Thursday, June 2, 2022

Epilepsy Blog Relay, June 2022

The Living Well with Epilepsy Blog Relay just started for June 2022.

My blog entry is at this link: https://livingwellwithepilepsy.com/2022/personal-epilepsy-stories/how-an-epilepsy-support-group-can-help.html

I hope you enjoy. You can follow along the whole month for all the different perspectives people bring to their epilepsy experiences.

Sunday, December 26, 2021

Happy Holidays!

 





Hi everyone,

I hope everyone had a very Merry Christmas! 

This holiday season is different for most of us due to the pandemic, but for people with epilepsy, one thing remains the same. The chance of increased seizures goes up during this time of year because of the change in activity and stress that comes with it.

I can speak from experience. This has happened to me. The best thing I find is to take a break, a nap. People are understanding when you need to take care of yourself.

Best wishes for a happy holiday and healthy, seizure-free new year!

Monday, November 1, 2021

Epilepsy Blog Relay November 2021




November is Epilepsy Awareness Month!

This means it is time for the November Epilepsy Blog Relay!  You can follow along at https://livingwellwithepilepsy.com/.

I am the lead blogger for the month. You can also read my full story at https://livingwellwithepilepsy.com/2021/epilepsy-blog-relay/nov-21-ebr-posts/5-tips-to-live-well-with-epilepsy.html.

Here is a snippet:

What does it mean to Live Well with Epilepsy? In an ideal world, there would be no epilepsy to worry about. But as it is, epilepsy is a fact of life. It is our challenge to live with it as best we can. Over the years, I have discovered a few tips that help me live well with epilepsy.

As a person with epilepsy, I wish I could be seizure-free. That is, I suppose, anyone’s hope in my position. Right now, I am seeing a seizure reduction, but I don’t want to jinx myself by saying I’m on my way!

The truth is, I still have short seizures almost daily, and just the other day, I had a big, complex partial seizure at work which incapacitated me. I could not respond to my coworkers. Understanding people and not being able to reply was extremely frustrating. When I finally recovered, I was ready to get back to work but knew better. I had to go home and rest. My mother picked me up and drove me home.  My big mistake was that I walked to work. I thought it would be good to get some exercise, and the temperature was in the low 80s. However, the heat was enough to trigger a serious seizure.

So, how do I try to live well with epilepsy? Here are 5 tips you can try to live well with epilepsy.

Long Time No See

 Hi everyone!

It's been a long time, I know. I hope you have all been well, or as well as can be.

A lot has happened this year. I had my RNS (Responsive Neurostimulator) implanted last year.  Since that time, my hopes for seizure reduction fluctuated. At first, the count decreased, but then it went up again, much higher than before. Now, it is coming back down. I am still not satisfied. There some factors that cause my seizures: temperature changes, especially from warm to cold and extreme heat from the sun or intense exercise; stress; and laughter, especially when something hits my funny bone. I am working with my doctor to adjust my medications and RNS settings.

Meanwhile, I keep hope alive...

Sunday, November 8, 2020

Epilepsy Awareness Month: Blog Relay


 Hello everyone! Long time no see.

Well, it's been another year, and it's November, Epilepsy Awareness Month. This is a great opportunity to bring various voices to the diversity of this disease. Epilepsy encompasses a wide spectrum of seizures and syndromes. These can include side effects and conditions that accompany the epilepsy, such as depression.





Living Well With Epilepsy is once again hosting its Blog Relay this month. You can see my post and many others so far and follow along the whole month.

My Journey with RNS Surgery

Living Well With Epilepsy



Friday, March 8, 2019

MEG test

Hi everyone,

Yours truly is in San Diego, getting ready for a MEG test--a combo EEG and MRI. I have to be sleep-deprived for eight hours. I have three more to go. Then it's off to the hospital. Hopefully, it will bring some useful results that my doctor will be able to use to treat me better. Maybe they will be able to localize my seizures. We will see...

I will keep you updated.

Monday, March 4, 2019

Announcement: Epilepsy Support Network of Orange County Support Group Meeting




This Friday, March 8, 2019, the Epilepsy Support Network of Orange County will hold its monthly support group meeting. This month’s theme is “March Medication Madness!” There will be two separate presentations: one for parents of young children and one for adults.  The speaker for the parents will be Dr. Grace Lee, pharmacist at Children’s Hospital of Orange County (CHOC) and the speaker for the adults will be Dr. James Park, epileptologist at HOAG Hospital.