“I Have Epilepsy and I Define IT.”

I recently read Bryan Farley’s blog post “Defining Epilepsy and Creativity” which was part of November’s Living Well with Epilepsy Blog Relay.

He talked about how people usually say, “I have epilepsy, but it doesn’t define me.”  Of course, we are more than our epilepsy.  This is the message that we want the world to know.  However, he changed this phrase to say, “I have epilepsy and I define IT.”  His rationale is that we as people with epilepsy should acknowledge our epilepsy and the role it takes in our lives.  Then, we can work to advocate for ourselves. 

Announcement: Epilepsy Support Network Holiday Party TOMORROW!

Tomorrow evening, December 11, 2015, from 6 – 9 pm, Pacific Time, the Epilepsy Support Network of Orange County will host their annual Holiday Party at the First Presbyterian Church in Westminster, CA.  The address is 7702 Westminster Blvd., Westminster, CA 92683.

It will be a good opportunity to socialize with others who live with the challenges of epilepsy.  There will be a dinner, warm drinks, a talent show, activities for teens, and to top it off, a visit from Santa!

Please RSVP by calling 714-916-0456 or emailing rsvp@epilepsysupportnet.org.  Despite the December 8 RSVP due date, there is still space remaining.  Don't be shy!

The Importance of Sleep and How to Achieve It

We all know that sleep is important, especially for people with epilepsy.  Lack of sleep can be a seizure trigger.  However, there are many benefits of a good night’s sleep which will make us all healthier, more energetic, and happier.

Epilepsy Blog Relay Twitter Chat

The end of November has arrived, and the Living Well with Epilepsy Blog Relay is drawing to a close.  They will host a Live Twitter Chat (#LivingWellChat) to celebrate the end of Epilepsy Awareness Month.

Thanksgiving

I went to the Epilepsy Walk at the Rose Bowl this past Sunday.  It didn’t turn out as I expected, but the day ended up well.  I truly realized how lucky I am to have such caring and understanding friends.  It was around 10 am when my friends and I were standing

Last Minute Announcement: Epilepsy Walk on Sunday!!!

This is a last minute announcement about an Epilepsy Walk this Sunday to benefit the Epilepsy Foundation of Greater Los Angeles.  It will take place at the Rose Bowl in Pasadena, CA.  The deadline for online registration is tonight, Friday, November 20, 2015 at midnight, Pacific Time.  You can also go on the day and register on-site.  The cost is $25.  Here are more details on how to prepare and what to expect at the Walk.

http://efgla.convio.net/site/TR/Events/General?pg=informational&fr_id=1080&type=fr_informational&sid=1012

http://efgla.convio.net/site/TR/Events/General?pg=informational&fr_id=1080&type=fr_informational&sid=1013

http://us8.campaign-archive1.com/?u=d10f514cd38c5975a67488bae&id=85bac185d9&e=e86b49c594

Epilepsy Blog Relay: Technology—Seizure Alert Devices

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

At the recent “Talk to the Docs” program that I went to, one of the topics of discussion was epilepsy technology.  Some of the doctors on the panel are trying to get funding to do research in this area, but so far have not been able to find any grant money.  This is just another example of how seriously underfunded epilepsy research is. 

Announcement: Epilepsy Support Network of Orange County “Talk to the Docs” Event

This Friday, November 13, 2015, the Epilepsy Support Network of Orange County will host a “Talk to the Docs” event for people with epilepsy.  It will take place at

Veterans Day

Today is Veterans Day.  We honor our military on this day in recognition of their service to our country.  Without them, we would not be the strong nation we are today.

However, as a country, we are failing in our duty to provide for them.  Many

Partial Seizures—First Aid

Partial seizures (otherwise known as focal, since they occur in a particular area, or focus, of the brain) are somewhat more complicated than tonic-clonic seizures, since they can affect any location(s) of the brain.  This causes various symptoms, such as chewing, picking at your clothes, wandering off, and speaking incoherently, among other things. 

Epilepsy First Aid for Tonic-Clonic (Grand Mal) Seizures

It is a good time to review the characteristics of a tonic-clonic (grand mal) seizure and what to do if you see someone having one.  Be informed, and you will be able to handle the situation if it comes up.

Resources

http://www.epilepsy.com/learn/types-seizures/tonic-clonic-seizures

http://endepilepsy.org/learn-more/about-the-epilepsies-new/#Seizure%20First%20Aid

Epilepsy Surgery in Panamá

A news flash:  A team of neurologists and neurosurgeons headed by Rubén Kuzniecky, a Panamanian-American from New York University Langone Medical Center, went to Panamá to operate on six children who had intractable seizures.  The children ranged from two to 15 years in age.  For them, this was their last option. 

Epilepsy Awareness Month—Living Well with Epilepsy Blog Relay

November is here, and that means that it is Epilepsy Awareness Month.  The Living Well with Epilepsy Blog is hosting an Epilepsy Awareness Blog Relay to celebrate the month. 

Happy Halloween!

Today is Halloween and many children will go trick-or-treating tonight.  When I was a child, this was my favorite holiday besides Christmas because of the candy I would get by the end of the night.

Although it is fun to go door-to-door all dressed up, it is important to take some

Announcement: Mayo Clinic Adult Epilepsy Webinar Monday, 11/2/15

On Monday, November 2, 2015, at 12:00-1:00 pm Central Time, the Mayo Clinic will host a webinar entitled “Adult Epilepsy: Common Clinical Issues and New Therapies.”    

SUDEP Awareness Day 2015: “Are You SUDEP Savvy?”

Today is SUDEP Awareness Day.  The Epilepsy Foundation and SUDEP Action are collaborating to raise awareness for SUDEP (Sudden Unexplained Death in Epilepsy.)  The theme this year is “Are you SUDEP Savvy?’

5th Annual Shark Tank Competition

The Epilepsy Therapy Project is soliciting entries for its upcoming Shark Tank Competition, to promote innovative ideas to help people with epilepsy and seizures.  The winner(s) will win as much as $200,000 and international recognition for their idea(s).

Announcement: Epilepsy Foundation of Los Angeles Support Group meeting

Tomorrow, October 11, 2015, the Epilepsy Foundation of Greater Los Angeles will hold its monthly support group meeting.  From 12 pm to 12:30 (Pacific Time), there will be an informal social, and from 12:30 to 2:30 there will be an Open Therapy/Discussion Group to discuss issues related to epilepsy.

RSVP is required.  Email Rebekkah at rhalliwell@endepilepsy.org.

The Health Care System—One Story

In the United States, I think it is fair to say that everyone has had problems with the health care system.  This ranges from setting up doctor’s appointments to getting prescriptions filled and covered by insurance.

Aaron E. Carroll, a medical doctor who has ulcerative colitis, wrote a column in the New York Times about his struggles to refill his prescription.

If you have any stories to share, please feel free to do so in the comments below.

National Prescription Drug Take-Back Day

Tomorrow (9/26/2015) is National Prescription Drug Take-Back Day.  It is a national program aimed at getting rid of unnecessary medications, drugs which may fall into the wrong hands. 

Poetry

Hi everyone,

I am taking an online poetry class and would like to share a poem that I wrote as one of my assignments.  I have been thinking about one of the frustrations with dealing with epilepsy. Please read it and see what you think.  I would appreciate any feedback you could give me, to improve it.

Thanks!

Types of Seizures--Absence Seizures

Epilepsy is very complicated.  There are over 20 types of seizures, not just the stereotypical tonic-clonic (grand mal) seizure  in which you fall, and your whole body jerks.

Here, I will discuss the absence seizure.  There are two types: simple and complex.

Announcement: Epilepsy Support Network of Orange County Monthly Meeting, September 11, 2015

This Friday, September 11, 2015, the Epilepsy Support Network of Orange County will have its monthly meeting in Orange, California.  The topic of discussion will be Epilepsy Surgery.  There will be two separate presentations, one for adults and one for parents.  They start at 7:00 pm, Pacific Time.  There are related events starting at 6:00 pm which you can find out more about on the website (right hand side under “Meeting Times”). There is also an adult social hour at 6-7 pm.

The location is CHOC Children’s Hospital, Harold Wade Education Center, Bldg 2, 2^nd Floor, CHOC West Building, 1201 W. La Veta, Orange, CA 92868.  Parking is $2.00 with validation.

To RSVP, call 714-916-0456 or email info@epilepsysupportnet.org.

More information is at:

http://epilepsysupportnet.org/html/events.html.

I hope those of you in Southern California will be able to come to the meeting.  I will be there!

Thank You!

It has been one year since I started writing this blog.  It is amazing that I have a worldwide readership.  I hope I meet your expectations.  I want to thank you for all your support and for continuing to read my blog.

Seizure Dogs

National Dog Day was yesterday, August 26, 2015.  This is a good time to celebrate and honor seizure dogs.  For many people with epilepsy, they serve as personal alarms, helpers, and service providers. They do many different things, depending on the needs of the person they are serving.

Read about how seizure dogs help people with epilepsy.

If you have experiences with seizure dogs, please feel free to share!

Resources

http://www.epilepsy.com/get-help/staying-safe/seizure-dogs

https://www.pawswithacause.org/i-want-a-dog/seizure-dogs

Medical Identification Bracelets

The other day, I randomly came across this post on the Medic Alert blog about how their bracelet helped save the lives of three different people who hadseizures.  It is a good reminder to us all that we will be in situations where friends and family will not be there to help during a seizure, and our medical identification bracelets will be the lifeline to getting the proper care we need. 

Back-to-School With Epilepsy

It is a new school year, a time of meeting old friends and making new ones.  A new year also means meeting new teachers and perhaps starting at a new school altogether.  It is a challenge for any child, but for children with epilepsy, it is even more so.  As a result, there are many things that parents need to do to prepare their child for school.  According to the Epilepsy Foundation, here are some guidelines to follow.

Announcement: Epilepsy Support Network of Orange County Monthly Meeting 8/14/2015—Epilepsy and Depression

This Friday, August 14, 2015, the Epilepsy Support Network of Orange County will have its monthly meeting in Orange, California.  The topic of discussion will be Epilepsy and Depression.  The talk starts at 7:00 pm, Pacific Time.  There are related events starting at 6:00 pm which you can look at on the website (right hand side under “Meeting Times”).

The location is CHOC Children’s Hospital, Harold Wade Education Center, Bldg 2, 2^nd Floor, CHOC West Building, 1201 W. La Veta, Orange, CA 92868.  Parking is $2.00 with validation.

To RSVP, call 714-916-0456 or email info@epilepsysupportnet.org.

More information is at:

http://epilepsysupportnet.org/html/events.html.

I hope those of you in Southern California will be able to come to the meeting.  I will be there!

Fashion and People with Disabilities

In conjunction with the 25^th anniversary of the Americans withDisabilities Act, National Public Radio aired a story entitled “From Canes to Closures, Designing with Style for People with Disabilities” about creating accessibility tools that are functional and fashionable at the same time. 

Americans with Disabilities Act— 25th Anniversary

Today is the 25^th anniversary of the Americans with Disabilities Act (ADA).  It was signed into law by President George H.W. Bush on July 26, 1990.  At the time, President Bush compared the ADA to the fall of the Berlin Wall and declared, “Let the shameful wall of exclusion finally come tumbling down.”

The law’s intent is to give equal rights and opportunity to all people with disabilities, seen and hidden.  Disability is defined

World Brain Day

Yesterday (July 22, 2015) was World Brain Day, and this year’s focus is epilepsy.  (I just came across the link today.)  World Brain Day is an initiative of the World Federation of Neurology, the International League Against Epilepsy, the International Bureau for Epilepsy, and the World Health Organization.

They have many good resources about epilepsy on their website.  I encourage you to take a look.

Thanks!

http://www.wfneurology.org/world-brain-day-2015

The Magic Number: 2-1-1

In her blog Epilepsy Talk, Phylis Feiner Johnson posted an entry about where to find resources on driving laws and how to access services if you don’t drive.  One of those resources is 2-1-1.  This phone number and website are extremely useful, not only for people with epilepsy, but for people in general who need access to:

--Healthcare

--Food

--Jobs

--Emergency/disaster relief

I encourage you to check it out.

If you have any other useful resources, please feel free to share them here.

Thanks!

Resources

http://epilepsytalk.com/2015/07/18/resources-for-when-you-cant-drive/

http://www.211.org/

Seizure Triggers

Pardon my not having posted anything for over ten days.  I went on a family vacation in Hawaii for the past week and just returned a few days ago.

The vacation was very pleasant.  We did many special activities, including seeing an Ulalena show, a history of the Hawaiian people in song and dance.  We also went to a luau and tried out many restaurants, sampling traditional Hawaiian foods.

However, there was one major thing about the stay in Hawaii that was inconvenient at best, and unbearable at its worst.  The weather was nothing like I have experienced in a long time.  Not only was it hot, it was extremely humid!

The heat and humidity got so bad that, during lunch one day, it caused me to have a cluster of seizures.  This made me realize how careful I had to be and to try to keep cool and hydrated.  Obviously, heat is a seizure trigger for me.

The Confederate Flag

Today, I will not discuss epilepsy issues.  However, I hope you will find this post interesting. 

In recent weeks, since the violence in the South Carolina churches against African Americans, there has been much discussion about, and action taken on, taking down the Confederate battle flag from state government institutions.   

The flag has a deep history and symbolizes many things to many people.  The fact that it has many negative historical associations linked to it, primarily that of slavery, is reason enough to take it down.

Happy Fourth of July (American Independence Day)!

Tomorrow is July 4^th—Independence Day in the United States of America.  This is a time to especially honor both active duty members of our military as well as our veterans.

They put their lives on the line each day to defend the freedoms we too often take for granted.  In this increasingly complicated and violent world, we depend on their skill, training, and knowledge to keep us as safe as possible.  Often, this means going into uncharted territories to carry out dangerous missions.

Talk About It For Epilepsy! 12-Hour Netathon on June 27, 2015, 12 Noon-Midnight PDT

Tomorrow, June 27, 2015, at 12:00 Noon Pacific Daylight Time (3:00 pm, Eastern; 7:00 pm, GMT—Standard), there will be a 12-hour online“Netathon” entitled “Talk About It For Epilepsy.”  This is to raise awareness for epilepsy and will be hosted by actors Greg Grunberg and Rick Harrison.  There will be many celebrities taking part in this event.  It is free, but you can feel free to make a donation to the Epilepsy Foundation.

For information about the Netathon, click here.

http://www.epilepsy.com/make-difference/get-involved/talk-about-it-epilepsy-presented-sunovion-live-hollywood-12-hour

http://www.epilepsy.com/release/2015/6/heroes-actor-greg-grunberg-pawn-star-rick-harrison-co-host-talk-about-it

New Device for Treating Seizures--AspireSR

I apologize for not writing lately.  I have been having a challenging time with my Vagus Nerve Stimulator.  I will have to check about modifying the stimulation level with my doctor.

That being said, there is a new version of the Vagus Nerve Stimulator called the AspireSR.  It provides stimulation in response to increased heart rate, which is known to cause seizures and sudden death in epilepsy.

There have been anecdotal success stories with it already, which is promising.  You can read about it here:

http://www.cbsnews.com/news/teen-with-epilepsy-gets-device-prevent-seizures-sudden-death/

http://epilepsytalk.com/2015/06/20/exciting-news-2/

http://www.epilepsy.com/article/2015/6/new-approach-vns-therapy?utm_source=Epilepsy+Foundation&utm_campaign=648211f7e2-Pro_News_6_17_15&utm_medium=email&utm_term=0_cf0feb6500-648211f7e2-12023081

I hope all of you are well.  Stay healthy!

Announcement: Epilepsy, Anxiety, and Mood Changes Live Webinar, June 16, 2015

On Tuesday, June 16, 2015, at 7:00 pm Eastern Daylight Time, there will be a webinar sponsored by the Epilepsy Foundation entitled “Epilepsy, Anxiety, and Mood Changes.”  It should be very informative.  To register, click here.

A $25 donation is suggested, but to register for free, you can enter coupon code EF2015.

http://www.epilepsy.com/article/2015/5/epilepsy-anxiety-and-mood-changes-live-webinar