Coping with Epilepsy

Today, I had planned a very special post; however, with a turn of events throughout the day I find myself wanting to share some good news to you all that are interested about this. As you know my husband is Epileptic and I can only work from home. Yesterday, I accepted a position as an Editor the Guardian Express. I submitted the story and it has made front page. I wanted to share this with you not to gloat but, because the story is Coping with Epilepsy. A great fit for the blog. 


As of now my article has been placed on the front page, as I stated I am letting you know this because I think it is really a good starting point for Coping with Epilepsy. 


If you would like to read more about it please follow the link.

"Coping with Epilepsy"

Editor: Ashley Chapman Link: http://guardianlv.com/2013/04/coping-with-epilepsy/

My Spouse just had a seizure now what?

What to do during a seizure and what not to do.

As you have learned a seizure is where a person’s brain is misfiring the signals correctly causing the person to convulse or have uncontrolled movements with their body. These movements are absolutely uncontrolled and may look like a person rapidly shaking their arms or legs, and in some cases their entire body. When a person has a seizure every muscle in their body tenses like a rock and some roll into almost a fetal position shaking uncontrollably. Many times a seizure will result in loss of consciousness, this may result of a complete collapse or staring into space. Once the person comes to they may have no memory of the event. Fainting spells and excessive fatigue is not uncommon as well as very sleepy. The type of tiredness you would typically get if you took a very strong pain pill or shot. When a person is having a seizure it is not uncommon for odd and even scary sounds to come from the person. Today, I want to go over one of the most important aspects of being married to someone with Epilepsy, What to do during a seizure. Some of you may already know how to react and what to not do, while others of you may really not know about this. I want you all to be aware of these as you never know when this may come in handy. I will also cover some myths about a person having a seizure that needs to be facts.

Let us begin with today’s great post!

 

What You Should Do if you see someone having a seizure

First, Stay Calm. Trust me I know this one sounds very hard to do and it takes a lot of practice but staying calm means you react the way you should then.

Start Timing the Seizure. You need to know how long the seizure lasts, seconds, minutes, etc. This is very IMPORTANT!

DO NOT try to revive the person or stop the seizure! You are honestly not doing anything but harm when you do this.

Protect the person from injury. If a seizure occurs on a concrete ground, floor, or hardwood flooring, don’t just stand by and let the person bang their head against the floor that will cause more complications. Jump down there, put their head in between your lap, put pillows down, blankets, anything soft but the hard floor.

Turn the person on their side! This is VERY IMPORTANT! Turning the person on their side allows for the saliva and other fluids to drain out as the person has no control of their mouth or throat during a seizure they cannot swallow this. Turning the person on their side as quickly as possible allows their air passages to stay open!

Rare occasions. If the seizure seems to last more than 5 minutes or is followed by another seizure seek medical help immediately.

After the seizure. Do not yell, scream, or be frightened the person that just had the seizure will pick up on this immediately and that can cause another seizure. Be calm, talk to them gently, let them know they are okay, reassure them as much as possible. This helps to bring them back.

As questions that you know the answer to such as: Do you know where you are? What day is it? What Month is it? Do you know your SS#? Your Phone Number?

These questions help you to immediately gauge the after affects of the seizure.

 

Myths

• A person will NOT swallow their tongue if they are on their back.
• You should force something into the mouth when someone is having a seizure. NEVER!
• You should use restraints or hold the person down while they are having a seizure. NO!
• Epilepsy is NOT contagious.
• Seizures alone does not mean the person is disabled. Unless it is Severe Seizures.
• Epilepsy is a curable disease. No!
• Epilepsy is Rare. Again, No!
• You cannot die from a seizure. Yes, a person can it is rare but I will touch this in a moment.

 

Now as you can see there are many myths out there about Epilepsy and I hope this has cleared it up. I want to touch briefly on the last one as I stated I would. As with any medical condition like heart disease, Epilepsy can become fatal! Now I don’t want you to worry yourself sick over this one, please don’t its not my intentions here. Those that have seizures and become fatal have a very severe form of Epilepsy. Not every person has this type of Epilepsy known as Epilepticus.

 

Some background information now.

They say your first year of marriage is the worst and I honestly believe it now. In 2006, we had to deal with multiple seizures very uncontrolled, a miscarriage, my grand father passing away, his family disowning him because he fell in love with me, and many changes. By the end of 2006 Buddy’s seizures were slowly dissipating and I finally started feeling better. Up into 2007 Buddy went for 8 months without a grand-mal seizure. (A grand-mal seizure is where you shake your entire body and it can be really bad on the memory afterwards). Late One Night, Buddy had a major seizure again. I typically never freak out, but with it being so long it was a shock. I had to hold in my fear, tears, and trimmers, long enough to do my job. I flipped him on his side, made sure he could not hit his head, and timed the seizure. It seemed to never end. The constant need to comfort him aroused within me and I was once again back to the caregiver I had been for so long. His seizure did last a few minutes a quite unusual time frame for his seizures to last but, I wrote it off as him not having a seizure in so long. A few nights nothing happened then seizures more and more frequently started popping up. I realized that it was fast becoming a frequent ordeal again. More trips to the Emergency Room, sleepless nights, and more. Finally, I found a Neurologist that agreed to see him. Surprisingly the problem with all of this had been his Depakote level dropped too low. Once they upped his medications back to no seizures and a happy life.

I will tell you from personal experience, that those moments when your spouse or loved one has a seizure it is very difficult even excruciating to keep your fear under control. You want to scream, cry, curl into a ball, and more because at that moment your absolutely helpless. Nothing you do will make the situation better, nothing you say will take away the rest of the pain, nothing can be done to make you feel better and it is those moments of not being in control and knowing the outcome that terrify you the most. At that moment your faced with doubt, fear, worry, and frightened moments. No matter what you try to do those feelings are always there.

I will tell you it does get easier as the years go by as you learn how to cope but, when you are first beginning you are going to feel every type of feeling and afterward your going to feel guilty for feeling that away. Its honestly how it works. I think really the hardest aspects to deal with are the after affects. Memory loss, frustration, tiredness, and aggravation because they have no idea what just happened or why they cannot remember something important. In those moments the only thing you can do is be there for them, tell them you love them, and support them. Help guide them into a better tomorrow and let them know your not going anywhere.

Honestly, cowards walk away when things get tough and believe me taking the cowards way may seem easy and the best solution but, marriage is not easy and never will be. Love is always complicated, never pure and simple, but love is something worth fighting for. Love is a precious gift given to us that should be cherished and protected forever. If you really love someone you will stick by them no matter what happens. I know I love Buddy, and I know that love means trying times, hard moments, exhausting laughs, and memories to cherish for a lifetime. I also, know that means I take him as he is with Epilepsy or without. His medical condition does not define who he is or our marriage, it simply makes things more trying. I love him with all my heart and no matter what will be there for him.

Remember, when your struggling, tired, and ready to walk away that life is no better outside of the relationship. Remember that he/she loves you but cannot help what was given to them. Most of all Remember You Are Not Alone in this I know exactly how you feel.

Until we meet again my wonderful readers. Remember hitting the Follow this blog button to your left allows you to receive updates every time we post a new comment.

What is Epilepsy and the affects

In medical terms, Epilepsy is a neurological condition that affects the nervous system, which is also known as a seizure disorder. Many people have never heard of Epilepsy which causes seizures, for that reason I am going to spend a few brief moments explaining what a seizure is both medically and non-medically.
Medically speaking, Seizures occur when the electrical system of the brain malfunctions. In another sense, the instead of discharging electrical energy in a controlled way the brain cells keep firing. If only part of the brain is affected, it may cloud awareness, block normal communications, and produce a variety of undirected, uncontrolled, and unorganized movements.
Simply put a seizure is when a person is jerking or moving with no control what so ever, this typically happens suddenly with little to no warning. The jerking can affect all of the body, some of the body, or be very localized, a arm, leg, head, etc. There are even cases where the person has no jerking at all they just stare off into space and once they come back to normal forget everything.
Seizures have many different names that specialists have given them some of which are, Generalized Seizures names: Absence, Atonic, tonic-clonic, myoclonic. Partial names: Simple and Complex seizures, gelastic seizures, dacrystic seizures, non-epileptic seizures, and status epilepticus.
Medical Information was provided today by the Epilepsy Foundation. To read more please Click Here!

Some more Background Information:

As you all have read previously, my husband was diagnosed at the age of 16 with seizures; however, because there has been no Epileptic Specialist on his case we only know he has seizures. My husband and I met way back in 2004, dated on and off, and made it very serious by the very beginning of 2006. By March we married. I was very uneducated about seizures, what they were, what it looked like while a person had a seizure, what to expect afterwards, and honestly had no clue to nothing then. It was a few weeks after we married and Buddy began having seizures. At first it was just during the nights it stormed. I was able to realize that these seizures occurred after it stormed typically if the storm produced bad lightening. So, I connected lightening with causing a seizure.
One day I found the nerve to ask him about lightening and seizures, just to see if I was crazy and he admitted that any flashes of light could trigger a seizure. Immediately I ran out and bought the heaviest curtains and if I couldn’t find any heavy enough I used comforters and sewed them together to cover every window in our small apartment. From that day on no more seizures from lighting. Thank goodness for learning that.
A month after we married, we bought our first home and moved in, again came the having to close out the outside to prevent lightening from coming in. Neighbors looked at us like we were crazy and honestly thought we were doing something illegal. As a matter of fact, the landlord where we had our mobile home at stopped in one day and asked us why we had it so blocked off from everything with our windows. I kindly asked him to sit down, and I began to explain the complications. “My husband has Epilepsy, if a storm comes through producing lightening he will have seizures, because of never knowing when a storm will hit here, its more simple just to keep it up all year round and protect him as much as possible.” The landlord asked if he could share our story with the neighbors as they were all concerned we had something illegal going on (quite shocking), but I agreed so people would not have police at our door steps every day questioning us and so forth.
For the longest time in 2006 Buddy was able to work and hold a job quite well. He was actually a Farm Hand for one of the local farmers as he had experience in this field it was easier for him to work it. When mid-Summer hit everything went down the drain and fast. Our bedroom floor fell in and we had to replace it ourselves. I only knew how to handle a hammer, had no idea how to use a saw, or what to do about measuring. I left all of that up to Buddy. At this time he was working long hours upwards to 12 and 16 hour days at the farm. Then he would come home and try and work on the floor some before passing out. That week became the worst in June. Buddy began having seizures every night, no matter what. Every night it was like clock work, wake up by 2am, wait for seizure to stop, get him dressed, help him walk to the car, put him in, drive the 15 minutes to the hospital and stay for 4 to 8 hours for testing, EEG’s, Cat Scans, MRI’s, and blood work.
By that Friday, he had lost his job, our floor was not getting fixed, and worse of all Buddy forgot almost everything. Buddy had forgotten how to: shave, feed himself, cook, get a drink of water, shower, how to dress himself, tie his shoes, everything. At that moment I went from being a wife to being a caregiver. Some things came naturally to me as I had always helped my grandparents out, other things were second nature, while others were down right terrifying.
Loss of memory was not uncommon for him, but to have lost so much in just a few seizures I was terrified. I had no idea if his memory would ever come back, if he would remember how to do anything again, top those fears off with knowing our bedroom floor needed to get done. I was only 19 years old and barely knew a thing about living or being married, but I learned real fast.
Buddy looked at me one day and said, “I need to shave but I don’t remember how”, instead of thinking I said “its okay baby, I know how to shave you, I will teach you”. I sat him down at my level and gently shaved him. I slowly taught him how to shave, to cut his food up, tie his shoes, and how to dress himself, I did everything a wife should. As I did all of this I remembered the vows we took, “For better or For Worse, In Sickness and In Health” well this was definitely worse and in sickness.
Sometimes the problem is with people they only see what it does to the person who has Epilepsy but they don’t see what it does to those people that have to take care of them. I had to have a crash course in how to handle the daily needs of both the house, animals, and my husband. If that wasn’t enough I had to figure out how to use a circular saw and cut board, measure to the correct size, and fix a bedroom floor myself.
Did I feel tired? Angry? Hurt? Upset? Lost? Hopeless? Definitely. I will tell you though through all of this the one thing that kept me pushing on was remembering that I married this man because I love him with all my heart. I gave him my heart and soul he gave me a home for my heart. A place to feel safe, warm, loved, and comforted. Even though at night, all I wanted to do was crawl into bed and cry myself to sleep I constantly remembered I loved him and he loved me. Though we hadn’t even been married 6 months I knew that no matter what we would get through it.
Having fears, anger, frustration, anxiety, panic attacks, and moments of wanting to scream was just some things I had to deal with regularly during this week. I know that someone somewhere has felt like this too, maybe you have felt like this. I strongly believe that had it not been for those moments of worse, sickness, trying, and prevailing we would not be as strong as we are now.
Remember as you come back to read more, your not alone that I too have felt like you many times. That I have struggled not only as a person but with a marriage, and my husband. I have struggled to understand why such a good guy could be struck down with such a disease, I have questioned the unthinkable like you have. I have worried about what tomorrow would bring, and I have fought to keep going. Remember “Your Not Alone”.

Come back tomorrow for another series of blog posts and learn more about us and Epilepsy.

Welcome to My Spouse Has Epilepsy

Welcome to My Spouse has Epilepsy

Epilepsy Affects more than 3 million Americans with nearly 500 new cases daily. Anyone can suffer from Epilepsy from a baby to a senior citizen age is not a factor with Epilepsy. 1 in 10 people will develop Epilepsy at some point in their life and 1 in 100 people will suffer from a seizure at one point. Epilepsy is widely known but many people are severely lacking in education. Spouses and Family members find themselves more alone than ever when dealing with a loved one that has Epilepsy. 

This Blog is Dedicated to Every Spouse and Family Member that has a loved one diagnosed with Epilepsy.



Some Background Information

My name is Ashley I am 26 years old and my husband is Buddy he is now 29 years old. Buddy was diagnosed at the age of 16 with Wolf Parkinson's White Syndrom as well as Epilepsy. For the first few years of his diagnoses everything seemed to be going perfect. His seizures were controlled and happened very rarely maybe 2 to 4 a year. When we married I was 19 years old he was 21. His seizures seemed fine for a bit and then everything started going down hill from there. 

A few years ago he was diagnosed with Dandy Walker Variant Syndrome something any neurologist should have picked up on years ago, but they did not. So to break down a few things for you. Wolf Parkinson's White Syndrome caused an extra piece of tissue to grow on his heart, he needed an ablasion which corrected this condition, however, the Dandy Walker Variant was a birth defect where not all of the brain developed and this condition will never change. Epilepsy has been a major factor in everything, our lives, daily activities, struggles, finances and more.

By 2009, Buddy no longer could hold a job, his seizures were completely uncontrolled and unpredictable. Not to mention the memory loss he suffered was quite severe. I finally found up the courage to file for his Disability as by now I was taking care of everything. As a wife married to a person with Epilepsy your role has a new meaning.

I was no longer just the wife I was the driver, cook, housekeeper, shopper, appointment maker, errand runner, animal taker, caregiver, and the only source for an income. I was given the total responsibility of having to take care of paying our bills, putting food on our table, clothes on our back, and more. At just a young age a task like this can be very frustrating to say the least.

April 4, 2013 we had our disability hearing scheduled for 10 am. At 8:30 am the phone started ringing off the hook, I jumped up over slept again. Buddy was so stressed he was having seizures on a regular. I didn't bother to pick up the phone, ran straight to the bathroom knowing we only had 30 minutes to get ready and walk out the door. I pulled on my good clothes for court as I knew I was going to testify today. Phone kept ringing. We share the phone with my mother who is our neighbor so she picked up immediately. Took only seconds and she buzzed down saying our attorney was on the phone. 

First thought, Crap we lost, now we have to start over again. The attorney clearly stated, "Go back to bed WE WON!" Our wait was over, but the struggle, changes, difficulties, and more never ends. 


This blog will start from 2006 and bring you to the present allowing you a chance to see the difficulties, struggles, frustrations, and the life of a person diagnosed with Epilepsy as well as the Spouse that handles it all. 

This blog is dedicated to every person who has the same situation or similar. We want you to know You Are Not Alone!

Please Subscribe to our blog at the left of the post. You will then receive updates regularly of when we add new content. 

I hope this helps a spouse out there on the edge and fed up with everything because as you will see I have been there too. This is a struggle I have had to deal with for 7 years but I can honestly tell you it get's easier or least becomes a normal routine able to deal with the stressors.


I look forward to hearing from all of you. Please Feel Free to Comment Any time!