Good Samaritan Society-Specialty Care Community

By Martha Nance, MD, Director, Huntington’s Disease Center of Excellence at Hennepin County Medical Center

There is not yet a cure for Huntington’s disease, but several treatments have been found to reduce the symptoms and improve the quality of life. Today, there are medications to treat chorea, as well as drugs that address psychiatric and behavioral symptoms. Sometimes multiple interventions are used, with the plan of treatment evolving over the course of the disease.

Medications for Movement Disorders

Several drugs are used “off-label” to treat the chorea that people with Huntington’s disease experience, and one drug was approved by the FDA in 2008 specifically for the treatment of chorea. 

Drugs that block the effects of dopamine in the brain are commonly used to treat both the movement disorder and behavioral problems.  This group of drugs includes older compounds, such as haloperidol, fluphenazine, and chlorpromazine, and newer compounds such as risperidone, olanzapine, and quetiapine.  Drugs that reduce anxiety, such as alprazolam or clonazepam, may reduce movements that are made worse by anxiety.  Tetrabenazine, a dopamine-depleting drug, is the most recent drug to be used for chorea, and was approved for this use by the FDA after research showed that it reduced chorea by almost 25% in a group of people with Huntington’s disease. 

Co-enzyme Q10 and creatine are two vitamin-like substances, both of which support the function of the nerve cells’ furnaces, or mitochondria.  Both compounds are being tested to see if they slow or stabilize the course of Huntington’s disease.  While still controversial and unproven, these compounds may emerge as a useful Huntington’s disease treatment options.

All drugs have potential side effects as well as potential benefits.  The treating physician should always make it clear why a medication is being used, what the possible side effects might be, and what to do if a person experiences side effects.  Drugs that block or deplete dopamine have the potential to cause stiffness (rigidity), and to cause or worsen depression, and antianxiety drugs can cause sedation or sleepiness.

Medications for Psychiatric Conditions

A variety of psychiatric and behavioral symptoms can occur in people with Huntington’s disease.  The most common of these are depression, anxiety, and irritability.  Serotonin reuptake inhibitors, such as sertraline, fluoxetine, or paroxetine, may help these symptoms.  Severe mood swings or aggressive behavior can be blunted by using “mood stabilizers” such as valproic acid or gabapentin, or by the addition of antipsychotic drugs such as olanzapine or aripiprazole.  Antianxiety medications can help the anxiety that accompanies, and in turn, exacerbates these symptoms.  Physicians must monitor these Huntington’s disease treatments carefully to minimize side effects. 

In addition to medications, the treatment of Huntington’s disease should incorporate psychotherapy, speech therapy, physical therapy and occupational therapy to help people with Huntington’s disease to optimize their functional abilities.

Because Huntington’s disease affects the entire family, Huntington’s Hope raises post-secondary education scholarship money for the children of parents with Huntington’s disease. The organization hopes to raise $1 million in 2013 with 100 percent of Huntington’s disease donations going directly into an endowment fund to create these scholarships.

To help, please DONATE NOW

Good Samaritan Society – Specialty Care Community in Robbinsdale, Minn., owned and operated by the Evangelical Lutheran Good Samaritan Society, is one of only eight long-term skilled care centers in the United States with a dedicated program for individuals with Huntington’s disease.

by Martha Nance, MD, Director, Huntington's Disease Center of Excellence at Hennepin County Medical Center -------- Huntington’s disease is a neurodegenerative disorder. More than 30,000 individuals in the United States have been diagnosed with Huntington’s disease. Adult-onset Huntington’s disease symptoms usually begin when a person is in his or her 30s and 40s, but can begin earlier or much later. Huntington’s disease symptoms can include both behavior changes and movement disorders, with behavior changes often occurring first.

Early Huntington’s disease behavior symptoms can include irritability, mood swings, impulsivity, paranoia and apathy. Mild cognitive changes in Huntington’s disease symptoms progress to dementia over time. Patients may find it difficult to plan and prioritize tasks, start a conversation or focus on a project for any length of time. Decision making can be difficult, and learning new skills becomes difficult or impossible.

Movement problems include unsteady gait, poor coordination, and jerky or dance-like movements  of the arms, legs, face or other body parts (chorea). As the disease progresses, Huntington’s disease symptoms may include rigidity and dystonia (a stiff posture of a joint), and all people with Huntington’s disease eventually develop difficulty chewing, swallowing and talking. Frequent falls occur later in the course, and eventually people with Huntington’s disease are unable to walk or feed themselves.

A wide range of psychiatric symptoms can occur in patients with Huntington’s disease, including depression, anxiety, social withdrawal, substance abuse, psychosis, obsessive-compulsive symptoms and mania. The suicide rate is higher in families of Huntington’s disease patients than in the general population. Sleep patterns also may be affected with Huntington’s disease patients experiencing symptoms of either insomnia or excessive sleepiness.

In about five to ten percent cases, Huntington’s disease symptoms begin in childhood. This is called juvenile Huntington’s disease, and the progression of symptoms differs slightly from adult Huntington’s disease. Symptoms can include a decline in school performance or general physical skills. Rigid muscles may affect a young child’s walking gait and ability to talk and swallow. Seizures and tremors are much more common symptoms in children with Huntington’s disease than in adults.

Huntington’s Hope raises post-secondary education scholarship money for the children of parents with Huntington’s disease. The organization hopes to raise $1 million in 2013 with 100 percent of Huntington’s disease donations going directly into an endowment fund to create these scholarships.

To help, please DONATE NOW.

Good Samaritan Society – Specialty Care Community in Robbinsdale, Minn., owned and operated by the Evangelical Lutheran Good Samaritan Society, is one of only eight long-term skilled care centers in the United States with a dedicated program for individuals with Huntington’s disease.

 

 

 

by Sharon St. Mary, Executive Director, Good Samaritan Society – Specialty Care Community

There’s no question that Huntington’s disease is difficult for the individual diagnosed. But it also takes its toll on the family. That’s why it is important to donate to Huntington’s disease.

Because Huntington’s disease is diagnosed in young men and women – typically between the ages of 30 and 50 – it can place an enormous financial burden on a family. This often is just at the time when families are sending children to college. Without donations to Huntington’s disease, many children of parents with Huntington’s disease miss out on the opportunity to pursue their hopes and dreams.

You can help.

Through the Huntington’s disease donations of caring individuals, Huntington’s Hope raises scholarship money for children of parents with Huntington’s disease. The organization hopes to raise $1 million in 2013 with 100 percent of Huntington’s disease donations going directly into an endowment fund to create these scholarships.

To help, please DONATE NOW.

Good Samaritan Society – Specialty Care Community in Robbinsdale, Minn., owned and operated by the Evangelical Lutheran Good Samaritan Society, is one of only eight long-term skilled care centers in the United States with a dedicated program for individuals with Huntington’s disease. The Huntington’s disease donation program for scholarships through Huntington’s Hope was started here.

 

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by Sharon St. Mary, Executive Director, Good Samaritan Society – Specialty Care Community The Good Samaritan Society – Specialty Care Community in Robbinsdale, Minn., a suburb of Minneapolis, has reserved a third of its beds for individuals with Huntington's disease. This community is one of only eight in the United States with a dedicated program for individuals with Huntington's disease. Here, these men and women have private living spaces and are... (more...)

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