I can read again!

 Possibly the most distressing and frustrating symptom of my hemianopsia was that I could not read.  

When I tried to read after the stroke, I got dizzy.  The right side of each page was blurry and darker.  The other half seemed to contain fuzzy letters and words that did not fall into an orderly sequence, they required tremendous effort of concentration to see and decode them.  I could not read the newspaper, books or emails, street signs, freeway signs, or food labels.  I worried that if I did not recover my ability to read I would not be able to live independently and I would never be able to drive again.

This fear gave me extra motivation to try and correct this problem. The ophthalmologist and the two neurologists I consulted did not seem interested, concerned or trained to deal with my reading problems. The optometrist I was referred to did not do vision therapy with adults.  I was left to my own devices.  

My initial efforts to read were tedious, frustrating and time consuming. I was not able to read books or magazines because the letters were too small. I did all of my reading on my iPad or the computer, where I could enlarge the size of the font so that I could see them clearly.

Initially, if I held the iPad in its "usual" position I could not see half of the screen and half of the text.  I experimented and found that if I tilted the iPad upwards on the right about 45 degrees, I seemed to bypass the blind area and see the words on the right side more clearly.  I found that easier than tilting my head to the right for long periods of time. 

For several days after the stroke I could only read in a letter by letter fashion. I was sounding the letters in my head like a first grader.  In addition, because of the visual defect I could only see the left half of each word, not the end.  To see the end I had to move my eyes or head actively or tilt the iPad, and even then I could not see a word as a whole. During that period reading was slow and difficult.  But I persisted because I wanted to give my eyes a chance to start reading again.  Increasing the font to nearly fill the page, I read and wrote emails, and read an ebook by putting the letters together to form words. 

And I had the visual hallucinations I mentioned in my previous post. Even when I could see the right side of a page by tilting the iPad, it was filled with moving shiny designs that would appear and disappear. The designs obscured the text.  I could see the letters and words but with lots of distortions. 

Ten days after the stroke I had the first scalp acupuncture treatment and the visual terrain changed. My visual field expanded to include more of the missing right side. The blurriness of the right side cleared a bit.  My eyes started to work better together. Upon returning home, I found that I could see and read a little bit better, that the letters combined themselves into words with less effort.

After the second treatment, I was able to see whole words rather than an aggregation of letters.  Reading was still effortful and tedious because the decoding of these words was very slow. After the third treatment, when I was being driven home with acupuncture needles in my scalp, I noticed that I could read some street signs and freeway signs while the car was moving. That was a very exciting development. After the fourth treatment, I could read longer freeway signs out of the moving car with greater ease. I went to the grocery store and scanned the shelves and read the labels without getting dizzy.  Shopping was slow but very satisfying.

One of the problems that people with right homonymous hemianopsia have is the way their eyes move when they read words. These eye movements are called saccades and hemianopsia seems to disrupt them. 

I have found a couple of interesting videos online illustrating the differences between normal and hemianoptic people when they read 5 words.

Timothy Hodgson, Professor of Cognitive Neuroscience at University of Lincoln, UK, has posted on YouTube two videos: one showing what the movement of normal eyes is like when reading 5 words, and one showing what the eye movement of someone with right homonymous hemianopia is like reading 5 words. The captions below each video are Dr. Hodgson's.

Here's an older control subject reading aloud sequences of 5 words slowed

down to half speed for comparison with the accompanying video of right 

hemianopic stroke patient doing the same task. Note that here there is

typically just one fixation per word. (This playback was captured from old 

Mac software via VHS tape(!) so apologies for poor quality)

   

Eye movements recorded from a patient who suffered a stroke leading to partial 
loss of vision on the right, reading aloud sets of five  words. Note relative to the 
other video showing reading in a healthy subject this patient is struggling to read 
across the five words, making many more fixations with reading ability severely impaired.

There is a lot of information on the web about the reading problems that follow a stroke and their rehabilitation. The inability to read is a condition known as hemianopic dyslexia or hemianopic alexia.  Unfortunately, at the time when I needed this information the most, I could not really read it.  So I had to invent my own rehabilitation tricks.  I started by noting what I was doing that was not working and correcting it.  

Even with the contribution of acupuncture, which seemed to accelerate the healing of the visual processing areas of the brain, reading required lots of effort and practice. Reading and understanding sentences is different from reading single words. I had to make a conscious effort to move my eyes from the beginning of a word to the end of it, so that I could take it in as a whole. I had to practice moving my eyes to see the complete sentence. 

I noticed that when I read words, I would first look at the beginning of each word and because of the visual defect I would miss the end. I started practicing focusing somewhere in the middle of each word, so I would see it as a whole. I later discovered that optometrists recommend that a patient should practice looking at the end of words and offer exercises to teach people that.  I have added a link to a page from the Hemianopsia.net website that describes optometric exercises and aids for reading rehabilitation. (see #5 in the references and resources) 

Sometime after the fourth acupuncture treatment, when I could read whole words, I discovered that if I focused my eyes about 10 to 20 degrees to the right of the midline of a page, I could see the whole page.  Using this strategy I could see the whole screen of my iPad!  I could see the whole screen of the television!  I could see the whole front panel of my car!  I started hoping that I could drive again.

What would I have done without an iPad and a computer?  I don't know.  I used the iPad as a reading aid and trainer. In addition, during the weeks when I was unable to read the newspaper, I listened to Audible's daily summaries of the New York Times.  I listened to several audiobooks.

I used the tiles of its screen to test my visual improvements.  In the beginning I could only see the tiles on the left side of the screen when I focused my eyes in the middle.  Then I started seeing the right side tiles as well.  Now, when I focus in the middle, I can see all the tiles on the screen but 3.  

I found and used iPad applications that test the visual field.  And, once my visual processing improved, I started playing games, and brain games that improve vision.  I will describe them in another post.  

A useful discovery was the online therapy program Read-Right for people with hemianopic alexia. It was  developed by the same people at the University College London Institute of Neurology, who created the Eye-Search therapy I described in a previous blog.  The video below describes the program.



Using Read-Right, I started reading an excruciatingly boring Agatha Christie mystery, whose text was being scrolled at the top of the screen.  After about 9 hours of reading practice, I was able to read at nearly the fastest scrolling speed of the program. I was about three quarters into the book, when I stopped using the program because my reading  finally felt fast and effortless.

Through the combination of  acupuncture and exercises that retrained my eyes to focus and move differently,  I am now able to read without eye strain and with increasing speed.  I do not need to increase the size of the font when I am using the iPad or the computer.  I am able to read print books and the Economist, a magazine of small print and much information. I was able to watch foreign movies and read the subtitles 45 days after the stroke.

Once I could read, I searched online for information about reading problems related to hemianopsia.  I found many  research papers and textbooks describing the reading problems of hemianopic patients. I have added links to several of them at the end of this post. 

Here's what I learned from them:

In Europe the condition is called hemianopia and in the US hemianopsia. Both terms refer to the same visual problem.  There are many different kinds of hemianopsia, depending on the location of the brain injury.  Each type has different reading challenges. Right homonymous hemianopsia, the kind I have, disrupts the motor preparation of reading saccades (eye movements).  Patients adopt inefficient eye movements and inefficient eye fixations, which make reading slow and frustrating.  Rehabilitation involves retraining fixations and saccades, which is what I did using my own observations and intuitions.

It is now 3 1/2 months after my stroke.  As I am typing this, I can see the whole screen of the laptop.  I am aware that I can do this because I am fixating my gaze a bit rightwards. If I look at the center of the page, I can't see a small chunk of text on the right side.  This chunk that I can't see has been getting smaller.  I can scan lines of text effortlessly and read at a very good speed.  

I still have to actively move my eyes to look on the right side of the keyboard to find the delete key. I still have a kind of right-side inattention, called neglect.  I will write about inattention in a future post. Some of the things I used to do naturally before the stroke, I now have to do intentionally.

While writing this post I realized how much work I have put into rehabilitating my reading capacity. I seem to have reached a plateau right now. I am still working on making my vision more efficient, but for the time being I am quite satisfied with what I have accomplished.

References and resources

1. Impaired reading in patients with right hemianopia. (click here to read abstract)

2. Page on Homonymous Hemianopia on the website of the North American Neuro-Ophthalmology Society. (click here to read)

3. Article posted on the Hemianopia Society website: "Patients with hemianopic alexia adopt an inefficient eye movement strategy when reading text". (click here to read)

4. Chapters on acquired visual defects in a textbook of Neuro-Ophthalmology by Joel S. Glaser. A very scary book describing the wide range of visual disasters that can befall stroke victims (click here to read on Google Books)

5. Excellent resources with exercises developed by optometrists at The Hemianopsia.net website: Reading problems after Stroke or Head Injury. (Click here)