a woman laying on her stomach on the couch tossing her book in frustration

Cognitive Dysfunction: When Reading Becomes A Chore

The symptoms that go along with cognitive dysfunction because of Multiple Sclerosis are areas that I talk about a lot. The cognitive problems that have hit me in the years since my diagnosis have had a severe impact on my life. These problems even partially contributed to me being forced onto disability. Today, I want to dive deeper into one of the areas that my cognitive changes have affected. One way that my cognitive impairment has drastically impacted me is in my ability to read.

Reading was always important to me

Even as a child, reading was something that was very important to me. I was a pretty active kid, but always managed to squeeze in some reading time. I was (OK, I still am) someone with a pretty active imagination. Reading really helped to fuel that imagination and was a great source of enjoyment for me (I may be showing my age a bit, but I grew up in a time without smartphones and tablets to occupy my spare time). Even as I got older and had to read a lot for school, and later, for my profession, I still tried to always have something I was reading for pleasure. My parents were always reading and finding time in their busy schedules to pick up a book, I’m sure that had a pretty positive impact on me and helped me realize that you can always find time to read. Not to toot my own horn, but I was a pretty good reader too, a fast reader who remembered whatever I read. (In a fun side note, I once took the top prize in a Read-A-Thon for MS, I was pumped for it because my grandfather had MS. I never imagined at the time that I would some day get the disease too).

Then things went off the rails

It wasn’t until around 15 years or so after being diagnosed that I really started to notice my cognitive issues. That’s when they really began to impact my professional life. Of which, reading was a pretty big part. As a software engineer, not only was reading constantly required to do my job, it was really necessary outside of it too. Technology is constantly changing, and to be effective, you really have to keep up on it, outside of work. The same issues that affect my ability to read also affected my ability to write code and operate effectively in my position.

So what happened to me? I’ll talk in the present, because most of those issues that happened then persist to today. Well, being able to focus is certainly part of it. Literally being able to follow along in a book, is, at times, a challenge. Being able to follow a sentence, with other words on the page, can be almost impossible for me on a bad day. I will get distracted by other words and jumble them together. Outside stimuli can easily distract me too, which is a far cry from when I would read while commuting to work on a busy subway. Issues with my memory may be some of the biggest problems that I have, particularly with regards to my short term memory. No matter how focused I am, I will immediately forget what I have just read. This can happen from page to page, paragraph to paragraph, and even sentence to sentence and it’s just awful.

The impact

To me, it’s incredibly scary that I can read and comprehend (though there are days where comprehension problems are also bad, there are days where I can read something, remember it, but have zero understanding) something and then, in the blink of the eye, forget it. I was in my mid 30s when these issues struck me and they’ve been with me since. While it obviously affected my career, it’s also been incredibly difficult to deal with on a personal level. The joy of reading was gone (I must mention though, these same issues affect more than reading. Even watching television can be a challenge at times, particularly if there is a scene change or commercial break). Simple tasks, like reading instructions, have also become much more difficult.

I also never expected these kind of changes. My grandfather lost most of his mobility, even required a ventilator at one point, but he always still seemed there, he knew what was going on. When I was diagnosed, the idea that I might encounter cognitive problems wasn’t really discussed. Even today, I think it’s something that they still are struggling to understand. I really did think, “oh, I might be in a wheelchair, but I can still think clearly, I can still do a technical job somehow”. That’s not the case though.

Adapting

Despite these issues, I’ve been determined, for the past year, to still read for pleasure. Like many things with MS, I’ve had to put aside my pride and put aside the expectation that I will be as good at it as I once was. I typically use an index card to keep the sentence I am reading underlined and the words below it covered. I tend to require the room to be quieter than I ever did before. I also re-read. A lot. I’ll finish a page and have no idea what it was about, so I will stop, and read it again. I admit, there are days where this process can be incredibly frustrating and will end with the book thrown across the room. Sometimes, I think by the time I’ve finished a book, I’ve actually read it three to four times just through all the re-reading I do. I tell you this though, when I finish a book, it feels amazing, it’s an accomplishment, one I used to take for granted.

Like most things with MS, I have a lot of ups and downs, good moments and bad moments. There are days (even hours, particularly in the morning) when these issues don’t affect me too much. I take advantage of those times and read more. The same with the writing I do, I need to be “on” in order to write. Even when I feel like my brain is working a bit better than normal, I’ll “warm up” by building some LEGOs, which helps me get focused a bit. When I’m on, I can really be on, and I’ll churn out several articles at once, sometimes at a frantic pace (fearful of the next dip in the roller coaster of my life with MS). One interesting thing about that, because I write these pieces and submit them and they get used when my editors deem fit (this isn’t like a blog where I just write what I want and bam, it’s out there), I will often completely forget about things that I’ve written. Months down the line, I’ll see it get published and need to re-read it in order to help answer comments. It can be a pretty weird feeling to see something you’ve written published and not have any recollection of it. I guess the point here is that with MS, there will always be moments that are better than others, and it’s important to take advantage of those moments.

Moving forward

Having my ability to read get altered because of my disease has been a tough thing to cope with. However, it’s a battle I will keep fighting. I will keep reading and working my brain, no matter how long it takes to finish books. I encourage everyone to do that. Exercising our minds is every bit as important as other forms of physical therapy.

Thanks for reading!
Devin

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