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S&K SEPTEMBER 2019 – VOLUME 12, ISSUE 5

 

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.


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