Every time I interview someone for the Michael J. Fox Foundation blog, I find myself surprised that each time I’m talking to someone who is so passionate about life and the cause. I think I could say on behalf of my whole family that being involved in research, fundraising and the amazing Parkinson’s community is a daily blessing.
It’s something that really hit home for me in a recent interview with Kim and Libbe Erickson. Kim was diagnosed with Parkinson’s in 2010, and once he signed up for Fox Trial Finder and participated in a trial, he and his wife were approached by the Parkinson’s Disease Foundation to be Parkinson’s Advocates in Research (PAIR). They’ve been in seven trials since then and go to groups and events to spread the word about trials and research.
During the interview Libbe told me something that rang so true.
“We feel like being involved in research or promoting research… it’s like being able to harvest 10% of the placebo effect. It really can add some measure in your life. We don’t feel as much as a victim, i don’t feel like it changes your life as negatively as it could.”
They went on about the wonderful people they’ve met and their hope that they can be role models for the future. Libbe admitted their dedication wasn’t purely altruistic because of the personal gain they get.
“I would imagine if you’d survey people involved in research,” she told me, “I would bet their assessment of their quality of life is higher than the overall person simply living with the disease.”
How true. Seriously.
It got me thinking. In our quest to raise money and find a cure, you reach out to the people already fighting your fight. And you reach out to your friends, co-workers and family — hoping they’d contribute because it’s so important to you.
But what can we do to reach that population of people with Parkinson’s or their caregivers who aren’t in Team Fox. They don’t go to support groups. They aren’t involved in research. And they don’t have that zest for life and passion to fight that I’ve seen in so many people along the way.
How do you pass that on? How do you find them? I guess you try through word of mouth. Through advertising your support groups, your events. And by passing the word on to others that if they know someone battling PD that they are not alone. They don’t have to stay inside and go through it alone.
Libbe, Kim and I spoke about this a little. They said in their support groups, they just keep trying to educate people about trials. It’s not about being a guinea pig. It’s safe and it’s worth the risk. And hopefully we’ll start breaking those people down. Everyone thinks there’s a group of people out there in trials finding the cure for them. But if we all think that way, no one is really doing it.
Libbe also summed up another thought I have sometimes.
“I worry sometimes is there something weird about spending so much time? Should we get on with out lives? But it’s infectious, upbeat people. You come back from all events energized and feeling darn good about life.”
Whether we’re fighting Parkinson’s or not, I think it should be our goal to feel “pretty darn good about life.” Right? And do our best to pass that feeling on to people who might need the boost.