Thursday, August 30, 2012

What Epilepsy means to me


Just a few months from now it will be a year since I have been diagnosed with Epilepsy and I have to say that without being selfish I have found a calling to help others with their diagnosis. I know I am early to Epilepsy and find it easy to understand but hard to swallow at time. .
This last 9 months has been a twister of a storm I never saw coming. I have lost approx 70 pds, I have found new ways to manage my stress, but regardless of all that, Epilepsy always finds a way to to strike you from an untrained cobra snake. You just never know when you’re going to go done or feel ok where ever you are and that’s the most worry some part of a having Epilepsy, you just never know.
I refuse to give into this disorder, and at time it wipes me out, but at the same time I strike back to take it and place in a situation to share the awareness and speak with others to share my story and them theirs.

I see such a weakness for proper support for this disorder that it boggles me to know that our Government and HealthCare providers look at Epilepsy as a disorder and not a disease so we are over looked on many levels. But if you have heard and read the facts I have seen, Epilepsy is a bigger issue than Heart Disease. So who are we letting in our Government/Insurance advisors run this?
It’s frustrating and I have only been diagnosed last November. I can’t speak of those that have lived with it for 5, 10, 20 years.

This has to change, our voice needs to matter and be strong.  Epilepsy isn’t going away until we reach out and get the funds to do the proper research and find a cure This shouldn’t be over looked and be a lower priority that other conditions/Disorders and so forth.
We have a voice too! One that matters, one that needs attention and one that is heartfelt.
We live day to day with this disorder and need a resolution. Who will fight for it? I know I will.
Join the cause to End Epilepsy in any way or for you can. Seek out our local foundation to make it happen.

I am 34 years old stricken with this,  am I am the least of concerns when it comes to our nations children.

Lend your hand, support, and assistance to help this cause become one that is effective and deserving.

-        ------  Jonathan T Barton

Sunday, August 26, 2012

Support, Educate, Advocate, Love with Epilepsy Today, Tomorrow and each day after tjhat!


What Is Epilepsy?

Epilepsy comes from a Greek word meaning "to hold or seize," and people who have epilepsy have seizures. You might also hear a seizure called a convulsion, fit, or spell.

Seizures happen when there is unusual electrical activity in the brain. Your brain cells are constantly sending out electrical signals that travel along nerves to the rest of the body.

These signals tell the muscles to move. During a seizure, a person's muscles tighten and relax rapidly or stop moving completely. Seizures come on suddenly, and people who have them cannot control their muscles while they are having a seizure.

If too many brain cells are sending signals at the same time, it causes an overload, and a person may pass out and shake all over. People who have epilepsy may have seizures only once in a while or as frequently as every day.


What's a Seizure?

Most seizures occur without warning, although some people have a funny feeling, an upset stomach, or a weird smell or taste right before a seizure. This is called an aura. Others find that certain things may bring on a seizure, like not getting enough sleep or playing video games.

Even though a seizure may look scary, it's not painful. During a seizure, the person may fall down, shake, stiffen, throw up, drool, urinate (pee), or lose bowel control.

Other seizures are less dramatic. Someone might just stare into space or have jerking movements in one part of the body. When the seizure is over, the person may feel sleepy and won't remember what happened.
Who Has Epilepsy?

About 2 million Americans have epilepsy, including boys and girls and people of all races and ages. Seizures can start at any age, but often they begin before age 15 or after age 65.

Doctors often cannot explain why a person has epilepsy. They do know that epilepsy is not contagious — you can't catch it from somebody. Epilepsy is not passed down through families (inherited) in the same way that blue eyes or brown hair are. But if somebody's mom or dad or brother or sister has epilepsy, then he or she has a slightly higher risk for epilepsy than somebody whose family has no history of seizures.
 
How Can Doctors Help?

If a person has a seizure, doctors may do some tests, such as a CAT scan, an MRI, or an electroencephalogram (EEG). A CAT scan or MRI helps a doctor look at the brain and an EEG records brain waves. Don't worry — these tests don't hurt at all. Blood tests may also be done.

All of these tests can help doctors try to find out what caused the seizure and if a kid might have mo
re seizures. But sometimes seizures are a one-time thing — half of the kids who have one seizure never have another one.

Most people who are diagnosed with epilepsy can control their seizures by taking medicines. As they get older, many kids with epilepsy get better and can stop taking medicine. For some kids, it may be difficult to get the seizures under control. A special diet or surgery may be needed.
Are Kids With Epilepsy Different?

People who have epilepsy may need to be careful in places where they could get hurt if they have a seizure, like a high place or in the bathtub. And they may not be able to do certain sports, such as boxing or scuba diving.

But other than that, most people with epilepsy can live normal lives and do what everyone else does. They can go to school, attend college, and get jobs. They can get married and have children.

However, even if epilepsy doesn't limit a person's ability, it can make a kid feel different. So, if you know somebody who has it, you can help a lot just by being a good friend.

Let’s keep Hope alive sharing your story for the world, for others, for those willing to help. Let's take what we experience, what we learn and educate others. 

My new goal is to do what I can to not be just an advocate, but lead by example. To take my dealings and not only heal from them, turn them into lessons and share with them. 

Everyone has their own thought's of epilepsy and whether it's a disorder or a disease, either or, it's there and we need funds for research. We need support for our children, our siblings, our parents, to our grandparents. We need accessibility to resources to the Epilepsy Foundations. We as human beings have a sound soul to reach within themselves and share what we can in any form-we can. To be leaders, to be educators, to be health professionals. 

Not am I only passionate about Advocating for Epilepsy, but I also contribute for breast cancel, Autism, Pancreas Cancer, CHP Association and the Veterans association. I can't do so much alone, but could you imagine if each person contributed just a $1 or $5 how much that can help all these foundations for what is needed. 

From the bottom of my heart ask for you to contribute to my Walk to End Epilepsy for 2012. I was diagnosed last November and am still learning to deal with having this condition, so it my family and friends. It affects everyone around me. So I can only imagine how others deal or handle it. I am very open with my epilepsy and how it's affected my life and I will continue to do so

Last April I put a team together for the Sharon Walk Ride Run 2012 for the Epilepsy Foundation of San Diego. We started with raising a goal of $500 and ended up raising a bit over $3500. It was remarkable and the most rewarding thing I have ever done. So Team Barton is doing another 5k in October at  the Rose Bowl and we are looking for support to reaching our goal of $3,000.00 My precious daughter alone has already raised $300 and is doing everything she can to continue. We are asking for more friends & Family to join our Team and by doing so, you will be allowed a page on the website to set a personal goal under Team Barton. By doing so this will allow us to widen our reach for contributions

If you would like to join our team or contribute, you can go to the following link: http://give.end-epilepsy.org/goto/TeamBarton



We thank you for your support and encouragement, and always remember as I do everyday, keep hope alive!!!


Note: Some of the information on this blog was from https://www.facebook.com/epilepsy.nation. They are a great resource, please check out their Facebook Page

Thursday, August 23, 2012

Today's a new day

So after everything that happened yesterday, I ended up having another gran mal seizure last night. The last thing I remember is sweet Emilee tucking me in as I went to bed.

I got up at 3:00am and started to get ready for work, and quickly realized that I am on leave. So I get to call EDD today and make some other phone calls. I get to call EDD at 8am and make an appointment to see my nuro to sign my LOA paperwork.

Going on leave is financially going to screw us again and now I don't know if we are gonna  be able to go on our trip to Arizona on Labor day weekend. :(

So I am working in my computer lab right  now and watching Netflix. I guess that's going to be how my days are for awhile. By the way, Piranha is a horrible movie!!!!

Today's a new day, so let's see what it brings! Today's a new day, so let's see what it brings!

Wednesday, August 22, 2012

LOA - What????

So this morning started out interesting. I get a phone call from our 3rd party vendor that handles my companies LOA's and FMLA's.

I was in the process of getting my FMLA paperwork finished and apparently they never received my 2nd fax and they called me to informed me me that my request for an FMLA request was denied.



As a result I have been placed on Medical Leave of Absence and have to have a bunch of paperwork filled out again. File with EDD, Call my HR Department  and get my short term disability information as well. I am gonna have to jump through hoops this next week to get all these files together and get them to my company and EDD filed asap cause we all know how long that takes.

So this I am hoping the time off will be a stress free and restful one so I can leave this on going storm behind me.

So between the new dosage of depakote and sleeping pills, we stii jowmtj

Tuesday, August 21, 2012

Local Business's Assistance Needed - Epilepsy Awareness


To whom it may concern, 


My name is Jonathan T Barton. Last November I was unfortunately diagnosed with Epilepsy at the age of 33. Since then I have been looking for support in Riverside/Jurupa Valley and have found next to nothing.  This was discouraging as I have been a member of this community for years now. I did find a foundation in LA & San Diego. But being someone that cannot drive with my disability, it’s been tough getting to places. I am a father of 3 wonderful children and have a loving spouse and together this has changed all our lives.

This why I am coming to you, last April I did a 5k walk for the San Diego Foundation and this October I am doing one for the LA Foundation. Riverside County doesn't have their own Epilepsy Foundation like San Diego or LA. In April my Team (Team Barton) raised a bit over $3500.00 and we are hoping the same if not more with the LA Chapter. 

So there are a couple reasons why I come to you. 

1) We are looking to start a permanent foundation in Riverside County. How awesome would that be if in your own time we could have this foundation for our local families who are looking & needing this support? We could also have booths setup at the event and will be happy to hand out flyers for your business.

2) Team Barton is looking for small/large local businesses to sponsor/pledge us to raise money to reach our goal of $3000. 

3) What a great way for Jurupa Valley to get involved in something so meaningful. 

When I was diagnosed, it took awhile to process and accepted that I will life with it forever. . My 12 year old daughter was the one that got me out of bed and told me that I need to stand up and do something about it. Well, since then that's what I have been doing and I am asking for your help/support in any way you can. 

Team Barton has a site you can go to and pledge us and our research more on the cause. I know that I will have to deal with this for the rest of my life, but today's children are tomorrow's future and the support we give them will only allow more open doors in tomorrow's future. 

Here is the link to our Team Barton for “The Walk to End Epilepsy 2012” at the Rose Bowl in October.



Team Barton asks for a small donation/contribution for this cause and look forward to bringing a Foundation to Inland Empire. A small donation will go so far with helping children with Epilepsy, Research for a cure and care. Any donation you do as a busniss is a tax right off and that information will be available.

Thank you so much for your time, This is something I am very passionate about and will do anything I can to help those with Epilepsy.

I look forward to hearing from you.

Sincerely,

Jon Barton – Jurupa Valley Liaison of Epilepsy Awareness
Phone: 951-847=8157
Email: Jonathantbarton@gmail.com
Blog: Epilepsy Found Me at 33: http://epilepsyfoundme.blogspot.com/





Sunday, August 19, 2012

Update - Intense Headache

Don't you hate it when you wake up abruptly thinking you overslept to find out you have only been asleep a couple hours and you have a horrible headache,

At least I have time to take something and go back to bed for about 5 hrs.

***********************************************************************************

Update, so I woke up late this morning and really out of it. I told Em that I was completely sore and she than told me that I had another Gran Mal seizure while I was asleep and that I had some petite ones while we were on the patio trying to relaxing and it was either me suddenly falling asleep or having a very small seizure. I don't remember any of this.

I have been having the hardest time sleeping and my nuro suggested I try over the counter stuff and that makes me feel hung over in the morning and only gives me like 2 hrs solid sleep and than it's back to a restless night.

So my primary prescribed me some meds to help me sleep. So I will try those tonight and see how these work. He prescribed me Dalmane (flurazepam) which is one that works well with someone on seizure meds. So we shall see huh!

 Wish me luck and good sleep!!!!

Saturday, August 18, 2012

Taking it easy...

So this week started out strong and than came to a point that all my energy was drained. One night this week I didn't sleep at all and went into work and had to leave after 4 hours. Later that day I ended uup having a seizure during lunch.

I slept for the rest of the afternoon, got up for dinner and than went back to bed. I woke up about 2am wide aware and really sore. I went to work and felt allot better.

Thursday I felt very fatigured again and felt as if I barely slept. I talked to my HR department and was sent home for the remainder of the day. While on the train home I had a small seizure and was pretty out of it. Again these are happening. I get so tired of the little sleep I get and I could tell it was starting to take it's toll on me. HR expressed that they would like to see my take sometime off just to relax and get some much needed rest.

I have been on my new dosage now for a couple weeks and it seems that my seirzures are starting to spread farther apart which is a good thing. I think my body is still getting used to them.

I can't believe how much energy Epiilepsy can take out of you both physically and mentally. I haven't been getting good sleep lately and even tonight is an example of that. It's 1:30am and I am wide awake even trying some sleeping pills my doctor recommended. I think it's time for a 2nd opinion. To get a different perspective on my Epilepsy and maybe a Nuro that specializes in Epilepsy. It never hurts to have a 2nd pair of eyes on things. Especially since it's been 8 1/2 months since I have been diagnosed.

My commute and long days away from home are starting to get to me big time.

Sunday we are going down to San Diego for the San Diego Epilepsy Foundation for a Beach luau and it should be allot of fun and a nice day to go down the beach. Here's the info below.



Not sure what we are are doing tomorrow. But since I am still up I was able to wipe 5 hard drives that I have been meaning to get done and do some work on my own laptop.

Well, I guess I should try to go to sleep. Have a great weekend everyone!!!!

Monday, August 13, 2012

Health Update

So it's been a whole since I posted an update. It's been an interesting last couple of weeks. 2 weeks ago my body hit rock bottom and I felt like I reverted backwards with my seizures. In a matter of 4 to 5 days I had about 7 or 8 seizures and my body rejected food and water. I lost about 10 pds in about a week.

I had gone to the ER to find out that I was dehydrated my seizure meds weren't being processed by my body. I went into a funk again and anyone that suffers from Epilespy probably can relate.



We went to my nuros for an appt to see what's going on. My doctor doubled my depakote and for 2 days after that I pretty much sleeper the whole time because I was so out of it. I went almost 5 days without eating.

After 5 days with the new meds I felt better than I have in months. I felt my energy come back. Since than I have only had to seizures and I am doing loads better.

I am truly learning to live day to day, as this affects me in so many different ways. Yesterday was a scary day as I learned to not swim alone anymore. So I was laying out in our mini pool(our spa we use as a pool during the summer) I was laying on a floating tying to get some sun and the next thing I know I am coming to as Em was trying to see if I was ok. We think I had a seizure while laying there. Sure glad Em came home when she did, cause I could have fell in and drowned. Note to self, never go swimming alone again. At least I got some sun and didn't get sun burned. Thanks Emmy for coming and checking on me. God knows how long I would have been out there If she hadn't come home. Thanks Emmy!

Photo Credit - Emilee Fox

May the storm always be behind me and not rain down on me!!

Over all, I am doing much better than I have in months but still have a ways to go. Thank you all for the continued support. Our family forever thanks you.

Walk to End Epilepsy 2012 - Team Barton needs your help!


Dear Friends,
Please join me by registering as a member of Team Barton at the Walk to End Epilepsy.
I am participating in the Epilepsy Foundation of Greater Los Angeles? annual Walk to End Epilepsy on Sunday, October 28, 2012 at the Rose Bowl in Pasadena because I have epilepsy and hope to have your support or have you there with me!
To join Team Barton you can go to: http://give.end-epilepsy.org/goto/TeamBarton
If you would like to sponsor me you can go to: http://give.end-epilepsy.org/goto/JonBarton
Seizures can strike suddenly and unexpectedly at any point in one?s life. Seizures steal moments and memories, can change lives, impact development, affect learning and can even result in early death.



About 360,000 Californians have epilepsy.
About 24,000 more will be diagnosed in 2012.
One could be you or someone you love.
For over fifty years, the Epilepsy Foundation of Greater Los Angeles has provided support to the nearly 160,000 individuals with epilepsy and their families in our region. The local Epilepsy Foundation chooses to fulfill its mission by leading the fight to END EPILEPSY and the burden of seizures by focusing on care, advocacy, research and education.
Your involvement helps support care, advocacy and education, today, while investing in research and hope for tomorrow.
Please join me and register as a member of Team Barton. If you are not able to join my team, please consider making a donation supporting my participation!! Ever little bit counts.
One Day At A Time,
Jon Barton, Captain of Team Barton


Thank's for the memories, it's now over

So today marks the ending of a goal I have been trying to reach since 2003. I have spent thousands of dollars, frustration and to a degree hate. I am glad to say I don't have the hate anymore but the one thing that remains as I close this chapter in my life is that I have a beautiful daughter through this. Today my divorce is finally official and over. I have spent so much to get this accomplished and lacked the financials at times, but it's over. My daughters Mom and I will always be friends. I agree that it's taken way to long to get this done and it hasn't been far to Em, but now it's time to look forward. Out of this I finally have 50% joint custody which is a dream come true for me.

"Forget Me Not" as we move forward in our lives and bring on the good for both of us.