They were all staring at me, every last one of them. My coworkers and I sat around on the table at the meeting, and they were waiting for me to speak. And I was waiting for the words to be filtered down from my brain. But they never came. It was like I had been wiped clean, a blank slate. I knew the information was there, somewhere, why wasn’t it where I needed it to be? I searched my brain again. Nothing. The only thought that eventually came was
‘Isn’t this what nightmares are made of?
Approximately half of all people who have MS will have cognitive dysfunction, or possibly more, if it goes unreported. Cognitive dysfunction is felt differently by each individual, what one person finds as a mild impairment, might render another unable to work. Cognitive issues can include trouble with memory and recall, attention, concentration, information processing and word recall among others as well. It is often listed as a “mild” to “moderate” impairment, however it doesn’t feel that way. Lets look closer at some of these specifics.
Short Term Memory and Recall
This is one of the most frequently reported cognitive issues in the MS community. Issues with short term memory often looks like walking into a room and forgetting why you went in there in the first place. Not remembering if you took your morning pills or not (one I struggle with often). Some times you may even repeat stories, or sentences, thinking you haven’t mentioned it, but in reality, you told it several times (another personal struggle).
Recall of information can also be inhibited. There have been several studies that have suggested that individuals with MS are capable of learning and storing of information just fine but have trouble recalling the information when needed (like duh). However, one article I read gave another answer to this issue. This article states that individuals with MS need a longer time to learn the new information from the start. When given adequate time to learn the information, recall of the information is the same as individuals without MS. This suggests that the issue lies in learning, not recall. Perhaps instead of memory and recall being our number one cognitive issue, it is really attention and processing! A new area of study, for sure!
Attention and Concentration
As I noted above, attention is something that people with MS struggle with greatly, probably more than we think as well. Staying on task can be difficult at times for non-MSers, but for us, it is a struggle all the time for sure. Staying on task at work, during conversations or while trying to follow directions (cooking anyone?) can be tough. Add in background noise or multiple conversations going on at once, and forget about it! And multi-tasking? Yikes! That is something of days gone by. I used be able to carry on a conversation while I “mindlessly” did another task. Not anymore.
Slower Speed of Information Processing
This includes all of the symptoms I listed above, but it also means that our brains struggle to take in and prioritize the information that we are receiving. This can show up as issues with processing spoken language, sensory and spatial information or abstract ideas such as social cues. In one study I read about, individuals with MS were able to preform well on cognitive tests, they just did so at much slower speeds as compared to their non-MS peers.
Verbal Fluency- Word Recall
Verbal fluency, or otherwise called issues with word recall, in my opinion, are one of the most frustrating cognitive symptoms. This is defined as the “tip-of-your-tongue” phenomenon. When the word you’re trying to think of is in your vocabulary, but it has escaped you for a moment. It can happen at a moments notice and can bring a sentence to a dead halt. You can even be looking at the object you’re trying to say the name of! And still nothing.
Why does Cognitive Dysfunction Happen?
Cognitive issues are generally caused by damage in the brain. Studies have shown that lesions in the cerebral hemisphere and damage within the gray matter are most significant when measuring cognitive dysfunction. It also seems that cognitive dysfunction is more prevalent in primary progressive MS then relapsing remitting MS, however anyone at any time in their disease can experience cognitive symptoms. Cognitive symptoms can also be temporarily made worse during other times such as during a pseudo-exacerbation, when in the heat, when fatigued or during a depressive state.
Ways to Manage Cognitive Dysfunction
There are many ways to manage cognitive problems. First and foremost, give yourself some grace and compassion. Dealing with MS in general is not easy, then beating yourself up about forgetting something at the store, or forgetting a task around the house, is not going to help. Symptoms thrive on stress, so making sure we are being as kind to ourselves as possible is important.
Second, (I give this advice often) start to be aware of yourself and your symptoms. Learn what specifically makes your cognitive issues better or worse. Maybe working with music on once was doable, but now not so much? Or you were once an auditory learner, but now you need more support? Really take some time and figure it out for yourself, it’s worth it.
Third, there are ways to “exercise your brain” and improve your cognitive abilities and these include memory and attention games. There are also other things you can do including improving organizational systems, alarms, planning and taking the time to really learn subjects. Doing the most demanding tasks when you are most awake is also a good idea.
I’ve struggled with cognitive issues for many years. Although I would categorize them as “mild”, I still think they have a rather large impact on my life, and my quality of life. The main things I struggle with are memory, recall and word recall. One of my biggest strategies to help myself are lists, I have lists everywhere! At this point, I need to write everything down. If I don’t write it down, it will be gone forever. I’ve found this is frustrating for others a lot of the time too. Someone will tell me something or ask me to do something, and literally 30 seconds later it has evaporated from my brain. Which leaves me feeling terrible! But I know that I can’t take that on. All I can do is apologize and try better next time. Word recall is another symptom that I struggle with on a daily basis. I can be looking at the kitchen table, but for the life of me can’t remember the word table! Frustrating to say the least. But I know that the more I work on my difficulties, the better they’ll get. I think of it as Physical Therapy for my brain.
I scanned the room, looking from face to face, none of them sympathetic, until I looked at my boss. She knew my story, she could tell what happened, she was sympathetic. My eyes must have conveyed sheer panic, she seamlessly picked up where I left off, and picked me up where I had fallen.