Yesterday I Went To The Eye Clinic Again

St Lucy receives the supplication of a small figure representing the donor who commisioned this devotional painting. The scene is set against an imaginary landscape with water, rocks, palm trees and a meadow with a rabbit, a dove and a dog. St Lucy holds a palm leaf, and a cup with steaming vapour, probably containing an eye salve.
St Lucy, patron saint of eye conditions
(click to see the detail)

Yesterday I went to the eye clinic again.

This was a sixth-month-on review of my visual rehabilitation following a stroke.

I spent a long time in the clinic and as always was wonderfully impressed by the service, and the atmosphere of professionalism, kindness, interest and sensitivity. I met one old friend and made two new ones.

The verdict: doing very well indeed and I feel myself this is the case. I’ve been really lucky and know that. But my visit made me take stock of my progress.

The stroke only affected my vision, but meant I lost the right-hand side of my sight in both eyes – “right homonymous hemianopsia”. Every person with this condition is different in their own way, but here are some typical issues. If vision is gone on one side you’ll most likely have problems with one or more of the following.

1. Navigation – sounds like ships or satnavs but in terms of visual impairment it just means whether you can find your way around safely inside and outside the home.

2. Reading. When half of vision is gone then the normal eye movements involved in reading don’t work as before. If the loss is on the right then in western languages you are always reading into a blind area. If loss is on the left you have to hunt about for the beginning of the next line. Some people become unable to read and can only recover the skill with the aid of therapy.

3. Finding things – I think there should be a word for this. Imagine “where did I put spectacles down?” and looking round for them. I don’t mean hunting round the house, just knowing you put them down on the worktop a moment ago, so where are they now? Everyone  experiences this at times but if you are hemianopic it’s regular: you can just scan and scan and scan and still not see the specs. Then Boom! There they are, right under your nose.

4. Similar to 3: not seeing things, but ones you weren’t looking for, but forgot about. Such as the kettle of boiling water you knock over.

5.  Psychological problems. Losing a lot of ones vision suddenly, and losing part of one’s independence – because if you are hemiamopic you usually cannot drive anymore – are big blows. Many people experience depression and it’s very understandable.

Rehabilitation can come from recovery or from learning ways to work round problems, and I’ve experienced both.

1. I recovered a bit of vision at the extreme right-hand side: the “temporal crescent”. There’s a big blind area before I get that far east, but being able to see something out in the wings stops me colliding with street lights and so on.

2. I’ve learned to read more or less as before but by different methods. All my eye movements – the “saccades” –  are unconventional. I didn’t adapt consciously and it doesn’t result from therapy: it was just natural. At first I could read only poorly and with difficulty and relied on my computer to speak text aloud, but then gradually I found I could read somehow. I can remember the first time I looked at a newspaper and was surprised to find I could read it again.

3. No improvement at all here, except I’ve learned not to panic if I can’t see my phone for example. Still takes me time to spot it though.

4. I didn’t have too much problem here. Someone in the pub got beer all over them once, when I didn’t see a glass, but this was an isolated incident.

5. Perhaps this is where I was luckiest. I always imagined that if I had a serious health issue – and a stroke is one – I would be completely demoralized. I might be by some conditions, I don’t know. But I wasn’t by the stroke.

I’m not sure why, but think because it was a bit like being a child again. I had to find a new road and just explored.

Every day is a journey, and the journey itself is home.

Matsuo Basho

Credit for St Lucy
http://commons.wikimedia.org/wiki/File:Lazzaro_Bastiani,_Italian_(Venetian),_c._1425-1512_St._Lucy_and_Kneeling_Donor,_ca.1480-90_Kress_Collection.jpg

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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 Assistive technology, Blindness and visual impairment, Stroke, Disability, Cognition and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

9 Responses to Yesterday I Went To The Eye Clinic Again

  1. Goska says:

    Hi Richard! Very pleased to hear that you are coping so well with what must be a very frustrating condition, and that you have regained some sight.
    Re 5: Quite recently I suffered a serious illness myself, but like you, I did not get demoralized by it. The work on the recovery gave me clear focus, and being able to take positive action, and some control over my condition, felt good. But I am not sure how I would have coped if I had suffered more serious damage as result of my condition. Being able to attend a health rehabilitation programme and meet other people going through the same process was also of great help to me.

  2. Thank you very much for writing Goska, it is good to hear from you. I’m sorry to hear you have been ill but glad you felt positive, and are better now, I gather.

    It is almost as though when there is a clear plan and we ourselves have a large part in the planning and navigation – if we are informed but autonomous – it helps a lot. On our own journey you might say.

    I was never frustrated but if I had been paralyzed for example, I would have found that much harder to deal with. But I was fotunate.

    Take care and best wishes!

  3. Dave H says:

    Dear Richard,
    As a student who recently attended one of your tutorials at the weekend, I have to say how I’m utterly blown away with how you have met the challenges your circumstances have created for you – I had no idea what you had been through… I am learning many things, in addition to the course material from you.
    I have the children on alternate weekends but if I can assist in transport when I am free please don’t ever hesitate to ask (whether OU related or not).
    I’ve recently joined Makespace in Cambridge, where I have a chance to problem solve and get creative. I’m not sure on the details of the condition but I seem to remember seeing experiments where the mind can be tricked with prisms to inverting an image (the brain seems to be able to quickly flip the image)….
    … It got me wondering (purely speculating as I haven’t read around the condition yet) that if half of the wiring to both retinas are “blown” could a prism in the horizontal plane take the right hand image (say) and project it onto the part of the retina that is still wired? This may leave a large gap in the middle that could be equally as bad? May need some thinking or maybe it’s already been tried
    This may not be the place to suggest such an idea, but I just thought I had to say something. If there is anything I can do to help, please just ask.
    Kind wishes,
    Dave H
    M256 Student

    • hi Dave

      I’m overwhelmed that you have written in, it is very kind of you!

      Loss of personal transport is certainly a big problem. Prismatic lenses are actually used by some people in US and have contributed to them getting driving licenses back, but I’m not sure if it would be recognized here in the UK. I think there is a limit to what is possible though, in terms of the angle that can be used, and maybe some people would find them difficult, sort of like sideways bifocals if you see what I mean. Still I’d like to experiment with some!

      I’m interested to hear about Makespace. I don’t think we do enough to foster creativity. One thing I have been interested in is the potential of 3D printers to produce tactiles for the blind.

      • Dave H says:

        Hi Richard,
        Makespace is not for profit company that (after some string pulling) managed to get a space on the back of the engineering department of University of Cambridge. One pays a monthly fee (less for students) and you get the use of their equipment (once you’ve been trained). They have laser cutters (the only thing I’m trained on so far), CNC routers, soldering kit, CAD terminals, a 3D printer, lathes…the kit they have is here:
        http://wiki.makespace.org/Equipment
        you might find the following of interest…
        http://makespace.org/membership/
        There are around 200 members and growing. They do a family makers sessions on a Sunday open to all. The meet-ups are organised through:
        http://www.meetup.com/
        I think there’s something for most. I’m seeking to put something back, learn, & make friends with similar passions/interest as I go. Hoping to find a way of using java in the embedded world so I can learn through doing, as I tend to absorb better that way (never v good with exams).
        It sounds like the prism idea has already been thought of and may not be feasible/practical but I would happily prototype something including tactiles…
        Meant what I said re transport…If I can I will.
        All the best for now.
        Dave H

  4. Steve says:

    I’ve read & re-read this article a few times now and must say that it provides one of the best and most succinct guides to coping with HH that I’ve seen. I’m two years post ‘incident’ now and things are VASTLY better. I do remember, in the early days, breaking down when I was out with my wife in our local market town because I couldn’t recognise anything around me. The feeling of frustration, anger, loss, etc was just overwhelming! [I have since reasoned that the peripheral field lends so much context to what you are looking at that, when part of it is lost, what you are looking at can no longer be placed into context with your (visual) memories of places, views, etc.] I have moved on over the intervening months/years and (as posted elsewhere) have even been able to regain my driving licence, despite sharing a vision loss at least equivalent to your own. The big take home message though is that it gets better – even if that ‘better’ is just you being able to adapt and modify your lifestyle to cope with the new normality.

  5. I can confirm that it does improve, we adapt quite well as a species. But I feel that there is a lot that could be done to help HH sufferers, especially in the early stages.

    I was lucky to have a very good low vision counsellor. I’ve found my own way throughout but she helped a lot because when we talked – less than 24 hours after the stroke – she was positive and when I tilted a page of text to the side to compensate for the field loss and still read it, she said “See you are adapting already”. I was and she was right. But the consultant had said: “You won’t be able to read”. Worst-case diagnosis!

  6. Steve says:

    You were fortunate to have a good vision counsellor Richard. I think my own situation was one where I fell between different branches of the medical community and no one ‘grabbed’ me … My GP was good, and when presented with my symptoms recognised the likelihood of me having suffered stroke sent me for an immediate CT scan. My neurologist told me I’d had a stroke, that I’d never drive again, but that I was lucky that it wasn’t more serious (I paraphrase, but that ‘s what it boiled down to). My eye-consultant told me my eyesight was first rate (I wear contact lenses to correct for short-sightedness but have excellent visual acuity) but that I couldn’t see my left peripheral (which I think I’d already realised by then). The eye hospital, together with my local branch of the RNIB, could only suggest that I consider low-vision aids and seemed completely cold to the idea I had of me wanting to drive again(!). Eventually, with the help of my GP (who has been supportive throughout – although perhaps working in the dark some of the time), the eye consultant was brought on-side – but I do feel that it has been me that has driven the process. I’m pleased that you have had a supportive and constructive experience – and I would really like to think that this on-line resource might provide a beacon of hope and support for others with partial, sudden vision loss. (On that topic, I’m impressed with what you have here already, but do you think that hit might conceivably provide the basis for a more permanent website providing on-line resources as well as continuing with the valuable web-forum?)
    Regards – Steve

  7. hi Steve

    I had a very good counsellor and a very good GP and a very good consultant but I don’t think the process worked all that well. And I wasn’t all that well-informed myself.

    When I went to the GP after about 13 hours of stroke I didn’t know if it was a stroke or not. Thought it might be, hoped not. Now the doctor I saw was brilliant and for patient manner and consideration outstanding. She knew all about FAST and on the basis of it concluded I probably hadn’t had a stroke. My own tests on myself also passed FAST and so I felt really relieved. I was sent off to the emergency eye clinic with the optimistic possibility that it was retinal detachment (and to be fair my description of fracturing of the visual field pointed that way. But not in both eyes simultaneously.)

    But FAST is a system of positive diagnosis, it is not an all-clear. I did have a stroke and without blaming anyone it does now seem to me that stroke care in the form of an anti-thrombotic drug could have had benefits.

    Thank you very much for these posts because they help me to think more clearly what message should be passed back to the medical profession, and to the relevant charities as well. Next week I am going to a service user panel event at my local hospital – this is something for which I put myself forward – and they are clearly serious about understanding how they can improve.

    Best regards, R.

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