Four year anniversary post stroke

Last month, September, in 2020, I got slightly distracted, from my accustomed way of life, by a doctor entering a hospital room to inform me that I had six TIAs and a stroke. It was a multi-focal, bilateral cerebellar stroke. Two hemispheres of my cerebellum got damaged, more damage on the left, but some on the right. At that point, I couldn’t walk nor understand my relation to physical space but I was still breathing and coherent, so I guess there was nothing else for it but to unravel myself from this bewildering state.

Everyday, these days, I awake and I say to myself, 'Right, I have twenty-four hours," and that is the sum of my life until the next twenty-four hours. The symptoms are milder but not any easier. The idea of kicking back and relaxing is a luxury to me. I have moments of reprieve, and that’s what I seek. Delicious moments where I feel as if I hadn’t any troubles at all. These occur at odd times, mainly in the morning when my brain hasn’t properly started communicating with my central nervous system. Other times, it’s after a few beers or when completely immersed in company. It’s a strange and uncomfortable existence, peppered with thoughts of further complications or a plateau of a dysfunctional last leg of my life’s journey.

When symptoms are acute, it’s a bit like how I imagine bungee jumping is, I don’t want to backtrack and let fear stop me from stepping forward, but it is still exhausting. In theory, everyday movement should be rehabilitating my symptoms, and still I’m creeping along with progress, but I suspect certain psychological obstructions may impede this process a little. The cerebellum is a complex and under-studied part of the brain, and I suspect there is little understanding of the effects of Schmahmann’s syndrome from the perspective of a stroke survivor. I imagine my cerebellum like a city, what got blitzed? There were six transient attacks, maybe striking some major infrastructure, disabling it but in that moment, putting offline other integral networks. The two strokes, left and right; the left disrupting transport facilities and observational units, and the right hitting libraries and assemblies. What a mess. What a clean up.

The ongoing complication, with it all, is that four years ago, I was a younger, fitter fellow and subsequently have aged, no doubt with deterioration associated with aging, other bodily erosion, and the weakened state of my corporeal being. Not to mention the challenge to my mental state, which has defended its sanity like the Black Knight from Monty Python and The Holy Grail, “'Tis but a scratch.” - “A scratch? Your arm’s off.” - “No, it isn’t.” - “Well, what’s that then?” - “I’ve had worse.”.

So, what are my residual symptoms? Well, residual from stroke is ongoing visual/spatial confusion. I can be walking and depth of field narrows which means I slow down but then the field of vision increases, causing me to stumble slightly. The nystagmus can be quite intense at times, so much so I can almost feel it in my eyes. I believe I have vertical and horizontal nystagmus and, as far as I know, there is no cure or rehabilitation for it. Dyspnoea is still oppressive at times, even with controlled breathing techniques to put my mind at rest that I am not slowly suffocating. Brain has its energy easily zapped by cognitive activities, particularly following information and absorbing it. Working memory can still be a little undependable but other memory functions have actually improved and exceeded functionality prior to stroke. I have a strange dichotomy between target fixation and low levels of concentration. Mind seems to be able to interpret and react very quickly on its own terms, but is slow in responding to stimulus. Tinnitus and auditory overload still persist. Have days when nothing soothes.

That wraps up four years with my five year personal review of symptoms coming up next year in 2025. I don’t look to recover completely, but would rather just pootle along the passing years, trying to be productive and sensory, until it’s my time to exit stage left.

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Great personal insight

Didn’t realise we’ve been on our own roads approx the same length of time

Do you have any future thoughts?
Caio
Simon

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Future thoughts? I don’t know, I haven’t had them yet. :grin:

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:rofl:

I did not mean a thought you are yet to have I meant a current formed, perhaps nascent, perhaps mature thought about shaping what you do in the future

More broadly I was interested in degree to which your orientation was/is past present future

Above you have 5 years. The fifth is referenced in ‘I’ll wait till I can look back’ terms. The whole is ‘there are the antecedent events & their impacts and the next few hours until sleep’

Schmahmann’s syndrome in part references language path ways. Others have shown that language is the conveyance of models of the world between conscieneses. The selection of words is affected by both

Another angle is that you may have felt any of a myriad of reasons to wish not to share/ examine/ explain/… And so used humour to deflect - or just made a joke or…

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@Rups thanks for sharing your journey & your thoughts.

I think this is a good way of putting it. I think i’d say something similar with some of my symptoms. But maybe we’ve just got better at managing them.

Is the reference to 5 years the point at which you say I’m going to move on from the constant looking for improvements & go ahead & live your life as best abd as full as you can as your are?

Hope all the other things you are dealing with are going ok too.

Best wishes

Ann

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Hello Rups,

always enjoy reading your posts, though I don’t check this forum as much as I used to. I’m just wondering if you have experimented with saccadic eye movements? I have, and the object of the training was to “access the brain through the eyes”, with a view to alter the brain, or fine tune it, as if reverse-engineering the eye-brain connection. I believe it helped me, but I did this training about a year ago on my own… initially following Arjan Kuipers at bran.rehab.

The cerebellum is one of the main components of our reptilian brain, and thus contains many secret / backup pathways to all sorts of systems that are replicated by our main higher brain functions. Through this mechanism, I believe many abilities lost after our stroke may be recuperated. (& I appreciate you cannot quite count on this backup system the way I can).

Anyway, thank you for your valuable testament four years post stroke.
Best wishes, ciao, Roland

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Missed you at the Thu pm sesh too. Geoff-T was saying how much a supplement you suggested was helping him :slight_smile:

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Thank you for the feedback, Simon. Yes, so sorry I missed the zoom, but the sun was out, and I spent 7 hours on my patio recharging my beloved mitochondria! It’s my number 1 therapy by a mile. Catch you next time. Ciao, Roland

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That was the Best thing then :slight_smile:

Well, people discuss with me the future, my future and the future of other things. I fail to take it in, mostly. The problem is, between me writing this and at some point leaving this chair to go and do something else, is often future enough. I don’t mean to sound glib, but my life in the longer term just feels mountainous, and I struggle to be able to take it all in. This may be at odds with my weakened impulse control, and if there is something projected in time, my brain yearns to attend to it now while it feels it can, so I avoid such thoughts.

I always had the five year review plan from the very beginning. It’s not based on any science, just from a conversation I had with another stroke survivor early on, and he told me that it was counterproductive to assume recovery was imminent (I called it recovery too, in those days). So, I wanted a marker that I could use as a measuring stick for the next subsequent years, and five years just seemed sensible.

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Shwmae Ann, no, the five year marker is a means to look back on progress and use it as a measuring stick for future improvements. It’s just a timeline because I like the idea of having a set period which can be used for reflection, and contemplation for the proceeding years to come.

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Shwmae Roland, yes, I practised many forms of exercises that relate to saccadic eye movements, of various kinds, over two years, but unfortunately nystagmus is untreatable, and sadly impedes rehabilitation, as when occurring there is no saccadic eye control. The issues I face are a combination of light change, space change, head movement and eye control. The challenge is that all these elements are constantly in flux.

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I see, Rups. Well, totally unrelated, but have you ever “experimented” with your vagus nerve? I thought perhaps you have looked into this? I certainly think this is a very good lecture on it:

I have recently finished a book “Our Polyvagal World” by Porges, and I have learned even more about this subject through my studies on Qigong. I just posit this subject on the off-chance it might be of help,

best wishes, Roland

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Interesting

We all straddle the isochron that is now. I am aware that in my case I look forwards and very rarely look back. Of course I am aware of all that has passed into history and it informs and envelopes now that is the crystallization of possible futures but my mental gaze is into the future.

As I muse now I wonder if that’s why I am seeking to create improvements in the infrastructure of care that we have to hand?

Reading your posts in this thread have me the impression that your orientation falls elsewhere. Always valuable to consider other people’s outlooks and for my own part I like to be exposed to those differences because I’m always aware how little of the possible options for the future are things that I can see.

:slight_smile: