• Spiritual
• Make contact with people, ideas, and institutions that can address the big questions of meaning and purpose.
• The affected person is often much more ready to address end of life questions than caregivers and family are.
• Reassess Periodically
• Mark a date on the calendar when, twice a year or so, you take a couple of hours to assess the current state of affairs and your goals.
• Review the previous assessment.
• Don't just respond to crises.
• Pay Attention to Boundaries
• Caregivers won't be much good if they're burned out.
• Perspective helps identify problems earlier.
• Sometime, less intervention is better.