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#NewConversationsDay About Epilepsy: Blog Post

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My name is Petrina Diamantakos. 

I’m 19 years old and am currently pursuing a Health Sciences degree at Western University. One year ago, I began working at Epilepsy Simcoe County (ESC) in Barrie as a way to learn more about healthcare charities, and how necessary they are for the communities they serve; and let me tell you, they are necessary.

 

Here at ESC, our mission is to help those in Simcoe County affected by epilepsy with advocacy, awareness, education, and support. 

I have learned that these things are easier said than done. Especially one in particular: awareness. 

The rest of our mission statement is directed more towards individual clients, whereas awareness is directed towards the entire Simcoe County population, which can make it a challenge. I’m writing this article to try to change that; so that people in Simcoe County can take away three key things; WHO needs to be talking about epilepsy, WHY it needs to be more than just people with epilepsy, and HOW to start the conversation.

 

I’ve already answered the WHO question – by directing this article at the population of Simcoe County – but it’s more than that. If you think your life hasn’t been affected by epilepsy, you’re most likely mistaken. With 1 in 100 people having epilepsy, there is a very high chance that you’ve encountered someone with the condition; that’s why everyone needs to be having a conversation about epilepsy, not just those directly affected. It’s not only a cause for people with epilepsy, it needs to be everyone’s cause.

 

As for the answer to the WHY, I’ve already hinted at that as well. Epilepsy is a very complex condition that has no cure, and can be very difficult to manage. For about 30% of people with epilepsy, medication will not be able to control their seizures. This is a huge reason why everyone needs to be having a conversation about epilepsy. At any time, whether you’re shopping, at school, at the gym, etc, there is a possibility that someone could have a seizure around you. When someone with epilepsy seizes, there are times when it may be necessary to call an ambulance (but not all seizures are a medical emergency). This means you – as a citizen – need to be informed about what to do to help that person during that time. Seizure first aid is an incredibly simple thing to learn, but not many people are aware of it unless they – or someone in their family – is directly affected by epilepsy. 

Setting safety aside for a moment, there are also many other issues surrounding epilepsy that need to be discussed including but not limited to; diagnosis, treatment, bullying, social life, transportation, and so on.

 

Finally, HOW can you start the conversation today:

  1. Educate yourself — Learning about epilepsy, seizure first aid, and reading articles like this one are all steps in the right direction for becoming more informed about. The more informed you are, the easier it’s going to be to discuss issues surrounding epilepsy and solutions to them.
  2. Be kind — Kindness is the best medicine, and it goes a long way. Kindness starts a butterfly effect, and the kinder you are, the more kind others will be. Currently, research shows kindness has amazing results on health – not only for the person receiving the kindness – but also to the person spreading it. It costs you nothing, but pays you back in spades.
  3. Be an advocate — Support those in your life affected by epilepsy, and try to help them in any way you can in your position. The healthcare system is not an easy ride, so stand by them in times when they need it. Being an advocate can also go beyond healthcare. You can also help by educating others, answering questions, or even supporting agencies like ESC, who advocate for you.
  4. Ask questions — If you are ever confused or curious about epilepsy, ask someone who has it or is educated on the topic. Most people with epilepsy want their stories heard, and told the right way; so what better way than to hear it come right from them.
  5. Listen to the answers — Too often people with epilepsy can be overlooked to stereotypes and stigma around the condition. When consulting someone about epilepsy, actively listen to what they are saying. They are a valuable source that should never be taken for granted.

 

To conclude this article, I want to mention that epilepsy is never a done deal; you can never be too educated or have too many conversations. New information about epilepsy comes to light every single day, and you can never learn to much. So I hope this article has given you a new perspective on how to approach talking about epilepsy. It’s not something that should be feared or disregarded; it’s something that needs to be embraced, learned, and taught. The conversation is never over, and I hope you won’t quit. 

I know I won’t.

(Leave your comments and questions below in how you will be starting – or continuing new conversations and awareness about epilepsy)

Epilepsy Blog Relay: Caregiver Fatigue

As seen in livingwellwithepilepsy.com

We all have someone who cares for us a great deal. For those of us with Epilepsy, or any chronic condition, there’s always a person or two who have extra responsibilities. Even if we are independent and can manage our epilepsy, there are those family and friends who look out for us daily and notice any changes. I certainly do this for my family and friends. Sometimes it is very tiring.

I never really thought much about the concept of caregiver fatigue until I became a therapist. I enjoy what I do and love caring for others. If I’m honest, though, it can be exhausting. For me, that took a long time to admit. In my caregiver role, I always want to seem strong in my mind, body, and emotions. That’s not realistic. We all have times where we’re strong and times when we need extra support. I was almost 2 years into my job before I finally could admit to myself that I wasn’t well. I gave so much of myself to everyone else (professionally and personally) and I was running on empty. I wanted to keep pushing through–I’m pretty stubborn like that. I was exhausted (more so than usual). I had no energy or desire to do anything other than lay on the couch or sleep. I cried a lot and my headaches increased. I knew I was neglecting myself but I felt extreme anxiety about taking any time away from the care I gave to others. Ultimately, my entire life suffered and I had to take a step back.

How I use self-care

For me, it meant giving myself permission to take Saturday mornings and watch a little more TV than normal. It meant extra long, hot showers to relax. I spent less time on social media and left my phone at home more often. I spent more time writing with a nice smelling candle right next to me. I started doing yoga and let myself be comfortable with letting a dish or two go unwashed for an evening. It took some support from others to get into a routine of relaxing…weird, right? I needed people reminding me to slow down. I learned that it is okay to take that step back. It doesn’t mean I care any less or I don’t have the same drive to help others. I wasn’t ignoring others and I wasn’t undermining anyone else’s needs. I was giving myself rest and using self-care, something caregivers don’t typically think about.

Signs of caregiver fatigue

Don’t be afraid to admit you have some caregiver fatigue. It just means you have to take some time for self-care. It will be okay. The world will not fall apart when you take a nap or spend a couple extra minutes in the shower.  As hard as it might be, loosen some of your control and delegate tasks to others. Ask someone else to fold the laundry and sweep the floor. Remember, there are people who want to support you! Make yourself aware of signs of caregiver fatigue and take a moment each day to notice what you’re feeling. Once you care for yourself, you are able to care more for others.

As seen in livingwellwithepilepsy.com

Camping with Epilepsy

As seen in livingwellwithepilepsy.com

Can you believe it’s [almost] July already?  For some of us, that means it’s the middle of summer! Camping is a popular activity during this time of the year.  Whether your family visits a campground every year or you go to sleep away camps, there are a few things you need to remember when camping with epilepsy.

Tips for camping with epilepsy:

  • Don’t forget your medication: I know this may seem like an obvious item to put on your packing sheet, but sometimes our medication makes us forgetful! Make sure your medication is the first thing you pack.  If it helps, use a pill box with the days of the week on it so you have enough to last you the whole week.  I always pack them in my purse because I take my purse with me everywhere, so there is no danger of me forgetting it!  It also helps me remember where I packed it when I need to take them later!
  • Make a packing list: A few days before you’re set to leave, write up a list of everything you need to pack.  In the days leading up to your departure, you can add things to the list that you forgot the first time.  When you begin to pack, you’ll know exactly what you need and can cross off items on the list as you go. I do this every time I travel and really cuts down on the number of things I forget.
  • Find out if there is a camp nurse: If you are going to a sleep away camp, chances are there will be a camp nurse on hand.  When you arrive, ask to meet the camp nurse so he/she knows who you are and you know who will help make this trip seizure-free.  Explain that you have epilepsy and, if you have triggers that may show up at camp (extreme heat, for example), make sure the nurse knows these triggers.  It will be easier for this person to care for you if he/she knows what type of care is needed.  If you’re not going to a camp with a nurse, make sure someone on the grounds knows your diagnosis, how to help if you do have a seizure, and who to call in case of emergency.
  • Camp Counselors: Some camps, like those put on by the Epilepsy Foundation, provide counselors for summer camps.  Depending who runs the camp, these counselors may have some ideas about responding to a seizure.  At Camp Frog, and others from the Epilepsy Foundation, counselors are trained in seizure first aid.  If your counselor isn’t trained, consider teaching them.  It won’t take long and then your counselor will be ready to help any time it is needed.  A camp nurse should also know seizure first aid, but the more people who can help, the better.
  • Know yourself: You are your own expert. You know what activities you can and cannot do, how your body feels, and if you need a break.  Don’t be afraid to speak up if you need to rest!  Going to camp can be so much fun, just remember to put your health first.

As seen in livingwellwithepilepsy.com

Epilepsy Blog Relay: Afraid to tell others about epilepsy

As seen in livingwellwithepilepsy.com

Due to the stigma, it is understandable that we who live with epilepsy are afraid to tell others about our condition.

People have thought it to be related to witchcraft or religious elements. The most common image of a seizure is the tonic clonic or, as they used to say, “grand mal”. This is where the person fell, writhed, perhaps and turned blue. There was also the misconception that people could swallow their tongues during a seizure. Unfortunately, these ideas still exist.

Epilepsy is a spectrum

Epilepsy is much more than this, however. There is a broad spectrum of seizure types and epilepsy syndromes, which are a combination of seizure types and other life factors. An example of an epilepsy syndrome is Dravet syndrome. This is characterized by myoclonic seizures and is a childhood epilepsy caused by a genetic dysfunction in the brain. There are severe developmental delays. CBD and the newly approved Epidiolex have been proven to be effective treatment in some cases. The ketogenic diet and VNS may also be helpful. Sodium channel blocking medications should be avoided, as they will exacerbate seizures.

There are even what I call “silent seizures,” ones that people don’t notice unless they know you have epilepsy. Those are the ones where you stare for a moment or two, absence or “petit mal”. However, when the seizures get longer and you lose consciousness, that’s when they pose a problem.

When is the right time to tell a friend?

It is best to tell the people you meet and will be establishing a long-term relationship about your epilepsy before an incident happens. However, this can be a sensitive issue. Finding the right time may be difficult, but getting it out as soon as possible is important. When it comes to personal relationships, either the person will accept you for who you are, or they will not. This can determine whether they are worth spending time together in the future.

When is the right time to tell work?

Regarding employment, I normally do not reveal my epilepsy during a job interview, as it may scare employers away. Unless I think it may work to my advantage, such as at an epilepsy-related nonprofit, I do not advertise myself with a capital E. During the job interview, they may ask questions like, “Can you do x task?” Or, “how would you accomplish x, y, or z?” If you were hindered because of your epilepsy somehow, but could do the job if you had an accommodation, mention that without mentioning the seizures.

When you are hired, that is the time to explain your situation and educate everyone you will be working with about your epilepsy, and about what they should do if you have a seizure.

I learned this lesson first-hand when I applied for a part-time job at an anthropological museum. I thought the interview was going well. Then the interviewer asked me if I had any questions for her. I brought up my epilepsy, then she made some excuse about my not being qualified for the job because I couldn’t drive. There was absolutely nothing in the job description about driving. I knew it was just because she was afraid of the epilepsy that she refused to consider me for the job.

Ultimately the decision is yours

In the end, however, your workplace should be friendly to people with disabilities. Otherwise, you will not be happy there. I was fortunate that I was able, later on, to work in a supportive environment, in a law library.

We, as the epilepsy community, need to be courageous and speak out. We must educate the everyone about the disease, or else ignorance will prevail.

As seen in livingwellwithepilepsy.com