Break it down

Recovering from a stroke is a daunting task.  Where do you start?  What do you do first? What movements need to be trained first? Second? Third? And if that wasn’t enough – what about the very low level stroke survivors?  The ones with lots and lots of impairments.  They have so much to overcome and the day is only so long…What do you prioritize?

Start with one task. Any task.  It almost doesn’t matter what it is – it just has to be important to you, to the survivor.  Walking, getting up from a chair, reaching to grab an object on the table, opening a door, holding a cell phone.  Any task that is meaningful is recoverable. I’ll say it again –

Any task that is meaningful to the survivor is recoverable.

Wait – what? I know some of you are thinking, “but that goes against what the doctors have told me” or “I’ve seen survivors with permanent disability so you must be wrong.”  I’m not wrong and I’m not an unrealistic optimist. Here’s why:

Those doctors aren’t thinking long-term.  They can’t possibly fathom the amount of time recovery takes or the amount of hours that go into it.  They’re taught that the brain, once damaged, stays damaged.  They’re taught to think negatively because in our litigious society, hope can lead to liability. They aren’t dreamers – they can’t be.  Let them handle your blood pressure and cholesterol but don’t let them dictate your prognosis.

And yes, there are stroke survivors who years later have disability. That doesn’t mean that they’re done recovering – it just means that they have “plateaued.” Their efforts and their training are no longer sufficient to challenge the system and promote rewiring.  They are living in the “status quo” because they’ve got a routine that they’re doing and they aren’t changing it.  Maybe they are comfortable with their day-to-day.  It’s safe and they’re not afraid all the time.  That’s absolutely okay – if they’re happy and they have a meaningful life that they enjoy!

But if they’re not happy or fulfilled (or you are the survivor and in that situation) – read on!

What to do:

To change the system you must challenge it to rewire and perform meaningful tasks – and you must do so REPEATEDLY. When I say repeatedly, I mean A LOT of repetitions and quite OFTEN. How many repetitions? While there is no “magic number” studies show that 1200 repetitions begins to activate new areas of the brain.  So there’s a starting point – more than 1200 repetitions before anything even begins to improve….

Well crap (excuse my language) – that’s a lot of repetitions just to get started. (sad face).  And when most of those repetitions are UNSUCCESSFUL there is another issue to deal with – frustration. Frustration is a rehab killer.  The hardest part of rehabbing Dad has been finding a way to eliminate or “push through” the frustration that comes with a lot of unsuccessful efforts.  In order for him to regain movement he has to try to move, but when he makes an attempt and nothing happens, his world comes crashing down again and again.  I’ve tried lots of things to help him through, but ultimately the ONLY WAY that has worked is to break the task down into small and achievable parts.

This is where my background as a physical therapist and a gymnastics coach have come in handy.  If you think of a task as a sequence of parts or a series of movements you can rehab your way back to doing anything. Remember – the brain is plastic (meaning it wants to rewire and learn new things), you just have to stimulate it.

Here’s an example:

The Task: Reaching and grabbing an object on the table with your affected side while sitting.

The steps of that task:

  1. Sitting in a chair with good posture
  2. Bending the elbow and lifting the hand off your lap
  3. Lifting the arm up off your lap
  4. Lifting the arm up onto the front edge of the table
  5. Extending (straightening) the elbow
  6. Sliding/reaching across the table with the arm
  7. Moving your hand close to the object – so that you can grab it (positioning it)
  8. Opening your fingers to place the object in your hand
  9. Closing your fingers around the object
  10. Squeezing the object with enough force to hold it

Now I’m guessing some of those parts you can do right now with success and some you can’t.  That’s okay – you have to start somewhere!  Take any of those parts (in any order you want) and try to do 30-50 attempts of one part several times a day. If you can’t physically move the arm or hand, that’s fine – you’re still trying to connect the brain and the arm so it counts.  If you’re tired of watching nothing happen, take a break from the physical and VISUALIZE IT (see the post titled “Day dreaming can be beneficial”).  That also counts toward those 1200 repetitions. After several days (maybe weeks depending on how many you do per day) and lots and  lots of repetitions – you’ll be able to do that part of the task!  You’ll see success and as Dad reminds me constantly:

“One small improvement leads to more improvements.  It just takes a little success each day to make you want to try again tomorrow.”

With one part down, it’s time to move on to another part and repeat the process.  Keep practicing the first part, but also add in repetitions of the second part.  Ta-da! You have an exercise routine that YOU created and YOU progress! And it’s got the big 3 “must-haves” for rehab and progress – It’s challenging in that it’s different daily and forces remodeling, it’s meaningful to you and it’s repetitive.

The best part of this method is that the possible tasks are endless and you pick what you want to regain most.  If you’re struggling to break something down and can’t think of the component parts – message me or leaving a request in the comments.  I’ll give you a break down of the task you’re working toward and help you learn the process so that you can do the next one.

And remember –

“Through perseverance, many people won successes out of what seemed destined to be certain failures.” 

 

 

 

 

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Day dreaming can be beneficial…

In athletics, mental imagery has been proven to improve performance and to allow athletes better focus (whether it be during practice or during competition).  It allows athletes to review the motor program and the sequence of their movements prior to participation.  It makes them better. Period.

Stroke survivors ARE athletes, so why not visualize the goals that you’ve set for yourself? Mental imagery can relax you, it can focus your attention and it allows you to see success immediately (something stroke doesn’t allow in the “real world”). Just thinking about a task or imagining that you are using the affected arm has been shown to activate areas of the brain and increase overall brain activity.  It helps relax you and can improve your mood.  It is effective as practice for movement even though you are not moving!  It can be done by any stroke survivor, no matter your level of current disability. And most importantly, it is SAFE!  Since you are not moving, you can use visualization anywhere and at any time without worrying about what could happen.

Oh yeah.  One more thing….IT WORKS! Visualization can improve motor function after a stroke!

So how and what do you visualize? How much and how often?

Well, the “how” is easy. Set yourself up in a comfortable chair and minimize all distractions (radio, TV, family, pets, etc).  Close your eyes and force yourself to relax.  Maybe take a few deep breaths to calm yourself before your start.

Now, the “what” is completely up to you.  It needs to be meaningful to you – so be creative and think about things that you are passionate about. (I have Dad imagine walking around Citizen’s Bank Park at a Phillies game – see above).  It needs to be challenging – so imagine yourself rehabbed and recovered, doing things that are beyond your reach now.  And finally, it has to be repetitive – so visualize the same task often during the day/week.  Try to start with 3-5 minutes at a time and work up to 10 minutes as you are able.

Make the images in your brain detailed.  Think about smell, sight, taste.  Focus on sensation (through your affected hand/foot) and allow yourself to imagine everything from temperature, to texture, to pressure.  Recall memories to fill in the gaps – what is the weather like? What does your shoulder feel like?  How heavy is your foot as you lift it?  BE SPECIFIC and don’t let any detail go unappreciated. Most importantly – be dedicated to the idea that this IS going to help you and that you ARE going to recover.  This visualization is a predictor of future events – not just a day dream.

 

 

 

At a loss for words

It’s been quite a while since I posted anything about my Dad’s recovery or about stroke in general.  I’ve avoided writing for lots of reasons – but the clearest to me is exhaustion.

Physical exhaustion.

Mental exhaustion.

And most importantly, emotional exhaustion. That’s without a doubt the worst and the one that I spend every waking minute trying to avoid.

For 15 months I’ve been Dad’s physical therapist, occupational therapist, speech therapist, cognitive therapist, secretary, day planner, health care advocate, chef, personal shopper, nurse, nurse’s aide, chauffeur, psychologist, personal trainer, maid and somewhere in there – his daughter.  I think my original role as “daughter” is the one I take on the least often.  It’s too exhausting to be that with everything else.  Being his rehab specialist in all other things is easier.  Less messy.  Less emotional.

Being his daughter is foreign to me now – so foreign that I’m forgetting what it was like when he took care of me.  I’m losing the Maryland games, the late night phone calls when exams were overwhelming me, breakfast with Dad at the diner…Maybe that’s why I’ve avoided being his daughter for so much of this.  I’m struggling to remember who he was before the stroke and every time I try, I slam the brakes on because I can’t hold back the sadness and despair that begins to seep in.

I haven’t written because writing forces me to face the emotional side of stroke.  And that’s where I’m at a loss for words. That is the side that rips out your heart daily and leaves you struggling to breath.  Watching Dad go through this is devastating – it’s easier to write his long-term goals and focus on the objective measures that mean there’s some improvement.  If I disconnect from him I can almost stay objective and am not paralyzed by sadness.

I’ve felt unable to advise others on this blog recently because recently I’ve only felt able to deal with the physical. As a physical therapist by trade, I’ve treated stroke before – but I stayed safely disconnected. Until Dad, I just didn’t get it and I feel like my former patients deserved better – needed more from me than just exercises and feedback. I missed so much about what stroke really is because I didn’t let myself  see the big picture – didn’t think that it was my job to appreciate or understand the emotional exhaustion that comes with it.

I’ll be better and do better. I’ll write something down tomorrow on this blog because something is better than nothing. Advice is better than silence. And for now, that’s just going to have to be enough.  Maybe tomorrow I can face the loss a little better and allow myself to let the emotions in.

Because stroke really is more emotional than physical.

IMG_3497

Dad and I, 2012

Don’t give up on your arm

As a PT, and now the daughter of a stroke survivor, I’ve seen my father’s left leg recover some function while his left arm hasn’t changed much in 8 months. Working in the rehab field and based on the current literature, it’s extremely common to see a stroke survivor walk somewhat efficiently with a limp while their affected arm dangles lifeless at their side – even years after their stroke. Clinical notes and textbooks argue that in most stroke survivors, the function in the leg comes back far ahead of, and often more completely, than the arm. 

It seemed like a consistent enough problem that the physical therapist in me has spent the past 8 months desperately searching for the “Why?” and what I’ve found is this:

There is no physiological or anatomical reason for this.

I repeat – there is no reason (based on the anatomy or neuro anatomy) for this discrepancy.  So what does this mean and why is the arm so slow to return? Why do so many stroke survivors never recover meaningful use of their affected upper extremity?

The best theory I can compile (based on my reading and experience) is that this is only because of functional needs. Simply put – it’s because you can’t walk on one leg but you can function with one arm. From day one post stroke the focus of recovery is to get you up and moving so you have to use the leg each time you step. It gets all the attention while the arm just hangs there!

The current “compensatory” direction of the rehabilitation system perpetuates this “learned disuse” of the affected arm by teaching you to function without it. The arm simply isn’t treated in the acute and subacute rehab setting because insurance and time don’t allow it.  Both give stroke victims such a limited window in which to recover that safety in the home environment becomes the goal – not rehabilitation of meaningful function. You’re taught to dress yourself with the good arm, eat with the good arm, use the cane in the good arm, reach back for the chair with the good arm and etc, etc, etc. I can’t even begin to express the despair I felt when Dad was told to “just use the good arm” all the time to do things like dress, eat and bathe during his time at rehab. He already knew how to use that arm. Why weren’t the rehab professionals working on the affected side!?!

Even more frustrating is this false notion that exists in the inpatient setting that PT deals with the leg and OT deals with the arm. I can tell you that this is lazy rehab. PTs are trained to rehab the entire body – not just the leg).  Even worse, OT didn’t work on the affected arm! It almost came to blows when I found out that Dad spent an entire hour in OT “practicing” ordering Easter dinner online.  They kept telling me that his “cognitive function” needed rehab too and when I said “isn’t that what speech does?”, his OT said “Ocupational therapy does cognitive rehab too.” Well then who the heck works the arm!?!? If the rehab world won’t help you what do you do? 

You work the arm.

You have to crawl before you can walk…

Start small. Begin with exercises that you can do daily that do not require the help of another person. Start with exercises that can be done safely while sitting. I’d recommend that you sit in front of a mirror so you can see your progress – work to make the movement even on both sides and move slowly and deliberately (no spastic or jumpy movements).

  1. Shoulder shrugs: Shrug your shoulders up to your ears and relax back down. Be sure to move the affected arm and do not let your neck bend sideways. Think of “good posture” throughout. Do 20-30 attempts multiple times a day.
  2. Scap retracts: While siting with good posture, squeeze the shoulder blades back and down. Focus on keeping the torso and head still and get that affected arm to move back with the unaffected arm. Do 15-30 attempts multiple times a day.
  3. Rock the baby: Hook the affected arm and the unaffected arm on your lap in front of you. Do this by resting the forearm of your affected arm on the forearm of the unaffected arm. Hold the elbow of the affected arm with your good hand for support.  Then slowly rock both arms side to side. Use  the muscles in the affected arm as much as possible and try to make the motion big – moving evenly to the left and right side. Do 15-30 attempts multiple times a day.

These are just a small start. Each of the above exercises work to help you regain control of the shoulder blade and the muscles that lift and support the arm for movement. Most PTs believe in regaining proximal to distal (muscles closer to the torso and then muscles farther down the arm). While it’s not the only theory out there – it’s got great support in the literature and I’ve seen it work wonders on Dad. Motion and strength are starting to return now that he’s no longer in the “inpatient” system and spending several hours a day working just the arm.

One thing to remember: If the affected arm is still weak and partially (or completely) paralyzed, be sure that you are protecting the shoulder by supporting it so that it does not sublux (hang down and out of socket at the shoulder). When sitting, place a pillow under it, use a sling when walking (but never leave it on while siting) and considering taping or bracing until the shoulder muscles start to support the shoulder on their own.  I’ll have a blog post about that in the coming weeks too (so much information, so little time).

Just put one foot in front of the other – and repeat x 10,000

Imagine that you decide to drive to Florida.  It’s nighttime and you don’t have a GPS.  You get in your car and find that your headlights are dim and you can only see 100 feet in front of you.  You hit the gas and can’t get above 30 mph.

Now what? How do you get to Florida?

You drive 100 feet at a time and make decisions about which path to take only when you can clearly see that part of the road. It’s slow going but that’s ok.  You’ll get there when you get there – the important thing is to keep moving forward.

When I was  Kinesiology major at Maryland, we were told that it took 10,000 hours of practice to master a skill. This “10,000 rule” has since come under fire, but the idea of repetition for mastery of a still holds merit. When it comes to training or rehabilitation, the question is just how much repetition and just how long until progress becomes meaningful?

Some days it’s all that I can do to keep Dad moving forward. He’s been an amazing and willing patient through all of this, but the honesty of the situation is that it’s a constant battle. Intrinsic motivation is hard to come by and the drudgery of everything can leave him depressed. While driving home from a particularly productive PT session yesterday, (many thanks to the owners of my clinic and to Traci, his PT, as Dad’s health benefits are long since run out) Dad caught me off guard.

“If it weren’t for you, I’d never have tried that independent walk on Saturday. You made it possible….I’m not sure how I’ll continue this when I go home to NJ. I don’t know what I’ll be able to do on my own.”

This past Saturday Dad walked about 40 feet independently, without a cane and with no one nearby to catch him if he fell.

It Was Monumental. 

Dad’s Solo Walk on Aug 15, 2015
We were at Maximum Performance Physical Therapy (specifically my company’s primary location in Laurel – I work in their Odenton office). My owners have been kind enough to let me use the space anytime the clinic is closed (as Dad’s actual PT benefits through Blue Cross would barely have rehabbed a sprained ankle let alone a massive stroke). That morning, before we left for the clinic, he had experienced an emotional meltdown over the task of getting out of a chair (sit-to-stand as the rehab world calls it). This happens more often than any stroke survivor or caregiver wants to admit. He was so focused on his “performance” of the task that it paralyzed him and he was then unable to do it at all. (This also is a common occurrence as his post-stroke brain is now working to manage all movements consciously with half the tools. I liken it a one-handed juggler struggling to keep all the balls in the air during a windstorm). Within seconds of the “performance error” we were in a cascade failure – the emotions he wrangles daily overwhelmed him. He was emotional and I was left fighting to stay afloat myself and bring him back to the “light.”  So, once at the clinic, my plan for the day was to attack the sit-to-stand and remove this monkey from his back.

After a few good repetitions, I decided that incorporating walking a few steps independently after standing up might allow him to see some progress. I reminded him that his focus needed to be on the left side (as the unaffected right side is automatic). He listened, and for the first time since his stroke – it actually meant something!  He stood up from one low PT table, walked 6 steps, turned and sat down on another table. I stood in between just in case and made him repeat the process 8 times. After sitting down to rest, a smirk crossed his face.

“You better watch out Ang. One of these days I’m just going to stand up on my own and go.”

The idea hit home and I decided his idea wasn’t half bad.  It would serve multiple purposes – to give him confidence in himself and to force me conquer my fear of letting him go without the safety net of my support.  If he said no, at least I’d be calling his bluff…

“One day? How about TO-day? Get up and walk over to that chair. No cane. No help. Just you.”

There was a fleeting look of panic that crossed his face. He scanned the room – took in the distance to the chair. His hesitation didn’t last. He took a deep breath and then there was only resolve in his eyes.

“Alright. Watch me.”

Now I was nervous. I trusted him and knew that he could do it, but letting go of the responsibility of his safety was surprisingly nerve-wracking.  I exhaled and tossed out one last series of cues.

“Remember – focus on the left. Take your time.”

He stood, walked away from me, crossed the entire clinic to the chair and sat down. His smile was the biggest I’ve seen since December.

“Get a video. This one’s for your blog.”

He went again. I got the video. He walked the distance two more times. When he finally sat down to rest he cried – his first tears of joy since December 25, 2014.

It’s no surprise that stroke recovery is a marathon and not a sprint. There are uphills where you struggle and progress feels like it comes to a halt (or reverses). There are downhills where you coast and gains come at you so fast you feel like you could handle this indefinitely. It’s constant and unrelenting with no breaks for the stroke survivor. Dad attempted to put it into words for me.

You wake up a stroke survivor. You eat your meals a stroke survivor. You walk to the car and go out to a restaurant a stroke survivor. You greet friends, answer emails and watch TV a stroke survivor. You go to bed a stroke survivor.  There’s no escaping it.

Rehabilitation is constant – your mobility impairments can’t be “put on a shelf” to give you a mental break. They are as much a part of you as your receding hairline or freckled skin.  As such, often caregivers also get no breaks. They have the same identity crisis in their day-to-day. They live each of their moments as the care giver to a stroke survivor and feel entirely responsible for their care and yet often helpless to alleviate the burden on their loved one.

At least, I do. Especially when Dad told me yesterday in the car that he didn’t know what he’d do once he was home and I wasn’t there. In that single statement he summed up my greatest fear in this process: That I won’t be able to get him far enough no matter what I do because it’s not my recovery. That the real burden lies on him – not me. He’s the deciding factor and I’m just here to help set him on the right path. No wonder parents are scared shitless when they have to give their kids freedom to live their own lives…

Dad left his house in Central NJ on Christmas morning with the intent of visiting my grandmother in South NJ and coming home that night. He planned on a 10 to 12 hour round trip (2 hours driving each way with our family’s Christmas festivities between). His stroke changed all that.  It’s been almost 8 months and he still hasn’t made it back home. Sometimes it crushes me just to think about that fact. His entire life has been in a state of suspension since December 25, 2014 and though we’ve given 110% each day, he’s still not ready to try to head home yet.
But today we are closer than yesterday and tomorrow we will be closer than today.
The key is to keep going, keep trying. It doesn’t matter how quickly you’re moving or what it looks like to others – rather that you’re moving forward.

Just keep putting one foot in front of the other…

And repeat x 10,000.

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…

There’s never enough small talk for shower time.

“Maybe I can still go and get my Doctorate in History someday.”

“Not a bad goal to reach for Dad. If you did, what would you write your thesis on?”

“I’d work to disprove the common belief that –(Civil War Commander)– was responsible for the –(Civil War battle loss)— at ———-. I’ve always felt that they got it wrong.”

“Sounds like that would be a thesis worth reading. Make sure I get a copy…. FYI: You missed the top of your left shoulder and your left thigh.  Grab that loofa and get scrubbing.”

Three to four showers a week leave for lots of awkward silence to fill with unrelated conversation.  I’m a master at small talk – I meet strangers daily at work whom I massage and see partially clothed before they’ve even decided if I’m legit-looking enough to be capable of healing them.  But, shower time with Dad left me struggling for topics and with a sinking feeling in my stomach.  (And no – it wasn’t just the parental nudity).  While consciously I recognized the need to help Dad shower (his mobility was so limited that he and Mom might get hurt if I didn’t do it) and was happy to be there to help, there was the feeling deep down that this was one of those life changing moments that you can’t take back.  Even more paralyzing was knowing that, despite his keeping the feelings to himself, every second in that shower relying on my help was crushing for him (and Mom) too.

Being a caregiver is unimaginably tough. Being a caregiver for a parent is beyond terrifying.  It’s a moment most of us face in our lifetime, yet none of us is ever ready for.  The role reversal for both parties causes high levels of emotional, physical and social stress.

When I voluntarily took on the role of caregiver for Dad, it was instinctual.  I knew that caring for my parents when they got older and needed it was something that I wanted to do. Family has always taken center stage for me.  My husband felt the same and we had talked about building our life in such a way that we could provide that support for both sets of parents should the need arise in the future.

“Life is what happens to you while you’re busy making other plans.”

What I didn’t see coming was that I’d have to step up to that role at 32 years old; Less than 3 months after I got married. Less than one month after I bought my first house. And at least a year before I even planned on having my own children. The timeline was all wrong.

I wasn’t ready.

In some moments, when Dad was having a particularly bad day, the negative emotions pushed through. This has to be mistake – this can’t actually be happening. Dad is my safety net.  He gives me advice over the phone when I’m overwhelmed.  He goes to the Maryland games with me and shares in my successes.  In the future he’s going to teach my kids to play baseball and cheer on the Terps with us.  He’s way too young to have a stroke…. And wait- aren’t I too young to have an aging and disabled parent? I was devastated, overwhelmed, sad and angry.  I saw friends having kids, getting married, vacationing and visiting their able-bodied parents (who were exactly what mine were just last fall).  These peers were doing the “fun” things that people my age were supposed to do.  In stark contrast, I was giving up all I could in my life (hobbies, friends, part-time jobs) to be available to help.  I felt cheated.  What was supposed to be the one happiest years of my life felt like it had been stolen from me and I was bitter, jealous and crushed. My husband also factored highly into my despair – he’d been an amazing supporter in all this.  He gave it all up along with me – just 2 and a half months after we got married – and he was living the same nightmare too. The guilt was desolating.

In other moments, when Dad had a small victory or I saw “him” in his eyes, my fight returned and I felt eager to continue and excited for the future.  While the task (rehabbing Dad to independent function) seemed almost impossible, I was the daughter best suited for the challenge.  I’m a Physical Therapist. I’m determined, hard-working and driven.  I have immense inner strength and the idea of “giving up” has never made sense to me. Beyond me, my family was ready to fight too. My husband, a personal trainer and coach with a strong knowledge of human movement and performance, was working with Dad when I couldn’t.  My Mom, a teacher in NJ, was willing to let Dad stay at my house knowing that Maryland was the better location for his recovery. She drove back and forth weekly, spent every weekend and many weekdays (taking unpaid FMLA) here and put her life on hold.  My brother came down during the first few months to cover when Mom couldn’t and learned some physical therapy techniques to assist Dad in his recovery. Family members called, texted and visited to show support. Dad had the best chance of anyone to make a miraculous recovery. If anyone ever had a better dream team for stroke recovery – I’d like to meet them!

So – what’s the point of my ramblings?  While there’s lots to take from this experience so far, the one certainty I’ve learned is:

Care giving is tough. 

There is no manual and you fail as often as you succeed.  You lose yourself in the day to day and the relationship you had (whether it be your parent, spouse or adult-child) permanently changes.  You go from the highest highs to the lowest lows in the blink of an eye.  Friends disappear, family falters, empathy and compassion at your work ceases.  While you’re never alone, (24-7 support takes all your time) you feel isolated and disconnected. You act insane and feel terrible about it (yup – I’ve yelled at my disabled Dad more than I care to share). You grieve your old life. You resent those who aren’t dealing with what you are. You pray, bargain and beg for some miracle.  You lose yourself.  You press on.

And it’s ok.

Sometimes there’s just not enough small talk for shower time.