After ten months flaring off and on, it’s abundantly clear I’m now in a full-blown PANS relapse. Yes, there’s been OCD, anxiety, tics, depression, and food issues. But they all come and go. What never leaves, and is in fact worsening, is a loss of coordination and motor planning abilities. I’ve never seen an article on PANDAS/PANS and dyspraxia, so it’s time to raise the alarm on this absolute menace of a symptom.
Had I known this fact, I could have saved myself years of suffering and self-loathing. I ask you to please consider sharing this post to help me help the next person who needs to know about dyspraxia. Now, let’s take a deep dive into what PANDAS/PANS and dyspraxia look like and how to help…
In this article:
What is Dyspraxia?
Dyspraxia is a motor planning and integration disorder.
Merriam-Webster’s Medical Dictionary defines dyspraxia as, “impairment of the ability to perform coordinated movements.” When dyspraxia is present from birth rather than acquired, in the USA, it’s diagnosed as Developmental Coordination Disorder.
The presentation and severity of dyspraxia can vary dramatically from person to person. Some people have difficulty with single-step, fine or gross motor skills (ideomotor dyspraxia) but little difficulty with motor planning. Others have strong fine motor skills but severe difficulty figuring out how to execute sequences of actions (ideational dyspraxia). Sometimes, dyspraxia affects a person’s ability to articulate their thoughts in speech (verbal/oromotor dyspraxia). Some people have all of the above.
You may also hear the term apraxia, which represents a loss of a skill rather than difficulty with it. For example, people with ideomotor apraxia can carry out actions automatically, but not on command. A person with apraxia may be able to swat a fly away from their face reflexively, but if you ask them to touch their head, they can’t do it. This is because ideomotor apraxia impairs planned motor actions but not automatic ones.
If you’ve begun experiencing apraxia, it’s probably a good idea to discuss a complete workup for autoimmune encephalitis with your doctor. Acquired apraxia is a potential sign of a serious disease process.
Does PANS/PANDAS cause dyspraxia?
I haven’t seen any research confirming PANS/PANDAS causes dyspraxia, but that likely just means no one has bothered studying it. There is a tremendous lack of awareness on what the condition is and what it looks like.
We know dyspraxia is caused by problems in (among other areas) the basal ganglia—a region of the brain PANS inflames. Scientists have known from the beginning that PANS impacts motor functions, so it makes perfect sense that PANS could cause impairments to motor planning. Besides, dyspraxia is a known effect of other types of encephalitis.
Although I didn’t put a name to the symptom until recently, looking back, dyspraxia has been present in most of my flares to varying degrees. I believe 100% that PANS/PANDAS causes dyspraxia, but alas, I’m not a researcher—I’m a patient with a B.S. and a keyboard.
What do PANDAS/PANS and dyspraxia look like for me day-to-day?
For me, dyspraxia isn’t just that I run into things, drop objects at almost-comical rates, struggle to write by hand, write the wrong letters, and lose my way in doctor’s offices I’ve been to many times. No, my motor planning skills are so poor in a PANS flare that, on the bad days, I need help just getting dressed and getting bathed. My brain simply cannot compute the amount of steps required for these tasks. I try to do them, and instead I freeze and space out due to overwhelming my brain past its limits. I mainly deal with ideational dyspraxia.
I’m not impacted as severely as some, as there are many things I can still do extremely well. Again, my dyspraxia doesn’t affect learned actions, nor does it impact intelligence. However, if the slightest unexpected change to a multi-step process happens, I don’t know how to cope. I can still type at a blistering pace of one hundred words per minute. But new tasks requiring physical actions or changes to my routine? That’s another story, especially if in a new environment outside my usual routine.
I recently found this out the hard way while staying at a relative’s house…
PANS and Dyspraxia have stolen my independence as an adult.
Last weekend, I had the idea that, maybe, if I got away for a few days, I could break myself of my “bad habit” of going to bed at 4 AM. Maybe I could establish new routines that made it take less time to go to bed and get out of bed in the morning.
But no, oh no. Instead I’ve come to the conclusion I can indeed no longer live independently. I have regressed. The weekend showed my dyspraxia has gradually worsened over the last two years—beginning shortly after I stopped IVIG, and when my B cells came back post-Rituxan. In contrast, during my worst PANS flare ever in 2017, I continued living on my own.
I once lived independently for five years. I went on several trips post-2017 and pre-pandemic with no dyspraxia-like issues. Something has gone catastrophically wrong recently, and I think we have a good guess what it is: brain inflammation.
Having dyspraxia and PANS means constant mental exhaustion.
By all accounts, it should’ve been minimal effort for me to feed myself and get ready each day on my weekend misadventure. My mom had helped a lot by getting food together for me to heat up and setting out personal care items in the bathroom before she left. Well, that first night, I must have spent at least half an hour staring at the bathroom and trying to figure out the exact sequence of actions I needed to complete: where to sit, when to stand, where to put each item when I was done. Somehow, I got in bed eventually, but I was absolutely exhausted by my simple bedtime routine.
Most people don’t think twice about doing tasks they know how to do in a new place. But when you think about it, there are many physical actions you have to alter, and you may even have to do things in a slightly different order. For the person with ideational dyspraxia, these changes can be enough to cause extreme difficulty and exhaustion.
The next morning, once again it was the same issue. Yes, I got out of bed eventually, but it took three times as long to come downstairs as it would a neurotypical person doing the same tasks. I had to lie down for a bit first to recover from the mental exertion. It was no wonder I utterly failed at breakfast…
Ideational Dyspraxia is the ultimate “I should be able to do this” disability.
Though I had the physical dexterity necessary to make my smoothie, dyspraxia prevented me from doing so in the new environment. You see, “make a smoothie” is entirely too nebulous of a task. I heavily rely on routines for preparing food in my own kitchen which I’ve established for years. With the change in environment, my brain no longer knew how to translate the task into discrete physical actions. Then there was the issue of not properly calculating the number of steps required, nor the amount of sitting ME and POTS necessitated: too many variables, too much improvising, and not enough motor planning abilities.
It didn’t matter that I knew exactly where the ingredients and the blender were. It didn’t matter that I knew how to make the smoothie. The issue was my brain couldn’t handle figuring out how to carry out the slightly different actions required to operate in a kitchen I wasn’t used to.
Let’s just say I didn’t even last 36 hours away from home.
It’s hard to give myself grace when I know I’m physically capable of doing a task, and yet I can’t do it. I could theoretically do many more things if only my brain allowed. The motor skills are there, but the inability to execute prevents them from happening. It feels like I’m trapped in a cage while someone dangles a delicious piece of cake just out of reach
My intellectual abilities remain intact, but because of dyspraxia, I can no longer do a certain type of work in my field. It is too many steps, and too ill-defined. I have many ideas, I try to bring them to fruition, and instead I completely shut down and just stare into space. I cannot process where to even start, so my brain short-circuits. Losing the ability to do this type of work has been a unique form of torture. I don’t say this lightly.
How did I get a dyspraxia diagnosis?
You may be wondering, how is it I know about dyspraxia when the word is rarely referenced in the neuroimmune community? Do I have an official diagnosis?
Last spring, I told my psychiatrist I couldn’t figure out why taking care of myself had become so mentally taxing. Thinking I had an unusual manifestation of depression, I expected an increase of one of my anti-depressants. Instead, he told me: “I think you have dyspraxia.”
Thus, I got a referral for neuropsychological testing this summer. In a dyspraxia neuropsychological assessment, a psychologist compares motor-related skills against IQ tests to see if there is a larger than expected discrepancy. For example, a person with a high IQ and average motor planning could still receive a dyspraxia diagnosis. On the other hand, a person with an average IQ and average motor planning wouldn’t meet criteria.
Sure enough, the results of my testing were shocking.
The testing showed my hand-eye coordination is now two standard deviations below where it was when last tested at age thirteen. There’s a 60+ IQ-point difference between my intelligence and my weakest motor-related skill. A healthy, neurotypical person would be expected to have no more than a ten- to fifteen-point discrepancy between intelligence and motor skills.
You can imagine such a wide discrepancy is a major source of frustration for me. I would go so far as to say my dyspraxia has a more severe impact on my life than my ME. And trust me, that’s saying a lot. ME doesn’t let me stand for more than a minute or two at once, forces me to spend most of the day lying down, and steals physical energy such that my life has gotten incredibly small and focused. And yes, having impaired energy from ME absolutely exacerbates my dyspraxia.
If I didn’t have ME, I might be able to compensate for my deficits more easily. I might be able to push through the extraordinary mental effort it takes to do certain tasks rather than shutting down. And I wouldn’t have tasks complicated by the fact I’m constantly aware of a need to sit down—the constant need for a chair adds a lot of additional motor planning.
What helps me live with PANS and dyspraxia?
If dyspraxia is a symptom of active brain inflammation, then treating the inflammation is the best solution. However, some treatments take months to work, so coping strategies are important.
I often need to stop and visualize myself in my mind doing a new action before attempting it. Or, I need to see someone else do it. For example, I recently felt completely overwhelmed by the thought of having to clean a medical device every day even though it was quite simple. After watching my mom do it, I had little trouble doing it myself. The psychologist who diagnosed me referred to these strategies as “warming up the motor pathways.”
Checklists are also supposed to be helpful for people with dyspraxia. They probably work for some people. For me, if you show me an entire checklist all at once, I freeze. I see all twenty actions written out, and it’s too overwhelming. All I can think about is, I have to summon the mental energy to do twenty things. It becomes impossible.
All of this said, because I also currently struggle with executive functions like planning and organization, I’m completely dependent on having all the steps written out when in a new environment. It helps me in my own home, too. By only seeing one step on a page at a time, my brain can focus on only the one action. I know if I follow the routine, I’ll get everything done that I need.
And of course, having help from someone else makes a big difference. While the goal is independence someday, likely after more PANS immune treatments, sometimes it’s best to simply accept help with cooking and self-care.
How to help a person with dyspraxia
The Scottish Acquired Brain Injury Network says of dyspraxia:
“It is important to note that dyspraxia can often be perceived as a lack of co-operation on the person’s part. This can often be because the individual has been observed performing a task independently one day but being unable to do so the next. This variability is normal.”
It’s important to believe the person with PANS and dyspraxia, whether that’s you or someone else. Never tell them they are just lazy or not trying hard enough. Respect the fact that, during a PANS flare, pushing to do things the brain truly cannot handle won’t fix the dyspraxia.
Sometimes, Physically Assisting your person with dyspraxia is the best course of action.
For example, some days I need to be gently pulled out of my bed to get going. It also helps if my clothes are set out logically ahead of time so I don’t have to both plan and carry out getting dressed. Minimizing the amount of steps required to make food helps as well. And finally, consistency with routines is essential.
For me, pushing harder through PANS and dyspraxia makes things worse, because I’m already spending so much energy just trying to keep existing. In an acute flare, I do not have the energy to fight back against my motor deficits. In these times, when I’m forced to attempt sequences of actions my brain really can’t handle, I end up in a dark headspace. Then, I can’t stop thinking to myself: I am incompetent. I cannot possibly live this way the rest of my life. I don’t want to live like this. This is way too much, and I’m too exhausted to go on much longer. If the steroids don’t work…
You get the idea. There’s a fine line between encouraging someone to fight back and pushing them too far into something that will lead to frustration and worse. Let the person (or yourself) take the lead in recognizing what’s possible each day. Be kind to yourself or your loved one, always. Trust me: we very much want to be independent!
How do PANS and dyspraxia relate to autism?
This article wouldn’t be complete without acknowledging that dyspraxia and apraxia are more common with autism. Anecdotal evidence suggest PANS is more common in autistic people compared to non-autistic people, though it’s likely under-diagnosed. This is due to the discriminatory tendency to dismiss new symptoms in autistic patients as “just the autism,” rather than completing a proper medical workup.
Apraxia of speech, meaning a person struggles to coordinate movements required for speech, is essentially a more severe type of dyspraxia. (Apraxia of speech is the diagnosis given to autistic people who are non-speaking.) I hypothesize that many autistic folks have apraxia or dyspraxia worsened, if not caused, by PANS. Unfortunately, no one has studied this.
As an aside, I feel like people unfairly accuse autistics and PANS patients of being too rigid with our routines. They assume we’re rigid just to be rigid, or they think maybe there’s OCD behind it. But guess what? Routines done the same, exact way every time make tasks less overwhelming for someone with dyspraxia. Of course if something changes, we’re going to get upset, and some people will have meltdowns. We’ll have to push our brains to adapt and figure out the motor steps all over again, and it’s frustrating that it’s so difficult.
Personally, as an autistic, I find that dyspraxia has a way of exacerbating the elevated level of anxiety and reduced tolerance to stressors that PANS already causes me. It creates a feedback loop. The dyspraxia leads to burnout from constant over-compensation, the burnout leads to reduced tolerance for stimuli and demands, and the reduced tolerance makes it that much harder to cope with the burden dyspraxia places upon me. Suffice it to say I reached the point where the only way forward was by finally accepting the root of my symptoms…
Where do I go from here?
I’m currently on a Prednisone burst because my decline became alarmingly undeniable following my recent trip. After four doses, I’ve seen improvements, but I’m definitely still struggling. I’m hopeful the oral steroids will keep providing temporary relief until I get to upcoming appointments with a rheumatologist and an immunologist who specializes in PANS. Because coordination problems are more known as an encephalitis symptom, I might need a more in-depth workup. Or maybe they’ll just give me IV steroids again. We’ll see.
For whatever reason, my immune system is no longer fighting off infections effectively, and there’s a highly elevated amount of Strep in my gut. I believe my five recent infections accelerated this relapse that is causing my dyspraxia. I’ve been working to get rid of the infections and rebalance my gut, but it’s not a quick fix. It’s clear I need more aggressive measures.
The fear that I might not recover this time from my PANS relapse fills me with unspeakable dread. Living with a motor-planning deficit is one of the more challenging symptoms I’ve faced. I worry that, if this dyspraxia has been gradually worsening for a couple of years, might it be too late for a full recovery?
But guess what? I recovered from PANS after eight years with no diagnosis. I will choose to hold onto hope that I will soon do it all over again…
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Head with gears drawing credit: Rflor, CC BY 4.0 https://creativecommons.org/licenses/by/4.0, via Wikimedia Commons
Dyspraxia graphic credit: MissLunaRose12, CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0, via Wikimedia Commons