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Personal Connections and a Positive Outlook: Checking in with PPMI Control Participant Erika Forte

Erika Forte is a control participant in PPMI, the Foundation's landmark clinical study to identify biomarkers of Parkinson's disease progression. She enrolled in the study for her husband, Michael, who was diagnosed with PD in 1997. We featured her in the fall 2011 issue of our newsletter, Accelerating the Cure. Read the profile below or click here to check out the entire fall issue.


Erika Forte, one of the first control participants to sign up for PPMI, was featured in the fall 2010 issue of Accelerating the Cure. One year later, Nate Herpich checks back in with Erika to see how things are going.

Erika’s husband, Michael, was diagnosed with Parkinson’s disease (PD) in 1997 at age 43. In the years following his diagnosis, the Fortes were often told that Parkinson’s research was on the cusp of a breakthrough, in terms of diagnosis and treatment. Then, in 2006, Michael underwent deep brain stimulation (DBS), which has made a significant difference for him. Erika decided that she wanted to help to further research so that other people with Parkinson’s will have even better options for treatment.

“We’ve developed a close relationship with the doctors at the Institute for Neurodegenerative Disorders (IND) in New Haven,” Erika says. “The doctors there are also Michael’s doctors, and they have become special people to us.”

Many of the tests she takes for PPMI are familiar — she’s seen Michael undergo the same ones during his visits to IND. She finds the smell test fascinating, and admits that, at 57, the memory test is the most stressful for her.

The tight-knit community at IND has helped to make her participation in PPMI a positive one. The staff there, she said, has been very accommodating, working around her busy schedule as a principal at a school for students with serious social, emotional and behavioral issues. Next month, the group of PPMI participants at IND is getting together for Sunday brunch to share their experiences in the study.

Michael and Erika are doing well. This past summer, the couple celebrated their 35th wedding anniversary. Michael has adjusted to life after retirement, and is chairman of the board of directors at IND. For the Fortes, it’s about finding the right balance in their lives. “We’ve figured out the best way for us to do things,” said Erika. “We’re able to take a step back and really assess what’s important, instead of just going, going, going all the time.”

Recently, the IND staff gave Erika a signed copy of Michael J. Fox’s second book, Always Looking Up, to thank her for volunteering for PPMI. Fox’s attitude, she said, embodies her own, and that of her husband.

“Sure, there are struggles. There are things we can do, and things we can’t. But at the end of the day, we are luckier than most.”


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