Speak Up for Yourself: A Website for Your Voice

“How are you? No, for once, I’m not here to tell you how I am. How are you?”

I talk about myself a lot, but that tends to be the kind of writer I am. I feel genuine behind the keyboard in laying out my experience for you, so you’ll know what one person, somewhere in Pennsylvania’s Amish Country experiences with his Parkinson’s, but that’s just me and my experience. What about yours? As Rerun used to say, “What’s happening?!!”

You’re a good person. You matter. You shouldn’t have to be at a Parkinson’s website, but here you are, so we’re here to help, but we can only generalize unless you ask.

So by all means ask!

Granted, we’re not medical professionals. I can help you write an MLA or APA essay, plan out your college experience, or tell you my opinions on the Oxford Comma (it matters), but I’m not a doctor. I don't perform DBS or perform medical evaluations. Thus, I can’t prescribe you medicine, but I can ask about you. I can’t diagnose due to legal issues, and even if I was, I'd need to see you in person.

However, I care. I empathize with your plight, and I really do want you to have a better day. I'll also express to you how things work for me, and I'll listen and direct you to others. Sometimes, it's all about finding the pathway to true help.

So tell me, “How the heck have you been?”

I may not know your symptoms from firsthand experience, but we’re joined by an issue with our substantia nigras, so guess what? I care. I’m not a used car salesman working on commission for how many sad faces I click on a post, but even in the simple gesture of noticing how you aren’t feeling OK, something in me wants it to be better for you and to use my voice to ask. I know that’s not the same as curing your Parkinson’s, but we’re in this together. I don’t want to know that other people are out there suffering in a way I have or I will. And, to me, that is what it's about. This whole thing has to mean something altruistically, and that's it. It's about both of us finding our voice.

Simply put, that’s why I educate and advocate. It’s also why I want to let you know that I’m part of a great big community that is pulling for you to have better days.

Even though I probably don't know offline you...

Sometimes you have a picture up with a real name, or just a name. Many times, I don’t even get a “Maria.” Sometimes, it’s just a clever name from something that changed your life, like SOCCERDAD. In my case, I’m a Dan, but I decided to be a teacher while driving through Eureka, Nevada, and in 1998, I became Eurekadan online. On the trail, I’m Shakes the Hiker. Your “anonymous” tag might be your college or some obscure musician from a now defunct band. It could just be that you’re the 918th Jill who signed up on an e-mail service for an account at XYZ Mail.

It doesn’t matter, but you matter, so if you’re feeling down, don’t hesitate to speak your voice for thoughts and prayers or positive karma or the universe to provide you with an option. There are no trolls on our site, so even with short lines like “feel better soon” or “hope you get well,” you’re receiving a lifeline in black and white. We’ll be sending our wishes your way.

The asterisk

Yeah, I get it. Thoughts and prayers (for some) don’t work like Rasagiline and Amantadine, but they don’t hurt either. If one person’s emoji or voice is enough to make someone in a bad way feel better, then that’s something. What's more, that’s not the same as trafficking in false hope. Telling someone that they will be cured completely if they X is not the same as telling someone that they matter to you. Positive thought can transcend tough times, no matter your spiritual belief. Nevertheless, when it's phrased as an absolute certainty for believers and the cure isn’t in by date X, then what happens? We don’t need to read Man’s Search for Meaning (page 97) to get resignation in the face of being rejected by an ominous force that didn’t make wishes come true.

Solidarity, helpfulness, and empathy are key

“You’re my fellow Parkie, so tell me what do you need that I can realistically give to you?” Sorry, a big check, new house, all-expense paid vacation, and / or date with someone famous in Hollywood isn’t in the cards. But I would if I could.

Nevertheless, being a friendly message can be. Some people may be more comfortable talking to Internet people than up-close family and friends. Some of you may already know one another from social groups. In the end, your comfort and boundaries allow you to make connections. Of my Facebook connections, I’d say 60% of the people I never met or met so quickly, I couldn’t recognize them if they were here in front of me.

But guess what? I still care. Something inside of me wants to know that they’re doing OK out there. Depression and solitude, as well as the isolation and hopelessness with them, are not anyone’s favorite. So use your voice if you’re feeling cut off, reach out for a hand. It's a sign of being human, not weakness.

More importantly, though, than the random anonymous / spread out Internet world, there are local helplines and medical specialists to assist you. They can direct you to local resources that have the training and ability. If necessary, let us lead you to them.

You don’t deserve any of those feelings. As I often tell students when they’re in the process of learning to navigate, I may not be able to help you, but I or someone I know does know. Let my colleagues and me help you find daylight in the darkness!

The final answer

So tell me, friend, “How are you?”