The list of symptoms that someone fighting Multiple Sclerosis might encounter is extremely long. Over the years, I’ve written about many of the ones that impact my life. Until today though, I haven’t gone into too much depth about the symptom that has been the scariest to me: cognitive problems. Often referred to as “Cog Fog”, the cognitive problems that I’ve developed because of MS have had a profound impact on my life.
When I was diagnosed back in 2000, I knew I’d probably have some physical issues. I grew up with a grandfather who had MS, so I’d seen what the disease could do. I thought my biggest issue would be that, eventually, I’d no longer be able to walk. Even my first relapse struck my legs, leaving them too numb and too weak to use. It never occurred to me, at the time, that the disease could impact my very ability to think. I went on to college and then a career as a software engineer, the whole time thinking, “Ok, maybe I’ll be in a wheelchair, but I’ll still be able to do my job. I’ll still be able to think clearly.” Turns out, I was wrong.
I’d say my first ten years or so with the disease, I didn’t really have any cognitive issues. Then, I started encountering them sporadically. Problems with remembering things, paying attention, and problem solving. All things that were pretty crucial to my career. I always said, if I could boil my job down to one phrase, it’d be “problem solving”: writing code or directing others to write code to solve problems. When I first started noticing issues, like many would do, I denied it. I blamed it on getting old or other symptoms impacting me. Then, about 13 years after my diagnosis, these problems got dramatically worse. I left work one day thinking it was a relapse of some kind and that I’d be back. That didn’t happen though. I did the IV steroids, saw my neurologist, got tested for cognitive issues, and was told that I was transitioning into Secondary-Progressive MS. I was then told my career as I knew it was over.
What? How? I was only in my mid-30s! I couldn’t and still can’t believe it. My career was what defined me, it’s what I worked for all those years in school. Now it was gone, almost overnight. Except that it wasn’t overnight. You see, relapses may be the most visible moments of MS, but the disease doesn’t stop in between them. Even if you feel great, that doesn’t mean trouble isn’t brewing slowly over time. Tysabri has, so far, been able to slow/halt my progression into Secondary-Progressive MS. Damage is already done, though. There is nothing that will regrow the vital myelin sheath that once protected some of my nerves. The issues that I have are ones that I will always live with.
Short Term Memory Issues
So what am I talking about? Well, I have memory issues. Particularly short-term, but some long-term too. I’m sure many people know what it’s like to walk into a room and not remember why you’re there. Imagine that, but much more often, with everything. I can be watching a show on TV, a commercial will come on and I’ll forget what I was watching. It will come back after the break and I’ll have no idea what’s going on. Same with reading (ugh, I used to so love reading), I can go from one paragraph to another and completely forget what I just read. My memory falls back several pages. I still fight hard to read a lot, but with this issue, in the course of going through a book, I end up going back to re-read pages a lot. Every book is like several books for me now because of this. This same issue can be a problem when having conversations as well. I’ll often forget what we are talking about. Many times, if it’s important, I will look down at my phone, aiming my ear at the person, so I can concentrate. Sometimes I’ll even takes notes on my phone as the conversation is happening to remind me. It looks like I’m not paying attention, but that’s far from the case. I’m also constantly covered in sharpie ink, because I carry one with me to quickly jot notes on my arms. Sounds strange, but it’s effective for me.
Long-Term Memory Issues
While my long-term memory issues are not as common, they are still there. I will often forget things I’ve known my entire life. The PIN for my debit card is one example, even though it hasn’t changed and it should basically be muscle memory punching it in at this point, I’ll often forget it (and of course get a suspicious look from the cashier). I’ve even routinely forgotten how to use simple appliances that I’ve used for ages, like a microwave. Directions are an issue too, I flat out forget how to get places, even if I’ve been going to them my entire life. It’s just one reason why it’s rare that I drive. Other gaps pop up all the time, things I’ve read or watched. I’ve even been unable to come up with my wife’s name on occasion (I’m lucky to have a super understanding wife!). I know the information is in there somewhere, I’m just completely unable to access it. Even knowing it’s there, it’s hard not to feel dumb about it.
Attention and Problem Solving
My attention span has degraded a lot since that one big relapse that pushed me onto disability. My ability to focus is very much hampered. It’s not an issue that I’d ever had in my life, so it’s very confusing for me to get so distracted. This, coupled with problem solving issues, is a big issue for me on a daily basis. Simply trying to figure out and plan my day can become a big struggle. I very much rely on a routineand my wife to get things done, otherwise I can sit for a very long time trying to figure out what to do first. I get confused often now, and being confused so often can be extremely scary. I almost can’t imagine how I did my job before, I seem so far removed from those abilities.
You’ve no doubt heard the phrase “cog fog”. It’s a great one because being in a fog is a good way to describe how we feel. When these issues hit me, I certainly feel like my brain is in a fog and I can’t get out. I’ve said that fatigue can feel like walking through quicksand or wet concrete. Cog fog is similar, but it’s your thoughts, your memories. You can’t think clearly and you can’t seem to get out of it. Just like being in a thick fog, it’s easy to get lost. I feel lost a lot because of these symptoms.
All of these symptoms can make life a bit difficult for me at times. Aside from the types of problems I’ve already mentioned, my cognitive problems have been a huge cause of not only frustration, but depression as well. I often feel like I’m not even me anymore. How can I be me if I no longer think the same way? It also feels like a lifetime of education and professional experience was for nothing. That can be a hard pill to swallow. My cognitive problems, along with being on disability (and those two are related), are my biggest mental hurdles. Like many MS symptoms, these problems are invisible, which is always difficult when trying to make others understand them. This only furthers the sadness that these problems can cause.
So you may be thinking, “well, you do all this writing, how is that possible?” I do, and here’s the thing, I’m not a confused, forgetful mess 100% of the time. Like many symptoms, some moments are worse than others. Things like temperature change, stress, and fatigue can increase my issues. However, I do have glimpses of the old me, and that is when I try to write. Even with those glimpses, my writing can be pretty unpredictable. I may feel well and turn out several articles in a short period of time. But I also have times where one article will be piecemealed together over two or more weeks. I never know when my brain will be working correctly; when it is, I try to take advantage of it. There are still times though, that I think I’m feeling good, but something is off. Because of that, I have my wife look over everything before I submit it to our editors. Sometimes she comes back and basically has to say, “Sorry, this is gibberish”. That’s an important point, because it illustrates that sometimes I don’t even realize I’m having difficulty.
I know this has been a longer article than usual, but thanks for staying with me. This is a topic that means a lot to me. I’ve had a lot of symptoms throughout my battle with MS, but this has been one that has scared me the most. I know others battle these issues too, and so I knew I wanted to cover my experience in depth. It’s important to talk with your MS specialist if you think you are having some cognitive problems. They can test you further and recommend some treatments that help. If you are reading this and you know someone with MS, please don’t assume that your friend or family member is just getting older. Absolutely don’t say that you “forget things too”, I assure you that what they are experiencing is different. I always hope to get good discussion out my posts, so please hit up the comments with your thoughts and experiences!