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.
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.
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.
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.
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.
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?
23 thoughts on “What You Need To Know About MS Cognitive Dysfunction”
Haha, loved what you wrote about counting backwards by 3s sounding suspiciously like math! When you said math I felt like why did I have to do math on mine!!! (I think it was counting forward by 4s, but something way more diabolical than that!!!)
The only way I for through the three hours was sneaking a Dosit cannabis vape pen in with me and discreetly taking a puff whenever I had to excuse myself to the bathroom.) ?
However, my neurologist has noticed major improvements in my cognitive abilities, whether that is from the elezanumab clinical trial or all the occupational and speech therapy, time will tell.
Great post!! ????
How fantastic that you are seeing improvements! Very exciting. And nice life hack with the vape pen.
Loved reading this. My biggest fear is losing my mind ,already done , or ability to solve simple problems and complete basic tasks. In my job was business analyst communicating with the legal team of large corporation. I recently had a mild cognitive test done at my Neuro psychiatrist and struggled with drawing the face on a clock to represent quarter after 8. I was in tears by time I left. Now regularly have one of my daughters test me with drawing different times throughout the day. Read novels with bit more depth then the romance novels which I pick up for my reward. Yes I remind myself how important it is to challenge myself. Thanks for the article.
Thanks for sharing, Gayle. That sounds scary. Glad to hear it sounds like you’re doing better. And I firmly believe in reading whatever it is that floats your boat! No guilt. Reading is reading! Enjoy.
Great post. The espresso bean hack is genius. Alexa, now has this on her grocery list and on the ‘when packing for a trip’ list. I recently did a math-y test for my ATA188 trial and it was indeed hard.
Start slow with the beans, or you will be wired ?
I haven’t had that test yet, but now I’ll be inquiring about it with my Neuro. My mobility has slowly decreased so I imagine my other faculties are slowly slipping away… I haven’t noticed. I hope not!! I love your blogs because they are not only informative but always freckled with some humor and hard realities.
Thanks for reading, Kelly! Knowledge is power!
This is coming at a very timely moment for me. I am extremely frustrated with my Neurologist as I have been complaining for 2+ years about my cognitive fog that I deal with almost daily or summer, heat, cloudy days, pressure and a pandemic forcing me to work from home. I have tried every pill given to me and supplements out there and nothing.
My breaking point was about 2 weeks ago where I had a full on breakdown on camera in front of my boss. Tears spilling, snot flowing, gasping for breath because I am struggling. I can’t make decisions, handle emails, am distracted worse then a squirrel, stair off into space, can’t read a book, and have to re-read everything I write cuz it’s like a 2 yr old typed it.
My physiotherapist recommend to try Occupational Therapy. I said ok! What is the harm other then my bank account feeling the hit. This shit is expensive and not covered ??♀️
I am signed up for 2 assignments – a Vox Neruo where they put a cap on my head to see how my brain reacts like an EEG thing and then a in person assessment. I am really nervous and should have gotten this done A LONG TIME AGO!!! Then 12 sessions after to help me through this cuz I can’t do this on my own anymore.
I can take the overactive bladder, different size pupils, leg weakness, exhaustion, numbness and tingling, freezing feet and hands, sluggish bowel, balance issues, but this, losing my brain, this is the one thing that is killing me.
Fingers crossed that this works and I am given strategies to kick it’s ass.
Thanks for commenting, Genevieve. It sounds like you have a plan in place. Good for you. There are things we can do to minimize and manage these symptoms, so I am hopeful that you are getting the help that is long overdue. Hang in there.
There’s an app for that. I use something called Elevate. It poses challenges in Reading, Writing, Arithmetic and Speaking. The scores are compared to that of other users (MS status unknown) in your age group, to yield percentiles. My percentiles are 98.24 in Writing, 96.18 in Speaking, 97.45 in Reading and 98.74 in Arithmetic.
Also, I tell my students to develop mnemonics as an aide-memoire. I took lessons in classical guitar when I was twelve in New Zealand. I can still play Greensleeves. I also remember Every Good Boy Deserves Fruit (or Fudge) and FACE. These are the notes on the treble clef.
I really should go back to classical guitar and learn to play Baa Baa Black Sheep.
Current thinking on the brain is that it is made up of circuits comprising interconnected brain cells. Something is stored in a circuit and if something else that is related is stored in another circuit, your chances of remembering both increase.
To remember faces, try to encode not just the face but also a one-word description of the face. I went to school with a guy whose name I forgot, but who I mentally christened ferret-face. I still remember his face – not his name.
Dying to know the description you used to remember my name, Joe.
HA! — “Anise. Like some kind of psychopath.” I love you. I’m certain I have cognitive impairment, but we don’t have anything as evolved as cognitive screening down here. I’m jealous of Canada’s healthcare.
Where are you located? I think that generally this kind of testing isn’t offered. It must be $$$, since it’s so involved. We have to be squeaky wheels in demanding the care we need, even in Canada.
I thoroughly enjoyed reading what U have had 2 share w/ the rest of us, MS Warriors! I’ve had MS 4 the past 19 yrs now. I was crazily smart by the time I got my dx.. This horrid disease has completely snatched my personal future from me, immediately following graduating Summa Cum Laude in 12th grade of high school.
I def tried my hardest 2 excell. Used 2 attend College full time while also working full time. Til the night I was @ work 1 night, & all of a sudden, I couldn’t C 2 drive myself 28 M S, in the dark. Saw eye dr very soon after, in which case MS was immediately mentioned as a probable issue. Come 2 find out, ding, “, “!
Been nothing cept a battle every day, since! I’m fortunate enuff 2 finally have Neuro who is actually listening 2 that which I report, kind of..
Most bragging I can offer? Finally dx w PPMS, which dumbed down/out myself has become has strictly felt truly Has very much been ME! The entire time!!!
Sure hope we can chat sometime.
25 yrs of MS and thoroughly enjoying your article as funny, witty and informative.
I wonder about initiating circumstances for this condition and if there is a common filament amongst us all?
I learn all the time, languages, knitting, bookbinding, pearl stringing jewelry, metal smithing, writing children’s books. So many more interests as well.
There is always more to learn and stimulate our brain, don’t forget meditation!
Thanks to everyone who has commented here, my eyes are opened.
Love ya Ardra. LH
Love you too! So happy to finally know your name!
Even from a mandatory sitting position, “stupid is as stupid does,” I will have a problem with the running part tho.
I had a cognitive test done and she gave me 2 math story problems to figure out in my head. This is something I wasn’t able to do before MS. Let me write it down and I’ve got it. In my head…forget it. I completely bombed that part of the test. Because of my inability to multi-task beyond 2 similar things at the same time, the neurophycologist questioned whether I should still be driving. She did say that I should medically retire because of my cognitive lack of function and short term memory issues. I’m going through that process now, which is severely slowed down because of this plague on the world.
Loved this! “What do tide and music have in common?” Well rhythm, of course!! Don’t our out of the box answers like your alphabet test prove sheer genius ?- I think so. And expresso beans are a favorite hack of mine, too.
P.s.: Because of your bravery, I ordered a souped-up rollator (Porsche is in the name of the manufacturer. Even if it’s not the auto-maker, I feel more chic) and have scheduled my husband and my first post-Dx vacation in St. Augustine. Thank you!!
I loooove this article. Thank u so much for all of it. I know I won’t remember it next week but I love it now.
Also thank you for allowing me to tell the IRS …. sorry I was too F’in tired to do my taxes. ?