Skip to Accessibility Tools Skip to Content Skip to Footer
A man lies with his arms behind his head and struggles with a red scribble cloud of thoughts in his head

Thinking Compromised

My roommate walks through the living room and asks me if I want to join her and some friends for happy hour, however, I give no response. My eyes acknowledge her, but in her words “seem glazed over” and I sit there, speechless. Inside that head of mine, my thoughts are a jumble; I can’t quite understand what she’s getting at. Words are floating around in a mist, some of them hers, some of them mine, and part of me is trying to grab on to them, any of them, to respond. It’s not simply a matter of finding the right word (though that happens often enough); I’m having trouble stringing cohesive thoughts together. I’m not only unsure how to respond, but I’m also not even 100% sure what she is asking. I finally utter something unintelligible before grabbing her arm and getting out “rough”. Knowing me, she takes it to mean that I’m having a rough moment and gives me time. Moments like this are extremely common for me, lasting between a few minutes to the better part of a day. This type of cognitive dysfunction is not only disruptive to my life, but incredibly frightening.

More than losing a career

As I’ve said before, these types of issues have had a profound impact on my life and played a huge role in my having to leave my career. While the embarrassment of having to respond to “So, what do you do?” type questions is bad enough, living with these types of thinking problems every day is extremely difficult for me. Did I take my medication? Have I seen this before? Why am I here? What are these people saying? Did I eat dinner? How do I work the microwave? What is this? Every single part of my life has the chance to be completely interrupted at a moment’s notice. It’s had a pretty adverse effect on my independence as well. Navigating life has become an unpredictable challenge, made even more complicated by the fact that most folks who see me, have no idea what’s happening because it’s not visible. I look fine on the outside but may start acting weirdly, speaking gibberish, or not responding at all. If you don’t know about my issues, I might seem either drunk or rude. Most of the time, there isn’t much I can do. If it lasts a few minutes, I can try to go about my business as usual, but if it lasts longer, I simply have to lay down and close my eyes. I can’t even watch TV because I can’t follow what’s going on when I am like this.

Cognitive dysfunction is terrifying

On a daily basis, sure, it’s awful because of the way it affects my life, has deprived me of my career, and puts me in potentially dangerous situations. Another aspect people don’t think about with regards to cognitive dysfunction (or brain fog as some call it), is that it’s extremely scary, to me anyway. When you forget so much, when you get confused so often, it takes its toll. When you sit there, unable to recognize what someone is saying and your brain is a jumble, it’s just awful. Sometimes, yes, I know what’s happening and that it will pass, But there are other times when I have no idea what’s going on, I’m not thinking well enough to understand. I can’t even convey with words how scared I am when this occurs.

I don’t always know when my thinking is compromised

There are times when I realize I was impaired after the fact, meaning I wasn’t thinking right and went about what I was doing, to only later realize that my thinking was compromised. I’ve made errors, purchased items, taken more medication than I should have (conversely, I’ve been SO sure I’ve already taken my medication that I won’t take it when I should, so sure of it, that even when it’s in a date labeled container and I see it still in there, I actually start to reason that it still being there is somehow a mistake, someone else’s mistake, not that I misremembered.) That’s how convincing this can be. I’ve showered more than once on occasion and done all number of things (with varying levels of danger) without realizing what I was doing until after the fact. This has happened so often, that I sometimes feel like I can’t trust myself. Do you know what it’s like to not be able to trust your own thoughts? To not trust yourself? It’s horrible.

Adaptating to these thinking problems

At this point in my life with Multiple Sclerosis, having these thinking issues is something that I have to live with. It’s not the easiest, but like most things, you adapt. I do my best to educate the people close to me, so they understand and can recognize what’s happening. I constantly try to do brain puzzles and even work with LEGO as a form of rehab. I also rely on routines and familiar places. Oh, and notes – many, many notes. From simple reminders written in sharpie on my arm, to setting up notifications on my phone, to checklists (man, checklists are so important to me). So not all is lost with these issues, but it does take some effort. I’ll probably never be a software engineer again (honestly, I’d settle for being able to read a book without rereading most of it several times), but I still survive and make a life for myself.

Do you suffer from brain fog or other cognitive issues? Hit up the comments below, let’s discuss!

Thanks so much for reading and always feel free to share!

Devin
My Other Articles On MultipleSclerosis.netFollow Me On Facebook

Poll

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

Comments

  • Dede74
    2 months ago

    I am so glad you wrote this article, because recently I had a very well if you want to call it, embarrassing moment because of brain fog. I was visiting friends, well there was a couple there that my husband kept talking to, I was wondering how he knew them. They looked familiar to me, but just couldn’t remember who they were, it literally took me 30 minutes to remember. I blurted out that I knew who they were and was so sorry it took me so long to realize it, they were very kind and gave me a hug told it was alright. Lately multi tasking is not even funny, start one project, go into another room realize I need to do that and totally forget about other project I started. Also forgetting where things go and get put away, tried to put step stool in fridge, gone into pantry to get milk, gone into room and totally forget what I was in there for. Word finding has been so much fun, cannot find the right words at all, or say the word all wrong. I basically have stated I have made up my own language “Dee’s Words”. I am really scared because I forget sometimes where I am going in the car. It really feels like I losing my mind. I really try to continue to smile and laugh about it, but deep down inside it really does hurt and scares me so much!! Thank you Devin for sharing this I am so glad when someone shares something about cognitive issues. That way I know I am not the only one dealing with the craziness and fear that MS can cause with our minds.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Dede74!

  • Foggy160
    2 months ago

    Yes indeed, Reading is so difficult for me, I have to read a libe or paragraph over and over before comprehending. My spelling is off even with the simplest words, thank God for spell check. I’m an infant/toddler teacher, during circle time my brain is all over the place, I can barely sing a song correctly. I forget how to put observations in on t hff evcomputer, etc. I stopped driving because a familiar place to me will become unfamiliar. By the end of the day my brain shuts d oil wn, if someone calls me or talks to me it sounds like the adults on Charlie Brown show, wom wom wom

  • Devin Garlit moderator author
    2 months ago

    Thank you @Foggy160, so sorry to hear what you’ve been through. Reading (https://multiplesclerosis.net/living-with-ms/cognitive-dysfunction-reading/) and driving (https://multiplesclerosis.net/living-with-ms/driving-realizing-potential-dangers/) are two areas that I’ve also struggled with because of my cognitive issues. It’s very frustrating, you are not alone though.

  • nanarides62
    2 months ago

    I volunteered as a Reading Buddy in a grade school last year. I was always getting confused on which student was reading what and where we left off. It was only 4 sweet students, one at a time, but they were having to keep reminding ME, no matter how many notes I wrote to myself or how may bookmarks we used, God bless them!

    Also, I am directionally challenged sometimes when driving, even to familiar places, miss exits, etc. And I know the feeling of not recognizing familiar surroundings. Probably just as well I’m not on my motorcycle anymore LOL

  • Janus Galante moderator
    2 months ago

    nanarides62,
    reading Devin’s article, I happened to remember a time when after a dr.s visit, I left the parking lot, turned to take the 30 mile drive home and realized I had NO idea where I was! Nothing but trees.(We’re very rural)

    After driving for about 20 minutes hoping for familiar landmarks, I realized I was lost. I had turned the wrong way out of the parking lot!

    I know what you mean about being directionally challenged, even in familiar places!

    My go to helper is now my navigation system in the car.
    Sometimes I have to work at it, but so far so good. No more wrong turns!

  • Gaston
    2 months ago

    Devin your article is refreshing and timely, thank you for sharing. Im struggling at work and dont want to leave my job. Im so embarrassed when this happens and its so hard to just shake off when its with a team of new clients. Do you know of any training, therapy or guidance to help with brain fog?

  • Devin Garlit moderator author
    2 months ago

    Thank you @Gaston, very sorry to hear. Your neurologist should be able to recommend a therapist, if not, your local MS chapter will know someone who deals with cognitive issues with MS. Some folks have luck with medications too, like Adderall. Others have had great luck with brain training type web sites like Lumosity. It takes some experimentation to find what works best for you (I personally have had some success working with LEGO: https://multiplesclerosis.net/living-with-ms/building-better-life-legos/, so trying to think outside the box can be helpful when it comes to finding a solution)

  • Gaston
    2 months ago

    Thank you @Devin, I’ll check those out. Very much appreciated.

  • Gaston
    2 months ago

    Oh hey i found one article that offers some independent strategies:
    https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Cognitive-Changes

    Any other advice or recommendations are so welcomed

  • Karen60
    2 months ago

    This sounds like me I have a mild cognitive impairment and other health issues but I haven’t seen ms on any paperwork, they just laugh and say your getting on you know.

  • Devin Garlit moderator author
    2 months ago

    Very sorry to hear that @Karen60, might be time to see a specialist

  • Bkboo
    2 months ago

    Cognitive issues scared the Crap out of me! 25 yrs or so ago …double vision, then I had the right leg, then left side….20 yrs later Im driving to my new place and got pulled over because my car was not registered. I said to the policeman “No I always take care of that and that cant be” I looked and wasn’t registered! I apologized and took care of it the next day! I thought boy I must be tired or stressed. After all I had just moved. As I kept explaining it away, it got worse. Couldn’t remember what channel or show I was watching, etc. Pfft and driving was scary. Finally got an MRI, I was having an attack. Its gotten better than it was but MS left a reminder, not trusting yourself is frustrating and scary!

  • Devin Garlit moderator author
    2 months ago

    Thanks for sharing @Bkboo, it can be pretty scary when we can’t trust ourselves!

  • nanarides62
    2 months ago

    MS has been ruled out but we are still trying to figure out what autoimmune disorder I’ve been suffering from. I need to change my user name to nanaused2ride and I am now 64! Motorcycle has been parked for over 2 years due to fatigue, pain, cog-fog, depression, etc.

    I too had an issue with my car key the other day; I didn’t put it in my ear but was searching around the dash as I couldn’t remember where to put it. Just this morning I had to look for the all-too-familiar power button on my TV remote and couldn’t remember how to restart my computer the other day.

    I have been working part-time as a substitute in school lunchrooms. I know I look like a deer in the headlights when being given instructions and have to have things repeated. It’s a weird feeling when it takes time for your brain to catch up with what you are hearing, and then for your brain to tell your body what to do!

    Thank you, Devin, for your articles! The MS doctor is still following me and also referred me to Rheumatology where I have found another awesome doctor who is leaving no stone unturned. Just want a diagnosis so we can start treatment besides gabapentin for pain, primidone for tremor, and venlafaxine for depression.

  • Devin Garlit moderator author
    2 months ago

    Thank you @nanarides62, getting a proper diagnosis is hard for so many people, I hope they figure it out soon. Always feel free to keep reading and commenting here though, so many of the symptoms and situations that we go through with MS apply to many, many other chronic illnesses.

  • Shelby Comito moderator
    2 months ago

    I can imagine it must feel so frustating to be experiencing all of these debilitating symptoms and still not have a clear diagnosis, @nanarides62. I really appreciate you taking the time to share a bit of your experience and so admire your ability to still find some humor in it all.

    I’m so glad you found Devin’s article helpful, and please know there are many in our community who are still seeking an accurate diagnosis, too – you are not alone and more than welcome here. We hope you’ll continue to keep us posted on how you’re doing. We’ll be thinking of you!
    – Shelby, MultipleSclerosis.net Team Member

  • Copperlaces
    2 months ago

    I have this issue to some degree every day. Sometimes it’s on a milder scale and sometimes it’s very severe, umcomfortable, and debieing in a foglitating. I feel like I’m loosing my mind. It’s hurt my relationship with others especially my partner. He can’t handle me being like a robot sometimes. I miss my old self.

    It was much worse a few years ago. I used to have a lot of episodes in which I would completely space out and be paralyzed. I wasn’t able to move or even think and sometimes I wouldn’t respond to anything going on around me. Some people have said that these sound like absence seizures. Does anyone else here get this?

    I feel like I’m loosing my mind and I don’t know if I can do anything about it. I try to keep my mind stimulating through writing, drawing, brain games. Reading is too difficult for me to concentrate.

  • Copperlaces
    2 months ago

    I started getting this disease ten years ago and I’m worried that by the age of 30 I’m going to have full-blown dementia. This is ruining every part of my life. 🙁 when will it ever let up?
    All of the neurologists I’ve seen were students and not very knowledgeable about MS. I feel like I was the one who had an idea of what was going on besides the exact details of my brain scans. Ugh. :/

  • Devin Garlit moderator author
    2 months ago

    Thank you @Copperlaces, so sorry to here what you’ve been going through. All doctors are certainly not created the same. As tough as it is, I encourage you to keep looking for a new doctor, preferably an MS specialist. It’s not an easy process, but it’s an important one.

  • Copperlaces
    2 months ago

    Typo: second senternce correction “and debilitating being in a fog.” Uh I screw up writing like this a lot.

  • Copperlaces
    2 months ago

    I started getting this disease ten years ago and I’m worried that by the age of 30 I’m going to have full-blown dementia. This is ruining every part of my life. 🙁 when will it ever let up?
    All of the neurologists I’ve seen were students and not very knowledgeable about MS. I feel like I was the one who had an idea of what was going on besides the exact details of my brain scans. Ugh. :/

  • cmhj
    2 months ago

    I’ve been struggling with this a lot lately. The most current addition to my cognitive issues is forgetting how to spell some words.

    I also seem to have trouble “tracking” the words and sentences when reading a book. I’m an avid reader and love to hold an actual book in my hand, but I’ve been having to listen to audio books.

    Do you experience any of this?

  • Devin Garlit moderator author
    2 months ago

    Thank you @cmhj, I definitely have trouble reading, enough that I did a whole piece just on that: https://multiplesclerosis.net/living-with-ms/cognitive-dysfunction-reading/

  • Toledo34287
    2 months ago

    Oh Devin; this one made me cry. I’m going through my own mind shift and your article alerted me to things that are going on with me that I ignored subconsciously on purpose.

    I’ve lost friends. Somehow I’m alienating those around me that I love; but somehow I’ve said something that severed the relationship. I don’t know how, or what I said.

    For the first time in my life I’m alone and lonely. This is so foreign. I don’t know what to do with it. More depression.

    Somehow your articles say just what I need to hear, when I need to hear it.

    I look forward to your next article each month.

    Thank you for all you do. It really is helping lives.

  • Devin Garlit moderator author
    2 months ago

    Thank you @Toledo34287, sorry to hear what you’ve been going through. I hope you see here, that you are far from alone in this journey!

  • DiPW1
    2 months ago

    Thank you for this article, Devin. I have just been called up for Jury Duty and had to decline, because I just can’t remember things clearly, anymore.
    Knowing I’m not alone, is a big help.

  • Devin Garlit moderator author
    2 months ago

    Thank you @DiPW1, as you can see, you are far from alone with this issue! It’s actually much more common than most people realize.

  • DiPW1
    2 months ago

    It shows how important this site is for our mental health and emotional wellbeing.

  • brian1
    2 months ago

    Hi all. Ive been living with MS for 20 years now. I try to keep physically fit, just slow, weak, and wobbly. People seldom notice after 20 years of trying to look “normal”.
    The thing that makes me mad is the invisible brain functions. People just think I’m nuts and unreliable.
    The things that suffer worst are what I excelled at. ie. Planning, organizing, logic, remembering anything, making decisions, leading people, numeracy and even understanding numbers, conversing with more than 3 people at a time, vocabulary, expressing myself, and even doing simple little things around the house. I’m sure you think I’m nuts too.
    Problem is the physical things are easier to manage, but I battle to handle the brain issues.
    Regards… Brian
    ,

  • Bkboo
    2 months ago

    Brain issues are.. for me more difficult to deal with…I was the life of the party, I could multi task because my thinking was quick …now its slowed and yes adjusting can be hard.

  • Devin Garlit moderator author
    2 months ago

    Thank you @brian1, you are so right about the invisible issues. In a world where people rely on what their eyes tell them, it feels like we’ve had insult added to our injury!

  • Lisa
    2 months ago

    As always, your writing really hits home. I had to leave my job because of an inability to keep track of things I was working on. Timing worked out okay for me, but it was sad to find myself as someone else. It does take me way longer to read than it once did because I forget what is happening. I used to have 3 books going at once. No longer. On the upside I can enjoy the same TV show or movie more than once. 🙂

  • Devin Garlit moderator author
    2 months ago

    Thank you @Lisa, I am glad you can look on the bright side! There is always a bright side if we look for it!

  • katbow420
    2 months ago

    I have become a hermit because of my cognitive issues. It’s deepened my depression which is very scary. My relationship with my adult daughter, who lives with me, has deteriorated to the point I’m not sure it’s repairable. She thinks I use my disease as a convenient excuse. I don’t know how much longer I can deal with this. Everyone talks about Alzheimer’s but I think our cognitive problems are just as damaging…for everyone involved. I hope my daughter reads your article!

  • Devin Garlit moderator author
    2 months ago

    Thank you @katbow420, so sorry to here what you’ve been going through. I encourage you to share this article with your daughter, hopefully seeing others discuss these issues will help hammer home the severity of them to her. Best of luck!

  • Shelby Comito moderator
    2 months ago

    Hi @katbow420, the cognitive issues MS causes can be the most debilitating and frightening of all MS symptoms. You are not alone, and it pains me to hear that you don’t feel like your daughter and loved ones understand this difficult aspect. Some of our community members find it helpful to pass along articles to their friends and family to help them better grasp their symptoms if you think that would help.

    Thinking of you, and please know this community gets it and we’re here for you anytime you need.
    – Shelby, MultipleSclerosis.net Team Member

  • mickims
    2 months ago

    Devin, so well said. My issues are not as severe as yours but I can relate. I walk/feed dogs in AM. Got back from walk, stood in the kitchen and could not figure out why I was there. Thank goodness for 2 bouncing, pacing dogs to remind me. And, as you know, for a minute I understood why I was there but didn’t know how to do it. Today wasn’t the best day – and I thank you for your article. Timing, for me, was perfect. Hope your day tomorrow is a good one.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @mickims, I’m very happy to hear this was helpful! Remember, you aren’t alone in this, many of us suffer from these sorts of issues!

  • Shelby Comito moderator
    2 months ago

    I’m so glad Devin’s article came to you right when you needed it @mickims and I appreciate you taking the time to share a bit of your experience here. You are not alone and we’re here for you anytime you need. – Shelby, MultipleSclerosis.net Team Member

  • mickims
    2 months ago

    Thank you, Shelby Comito, this forum is so good for so many of us. Unless we search out folks with MS we don’t exactly run into each other in the grocery store. Having a safe place to speak out is so helpful.

  • bursong1
    2 months ago

    I so much appreciated your article about cognitive dysfunction. It is comforting to know I’m not alone. I had about a 5-year long “brain fog” to varying degrees. Sometimes I would just have a feeling that I wasn’t quite in the moment with some delay to my understanding and responses and slightly dimmed vision to paranoia and hallucinations. Some of these symptoms were likely related to infections, stress, and surgeries I endured during that time. It truly was terrifying and I didn’t realize how bad it had been until it finally passed. It was literally about 5 years. I have had about 2 years reprieve now and I thank God for it every day. I can’t help but dread it’s return, but I really try not to dwell on that! Unfortunately my life did change completely. I couldn’t preform my professional duties anymore due to the potential for danger to my patients. I have tried to replace every minute of my day with some sort of activity that involves my working my brain to try and rebuild what I’ve lost. Multiple Sclerosis can be vicious, but I continue to tell myself every day that I have to wage war against it!

  • Devin Garlit moderator author
    2 months ago

    Thank you @bursong1, you are most certainly not alone! Keep up the good fight!

  • MaryEB
    2 months ago

    It’s quite scary as you stated. I thought it was just me not paying attention to what’s going on around me. In fact I’m trying to pay attention to all that’s going on. When I try to be attentive to the matter at hand, I only hope the blank look on my face doesn’t give away the thoughts inside my head “what in the world are you talking about?” Or better yet being in the middle of a conversation and forgetting where you were going when expressing a thought. I’m not talking a little glitch, I’m talking a total blank. It’s enough to make me not want to offer an opinion about anything, even things I feel very strongly about. Embarrassing is a superficial word for what I’m actually experiencing. However, it’s a relief to know that others are going through the same thing. MS is a difficult disease, especially when “you look great”. I guess looking great is all that matters.

  • Nevadamom
    2 months ago

    Thank you so much for this insightful article. I wish I had known much of this 40 years ago. I knew so little about MS when my husband, at age 38, began having symptoms and yes, cognitive issues were a major concern. My husband was such an intelligent man, and yet, he would sit for hours at our kitchen table trying to figure out how to proceed in figuring out our taxes. (Yes, his focus in college was accounting and marketing.) He worked as the Director of Purchasing for a major company…. and eventually, decided to retire at age 48. Why was this important? Because HE made that choice…. he was not fired, but he certainly could have been. Thankfully, many of his colleagues were so supportive. Looking back, I’m so glad that he was able to make that major decision to retire on his own… In many ways, this decision was difficult for our family but a small bit of his dignity was kept intact. We know so much more about MS today and the more we know and share, the more supportive we can be to those who are dealing with MS.

  • JurdMcBurd
    2 months ago

    Thanks for writing this.
    I have cog fog issues, and I’m currently trying to become a software engineer.
    It takes a lot of work, and my coworkers probably dont realize at all how hard it is.

  • seeker
    2 months ago

    It has been so hard on my self-respect and dignity. I am so concerned others will use it as an excuse to disregard and marginalize my contributions and me. To disrespect my intellect and feelings and opinions, to think less of me. I get to doubting myself, and yes have concerns about independence and reliability. Scary indeed

  • trmason15
    2 months ago

    I always say my brain and my eyes don’t talk to each other. I can no longer manage my own finances, thank God for my sister. I am taking Spanish to work the brain. Audiobooks is the only books I can handle. I am grieving some of the things I can no longer do, work in a job, but filled my life with many activities so I’m too busy to be bored.

  • -Holli-
    2 months ago

    Thanks so much for telling me I’m not alone. I had to stop working my job of 27 years just last month due to the fog I’m in. I am sorry others experience it also, but glad it’s not just me.

  • weezy
    2 months ago

    Hang in there Holli, although I had to stop working after 32 years, I have been forced to find other activities and hobbies to fill my days. Depending on friends and family can help also.

  • -Holli-
    2 months ago

    Thanks weezy.

  • weezy
    2 months ago

    Devin, thank you for your post, as usual you describe so well how I feel and how much I deal with my lack of cognition. Thinking of how difficult my thinking process has become also makes me appreciate the family and friends I have that are so important in my daily life. I don’t know what I’d do without them.

  • abby
    2 months ago

    wonderful article, thank you. Cognitive is my primary symptom. The other day, was starting to start my car, and I put my key in my ear and turned it. Then wondered why the car would not start. So many stories like this. The part about not being able to trust your own mind, your self, really resonates with the terror i feel at times. Love and caring, keep writing.

  • mickims
    2 months ago

    Abby, thank you so much for sharing that story. This morning put fork in recycle and caught myself right before I put empty dog food can in dish washer. Retrieved fork and tossed can. When I put my car key in my ear I sure hope I’ll be with it enough to get out of the car. Thank you for sharing your humor – sometimes its all we have.

  • Mabgardener
    2 months ago

    Not for everyone, but I find my relationship with Quaker meeting to be very important to me. We worship in silence, until someone feels called to speak. We leave silence between people speaking so that we can think about what is said. We’re used to fellow Quakers thinking about what is said even in ordinary conversation before responding. We accept everyone as equals and expect to deal with every individual from where they are. As someone with brain fog I appreciate all this.

  • fremkiewicz
    2 months ago

    As a caregiver, a husband of 49+ years, it is scary. Not just from the lack of memory or understanding, but the idea that I am ever so slowly losing the person I care most about. My life is with Kathryn. I listen to her and realize the love of my life, my best friend, my confidant, and my partner is drifting away from me. That sinking feeling always returns when her inability to remember and or comprehend strikes. Nothing in our family of any major concern has happened without us discussing and agreeing on a course of action. Imagine, if you can, a decision to buy a new refrigerator. We discuss, come to conclusions on brand, price, and vendor before anything happens. Then the day of delivery she panics because, “why do we need a new refrigerator”. So many emotions run through my head and my body I become frustrated, feel blindsided, and once again start from scratch while the appliance is being delivered and installed. Ultimately she will never know where she went and I will never be able to bring her back.

  • Kathleen K
    2 months ago

    This explains everyday for me, I just spent 20 minutes in a grocery store parking lot looking for my car. It was getting ready to rain and I was just lost. I was getting ready to call my husband when I found it. Another problem is I failed the cognitive test horribly that my last neurologist gave me 6 months ago, I scored so low he actually accused me of failing it on purpose. I now have a new nuerologist. I feel like this article, explains it all. What makes me so angry is every time I try to explain to family & freinds, I get its old age, we all do that, it is nothing new.

  • Marko0916
    2 months ago

    Omg Kathleen. The same happened to me. It was about 3 years ago I had a new attack that severely degraded y already degraded thinking problems, so instead of sending me off to a MRI that focused in that part of the brain he referred e to another office that would administer the cognitive thinking exams. The results were so bad he too, as well as one of the 2 people administering the test accused me of “exaggerating” on parts. It was the worst experience of my life.

    That office made my condition even worst. Something needs to be done!!!!!

  • redversrose
    2 months ago

    Great post, CDF (wow I have created a 3 letter ackroyn for cognative dis-function!) only came into my word in the last 3 years but I recognise now how long I was macking allowances and getting stressed by it. It did mean I wasnt able to work in my job any more, working in IT security was a fast pace and multi-focussed job but it has allowed me to switch careers to one more suited. Know your ill and learn how work with it.

  • mickims
    2 months ago

    Wouldn’t it be nice if our docs would ask us about this . Many don’t even realize its an MS problem. I get so tired of walking in hallways heel to toe (which tells them nothing) and not talking about issues of which we are unaware. Thank goodness for this group. I’ve learned more here in the past year than the whole almost 40 years since I’ve been diagnosed.

  • Sbarnes3030
    2 months ago

    Thank you so much for sharing what so many of us are thinking (when our fog lets us). I forwarded this email to my mother and husband so it can help better explain what’s happening, since it’s hard for me to explain!

  • Marko0916
    2 months ago

    Devin, every now and then an email catches my attention, it’s very rare for me to take it a step further and actually read the article. Your post was incredible. After reading, it kind of gave me a sense of closure, that I’m not the only one!!!!

    Everything you wrote is and has been a part of my life since diagnosis 12 years ago, but especially accurate for the last 3 years since another MS attack added additional lesions and past ones got larger, specifically in that region of the brain responsible for my cognitive thinking issues

    I’ve spent the previous three years trying to teach myself how not to get frustrated which in turn morphs to anger.

    I could probably write a book on what I had been through for the past 12 years. Hopefully I will be able to so It could be help others that will be discovering and experiencing everything a lot of us had to discover and readjust the hard way. Thx again

  • Shelby Comito moderator
    2 months ago

    It can be such a comfort to know that someone else gets what you’re going through, and as you can see from the many comments here, you are definitely not alone. Thank you so much for taking the time to share your feedback and a little bit about what you’re going through. If you’d ever like to share more of your story, you can do so anytime here: https://multiplesclerosis.net/stories/ It’d be an honor to read more of your journey, and in the same way Devin’s article was helpful to you, you never know how much it can impact someone else going through similar circumstances.

    Thanks again for reaching out and please feel free to do so anytime. This community is here for you!
    – Shelby, MultipleSclerosis.net Team Member

  • Jason13
    2 months ago

    Why are you doing this? We are 30th in health care and it’s like you don’t care about that. I’m shocked. I know my comments have been deleted but I know you are getting them. There is a cure. There’s been for years. Why? Is it the money? I can’t think of what else it would be. Jack Osbourne did the same thing as me. This place broken. Seriously broken.

  • potter
    2 months ago

    I am also scared to death of cognitive problems. One of my aunts who had MS died of brain shrinkage when she was fifty. She had been in a assisted living facility since she was in her early 30’s. This happened before there was any treatments for MS. MS is so random my other aunt, her sister didn’t have a lot of cognitive problems. I will be 67 next month, unless I have a drastic change I think I will keep some of my brain matter. Cross my fingers! Potter

  • snagy
    2 months ago

    This was such a great post, felt like you were writing about me! I have post it notes as well as reminders set in my phone and sometimes that doesn’t even work for me. I have an app just to remind me to take my daily meds, it goes off, I turn it off and forget to take the med! So frustrating. I continuously asked my family over and over again the same question, now I just say “I know you told me but …….”, I’m very fortunate, they are very patient with me. And don’t even get me started on taking a shower, I’m sure I wash every part of my body at least 2-3 times!! Thanks again Devin, like everyone else’s comments, at least I don’t feel alone!!

  • maddy08
    2 months ago

    Hi Devin,

    I like reading your posts. You describe a very apt view of the everyday situation in an MS patient’s life. I have been experiencing the same issues.

    I also want to share one more thing that is loss of attention and focus. My God!! I am not able to watch some continuosly for say 3 hrs(e.g movie). I start getting irritated and frustrated with whats going on. (Watching a movie was one of my favorite past times, but now I am amazed that I cant do it )
    Also, I have difficulty in focusing. I cant focus to my manager instructions (m like ok say it in concise manner). But then I realise that its something that m not able to process so I keep quiet and try to understand like normal people.
    That is the point I realise that there are so many battles that a person having MS has to fight.
    And the symptoms are also different for everyone. So I really wonder is there any cure for this? like one size fits all type?
    Not right now.
    So hoping for some good research and breakthrough. Continuing going on till then. All the best for fellow MSers too!!

  • mswarrior78
    2 months ago

    Over the past year I have developed more and more of this. I work in commercial insurance and I don’t trust myself to do a job I have been doing for 10 years. I don’t know what to do because I am a single mom of 2 boys. I cannot fight for disability because I cannot go that long without a paycheck. I am trying to figure out what I am still capable of doing and it is the scariest feeling in the world!! Reading this made me sad but comforted because I am not alone.

  • markt
    2 months ago

    Hi Devin

    Well yes I do have the “fog” and more..
    I have been in the shower and just don’t know if I have washed my hair… so I just do it could be again or not I’m not sure
    then as I get out and of the shower I have everything I need to use in the same place so I don’t forget and still
    I have to check did I put on deodorant ??
    well better do that…
    I stop and look and go thru a mental list of everything I need to do in the location that I am in starting from the beginning
    and that’s just small things
    the Questionable decision-making is a hard thing for me now as I’m still working and my job makes it important that I don’t do this kind of thing (I am a buyer) so lists are used all the time
    its a battle to keep up with it all
    I just don’t think ill be able to for much longer but I just don’t want to give it up
    I know many have the same issues with this
    anyway
    Great article as always
    thanks

  • snagy
    2 months ago

    I do the same thing in the shower, can’t remember what I have washed and what I haven’t, So just do it again!! I think we should have a waterproof check list in the shower, so as we do that body part we can check it off, I guess that’s if we remember to check it off!!

  • markt
    2 months ago

    Yes but we would need so many check lists it would be funny everywhere a checklist .
    and that does not help with real time speaking.I talk very little now to people at work anyway as I can’t find the right words nouns especially are tough to find I can’t keep saying you know the big cold thing in the kitchen when I mean the refrigerator .

  • Devin Garlit moderator author
    2 months ago

    Thank you @markt, seems we do have any similar issues. Thanks for sharing some of yours!

  • Sandy Richardson
    2 months ago

    Thank you Devin. I look forward to your posts. You are very good at saying what is in my head, or what is happening to me. It helps to know someone else understands. First time I remember being really confused, I needed turn left and I couldn’t remember how, terrifying! I also get confused reading one of my favorite pastimes. Again thank you so much for your timely posts, I look forward to your future posts. Sandy

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Sandy Richardson, really appreciate you taking the time to comment and share some of your story!

  • MrsG
    3 months ago

    This article was timely as I find myself dealing with constant physical discomfort, and wanting to feel like I’m a part of something … my timing in life stinks, my communication with my husband is lacking he thinks I’m angry when I’m actually feeling overwhelmed and confused. I try to communicate my feelings yet they aren’t being received or recognized. I don’t know what to do!

  • Devin Garlit moderator author
    3 months ago

    Thank you @MrsG, that’s rough. Issues like ours can be very hard for others to understand. I highly encourage sharing articles like this with your husband. For whatever reason, many times when they read about our condition in other people’s words, it hits them more, it’s more understandable.

  • Donald
    3 months ago

    I have some of these issues at times. Questionable decision-making is the main reason I agreed to give up my chosen career. It sucked and I felt like a failure when I left. But looking back I see how much harm I was doing to myself by allowing my work to over stress me.

    Thanks for your articles, I have used a few of them to help me make family members and friends maybe understand a bit more about how I feel.

  • Devin Garlit moderator author
    3 months ago

    Thanks so much @Donald, similar issues led to me leaving work as well, so I understand. It still haunts me too

  • collena
    3 months ago

    More and more I take 2 or more of my usual turns and have zero recollection of where I’m headed to or why I’m going there. It’s not just a “getting old/crs” thing- it’s worse.

  • chong61
    3 months ago

    I actually ventured out to Wal Mart. I got lost in the store and could not find my way. Nothing looked familiar, finally had to get an employee to show me the Pharmacy.
    What an eye opening experience that was.

    Arvilla

  • vvxjr9
    2 months ago

    chong61 – I can imagined the panic that you went through. I’ve had that happen to me before and also have experienced going for a little walk and not being able to find how to get home. I called my husband and told him I was lost and to please pick me up. I tried to explain where I was and cried a bit and had to give up trying to tell him where I was. He did end up finding me crying on the corner.

  • Devin Garlit moderator author
    3 months ago

    Thanks @collena, one of the worst things we can here is “you’re just getting old” or “me too”. It’s most certainly different.

  • StephMS35
    3 months ago

    Most of the article I am with you. I always either do not know after the fact of sonething wrong happening in daily life or I realize that night just before falling asleep(my best clarity comes then to summerize the day + think of what to do tomorrow).
    So therefore I also can not trust myself…ever…and it is scary as hell!!
    After leaving my husband of 10yrs for a crime he commited, I do not know if I can make it on my own. Will I make a huge mustake getting on the bus or crossing the street? These are things I get to think about every day.

  • Devin Garlit moderator author
    3 months ago

    Thank you @StephMS35, I understand your concerns on making it alone (I share those concerns, very much). Taking our time and being extra aware that we might have an issue can be very helpful. Still, it can be pretty scary.

  • Legsonstrike
    3 months ago

    This article was fabulous for me this week!! I have had the hardest time explaining myself and really pissing people off and not meaning to!! I have felt lost all week, actually it’s been longer than that I’m sure but I’m basing it on the last week because it’s been worse than it has ever been!! I climbed a sliding board with my granddaughter and when I got to the top I couldn’t figure out how I was going to get down!! I will never ever do that again! If my granddaughter hadn’t said slide down, Mimi, I’d still be sitting up there, lol. Thanks for this article Devin!! You really are the best at describing our issues, all of them!!

  • Devin Garlit moderator author
    3 months ago

    Thanks so much @Legsonstrike! I understand your frustration all too well!

  • chong61
    3 months ago

    Devin,
    Wow, what an article that touches me.
    When you said “Do you know what it is like to be unable to trust your own thoughts?” “It is horrible.” It is horrible and just no way anyone can understand the extent of how it hurts unless they have been there, done that.

    I picked up on the book deal…..I was an avid reader my entire life. Now, I still try to read and half way through the book I will forget the characters names and have to go back and read enough to figure out who they are. In fact, I just finished a murder mystery and when I read that last pages and the name of the bad woman, I was at a loss, I never remembered that woman even in the book.

    Thanks for all the writing you do, you certainly have a grasp on what MS does to a person.
    Arvilla

  • Devin Garlit moderator author
    3 months ago

    Thank you @chong61 (Arvilla)! Reading is such an issue, yet such an important thing to me, that I’ve actually done a whole article about it: https://multiplesclerosis.net/living-with-ms/cognitive-dysfunction-reading/

    Despite the struggles, I keep trying, working through it. I’ve even made notes on a separate piece of paper when reading to refresh myself from time to time.

  • Poll