Happy Holidays!

It is that time of year once again!  It is hard to believe the holidays are upon us once again!  I hope you are enjoying yourselves with family and friends.  This should be a joyous time of celebration for all.

Epilepsy Foundation of Greater Los Angeles—Upcoming Events

There are going to be two upcoming events in December hosted by the Epilepsy Foundation of Greater Los Angeles.

The first is a Workshop/Social at the Los Angeles Zoo on Saturday, December 10, from 10 am to 5:30 pm.  Registration costs $10, but scholarships are available.  They will have Educational Sessions and Art Therapy, as well as time for socializing.  This is a good opportunity for families to connect and share experiences about their epilepsy.

Thanksgiving Thoughts

I hope you all had a very Happy Thanksgiving!  I had a quiet but special weekend with family, with the traditional trimmings, but instead of turkey, we had ham.  Asparagus, mashed sweet potatoes, carrots, and broccoli. 

Election 2016

The election results are coming in right now and it is very scary.  Donald Trump is possibly going to become president of the United States.  I have been trying not to think about this, but it is difficult not to.  A Donald Trump presidency would have terrible implications for people with disabilities. 

He does everything for his own self interest and does not care for others, no matter what he may say.  He is a good marketer, with a good slogan.  This is how he appeals to many disaffected voters.  However, he has offended people of all types (minorities, people with disabilities, etc.).  His policies would ruin our country and set us back to the Dark Ages.  People with epilepsy would be sent back into the closet.

I truly fear for us.  We need to elect Hillary Clinton.  She will fight for us.

http://www.forbes.com/sites/emilywillingham/2016/08/18/between-trump-and-clinton-only-one-shows-clear-symptoms-of-being-unfit-for-the-presidency/#3181f8995d90

Announcement: Epilepsy Open Therapy/Discussion Group, 9 Oct. 2016, Los Angeles

This Sunday, October 9, the Epilepsy Foundation of Greater Los Angeles will have its monthly support group meeting.  The informal Social Time is at 12:00-12:30 pm and the Discussion Group takes place from 12:30 to 2:30 pm.  (All times are Pacific Time.)

This is a good opportunity to meet people who have epilepsy and discuss issues that concern you.  It’s a good place to find camaraderie.  If you live in the area, I really encourage you to go!

To RSVP, go to http://endepilepsy.org/event/monthly-open-discussion-therapy-group-8/.  For more information, email help@endepilepsy.org or call 310.670.2870.

http://endepilepsy.org/site/wp-content/uploads/2016/09/Therapy-Group-Flyer-October-2016.pdf

Emergency Preparedness Month

September is Emergency Preparedness Month.  To keep safe during an emergency, you first need a good supply kit.

Supply Kit

Water

Canned food, non-perishable with manual can opener

Battery-powered portable radio

Announcement: Epilepsy Workshop & Social, 1 Oct 2016, Irvine, CA

Hi everyone!  I want to let you know that this Saturday, October 1, there will be an Epilepsy Workshop and Social taking place in Irvine, California, at the University of California-Irvine.  The top epilepsy specialists will be speaking on a range of topics including medications, surgery, SUDEP (sudden unexpected death in epilepsy), lifestyle changes, and women’s issues, among others.

The cost is $10 to attend.  I hope you can come!  The website to register is here.

http://endepilepsy.org/event/epilepsy-workshop-social-orange-county/

http://endepilepsy.org/site/wp-content/uploads/2016/09/WorkshopSocial_October1-FINAL.pdf

Stress and Seizures

Hello readers!  I apologize for having been away.  Being a perfectionist and a procrastinator sometimes doesn’t work well.  In this post, I will share a post by Phylis Feiner Johnson from her blog Epilepsy Talk entitled “Stress and Seizures.”  I think the way she writes about this topic explains the connection between the two very well.  I don’t think I could have done better.  Why reinvent the wheel if it has already been created?

Back To Basics—Definition of Seizure and Epilepsy

Epilepsy is a chronic disorder which is characterized by recurrent, unprovoked seizures, often with no known cause.  The word unprovoked is important here because someone can have one seizure due to alcohol, sudden head trauma, lack of sleep, or extreme stress.  That individual seizure is not counted as epilepsy. 

Announcement: Epilepsy Support Network of Orange County Monthly Meeting

Tonight, Friday, July 8, 2016, the Epilepsy Support Network of Orange County will hold its monthly meeting in Orange, California.  The theme is "New to Epilepsy? Let’s Go Over the Basics!"  There will be a session for parents presented by Dr. Maija-Riikka Steenari of CHOC and one for adults by Dr. Indranil Sen-Gupta of UCI.  The program will start at 7:00 pm, Pacific Time.   

Dravet Syndrome

Dravet Syndrome (http://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome,

http://www.dravetfoundation.org/dravet-syndrome/what-is-dravet-syndrome) is one of the most difficult-to-control forms of epilepsy.  Also known as Severe Myoclonic Epilepsy of Infancy (SMEI), it is characterized by developmental delays, frequent

Announcement: Epilepsy Foundation of Greater Los Angeles Open Therapy/Discussion Group

On Sunday, June 12, 2016, the Epilepsy Foundation of Greater Los Angeles will hold its monthly Open Therapy/Discussion Group meeting.  An informal social time takes place from 12:00 noon to 12:30 pm Pacific Time.   The discussion group starts at 12:30 and ends at 2:30.  It is open to people with epilepsy, family members, and friends. 

Announcement: Epilepsy Support Network of Orange County Monthly Meeting

Tomorrow, Friday, June 10, 2016, the Epilepsy Support Network of Orange County will hold its monthly meeting in Orange, California.  The theme is "Is Your Epilepsy Diagnosis Correct? Seizure Freedom Depends on It!"  There will be a session for parents presented by Dr. Mary Zupanc and one for adults by Dr. David Millett.  The program will start at 7:00 pm, Pacific Time.   

Seizures and Syndromes

Epilepsy is very complicated because it comprises a spectrum of seizures and syndromes. Someone who has two or more unprovoked seizures (e.g., not related to alcohol, drugs, flashing lights) within 24 hours is considered to have epilepsy. There are two broad classifications of seizures:  generalized and partial.  Within these main groups, there are at least 10 types.

Muhammad Ali

Muhammad Ali passed away this past Friday.  He proclaimed himself “the greatest boxer,” and history may prove that to be so.   Whatever your views are about his career as a boxer and his life in general, Ali was an activist in various realms. 

Epilepsy Documentary

PBS has a documentary about epilepsy, “Seized: Inside The Mystery of Epilepsy.”  It highlights the cases of a few patients and explains epilepsy.  I highly recommend it.  In my opinion, it’s about time we had more publicity and education out there.  Watch it here:

http://www.pbs.org/program/seized-inside-mystery-epilepsy/

Financial and Medical Resources for Epilepsy

Phylis Feiner Johnson has posted a very useful article on her blog Epilepsy Talk about financial and medical resources for people with epilepsy, entitled "Epilepsy--Top Financial and Medical Assistance Programs." providing a list of good websites.

One that I was impressed with was the Josh Provides.  This one provides financial aid to people with epilepsy who need help paying for transportation, medications, or seizure detection devices, among other things.

Update

It’s been awhile since I’ve written.

Much has happened during this time.  Report—the Epilepsy Support Network of Orange County reached its goal of $140,000, from its Epilepsy Walk.  This does not count the totals from the Silent Auction and Carnival, which are still being counted.  I am proud to say that I raised $1,075 and my team raised $1,445, the most I have ever done before. This means we will be able to continue providing educational and support services to the families living with epilepsy in southern California.  We will also provide outreach to the larger community to raise awareness about and promote research for epilepsy. 

Reminder: Epilepsy Support Network of Orange County Epilepsy Walk

This Saturday, April 23, 2016, is the Epilepsy Walk for the Epilepsy Support Network of Orange County in southern California, where 32,000 people are affected by epilepsy. 

This is the organization that I am involved in and participate in all of their activities.  They have supported me through difficult times, such as when I had my VNS implanted.  They do a lot of educational programming and outreach as well as support.  The end goal, of course, is to find a cure for this disorder.

With just a few days left before the Walk, I hope you can make a donation to support me.

Thanks!

http://epilepsywalkoc.kintera.org/sihm16

National Healthcare Decisions Day—April 16, 2016

Planning for end of life issues is a difficult topic to talk about with family, especially in Western culture.  Here, we think we are invincible and try to live our lives as actively as possible.

Announcement: Epilepsy Foundation 10th Annual National Walk for Epilepsy

The Epilepsy Foundation’s 10^th Annual National Walk for Epilepsy will take place in Washington, DC on Saturday, April 16, 2016.  Late registration is on Friday, April 15, 2016 at Ritz Carlton Pentagon City, 1250 S. Hayes St., Arlington, VA 22202.

There will be many celebrities and epilepsy specialists at the Walk.  If you are in the area, I encourage you to go.  Registration is $40 for adults and $25 for youths.

Details are at http://walkforepilepsy.org/.

Useful Blog about Different Types of Seizures

"Finding Freedom With Epilepsy" is a great resource about different types of seizures.  Freya Symes has written one blog entry a day about different types of seizures in the month of March, leading up to Purple Day (3/26).  Although it is not a medical website, it is a very good place to get a general overview.  Also, check out her post on epilepsy and creativity, part of the Epilepsy Blog Relay.

https://findingfreedomwithepilepsy.wordpress.com/

https://findingfreedomwithepilepsy.wordpress.com/about/

Epilepsy and Public Transportation Access

Epilepsy is often misunderstood in the public, and there is a stigma that is different from other disabilities since it is invisible. That is, until a seizure occurs.  People do not believe that people with epilepsy deserve the privileges that people who are physically disabled do.

An Update on Epidiolex—Medical Marijuana

GW Pharmaceuticals is in Phase 3 of testing Epidiolex, their form of cannabis (medical marijuana) especially for children with a rare form of epilepsy called Dravet syndrome.  This is the kind of epilepsy that Charlotte Figi, of “Charlotte’s Web” fame had. 

In the British study, results are positive.  There was a reduction of 39% of convulsive seizures with the treatment versus 15% with the placebo.

GW will soon request a meeting with the Food and Drug Administration to seek approval as an officially recognized drug to treat Dravet syndrome.  Currently, no treatments are approved by the FDA.

Resources 

http://www.reuters.com/article/us-gw-pharma-cannabis-idUSKCN0WG16Z

http://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome

http://time.com/3264691/medical-marijauna-epilepsy-research-charlottes-web-study/

http://soosepilepsycorner.blogspot.com/2014/09/medical-marijuana-and-reminder-about.html

Epilepsy Blog Relay: More than Seizures

This post is part of the Epilepsy Blog Relay™, which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

When you think about epilepsy, you immediately think of seizures.  How to stop them, how to get rid of them.  That is the ultimate goal.  However, in that quest, there is a long journey ahead, which at times seems like an impossible dream.  If I sound like Don Quixote, the Man of La Mancha, maybe that’s what it feels like—trying to slay dragons that turn out to be windmills. Seizures are one part of the life of a person with epilepsy.  The effects of treatment on quality of life may play an equal part, especially if you are on multiple treatments. 

Epilepsy Blog Relay, March 2016

The Living Well with Epilepsy blog is hosting its second Epilepsy Blog Relay starting tomorrow in the month of March.  Bloggers from all over the world will be posting their insights about epilepsy throughout the month.  I encourage you to follow along!

My post will appear on March 5^th. 

“Supporting Students with Epilepsy and Seizures in School” webinar on demand

There is an online webinar entitled “Supporting Students with Epilepsy and Seizures in School” which was recorded on September 15, 2015.  It was conducted by the Epilepsy Foundation, with two speakers— Rebecca Schultz, RN and Director of the First Seizure Clinic at Baylor College of Medicine and Donna McKenny, Lead Nurse of Centennial Schools in Minneapolis-St. Paul.

Epilepsy Walk 2016: April 23

On Saturday, April 23, 2016, the Epilepsy Support Network of Orange County will once again hold its annual Epilepsy Walk to raise funds for the organization.  The theme this year is “Seizure Wars: Join Forces” (based on Star Wars: The Force Awakens).

I am planning to start a team and ask you for Team Name suggestions.  Please let me know in the comments section!

Safe Disposal of Medications

Most people with epilepsy take medicine and of those, probably have tried more than one type of medication.  Often, they take two or more in combination.  Unfortunately, the rate of success for seizure reduction/freedom is slim after the first two drugs tried.

Therefore, we often have a lot of unused medication left over that is untouched.  It is important to get rid of it safely.

International Epilepsy Day, February 8, 2016

Monday, February 8^th is the second annual International Epilepsy Day.  It falls on the second Monday of February.  This special day was organized by the International Bureau for Epilepsy (IBE)  and the International League Against Epilepsy (ILAE) and is designated to bring awareness about epilepsy all around the world.  There are many things you can do to celebrate this day:

Black History Month—African Americans and Epilepsy

February is Black History Month.  This is a time to celebrate the achievements of African Americans, but also a time to evaluate their status at this time and work to improve it.

Announcement: Epilepsy Foundation of Greater Los Angeles Adult Social, Sunday, 1/10/16

This Sunday, January 10, 2016, the Epilepsy Foundation of Greater Los Angeles will host an Adult Social.  It will take place from 12-3 pm, Pacific Time at 5777 West Century Blvd., Los Angeles, CA 90045.  The building is located a few blocks east of LAX airport. 

For more information, go to http://us8.campaign-archive2.com/?u=d10f514cd38c5975a67488bae&id=7f8daadffc&e=e86b49c594. 

http://endepilepsy.org/site/wp-content/uploads/2016/01/Therapy-Group-Flyer-January-2016.pdf 

http://us8.campaign-archive2.com/?u=d10f514cd38c5975a67488bae&id=7f8daadffc&e=e86b49c594 

Announcement: Epilepsy Support Network of Orange County Monthly Meeting, TOMORROW--1/8/16

Tomorrow, Friday, January 8, 2016, the Epilepsy Support Network of Orange County will hold its monthly meeting in Orange, California.  The theme is "Renewed Hope from the American Epilepsy Society."  Dr. Tracy Salazar will present the annual report from the American Epilepsy Society.   It will start at 7:00 pm, Pacific Time.   

Happy New Year!

It is the new year!  I hope you all had a very happy holiday season. 

I apologize for getting a late start posting for 2016.  I have been on vacation with my family since the end of December and many things have been going on (e.g., house renovation, two-day trip to Palm Springs, etc.) 

Wishing you all a very happy and healthy new year as we will continue our quest for epilepsy awareness and seizure freedom.