Monica Decorie

Member for

2 years 11 months

Everybody's story is different.  I am going to give you the condensed version of mine.

Finding out I had Parkinson's disease (PD) was a lengthy process. I was a runner and loved to run. Every day since 1997, I ran seven miles a day! The trails in our area were beautiful. I often ran straight after work, bringing my running clothes with me.

I worked at a mechanic shop and after my runs I never thought the mechanics could smell me, especially considering I’m surrounded by oil and cars. Just blocks from the shop on my run I was always able to smell a lilac bush. But over time I was no longer able to smell it. I eventually had to force the lilacs up my nose in order to smell them. I didn’t think much of it at the time. By the time I got to work I forgot all about it. 

Later that year, I had to stop running because I kept falling. My customers were getting concerned, constantly asking if I was ok. I'd respond with "Yeah, I'm just getting old and fat." 

Months later we took a vacation to the Grand Canyon and our travel companions wanted to take some trails down into the canyon. Everyone who knows me will tell you that nothing would stop me from joining. But this time I looked at the group and said, "I can't do it. I can't even lift my feet.” 

I was shuffling, stooped over. I finally realized I needed to see a doctor. On my first visit he looked at me and said, “Stage 4 Parkinson's." 

So, 12 years later and 70 pounds heavier, I decided once and for all — this disease will NOT conquer me, I will conquer it! 

Four years ago, I had deep brain stimulation (DBS) and went from taking pills every hour to every five hours. Four months after that, I danced at my daughter’s wedding! 

There no stopping me now.

In 2019, I plan to walk from San Diego, CA, to Boston, MA, and make sure that every single person I meet knows what Parkinson's is and how poorly it’s funded. 


mail icon

Subscribe here to get the latest news on treatments, research and other updates.