The realities of living with MS-related cognitive impairments
When I process slowly or can't remember, I could use some understanding
Of all of the cognitive functions that multiple sclerosis (MS) can affect, memory and processing issues have been my primary burdens. I’ve found them difficult to navigate and manage, especially when others don’t fully understand the extent to which they affect me.
My MS-related cognitive impairments have resulted in poor focus, slowed thinking, memory issues, and a whole lot of brain fog. I often struggle to find the right words to say because my brain doesn’t process information immediately.
During these moments, I feel overwhelmed and helpless. Conversation partners may think I don’t care enough to keep up, but that’s anything but true. When I’m responding slowly, I push myself to think faster, which creates strain and almost always increases the brain fog.
When my brain is not my friend
However, I’ve met many extremely understanding people who grant me grace and patience. My lovely and understanding graduate school adviser, for instance, has always allotted me extra processing time. When she gives me an influx of new information, she takes the time to ask me if it’s too much at once, and she doesn’t expect an immediate response or reaction. That allows me to feel comfortable and secure with my thinking, and I don’t feel forced to overwork my brain to offer a half-considered response.
I also have difficulty concentrating, specifically when two things are happening simultaneously. During these moments, my brain feels on fire because I cannot split my attention equally, which leads me to pure and utter panic. That’s another instance of people thinking I don’t care and am not paying attention to them, when what’s really going on is that many things are happening at once and I’m flustered or confused.
For example, I cannot talk and drive. When I’m behind the wheel and my passenger is trying to have a conversation, I have trouble listening and responding. I remember when my uncle taught me how to drive; he kept trying to talk to me until he realized I was extremely focused on the car and the road, so I wasn’t talking back. Since he picked up on my cues, he stopped trying to converse and let me pay full attention to driving.
The biggest burden of them all is my memory issues. I have trouble recalling recent conversations, things I and others have said, or tasks I’d planned on doing. When my lack of memory is apparent, people think I don’t care enough to remember or that I just wasn’t listening, both of which are untrue. These assumptions make me feel horrible, and I mentally and emotionally beat myself up because I can’t remember — even though I know it’s not my fault.
Some people can remember conversations word for word and recall memories in vivid detail. In contrast, others may only be able to provide the gist or summary of a conversation, if that. I wish people understood that when I can’t recall something, it’s not fun, and it’s not a quirk I flaunt when forgetting seems convenient.
I wish people realized that not all of our brains work the same way, and that’s OK. Even if they don’t understand how MS can affect cognition, they shouldn’t make others feel less-than. Some of us simply need more time.
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About the Author
Leanne Broughton
I also feel as you do. I have noticed my brain fog moreso the past 5 yrs. I am a SPMS, 65 yrs old, 26 yrs with MS. It is embarrassing when i do not have the word I need in conversation. I know what I want to say. People say its just age but its not. It makes me feel and look stupid. Names can be difficult even when I've known them for years. I have tricks and other methods to spark my memory but that doesn't always work and my brain is too slow. Things involving the computer are sensory overload and I feel stressed. It is hard to sit at a desk for a prolonged time.
Jeanette Williams
You have described exactly how MS affects my thinking abilities! I had to leave my career because of these changes. When I am stressed, odd words take the place of what I was trying to say. It’s very frustrating.
Wendy R Hovey
Thank you very much. This was helpful to me, and I know that my husband, who has Parkinson's Disease, will relate to it!
Christopher Younger
Thank you so much for sharing, it helps me not feel so alone and misunderstood. Lucky for me my second wife gives me tons of love, grace, and understanding. It must be so nice to be truthful always about what you are going through without fear of people you love throwing you out of their lives.
Ellen Lerner
Having email issues, so putting in a different account here I hope works..
I am having the same issues as others here. Inn one comment here it said these memory issues are not an age thing, but I think it is related to age and MS both. I have not had progressive MS persay. I came off the meds five years ago. I have an MRI appt coming up in August and a neurologist appt in Sept. so maybe my neurologist will comment on age vs MS issues. My husband does not have MS and is turnig 80 in November. I think he is having some memory issues or recall issues as well, so I cannot say my issues are just MS related. I noticed more of a change in March this year when I turned 77 and my memory recall was worse than it was. I have always had difficulties recalling names of people I know or don’t know after I meet someone new, but now this recall makes it impossible to recall a name of someone I know really well.
As for focus, I can stay focused on things I want to stay focused on, but I have a little less patience lately to finished a project or maybe less motivation to start a project I need to do. Is this MS or is it my lower tolerance due to aging. I do feel a difference since I turned 77. I did not expect anything to change, but it did.
I too am having a lot of trouble finding words I need. I know this can be an age thing. Could be MS but I really don’t know for sure. My brain works a little slower and sometimes the word I wanted comes to me later on. I set up my prescriptions and supliments every Sat. for the following week. Lately I have made some mistakes of keeping track of what day it is and taking the set of pills on the wrong day or taking pm meds and suppliments when I meant to take AM ones. I have even forgotten to take them at all. I even have Alexa reminding me to take them, and sometimes I ignore it. This is something that did not use to happen but is happening more often.
In conclusion MS and aging are both phenomena I am dealing with.
Lisa Peterson
Desiree, thank you for writing this, and congratulations on starting your PhD! It looks like I'm in a related field- I'm faculty in a school psychology program- and this the cognitive impacts of MS as an academic can be really frustrating. If you are ever looking for support or encouragement please find me on social media (usually drlisa12) and send me a message.