Implications for SLP Practice
The speech-language pathologist can contribute to the care of the person with Huntington's disease during all stages of the disease. Early and continued intervention by an SLP will help the affected person to preserve as much of their communicative ability as possible.
Working early-on with the SLP also gives the person with Huntington's disease the opportunity to learn compensatory strategies before new skills become more difficult to learn. These compensatory strategies can be used for more effective communication over the course of the disease.
The speech-language pathologist will work with both the person with HD and their family/caregivers. Early on, conversational techniques for the speaker and the listener can become a part of improved communication.
To determine level of function and guide appropriate therapy, during assessment the SLP will consider the following aspects as noted by the American Speech-Language_hearing Association:
According to the Movement Disorders Society, while research is limited, there is recent (though not comprehensive) data supporting the use of respiratory retraining exercise, vocal fold adduction exercise, and oral motor exercise, for positive clinical outcomes; a follow-up pilot study of 5 individuals with HD using these exercises found that cranial nerve exam scores were significantly improved after 30 days of practicing the exercises.
Joanne Hunt, RN, wrote the following passage which is relevant to every caregiver or service provider for a person with HD. She is herself a caregiver and is also a person at risk for HD.
"Loss of control, power and autonomy is a major issue in Huntington's disease, as this is a neurological disease in which there are cognitive, emotional and physical changes. But one important thing to remember is that a person with Huntington's does know what is going on around them.
Remember they were a normal, healthy, high functioning individual that slowly looses control of their movements, actions, ability to attend to their personal care and eventually needing to depend on a person or persons for all their activities of daily living. As an individual they are noticing themselves how they are loosing their abilities and this is a scary and emotional period for them. We as health caregivers have to in different ways depending on the stage of illness help the person with Huntington's Disease feel they still have some control of what is going on in their lives. We always have to give them some power and decisions to make."
Compiled 11/2012. Mary Patteson.
Working early-on with the SLP also gives the person with Huntington's disease the opportunity to learn compensatory strategies before new skills become more difficult to learn. These compensatory strategies can be used for more effective communication over the course of the disease.
The speech-language pathologist will work with both the person with HD and their family/caregivers. Early on, conversational techniques for the speaker and the listener can become a part of improved communication.
To determine level of function and guide appropriate therapy, during assessment the SLP will consider the following aspects as noted by the American Speech-Language_hearing Association:
- Part I. Functioning and Disability
- Body structures and functions (positive terms) and “impairments” in these structures or functions (negative terms)
- Activity and participation levels of functioning (i.e., execution of a task and involvement in a life situation, respectively; positive terms) and “limitations and restrictions” on these (negative terms)
- Body structures and functions (positive terms) and “impairments” in these structures or functions (negative terms)
- Part II. Contextual Factors
- Environmental factors (the physical, social, and attitudinal environment in which people live—can be facilitating or hindering)
- Personal factors (gender, age, and other variables that are not easily classified and vary by society and culture)
- Environmental factors (the physical, social, and attitudinal environment in which people live—can be facilitating or hindering)
According to the Movement Disorders Society, while research is limited, there is recent (though not comprehensive) data supporting the use of respiratory retraining exercise, vocal fold adduction exercise, and oral motor exercise, for positive clinical outcomes; a follow-up pilot study of 5 individuals with HD using these exercises found that cranial nerve exam scores were significantly improved after 30 days of practicing the exercises.
Joanne Hunt, RN, wrote the following passage which is relevant to every caregiver or service provider for a person with HD. She is herself a caregiver and is also a person at risk for HD.
"Loss of control, power and autonomy is a major issue in Huntington's disease, as this is a neurological disease in which there are cognitive, emotional and physical changes. But one important thing to remember is that a person with Huntington's does know what is going on around them.
Remember they were a normal, healthy, high functioning individual that slowly looses control of their movements, actions, ability to attend to their personal care and eventually needing to depend on a person or persons for all their activities of daily living. As an individual they are noticing themselves how they are loosing their abilities and this is a scary and emotional period for them. We as health caregivers have to in different ways depending on the stage of illness help the person with Huntington's Disease feel they still have some control of what is going on in their lives. We always have to give them some power and decisions to make."
Compiled 11/2012. Mary Patteson.