At World’s End…

In 1492 Columbus sailed the ocean blue…

At that point in time, most sailors felt that if you sailed to the horizon, you’d fall off the earth. It had an edge and beyond that edge there was nothing. That was fact in their mind and those that argued the contrary were being illogical.  There was no way of persuading these sailors through talk or discussion. They believed what they believed so fiercely that there are stories of crewman commuting suicide rather than continue on to what they “knew” was certain death.

In the mind of a stroke survivor suffering from what is known as hemispatial neglect (or simply neglect) there is a strong similarity to those sailors. After a stroke, hemispatial neglect eliminates the existence of their affected side. It’s not that it’s weak or damaged – rather it does not exist (and never did). It’s been wiped clean off the map and the blank area left has been removed too. For a stroke survivor in recovery, to shift their weight onto that foot is as difficult as persuading sailors to brave the edge of the World in 1492.

What is hemispatial neglect?

Hemispatial neglect is a neuropsychological condition in which, after damage to one hemisphere of the brain is sustained, a deficit in attention to and awareness of one side is observed. It is defined by the inability of a person to process and perceive stimuli on one side of the body or environment. Hemispatial neglect is very commonly contralateral (opposite) to the damaged hemisphere (right hemisphere damage leads to left sided hemispatial neglect). 

Hemispatial neglect results most commonly from damage to the right cerebral hemisphere (right brain) causing left-sided visual neglect, neglect of the left side (arms/legs) and neglect of left space (objects, rooms, etc on the left side of a person’s visual field). This means that neglect is more common with stroke victims whose left side is affected.  Right-sided spatial neglect is rare – because there is redundant processing of the right space by both the left and right cerebral hemispheres (Researchers feel that this is due to the majority of the population being right-handed).  Did I lose you?  No worries – it’s a complicated concept.  Basically if your stroke affects the left side of your body you are very likely to experience some form of left sided neglect. In fact – 75-81% of patients with right brain damage and left-sided weakness do at some point in their rehab!

What does “neglect” look like?

Stroke survivors with neglect show symptoms across a wide spectrum (yup…you guessed it. Every stroke is different).  In the most severe cases, neglect means that they ignore, forget about and avoid their affected side.  For a caregiver or therapist this can be immensely frustrating (I’ve cried many times when Dad “fought” against my corrections due  to his neglect). So – if you haven’t seen it, what does neglect look like? Here are some examples:

  • The affected arm is left hanging, bumped into walls and often unrecognized as their own limb. 
  • The affected leg is dragged, causing tripping and falls. The weight never shifts to that side and the joints are held rigid.
  • The torso leans and the spine twists.  While the literature is split on the “common direction,” I’ve witnessed Dad falling into a “C-curve” toward the affected side and twisting towards the affected side (putting the unaffected side forward).
  • The visual field on the affected side is ignored.  If an object is off to that side, they can’t see it. They don’t read that side of the sentence/page (In Dad’s case he only read from the middle of the page and over to the right – ignoring everything on the left side).
  • Direction and spatial awareness are non-existent.  Navigating rooms at the hospital, rehab center or even in familiar places is very difficult.  (In Dad’s case he walked the wrong direction when trying to retrace steps and couldn’t verbalize directions from memory – such as getting from his front door to the office upstairs in his home. It’s scary to see because it seems like a cognitive deficit – but it’s more than that.)
  • Visual scanning is from the unaffected side to midline (middle of the torso): The visual field is limited and scanning does not progress to looking at/toward the affected side – even though they are trying to and think they are. 
    Trying to get Dad to "look left" for a photo in March.  Notice that his head is left but his eyes aren't.

    Trying to get Dad to “look left” for a photo in March. Notice that his head is left but his eyes aren’t looking at the camera – he was trying and thought he was; that’s visual field neglect.

  • Only partial objects are perceived (including self). When asked to copy or recreate what they are seeing on paper, often only half of the image is drawn. (The example below is from a stroke text).  When asked to shave/wash their face they ignore half.  When putting on lotion or washing the torso, only the unaffected side gets attended to.

300px-fig_neglect_drawings

  • Objects are perceived as complete when they are incomplete.  For example, when I asked Dad to look at a full clock face that I drew and critique it, he said “Your clock isn’t complete.  You only have numbers 1-6 on there.” He saw only the right side of my clock and didn’t even consider that the other numbers were there – he just wasn’t scanning for them.

Alright, so while knowing what some of the symptoms are from an outside perspective, it’s far more important to sympathize with what a stroke survivor is actually going through.  This is what will help you to rehabilitate them and progress them once certain obstacles are overcome.  This is what will keep you sane when you want to scream out in frustration (and you will…a lot). So, what does “neglect” feel like to a stroke survivor?

I’m taking these from discussions that I’ve had with Dad – there’s no additional resources as in the list above.  In the time since his stroke, he’s done a great job describing this experience for me – something that I am immensely thankful for.  As there is no scholarly literature to cite, I’ll just say “left side” vs affected side as he had a right CVA and his left side is affected.

  • You never had a “left side.”  You lived your entire life without a left leg or left arm and it seems ridiculous that anyone would insist that you did.  It would be like someone trying to convince you that you had a third leg by saying “Use your other leg.  No – not your left.  No – not your right.  Your other leg.”  When I first got Dad to touch his left arm in the ICU his response was “Angie, move your arm.  It’s in my way.”
  • Your midline is the end of space.  As in the metaphor about Columbus’ crew above – there’s nothing beyond it.  You see no reason to look past it as there is nothing there and it is as far left as exists.  You wouldn’t shift your weight past it because you would fall.
  • You are unable to find objects on the left side because the left side isn’t important. Why look there? Often Dad would call these “gotcha” moments accusing me of placing an object down after the fact as if I were playing a game or trying to trick him. In his mind it wasn’t there until I told him about it and slid it over to the right so it was in front of him. As he recalled later, “things get lost on the left.”
  • Incomplete objects are complete. You see half your face and that is normal.  You see half a clock and that is normal.  You read half the sentence because that’s all you see on the line – causing you to feel that the book is poorly written rather than consider that you misread it.  The other half does not exist.  End of story.
  • People on the left side are behind you or just out of your sight. I spent every minute that I was with Dad in the ICU on his left side.  I’d tell him to “look at me” and he would turn his head (never his eyes).  I initially thought this meant that I was overcoming his neglect through early intervention.  Later he told me that it was irritating and rude that I always made him turn behind him to look at me and suggested that since he was recovering I sit in front of him instead. Clearly I had his attention, but I wasn’t as successful as I’d thought in addressing the neglect.

Interventions for neglect:

If you are the caregiver (or therapist) for a stroke survivor suffering from neglect, there are things that you can do to help them reorient themselves and reintegrate their affected side.  Just realize that is is a complicated task and takes immense patience, lots of repetition and a long time. (We are currently entering month 8 post stroke for Dad and there are still many many improvements to be made). What you are trying to do is to rewire the remaining healthy brain cells to recognize the affected side of the body and of the surrounding space. This is a daunting task.  Start early – day 1 in the ICU and continue until there is no longer any perceived neglect!

  1. Place yourself on their affected side. Sit on that side.  Greet them from that side.  Take selfies on that side.  Converse with them on that side. Force them to look at you (often they won’t make eye contact unless cued to do so).
    Taking a selfie to make Dad look left (I was also on his left to force his attention).

    Taking a selfie to make Dad look left (I was also on his left to force his attention that way).

  2. Touch their affected side. While in the beginning there is a strong chance that the sensation on that side is absent, incorrect or diminished, the nerves in the arm/leg on that side are intact – they just have no place in the brain to signal!  By rubbing, touching and patting (gently) the affected side you are sending signals up to the brain.  In time the brain will find a new place for these inputs and rewire to recognize them.  Cold or warm also provide unique sensory stimulus and can vary the input that the brain has to organize. You can track progress by documenting what areas the stroke survivor can feel (do this with their eyes closed and touch one joint at a time beginning with the closest to the torso and then out). Usually you will see sensation come back from proximal (closer to the torso) to distal (toward the fingers/toes).
  3. Place objects of interest on their affected side. Lay their cell phone, their water, the remote, etc on that side so that they have to scan for it and reach to that side.  It seems cruel, but it’s the only way! (Make family, friends and nursing staff aware of this as well). If the survivor has the use of both arms – great! Make them reach with the affected arm.  In Dad’s case the left arm was completely paralyzed so often he was reaching across with the right.  To ensure that his left arm got attention, I would place the object on/in the left hand to make him engage it!
    IMG_5715

    Ice water was Dad’s only request while in the rehab center. We used that to our advantage and always tried to place it on his left side.

  4. Angle them so that their interest is drawn to their affected side. Turn them so that the TV/radio is off to that side.  Sit them on the couch so that the door or window is off to that side.  Have visitors help! Ask them to stop and knock on the door frame before coming in.  Have them wait until they are greeted and recognized by the stroke survivor before coming in the room.
  5. Work on strategies to ensure the entire visual field is scanned. From reading to walking, draw the attention to the neglected side with cues and corrections.  If there is neglect in reading, have the stroke survivor read out loud or highlight to ensure that the entire page is read. Practice drawing objects and correct for missed details.  Use crosswords to practice looking across the entire page.  Play games like “I spy” when entering a new space or room.  Have them navigate themselves when going in or out of a new medical office/store, correcting them only after a mistake. The list goes on and on.  While I’m sure this may feel condescending to some – think of it as teaching a child from scratch.  Each “new discovery” is a chance for the brain to rewire.  Use educational strategies but BE RESPECTFUL AND AGE-APPROPRIATE as the survivor is not actually a child and will already feel self-conscious of their limitations. Dad has voiced over and over how being “talked down to” has crushed him emotionally. 
  6. Make them use their affected side. This is a topic I’ll address further in an upcoming blog post titled “Compensation is a dirty word.”  The basic idea is to force them to rewire and strengthen the affected side and to do that requires use.  Start with the simplest of tasks (see the “Move More” post) and work up to more complicated tasks.  As a caregiver you can assist them in dressing and bathing by MOVING the affected side for them while asking them to try and use it throughout!  Make them remember what it felt like to have 2 working arms and legs – DON’T teach them to use just 1.
    Making Dad "hold" a bottle to engage the left side

    Making Dad “hold” a bottle to engage the left side (even though he had no grip yet).

  7. Use a mirror to make them to look at themselves.  Neglect means they only see HALF of themselves unless cued.  Have them wash their ENTIRE face or brush ALL of their teeth. Ask them to check for food in the corner of their lips (both sides) and encourage them to “square their shoulders.”  Use the mirror to get them to shift weight onto the affected leg by asking the to “even themselves out” based on their reflection.  Be creative – think of all the things you do daily that require attention to both sides and go from there. As an aside here – Recognize that often they don’t want to look in the mirror because their reflection is just another reminder of their condition. It’s ok – Talk them through it and be sympathetic. There’s were moments when Dad and I both feared up as his reflection (I cried because he cried). 

Along with all that – Be sure that you do not allow them to rely entirely on their good side. Neglect will cause them to become even more dependent on the good side and to use the affected side as simply a place holder – even in walking and moving around.  Watch them stand up and make sure they aren’t just doing it with the good leg and that the weight is even.  Do they “hop” from good leg to good leg while walking without standing on the affected side (they will land “heavy” on the good leg and spend almost no time on the bad leg).  Have them focus on taking even steps and have them listen and try to make the footfalls sound the same. Watch them turn while walking – is it like Nascar and always the same way?  If so, make them turn the other way!  Check their posture during the day and cue them to sit up as often as they’ll let you.

Remember – it takes time. Neglect is complicated and often worsened by the weakness on the affected side.  Be patient.  Be consistent. Be sympathetic.

Because sometimes you have to fall of the edge of the earth before you can get to the other side…

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