I Wasn’t Prepared for the Way Cognitive Issues from MS Would Change My Life

I expected to lose some of my physical abilities, but I never anticipated that cognitive dysfunction would force me to give up my career.

When I was diagnosed with multiple sclerosis (MS), I thought I had a pretty good idea of what the disease could do to me.

Early on, I had a lot of mobility issues. My legs would become weak, numb, or simply stop responding to what I wanted them to do.

Eventually, I started having some issues with my hands and arms, too. That made sense with what I knew about the condition. My grandfather has MS, too, and I witnessed him lose his ability to walk and talk. However, his mind was still sharp.

I assumed my MS would continue along the same path, impacting the ways I physically interacted with the world around me.

I was incorrect. I’d go on to learn that MS can affect much more than the way our bodies can move — it can also impact our cognitive abilities.

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I was prepared for the physical side effects

Back when I was diagnosed, I’d assumed my body would start to fail me. I figured I’d continue to have mobility issues and probably end up in a wheelchair at some point.

This wasn’t solely based on what I had seen with my grandfather — it was the knowledge that doctors gave me at the time. It was also in the many pamphlets I was given to read.

I pressed on and continued my studies in software development, thinking that I would still be able to have a decent career and provide for myself, even if I needed a mobility aid.

From what I gathered, using my brain to make a living would be a good way to extend my career, even if the rest of my body started failing.

All according to plan

This line of thinking would seem to prove itself, too. Early in my career, I had several exacerbations. One made walking difficult again, one made my entire right side numb, and one even made my hands numb and mostly unusable.

In most cases, I was able to return to work while still having difficulties in these areas. I definitely worked with some great people that made this possible, folks that would pick me up and take me to work and even help me get around.

In all those cases, even if I couldn’t really type or work at a computer, I was able to contribute. I could discuss the problems and solutions of software development, even though I couldn’t physically code anything.

I was still an asset, still able to make a difference, still adding value despite the physical aspects of my body failing me.

As I recovered from the various exacerbations, I was right back to normal and really able to hit the ground running because my mind had still been in it. I guess in some ways, it was all going according to plan.

The best-laid plans

My life continued along that relapsing-remitting path for a while. I would have an exacerbation, usually something related to my physical abilities, and I would recover.

My career went very well for a while, too. I moved around the country for it, held senior positions, and managed and mentored others.

Then I had an exacerbation, seemingly triggered by an infection, that changed things. Cognitively, I was different. I felt like I wasn’t as sharp as I once was.

I chalked this up to either aging (I was in my mid-30s) or stress (I’d moved across the country recently, and my new location brought intense levels of stress to my personal life). I was still good at my job, but I definitely felt different. It went this way for a few years, during which time I had even switched companies.

While I wasn’t as sharp as I once was, I was still successful and a valued asset, until over the course of a few weeks when things changed. I began having trouble paying attention. I’d be working on something and become easily distracted, something that was uncommon for me.

In addition to that, I started forgetting things. Sometimes, I’d forget something I’d known for years. Many other times, I would forget what I had just learned. I’d be reading a report and suddenly realize I had no idea what the previous paragraph had said, despite just reading it.

I also started getting confused a lot. I remember several times when I would be sitting at my desk and have this realization that I had no idea where I was or what I was doing.

Additionally, I started to have trouble figuring things out. My whole career was based around figuring out solutions to problems and, suddenly, I really struggled with that. I felt like I was trying to think through a fog or like my thoughts were trying to make their way through thick and gooey mud.

That was it

One day, I realized these issues had gotten the better of me. I was at my desk, and it finally dawned on me that something was really not right with me. I told my boss I needed to talk, went to his office, and explained what was happening.

I had a member of my team join us as well and she admitted that work I’d done over the past few months looked nothing like my work before it. It was as if a completely different person had done it.

I left work that day thinking that maybe this was a normal exacerbation and that I’d be back. I was wrong. I never made it back.

I saw my neurologist and I went through all kinds of typical MS tests, as well as tests to determine my cognitive abilities. I was a mess. This wasn’t an issue of one exacerbation causing problems, this was damage built up over time.

I’ll never forget my doctor looking at me, telling me I’d put up a good fight over the years, but that it was time to go on disability. This wasn’t supposed to happen. It was devastating.

‘Cog fog’ is common

I learned the hard way that MS can impact a person’s cognitive abilities. About 40 to 65 percent of people with MS experience some sort of cognitive problems.

Difficulty with finding words, concentrating, decision making, information processing, attention, and memory — sometimes referred to as cog fog — are all examples of ways that MS can have an impact on one’s cognition.

Like any MS symptom, the severity varies from person to person. This is pretty much common knowledge now, but it wasn’t when I was diagnosed. I definitely didn’t read anything about this in the pamphlets I was given.

Everyday challenges

I’ve never been able to return to my career, though I still believe anything is possible.

I’ve worked hard at exercising my cognitive abilities. I’ve gone to cognitive rehabilitation, and I also routinely work with puzzles and memory games.

I’ve even taken to working with LEGO sets to help keep my brain as sharp as I can. I also do things like planning out my day way in advance and relying on reminders and lists as much as I possibly can.

Despite all that work, I still have difficulties. Problem-solving and short-term memory are areas where I struggle a bit every single day. That said, I do have moments of clarity — times when I feel like everything is firing on all cylinders — but it’s never consistent.

I can’t predict when or for how long my thinking might be impaired. While some factors, like stress or temperature changes, can have a negative impact that I can predict, there are other times when it feels as if there is no rhyme or reason to how my brain is behaving. That’s left me out of work.

I also barely ever drive now because of these issues (and the several close calls I experienced because of them). Even the small things in life have been affected. Sometimes, just trying to relax and watch something on TV is difficult because I will get confused and forget what just happened minutes before.

You can imagine all the sorts of other issues that pop up when trying to live alone while suffering from confusion and memory loss and knowing that you can’t necessarily trust your thoughts.

My cognitive problems have also affected the relationships in my life. These problems are invisible to people, which is extremely frustrating. I may look fine to most people, but then I talk and sound inebriated or like I make no sense.

I have trouble following conversations, which sometimes makes me look disinterested or like I’m not paying attention. I forget to get back to people or believe that I have when I never actually did.

I’ll often forget what people tell me and have to ask them to constantly repeat things they’ve already said over and over again. Sometimes, all of this becomes incredibly disheartening and makes me give up for a bit.

You are not alone

MS is a lonely condition and I attribute some of that to the cognitive issues I experience.

If you can relate, know that while it may feel lonely, you are not alone. As the statistics show, there are so many of us out there experiencing the same thing. Sometimes, it helps to just talk about it.

Article originally appeared on September 30, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on September 30, 2021.