I have had cognitive issues for over forty years. I could never follow written instructions like on tests in school. I could not read I memorized everything. My teachers thought I was lazy.
I was a HVACR mechanic and I had a heck of a time following written instructions. Because I was female people thought I was stupid. Yesterday I installed a thermostat for a friend and boy did I have a time following the instructions.
When I get in the car I have to really think about what gear I need to be in forward or reverse in the driveway. I sometimes leave the car running with the keys.
Sometimes I leave the stove on. Mostly I forget to eat at all.
I have learned all my life to do things in sequence to remember. Of course medications I take for pain can make it worse.
Sometimes even speaking is difficult. I actually get headaches from trying to have conversations it is so hard.
I have learned to not be embarrassed by it and to ask for help. My husband is great. So are strangers for that matter.
my cognitive issues have gotton to the point that I left work in late Febuary I work in a pharmacy and when you cant add 2 plus 2 together then you shouldnt be working. I am glad that I have an electric stove because I leave it on or I turn the wrong part dam cant think of it but I am glad its not gas and I leave it on. when I get in the car I always have to make sure its in reverse or park usually double check before I let of the brake driving is difficult I avoid highways and I try to tell my husband that its too much info to process you have to make sure you are in your lane that the cars around you are ok and if there is on coming traffic then thats even more info .my sense of perception is off too and when I am drib=ving or even a passenger it makes me nervous because it feels to me like we are too close to the curb or to close to the othether cars even though we arent. speaking is difficult I start to stutter if I am in a long conversation or I just lose my train of thought al toghter.have you ever gone in the bathroom sat on the toliet and forget why you are here? I actually have to concentrate to void otherwise I will just sit there . this cognitive issues have affected me more than the physical ones and I am stuck in limbo and the doctors just dont get it .
I have had more problems lately and they are disturbing. Was driving to the vets to get my dog and turned into a store parking lot, one I don't even shop at, instead of going to get my dog. I noticed right away and left to get dog but that was odd. Couple days later I was heading to a meeting and knew where I had to go but didn't turn where needed to get there and didn't notice until 10 minutes later that I didn't turn. I took an alternate route but still very disturbing. Especially since it was twice in one week. I can ask someone a question and then ten minutes later I guess I ask it again because I am told that I just asked it. I didn't remember and didn't remember the answer they gave. I also don't remember day of week. I have to check calendar to remember sometimes.
Scary I don't talk about this much. I am still working full time and worried about this.
I forget the day, time, how old anyone is or how old i am, how to drive, how to cook something i've made a million times, words, how to spell, how to sign my name, how to open the front door etc etc but the one thing that screws with my brain big time is when i forget the names of people i should never forget, eg my kids!
I dont forget exactly, forget isn't really right because all the information is still there, it just takes a while for my brain to find the information and for me to put it into action when it finally does arrive. This isn't a 24/7 forever type thing, its sparodic and comes in blocks of time, gets really bad when i'm in an episode but gets better, not perfect, just better when i'm not.
I have a lot of cog issue, to do with sequencing and word retreval and if i'm tired from going out its more evident but what your talking about is much much more than that. Everything i've ever read and i've read a lot about cognitive issues in MS, something feels wrong about the picture you've painted. Are you sure you are talking about 'forgetting' how to get up steps? Its possible that its not that you dont know how to (sequence) but your body isn't cooperating with the unconsious comands your brains giving it.
What i'm getting at, is that to not know how to do something is one thing but usually through trial and error a person can nut out what to do, even if they are experiencing something for the first time. Your saying you dont know how and can't even work it out with out step by step instructions, that goes way beyond cognitive issues. It makes me wonder if you could nut it out if you literally took a step back, took a consious calming breath, thinking through the steps and if necessary talk your self through it if the physcial action is still slow in coming. This gives your brain and body time to get insinc, a reboot if you will. It also gives you a plan of action so you have something you can do when its happening, which will help shut down the panic if you experience that too.
Regardless, if you haven't already, I think this is something vitally important to speak to your doctor about, it feels outside of normal MS cog issues and it needs to be investigated soon.
You're right, I believe I could possibly "nut it out", as you say.
It's a frightening experience, and people (even spouses) may not immediately understand what's going on. So, you tell them what is going on, and in order to "speed things along" they help you, by telling you.
It's that immediate response, "yikes I should know what to do", and a "freeze of confusion" because it should be "2nd nature"
Yes, cognitive troubles, for me, include speech.
"Word stix", as I call them, where you get stuck on a word, and keep repeating it, even though you have words that need to follow, but can't until you get past that word.
Also, and just as frustrating, is when you can't get a "specific word" to come out, and after a few attempts, you switch to a different word (or phrase) to get your thought out.
Forgive me for saying this, but it makes me feel a bit better to know, that other people experience the same things, that I am. Not that I would wish this on (or condemn anyone with) these experiences.
Thank you, for your responses, it helps me a lot.
Take care and may God bless, you and yours.
I've had some moments I'd prefer not to have had!
More than once I have driven home at night. When I shut off the car in the dark, all of sudden I have no idea where the door handle is in the car!
The other night, I was getting ready for bed. I was half undressed and then my brain went dead. I stopped to consider the moment, and since I was half undressed I figured I must have been in the process of getting dressed! So I started redressing until my brain figured out it was bedtime! My kids got a kick out of that one!
Now I dont' know if this third one is cognitive or not. It seems at night when returning from the bathroom I can't find the bed or the walls.
These things really freak me out. I'm young (well almost) and don't want to start losing my mind.
It can be a bit of a bugger to be small, my DH just picks me up and plonks me where ever I was trying to get to lol sometimes there is a fine line between 'helping you do' and 'doing too much for you.' Dont get me wrong, I am immensely greatfull for the help when i need it but there are times when i really need to be doing some things for my self because my brain really really needs the re-wiring.
The one piece of advice i can give you for the next time you experience this (and there will be a next time unfortunately) which is to shut the fear and confusion down anyway that works for you. I figure if your brain is focused on the 'oh crap oh crap oh crap' it's not going to be able to also work on what the problem actually is, emotions just get in the way of getting your brain to work.
What works for me now, is to never be suprised enough to get freaked out, i've come to expect the unexpected. In my head my first thought is ususally '$%@$ not this again' but I do know from experience that if i give it time, it will work, maybe not as i'd like but work it will. I do take a calming breath to mentally step back and get control, i then think the process through, that is often enough for brain and body to get back insinc, if its not i start again and I keep doing it untill it works because i know eventually it will!
I sort of do the same thing with the word issues, I know the only way to get my brain back on track is to simply stop talking, pause for a count of 3 and then continue talking, trying to push through it never seems to work. I learnt this a long time ago using cured articulation techniques with a child with speach issues. Funny but it actually works!
Find something that works for you and tweak it every now and then, it will get easier, I promise! :-)
a special agree to ccorina!
I too, after havng my truck for over 6 yrs, cannot find the door handle to get out and then I go into a panic mood, hubby doesn't understand it......it should be 2nd nature after 6 yrs to reach for the handle! Glad I am not alone but not glad others have this problem
I go back and forth on having cognitive problems. Some days I feel like things are working fine, and then I get a reminder that no, they're not. When things were really bad I lost a lot of language skills - from names to nouns to just being able to put sentences together. I'd start a sentence and then forget what I was going to say. I don't really remember all the problems, because my brain wasn't storing memory! I lost most of 2007 and much of 2008.
I think it has a lot to do with lack of dreaming. Dreaming is when you move the memories from short term to long term storage, and somehow that process wasn't happening.
I seem to remember having procedural problems - cooking was a big one for me. I just couldn't make things work - from gravy to sauces to just being able to time everything right - it all went out the window. And I would start things and forget that I'd started them. One time I had to refill a pot of water and start it boiling, because I kept forgetting and the water kept boiling off.
It wasn't until I got on Aricept that I got my dreams back, and then started tracking better from day to day. Things haven't been that bad since, thank goodness.
I dread its return. Right now my legs are giving me problems, and I'm having these myoclonic movements, but at least the brain kinda works. I'd much rather have leg problems than brain problems.
Oy. Cognition change is by far the most disturbing thing so far .
For me, I have become allergic to coordinating logistics-- I get overwhelmed and "stuck." From projects as specific as making travel arrangements to the basic daily task of making dinner-- cooking especially has become such a challenge-- and I've always been good at it. There's just a lot of timing and multi-tasking involved in the making of any meal-- I've been surprised by how difficult it's become.
memory: forgetting, short term memory. forget about putting anything on a stove for long!!
speech: loss of words, stuttering, i find speaking a chore vs something natural. and i go off on tangents just trying to explain simple things. i quit talking in aa meetings i just find it difficult, and i can't even explain why. i talk more in ms meetings but not much.
attention span: has lessened
reading: takes way too long. and i forget what i read at times. will get books on cd soon
completing tasks: am i too tired? too boring? procrastination? i don't get it. some of it is procrastination but a lot of it is not. i think we know some of the differences
mazes: new places, buildings sometimes will make me feel like i'm in a maze. not a funny maze but a frustrating maze
and of course VA docs say "your getting older". let me put that in context, the VA started that saying when i was 32 also. so it pi$$es me off more than humors me.
i don't notice all this as much at home alone. i really notice it when out and about with people around.
hi! well yes, its bad at times but it gets better, then il have times like you and i cant figure something out i have done lots of times,but i get better, it doesnt stay lol
somethings id like to forget!!
Some of this falls under the category of "vu jade." This is considered a "significant neurological symptom." It is the feeling when doing a routine task that you have never done this before. It can be related to partial seizure disorders. When doctors blow you off, try describing it as: "It's like vu jade. I've done this a hundred (or a thousand) times, and it was like I had never done this before."
Maybe that will wake up the doc and remind him/her what they were taught.
I find I will go to one room to do something, then I think of something else and go to another room, then I forget that I didn't do the first thing.. just doing dishes (a few) is a real chore for me. If I can get that done without breaking anything it's a good morning.
I don't remember days, months, years. I always put this down as old age (57), I ask questions that I just asked a minute ago, I forgot I asked it already. This drive my hubby nuts.
I find just spending a day at home tires me out by 2:00 and I need a nap. I hate this MS thing and wish and pray something gets better.
I know it sounds awful but: I'm happy I'm not alone in it! I've been diagnosed 6 (or maybe 7) years ago and have been on interferon ever since. My MS seems to be more cognitive than physical (I'm almost fine physically, never had major issues).
My neuro suggested that my MS moved from RR to Secondary progressive and it freaks me out. I'm to start tysabri soon as it might be more efficient on cognitive problems (any thought here?)
But to my problems - major thing is that I'm trying to finish my PhD which means that the main thing I need to work is my brain ;/. I suffer from serious fatigue, vertigo, dizziness, and lightheadedness (yap, it's all "in my head"). I've used to be a rather bright kid which is not a case any longer (and not only the part of being a kid - I'm 32). My concentration spam is really short, I forget things I read even before I finish reading them. And of course memory - I read things over and over again not remembering I've already read them (I take notes that's how I know).
I have no idea what to do; I think I entered the constant panic mode. I somehow need to get through this and finish my dissertation. And there is also explaining WHY I'm not done yet (it's taking me forever). I think it's time to tell my advisor I have MS (haven't done it yet - I honestly hoped I could menage).
Do you think it's common to have MS developing only (or mainly) in cognitive way? Sometimes I think that I'm just lazy or getting crazy or developing hypochondria... My brain is/was my main asset and seeing it deteriorate just freaks me out :(.
Sorry for the long post but I had to vent (it's so difficult to tell people that you're not just making it up; if it cannot be seen it doesn't exist)
Thank you for sharing,