“When you go to the store could you pick up some eggs, spaghetti noodles, and lettuce?” my wife asks. I’m looking right at her. I hear her. I understand every word she says and, in a millisecond, most of the sentence is gone from my mind. Almost every word boiled off like drops of water on a hot pan. “Store” and “eggs” held on, but all the rest are gone. She sees the look on my face. We don’t need words anymore because it happens so often. “I’m sorry,” I say with some embarrassment, “what did you need me to get at the store?”
I often think of Kevin Kline’s character Otto in one of my favorite movies of all time; the comedic heist A Fish Called Wanda. Throughout the movie every time someone says a list of things to him, Otto comes back with, “what was the middle thing?” A phrase couldn’t better summarize my struggle with the cognitive problems in MS.
Careful–That Could Start A Fire!
According to the National MS Society, “cognitive” means of or relating to “cognition”. Cognition refers to all of your high-level brain functions that enable a person to learn, remember, plan, problem-solve, and focus their attention in everyday life. It is what makes it possible for you call up Domino’s and order a pizza while you are, at the same time, perusing the instructions for putting together an end table from Ikea, and explaining to your crying six-year-old that she is just as much to blame for her older brother tackling her because she because she kept throwing a shoe at him. This sounds like complete chaos, but, for most of us, it is normal everyday life.
Over half of all people with multiple sclerosis are affected by cognitive problems. Just like physical problems, problems with cognition are a result of the damage that MS does to the central nervous system (CNS). Nerve cells that carry information are damaged and the speed and accuracy of the information is reduced. It’s like having a lamp with a cord that is damaged. The electrical connection is screwed up–sometimes the light works, sometimes it doesn’t, sometimes it flickers, sometimes it’s dim, and it might just start an electrical fire if not attended to. Except for the electrical fire, I think that’s a pretty good analogy for how MS affects a person.
Here are some common cognitive problems that affect people with MS:
- Information processing (dealing with information gathered by the five senses)
- Memory (acquiring, retaining and retrieving new information)
- Attention and concentration (particularly divided attention)
- Executive functions (planning and prioritizing)
- Visuospatial functions (visual perception and constructional abilities)
- Verbal fluency (word-finding)
Cognitive changes, like anything else in MS, affect everyone differently. They do correlate with the number of lesions in the brain as well as brain atrophy. Cognitive changes usually progress slowly and are unlikely to improve once they have begun.
Potentially, cognitive changes can have a significant impact on a person’s family and work life. Often they can be misunderstood and result in frustration and confusion.
Talk On The Phone? Impossible!
As I mentioned in the opening to this article, I have my own issues, but for the sake of this article, I will only focus on my cognitive issues and leave my mommy issues for my therapist. They are not debilitating. I still work full time in an engaging job and I am active in my own family, but, when my brain does go to shit, it is no less frustrating. Even more irritating is that it is not consistent. Like a free-spirit it comes and goes as it pleases. It is maddening that I think, I’m on it, and then, suddenly, everything breaks down before I even realize what’s happening and I get stuck in the idiot zone.
I have problems with information processing. Sometimes keeping up with a simple conversation with one of my kids is like what I think trying to keep up with the fast-talking legalese at the end of an investment ad would be like if I was inclined. It’s just too fast and, eventually, my brain feels like it’s been run over by a truck as my daughter tells me about making pinch pots in art class. I also have memory problems. There are many times at work that I have had the simplest conversation with someone and, as soon as they walk away, I’m muttering to myself, what the hell did we just talk about?
Multitasking has never been my thing. I have never been someone who had a great capacity to do a lot of things at once. Thanks to MS I’ve become even worse at it–and I didn’t think I could get any worse! A phone conversation with music or the television in the background? Impossible! I often find myself completely overwhelmed with the everyday background noise in our home. It sets in like a fog and I am completely out of it. I often don’t realize when people are talking to me or I take an extra second to respond to them.
Oh, and then there’s speaking in general. I’m not so good at that either. I have trouble finding words. I pause a lot more than I used to because I’m stumped on what words to use to express myself.
Frustration, Anger, and Sadness
Again, I have to stress that these things don’t happen all the time. They are intermittent. Yet, all of the things above find their way into my life often enough to cause anger and frustration. Along with frustration and anger, there is a lot of sadness in all of this. I don’t have a lot of confidence in my mental abilities anymore. I question myself all of the time. I’m much more quiet than I used to be. This is primarily out of fear that I might be wrong about something or choose the wrong word. I feel an immense amount of guilt for not doing my share. Worried about being a burden on my family, I often feel desperate to compensate for my shortcomings and disappointed when I am not able to.
It isn’t easy on our marriage. It is very frustrating for my wife. She is so patient, but even she has her limits. No one likes to have to repeat themselves as much as she has to. No one in a marriage wants to be the one in charge all the time.
This is hard on our kids. I don’t think any of this is invisible to them even though we don’t talk about it. I worry a lot that they think I’m ignoring them when I don’t hear them. And, because I don’t have control over it, I can’t do anything about it.
At work it’s getting harder to stay on top of things. I make a lot of small mistakes if I don’t double check myself. I have a hard time staying organized both physically and in my own head.
Ways to Deal
I’m sure that I am not a good example of how a person should deal with this. I am not a model MS patient in any respect. But there are a few things that I have tried to do and have found helpful:
Admit there is a problem
Thanks to Alcoholics Anonymous the concept that admitting there is a problem is the first step to solving it is common knowledge. This is applicable in many areas in life, not just addiction recovery. Make it applicable to your cognitive problems.
I’m not saying to shout “I’m a little stupider now!” from the rooftops for everyone in the world to hear. I am saying a good place to start is admitting to yourself that you have some very real challenges to whatever extent they exist. I’ve found this to be difficult myself, but, once I put aside my pride and got real about what was going on, it opened up a world of opportunities to better manage this aspect of my disease.
Once you’ve admitted to yourself that this is a thing you can begin to communicate this to your loved ones, people in your support network, and your treatment team. If the people that matter are aware of what’s going on they are in a better position to help you and you are in a better position to ask for help. It’s embarrassing and it’s one more thing to add to the “what’s wrong with me list”, but its better for everyone to face it up front.
Get your emotional shit together
Aside from actual disease activity, major contributors to cognitive problems for anyone, not just people with MS, are emotional issues such as depression, anxiety, and stress. It’s hard to tell where MS ends and depression begins, but if you can find ways to reduce stress and manage depression and anxiety it can only help in mitigating cognitive problems.
Whether it’s medication, therapy, meditation, exercise, massages, or getting laid–just do it. Find a way to get yourself in a better place and your mind just might follow or at least try to keep up. It might not be the same thing every day, but it can me something every day. Experiment and see what works for you and do what you can whenever you can to keep your emotions healthy.
Write it down
Record everything and I mean everything. Write it down, put it in your phone, take a picture, whatever it takes. Get things out of your mind and into something else before they give your the finger and run away. If you have problems with memory stop pretending that you don’t and miss important appointments or events. Don’t assume that, just because you feel good at the time, you will remember it later. We are living in an age where, even the cheapest digital devices, have the capabilities of a basic calendar and setting reminders for important things that you don’t want to forget. Take advantage of common technology.
Those are a few things that I’m working on, but there is a lot more I could be doing. This brochure from the National MS Society is an excellent resource for understanding and managing cognitive problems.
Feel free to share your experiences and strategies for dealing with cognitive problems in the comments. I would love to hear from you.