At 38, Anna Grill was living her “best life.” She was enjoying a loving relationship with her husband, crushing it at work, and happily maintaining her responsibilities as PTA President at her daughters’ school. She was “Super Mom,” and loved every minute of it.
In the fall of 2007, friends and family noticed that Anna had developed a slight tremor in her pinky finger. She made appointments with various neurologists; one who proclaimed she had Parkinson’s Disease with very little prior testing, and another that was hesitant to give her that same diagnosis because of her age — she was too young.
Eventually, Anna was referred to a specialist at Johns Hopkins who ordered an F-Dopa scan (which was still in its beta-testing stage at the time). When the scan confirmed she had Parkinson’s Disease, she felt a strange combination of dread and relief.
“I was upset for a minute, but then I decided that I have to keep going and I still have a lot of time.” — Anna Grill
And keep going, she did. Anna’s mission in starting the Young Onset Parkinson’s Network is to establish a space with the support and resources that she didn’t have at the time of her diagnosis.
“People are really open about having cancer and other things like that, but there’s this aura of shame around Parkinson’s because it’s neurologic and you know it’s going to get worse. You don’t want sympathy, and you don’t want to be a burden, so it feels like there’s never really a good time to talk about it — and there’s certainly collateral damage from not talking about it,” she says.
The Young Onset Parkinson’s Network is a place where not only people who have been diagnosed with PD, but their care partners, friends, and family members who are also affected, can prevent that collateral damage by talking about it without shame or judgment.
With resources ranging from information about managing symptoms to balancing the events of a young life with an “old” disease, Anna hopes to show others affected by Young Onset Parkinson’s that they’re not alone, and encourage them to continue living life to the fullest.
