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).

Hemianopsia: Half of vision lost

In the middle of January 2013, a month after my 70th birthday, I had a stroke.

First I had a TIA, a transient ischemic attack, a mild stroke caused by a blockage of a blood vessel in the brain. I felt dizzy and my vision became weird, but by the time a friend drove me to the Emergency Room all my symptoms had subsided and my vision felt normal again.

After many tests that showed nothing, I was discharged and returned home.  I felt fine for a day and then I started having migraines on the left side of my head and my vision would become disturbed.  I thought they were aftereffects of the TIA and drank shots of espresso which were effective in stopping the pain.

A week later I had an intense migraine to the left side of my head, my right eye was extremely painful and my vision was seriously affected.  I called the neurologist that I had seen in the hospital, but she could not see me right away.  So, I found an ophthalmologist who could see me next day, and made an appointment to find out what was wrong with my eyes.

In his office they did many tests including a visual field test. One eye was covered and the other looked through an opening. A light, like a star in the sky, would blink at different spots in a dark circle.  I had to press a button every time I saw the light flash.

The pictures below show where in my field of vision I could and could not see the flashing light. 

  

             left eye                        right eye

The areas where I could not see the flashing light at all are black.  The areas where I could see it all the time are white. The greyer areas are where I could sometimes see the flashing light and sometimes not. I was told that I had a visual impairment called Right Homonymous Hemianopsia or Hemianopia, a partial blindness to the right side of the visual field that involves both eyes.

I now know that some people can't see the whole right or left side of their visual field and the visual field test is complete black on the affected side. My Hemianopsia was milder, I could see some parts of the right visual field, but even so it was very disturbing.  

What were my symptoms? 

My field of vision felt as if it had shrunk. Things of the right side were very blurry. My eyes did not seem to work well together.  I got dizzy when I looked out the window of a moving car.  I got dizzy when I tried to scan grocery shelves or scan pages of books.  I had difficulty reading, I had to tilt the book or iPad, and I had to read each word like a first grader.  I could not see clearly the left half of people's faces when I looked at their nose.  I had to turn my head to the right to see fully things that were on my right side.  My peripheral vision did not seem to work correctly, things appeared suddenly from the right side and scared me.  I also had visual hallucinations: ghostly images that arose and dissolved.  And I could not mentally form visual images, like where the windows were in my bedroom, or how to go to my friend's house.

My sight is very important to me. It is the primary way I make contact with the world around me.  Not to mention that reading is one of my greatest pleasures. In addition the visual impairment made it impossible for me to drive. I had to depend on others to take me to doctors' appointments, to the grocery store, etc. 

And here I was, someone who could only see half of her visual field: a halfseer.  So started my journey to recover the part of my visual field that had been lost.

A video explaining hemianopsia can be accessed here.