There Are People in My Life Who Have Never Seen My Tremor

When I think back to when tremor became noticeable for me, I believe it was around 2017.

I had already been living with Parkinson’s for several years. My earliest symptoms had mostly been on my left side. My left hand had given me trouble typing, and my left arm had stopped swinging normally when I walked. But over time, my Parkinson’s began affecting both sides of my body.

The tremor I remember from those earlier years seemed different from what I experience today. It felt faster—more like rapid trembling—and I especially remember it happening when I was nervous or worked up.

It might happen at work. It might happen while I was out to dinner with my family. Sometimes it was my hand. Sometimes it was my leg.

I would look at my hand and almost command it:

Stop.

Be still.

Sometimes it seemed like I could mentally suppress it for a little while. Other times I couldn’t. Even when I could get it under control temporarily, it might start again.

So I found other ways to hide it.

I would hold my hand down against a table. I would sit on my hands. Sometimes even that wasn’t enough. If I was nervous enough and the shaking was strong enough, I remember sitting on my hands and then feeling my arms begin to shake instead.

I didn’t understand everything that was happening. I just knew I wanted it to stop.

My Tremor Today

The tremor I experience now is usually different.

These days it is predominantly my right hand. It is rhythmic and fairly fast, and it often happens when my hand is at rest. Sometimes I can be standing there doing nothing with that hand and feel it bouncing and shaking beside me.

I don’t have to look at it to know it’s happening.

There isn’t a tingling sensation. There isn’t a buzzing feeling. It doesn’t hurt.

The shaking itself is the sensation.

Parkinson’s resting tremor is commonly rhythmic, often begins asymmetrically, and can worsen with stress or strong emotions. But I don’t know exactly what type of tremor every movement I experienced back in 2017 represented, and I don’t want to diagnose those earlier movements retrospectively.

I can only describe what they felt like to me.

Sometimes I Know Why It’s Happening. Sometimes I Don’t.

Anxiety can still bring my tremor out or make it more noticeable.

Other times it seems to appear out of nowhere.

And frequently, for me, tremor is a sign that I am becoming more OFF.

I’ve had opportunities to see what happens when I don’t immediately interrupt it. There have been evaluations when my doctors needed to examine me OFF Parkinson’s medication. During those medically supervised periods, I remember the tremor becoming essentially constant until medication, DBS, or another part of my treatment brought it back under control.

That’s very different from my normal daily routine because I usually do something about the tremor fairly quickly.

DBS has been particularly effective for my tremor. When I feel myself becoming OFF and my hand begins shaking, I can often make an adjustment within the patient settings my medical team has given me and nip the tremor.

For me, that’s one of the best things DBS has done.

DBS is an established treatment that can improve Parkinson’s tremor, although response varies from person to person. My experience isn’t a recommendation for anyone else to change their DBS settings. I’m describing what happens with the patient controls and ranges my own medical team has provided for me.

When My Hand Is Shaking, I Can’t Just Tell It to Stop

This is probably the biggest thing I wish someone without Parkinson’s understood about my tremor:

I’m not doing it.

It’s an involuntary movement.

I can’t simply decide that I don’t want my hand to shake anymore and make it obey me.

And when the tremor gets strong enough, that hand can become basically inoperable for me.

If I’m holding my phone in my right hand and trying to operate it with my left, the phone may be moving so much that I can drop it. A cup of coffee becomes a problem. Pouring a drink can become a problem. Even something as ordinary as operating a TV remote can become difficult.

That is one reason I hesitate to call tremor “harmless,” even though my tremor itself has not been painful or physically harmful to me.

For me, the bigger problem is what I temporarily cannot do with that hand while it’s happening.

I’ve Gotten Very Good at Making Sure You Don’t See It

There is another side of tremor that has less to do with movement and more to do with living around other people.

Tremor is visible.

I’ve never had somebody make a rude comment about mine. Nobody has told me to calm down or asked me why I can’t just hold my hand still.

But I’ve seen people notice it.

You can be talking to somebody and see their eyes briefly move from your face down toward your shaking hand. I’ve noticed people glance at it as they walk past me.

I don’t blame them.

I’d probably do the same thing. If I saw someone’s hand moving unusually, I would probably nonchalantly look over to see what was happening too. That’s human curiosity.

But I’ve also spent years learning how to keep people from seeing my tremor.

If I couldn’t stop it, I might hold my hand down. Sit on it. And there have been times when, if I couldn’t hide or control what my body was doing, I would rather leave the situation.

Sometimes I wasn’t leaving because the tremor prevented me from being there.

I was leaving because I couldn’t make the tremor stop while I was there.

Today, DBS has changed that considerably for me. I can be sitting with the men in my Bible study, feel my tremor starting as I’m becoming OFF, make an adjustment within my prescribed DBS settings, and nip it before anyone ever realizes what was happening.

Which has created a strange contradiction in my life with Parkinson’s.

There are people in my life who have never seen my tremor.

That doesn’t mean it isn’t there.

It means I’ve gotten very good at making sure they don’t see it.

Hiding Parkinson’s Has a Cost

I’ve realized something about myself through talking about this.

I’ve hidden a lot of my Parkinson’s symptoms from people.

Then sometimes I get frustrated because people don’t understand how bad Parkinson’s can be.

But how could they?

I’ve hidden stuff from a lot of people, so they don’t know how bad it is—but then I get upset because they don’t know how bad it is.

I don’t think I hide my tremor because I’m ashamed of it.

The guys in my Bible study could see my hand shaking and I wouldn’t be embarrassed for them to see it. Yet my instinct is still to stop it as quickly as possible.

I’m not even sure why anymore.

I’ve simply spent years learning that when a symptom appears and I have a way to control it or conceal it, I do.

Tremor starts.

I deal with it.

Life continues.

I don’t see myself intentionally sitting there someday and allowing my hand to shake just so somebody else can understand Parkinson’s better.

But I am beginning to recognize the consequence of hiding it so successfully:

People can only understand the Parkinson’s I allow them to see.

And Parkinson’s can be doing much more than what someone sees from across the room.

If Your Tremor Is New

If I were sitting across from somebody with Parkinson’s who had just started experiencing tremor and was frightened by it, I would tell them what has been true for me.

My tremor itself hasn’t hurt me.

It can be annoying. It can be embarrassing. And when it’s strong, it can severely limit what I can do with that hand.

But the shaking itself hasn’t been painful.

I would also tell them not to judge their entire Parkinson’s future by my experience—or anybody else’s. Parkinson’s varies tremendously from one person to another.

If You’re Helping Someone Through It

If you’re the spouse, family member, friend, or caregiver, you don’t necessarily have to make a big deal about the shaking.

Just pay attention to what the person might need while the storm is happening.

If my hand is shaking badly, maybe I can’t pour the drink.

Maybe I can’t use my phone.

Maybe I can’t work the remote.

Sometimes helping someone with Parkinson’s isn’t about doing something dramatic.

Sometimes it’s simply recognizing that an ordinary task has suddenly become difficult and quietly helping with it.

That’s what I would want.

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Experience, Not Expertise

This is my experience with tremor, not a description of what tremor will be like for everyone with Parkinson’s. Parkinson’s tremor varies considerably among individuals, and tremor can have causes other than Parkinson’s.

For broader medical information about Parkinson’s tremor, visit the Parkinson’s Foundation tremor guide or the American Parkinson Disease Association tremor guide.