Finding it difficult getting information on cog problems. Can anyone point me in the right direction for help?
I asked my MS nurse about this. She said that she would send me some info. She sent me a card that gave me details of a website ‘anitaroseguides’ (with a code to enter to download a specific booklet) and also a QR code that I could scan and get the info that way. ‘Great’ I thought but when I try to get on this site it appears that it no longer exists!!! Perhaps my MS nurse is testing my cognitive skills for herself? Either way I just ended up more frustrated as I was convinced I must be doing something wrong and spent a good half hour trying to access the site to no avail before accepting that it wasn’t me!
the fatigue makes my brain weak!
it makes all of me weak.
the only treatment is fatigue management.
plan short bursts of activity then a planned for rest.
an occupational therapist explained all this to me.
so on days like today when i wake up tired out, i just throw in the towel and go back to bed.
which is what i’m going to do right now.
There are lots of us with cognitive problems, cog fog, brain fog, memory trouble, difficulties with multi tasking, easy confusion, word finding trouble, problems with complex issues, call it what you will, there are definitely cognitive issues that we even have trouble explaining because of the problems.
Carole is partly right, fatigue does make cognition harder, as does infection, but there are very real underlying issues for lots of us that are there when we are fatigued or not.
Take me for instance, I can write on here, there are loads of things I know, remember, can explain to others. But put me in a crowded room with lots of people talking and I can’t make head nor tail of what’s going on. There have been times when we’ve had visitors, I’m trying to direct dinner preparations and have to suddenly yell, ‘will everyone shut up!’ Because I couldn’t think. I don’t go to parties or pubs anymore.
And ask me the plot of a book I read (and enjoyed) two weeks ago and I won’t be able to tell you. Honestly, I could read a book I finished a month ago and it’s all new to me. If I started a book last night and read the first 5 chapters, I will probably have to start from the beginning today (I did this yesterday). It’s not seen as a problem for my neurologist, but I’ve been reading all my life and it’s one of the most annoying things ever. If there’s a series of books, I often have to start again from the beginning when a new one comes out.
I can still manage to do the crossword, I can even manage a few answers on University Challenge. I know a lot about MS, drugs, benefits and many other things, but I can’t watch a TV series anymore. By the time episode 2 comes, I’ve forgotten episode 1. Even if we save a whole series and watch an episode per night, by the third night I have to ask who the people are and what went before. And I don’t remember things I’ve written. I often come across a post I’ve written on here and don’t remember writing it. I generally have to start again from the top of a thread to remind myself of what the initial post was, even when I’ve answered someone several times. (Sorry!)
There is information out there. And you could ask your neurologist for an appointment with a neuro-psychologist. But apart from identifying problems, I’ve not actually had any help. One of my bugbears about neuro-psychological testing is that the test never bloody changes. Once you’ve counted down from 100 in 7s a couple of times, and you’ve never had trouble with maths, it’s too easy to do again. I was told recently that I didn’t have any significant cognitive problems because the little test someone unqualified gave me didn’t pick any up. Even though I’ve had psychological testing that has picked up problems.
The things I’ve done to help my memory are generally rooted in this machine I’m typing on. I keep a diary, specifically for medical things. So I can refer back to what has happened when. I write notes and reminders, with dates and times when I need to do something by. I write shopping lists. I keep a calendar. All of what is on my iPad and phone is linked with my husband’s phone and MacBook. So we can both keep up with what we’re supposed to be doing and when.
Best of luck anyway Prot.
Cheers for the replies. I found this, which pretty much describes me.
Unfortunately my neurologist seems to want to know nothing about cog problems and passed me on to a psychologist who seems to know not a lot about MS.
It just seems no one is actually interested. Frustrated and angry…
Hi again Prot
Yes, good article. It closely resembles some of my cog fog problems. Little things like forgetting your bank account number, which I’ve had for 30 years. Or my NI Number, which I made a strenuous effort at the age of 16 to remember, because I’d lost my initial card notification and had to jump through hoops to be re-notified. And I’ve always known it since then (35 years ago!) but can’t always remember now.
It’s odd as well because the things I have trouble with alter. I just had to mentally subtract 16 from my current age to work out how many years I’ve had my NI No and had to screw up my face to manage to work it out. A stupid little simple bit of basic mental arithmetic!!
And multi tasking is definitely a thing of the past.
How bloody annoying that your neurologist is uninterested in cognitive problems, and the physiologist knows nothing about MS. My rehab neurologist doesn’t think being unable to follow a TV series is important, or that forgetting the plot of a novel matters.
It makes me want to shout, ‘it matters to me’. I no longer have a job which makes me feel confident and fulfilled. He does, so the things that matter in my life aren’t as relevant to him.
I don’t think there’s a solution. All we can do is continue to try and use our brains. Writing on this forum helps me. Doing the crossword is often very frustrating because I can’t always make my brain behave and remember things I know it knows. Watching University Challenge helps, purely because when I get answers that I didn’t even know I knew I feel better about myself.
when you start to answer a question from a friend and then have to poke out the tip of your tongue and say it’s just there.
now hubby knows if my tongue peeps out, that i’m unable to finish what i was saying.
makes me appreciate him all the more.
First thing I do when I wake up is recite my bank details every morning and my email passwords. Then I talk myself through what I need to do for the day (out loud), Then I check my calendar to see what I am supposed to be doing. If I need to get my brain working, I gather all my gardening books and write things from them in a file. It is repetition but it is my learning curve so it keeps things ticking over and strangely, I can remember Greek/Latin names of things but can go out without any pants on and not know! I once took my top off in Asda because I was hot, thinking I had a vest top underneath. I didn’t!
I write lots of things in my file, especially learning things or things that I hear that make me laugh. When I have vague days I sit reading this file in bed and it seams to wake up the memory of what I have written and why. Some days I almost have to go round the house looking in every drawer to try to remember what is where so I have made this a monthly thing. I spend half a day checking paperwork, pants in the pants drawer, socks in the sock drawer etc. It helps me order and re-order and I think in the long term, revamps the memory of what I have where and this all makes it a bit easier. Also, having writing pads in rooms helps for those stray thoughts that are tinkling around trying to remind us that we have forgotten something, so I write all sorts of random things down and usually at some point, it will point me in the direction of something I need to buy or do.
I also have to go back with books and read them from the beginning, sometimes the same day. It is as if that part didn’t exist or has been erased. I like to play the piano, I can learn a piece for six months then go it one day and it is very scary, as I look at a completely irrelevant new piece of music, then I have to learn it again from scratch.
I get words mixed up. My daughter said that when we were watching the ducks by the mere and a couple came to chat, we were all laughing about something and then referred to a duck as ‘s— for brains’ which err wasn’t what I wanted to say. They thought it was amusing, my daughter’s mouth hung down in horror. I also find that sometimes a swear word from childhood pops up when I can’t find the word I want and it comes out. Usually in public, in a situation when my brain thinks one thing and the word is another. Fortunately, most people I come across have a sense of humour!
Sue Might as well have been me writing that!! Thank-you all for your replies above. I have struggled with all of this for a few years now. No one seems to understand or want to help. I am so relieved to find I am not alone. Even though I don’t want anyone else having these problems. Anne
Yep, I feel I may as well go and see a witch-doctor. Might get more joy
Really can’t believe this is such an unknown.
To add to the excellent advice from sue, Cognitive Dysfunction - multiple sclerosis encyclopaedia
An interesting point was made to me today by my rehab neuro. We were (again) discussing my cognitive problems and he said: ‘at least you are aware of the areas in which you have trouble. It’s when you don’t know that you are having trouble with cognition that it becomes even more problematic.’ I thought that was a really good comment. I know many of the areas in which I experience trouble. It’s annoying, to say the least, but I’m glad that I know what the problem areas are.
Sorry for the essay below; a summary of my findings:
- Repair the myelin sheath
- Repair gut health (perhaps with the Best Bet Diet or similar)
- Short term - prepare yourself for slow retrieval of thoughts (similar to slow reaction time)
Thanks for raising this - i will go and read some of the other links posted. I’m sure this is one of those areas which is “different for everyone”. and also one of those areas which doctors wont be interested in because there are too many variables for concrete conclusions from results of tests (similarly doctors wont officially touch any of the recommended MS diets - though my neurologist did off the record recommend I looked into diet). I noticed that I had brain fog a long time ago (years before being diagnosed with MS) brain fog for me being
- general sleepyness,
- no real thoughts in my mind when im not doing anything (i know a lot of people such as my girlfriend have the opposite problem where they are always thinking things constantly at 100 miles and hour)
- occasionally saying the wrong words during conversation
- recalling events differently from actual
- not remembering what i literally just watched on TV.
- having to write down everything all the time to the point where i have a reminder on phone to go to the toilet before i leave the house, brush my teeth etc.
- coming into a room and asking a question and then coming into a room and asking the exact same question moments later (that one used to annoy the girlfriend before diagnosis!)
- the big one was Slow reactions. I did two tests which had very interesting results: the first one is get a friend to hold a 30cm ruler between your unclenched finger and thumb at 0cm mark. then tap you on the shoulder at the same time as letting go. The number of cm down the ruler that you grab it at corresponds to your reaction time. in my case i wasn’t even grabbing a meter ruler (normal people its less than 30cm)
The other test i did (because at this point i thought i might have Alzheimers) was the peanut butter test. close your eyes and have a friend hold a meter ruler beneath your nose with the other end by your knees. Get your friend to hold a teaspoon of peanut butter by the ruler starting by your knees and work upwards. on the first time cover your right nostril and say stop when you can smell the peanut butter. Then do the same thing with your left nostril covered. The theory suggests that normal people will smell the peanut butter at roughly the same distance from your nose. People who have impaired brain (from brain signals being “blocked” by toxins) will have very different distances from each nostrils.
with those symptoms in mind and the two tests; working through with an Occupational Health Therapist all the different types of memory and “memory management” lead me to a small but interesting epiphany; all the memories are there but it is taking longer to recall them than normal person, probably due to the toxins entering my brain masking the electrical pathways.
This is just a different way of thinking about the brain fog but also perhaps leads to finding the solutions. Primarily how do we get the toxins out of our brains? my strategies are this:
Repair the myelin sheath - currently my findings from the web are obviously the DMDs and the superfruit Blueberries (so I have a lot of blueberry smoothies as i find that eating whole blueberries gives me gas from the skins - hint the frozen blueberries from the supermarkets are cheap and great)
Repair gut health - a lot of fad diets are going around about the leaky gut. but for MS people it might not be a bad idea as these food particles getting into the blood and then on into the brain might be leading to brain fog. So find a diet which is good for this. But definitely worth finding out if you have any food sensitivities first (its expensive but i did york test labs and the results were good for me (yeast from beer, dairy and pinot noir grapes for me and I know others who have done the same test for various reasons) this is also different from information you might hear from a nutritionist because they are looking for different things such as food intolerances which is different - we MS people are looking for food sensitivities; things that make your immune system react to it, rather than things which make us have a bloated stomach.
the above are long term “maybe” fixes in short term consider that my thoughts and memories are there but take longer to bring to the forefront (perhaps literally compared to noise on an electrical cable) so some management ideas are stop people talking (if they go too fast) so you can process what they are telling you - here you can prepare yourself some phrases like “excuse my while i write this down” or “you’re talking too fast and my ears are melting”.
If any of the above “chimes” with anyone else’s thoughts or experiences then i would love to hear it.