Every Question Ever About Parkinson's
In today's world, people often fear to ask someone "different" a question. For many of us growing up (myself included), we had very little exposure to other cultures, religions, lifestyles, or abilities. Because of this, many people never truly learn to empathize unless they work at it. Sure, we learn world cultures in junior high. We take interpersonal relations in college. However, we seem to take a tour "through the zoo," as opposed to experiencing actual diversity (life is better experienced with people than in concept).
To make this easier for others, I interviewed myself (I can do this as I have the technology) with questions people might want to ask someone with Parkinson's, but were afraid to.
What's your best advice for people who are newly diagnosed?
What's it like to be disabled?
I don't know. I have a progressively-deteriorating neurological disorder. It affects how I do things. Merriam-Webster defines disability as "a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions."1 By this definition, I, a man in stage 2 of Parkinson's, have a disability (but it doesn't have me). I refuse to see myself as unable, though there are things I can no longer do.
How do others define "disabled"?
It's common to wonder about the difference in words. This isn't being politically correct. It's about being a person first, albeit a slower person. When some people think "disabled," they see the person as completely unable in all too many regards. This will not do. In my experience, I have had people saying nonsense like this, as many as any public speaker does about anything. It goes with the territory. Haters gonna hate. Dan's gonna live.
Does this bother you?
I get that some people feel "hateful" toward the PC aspect. I don't agree with them, but I see their angst toward euphemisms, especially when they lived their whole life feeling one way about disabilities and now they are forced to comprehend having one. That's some serious irony. It doesn't excuse it, but it's a hurdle to work through.
That said, the people who don't get the need to take back from a condition that has taken from us can vanish with the triceratops.
It also bothers me when people with disabilities think I'm bragging when I talk about staying active or happy. Sometimes they make comments that seem to wish I was doing worse (i.e. "you think you deserve applause because you can handle your symptoms FOR NOW.").
How does that make you feel?
It makes me feel that instead of having anyone be able to celebrate their victories, however big, small, or fleeting (my philosophy), some people would rather bring others down to their level of misery while almost demanding to hear people's worst times. It's important to share how symptoms "feel," but if we're not going to say, "If I had this to do over again, I'd recommend this to you," then it's just competing for this biggest injury.
There's a quote that is mis-attributed to Lincoln, which says, "Folks are usually about as happy as they make up their minds to be." This doesn't mean we can't be sad or angry at what we no longer can do, but it does mean we need a plan to adapt and cope. Imagine going up to PD Warrior Jimmy Choi and telling him to stop rubbing his American Ninja Warrior success in people's faces! Imagine telling Michael J. Fox not to be so optimistic! I'm brave about the oncoming bad stuff like falls, freezing, and lack of independence, but I'm not brave enough to tell my PD heroes that.
Do your tremors hurt?
No, but tremors can be embarrassing in certain job situations that lead to a disclaimer.
Are you afraid of dying?
I was going to die before I had Parkinson's, and I'm still going to die. A cure for Parkinson's won't change that, but it sure would be nice.
Have you watched the video of the guy using CBD oil?
Yes, and I've had it sent to me more times than I can count. I'm actually about to try it out in HEMP form, so I'll let you know.
What Parkinson's question do you hear most?
The question you just asked me about CBD oil. I think people feel that if I use medical marijuana or have it, they can come over and we'll listen to Bob Marley together while I share it with them.
What is your favorite Neil Diamond song?
If I'm in the car with my wife, it's "Sweet Caroline." If I'm by myself, it's definitely "Cherry, Cherry."
What causes Parkinson's?
A lot of really intelligent people are working on that. While there is no definite answer, I feel we're getting closer to knowing. I believe mine is hereditary since my great grandpa had it.
When will we know for sure what causes Parkinson's?
My prediction is this time next Tuesday.
What is your favorite Michael J. Fox work?
The first "Back to the Future" movie is still a lot of fun to watch.
What is the most difficult side effect you deal with?
I am only in stage 2, so my symptoms are less intense. However, Parkinson's face is awful. It affects my voice, my hearing, my smile, taste, smell, and eyes. The only thing worse is that PD makes my wife cry. I'm sorry. It is what it is. That said, if you could, give PD a stern talking to so my wife and I can travel longer.
What can't you do because of Parkinson's?
I can't dunk a basketball, but I couldn't do that before I had Parkinson's either.
What can you do because of Parkinson's?
I can interview myself and see life as being too important to waste time with negativity. It allows me to keep myself in check. In this, it makes me not want to be petty or mean. For this, it's all about survival perspective, but it's also about putting post-survival time into meaning. All of this has to be for something. Hence, I live, love, and write. What else is there?
Have you or a loved one ever tried speech therapy?