I am finally going to ask how others deal with this, i have been trying to organize my life so I can function better. But for every step forward i seem to take 2 backwards. I can handle getting my words all mixed up and using wrong words, not finding words. But the rest is not good and its taking me forever to figure out how to make my life easier.
I use my calendar and another note book to put things in, if i remember to put it in..i forget in seconds what i am doing. I also use huge amouts of time running around the house, because when i go to get something, i forget almost immediately, but i don't forget where I am going so i do something else and come back without it,
I had an epidural injection in my neck tomorrow and i cannot have it because i forgot to stop my meds, last time I forgot the blood test the day before. Now i have to wait until Sept.
And its hard to make notes on HOW to do some things. Just as an example...this little town is only a block long and i was going to get coffee, the door said it was closed on Mon & Thurs, and it was always open. I even looked in the windows ..i then wnt across the street to pick something up and told them it was closed. I went out and saw a friend having coffee outside the coffee shop and finally realized after talking a few minutes that it was open.
I had been looking at the shop next door. This a place i have been going to for years.
I do those things all the time and i am not sure I can fix that. But if i could just get the other things organized. It is so weird to work on something so long and make no progress at all. Its so not like me.
I just need some advice on how to do this if anyone has any experience at all with it...I know I am not the only one.
one thing that occurs to me as I read your problem is the more we press our brain to perform, the worse it can behave. When we start expecting ourselves to do more with our brain, it tends to comply by giving us less.
I go through stretches where it just doesn't come together cognitively - Kind of like your coffee shop example. And I'm always losing the thought and that is extremely frustrating. The more frustrated I get by it, the worse the problem becomes.
It is like this is all caught in a vicious cycle, that is so hard to break.
Please look at the side effects of whatever medicine your are on. And while relaxation is obviously not your only cure here, I would certainly try that too. Am I remembering tht you do meditation? Some calming exercises such as that are helpful for the brain to be quieted for a while.
We push our brains so hard, and it needs some rest too!
I've sure not figured out how to fix it yet either -- only good outcome I can think of is that there is a good chance you'll forget tomorrow what you messe'd (I actually had a better word before that 'd - ha/ha) today...lol...
Cognitive issues are in my top 3 list of things that i want back (cognitive, mobility,fatigue) it is the biggest issue that changes ME! I've always been a talk-a-holic, and gringe i'll admit to being 'gifted' verbally and intelectually but i'm not me anymore. I noticed years ago that i started not being able to remember peoples names, my spelling was getting bad (strange) and i seemed to be developing a dificulty in sustaining attention.
I have been very involved in the disability field for over 20 years, with both children having Asperger's & the eldest exstreemly dyslexic as well, i've a personal interest and a tonn of experience. I ended up getting away from the corporate world and focusing on supporting children and families with cognitive disabilities, its been very personally rewarding but i digress. At Easter when my life went pair shaped, the one thing that frightened everyone the most, which wasn't the fact i could no longer walk, it was that i could no longer talk. I stuttered, slurred and couldn't find nouns, following a conversation was difficult and at times impossible, my attention was less than a goldfish so my leasure activity of reading also disapeared, there is more but i wont bore you will all the details other than to say life was quite frightening for a time.
Today, I am slowly recovering some of what i lost, I've had to do it on my own because i'm a limbolander, I thank my lucky stars that this is something i know a lot about, I really dont know what I would of done if I hadn't known about brain plasticity. I needed a plan of action, something i could be doing to fight what was happening whilst i was waiting for the Drs to catch up and dx me :) I am a big believer in 'change what you can and accept what you cant', i'm sure being as stubborn as a mally bull helps!
I am utilising electronic gadgets, anything that MUST be remembered is programed into my electronic organiser (i need someone to do this for me) mine has an annoying beep when something is happening today, then a different beep closer to the time. I also have a white board near the phone, post it note pads so i can stick a note to prompt me. I have the second alarm set to go off to remind me i have to pick up my son from school, and I follow a simple schedule that at first needed to be written down and placed all around the house. Eg. Make lunch, put in lunch box, put lunch box in school bag, wake L at 7 am etc etc. At first i needed my schedule broken down into even smaller steps in order to remember but as my memory is getting stronger I am relying less on minute details.
I also play memory games, in the begining when i lost my nouns, i would describe what it was eg that white stuff i put in my coffee and someone would provide the missing word 'milk' for me. In the car i play a game of whats that word, i name aloud everything i look at, if i cant find the word i stop for a second and start again. I now find when ever i get stuck all i need to do is take a breath and the word will pop into my brain, its still delayed but nothing like it was.
Anyway, hope its given you some ideas but one of the best things is to laugh at your self when you do something 'odd', not to stress or get frustrated, that would make everything worse, laughter being the best medicine :) for these times.
I am so sorry that you have the cog fog. I don't remember who called it that once while we were talking here on the forum ( see I forgot something already, lol). I was so upset by my loss of cognition that I started a discussion here a while back on which is worse the loss of mobility or cognition. I see JJ lists the cognition first and I was shocked how many others agreed with here/ me during the discussion. You are not alone. It is scary and it stinks!
The good news is there are things to help. In no particular order (because that's hard) this is what I have done with amazing results. Less stress (don't laugh), stress and fatigue which we have a ton of make it way worse, more naps, a new medicine made for Alzheimers (there a few), working with a pshyco-therapist (sp?). She helps me to work through my fog and I take notes which I then go back to constantly. Never leave home without my notebook, and learn to laugh at yourself.
This week I had an 8 inch sub for lunch. They offered 8 or 12" and when I was done I was stuffed. I started thinking that if I had only eaten a 6 inch sub I would be perfect. Then I wondered; why do they offer 8" & 12". What are they doing with the 4" they cut off in order to make you an 8" sub. This bothered me all day so I told hubbie and he was like duh, they don't cut the 8 from the 12 they order rolls in both sizes. Months ago I would have been crushed that I was be simple minded but that night I thanked him & laughed.
Good luck & take care - let us know when you find something that works for you.
Thanks so much, i can identify with JJ and Erin, although there could be a difference of degrees of damage, i can totally relate to both of you. I used to say that this part of thr MS i could live with but its got so much worse it seems.
I do laugh at a lot of the thangs I do or say but sometimes its just frustrating...but because i refuse to become stressed i just let it go. And writing it down helps too.
But trying to find out what I can do to help and ways to help get more organized and ways to save some time.....you have been a great helpto me. Notebooks i am tough on. they disappear or get torn up in my bag. Someone must have a line of merchandise for MS or other disabled folks, now I would go for that.
I got some good ideas, thanks...we should post these kinds of thing somewhere..
I too have the frustration of brain fog and get pretty upset over the whole thing. This is not who I was at all. I'm glad you wrote about this as it has been on my mind a lot lately. One of the things I did, when I had clear moments, was to organize all my medical files, emergency info, make a calendar etc. so that everyone that helps me would know where I get my meds, what docs ordered them, and when I need to take them and refill them. I keep copies of everything in each file. It also has all my doc appointments on it. I had my husband check all the info and even though I had thought I'd put everything down correctly-HA-I hadn't. I was a very organized teacher for over 30 years and helped to run my husband's business as well as my own...so, this is a very new part of my life that I am having trouble getting used to.
I do agree that humor really helps and meditation (I listen to music and paint) is really good.
Yesterday a friend took me Rite Aid. As we left the store she went and got in her car and I got in someone else's. It took me a couple of minutes to figure out that she wasn't with me. I thought it was hilarious.
I too write notes...and lose them, go into rooms and wonder what I am doing there, think I've lost my glasses and find after a few minutes of looking that they are on my face.
I also got a tape machine from Radio Shack that hooks up to the house phone so that when docs call I can tape all messages from them and then have someone else listen to them. A doc called the other day...and I forgot to turn it on. Charley.
Same here, although I have always had both brain fog and cognitive issues so I am not sure about the semantics of that one.
My brain fog is days when I feel as if I am in a dream of some kind, like there is a barrier between me and reality and my brain feels like blancmange - ok get me locked up now!!!
My cognitive issues are as yours and one of the main reasons (along with mobility and fatigue) that I am struggling at work. I am a University lecturer for heavens sake, I have not been able to remember my kids names for the last 5 years let alone students. I have lost attention in the middle of a lecture / meeting, forgotten the names of concepts in my specialist area and my planning skills - well don't even ask. Some even laugh and say that academics are supposed to be eccentric - lol.
It is not major to others yet, but it is to me, I have been able to laugh it off at work but the family know how I struggle.
I am seeing a neuropsychologist on the 20th if she gives me any good ideas I will be back to share them.
It makes this disease very hard to live with. Not only do you have the distractions of numbness, tingling, pain, loss of balance, and weakness, but you have to deal with it while your brain isn't working all that well.
The good news is that you can retrain your brain. I recommend daily exercise, followed by computer games like Bejeweled, Big Kahuna Reef, and other 'box popper' games. If you prefer paper, try crosswords or Sudoku.
The exercise promotes neuron growth, and the computer games forces your brain to retain those neurons by growing attachments to other neurons. What's great about this is that you can reroute neurons around areas that don't work as well.
Think about asking your neurologist for a neuro-psych exam. It will evaluate your cognitive problems, and help you find where your brain is damaged.
Another thing that helped me was taking Aricept. The best metaphor I can think of is... it's just like when you've got hard water in your house, and your shower head has a bunch of clogged openings. You turn the water on, and most of them aren't shooting water out, so your shower isn't as productive. So you turn the water up, so that the water that is coming out is at a higher pressure. My brain still had clogged openings, but the Aricept allowed me to think around the clogs.
All of that stuff helped me immensely. I no longer have to take Aricept - I think my brain is working as well as it ever will. I still exercise and play games - I can tell how my brain is doing by how well I do at the games!
I think there is a distinct difference between brain fog and cognitive issue, to me brain fog is just as Pat said "my brain feels like blancmange" but i'm always fatigued when i experience brain fog, I feel its more related to how fatigued you are on any given day. You slow down, sluggish, heavy, tired and rest eases it somewhat, depression, chronic pain, heat, exersion, stress etc making it appear or making it worse.
Where as the cognitive issues for me are totally unralated to fatigue, they are just gone, you had a mental capacity that is no longer apparent, simply lost and as you would expect if you'd had a mild stroke, you can regain partial recovery but its not total. It doesnt matter what level your fatigue is, you can be feeling great but your cognitive abilities are not what they were and you are more aware of what you've lost than anyone else.
You discover you cant for the life of you say your mothers name, childs name, husbands and no matter how much you try the word you are desperatly searching for will not come. A few months ago, i could tell you the names of all 173 students at the little community school i worked, i could even tell you their teachers names, their parents and siblings names etc. since my episode at Easter, I cant find their names. I seem to have lost nouns (why nouns i dont know) but for fun try having a conversation where you cant name anything, its tricky and mentally tiring.
Things you know you know are just gone, factual knowledge that you used in your career is no longer there, you are altered, different and you know it. I dont know if this is the same for everyone, but its this way for me. My theory is that sometimes the damage to the brain signals are only slightly affected, interupted sort of like a light bulb going on and off because the wiring is only a little bit brocken. If that wiring is cut, the light bulb is not going to go on, it needs to be re-wired. Because of this I think its fair to conclude there will be areas of my brain with damage that is only affecting specific cognitive skills, eg nouns, it may not ever be as efficient or the same but in time and with specific brain training it could be possible to re-wire those areas.......maybe.
I find this subject very inteesting i must say...so we can help the cognative issues with things like games and such? was just thinking that maybe I could see someone to help with that...but there are so many things i want to do, talking to a man in PT who supposedly can help with my dizziness. Would love to do massage...and a few other things that don't come to mind at the moment. Everything costs money and am having a hard time already.
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