Of neglected impairments and functional neurology

In the field of stroke rehabilitation, hemianopsia is considered one of the neglected impairments. These are impairments of the senses that probably affect up to 60% of stroke patients (1). These neglected impairments have not received systematic attention by neurologists or rehabilitation therapists. Both the practice and research of stroke rehabilitation have focused on and have tried to correct motor and speech deficits.  In recent years there has been some interest in the rehabilitation of vision.  But very little, if anything, has been done for thousands of people who, after a stroke, are unable to smell, taste, hear, or have feelings on areas of their skin. 

I too had one of those "neglected impairments", and I did not know that I had it. The three neurologists I saw after the stroke did not bother to check for anything other than possible motor defects. 

Then, once my vision improved and I became able to drive, I went to visit my step-daughter who is a naturopath and lives in Walla Walla, Washington.  She set up a consultation with a colleague of hers, Dr. Dale Elmenhurst, a chiropractor practicing functional neurology (2). 

What is functional neurology?  It is a treatment modality based on principles of brain plasticity. It offers therapies that enhance the performance of areas of the brain that have been affected by stroke or other injuries.  Click here to read more about functional neurology.

Dr. Elmenhurst did a thorough exam.  He assessed sensory deficits in addition to the motor and visual ones.  And from his assessment it became obvious that I had a problem with my sense of smell. I could barely smell anything through my left nostril.  To test my olfactory sense he used several little bottles emitting different smells, aromas that were unfamiliar to me.  He had me close my eyes and the left nostril and tested from how far I could smell each smell through my right nostril. I could smell them from a considerable distance. Then he had me close the right nostril and test the left one.  He nearly had to put the bottle inside my left nostril for me to smell anything.  He then tested my merory of the smells, and the right nostril could remember the order the smells were presented to me.  The left one was a dud.

I had mentioned to the neurologists I had consulted that after the stroke I had lost my appetite.  I had told them that  I had to remind myself to eat and the food tasted dull. It was not a topic that they paid any attention to. The discovery that my sense of smell was impaired and the exercises that Dr. Elmenhurst suggested have helped improve my appetite and restore the pleasure of eating. 

My smelling exercises involved smelling herbs and spices through my left nostril with my eyes closed. I discovered that I could not tell oregano from mint in my garden, if I tasted them or smelled them with my eyes closed. I had to hold the spices I was smelling, cinnamon and cumin, so close to my nose that I was constantly sneezing.  But after many repetitions my sense of smell started improving.  Now, after all this practice, I can close my eyes and tell oregano, dill, mint, verbena, thyme and basil apart.  My left nostril is not as adept as the right one in smelling, but it is getting better.

From working on improving my vision and my smell I learned this: there is a very simple principle that should guide one's efforts to rehabilitate one's brain after a stroke.  It is one of the central tenets of functional neurology articulated by Dr. Datis Kharrazian in his very interesting book "Why isn't my brain working?"(Elephant Press, 2013). 

Brain rehabilitation can be simplified by saying "whatever you can't do is your rehabilitation program"... Start very slowly with functions that are difficult but do not cause you to crash, and work you way up. 

I have found that this strategy has three parts: 

First one has to figure out what is not working.

Second one has to find out what to do to improve it.

Third one has to get oneself to do it.

If you are lucky to find professionals who can assess the problem and prescibe exercises, then the whole process is more or less easy.

In the absence of experts who can test and find out what is not working, the first part requires that one pay meticulous attention to one's behavior in order to find out where the deficits are.  Then to find out what to do about them there is the Internet which is a bottomless source of information. Lastly, one has to discipline oneself and make oneself perform tedious and repetitious exercises and tasks over and over again. This requires considerable focus and persistence.   But the efforts pay off in terms of regaining function. 

So now I can see better, I can read real fast and I can drive. I can smell better and food tastes quite good. After several months of fixing this and that I am taking a break from all exercises and improvements.  I feel that I have rehabilitation fatigue.   What is left to work on is my memory that was also affected by the stroke.  I will write about that in my next post.

Sources and resources

1. Click here for an interesting review of rehabilitation research.

2. Click here for a link to Dr. Elmenhurst's website.

I can drive again!

Right after my stroke I thought that I might never be able to drive again. That thought was very depressing and disheartening.  If I could not drive again, I would have to always depend on others to take me places. I live in a rural area with very limited public transportation.  My son suggested that I might have to move somewhere where there would be more access to public transport.  But I love it here. I am in the country, on a mountain, with woods and creeks to hike along, with deer, squirrels, racoons and birds all around. I did not want to move.

As my vision slowly improved, I started feeling kind of hopeful that I would be able to drive again.  But the road back to driving has been long and tedious.  I have had no access to a rehabilitation program or facility.  The neurologists I consulted were of no help whatsoever in terms of helping me recover my vision.  I was left to my own devices.

I was scared.  Driving a car is a huge responsibility.  I would be putting my life and other people's lives into danger if I did not correct all the deficits that were interfering with my seeing well.  And in that I had to be both evaluator and trainer: I had to establish criteria of what "seeing well enough" for driving was; and I had to find ways to correct the visual problems that interfered. 

In my previous posts I have described in detail the problems associated with hemianopsia and stroke, and how they were addressed. Here I want to describe the process of dealing with these challenges in order to be able to drive again.  

Overall, I felt that as each visual challenge was resolved, its absence made another one more evident. It was like peeling an onion!  And then, one day there were no new problems arising, and the extent of the impairment was so reduced that I could live with it and drive with it.  Getting there involved a process that was very tiring and at times tedious. It required that I pay meticulous attention to what was happening, what I could and could not do, and that I invent ways to start doing what I could not do.

This is what happened in the beginning as a result of the acupuncture and the eye exercises: 

• The dizziness subsided
• The visual field expanded
• Letters started combining into words easily
• I could see and read words and sentences out of a moving car
• My capacity to visualize returned and I could plan trips in my mind
• The visual hallucinations diminished and then stopped
• The "blind area" started shrinking

At that point I became very aware that there was still a distortion in my right visual field. And it was a critical distortion because it could mask the presence of a car or a pedestrian or an animal. I tried different ways to remove it from view.  I found that moving the midpoint of my vision a few degrees to the right made the blurry area fall outside the image I was looking at.  I practiced this consistently when I was the passenger in a car and eventually I could see the whole road without any visual blurriness. I also practiced scanning the road from left to right and back again, repeatedly scanning to see what was on the right, the problem side.

Then I noticed that being in traffic was very tiring to my eyes.  I would often feel overwhelmed and need to close them while I was being driven places.  Acupuncture helped with that. I think it improved the speed with which my brain processed visual stimuli. I also spent a lot of time observing what I was doing and how I was feeling while looking out of the passenger side windows.  I wanted to understand the sources of the overwhelm.  Was I overdoing the scanning? Did I need to practice getting used to looking at many moving objects?  Soon it became evident that the source of the visual fatigue was not the constant scanning. My brain did need more exposure to multiple stimuli.  And a major contributor to the overwhelm were my emotions.

I noticed that cars coming from the right scared me.  They made me anxious and somehow confused.  That is when I realized that the one-sided inattention and the memory problems, which I mentioned in my previous posts, were contributing to confusion and overwhelm.

Cars would appear on the right and would startle me.  How did that happen?   I watched myself watching the road.  I would look to the right, see a car, then look straight ahead, then look to the right again and get startled.  I appeared to have forgotten that there was a car there.  So I practiced adding words to the visual stimuli to improve the remembering of them.  I would think: "black car on the right".  I would then look forward repeating the words, then look back to the right, and there was the black car as I was expecting.  After very many such repetitions, (really very very many), the whole thing became automatic, and I stopped having to do it consciously.

Then I started expanding the number of visual stimuli I would name.  I would look to the front, right, left and the side mirror and name and try to remember all the vehicles around the car I was in.  In that way nothing would surprise me, distract me or scare me.  At the same time I was doing exercises at home to improve the processing of visual stimuli on the right side, and improve my visual memory.  

I got to a point where, as a passenger, I was able to scan, see and remember everything around the car. I could visualize the whole trip and give instructions to the driver. I could read all the signs. I was not getting startled by cars or motorcycles weaving in and out the traffic.  I did not feel visually overwhelmed by being in a moving car in heavy traffic.   

But I was still worried that I might not see cars, bicycles, people or animals because of my "blind area" or the one- sided inattention.  Yes, I could read, I could see the entire field, I could cope with the many stimuli of the road, but what if I got distracted and stopped paying attention to the right?  Again I spent lots of time practicing "attending and naming and remembering" what was on the right, checking and counterchecking.  

Car trips were very fatiguing and tedious for a while.  But slowly things got easier and my attention seemed to be able to do what it was supposed to do, that is stay alert and focused.  

So, one day I drove from my house to the post office at a time of little traffic, and I practiced all the things I had been doing as a passenger.  After a week of cautiously driving around the community where I live, and noticing what was going well and what needed correcting, I dared drive to the next town, 4 miles away.  At first I drove when there was no traffic, and a few days later I drove when school was letting out and I had to stop constantly to let people cross the street.

The article on hemianopsia and driving from the hemianopsia.net website that I list below (1), mentions an experiment where evaluators assessed the driving performance of people with normal vision and of people with with visual defects. In that study 73% of the people with hemianopsia were assessed as being safe drivers.  The article's authors stress that each case of hemianopsia is different and that the deficits to be addressed are both cognitive and visual.  In the absence of formal and professional evaluators, I had to be my own evaluator and assess my cognitive and visual deficits and my driving performance.

When local driving was evaluated as adequate, safe, and not stressful, I decided to drive on the freeway. The first time I did it with another person in the car.  As that was a pleasant and uneventful trip, I decided that from then on I could drive by myself and even go on longer trips.  Since then I have been driving near and far, alone and with passengers, remaining alert and vigilant all the time.

I made only one mistake during my "training" period.  The first time I drove at night, I parked in front of a driveway that was on my right and that I did not notice.  I got a ticket for $63. That motivated me to pay double attention to where I was parking and to what was on the right.  

My advice to people who are trying to get back to driving with some degree of hemianopsia is to find a professional to evaluate them and rehabilitate them so that they can drive safely. But if this is not feasible, then they will have to do what I did: develop a rehabilitation plan and execute it step by step.  Repeat things endlessly until they become automatic.   Do not get discouraged when progress is not fast enough.  Brains are plastic and they can heal themselves, but they require lots of practice.  And finally, be very stringent evaluators of their performance behind the wheel.

In my own rehabilitation I received lots of help from scalp acupuncture.  There are also several other aids to improving hemianopic vision that can facilitate safe driving: prisms that can be added to glasses, and different apparatuses for visual restoration therapy. I plan to write about them in a next post.

Links

1. Click here for a very interesting article on hemianopsia and driving from the heminopsia.net website.

2. Another interesting article on hemianopsia that addresses driving can be accessed here.

3. For State's vision requirements for driving click here 

Improving visual memory

After the stroke I discovered that not only could I not see properly, I also could not visualize, that is create images in my head.  I remember trying to visualize the way to my best friend's house and being unable to do so.  Then I tried something simpler, I tried to visualize the doors around the hallway in my house, and was equally unable to do it.  The part of my brain that made images and held visual memories had been affected by the stroke.

There was another way the visual memory problems evidenced themselves:  I would forget objects that I had seen just a few seconds or minutes earlier. For example, as I was being driven around I would look at the car on the freeway lane to the right.  Then I would look at something else. And when I would look back again to the right I would be surprised, even startled, to see a car there.  It was clear that I did not remember having seen it before. 

What did I do?  I'm sure that if you have read my previous posts you guessed what I did.  I started playing memory games on my iPad and my computer.  

There is an app called Cognizin with a game that involves matching pairs of cards with the same designs.  I started playing the game with 10 cards, that is 5 pairs.  In the beginning I needed lots of repetitions to find the matches.  Now I can play the game with 30 cards, that is 15 pairs of cards, and match them with no mistakes.  As you can imagine many repetitions of the game were needed before this was achieved. There are also several "brain games" on Cognizin's website, including picture matching games of increasing difficulty. (Click here to access the games page).

On the BrainHQ website and the iPad app there is a game I love.  It is called "Eye for Detail" and it improves visual working memory. (Click here to read about it). 

Another website and iPad app with visual memory games is Lumosity.  I played the game Memory Matrix that exercises spatial recall: the ability to remember an item's location in space. (Click here to see all of Lumosity's games).

To improve my memory of the "road", I started practicing naming the car(s) on the right, their color and position, then looking away, then looking back after a while to see if I would be surprised to see them.  Putting words to the picture seemed to help and soon cars coming by on the right did not startle me any more.

By playing memory games online and practicing remembering what I saw in the real world, I started recovering the capacity to visualize, and to remember what I had seen before. I could visualize going through the grocery store, aisle by aisle, and plan my shopping.  I could remember all the cars around the car I was in, those to the left, the right and the back.  And when I could do that without any problems I knew that I could start driving again without worrying about having an accident.  The route to driving will be the topic of my next post.  

Look twice and then again: dealing with one-sided visual inattention

Another frustrating symptom I had to deal with was an inattention to things that were on the right, the blind side of my visual field.  I found that this is called one-sided visual inattention or neglect.  It is a common problem after a stroke. It can range from mild to very severe.  Luckily my right-sided inattention was mild.  Still it was frustrating.  It took time and energy to correct.  And most importantly, I could not drive until it was corrected enough to make driving safe.

At first I had so many disturbing visual symptoms that I did not notice the inattention.  But once my visual field cleared and expanded, and the hallucinations became smaller and then disappeared, I noticed that I had some trouble finding objects, if they were on my right side.  I would walk by the desk looking for a pen that I knew was there and not see it. That was puzzling, because by that time I could see quite well into the right side of the visual field.  The same thing happened when I practiced Eye-Search.  When the stimulus jumped to the right side, it took me longer to find it than when it was on the left side.

I started observing myself and experimenting and I developed the following hypothesis:  my brain processed what was on the right side of the visual field slower than what was on the left. However, my brain did not know this. It had developed a habit of looking for something for a certain number of seconds. If, within that time interval, it did not see what it was looking for, it decided that the object was not there.  

It became obvious that I needed to teach myself to look longer and more persistently when searching for things on the right. This is a tedious and tiring undertaking.  It involves forcing the eyes to scan through the "blind" side. And it involves being constantly aware of the attention deficit and compensating for it, by looking repeatedly and longer on that side.  And the hardest part was not the doing of it, it was "remembering" to do it.  

I had to train myself to look twice and then look again, until I found what I was looking for. What I used to do naturally before, I had to do intentionally now. 

• When walking, I practiced scanning consciously and repeatedly the right side of my visual field. 
• When reading, I practiced looking at the end of a sentence on the right first, before I started reading from the left. 
• When I was being driven around, I practiced looking and noticing what was on the right side.  
• Whatever I was doing, I kept telling myself, look to the right, look to the right, notice what is there, remember what is there.  

I was helped in improving and tracking my right-side "speed of detection" by playing online "Brain Training" games on Posit Science's BrainHQ website. (In another post I will describe them in detail, but you can click here to access their website). 

I focused on those that aim to improve one's brain speed. One of these games is called Hawk Eye. It involves presenting a group of birds for increasingly shorter time intervals.  One of the birds is slightly different and the player has to find it.  In the beginning, when the "odd" bird was on the right side, it took me much longer to detect it. Slowly my performance improved and I was able to move to more difficult levels of the game.   

Over time the "looking to the right" became more automatic and the finding of things slowly faster.  There is still a difference in the speed of detection of things between the two sides, but it is getting smaller.

An article on visual inattention by the British and Irish Orthoptic Society (1) notes that visual inattention is more a disorder in "looking" rather than "seeing".  Treatment involves getting the patient to look into their affected side. This is exactly what I found that I needed to do.  

Here are links to pages with information about visual inattention or neglect.

1. The British and Irish Orthoptic Society offers a very informative patient leaflet:  Visual Inattention after Stroke. (Click here)

2.  The Hemianopsia.net website has an excellent page on visual neglect and its rehabilitation. (Click here)

What happened to my brain and I can't see well?

I have been very curious about what happened to my brain that resulted in  right homonymous hemianopsia. I wanted to know the exact location of the injury caused by the stroke. I felt that my right eye was not working well, yet I knew that both eyes could not see the right side of the visual field. I wanted to see a picture of what was going on. 

 Eventually, one of the neurologists I saw looked at my MRI and drew a rough picture of the brain and the location of the stroke for me.  His picture inspired me to search online for "maps" of the brain that showed areas of damage to the visual pathways and the resulting visual defects.

A Google search showed me a variety of images and drawings that have to do with Hemianopsia.  I chose two drawings to include here:

The first one comes from a website called "StudyBlue.com"  that offers digital study tools to students.   It is part of the neurology notes of Jared Rickert, a student of osteopathy at  Still University. (Click here to see his notes).

I chose this diagram because it is very simple and clear.  It shows a brain that has been sliced at the level of the visual system.  The eyes are in front. Optic nerves come out of each eye.  The nerves from the right side of each eye carry information about what is on the left side of the visual field.  These nerves go around the right side of the brain all the way to the visual cortex on the back of the brain.  The nerves from the left side of each eye carry information from the right side of the visual field.  These nerves go around the left side of the brain back to the visual cortex.  That is the reason why someone with an injury to the left side of the brain, like myself, becomes blind to the right side of the visual field.  

The black lines with the numbers next to them represent damages or "cuts" to the nerves from stroke or brain injury. Each "cut" is numbered and corresponds to a particular visual defect that is drawn in the numbered circles to the right.  The dark area in each circle is the area that is blind.  

A person who has had a field of vision test and was diagnosed with a visual field defect, can look at the picture above (or the one below) and find in a general way where the damage that caused the defect is located.  The drawing above  shows what happens when the damage is on the right side of the brain, which affects the left field of vision.  When the damage is on the left side of the brain, the right field of vision is affected in a similar way. 

• To see and explore additional drawings of visual field defects and other Hemianopsia images from Google Search, click here.
• A chapter on Visual Fields by Robert H. Spector in a textbook on Clinical Methods has a very good medical description of the location in the brain of particular field defects and their consequences. (Click here  to read the chapter).

What the world looks like with hemianopsia

In the beginning right after the stroke I found it difficult to describe what the world looked like out of my eyes.  People could not exactly understand my visual reality from the verbal descriptions of my visual field.  Once I could see and read better, I started looking online for pictures that would approximate what my vision was like after the stroke.

I eventually came across a website, Forkintheroad.com, that makes goggles simulating different types of visual impairment.  The goggles are meant to be an educational tool for helping health care, rehabilitation and education professionals, care providers, and friends and family better understand some of the abilities and limitations brought on by visual defects.

The picture above is a simulation of what the experience of Right Homonymous Hemianopsia is like.  The visual field is blurry on the right side, some objects are partially visible through the blurriness and some are not at all.  My hemianopsia was slightly different in that I could see the lower areas of the right side. However, when I looked at people's faces or at the page of a book, the right side was blurry just like this picture shows.

The Fork in The Road website offers goggles and pictures for many different types of visual problems.  (Click here to link to the  website).

Exercising the eyes in the natural environment

 Computer based scanning exercises are great for retraining the eyes to scan.  However, the range of eye-movements they require is limited to the size of the computer monitor screen.  The visual field in the real world is much wider.  To view it and scan it properly the eyes need to practice in real world settings.

The Hemianopsia.net website points out that in treating hemianopsia...

"The first step is to train the patient to make large exploratory eye movements (saccades) into the field of loss... After the large saccades are developed, smaller more precise saccades can then be trained. The third step, we recommend is to improve speed in real world situations. The fourth step is to attempt to integrate the scanning into real world activities". (Click here for the whole page.)

Here are some exercises I did that I have found helpful:

1. To expand the scanning arc of my eyes (make larger saccades), I did slow eye rolls, up and down, left and right, and all around, while "looking" and "paying attention" to what I saw.
  

2. Every time I entered a room I scanned it from left to right and back again. This helped me become more aware of what was in front of me, as well as the areas that I could not see clearly. 

3. I put small bright balls at the corners of window sills across from my favorite chair and kept moving my eyes from one end to the other.

4. I practiced looking for and finding things that were in the blind side of my visual field.  I placed objects on the right hand side of then dining room table, of the kitchen counter, of my desk, and each time I entered the room I looked for them.

5. I also played lots of computer games and puzzles that aim to improve vision.

Resources

Website with eye exercises 

Livestgrong.com (Click here)
Stroke-Rehab.com (Click here)
Hemianopsia.com  (Click here)

Websites with games and puzzles for improving vision

Eyecanlearn.com (Click here)
Visionnorthwest.org (Click here)
Edhelper.com (Click here)

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)

My visual hallucinations and Dr. Charles Bonnet

 Once my vision became better organized and scanning the environment felt normal, the symptoms that interfered most with my seeing what was there and kept me from driving were the visual hallucinations. 

Visual disturbances were the initial symptoms of the stroke. They came together with migraines, but continued after the migraines stopped. In the beginning the right side of my visual field was covered by a chess board with yellow and black rectangles.  Then the chessboard was replaced with pretty decorative designs of different shapes and colors. Sometimes I saw scarves or clouds moving in the wind.  

Then I started seeing people.  Faces would pop up here and there, or whole bodied people.  For a while they were stationary, appearing next to me or across the room. For a couple of weeks they were moving towards me, or across the living room in front of me, or crossing the street in front of the car.  Whether they sat or moved they all turned, looked at me and smiled. Their presence felt very reassuring.  

After a couple of weeks of smiling people, the visions became smaller in size.  I started seeing dogs and cats crossing the room, or sitting in different places in the house. In the garden I saw butterfies and birds.  Then the designs returned, but they were smaller and less obtrusive. When I was reading little mushrooms or elves or colored shapes would pop up on the right margins of book pages. Sometimes the images would move away from the text, but often they would cover it and interfere with reading.  When I moved my eyes looking around I would often see small shapes or colored designs that would appear and then dissolve.

The neurologists I consulted were uninterested and uninformative about these symptom.  Again I had to resort to Google.  I Googled "Visual Hallucinations" and found out about Charles Bonnet.

Allan Bellows has written an amusing and informative article on "Chuck Bonnet and the Hallucinations" in the website www.damninteresting.com.

Here are some excerpts:

In the year 1760, a Swiss naturalist named Charles Bonnet became concerned when his grandfather Charles Lullin began to experience a parade of "amusing and magical visions." The eighty-nine-year-old Lullin was being visited by visions of people, birds, carriages, and buildings, all of which were invisible to everyone but him...

...Bonnet's grandfather did not demonstrate any other signs of marble loss, in fact he seemed quite sane aside from the vivid hallucinations. Moreover, the elderly man was keenly aware that the strange sights were all in his mind. Bonnet cataloged his grandfather's curious circumstances, and over time the condition he described came to be known as Charles Bonnet Syndrome, or CBS. Numerous similar cases have been recorded in the decades since, and though it has long been regarded as a rare disease, recent evidence suggests that it is much more widespread than previously believed...

...For those stricken with Charles Bonnet Syndrome, the world is occasionally adorned with vivid yet unreal images. Some see surfaces covered in non-existent patterns such as brickwork or tiles, while others see phantom objects in astonishing detail, including people, animals, buildings, or whatever else their minds may conjure. These images linger for as little as several seconds or for as much as several hours, appearing and vanishing abruptly...

...The exact cause of Charles Bonnet Syndrome is not presently known, but the popular theory suggests that the brain is merely attempting to compensate for a shortage of visual stimuli...

...One of the most thorough studies of the phenomenon was undertaken at the University Hospital in Nijmegen, the Netherlands, where 505 visually handicapped patients were involved. Of those, it was found that sixty-three had experienced complex visual hallucinations in the four-week period before screening. Psychiatric examination of the patients revealed no other disorders which might cause such side effects. This and other studies suggest that as many as 15% of people with vision loss experience Charles Bonnet Syndrome hallucinations to some degree...

...Some Charles-Bonneters are able to banish their phantoms by changing the environment in some way-- such as turning the lights on or off-- though most of the time a patient is subject to their visions' whims. Others have resorted to befriending the apparitions, making idle one-sided conversation as the imaginary guests stare quietly. Fortunately the condition is almost always temporary, and in most cases the visiting visions fade away forever after twelve to eighteen months...

Click here to read the whole article.

Over the last 3 months my visions have shrunk in size and have become very infrequent. I attribute their fading away to the acupuncture and exercise regimen that I have followed.  Their disappearance, in addition to my improved capacity to read and scan, has made it possible for me to start driving again.  

Here are some additional resources for people with visual hallucinations. Click on the underlined letters to access the webpages.

Vision Aware: Why am I having visual hallucinations?

Lighthouse International: Charles Bonnet Syndrome

RNIB: Charles Bonnet Syndrome 

PsychCentral: Learning to live with Charles Bonnet syndrome