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)