Hi, I have been caring for my partner since 2019, when he was eventually diagnosed 6 months afterwards with a TIA after it happened, so this was in lock down. He is fine physically and mobility wise but he has very poor memory for things that happen in the current or recent, but he can remember things from years ago. He struggles with day to day things, I have to do paperwork etc for him, he would struggle to make a meal, he struggles to use his mobile and also his cognitive thinking isn’t right at all. He struggles to concentrate on a tv programme that has a storyline. He gets very confused if we don’t do things on a daily basis, in a set routine, his symptoms get a lot worse if he is tired. He hasn’t had any sort of rehab because of covid and we have had no help or medical support whatsoever and I am really struggling now, as I feel like I’ve lost the partner I fell in love with. I don’t know if it is turning into dementia or its the stroke and is there anything that we can do to help his symptoms? He has a blood vessel that is 100% blocked at the consultant said they can’t operate, but if it was 99% they would have been able too. Thanks and sorry for rambling, we are at our wits end x
I’m so sorry that this has happened to you. Could you get a referral to the memory clinic to assess his cognitive functioning? I find everything just that little bit harder work than before and am definitely worse when tired so it may be normal ageing but someone who is specifically assessing his memory might have useful ideas
Well we have eventually got referred to a rehab clinic at the end of this month, after we saw a Neurologist and he got him to do a variety of things, like draw a clock face with the numbers etc and it was all over the place, as were the other tasks that he did. He asked me if he was like this before the stroke and I said no not at all he was a skilled electrician. I’m just hoping this rehab can work miracles!
@Adelec i had many cognitive issues post stroke. Some of the things you describe sound very familiar. I worked with an occupational therapist on mine & things have jmproved but not back to pre stroke levels. See if you can get an OT referral for him.
Other than that just keep getting him to practice things. Repeat, repeat & repeat again.
Best of luck.
This is something that I have struggled with since mutiple TIAs. I describe it as having problems wth my short term memory in tandem with poor concentration and coordination. Making a meal can be challenging in terms of keeping track of what I have done and what still needs to be done. Typing something like this is also challenging in terms of keeping track of what I want to say and getting it to come out on screen like I see it in the thinking part of my brain.
Yes, tiredness does make it worse.
One thing I am considering is asking my GP if I would be able to get some Occupational Therapy input.
I suggest your partner didnt have a TIA if the symptoms are permanent or getting worse because "T"IA is temporary.
you might like to change the vocabulary used by the medical profession to refer to it as a strokte and then they might be more receptive and active of needs .
I don’t follow a plot on TV or recognise the faces at the beginning in the middle or at the end so that’s definitely something that happens to people. mine’s not getting worse though - at least I don’t think so.
I did see a neurosychologist who ran lots of tests but all that did was put a name to some of the symptoms. I’ve heard suggestions that doing mental exercises is worthwhile
Dear all, sorry to hear that you are facing challenges with memory and daily tasks after stroke. There are two, things- first is inforamtion processing and after that comes memory. If it is first one, strategies can help to make memory more effective, I have been doing this for past 7 years and I have develpoed a simple model. A neuroloist would provide a diagnosis but they would not treat the condition, hence, as a specialised Stroke Occupational therapist I am glad to be able to say that there is always hope. One, of client I met after 5 years reported that his memory is improving (he was only 38 at time of the stroke). If anyone has suggested that try strategies without understanding actually what is the issue, then strategies are unlikely to work.
Unfortunately, this is a very poorly understood area.
Please let me know if you would need more information.
Kusal Stroke Occupational therapist
Hi i care for my husband following his stroke (bleed) in 2020. He has cognitve impairment, short term memory problems and aphasia. He has the same problems as your husband such as processing information etc. He had an MRI last December and it was confirmed he has Cerebral Amyloid Angiopathy, which cause micro bleeds in the brain. I dont know much about this condition but the neurologist said it was different to the Amyloid that causes dementia.
He has private Speech and Language therapy through the Arni Institute which has helped.
It is really difficult navigating stroke recovery and knowing if symptoms are normal or unusual, knowing when to seek advice or not, worrying about things that maybe you dont need to worry about. Ive just joined this forum so hoping someone knows a bit more than me lol!
Welcome to the community.
You’re definitely right that it’s hard to know when something’s normal or not, when to seek help or not.
generally this forum is able to share experience of most of the challenges that face us stroke warriors - survivors and carers -
Best wishes to you and your husband
@Lav2 just popping by to say hi & welcome to the forum. I hope you find it a helpful & supportive place to be.
likewise. Normal??? Every stroke seems to have different effects and impacts. At least here we can get it our of our system as it were to people who will likely understand us better than those without any experience of stroke and its effects. Thanks. My husband has a lot of Lav’s husband’s symptoms too. Short term memory loss is not as obvious, but I have wondered at times. Right now, I just wish he would try to stand for more than 10 seconds so he maintains the ability to get on the molift and onto the commode with my help; otherwise, it will be a hoist and that possibility doesn’t seem to go home to him at all to motivate him to practise standing for a few seconds longer and longer…
@Lav2 just popping by to say hello. Ask as many questions as you like and we’ll share our experiences with you and offer support as best we can.
It can be difficult being a carer, remember to look after yourself too, best wishes
Yes @Mahoney hits the nail on the head; as a carer you’ve got to look after yourself because you’re the pivot point around which everything functions.
if you haven’t already find the support networks available for carers.
I’m the cared for one and I have short-term memory issues and other changes (mostly deficits I think but not exclusively) compared to my pre-stroke self - physical and mental and, I dare say more difficult to assess from within, emotional as well
I’m not too debilitated by lack of oomph to do something but I definitely struggle with a gap between intent and execution. It irks me greatly but that doesn’t lead to stuff actually getting done. I have full cognitive realisation of the rewards for the effort and the desirability of the reward but still there is something like a ghost I cannot see or touch or crystallise or explain or beat (yet). I do know that for me I have to resolve this one internally and extrinsic forces are detrimental to the process but my intrinsic are still deficient at this stage. I don’t know how to ask for help I do know that un requested assistance is counterproductive.
Of course I have no idea about the similarities of your husbands’ circumstances they may match mine but they may be entirely dissimilar for many many reasons causes .
I just put it out there because it helped me putting the words down and picking up the words might help you?
2 cents worth ciao Simon
Thank you all for your replies, its nice to know that we’re not on our own and yes it sounds like there is so many different lasting effects. I will do some research on some of the things that have been discussed.
The trouble with stroke as a word is it is as meaningful as “transport”. Stroke describes death of tissue because of lack of oxygen. that tissue can be in the brain or any other organ can be caused by a dissection hemorrhage or clot blockage. Transport could be a joyride on a camel or a piloting a jet on a freight run. both stroke and transport are descriptive of enormous variety .
That’s not even the end of it.
the brain tissue is damaged by a stroke. different regions of tissue support different needs or purposes. The ‘operation of a person’ depends on a number of brain networks that operate by passing messages around between a large number of regions both in the brain and the nervous system & muscles. There are about seven major brain networks. Understanding isn’t yet at the stage of being able to say how many minor networks there are or in which ways they interoperate which includes coactivation and deactivation, concurrent and in sequence suppression and reinforcement.
Researchers now divide the brain into voxels, like pixel in a two-dimensional picture these are volumes in a three-dimensional space. It’s possible when two people damage a collection of voxels in dissimilar places that they are important to the operation of the same network in both people for example the default mode or the salience networks or the executive network. So those two people with dissimilar injury will share some outward manifestation of the fact that they had a stroke. Since the two dissimilar locations will have different fundamental purposes those two people won’t share the symptoms that relate to other networks and that physical location within the brain.
I’m still searching for a suitable analogy. The best I’ve managed so far is if asked what engine somebody had in a car and the current state of brain research is able to say the car’s bigger and green not it’s petrol diesel hybrid or electric. And actually our interests are will it stop when I get to the traffic lights and they’re red .
The operation of systems with a number of components can either be complicated like a clock or complex like the wheeling flight of a flock of starlings. Or simple like turn on a tap get water turn off tap. Unfortunately the degree of ignorance amongst researchers, ‘professionals’ and stroke warriors propelled into a new reality post stroke means that we know a little altogether and we suffer simple complicated and complex challenges that we don’t have the ability to map to cause and effect or recovery we just have to keep experimenting and finding effective things through serendipity. Because of the large number of variables involved we don’t know whether they serendipitous discoveries are transferable elsewhere.
In relation to standing for 10 seconds that’s not actually the goal.
maybe the conversation should be " do you want somebody else wiping your bum or whatever would be visceral and emotional for him. maybe it’s best couched as "do you want to continue to be able to carry out your own toileting needs. Now you’ve said something in terms of a desired goal or a need to avoid a problem (and it’s different for different people at different times and different topics as to whether they are goal seeking or problem avoiding) You can work with him to break down what that end-state is achieved by. so being able to go to the toilet is achieved by mobility; not mobility is the aim it is comfort in one’s privacy that is the aim, the motivator from which the standing for an increasing number of seconds becomes an enabling factor. This whole topic is known as back casting but that’s a long long way from stroke recovery
I wish you well
PS excuse the non-sequiturs I voice recognition type this and it makes mistakes that I don’t catch all the time
WOW! Two very helpful posts in a row in this category. You made my brain really think. You explained in a way I was able to understand and agree with. This is something I can explain to others when need arises, thanks to your comparisons. My grandson and the pets are the only ones in my personal space that truly understand the ups and downs I have…They seem to intuit when I am able to do whatever we are doing, and when it is too hard for me. Maybe because we spend so much time together. They know sometimes I can play a little rougher or faster than others, and sometimes I just can’t play at all. Pets and children…amazing creatures.