Three Hundred and Sixty-Five Days a Stroke Survivor

Today is my anniversary, so I was determined to make a post.

Exactly one year ago, on 11 September 2014, I had a stroke. Upstairs, washing my feet in the tub, I noticed a problem with my vision and had some difficulty getting back down the stairs.

It left me with impaired vision but I was lucky. One stroke in five kills.

If you live you have an 80% chance of losing movement, 66% of vision problems, 40% of losing speech, 40% of having difficulty swallowing, 33% of being unable to speak, 20% of dementia.

As you see from the arithmetic, most survivors will have more than one serious problem. Over half are left relying on other people to assist them with everyday tasks.

My loss is only visual, so I have been noticeably spared. I just lost the right-hand side of my vision. It’s exactly the same in both eyes and, as the specialist I met pointed out (with chilling but precise logic), this shows the eyes are not at fault, but the brain.

I had a few temporary symptoms after the stroke. For two or three days I was disoriented – familiar places outside the home seemed the same yet different and oddly alien. For several days I had photophobia and couldn’t bear bright lights on my right-hand side. I had to cover that side of my head up. For about six weeks  I saw a range of vivid hallucinations – Charles Bonnet Syndrome – but these gradually faded away.

The permanent effect of the stroke is the loss of sight on one side, in both eyes. The specialist predicted that this would mean I would not be able to read and at the time this seemed likely (from what I could see at the time). However I was resolute that I would not let this change my life or stop my career, so I bought assistive screen reader and dictation software and relied on these for a couple of months.

But gradually I found I didn’t need the software. I could read and type again, if not as well. Loss of vision on the right interferes with the eye movements that a left-to-right reader will normally make, scanning ahead along the line to see where the following words come, and where the line ends, so it slows up reading (or even prevents it in some cases, a condition called alexia).

However many patients spontaneously adapt their eye and head movements to compensate for the vision loss, and luckily this seemed to come naturally to me. It was rather as though I was learning to read all over again. For some time I struggled and then suddenly one evening it came: ‘I can read!’

My other big bugbear was visual location. When I put an object down I had difficultly locating it again. Often I mislaid things such as my keys or phone and was quite panicked trying to find them.

This problem is also related to homonymous hemianopia and the way it disrupts the eye movements we use to locate things. I found visual location difficulties much harder to overcome than learning to read again but quite recently I notice I must have developed new eye movements to compensate for this as well.

That’s why I say I am lucky. My disability is slight and I’ve been able to adapt and change. I’ve kept most of my independence. I don’t believe in providence, but I do believe I’ve been fortunate to survive and write about stroke.

 

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About partialinsight

One evening I had a stroke. Half my sight vanished overnight. Adapting made me grasp how amazing the visual system and brain are. It also taught me to understand disability completely differently and I'm grateful for the lesson.
This entry was posted in Blindness and visual impairment, Stroke, Disability, Cognition, Uncategorized and tagged , , , , , , , , , , . Bookmark the permalink.

4 Responses to Three Hundred and Sixty-Five Days a Stroke Survivor

  1. Steve says:

    As someone with the exact same challenge, I find myself nodding in agreement with what you’ve condensed down to a few short paragraphs. Not that such reduction really removes or dims the visceral horrors we have experienced on the journey to recovery, but it does perhaps help us focus on the destination. As a neurologist remarked to me some time ago, “If you’re intent on having a stroke, this is the best one to have …”
    Stay well. Here’s to the next 365 days of wonder.

  2. Thanks Steve!

    I tend to agree with the neurologist. I just heard that an ex-colleague has had a stroke and can’t speak. He can only get the odd word out and is incredibly frustrated. I’d hate that.

  3. Ben kiff says:

    Hi there just came to have a read, found your blog from your profile on the OU with the course iv started with you as my tutor.

    Iv seen many of your struggles with my father who is blind and has less than 2% of his vision left (due to a genetic disorder rather than stroke) but he’s the same he hides it very well and has managed to get on with his life regardless of the loss of sight. It really amazing the things you can set your mind to when you want to. He was telling me how one of his eyes moves up and down slightly and the other left and right he doesn’t notice it unless he has one eye closed but it tricks his brain into thinking that he’s seeing slightly more than he actually is. the brain really is incredible if not fragile at the same time. Anyway it was a great read and great to see you have the same mindset as my father does and won’t let it stop you.

    • Hi Ben, thanks for writing and I’m very pleased to be working with you!

      Thank you for telling me about your father, it’s really interesting that his eye movements allow him to see a bit extra. It certainly is very surprising how much we are able to adapt.

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