Dr. Edmondson is a medical physician and a psychiatrist from Duke University, North Carolina who gave several workshops at the recent HDSA convention in Raleigh. She is also a founder of the North Carolina Center for the Care of Huntington's Disease NC-CCHD), a new and exciting organization that provides education, medical and social service care for Huntington's (HD) families in North Carolina. And very importantly she belongs to an HD family and brings a personal perspective to care.

In the "Recognizing Trigger Behaviors" workshop she first spoke of empathy or the capacity to think and feel the inner life of those who have HD. It was from this perspective that she talked about irritability in HD: What it is, why it happens, how it feels for both the HD person and care-partners, how to understand it, and tips to control it.

Cognitive Behavioral Therapy for HD: What Dr. Edmondson taught was a very practical short course on behavioral therapy (CBT). CBT is the type of treatment which promotes understanding of the problem, which in turn can result in positive changes in behavior. She and other HD experts believe this type of therapy should be done early in HD, and as first step before medications are prescribed. In earlier stages of HD behavioral therapy can be very helpful for the both the HD person and their care-partner. In late stage HD, this type of therapy is most helpful for the care-partner.

What follows is a review of her talk and handout materials. My opinion? This session was among the best at HDSA, Raleigh.

Why does irritability occur? Because HD causes difficulty with:

  • Recognizing social cues and non-verbal communication
  • Projecting the social consequences of behavior
  • Sorting out and ignoring unimportant information
  • Controlling actions

How the HD person feels that promotes irritablity:

  • I don’t know what to expect from other people, I am often perplexed by how others react to me.
  • I can't stop blurting out rude comments, even if I hurt the people I care about
  • I can’t read emotions or sometimes miss-read emotions in the face of others
  • Being around new people is overwhelming.
  • Noise, colors, what people say to me or each other flood my brain, and I get overwhelmed.

Characteristics of irritability:

  • One of the earliest symptoms
  • Is very treatable
  • Triggered by modest or trivial stimuli
  • Is not premeditated or involve planning
  • Serves no obvious goal or aim
  • No buildup
  • Brief outbursts of rage followed by long period of calm
  • Person is upset after outburst, concerned, embarrassed as opposed to blaming others or justifying behavior

Early cues of distress:

  • Restlessness
  • Increased volume and rate of speech
  • Repetitive questions or comments
  • Staring or intense eye contact
  • Moving into "personal space" of others
Care-partner responses: How and what to say:
  • Use soft tone of voice
  • Give reassurance
  • Use "I" -- not "You" -- messages
  • Let the upset person do most of the talking
  • Summarize the concern

Care-partner responses: What to do (or not to do):

  • Use a non-threatening body stance - relaxed, arms down at side and not crossed or on hips
  • Give the person space. Keep about 1.5 - 2 feet away or more if the person is escalating
  • Try not to touch the person. If you must touch them, tell the person what you are going to do.
  • Manage your emotions, stay calm.

If behavior is more severe and threatening:

  • Don't fight back or argue.
  • Make the environment as calm and safe as possible
  • Stop or slow down the car. Take the kids to another room. Leave the restaurant.
  • Try a distracting sensory event. Make a loud noise. Clap your hands, or call the person's name sharply.
  • Call for help. Have a safety plan in place.
Set realistic goals:
  • Set goals you believe can be achieved.
  • Prioritize the goals, and work on them step by step. Don't tackle them all at once.
  • Give your plan time to work.
  • The most significant change results from changes in the environment or change in care-partner behavior.
  • Be Flexible

Common Solutions:

  • Simplify the environment
  • Create routines
  • Prepare the person for change
  • Outline a few different solutions…Plan A, B, C
  • Consider time frames and be patient
  • Learn from others: Meet other HD caregivers, join an online discussion group, get ideas from family members, work with a DBT or CBT therapist (Dialectical or Cognitive Behavioral Therapy.

And there is more: In the same workshop she talked about perseverative -- or obsessive behaviors and gave advice on how to recognize and deal with this symptom as well. The entire presentation -- and others should be up soon at HDSA.org. I urge you to read them all.