As you are all probably aware – November is Epilepsy Awareness month! Here is a slate of events we have going on as well as a copy of the proclamation from the Governor!
Stay tuned for more!
Aloha all! There are several upcoming events and we wanted you to have access to them all in one place!
Another perspective from the Hot Topics meeting last week from Boots:
At last week’s Hot Topics, the group was divided into two: those living with epilepsy and those who are caregiving. I was part of the caregivers group.
The group, mostly made up of parents of children who have epilepsy, included people whose children had been diagnosed within the year or almost 20 years ago. Some of the children were diagnosed at a very young age and some were diagnosed as an adult.
Questions and concerns discussed by the group included:
This sharing session showed me that the concerns of parents are universal whether your child (young or adult) has epilepsy or not. We all want to know that our child will be okay. We want to know that we did enough to prepare them so that they will be able to live a full, productive independent life… even when we are no longer around to take care of them.
Another post from T.O. continuing the discussion from Hot Topics:
Caring can be painful for those who are being cared for. It’s kind of ironic.
At this past Wednesday’s Hot Topics meeting, we broke into two groups. One group was comprised of care-givers and the other care-receivers. I was in the group of people who have epilepsy, and heard a recurring theme. Too much worry around us was bothersome.
Don’t get me wrong. The acknowledgement of caring was reassuring, but in the early stages of coming to terms with our epilepsy too much caring became more burdensome because at the end of the day, we all want to feel normal. Too much caring seemed almost counterproductive.
“Did you take your meds?”
“Are you ok?”
“You can’t go there. You have to stay at home.”
Those recurring statements (which come from a good place) can become regular acknowledgements that we are not “normal” and even suggest that we could possibly be incapable of being independent. Independence is what I believe the human psyche strives to achieve.
As a person with epilepsy, that is what I try to achieve. Independence.
It is that time of year again. The Aloha United Way‘s annual campaign is underway, as is Foodland’s Give Aloha program.
The Epilepsy Foundation of Hawaii (EFH) is like many other non-profits: we write grants, hold fundraising events, and count on the support of the community to help us run our programs. The Epilepsy Foundation provides direct services to individuals with seizure disorders. It is estimated that over 15,000 Hawaii residents have epilepsy and over 75,000 people are touched by it. For over 30 years the EFH has provided information and educational services to individuals and groups with questions pertaining to epilepsy.
We are happy to announce our participation in both of these programs! You may donate to Aloha United Way (AUW) through your workplace. If you do, or if you make a donation to AUW on your own, you can designate us as the recipient of your donation. All you have to do is provide them with our code: 96220.
Foodland’s Give Aloha program will run for the month of September. If you will be shopping at Foodland, please consider giving them our code: 77590.
We appreciate your continued support in providing services to those with epilepsy and helping us educate the public on this important issue! Mahalo!
A post from T.O., a participant at Hot Topics on July 10, 2013. We will be posting recaps after all Hot Topics sessions to keep everyone informed of the discussion even if you’re not able to attend. Please feel free to reply here in the comments section and keep the discussion going!
These days I only have simple seizures. They are noticeable enough to distract me, but not enough to make me lose significant focus. It makes work doable, but can be as annoying as the car alarm going off at 3 a.m., that I have managed to remember the sequence of (stored somewhere in my pre-frontal cortex): “Dew, dew, dew, dew… ur, ur, ur, ur… doo-dee-doo-dee.”
The seizures present an annoying challenge, but are just another hurdle in making it through the work day. My meds seem to be working good enough, for now.
Hot Topics participants spoke about how their challenges with epilepsy affected their work and had exacerbated fears of losing their jobs, discouraged them from finding a job and even made someone quit their job. On the flip side, it actually helped another participant get a job.
For some, the diagnosis of epilepsy generates fears of discrimination in the workplace and they choose to hide it. Others choose to be more forthcoming and engage fellow employees and their bosses in managing their seizures. Regardless of the path, the consensus was that it was important to train and educate those who are part of our work lives, but more importantly, know our protections and rights (see links below).
The Epilepsy Foundation of Hawaii offers training for employers with employees who have seizures in the workplace, making it manageable for all to be productive as they so choose. It’s more manageable than the Harley that keeps setting off the car alarm!
Liberating, even.
For further information:
Employment Topics
Employment Rights
Social Security/Disability Information
Stay tuned for next month!
Once again it is time for the Epilepsy Foundation of Hawaii’s Freedom Run!
There are 10k and 5k runs as well as a one mile walk to support the Epilepsy Foundation.
The race will start at 7 a.m. at Kailua High School.
Awards will be given to racers as well as participants who collect the most donation money for the Epilepsy Foundation! It is a great way to start off the July 4th holiday – and after the race, you can head over to the Kailua 4th of July Parade which is always a good time.
To register for the race, you can go to Active.com and register there. There are also applications in Hawaii Sport Magazine, or you can download an application here.
Packet pick up will be on July 3 – TBA as well as early on race morning.
We are excited for another great event this year and look forward to seeing you all there!!
A post from Lacey Shimabukuro, board member and mother of Jax.
On a cool, windy Saturday morning, groups filled the DC Metro wearing National Walk for Epilepsy shirts or shirts displaying support for loved ones with epilepsy. Team Jax from Hawaii was especially cold, proudly wearing custom Angry Birds shirts, gloves and purple shoelaces for a special little boy named Jax.
Upon exiting the Smithsonian station, we were amazed to see the crowd gathered near the Washington Monument. Still jetlagged, we missed the opening ceremony but were excited to meet up with Team Jax members living in DC. Jax had just enough time to see all the people starting the walk, before he fell asleep in his stroller. An announcer recognized groups wearing team shirts like ours, and there were lots of smiles and cheers. It was very colorful – lots of purple, and pink and orange (colors of the walk) – and lots of happy faces. We opted for the one-mile walk (instead of the three-mile walk), strolling by the World War II Memorial and Washington Monument. As we walked, we talked about how great it was to see so much support for people touched by epilepsy, and how we hoped to go back every few years.
Back at Walkers Village, we happily accepted refreshments and National Walk for Epilepsy bags, caps and water bottles – it was like trick-or-treating! It was the first day that Team Jax was in DC together, and Jax was happy to see his cousins, especially wearing Angry Birds shirts. We took lots of photos, even with Washington Redskins cheerleaders, as Ty posed in his San Francisco 49ers cap!
To my surprise, Jax (3 years old) and especially Ty (6 years old) really enjoyed the monuments and museums. Every day during the rest of our visit, we walked until our legs ached, then we walked further. We saw the White House – but just the back of it since budget cuts recently ended tours and the Boston Marathon bombing heightened security – and the Jefferson, Lincoln and Martin Luther King, Jr. memorials. At each stop, the boys happily stamped their National Parks passports. We missed the big cherry blossom bloom by a couple of days, but we took lots of photos in front of a few late blooming trees. We watched money being printed at the Bureau of Engraving and Printing – unfortunately, no free samples were given – and we spent lots of time at the different Smithsonian museums. There was so much to see and do at the National Mall, including squirrel-chasing. Jax loved chasing squirrels and circling their trees as they played hide-and-seek with him.
Outside of the National Mall, we visited the National Zoo to see the pandas and watched a DC United soccer game and a Washington Nationals baseball game. The home teams lost but we still had fun!
So what was the best part of our trip? That’s easy – travelling all the way to DC and back without one seizure. We were prepared every day, and we are so happy that we made it through this awesome trip seizure-free.
A guest post from a board member, Donna, about the new format for Hot Topics that will debut this month!
Aloha!!
We are excited to share that Epilepsy Foundation of Hawaii has revamped “Hot Topics” to “Our Hot Topics”!
From work suit to wetsuit, my name is Donna Mendes. Just like you in many ways, I have had the opportunity to wear many hats: Wife, Mother, Sister, Daughter, Team Player, Epileptic, Care Provider, Banker, and Surfer. This world is big enough to accommodate all of us with wide, accepting, and welcoming arms no matter who we are! I’m proud to announce that Epilepsy Foundation of Hawaii has afforded you and me along with others to gather our strengths and talk about different stages in life where Epilepsy challenges us. The topics we address will help us to overcome, conquer, and lead quality lives despite a speed bump we’ve hit. This meeting is for everyone interested, not just limited to people who are diagnosed with Epilepsy. Come join me on the second Wednesday of the month from 6-730 pm at Epilepsy Foundation of Hawaii’s Ward Warehouse office on the 2nd floor next door to Island Guitar (the address is 1050 Ala Moana Boulevard, Suite 2550). Come prepared to bring your thoughts as we address a different subject each month and brainstorm together on how to make the best of living with Epilepsy.
This month’s topic will be “How to share with someone new that I have seizures.”
Our discussion will focus on questions we are asked and ways to respond to dispel the myths surrounding epilepsy.
Mark your calendars!
Wednesday, May 8, 2013
6:00-7:30 p.m.
If you should have further questions or would like to RSVP, please feel free to call our office at 808-528-3058 or email director-efh@hawaiiepilepsy.com.
Hope to see you there!
Donna
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