I know that for many of us symptoms vary day to day as does the degree to which each symptom worsens or lessens. But one of my more challenging symptoms is this: I have noticed that I am having great difficulty making new memories.
I have lost most of the year prior to my attack, and even giant events which have happened since (the loss of my beloved dog of 10 years) is barely a blip on my memory. I've been trying to read (the neurologist said to push through challenges to try to make the brain re-route things), and I've found that I cannot remember from one day to the next what I've read. And many days, I cannot read at all because my brain won't accept the words from my eyes (if that even makes sense...)
I'm very frustrated at the little things it seems. I am grateful for the strides I've made, and even from 6 months ago my husband tells me I'm improved. But as a (now former) college professor, the idea of NOT reading anything new is terribly sad.
My eyes read, my brain doesnt. At first I was so glad I could at least see again. But my eyes and brain sometimes just don’t cooperate, as in a bad relationship. I recognize this too.
Concentration is a keyword but as a high educated professional I (perhaps you too) I never had any attention problems.
A new reality. I meditate daily, focussing on nothing but breathing or counting. It eases me, it’s like a new relation with myself. Perhaps a meditation group (I do zen), yoga or mindfulness course can guide you too? And give yourself a year, get a kind of a discipline or structure to build this in your daily life. Take care!
Hope to hear more or other tips and tricks, if we can memorize these
It's incredible to receive this post this morning, since my husband and I just yesterday noticed the same thing with our son. We had read Harry Potter (he's 7) with him, just finishing the book two weeks ago. Then yesterday we watched the movie with him, and he couldn't remember a lot of the characters or any of the storyline.
Does anyone have any suggestions on what to do about this? Our neurologist hasn't been helpful in this area. He is almost a year into recovery.
I am under the care of a homeopath. The remedy I'm taking doesn't improve my memory but it does seem to improve my clarity during my "energy hours" - if that even makes sense. I was offered Aricept (I think) - the same meds they give Alzheimer's patients, but I really wanted to be able to see what was going on rather than possibly masking it. Also, I'm wary of side effects.
I am making a memory book with my husband's help. Well, we bought the things and made a list, but otherwise it is a plan. Then whether or not the memories come back, I have a reference as to what happened. I do wish I could remember books though. That is a terribly sad loss for me.
Thanks for the suggestions. My counselor wants me to sit still and breathe. I don't do that very well. I like your analogy of the bad relationship. Sometimes I notice my head and eyes moving to scan (say, grocery store shelves) and I realize I haven't actually SEEN anything!
I don't concentrate well anymore and I have great difficulty multi-tasking and process-doing, such as recipes. I got stymied by a box of brownie mix! But again, I'm grateful for the strides I've made.
Thanks again for the suggestions,
LauraK
Lianne said:
My eyes read, my brain doesnt. At first I was so glad I could at least see again. But my eyes and brain sometimes just don't cooperate, as in a bad relationship. I recognize this too. Concentration is a keyword but as a high educated professional I (perhaps you too) I never had any attention problems. A new reality. I meditate daily, focussing on nothing but breathing or counting. It eases me, it's like a new relation with myself. Perhaps a meditation group (I do zen), yoga or mindfulness course can guide you too? And give yourself a year, get a kind of a discipline or structure to build this in your daily life. Take care! Hope to hear more or other tips and tricks, if we can memorize these ;-)
Dear Laura!
Multitasking is an illusion I learnt (which for me was tough to accept as a working mother): it is not only ineffective (you have to divide attention) and inefficient (in the end it all takes longer). And now there is this extra issue of your fatigue. Dividing attention just costs loads of energy. With a mindfulness course (or the helping hand of your counselor) you can experience paying attention to 1 thing at the time. And hopefully you will enjoy this and give your (scarce) energy to things that really matter to you.
I recognize your grocery experience. I once literally fled out of the supermarket, it was just too much input. I could not walk, watch my shopping list, choose, pay attention to other people. Until now my partner does the shopping. Which is a big relief. And somehow loosing the ‘shoppinghobby’ I had, is a nice effect of ADEM.
Things like: putting things back on the same spot, no music and reading at the same time, wearing earplugs and/or sunglasses, sitting in a restaurant with your back towards people moving; during rehabilitation my therapists gave me an extensive list of suggestions which I really use.
And it may sound funny but I was given information on how autist and also high sensitive people recognize and behave in their surroundings, which may help too.
One of the best advices I had is to forget your expectations (on how to become or how you want to be) and try to see yourself as new, like in a ‘beginners mind’.
Hope to hear from you and others!
THank you so much for your suggestions. Without realizing it, I'm already putting most of your suggestions into practice. The multitasking isn't an issue in regular situations, but cooking - that's where the challenge lies... I'm up to two things at the same time, but I usually have a kitchen chaperone after the forgot-to-turn-the-burners-on and still-burnt-the-toast breakfast last year...
I usually shop with a helper. Although technically I CAN drive, I choose not to as that is the ultimate multi-tasking, and it's just TOO much stimulus on my tired brain.
I will ask my counselor about autism. We're already dealing with ADHD issues for the "new" normal.
I am very curious about your ADHD examples. Could you share them here?
On driving I do have similar problems. I am exhausted on arrival and I don’t trust myself neither. So I cycle a lot (that’s easy in the Netherlands) or depend on other people driving. But I notice my social life is diminishing not only because of the limited time but also because of my (non) mobility. Same to you?
Another thing: once I got a hand out on the ‘spoon theory’ on fatigue of a woman who has lupus. It was confronting but very helpful to me to explain other people my daily energy. Maybe to you too?
Take care!
Yes - the spoon theory is something I use every day to explain my situation. Some understand, others don't.
I have a few examples of my new ADHD. One, I tend to have difficulty focusing on anything, but then when I do, I tend to fixate. For example, I think of a CD or DVD or piece of paper that I MIGHT need, and I will get out of bed in the middle of the night and dig and search until I find it. Or else I cannot sleep.
I also struggle with OCD issues: picture straightening, cleaning (when I can) - these have become very bothersome because I cannot focus on anything now with a cluttered desk. This was never the case before.
My social life has also diminished. Partly because of my energy level and ability to go places, but also because so many people have just disappeared since my illness. A sad commentary on society. My socializing tends to be with people on Facebook now because of that.
Hi Laura - had completely the same problem with memory. It was like my brain was hitting a wall when trying to remember new (but older memories or knowledge seemed to be retained).
I'm almost two years out and without really noticing when things seem to be getting better. I've noticed that I can remember a lot, lot better, and I'm noticing noticing if that makes sense - after two years I was resigned to it being forever but thankfully it looks like it's not the case.
Your neurologist is right, the brain is miraculous at re-mapping so you keep having to exercise it and it will get better. I've got a very research heavy job so I think that kind of intensive or detailed reading does help a great deal.
I am making miraculous strides (considering the attack almost 2 years ago) but impatience is rampant. I hate that entire months go by and I don't even remember them happening.
Lumosity seemed like a good idea, but my neurologist pointed out there are free games out there, so I play a memory game, Scrabble, a logic game and a strategy game on Facebook to try to keep pushing those boundaries. Some days I see great progress, others I feel like it's two steps backward. But it's all process. And patience. I hate waiting...
We are in our 10th month of our struggle with ADEM. My 16 year old son used to be advanced placement in High School now is working really hard in regular classes. He used to read an assignment and understand it and complete it now we sit and read the assignment discuss what to do, I leave him to do it, he can't do it, he does an assignment that pops up in his head, then re reads the assignment and realizes he did it wrong and does it again this time also wrong. YES the ADD symptoms and focusing problems are a huge issue. The Dr proscribed several ADHD meds but that made his head aches worse and in reading about ADD meds with ADEM or MS they often don't help.
So we use audio books as much as possible, use friends as tutors as much as possible, reread assignments while we are working on the, make lists, and drop the un important stuff.
For me, if I have work I have to focus to complete, I try to do it when I'm my best, which is late morning/early afternoon. It also has to be the ONLY big thing that day. You only have so much focus/energy each day, and trying to do it when you're already tired is like hitting a wall over and over again.
My neurologist has suggested though that I keep pushing against certain walls (like reading and remembering) in order to get the brain to create a new pathway. I'm still hopeful.
Best of luck. Make sure you keep his school in the loop - they probably have little experience with this type of brain injury/recovery process, so it's important they understand.
