This is a story of how we can use our Epilepsy to make a difference…to prove a point…and to promote safety.
CHEERS to the Epilepsy Foundation of Florida for partnering with a woman named Brenda Bartlett, and their collective effort to give away tens-of-thousands of bicycle helmets in the state of Florida. Brenda was injured at a child, knocked off of her bike as she was hit by a car. She spent days in a coma and was left with Epilepsy.
The Epilepsy Foundation of Florida has set its sites on giving away 42,000 helmets to Florida kids. And…to go a step further, they have information on their site on how to properly wear a helmet.
If you’re like me, you know A LOT of adults and even some kids…who do not wear helmets. I’ll be the first to admit, my husband does not…but of course our daughter does. I see the kids in the neighborhood zipping around on their scooters and their bikes, helmet-less. I’m always inclined to ask, ‘why?’, but I tend to keep quiet and continue to reiterate to Hayden, why it’s so important to wear a helmet. Stories like these…Brenda’s story in particular…makes me want to run right out to the bike store and buy those I love a helmet (and one for skiing too).
This afternoon, I will be testing Hayden’s helmet to make sure it fits. And, I’ll be asking Andrew if he prefers a red one or a blue one.
I’ve said it before in many-a-posts, but I’ll say it again, memory issues absolutely stink! I know…harsh, but so true. Don’t you agree?
You can suggest all of the tricks and methods to try to retain long term and short term memory. Trust me, I’ve tried it all. I carry a tiny notebook in my purse, I keep a pad of paper in the same spot at all times, on my desk, both have scribbles and items I’ve jotted down during the last few years…my meager attempt to make sure I don’t forget important events and people. Still, my failing–or already failed–memory continues to burden me.
This is the worst…when I’m at an event or a meeting, even something as innocent as an open house at Hayden’s school to meet the teachers. Someone walks up to me, hugs me, begins to talk about the past, clearly attempting to reconnect, and I have absolutely NO remote idea who this person is. Talk about inducing a seizure due to stress!
It’s been suggested by a Brainthunders reader that I attempt crossword puzzles (thank you Eileen) or write important information on the back of my hand prior to entering a meeting or engagement. I’ve tried it all, but I think it’s just a given that Epilepsy, not to mention my medication, affects my memory and there is no turning back.
So, how to deal with it? Many of my friends are relatively understanding. I’ve texted and called countless times with a, “remind me who this might be” question in the heat of the moment. I think my husband has about had it with, “how do I know him/her” whispered in his ear. One of my oldest and closest friends (the friend who happened to have set me up with my husband) knows all too well that I have trouble remembering, so she goes out of her way, when telling a story, to over-explain and elaborate. Still, it’s frustrating beyond words.
It happened a week or so ago. I was with Hayden at a birthday party, and a woman approached me, clearly she knew me from the past. I usually can struggle through at least figuring out which category someone falls into – friend from high school/friend from college/former colleague/acquaintance of my brother, just by the initial ‘hello and how are you’. But this was a tough one. She was so kind and so warm…asking how Andrew was, how old Hayden is now, how my Mom was doing…acknowledging the loss of my Grandma in April. It was one of the biggies. I could NOT place her, and it was killing me. I even asked a friend who knows of my memory issues if she knew this person. She did not.
So, moral of the story…I think I have to become much more bold in my encounters. In other words, would it be so bad to say, “I’m so sorry, but my memory is just awful after everything I’ve lived through. Remind me again of your name.” I guess either I gather the courage to ask the question, or I could just wear a t-shirt that says, “YES, I have Epilepsy and my memory stinks. So, before you speak, remind me who you are!”
I think I’ll go with the “I’m sorry…” line.
This story really resonates…
A high school football player in Texas collapsed and died Saturday, reportedly after suffering a seizure. He was the star quarterback, had just thrown his second touchdown of the game, was an A student, and had a history of seizures. I didn’t know this young man, his coaches or his family…but my heart and my thoughts go out to his entire family and his teammates. I can only imagine the devastation and the despair they are feeling this morning.
From the quotes in the CNN.com post, it sounds like coaches never saw signs of seizures, but they knew this young man had a ‘history of seizures.’
“I didn’t know what to do,” said one of his coaches. “I just stood there, it was surreal.”
This particular situation aside, these types of tragedies are incredible learning experiences. How informed is your school, workplace, the gym you visit…any place you frequent…about seizure-safety? Do relatives you are close to know what to do in the event of a seizure? Do your friends know?
I was always quite proud of the fact that my former workplace–a massive office complex–had a poster hanging on my floor, with step-by-step guidelines of what to do in the event of a seizure. I pushed this after I suffered a grand mal seizure on the floor a co-worker’s office. Would company officials have taken it upon themselves to pursue this had I not instigated it? I’ll never know. But those of us who live with Epilepsy, and those who care for someone who lives with Epilepsy have the power and the ability to push the issue. It’s all about education.
I’ve said this before in other posts, but I love to reiterate…there are LOTS of programs out there to teach people about seizure-safety. You can download materials, ask your local Epilepsy Foundation affiliate to send you information to distribute. Many will come to your workplace or school…or even your home…to give a lesson on seizure-safety. I bet someone would even visit a big family gathering or dinner to do a 10 minute overview on seizure-awareness and safety! You can’t go wrong when it comes to informing people about seizures, but this takes determination and a willingness to share your condition with others. It’s not a bad idea to just send your friends the link–or post it on your Facebook page for all you are connected with to see. I just did. Heck, I’ve had a pen stuck in my mouth during an episode…and I want to make sure that never happens again.
That said, I’ll attempt to make it easy. Here are some good links…take your pick, and good luck when it comes to spreading the word, and perhaps protecting yourself and others.
I’m always up for activities that take my mind off of Epilepsy…at least on a personal level. Don’t get me wrong, I’m forever an advocate and I will go to the ends of the earth to make sure I spread the word. I’m always talking about living life with Epilepsy either on this blog, EverydayHealth.com, Facebook, Twitter…or the interviews I do.
Still, with weekly, and most of the time daily seizures…it’s pretty special when you can lose yourself in something, with someone, and for the moment you don’t have to think about ‘the E word’.
I have a friend who makes sure of this. She and I have been friends for several years and our daughters, both only children, have been friends since they were little more than 2-years-old, and we met in ‘Mom & Tot Class’. With the girls heading back to school this month (different schools), we committed to seeing each other once a week, with the girls, by planning various ‘field trips’.
She has a personal association with seizure disorders (family), so she understands many of the challenges and the issues I face. Still, she has this amazing ability to make me forget about Epilepsy, at least for a few hours when we get the kids together or when we do something, just the two of us Moms. And, it’s amazing…she doesn’t ignore Epilepsy, but she manages our friendship ‘around’ Epilepsy. In other words, I’m sure you might have the same experience, but I can classify my relationships in a few different categories:
–Those I’ve lost because I live with a chronic illness (extreme, yes…but it has happened)
–Those who walk on eggshells with me because they are petrified that I will drop to the floor at any moment with a seizure (I don’t see these friends much)
–Those who completely ignore the fact that I do live with Epilepsy because it’s much easier to not ask than to understand the ins and outs of this condition
–Those who treat me like any other wife, mother, friend, co-worker and occasionally ask how I’m feeling, but don’t limit activities, invitations, associations
If you do live with Epilepsy, or any chronic condition/illness for that matter…do you have friends who recognize your challenges, but are able to push the issues aside? Think…I bet you do. If so, make sure you recognize how lucky you are…
Each day, I receive at least one email or a Facebook link from someone, asking me to support a fundraiser that’s raising money to buy an assistance dog for a child in great need. Because so many of my Facebook friends are in the Epilepsy Community, most of the time the dogs are seizure alert dogs. I’m fascinated by these animals…their abilities, the needs they fulfill, the intense training that both dog and owner go through, and the improved quality of life they can provide to their owners.
And, it’s not just those with Epilepsy that a service dog can serve. Dogs can be hearing dogs, seizure alert dogs, service dogs for children with autism and guide dogs for people with visual impairments. The world of service dogs, their training and care, is a remarkable one.
That’s why…when I learned last week that people actually can order identification packages online to pass their dog-their pet-off as a service dog, in order to take them anywhere they want to go, including on an airplane, I was mortified, to say the least. As someone with a chronic disease (or condition, however you choose to describe Epilepsy), I know the power of a trained animal…and how they assist those with Epilepsy. I don’t have one, but I’ve seen them in action, and it’s profound and compelling.
According to Paws With A Cause, “A dog can be trained to (among other things) push life-alert buttons, help and/or comfort a person during a seizure and get help or retrieve the phone for the client. Although we do not profess to train dogs to detect seizures, several of our Seizure Dogs have, after several years with a client, developed the ability to alert their owner of an oncoming seizure.”
And there are people out there mocking this concept? It’s unbelievable, simply put. So, I did some research.
It’s true, if you are a business owner, teacher, restaurant worker or an airline employee, there’s not much you can do if you suspect that a dog is not a trained service dog. “The issue is extremely complicated…the ADA (Americans with Disabilities Act) is written so that people with disabilities do not have to ‘prove’ their disability to anyone,” according to Darlene Sullivan, Executive Director of Canine Partners for Life. So, abuse happens. It’s sort of a glitch in the system. Those people who have a legitimate disability and are lucky enough to have a trained service dog are essentially disrespected and insulted by the abuse of the system.
Living with a disability or a chronic illness, it feels as if these people are making fun of our challenges by ‘faking’ their need for a service dog. Trust me, I will trade places with anyone, any day, if you’d like to walk in my shoes!
So, what can we do? Not much, at least for now. But as advocates we have the power to change this. “A business is permitted to ask a person if they have a disability and if the dog is trained to assist them with that disability – they are not permitted to ask anything else,” Ms. Sullivan told me.
I hope in the coming months we can begin addressing this issue. I have a feeling we will. In the meantime, if this is upsetting you as much as it upsets me, I urge you to contact your legislators, your local Epilepsy Foundation and some of the assistance dog organizations for more information.
Here are some great ones that I’m in contact with:
We speak so often about our battles…those of us who live with Epilepsy. We are the ones who fight the side effects of the drugs, we must deal with the effects of the seizures, we tackle the stigma that Epilepsy seems to carry and the reaction so many people have when it comes to living life with Epilepsy.
How often do we stop to realize the challenges our caregivers face? I’m guilty of this, I admit. I have a wonderfully loving and amazingly committed husband who only knew me for 11 months before I fell mysteriously ill, doctors telling him it was encephalitis and meningitis that was attacking my body. After I awoke from a coma, Epilepsy was the diagnosis for me, and frankly it was somewhat of a diagnosis for him. Like me, he had never heard of this chronic illness. He did everything possible to research the condition itself and the treatment options. He too lives with Epilepsy, even though it doesn’t attack his body. I also regard our almost-5-year-old daughter as a caregiver of sorts. She knows what triggers my seizures and she has become quite the companion when we are alone…making sure Mommy feels OK and isn’t falling prey to a seizure.
We spend so much time lamenting over who doesn’t seem to care about our lives with Epilepsy. Why don’t people ‘Talk About It’? Why isn’t there more federal money available for care and research? Why does it bother people that I have this chronic illness? Why have I lost friends who don’t seem to understand how my life has changed? Do we spend enough time, thankful for what we do have?
Whether it’s a child or an adult, living with Epilepsy, there is a lot to tackle. I’m an intensely emotional person, and I take SO much to heart. I will yell, scream and cry if I realize that a relative or an old friend really has an aversion to me now because of my disease. But I know this can’t be helped. Only I live inside my body and know my own challenges. I must learn to choose my battles carefully. For every friend or relative who doesn’t have time to understand my world, there might be others who do. I cherish the chance to explain Epilepsy and my advocacy work to friends who do ask. It makes up for the people in my life who don’t ask.
I’m beginning to realize that many people who were close to me and are no longer in my corner might simply be afraid of the disease, and we all know what that’s like. So, I must remain positive and continue my advocacy work.
There are wonderful tips, straight from the caregiver’s heart, in an article from a 2009 issue of Epilepsy USA Magazine (The Epilepsy Foundation of America). Hopefully, we can all take a moment today and thank our caregivers.
This is an article we all should read:
Allegedly, a driver with Epilepsy in the Seattle area has been charged with vehicular homicide after slamming his vehicle at 70-mph into the rear of a vehicle at a traffic light, killing the man inside. No one will confirm if the driver was having a seizure at the time, but he DOES have a history of various traffic accidents. And, to add to the issues, the suspect’s blood was tested and he had high levels of anti-seizure drugs in his system.
So…what’s his excuse? Really. We are all aware of the rules and regulations as they apply in each state. Is it easy to not be able to drive when you have Epilepsy? No…but truly it’s a matter of profound safety, and if this is indeed true, we can all learn a great lesson or two.
I always nod my head when I’m speaking to someone with Epilepsy, and they tell me that they can drive because…’Even though they have seizures each day, they have an aura or feel them coming on so they can pull over if need be.’ In my opinion, that’s crazy.
The plain and simple truth is…if you have Epilepsy and if you have seizures regularly, hang up your car keys.
I understand the challenges, trust me. Work, errands, childcare, appointments with the doctor, freedom, a social life; heck even the optics of not being able to drive can be hard to handle. I have a nearly 5 year old little girl who has already been teased because ‘Mommy can’t drive a car.’ But, the way I see it…Mommy might take a life or two if Mommy got behind the wheel. So, I must accept the situation and make sure I’m organized and know who I can rely on to help me.
I hate to see these types of stories. Do we need better public transportation in many cities? That’s a resounding ‘yes’. Detroit is one of those cities! But still, I could never risk the lives of my family or the lives of those who are on the road near me.
If you have any questions about whether or not you should get behind the wheel, Epilepsy.com has a great state-by-state guide.
Don’t put yourself in the next headline like this one.
“If I had a million dollars…”
Wasn’t that a Barenaked Ladies song from years ago? I’m pretty sure that cd is resting in the massive pile which sits next to my desk, just waiting for me to download onto my ipod. But, that’s a whole different story! I don’t want to bore you!
So, what would you do with a ‘spare’ million? I’m betting many of you would donate to Epilepsy causes, research and assistance programs.
Since most of us don’t have that kind of money just laying around, how do we distribute the funds that we can donate? It seems as if there are SO many organizations, benefits, foundations that center on Epilepsy, cropping up all around the web. And, if you’re like me, everything has a certain appeal.
First, you must determine what is legitimate. You can ask a few simple questions, and DON’T be afraid to question the legitimacy of something! Merely because a group has a website or a Facebook page, it doesn’t mean that the funds will go directly to the cause you’re interested in. Where will the funds go? How much of your donation will actually be spent on programs and assistance? Is this information public? Ask to see the organization’s Form 990 or Annual Report. What is the history of the organization? I’m heavily involved with the Epilepsy Foundation of Michigan, an organization that recently celebrated its 60th anniversary. I know exactly where their funds go, and I’ve witnessed some of the amazing programs like Camp Discovery, conferences, EEG programs, etc.
I spoke to a virtual friend yesterday who has a very simple formula. “I have a yearly budget, and I am modest in my donations,” she said. “If I can give 10 dollars to a start-up organization that is a true not-for-profit, I feel great, but I also have my ‘regulars’ that I donate to each year. And, the key is, I never feel guilty about saying no, but more than anything, I must believe in their mission.”
That got me thinking…and typing. I composed my list this morning, and I’m now determined. I will donate to the organizations that appeal to me, after first checking on their validity, making sure I support their mission, and understand their goals.
So…what are your chosen Epilepsy organizations? Feel free to leave me a comment or post something to the Brainthunders Facebook page. I want to compile a list and make sure it’s posted on our Resource page. And, your thoughts and positions might very well help others!
MSNBC.com has some very good tips on choosing a charity in a 2006 post.
I admit, I push it to the back of my mind, even though the facts and the risks are clear. I typically think…there’s enough to deal with when it comes to the seizures themselves, the side effects of the drugs and the other complications that go along with Epilepsy…memory loss, cognitive challenges, language issues. But, it’s out there, so I told myself that it’s time to really delve into the issue.
According to the Epilepsy Foundation of America (if you know me, you know I’m a stickler for attribution-so many sites these days don’t do this), 30% of all people who live with Epilepsy also live with a major depressive disorder. The research also shows that people with Epilepsy who are depressed often are not diagnosed. About 50 percent of the time, they are never treated for the problem.
For many with Epilepsy and seizures, it’s top of mind, but it can be an embarrassing and many times debilitating illness. Let’s face it, we have enough to deal with, but you throw depression into the mix, and the possibility of taking anti-depression meds, and we might as well wear a sign that says, ‘Handle with Care‘.
I must tell you, I have never been diagnosed with depression, but it’s crossed my mind literally thousands of times. I wonder how many of us who wrestle with seizures really understand what depression is? Is there a certain kind of depression that we fall prey to? If we didn’t have the Epilepsy, would we have the depression? After all, I realize that my life isn’t like it was, pre-diagnosis or that it is in no way the life I had planned for. There are days when I cry, yell (actually scream) and question my husband as to why in the world he stayed with someone who has had 5 brain surgeries, her head shaved twice, can’t drive, many times can’t be left alone with our child, let alone our two dogs due to a ‘bad day’ of seizures. I think about it often. Could I have depression because I have Epilepsy?
I never suggest this to my epileptologist, and we are close. We email or text one or more times each week, typically I update him if I’ve had a bad bout with seizures or other issues (don’t ask me how many times I’ve misplaced or lost my magnets for my VNS!). But I’ve never once questioned him as to whether or not I should see someone about possible depression. But now I think I will. It’s not something I should fear, but I should realize that there is a great potential for this condition.
In the meantime, there is a lot of information out there on the web that relates to Epilepsy and Depression. Here’s a small selection:
It’s always great to speak to others about life with Epilepsy. As doctors continue to reiterate, everyone’s experience is so different and I’m convinced that we all gain knowledge and form some great friendships (both real-time and virtual) if we share our stories and swap information…in a positive way.
Paulette George is a wife, mother and author. She penned the book, Good Morning Beautiful, about her daughter Christina’s journey with Epilepsy and Autism. Suffering more than 100 seizures each day, Paulette and her husband eventually discovered the Ketogenic Diet and they began implementing the diet for Christina. Their journey is long and courageous, much like all of you. I spoke to Paulette a few days ago…
Brainthunders: Explain exactly why you wrote the book and what you hope to teach or show others.
To be honest, I first began writing our story in an effort to show how the heatlhcare system seemed to fail to meet the needs of people with seizures and autism by not providing all of the options for treatment. At the time, the book was titled, Rock A Bye Heart. As our story unfolded, I realized it was advocacy and the team approach to our daughter’s care that enabled us to obtain seizure freedom. The magical mix of a doctor partnering with parents or patients can make all the difference. This was much richer than sharing the negative side of things. The book’s new title, Good Morning Beautiful, reflects a magical time when all seemed lost, but through it all our daughter began babbling the chorus to the song, “Good Morning Beautiful” at the age of 4 1/2. it was a huge milestone!
Brainthunders: Can parents of children with Epilepsy truly teach other parents about how to manage their lives? If so, what are some lessons you can provide?
Absolutely! I believe that history is one of our best teachers, and in this instance parents who have already been down the same road can share what worked for them and they can provide life-saving and changing tips. When our daughter was having more than 100 seizures each day, I found a woman on a ketogenic diet mailing list whose own daughter had already been on the diet. This other mother gave me encouragement to go on, tips on how to manage the diet and when the emotions were overwhelming and it seemed too hard to forge ahead, her support and encouragement helped me to hang on to hope. Some of the lessons I can share…
-First and the most important in regard to medical care is to find a doctor willing to work with you. The greatest success is always found with a ‘team’ approach to your child’s care.
-Having another parent, who also had a child like mine, to share with, took some of the load off.
-No one knows my child better than her dad or me (it’s that God-given intuition), and when my gut told me something, I listened, even when others didn’t.
-I learned that special education is a gift for my child and not a curse, and trust me on this, if they offer it, take it. Free help never hurt anyone.
-The next is my own advice and I’m not so good at following, but hope you (do): Take time to get away. Even if it’s only an hour once a week. Find someone you can trust and who can handle an emergency with your child (just in case) and take time to breathe. If nothing else, sit under a tree and take in a view. Have lunch with your other half, or curl up in a bookstore with a cup of coffee and a good read.
-Last and so important: Pray! Martin Luther King Jr. once said, “Faith is taking the first step, even when you don’t see the whole staircase.”
Brainthunders: Any ketogenic diet thoughts? It seems so extreme to some people. What can you share with others about how it changed your life and your daughter’s life?
The ketogenic diet is one of my favorite things to chat about because it works. It has since the 1920′s when it was first introduced by the Mayo Clinic. However, with the introduction of anti-seizure meds in the 1950′s, the diet became almost prehistoric in a sense. Today, there are 3 million people suffering from epilepsy (in the U.S.), every year, 200,000 new cases are reported. Of those, 30 to 40 percent do not respond to medication. That is a huge number of children and adults who suffer from seizures with no relief. After our daughter tried every anti-seizure drug available, we traveled 1,200 miles to put her on the diet. And, when we did, it was as though a miracle happened before our eyes. She became seizure-free within days and precious development time was saved.
The diet did seem extreme at first, but after we got into a routine, it was easy to manage and Christina loved her meals. My husband would help; we weighed and measured each one according to the dietician’s directions. Our story doesn’t end here, but the ketogenic diet saved our daughter Christina’s life. Without it, she would not be the thriving, healthy 13-year-old she is today.
If you are considering the diet for your child, I would suggest finding a doctor and dietician who know the diet well. Please know that placing your child on the diet may be something you would have to request, and perhaps even push for as not all neurologists know the diet or offer it as a treatment option.
Brainthunders: If you can pass along one sentence, some words of wisdom, about living life with Epilepsy, what would it be?
It would be this…Don’t give up! Thomas Edison once said, “The greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.”
You can learn more about Paulette George and her book, Good Morning Beautiful by visiting her website. You can also listen to the song, “Good Morning Beautiful” by Steve Holy.
Create your own video slideshow at animoto.com.