For most people, walking is automatic.
You finish breakfast at a restaurant, stand up, walk to the register, pay, turn around and walk out.
You don’t think about your first step.
You certainly don’t think about your second one.
I do.
Freezing of gait has taken something that should happen automatically and sometimes turned it into something I have to consciously manage one step at a time.
People often describe freezing of gait as feeling like your feet are stuck or glued to the floor. That’s accurate enough, but it doesn’t completely describe what it feels like to me.
For me, it feels like my brain is telling my legs exactly what to do—and my legs aren’t listening.
I Had Felt Something Like This Before
There’s something about freezing that reminds me of one of the earliest signs I had of Parkinson’s.
Before I was diagnosed, I began having trouble typing with my left hand. It started with my pinky.
I had typed for years. I didn’t consciously think, Now move my pinky over and hit this key. Typing just happened.
Then suddenly it didn’t.
I could be typing along until it was my left pinky’s turn to hit a key. My brain knew what needed to happen. I could look directly at my finger and almost mentally tell it:
Hit the key.
And it just wouldn’t do it.
Sometimes I could eventually get it to slowly move where I wanted it to go. But I remember the strange feeling of knowing exactly what I wanted my body to do and not being able to make it happen.
Years later, freezing of gait gave me a similar feeling.
Lift your leg.
Take the step.
Go.
And nothing.
Medically, freezing of gait is described as a temporary inability to make an effective step despite intending to walk. That description comes pretty close to what it feels like from inside my body.
Tight Spaces Can Change Everything
I first remember freezing becoming an issue for me around 2020. It wasn’t something I dealt with during my earliest years with Parkinson’s.
At first it wasn’t necessarily mild when it happened. It was mild in frequency.
It just didn’t happen very often.
Over time, it happened more and more.
I’ve especially experienced problems in tight spaces, doorways, when turning and in crowds. Those are also recognized situations where freezing commonly occurs.
When I lived in an RV, the narrow walkways could be difficult.
Crowds can be worse.
I remember being at a family Thanksgiving dinner a few years ago. Everyone was in the kitchen getting their food, and someone asked why I wasn’t getting mine.
I was waiting.
There were simply too many people in the kitchen.
I knew that if I walked into that tight space with people moving around me, there was a good chance I would freeze. So I waited until everyone else finished and the kitchen cleared out.
That’s something I’ve learned about freezing:
Sometimes freezing of gait stops me from walking. Other times, the possibility of freezing changes where—or when—I even try to walk.
Going to Starbucks for a Cup of Coffee
One experience I documented happened at Starbucks.
I wasn’t doing anything adventurous.
I went there to have a cup of coffee, sit at a table with my iPad, maybe do a little work and relax.
It was fairly busy.
I placed my order and found a seat. Then I looked over toward the counter where they were putting completed drinks.
People were gathered around it.
Employees kept calling names.
“Jeff.”
“John.”
“Stephanie.”
And with every name they called, I became more anxious.
Because eventually they were going to call mine.
Normally, when you’ve ordered coffee, you want them to call your name.
I was sitting there hoping they wouldn’t call mine.
I could already picture what I was going to have to do.
Stand up from my table.
Get my legs moving.
Walk through the people gathered around the counter.
Get my drink.
Turn around.
Get moving again.
Walk back through the crowd.
Every one of those transitions represented another opportunity for my legs to freeze.
I became so concerned about it that I actually practiced.
Before my drink was ready, I got up, walked over toward the napkins, grabbed one and threw it away.
I was testing myself.
Can I do this? Are my legs going to cooperate?
At one point, I considered simply leaving without the drink.
Then I started worrying that the person who had taken my order might recognize me.
What if they see me leaving and say, “Landon, here’s your drink”?
Something as ordinary as picking up a cup of coffee had turned into this entire calculation.
Eventually, I went for it.
I remember using little stutter steps to get myself moving toward the counter. I got my drink.
Then I had to turn and get moving again.
I put my hand against the counter and pushed away from it, almost like pushing a boat away from a dock, trying to create enough momentum to get myself headed back toward my table.
I stumbled some.
But I made it.
I went to Starbucks to relax over a cup of coffee.
Before it was over, I had rehearsed walking to the counter, considered abandoning a drink I’d already paid for, and physically pushed myself away from the counter just to get my legs moving.
That’s something freezing of gait can do that you can’t see by simply watching my feet.
My Toolbox for Getting Unstuck
Over the years, I’ve accumulated a toolbox.
I didn’t invent all of these ideas. Some I’ve heard from doctors or other people. Some I’ve picked up along the way. Some I’ve adapted for myself.
And none of them works every time.
One of my favorites is a cadence I say in my head:
Hut, 2, 3, 4. Hut, 2, 3, 4.
The “hut” is my cue to take that first step.
I’ve also used a metronome. I even set up shortcuts on my phone so I could start a metronome at a particular tempo.
Music can help me too. With the right beat, I can try to walk with the rhythm.
I’ve used headphones to listen to the metronome, music or even a recording of the cadence.
Sometimes I rock from side to side, shifting my weight from one leg to the other until I can turn that movement into a step.
Sometimes I’ll make a very small movement backward first and then try to use the resulting forward weight shift to start walking.
And sometimes I shuffle.
I’ll make tiny sliding movements with my feet—sometimes only a couple of inches—and try to turn that shuffle into actual walking.
Rhythmic auditory cues, counting, music, weight shifting and other cueing strategies are recognized approaches used to help some people with Parkinson’s overcome freezing episodes. A physical therapist familiar with Parkinson’s can help determine appropriate strategies for an individual.
But I’m not giving you a list of things that will work for you.
I’m telling you what I’ve tried.
Sometimes they work for me. Sometimes they don’t.
Sometimes the Adaptation Needs an Adaptation
There’s another Parkinson’s wrinkle to all of this.
A smartphone can help me walk.
But sometimes Parkinson’s makes it difficult for me to operate the smartphone.
There are times when accurately touching small buttons on the screen is difficult. So I’ve increasingly tried to make things work by voice.
If I can use Siri to start the cadence, music or another tool, I don’t have to accurately navigate a touchscreen at the very moment Parkinson’s is already demanding so much of my attention.
That’s become a broader adaptation in my life:
Sometimes the adaptation needs an adaptation.
Once I’m Moving, I Don’t Necessarily Want to Stop
Breaking a freeze isn’t always the end of the problem.
Once I’ve finally established a rhythm, sometimes I don’t want to lose it.
Imagine I’m leaving a restaurant.
I’ve gotten up from the table. I’ve stood there for several seconds trying to initiate movement. Maybe I’ve shuffled until the shuffle finally becomes a walk.
Now I’m headed toward the register.
If several people step ahead of me and stop to pay, I’m already thinking:
I need them to clear out.
Because if I stop, I may freeze again.
And then I have to start the entire process over.
Sometimes getting started is so difficult that once I’m moving, I don’t want to stop.
There Are Times When Frustration Wins
There is another part of this that I’m not proud of, and I absolutely do not recommend it.
But it’s real.
When I’m alone and I’ve been frozen long enough, sometimes I become incredibly frustrated.
I’ve tried to make my legs move.
I’ve tried the techniques.
And eventually I’ve reached the point where I’ve thought:
I don’t care if I fall. I just want to move.
I’ll hold my arms slightly out to my sides and begin slowly leaning my upper body forward.
It’s almost like standing backward at the edge of a swimming pool and gradually leaning back until gravity finally takes over—except I’m doing it forward.
Eventually my upper body starts falling.
I’m hoping my legs will respond and take a step before I hit the ground.
Sometimes they do, and it becomes a stumbling movement forward.
But I know I could fall.
This is not a freezing technique I’m suggesting anyone try. Freezing itself increases fall risk, and Parkinson’s organizations specifically recommend working with clinicians and physical therapists on safer strategies.
I include it because leaving it out would leave out part of the experience.
It shows how frustrating it can become to stand there knowing exactly what you want your body to do and still not be able to make it happen.
Freezing Affects Me Even When I’m Not Frozen
There are places I probably wouldn’t go today because of freezing.
A packed professional football game is a good example.
Think about everything involved.
Walking through crowds toward the stadium.
Security lines.
Gates.
Crowded concourses.
People suddenly stopping in front of you.
Then getting to your row and turning sideways while people stand so you can squeeze past them to your seat.
I can picture myself freezing in several of those situations before I’ve even left home.
And if I freeze while squeezing down a stadium row, I don’t just worry about being embarrassed. I worry about losing my balance and falling into the people in front of me.
So I might simply decide not to go.
Freezing of gait affects me even when I’m not frozen.
Because I know it might happen, the possibility travels with me.
What Other People See
If you’re sitting in a restaurant and see me finish breakfast, stand up and then remain beside my chair for several seconds, you might wonder what I’m doing.
Most people stand and walk as one continuous movement.
I may stand first.
Then I have to figure out how to walk.
You may see me holding onto the chair.
You may see my feet shuffle.
You may see me stumble forward.
I’ve had someone begin to jump up from his seat because he thought I was about to fall.
And I’ve wondered many times what this looks like to strangers.
At times, Parkinson’s movements, gait and balance problems can be misinterpreted by people who don’t understand what they’re seeing.
But perhaps the bigger thing I want people to understand is this:
If you see me stand up and just stand there, I haven’t forgotten where I’m going. I may simply be waiting for my legs to join me.
Walking Isn’t Always Automatic Anymore
This may be the biggest thing I wish someone without Parkinson’s could understand.
You probably don’t think about walking across a restaurant.
I might have to think about nearly every part of it.
How am I going to get the first step started?
Can I keep my rhythm going?
Is somebody going to stop in front of me?
If I stop, will I freeze again?
How am I going to make that turn?
How am I going to get through that narrow space?
Parkinson’s can interfere with automatic movement, and walking can require more conscious attention than it once did.
So when you see five seconds of me standing beside a chair, you may see somebody doing nothing.
Inside my head, there may be an enormous amount happening.
Something that is automatic for most people isn’t always automatic for me anymore.
My Freezing Has Changed Over Time
I first remember freezing becoming noticeable around 2020.
Initially, it wasn’t frequent.
Over time, it became much more common.
Being more fully ON has generally helped me. Freezing can occur during OFF periods and, for many people, can improve when dopaminergic medication is working.
DBS is more complicated.
Before my DBS surgery, I remember being specifically warned that freezing was something I should not count on DBS reliably fixing.
That turned out to matter in my own experience.
There was a period when DBS was controlling enough of my other symptoms that I could sometimes get well into the morning before taking oral medication.
But freezing could still break through.
Current information reflects that complexity: DBS may improve freezing for some people in some circumstances, but its effects on freezing are variable, and freezing may persist or return.
That’s another reason I don’t try to turn my experience into a rule for somebody else’s Parkinson’s.
I can only tell you what happened to me.
What I’ve Learned
I wish I had one trick that worked every time.
I don’t.
I’ve learned to keep several tools available.
Sometimes cadence helps.
Sometimes music helps.
Sometimes a metronome helps.
Sometimes shifting my weight helps.
Sometimes a tiny movement is enough to get a bigger movement started.
And sometimes none of it works the way I want it to.
But if you’re living with freezing too, maybe one thing I’ve tried—or one situation I’ve learned to anticipate—will give you an idea worth discussing with your Parkinson’s care team.
That’s why I’m sharing it.
Not because I know how you should manage your freezing.
Because this is how I’ve learned to live with mine.
And maybe something I’ve learned along the way can make somebody else’s road a little easier.
I’m not the expert on Parkinson’s. I’m the expert on me.
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