Bethany Chalmers has tardive dyskinesia (TD) which involves involuntary, repetitive body movements. Living with a chronic movement disorder like TD can have a real-world impact on a person's life. Bethany Chalmers talks about the obvious drawbacks, such as struggling to carry hot soup because her hands can move unpredictably. She also highlights some less obvious but no less frustrating issues, like wearing out shoes and bedclothes at an accelerated rate.

Tardive dyskinesia can impact a person's life in many ways. In my case, the ways I'm affected are primarily social and emotional, such as when others notice the twitching of my feet and arms. I also experience physical challenges, such as trouble falling asleep. So, today, I'd like to share three ways tardive dyskinesia affects my life beyond its physical symptoms.

3 ways tardive dyskinesia affects my life beyond my body

1. Trunk movements that keep me awake

I often experience jerking of my trunk or core, particularly when I'm trying to fall asleep and especially when I’m under stress. When I’m tired, I’m more likely to be susceptible to stress, which may have a domino effect on how I manage my symptoms.

This doesn't affect me during the day, and I don't know why. But it really keeps me from falling asleep sometimes, as the only way I can stop the movements is by consciously controlling them, and you can't do this as you're drifting off to sleep!

These jerks are like what people without TD might sometimes experience as hypnic jerks – when your muscles suddenly contract just as you're about to fall asleep. Except the jerks from tardive dyskinesia happen much more often and almost every night.

I don't know how I manage to overcome this when it happens, but I will eventually fall asleep. Maybe I get so tired that my exhaustion overcomes my body twitching? I also don't know how much I twitch in my sleep or if something about being unconscious somehow turns off the brain processes that result in tardive dyskinesia.

Thankfully, my twitching has never kept my partner awake, and they have never mentioned it. And, luckily, my symptoms don't disrupt my sleep – once I’ve managed to fall asleep, that is! That said, I know some twitching continues during the night because I wear holes in my sheets down by my feet. But more about that on the next point.

2. Foot twitching that wears holes in socks, shoes, and sheets 

In my previous article, I discussed how my involuntary movements can lead to accidentally kicking people under the table at family dinners and restaurants and how this can lead to embarrassing apologies. But I didn't mention how my mother-in-law's cat loves watching my twitchy, dancing feet! The cat hasn't pounced on them yet, fortunately! But she does watch intently, particularly my right foot, as it sways back and forth as I sit on the couch in our living room. Cats love watching anything that moves often enough, I suppose.

I also wear holes in my bedsheets and my sneakers. Apparently, my right big toe twitches even more than the rest of my body as the bedsheets and the sole of my sneakers develop holes. In the case of my sneakers, the constant repetitive movements create big worn spots, and even the toes of those socks get in on the fun! Unless I'm actively paying attention to my feet, they twitch non-stop. Either this does not cause muscle fatigue, or I’ve been experiencing that fatigue for so long that I don't notice it anymore. 

So, while a person might write off tardive dyskinesia as mostly a cosmetic problem, as friends have done before I explained the issue more fully, in this case, it has very real-world consequences. Even well-made shoes become worn out pretty quickly, and they are not cheap to replace.

3. Hand twitching that can make daily tasks tricky or cause accidents

Compared to the constant foot and toe twitching, along with regular trunk movements I experience, my hand twitching is much milder.

I do sometimes experience hand tremors, but they are from another one of my medications that I’ve taken for over a decade and are generally well-controlled. Sometimes, however, I experience breakthrough tremors from stress or too much coffee, or I have hand twitches, which are different, bigger movements than the tremors. 

While the tremors are more of a rhythmic trembling, affecting activities such as signing a check, the twitching is jerkier and more unexpected, making it difficult, for example, to carry a bowl of hot soup. They are two distinct symptoms; luckily, both are minor and well-managed.

I specifically learned to control the jerking when I get my pulse checked before giving blood. It's not that a little twitching would get in the way of getting an accurate heart rate, but - like when I accidentally kick people under the table – it's a time when my tardive dyskinesia symptoms are more obvious and embarrassing. In this case, my strategy is to concentrate on the body part in question, which works with some success.

Usually, though, I don't think too much about controlling my symptoms and try and get on with my life as normal.

The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition. 

The individual(s) who have written and created the content and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence, or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen.

NPS-ALL-NP-01469 FEBRUARY 2025