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My Research Journey: “Hope begets more hope”

Hyam and Tom Kramer

Hyam (left) and his husband Tom (right) on vacation in Australia.

It was fall 2015 when Hyam Kramer started noticing tremors in his legs and difficulty walking. At first, he didn’t think anything of it.   

But when these symptoms didn’t go away after a few months, Hyam decided to visit his doctor, who referred him to a neurologist. After running a battery of tests, the neurologist said, “You have Parkinson’s.” 

Hyam, 62, a retired fundraising and finance professional, was expecting to work well into his 60s. Parkinson’s put him on a bit of a different path. 

“I wasn’t devastated, but I was frightened,” says Hyam, as he reflects on his diagnosis. 

Hyam and his husband, Tom, 68, live in Boston, Massachusetts. Tom also recalls feeling frightened and concerned at the time. Hyam’s mother lived with Parkinson’s disease (PD), so Hyam and Tom both saw first-hand what she went through.  

Everyone processes a Parkinson’s diagnosis a bit differently. It’s normal to feel overwhelmed and to not know your next step. (Download our guide for the recently diagnosed and find other resources on our website.)  

A recommendation from Hyam’s neurologist inspired him to take action and join the premier Parkinson’s research study. “He said, ‘Hyam, this is something big, and you might be very interested in it.’”  

The Parkinson’s Progression Markers Initiative (PPMI) is The Michael J. Fox Foundation’s landmark study on a mission to stop Parkinson’s disease. The study follows participants over time to learn more about how disease starts and changes. Hyam joined PPMI shortly after diagnosis and remains in the study today. Twice a year, he visits a medical center for study visits, completing various assessments and contributing blood and other biological samples. (He also participated in a portion of the study that asked him to wear a watch to track symptoms.) This data helps researchers better understand Parkinson’s and could lead to new tests and treatments. Few think about participating in research after a diagnosis, but it may be one of the most important things you can do. (Learn more.)  

“It’s especially rewarding to be part of PPMI because it’s an opportunity to make history,” says Hyam. 

Hyam has recently noticed changes that make daily life with Parkinson’s more difficult. But exercising regularly and taking medications help make it more manageable.  

“There are many things out of his control with this disease,” says Tom. “One of the things in his control is the ability to move research forward.” 

Hyam is hopeful about new treatments on the horizon and thanks The Michael J. Fox Foundation for providing him with hope. “Hope begets more hope, better behavior and a more constructive outlook. I want to be part of that,” says Hyam. 

PPMI is urgently recruiting people diagnosed with Parkinson’s in the past two years and not yet taking PD medication. Call 877-525-PPMI or email to learn more and get started today. 

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