Measuring Progress in Recovery After Stroke

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“Recovery after stroke is best measured in months and years, not in days or weeks,” the neurosurgeon at Johns Hopkins Hospital said to me.

As he stood in the doorway of my hospital room sharing that advice, I imagine I rolled my eyes and thought something along the lines of “Thanks for the cliche advice, doc.”

But three years later, as I just passed the third anniversary of my stroke, I was reminded of that comment because it turned out to be some of the best advice I received after stroke.

Considering the fluctuations in how you can feel day-to-day after a stroke, taking a step back to look at long-term progress is a much more appropriate way to think about making progress.

Significant Changes Can Come Years After Stroke

Although the one-year mark of stroke recovery is built up as this moment when stroke survivors will be “fully recovered,” I’ve been surprised at how I continue to feel and see noticeable differences now three years post-stroke.

I recently took a trip to New Orleans where I drove three hours to the airport and then hopped on a five-hour connecting flight. All in all, it was about 12 hours of travel for each day there and back.

Just a year earlier, traveling to New Orleans solo would have been unthinkable. At that time, I was still splitting driving duties with a friend for a weekend beach trip because driving 30 to 45 minutes straight was a challenge.

In his book Stronger After Stroke, Peter Levine compares recovery after stroke to the stock market in that long-term trends are the more valuable measurement compared to short-term information.

“Recovery should be judged by what happens over an extended arc of time,” Levine writes.

Recovery should be judged by what happens over an extended arc of time.

Peter Levine

Stroke Recovery Timelines

After a stroke, there is no uniform stroke recovery timeline.

Just as they say no two strokes are the same, no two stroke recoveries are alike.

Everyone progresses at their own pace toward goals unique to their situation.

Shortly after stroke, it’s easy to wonder if how you feel today is how it will always be and if you’ll have to continue modifying some activities forever.

However, it can also be motivating to think about where you’ll be in another six months to a year since your current deficits can continue to improve.

Why it’s Important to Measure Progress After Stroke

I only attended one semester of business school years ago, but that was enough for me to learn the old adage “What gets measured gets improved.”

Once I returned home from inpatient rehab, I made it a point to measure my speed to complete certain tasks. I would time myself using chopsticks to pick up various items or how long it took me to complete a typing test.

To this day, I still regularly take online typing tests and compare my scores to years past to see how my stroke-affected left hand is improving.

However, one of the biggest mistakes I’ve made in the past three years was not taking enough photos or videos of my abilities at the time.

I don’t have videos of myself limping around the neighborhood, holding my mother’s hand to step up on a curb, or working with a therapist to stand up out of bed.

At those times, I was too embarrassed to have anyone see my current state, but in hindsight, I wish I had videos of those early moments to see my progress now years later.

How to Measure Progress in Stroke Recovery

In addition to tracking your speed to complete tasks and recording video progress, Peter Levine suggests the following three ideas to measure progress in recovery after stroke:

1. Measuring distance traveled
2. Measuring how long you can do something
3. Counting the repetitions completed

While it may be uncomfortable at times, documenting your stroke recovery through photos and videos can be incredibly valuable.

One day down the road, you might look back and be impressed with how far you’ve come rather than being like me, who only wishes they had that opportunity.