Does anyone with APS (Hughes Syndrome) have any suggestions for improving memory or concentration?

[Tomcat]

This past year or so I've noticed that my memory and my concentration have just completely gone to pot. I recently started a new job that was very complicated to start with, it was related to learning a new computer system, this was something that in the past I would have had no problem with at all. From day one I struggled to get to grips with it and realised that something that would normaly have taken only a couple of days to learn has taken me nearly 6 weeks. Is there anything I can take that will help my concentration or memory?

[daisyd]

Hi, horrible isnt it, I feel like that too, although much better but not perfect on warfarin, am I right that you are only on Asprin.

I would see your Gp and ask for a second opinion you are intitiled to one.

Physical exercise is good

[stillwaiting]

Hi - I do feel better now I am taking warfarin - the brain fog is more of a low lying mist now So maybe a chat re your meds might help?

Here are some of the things I do to help with concentration and memory - they may seem daft but they help me.

1. Try not to get too anxious - I am worse if I stress or "try" too hard. I am trying to accept that I forget an awful lot - to be honest forgetting holidays we have been on etc was really upsetting me - now I try to accept that the memory is gone and ask people who were with me what happened - this helps a lot - I do find that I start to remember odd bits and pieces as they chat

2. I live by lists - a blackboard in the kitchen, a small diary for my bag. That way I feel that I don't have to fill my head with stuff I must remember - this clearer head then helps me concentrate on the job in hand. I also have a "master list" for stuff I do often - like in my laptop bag I have a permanent mini list of all the things I need to take with me - like charger, memory stick, the names of the software etc.

3. I have what I call "Noddy's guide to ..." instructions. For instance I am working for my husband at the mo with computer programmes which I have never used. My instructions are literally" press this button ...." etc. but it gives me huge confidence because I don't have to remember what to do, I don't have to ask for help and more importantly I look like I know what I'm doing!

4. Try to be as uncluttered as possible. When I was teaching I found that some children could concentrate for longer and could hold onto more information if they were working at an uncluttered table. I also cut distractions like music sometimes as there are days when I just can not cope with other stuff as well as the job in hand.

5. I try to challenge myself and my memory and to exercise it. So for example if I need to do say 3 errands I write them down just in case I do forget and then I think - right there are three things I need to do - I use a mnemonic like a word so stamps, apples and dry cleaning would be SAD!! And if I can not remember I just resort to the list but don't beat myself up about it.

6 Daisyd is right about the exercise and I also try to do crosswords and general knowledge quizzes. Suduko would just drive me nuts so I don't do those. I try to keep all this as stress free as poss.

7. I concentrate much better if I just work in short bursts with mini breaks in between.

As I said all a bit daft maybe but they work for me!

Lynn

[MaryF Administrator in reply to stillwaiting]

I am also a list writer.... as I forget regularly most things.. however once I have written a detailed list, my husband then goes off with it, and rings me from work to ask me what he is supposed to be doing! He does NOT have APS!. Mary F x

[stillwaiting in reply to MaryF]

Funny When I am really really bad my handwriting is even worse than usual - so I can not read my own list. But......my son could always read my writing - but then he went off to uni - so I was well scuppered!!

Lynn.x.

[CanaryDiamond10 in reply to stillwaiting]

Maybe you could get a dictaphone (little tape recorder) and instead of listing via writing, leave yourself a message verbally on the tape recorder and play it back as many times as you need to. Here in the States you can get them for $30 at Amazon.com.

[Mair in reply to stillwaiting]

Great advice! I find that exercise is a big key, increases blood flow to the entire body including the brain. I'm going to try the list ideas. One thing I've found very helpful with computer programs is just doing the same few things over and over until they're imprinted in my brain and then go on to the next steps. Boring, but it works.

Now I wish I could recall movies I've seen. Can't for the life of me recall a plot, who the actors are, or even if I've seen the movie. Oh well, guess that makes it easy for me, don't have to always be looking for a first-run. I can watch an old one and think it's new!

[stillwaiting in reply to Mair]

I too forget film and book plots - but I find this can be advantageous on a bad day - I can rest quietly and watch a good film & really enjoy it! After a "flare" my reading can be very very poor so I start with a well loved but largely forgotten book. I have a small stock of favourite DVD's and books and they bring me a lot of joy even though I must have watched and read them many many times.

Similarly at Christmas when the kids come home and get out board games I have to have the rules of the game explained every single time!

L.x.

[Hidden]

Yes, memory problems seem to be an ongoing feature of APS despite being treated on anticoagulants, so I'm afraid it's often a matter of trying to organise yourself VERY well! Lynn's list is extremely helpful and you can download our charity's Factsheet 'Managing Memory Problems' which has a few pointers: hughes-syndrome.org/resourc...

[stillwaiting in reply to Hidden]

I have just gone to the link - thanks Kate - I read it when I was first diagnosed but hadn't referred back to it as much as I should have.

Sadly I think I might be in the "severe" category as my speech is often slurred, as I said above I have forgotten holidays and yes I have forgotten the route to somewhere I go to each week. Re the latter my GP said not to worry too much so long as you know where you are trying to get to. When I forget a route I just think "it'll come" and it always has - at each junction I have known the way to go - it's just relating the whole journey that I would not be able to do but junction by junction , I am fine.

On our feedback at the Patient Day where we were asked the sort of thing we wanted more info on mine was most definitely memory.

Lynn.x.

[Hidden in reply to stillwaiting]

Yes, I do know of other patients who have forgotten entire holidays and I think forgetting routes is pretty common in most of us - I have exactly the same attitude as you to planning a route - just go along and see what happens!

Thanks for the feedback on memory for the next Patients' Day - I will make a note (otherwise I'll forget!) and see if I can find a speaker from a memory clinic. The problem I find with getting different speakers is that they can be an expert in their field, such as migraine, but they have no link to APS - but I will try

[stillwaiting in reply to Hidden]

Oh I meant to add - lol - I forgot

My consultant said that once I was on warfarin my memory may improve but it would take several months. However it may only help with the memories I make since taking the warfarin and stuff before taking warfarin may remain forgotten. It all seems very vague and may be -ish and I have to say that much remains lost and forgotten though others reminding me of holidays etc does bring some odd bits back.

Being told about stuff you had forgotten is utterly bewildering - I feel totally disorientated and lost. Then I feel utterly depressed that my brain has let me down ... again.

But then there are days when I do remember stuff and then I feel utter elation.

My APS brain can be totally brilliant and bewildering - all in one day

Lynn.x

[Hidden]

Same here - also I wouldn't be able to go to any meetings without the Maps facility, that's been a life saver for me when negotiating routes to different hospitals - I don't think I'd have ever found UCH without it ... weird building, weird place!

[Coppernob]

APSnotFAB, I think you turn on Google Maps (and GPS) in your phone and then there's an option to put it on speaker? I haven't tried it myself on my Samsung yet, but my partner has a similar Samsung (Android) phone and does that sometimes. Very robotic, bossy woman telling us where to go (literally!) but it does the trick.

[Hidden]

Yes, it's a feature of the iPhone 4 and upwards I think. It's great as all you have to do is key in the destination post code, click Start and it talks to you the whole route. One warning though, it does eat into the battery enormously so is not so useful for long journeys unless you can recharge it.

[lemroc]

Being a student trying to learn masses of anatomy, how complex medical equipment works and remembering computer programs I have found drawing really good for remembering things especially with colour. My drawings are pretty atrocious however I found sticking them on the fridge/furniture really useful. I occasionally take photos and set them as the wallpaper on my phone as I consistently check the time. Currently I have a drawing of the inside of a MRI scanner slightly boring but effective.

[Herb]

Talk to your APLS consultant about it as it may be that tweaking your INR might help.

Have you had an MRI scan and what did it show? You could ask for a referral to the following specialists who may be able to help:

Neuropsychologist for cognitive testing; health psychologist for help with anxiety and mindfulness meditation; occupational therapist for managing fatigue and coping with chronic illness.

[danaja]

When the brain is injured there is cell death and an area around the injury that goes quiescent. Or quiet. I found that it takes about a year to 'recover'. With no new damage. So find a stable Inr. After that it kind of is what it is. The brain will build new routes and form new synapses if it is encouraged. There is the potential for nerve damage and it can be progressive. Games and puzzles help. Scrabble helps. Tetris. And music if it is densely mathematical like classical..also, no substitute for rest, get as much as you can. Quiet helps. Even cold compresses on the forehead. I think some of the fogginess is due to inflammation of the small capillaries. For me, the part of my brain that suffered involved critical thinking skills. Language. A lot of memory loss. So complex chores remain a challenge. When working on a difficult project, a quiet environment with no interruptions helps. Walk away for a few minutes from a task then return. Get a GPS that not only talks to you but that you can safely view. I stopped driving for a while. I was diagnosed in 2003 and have had extremely high markers or titers since, and have found that in order to get well and stay that way, I have to be proactive, even pushy and mostly manage my own care. ( this site, or rather the old one was critical in providing the right info) I home test. I manage my own coagulation. (sshh). I stay in range. 3-4. Slightly higher is not scary if you have this thing. This is the most important thing. I have all the specialists. This thing is systemic. But.. They're not that useful. I have a good neurologist. Mostly I have a great GP who helps me figure out the important questions.

I know how confusing APS is at first. And finding competent care IS difficult. I work full time 50 hrs a wk. in a dynamic demanding environment. I work and I take care of my illness. It's really hard sometimes. So for all you newbies who wonder if you will ever get back the life stolen from you... I say you can get back some of it.

[Lure2 in reply to danaja]

Thank you Danaja,

for that accurate answer- I agree with you that the memory can improve.

And I selftest and it is important to keep the INR high enough. I realize that more and more. It was so positive to hear you talk about this illness-

I thank you again!

Kerstin

[danaja in reply to Lure2]

You're most welcome.

[windsorGirl]

Hi Hughes Family I have been reading how everyone seems to have some memory loss, now I feel better knowing I have an excuse .Ha Ha. I am only taking aspirin ,maybe I should ask my Dr about Warfarin.

[Hidden]

Keeping routines is key. Always put keys in the same place, purse, coat, etc... Have a place for things so you won't forget. I also follow most of the advices posted above.

Does it work? Well it helps. Lately its bad. Real bad. Back in late 2008 and ealy 2009 it was also pretty bad (worse now I think unless I just cant remember lol), but it did subside for a couple years and I was very productive.

Today I tried to think of a friend's name (good friend) and literally had to search my facebook friends list to find it!! Yesterday I forgot my checkbook at the bank... I also forgot my wallet here at home when I went to the bank and was lucky its a small one and they knew me or I would have been hoofing it back home just so I could get money!