Stuart Ross McCallum shares his story in Beyond My Control

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I recently reached out to Stuart Ross McCallum, author of Beyond My Control, the poignant story of the author’s life with epilepsy and his fight to create a normal life for himself and his family. I had hoped to include his New Year’s Resolution, in an earlier post.
Dedicated to a solution
However my conversation with Stuart opened the door to a much broader question of increasing epilepsy awareness when he let me know that his resolution hasn’t changed for the past few years. 
Stuart’s resolution for 2011 is to continue to enlighten people about epilepsy. He belives (as do I) that with each new person educated, the misunderstandings of the condition which has been shrouded by myths will slowly disperse. Making the world a better place for all living with the (much stigmatized) condition we all know as epilepsy.
Opportunity presented
Instead, I saw our conversation as an opportunity to shine a spotlight on Stuart’s book, Beyond My Control. Stuart has generously agreed to share a section of his prologue with us here at Living Well With Epilepsy.
Prologue

At last! The morning of the 23rd of October 2003 finally arrived. It was a bleak, cold and chilly day and my first brain operation was scheduled to be performed at 8:00am. After a forty five minute drive, my wife Lisa and I arrived at the AustinHospital in Melbourne, Australia. I had been very jittery throughout the journey, talking continuously about anything and everything. We were both exceedingly anxious with the events that were about to take place. Our hands sweaty and clasped tightly together, we nervously followed the signs to the neurology department for my first surgical procedure. As with all hospital admissions there was an abundance of necessary formalities to undergo. Once completed, I soon found myself wearing the unfashionable, ever popular standard hospital attire. With only moments to say goodbye, I was whisked away to the operating theatre.

During the past twenty years epilepsy caused a significant, often frightful, impact on my life and the lives of everyone close to me. For fifteen turbulent years, I operated my own business, managing staff with ever increasing seizure frequency. This created an unstable and at times, highly dangerous working environment. The magnitude of my condition escalated, resulting with a post seizure response of a menacing and sinister nature, prone to violent outbreaks. Whenever a frightening situation occurred not only was I in danger, my staff, and often customers were as well. Individuals perception and understanding of epilepsy clearly showed, which had surprising results. My socially unacceptable behavior ultimately influenced me to undergo two major brain operations, in the hope of gaining seizure freedom.

Enduring the postoperative healing process was unlike anything I had ever experienced, absolutely unimaginable. My surgery involved having a golf ball sized part of my brain being resected, in contrast to removing something off the brain itself; a form of rewiring took place. This sent my mind into a tailspin defying any sense of logic and reason.

More information
For more information visit Beyondmycontrol.net

Your Thoughts
I’d love to hear your thoughts on Stuart’s experience and on the broader issue of increasing epilepsy awareness. What are some ways you have made headway in increasing awareness?

Ideas for a movie: Submit to the Neuro Film Festival

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Each year the American Academy of Neurology hosts the Neuro Film Festival as a way to shine a spotlight on the fact that one in six Americans are affected by a brain disorder such as epilepsy, Alzheimer’s disease, migraine, autism, MS, Parkinson’s disease,  ALS, stroke, and more.
This festival is your opportunity to submit a film that tells your story, or the story of a loved one affected by a brain disorder. AAN hopes that your stories will help make the case for why more brain research is needed to find cures for these devastating disorders.
So, submit your video before February 15, 2011. You could win up to $1,000 and a trip to see your film screened at the 2011 Neuro Film Festival in Hawaii. You don’t have to be an expert filmmaker to share your story. Learn more about project rules and requirements and judging criteria below:
HOW TO ENTER:
STEP 1: Make Your Video (okay that one’s obvious)
Make a short video up to five (5) minutes long telling your story about someone living with a brain disorder. Be sure to use the phrase “Let’s put our brains together and support brain research. Visit www.neurofilmfestival.com.” in your video. A list of brain disorders can be found the AAN website for patients.
STEP 2: Upload to YouTube as a Video Response (this is fussy, so read carefully)
A. All entrants must upload their film on YouTube. Create an account with YouTube and upload your video as a response to the 2011 Neuro Film Festival video. When you are uploading a film on YouTube, tag your film with the following keywords so that people can find your film on YouTube: “Neuro Film Festival, American Academy of Neurology Foundation, AAN, brain.”
B.Also in the Description box, include the following text:“This film has been entered into the 2011 Neuro Film Festival from the American Academy of Neurology Foundation at www.neurofilmfestival.com. Let’s put our brains together and support brain research. Visit www.neurofilmfestival.com.”
C.YouTube comments must be turned off upon uploading to the site.
STEP 3: Complete the Entry Form
After you upload your film on YouTube, complete the official entry form on the 2011 Neuro Film Festival and Contest website, which includes a description of your film, your contact details, and the link to your video on YouTube. Incomplete forms will not be eligible to win prizes in the Contest.
If you have additional questions you can jump over to the festival’s FAQ site.
For a sample of  a previous winner check out Tracking Evan.
Comment below if you have ever participated in this festival. (Share with the class now) I’m sure many of us would love to hear what the process was like.

The inside scoop on the Joey’s Song release party

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After a months of hard work, the Joey’s Song album is ready, and will be released later this month. Kevin Baird and Michael Gomoll of the Joseph Gomoll Foundation would like to express their thanks to all those who helped the Foundation reach their Kickstarter goal.

You helped them raise $7,620 for Joey’s Song. That money will help cover the manufacturing costs which means, every single cent raised selling the Joey’s Song albums can go directly to the Epilepsy Foundation.

Party Like A Rockstar
So now, it’s time to celebrate at the Joey’s Song release party! The party is slated for January 21, 2011, at Pinstripes in Chicago, IL. Music will be at the ready, of course, courtesy of The Retro Specz, Freedy Johnston, Ralph Covert and Michael Mcdermott. The event will be a choose-your-own-adventure affair with fun for the whole family with bocce, bowling, prizes, auctions, food, and much more.

Joey’s Song CD Release Party Details
Date: January 21, 2011
Time: 7 PM
Location: Pinstripes
Address: 100 W Higgins Rd, South Barrington ,IL
Phone: (847) 844-9300
See Map 
Purchase your tickets to attend the party

More About The Album
Final Track Listings
Preorder Joey’s Song CD
Kickstarter Video

Let’s get interactive: What’s your epilepsy New Year’s Resolution?

Happy New Year! According to all the Top Ten New Year’s Resolutions lists I could find, the following resolutions were the most common:
1) Lose weight
2) Get organized
3) Spend less/save money
4) Work out more
5) Enjoy life/ Have more fun
6) Learn something new/exciting
7) Quit Smoking/drinking/etc.
8) Help others
9) Fall in love/find life partner
10) Spend more time with family

These are great but they’re pretty generic. And they certainly won’t make any headway in the fight against epilepsy.

Epilepsy Resolution or Revolution

So rather than a generic list of resolutions, I’d like to begin 2011 featuring your epilepsy New Year’s Resolutions. I sent a request out via twitter to send me resolutions.

Mike in Mississauga, Ontario, Canada said:
“My main resolution is to raise more awareness. Subsequently I plan to hold a 10k plus fundraiser for Epilepsy Halton Peel and research.”

Thanks Mike, for sending in your resolution.

Angela G. of South Jordan, Utah said:
“Forget RESOLUTIONS: make a new year REVOLUTION and fight the fear and stigma of #epilepsy#happynewyear and here’s to a #seizure free 2011″. You can follow the revolution on twitter and at http://www.purpleday5k.com/

That’s a great one Angela. 

Kris U. of Vermont said:
“My epilepsy resolution would be to have a completely siezure-free year. However, I’m not sure this is possible given the last two years. So, in lieu of that, I hope to find a medication that actually works/controls the seizures. That would mean seizure-free could be an option, without making me loopy, taken over by crazy side-effects, or whatever else.”
To hear more from Kris, you can check her out at Writing In The Mountains and at All Things Mothering.

I’m sure you’re not alone in that one Kris!

Melissa of Palm Bay, Florida said:
“My resolution is to continue spreading the word about epilepsy and seizures. So many people think something is “wrong” or that I’m “sick.””
Check out Melissa’s site at shorthairdiva.com.

We’ll chip away on this together. Thanks Melissa.

Gina of Colorado said:
“My Resolution? Finding the right med or making the IVIG treatment that may come as easy as possible for my son.”
Visit Gina’s site at specialhappens.com.

My fingers are crossed Gina.

My Resolutions
I’ve also made a few myself:
1.) Expand outreach to promote the work of epilepsy organizations throughout the world
2.) Guest blog to increase epilepsy awareness
3.) Provide a space for other writers with epilepsy looking to speak out

Send in your resolution
So send me your resolutions to livingwellwithepilepsy@gmail.com or comment below. If you don’t follow me yet, you can find me on twitter @jessicaksmith. I plan to reach out to you all more this year, so follow me and get the word out on what matters to you.

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