Cruisin' For A Cure for Huntington's Disease Car, truck and motorcycle event
that spreads awareness of Huntington's Disease & raises money for Huntington's Disease Society of America. For my son, Greg, there was no better way to spread awareness and raise funds to support Huntington's Disease Society of America (HDSA) than to have a car, truck and motorcycle show. Huntington's Disease is a fatal
genetic disorder that causes the progressive breakdown of nerve cells in the brain. It is a degenerative disease which has a broad impact on the person's functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders. Currently, there is no cure for Huntington's Disease. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms Include:
Personality changes, mood swings & depression
Forgetfulness & impaired judgment
Unsteady gait & involuntary movements (chorea)
Slurred speech, difficulty in swallowing & significant weight loss
Early stage HD usually includes subtle changes in coordination, perhaps some involuntary movements (chorea), difficulty thinking through problems and often a depressed or irritable mood. Medications are often effective in treating depression or other emotional problems. The effects of the disease may make the person less able to work at their customary level and less functional in their regular activities at home. In the middle stage, the movement disorder may become more of a problem. Medication for chorea may be considered to provide relief from involuntary movements. Occupational and physical therapists may be needed to help maintain control of voluntary movements and to deal with changes in thinking and reasoning abilities. Diminished speech and difficulty swallowing may require help from a speech language pathologist. Ordinary activities will become harder to do. In the late stage, the person with HD is totally dependent on others for their care. Chorea may be severe or it may cease. At this stage, the person with HD can no longer walk and will be unable to speak. However, he or she is generally still able to comprehend language and retains an awareness of family and friends. When a person with HD dies, it is typically from complications of the disease, such as choking or infection and not from the disease itself. In approximately 10% of cases, HD affects children or adolescents. The symptoms of Juvenile HD (JHD) are somewhat different than adult onset HD and may include stiff or awkward walking, increased clumsiness or changes in speech. The ability to learn new information may decline and the child may lose skills they previous had. JHD typically progresses more rapidly than adult onset HD. Predisposition and typical initial symptoms of Juvenile Onset HD include:
Positive family history of HD, usually in the father
Stiffness of the legs
Clumsiness of arms and legs
Decline in cognitive function
Changes in behavior
Seizures
Changes in oral motor function
Chorea in an adolescent
Behavioral disturbances
For additional information regarding Huntington's Disease or Juvenile Huntington's Disease please visit the Huntington's Disease Society of America (HDSA) website at www.hdsa.org. Thank you for your prayers and support for those affected by HD/JHD.
