Huntington’s, other neurodegenerative diseases affect family, too
Sometimes the fear of the unknown is just as frightening as the fear of the inevitable. Learning you’ve inherited a genetic trait that leaves you with a 50-50 chance of developing a debilitating disease, possibly while facing the enormous stresses of caring for a loved one afflicted by the same condition, is a perfect example. Deep down you know you’re at risk and might very well be watching a preview of what will eventually happen to you. Either way, the fear is inescapable.
That’s the way it is with Huntington’s disease. A genetic, neurodegenerative brain disorder caused by a single defective gene on the fourth chromosome, Huntington’s leads to the progressive loss or degeneration of neurons in the brain, resulting in changes in cognition and mental processing, physical abilities, speech, mood and psychological effects. Some people also develop a movement called chorea, a term derived from a Greek word meaning “dance,” where afflicted individuals lose physical control and make involuntary spastic movements, as if dancing. Irritability, depression, anxiety, mood swings and obsessive-compulsive behaviors are among the many challenges those with Huntington’s face. The awful truth is, those that have Huntington’s eventually lose their very identities to the disease, physically, psychologically and mentally.
While there’s no cure for Huntington’s or other neurodegenerative diseases, such as Multiple Sclerosis and ALS (amyotrophic lateral sclerosis), specialized treatment for people with the diseases is available locally.
In all, the National Institute of Environmental Health Sciences reports that neurodegenerative diseases affect millions of people worldwide, including Huntington’s, Parkinson’s and other diseases. Treatment can ease symptoms, but not the progression of the diseases. Genetics also play a role, however, the occurrence and severity of the disease depends on environmental factors.
With Huntington’s, for instance, the defective gene that leads to the disorder is “dominant.” If you have a parent with the disease, and share that same gene, it’s not a matter of if you’ll develop symptoms, but rather when. Onset typically takes place between the ages of 30 and 50, though symptoms can present in early childhood or much later in life. After that, degeneration occurs over a period of 10 to 25 years, meaning patients and their family members will likely need resources and assistance for many years to come.
In addition to the support and care for people with a neurodegenerative disease is the need for caretakers of those afflicted to attend to their own well-being. Care giving is not only physically demanding and time-consuming, it’s also mentally and emotionally draining. Family members and other caregivers — including professionals such as social workers, nurses and aides — are on the front line. Often, they live in a state of perpetual stress, leaving them vulnerable to shorting-out physically and mentally. Those who live with the uncertainty of their future health, or possess a genetic marker for an illness, are at even greater risk.
Socializing, regular exercise and eating and sleeping well are good ways for caregivers to tend to themselves, and help keep their lives in balance. Support groups also are helpful, especially in easing the burden that many caregivers feel. By talking with others dealing with the same or similar situations, people can discover new ways of handling difficult problems. They’re also more likely to see that they’re not alone in their situation and that there’s a united front ready to assist them, from people new to their position to those who have been coping with it for a decade or more.
Building awareness and support for the diseases also is important. On Saturday, a team from the Center for Neurodegenerative Care at ArchCare at Ferncliff in Rhinebeck will head to Albany to participate in the Huntington’s Disease Society of America’s fundraising effort, the 2015 Team Hope Walk. That same day a Parkinson’s awareness event will be held on our center’s campus.
Until there’s a cure for Huntington’s and other neurodegenerative diseases, there is comfort and security for people coping with them. All of that begins with compassionate care and raising awareness, along with a healthy dose of hope.
Charissa Brown, program director for the Center for Neurodegenerative Care at ArchCare at Ferncliff in Rhinebeck, has worked in healthcare settings and non-profit organizations throughout New York. She earned a Master of Social Work from the State University of New York at Albany, a bachelor’s in psychology from SUNY Plattsburgh and is a member of the National Association of Social Workers.
Fundraiser/Resources
•Huntington’s Disease Society of American’s Fishy Frolic Team Hope Walk in Albany:
http://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=639
•Huntington’s Disease Society of America: http://hdsa.org/
•The Center for Neurodegenerative Care at ArchCare at Ferncliff: www.archcare.org/
•The Mary and Jim White Unit for the Care of People with Huntington’s Disease at ArchCare at Terence Cardinal Cooke Health Care Center: www.archcare.org/specialized-care/huntingtons-disease
•University of Connecticut Health Center, Huntington’s Disease Program: http://psychiatry.uchc.edu/clinical/specialty/huntingtons.html
•Huntington’s Disease Center at Columbia University Medical Center, New York State Psychiatric Institute: www.columbiapsychiatry.org/researchclinics/huntingtons-disease-center
•University of Buffalo, New York State Center of Excellence in Bioinformatics & Life Sciences: www.buffalo.edu/bioinformatics/research-areas/neurodegenerative-disease.html
•International Huntington’s Disease Association: www.huntington-assoc.com/
•Family Caregiver Alliance: https://caregiver.org/
•Institute of Neurodegenerative Disorders: www.indd.org/resources.htm