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Life after a Stroke

A friend asked me an interesting question last night… 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?

Taking Simba and Ruffy for a walk this eveningWell, the short answer is that though I’ve spoken to several people about the subject and jotted down the odd note, no, I’ve not really blogged about my situation as it never occurred to me that it might be helpful to others, so here goes, I hope someone finds this useful.

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”, there is the often long-term recovery process and then there is society’s attitude to stroke survivors – a combination of human empathy and help at best and gross ignorance and callousness at the other end. Indeed, someone asked me if this had anything to do with the brain…

In December 2017 at age 63, having recently taken the decision to retire from a very active tech and business life and enjoy simply living (preferably in the sun) rather than work as many do, possibly until they are no longer able to enjoy travel) 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. Bear in mind that up until that point I had been a much over-weight but otherwise perfectly healthy and happy guy, completely devoid of hypochondria who was settling into “retirement” and that December was busy ignoring the cold weather in the Northeast of England by blogging and reviewing high tech gadgets in time for the Christmas.

Late Saturday night, one minute I was minding my own business typing away on my computer, the next minute I found myself on my office floor utterly unable to get up. It is all a little vague but I recall my wife appearing and getting me off the floor and from that point my memory is extremely vague (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  ended up being considerably delayed. I eventually left hospital and returned home mid-February, some 2 months or so after the “incident”.

I spent a couple of days in a major hospital in the Northeast of England (as the local ones did not have the necessary scanning equipment) and then spend 6 weeks in a local hospital and 2 weeks in one further afield (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 much of that Christmas was lost, some great friends visited me regularly and my wife was there just about every day. All of this happened with me being only partly with it 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 they 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 stoke – 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 and one reason why many folk have very out-dated views about strokes and stroke victims. Because of the Christmas, the hospital was over-run with virii which thankfully missed me, staff were off sick or on holidays (specifically much-needed physiotherapy staff) for some of my first few weeks in hospital. I have no complaints about my treatment in general but 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 who had a stroke at the same time as me, my speech recovered rapidly and within days I was speaking fluidly but with my left side 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.

By the time I left hospital in February I had successfully navigated 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 and 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 (not often enough IMHO) but back at home, no doubt due to NHS funding, I was down to typically one visit a week. I could of course not drive during any of this.

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 a if something had dislocated and it has never fully recovered though today, 18 months after the stroke, that feeling is only one of minor inconvenience. Annoyingly once it happened I end up with a semi-permanent or maybe permanent weakness that could have been avoided with the right advice early after I left hospital..

By April 2018 I’d convinced the NHS I was fit enough to drive (their tests are somewhat simplistic and are based 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 is still there in the background 18 month later, concentration and “pattern-matching” problems – techies will know what I mean by the latter. More on that below.

Despite having a no doubt skilled but utterly pessimistic specialist looking after me, in April 2018 we 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 2019 my walking and general look (apart from deliberately keeping off the weight I’d lost in those first few weeks and months after the stroke) were back to normal, the left eye was and is weaker but looks normal and is functional.

Either the stroke or the weight loss (I went from nearly 20 stones to little over 14 stones in the first 2 months and I’ve kept the weight off deliberately by eating less and doing more walking) has left me probably permanently intolerant of cold but happy with heat, an operational shift up of several degrees.

Epileptic Fits

“They say” that in the first few weeks after a stroke you might have an epileptic fit. I’d never had such a thing before the stroke and didn’t have one until long after in May 2019 when I was (not unusually) driving downhill in Spain on my own on the way to a local store and suddenly 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 damaged my own car and seriously altered a parked car further down the hill. I can tell you as much about that as I can about my stroke – absolutely zilch.

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 says I can’t drive until I’ve been seizure-free for 12 months. I have a new twice-a-day pill to help prevent a repeat and British rules should let me drive after 6 months of no-re-occurrence so fingers crossed I could be back in the driving seat before long. My wife thankfully has up to now suffered no such health issues that we’re aware of.  I hate potential single-point-of-failure situations but we seem to be managing and her driving is just fine as usual. If I  lived on my own things would be VERY different.

Back to pattern matching – a fundamental feature of human and animal life – it seems that people who too readily form audio, visual and mental “patterns” are prone to imagining things that are not there like ghosts and aliens. In my case, since the stroke the opposite has happened to me and I tend to have difficulties in differentiating important and unimportant sounds in a crowded environment (by which I mean anything from a small party onwards). I can hear just fine but sometimes I am incredibly easily distracted by unimportant sounds. Visually I seem ok and my right eye remains totally unaffected by any of this.

In terms of concentration, I write only a little more slowly then 18 months ago and can type almost as well as pre-stroke 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 often leads to multiple key-presses. If I could just turn off the stupid auto-repeat, that would help.

When programming, I seem to have 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. The (pleasant) Spanish Neuro-specialist I saw recently seems to think the December 2017 stroke caused the May 2019 fit as the damaged brain areas are adjacent to each other.

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 it doesn’t necessarily have to take control of your life. Even at times when things don’t look too hopeful you really MUST self-motivate. It makes a LOT of difference. I’ve taken up occasional yoga and almost every day I stretch my arms, legs and fingers at every free opportunity. I’m not particularly keen on walking for no reason so I’ve trained 2 of my cats to go for walks with me here in sunny Spain, usually at night.

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.

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