Month: January 2021

What You Need To Know About MS Cognitive Dysfunction

Silhouette of a head in profile with images of turning wheels leaving the back of the head. A creative imagining of what our cognitive function looks like.
Cog fog, who dis?

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. 

A woman with MS stands without the help of a mobility aid. She is wearing a safety harness.
Look Ma, no rollator!

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).

A melted pepper grinder that was absentmindedly left on the stove. MS cognitive dysfunction can cause memory loss or distraction.
MS made me do it.

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.

A woman lifts up her sweater to reveal a McGill T-shirt that she wore to remind herself that despite having some MS-related cognitive dysfunction she is still able to learn.
William Shatner and I both dropped out, but only one of us got a building named after them, so I went back.

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. 

Fuck you, Troy.

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. 

A list of words that start with F that are related to MS. These are words that could be used in a cognitive function test if given the letter F.
FTS. I know plenty of ‘F’ words.

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. 

A crude drawing of a condo building that underscores the author's weakness in one section of the MS cognitive dysfunction test.
My rendering of the condo where I live. I hope I haven’t given away too much detail to any would-be stalkers.

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. 

Keep learning

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”. 

A woman smiles over a Scrabble board. The word "bruises" is circled as a nod to how MS can lead to bruises.
“Bruises” for the win.

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? 

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Why I Won’t Wish You A Happy New Year This Year

A clock is about to strike 2021 a ring in the new year. Text says "Happy?", to indicate the bizarre pressure to have a happy new year in the middle of a pandemic.

Why I Won’t Wish You A Happy New Year This Year

I get it. Most of us want to say a big fuck you to 2020.

A bear waving good-bye to 2020 as we all feel the pressure to have a happy new year in 2021.
Bye, bitch.

Others got a puppy, and it wasn’t the worst year of their lives.

A white woman in a yellow dress sits on a bench next to her golden-doodle puppy. An example of joy during difficult times. You don't have to wait for the pressure to have a happy new year to be happy.
You don’t have to feel guilty about finding joy during difficult times.

2020 wasn’t the year any of us expected, and maybe that’s the lesson. Maybe we need to say fuck you to our expectations and the idea that we have as much control as we think we do.

“Disappointment requires adequate planning.” –Richard Bandler

I’m probably preaching to the choir, because part of the gut-punch of an MS diagnosis is getting over the expectation of how you thought the rest of your life was going to be (not just the next year), and then figuring out how to pivot, and reinvent, and live your best life anyway. My life with MS is hard. Full stop. But, one of the best surprises of the past 20 years was discovering how much joy MS wasn’t able to steal from me.

A white woman wearing a grey sweater dress and knee-high boots stands on a sidewalk covered in leaves. She is using a stylish rollator from byAcre. She is smiling.
Surprise! I like my life!

Living without expectations

Living without expectations means being open-minded; being receptive to uncertainty, surprise, and wonder. It means going with the flow. Shit is going to happen whether we like it or not. Life is easier when decide we can roll with it, rather than be rolled over by it.

For me, living without expectations means making an effort to believe that, despite MS, all my best days aren’t behind me.

As much as most of us want 2020 to die already, remember that we all wanted to torch 2019 too. Even in the best of times, we don’t always recognize what’s good about our lives until it’s missing. As we flip the calendar and embrace a fresh start, the sobering reality is that in 2021 the proverbial slate won’t be wiped clean. The worst of what 2020 wrought isn’t over.

A calendar of wooden blocks marks the transition from 2020 to 2021 as we feel the pressure to have a happy new year, the blocks underscore that nothing much has changed
Same old shit.

The pressure to have a happy new year

I’m not convinced we’ve earned our 2021, but time marches on whether we’re ready or not. Yes, there is light ahead (way ahead), but there’s still hard work to do. There will be more restrictions, more confinement, more death well into 2021.

Wake me when it’s over

The possibility of impossible things

Nobody could have predicted what happened in 2020 (okay, Bill Gates, kinda predicted it). 2020 was a startling reminder that the unimaginable is possible. And if you don’t trust Gates and his doomsday prophecies, why not listen to an even bigger nerd–like 17th century super-scientist Sir Isaac Newton. This dude LIVED THROUGH BUBONIC PLAGUE, and proved that for every action, there’s an equal and opposite reaction. Ergo, if a bunch of catastrophic, earth-shattering shit can go down, it must also be true that some wildly positive, if equally unfathomable things are possible.

According to Newton, we must accept the prospect that dogs can talk, Miss Vickie’s chips cure hiccups, Mindy Kaling and I are besties, and everything’s free at Sephora on my birthday. That’s science.

I won’t wish you a happy new year

I’m heading into 2021 embracing uncertainty and being open to possibility, without succumbing to the pressure to have a happy new year. I mean, the bar is pretty low for 2021 to impress me; but, who am I to say that I know my future and that it gets worse or better? The only plans I’m interested in making right now are little ones. Which book I’ll read next, what kind of cocktail I’ll sip tonight, which track pants I’ll wear to the living room. (Spoiler: the ones I slept in.) There’s something liberating about not having to think about a 5-year plan, or even a 5-month plan right now.

On the left, two sidecar cocktails sit on a table in front of a Christmas tree. On the right we see two Manhattan cocktails.
Sidecar or Manhattan? Why not both! It’s End Times!

The lesson of 2020 is one that those of us with MS already know: we can do hard things. As we move into 2021, let us think about the little things we can influence like our outlook and our efforts to keep each other safe. Wear a mask. Wash your hands. Find joy in small things.

This guy gets it.

The pressure to have a ‘happy ’ new year feels a little ambitious right now, and even a little weird to say in the middle of a global pandemic. So, instead, I wish you a peaceful, safe, and healing new year; a 2021 that leaves room for the possibility of wonderful things we haven’t even imagined yet. Let’s hunker down and get cozy; it’s going to be a long winter.

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