Happy Holidays!

It’s so hard to believe that another year is almost over! It is already Christmas Day in much of the world! I hope you all received what you asked for.

My wish for all of us is to have a healthy, happy, prosperous, and seizure-free new year!

Happy Thanksgiving!

It is that time of the year again, when we give thanks for the things we have, and soon we will be in the gift-giving season. In general, this is a time of good cheer and connections with family and friends. However, for people with epilepsy, it can be difficult at times. The hustle and bustle of the holiday is often stressful, which can cause seizures. Things like staying up late to socialize and going shopping among large crowds especially are especially seizure-inducing. Of course drinking alcohol is an obvious one to watch out for.

In order to regulate yourself and try to have as few seizures as possible, try to eliminate as many seizure triggers as you can.

Wishing you all a very Safe and Happy Thanksgiving!

Epilepsy Blog Relay—Thoughts on CBD (Medical Marijuana)

This post is part of the Epilepsy Blogger Relay™ which will run from November 1^st through November 30^th.

I am a difficult epilepsy patient. My seizures are not under control. I am thankful that I do not have tonic clonic (grand mal) seizures, and that usually they are short and not too bothersome. However, once in a while, I do get complex partial seizures and lose consciousness. These are the ones that irritate me the most.

Announcement: Epilepsy Walk at the Rose Bowl, Pasadena, CA Tomorrow!!!

The Epilepsy Foundation of Greater Los Angeles is hosting its annual Epilepsy Walk at the Rose Bowl tomorrow, November 5, 2017. If you are interested in joining or donating, click here for more information.

https://endepilepsy.org/

http://efgla.convio.net/site/TR?fr_id=1120&pg=entry

Epilepsy Blog Relay—November 2017

Did you know that Melanie Griffith has epilepsy? The Living Well with Epilepsy blog is once again hosting its month-long Epilepsy Blog Relay and this story is what the first blog entry is about.

I hope you follow along and read about the experiences of different people dealing with this condition. It covers such a wide spectrum, as there are more than 40 types of seizures and more than 30 types of epilepsy syndromes.

It will give you a sense of what their lives are like, as patients or caregivers, and the difficulties they have to face each and every day.

Resources

https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/nov-17-ebr-posts/melanie-griffith-living-with-epilepsy.html

https://livingwellwithepilepsy.com/

https://livingwellwithepilepsy.com/category/epilepsy-blog-relay/nov-17-ebr-posts

https://www.epilepsy.com/make-difference/public-awareness/national-epilepsy-awareness-month

Epilepsy Awareness Month and Hope for the Future

Hi everyone! I apologize for being away for so long. Seems like life has been flying by. Anyway, it’s November, which means that it is National Epilepsy Awareness Month! There have been many advances in epilepsy therapy in the past year or two, as new medications and devices keep coming out or improving. 

Nocturnal Seizures

Tomorrow, August 21, 2017, there will be a solar eclipse visible in the United States. It will be very exciting! A solar eclipse occurs when the moon is in line with the Earth and sun and casts a shadow over the Earth. There are four types: total, partial, annular, and hybrid (combination between annular and total). Each has its own characteristics depending on the position of the moon in relation to the sun and Earth.  Because of the upcoming solar eclipse, I have been thinking about nocturnal seizures.

Safe Spaces for Minority Populations

Hi readers.  I would like to share with you a Facebook post written on July 11, 2017 by my friend Pablo Mendoza about the need for safe spaces for minority populations on college campuses.  Although he does not address issues related to people with disabilities, I believe they too easily fit into his argument for the need for safe spaces. Have a read and see what you think…

Announcement: Epilepsy Support Network of Orange County Monthly Meeting

On Friday, July 14, 2017, the Epilepsy Support Network of Orange County will hold its monthly support group meeting in Orange, California.  Dr. Tracy Dixon-Salazar of CURE (Citizens United for Research in Epilepsy) will discuss Epilepsy and Genetics. She is a renowned expert in this field.

Happy Independence Day!

Wishing you all a very happy and safe 4^th of July!  Hopefully, the day will come when we can all become independent despite our epilepsy. 

Epilepsy Blog Relay--What is Comorbidity?

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

Comorbidities are a big issue for people with epilepsy because many have to deal with them every day.  So, what is a comorbidity? The Epilepsy Foundation website defines it as "the presence of one or more additional disorders that co-occur with the primary condition."

Living Well with Epilepsy Blog Relay

The June 2017 Living Well with Epilepsy Blog Relay is under way.  This is a great way to get educated and see various points of view on the epilepsy experience. You can see the full list of participants at http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants.  I will be posting my entry on Thursday, June 8.  

Confession

My apologies for being away for almost two months.  I have a problem—perfectionism.  If I can’t figure out how best to say something, it is difficult for me to get it out.  I was procrastinating.  I suppose I have an excuse for not writing in the first weeks of May, because I was out of the country visiting family and friends, and was on the go day in and day out.  Then, after returning home, I suffered severe jet lag.  It took me a good two weeks to finally recover from travel.  And still I didn’t write.  Not that there is nothing to write about, because there are plenty of issues related to epilepsy to discuss.  Please let me know what you would like me to write about and I will address those issues.

Epilepsy Walk of Orange County, April 22, 2017

The Epilepsy Support Network of Orange County’s Epilepsy Walk is just about a week away! It will take place on Saturday, April 22, 2017 in Costa Mesa.  Full details are here.

Epilepsy in India

In the Western World (Europe and North America), we like to think that we are fairly well-educated about epilepsy.  At least, we know that it is not caused by spirits or that it is not “catching.”  However, still in some countries, especially Africa and southeastern Asia, there is open discrimination against people with epilepsy.

Epilepsy Summit—4/29/17 Early Bird Registration until 4/8/17

On April 28-29, 2017, the Epilepsy Foundation of Greater Los Angeles will host its Epilepsy Summit in Universal City, California. 

On Friday, April 28, there will be a day devoted to doctors and other personnel. The early Bird registration is $50 and regular registration is $75.  Onsite costs$100.  The topics are similar to the community day which is on April 29th. However, I noticed one session about SUDEP (sudden unexplained death in epilepsy), which is not included in the community day.

Americans with Disabilities Act—ACTION NEEDED!

Alert from the Epilepsy Foundation!  The Americans with Disabilities Act (ADA), the cornerstone legislation which protects the rights of people with disabilities, including epilepsy, is being threatened.

We need to urge our representatives in congress to oppose the bill in consideration right now, the ADA Education and Reform Act.  It would severely impact people withdisabilities by putting the burden for compliance on their shoulders rather than on businesses.  For example, a person with epilepsy starting a new job may have stress induced seizures and may require more frequent breaks than the average person.  However, his or her disability is invisible until a seizure occurs, so the employer might not grant this accommodation, thinking it is not necessary.  If the person does not press his or her case to get the breaks approved, inevitably, a seizure will happen and that person will get fired. 

That is why we need to fight against this bill.

Please go to this website and make your voice heard.

Thank you!

http://advocacy.epilepsy.com/efa/app/write-a-letter?1&engagementId=327113

Epilepsy Walk—Epilepsy Support Network of Orange County

I am happy to announce that the Epilepsy Support Network of Orange County’s Annual Epilepsy Walk will take place about a month from now, on Saturday, April 22, 2017.  I have created my team for this year, which is The Hummingbirds. 

Announcement: Epilepsy Support Network of Orange County Support Group Meeting

This Friday, March 10, 2017, the Epilepsy Support Network of Orange County will hold its monthly support group meeting.  The theme is “Diagnosing Epilepsy—How Is It Done?”  Dr. David Millett will be the speaker for the adult group and Dr. Daniel Shrey will present to the parent group. The program will start at 7:00 pm, Pacific Time.

Epilepsy Blog Relay—Importance of Caregivers

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!

Epilepsy is scary and takes a team effort.  This includes caregivers—that is, parents, spouses, siblings, grandparents, other relatives, or friends/guardians.  They are the unsung heroes in the fight to gain seizure freedom and help the person with epilepsy achieve a fulfilling life.

Epilepsy Blog Relay—Living Well with Epilepsy

The Living Well with Epilepsy blog has started another month-long Epilepsy Blog Relay.  It started yesterday and will run through the end of March 2017.  I will be participating on March 6.

I hope you follow along.  It will give you an opportunity to learn more about epilepsy from different points of view.  The link to the participants is below. Happy reading!

http://livingwellwithepilepsy.com/

http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-march-2017-participants

African Americans and Epilepsy

February is Black History Month.  I thought it would be appropriate to address some of the issues regarding African Americans who have epilepsy.  The data I’m presenting here unfortunately is from the 2010 census, which is the most current I could find.  I think this reflects the lack of resources going to help this population.  About 375,000 African Americans in the United States have epilepsy and are being treated for it. Over 20,000 new cases are diagnosed each year. 

Happy Valentine’s Day!

Valentine’s Day is the day for couples to celebrate their love, but many may not know that it is also special for people with epilepsy.  Saint Valentine is the patron saint of epilepsy.  It’s a strange and complicated story, but then again, epilepsy is also strange and complicated.

Announcement: Women and Epilepsy Symposium, February 4, 2017

On Saturday, February 4, 2017, in Huntington Beach, the University of California, Irvine and the Epilepsy Foundation of Greater Los Angeles will be hosting a symposium on Women and Epilepsy.  The program opens at 8 am and closes at 2 pm, Pacific Time.  It will address key issues related to women, including prenatal counseling, catamenial seizures, effects of drugs on the reproductive cycle, breastfeeding, menopause, and more.

Registration is $10.  You can prepay online or pay onsite.  For more information, you can call Rebekkah Halliwell at 310-670-2870. 

Hope you can make it!

http://endepilepsy.org/womenandepilepsy/

http://endepilepsy.org/site/wp-content/uploads/2017/01/1808_A_Epilepsy-Symposium-Flier_final-1.pdf

Patient Recommendations for Best Epilepsy Doctors

I am passing on Phylis Feiner Johnson’s invaluable blogpost about the top neurologists, epileptologists, neurosurgeons, and pediatric doctors, as recommended by patients. 

To add to the list, in Orange County, California, there a good number of doctors, including Jack Lin (University of California, Irvine) and David Millett (Hoag Hospital, Irvine).

Thank you so much to Phylis for sharing this! 

If you have any recommendations, please feel free to post them in the comments.

Resources

https://epilepsytalk.com

https://epilepsytalk.com/2017/01/14/2017-patient-recommendations-for-top-neurologistsepileptologists-neurosurgeonsand-pediatric-doctors/

Happy New Year!

Best wishes to all for a happy and healthy (and hopefully seizure-free) 2017!