Author: Dave

Trends In Wearables For Seizure Detection And Prediction

This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Today kicks off week 3 of the Epilepsy Blog Relay when the theme changes to Tech and Innovation in Epilepsy. As a technologist and father of a child with epilepsy, this week represents the intersection of my two worlds. I am excited to be writing this week because of the promise of technology in managing epilepsy.

The Story So Far…

More than a year ago, I found a crowdfunding campaign for a wearable device that could detect seizures. At the time, we were struggling with detecting and recording my son’s seizures. It was difficult because he had many types of seizures and we knew from EEGs that we weren’t catching every one. The seizure devices already on the market didn’t work for him. Most used accelerometers and gyroscopes to capture exaggerated arm movements or falls. But his seizures often only created subtle body movements that were not detected. This new device included other seizure markers, such as galvanic skin response. I hoped the new sensors would make the difference. Since the device showed promise, I backed it and then anxiously awaited its release.

After a long delay, the device finally shipped. When we received it, I strapped it to my son’s wrist and hoped. The next night, my son had his usual handful of seizures but the device didn’t detect any of them. Initially, I thought I had configured the device wrong or that it lost connectivity to my phone. But after a few weeks of seizures with no detection, we stopped wearing the device and put it on the shelf.

Our story is one of many similar stories of unrealized expectations. But this post is not one of failure and despair but one of hope. While the device didn’t work for us, it does work for some people. Moreover, better methods of seizure detection continue to be developed. These techniques are being included in the growing number of wearable devices on the market. Soon, we’ll have clothing and accessories capturing biometric markers that will be able to detect seizures more reliably. We’ll have data captured that we’ll be able to use to predict when a seizure will occur. And this will happen in the very near future.

Devices, Data, and Machine Learning

There are three components necessary to create a device capable of detecting and predicting seizures: devices, data, and machine learning.

Devices

The devices represent the things that are collecting data. Today, we have wearables like watches and clothing that have sensors in them. These sensors measure some attribute such as heart rate, steps, or stress level. The trend towards smaller, cheaper, and more energy-efficient sensors will continue. New sensors to measure new markers will be created. Manufacturers will be putting sensors in nearly everything they create. The result will be a wealth of information streaming from us at all times.

Data

With the proliferation of sensors, the result will be a tsunami of data. Every measurement and data point we can collect will be available in near-real time. We’ll have access to data that required equipment at a hospital to measure. We’ll also be able to correlate that data with information from the world around us. The outside temperature, what our thermostat is set to, what we ate, how much television we watched. The more things we connect and make available, the larger the pool of data we will have with which to swim in and find answers.

Machine Learning

The component that I am most excited about is machine learning. Now that we have all of this data, what do we do with it? It’s too much data coming in too fast for a human to make sense out of. So we use machine learning to try to make sense out of it for us. We can train a system using real data so that, over time, it can use what it learned to predict better than a human can. It can find patterns in data that are invisible to us and make connections that we can’t. It can figure out when the data is aligning in a way that previously resulted in a seizure and notify us. It can help adjust our behavior in a way that reduces our risk of a seizure. And it will never stop learning and will continue to make more accurate predictions.

As depicted in the image about, machine learning isn’t the final stop. Instead, we will use the algorithms we develop to feed back into the devices. We’ll create new sensors to fill in our gaps in data. We’ll push the intelligence further down to the device to allow it to make smarter decisions closer to the person wearing it. The updates to the devices will result in more data, or better, more refined and reliable data. That, in turn, will make our predictions better. The cycle will continue to a point where many devices will be able to detect and predict seizures. It won’t be the job of one specialized device but, instead, a collaboration of things we wear everyday.

Challenges

There are challenges ahead. Securing the data and privacy are two top concerns. Battery life and powering the devices and sensors follow closely behind. These are huge problems and concerns. But just as there are trends impacting the components above, these challenges are not unique to wearables. Advancements in encryption and identify management will make their way into wearables. New battery and wireless charging technologies will keep our devices powered longer and without us thinking about it. A rising tide lifts all boats, and wearables will benefit from much of the same innovations as other technologies.

Conclusion

Even though our current experience with wearable devices to predict seizures has been disappointing, I am still optimistic. The trends in devices, data, and machine learning will continue to result in more reliable detection and prediction of seizures. In the near future, we’ll have these capabilities in everyday wearables, not just in specialized devices. The result will be a dramatic increase in peace of mind and in overall quality of life.

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

Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.

June 15, 2017
Early Mornings And Coffee Spoons

It’s still dark outside, but I’m at my usual station, too early in the morning, writing. My son had a short seizure that woke me up. My wheels started turning and I couldn’t turn them off. The upside of him sleeping in our bed is that I don’t have to lose sleep wondering if the monitor is working. The downside is that his seizures are right in front of me, and its impossible to go back to sleep once they are over.

At some point, he isn’t going to be able to sleep with us. He’ll be too old and too big to fit in our bed. If there were ever a reason to wish him to remain seven forever, that might be near the top of my list. Coming in a close second is the fear that his condition is going to get worse as he gets older. Our doctor is concerned about what happens at puberty. It’s another stage of brain development where seizures can change or be more severe. I thought it was impossible for things to get worse. Apparently, they can.

Today, he’s only had epilepsy for a fraction of his existence, but by then, he’ll have had epilepsy for most of his life. We’ll long have lost count of seizures, and meds, and have long forgotten about the time before this began. It will be all we know and all he can remember.

This is what happens to my unrested brain so early in the morning. It gets pulled into the stream and dragged wherever the current takes it, and there is no safe shore for my thoughts to land. The present is filled with seizures, medicine, side effects, and, presently, a lack of sleep. The future has too much uncertainty, doubt, and fear. The past is too painful. Remembering a time without epilepsy is getting harder and, if I try, it makes me sad. What we saw for our lives back then was not this life.

My coffee sitting on the window sill does little to pull my unrested brain back to happier thoughts. But as I stare out onto the dark street, I can at least resist the urge to measure our lives with coffee spoons, in careful doses or as an observer. There is so much left to our journey, so much active living to do and so much of it is unknown that dwelling in any one place is fruitless toil.

Instead of focusing on a when, I try to focus on my what. My what is my family that is together and, in many ways, stronger than ever. Most days are hard, but there is always something to be grateful for. We have a nightly routine where we call out something that we’re grateful for from our day. Even if we skip the rest of our routine, that one gets done. Because those things for which I am grateful are worth measuring, and I want to focus on adding as many of them as I can to this life.

On that note, I’m going to sneak back into bed and lay next to my family. I’m going to do everything that I can to settle my mind and be present in that feeling of being together.

And, maybe, I’ll actually sleep.

June 6, 2017
It Looks Like Rain

When my son was at his worst, with relentless seizures and medicine flooding his body, he wasn’t our boy. He was uncontrollable and so, so angry. He would have fits for hours where he would try to hurt us and say terrible things. We’d spend those hours holding him, telling him that we love him, and waiting for the storm to pass.

There were long stretches of weeks where we would only see glimmers of the boy that he was, like a break in the clouds. But, inevitably, the clouds would expand, find each other, and hide the light behind them.

After too many months, the enormous storm that ravaged our lives started to break up. The seizures were more under control and we were able to reduce his medications to only a handful. We sought counseling for dealing with his condition and with each other. With a lot of hard work, we had more breaks in the clouds, more times where we saw the light from our boy shining on our lives.

We spent a lot of time basking in that light. We were starved for it after so much time without it. There were still rumbles in the distance, a seizure or an outburst, that made the hair on our necks stand up. Occasionally, a storm would pop up, but it was usually brief and not as violent. Still, we remained on guard.

Lately, the sound of thunder is getting louder.The hairs on my neck are standing up again. We’re seeing the tell-tale signs of a storm. There are times when he can’t control his body or regulate his emotions. There are days when he’s not there and when he’s not processing and not aware. There are more times when he gets angry and pushes everyone away. We’re adjusting his medicine again and these signs act as our barometer that tells us when the dose is too high.

I know we have to adjust his medicine to keep the seizures in check, but I also know what that brings with it. I can see the clouds forming. It looks like rain.

May 30, 2017
Keeping The Door Open

If you believed the headlines, you might have thought that CBD was a miracle cure for epilepsy. After so many drugs failed to control my son’s seizures or burdened him with terrible side effects, I felt like we needed that miracle. But, in the end, CBD, like many other medicines, did not help to control his seizures.

This post isn’t about CBD. It isn’t about Keppra. It isn’t about dilantin, or topamax, or vimpat, or triliptol, or tegratol. It isn’t about any of them in particular but, in a way, it is about all of them. It’s about feeling like a door closes a bit more every time we stop another medication. There is still light on the other side because I can see it splashing through the opening onto the floor. But the beam is getting narrower. And no matter how I angle my head, I can’t actually see the source of the light. I have to trust that it is there.

I’m frustrated that another thing that has worked for others didn’t work for us. I hoped it would live up to the hype and that we would be one of the success stories. I want desperately for something to work for my son. As hopeful as I am that he will wake up one day seizure-free, I’m not greedy. I’d settle for a magic pill that would allow us to stop his other medication and free him from their side effects. A pill that would let him stop the ketogenic diet so that he could have a slice of pizza or a piece of candy.

The side effects. The ataxia. The attention. The unbalance. The learning difficulties. The feeling of being different. The loss of control of his mind and body. The lack of freedom. An uncertain future. I want that magic pill to take away these things, too.

But there is no magic pill. As every parent of a child with epilepsy knows, some things work for some people but not for others. We happen to be in the unlucky camp of people for whom most things don’t work at all.

The door hasn’t closed, though. I won’t let it. I jammed my foot between the door and the frame so that it can’t close. I’ve got one hand gripped on to the handle and the other with a firm grasp on the door, and I’m pulling as hard as I can.

I won’t let that door close.

There is too much at stake. When there is light, there is hope, and there is so much to be hopeful for.

I won’t let that door close.

If I have to, I’ll rip it right off its hinges.

May 23, 2017
Leading With Love

Sometimes I look at my son and I see a tall blade of grass, swaying in the breeze. His legs appears rooted on the ground, but his body moves and bends as if it is being pushed by an invisible force. Or a corn stalk that is too thin to support the ear that is is carrying, bobbing in no particular direction but down. It seems an exhausting tasks to constantly keep from falling over.

When he moves, I see a puppet whose strings sometimes get twisted. The extension of his limbs or the gate of his stride are not quite right, and he sometimes tumbles to the ground. We do our best to pull him up and untangle his knotted strings, but each time he falls, my heart aches.

I wonder if, when he does fall, when he’s lying on the ground, if that’s when he feels the most stable. Like in my younger days after I had too much to drink. When I wanted to lay on the bed and prayed for the world to stop spinning around me. My prayers were rarely answered, but at least I felt like there was nowhere further to fall. I could close my eyes and feel the world spread out below me and holding me so that my body could release all its tension. Only, he shouldn’t be old enough to know what that feels like.

When he falls to the ground, I get angy and frustrated and sad. I look at him as that blade of grass, or stalk of corn, or sailor, or puppet. I can’t help myself but wonder if he wants to stay down for an extra second to let his body not worry about balance. But when I do, when he looks at me, I worry that he will see those expressions on my face directed at him. That he’ll think that I am angry and frustrated at him, or that he’ll see me sad and think that it is because of him. It’s a heavy burden to think that you are the cause of such powerful emotions in another person. Of course, he’s not. My anger, my frustration, and my sadness are not because of him, but because of what is happening to him. But what else could he think when I look at him the way I do? He shouldn’t be old enough to know what that feels like, either.

The cruelest thing that epilepsy continues to do is to try to make my son feel less than he is. Less than an amazing boy. Less than the best son. Less than a gift. Less than a miracle. It feels as if it is using me to do its dirty work, to project those feelings on my son through my worry and frustration. I catch myself doing it, but usually after the message has been delivered. It’s a terrible feeling to worry about what your child thinks you think when you look at him. Because regardless of what is visible on the surface, hidden underneath is always love.

I wish my instict was to lead with love. I want so much for that to be what he sees when I’m looking at him instead of the temporary emotions caused by a symptom of his condition. I don’t want him to have to remember that I also love him, I want that to be where he goes first. Because the pain and sadness at what his condition is doing to him is amplified by that love. Because loving him is where I am, first and always.

May 16, 2017