Learning to manage cognitive impairment with multiple sclerosis

A columnist shares the strategies that help her cope with this symptom

Desiree Lama avatar

by Desiree Lama |

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Upon commencing my undergraduate studies at the University of Texas (UT) at Austin, I pursued a major in prehealth neuroscience. I had decided to pursue this degree shortly after my diagnosis of relapsing-remitting multiple sclerosis in 2016, during my senior year of high school.

My hope in choosing the medical field was to understand multiple sclerosis (MS) from a scientific standpoint while utilizing my personal experiences to help shape future medical practices. However, I didn’t thrive in this field, to say the least.

During my fifth semester at UT Austin, I enrolled in a course titled “Medical Terminology,” where we learned about the Latin and Greek roots of medical and scientific terms. This course relied heavily on memorization, which I’ve always struggled with. After a couple of months, I was forced to reevaluate my educational decisions because my current, rigorous path depended greatly on higher-order thinking.

I soon realized that the medical field wouldn’t be a feasible career path for me because of the cognitive impairments that have resulted from my MS.

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MS cognitive fog is the hardest symptom for me to accept

The invisible struggle

So what is cognition? In simple terms, cognition refers to the mental processes related to acquiring knowledge and comprehension. Many cognitive processes involve our ability to think, reason, perceive, problem-solve, remember, and judge.

According to the Centers for Disease Control and Prevention, cognitive impairment is characterized by issues with memory, processing and learning new information, decision-making, and concentration, and can range from mild to severe. These issues are common among people with MS, with cognitive dysfunction affecting more than half of patients.

Of the cognitive functions that can be disrupted by MS, I’ve had the most problems with my memory and information processing. More often than not, I’m unable to recall pieces of information and can’t contribute to conversations because of deficits in my cognitive processing abilities. When a lot of information is thrown my way, it becomes overwhelming because my brain can’t keep up.

Because cognitive impairment generally isn’t visible, it can become quite burdensome and mentally exhausting to explain these issues to the people around me. Engaging in discussions about my cognitive limitations can pose challenges, yet it’s essential for fostering a deeper understanding of who I am. My inability to recall a piece of information is not indicative of me not listening or caring; my brain simply works differently from most.

Managing cognitive function

Over the years, I have implemented different strategies into my daily routine to help me manage cognitive dysfunction, such as doing puzzles, reading, writing information down, and utilizing online calendars. All of these strategies are beneficial in various ways.

Puzzles and reading keep my brain active even during downtime, which has been especially important during breaks between school semesters. Writing information down on my phone or in a journal gives me something to refer back to when my memory is lacking. Lastly, using online calendars helps me plan and organize my days. The ways we manage cognitive challenges are personal and unique to each of us.

Throughout our MS journeys, we may have to reconsider different aspects of our lives, such as our careers, to accommodate changes in our health. Some of these decisions may pose deep emotional or psychological challenges, but we must remind ourselves that we shouldn’t sacrifice our well-being for the sake of others. All we can do is what we are capable of doing.

If you experience cognitive impairment with MS, do you have any strategies that help you? Please share in the comments below.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Anikó Nánai avatar

Anikó Nánai

In my language ( Hungarian ) there is a proverb: IF YOUR BRAIN IS NOT LONG ENOUH, YOU SHOUD HAVE A NOTEBOOK IN YOU POCKET.

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Rosario De Soto avatar

Rosario De Soto

That is so right!!!!
I have MS since 2013

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Desiree Lama avatar

Desiree Lama

I definitely always have a notebook on me!

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Jeffrey Gingold avatar

Jeffrey Gingold

For an understanding from inside the MS mental twister, please check out "Facing the Cognitive Challenges of Multiple Sclerosis," 2nd Edition. All royalties are directly donated to MS education and research. 100%

Stay sharp and strong,
Jeffrey

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Angela Stogner avatar

Angela Stogner

Nice to see a comment from you, Jeffrey. When I was diagnosed in 2010, your book was the only resource I could find that addressed cognitive issues at all. As a third grade teacher and recent PhD graduate, I was most worried about losing my cognitive abilities. Your book showed me that although I might not be able to function well in a university professor position I still would be able to teach which I did successfully for the next 20 years.

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Desiree Lama avatar

Desiree Lama

Thank you for sharing this resource, I will definitely look into it.

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Robin L Miller avatar

Robin L Miller

Exercise and walking outdoors helps me a lot. My neurologist prescribed methylphenidate (Ritalin) 5 mg. which helps immensely. This is the drug which has been used to treat ADHD in kids for decades. Some psychiatrists are using it for depression. It is safe and effective but there is concern for abuse and dependency, which is rare when used for severe medical conditions like ADHD and MS. I don't understand why more neurologists don't use this. I was also in the medical field and had to quit because of cognitive issues. If I had been given this drug then, I think I could have worked longer.

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Desiree Lama avatar

Desiree Lama

I have encountered instances where my doctors would rather me exercise other strategies than give me medication but sometimes it is necessary.

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Cecilia Mihaylo avatar

Cecilia Mihaylo

I was diagnosed over 20 years ago, I have been extremely lucky, since my disability is minimal. One of my neurologists, now retired, has the theory that it is my job as a court interpreter (it is said that simultaneous interpreter is the equivalent to brain gymnastics at Olympic level) what has kept me from further disability. I know that my cognitive function suffers when I’m tired, I have experienced a few episodes of “MS Tired” and I have not been able to decide what to have for dinner, my disability goes up and down according to my overall state of health. I have been prescribed Ritalin in a very low dosis, and it seems to help with my ability to stay alert. Through the years I have by trial and error what works and does not work for me. Exercise on the form of leisure walks make a difference, heavy exercising makes my symptoms worse. I’m convinced that MS is not ONE illness, but many who have been thrown in the one box. Since everyone’s symthoms seem to be so different from others I believe that each one needs to find out what works for them personally.
Cmihaylo

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Ra avatar

Ra

I am about halfway through Goal Management Training with a speech pathologist. It helps you to be more present minded. I now have a new mantra, "complete the mission" that I repeat to myself when walking somewhere with a task in mind as without that mantra I forget what I was supposed to do. Not all speech pathologists are trained in GMT so you may need to do some searching.

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Desiree Lama avatar

Desiree Lama

I will have to look into this, thank you for sharing! I always find myself wandering around because I forget what I am doing. Wishing you the best of luck on your journey 🧡

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Patreesha Poole avatar

Patreesha Poole

Thanks for an interesting article, I’d say poor cognitive function is my second worst symptom, before mobility and after fatigue. I’m conducting a small experiment with myself atm by replacing my usual video games with a crossword, been doing it for a week; the conclusion I have come to is that my cognition is affected by fatigue more and more. When I was first diagnosed back in 2016 my memory was probably the worst affected, as I recall (sorry, unintentional joke!), and played a large part in my decision to take early retirement based on incapacity. Now, if I’m very tired I am literally wordless in that I simply cannot put a phrase together, I can’t make decisions, I can’t remember the beginning of a sentence I’ve just started, and recall is nigh on impossible. When my fatigue is bad nothing helps; one thing I I have learned to do is to shut down for a while to ride out the storm.
Something that has helped me to hold back the tide of fast disappearing cognition is my volunteer post as a PPI (public and patient involvement) rep for the UK MS Society, undertaking complex tasks such as lay reviewing grant applications. I do take longer to complete those tasks week by week but because it’s the MS A Society they have to put their money where their mouth is and allow me extra time. That’s just one example - another might be forgetting I was writing this comment and then surprising myself when I came across it when closing my phone down at night. This comment is just about the limit of my capability when becoming fatigued. I know that I have strategies (one is googling words I forget, or asking my AI chatbot friend), but I can’t remember what they are! As a very good friend who is chronically ill says, it’s all very well making lists etc but you have to remember to do these, and then you have to remember to remember!
Thanks again for an interesting article.

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Desiree Lama avatar

Desiree Lama

Thank you for sharing! I find myself wordless more often than not. Sometimes I don't even really know what I am saying because it is a bunch of word mashed potatoes. I think that I why I enjoy writing so much! I have time to sit, think and formulate what I want to say. Thank you for reading 🧡

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Dawn avatar

Dawn

Thank you for this! This provided me with the guide to share with family and friends. You came up with the words I could not find either spoken or written. Thank you. 🙌🏼🙏🏻🧡💚

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Desiree Lama avatar

Desiree Lama

Thank YOU for reading! Sending you my very best! 🧡

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Jean Clelland avatar

Jean Clelland

Should people with MS be vegan?
There are multiple mechanisms by which a whole foods, plant-based diet could be beneficial for preventing and treating MS including changing the gut microbiome and the immune system, decreasing oxidative stress and inflammation and increasing blood flow around the body, including to the brain.Oct 25, 2017

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Desiree Lama avatar

Desiree Lama

That is a great question! Personally, I try to avoid red meats and processed foods because they make me feel so yucky!

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Timothy Carter avatar

Timothy Carter

Knowing the prevalence of fatigue and cognitive challenges for people with MS, why in the world do doctors prescribe medications that also cause fatigue and cognitive impairment?? I also wonder if MS patients have a greater occurrence of Alzheimer’s disease? And, do certain medications play a role in this?

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Desiree Lama avatar

Desiree Lama

Sometimes the symptoms I experience are a result of medications and not my MS which is extremely frustrating! I also do wonder the same about Alzheimer's disease. That is why I try to keep my brain as active as I can without causing added strain. All to prevent a faster cognitive decline.

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DR ISABELLE SWANEPOEL avatar

DR ISABELLE SWANEPOEL

Thank you for sharing the engraving information. I was diagnosed in 2004 when I was 29 years old. I only have three relapses and am now 48. I also did my PhD in MS. We are brave and strong-willed souls!!

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Desiree Lama avatar

Desiree Lama

Thank you for sharing! We sure are! 🧡

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