What you can do :
+ Learn about Parkinson ’ s Knowing about the disease and its symptoms may help you understand your and your loved one ’ s experiences . That may help you find ways to support your loved one and yourself . Ask your doctor and others in the community for credible resources . Consider joining a family support group or an online chat forum . In MJFF ’ s online Buddy Network , for example , you can meet others like you and get tips and information .
Learn more at Parkinsonsbuddynetwork . org .
+ Consider genetic testing and counseling Gene tests look for changes , or mutations , that cause disease or increase risk . Testing may be available through your doctor ’ s office , a research study , or a direct-to-consumer kit , offered by 23andMe , Invitae and other companies . Some tests check for only the most common PD gene changes , others for all currently known links . Cost varies depending on how testing is performed and how detailed it is .
A genetic test cannot tell whether you ’ ll get Parkinson ’ s . This is because having a genetic mutation does not guarantee disease . Most people with gene changes never develop PD . In fact , even with a mutation , the chance of getting disease is still much lower than the chance of not getting it . On the other hand , not having a mutation does not ensure you ’ ll always be Parkinson ’ s-free . This is because there may be not-yet-identified genetic links or other factors that contribute to disease .
If possible , it ’ s best to meet with a genetic counselor both before and after you get genetic testing . A genetic counselor can help you understand what genetic testing can and can ’ t tell you , what to consider before testing , and what results mean for you and your family . Research studies and direct-to-consumer products may include genetic counseling . If not , your doctor can recommend a genetic counselor , or you can search an online directory .
The National Society of Genetic Counselors maintains a database at findageneticcounselor . com .
Not every person who has a family member with PD needs or wants genetic testing . But many say knowing this information helps them make positive choices to support health , including participating in research .
+ Participate in research Many family members are pleased to learn that they can join Parkinson ’ s research . For many , research is a way to show support for a loved one and to take action in their own health journey . Marc Jaffe , for example , joined the Parkinson ’ s Progression Markers Initiative ( PPMI ) for his wife Karen who lives with PD . PPMI gathers data from people with and without Parkinson ’ s over time to learn about disease , find new tests and treatments , and , ultimately , prevent PD . Marc says , “ I wanted to provide more than emotional support and PPMI was a tangible way to do that .” He goes on , “ When you ’ re in research , you feel things moving and you see the finish line in the distance . It ’ s great to be part of the process pushing us closer .”
Family includes blood relatives as well as spouses and others who are considered family . The experiences and health data of loved ones can help researchers learn what genetic , environmental and lifestyle factors lead toward or away from Parkinson ’ s . And this information can point to ways to treat and prevent disease .
KEEP IN MIND
+ Parkinson ’ s can — but doesn ’ t always — run in families .
+ Having a family member with Parkinson ’ s increases risk but does not guarantee disease .
+ In most people , the cause of Parkinson ’ s is a combination of genetics , environment and aging .
+ People with a family history of Parkinson ’ s can help researchers prevent the disease .
PPMI now is enrolling family members of people who live or lived with Parkinson ’ s . Learn more and join at michaeljfox . org / ppmi-study .
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