Life after a stroke

April 2nd, 2020 | Author: Peter Scargill

A friend recently asked me an interesting question… someone who probably knows I write blogs, make extensive use of social media and create things like YouTube videos. I was asked if I had blogged about my experiences as a stroke “survivor”?

Brain

Warning – this blog entry covers a LOT.

I’ve spoken to several people about the subject and jotted down the odd note. No, I’ve not really blogged about my situation up to now as it never occurred to me that it might be helpful to others. So here goes, I hope someone finds this useful. I’ve also realised that Google calendar is screwing up past events so this will be my own hopefully reliable record of related events. I originally wrote this blog entry in 2019 and have just updated it in February 2020 in the light of new information, thoughts and feedback.

There are many aspects to what is commonly known as a “stroke” and no doubt I’ll miss some important stuff here but I’ll do my best. Firstly there is “having a stroke” about which I know very little as I was out cold under my office desk at the time, then there is the immediate to medium-term aftermath and the long-term recovery process and then there is society’s attitude to stroke survivors, not to mention occasional large-organisational incompetence – a combination of human empathy and help at best and gross ignorance and even callousness at the other end.

Someone asked me if the stroke had anything to do with the brain (such is the level of lack of understanding). I’m not entirely sure how it is possible to reach adulthood and not know that much… now is as good a time as any to find out if you don’t know, as strokes can, sadly, happen to anyone at any time.

The beginning: In December 2017 at age 63, having recently taken the decision to back away from an all consuming and very active tech and business life in favour of enjoying simply living (preferably in the sun) rather than work as many do, possibly until they are no longer able to enjoy travel) and while minding my own business on a Saturday night in my office as my wife and grand-daughter watched TV, I apparently had what is commonly called an ischemic stroke.

Don’t get me wrong, I was not retiring from electronics and computing, just from doing it for a living. The subject is much more interesting as a hobby (but I digress).

Bear in mind that up until this point I had been a much overweight but otherwise perfectly healthy and generally happy guy who even looked forward to Mondays and who was and is completely devoid of hypochondria while settling nicely into “retirement” and that in December 2017 I was busy ignoring the cold weather in the Northeast of England by blogging and reviewing high tech gadgets (as normal) in time for the Christmas.

The Stroke: Late Saturday night, mid-December 2017, one minute I was minding my own business, typing away on my PC in my UK office, the next minute I found myself on my office floor utterly unable to get back up onto my chair.

It is all a little vague but I recall my wife (and apparently my eldest grand-daughter) appearing and getting me off the floor and from that point my memory is extremely dodgy (I was taken to hospital quickly), at no time did I ever experience significant pain nor have I since. Weeks before the stroke I’d started to get some minor night-time hand pain due to a carpal tunnel problem and was waiting for the NHS to book me in for an operation. As you can probably imagine, that operation ended up being considerably delayed.

After the stroke “event” I initially spent a couple of days in a major hospital in the Northeast of England (as the rural hospitals do not have the necessary scanning equipment) and then spend six weeks in a hospital in Hexham and 2 weeks in Alnwick. We were in the process of house moving when this all started and were suffering issues with “tenants from hell” which meant my wife needed to change towns for a while and I volunteered to have the NHS move me to a different hospital to ease her travelling.

Basically most of that 2017 Christmas was lost to me but importantly, friends and relatives visited the hospital regularly and my wife was there just about every day. All of this happened with me being only partly “with it” for much of the first few weeks.

At first I lost pretty much all movement in my left side and my speech was slightly damaged as was my ability to get both eyes to coordinate with each other. Staying in a hospital bed for several weeks does not come without penalties and I ended up with pulmonary embolisms (lungs) from clots which most likely originated in my feet.

During my remaining time in hospital the doctors treated this latter condition with regular injections, then put me on a new pill which I guess I’m stuck with for life now.

If you plan to have a stroke – don’t do it at Christmas. I did thankfully, only hours after the stroke, get the “clot-buster” medicine which is common practice in the 21st century Western world yet many folk still have out-of-date views about strokes and stroke victims.

Because of the Christmas, the hospital was over-run with virii which thankfully missed me though I did get some kind of common cold, staff were off sick or on holidays (specifically much-needed physiotherapy staff) for some of my first few weeks in hospital but I have very few complaints about my treatment in general and as I learned (once I was able to think again), timing is key in handling stroke symptoms. I also learned that being highly motivated makes a BIG difference to results.

Unlike some others, my speech recovered rapidly and within days I was speaking fluidly but with my left side still looking like it was about to drop off.

After a month or so in hospital I was insisting on handling bathroom visits by myself, refusing a wheelchair as I could see that it was important to rely on aids only when absolutely necessary.

I eventually left hospital and returned home February 2018, some 2 months after the “incident”.

Back home: By the time I left hospital mid- February 2018 I had successfully navigated hospital stairs (twice), had been outside (in the cold weather) once, was talking more or less normally, had only a minor weakness in my left leg, meanwhile my left arm was weak but usable, my eyes seemed to be ok but my left (writing and typing) hand was still somewhat useless but improving.

Physiotherapy in hospital had been good when I could get it (no-where near often enough IMHO).

After I left hospital, I got a new community physiotherapist who kept in touch and I was given a home treatment regime which generally worked well except that no-one got around to telling me that post-stroke “shoulder subluxation” is common.

In short, my shoulder felt as if something had dislocated and it has never fully recovered though today, 2 years+ after the stroke, the effect is only one of minor inconvenience. Annoyingly once the shoulder subluxation happened I ended up with a semi-permanent or maybe permanent weakness that could have been avoided with the right advice early after I left hospital. At the time I had bigger things on my mind like rubbish long-term tenants who outstayed their welcome by some months so I ended up recuperating in a friend’s property.

Returning to normality (kind of): By April 2018 I’d convinced the (exceedingly slow and inefficient) DVLA (UK) that I was fit enough to drive – the optician tests they fund are somewhat simplistic and are based only around the ability of your eyes to work together with glasses as well as general fitness. The testing does not seem to take into account the biggest problem that occurred immediately after the stroke and which has never ENTIRELY gone away: concentration and “pattern-matching” problems – techies will know what I mean by the latter – though to be fair, my driving seems as good as ever (or as my wife would say, as bad as ever).

Despite initially having a no-doubt very skilled but somewhat pessimistic UK specialist looking after me, in April 2018 my wife and I took the plunge, got on a plane and and went off to Spain for 2 weeks to “test the waters” before planning our normal, much longer summer trip. That went well. By June 2018 we were back in our own UK home with lots of work to do – I was slow but could make a contribution to the restoration work.

By 2019 my walking and general look were back to normal, the left eye was and is weaker but looks normal and is “functional”.

Either the stroke or the weight loss or both (I went from nearly 20 stones to little over 14 stones in the first 2 months and I’ve kept most of the weight off deliberately by eating less and doing more walking) has/have left me really intolerant of cold but happy with heat, an operational shift up of several degrees (though the August 2019 heat-wave in Spain tested that latter claim to the limit).

Epileptic Fits: We returned to Spain in April 2019. “They say” that in the first few weeks after a stroke you might have an epileptic seizure. I didn’t. I’d never had such a thing before the stroke and didn’t have one until long after, late May 2019 when I was (not unusually) driving downhill in Spain by myself on the way to a local store.

Out of the blue, I felt a foaming at the mouth and did my best to get the car stopped and the clutch in. I got THAT far then went out cold. The next thing I recall, I was in a Spanish hospital having only slightly dented my own car and somewhat more seriously altered an empty parked car further down the hill. A helpful Spanish local contacted my wife for which I am grateful. I was out cold so I don’t know much about that. The other car owner handled the problem well.

At the hospital, the Spanish Neuro-specialist seemed to think the December 2017 stroke may have been instrumental in the May 2019 seizure as the damaged brain areas are adjacent to each other. Strange it took so long if that is the case. She said I’d had a “Tonic-clonic seizure. I wish I’d not looked at the photos.

From the NHS website:

Tonic-clonic seizures A tonic-clonic seizure, previously known as a “grand mal”, is what most people think of as a typical epileptic fit. They happen in two stages – an initial “tonic” stage, shortly followed by a second “clonic” stage tonic stage – you lose consciousness, your body goes stiff, and you may fall to the floor clonic stage – your limbs jerk about, you may lose control of your bladder or bowel, you may bite your tongue or the inside of your cheek, and you might have difficulty breathing The seizure normally stops after a few minutes, but some last longer. Afterwards, you may have a headache or difficulty remembering what happened and feel tired or confused.

Thankfully the gory parts of the above didn’t happen to me and I merely bit my tongue before passing out. After several hours in hospital, I was driven home by family and friends and after a little tiredness for a day or two thereafter, I’ve been fine ever since. Spanish law said I could not drive until I’d been seizure-free for 12 months. I have a pill to help prevent a repeat and British rules let me drive after 6 months of zero re-occurrence.

At the time of this update (April 2020) I was driving until recently on a DVLA cover note which won’t help in Spain and I’ve already filed a formal complaint as time after time, the DVLA reports the doctors send them which say I’m fine to drive.

My wife thankfully has up to now suffered no such health issues that we’re aware of. As a techy, I hate potential single-point-of-failure situations but we managed in 2018 and 2019 as my wife’s driving is just fine as usual. If I lived on my own, things would be VERY different. Both in the UK and Spain, friends have been very helpful, unlike the DVLA who are terminally useless.

The epileptic seizure occurred round 25th May 2019 and from then on I’ve been taking an additional pill every morning and night. I had my first visit to the Neurology hospital in Granada on July 4, 2019 to get checked up. The (female) specialist there seemed very happy as I was taking the pills and I’d since had no other obvious symptoms.

The Spanish specialist set up an appointment for me to come back for an EEG scan and on August 6, 2019 in the grip of a heat-wave, I returned, along with my wife and a translator to the same hospital where they treated me to the EEG. I was not particularly familiar with this kind of scanning, I am now, despite not fully understanding what the specialists were saying in Spanish (I went into the scanning room alone, they reckoned we didn’t need anyone else in there).

If you come across this, here’s my take on the subject of the EEG. After a 10 minute initial wait in reception in Granada I was taken in to have the equipment fitted, comprising a couple of probes on my chest, several more on my head (handily bald – I KNEW this would have benefits some day other than not looking old like some guys who hang onto the last few hairs when really it’s a lost cause) and a non-conductive mesh fastened over the top (I must’ve looked ridiculous).

From time to time, one of the staff poked a blunt needle around my head presumably to ensure the best signal for the probes while another staff member stared at a computer screen and a third typed results into another screen in their very nice room on the 1st floor.

I learned (the hard way) some new Spanish phrases that day like Spanish equivalents of “open your eyes” and “close your eyes” as they flashed a strobe light at me at various flash frequencies, had me open and close my eyes and alternatively breathe deeply or not. At the end of maybe 20 minutes or so, it was all over and they looked pleased.

Everyone at the Spanish hospital was certainly very friendly. They kept smiling and saying “It’s OK” convincingly in English. From what I can make out (I’m not stupid but I’m not a medical pro) the purpose of the EEG testing was to see if the strobing can induce fit-like symptoms, I’m not sure where the breathing comes into it but I was subjected to a wide range of light intensities and strobe frequency variations over the course of my visit.

As has always been the case, such strobing had no notable effect on me – to this day I stioll enjoy the kind of first person shoot-em-ups on the PC – the ones with warnings about epilepsy. As in the past, today I have no trouble with blasting aliens and North Korean soldiers into oblivion and other flashing-light-related activities.

By February 2019 I’d convinced the UK DVLA that I was once again fit to drive but the latter keep losing the reports so I’m still waiting for my licence which the Spanish authorities will need when Covid is eventually all over. I wonder if people realise how much stress is caused by uncaring public authorities like the DVLA.

Back to pattern recognition: A fundamental feature of human and animal life – it seems that people who too readily form audio, visual and general mental “patterns” are prone to believing things are real that only really exist in their heads – aliens, deities, ghosts – the list is endless. In my case, since the stroke, the opposite has happened to me and for example, I tend to have difficulties in differentiating important and un-important sounds in a crowded environment (by which I mean anything from a small party onwards). I also keep misplacing things.

I can hear just fine but sometimes, unimportant sounds just merge together for me. Visually I seem ok and my right eye remains totally unaffected by any of this. The left eye on the other hand (I should say the combinatuion of my brain and the left eye) seems to have residual muscle issues which hamper close-up computer operation somewhat. Opticians in these circumstances are generally powerless to help. I go to the optician, my eye is fine – I leave and hours later it is not. Opticians seem to work on the idea that eyes work or don’t work, as no-one ever asks “does your eyesight change through the day or through the week?”.

I did have a chat recently with the RNIB who indicated that the issue could be muscular in nature. I’ll follow that up once the UK is no longer in lock-down.

In terms of concentration: I write a little more slowly than pre-stroke and can type almost as well as before, but my left hand continues to confuse the S, A and D keys on my computer keyboard or forgets to lift off the keyboard which occasionally leads to multiple key-presses.

When programming, I seem to have retained most of my old skills but the massive (30%) dead space in my brain has somewhat dented my ability to multi-task. If I focus I can problem-solve as normal.

Friends and relatives: Some have well and truly stepped up to the mark, some have been utterly indispensable, others have either not been helpful or I’ve heard nothing from them in and my patience for the latter disappeared completely some time ago. If nothing else, such experiences teach you much about life and people.

So, dear reader, a stroke is without doubt a life-changer but they don’t always take control of your life. Even at times when things don’t look too hopeful you really MUST self-motivate as I have done (nothing new for me as a lifelong small-business type). It makes a lot of difference.

I’ve taken up once-a-week yoga in the summer and almost every day I stretch my arms, legs and fingers at every free opportunity and I blog a LOT. I’m not particularly keen on walking without a reason so I’ve trained two of our three cats to go for walks with me, more successfully in the Spanish summer heat than the miserable winter cold in the Northeast of England.

I hope you find the above enlightening or at least mildly interesting and if you ever find yourself or a loved one in a similar situation to mine, hopefully this record of my experiences may prove useful.

Regarding the drug prescription mechanism, has anyone noticed that some drugs come in 28-day boxes while others come in 30-day boxes – you may have noticed that most months have 31 days:-) Makes for fun when it comes to renewals.

I should point out at this time that I’m now becoming truly aware of just how little we still know about the brain and just how much of a problem this is. A good online channel to check for every documentary from medical through history to science is “Curiosity Stream”.

A close relative of mine had a stroke in 2019 and unlike me, suffers aphasia, which means as well as other issues, he often uses the wrong words when talking. I can only BEGIN to imagine how deeply frustrating this must be (and he’s not even “old”). Probably a LOT more frustrating than the CONTINUOUS mistakes I keep making every time I start typing – which is a daily issue.

At the other end of the scale I just spoke to one of my blog readers who recently had a stroke and within days was “only” complaining of balance issues. Perhaps a problem here is that we use the phrase “stroke” to cover such a massively WIDE range of brain-related problems? Some stroke survivors, months or years later can’t even speak, at the other end of the scale, others within days are suffering relatively minor issues (which obviously don’t SEEM minor at the time).