Category Archives: Interventions

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.

 

 

 

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).

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…

Move more

“Walking is man’s best medicine.” – Hippocrates

Move more.

It’s the most frustrating piece of advice that anyone who has had a stroke can receive.  Throughout this process, I’ve researched, read, observed and trialed dozens and dozens of techniques and interventions to help Dad in his recovery.  The one underlying theme that every study, every professional and every technique I’ve used has unequivocally suggested:

The return of function in the affected limbs take an immense amount of effort, movement and repetition.

Yup.  It’s that vague.  This is what discourages stroke survivors.  If they’re anything like my Dad they need specific examples, dosed exercise and constant reminders.  What this means for caregivers, family, friends and rehab professionals is that making a stroke survivor USE the affected side AS OFTEN AS POSSIBLE is the key to their recovery.

Turn this open-ended and meaningless suggestion into something tangible.   Any attempt at movement will lead to at least some improvement – there is no magic exercise. Any and all exercises will help! Need some examples? No problem –

  • Walking
  • Holding your phone in your affected side
  • Straightening and bending the affected leg
  • Shrugging the affected shoulder up and down
  • Bending and straightening the affected arm
  • Opening and closing the affected hand
  • Squeezing the shoulder blades back and together
  • Sit down and stand up multiple times in a row
  • Squeeze a pillow between the knees
  • Tap the toes on the affected foot
  • Etc

Now here’s where some people give up.  They can’t do any of those movements and the task seems impossible.  What then?  When I brought Dad home from rehab he could do NONE of those things (and still can’t do most of them).  If you, or your loved one, is in this boat don’t lose hope!  Even ATTEMPTED movements (mental imagery, small twitches, the act of just trying with no success) count as moving.  If you TRY to move the hand 10,000 times – research is saying that it’s beneficial and that your brain is rewiring to make it so (this is based on the idea of Neuroplasticity – something I’ll detail in another blog post).

So if recovery is as “simple” as “move more,” then why don’t more stroke survivors get meaningful function back? In my opinion there are three main limiting factors.  While I’m sure there are others, these are the ones I’ve observed (in no particular order):

First, the current rehabilitative healthcare system does not focus on recovery of the affect limb(s).  Much of what Dad was taught in the beginning of his rehab process was to “compensate” and use the good side for tasks.  What that meant was that his neglect of the affected side only got worse and worse.  My attempts at getting him to focus on the affected side were limited (as I could only be around him for 5-6 hours a day) as I imagine all care givers are.  But then what can you do to overcome this? Try talking with your physical therapist, occupational therapist, and speech therapist.  Let them know that using the affected side is the goal and they should work with you.  If they don’t – that’s a HUGE red flag that you’re at the wrong facility and you need to seek out new rehab professionals (something that is often only an option once you get to outpatient rehabilitation).

The second is factor is the emotional state that goes along with stroke recovery – the frustration, exhaustion and subsequent depression that come from trying to do something hundreds of times without instantly measurable success.  This is magnified even more with stroke survivors as often there is a change in personality due to the brain damage/trauma.  What you’re trying to accomplish is to teach the remaining healthy cells in the brain to learn how to move your body FROM SCRATCH.  The original cells that moved that limb are dead. Gone. Checked out. Not coming back.  There are so many reasons why this is so difficult a task (I’ll detail this later too) so please don’t get angry at yourself (or your loved one) when it takes a lot of time and progress seems very, very slow.  You are effectively starting with the motor control of an infant and having to learn the way they learn.  Unfortunately it is much harder for you because your brain isn’t in a developing stage, you’re much bigger and have more motions to coordinate, falling/failure is far scarier now and mentally you know you that you used to be able to do this. Don’t let yourself get caught looking back or getting angry with yourself.  You’re doing something truly difficult and amazingly impressive all at the same time! Stay positive!

The final obstacle is a combination of memory and motivation.  In my Dad’s case, the stroke caused him to lose the ability to sequence, recall, problem solve and manage time. He no longer thinks the way he did before his stroke.  Where he used to live life by a schedule, he can now sit for hours and hours without moving or even thinking to move.  He doesn’t see cause and effect the same.  He’s pathologically afraid of falling and failure. In these cases the demand on the caregiver and loved ones is immense!  Make lists, gently push and challenge, set schedules and try to facilitate independence by encouraging intrinsic effort on the part of the stroke survivor.  Use positive reinforcement and allow them to direct some of the tasks (don’t be surprised when they choose the ones they are good at).  Make them see that the harder and more frustrating the task (moving the hand, moving the foot – basically the things that they can’t yet do), the greater the potential future benefit.  And remember – It does get easier (for both of you).