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).

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ICU Tunnel Vision

“I felt so much that I felt nothing.”

The first few days after Dad’s stroke were surreal to say the least. We no longer lived day to day, but were existing only minute to minute. Doctors kept telling us to “be guarded” and that “it would get worse before it got better” – phrases that seemed scripted and further added to the nonsensical idea that we weren’t actually living this. For me it felt like I was watching a medical drama on television – only there were no commercials and the subject matter was too serious. In each moment I felt that success or failure was entirely dependent on the action I took and that one missed moment could be the difference between recovery, disability and death.

We welcomed each potential positive sign (Dad’s first few words, his recognition of a family member, involuntary twitching of his left foot, etc) and disconnected mentally to get through all the bad news (the TPA didn’t work, the stroke expanded again, there is excessive swelling on his brain, he will be disabled). Looking back, I remember each of these and recall that most of the “bad news” seemed false to me. I wasn’t ready to believe that I’d lost my Dad to stroke. I couldn’t fathom yet that the man whose limp left hand I was holding was actually a new person with stark differences from that man I’d called “Dad” for the first 31 years of my life.

When someone you love is in the ICU, the world outside the hospital ceases to exist. This “protective mechanism” shuts your world down and sets blinders up to focus you on just this moment. You process things from second to second and medical test to medical test. You set your watch by when the doctors make rounds and obsess over how you can ensure that you’ll be there to hear all that they have to say. This self imposed narrowing of your world allows you to process what’s happening without distraction, and isolates you from others with whom you’d be unable to interact and couldn’t emotionally handle right then.

When Dad was in the ICU, I felt separated from myself. Within hours my body had oriented to a new “daily routine” and I began thinking of him instead of me. My needs ceased to exist. I was never hungry, never tired, never in need of a break. I hated being told to “go get some food” or “go home for the night and rest” as neither task registered as normal to me. It’s not that I felt obligated to be there 24/7, rather I didn’t understand that there was an alternative. Life outside Dad’s ICU room wasn’t real. Instead, every action and thought was towards helping him. Was he warm enough? Was his paretic left arm well supported? Was he positioned well in the bed? Should I do more passive range of motion on the left arm? Would he like to watch Maryland Basketball – and if so was it on the TV or could I find it on my iPad? The list went on and on. When I ran out of things to do for him, I tried to find things to do for other family members to keep the disconnect. Would Mom like to go to my Aunt’s for a shower? Would my Mom-mom like an update? Should I check on my brother in the waiting room? Anything to keep the hole in my chest from expanding. Anything to keep the emotion buried a little longer.

My advice to anyone experiencing this is to let “ICU tunnel vision” happen. It is what allows you to prepare for the long road ahead and keeps you sane in an insane moment. Without this “numbing effect” that turns off much of your system, checks your emotions and allows you to focus on this moment, you’d fall apart before the true battle even began. This is your “training” and your body needs it. Please – feel no guilt over the separation from your life (work, friends, etc) – it isn’t your fault, you aren’t “dropping the ball” and you don’t have to fight it. ┬áIt will be there waiting for you and you will have to reconnect with it soon enough. Just not today.

Along those lines, if you are the spectator – the friend, the boss or co-worker, the neighbor who saw the ambulance that night – please leave space don’t seek out answers or constant updates. If you want to share your concern, text or email rather than call. I remember screening almost 95% of my calls because I didn’t want to have to talk about it or just didn’t know what to say. I savored the text messages because I could read them for support without having to respond. They were moments of connection without all the complex emotions. When I did chose to respond, I could “copy and paste” a generic summary to each and every text (my apologies to those who received one of my “mass announcement texts” and didn’t know until now). If you want to help, the gestures that meant the most at that moment were the meals family friends cooked and brought to my Aunt’s house (our home base in South Jersey as the stroke happened there and it was near the ICU). Those meals fostered a small sense of normal into the evening after leaving the hospital when all I felt was numb.

“I wanted to write down exactly what I felt but somehow the paper just stayed empty. I stared at the blankness and I knew that had I been able to choose actual words to document that moment, I could not have described it any better.”

Fall down 7 times. Stand up 8.

My name is Angie.  While I’ll be the author of this blog, it’s inspired entirely by my desire to heal my Dad, and in doing so, share information with others that could benefit from his story.

On Christmas Day 2014, my Dad suffered a stroke.  His MCA (middle cerebral artery) became blocked and cut off blood supply to the right half of his brain.  Despite early intervention (we had him at the hospital and on TPA within 36 minutes), his stroke progressed and finalized, leaving him completely paralyzed on the left side of his body.  He could not open his left eye, swallow, speak clearly, move his left arm or leg and had fairly extensive cognitive damage. Much of the sharp, intelligent man that I’d spent 31 years of my life admiring, also couldn’t read, problem solve, recall or think clearly.

There is no single word that effectively describes the despair that stroke causes.  Rather I’d have to say that this experience has added to my vocabulary, forcing me to search out SAT/GRE words that attempt to convey the complex emotions I feel from dawn to dusk and through my dreams/nightmares. While Dad didn’t die, much of the man that I grew up with did.  I was left (barely) standing only to know that the road ahead would be long, emotional, uncertain and painful in every way possible.

Now, please don’t mistake me for a pessimist. I’m generally optimistic and upbeat.  In this case my job left me with the “advantage” of seeing the shape of our potential future, and based on what existed in the current healthcare system to help Dad, my goal (getting my entire Dad back) seemed daunting.  I’m an outpatient physical therapist. I’ve seen (from a healthcare providers perspective) how devastating stroke can be on a life.  What I didn’t know is how naive I actually was.  I couldn’t possibly begin to empathize with what the life of a stroke victim, and the life of their loved ones, actually looked like.  Consider this my apology to every patient (and their family) that I worked to rehab in the past, despite not fully understanding how devastating what you were enduring actually was.

This is blog will serve as documentation of Dad’s recovery and treatment.  I’ll detail each and every intervention we have used, reference literature and provide guidance to those who need help.  But because I feel that this alone isn’t enough to help others, I’ll also describe the things that you won’t find in a textbook or the medical journals.  Those moments that tear you apart, send you over the moon and leave you lost in between.  My intention is to share the personal – and in doing so help others (especially those healthcare workers out there with no personal experience) see what stroke actually looks like.

“I’m too positive to be doubtful.  To optimistic to be fearful. And to determined to be defeated.”