Have You M.E.T. Huntington Disease?
- 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.
- 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.
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:
- Suicidal ideation
- 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.
- 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.
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.