Did you know that MS can cause cognitive losses? Things like decision-making, memory, and reasoning are often impaired. I know this, but it’s not so easy to quantify or easily identify.
Years ago, shortly after being diagnosed with multiple sclerosis, I remembered feeling as if something was off. I admit my vision wasn’t normal, but in addition to the vision issues, things weren’t coming to me as easily as before. Was it something I invented after receiving a diagnosis of an incurable chronically progressive debilitating disease? Maybe or maybe not, but as you know I didn’t let the news stop me.
I remember when I was still working and a colleague asked me about cognitive losses. I’m not sure why he asked. I never bothered to find out either. Had I missed something? Again, I don’t know, I do know his moral character was questionable at best. I dismissed him by responding that it exists, but it’s very taboo and not mentioned lightly. This amounted to my way of politely asking him to mind his own business. I figured we were competing for sales and he couldn’t have had my best interest in mind.
It’s been over a decade since my diagnosis and I know my intellectual acuity has to have been affected somehow. Thank goodness I’m surrounded by supportive family and friends. They may not even know they are witnessing my snail like cognitive decline. Sometimes I can hear my less than articulate speech. I can feel the aggravation of those I’m conversing with. I just take a deep breath and start over again.
These days I am aware of when I am overwhelmed. I’ll simply ask for more time to make decisions. If I feel safe, I’ll be direct and acknowledge that it’s too much information for me to process. Sometimes I have trouble recalling simple words. The other day I asked my husband to hand me that handheld thing on the countertop that sucks messes up. He said, “You mean the dust buster?”
When I got upset about not being able to remember the name he replied, “Don’t worry, we’ll make new memories.”
For years, i have struggled with memory loss. A good point, i forgive easily because i forget, i am in the diagnosis process, i love your blog, thank you for sharing, keep movin, hugs, Olivia
You’re still in the diagnosis process? Well, I must say you are a step further along than I ever was! By the way thanks a bunch for reading my blog!
Hi. Well, I must say I literally cried reading your words. It was a long path for me from not even trying to understand my father who has SM (even before his diagnosis, even when I were a naive child-our relationship was nothing but complicated) to making a research about mental problems of people with SM in Poland. As a student of medical university I want to change something in quality of life of people who must bare everyday this suffering. Maybe it’s only a dream, but what is the worth of life without dreams like that. God bless you.
Irmina, Thanks for reading! And thanks for your research! I release new stories on Tuesdays in case you need more data!
Looking forward to see it! I will also know for sure on Tuesday if I can start working with patients in my faculty. My supervisor-to-be even gave me a hope that I can make doctoral thesis about mental problems related to SM.
Thank you again for sharing with us your story!
Hi Nicole, great post! I was diagnosed with MS 6 yrs. ago and I can relate very well to your article. Well done. Keep it up!
Sincerely, Mike W.
Mike, thanks for reading!In case you don’t know I release new stories on Tuesdays.
You are amazing. I’m 33 live with MS but have many of the “silent” symptoms I’ve been scared a lot lately because I am noticing cognitive decline..Scary but part of the course. I truly enjoy your story and admire your courage to be so open. Thank You….
Thanks for reading. I have to say it easy being so open when only thing before me is a laptop screen!
Hi Nicole. Great post. We are totally on the same wave length! I just wrote about MS memory issues on my blog too. I call it “Memory Games” http://thelesionjournals.blogspot.com/2012/02/memory-games.html. Best, Christie
Christie, We must be! I’ll check it out!
Ohhh the cognitive issues skills definitely exist.
My Neurologist writes them down on my chart as
“word finding difficulties” & I call my husband my 2nd
brain. Without him I couldn’t remember most details.
I am in conversations with people all the time
and I will have to ask them to repeat what they
said just 5 seconds after they say it. And they look
at me like a crazy woman. HA
Everyday I pick my son up from school & I
ask him how his day was & he answers and 3mins
later I will ask him the same question AGAIN.
He says “Mom you just asked me that!”
I reply ” Sorry buddy.”
It is very frustrating but I have to laugh at it or
I will end up in tears. XOXO- Shelby
Thanks for reading. I’ve convinced myself that maintaining this blog is key for my functioning!
Hi, I was diagnosed with MS almost 4 years ago. Although it hasn’t affected my mobility permanently yet, I still know its there, the vision, slow movements in hot weather and the loss of ability to find the words or remember sometjing. I have a terrific husband who helps me through and I’m glad to see people who will share their experiences. There should be more of it. Thankyou all
Thanks for reading. Listen, please do what you can while you can! I think sharing helps me as much as it seems to help my readers.
By the way, I release new stories on Tuesdays. So come back!
We all have these diffaculties, and must accept them, with you having a yound child it will keep your brain more active than someone alone, or not having much communication, I was a wonderful speller never forgot a name and now have issues with those things the most. You will find ways to trigger your memories and be happy with them, I keep a ?diary? perhaps not quite the right word but at least I remember that I paid the bills or made an appt. and it really helps, give that a try, good luck
Yes, that’s a good idea!
Don’t have MS, but am a fibro/cfs spoonie, & enjoy your blog….your hubbie’s response made my heart ache (in a good way!)!! Nothing like getting support, hope & encouragement all when needed, without having to ask for it. I hope you’re both able to nurture that relationship; it can make all the difference in the world when you’re chron. ill. All the best to you both!
Yes it can. I just hope I show him how much I appreciate it daily. Thanks for reading my blog!
u did it again. Wow u hit the nail on the head and that last thing your hubby said beautiful. Keep Movin My friend
Thanks for reading! Hey I know you from twitter! Again, thanks for following me here too! I’m glad it hit the nail for you. In a good way of course!
We don’t even talk about this in our house and I’ve dealt with it a long time. You know what they say about de Nile. 🙂 your column is always a breath of fresh air. Bless you.
Thanks for reading. Somethings need not be said, your family will follow your lead. When you are comfortable with it they will be too! But I’m not a psyche or anything!
Make new memories. What a guy. As for cognitive issues, I am the master at finding different ways of saying something. Or when I start a sentence and forget where I was headed I feel like I’m on a roller coaster making loops until, finally, I get to what I wanted to say.
Cognitive issue or not you have a wonderful way with words!
I have had extreme memory loss from brain surgery and maybe MS as well. I found a wonderful website called Lumosity,com It’s brain exercises that are fun but the best part is it let’s you know where you stand with other people your age. After training for about six months, my scores went from the bottom 3% to about 60% I figured I could live with that….
How enlightening! I will check it out. Thanks for reading and I release new stories on Tuesdays!
it is a great site, and I feel brain tired afterwards
Candy, Thanks for reading and I’ll take that as a compliment!
I love Lumosity! It really helps with memory and cognitive issues!
Robin, I’ll check it out.
I have been feeling latley like I’m having some cognitive issues but have been afraid to say it aloud. Trying to explain something like this to others that cannot relate can either be a great thing or the worse thing I could’ve done. Some may become overly protective, while others may begin to question everything thing I do. I am somethimes wondering why I did certain things or reacted a certain way when I would have not done that before. I am forgetting things that I just did a few seconds prior. Sometimes I cant remember if I took my medicine so I wont take any because I dont want to over medicate. I don’t know how to have this discussion with others. I am depended upon by so many people….. I am afraid, and I’m not one who scares easily……Sometimes I feel like my head is in a fog of smoke….. I dont know……
Others are one of the hardiest thing so deal with. But I do know that they will follow your lead! So maybe you are’t ready to share. That’s up to you. But I think when you accept it, that initial conversation will go a lot smoother.
But I’m no psyche either!
As always, I enjoyed this post, Nicole. I worry about the “snail-like cognitive decline” also, but since I’m in my 60s, it’s hard to tell what’s MS and what’s aging.
A humorous note: I once took our living room drapes to the dry cleaners and didn’t pick them up for a few weeks. My husband finally asked, “When are we going to go get those, those… you know, those things made out of cloth that you hang over the windows?” I laughed so hard! And he doesn’t even have MS for an excuse.
have a wonderful day,
So maybe it’s not just us!
That made me smile!!! As you know I can totally relate!!!! The way I explain it is my memory has three strikes against it; Age (I just turned 48), Brain overload, and MS. My friends in their 40s say that memory retrieval greatly diminishes at the age of 40 with or without MS. They don’t understand, it’s worse with MS! As you know, you have to have MS to understand!
I’m glad that made you smile!
Oh I do the what the heck is that called thing a lot. I am typing on that thing you know that has all the little buttons and makes letters appear on the screen. I need to go get some more of that brown stuff I put in a cup that wakes me up and is made from beans.
I also like to listen to songs that go like this . … and have played them on the stove while cooking with the CD Player :).
Good to see you! I remember your name!
wonderful reading.. i too have some cognitive issues.. it drives me crazy that im losing just a little bit of me and who i used to be .. im so scatterbrained now.. not organized as i used to be… its been a real challenge slowing down and not setting the expectations so high, its also comforting to read your blog and know that i am not alone.. thanks.. and i love the comment made by your hubby!
Thanks so much for reading. Never think you are alone in this! That’s one thing I’ve learned for sure from blogging.
Don’t feel bad about dust-buster. Can’t remember people’s names, even family members are difficult sometimes. Don’t even think about explaining relationships on a soap-opera…Who can remember those names?
Saw you on MSconnection…Congrats
THanks. I never was good with names. I wonder if…
Your hubby’s response was priceless! He is a gem. I use the word “thingamajig” a lot more lately!
That’s a good one thingamajig. Yeah he’s pretty cool!
Thanks to all of our understanding partners.
We couldn’t pay them enough!
I love your attitude and the information you provide. Don’t feel bad about those little words you can’t think of….one day I found myself in my office, with my head in a fog as I started to pull my pants down thinking I was in the bathroom!!!! Now, I do truly understand how our cognitive thinking is affected.
I just can’t tolerate when people talk down to me!
My step mom says I have the family’s cursed CRS. CRS in this case stands for “Can’t remember #$%^”
I use my memory gaffes as part of the comedy of MS routine stories I tell to make light of MS and make friends comfortable laughing at MS. One of my most common stories is from my first Christmas with MS where I got together 3 presents to wrap, tape and paper.
1st present: put pressent down, cut paper, fold paper, tape – tada! one down two to go
2nd present: put pressent down, cut paper, fold paper, ummmm where’s the tape? I haven’t stood up. It must be within arms reach. Why the heck can’t I remember where I put the tape…a 5 min curse fest ensues until boredom with repeating the same curses allows me to realize there was more tape. So I go and grab another roll to finish. Tada! two down.
3rd present: put pressent down, cut paper, fold paper, ummmm where’s the tape? Seriously? I can’t remember where the heck I put it. Thankfully this time boredom hits faster so after only 2 minutes I remember there was more tape. Tada all done. I saw the tape neatly stacked one on top of the other the next morning, but for the night I just had a block. I could not remember where I put tape down.
Lest one think it only hits for mundane things like tape, I once spent what fealt like 5 min trying to remember my wife’s name before a coworker supplied it for me when I said, “You know, the woman with whom I live.”
life well lived
This is a crazy road we travel. I remember my PT was hesitant to sign off on my license for fear I’d forget where I was going!
I admit, I was doing okay with this post, until I saw that last sentence. That made me tear up a bit. Woot for having supportive family and partners, eh? 🙂
Thanks for reading!!!!