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Tips For Managing Cognitive Symptoms From Our Community

Tips For Managing Cognitive Symptoms From Our Community

Research has shown that Multiple Sclerosis is often associated with varying levels of cognitive dysfunction.  These symptoms can present in many different ways – difficulty concentrating, problems finding the right words, feelings of “sensory overload” or slower thinking, and memory loss.  Although most people with MS will not experience severe cognitive impairment, several of our community members noted experiencing some of these symptoms.


Last week, we asked our Facebook community“Do you experience cognitive problems? If so, have you developed techniques for managing your symptoms?” Respondents offered a variety of suggestions for managing cognitive symptoms ranging from memory loss to information processing and verbal fluency:

  • Make lists and take them with you – People used a variety of systems for list-making, from post-it notes, smartphone applications, and small notebooks that were carried at all times
  • “Post-its are my best friends!”
  • “I make notes about everything, even where my car is parked!”
  • “I have notes on my smart phone and a notebook that I take to the doctor with me”
  • Keep a calendar and update it regularly 
  • Use alarms as reminders 
  • Keep your brain active  – use online websites (such as luminosity.com) to play brain games, do crossword puzzles, practice meditation.
  • “I try to avoid a full on routine and make my brain do something new each day (like drive another way to work).”
  • Label drawers and boxes so you can easily find things
  • Keep items in the same location so everything has a place
  • If keeping up with conversation or finding the right words is challenging, try communicating in writing or visualizing the topic you are discussing.
  • “Because I have resorted to texting, emails, and old fashioned letters.”
  • “I picture the thing that I want to talk about”

 

  • Try not to procrastinate too much, it might increase the chance you’ll forget to do something
  • Talk to your doctor about treatments that might help – One community member noted that Provigil given for fatigue helped with her cognitive issues, another found Ginkgo Balboa to be helpful
  • Ask for help when you need it – many respondents mentioned asking their children or spouses to help with reminders
  • Be honest with others- “I just tell my family and my job sometimes, ‘My brain isn’t working.’ They know what that means and give me grace.”

If you experience cognitive problems, have you found ways to cope? Please share in the comments!

Comments

  • Lamm
    1 year ago

    Hi, yes i know what all of you that left comments are talking about.!! The thing that helps me the most is doing what I’m thinking about right away. If i can’t do that at that time i write it down in a notebook i keep near me, almost always. This method helps me get through my days fairly easy since i can always look to see what i might be forgetting.

  • cocomom
    1 year ago

    What M.S. med would help the most? I had all we allergic reaction to Betaseron and Copaxane.

  • jekt074
    2 years ago

    All of these MS cognitive issues are very embarrassing for me. Add to them the fact that I am 66 years old, and people just assume you’re pathetically too old to function properly. I’ll bet there are people out there who know exactly what I’m talking about!

  • Penny
    3 years ago

    Cognitive issues are disabling for me. Caused me to have to take disability. I have been through cognitive rehab twice and it has helped me both times. I now have a binder with sections by alphabet. I write down where I put things so that I will remember later. I keep important documents in there, birth certificates, car titles, stamps, envelopes and other things I use regularly. I also learned using my phone as a calendar was not a good option for me even if I set alarms so I keep a paper calendar in my binder also and update it as soon as I make plans or appointments. In addition, sometimes if I am storing something of great value or importance, i will tell a friend or family member as well…for example plane itinerary, concert tickets. It’s a challenge!

  • kicknMSback
    4 years ago

    A recent show about how our brains trick us normally which seems cruel to the person who endures MS on top of everything else reported that our brain cleans the “slate” so to speak each time we pass through a doorway, so we beat ourselves up each time we forget what we were searching for when we enter a new room. So life hack, keep repeating what you are searching for as you pass through your environment, and be surprised how often you remember what you were looking for. Good luck

  • DW
    5 years ago

    I, too, use most of those suggestions to manage my “issues,” as I refer to them! Several years ago, my doctor asked if I would like to try Aricept, which is actually an Alzheimer’s medication. It made a remarkable difference. Prior to beginning that, I was afraid to drive because I would forget where I was going. I had to even have a list when going to the grocery store for ONE item and keep looking at it. Now, using many of the above tips, I can function reasonably well.

  • Dave Maskalick
    5 years ago

    I’ve done many, if not all, of these things with some success. I am a natural procrastinator so I try extra hard to do things right away, most of the time. 🙂 However, currently I am finding it extremely difficult to maintain my concentration so as to complete the writing of chapters in a book. For example when I go to find a reference I wish to cite I will get easily sidetracked into thinking about a different subject and I do not add any writing to the chapter. I has been frustrating. 🙁

  • Josh
    5 years ago

    Sometimes, I find that remembering something as basic as what I need to get at the store becomes as exhausting as studying for a final in college was…I list the daylights out of everything now. 😀

  • lynn
    6 years ago

    Sure I exercise then up goes the body temp and down go the legs and loss of words ( I call it back to word finder again, in mid sentence. )Here comes the nap 2 hours later I wake up with leg twitches which go to spasms. The never win battle. And yes, when the temp outside drops to 48 mild leg spasms, down to 38 and severe leg spasms. I did realize the gas heat from the fireplace slows the spasms. I already lost 5 words for this post I can’t remember.I’ve had MS 28 years. My kids always blame memory loss on sleep apnea. Now MS to them is just 2 letters I have to remind them all the time now.

  • Livingston
    6 years ago

    I find that I am constantly writing something – somehow. I write notes in the Drs. office from the questions I have brought in (kept in the “Notes” section under Contacts. Then transcribe them back into my phone – add to the “Notes” which will then go right to my computer Contacts too.

    I think one of the keys to keeping track of things is to keep everything IN ONE PLACE. I take my phone w/ me everywhere – and there is a neat application – that looks like a yellow note pad icon – that I keep ideas, notes, interesting web sites, TO DO lists, ?s to take to Apple, all kinds of things. But it is all in one place.

    Before the phone, I had a fat, small spiral notebook that I carried w/ me everywhere. Everything went in there — and was very, very helpful. Had to flip thru many many pages to find what I needed sometimes…..but always worked!! Sometimes would number the pages so I could note page #. “See page #_____” Or put paperclips or post-it notes sticking out like tabs.

    If I have to do something on a certain date, I put it in GCal, then ask it to remind me a day in advance – and then the day of. If it is an appt, then ask it to remind me 2 hours in advance so I’ll have time to get there. I carry a weekly paper calendar, have a monthly calendar out in the kitchen and do the daily calendar on the iPhone.

    Timers and alarms are really helpful too. Like when doing laundry. If I need to take stuff out after about 15 min so it can hang to dry (no wrinkles) I’ll set a timer. Otherwise, off I go – completely oblivious. Between MS and ADD — fagettabowtid. I can go thru a whole day, busy, and get very little done and not be able to tell you what I did all day!

    There is also a recorder on the phone that I use while driving – when I can’t write. Get that ready to go before I start the car if I think I might need it. Also good at writing w/out looking at my hand! So still write while driving. I know, I know. Probably not the safest, but I write SO much I do very well w/ this – and not looking.

    Always leave post-it notes on the door if you need to remember something on the way out. Or develop a saying for yourself to repeat before you go out of the door– “Do I have my WWMMK?” wallet, water, money, mail,keys? Don’t move too quickly. Stop. Think. Put whatever you need to take w/ you right in front of the door.

    I also have a notebook where I keep notes on books I am reading – so I can remember who is who and what is what. And even what books I’ve read.

    Another notebook for gardening – what plants went where– as I would NEVER remember the names.

    Another notebook for house related things. Three ring binder w/ all essentials. Utility info and phone #s /tax info and phone #s,/ insurance / maintenance issues/ an on-going calendar of when things have to be done…Not back up stuff like bills, just the main, most important info. All in one place.

    When I go back and read this, sounds like I’m organized. I’M NOT. This is just a desperate attempt at keeping my head above water.

    It is really hard to get into the ROUTINE of constantly checking for lists – calendars – whatever. You have to leave yourself notes everywhere: Check Calendar. Other notes I need: PUT IT AWAY. FINISH IT. WHAT IS THE MOST IMPORTANT THING TO DO NOW??

    I take notes when talking on the phone with friends too – add small note in w/ their Contact information. And if they have something important coming up I need to remember – it goes in Calendars.

    My main issue now is organization. I cannot CANNOT decide where or how to put things away. I think that is something the MS Society should get involved with – maybe having more seminars or somethin about organizing. Finding some professional organizers who could help us – get grants? It is all too overwhelming. Really does make life confusing and miserable. I recently moved and can’t figure out a system AT ALL.

    I think those are all the tips I can think of now!!!

  • Penny
    3 years ago

    Totally can relate to everything you said

  • S. Holmesley-Holroyd
    6 years ago

    Having MS and taking bachelor level courses in college is one heck of a challenge, even though I am mostly okay. Except for days when I’m not, then things can get hairy- because for the most part cognitive problems are all that I have, along with fatigue! I like to say my “brain isn’t braining” when it happens, and I usually get a laugh and a lot of patience for it.

    I work around it by making lists, tons of phone reminders, using relaxation techniques and my favorite is keeping up my thesaurus. I cannot count the number of times I’ve tried to describe something only to ‘forget’ how to say ‘this is green,’ so letting go of the description I’m fighting for and simply focusing on a different way of saying the same thing helps tremendously.

    The days where I’m stuck in a confused fog are the worst, but being able to record the classes (usually verbal only) and come back to them later helps keep me from falling behind. I also take a heck of a lot of notes, even if I’m not sure what I’m writing in the first place on those days.

    But the most important thing that helps me is realizing it’s okay to take a moment and not rush myself to understand something.

  • Marian
    6 years ago

    My phone is my right arm. I have a 30 reminder for all of my appointments. I do have to think before speaking, but I do stutter over some word as my thoughts can be there and I just cannot get it out.

  • Silverdracos
    6 years ago

    I use my phone for multiple time reminders -like picking up kids from school. And I’ve got both a calender and a notebook in my purse at all times. But my go-to reminder is my arm/hand. If there’s something I absolutely need to remember to do it doesn’t get lost/forgotten and waves itself in front of my face as a frequent second-hand reminder. Also, it catches other people’s attention – and reminds you again when they comment. I have learned NOT to try and maintain dignity by only writing one small letter – I’ll know that “B” was something funny I desperately wanted to tell Matt about. . . but have no clue as to the details. LOL

  • Annlnt
    6 years ago

    I was a fairly new dietary supplement called axona. You have to have a doctor’s Oder for it. Insurance may pay for it, but mine does not. It is around $70 per month, but worth every penny. It is a form of MCT oil that feeds your brain the energy it needs to function properly. I tried it for a month and noticed a big difference in my word searching, tip of the tongue loss for words, calling things the wrong name, etc. I am now off it, due to financial issues, but hope to go back on the magic powder soon. Axona.com is where you can find it. I am a dietitian with MS and the science behind it makes great sense. Also good for Alzheimer’s.

  • itasara
    6 years ago

    I used to take ginko everyday. I read that some research showed ginko did not improve memory or other cognitive issues. I can’t say I have read anything scientific to say it really does help. It has been always controversal that I can tell and maybe subjective. I stopped taking it. Can’t say I saw any specific improvement while on it and I’m not sure anything has changed since I came off it. Cognitive issues also occur as one ages..so hard to say in my case what is ms and what is getting older.

  • eva
    6 years ago

    Too easy to blame ms – cognitive dysfunction is a side effect of several drugs eg cholesterol/statins, interferon, anti-depressants … check drug manufacturer webpages for side effects – ‘rare’ means rarely reported …

  • Stacy
    6 years ago

    Cognitive issues for those with MS is VERY REAL! I don’t take any meds other than Gilenya. I have “innumerable” foci/lesions all over my brain – which I equate to having a faulty circuit breaker in my mainframe.

  • Ronald Huff
    6 years ago

    I found all of these tips helpful and many of them I have used. I want to emphasize how exercise seems to have helped a bad situation for me. When I was diagnosed in 1988, the byline was that exercise raised body heat and lowered physical function for MS patients. Now that is changing, and my past nine months of renewed activity is encouraged by my neurologist and seems highly beneficial from my standpoint.

  • Stacy
    6 years ago

    Mine was dx’d in 1985…what type of exercises do you do that don’t raise your core body temp?

  • Marjoryorr
    1 year ago

    Yes
    I try to organise everything the night before for the morning. I write to do lists for the day.
    I try to leave things out so I can s

  • LB
    6 years ago

    My problem is my mouth does not necessarily say what my brain tells it. For example, precipitation comes out as participation. I end up repeating the word over and over as I try to get the right word out – its almost like stuttering.
    In normal conversation this can be laughed off, but I teach college students and its pretty embarrassing. Anyone have tips to reinforce the brain-mouth connection?

  • amber aucoin
    6 years ago

    Yup I know that situation…

  • Marian
    6 years ago

    Yup, that is exactly it! Almost a stuttering.

  • Lovelady102613
    6 years ago

    I’ve been diagnosed with MS for 6 months and I’m on my third episode, this one only consists of minor leg issues, but mostly cognitive issues. I am having issues with what words mean what and forgetting mid sentence what I was even going to say. This so far has been the most frustrating issue I’ve had to date – mostly because I’m normally the type of person that is organized and remembers everything.

  • MyMSWalk
    6 years ago

    Staying organized at home has helped me a LOT.

    If I am having cognitive issues and am in a social situation (my biggest struggle I think?) I try to continually remind myself to be patient with MYSELF and with others.

    Notes are only effective if you REMEMBER where you put them and REMEMBER to take them with you. I am still trying to find a way to make this work. Maybe there is an article on that? Or maybe someone here has suggestions?

  • Christie Germans
    6 years ago

    Awesome tips! I, too, use Post-Its to remind me of stuff. Love ’em!

  • starsfan8
    6 years ago

    Just came from the Rocky Mountain MS Center today after having a conversation about cognitive issues and was told that exercise 5 days a week, 30 minutes a day, will help to increase cognitive reserve…For me, notes app on my iPhone and Calendar app are priceless — must put each appt. in the calendar when I make it, as if I walk away and don’t write it down, it is gone…

  • DonnaRuth
    6 years ago

    Repeat, repeat, and, REPEAT!

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