[Note: A cornerstone of the Health for America at MedStar Health fellowship is the simulation experience. Given the many dimensions of stroke, the 2016-17 fellows participated in a range of stroke simulations. You can read about their acute care experience here. Over the next two weeks, the fellows will share their discoveries and insights from their other simulations!]
I am 23, going on 65. I’m living with anxiety and depression, and my high blood pressure is well into the hypertensive range. Over the years, I’ve developed type 2 diabetes and have to watch my blood sugar levels.
A few months ago, I experienced an ischemic stroke that has left the right side of my body weak, making activities of daily living much more difficult for me than they were before my stroke. My doctor has told me that unless I keep my blood sugar levels and blood pressure under control, I’m at risk for another stroke. This time, she says, I won’t get off so easy. I might not be able to talk or eat independently anymore, she says.
I’m trying my best, keeping my salt and carbohydrate intake low, trying to monitor my blood pressure and blood glucose levels regularly, taking my medications, and walking a little more often than I used to. I have to tell you, it’s hard! I often find myself forgetting to do each of these steps, but I do my best. The weakness doesn’t make it easier, and I find myself feeling depressed often, and this sure hinders my motivation to stick to better habits.
My name is Katia, and this is my simulation story.
For two and half weeks, King, Stephanie, Mike, and I tried to catch a glimpse of what it might be like to live life after experiencing stroke. We attempted to recreate both physical disabilities and lifestyle modification challenges. I assumed the persona of a 65 year-old woman on Medicare, who experienced a left-hemisphere ischemic attack that rendered me hemiparetic - experiencing weakness on one side side of my body (in my case, the right side). From wearing an orthotic ankle boot, 2 lb ankle and wrist weights, a glove on my hand, and walking with a cane in order to simulate one-sided weakness, to monitoring my blood pressure, blood glucose levels, and sodium/carbohydrate intake to simulate simulation second stroke risk reduction, I’ve learned that making (and sticking!) to new, healthier habits is incredibly difficult.
At first, I felt like I was failing the simulation horribly. How could I have forgotten to measure my blood glucose level two days in a row?! It was hard to be consistent with my blood pressure measurements, my blood pressure cuff coming with me in my purse wherever I went. I did my best to keep track of my dietary intake using the MyFitnessPal app, but this too required me to remember and pause to diligently input the dietary information from each meal. There were also my medications - 12 pills to be taken daily (I used vitamins, nuts, and candy “pills” for my simulation).
Between monitoring blood pressure and blood sugar, trying to restrict sodium and carbohydrate intake, taking all of my medications, and trying to be less sedentary, I began to empathize more deeply with how hard it is to ask someone to adopt and maintain all of these new practices. This might be somewhat like making a New Year’s resolution to begin exercising, but with stroke, the price of not keeping up with these new “resolutions” is drastically steep - another stroke that might leave you more impaired, and more dependent on others for care and assistance.
Speaking to King about our simulation experiences, I realized that I wasn’t failing at the simulation. Failing to be diligent about each practice and slipping up in maintaining my new habits was exactly the point. With this new perspective, I looked at the simulation with new eyes: if I forgot to measure my blood pressure and measure my blood sugar, chances are there might be a stroke survivor who faces the same adherence challenges that I did.
The simulation experience was humbling. I can imagine that while keeping to my new health regimen was difficult for me, the challenges I felt represented only a fragment of what it might feel like for someone who has experienced a stroke. While I could partially simulate what it might be like to have one-sided weakness and what it might be like to adhere to a medication schedule, I could not truly and fully understand the potential impact on my psychological health and well-being to go through my new life with these new layers of complexity.
In our exploration phase, we had identified secondary prevention - prevention aimed at preventing a second stroke - as a key window of opportunity for us to focus on when creating innovation in stroke care. Many of the providers we had spoken with had pointed out to us that compliance with medications and lifestyle modifications were both so important, and yet so difficult for stroke survivors to engage with. Grounded in this simulation experience, I now understand that innovating in this sphere will be neither easy, nor straightforward. However, I walk into the next phase of the fellowship with one clear and deep impression: empathy is key for creating the positive change we seek to bring.