Outlook after stroke

No, this post is not about what email client you prefer after stroke but, instead, a wee opportunity to think about positive ways of being post stroke. I consider myself a layman of life with no particular genius for living, however, here are a few of my life changing perspectives post stroke in no particular order.

Tai chi - prior to stroke, I would never have dreamed of doing tai chi. I considered it something a bit poncey or something retired people did in urban parks. After stroke, I embraced this gentle movement, and found that it provided me with a grounding sense of peace as I flowed with each movement. I began to see how it mirrors the natural world around me and reminds me that I am a part of this life force.

Meditation - I practice Zen breathing , and what a benefit it is. Not only has it allowed me to recover from debilitating dyspnoea, but it also gives me a tool to reduce anxiety, slow the heart rate down, and focus. Prior to stroke, this kind of thing seemed pointless. I was convinced that breathing was an automatic bodily function that needed no extra cultivation apart from the occasional sigh, reflecting the weight of the world. Now, I feel that my lungs are a way for me to change gears. Controlled breathing allows me the opportunity to centre myself and balance my thoughts when everything starts to spin out of control.

Electronic games - I loved computer games as a child, indeed, I would sometimes truant from school by feigning illness, and then when my father left for work, I would switch on the computer and play computer games all day until he returned. At some point in my life, I rejected this past-time as time wasting, and joined the masses in doing other things that were deemed more productive but actually really aren’t. After stroke, I returned to this hobby and have now clocked over forty games. It has been an integral part of my recovery, allowing me time to focus on my motor skills in a pleasurable fashion with interesting storylines, absorbing artwork, and becalming music. I appreciate the work that has gone into creating an immersive space to entertain, and interact with. Financially, it also works out cheaper than renting a film and supplies a much longer attention investment.

Time - Before stroke time was of the essence. What essence, I now cannot say. It may be appropriate to say that prior to stroke, my time was other peoples. Post stroke, my time is my own. Ironically, post stroke I have inaugurated a habit of collecting watches and clocks. Before stroke, I never wore a wristwatch, I now have three. This isn’t for anyone else’s benefit besides my own control over my own time. I no longer race to do things, this partly materialises from being unable to but now has extended to things that I can do faster if warranted. What was it Douglas Adams remarked? ‘I love deadlines. I love the whooshing noise they make as they go by.’ I’m sure Samuel Johnson would agree, and I have to admit, I concur. I take a lot more time with things, but I also observe more, I spend time now on smaller things. I don’t flash past things like I used to. I will stop, listen, look, feel, smell, and think. I didn’t do this very often pre-stroke.

Etiquette - Before stroke, I was never expressly mature. I enjoyed hanging out with children and indulging in that world of endless and pliable imagination, but I separated the two worlds. The child’s world and the adult’s world. Well, post stroke that division has gone, and if it pleases me to challenge an adult to a duel with a wooden sword, by gosh I just will. What was it Aldous Huxely said? ‘We are all geniuses up to the age of ten.’ Allowing my actual personality permission to run free has given me a coping mechanism for the pain of symptoms. I’ve spent too long trying to be an adult and fit into the mould, and it hasn’t rewarded me with any satisfaction, but blowing a raspberry when someone informs me that I haven’t stacked the dishwasher properly brings me endless joy.

Dogs - As a cat person, and the son of a cat lord (my father having had thirteen cats and a keeper of their cremated remains in urns about the house), for years I refused point blank in accepting a dog into my life. It all came down to one issue I had with humankind’s relation to dogs, and that was the power dynamic. I love animals but I have a problem with subservience, and saw our canine’s relation to humankind as emblematic of this. My tune has now radically changed, as my dog is wonderfully disobedient at times, but more importantly benefits from the love and care I can provide, and in exchange, returns this with her own variant. Also, being able to correspond with such a companion while I undertake my daily activities has proved to be immensely soothing and a welcomed distraction to my symptoms.

Music - I rarely listened to music prior to stroke. I worked in silence. I wrote in silence. I found it irksome if people played music while I was doing something, and preferred conversation than singing along to a tune. All that changed after stroke. It is interesting that I revisited my early childhood interests in music, which was primarily ancient music, and followed a sort of timeline, creating playlists for different occasions. I went from ancient or early music to classical, to jazz and 80’s pop, and then discovered drone and drift which is a completely new genre I had never explored in my youth. Now, if someone puts on a tune in my presence, I want to sing along with it. I will join in singing if someone else is. Music saved my recovery from being too cerebral. I have to say that it has become one of the most essential rehabilitation tools I have used, and relates a lot to the concept of audio biofeedback. Although, I still don’t understand why some people garden with music playing, or the radio on, when nature provides us with a glorious symphony of its own.

So, what transformations have other stroke survivors experienced? Feel free to scribble something down here if you fancy.

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@Rups a fascinating insight into post stroke life. Thank you for sharing.

Not written so eloquently but for me not stressing the small things has been a positive change. I still get stressed but in a different way. I let things go that used to wind me up and in turn there is less frustration at home.

I’ve learnt to live life at a much slower pace. Mainly as I have no choice but also because I quite like it. Pre stroke I was permanently on the go……work, parish council, volunteering, running, etc etc I have new, much more sedentary hobbies now :grin:.

I no longer take things for granted. Living with a disability makes you realise just how much we all take stuff for granted.

I’ve still to rediscover my love of music but hope it returns soon.

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@Rups Good stuff:
Thai Chi reminds me of trying to learn the foxtrot or some other ballroom dance I tried as a youngster.
Just can’t memorize the steps. So I put music on and just dance and do my own thing.
Television is important to me ( I did a post on it). Not only binge watching various series, but also documentaries and History shows. Do you guys in the UK get " Alone" ? Very good.
Something akin to meditation is prayer. I need a higher power to talk things out and then take time to “listen”.
Yes, I am MAD for dogs. Just love them. My own pup seems to know when I am down and comes over to me for a cuddle or pet.
Nature: My favorite time of year is the fall; the color of leaves and the rustling sounds in the trees is so soothing. Walking or just sitting under the trees in the fall is wonderful.
Being with good friends and family. Don’t isolate. Early on I just wanted to be alone and curl up in the fetal position. That was no help. Be with people…good medicine.
Creative hobbies: painting, drawing, crafts, coloring books, collage, playing an instrument. These help with fine motor skills.
EXERCISE…enough said. lol

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@Rups very interesting read.

For me it’s taking time for me. Pre stroke I was always working or looking after/looking out for someone, husband, children (even though they are adults), grandchildren, now I take the time to put my own needs up there at the top of the list.

I’m still learning about what I enjoy, I’ve taken up drawing, though I’m not the best at it, but I enjoy it.

Walking and being outside listening to nature, the wind in the trees, bird song, the sound of water, all very calming for the mind.

Photography, though again, they are no work of arts, simple snapshots of moments in time whilst out on a walk.

Pre stroke I loved yoga, but I can’t always balance well so many poses are out of my range now, so the joy is not the same as it was, so it just doesn’t do it for me now.

I’d like to have a dog but I’m unsure if it would be a step too far.

Today I tried swimming, that was pleasant, whilst being a little exhausting. I’ll try that again, so swimming may be added to my repertoire.

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This is perfect! Thank you for starting this and sharing so many lovely thoughts.

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Thanks for this @Rups. Thanks for getting me to look at the positives.
For me, having time, no longer working is a big one. Filling that time with creative things, gardening, jogging and walking, and I am trying to relearn Spanish online currently- tricky and frustrating at times with my cognitive issues but better than not having any.
I am also honing my “I don’t care what you think” attitude. If it doesn’t harm others, then so what if my not very pretty jogging offends some people’s sensibilities. I will not hide myself away.
We recently took on a new pet rabbit from the RSPCA, that had virtually been written off. I’ve got the time, the experience, and I am very happy to say she is like a different animal ( currently nudging my ankle). She is my little success story.
Julia x

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Great post @Rups

Constructing a reply will take me some time I think. your post catalyzes the crystallization of some questions that have been running through my mind for a while.
This is Pro temp.

I recognise all of the triggers that you & the others who have posted either state or imply.

I’m not sure about the extent to which I’ve leveraged triggers potential, that’s partly tinged by a feeling that pre-stroke I did many of those things through what’s popularly called neurodiversity and post stroke I have a label that people find much more acceptable for my eccentricities

There’s another tinging element; I rather see my wife and I was a team and in some ways she’s the dominant personality - not in all ways - and the effects of my stroke on her and therefore on us and therefore on my behaviours or my pursued interests is part of the mix. Maybe something of an anchor?

There’s another tinging element; My stroke occurred the day after we’d had the conversation that said earning a living is now a grind that returns little for the effort let’s stop doing it live off the savings and pension when it kicks in. So we’d taken a major life changing decision at the point a major life changing catastrophic event occurred - It’s impossible to separate out which effects were caused by one or the other.

I spend time on this forum in substitution to other forums like LinkedIn where I was part of the global project management ‘thought leadership (?)’ Or maybe the correct term is just ‘pointless repetitive babble’. I’m glad to have set that aside. I do wonder about Lorraine’s decision to quit here and I think that it would be a sensible decision for me. then the time would be available for other things.

That’s in part balanced by a belief that stroke care (any ABI) is pretty poor and will be hugely improved by the application of digital means that encompasses rehabilitation tools integrated to community, that I have the knowledge and capability but probably not capacity or focus, to lead some worthwhile change - that doing so will actually be too much like going back to having a full-time job. Formation of purposeful community in a digital space does interest me intellectually

On the flip side the time I get back I could use in other ways - For example I have what was once a very nice wraggle edged table on the back terrace which after 25 years of weather need some serious restoration that I haven’t done this summer . I am however slowly making progress on cutting back the trees and other shrubs that have in the last decade or two rather taken over the lion share of the light. Putting a hobby shed and a vegetable garden in place are both current topics

In fact there’s lots of jobs around there garden &house that were always planned as a “when I retire and have time” and are now left unaddressed - but I often wander around and catalogue them and imagine the steps like the trip to b&q that would be necessary.

I suffer from a gap between aspiration and application of concerted effort. What happens happens very serendipitously. I’m content with that serendipity but I’d like to find a way to be more industrious

One definite change is the my previous pursuit of perfectionism in many of the things that I did has had to be taken back several notches to accept the fact that I don’t have the dexterity or the cognitive processes or the memory or… To reach those peaks - but that hasn’t reduced my aspirations universally just my realism in some aspects

Thanks for the thread- it’s themes I’ve been in my mind for a long time and putting them down in a way that I’ll be able to read back in a few days is helpful. The post stroke journey is about adjusting to changes outward flowing ripples. Those ripples bounce off the fixed boundaries in our lives and then cancel out or reinforce each other in the actions they cause .

Ciao Simon

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So many interesting replies, diolch for sharing. @Mrs5K, the theme of slowing down is a common thread for us, I think. We are coerced into doing this because of issues like fatigue but, for me, I think it is a constructive way of being. I was never a wheel horse, and after stroke, I have slotted quite well into needing to be slower but I have found that I am a lot more methodical. Much of this stems from an interesting phenomena of cerebellar brain damage, being unable to recognise patterns. My brain copes very well with individual components, but is sent into a spiral if required to see structures as a whole. This means I spend a lot more time on the nuances of each component, and that means things come together more efficiently.

@Outlander, I binged on documentaries and history programmes post stroke, still revert to a good programme on the past while having lunch. Recently watched an interesting documentary about the rise and rise of Robert Bruce, and am currently watching Everything hosted by Professor Jim Al-Khalili. My favourite time of the year seems to be Autumn too, the colours that speak to me most are brown and green, so this is a favourable time of year for my brain.

Bore da @Mahoney, I’ve been privy to your recent hobbies and I think it is lovely. Doing something for oneself, that doesn’t require any yield aside from pleasure is a splendid way to spend time. I wonder if you might have adopted these hobbies had you not had a stroke? I’ve always voiced that if I am well, then other people benefit, so putting one’s needs high on the priority list is good for everyone. I was like this before stroke, running around after others and, inevitably, fighting for my own time. I would often starve myself of time and then kick up a fuss about it down the track. That is a counterproductive way of being.

Diolch @DeAnn, as a grumpy old git, I have taught myself, post stroke, to take some time to think about affirmative things in life. @Pds showed me a good technique of replacing a negative thought with a positive one. Wallowing in something pleasurable instead of something stinky.

Bore da @JuliaH, good, I am glad you are jogging as you will. I have expressed many a time, post stroke, that if it doesn’t harm anyone or oneself, then I don’t give a damn. I went through a phase of putting tomato ketchup on everything, I think my brain (or stomach neurones) was craving sugar. On one occasion, I did so on a chicken roast dinner with gravy. It was an extended family dinner, and my action horrified the people present, in fact, concerned them enough for some to earnestly reprimand me for doing so. So, I squeezed some extra more onto my plate, knowing that this would infuriate them further, and said quite vocally, “I’ll do what I like, I’m the one eating it.” I am fond of rabbits, I have cared for two rabbits in my time, and both were dear to me. I hope yours brings you much joy.

Bore da @SimonInEdinburgh, 'pointless repetitive babble’ :laughing:, I left Twitter (Or X as it has been rebranded) for pretty much the same reason. I understand its butterfly effect but feel it is a tug-o-war with wind. The benefit of soft spaces is that one should be able to come and go, and accessibility is ubiquitous to the point where, in theory, it shouldn’t be an imposition. It always bemuses me that we make time for the ephemeral. I wouldn’t consider sitting at a table, with plate, cutlery and a napkin just to eat an apple. However, it is folk like yourself and indeed, all contributors on this platform that provide much needed comfort and support to those who find themselves here. It works a bit like an elder circle in that respect. I told my father that I feel that I have sort of officially retired. I feel like I have retired from humanity in many respects, a bit earlier than most but I can’t fathom the difference, so will continue to think in that way. Your decision to resign from the daily grind reminds me of a wonderful Python tune, The Silly Walks Song. With a little effort, I have managed to earn a few bob selling my walking sticks, and children’s swords, as well as plants and other oddities. People give me their unwanted bric-a-brac and I sell it on eBay and Vinted. This is all just alternative economics. I am fairly self-sufficient, but it has taken having a stroke for me to commit to it as a way of life. Like you, the gap between aspiration and application of concerted effort is wider than before stroke, this has caused me at times, moments of despair. I am still working on that one.

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Hi,

I could decipher / decode / listen to music better ( more meaning ) after-stroke.
Give us a pointer about zen breathing ; I’d love to know more

ciao, Roland

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Shwmae @pando, that’s an interesting post stroke development Roland, and must be incredibly enjoyable as you are very musically minded. Zen breathing is really very simple, I usually breathe in from the stomach and up through the diaphragm for about three seconds before pushing out the air through slightly pursed lips. What I found useful with my condition of dyspnoea was to use Zen breathing in combination with controlled breathing, so that meant practicing it in all different positions, whether lying on my side, on my back, or sitting up. Sometimes, if I start feeling giddy while doing everyday things, I stop, close my eyes and centre myself with a few controlled breaths. Obviously, not if I’m halfway crossing the road, but I’m content to do it whenever or wherever I feel the need to.

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That’s a useful rundown, Rups.
I didn’t know what dyspnoea was, but I certainly suffer more from shortness of breath, a year on from my stroke. I will practise it a bit… good thinking about the different positions… mind you, I get cramp (on my good side) much more than I ever used to.

Yes, my arm has good mobility, and starting to get much stronger. My fingers can’t quite feel the edge of the record… mind you, I’m getting close to feeling it… but I’m successfully putting on and taking off records without damage. Hooray.

speak soon, ciao, Roland

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Are you a vinyl sounds better person ?
I’m guessing that you have to have a sufficiently tuned ear to be able to resolve the distinction.

And then I guess the sort of turntable stylist amplifier speakers etc ad nauseam will become key components in the audio chain, oxygen free silver cables etc?

When you’re equal to all of that and so can resolve a distinction can you verbalize what the improvement is, for us who don’t have a clue

Ciao Simon

Rups,

I know a lot of (classical) music, and have listened, taught, played it all my life. But after I had a stroke I gained even more emotional insight and an immediate understanding of what the music is saying ; its meaning. This ability to “see” into the mind of the composer / performers was definitely a step closer to the truth. The muddles and complications were gone / reduced, and the emotional message became clearer… like a layer of blur was removed or a filter was removed. Definitely as a result of my stroke.

ciao, R

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Hi Simon,

Sorry about the long reply but you asked ! I’ll happily listen to vinyl or digital, ( particularly Hires ) but yes, vinyl has a warmth and body of tone that connects me more fully to the music. Violin, Cello, Voice, Organ all come across with something extra.

I have 2 Hifi systems, each costing like a good condition second hand car ; my cables and interconnects each cost £100-200+. That said, I’m not obsessed with the ultimate hifi, because it will never reproduce the real thing. As long as the sound is accessible and attractive, I’m happy.

The point is to have a sound which has that warmth and body of sound, so you can just concentrate on the music. Even better, to be able to focus on the meaning , the emotional content and be whisked away to another world. If you listen to a shrill kitchen radio, you can still focus on the music ( I know ppl who love music & are content this way ), but you will not feel the vibes, the bass, the body of tone. When an amplifier does a good job, the sound is unforced… like a car with a big engine vs. an old bangar… each one will go at 50mph… but in the passenger seat one will feel luxurious, one will feel rough.

The sound is not the music itself. Music is how you shape the sound. The sound is the presentation and packaging… a bit like the texture of the paint ; what medium you use. I, however, love an inviting sound ; one which is unforced, natural, warm, dynamic, expressive… one that I am tempted to hear over and over.

Of course many ingredients remain ; the composition, the musicians, the acoustics of the hall, the instruments played, the quality of the intruments, the recording microphones used…and more and more…the list of variables in a recording is huge ; the more things they got right, the better the chances of “getting it across”.

Music can express emotions with much more accuracy than words.
That’s how it all feels to me ; I hope I got some of it it across,
ciao, Roland

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No need for a apologies over a long post; in fact Id say that was a short post!

Words are labels for concepts and relationships between them. When one person uses words to express a concept that the other doesn’t share such as the adjectives warm and inviting for sound the degree of communication is necessarily reduced by the dropout.

I do know how a mighty organ reverberates around a gothic cathedral though. I think some of your description referred to experiencing the sound or music - isn’t one word the description of a subtype of the other? - via other senses and just the ears

I guess your Wi-Fi setup is in the top 5% so it may not be the 99.9th percentile but it’s getting there.

There’s a parallel challenge which is the discussion of fine wine. If you haven’t got the senses you haven’t got the vocabulary if you haven’t got the vocabulary you haven’t got the senses if you’ve got the vocabulary you’ve got memory of nuanced taste .
There’s a notice of all difference between a £3 bottle of wine and a £15 bottle of wine how much difference there is between £20 bottle of wine and £200 wine for most people - definitely including me - is lost

Bottom line is I’m very pleased for you that there was at least one upside to your stroke :slight_smile:

Ciao
Simon

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One upside to my stroke, yes
plus there’s another one I can think of, but I don’t know what to call it. Maybe you know?
It’s when I talk to or listen to people in my after-stroke group, here in Bristol, I can see / recognize what they have been through… we have all been through hardship on a level that the average person will never know. That surely teaches us humility and an appreciation of life?

I dislike Wi-Fi but love Hi-Fi… must have been a little slip. You see I am against streaming for quality of sound.

I’m comfortable with a £20 bottle of wine, but 1 glass is plenty for me

Today is a nasty locked-glute, and sore-eye day and another problem day for me, but I assembled a cabinet for more LPs, hooray. Now my Chinese dr. will visit, and I can grumble at him.

ciao, ciao, Roland

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Morning Roland

You’re missing label for the empathy and visceral understanding might be bonding? It might be the quality that ‘crew’ has? Particularly in the military sense or one where there is a life and death dependency?

We have a shared context so we have experiences that the labels - the words - describe for us with an emotional context We can draw on to make the words more than sounds. Perhaps another description of what you get inside your group is the disconnection when you hear a medical person talking about stroke impacts and journey. they convey a subtext that shows these medical people are talking about something that they don’t know or understand in the same way. Perhaps this is a parallel to adjectives like ‘warm’ for music¿

I didn’t get the Wi-Fi Hi-Fi reference. Most of Wi-Fi these days is quite capable of transferring a bit stream at speeds that will transfer all of the information in even the most high-res or even analogue/ lossless EG flac stream.

This glute thing seems very long present and very debilitating/ annoying. I know you’ve posted about it many times.

Can you specify the conditions to bring it on? Can you describe similar conditions that if present avoid it? What about the conditions that are required for it to go away, to ease or tighten?
There are neurones outside of the brain and I’m guessing that you’re locked glute is describing a situation where the muscle in your glute has contracted and stays contracted?

It might be a new thread rather than taking this one off a tangent

Chow Simon

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I enjoy playing vinyl as well. Unfortunately, my player is without an amplifier at the moment, over the past few years, I have been scouring eBay for a decent vintage amplifier but it’s almost impossible to pick up a bargain these days. As an example, if I see a Rogers Ravensbourne amplifier, it will be priced well into the hundreds, and have something akin to twenty bids on it. Truly frustrating. I also listen to stuff on reel-to-reel, I have several reel-to-reel players, my joy is an Akai tower that has an immensely satisfying sound. I didn’t listen to much music, but have a lot of spoken word and comedy material (and concept albums!). My greatest bugbear about streaming is that it has virtually (no pun intended) done away with the concept album.

If you get the chance, I would recommend listening to or reading The Vinyl Detective series by Andrew Cartmel, not only is the author a lovely chap personally but his books are very entertaining if you have an appreciation for vinyl or even shellack for that matter.

The dyspnoea was extremely debilitating for me, I would huff and puff around, even when doing little physically. I used to have to take a cleansing breath each time I turned around in bed. I think I can, almost, conclusively say that it started to diminish when I began practicing Zen breathing throughout the day. It took about six months to ease off, and now only reappears if I am very fatigued.

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I’ll look into him, thx for the tip, and good luck in finding a vintage amp.
I can imagine how dyspnoea could easily creep up on me…I’m sure it’s happening, as I can no longer run and jump, play frisbee etc. Zen breathing will be good for me. Well done for fending it off ; you have a acquired valuable skill, no doubt

Thanks for you input, ciao, ciao, Roland

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Having been disabled since age 10 and now 74 stroke earlier this year was just another disability to cope with. Not requiring a power wheelchair that my other disabilities do stroke was something new and freighting for me. I was lucky I had to TIA’s within in 5 days and with minor left over issues unlike my sibling 18 months younger who 2 weeks before I had my first event lost the use of the left side, speech and is still fed by tube so I really think how blessed I am. I still collect model soldiers from pre WW2 time, mess with my guitars (Fender and Gibson’s) I was worried that the left over issues of the left hand thumb and the index finger would cause me issues to play have just made it a little harder. My wife still endures my attempts to get a decent sound from these wonderful instruments.

I have a reasonable interest in music but it leans to country since one day back in the 1960’s visiting my parents with my first wife no longer with use I was ignoring the conversation and listened to the BBC and the Grey Old Whistle Test and found Johnny Cash the rest is as they say is history and I can add many other greats like Merle Haggard, Kris Kristofferson, Toby Keith and many others across various spectrums like Bruce Springsteen and Lennard Cohen and the great Hallelujah. Down to Pulp Fiction and Bob Marley. But they all came before the 2 Tia’s in March 2023. I sort of had my life stable or I thought I had. My disability through up many challenges and I took them on and my early life was in travel and aviation then my second life in my 40’s I went to university and graduated with a law degree. Now if I would say I was to have a stoke it would have been then and when I went in to practice as a criminal lawyer. But no it waited until I was well in to retirement. I m still trying - 5 months on so many un answered questions. The only one I seem to being answered is that of fatigue. I have never fallen to sleep so much and feel so worn out. OK perhaps my age, but I was so active even with the disabilities I loss a limb through my hip in stages over the years but that did not stop me getting a private pilots licence and traveling the world Uk to Australia - USA to South America and the Panama canal is still ranked up very high in the places to go to. From Australia to Japan and stops on the way. But why did it happen at 74 when my life was less hectic? I now try and cut the stress out and enjoy my dog who is so important to me. Bear is a 94KG Saint Bernard boy Long haired and can counter surf. So lucky to have him and my wife for 40 years plus who has to do most of the care he needs and takes care of me even more so since I had the strokes. But why? what caused them? They have totally messed with my life and I never know what one day will bring or not. I try to live it on my terms but what are those terms? I have no real idea. I try and take something from others that post on various sites to see if there is a magic want.

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