What You Need To Know About MS Cognitive Dysfunction
I recently completed a stint in neuro-rehab for some much needed attention to my MS. I had a full MS glam-up with a speech language pathologist (SLP), occupational therapist (OT), and a physiotherapist (PT) who put me in a harness and nurtured some latent Cirque du Soleil dreams. At the end of the program I had a cognitive evaluation, which is why you clicked this bait–cognitive dysfunction needs to be on your radar if you have MS.
What is cognitive dysfunction in MS?
MS can affect so many things it would be less of a bummer to list the ways it can’t mess with you. When it comes to cognition, MS can impact memory, concentration, problem-solving, verbal-fluency, and word-finding as well as the speed and efficacy at which we process and remember information. Changes can be subtle and are often overlooked, go unnoticed, or are blamed on natural ageing, but it’s important to know if MS is causing cognitive dysfunction. What gets measured gets managed.
I’m pretty sure some cognitive impairment explains why I got mascara in my hair and eye-shadow on my ankle this morning, and why I sometimes put ground coffee in my mug instead of in the pot. I no longer keep the tube of shea butter next to the toothpaste, or my nail polish remover next to my eye make-up remover. I’m blaming MS on my struggle to identify and remember faces, though I’m not sure who to blame for the difficulty I have concentrating on The Banker’s questionable movie choices (I’m lying, I blame him).
I don’t feel as quick as I used to; but truthfully, there were no major red flags to signal a serious problem. Nonetheless, I bought into the importance of a baseline–it wasn’t a hard sell. I was curious, and I kinda like taking tests. Part of me looked forward to proving to myself that my ageing brain isn’t ageing as fast as my legs. Plus, I was promised no math. I’m smart, but I’m not, like, math smart.
What’s it like to have a cognitive evaluation when you have MS?
Keep in mind that there are a variety of cognitive function evaluations for people with MS, and your experience may not be the same as mine.
Part one involved an hour-long intake session with a social worker (SW) on a video call (because, plague). I was asked the standard what meds are you on Q’s, but also things like where I went to school, what I studied, and what kind of work I did. This was for the SW to get a sense of how big my brain was before I got brain damage and decided blogging was a reasonable career.
The actual evaluation took 3 hours. It started at the ass-crack of 10:00, and was a half-hour drive away; so, obviously, I didn’t get up in enough time for breakfast or coffee. Not wanting to blame poor results on a lack of java, I swallowed a handful of chocolate-covered espresso beans in the car. Plus, chewing my caffeine meant I was less likely to have to pee. These are the kinds of problem solving skills you develop with MS (but, sadly were not on the test). I was a little nervous about what I was about to find out about myself, so I discreetly wore my McGill University t-shirt underneath my sweater to remind myself of my recent A in Spanish. This was another life hack; because, later, I wore that t-shirt to bed.
The test started easily enough, asking me to define simple, then increasingly difficult words. When we got to “palliate” I had a Winona Ryder in Reality Bites moment.
Then I was asked what tide and music have in common, I can’t remember what bullshit I made up (The Banker: they’re both spelled with an “i”). But where I really let myself down, was when I was asked to quickly list words starting with various letters, and the first letter was ‘A’. Do you think I said ‘apple’, like a normal human person? No. I, for real, said ‘ambidextrous’. Then I said–brace yourself–‘Anise’. Like some kind of psychopath. The next letter she gave me was ‘S’, and I didn’t say ‘suck’ or ‘sick’. And finally, she gave me ‘F’. ME. You’re thinking this was my time to shine, but I DIDN’T SAY IT. I thought it, and then it was all I could think of. Maybe I said ‘flummoxed’, because that’s exactly how I felt.
Some tests were easier than others; a fact that hinted at my areas of strength and weakness. I got to play with blocks (there was a lot of hand-sanitizing), and prove how bad I am at drawing. (After I copied a sketch, SW expressed some relief that I’m not an engineer or an architect.) For the most part it went well and was even kind of fun; but I felt myself starting to crash in the last half hour or so when the effects of the 17 magic beans I’d had in lieu of breakfast wore off. The final test felt like the hardest. I had to count backwards by threes (which sounds a lot like fucking math), while remembering a combo of letters.
What happens after a cognitive evaluation?
A week after the test I had another video call with the SW and a neuro-psychologist who analyzed the results. Basically, the evaluation confirmed what I already knew. I mean, I guess I hadn’t considered that I would be a terrible architect, but it’s not something I wanted to do anyway.
Lucky for me, my strengths line-up with my interests. The test proved that even without the fuck word, words are still my super-power, and the real reason The Banker never wins an argument with me. My verbal fluency is “fast” and “good” (or, expeditious and cogent, if you will). There were a few annoying “glitches” that came out, but none that really affect my ability to do what I do (take selfies and talk shit on the internet.
I struggled when I got knocked off one task and had to redirect my attention. This really wasn’t news to me; but, it’s helpful to have a medical team validate the fact that if you ask me about the grocery list while I’m watching TV, I’ll tell you to pick up a shovel, a lawyer, and some Miss Vickie’s chips if they’re on sale, and even if they’re not. (I’ve been watching a lot of true crime.)
The only area where I was a true disaster, or as they put it “showed severe impairment”, was the facial recognition test, which I knew I would tank. People have been calling me out on this for years. (Me: Nice to meet you. Them: I’ve lived next door to you FOR 5 YEARS!) If you would like to commit a felony in my presence, have at it. There’s now official documentation that I’m a useless witness.
So, do you need a cognitive evaluation?
Like any other potential MS symptom, cognition should be regularly assessed. The National MS Society recommends screening for MS-related cognitive dysfunction once a year, and more often if you notice changes that affect your functioning. Getting a baseline when you’re first diagnosed can help detect changes later on, but many doctors wait until changes become apparent, despite the fact that cognitive dysfunction affects between 40-65% of people with MS. Knowing your cognitive strengths and weaknesses can help you figure out if you need modifications to your job or school, and if you would benefit from things like more breaks, longer exam times, a quiet work space, and/or reduced hours or workload.
How can you protect your cognitive function?
If you think you’re experiencing MS-related cognitive dysfunction, there are things you can do. Neuro-fatigue and increased body temperatures can affect cognition, just as they can aggravate existing MS symptoms like mobility or vision. Pace yourself, stay hydrated, and, maybe, don’t do your taxes when you’re tired. Depression and lack of sleep can impact cognition and should be treated. Many medications used to manage MS symptoms can also have a negative impact on cognition. If you have a cognitive assessment you will be offered personalized suggestions to help address any problem areas.
Even without MS-related cognitive dysfunction, we all experience cognitive changes as we age. We should think of our brain like a muscle, and exercise it. Read, write, paint, do puzzles, create recipes. You don’t have to learn coding or Mandarin if that’s not your thing. Find brain-boosting activities that you enjoy, and make it fun. Our brains are amazing, and adaptive, and are good at learning to compensate. As my neuro-psychologist said, “information-seekers create more reserve and tend to have milder cognitive impairment”.
I’m doing what I need to keep my cognition strong so that I can continue to use my brain for important things like
helping my niece with her French homework reading gossip blogs and beating The Banker at board games. What’s your favourite way to protect yourself against cognitive dysfunction in MS?