If you spend enough time around me, there is a good chance you will see me looking down at a device, pushing buttons, changing something, putting it away and then pulling it back out again.
That device is my DBS remote.
It looks a little like an old cell phone from the 1980s or 1990s, and I carry it with me almost everywhere.
From the outside, what I am doing can look like distraction.
Sometimes it probably looks rude.
But often, I am not ignoring you.
I’m managing Parkinson’s.
What It Can Look Like From Across the Table
I have been sitting at Bible study with six men around a table while everybody is talking, and I am looking down at my remote and pushing buttons.
If you did not know what the remote was, you might reasonably think I was more interested in the device than the conversation.
That bothers me, especially one-on-one. I believe eye contact and giving somebody your attention are signs of respect.
So when Parkinson’s pulls part of my attention somewhere else, I am very aware of what that might look like.
I’m not more interested in the device than I am in you. I may be using the device because I’m trying to keep my body functioning well enough to continue talking with you.
Sometimes I Can Listen. Sometimes Parkinson’s Takes More
There are times when I can use the remote and still follow everything being said.
There are other times when managing Parkinson’s genuinely takes a large part of my attention.
If I am muddy, I may be changing settings, shifting in the chair, crossing and uncrossing my legs, moving because I am uncomfortable, putting the remote in my bag and then pulling it right back out.
That can continue through an entire two-hour meeting.
What I am trying to do is simple:
I’m trying to find the setting that will make me comfortable enough to put the remote away and simply be there.
Sometimes One Problem Trades Places With Another
DBS has helped me in important ways, but settings can involve tradeoffs.
In my experience, a setting that helps movement can sometimes make speech or dyskinesia worse.
I have been standing in a church foyer and realized I needed to change a setting before I started talking to somebody.
“Wait just a second. Before I talk to you, I’ve got to turn this down so you can understand my speech.”
That is a strange sentence until you live in a body where something like that makes complete sense.
And the adjustments I make are within the limits programmed for me by my DBS care team. I am not independently reprogramming the system.
Understanding Changes the Meaning
When people know what my remote is and why I use it, the interaction feels completely different.
Understanding doesn’t necessarily change what Parkinson’s makes me do. Understanding changes what you think I’m doing.
That applies to more than the remote.
Parkinson’s can affect facial expression too. I have joked about a T-shirt that says:
“I’m not angry. I have Parkinson’s.”
There is humor in that, but there is also truth.
Sometimes you can be looking directly at Parkinson’s and not realize that’s what you’re seeing.
Why I Sometimes Drive Myself
The same kind of management affects how I approach social events.
I once went to a church dinner in another town with a friend. When Parkinson’s told me I had reached my limit and needed to leave, I was still tied to somebody else’s schedule because I had ridden with him.
Experiences like that are one reason I often prefer to drive myself now when I can.
It is not because I do not want to ride with friends.
It gives me an exit option.
Sometimes independence isn’t about doing everything by myself. Sometimes it’s about knowing I can leave when Parkinson’s tells me I’m done.
And sometimes I decide not to go at all because I know how much management the event may require.
Trying to Get to 100%
I have accumulated a toolbox over the years—medication, DBS, newer treatments and all the little strategies I have learned along the way.
That toolbox can create another expectation in my mind: if I do not feel right, there must be something I can change to fix it.
I can become determined to get myself back to 100% ON.
Sometimes that leads to more adjusting, more analyzing and more frustration.
I am still learning that sometimes there is no perfect setting.
Sometimes it is just Parkinson’s.
What I Worry People Think
After a social situation, I sometimes replay it in my head.
I wish I could have listened better.
I hope they didn’t think I didn’t care.
I really wasn’t completely present tonight.
That is why I wanted to explain this.
Sometimes what looks like distraction is actually Parkinson’s management.
My lack of attention in a moment is not necessarily a measure of how much I value the people around me.
I’m not more interested in the device than I am in you.
I’m managing Parkinson’s so I can be here with you.
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