I wonder if anybody can give me some advice. I have had BI since 2013 which affects mainly my short term memory, but I also have bouts of confusion. Some days i am ok and things seem to be getting back to normal. Then the memory loss/ confusion comes back.
There doesn't seem to be anything that sets it off, it just happens. I maybe doing something then I completely can't understand what i am doing or I may go into a room to get something I get there and can't remember what I went for then a couple of hours later I remember!!
I try to go for a walk as I have diabetes and Neuropathy and when I am out I cannot remember where I am going or I can't remember where I live. I have to phone a relative or friend try to explain where I am so the can pick me up in their car. I find that really embarrassing. If I cook when I am like this I have to write down to turn the gas cooker off, as I have left it on a few times and when I see it I can't remember it was mine. I try doing crosswords but my mind wanders, so they rarely get finished. It's driving me mad. Any advice would be appreciated
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jimboriley52
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I am wondering if you have ever been seen or assessed by a NeuroPsychologist? I think a referral would be helpful or a re referral as they would be able to clarify your difficulties and help you with strategies to manage. Especially if you think that things are getting worse. I do think it is usual for abilities post BI to fluctuate and I know for myself being fatigued, cognitively overwhelmed etc has a big impact on my abilities.
hello there...I have something very similar to you, i spent 2 years trying to find a pattern to the issues, all a waste of time, what i did learn was that its totaly unpradicable, and unreliable, i also learnt to accept this and to cope by using my diary, postits, a voice recorder and a CADEX alram and reminder clock..
have yu joined your local headway group? or seen a counsellor who specialises in such conditions? i found all of these helped...
You don't say where your BI is or the cause but this may have a bearing on the symptoms you have. Mine is a tumour in the left medial temporal lobe.
The symptoms you describe are pretty much identical to the ones that my neurologist has diagnosed as complex focal epilepsy. The best thing would be to try and get to see your neurologist and if possible take along someone who knows you well and has witnessed you during these times. Try to write down what happens, when and anything that's likely to start them off so you can tell the neuro I often forget when I'm in front of him exactly whats going on which is also why it's good to have someone that knows you really well with you.
As Stawberry has already said a neuropsychologist may be of help too, helping in putting strategies in place to make things more bearable.
If it should be epilepsy then most people can gain pretty much full control with medication.
Hoping this is of some help but can't replace proper medical advice.
I do the same, not so much the confusion but the forgetting I'm cooking, what I went in a room to get, whether I've fed the dogs etc. I was getting really frustrated and angry so I spoke to my headway counsellor, she advised alarms on my phone, list writing and when I go to get something to keep repeating what it is until I have it. I have a list of things I need to make sure I have with me on my front and back door so when I leave the house I can do a quick check, I have a dog feeding tick list, I get the morning feed ready before I go to bed, I verbally tell myself when I have switched something off. I write pretty much everything down that I need to remember. If I get angry I go to a mirror and ask myself if it is worth getting angry about. So far so good. The key, I have found is to not put to much pressure on myself or be so hard on myself x
Hi
I agree with other writers
I persuaded my GP to refer me to the Neurologist at The Hospital who confirmed short term memory loss
I have found playing computer games such as Jewels etc helps
Best Wishes
No professional has confirmed ANYTHING to me in writing they just prescribe tablets. I know what I'm struggling with but can't SAY/describe it properly, though try.
And yes, I vary. And no I can't often find a reason, seems random often. No GP and get fobbed off every time. Hurts BAD.
Signposting and passing on, get dumped. Feel VERY sick today.
Makes me feel totally unwanted, useless, hopeless. Try SO hard to block that out but very difficult when FAIL all the time at nearly everything. Not my fault but makes me feel like it is. And therapy woman says I mustn't blame OTHERS = I do try hard but others should meet me half way and try as hard to accept how I am and my limitations as I'm trying to but also trying to push myself.
Was proud some years ago what I achieved but even THAT denied coz oh 'nothing went wrong' during my bungled op.
VERY worn out, worn down by it all. But apparently I'm exaggerating that too. I'm not.
Can't MAKE docs talk to me, examine me properly, write the truth, SEE things which are easy to see. And no point complaining = SICK of trying to do that and SICK of 'replies' which say nothing. Pointless and waste time energy. But I need what we ALL need, unsurprisingly.
I do the same - the problem is generally distractions meaning I can't keep a train of thought. Here's my latest example....before I went to bed about midnight last night, I let the dogs out. I went through to the bathroom to brush my teeth, and our collie opened the back door and let herself in. I came out of the bathroom and noticed she was there, so I went to call our Jack Russell in. She didn't seem to come in, so I went back to the kitchen, and there she was, already snuggled under her blanket - she must have snuggled in and hidden herself away whilst I was doing my teeth. Much relieved I went up to bed.
My husband came down first thing this morning and found the dogs outside in the garden and the back door wide open!!!
The only way to get round this situation is to focus on doing only one thing at a time. I should not, therefore, have tried to let the dogs out and brush my teeth all at once. Now that is very well in principle....but I seem to have a problem remembering it!
Seriously though, apart from all the usual memory joggers, (I have lists, lists of my lists, post its, calendars and diaries everywhere, and lots and lots of reminders on my phone) this thing about not overloading the brain with too much information seems to be key. I am fine if I only do one thing at once. But I cannot, for example, cook and listen to the radio. Do anything and listen to the radio, actually.
This is where the lists do come in helpful, because I will do one thing, then go back to the list. And they get more detailed all the time - so for example 'Do washing' these days is written down as 'Put washing in machine' followed by 'take washing out of machine' and then 'hang washing on line' and 'fold washing and put away' because otherwise it gets stuck at various stages, which means I either have very smelly wet, washing, or piles of stuff hanging around the house. I'm not naturally untidy, I just forget what comes next all the time these days...
Hope some of that is useful, if not it may at least make you smile or feel that you aren't alone in all this!
Malalatete Thank you for your reply, yes I know what you mean about writing everything down. I use my phone a lot. I put my alarm on with a note of why it's on when it goes off. But it's constant. I was replying to your post and had to go the toilet. Then it took me about 20 minutes to remember what I was doing before I went the Loo
I can never remember what it was I was just about to do before nature called and meant I just had to go and do something else...maybe that's the core of the problem - too many loo breaks!!!
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