Sticky Blood-Hughes Syndrome Support
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Cognitive and memory issues

My brain doesn't work properly and I know that so have developed some strategies, but not enough I think. The thing I find hardest is dealing with information , either misreading words or not following what has been said. Customer service ( not how I would describe it!) on the phone is a nightmare. Yesterday I had to phone and ask for a service engineer which just about managed, then a car insurance company- nightmare! My neighbour damaged my car two weeks ago and I am trying to get it repaired through his insurance. They are utterly incompetent. My long suffering husband checked the latest letter from them to see if I had misread it but I hadn't. I was so mentally exhausted by then that I fell asleep. Am going to try and put down the facts so can make a complaint if I need to but my head swirls round and round trying to make sense of it all. It is not until you experience memory and cognitive problems for yourself that you realise how mentally and physically exhausting it is.

12 Replies

I appreciate all that you say here. Now I can write again I do write things down a lot. For something big/important as you outline here I write it down bit by bit with lots of breaks in between. I find that my subconscious seems to carry on thinking through a problem way after I think I have stopped trying to work it out. When I come back to it, it can often be clearer.

I think we have no idea how complex the brain is until something like this happens.

I know this sounds odd but when I have done something like a difficult phone call etc I actually tell myself that that's another thing I have managed to do and I kind of congratulate myself - lol!

Dealing with information is one of the hardest things I am trying to re-learn.

Perhaps we can share strategies?



At the moment my strategy is to pass the person on the other end of the phone to my husband if he is there or get him to phone up to see if I have got things right. But that is the coward's way out. I don't know what the answer is. If I am speaking to someone I ask them to slow down and repeat what they have said, but not if it's too complicated like when the electrician tried to explain to me what he was doing!!! I think my brain does the same as yours and tries to work things out. Probably does work but what I would love to do is to be able to switch off in between.


Hi Panda - handing the phone to your husband - is not the coward's way out - I always did this initially. Now I am coping better I have a go myself. But on a bad day I will often ask him to make the call.



I also write everything down. I WILL forget important details. I leave myself notes. Before making an important phone call I write down all important info. Better yet if possible communicate through email so you can clearly form a complete thought, read it over. & when they respond you have a record you can look up if you forget what they said. When I do something I deliberately think or say it to myself such as "I locked the basement door" as I turn it. I find sometimes I'm sharp as a tac & other times I can't form a clear thought. Many of us call it brain fog, I find this to be the best explanation.


Agree with you about emails and I do try and do this when I can but it's not always possible. I need to start writing down what I want to say before I get on the phone.

Have no trouble talking myself through things, but have had some strange looks when I am out and about, like when I tell the car that I have locked it and reminded it where it is parked!


I do that - tell myself I've just done something. Like 'I have taken my 3 steroid tablets this morning, Wednesday.'

I also find that any old stupid word association will help me remember to do/get something. Or just initials like MSE - milk, shoes, eggs. Even better if the initials spell a word. But how come I can remember the initials/acronym? Maybe just enforced intense concentration, as opposed to absent-minded foggginess?

Pain, innit?

I think I need more anticoagulation but am trying to hold out for Xarelto/Pradaxa rather than either warfarin or clexane. Might try nattokinase and see if that helps.


word association doesn't work for me unfortunately, but talking to myself definitely helps.


I sympathize with your frustration.

Warning! Personal commercial endorsement ahead! My smart phone has made my life so much easier, AFTER I managed to become familiar with the software. Having my " notes" and" calendar" with me at all times for quick access has resulted in much fewer omissions and repeats in my life!, I knitted and croched a pouch for the phone which I wear around my shoulder. I get compliments on my knit work several times a week. No, my skills are not that good, and it's just a simple stocking stitch, but it is novel. I kep meaning to bring different colors of yarn and my needles to my recliner so I can knit another one in a different color, ( to coordinate with wardrobe) while I'm watching TV, but I keep forgetting.

So let me add a line in my "today to dos list:". Bring yarn and needles upstairs. There.

But remember, some businesses, such as nearly all auto insurers, drive even non autoimmune people crazy!


Car insurance company nearly drove me to think I am nuts, but it is them and not me! Incompetence personified.

Unfortunately I don't have a smartphone but my ipad is great for round the house if I remember to add reminders onto it!!


I dont know about anyone else but its the knock to your self confidence when things happen that really gets me and every time it happens it takes me longer to get over it.

I recently decided to go to the wholefood store in kensington. I planned what I was going to do, found out where I could park and thought I had worked things out.

Everything went well until it was time to go home. I got back to my car having paid for the carpark with the validated ticket that Wholefoods supply if you spend so much in their store. However when I got to the barrier to get out and put in the ticket instead of the barrier going up it told me I had to pay more money. It seems that because I had taken longer than the pre-alloted time to get back to my car, load up my wheelchair and drive to the barrier it had gone over time. I had not thought to ask about that.

I pressed the buzzer and spoke to the attendant explaining this but he would not believe me and said that the ticket had not validated properly so was sending an attendant, I told him again this was not the case. He then said the attendant was going to take 15 minutes to get there and by that time there was a queue of cars behind me. I told him that but he told me I had to back up and let them go. This was impossible as the barrier is situated at the bottom of a steep curved slope and the escape bay was full of builders materials as the car park was having repairs done.

By this time people were hooting and a workman had come over to talk to the attendant via the barrier intercom. He tried to tell them the situation but he was having none of it. The drivers behind me at that point were swearing at me as well as hooting their horns but the barrier remained firmly down. Then the attendant turned up but before I could open my mouth about six people jumped out of their cars and ran over to him and started shouting and searing at him. He walked off throwing my ticket back at me. At this point I was in tears and still could go nowhere. The workman tried to help me reverse my car but I could not see where I was going to go. Then the attendant came back and the hooting started again, I could hardly hear myself speak but I blurted out about the fact I had taken too long to load my wheelchair and he just said "oh! Im sorry" and raised the barrier! As I drove past the barrier and the other workman that were standing watching this charade one of them lent forward through my open window and said in a very gruff workman cockney accent "Dont cry love it wasnt your fault"! And with that I sobbed right up to the traffic lights, pulled over and called my other half to come and drive me home. I have not had the confidence to drive myself anywhere since!

I still have not written the letter of complaint to the car park company - but this has just reminded me that I must!


You deserve a gold medal for driving in London! My husband will but not me. I have never understood why normally mild- mannered people have a personality change when they get behind the wheel of a car and stick their hands on the horn and swear with accompanying gestures when there is clearly a reason as to why the traffic isn't moving. I have often been tempted to get out and ask whether they wish me to try and drive over the car in front. Am secretly hoping that the attendant put the barrier down so they had to wait even longer!

What a ridiculous situation with the car park though - don't they have other disabled people or parents with children and pushchairs?? Good luck with


I do and say all manner of daft things. I have had this disease for so long now I've stopped worrying about the foul ups. I studied psychology and I know that my brain has been damaged, whether by multiple TIAs and a stroke, or by Hughes . I do get annoyed with people (medics) who tell me it is part of aging - though it has got worse over the years. At one time I held a very responsible job in the emergency services and was the person who had to make correct decisions quickly after assessing complex facts. Years later I drove round and around my old town wondering whether to drive to London, to get a coach, or to catch a train, I just couldn't decide which was easiest. I often leave the house and, after driving past a turn, say to my dear wife, shouldn't I have gone off there?

I have a somewhat forced interest in local politics- meaning I try and do something about corrupt politicians, and once I tried to make a speech at a public meeting and my mind went blank and I was mocked by someone who should have known better. I made it a rule never to speak in a public setting again (though I broke my rule a week ago when asked on holiday to respond on behalf of the British to the commemoration of a certain wartime event abroad- at least they were a friendly audience and few spoke English!).

It's all a bit of a pain, but my GP understands why I come with notes about what we need to discuss, as do others, and family close friends understand why my mind goes blank. I keep telling people to remind me if I have promised to do something for them. Notes are good, if I can find them.

On the positive side, if I ever get sued for anything I've said about someone, I reckon I have a defence. And, in 40 years, I have only forgotten two appointments!

Accepting some consequences of Hughes can be hard- but a great relief when you finally do.


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