Castaway

We went to Florida recently to visit friends and to see our family. My son’s nanny from when things were at their worst had moved to Miami with her family. On our last few trips, we flew in to see them before heading over to see my parents.

In addition to her understanding our son’s history, they are just good, generous people who are part of our family now. They moved away just over a year ago and have established themselves in their new city. They have a child of their own now that she takes care of and her husband has a good job. We stayed with them at an adorable house they bought not far from the city. They took us to the beach and to different eateries nearby. We got a glimpse of their new life in their new home.

One night while we were down there, my wife started crying. She said she felt like we were stuck in the same life while everyone else’s lives move on. I felt the same way.

Maybe it was the tropical air and the palm trees, but I thought of the Tom Hank’s movie Castaway. In it, the main character survives a plane crash only to be stranded on an island in the middle of the ocean. Years go by until he is eventually rescued. When he returns to civilization, he finds that the world has moved on without him. Technology has advanced. Friends have moved on with their own lives.

The world is moving on without us. Our lives may be slightly better or slightly worse in some areas compared to previous years. I have a new job and we have a new house but, as a whole, it feels like the same life. We’re still struggling with a sick kid, with seizures, with behavior issues. We’re still dealing with school, and doctors, and appointments, and therapies. We’re still making food for the ketogenic diet and picking up prescriptions at the pharmacy.

Maybe it feels this way because we’re still in the middle of it. It’s hard to feel like you’ve moved on when you aren’t able to let go of anything from the past. When everything is present, there is no moving on. When you wake up and have the same day over and over again, you’re like the character in the movie, stranded on an island while the rest of the world moves on without you.

The Macro and The Micro

There is a difference between the macro and the micro. The macro is the big picture. It’s the view of our life from the outside. It’s filled with generalizations. The micro is our life on the inside. It’s the day to day, minute by minute decisions and occurrences that are missed when you only see the big picture.

The macro is the view from our social media feed. It’s the images of Hawaii and hockey games, Globetrotters, and Florida. It’s the smiles and the perception of a normal family living a normal life.

The micro is the structure and planning that goes into every day that allows those experiences to happen. It’s the fallout after a game when he is too tired to regulate his behavior, or the next day when he is so tired that his routine is off and we have to start over from scratch.

The macro is seeing him leave the house with a backpack on his back heading to school. It’s math, and reading, and recess and lunch. It’s a science project or a school play.

The micro is how difficult school is for him and how he only goes for a few hours a week. It’s seeing the extra hours he puts in every day doing schoolwork and how hard he has to work trying to keep up with his peers. It’s falling behind socially and trying to make up for it in other ways. It’s 504 and IEP meetings, and lawyers to navigate a system that was not designed to support his needs.

The macro is a good job with the cool job title and working for a huge corporation. It’s the view from the tower.

The micro is the stress of a difficult job and wanting to succeed there while so much is happening at home. It’s traveling for work and being thousands of miles away, worried that I will be needed. It’s the pressure to constantly perform to keep it all together and an inability to turn it off. It’s the strain that puts on relationships. It’s the fear of it all tumbling down and losing it all.

The macro is the family living in the city, hip and trendy in a condo in the sky.

The micro is why. It’s living in the city to be closer to the hospital and the endless appointments. It’s needing to be closer to a public school that has to take him, whether they can support his needs or not. It’s removing as much maintenance from our lives so that we can fill the moments between appointments with joy instead of chores.

The macro is a kind, generous, happy kid that makes the world around him smile.

The micro is the lonely, sad, tired kid that struggles every day. It’s the kid that takes medicine three times a day that causes depression and behavior issues. It’s the kid that doesn’t have many friends and struggles to learn how to interact with the ones he does have. It’s three years on an impossible diet. It’s having things that he loves taken away because they were meant for a different life. It’s trying to figure out what is meant for this life.

The world around us is filled with these different perspectives. It’s a choice to see the world from above or to get down on our hands and knees to inspect what lies below the surface. Macro is the aggregate. Micro is the individual. Which one you see depends on where you are and which lens you choose to use to see the world.

Seizure Detection And Prediction

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31, 2018. Follow along and add comments to posts that inspire you!

As the parent of a child with epilepsy, I rarely sleep through the night. Instead, I periodically wake to check in on my son. We use a wireless camera that has an app that we run on an iPad that I prop up beside our bed. I can see in to his room, even at night, and hear any activity or seizures. For the most part, it’s a good setup. But occasionally a wireless issue will cause the connection to drop. I’ll wake up facing a dark screen, wondering if I missed a seizure as I fumble in the dark to restart the app.

That scenario repeats a few times a month, which is why the news that the FDA approved the Empatica Embrace as a medical device was so exciting. The Embrace is a wearable device that detects generalized tonic-clonic seizures and sends an alert to caregivers. Devices like the Embrace will provide a piece of mind to many people with seizures and those that care for them.

Unfortunately for us, we haven’t yet found a device that can reliably detect my son’s seizures. His seizures are short and without much movement, making them harder to detect. Generally, the longer a seizure is and the more activity it generates, the more likely it will be detected. But with new sensors and smarter algorithms, these devices will continue to improve. They’ll have a higher sensitivity to detect shorter and more subtle seizures. Instead of relying on my own eyes and ears to catch every seizure, I’m hopeful that these devices will work for my son someday, too.

Since the theme this week is technology and epilepsy, I thought I would spend some time talking about the magic behind these devices.

Detection versus Prediction

Detection

First, I wanted to differentiate between detection and prediction. Devices like the Embrace focus on seizure detection. Detection figures out when a seizure is happening. The device monitors activity from embedded sensors and runs it through an algorithm. The algorithm has been trained to look for patterns that look like seizure activity. Once it is confident enough that a seizure is occurring, it will send out an alert.

Prediction

Seizure prediction tries to figure out when a seizure is likely to happen. Some people have auras or other cues that let them know that a seizure is coming. Imagine a device that could provide that same warning to everyone. This is a hard but achievable goal. The clues may be more subtle and harder to see. We may need more data or new sensors, but we’re well on our way to developing them. When we figure it out, the warning it provides cold allow a person about to have a seizure to go sit down or get to a safe area. It could alert caregivers ahead of time so that they provide help before or during the seizure.

Training an Algorithm

Both seizure detection and seizure prediction use much of the same data but for different goals. The techniques used to learn the algorithm are similar, too. Data is collected from a group of people wearing different sensors. The data includes both seizure and non-seizure activity and it’s fed in to a computer with a label such as “seizure” or ”no seizure.” The computer learns the difference between the two and creates a model that can be used to look at new data to classify it as a “seizure” or ”not a seizure.” The more examples the algorithm sees, the better it gets at identifying the common traits in the data that are associated with a seizure.

The process is similar to teaching an algorithm to identify a cat. You feed the system a bunch of examples of cats and it identifies that a cat has two eyes, to ears, a nose, and whiskers. It generalizes traits using a technique called induction. Once it generalizes the traits, it can use them to identify a cat that it has never seen before using those traits. This is called deduction.

The same approach happens with seizures. People and seizures are different. If we trained a model to look for a specific heart rate, it wouldn’t be useful because that would differ for everyone. Instead, we train a model to associate common changes that happen during a seizure. Then, when it sees the data coming in from sensors in a device, it looks for those similar markers to decide how to classify the data.

No Algorithm Is Perfect

As in the cat example, there are an infinite number of combinations of data points necessary to always get it right. We can’t practically train a model by showing it every angle of every cat that might exist. And we can’t give it data reflecting every possible seizure for every person. But we don’t have to. The magic of these algorithms is that they can do a pretty good job using subsets of the data. But that does mean they can make mistakes.

There are two types of mistakes that are the most common: false positive and false negative. In the case of seizure detection, a false positive is when the algorithm said there was a seizure but there wasn’t. A false negative would be when the algorithm didn’t think there was a seizure but there was.

These two error types present different challenges. In seizure detection, a false positive means that a caregiver might have been alerted. This can be annoying, especially if it happens too much, like The Boy Who Cried Wolf. Too many false positives means people may turn off the notification feature or stop wearing the device altogether.

In seizure detection, the false negative is a much more severe problem because it means a seizure occured but the algorithm missed it. That means no notification was sent to alert a caregiver. If that is the primary purpose for the device then it can’t be relied on and won’t be used.

Making Things Better

The good news is that algorithms can learn from their mistakes and get better. We can use the times it was right and wrong to retrain the algorithm so that it can get better. That’s what Google, Facebook, and every other company that uses data does to make their products better. A popular concept in the world of machine learning and AI products is the Virtuous Circle of AI.

We create products and give them to customers. The customers use the product and generate more data. The data is used to make the product better by making the algorithms better or adding new features. This is how Alexa gets better at understanding what you’re asking for, how Google gives you better search results, and how music and movie recommendations today are many times more accurate than even a few years ago. In the same way, as more devices like the Embrace find their way on to the market and more people use them, these products will use the data to get better, too.

NEXT UP: Be sure to check out the next post tomorrow by Joe Stevenson at epilepticman.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

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