I started this blog two months ago, before I had a diagnosis. Doctors had told me for years I had all the signs of Essential Tremor. Parkinson’s disease never registered.

A lot has changed in 60 days. New meds. New language (Dx Parkinson’s). Exercise. Resuming grad school.

Most helpful in this journey? Resources from the Michael J. Fox Foundation for Parkinson’s Research and various social media platforms. I have found encouragement and community in Facebook support groups for people with Young Onset Parkinson’s Disease and Twitter feeds. I have discovered new hashtags (#yopd). When I was in my darkest hour, and had no idea how to start, a blinking curser took me to Reddit. In a moment, I found my clan at r/parkinsons.

Is social media relevant?

In a simple word, yes. On a daily basis, I discover the latest research, find opportunities to join studies or speak with people about the first time they spilled a cup of coffee due to tremors. This level of engagement is astounding, and unthinkable just 10 years ago.

The ways social media connects us all seems impossible to comprehend. But the personal ways this complicated web touches me makes all the difference.

Professional presence

I work at the University of Michigan, and would liken its social media approach to that presented in Kietzmann’s “honeycomb.” The main change would be to morph the central block “identity” with “brand” and “empowerment.”

The U-M recently introduced Social Integrity, a new website designed to promote digital citizenship and offer resources to help members of the campus community and general public protect their privacy, spot fake news and learn how best to deal with bad behavior on social sites.

“Social Integrity is about educating social media users to create a more productive online space and empowering them to use the tools for the betterment of society,” said Nikki Sunstrum, U-M director of social media.

Genetic connections

The Michael J. Fox Foundation for Parkinson’s Research relies on a strong reputation, combined with active outreach through social media.

I found out about a Fox-funded study through a Facebook group. For approved participants, the Fox Insight Genetic Sub-study pays for a 23andMe test to determine genetic markers for Parkinson’s disease. After reading personal testimonials of participants on Facebook, I applied to join the study and was accepted. I feel the Michael J. Fox Foundation has a strong combined identity and brand, which increased my trust in the organization. Without this social media tip-off, I’m not so sure I would have found out about this opportunity.

Social media has flattened the landscape to allow for conversations that never would have happened before. These sort of connections drive the platforms. I’ve met people who take two dozen pills to keep symptoms at bay, and others who have opted for Deep Brain Stimulation. Currently, I am at four doses of Sinemet each day. I keep the medicine in a small pillbox sporting an image of a cowgirl riding a chicken with the words: “I love it when my pills kick in!”

And I do.

Jill G. is a professional editrix and chicken wrangler. Dx with Parkinson’s in June 2018.