If you’re like most of us with Epilepsy, at some point in your battle with this disease, you will switch neurologists. Sometimes it has to happen because you will relocate…or you might just need a change. In more than 7 years, I’ve switched 3 times. Either way, it’s something you shouldn’t fear.

The first time, I truly adored my neurologist here in metro-Detroit. After all, he saved my life! But, my husband and I (he was my fiance’ back then) felt I needed an epileptologist (for those of you who don’t know…it’s an Epilepsy specialist). So, I found a fantastic specialist at Johns Hopkins in Baltimore. Dr. Ron Lesser was full of facts, direct and extremely informative. He never minced words with me when it came to getting me to realize that my life had changed. I was under his care for just 4 years, and in that time, my seizures were located, my ridiculous allergies to virtually 80 % of all anti-seizure medications were discovered, I tried the Ketogenic Diet with another Hopkins doc, Dr. Eric Kossoff, and I made an attempt at Epilepsy Surgery.

Fall 2006, Johns Hopkins Hospital EMU

When we moved to my native Detroit-area in the summer of 2007, I found another epileptologist, my third neurologist, Dr. Aash Shah, and although his style and his demeanor is so different than my other doctors, I couldn’t be happier. We made yet another attempt at Epilepsy surgery, this time these doctors were quite aggressive since it was my second attempt. But, it was much too risky to do the surgery.  I would have lost too much in language skills, cognitive abilities and balance. So, along with my surgeon and Dr. Shah, we decided to have the Vagus Nerve Stimulator implanted right away.

Why have I been so happy and so lucky with my doctors? Believe me, I have spoken to other doctors about my care. I’ve chosen my neurologists very carefully and very strategically. Here’s a short list of suggestions when it comes to choosing a neurologist…it was passed along to me by a doctor as I was leaving Maryland and moving to Michigan:

-What does the doctor expect the patient to discuss at regular visits AND why? How long does the doctor expect visits to last?

-If you are not seizure-free, what sort of treatment options should a patient expect, i.e. testing/clinical trials/medicine switches/surgery?

-What information/support does the doctor expect from the patient at each visit? Seizure logs? List of medications? Family members to help take notes? Video/photo of seizures?

The Epilepsy Foundation of America has some very good ideas on choosing a neurologist. The Epilepsy Foundation of Michigan’s Website also has a great checklist that you can take with you to your appointment, when you are interviewing a new doctor, or visiting with your current neurologist. Also, check out Seizuretracker.com, it’s a fantastic site to make logging and tracking your seizures SO much easier and simpler! Either way, switching doctors…or even getting a second opinion shouldn’t be something you fear. It’s a necessary part of your care.

This is a wonderful story of one community’s determination to help a young boy deal with his battle with Epilepsy.
It’s also a reminder that for those of us with Epilepsy, animals can do so much more for us than just provide ordinary companionship.
A look at the news story…

And…they aren’t seizure alert dogs, but my black lab, Tucket sure has some phenominal seizure detection powers! Now…the puppy, Charlie, I’m not quite sure about! I’ll be sure to let you know!

If you’re like me, when it comes to your illness–in this case Epilepsy, if it’s time to try something new, whether it’s an anti-seizure medication, a test, a new doctor, treatment center or alternative therapy, the research floodgates are opened. My computer becomes my best friend. No sooner had Dr. Shah suggested Vimpat to me a few months ago…I was online checking chat rooms, neurology research websites, hospital sites…anything that would give me nuggests of information about this relatively new drug. I also bombarded him with questions about the drug. How many patients had he prescribed the drug to in its relatively short time on the market? How had they responded?

After I information-gathered, I made my decision. It was time for me to try this new anti-seizure medication. And let me tell you, I read some very negative ’stuff’ about the drug. Those of us in the Epilepsy community are extremely opinionated! And, some people certainly don’t mince words when they are writing about medications or experiences with doctors or treatments! If there’s one thing I’ve learned during my illness, when it comes to your information-gathering, you must take everything you read in these chat rooms and sites (including this one!) as opinion, because that is precisely what it is. Each of us with Epilepsy is very different. All of our seziures vary. My reaction to Vimpat is going to be different than the next person’s. My experience at Johns Hopkins Hospital, 2003 – 2007 was fantastic. Someone else may never want to walk through those doors again. It’s all opinion and it’s all very subjective.

So how do we cut through the opinions and make sure we make the right decision? Take choosing a doctor, for example. If you are switching neurologists, make sure you interview that doctor you have your eye on. Go into your appointment with a list of questions–on paper. How many patients does he see with Epilepsy? What does he expect you to tell him at each appointmen? How often does he expect to see you? Does he expect you to keep a log of your seizures? What services can you expect from him? If you are not seizure-free at the moment…are you going to pursue treatment choices other than medication? These are just A FEW of the points that should be made when you visit with a new doctor.

You are in charge of your care when it comes to your Epilepsy. As I so often say, and we must all remember, we are each so different when it comes to our Epilepsy. Opinions are just that…so take them as such.

The power of connection.

As someone living with Epilepsy, I never truly understood what it meant or how much it could do in terms of outreach and support until I experienced it. As those of you who read http://www.brainthunders.com know, I’ve only been writing this blog for a few months. So, I must admit, my connection to the Epilepsy community was limited up until December 1, 2009. I was never a member of any e-communities, I didn’t blog about Epilepsy or seizures. And, unless someone emailed me because they were referred to me by my neurologist or my neurosurgeon, I never spoke about my contacts in the Epilepsy community. And, I didn’t really share my experiences. I was just a Mom and a wife. I had a corporate PR job which allowed me to work from home (rare, I know). And, I did my very best to take care of my  health. It just so happened that I had Epilepsy.

I was and still am very active with the Epilepsy Foundation of Michigan as a volunteer and donor, and I know quite a few people who are part of that organization, but…my connections ended there. My medical needs have been met. I am thrilled with my neurologist and I have gone through my surgeries. So, unlike so many people out there who are fighting this fight, I am satisfied for the moment. But when I made the decision to begin the website, I began to get involved in various e-communities and chat rooms. I logged on to some of your blogs and sites and I stumbled upon various non-profits that are cropping up.

I once was a person living with Epilepsy, who never really believed there was much connection or outreach, but I’ve since changed my mind…but just a bit. I do believe there are resources out there, and we can connect. But I’m not yet convinced we are all on the same page. I think we are a community divided, but that can change if we just connect with each other through websites such as this one, Facebook, Twitter or The Epilepsy Foundation’s e-community site. Share your stories and your information. Be a friend to someone who might need the support. Virtual help is possible!

I hope someday, we can have a centralized site where we can post information on all Epilepsy-related websites and blogs. If you have dollars to you want to give, you can refer to the site and make a conscious decision as to where to direct your dollars by viewing all of the various Epilepsy-related sites.  I think it would be so helpful to the Epilepsy community, and it would help us all strengthen our connections!

“Pick a passion.”

That was the advice of a great neurologist I began seeing in Baltimore at Johns Hopkins several years ago. After looking over my medical records and my overall situation, he told me that it was likely my cognitive skills would suffer, my memory would be damaged and everything I had learned about writing would take a hit, so it would truly benefit me if I found something extraordinary to really sink my teeth into. It was one thing to get used to experiencing the frequent seizures, but it was something else to realize what the seizures were doing to my body and my life. I had to change the way I was living my life. And, changing my life meant something other than turning my car keys over to my husband.

For me, this meant looking beyond what I had known for the last three decades. I had graduated from college with a journalism degree. I had become a broadcast journalist and had moved into corporate PR. My hobbies were reading and reading. Yes, I exercised, but I wasn’t really passionate about anything other than work, my family and my dog…until my husband bought me a few cookbooks and I began reading those.

Then, I took a few cooking classes and began watching the Food Network (thank goodness for that channel)! Dinner for Andrew each night, and now for the three of us, including our 4-year-old daughter Hayden, has become such a festive occasion for me. I love creating in the kitchen. Cooking is an all-out hobby for me. It’s an outlet, a passion, truly a diversion from seizures and medications and the gloom of disease. It takes me into another world and allows me to be creative and constructive.

So…what’s for dinner tonight? Homemade meatballs with capellini! Hayden will help out with the meatballs–she LOVES getting her hands into that meat!

And to answer your emails even before they arrive in my inbox–my very favorite cookbook at the moment…Mark Bittman’s “How to Cook Everything” http://www.amazon.com/Cook-Everything-Completely-Revised-Anniversary/dp/0764578650/ref=sr_1_1?ie=UTF8&s=books&qid=1267455329&sr=8-1 Happy Cooking! And, feel good!

Something landed in one of my three inboxes yesterday, late afternoon, that I had to read over and over again. It wasn’t because I had a pretty exhausting day…it was merely because I couldn’t believe the words that were jumping off of my screen. Joe LaMountain, who is the Director of Grassroots Advocacy at the Epilepsy Foundation of America sent an email, and I’ll quote…

“Keep Children Safe in School…Urge your Senators to cosponsor S. 2860 and your Representatives to cosponsor H.R. 4247.”

The email goes on to proclaim today, Friday, February 26, 2010 as a National Call-In Day for these pieces of legislation for “The Preventing Harmful Restraint and Seclusion in Schools Act”. This new bill in Congress has been endorsed by the Epilepsy Foundation. Why? If you click on some of the links which I will give you in just a moment, you can read and see that many of the hundreds, if not thousands of children that are restrained and injured each year have Epilepsy. They are bruised, cut and traumatized. In many cases…educators and school officials don’t know the first thing about Epilepsy, so this is their first reaction to a seizure.

Photo courtesy of Joe LaMountain, Sparklight Communications

Reports have detailed hundreds of abusive uses of the practice, most frequently on children aged 6-10 and disproportionately on children with disabilities like epilepsy. 

I didn’t dig out my old Emily Post etiquette book this morning, and frankly I don’t know that she would have an answer to this question. But one reader sent me a very sweet email this week and she seemed both frustrated and hurt. I thought I would share.

Samantha (not her real name…I thought I would protect her identity since we do live in this virtual world!) has been living with Epilepsy for most of her life. She began having seizures after a car accident when she was 7. She’s in her mid-30’s now, and she’s been going through some things: stays in a hospital Epilepsy Monitoring Unit (EMU) so that doctors can collect more data on her seizures and to see if she is a candidate for surgery. She also had a small surgical procedure which had something to do with her Epilepsy. She has taken some time, here and there, off of work, always following the rules and always keeping her employer informed of what she’s been up to in terms of her medical situation.

Samantha tells me that she’s finding that people she’s friendly with at work who are just finding out about her Epilepsy have now begun to ignore her. She was somewhat shocked that when she returned home from a 3-day hospital stay…her answering machine was empty. NO calls. When she returned to work, no one asked her anything about her illness, hospital stay, prognosis for surgery, etc. She has a few close friends and family who are in her support network, but she said for the most part, the people she interacts with each day at the office have shut her out.

So why won’t people talk about Epilepsy? Once they hear about the diagnosis, if they find out you might be on course for a major brain surgery…why do they all of a sudden tune you out? I always feel like people are very willing to talk about cancer. Don’t get me wrong, I have dear friends dealing with cancer now and I continue to keep tabs on their progress and remain as in-touch as I can.

I have a very dear friend…she and I have been friends for literally half of my life. And she simply does not want to talk about my illness. Period, The End. I’ve been challenged about this point by my mother, my husband, one or two other dear friends…but this particular friend would raise my daughter for me if I needed her to…but she is frankly not one to delve into the ins and outs of my disease. I’m not sure if it’s because she would rather remember me for the person I was before I got sick…but either way, she bestows her friendship and love upon me in a certain way–she doesn’t ask me ‘how are you feeling?’ each time we speak, and I’ve grown used to that.

Some ways we might get people to recognize Epilepsy, if we need them to:

-If you are in an office setting and you are returning to work…post a very clean, neat 8.5×11 sheet in your cube or office detailing ‘What is Epilepsy’. That way, it’s a conversation starter!

-When and if people do ask you, ’how are you feeling?’…try to remain as positive as you can. Briefly explain what’s been going on and ask them if they have any questions for you!

-If they do ask…give them some great websites to check out. Let them learn more about Epilepsy on their own.   http://epilepsyfoundation.org/, http://www.cureepilepsy.org/home.asp

Good luck…remember, the more we do talk, the more attention Epilepsy gets!

Some great new resources I must make you aware of on this snowy Monday morning. Another snow day here in metro-Detroit! Thank goodness I only have a Pre-Kindergartner! When do they stop crying when school is closed due to inclement weather?! 

Here’s a great article on what causes difficult to control Epilepsy. Many of us are on anti-seizure medications…some of us take multiple drugs. This profiles what it’s like to live with Epilepsy where drugs are not the answer. http://www.epilepsy.org.uk/info/difficult

Love this site!! This is a site specifically designed to train school personnel in seizure rescue. Whether we are talking teachers, school administrators, or even students…if you have someone with Epilepsy in class, it’s a great idea to mark this site. http://www.takechargeteens.org/school%20personnel%20training.html.

http://www.nomoreseizures.org/index.html# This is a website, part of the Epilepsy Foundation, designed to really make you active in your own care. It ‘talks’ about different options like the Ketogenic Diet and the Vagus Nerve Stimulator (something I’m awfully familiar with!). It even suggests you explore talking about surgery with your doctor. It has helpful Q&A about possible depression symptoms, a letter to provide to your pharmacist declaring that you have Epilepsy and more. It’s quite good.

Make sure you take some time to watch this short film…http://www.youtube.com/watch?v=nehY7MdlMUU. http://www.Seizuretracker.comfounders Rob and Lisa Moss have a friend who created this, “Tracking Evan: Caring By the Numbers”.  The film portrays the true story of Evan Moss and his battle against Epilepsy and Tuberous Sclerosis (TSC) and how his family turned their hardship into something useful for everyone afflicted with Epilepsy. The film tracks Evan from birth through his brain surgery to remove 3 tubers at the age of four, and his parents who turned their frustration into SeizureTracker.com, an online tool for logging seizures and medications. You can log on and vote (5 stars please!) for the film, the winning films will be shown in Toronto in April at the Neuro Film Festival.

And finally…if you haven’t done it yet, check out http://www.talkaboutit.org/. It’s a fun, lively way to get into Epilepsy awareness. Greg Grunberg (great Epilepsy advocate-his son lived with seizures until he had surgery) leads a crew of celebs in talking about Epilepsy.

Happy shoveling to those who are living in the path of this snowstorm!

If you’re like me, you’re always wondering not only how can you help yourself through this disease we call Epilepsy, but how can you help others?

Of course, there’s volunteering with organizations like your local Epilepsy Foundation (for me, it’s the Epilepsy Foundation of Michigan, something I hold very near and dear to my heart!! http://epilepsymichigan.org/). But you can also really take that leap and do something bold like take part in a research study. http://www.epilepsy.org.uk/research/participate.html#memoryandvisual

It’s not as scary as it sounds. Really! I did it a few years ago at Johns Hopkins Hospital with the Ketogenic Diet. It was actually very interesting and quite informative. And, you can get so much satisfaction from realizing that you could be helping not only yourself, but thousands of others who live with the very same disease you live with. There are all sorts of trials available, you can speak to your doctor and also you can peruse the web. One good place to start is the website I included above.

There’s everything from speaking about anti-seizure medication side effects to trying new anti-seizure meds to research on memory loss from Epilepsy. Some research studies are long and some take just 20 minutes to complete! It’s definitely something you might want to consider. I’m sure you’ll agree that any and all information we can give to doctors and researchers can only help them in their studies to someday come up with a cure!

Lots of people in the Epilepsy community were chatting and emailing yesterday about this story that I first saw on CNN: http://www.cnn.com/2010/HEALTH/02/15/tv.medical.dramas.seizures/index.html. It’s all about how medical dramas, from “Grey’s Anatomy” to “House” essentially get it wrong almost half the time when it comes to dealing with seizures. The research will be presented at the American Academy of Neurology’s annual meeting in Toronto, Ontario, in April. I love that!! I hope all of the epileptologists in attendance will stand on their seats and demand that something be done to educate people more about Epilepsy and seizures!

Back to reality…the story is very good, but it doesn’t go the extra mile. What can WE do to combat the problem? How can we educate people? I received a lovely letter in the mail from one of my Brainthunders.com readers. She sends a ‘fact sheet’ to family and friends every now and then, maybe with holiday cards or thank you notes. It details facts about Epilepsy and what-to-do in the event of a seizure. I think this is a great idea, and as I told her–I’m going to borrow it! It’s up to us to spread critical information and to inform people who know us and care about us. It’s also called advocacy! And, if we don’t stand up for ourselves, there might not be anyone left who does!

So, I guess one lesson from this study can be…watch these shows for the characters’ love lives, not for the lessons they are teaching on seizure first aid!