For two years, Dave Rivera’s wife lived with what she was told was Parkinson’s. As it turns out, she was misdiagnosed. “We saw the doctor five times,” Dave told me, without him ever realizing he was treating her for the wrong condition. “It was an emotional rollercoaster.” By the time another doctor suggested she get a second opinion, she had been “taking medication that wasn’t working for her” for two years. “It had a terrible emotional impact on both of us,” Dave said.
What disturbed Dave the most during his wife’s time with Parkinson’s was the lack of support. “When someone gets a breast cancer diagnosis, for example,” he said, “there’s the oncologist and the nurse and the psychologist and the social worker. They focus a lot of attention to envelop the patient, to help them survive this. When we got my wife’s diagnosis, they simply said, ‘You’ve got Parkinson’s. Here are some pills. Make an appointment on your way out.’”
Dave is by nature a problem solver. A doer. So instead of leaving Parkinson’s (PD) behind when his wife was eventually diagnosed with Essential Tremor (ET), not PD, he leaned into the PD community. “I can’t fix it,” he thought, “but I can help make it better.”
Today, Dave, who’s nearly 80, facilitates three support groups for people impacted by Parkinson’s. The more he talked to the people in his groups, the more apparent it became that most people weren’t having effective conversations with their doctors about their medications and their symptoms. Realizing that they lacked the tools and language to understand their symptoms, he started explaining to his groups about OFF time. “I started advocating,” he said, “telling them: ‘You need to know when your medication is wearing off.’” Without that knowledge, how could they communicate meaningfully with their doctors? How could they have their needs addressed? So when he learned about MY PD-CARE, a tool developed to help people with Parkinson’s track their symptoms and facilitate meaningful conversations with their health care providers, he knew this is the tool they had been missing. “Sharing it,” he said, “was a no brainer.”
I asked Dave if becoming a MY PD-CARE Advocate was personal. “Had your wife had this tool,” I said, “do you think things would have been different?”
“Let me put it like this,” he responded. “My wife was seen five times by the same doctor [before she was properly diagnosed]. The average visit was 20 minutes, to be kind. Some were even shorter. That’s about an hour and a half.” He wondered: how could a doctor who was supposedly engaged with her not notice that her medications weren’t working? That she wasn’t responding at all to Parkinson’s treatments? That her symptoms didn’t quite fit the mold? Maybe if they’d been tracking her symptoms, tracking her response to medication—maybe if they had MY PD-CARE—she wouldn’t have wasted two years treating the wrong disease. He didn’t say it, but the implication was this: maybe she would have gotten back two years of good time. Two years where her tremors were addressed. Two years where she lived more fully.
But for Dave, his care and his outrage extend beyond the personal. What he’s fighting for is systemic change. As he put it, “We need to change the way people deal with this disease.”
Based on some solid data, Dave estimates that there are about 9,000 people with Parkinson’s in his local area in Lehigh Valley, PA. He consistently goes to local Parkinson’s events and hands out information about the MY PD-CARE tool, which is available both as an electronic resource and printable PDF. So far as an advocate, he has given out about 125 informational pamphlets. “That tells me that I’ve got about 8,900 people I’ve never reached. People who don’t even know that I exist, that this resource exists. Who don’t know there’s any help.” He went on, “I feel like I’m a drop of rain in a river.”
The key to changing the way people live with Parkinson’s is to fill that void. “To be really effective,” he said, “every movement disorder specialist should hand this tool to every newly diagnosed person and to their existing patients. If you’re waiting for them to come to you or to discover that you have this, you’re diminishing your ability to really change the conversation nationwide.” He went on, “Who’s reaching the gap? The gap is the goal.”
As we talked, I could sense Dave’s frustration, his good outrage—outrage he uses as fuel. “We have the opportunity to do something really, really good, to change the way people deal with this disease,” he said. When people have the tools to meaningfully address their disease with their providers, not only do they get the right diagnosis sooner, but their quality of life improves. In a degenerative disease without a cure, every good day matters.
When Dave came to this country in 1959, he was a 14 year old kid who didn’t speak English very well. Searching for jobs, he’d be told, “You can’t have this job; you don’t deserve this.” But he persevered, eventually working in management for newspapers most of his life. “Today, I’m not rich,” he said, “but I don’t lack for. In some ways, you could say my life is the American dream.” But his success didn’t happen by accident. For years, behind his desk hung a sign: “Nothing happens unless you try.”
Thinking about solving the void in Parkinson’s disease care, Dave can’t help but let his mind wander to his scrappy past, to the way he got here. “How can I get more people to pay attention? I’m almost 80,” he said. “Who’s going to carry the torch?”
Dave may, indeed, be only a drop in a river. But there is no river without each drop. He will carry on, hoping to join with others until a wave crests—and then another. Nothing happens unless we try.
