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I Forgot: Memory Loss With MS

How many times in the last week have you forgotten something? If you’re like me, you’re constantly forgetting and sometimes it is small things that don’t matter but I forget big things like appointments or work due dates. I’m not kidding, I forgot how old I was at one point. Memory loss can be a huge issue for those of us living with MS due to the fact that our disease is located in and on the brain and can cause major damage to the nerve connections.

So what do we do?

In the last few years I’ve noticed my memory starting to tank, and I’m only 28. Sometimes people will say “oh you’re just getting older”, which feels like they are patronizing me.  I understand that memory fades as we get older but I dont really consider myself “older”. So in order to remember things, I have become an obsessive list maker. I have post its everywhere. Notebooks full of lists. Apps on my phone that sync with my computer to make lists. Some of my favorite list making apps include Evernote and Wunderlist, which are both apps you can put on your phone, but you can also sync them will other devices like your laptop. They make for seamless list making and are great for things like grocery shopping. Evernote lets you take pictures and store them as well and allows you to give items tags so they become easily search able.

With the amazing technology that is available to us today, being forgetful just got a little bit easier. I still prefer a good ‘ole pen and paper but I am mobile. My life is active and sometimes lugging around paper and pen isn’t convenient.

I have also started making an active step towards memory retention. Many of you might have heard of Luminosity which is a website that had brain exercises. I think this is a great idea for those of us who feel our brains need a good work out. I have recently downloaded the app Duolino, which is an app for learning languages. I used to be fluent in German but have since lost much of that. Duolingo helps me start back at the beginning, and lets my brain stretch its tired legs in the German department. Once I finish that, I might just try a new language all together.

I know that memory loss is frustrating and depressing, but there are some fun ways out there to get your brain working again, which, studies have shown can help to increase brain functionality like the use of your memory. So far the only way I have found to combat this is with lots of lists and exercising my brain. Don’t get me wrong, I still forget things, but I feel like I’m trying to make things as best as I can.  And frankly, I am getting older. I feel like I need to be proactive now in order to ensure I have done as much as I can to preserve brain function for the future. Besides, there are so many fun apps now that make exercising your brain really fun.

How is your memory? What do you to remember important things and preserve your memories?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • l4u95h
    2 years ago

    I’m 33 now but when I was 23/24 (not dxed yet did not even know what MS was) I would have to stop my 3-4 year old . Put my hands on face so she was looking at me and ask her what my name was. The first time she told me Mommy but when I said no my name she told me Stephanie. I had to do that a lot. I forget lots of stuff. I just write down what I think is important and hope I don’t lose it. My mind reset itself when I had a relapse at Christmas.

  • Kittymae
    6 years ago

    It is so frustrating, having so much trouble with my memory, when I used to have an impeccable memory. But I think the worse part is that my family uses the fact that it is so bad to get out of doing things I asked them to, or when we argue about whether or not I told them an important piece of information, or things like that.
    My husband is an otr truck driver, I tell him he’s lucky I remember who he is when he comes home!

  • mamawags
    6 years ago

    I CAN NOT stand the forgetfulness and absent-mindedness! It drives my family crazy too. I forget sooo much (signing my kids up for sports, paying for an activity that my family has been looking forward to for months and now all the sudden we can’t go because dummy Mom forgot to pay, the list could go on and on and on). Most importantly, I switched from Copaxone to Tecfidera about 8 months ago and I seriously asked my Neuro to switch me back! I’m willing to give myself an injection every day to know I am taking my meds rather than take a pill twice a day! I forget the second dose at least half of the days! I have three really loud annoying alarms set on my phone and notes everywhere, but I just can’t seem to remember to take my Tecfidera during the day! Of course, she said she wants me to keep trying but I really don’t even want to!

    I also have lists and reminders set everywhere! I would be so completely lost without my phone. I have everything in there to help me remember but I still forget. I made my family get used to a huge dry erase board at home with the monthly calendar on it because I can’t remember what kid has what activity and when. Or what days my husband works and what days he has off. Or what store I am supposed to go to today for my job…

    I have tried Luminosity but wasn’t a huge fan. I DO make sure to have a crossword, word search or some kind of brain workout material handy all the time! I can’t just watch TV with my husband in the evening. I have to be doing something else at the same time to work my brain out. It sounds so silly and it drives me nuts that, at 38 yrs old, I have to put this much effort into just using my brain.

  • Erin Rush moderator
    2 years ago

    I am sorry you deal with this issue, mamawags! And Mom guilt can be the worst. I hope you offer yourself some grace on those rough days. Thank you for sharing with the community. Best, Erin, Team Member.

  • Ferretdancer
    6 years ago

    What were we talking about? Oh, yeah. I’m wondering if these brain exercises are a permanent fix? I have trouble remembering words, although I can go into long descriptions of the word I’m trying to think of and eventually someone might come up with the term I’m desperately searching for. Being able to remember people’s names is really difficult as well – and embarrassing. I think name tags would help, but I don’t believe people would be terribly enthusiastic about that.

  • Zarrin Madelene P
    6 years ago

    I was also diagnosed during my last year in college which was 2012 and I just wanted to say that my ongoing lists are endless and both done through the good ol’ paper and pen but also through that portable little technological privilege and it’s sibling, that computer, too.

    The memory impairment scares me because I fear that even if I do get into a neuroscience PhD program that can help me to help cure MS (my dream), what if I can’t remember what I’m learning and/or it’s just memories that have an even shorter life span?

    I’m taking classes right now under UC Berkeley Extensions to help keep my brain active, but it is just so much harder to get through now.

    If only the world knew that it wasn’t our choice to lose acuity in our short term/long term memories, and even though it may look like we’re not trying, we are but its just more soothing to continue to smile beyond our sorrows that are still lingering in the back ground.

  • Laura Kolaczkowski
    6 years ago

    Well said, Jackie. Use it or lose it can apply to the brain, too. And no, you are not older (yet). Do you know how I can tell? You didn’t mention having lists to remember to check your lists – that definitely comes with middle age. And at my advanced age and well honed skills and experience, I make great lists using all those mobile electronic aids, but then forget that I even made them. LOL


  • Kittymae
    6 years ago

    I do the same thing! (make multiple lists to remember things, then forget to check my lists…or where I put them!) And Ferretdancer, I do that same thing, trying to remember a word or name that I have known forever, being able to go into a long, detailed descrition of it, but not be able to remember the word or name. It’s embarrassing and humiliating (I can’t remember how to spell words, either…lol).

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