Mind vs. brain: Gait freezing is a perplexing Parkinson’s symptom
While it wasn't painful, it certainly was scary, this columnist says
I’m often asked what it feels like to have Parkinson’s disease. My answer? Just plain weird. As frequently as I’ve tried to explain it, I just can’t do it justice.
One of my early motor symptoms was gait freezing. I’d be walking along, and suddenly, it was as if my foot were bolted to the floor. It was the strangest sensation. I’ve been walking most of my life! Why couldn’t I do it now? It was also unsettling because it wasn’t happening every time I tried to walk. It came and went.
Before my diagnosis, my husband and I would joke about the “hitch in my giddyup.” It didn’t hurt; I wasn’t in pain. I just couldn’t make it go away. It seemed silly that a 35-year-old with pretty average health would lurch along like that. But in reality, it was kind of scary.
Not only would I get stuck mid-stride, but even when I could make my feet go, it was as if I were walking underwater. I couldn’t move my feet faster than an odd, slow-motion pace. And it wasn’t like when you’re running and can’t move any faster because you can’t get oxygen. It was like an invisible force that I couldn’t escape.
Trying to describe a freeze
Getting stuck like that was the strangest experience. I’ve described it many times as my mind and my brain getting into a fight. My mind, the conscious thinking part of me I could control, would say, “You have taken thousands of steps in your life. Your legs know how to make it happen. Bend the knee, lift the toes, take a step.”
Then my brain, the deep nerve center that usually takes over when you do routine tasks like walking, would just say, “No.”
My mind knew that I had joints capable of moving. I knew that my leg was capable of supporting my body weight. I knew the mechanics. My mind would be screaming, “You can walk!” and my brain would answer, “No, and screw you!”
I’ve always been the “smart kid” in class. I work with my brain. I’ve never been much of an athlete, and my identity has always been tied to my ability to think things through logically and come up with solutions. But I couldn’t outthink Parkinson’s disease.
Parkinson’s can be so frustrating and isolating because unless you’ve experienced this crazy battle between your mind and brain, you can’t understand. Words fail to convey the fear of no longer trusting your brain to navigate you safely across a room. My mind would want to go someplace, but my brain couldn’t get me there.
When I got stuck, sometimes my husband’s automatic reaction was to give me a nudge or a tug on my arm, which seemed helpful. But in truth, it was terrifying because I felt so rooted to the ground that I thought I’d fall over. I had to learn a new language to tell him and others how to help me.
Eventually, medication and deep brain stimulation surgery would help tremendously. I walk much better now and rarely get stuck. But no one could have prepared me for the weirdness of having young-onset Parkinson’s. And I’m sure my words can’t express its reality, either. But just know, you’re not alone in this fight between your mind and brain.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Ivan
We heard recently that to unfreeze a "gait-stop" try moving ones gaze left and right and back a few times - horizontal only not vertical.
My wife who has the PD says it works sometimes when she remembers to do it ! and others were not surprised - saying that then uses a different part of the brain to give the instruction - We think it will do no harm to persevere !
Kiran Bagga
What kind of medication did you Teke to get out of freeze
Fumiko Tasaka
I really enjoyed the article about Gait freezing. I Completely relate! So was it the deep brain stimulation that helped your gait return to normal? Tremors are not a big issue for me. I just have weakness on my left side and my walking is difficult. Wishing the best to you.
Don Partington
Hi- I’m curious about a few things. What was the main reason you had DBS. Was it your gait problem, or tremors or something else? Did you have one side or both sides done? Is your gait back to normal or is it still acting up at times?
Do you have other Parkinson’s symptoms?
I have had Parkinson’s for 11 years and had DBS on the left side of my brain to eliminate tremors on my right hand and arm. that was done this past January. Meanwhile my walking has deteriorated and I am getting freezing of gait which bothers me because I was very much into sports all my life. I asked my neurologist about operating on the other side of my brain, and what could be done about my gait, and he said he would not recommend the surgery because of my age and it could affect my balance. There was nothing he could suggest to help with my gait. I’m 81 and have a very positive attitude and still try to be active (every day I walk 2 miles), but I miss driving and many activities. Plus I live alone and have no family.
So, I also want to ask if you know of anything else that could improve Gait.
Wishing you a wonderful day.
Cheers
Thomas Whalen
I too suffer from Primary Progressive Freezing of Gait. You mention in this recap that DBS and medicine have helped with your FOG symptoms. What medicines did you take? I'm on amantadine it.helps but some of the after effects are bothersome. Would appreciate any advice.
John Citron
Yes indeed, freezing mid-stride like that is weird. I've described it as having suction cups on my feet that suddenly grab the ground.
Please be careful! This can still be dangerous!
I have frozen suddenly just before I've gone down stairs and ended up stumbling down them. I was lucky that I caught myself before going all the way down by grabbing the hand rail. When I told my neurologist about the incident, when we discussed my falls, she told me to think about every step. She also said having a metronome ticking and counting to that can help keep the feet moving. Being a musician, that's not an issue because I have at least three of them around my room with different volumes set up on various keyboard instruments.
Colleen Kelly Laich
I’m very interested to learn that DBS helped your freezing of gait. My husband has severe FOG and every neurologist that we have asked has stated DBS would not help. Are you able to share where you had the surgery and who performed the DBS?
Diane R Kile
My most annoying symptom is gait freezing. Not while I'm already walking but when I'm standing still and I want to walk away. It's scary because I take off to cross a room or just try to walk a short distance only my feet feel stuck to the floor and my upper body is already moving and I'm halfway there. That's when I fall. Has anyone developed a trick to alert you brain to tell your feet to unfreeze and move?
Paula Fournier
Mollie, I love your sassy attitude towards Parkinson’s.
Shirley Engebretsen
I enjoyed your article. I can relate now. When I first had Parkinson that was not an issue. Now, nearly ten years later, my left foot gets frozen. Sometimes, when trying to walk, I end up on tiptoes, which scares me. I have to think hard to get the heels of my feet back on the ground. If I didn't I would most likely fall.
Thanks for sharing.
Luis A Correa
I live in Huntington N.Y and would like to join a Parkinson’s group Is there any you may of.
Thank you.
Elly Melein
Ik ben 82 en heb sinds 8 jaar Parkinson! Ik doe yoga, ismakogie, fysiotherapie en wandel minstens 3 mijl per dag. Neem elke 4 uur, van 7 tot 19 uur, 2 levodopa en een mucuna pruriens.daar kan ik goed mee leven. Ik heb nog geen freezing en geen tremors! Ik leef wel heel gezond! Kijk maar eens bij harriecrijns.Nl en dan naar Gezond oud worden!!
John Bautista
I have a crazy - like shuffle of my feet when I have to suddenly change directions when walking...or I suddenly move about like I have had a few drinks too many! That's when I know my dopamine in my brain needs to be resupplied by another dose of ldopa or sinemet.
I seem to get some relief though recently in my gait walking problem when I tried using "water shoes" or some other versions of footwear that have thin soles that make me feel my toes to the ground. Really strange at first, but it seems to help..
...hope it lasts for a whole while!
Mary Riga
Well as a neurologist i read all the comments.Kudos to anyone who is "nosy" and searching.Last publishing in Europe the median age of onset is around 35,which is scary.In Germany reaches 30.I wont say anything medical,just an experience I had with a female pt 20 yrs ago when I was a resident.The attending physician had admitted a woman in her 60's with the symptoms of frozen shoulder.I thought why is she in our wing and not orthopedics.Anyways history of falls and clinical examination led to Parkinson's so its not only the feet.U can experience symptoms in the upper arms too.Stay safe