Have You M.E.T. Huntington Disease?

Movement

• Involuntary movements (chorea)
  • Legs, arms, torso and face are affected.
• Diminished coordination of voluntary movements
  • An unsteady gait and slurred speech can create an intoxicated appearance.
• Falls are a common risk for persons with Persons with HD will eventually become unable to walk.
  • Physiotherapy or occupational therapy assessment or treatment can extend mobility and independence and decrease the risk of falls and injuries. Consider possible side effects of medications.
• Increased nutrition and hydration needs
  • Assure easy access to high caloric meals, drinks, supplements. Allow for sufficient time to support the person; if needed, provide several smaller meals; create a supportive environment (reduce disturbances, increase measures of comfort).
• Speech impairment
  • For most people affected by HD, it will become increasingly difficult to produce clear Consult a speech language pathologist (SLP) in the early stages of the disease.
  • Take time to get to know the person and learn to better understand the individual’s way of articulation.
• Swallowing difficulties and risk of choking or aspiration pneumonia.
  • Seek a swallowing assessment and ongoing consultation from a speech language pathologist.
• Disturbed sensation
  • Pain tolerance is often abnormally high (e.g. dental abscess/cigarette burn). Small changes in behaviour or appearance can be signs of serious illness.
• Incontinence
  • Possible unawareness of full bladder and bowel; impaired control of voluntary movements; regular toileting routine can be helpful.
• Altered perception of body temperature
  • Adjust room temperature and clothing to individual needs.
• Excessive perspiration
  • Respond to increased needs for personal care.

Emotion

There are a number of psychiatric disorders induced through the physical changes in the brain that can affect a person with It is important to consult a psychiatrist to discuss medications and possible treatment options available. The disorders could include the following:

• • Depression
  • Anxiety
  • Suicidal ideation
  • Psychosis
  • Obsessive compulsive disorder
  • Sexual disorders
  • Bipolar disorder

Common emotional reactions when diagnosed with a chronic, incurable, terminal disease are:

• • Fear of possible abandonment, pain and suffering and grief.
  • Loss of hopes and wishes for the future.
  • Loss of abilities and competencies.
  • Loss of control and independence.

These emotional reactions can be intensified and complicated through the genetic component of HD.

• • HD affects lives over generations.
  • HD can overshadow childhood.
  • People affected by HD might have more knowledge about what lies ahead than they might wish to have.
  • Inherent risk for children and grandchildren.

Personality changes induced through the physical changes in the brain.

• • Low frustration tolerance and short temper.
  • Impulsivity and irritability.
  • Inflexibility and obsessive compulsive behaviour.
  • Apathy, loss of drive and lack of initiative.
  • Decreased ability to empathize with others’ feelings.

Thinking

• Cognitive Disorder and Impairment
  • Difficulty with short-term memory and retrieval; long-term memory stays intact.
  • Difficulty understanding complex information and sequencing.
  • Slow response time, short attention span (easily distracted).
  • Difficulty learning new things (but not impossible).
  • Lack of ability in problem-solving and reasoning, poor judgment skills.
  • Altered visual-spatial sense and altered sense of time.
  • Tendency for perseveration and repetition.
  • A narrow focus on what is coming next.
  • Lack of self-awareness and unaware of limitations and symptoms.
• Communication Difficulties
  • Word-finding difficulties.
  • Difficulties beginning conversations and staying on topic.
  • Poor listening skills and concentration.
  • Lack of spontaneous communication.
  • Impaired facial expressions.
  • Impaired reading and writing ability.
• Sometimes responsive behaviour can be the most effective method or the only method of communication for a person with HD.
• An improvement of communication and comprehension can lead to a decrease of responsive behaviour.
• Caregivers need to take the responsibility for effective communication.
• Communication will be highly impaired in the advanced stages of HD.
• Be aware that the person with HD has comprehension of his or her whereabouts and of the situation, and can hear and see you.
• It is the ability to communicate that decreases, not the need.

Resources

For more information, visit our fact sheets:

HSC Responsive Behaviours Fact Sheet HSC Communication Strategies Fact Sheet

Ongoing support, education and information is available from the Huntington Society of Canada (HSC). You can find a listing of our Family Services team members at www.huntingtonsociety.ca/family-services-team.