Epilepsy Community | Life Elektrik | Lifestyle | Technology

Epilepsy Journal App

By on September 21, 2018

 

 

Have you heard about the new Epilepsy Journal App by Ollytree Applications that’s currently on Kickstarter?

 

 

The new app, currently in the Google Play & coming soon to IOS, is a completely FREE app, with NO ADS!  We know…  It’s a rare find.

 

 

Not only is the app free, but it is available in 18 languages and can help users to identify seizure triggers.  The app boasts medication reminders, data sharing capabilities, and Ketogenic Diet monitoring!

With just 23 days to reach there goal of $3,873, the fate of the app is in our hands.  If you think this app would benefit the epilepsy community and believe in their goal, consider donating to their Kickstarter campaign here.  They’ve already raised $2,046 and hope to raise the remaining balance by October 15, 2018.

The developers behind the app were inspired by their daughter, Oliva, to create the app.  You can read more about their story below…

 

“Our daughter Olivia is our inspiration for the Epilepsy Journal App. Olivia has a refractory and severe epilepsy which began at age 1. Once her epilepsy began we were advised by our physicians to keep a written epilepsy journal, in order to track trends and treatment response overtime. Although the journal was helpful in allowing us to objectively monitor the effectiveness of her epilepsy treatments, it was very time consuming and tended to be disorganized; As well, the hundreds of pages of notes did not help us when it became most critical to quickly and accurately summarize months worth of seizure history, (for example during emergency hospital visits or follow up appointments). During our experience navigating the neurology health care system, we found accurate and effective communication to be a key factor in successfully working with doctors and achieving ideal seizure control. We created this app as a free and simple way to monitor your epilepsy; track trends and patterns, objectively determine effectiveness of seizure treatment overtime, and improve success of doctors appointments. Since epilepsy contains dozens of ever changing variables, we decided to organize data into simple visuals which demonstrate seizure trends and patterns over a time span of months to years. Our epilepsy journal allows you to quickly document all the important variables concerning your epilepsy, and to generate a simple and easy to read report to print out or email your doctors. We hope that this app enables you to grasp a better understanding of your own individual epilepsy, and that it empowers you as an effective communicator and advocate within your epilepsy health care team.” – Christina Cosic (Tina)

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Epilepsy Awareness | Epilepsy Community | Epilepsy Education | Life Elektrik | Uncategorized

ATX Warrior Meetup

By on June 28, 2018

The scenery laid back, the sun shining, the sound of conversational chatter and a soft breeze blowing so trees danced in the bright sunlight.  Cosmic Coffee + Beer Garden was turning out to be the perfect setting for our Austin Warrior Meetup, and we were looking forward to hearing our guest speaker – Gina, Director of Rawsome CBD Austin.  (You may remember her from our previous post “Rawsome CBD.”

 

Entrance to Cosmic Coffee + Beer Garden

 

 

 

 

 

 

It’s HOT & humid during the summer months in Austin, so we found a nice picnic table in the shade and set up – awaiting the arrival of Warriors.  We laid out our newsletter sign up, giveaway prize, and scattered around a few goodies for attendees.

 

 

 

 

Did you notice the Rawsome CBD literature in the photos above?  Remember we mentioned Gina from Rawsome CBD Austin was our guest speaker at the meetup.  She came out to share information about Rawsome’s products and answer questions from Warriors about CBD and its benefits.

 

Life Elektrik Founder, Christalle Bodiford with Rawsome CBD Austin Director, Gina Andre

After Gina shared her insight and product information, we had time to catch up with fellow warriors and hang out in the shade – discussing the new in our lives and daydreaming about road trips and future goals.

 

Warrior Attendees Em & Jade

Next month, we’ll be hosting our Austin Warrior Meetup at Dart Bowl on July 21, 2018 from 7:00-8:00PM.  Mark your calendars, and don’t forget to RSVP!

 

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Epilepsy Community | Healing | Lifestyle

Rawsome CBD

By on June 26, 2018

CBD has been said to help decrease seizures, ease body pain, depression, anxiety, aid in sleeplessness, PTSD, and many other physical and mental ailments…

In our experience each person is different, but we want to make you aware of all healing options and strive to provide information on companies we think are providing beneficial products to the epilepsy community.  Different healing methods work for different people.  Use your best judgement and talk with your doctor before making changes to your seizure control methods.

Many people in our community use CBD as seizure control…  While laws are evolving, patients are left confused about what is and isn’t legal.  In general the public is misinformed and some think Medical Marijuana and CBD are the same.  THEY ARE NOT.

Here’s a short video by Carolina Hemp Co. that quickly explains CBD.

CBD is a non-psychoactive part of the hemp plant and oils typically contain 0-.3% THC.  While some brands of CBD may contain up to .3% THC, it is not enough to create the “high” effect that most people worry about when considering CBD as a remedy.  Worried about failing a drug test at work, if taking CBD?  Not to worry…  You will only fail your drug test due to CBD IF you are taking extreme amounts.  (Which is not likely…  Besides, if you need that much CBD to function – you probably aren’t working anyway.)  CBD dominant strains have little to no THC (as mentioned above), and CBD rich strains have a higher percentage of THC.

This is what Rawsome has to say about CBD!

 

For those interested in CBD, we’ve found a great company that provides clean & organic CBD – with NO THC!  Life Elektrik Founder, Christalle Bodiford, has been our guinea pig for the past few weeks, taking Rawesome CBD to confirm the claims.  We are happy to report that Rawesome CBD has been helping to control Christalle’s seizures.  Not only was she impressed with the product, but the Rawesome Team was friendly, helpful, and educated – not to mention the CBD is affordable too.

Upon entering the parking lot and walking up tot he Rawsome shop, I first noticed they are wheelchair accessible, which is always a plus for those suffering from chronic ailments, diseases, or disorders.  Rawsome has a quirky but inviting vibe when you approach the building, and the “yard” area is decorated with unique fixtures.  You may find a rooster or former stop sign up-cycled to be artwork, portraying Adam & Eve in a garden with doves flying overhead.

 

 

When walking up to the front, it was a little confusing finding the correct building, but lucky for you, we took photos!  After walking up the wheelchair ramp, you’ll see two buildings – The building on the left shows a Rawsome sign in the window.  The building on the right is Gina’s (Rawsome Austin Director) architecture studio.  (Below is a photo of the left building, and you can see the walkway to the shop on the side.  The walkway goes between both buildings and opens up into a small garden with the parking lot in the back.)

 

Entering the Rawsome shop, the feeling is relaxing – think spa atmosphere meets great customer service, with a focus on healing.  It was a comfortable, and you feel good just being in the space.  It’s a cheerful and bright environment, that encourages you to hang out on the couch or sit at the table and chat with the staff.

 

Only offering CBD oil, Rawsome focuses on providing the cleanest THC-free oil possible.  They offer oil ranging from $23 (300 mg) to $488 (9000 mg) – If you’ve followed Life Elektrik long enough to know about Alaskan Cannabis Exchange (CBD ACE0, you’ll find the same quality product from Rawsome for just $44/bottle, compared to CBD ACE’s $95/bottle for 600 mg of CBD oil.

 

 

Eager to educate and inform the public about CBD, Rawsome has educational materials and customer testimonials laid out on the counter and tables, easily accessible for new customers or the CBD curious.

 

 

 

If you’re lucky, you’ll also be able to grab a CBD cold brew from Rawsome and one of their brightly-colored can topper, made from recycled frisbees!  This isn’t an item they always have in stock, but interest is growing!

 

 

We encourage you all to do your own research and use the healing method(s) that work best for you!  That being said, we can say with confidence that Rawsome CBD is a great company with an amazing product, and we are happy to connect with a company that focuses on CBD education, healing, and understanding.

To learn more about Rawsome, you can visit their website or stop by there shop in Austin, TX at:  1210 Rosewood Ave. Suite 10, Austin, TX 78702.  Here’s a glimpse of their FAQs…

 

 

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Epilepsy Community | Epilepsy Education | Technology

SeizureLink FAQ Webinar *UPDATE*

By on June 21, 2018

 

As we learn more about epilepsy, new seizure alert devices come out on the market.  The latest and greatest device is called SeizureLink.  The company will soon be releasing a monitoring device that attaches to the user’s bicep and alerts via their designated mobile device if the user has a tonic clonic/grand mal seizure.

There is currently a “Reserve” list for the wearable.  To reserve your spot, visit the SeizureLink website.  Once you’ve submitted your info, SeizureLink will follow up with your reservation certificate via email.  This certificate will essentially hold your place in line and be numbered with your spot.

In an effort to educate people interested in SeizureLink, the company held a webinar to explain how the product works, with a Q & A session.  Check it out below!


 


 

As we all know, it so important to ensure seizure alert devices work accurately to alert a caregiver promptly.  That’s why SeizureLink is hosting a study to see how the SeizureLink device performs on different people in different situations.

They are still in need of volunteers to participate in their study, and are currently accepting applications.   If you are interested in participating in their study, you can apply here.

Still curious about SeizureLink?  Want to follow along with their journey to market?  Good news!  They just launched their blog, and you can check it out here.  With a focus on epilepsy related information, lifestyle advice, and product info, the SeizureLink blog should prove to be a great resource for those living with epilepsy.

 


Still want more?  Visit the SeizureLink website at:  seizurelink.com or contact them directly via their website’s contact form.

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Epilepsy Advocacy | Epilepsy Awareness | Epilepsy Community | Epilepsy Warrior

10 Ways to Advocate

By on June 8, 2018

 

 

Coming up with ways to advocate can be tough, especially if it’s your first time advocating alone, but don’t be discouraged!

There are plenty of ways to advocate, and we’re here to help you find one that works for you.  In our list below, we’ll show you 10 ways to advocate and raise epilepsy awareness.

 


 

1. SHARE YOUR STORY:  There are many platforms for you to share your epilepsy story, such as Life Elektrik, YOOCAN, Living Well With Epilepsy, or The Epilepsy Network.  Simply email LifeElektrik@gmail.com to share your story in our community.

 

2. SHARE EPILEPSY FACTS: This may be the easiest way to raise epilepsy awareness…  Search the hashtag “epilepsyfacts” on Instagram or search “epilepsy facts” in Google, and you will see hundreds – if not thousands – of epilepsy fact related photos.  All you have to do is save the photo and post it on your social media accounts. (Be sure to give credit to the content creator, if known.)  If you are tech savvy, you can always create your own graphic using an app.

 

3. WEAR A PURPLE RIBBON: It doesn’t have to be a special day or month to raise awareness!  Stop by a craft store such as Hobby Lobby, Michael’s or even a Dollar Store to pick up a spool of purple ribbon & safety pins.  Cut the ribbon into pieces and pin one to your shirt.  You could also carry the cut ribbon & safety pins around with you, passing them out to others.

 

4. HOST A BAKE SALE:  Love to bake?  Great!  Host a neighborhood, church, or school bake sale -donating the funds to an epilepsy organization of your choosing.  Ask others to participate by contributing a baked good and helping to spread the word.

 

5. TELL SOMEONE YOU ARE AN EPILEPSY WARRIOR: When you’ve had epilepsy a while, sometimes it’s difficult to remember how challenging it can be to be open up to others about the disorder.  If you are newly diagnosed or have not shared your diagnosis with someone, open up!  Explain to them that you have epilepsy, but it doesn’t have you.

 

6. SEIZURE FIRST AID EDUCATION: Share with others what to do in case you or someone else has a seizure.  This can be your coworkers, friends, relatives, or neighbors.  Not sure what to teach?  You can find our Seizure First Aid Facts here.

 

7. HOST A FUNDRAISER:  If hosting bake sale or lemonade stand isn’t your thing, you can always host a good ole fashioned fundraiser.  All you need is a goal and a mission!  Set your fundraising goal. (We recommend starting small and working your way up with each fundraiser you host.)  If  a $1000 goal seems too high, start with a $100 goal, and increase each time you meet your goal.  Share your fundraiser on social media, with friends & family, or with your community.  Once you reach your fundraising goal, donate the proceeds to the epilepsy organization of your choice.

 

8. CREATE A CHALLENGE: We all remember the “Ice Bucket Challenge” and other similar challenges.  You can create your own challenge movement to raise epilepsy awareness.  Here are a few ideas, but feel free to come up with your own unique challenge: 

  • Purple Clothing Challenge:  Have people wear purple clothing & accessories, and post a photo on social media – make sure to come up with your own unique hashtag & re-post those that participate.
  • Donation Challenge:Ask people to do an activity and donate.  For example, Moonwalk 10 steps & donate $10 to the epilepsy organization you choose.  Be sure to choose an organization before asking for donations.
  • Doodle Challenge:  Participants will draw an epilepsy related doodle and post a photo on social media.  It can be as simple as a ribbon or as complicated as a brain.  It’s up to the doodler!
  • Dance Move Challenge:  Request that participants record or go live with their dance move to help raise awareness.  After their dance, the participant could say,”I’m one in 65 Million!,” I’m one in 26!,” OR “I’m one in 3 million!”  (1 in 26 people will develop epilepsy in the US.  Approximately, 65 Million people worldwide are living with epilepsy.   An estimated 3 million people are living with epilepsy in the US.)

9. GIVE ADVICE: Remember how you felt when you were first diagnosed?  Do the words “hopeless,” “confused,” or “scared” ring a bell?  Reach out to a fellow epilepsy warrior that is newly diagnosed or feeling isolated and offer advice.  Share what has helped you along your epilepsy journey or ways they could improve their outlook or quality of life.

 

10 . WORDS OF ENCOURAGEMENT:  If you see a fellow epilepsy warrior is feeling low or needing a bit of encouragement… A little support goes a long way, and you never know how much someone may need uplifting.  Sometimes, when we are having a bad day, it can feel like the weight of the world is on our shoulders.  Let your fellow warrior know that “this will pass” and to stay focused on the good stuff in life.


 

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Epilepsy Advocacy | Epilepsy Awareness | Epilepsy Education | Epilepsy Warrior

Being 1 In 26

By on May 15, 2018

We came across a great video last week, so we reached out to the creator to ask if we could share it with our amazing community of warriors!

Mackenzie Hopfauf (@kenziefilm614) is studying film, and she also has epilepsy.  The short film below shows the reality of living with epilepsy from Mackenzie’s perspective.  Not only can we relate (extremely) to this video, but this is a well thought out and creatively shot & edited short film.

Mackenzie captures the feeling of being “stalked” by the invisible presence called “epilepsy” and how the chance of having a seizure constantly follows those of living with epilepsy, making us feel scared and caught off guard when it strikes.

We applaud Mackenzie’s courage in sharing her perspective and speaking out via her film for those living with epilepsy. Keep up the great work! 💜

 

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Epilepsy Advocacy | Epilepsy Awareness | Epilepsy Community | Epilepsy Education | Life Elektrik

Upcoming Events

By on May 13, 2018

Hi Warriors!

We have a few events coming up that you should know about.  If you live in the following places, mark your calendar for our next support groups: (Click the locations for event details.)

Austin, Texas, USA:  MAY 19, 2018

Hosted by Life Elektrik Founder: Christalle Bodiford


Dothan, Alabama, USA: MAY 26, 2018

Hosed by Life Elektrik Ambassador: Dawn Hicks


London, England, UK: JUNE 23, 2018

Hosted by Life Elektrik Ambassador: Nathan Harvey


All events are FREE to attend. USA attendees must be 21+. UK attendees must be 18+.

Visit our Ambassadors page to learn more about Life Elektrik Ambassadors.

If you have any questions about the events, please email LifeElektrik@gmail.com.

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Life Elektrik

Movin’ & Shakin’

By on April 19, 2018

There’s a lot going on ’round these parts, so here’s a quick update!

Music:  “Normal Crazy Day” – Lobo Loco:  http://freemusicarchive.org/music/Lobo_Loco/CAVE_OF_MIRACLES/Normal_Crazy_Day_ID_692

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Epilepsy Advocacy | Epilepsy Awareness | Epilepsy Community | Epilepsy Education | Epilepsy Warrior | Life Elektrik | Lifestyle

Our First ATX Support Group

By on April 15, 2018

Saturday was beautiful!  The perfect day to fly a kite at the park but not to hold our first support group in a park.  It was so windy!  Nevertheless, we made the best of a windy situation.

We arrived early to begin setting up, realizing there were other events being held at the park, we found a quiet picnic table to setup and await our guests.  There was only one problem…  I FORGOT THE BANNER CLIPS!  I took nylon rope & zip ties, but I forgot clips.  We improvised…  Using the nylon rope, we were able to tie the banner to some tree limbs.  (LOL)  That’s how you make lemonade out of lemons, warriors!

 

Our next challenge would be setting up without the wind blowing everything off our table!  (EEK!)  We begin to setup the table, having to chase items as the wind blew them away.  No problem, we’ve got this!  All of a sudden, we hear,”POP!”  One balloon down…  I couldn’t believe this was happening. 

We kept moving along, getting everything in place, slowly but surely.  Even Sadie (our pup) helped keep an eye on things, while hanging out in the shade.

 

 

 

 

The setup may have been a bit crazy, but the meetup ended up being great!  For our first group, we were very happy to have each other’s company and talk about future meetups.  We had  great conversation, snacks, & drinks in a park on a beautiful afternoon.  I’ll take that over a “perfect” meetup any day.

 

 

 

 

 

To learn more about Life Elektrik support groups or to join us for our next ATX Epilepsy Support Group, visit our “Support Groups” or “Events” pages.

For our May meetup, we will be participating in the Epilepsy Foundations Superhero 5K as team “Life Elektrik.”  To join our team visit our Event page, where you’ll find more information and a link to register for the 5K.

 

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