Embrace Watch – A Month Long Journey

Last month I did a one week review about the Embrace Watch by Empatica. There were some pros and some cons, now I am here to give you a one month update on how I feel about the Embrace Watch. In this time frame, updates were made on behalf of Empatica and I got a better feel for the watch. If you are still on the fence, take a quick read to help you form an opinion before making the plunge. Click here to read my other review as well if you want more background on the watch. Enjoy! And just for reference, I am not affiliated or sponsored by Empatica – everything that is stated is based on my personal opinion and experience.

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One Month Review – The Pros

As time went on, the watch became far more accurate with my sleep and activity cycles. It has not confused the two or doubled them together, as this was an issue I had within the first week. On May 17th, I had an episode of a questionable seizure, I woke up not breathing which occurs during my seizures at times. Now the watch cannot pick up seizure activity for me because I am currently pregnant, but it did pick up that instance. It recorded it as an interruption and paralleled the same time a woke up during the night gasping for air. No, I do not have sleep apnea, never had pregnancy induced sleep apnea, never had any issues of this. I was quite pleased and excited it recorded this activity, just wish it could of recorded any convulsions. I will say that day, my body reacted as it would for a typical nocturnal seizure – so I am leaning more towards that being the case.

Another amazing accomplishment, I got the Mate App to finally work on my LTE network. It was the most frustrating thing ever to not have access if WiFi connection was not established. Granted I still need the Wifi to be on, even though it is not connected, I was finally able to access the Mate App.

I also have not had any issues with the charger, thankfully. Everything in that department seems to be in working order. Also, with the new update – GPS location tracking is now a thing! This was great news and I was super excited about this since I am out cold for what feels like forever. This will allow my family to locate me and help get assistance to me if any was to occur when I was alone or at school/work.

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The Cons

A common issue that has been reported through the community is issues with Bluetooth. I had not experienced an issue with Bluetooth at all prior to May 24th – when I went to Connecticut and stood at a more rural location than where I live and work. The Bluetooth range was not the same as it was at my house, it disconnected and reconnected more frequently, and seemed to struggle more with transferring information. I thought this was strange, so I made a point to carry my phone with me at all times – still had issues from time to time. At first, I thought perhaps it was my phone, but when I returned home, it was fine. I am curious on where the other people are located who have issues with the Bluetooth – location may play a role in this.

If you have been following Empatica’s blogs, you may notice the service charge fee will be going into effect soon. Now, you are free to test the services yourself, but when your trial is done – here is the price breakdown:

  •                 Lite: $9.90/month -Alert one contact when a seizure is detected
  •                 Standard: $19.90/month – Alert 3 contacts, also notify them by text as well as phone call. In addition, they will Receive the GPS location. You will be able to also have access to the “Rest Mode” – which helps the sensitivity of detecting seizures.
  •                 Plus: $44.90/month – Alert unlimited amount of contacts, alert by text with GPS as well as having access to “Rest Mode.”  Includes summarized monthly reports capturing your seizures, rest, and physical activity.

Now logging of seizures, activity, and sleep on the Mate App will still be free – but the main purpose of why so many bought into the watch is not. Now, my personal issue here is the overall price for a product that is still quite honestly – needs some more work. The price of the watch is already steep, now you are going to ask for payment when it needs more fine tuning. I cannot get myself past that.

Of course, if you are a parent/caregiver paying for this – sure it may be worth it to you. Now, if you are more in my position and must pay for the services yourself and can only work a limited amount of hours due to Epilepsy – it can get pricey after a while. My whole purpose of buying this watch is now tacked on with a monthly fee. I do not even know if this watch will even truly pick up my seizures yet. If you go into the community Facebook page – some people who have tonic-clonic seizures do get picked up, some do not. There are still a lot of issues with false reporting/notifications. I personally feel they should have waited a bit longer before imposing this, but this is their decision and to me – a huge turn off.

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Final Thoughts for Month One

As much as I do enjoy and love the watch, I do not think it is worth or up to par to have a subscription fee just yet. Will it get there one day? Definitely, but I do not feel it is there yet. Again, this is just my opinion. I strongly feel that they should allow ONE contact, at the very least, to be notified in case of a seizure – to me that was a huge selling point.

Now to be fair, there is another watch by Smart Monitor, called SmartWatch that also detects tonic-clonic seizures. This also requires a fee for the watch as well as a subscription fee that is similar to the Embrace Watch when it comes to contact. Now, they do not give you a break down on their site upfront, but from a UK site – for a single contact to be notified, it will cost around 15 EUR which is $16.90 USD. So Embrace is a cheaper option in comparison, but I cannot comment on which has a better ability and accuracy level.

For me personally, at this moment of time, the watch is of no use to me. I cannot fully use it till after pregnancy and then between school, work, and a newborn – I will have to manage money for a monthly fee on something that is still a work in progress and may not even work for me. So, I have decided to find this watch a new home. There are people out there who could use it now and use it more so than myself. While yes, I am terrified of what is to come after childbirth and going through seizures without warning…I am not sure if this watch will actually be able to help. I sincerely hope someone else can reap the benefits and have a sense of security.

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Are you unhappy about these changes?

A petition has been started by Rachel C. – a fellow Embrace user –  to use our collective voice in hopes to see changes be made about the new subscription fee. I ask you to take time to consider signing this petition, even if you do not decide to purchase this device. If you are just as unhappy about these changes as us, please sign and share! Just click the photo below

 

Embrace Watch by Empatica – One Week Review

Many of you may have heard of wearable technology to aid those who suffer from Epilepsy and Seizure disorders. While there are a few types out there, I have done some research and decided to settle on the Embrace Watch by Empatica. As some of you may know, I suffer from tonic-clonic, nocturnal, and myoclonic seizures that come without warning. My tonic-clonics can last quite a bit of time and leave me disoriented for upwards to an hour. Being a mother, student, and healthcare worker – I felt this would be my best option.

The Embrace Watch is a smart watch that monitors the nervous system, sleep cycles and quality of sleep, and activity levels. Best part is that it can sense when a seizure occurs when convulsions last over 10 seconds, mark it, and notify a caregiver(s) of your choice. If the watch so happens to miss a seizure or you have one of a non-convulsing type, you can mark when the seizure occurred in your dairy and see what was going on around that time frame. While yes, this is mainly aimed at tonic-clonic/grand mal seizures, it can serve some benefits to other types. The watch includes an LED clock as well that uses a light system to determine the time. It connects to a phone by Bluetooth and is said to transmit data by Wifi or cellular data services. This device charges with the use of a USB port connected to the watches docking station.

How exactly does the watch sense the seizures/activity/sleep? By using sensors which include electrodermal activity sensor, peripheral temperature sensor, 3-axis accelerometer, and gyroscope. This technology is still relatively “new” for the watch and consumer use, bare that in mind. It requires the use of two apps: the Alert App and the Mate App. Do note that if you are pregnant, you cannot use the alert function – it does not specify as to why exactly, but I imagine our body already has a lot going on and is still considered to be in trail mode. The Mate App is still functional for use and the Alert App will still track your data to transmit it over.

 

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One Week Review

When I was researching the watch, I noticed a lot of reviews were quite outdated or did not offer any type of follow up. So, here I am doing a one week review and fully anticipate doing a one month review. Since I already invested into the watch for better or for worse, I do another review as well once I meet my little one. Let us start off with the positives.

Pros

I was amazed with how quick shipping was. From time of payment to actual delivery was a week – which is great. Do keep in mind I do live in the United States and so happen to live within the same state; I might have cheated a little. Although, they do a wonderful job of updating you along the way of your shipping status and send you emails so you can learn more about the watch as you wait. I thought this was an awesome idea and kept you anticipating the arrival.

Once the Embrace Watch arrived, I was very pleased upon opening it. Came in a very sturdy package, the watch was beautiful and slick, you would never guess off hand it was used as a medical device (note: not officially calssified as a medical device yet though. Still in trial phases). Upon wearing the watch, I felt that it was quite comfortable – the strap is of a stretchy fabric material that can expand quite big and shrink quite small (good for my child-like wrists).  Charging the watch was quite simple – pinch open the port, place the watch in the port with hearts facing the same direction, connect the USB cable to a USB port (I used my laptop). Initial charging did take a bit – although, my computer decided to not function so I cannot give you an accurate time lapse; but I would expect this to occur. Charging afterwards did not take nearly as long – but I will get into that more later. It connected to blue tooth fine, I had decided I would run the watch off cellular data initially, and the phone I am using is an Iphone 6 with IOS 10.3.1.

Both the Alert App and Mate App was easy to fine, downloaded fine, and connected to the watch fine – very easy set-up process. My Alert App did need a Firm Ware update, so please check into that after downloading.  Also, if there are any issues, there is a wonderful and pleasant Facebook group for Embrace Watch Owners – they are extremely helpful and nice and one person I could never thank enough.

I would also like to add; their customer support has been absolutely lovely and do get back to you in a kind and effective manner. I feel that they truly do care and are trying their best. It is not automated in tone like most places.

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The Cons with Daily updates

May 7th – After the arrival

So, first things first – the watch did not record and has still not put in information for May 6th, when I started wearing the watch. I chalked this up to maybe I did not wear it enough within 24 hours. I turned to the Facebook group and everyone said it should have showed – still nothing. Well, that is just a minor setback, was not overly surprised. When I decided to charge my battery – yes it needs to be charged daily, this to me is understandable and easy to work around – it was in the teens and once the watch and Alert App indicated it was full charged, I put watch back on. To my surprise, I went to check the Alert App again it dropped to 89%…errm. It still lasted quite a while at least, I just did not understand as to why the sudden drop.

Now I went to recheck my Mate App to see today’s data (remember I have been wearing it since the day before) and nothing came up. I actually could not even get into the Mate app at times. Well, okay, perhaps it was something I was doing wrong or connection issue. I followed what the site said to do: uninstall and reinstall the app, logged in and out of the app, restarted my phone, and I have not lost any Bluetooth connectivity, but deiced to reconnect that too. Nothing worked. The Alert App did not have any pending downloads. I decided to go somewhere with Wifi, as my last hope, and see if that helped – and it sure did. All my data from May 7th showed, although as days progressed – I could not use my cellular data/LTE network AT ALL to transmit data or access the Mate App. I ended up having to turn my partner’s cellphone into a hotspot. When I cannot access Wifi, I will not have data showing or access to the Mate App. Luckily, data does store and save on the watch until I can access Wifi.

May 8th

The watch started recording rest times that did not occur. I can tell you for a fact, because I was driving during this time, I was awake from 7:00-8:00 am – it even recorded me walking to my car as activity that same morning during the rest time. I am assuming if you do not move enough, it registers as rest. So now I am questioning the actual accuracy of the watch. It is accurate most of the time – I will not take away from that, but this was quite confusing. Later that day LED clock COMPLETELY stopped working. I attempted to clean the watch according to the website – remind you I only had the watch for 3 days, had not spilt anything, got it wet, dirty, banged it, or dropped it. This was then met by the watch not charging now. I followed the directions and did so the same way as I had done the last two days – nothing. LED clock came on briefly when I tried getting it to charge, but nothing afterwards. After some finagling and frustration, the watch decided to charge – this time only up until 60% before it completely stopped again.

May 10th

Still having issues with false reading rest/sleep. I felt like I made sure to keep that wrist and arm active every now and then, it still recorded it as sleep. I can see this becoming an issue with school and reading; on the 9th it did record a period of time when I was reading as sleep. Today the LED clock started working again (huzzah)! I am curious if it was a temporary glitch in the system. Also, my charger actually worked last night too – curious if it was interrelated as well. I have been in touch with customer support this entire time – sending them my concerns and screenshots when needed. They have been  lovely about everything.

May 11th

Charger decided to not work again. Got a notification that my battery was low, I let it drain this time and it would not charge. I tried everything that I could to get it to work – nothing.

About 30 minutes later, charger decided to work (huzzah!)

Later that evening, there was an update related for the Alert App – main thing about it was now there is a “Rest Mode.” The cool thing about this is that it has a higher sensitivity for seizure detection; so you would place this mode on when you are watching TV or sleeping. “Night mode” got renamed to “Lights and Vibrations” to avoid any confusion with “Rest Mode.” Another change, the batter life is no longer displayed in percent – rather with displaying full, high, medium, low, or charge now. They do have a guide to tell you about how many hours you have left – not really a huge fan, preferred the percentage better. This is just my preference and not any fault of the watch or company

May 12th

Well today I had a 3-hour glucose test; it would be nice if the watch could detect seizures for pregnancy. I had a few myoclonic jerks due to my blood sugar being low and all I did was sleep today. Curious if anything happened in my sleep since I am not normally like this, not even with my last 3-hour glucose test, but alas the watch is not suitable for pregnancy. Ah well.

I think the update was a huge help, although while it did not really state updating anything sensitivity wise other than seizure detection, it was way more accurate with my sleep cycles and activity – super pleased by this. Also, no issues at all with the charger today! Definitely restored my faith in the watch.

(The updated version on left – right: older version)

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Final Thoughts for Week One

A little disappointed overall at first, was not expecting so many glitches/issues for the price. I do fully understand it is relatively new technology, but basic functions such as sleep/activity should not be a huge issue with the recording. Some issues resolved on their own such as the clock and charger, which is fine, but can be frustrating for some. It seems that after the new update, it became more accurate with activity and sleep levels, which is great. Definitely boosted my confidence for the watch’s future.

I was little bummed about finding out it will not alert seizures for those who are pregnant – I can see why in some respects, but sometimes this is when women have their most seizures. Luckily during this pregnancy my major ones stopped. I still proceeded to get the watch now so I could work through it for after delivery. I have seizures without fail right before and after pregnancy and things can get scary with a newborn.

I fully plan on doing a follow-up review in a month to inform those who are on the fence about the watch and following my experience. I fully believe that as time goes on, it will only get better. By the end of the week I saw it improve with just one update – I was impressed. Although to be fair, it also could of been chalked up to the watch learning my body as well. I will say this: do not knock it out of the park yet. While it may seem like a steep price for a piece that is still “new,” I do believe it will be worth the investment.

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Are you thinking about owning your own Embrace watch? Leave a comment below followed by any questions you may have and I will try my best to answer them!

If you are looking into getting your own watch or finding out more, click here

Until next time!

Purple Day 2017 – Don’t Fear the Purple

Purple Day was started in 2008 by a nine-year-old in Canada by the name of Cassidy Megan. This is a day that those with Epilepsy and those who support us come together and spread awareness. This day is observed globally each year on March 26th to show support for our fellow warriors. While Epilepsy can be a wild ride and sometimes intimidating, know that you are not alone. Here is a a little reflection of my journey with Epilepsy and with a quick search of #PurpleTogether, you can find other inspirational stories about those who travel a very similar road.

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Th Beginning of a Journey

I was 19-years-old when I was first diagnosed with Epilepsy, which was six years ago this year. I was a performer with InProv Winter guard, switching into a new college, violist for New Bedford Youth Symphony, and heading out with friends every weekend without a care in the world. Then out of left field, all of that changed – worst part is, I cannot even remember what happened.

Last memory of that day prior was going to a cookout with my friends from InProv and taking a quick stop at Target – next thing I remember, I am in a hospital bed with my friends’ staring horrified and my father just arriving. I had no idea what hospital I was in, what time or day it was, why I was there, could not recall names, and slowly I began to panic.

When I was finally proved to be alert and oriented, the doctor came in to explained what happened. My friends then started stating what they witnessed and at that moment everything was a daze. I remember my dad’s face turning pale, my friends’ were still in shock – now what? I was told I had a seizure in my friend’s car, while she was driving. She immediately pulled over and called 9-1-1 and luckily a nurse pulled over to aid me and them through my first seizure. I had blood coming from my nose, convulsing uncontrollably, completely unconscious, and let out a scream before the event took place. My tongue was currently swollen, I could not remember even getting back into the car and at least an hour or two had passed and I do not remember anything since being inside of Target, which was 20-30 minutes before the seizure. My behavior was fine, I acted normal, then suddenly I screamed and everything took place. The doctor stated I experienced a grand mal/Tonic-clonic seizure. Then quickly reassured me that it was probably a fluke…at least so he thought.

I continued life as normal, of course my parents were quite hesitant. Both my brothers had seizures, although only in early childhood. I grew up around having to help my parents care for them and the painful wait for paramedics. I was already well aware of this life, but their seizures were not like mine – and that was concerning; this normality became unfamiliar. Then about a month later, it happened again.

I was in the bathroom, last I remember I had just entered the bathroom. I was told I let out this scream that you could not  ignore. The dogs started going crazy and my parents began trying to unlock the door. I bet you could guess what happened; I was seizing in the shower. My dad worked on the door while my mom called 9-1-1; they had no extent of my injuries or if I was submerged in water. Paramedics arrived and my dad went with them and yet again, my next memory is waking up in the hospital – but it was different. I did not feel like I was all there. I was way more groggy and confused. I remember my dad pleading with the nurse to not leave me alone as she sent me for a urine sample. I asked her if I should leave the door open, to which she stated I did not have to – I would not have another seizure. 19-year-old me who was desperately grasping for independence shut and locked that door because of that RN told me. Well, guess who again let out that scream in a locked bathroom? Guess how many security guards came to knock that door down? Guess who then got placed in a medical induced coma?

(Once I woke up from my slumber)

A bit over 12 hours later, I finally woke up to my friends and parents surrounding me. I guess they have been there a while, they all took a deep breath in to see me open my eyes. I was convinced it was still the previous day, my dad opened the windows and everyone kept telling me it was a new day. My dad told me what happened in the ER after I went to the bathroom.  He was upset and angry, he knew as soon as a code was called, it was for me. I just sat there, staring at my hands and the wires thinking, this is now my life. This was not going away, this was not a fluke – this is now my life.

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The Sun still Shines

For quite some time, it felt like Epilepsy did nothing but slow me down. My memory has worsened over the years, I can not work as much as I would like, I interfered with my children’s sense of security, I almost lost my own life, and I am no longer graduating with my peers. But in the grand scheme, things were not all that bad. For every negative, there is a positive – you just have to look for it.

Met my wonderful Partner – His name is Adam. He looked passed my diagnosis, accepted the fact I was a single mother trucking through school and working a basic job. When the seizures came, he stood by me and took us in as well as his family, just so I could rest even if my stubbornness fought hard against that. He reminds me that I am only human, that I am still like anyone else. For someone with Epilepsy, sometimes that is exactly what we need to hear. We are people too. Even with my waning memory, he is patient with me and even aids me. He is a reminder that I am safe and I am not alone. When my medication side affects decide to take over, and I will never forget this, he held me. He reminded me this is not me and he knows that. He reminded me that no matter what, we will get through this and we will get me. For the first time, someone understood. He understood. I will never let that memory fade.

Friendships Grow – I have made some wonderful friends through Epilepsy – whether it was through support groups or becoming close to those around me already. There is one person I would like to mention specifically, that is my long-time friend, Maria. She may not know it, but she did pull be out of a spiral. After my accident in 2016, I was lost – I worked very hard for 4 years to be told I could no longer continue because of something I cannot control. My daughters’ would cry every time I left the house thinking I would not come back or come back in blood as I did that time. My partner was worried about me when I would not respond – as that is what happened shortly before the seizure. I had a lot of guilt that became depression – I also had anxiety flaring up alongside it. Maria stood by me, she listened, and she pulled me up – probably unknowingly. She got me back into music which was a huge outlet for me growing up, she made more of an effort to check in, she came by now and then, and she brought me back into reality. There is a lot I never say out loud, but she still understood. I could never thank her enough

Passion for Pediatric Nursing Grew – I always liked pediatrics, but I had an amazing experience in Maternity and though perhaps that was my calling- until pediatrics. I will not forget the amount of children there for their first seizure or had been diagnosed with Epilepsy already. These children were afraid, theses families thought of it as a dead end, and in that moment, I imagined my family. I remember being in their shoes, just older. I took time with these patients, one patient I walked with around the halls just talking about Epilepsy and our seizures. They were grateful, they had hope, they saw a light – and I will not forget that. If I could instill that in more people, I could never complain about my job. In that moment, I found my calling.

Family Growth – Although, I hate to admit my girls may of had to grow up quick in some aspects and I see it every day in my oldest. Once they were able to grasp that mommy had “accidents” (what they term seizures), they had never left my side. My oldest does not like the idea of me sleeping alone, she sleeps besides me when my partner is not there. My youngest watches and reminds me to take my medication, she even learned which bottles were which. They grew interested in the medical field, my youngest always dressing up as a doctor during play time. My oldest is always hugging me and reminding me that “it’s okay mommy,” and I have her. Each moment we truly cherish, even at their young ages. While yes, I have a lot of guilt their first memory will be mommy being unconscious and convulsing, I am thankful for the bond that formed.

Meeting Fellow Warriors– It took me a while before I started seeking support from others with Epilepsy that may be around my age. For a long time, I wanted nothing to do with my condition and wanted it to just go away. I went through being made of, losing my independence, losing my license, almost losing my job, and feeling like I was incapable of functioning on my own. That was far from the truth in reality, but at that time, that felt like my reality. I struggled alone for quite some time, then I finally found support within a group and a girl I met online. Along with others we formed our own support group and it has been nothing but a blessing. We are able to be there for others so they do not have to struggle alone and we are there for each other when we go through times of darkness.

Gaining Self-Confidence – I chuckle when I reflect on how Epilepsy gave me confidence after turning me into a hermit. I was at a low that no one quite realized, but as I grew with Epilepsy – I started to gain confidence and resiliency. I became determined to not let it stop my ability as a mother, student, partner, and musician. I became determined to prove that I can still take care of myself and work. I stopped listening to the negativity that surrounded me. I wanted to be more than my illness, I wanted to be me. Of course, I understand all of this is still within limitation, but I can still have a fulfilling life.

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Remember, you are never alone

At the end of the day, at this present time, Epilepsy is here to stay for most of us. Whether it is having seizure or the side affects from medication and repeated trauma, it will be part of us forever. We must learn to embrace it and spread awareness in hope that one day, there will be a cure. Embracing Epilepsy can be hard, but you are never alone. Take a look at the #PurpleDayProject – support came in from the United States, to the United Kingdom, to Austria, and back again. There are support groups for just about every country and region. There are support groups online, in person, and wonderful medical professionals out there who will help you along your journey. You are never alone.

Your journey is what makes you,  you. We will have bad days, and we will have good days – that is human nature. It is okay to not be okay, it is okay to wish for a different path. Just remember, you are here because you are a warrior. You are strong and you are reliant. You did not  choose to give up, even if you were on the brink of making that decision.  Cherish the moments of happiness and embrace the moments of sadness with positivity.

You will prevail.

Promise.

Fear of Permanence

A fear that I did not know existed within me.  I do not like change too much either within my personal life, but permanence terrifies me. This fear for me rises from anxiety with the idea that good and pleasant things will fall through. It also rises from a fear that I will not be able to change something I do not enjoy – but instead, find a way to make it mediocre.

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Epilepsy is permanent. Have you ever imagined waking up one day, knowing you will never get better? Imagine being told that at 19, just a few months into being diagnosed with something completely out of left field. There is no magic pill to erase it, just to tolerate it. There is no guaranteed surgery or interventions. All you have is hope. To hope it gets better, to hope it becomes tolerable, and to hope it will not be your downfall. Coping with the permanence of Epilepsy is exhausting. For some, yes – they do “grow out” of it and able to live a normal life; very common for childhood diagnosis depending on the type. Some live completely seizure free with medication. Some do have success with surgery. Then there are some that may have less seizures, but they still come. And for the unfortunate few, nothing helps.

Even if we are not actively seizing, we still suffer. Epilepsy does not end when the seizure ends. For myself, head trauma is included every single time accompanied by blackouts and lost memories. With each seizure the time to recover is longer and lack of memory worsens. Then let us not forget the pills that lessen these events – they slow down cognition processes and understanding. They too affect memory storage. Then there are the mental health side; both condition and medicine induced. Sometimes we lose ourselves for the sake of tolerable life.

This is permanent for most of us. This is permanent for myself. There is no reversal; my memory will not come back. Memories lost will need to be triggered and constantly triggered to reform them. Without medication my learning processes may improve, but will equally be hindered by seizure frequency. Perhaps the constant seizures would have a worse effect. My family has been permanently affected and opportunities are forever missed. This is our reality.

  • “Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these” (source)
  • “The overall risk of dying for a person with epilepsy is 1.6 to 3 times higher than for the general population” (source)
  • “Epilepsy-related causes of death account for 40% of mortality in persons with epilepsy” (source)
  • “Neurologists say sudden unexpected death in epilepsy (SUDEP) is second to stroke as a cause of years of life lost because of a neurological disorder” (source)
  • Tonic-clonic seizures are an important proximate cause of SUDEP” (source)
  • SUDEP takes more lives annually in the United States than sudden infant death syndrome (SIDS).” (source)
  • Perspective wise: 47,055 people died in 2014 from drug overdoses of various types and 35,398 from motor vehicle accidents in the U.S. (source). Epilepsy takes 50,000 lives each year (source).

These are permanent facts we have to live with every single day. These facts have not changed and without support and awareness, will not see a change. All we can do is hope and confine in those close to us in our times of weakness.

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March 26th is Purple Day; a day in which we must raise awareness for Epilepsy. A day in which we must take a moment to realize that such a common phenomenon is underfunded and takes lives without notice. We deserve more than mediocracy.

Wear your purple with pride

 

 

 

Embarrassment and Humility: Taking Control

Epilepsy comes in many different forms and strike us in many ways. Some people have auras, which allows them to feel when a seizure is coming on. Some people, like myself, have no idea when a seizure is coming until you wake up in a hospital bed not knowing what day it is or who is around you. But something we can all to relate to on at least one occasion is having a seizure in public. No matter what type of seizure, it can be humiliating, embarrassing, or overwhelming for that person. We all have our own ways with dealing with these type of situations, but here are some tips, tricks, and methods to get you through the post seizure madness.

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Looking at our emotions

Some people may report feelings of embarrassment, humiliation, or feelings of being overwhelmed after a seizure. To help better ourselves and ease these feelings, we must understand where these feelings may arise. Embarrassment itself is a very self-conscious emotion. No one else will experience this emotion but you and not everyone will experience it in the same manner. Embarrassment usually arises from someone feeling as though they failed to act appropriately socially, a sense of guilt or shame, and a feeling as though their guard was let down and their pride was hurt. It tends to be triggered in social situations, like having a seizure in public.  It is also a very socially connected emotion.

In my opinion, having a seizure is a very vulnerable state. You lose control of your body, your thoughts, and your surroundings. You no longer can protect or shield yourself; you can no longer care for yourself and well-being. Your body is just there, on display, for some undetermined amount of time, without you having any control. This can be very overwhelming and trigger a range of emotions. But luckily, there are different ways to deal our feelings.

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Remember: Take Control

How do you take a control when you completely lost control of yourself in front of a crowd of people? People are social and emotional creatures, they will mimic what you project after a traumatic event more often than not. One way to take control is by changing the mood of the situation. One way to do this is by displaying confidence. People will ease their tension and divert attention when they see that you are aware of what is going on and show a level of competency. Everyone will have their own way of taking control of their situation and easing the fears of those around them; another example would be through laughter. While yes, why should you have to worry about how those around you feel; you will find that being able to break the tension and having a sense of control in the smallest ways will help ease your feelings of embarrassment. Even if you only start with taking control of your own thoughts after a seizure, in due time, you will be able to apply it to the masses.

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Laughter

Laughter is the best medicine While yes, there is nothing funny about having Epilepsy or a seizure, laughter can be used as a coping mechanism. If a seizure was to occur around friends or with someone whom you are close and comfortable with, try making light of the situation. I have heard some people say “yeah sorry, my brain malfunctioned” or “what do you mean, you do not pee yourself too?” While this can be very hard for some people to poke some fun at, especially early on in a diagnosis, some people find this a way to deescalate the tension and worry within those around them.

When people see you crack a smile or treat a situation in a relaxed manner, they also tend to relax – seeing it as not an emergent situation. They tend to stop trying to overcompensate for your feelings by being overly concerned and overbearing. Some people want their space after a seizure – a good way to make someone feel safe and give you that space is to make the situation light. This does not have to be directly through laughter of course, one could just simply explain, “oh this happens a lot, nothing new” then point out a positive in the situation. That person or the surrounding people will see that you are handling the situation in a positive way, therefore make it easier for them to feel positive about you.

 How to apply to self: You can apply these methods on a personal level to. Take a moment to lighten the situation from within whether it is through laughter, pointing out positives, or simply telling yourself “here we go again, I got this.” Be positive, be uplifting – you are doing amazing.

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Education

Education? Who is in the mood to give a lecture on Epilepsy and seizures after having one? Probably no one, but there are some beneficial factors for giving a brief synapse of your condition or type of seizures to those around you. Quite similar to what I mentioned in laughter, it helps people ease up and feel confident in your ability to care for yourself. It eases the tension and in return will help you feel less embarrassed or overwhelmed due to being moved out of the spotlight.

Have you ever noticed that nurses tend to give a sigh of relief when they know you have a history of seizures? They are able to make the mood lighter for you and give you the proper time that you need. Aside from the fact that it is probably less work on their behalf, they have confidence that you know what to do to care for yourself. This diverts attention away from you and allows you to reconnect with yourself. This is even more true for the everyday average Joe. If you can show off your knowledge, their attention will go elsewhere and ease the feelings of embarrassment.

 How to apply to self: Remind yourself, you know yourself and your condition best. You know what to do; you know how to manage your seizures. Boost your confidence through what you know. You are a smart cookie, and a tough one at that!

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Getting Answers

Sometimes we get embarrassed when we do not know how things were perceived. The unknown can be quite scary and in the realm of Epilepsy and Seizure Disorders, that unknown realm can be our best unfortunate friend. Finding answers gives us a sense of security and helps us feel calm. Sometimes after a seizure, you need to do just that. Ask what happened, ask who was around, do not be afraid to approach people. You may not see it in the moment, but they want to help – most just do not know how. They are willing to answer and be there for you. They are not passing judgement; although it may feel that way because we did something atypical, yet typical for us. Gain control by getting answers and making the unknown known. You will have a better sense of realizing how people actually feel and that the situation was not as bad as you think.

 How to apply to self: If you are uncomfortable with approaching people, ground yourself. Look at yourself, feel what hurts, see how much time has passed, think of the lease severe seizure you had. Try to answer your own questions by observation and feelings, give yourself that validation that it really was not as bad as you thought. Let yourself breathe.

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Moving Forward

This may be easier said then done for some. How do you just “move on” from having a seizure and becoming what you perceive as a public spectacle?  First, take a moment and breathe. Ground yourself to the present, remind yourself that you are okay. Collect your thoughts and feelings and when you are ready, move one. Literally and figuratively. Just get right back up and keep moving forward. Thank those around you for their help and support, reassure them that you are okay, and walk away like it never happened.

Now, this may require quite a bit of practice and the “fake it till you make it” theory, but there is no reason to linger on something that is not making you feel good. Let your mind move forward, do not dwell on what happened or could have happened, do not put all your focus on the seizure itself – at this moment focus on yourself and your well-being. You are safe, you are secure. This will also no longer make the seizure the focal point. When people see you moving on, they know it is safe for them to move on too. When people see your bravery, even if you must fake it at first, they will be brave for you. You have a lot more control than you think.

 How to apply to self: While even doing this on a personal level only may be difficult, just give it a shot. Let your mind go. Do not get wrapped up on focusing on the seizure and the event, focus on the now and go from there. Prioritize your safety and find comfort in knowing you are still here, you still have a pulse, you still have life left in you. You can get through this, you will get through this. Redirect your attention and focus elsewhere

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Forgive Yourself

You may not feel like you are mad at yourself or that you are blaming yourself, but on a deeper level, that just may be the root cause Even if it is not the situation for you specifically, still take the time to remind yourself, this is part of you – this is NOT you. Epilepsy and Seizure Disorders do not control you or your life. It may try for 5 minutes or maybe even 10-20 minutes, but remember, you are a fierce warrior and you will take your life and time right back and hold onto it longer than it ever could. We cannot control every aspect of our life, with or without seizures – unexpected things will happen, but if we can make peace with ourselves, we are one step ahead.

You are a Warrior.

Keep strong.

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Looking for how to handle with Seizures in Public?

Click the link below!

http://thestorminsidemyhead.com/2016/10/seizures-in-public/

 

Possible Precursor to Epilepsy

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There is not much of a surprise when you hear Epilepsy and Psychiatric Disorders are connected. People would expect that due to receiving the diagnosis or if there was a structural abnormality that may interfere with the brain’s normal processing. There has been a lot of research showing a clear comorbidity between the two. A thought I have always held onto and had not looked into further was if psychological conditions could serve as precursors to Epilepsy. A member reached out to me personally asking if I could do a little research which ended up dabbling into my own questions. I will present to you quick synapses and links to research articles that may make you begin to ask questions.


 

  • Schizophrenia-like Psychosis and Epilepsy: The Status of the Association

Source: https://www.ncbi.nlm.nih.gov/pubmed/9501741

Date: 1998 (yes, technically deemed outdated – but for reference purposes)

What is it saying: Epilepsy may be related to schizophrenia-like psychosis due to structural brain abnormalities (e.g. cortical digenesis or diffuse brain lesions). Seizures may modify the presentation pf psychosis and psychosis may modify the presentation of seizures.

  • Bidirectional Relation Between Schizophrenia and Epilepsy: A population-based Retrospective Cohort Study

Source: http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03268.x/full

Date: September 19, 2011

What is it saying: Incidence of Epilepsy is higher in those with Schizophrenia and Schizophrenia patients have a higher incidence of Epilepsy. Thus, the two conditions may share a common cause

  • The Secondary Schizophrenias

Source: http://onlinelibrary.wiley.com/doi/10.1002/9781444327298.ch9/summary

Date: March 08, 2011

What is it saying: Epilepsy may/can cause Schizophrenic-like signs and symptoms which can lead to Schizophrenia-like psychosis

  • Schizophrenia Like Psychosis in Patients with Epilepsy Case Report

Source: http://www.ucms.com.np/journals/vol2/SCHIZOPHRENIA%20LIKE%20PSYCHOSIS%20IN%20PATIENTS%20WITH%20EPILEPSY%20CASE%20REPORT.pdf

Date: 2013

What is it saying: Epilepsy and Schizophrenia are both due to altered cerebral functioning and their history is often connected. Focuses on generalized tonic-clonic seizures presenting with schizophrenia-like symptoms

  • Recurrent Schizophrenia-like Psychosis as First Manifestation of Epilepsy: A Diagnostic Challenge in Neuropsychiatry

Source: https://www.dovepress.com/recurrent-schizophrenia-like-psychosis-as-first-manifestation-of-epile-peer-reviewed-article-NDT

Date: May 03, 2010

What is it saying: Studies have been done on Schizophrenia-like psychoses in Epilepsy since 1950s. It has been well documented that Epilepsy may be associated with psychotic disorders but, less widely recognized that the relapsing psychotic phenomena may be the first and only symptom of Epilepsy. This case study was focused on two patients specifically with an initial diagnosis of Bipolar Affective Disorder and Schizophrenic Psychosis. Treatment began using more epileptic tactics and during a follow-up, patients were free of Epilepsy and psychotic symptoms.

  • Epilepsy, Suicidality, and Psychiatric Disorders: A Bidirectional Association

Source: http://onlinelibrary.wiley.com/doi/10.1002/ana.23601/full

Date: August 07, 2012

What is it saying: Psychosis, depression, and anxiety significantly increase before Epilepsy diagnosis and after as well as one year after diagnosis. This shows that an underlying pathophysiological mechanism seen in both that lowers the seizure threshold and increases risk for psychiatric disorders

  • Hospitalization for Psychiatric Disorders Before and After the Onset of Unprovoked Seizures/Epilepsy

Source: http://www.neurology.org/content/78/6/396.short

Date: January 25, 2012

What is it saying: The risk of developing an unprovoked epileptic seizure is highest less than 2 years before and up to 2 years after a first psychiatric diagnosis (includes: depression, bipolar disorder, psychosis, anxiety disorders, and suicide attempts). Higher prevalence with those having depression and psychosis.


Wait, what does this all mean?

While yes, this is open for individual interpretation to some degree – you cannot deny there is a strong correlation between psychiatric conditions and psychosis with Epilepsy. At times, it appears this may be the initial or only sign of Epilepsy and could serve as a precursor to an eventual epileptic diagnosis for some people. Unfortunately, there is a gap between psychiatry and neurology that may allow some people to fall between the lines to be conveniently pushed into one section or another. I believe that this is what also makes Psychogenetic Non-Epileptic Seizures (PNES) so difficult and avoided. What if PNES is a soft-name for a precursor to  Epilepsy? What if we can catch Epilepsy through psychiatric disorders before the onset of a seizure? For me, this has opened up a lot of questions and I hope it made you think too. If you feel as though your psychiatric diagnosis does not quite fit your situation, do not be afraid to question your doctor. If you feel as though your PNES may be more epileptic, again, question them. Of course, this situation may not be for everyone, but questions get answered. Don not be afraid, advocate!


What are your thoughts or opinions? Did this get you thinking?

Share in the comments below!

 

Fireworks and Flickering Lights

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This blog was originally written for Guy Fawkes Night/Bonfire Night which was celebrated November 5th in the U.K. (see the post here) The more I thought about it and searched around, the more I saw that it can be difficult to gather information on how to prepare for holidays that involve firework displays and flickering lights. Here is what you need to know before going out and celebrating.


Get packing!

                Before heading out to your festivities, make sure you have a few things handy such as:

  • A watch/charged phone with a clock
  • Your medication(s)/extra medication
  • Something to drink/snacks
  • Emergency medication
  • Insurance card and picture ID
  • Medical alert ID – if you do not have one, take an index card and write in big letter “Medical Alert” and on the back place your name, date of birth, medication(s), diagnosis, and emergency contact

It will also be beneficial to have a plan of action developed between you and whomever it is you are attending festivities with. This way, everyone will be on the same page and prepared if a situation occurred. You will also want to discuss how emergency medication should be administered and when to call an ambulance. What else may be beneficial, of course depending on the type of seizures associated with your Epilepsy, is preparing a med-pack/first aid kit. This can include items such as gloves, bandages, notebook and pen, hair tie, and anything else you may need specific to your seizure (find out about my med-pack here: http://thestorminsidemyhead.com/2016/09/epilepsy-med-pack/)


Let the Show Begin!

While firework displays can be absolutely captivating – it may send those with Epilepsy, especially Photosensitive Epilepsy, into a bit of a tizzy. Here are some quick tips to help reduce the chances of triggering a seizure:

  • Take your medication on time – things can get hectic when meeting up with friend and celebrating but be sure to set an alarm just in case so you remember to take your medication. This is your first defense against a seizure.
  • Get sleep before the event – you will want to make sure you get plenty of sleep, especially if you have a long night ahead. Lack of sleep get lower your seizure threshold and the more rest you can get the better.
  • Eat, drink, and be merry – Be sure to stay hydrated and get a proper meal in. This will help increase your seizure threshold and decrease the chance of a seizure occurrence.

←Now for the Finale→

  • Cover one eye – do you start to feel funny the colorful lights glisten? How about during the finale? This can be tough for those with Epilepsy but surprisingly, cover one eye can be beneficial in preventing a seizure. This reduced the amount of visual stimulus coming into the brain; therefore, the brain does not have to work as hard to stay calm.
  • Do not sit up close – that may sound like bummer but the further away you are, the less likely it will trigger a seizure due to the light being less intense as well as the flickering being reduced by the fireworks.
  • Polarized sunglasses – wearing sunglasses at night may sound silly but, this can actually help reduce your odds of a seizure – especially for those with Photosensitive Epilepsy. Now, they are probably going to be more of use during the day, but if you know the flickering of the fireworks or large bonfires will probably leave you feeling uneasy, go pick up a pair. If you are wondering what type of lenses, some research articles suggest blue lenses but again, this depends on the person.
  • Let someone else drive – it has been a long night, you watched a beautiful light show, and now it is time to call it night; well for some. On your way home, if you are able to drive – ask someone else to. This will not keep yourself safe, but others around you too. Seizures can strike at any time and is better to stay on the safe side. Do not be afraid to ask a friend.

Do not forget, at any point that you begin to feel an aura or a twitch – tell someone. Let someone know that you do not feel okay and get yourself to a safe area. If you know it will result in a tonic-clonic/convulsing type of seizure, get low to the ground and away from the waterfront if you are near one. Make sure you are not near any hard objects and that someone is with you and ready. If you are unsure what the resulting seizure may be, take the precaution and get low.


Are You Ready?

                While it may seem like a lot of work, your health and safety are worth it. No one wants to spend a holiday in the hospital while everyone else is out and about. Take care of yourself and follow these tips to ensure a safe time and wonderful time/


Do you have any tips and tricks you would like to share? Remember these tips can be used for multiple holidays that may involve:

  • Flickering lights/flashing lights
  • Fireworks
  • Late nights

Onsies for Epilepsy

Hey There!

To all my fellow warriors, fighters, and those who love and support us; November is Epilepsy Awareness month. I challenge YOU to post a selfie or a group photo in your onsies with one epilepsy fact to your social media page. Tag it with #onsiesforEpilepsy this November to help spread awareness and for a chance to be featured (with your permission of course). Please join us in spreading awareness all throughout November and feel free to drop a photo below in the comments!

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←All types of onsies are welcomed; as well as pets→


Seizures In Public

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“Where am I? How did I get here?” – does this sound familiar? What do you after you had a seizure in public. “Did anyone notice? What do I do now?” Here are some quick tips on dealing with Epilepsy and Seizures in public


Before a Seizure

  • Medical Alert ID: If your seizures come without warning, are frequent in nature, or you become disorientated and confused for a while after a seizure – it would be beneficial to invest in a medical alert band. This way if anything does happen in a public place, you will have some basic information in visible sight. Information usually includes: you name, your condition, medication(s), and an emergency contact. If you have rescue medication – may place that as well.
  • Spare Medication: If you are unsure whether you will be back in time for your next dose or a chance you may stay elsewhere for the night – bring extra medication. This is your first line of defense against a seizure and you should always be prepared. Sometimes we do not know who we will run into or where exactly we are going so having at least one extra dose on us can be beneficial.
  • Rescue Medication: Carry your rescue medication (if prescribed), wherever you go. You never know what may happen or what may send you off. Be sure to have specific directions along with it or on an index card in a med-pack or a bag that you use so others may administer it to you in an event of an emergency.
  • Eat, drink, and sleep: Sometimes we get busy and tend forget about our basic needs. Sometimes we may think “well, I can wait until the next meal.” Before going out, be sure you have ate something, are staying hydrated, and have plenty of rest – especially if you have a long night ahead of you. Of course, if you are going out to dinner or lunch, you do not want to have a full course meal but be sure you have had a little snack at some point beforehand. This will help increase your seizure threshold, meaning it will make it harder for seizure activity to occur, and help keep you going strong. You need to give your body and brain the best possible chance.
  • Bring a med-pack/First aid kit: It does not have to be anything major and tailor it to your specific type of seizures. See here for what is in my med-pack if you need help getting started – reminder: this is tailored towards me and I made it more on the universal side. I have tonic-clonic seizures without auras, therefor I prepare for injury. I do not wet myself or lose control of my bowels, therefor I did not state packing extra clothes. It depends on your specific situation.
  • Auras: If you have auras; do not ignore. If something does not feel right, take the warning. Whether this means going back home or finding a less stimulating area – do so. Do so in a place where you can get low to the ground and away from objects if possible to promote personal safety. If your seizures do not involve convulsing – still do find a less stimulating place to relax and try to keep as calm as possible.
  • Go out in pairs: If you have frequent seizures; there is no harm in making sure you have someone to go out with you. While yes, this can be annoying you, it is a matter of your health and safety. If you just feel “off,” when you usually do not or know that you have not gotten a lot of sleep and that is a trigger – do not be afraid to phone a friend or family member to tag along with you.
  • Call/Text: If you are going out alone, let someone know where you are going. If you feel off, call or text someone so there is a time frame of reference and someone will be aware of where you are in case of an emergency.

After a Seizure

  • Disoriented and Confused: If you have no idea where you are or who is around you; do not panic. Take in some deep breaths, try to relax, and ask someone what happened. If there is no one around – take time to relax and slowly reorient yourself. Try to remember the last thing you were doing or place you have been. Check recent texts, calls, and even receipts to see what you can remember last.
  • Phone a friend: If a seizure had just occurred, it may be beneficial to call a friend to accompany you, pick you up, or simply talk you through your postictal phase. This friend may be able to help reorient you and will be able to help you track your seizure.
  • Check for injuries: If you are alone, check yourself for injuries. If someone is with you, if you feel comfortable have them also check. You want to make sure no harm was done and assess if medical attention is advised.
  • How long was I out for? If you do not know or do not have a frame of reference – call your neurologist if it is during regular office hours. If it is late at night, assess yourself or have someone else assess you. There is no harm in taking a visit to the ER or walk-in if you are unsure but not all seizures may require medical attention immediately. Regardless, phone your physician or specialist as soon as you can so they are aware or if you have a plan to document occurrence, just do as your care plan states.
  • Do not drive: Right after a seizure had occurred, I strongly suggest to not drive yourself home. Ask a family member or friend to come meet you to either pick you up. You may have enough assistance where someone else could drive your car home; if not, talk to the security of the facility you are located at or manager on what to do with your vehicle. I am sure they will be understanding and if anything, call your local police department. They would rather you be safe than attempting to drive home
  • Rest: Take your time, take things slow – do things at your own pace. When you get the chance, be sure to rest. It can be stressful having a seizure out in public, especially by yourself. For myself, when I have a seizure alone, it leaves me uneasy with a lot of unanswered questions and this may happen if no one is with you during the time you come to. Just remind yourself: you are safe, you are alive, and you are doing okay.

Gaining independence from Epilepsy can be hard, but is doable with the right support system. Never give up hope

What if you are the friend/family present during the seizure? What if you were a stranger walking by? Do you know what to do? Check  here

Coping with Epilepsy – Social Acceptance

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The Social Side Effects

Epilepsy affects many parts of our lives; friendships, family, work, school, relationships, and so on. There can be negative social ramifications such as losing what was once best friends, family distancing themselves, or coworkers and colleagues becoming hesitant when around you. Some of us deal with stigma in our daily life followed by shocked faces and funny looks. But there are also positive outcomes like finding new friends, building stronger relationships, and finding new opportunities that you never knew existed. I have recently written a post on self-acceptance of epilepsy and the journey it takes to get there – which can be quite long. But how do you deal when others are having an issue of acceptance? How do you cope with the loss of friends and the distance of family members? You will be surprised with how similar both roads are. Here are some tips I have learned along my journey.


Self-Acceptance

First and foremost, you must accept Epilepsy to a degree within yourself before you try to talk to friends and family about it. Of course it is possible to go ahead or simultaneously travel the route of personal acceptance and social acceptance but things will become easier if they are already accepted within. I often find topics to be easier when I understand them for myself. Even if you do not completely accept the idea of Epilepsy entering your life – at least begin the process of understanding Epilepsy or perhaps your process will start here.

Educate

As I said in my last post – education is key. Educate your family, friends, coworkers, and colleagues on Epilepsy and your type of seizures. This will help them gain confidence in your knowledge about you condition as well as giving them personal confidence on how to help you. People are terrified of the unknown – they do not like to be caught off guard and some do not like the feeling of responsibility that they did not ask for

  • Erase the Stigma: Education is also helpful in removing stigma. “You have Epilepsy; I am not sure if you can do that” – have you heard this before? This blank statement usually comes from people who do not bother to ask you about your Epilepsy or do not listen to you but rather hear the term Epilepsy and revert to what they know. There is a lot of information out there, but from personal experience I noticed people tend to become fixated on the worst case scenario. They will avoid giving you a chance at something or inviting you somewhere because it avoids a potential risk. While yes, in some cases this is the best way to go, but unless the risk is involving your life being placed in harm’s way, then vouch for your right to have a chance. Educate them so they know how Epilepsy affects you. Step by step, this will help erase the stigma we face daily. That person may become inspired and tell three other people “did you know a person with Epilepsy can_____” Because we CAN and we WILL break these walls – give yourself a chance and others will follow.

Reassurance

While the idea of consoling someone older than you such as a parent or caregiver or consoling a friend on your condition may seem funny; they need reassurance just as much as you do. Some parents/caregivers may place the blame of Epilepsy on themselves or feel that it is their fault. They may feel that if they did something differently, you would not have to go through this journey. They may begin to harbor guilt which can manifest itself into arguments or unwanted distance. It may be beneficial to sit down and reassure them that this is not their fault – it is a random circumstance. Do not forget to remind them that no matter what, you appreciate what they do – they are going through a hard time right along with you. This can become emotionally overwhelming for you – as you may not understand why they are emotionally all over the place when YOU are the one going through Epilepsy in the literal sense. Do not forget they travel this road too as they watch every step you make.

Communication

Always keep a clear line of communication. Communicate your feelings, your concerns, and do not be afraid to ask them about how they feel or what their concerns may be. Sometimes this can be an emotional experience – you may hear things that upset you or you may not know how to react. This is okay. It is better to have things said and try to work through it as a team then harbor feelings of resentment, guilt, and/or fear which can add stress that is not needed. This can be therapeutic to both yourself and the other person.

Grievance and denial

This may be difficult to deal with when it comes to family – even peers. Some people may not believe you at first – this could be out of their own fear and/or wanting to avoid the situation. Some may truly not believe you and see it as “attention seeking” and more of a behavioral issue. One of the hardest things you will have to do, but yet one of the boldest and bravest, is to sit with these people and explain to them what is happening. I know it may sound cliché or redundant, but have a serious heart to heart, let them know how this makes you feel and ask them why they feel that way. This may be something that can be easily worked out or something that time itself may have to work out. Know that just like you, family and friends will go through a period of grievance that their loved one’s life will be changed and acknowledging that difficulties are going to come. It is hard to watch someone go through a condition like Epilepsy where they can feel helpless at times.

  • My perspective: I remember when my brothers had seizures – way before I developed Epilepsy myself. I remember standing there feeling like I could not do anything and with my elder, younger brother being essentially non-verbal – I wanted nothing more to experience what he did. Granted, I may have cursed myself at a young age but I wanted to help him and help others understand what he was going through. Family and friends will go through these emotions as well – they do not know what they should/can do. It is going to be part your job to help them along and educate them. This can be done either by giving them pamphlets, links to support groups and blogs, having them come to neurology appointments, or simply talking about your condition with them.

Loss of friends and distance of family members

While I wish I could say this will never happen, realistically it could and is something to be prepared for. Epilepsy is a lot to handle on your own – there will be times where you need help. Some people may have very mild cases and may not need the extra reliance. But for those of us who will – friends and family may not always be the most understanding. Once they go through the initial shock of the diagnosis – some may decide to make their distance. This can be an emotional time as well as close friends and family members may become non-existent. If talking to them and giving them some education on the topic does not help them cope; unfortunately, you cannot force them to stay and you should not have to. This acknowledgement can be hard to cope with but remember this; you do not need people like that in your life. If someone cannot accept you for both the good and bad – they do not deserve to be in your life. A true friend and real family will never walk out on you. They will never degrade you and they will never talk down to you. You DESERVE better than that. You WILL find new friends and new support – you may become closer to some people who were originally distant. With every person who walks out, a new person will walk in. You deserve nothing but the best; remember that.

  • Friends that leave and want to return: On occasion this may happen; a good friend might take a hiatus and come back into your life expecting you to welcome them with open arms after they left you at a low point. I will say that I cannot counsel you on what to do – this is a personal decision. What I will say and recommend is you have an open conversation without judgement and keep an open mind. Everyone copes differently. Perhaps they rethought their actions or maybe they came to a point of acceptance. It is hard and difficult decision to make; but everyone copes differently. It is entirely your choice to let this person back into your life and no one should ever judge you for the decision you make.

Strength, Courage, & Positivity

 Another subject that may sound rather silly but does help a lot is staying strong and courageous throughout your journey as well as keeping a positive attitude. While you should do these things for you own self-acceptance – it promotes social acceptance as well. When someone can see that you have a control on your feelings towards Epilepsy – it gives them comfort and gives them courage to take on this journey with you. No one else can experience Epilepsy the way you do and everyone will experience it differently. If you can take it on with a positive attitude; it will attract the masses and give them strength and courage to stand beside you as well as give them hope. As a family member, friend, or caregiver – it can be hard to stay positive at times; especially when you are witnessing low points of someone you love. But the positivity you have held all along will shine through another person when you cannot keep your head up on those low days. You will have encouraged and built a strong support system on pure strength, courage, and positivity.

Social Acceptance

While the journey may be tedious and may have to be restarted with every new social situation – it is worth every step. You will find out the strength of your support system, friends, family, and caretakers. You will begin to understand others better and on a different level than before. You will also meet new friends and extend your support system. Each day, you will begin to knock the walls down of the stigma that surrounds Epilepsy and Seizure Disorders. With every step you take, you are one step closer to not only helping yourself, but everyone around you and the Epilepsy and Seizure Disorder community as a whole. You are a warrior. You are a fighter. It may be tedious – but you will get to where you need be. Promise.


Never Let Anything Stop You

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Here are some of my accomplishments despite the stigma and despite Epilepsy

  • Top left: I got accepted into a Leadership program at my college
  • Middle Left: I was a volunteer at a pediatric oncology clinic and became camp counselor at a pediatric oncology camp
  • Bottom Left: I currently work at a local hospital
  • Middle: My little family – my two beautiful girls and loving partner
  • Top Right: I was inducted into Sigma Theta Tau International – a nursing honor society
  • Middle Right: My first love will always be music. This year I finally had time to get back into it with a help of a close friend. I currently play French Horn for a local Portuguese Band
  • Bottom Right: I am senior in a BSN program to become a RN

Share your thoughts and your accomplishments! Together, let us knock down the walls of stigma and become one step closer to social acceptance