Fireworks and Flickering Lights

Fireworks

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!

14650300_10211139212736322_832220277355812493_n

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


Working with Epilepsy

index

Barriers

As much as I would like to say discrimination does not exist; it does. It is part of human nature to analyze and judge effectively, but it is not part of human nature to ignorance as a form of judgement.

Epilepsy can be scary. It is scares employers, teachers, friends, family, coworkers, and those who bare the diagnosis themselves. It is the unknown of when the next seizure will strike or the unknown of what the root cause is. It is the unknown of how the future will forever be impacted.

There are discrimination laws put into place by the Americans with Disabilities Act (ADA) and Epilepsy does fall under the protection of the ADA; but some places can find loopholes. When they find these loopholes they do not bother to ever ask the person “how does this effect you? How does this effect your work?” They start making assumptions, then base decisions upon these assumptions. My main goal today is to help those who may be new to epilepsy or do not know where they stand under the ADA when it comes to employment.


The Interview

Working with Epilepsy can be a challenge. First question that tends to pop into one’s mind is “am I allowed to work? Should I work?” While we would love to answer that question for ourselves, we do still need to seek an expert opinion. Talk to your neurologist and see if you are cleared for work first and foremost. As much as we love to be independent and make our own choices, we need to make sure we are safe and we are able to keep others around us safe. Also, this documentation that you are cleared for work protects you – an employer cannot use the excuse “well I do not think you are fit to work” based on you having seizures when your specialist says otherwise.

Next question most people have is “when do I tell them?” This can get tricky but if you understand your rights under the ADA, it gets a little easier. When you are applying for a job, an employer “may not ask questions about the applicant’s medical condition or require to have a medical examination before it makes a conditional job offer.” What does this mean exactly? They cannot ask you about epilepsy, if you have seizures, frequency seizures, or if you are on prescription drugs during the interview process. They CAN ask you if you have driver’s license or if you can operate machinery and that portion you must answer truthfully. As for anything else, the employer at that point would be crossing boundaries with the ADA. Before accepting a job offer, you still do not have to disclose the fact that you have Epilepsy or a seizure disorder. ADA does not require those with disabilities to voluntarily disclose their disability UNLESS they will need reasonable accommodations during the interview.  Also, an employer cannot ask questions about your Epilepsy if you have voluntarily disclosed it. They cannot as about treatment either, but the employer CAN ask if you need an accommodation.


After the Job Offer

“What if I start working and realize it is too much and did not request accommodations?” You may request reasonable accommodation after becoming an employee as long as they are made aware of your condition. Now once you have accepted the job offer, they may ask you questions about your Epilepsy,  but since you now have the job, if any repercussions occur it will fall under discrimination. Although, it will not be considered discrimination if you cannot perform the job you were hired to do due to you condition or pose as a direct threat to health or safety of self or others that cannot be reduced or eliminated through accommodations. Employers may not disclose anything about your medical condition or accommodations to other employees either, as this is a breach of confidentiality.

“What exactly are reasonable accommodations?” Some accommodations listed may include: adjustments to work schedules, extra breaks, checklist to assist in remembering tasks, permission to brings a service animal to work, place to rest after a seizure, reassignment to a vacant position if the employee can no longer perform the original job, and so on. Do know than an employer may request a documentation stating that the employee has epilepsy and that accommodations need to be made. Also note that an employer does not have to provide these accommodations if doing so will cause hardship to the company (difficult to do or expensive). Now things here can become grey and it is a fine line to walk upon. If the employer decides it cannot meet the accommodation, they may choose an easier or less costly accommodation as long as the employee needs are met.


My Experience

I have not let Epilepsy stop me from working as my Epilepsy is also not severe enough to keep me out of work. Everyone will have a different experience with Epilepsy and the workplace due to severity, frequency, and type of seizures – but we all still consider the same questions of when to tell. For me personally, I do not require accommodations for work. Do I qualify? Yes. But I do not feel my job is impaired by my condition. Due to this, I decided to withhold the fact I have Epilepsy upon the interview and pre-empolyment process. Once I was officially offered the job and had agreed to take the job, I told health services when I went for my health screening. They asked if I needed accommodations, I said no and I have not heard anything about it since. They were really nice about everything and appreciated the fact that I told them. Since it is on my file, in the event that I ever needed accommodations, I would be able to have them. Ironically enough where I go for my neurologist and where I work is in the same place and under the same company. So if anything was to ever happen, everything possibly needed is already there.

A rule of thumb that I use is if they do not ask, they do not need to know unless it is putting someone else or myself in direct harm. I always tell employers after accepting an offer due to the event if, by chance, I had a seizure at work, they would not panic (this has not happened yet thankfully). I have been dealing with this condition for 5 years so I have a good handle on how this will effect me and my neurologist also has confidence in my knowledge of my condition.

It can be scary to tell you employer, as not everyone will be kind. Telling coworkers is another issue. I have told coworkers in the past and have gotten ridiculed over it so it takes me a while before I find someone I can tell. It is good to have at least one person who knows that works with you, if not then wear a medical ID bracelet/necklace as a precautionary measure. Although, have confidence in knowing you ARE protected and do not be afraid to fight for your rights. You define Epilepsy.


All information was gathered from the following sites, also feel free to visit them to learn more

←For those in the U.K. seeking information→

You may also call the Epilepsy Foundation’s Toll-free Helpline and ask any questions at:

1-800-332-1000
(en Español 1-866-748-8008)

Calls are answered 24 hours a day, 7 days a week.

Help!

Do not be afraid to ask for help

Help – a simple four letter word that can grab the attention of almost everyone, yet so many of us are afraid to use it. For myself, I am one of those people. When you get first diagnosed with a condition, in my case Epilepsy, you notice people will start to treat you differently and act different around you. You are more carefully watched and more restricted. While we know it is in good faith, we miss our independence and being our own person. For myself, this made me resent the word “help.” Granted, I did and, to a point, still do need it. For me personally, has been very hard for me to accept. But I did. I asked and I do not regret it.


What type of help is available?

There are many sources of help for people with neurological issues. There are government funded programs, programs by state and country, support groups, help lines, help at school, aid if your condition does not allow you to work, counselors, and so on. Follow the link below to a little directory I made where you can find resources in your area for Epilepsy.


What type of help did you need?

While it may be debatable if I should be working at this current moment according to some people and questionable that I should even be in school this semester. I am in school and I will be going back to work this week – all cleared by my neurologist. Some people will look at me and ask me why I would need help if I am functioning as normal. While yes, I am functioning normally in one sense – my brain is still not up to par. Reading takes a long time, comprehending things becomes time consuming, and information recall/memory recall is still a struggle. Now, what if I am taking a test that is timed (which all of my exams and test are) and I do not finish because my brain is in slow-motion due to medication I HAVE to take in order to prevent seizures from occurring? Is it fair to penalize someone over that – especially when it is not their fault? Of course not! This is the type of help I need. It is still considered help and is still something I had to come to terms with. I did not want to feel different or feel like I cannot handle my workload but the truth is; it is simply not my fault. Neither is it yours. And only now, have I came to terms with this. I have been battling this feeling since 2011 and there is not a thing wrong with asking for help.


What if I need help in school?

Do you think your condition or medication is effecting you and your ability to learn? A good place to start is talking to your primary care physician or specialist. They will need to write you a note with the following information: a statement of condition or diagnosis from a licensed professional, description of how the condition was diagnosed and how it may/typically progresses, some places may require a description of the diagnostic criteria and what tests were done in order to diagnose you, information on how the condition limits your functioning by severity and frequency, your current treatment plan, and the recommendations for reasonable accommodations and an explanation of the need for specific accommodations. This letter will then go to your disability office and they will tell you what resources are available. Note that this is not just for people with Epilepsy, but anyone who may need a reasonable accommodation.


Wait, what is a reasonable accommodation?

ada

Reasonable accommodations fall under the Americans with Disabilities Act (ADA) and protects those with disabilities against discrimination whether it is in school or in the work place. A reasonable accommodation is “any changes in the work environment (or in the way things are usually done) to help a person with a disability” (https://www.eeoc.gov/laws/types/disability.cfm). It may be requested orally or in writing at any given time (tip: Schools really appreciate this at the beginning of the semester as soon as possible so they can make the accommodations. Sometimes this cannot be helped). Although, there is a loophole for employers; they can deny the accommodation if “doing so would cause significant difficulty or expense to the employer.” This goes by the size of the company and their finances.

A reasonable accommodation may be wheelchair access, extra time on exams, color-coded filing system, flexible work schedule, telecommunication devices, bigger fonts, and so on. It never hurts to ask an employer or school if they can make accommodations so you can perform to your true potential. If you have further questions about if you qualify or want more information on the topic, check out the following links:

←For those from the UK→


Even if you do not need these services now, you never know what the future will hold. It is always good to be informed in case you or a loved one needs an advocate. No one can speak better for you than yourself. But do not worry, there is help along the way

One wish

“What is one thing you wish people could understand about your epilepsy?”

image1

One thing I wish people could understand is that the medication can be just as bad as having epilepsy. Antiepileptic Drugs (AEDs) help reduce the probability of a seizure occurring by reducing and alternating the excessive electrical activity (or degree of excitability) of neurons. Note that different AEDs work in different ways and have  different effects on the brain. Some AEDs may affect how neurotransmitters send messages or how fast the connection is. The medication I am on currently, as many of you may know, is levetiracetam/Keppra. The best part about Keppra is that they have NO idea how exactly this medication works on the brain – but it does not behave like a typical AED. All they know is that it forces brain cells to fire more slowly to prevent a seizure from occurring. Keppra is still, in comparison, fairly new and still needs more research.

Since my AED slows the brain down completely, I feel this is why my memory and comprehension is so greatly affected. It takes me a while now to understand things and this becomes extremely frustrating. I have trouble recalling things which can become embarrassing. I also have issues with getting words I want to say from my brain to my mouth – granted I did have two (well, three I suppose) events to the head that were considered traumatic and this could be why – I still feel that Keppra may be more to blame. I also wish people would understand that the brain fog we feel is real and comes along with AEDs and Epilepsy.


What is Brain Fog?

brain-fog

       Brain Fog is not a medically used term, but does sum up what most of us feel from time to time or on an everyday basis. Symptoms usually include: irritability, low energy or fatigue, trouble concentrating, forgetfulness, memory problems, anxiety, confusion, low motivation, mild depression, and trouble sleeping at night. I can definitely vouch and say I feel this way daily but not everyone will. AEDs effect everyone differently but it is good to research and know what to expect. Is it manageable? Yes, for some people. You just need to give yourself time and make proper accommodations. But if you feel that this is unmanageable, talk to your doctor. There may be an underlying cause or a better solution.


Stop and Think

betsy-allen-manning-leadership-speaker-author-organizational-development-expert-stop-think-observe-proceed

       Before you start bantering at someone who is taking longer than normal to speak, write, or do a task. Stop and think. Do you see a medical alert bracelet? Do you know this person personally? Haven you had a conversation with them? They might be someone with epilepsy or they might be someone with an illness or disorder that cause similar symptoms to the ones listed above. Please remember to be patient with people; for we all have our own journeys and battles that go unnoticed.

 


More Information

For more information or information on your specific medication, check out:

Feel free to leave comments on your experiences or about how AEDs effected people you know, love, or care for

Myths vs. Reality

These are real accounts that I have had people say to me.
I will apologize now for these people.

Myth: “You’re going to bite your tongue off!”
Reality:That I will not, and that you cannot. While I have bit a small piece off, my tongue is still attached and usable. It is physically impossible to bite your tongue off during a seizure.

Myth: “Epilepsy is contagious”
Reality: Epilepsy is NOT contagious; this is not the flu or chicken pox. This is a neurological condition.

Myth: “If you did not get seizures in childhood, you are not going to get them when you are older” 
Reality: Oh reallllyy. I started my seizures at 19; not quite a child. Seizures and Epilepsy do not discriminate. Any age and race can be effected. To quote the Epilepsy Foundation, “seizures start for the first time in people over the age of 65 almost as often as it does in children.”

Myth: “Should we buy a tongue blade or something to stick into your mouth?”
Reality: Epilepsy 101: Do NOT stick ANYTHING into a seizing person’s mouth. You could very easily chip teeth, create a choking hazard, cut gums, and if you are really trying to place it in there – break someone’s jaw. I was so amendment about this I voluntarily gave a little speech about it in my college lecture. Just roll us over to our side, loosen our clothing around the neck, rid objects that are around us, and if possible cushion our heads.

Myth: “So I should try and stop the seizure. Should I bear hug you?”
Reality:  Epilepsy 101 pt. 2: Do NOT restrain someone while they are seizing. You could cause injury to the person and yourself. Remember: we do not have control over our body due to a misfiring of neurons. We cannot just “stop” ourselves

Myth: “At least you won’t die from it” 
Reality:  While yes, death in epilepsy does not occur often; there is a condition called Sudden Unexpected Death in Epilepsy (SUDEP). Every year 1 out of 1,000 people die from SUDEP in those with controlled Epilepsy. Those who do not have their Epilepsy under control have a risk of 1 in 150. It is actually the leading cause of death in young adults with uncontrolled seizures (Find out more here: http://www.epilepsy.com/learn/impact/mortality/sudep). Those with Epilepsy cam even die from status epilepticus (prolonged seizure) which accounts for 22,000-42,000 deaths a year in the U.S. Aside from that, some of us who are allowed to drive can still have a seizure at any given moment and get into a car accident or drown. 

Myth: “Why don’t you just go on disability? You really should not work and you will never get through school.”.”
Reality: Believe it or not we can actually work and do not have to go on disability. I have worked the entire 5 years thus far having Epilepsy and attended college in the last 4 years. People with Epilepsy are not usually physically limited – unless it is directly after the seizure then we basically turn into cats and do not want to be around people and sleep…or maybe that is just me. Epilepsy may make school harder and more difficult due to medication and frequency of seizures, but it is not impossible. 
  
Myth: “You should never be left alone”
Reality: Actually I live on my own with my two children..granted yes, it is in the same apartment building as my parents but it is none the less my own apartment. Although, right after a seizure, there is some credibility that we should be monitored and depending on the person possibly even for the next few days but that all depends on the type of seizures, how the Epilepsy effects the person, and most importantly: what is best for the person and how they feel.

Myth: “You should never get pregnant. I don’t think your body can handle it”
Reality: Too late for that one. But it is also completely untrue. We just need extra monitoring, our medication levels need to be checked more, and our little ones need to be more closely watched. There has been studies to show that folic acid helps reduce the side effects of possible defects due to certain medications and I can vouch as a personal account that it at least helped me (although you want to start taking it before you get pregnant). While yes, the drop and rise and hormones may cause seizures for some – it does not mean they should avoid pregnancy. They just need to keep a very open line of communication with their doctors.

Myth: “If you do not convulsive, it is not a seizure” and “You cannot have two seizures in a row” – ER nurse
Reality: I never wanted to scream at a nurse so bad and she did not dare come to see me after I had my second seizure, right after she told my family and I that. First, there are over 40 different types of seizures and not all of them involve convulsing..I just got lucky to have those. Secondly, some people have up to 100 seizures a day (go ahead, look it up) never mind two. This is what really got me into educating everyone who asked me about my condition. Granted they got more than they asked for but I can only hope they passed that information on..and I hope that nurse learned her lesson and next time avoid a preventable accident. 

I could probably go on because I have heard A LOT in 5 years. Feel free to leave any questions you may have or things you may have heard below or just general comments! 
Education is key.

 

Print

 

  (Photo credit: http://www.efde.org/talking-about-epilepsy/)