Pat “Pinky” Erickson calls herself a “doer.”
Dynamo is more like it.
So when Pat, 57, was diagnosed with Parkinson’s disease 12 years ago, she went into overdrive.
Determined not to let Parkinson’s define her, the mother of three and PTA president at first hid her diagnosis from friends. But as her condition progressed, hiding it became more difficult. Eventually Pat came to realize the wisdom of her husband’s insight: “If any good is going to come of this, I was going to have to start telling people.”
So on the night before a three-day charity walk, Pat shared her secret with her friend Marla. By morning the two had planned their first fundraiser – a vintage fashion show – and the seeds of Pinky’s Passion for a Parkinson’s Cure were planted. Since 2007 the not-for-profit has raised $235,000 for Parkinson’s research.
But Pat doesn’t just raise money for Parkinson’s, she’s put herself on the line in three trials to help researchers better understand the disease. The first study required a single blood draw. In the second she had to take a two-hour cognitive function test. She’ll take another test in a few years and researchers will compare results of the two.
The third study, which required five or six clinic visits, was the most difficult, she says, because she had to stop taking her medication for several hours so researchers could measure the effectiveness of an experimental rescue drug.
Pat takes half a dozen pills every 2.5 hours. Without the medication, her limbs stiffen. “I feel like the tin woodsman from the Wizard of Oz.”
Going without the medicine was “miserable.” At the clinic Pat had to blow into a spirometer over and over again to test her lung function. The test made her feel dizzy and sick.
“At one point I told my husband I didn’t want to do it anymore. I wanted to give up. He said, ‘OK, but think about why you’re doing this in the first place.’”
“When you have a chronic illness it’s hard not to let the illness take over your life,” she says. “This is my way of fighting back. I want to make a difference so that someone else doesn’t have to have this disease, so that we can find a medication.”
While Pat’s an advocate for clinical research, she wants people to understand what’s involved. Her advice to people considering trial participation?
“REWARD,” she says simply. REWARD is Pat’s acronym for:
– Read everything so you know what’s going on.
– Every study is not for everybody. Wait for the one that’s right for you.
– Wear comfortable clothing. You’ll feel more relaxed.
– Act as your own advocate or have someone with you to be your advocate. Speak up if you have a concern.
– Remember why you are doing this.
– Do keep a sense of humor.
That last bit of advice helps a lot in life as well, she notes. “If you can find something funny in a situation it will help you get through it.”
If you are a patient interested in sharing your clinical research experience, please contact us.