Who Is the Future of Parkinson's Advocacy?

In 2018, I was given the opportunity to write for Health Union. Having previously blogged about my Parkinson’s experience for the previous (almost) 2 years, I felt honored to be considered to be a voice from the “trenches.” At the time, I was telling the tales of the accumulated history of what it meant to have Parkinson’s disease. Additionally, I was learning how to cope with this condition on a daily basis, and being able to show my experience to the world. I found myself having to step up to the plate to take my swing at DBS, my surgery was in September 2023.

While my body is going through the stages of the surgery (lead placement, recovery, battery insertion, recovery, programming, my new opportunity), I’ll be reflecting on the 7th anniversary of the day I was made aware of what was going down in Dan (Avalanche Day). For each of us, the moment our diagnosis is learned is a personal thing, but for those of us who write, our journey is a public metamorphosis.

It takes a lot to face Parkinson’s, which is why write about it. Sharing the fears and fights we have as our bodies serve as the battleground for a war for our being is a big decision and a big responsibility. I made a promise to the universe the day after my future became apparent. Ever since that morning in late September 2016, I’ve advocated for change. Now, I ask you to do the same.

Every one of us needs a face and a voice to relate to

Will you be the sage grandparent? The cool older sibling? The peer mentor? Can you be a voice to listen and just say, “I get it.” Everything begins somewhere. That journey is easier with a guide.

Each of us needs someone to let us know that these are the cards we’re dealt. We need to know how to play the game, know the tricks, learn a few good tips, and to feel appreciated/encouraged/ inspired. Even if it was possible for every person in this game to read us, we still wouldn’t be the unique person who can reach each face in the audience. Perhaps, you can flip that switch for someone.

It’s been a long time since I entered the game. During that time, I went through fears of aspiration pneumonia, narcoleptic sleep issues, medicinal changes, and the mental/physical/emotional changes I’ve felt along the way. Nevertheless, my writing now isn’t about history, rather years of understanding. For this, Parkinson’s needs voices that are experienced at all stages of the game.

We need Parkinson's voices that are unique

We need people from all backgrounds, ages, genders, nationalities, and writing styles. When you look at the articles you read, think about what appeals to you. If you don’t see that face, become that writer. If you have something to say, put fingers to keyboard or voice to text-to-speech device. Be that writer.

You may have read a lot about tremors, bradykinesia, dystonia, and dyskinesia, but we haven’t heard your unique take on it! Why not step up to the plate and share your history? There could be someone waiting for your exact take on the situation.

It takes courage to share our medical histories, tragedies, fears, losses, and thoughts, but you can do it! The strength you will gain from the commitment to fighting Parkinson’s goes a long way to changing you and changing the world. In short, if you’ve ever considered advocacy, why not?

Any advocacy is good advocacy

Maybe you’re a political change voice for legislative change. Perhaps you are a writer or public speaker. You might be a community resource that could help people at your work, church, or other institution. You don’t have to be involved in everything. Simply put, doing anything will do!

So what's holding you back? I hope nothing, future advocate!