Hi @DeAnn thank you for sharing your story and thoughts. You have done incredibly well. I can only imagine the challenges of relying on others as I only had this for a short while - not that anyone knows how long they will need anything after a stroke.
I am inclined to say you should happily make a nuisance of yourself to family and friends that is what they are there for! And if you want / can do any of those activities I am certain there are novel ways organisations can assist with aids and transport. We have to fight the good fight. To clarify my eyes are a bit worse but I can use them fine. The reading thing is probably more to do with needing better light, building up my attention span and exercising some patience! Thank heaven for Podcasts. Have you noticed your sense of self change or no?
Soooo good to hear this @rodkay! The one thing I notice about this stroke malarkey is that despite sterling research in this field there’s no lexicon or manual to describe post life. Knowing there are people who feel and experience the same as me is like gold. Here I am on the planet thinking it’s only me that is feels like a shark turned over where I’m relaxed in water haha! I agree just getting there is an achievement at the best of times when energy is depleted andthe brainis overheating.
And there is definitely something to be said about attention, patience and effort. The struggle is real but you don’t hear Doctors talk about this. I did read one book called ‘Healing the Broken Brain: 100 questions about stroke. It is written brothers where one had a stroke st 10yrs old and the other became a Doctor and dedicated his life to studying it. It was the perfect aid in those early stages. I guess I haven’t gotthere yet accepting the dodgy circuitry haha. What you describe is indeed a breath of fresh air andI appreciate you all taking the time to share.
Hi @mikey903 wouldn’t that be amazing. Funny I had a dream that I was told I’m the lucky winner of barriatric surgery lol. I woke up from that pretty fast. I have also seen the GP and I’ll monitor it thanks. Good that you are keeping busy. Everything is busy I think in the first year!
Hello @RedFraggle. I get it. I question daily who I am now.
Dismissed from work at 51. Medically retired due to incapacity. Sounds awful. Being capable was part of the way I approached just about everything.
Confidence in bits. Cognitive difficulties causing more impact than any other effect. Previous work very much involving contact with other people (NHS).
Plus side- have a pension ,and any amount of time. Have found two volunteering opportunities. Both involve contact with people. Both give a sense of purpose. One encourages me to believe I am capable- I am trusted with the till in the charity shop, something I would not have thought possible. The other (gardening) allows use of pre learnt skills which I can a) remember and b)carry out.
We are all works in progress. We all can build on small wins effecting bigger change in confidence and who knows where that will take us.
Putting myself in situations I am uncertain of- I constantly suprise myself. Not comfortable, or easy, but everyday really is a school day.
Remember that essentially you are the same person and trust yourself.
The stroke experience requires ongoing reconciliation as it is so sudden, without warning, and so changing.
Wishing you strength and the confidence we all need, Julia x
@RedFraggle I think some of me has changed but that’s not necessarily all bad. I find i’m not as patient with people on one hand but on the other I can now let things go that used to drive me mad.
A big part of piat stroke life is acceptance of the new us. Version 2 if you like.
I have returned to work and they say i’m doing well but they don’t see the affect it is having on me fatigue wise.
I guess it’s a learning curve & about finding the person we are & loving them. We are still us just a little broken maybe.
You just spoke to me…Cognitive issues are the hardest for me. They have pretty much ruled out working again, but suggest volunteering. I always have, do and will continue to volunteer, but I still worry about my reliability. Sometimes, I just cannot do anything. It is getting much better with time, but has been slow coming together. Thank you for your commentary.
I have had some major changes to my personality…much more talkative, much less reliable, kinder to myself, less patient inside my head. but don’t show it on the outside, I care about much less than I used to, sometimes impulsive, and early on mood changes constantly, from angry, to sad, to joyful, to overly grateful for everything…all over the place.
I liked myself before, and although I am a bit different now, I think it is a better me. I am no longer killing myself to do, do more, do even more… I do take time for me…to relax, to sleep, to enjoy a meal, … I am slowly changing the things I don’t care for…controlling the impulsiveness better, back to being a better listener, although I can still talk a bit much.
i hope you are coming along to where you want to be. I don’t particularly like the words accepting the new you, but I get the gist of it. I like the words molding yourself into who you want to be, how you want to be. (Call me a control freak). We still have a choice in the matter of who we are and what we do.
Thank you @DeAnn for sharing your feelings and thoughts on the topic along with everyone so far. The volunteering sounds great! I will do more I think.
You are all validating me by responding because I thought it was me going psycho and screaming silently in my head. People with other illnesses may attract a level of sympathy and support from the general public and by employers (not talking about family, services and charities who thankgod are there for us). I wonder if it’s because not enough people know about brain attacks?
I honestly feel like no one (medically) talks about this adjustment. It is HUGE. We are walking around inside our heads and bodies with this elephant in the room to other people called ‘acquired brain injury’. I refuse to minimise it as I’m expected to, just because it doesn’t look like an RTC, I’m not in a coma or staring into space and dribbling as a full time hobby. To me the emotional and psychological ‘injury’ isn’t unpacked enough as worthy of investigation, research and funding. I’m guessing it isn’t a PhD topic either. I wish someone would pick this up!
It is almost as if life after a stroke (for those impacted at least) are to some extent expected to figure it out and get on with it. I know that I find it difficult to examine myself and put words and feelings to my different abilities and much of mine are so hidden that I am forced to announce them to people which feels great - NOT!!!
A simple example of this was in a theatre with someone who asked me to hold something and voiced their impatience. I was already holding my small bag, purse and a credit card. The sheer magnitude of the cognitive assault course in front of me and finger dexterity gymnastics in the next 60 seconds in my weak arm and hand was a feat many of you will understand but was not so obvious to the relative. Why should it be? The zip, grip, weight and organisation all at once was a decathlon of events for me. I felt crushed, an idiot and angry all at once. But what could I do. I didn’t want to explain or get into it. I took a deep breath, put my calm face on and blocked it out. So then I came off as aloof and dismissive when really I was hurt and reminded of my Stroke again, as I am 24/7.
I know that example is very minor but I feel the hazmat suit has to be worn at all times outside my front door and that has changed me as a person and all my interactions. As it was said before, the world is ‘out there’ and I am ‘in here’. It is how it is…for now. Hopefully in time there will be an assimilation between my two worlds . Sorry that was a novel
Maybe
But it was an eloquent narrative of what many experience in there new normal emotional state
It is a PhD topic, there are quite a lot of papers on Google Scholar and under the title of emotionalism there’s quite a lot of stuff on the slightly more populist websites including the stroke association. But it isn’t recognised by people in general or even med staff or staff like those of the stroke associations et Al
It may improve over time. Fingers crossed. Maybe you could give your relative link to who some of the descriptions of emotionalism - and I absolutely understand The cognitive effort to hold something in affected hand especially if I then got to walk with something in the right hand - maybe you can explain to them?
Thanks! Not sure if ‘emotionalism’ quite captures the essence of personality, a subset sure. I’ll have a look though cheers for that. It might be a theory but I’m not seeing it translated into practice. One neuro psychologist charged £100ph just to listen to me talk! I think she drew a picture one time as well . I cut that out sharpish.
Took me 2½yrs to get out of my head and back in the room, but I did get there! The fog lifted first, sometime in the first year post stroke for me.
But until I was “back in the room” my personality, emotions/moods were all stuck in neutral, numb, frozen, stuck inside my head. I soon learnt to fake interest, laughter, annoyance and took my cues from those around me. There have been times I’ve missed though.
I did explain what was going on to my family and close friends, I didn’t want to risk upsetting or offending anyone if I missed a cue. But I explained all this in writing in an email to everyone because I also have mild aphasia. To speak, my mind is always scrambling and scratting around to find words that will actually come out of my mouth and that gets exhausting very quickly. So I could write it all down far more clearly than I could ever speak it.
Yes I could get frustrated or annoyed with things, in the same way that everyone with any brand new disabilities do. That’s nothing new or unique to stroke survivors so not one of the side effects of strokes. That’s just human nature.
You have been through a major life or death trauma. That changes you!
You’re going through the menopause and that is changing you too.
Stroke brain shutting down now, that’s always been my favourite phrase to use and even taken advantage of
I nearly cried in relief when I first got on here and found everyone could relate. We are not alone
So if you have any other questions you’ve been pondering about, no matter how trivial, silly, whacky sounding they may be, ask away because there’s nearly always going someone on here who can relate. The only stupid question in the one you never asked.
Your example was not minor. It might be considered minor if it only happened once, maybe, but I would be offended even if I had not had stroke. Having them makes it that much harder, then having to explain that your brain has not yet recovered or relearned yet to multi task and do it quickly. The relative was plain rude, no matter who they would say that to, and under any circumstances, but knowing yours, it was also mean. Now I am judging. Sorry. I also know these ‘minor’ incidents happen often enough to make them major in the repetitions. And now I am not judging, because some of those repeat offenses are upon ourselves. I can’t count the number of times I have called myself an idiot or a moron over my slowness, not being able to think of the right word, forgetting things, dropping things, tripping over things… Try to be kind to yourself. You are awesome!
That brought tears to my eyes, it was so beautiful. It is so much better once one realizes we can be even better than before. In some of the same ways, but also in new and different ways.
Hi @RedFraggle
Where are you based? Or is your relative based here ?
Yes emotionality isn’t a term that covers in accuracy or completeness. When I went into hospital my wife Lea @BakersBunny recorded a video diary of her fear and desolation - I had my stroke during covid lockdown so she was very limited in visiting. I’m not seen it other than the first one but the message was will I get back the same person as left me when I delivered them to a&e
In my case her later comment are "same old belligerent bugger” and the family nickname of bogg as in big old grumpy git continues to be uttered - although I think both are completely unjustified
It’s good if you can remove from your circles those people who are drains not radiators. Some people add to your lives and some people detract and when you’re post stroke with reduced spoons carrying the drains is something you pay a much higher price for - those who are best off conclude too higher price
I think the personality bit is one of the areas beyond vocabulary so therefore understanding of what happens to a stroked head. Current research talks about voxels - like pixels in a picture but they are three-dimensional so volume elements. Medical staff talk about damage to an area of the brain. Brain mapping realises and models that voxels are part of many brain networks. So if you have damage to one physical area You probably interrupt several or even many networks
All of the processes such as decision making -whether conscious or subconscious involve emotional responses - I believe the primary mechanisms heavily involve the amygdala but the brain networks will be many and varied.
This stuff has not moved from observing what is going on through to hypothesis and theory about how to beneficially affect and certainly not into frontline clinical practise.
For example I think the role of the physiotherapist is 90% motivation 10% muscular skeletal. But that’s not how they are trained because their trainers were professionals when none of this was understood. Likewise this forum gives the capability to establish a community but it is run by IT people not sociologists and even if they were sociologists the probability that they knew the effects of stroke and were sensitive to the translation of society into a digital context is low.
There are signs everywhere that awareness is growing. For example California has recently introduced into law statutory reporting of digital community moderation. That’s a route that will raise awareness but it’s likely a minority group like acquired brain injury, traumatic brain injury, even congenital brain defects will always lag - but it’s coming. Although that is probably cold comfort for you in your need now
@SimonInEdinburgh Thanks for your insight. I am pretty lucky all things considered in my journey so far. With the internet and social media I think Stroke is gaining awareness where younger people and celebrities talk about it without fear or shame. That helps to normalise the discourse to an extent.
Although researchers may or may not be able to define our experience and root it back to a neural network, there are a lot of common themes among survivors that would be so powerful to capture and share. I studied social sciences and god knows why I’m thinking about it now. I just thought ‘Bio-Social’ (I made that up in my head but it turns out is it a real theory ha ha!) - the interaction between the biological differences in brain/mind/body and the impact on social context, relationships and development. Perhaps an extension of it is ripe for exploration with Stroke. I’m going to have a look.
Hi @RedFraggle
In that case have a read of this piece that I wrote on LinkedIn a couple years ago
The topic of sociology of digital community is something that I’m discussing with a number of different folk in the rehab and beginning to be in the academic community as well - demonstration of an understanding as capacity here too
Ciao
Simon
I’m in contact with a few folk that you might be interested in .
One is investigating BCI that is brain computer interface for upper limb rehab .
Another company is developing a pneumatic glove as their first product and have the vision of reducing the impact of disability
Another is using apps to provide support of cognitive processes like remembering your shopping list or doing your exercises and using GPS to identify when you’re near the shop to tell you that you have actually got a shopping list - I spoke to them this morning
. Sorry that was a novel 
. I cut that out sharpish.
