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With Parkinson ’ s in My Genes , I Have to Take Action

Julie Hirsch , age 54 , loan officer , Mercer Island , Washington
Parkinson ’ s in the family
For the last few years , Parkinson ’ s disease ( PD ) has been a big part of my life . My father had PD and his sister — my aunt , who is now 86 — has it too . So did my grandfather on my mother ’ s side . There ’ s a strong family history .
By pure coincidence , I happened to learn I carry a GBA gene change when I had tests done to check out some health issues . Soon after , I learned my gene change is linked to Parkinson ’ s . Knowing that , I had to take action .
A proactive approach
I went to see my dad ’ s neurologist , a PD specialist , and he told me it ’ s possible that I might develop Parkinson ’ s at some point in my life . I tend to be an anxious person to begin with , so that was challenging to hear . But now that I know , I ’ m taking every step possible to plan and take care of myself . I work out a lot , walking at least three miles five or six times a week , biking at least 14 miles a few times a week , and skiing one day a week in the winter . Exercising helps me in relieving anxiety .
Staying up on the latest research
I ’ m part of MJFF ’ s Parkinson ’ s Progression Markers Initiative ( PPMI ) study and will continue it over my lifetime . Even if it doesn ’ t help me , it might help someone else .
You don ’ t know what is ahead of you
Everyone ’ s journey with Parkinson ’ s is different ; there ’ s no way to know what ’ s ahead of you . I know there are going to be some great advances within the next five to seven years . I hold onto that thought and meanwhile , I just keep living .
KEEP IN MIND
+ Some changes in genes ( mutations ) increase the relative risk of getting Parkinson ’ s .
+ Certain groups , such as Ashkenazi Jews , are more likely to carry certain Parkinson ’ s mutations .
+ Genetic tests can tell you something about your risk , but not whether you have or will get Parkinson ’ s . Knowing about your genes can help you take action in your health journey .
+ People with Parkinson ’ s genetic links can help researchers develop new treatments and prevent the disease .
Better Brain Health | Section 02 — Understanding and Living with Risk Factors 35