My Family and the Summit - PMD Alliance

I have said it many times, but it’s worth saying again: I have never met a person with Parkinson’s that I didn’t like. When a group of motivated individuals from the Parkinson’s Community gather, the atmosphere is electric.

 The ALL IN SUMMIT event hosted by the PMD Alliance brought us together – we were “ALL IN,” and the feeling was contagious. The keynote speakers motivated an entire ballroom to participate. At one point, the ballroom stood, pointing at each other, saying, “I need YOU and YOU.” At that moment, we all became part of something bigger than ourselves – together, we would make a difference and impact our communities. 

The thought of leading a bucket drumming demonstration to this group was intimidating. However, it was an opportunity to share how music and rhythm can be a tool to manage our symptoms. Intimidated or not – I was doing this demonstration. 

Early Monday morning, my son Ryan called me and sensed my need for moral support. He was local to the area and offered to be my music assistant.  

The day went by quickly; it was time for the demo, and the room was EMPTY. However, my greatest fear was averted. Participants arrived with five minutes to spare. Ryan set up the music, and the drummers were singing and drumming to the classic tune “We Will Rock You” by Queen. We threw in some Sinatra and Elvis, and the ballroom was drumming and dancing. 

Ryan accepted an invitation to stay for dinner with a keynote speaker, Larry Gifford, the founder of PD Avengers. Admittedly, I was nervous. As a mom, I went to great lengths to keep my PD from overwhelming my boys. I knew little about Larry, what to expect from his presentation or what Ryan would think of it.  

At least, not until I got home and my husband said, “Ryan is buying a book written by the speaker from the dinner.” I went from mom to journalist and asked Ryan and Mike to share their perspective of the event. 

Mike’s Perspective

Mike described the event as a “rubber meets the road” experience for me. The networking expanded my reach to help others with Parkinson’s. It was a learning opportunity to broaden my knowledge and build confidence in speaking and presenting in front of large groups. 

As for Ryan, Mike was a bit surprised that Ryan attended but thinks he is glad he did and had some great takeaways. He felt Ryan’s Parkinson’s knowledge was formed by me, but hearing others clarified what he had already learned and provided additional information that he may not have considered.

Ryan’s Perspective

While Ryan learned and saw Parkinson’s symptoms that I never mentioned, he also saw the Parkinson’s community at its best. Unlike many conferences he has attended where people hope to sit and listen to lectures, we surprised him with our level of participation and engagement. We were not a group interested in sitting idly by as the Summit unfolded.   

I am glad Ryan attended, and I hope he discovered one thing… helping others is my passion, and I need to continue to pursue it in my work and as a PMD Alliance Ambassador. 

Lori was diagnosed with YOPD eight years ago. Now, she is a published author with Parkinson’s News Today. Her column, “Life, Lemons & Lemonade,” is a collection of essays written as a person with Parkison’s. She is also a PMD Alliance Ambassador. Learn more about our ambassador program here.

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