Finding partners in Parkinson’s

Look at this crowd of people at the Philly #partnersinparkinsons
Look at this crowd of people at the Philly #partnersinparkinsons
Taking a selfie with the panel for Building connections with community, family and friends!
Taking a selfie with the panel for Building connections with family, friends and community!

Recently, I had the absolute honor to be a panelist at the Partner’s in Parkinson’s event in Philadelphia.

What’s Partners in Parkinson’s? It’s a newish initiave from the Michael J. Fox Foundation and Abbvie to help Parkinson’s patients get the full benefit of a team when it comes to their journey. What’s that mean? Well, you can attend events to learn more about how you can help and about PD in general. Or you could find a new specialist. Or you could get one-on-one support from an advocate.
It’s a really cool tool that I’ve personally be able to use to get someone help finding a doctor in New York from right here in York, Pa.

The Foundation asked me to come out to Philly to be the “adult child” of a person with Parkinson’s on a panel called “Building Connections with Family, Friends and Community.” The goal? To share my story and help these people find ways to get involved or get more information. Most of the people in attendance were either recently diagnosed or have recently decided to get involved.

We had a conference call to prep for the panel, but in the end, we were told to be ourselves (they know better!) and share our stories. Simple enough, right? Well, I got a little nervous on the way.

The panel was awesome for a few reasons. There were some awesome, inspiring people also on my panel and I think I was actually able to make a difference for a few people and that was cool.

Also on the panel were Gary and Bobbi Rafaloff. Bobbi is a 20-year breast cancer survivor, and Gary had to watch her and help her through it. She got involved in the breast cancer community and flourished there. When Gary was diagnosed with PD, he decided right away to follow in her footsteps. The fourth member was Lori Katz, who runs a support group and reaches out to a lot of people through her newsletter. It was amazing to hear their stories and be in their presence.

For me, the coolest part of the panel was watching people start to get involved. It was tough to speak to them balancing what I do with the family and Foundation, and how they should get started. By just showing up, they wanted to make that first step, but they weren’t sure how.

The biggest thing I tried to get across is that we’re all different and we can all use our passions and skills to do something or anything. Dad, Mom, Emily and I are all so different, and yet we all play important roles in Parkinson’s outreach and our own family journey. Emily isn’t me, and she’s not going to volunteer the way I do. And I’m not her. But everything and anything we do is important. I urged the attendees to find what made them happy. Find their passion and the way that they want to help.

Another thing that attendees wanted to ask me about in particular was how to get the younger generation involved. Again, I told them, not everyone is going to be me (nor would I wish that on them). But it starts with family. If a child grows up in a home where family members aren’t ashamed of Parkinson’s and want to be involved, then they’re more likely to become involved later on. When people attend fundraisers and events, they very rarely are coming because they think their donation is going to make the difference. They’re coming because they know someone who has the disease, or they support the person hosting it.

Other than just feeling like I made a difference for some of the attendees (especially the adult children of patients), two really awesome things happened.

First, I met a family from here in York. The husband/father has PD, and the family wants to get more information and to get involved. The daughter, Emily, said she saw me in the “Letters to Michael” video from the Foundation last year and knew I was from York, but she couldn’t find out how to contact me. They came into the session and there I was. We spoke after and I am going to help them host a fundraiser at their restaurant here in York County.

Also at the end of the first session, a friend of Lori’s who has PD came up to me and asked if he could give me a hug and thank me for my words. I, of course, said yes. A few minutes later, his wife came up to speak to me, and started crying. She wanted me to make sure that I knew what I was doing was special, and that I was a great person. A few hours later, she had already gone to our website and found Dad’s contact information so she could send him an email about how well the whole thing went, and how impressed she was.

At the end of the day, before I rushed home to see Mom, Dad and Emily (they had just arrived for teh weekend), I got the chance to listen in as one of my Team Fox family members Nancy Mulhearn shared her story on the closing panel. Nancy attended an event similar to this after her early-onset diagnosis years ago. She walked in and saw people far along in their disease and it scared her, so she turned around to leave. A Foundation member caught her and put her at a table with other people with early-onset and she said it changed her life.

Nancy encouraged the attendees to:

Take a moment and be sad. Grieve. But then get over and get going. We have work to do.

Nancy and her mother also sat in on my panel for support, and honestly, that is what this journey is about. All the love.

What's next? A CURE!
What’s next? A CURE!
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