Coping with a Life-Threatening Illness
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Huntington's disease is a genetic disorder that progressively damages brain cells. Learn about the symptoms and risk factors for Huntington’s disease and ways to live with the disease after diagnosis.
Huntington’s disease (HD) is a progressive, inherited, degenerative brain disorder that produces physical, mental, and emotional changes. Named for George Huntington, the physician who first described the illness in 1872, Huntington’s disease used to be known as Huntington’s chorea, from the Greek for choreography or dance. The name refers to the involuntary, jerky movements that can develop in later stages of the illness.
Although it is less common than some conditions characterized by similar symptoms, such as Parkinson’s or Alzheimer’s disease, approximately 30,000 people in the United States have Huntington’s disease. It affects men and women equally across all ethnic and racial lines. While more common in adults, juvenile Huntington’s accounts for about 5 percent of all cases.
There's no cure for Huntington's disease. So, if you or a loved one has been diagnosed with it, you might feel fearful about the road ahead. Or maybe you haven't received a diagnosis, but fear you're at high risk due to your family's medical history. Learning more about the disease and available self-help measures can help to empower you to pursue a rich and meaningful life.
Huntington’s disease affects someone’s ability to think, talk, and move by destroying cells in the basal ganglia, the part of the brain that controls these capacities. Caused by a gene mutation that leads to a toxic accumulation of protein in the brain, Huntington’s is inherited from either one or both parents.
Every child of a parent who carries the HD gene has a 50 percent chance of inheriting the abnormal gene. Pre-symptomatic testing (see below) can determine whether someone is likely to develop the disease. A child who inherits the Huntington’s gene will eventually develop the illness, although onset typically does not occur until ages 35-50 or later. The good news: if a child does not inherit the Huntington’s gene, there is no risk of developing the disease or of passing it on, since Huntington’s does not “skip” generations.
Because Huntington's disease affects the mind, body, and emotions, symptoms often mimic other conditions. The general symptoms in early stages can include poor memory; difficulty making decisions; mood changes such as increased depression, anger or irritability; a growing lack of coordination, twitching or other uncontrolled movements; difficulty walking, speaking, and/or swallowing. The order in which symptoms develop will vary from person to person.
[Read: Dementia Symptoms, Types, and Causes]
Below is a summary of symptoms by type: physical, mental, and emotional.
Over time, these symptoms may progress to a stage where the person loses the ability to recognize familiar objects, people and places.
Initial emotional symptoms are usually subtle, and thus easy to misinterpret. Many conditions and life circumstances can trigger mood changes, so it is especially important to know what psychiatric signs may indicate Huntington's.
Depression, the most common psychiatric symptom of Huntington's Disease, will generally manifest as:
A person with Huntington's Disease may eventually begin to exhibit psychotic behavior, such as delusions, hallucinations, inappropriate behavior (unprovoked aggression, for example), and paranoia.
Genetic testing can diagnose Huntington's at every stage of the life cycle.
There are three categories for testing:
Pre-symptomatic testing is usually requested or recommended when a parent is known to have, or is suspected of having, Huntington's Disease, or an at-risk parent is still living, but doesn't know whether they carry the Huntington's gene.
If someone's grandparent has Huntington's Disease but the parent doesn't know their carrier status, the grandchild has a one in four chance of developing the disease. This can be an emotionally charged issue, because revealing the tested individual's HD status also reveals whether or not their parent carries the gene. It is therefore crucial to discuss the testing option with family members who will be affected by the outcome.
Testing asymptomatic children under age 18 presents a similarly controversial issue. It is generally recommended that pre-symptomatic children not be tested until they can manage this decision for themselves. Parental consent must be given if an under-age child is tested. Usually a neurological examination is carried out before pre-symptomatic testing to confirm that an individual has not already developed the disease. And, pre-symptomatic testing cannot predict at what age symptoms will begin to occur.
If you've recently tested positive for Huntington's disease, you might feel overcome by a sense of hopelessness or despair. Perhaps your future suddenly feels uncertain, or you're worried about losing your sense of self. Know that there are steps you can take to continue to live a satisfying life.
Accept your emotions. During this grieving period, you might experience a range of emotions—anger, despair, shame. These emotions might come and go in waves. This is all completely normal. Don't feel the need to suppress emotions or ignore them. Instead, write them down in a journal or open up to a loved one.
Practice self-compassion. Develop a habit of challenging negative self-talk, such as “I'm a burden.” Replace those thoughts with more realistic or positive thoughts, like “I'm loved and have much to offer my friends and family.”
Educate yourself. Read about Huntington's disease, talk to other people who are living with it, and stay updated on research developments. Knowing more about your condition can be empowering. You'll have a better idea of what to expect and how to prepare.
Know when to rely on others. As the disease progresses, you'll need to increasingly rely on a caretaker. Identify tasks that are becoming harder for you to do yourself. It's also a good time to appoint a trusted person to handle future medical, legal, and financial decisions. Conversations like these aren't always easy, but you'll want to make sure your wishes are well communicated and respected.
[Read: Advance Health Care Directives and Living Wills]
Adapt. Making changes to your daily routine or surroundings can be helpful as your needs begin to change.
Manage stress. Chronic stress can speed up cognitive decline, so it's important to find ways to manage your stress levels. Breathing exercises, music therapy, pet therapy, and mindfulness meditation are all potential options. Experiment with different techniques and therapies until you find what works best for you.
Recognize and address depression. If you're experiencing consistent feelings of hopelessness, changes in sleep patterns and appetite, or a loss of interest in daily activities, you might have depression. It's a common emotional symptom of Huntington's disease. Note that depression is sometimes mistaken for bipolar disorder, which involves a cycle of depressive lows and euphoric, energetic highs.
[Read: Coping with Depression]
Eat a healthy diet. Foods known to nourish the brain, support memory, and build overall immunity are especially recommended. For example, following a Mediterranean diet, which is high in fruits and veggies and low in red meat, might offer cognitive benefits for people with Huntington's.
Difficulty swallowing is a common symptom of Huntington's disease. You might need to avoid foods that are particularly hard to swallow or take care to mash or mince them before eating.
Stay active. Over time, Huntington's disease will affect your mobility and balance, but aim to stay as active as possible. Regular exercise is good for the body and mind, and it can help reduce stress levels. Engage in physical activities you enjoy, whether they include yoga, daily walks, or gardening in your backyard. Use assistive devices, such as walking sticks, whenever necessary.
Keep your brain active. Embrace activities such as solving puzzles and learning new games. Staying social is another way to stimulate your brain. Stay in touch with friends and family. Better yet, invite them to play games with you. This is also a good way to cope with stressful times.
For additional tips, read our guide to Preventing Alzheimer’s Disease and Dementia—or Slowing its Progress.
In addition to the self-help steps listed above, seek professional treatment options as they become necessary, including physical, occupational, and/or speech therapy.
Medications are available to ease the symptoms of Huntington’s disease, including involuntary movements and mood swings. Your physician can help determine whether these might be appropriate for you.
Some people with Huntington's disease may also have calorie needs that are higher than average. This could be due to higher energy requirements. If you experience rapid weight loss or weight gain, a dietician can help you adjust your eating plan.
Caring for someone with Huntington's disease will involve helping them accomplish the self-help tips listed above. For example, you might assist them with weekly meal prep, guide them through exercise routines, and even take on legal and financial responsibilities. It's important to be patient, structured, and attentive.
[Read: Alzheimer’s and Dementia Care: Help for Family Caregivers]
Acting as a caretaker can change your perspective on life and give you a sense of purpose. However, it can also be physically and emotionally challenging. The following tips may help.
Acknowledge difficult emotions. You'll likely experience a wide range of intense emotions throughout the caretaking process. Some days you may feel angry, afraid, or even a sense of disbelief. Write it all down in a journal if you need a healthy outlet.
Remember to take time to acknowledge reasons to be grateful as well. This might help you keep things in perspective, even on days when negative emotions are weighing you down.
Maintain a healthy lifestyle. Just because you're taking care of someone else's health needs doesn't mean you should neglect your own. Habits such as getting enough sleep at night, exercising regularly, and eating nutritious meals will keep you energized and reduce stress.
Seek out support and resources. Being a caregiver entails a lot of responsibilities. You don't have to manage everything alone though.
Be mindful of your loved one's abilities. In the early stages of Huntington's disease, recognize that your loved one is still able to carry out many tasks independently. Be there for support, but don't feel the need to monitor and manage their every action. It's likely that they want to continue to enjoy their sense of independence. Allowing them to take care of certain tasks on their own will also lighten your load.
Although there is not yet a cure for Huntington's, the research being done is encouraging in terms of slowing the progression of the disease. The efforts to understand and reverse Huntington’s disease include the following:
|Current Research Efforts for Huntington's Disease|
Investigators in the field of neurobiology—which encompasses the anatomy, physiology, and biochemistry of the nervous system—continue to study the Huntington's gene with an eye toward understanding how it causes disease in the human body.
Neurologists, psychologists, psychiatrists, and other investigators are researching potential treatments that will then undergo clinical trials in humans. Drugs, such as pridopidine, are being tested on patients to determine if they're effective treatment options for specific symptoms.
Imaging studies focus on how the disease affects brain chemicals and changes structures in different regions of brain. Brain scans are used alongside blood and urine tests to identify biomarkers, which are biological changes that can predict the disease.
Research is being done with mice to mimic the human disease and test potential treatment modalities. Newer studies are focused on whether changes to the Huntington gene may affect severity and onset of the disease.
If you are living with Huntington's disease, consider participating in research studies to help the medical community expand its knowledge of the disease. Doing so may help to provide a sense of purpose as you'll be helping future generations find ways to better manage this currently incurable disease.
Call the Huntington's Disease Society of America helpline at 800-345-4372, download the A Caregiver Guide for HD Families, or Enroll in a Clinical Trial.
Find Huntington's Disease Association branches and support groups or call their helpline at 0151 331 5444.
Find support services and clinical trials at the Huntington Society of Canada or call 1-800-998-7398.
Find support services at Huntington's NSW ACT or call their helpline at (02) 9874 9777.
Find your National Organization for Huntington's disease.
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