Family members may have various questions surrounding Parkinson’s disease including: how to best help people affected in the family, how Parkinson’s arises in a family and whether they are at risk, and the best preventative measures.
What can I do to help?
Answers to the question: “What can I do?” if you have a parent or relative affected, may vary from person to person. It may be helpful to talk to someone like a friend or counselor about your questions and concerns. Some people find that getting involved in community efforts can help them feel better. For more ideas you can visit the Parkinson’s Foundation web page. If you are a caregiver and need more information, visit the caregivers page on the Parkinson's Foundation.
What is my risk of developing Parkinson's disease?
If you have questions about the risk of developing the disease, a genetic counselor can be a good resource for more information. Genetic counselors are trained professionals who help people understand the chances of disease occurring in their families such as Parkinson’s, explore genetic testing options if interested, and aid in understanding and adapting to test information if testing is pursued. Whether or not to pursue genetic testing is a personal decision that should be carefully considered. To locate a genetic counselor in a certain area for additional discussion, the NSGC directory can be utilized.
What should I know about genetic testing?
Family members without Parkinson’s disease who choose to pursue genetic testing may learn they have an increased risk for the disease in their lifetime. While there are laws (such as the Genetic Information Nondiscrimination Act of 2008 – also called GINA) that protect them against genetic discrimination relating to employment and health care, these laws do not protect individuals against discrimination relating to life insurance or long-term care insurance. For more information about protection at the federal level, please visit ginahelp.org
What can I do to prevent Parkinson's disease?
Relatives at risk of developing Parkinson’s disease may wonder what can be done to help prevent the disorder. It is now known that the disease starts decades before it is clinically recognized (known as prodromal Parkinson’s). Reduced smell may be an early sign of Parkinson’s as well as a particular type of sleep disorder known as REM sleep behavior disorder. So far, environmental factors associated with a lower risk of developing Parkinson’s include tobacco and caffeine use, use of nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, and physical activity (exercise). In other words, these activities may help protect against developing the disease in some people. Moderate to more vigorous aerobic exercise is likely the most important tool to date in the prevention toolbox and can be beneficial for other adult chronic diseases (Kalia & Lang 2015, Ascherio & Schwarzschild 2016).
Finally, you may have an interest in participating in research efforts. To find out more, click on How to Get Involved.