Progress

One foot in front of another.  

One. Small. Step. At. A. Time.

Maybe, just maybe, we will get there someday.

A Ray of Light in the Darkness

I have touched briefly on the years of Hell we went through when the Blue Jay was little - actually from the time she was 13 months until she was 10 years old. Although seizures may not have touched our lives, directly, for the past seven years, those memories are not just burnt into my brain but a part of the very fabric of our family.

Such is the laser-story of the background to my reaction to what I discovered on FaceBook yesterday. [Perhaps FaceBook does serve some useful purpose, after all. Who knew?]

So what did I discover that has so completely garnered my attention? See for yourself.




You know, a very large part of me has to wonder why ... why is the use of such a discovery a big deal at all? Why are families forced to pack up and move across the country to get their child the treatment they need?

Perhaps it is the fact that I live in the Great White UP, where we have a system for the approval of the use of medical marijuana. I gather the situation is a little more cloudy in the United States.

Whatever the reason, I can tell you that without a moment's hesitation I would have tried cannabis for the Blue Jay in our darkest days. Yes, for the part of that time, she was only a toddler, but those seizures were robbing her of her life.

Although the situations are not identical, I strongly identified with the two families profiled in the video above. When we were living through our own personal nightmare, the ketogenic diet was the new kid on the block, looked down upon by medical professionals, and not just completely misunderstood by the general public but pretty much totally unheard of (essentially a step down from being completely misunderstood).

The food was much too "unpalatable", how can a child possibly survive without going to birthday parties, it's a regiment that is impossible for a family to maintain, no child will put up with it and, of course, it was much, much too unhealthy - we heard it all and I have a response for each and every one of them, although I won't bore you with that at the moment. Let's just say that families do what needs to be done and can be incredibly innovative and creative when need be. And done with a little care and attention, there is no need for the ketogenic diet to be so unhealthy.

The diet was our "miracle drug" (although, of course, not a drug) at the time. And I have never regretted it for one moment. Not when I fought with the doctors for months to get them to agree to merely try try it; not when we fought daily with the Blue Jay, herself, when we initially tried to get her to accept it and worked for months with a child psychologist to convince her to actually eat the food; not when, after going almost two years seizure-free on the diet, we lost control and essentially had to start all over again; and not the second time we lost control thanks to a doctor's neglect and the Blue Jay ended up in the hospital, not just actively seizing again but with dangerously low potassium levels.

Hard? Hell, yes.

Sorry, we gave six years of our and the Blue Jay's life to it? Hell, no.

So now you have a much more complete background to my response to the above video. Perhaps that's why I can't see the issue with using medical marijuana in this way. Instead of horror or concern, I was elated to learn of a new epilepsy treatment and fascinated to learn how, instead of growing plants to maximize the THC (the chemical that makes you "high") content, they actually manipulate to increase the CBD content, which is the compound that is effective in stopping the seizures.

The original post I saw on FaceBook, accompanying the above video, read like this:

Washington Post covers medical cannabis for pediatric epilepsy. What are your thoughts? How far would you go to save your child? We were happy, and a little nervous to tell our story so publicly. But I feel it is absolutely necessary. Families need to know this is an option, and they can work with their medical team to make the best decision for their child. ♥ Heather

I must confess I had some trouble grasping exactly why this family was at all nervous to tell their story, why they weren't, instead, just singing it from the rooftops.

But, hey, I am a lawyer by training so not totally clueless - yeah, yeah, I get that whole "illegal in some states" thing compounded with the likely cries of "Oh my God, what kind of parent would give children as young as toddlers marijuana on a daily basis? For heaven sake, call Child Protective Services immediately!". There's some in every crowd, you know ... but that, too, is a story best saved for another day.


So. Shortly after watching (and raving) about the above video, I found this one in my news feed.



Now I might disagree with the good researcher when he states that they know how most of the current anti-epileptic drugs work or don't work (and, by the by, he actually contradicts himself later in the interview when he notes most of the most effective anti-epileptic drugs were discovered by accident and they don't have clearly defined mechanisms of action for many of today's drugs), but to me, that is much less relevant than his comments on the "ethical issue" of giving marijuana to toddlers

After the interviewer notes that at a "headline level", the issue was still very much giving medical marijuana for toddlers, he asks the good doctor if he had any "ethical" issues with this. Apparently he does, "very much so", in fact, based on a long-term New Zealand study of people who had used marijuana, which found that the only group that showed permanent cognitive damage was moderate to heavy users of marijuana during adolescence.

Like it or not, not exactly a surprising result. But as noted in the interview, this study was looking at the effects of THC. And as noted in the first video, these plants are being bred to specifically lower the level of THC and increase the level of CBD.

I can understand accept that doctors require their double-blind studies and believe they "need to know" how/why a substance works before recommending it to their patients. But it's one thing to clinically speak of the 35% of patients with "difficult to control seizures" and quite another to actually be one of that 35%.

Because, trust me, until you have actually lived that, You. Have. No. Clue.

I wonder how many people will only hear and remember those headline comments. I wonder how many people out there will actually listen to the entire interview, the defining moment of truth of which comes only at the end

When asked if he, personally, would use marijuana for his child, the answer was more than telling.

If that were my child and I had a child with difficult to control seizures and knowing the risk of uncontrolled seizures, if I had something that would control those seizures without any obvious major adverse effects on the child, that would be, as my personal decision, I would do it. Not as a clinical recommendation, as a parent myself.

. . . 

Now if that was a child of mine and somebody offered me a less than perfect but effective treatment, I am going to say yes to it.

Why? Because the good doctor is well aware of the risks of status epilepticus  and SUDEP (Sudden Unexplained Death in Epilepsy - a phenomena they tend not to tell parents about, by the way) and that the risks of these things happening dramatically increase in a person with poorly controlled seizures.

End of the day (and you will, no doubt, be happy to know, end of this post), the bottom line in is that if a new treatment for epilepsy that has thing kind of success rate can be found, naysayers, busy bodies and governments need to get the hell out of the way. Because, believe me, unless you live it, you. have. no.clue.

So

Purple Day is fast approaching.

And Purple Day is a bit of a big thing around here, as you might recall.

Meaning right at the moment I am up to my eyeballs in posters, buttons, wallet cards, Purple Daisies, brochures, pamphlets, bookmarks, pens, stickers ... the list goes on.

And cupcakes, of course ... right, never forget the cupcakes!

So while we here at Free Falling prepare to do our small part in the grand endeavour to paint the world Purple ...

Please remember to Wear Purple on March 26th.

And have A Very Coole Purple Day.

WTF??!!

Ever have one of those moments when your life is chugging along like normal and all of a sudden you see, hear or read something that makes you go ... WTF?!  Did I just see/hear/read that right?!

Well, it happened to me as I flipped through today's paper and, quite frankly, I didn't don't know what to make of it.

So let's play a little game and see if anyone else sees anything [glaringly] wrong with this picture?

FURUDAL, Sweden — Mike Danton played the hero in his opening game of the Swedish league.

The former NHL player, who served five years behind bars for a failed murder-for-hire plot, rushed to the aid of IFK Ore teammate Marcus Bengtsson, who was convulsing on the ice after a hard hit in Sunday's season-opener.  

~  ~  ~

According to Danton's blog, Bengtsson took a late hit with about 14 minutes left in the game against Soderhamn/Ljusne. He lay on the ice suffering convulsions for six or seven minutes.

``As his eyes continued to roll into the back of his head, his mouth finally opened a bit,'' wrote Danton, who is captain of the Swedish team. ``It was at that time that I jammed my fingers into his mouth and clawed his tongue.''

Anybody? Anybody at all?

Now don't get me wrong, I've been rather impressed with this guy for a while now. I'm not a big hockey person by any stretch of the imagination but I followed with interest the story of this former NHL player after he was released from prison for conspiracy to commit murder following an attempted murder-for-hire plot.

What grabbed my attention was that following his imprisonment, he returned to Canada and enrolled at Saint Mary's University in Halifax. Where, yes, he played hockey. But where he also committed himself to his studies, working towards a degree in psychology and maintaining an A average.

So back to today's story ... can anyone tell me what caused my jaw to fall to the floor?

Let's try this ... does anyone know any basic first aid? You know, like the kind Danton says he picked up learned in prison?

First aid for seizures is pretty basic and straight-forward.  It's not like you need any specialized skill to help in such a situation.

1.Stay calm

2.Prevent injury
During the seizure, you can exercise your common sense by insuring there is nothing within reach that could harm the person if she struck it.

3.Pay attention to the length of the seizure

4.Make the person as comfortable as possible

5.Keep onlookers away

6.Do not hold the person down
If the person having a seizure thrashes around there is no need for you to restrain them. Remember to consider your safety as well

7.Do not put anything in the person's mouth

Contrary to popular belief, a person having a seizure is incapable of swallowing their tongue so you can breathe easy in the knowledge that you do not have to stick your fingers into the mouth of someone in this condition.

8.Do not give the person water, pills, or food until fully alert

9.If the seizure continues for longer than five minutes, call 911

10.Be sensitive and supportive, and ask others to do the same

Anybody? Anybody at all?

How about the FACT that you are NEVER suppose to put anything (including your hand) in a person's mouth during a seizure?

Not only is such a move dangerous to the idiot person trying to "help" (picure somebody in the midst of a seizure suddenly chomping down on your hand and not letting go - that's right, I said Not. Letting. Go.), but it can actually harm the individual who is seizing - jaw and face muscles often tighten during a seizure and if this happens when something is in their mouth, they may break and either choke on or swallow the object or, if you're lucky, maybe they will only break their teeth.

Come on, people, the only thing you accomplish by sticking anything in a person's mouth during a seizure is to obstruct airflow, which is potentially life threatening. 

Sound like a plan, Stan Mike?

Now I know it seems like no TV producer out there in La La Land can get this straight, but still ... Really?

It's too bad, really. Dalton could have actually been helpful and useful had he turned Bengtsson on his side (as other players did later), to prevent saliva from blocking his airway and help him breathe more easily. Trust me, Mike, if the guy was having trouble breathing, it wasn't because of his tongue.

And he could have helped people with epilepsy in general by explaining to the media after the fact exactly why he HADN'T tried to put his hand in the poor man's mouth!

So tell me, please, what kind of first aid course, supposedly certifying you in "first aid response" teaches a person to "jam their fingers" into the mouth of a person convulsing and "claw their tongue"?

And how, exactly, is it possible for this story to get international coverage without anybody picking up on the fact that it was only by virtue of simple dumb luck that our "hero" didn't seriously hurt himself or the other player?

So, yeah, as I was saying ... WTF??!!

Better Late Purple Than Never

Some might say Purple Day 2011 has already faded into the sands of time. I, however, beg to differ.  After all, as long  the EANS will be the beneficiary of the upcoming Lions Breakfast this Saturday, courtesy of Purple Day, I say it's still fair game.  Which is a good thing, considering I haven't had an opportunity to do any Purple posting until now.

So. Purple Day. 2011.

It having been a bit of a crazy few months in the Free Falling world, we didn't manage to paint our little corner of the world quite as purple as we did last year.  But we still made a respectable showing, I believe.

Horton High School once again took up the cause, with the Blue Jay (this year, with the help of the Kit Kat)  and her classmates again selling purple cupcakes, handing out information and taking donations.  She also had the chance to make a school-wide announcement and explain the purpose of Purple Day before the big day, which was nice.  And it appeared that the whole school pretty much really got into the spirit, with Purple Day posters lining the walls and a sizable portion of the student body decked out in their finest purple gear.

We hit the local Mall again this year, actually, we spent all day Saturday as a family affair at the Mall, where we once again sold bracelets and purple cupcakes, handed out information, pins and ribbons and took donations.  Mucho donations.

Well mucho, considering I have never approached our Mall adventures with the intent of them being fundraisers; their primary purpose is to educate people and get a conversation going.  So it was very gratifying to see now only how many donations we got (and how many $20 donations, at that!) but also how many more people were aware of Purple Day this year than last.  The word is clearly getting out there.

Our family has struggled through a long and often painful journey with epilepsy.  Not as long, not as painful as that some families have and will continue to go through but certainly longer and more heartbreaking than any child or anyone who loves a child should have to face.  And no matter what the future brings for the Blue Jay, I will always be eternally grateful for the past several years of relative peace.  The Blue Jay's life is still not easy (and likely never will be) but things are so much easier for her (and, thus, all of us) when the ugly seizure monsters are held at bay.

And yet, really, I think it's the very fact that the Blue Jay's seizures are so well-controlled at the moment that motivates me to be so involved with Purple Day.  True enough, were it otherwise, I would no doubt be equally but differently motivated to take up the cause, both on her behalf and for so many others.  But for now, it's the fact that we have it so much better than so many others, that we have found, even if turns out to be only temporarily, our magic panacea for her seizures that makes me appreciate how lucky we are and how wrong it is that others out there are still in the position we once were.

I suppose we will always be a Purple family.  Actually, perhaps more accurately, I truly hope that we will always be a Purple family.   There are many, many "good causes" in the world and no one person can take them all on.  But person by person, family by family, we all can make that extra effort to support and promote at least one. 

Epilepsy has touched our family deeply and will always leave a scar.  But I believe it has also left us with something else, something positive and good and pure - the requisite empathy that moves compels us to step up and contribute our small piece to the far larger effort needed to help others who continue to fight a daily battle, not only with this often devestating neurlogical disorder, but with the equally, if not sometimes more damaging, effects of public misconception and the resulting social stigma.

So what cause is personal and near and dear to your heart?  And, more importantly, what are you doing to help make life better for those who live it?

Life Through a Purple Haze

Wow, I can't believe that Purple Day is tomorrow. And I haven't even posted on it yet!

Not because I've forgotten about it or we've just been sitting around on our purple bottoms -no way!

It's just that we've been too busy doing stuff for Purple Day.

Last Saturday was spent at our local Mall with a Purple Day table. We sold bracelets, handed out lots of purple pins, ribbons, cupcakes as well as information on epilepsy and had some great chats. It was so cool to see people walking around the mall wearing the Purple Day pins and the epilepsy ribbon. Especially since the vast majority of them had never heard of Purple Day before.

And besides painting both blogs purple, we've had our local Village Council proclaim March 26th as Purple Day, we have three local schools (elementary, middle and high school) participating and a local day care is involved in the Purple Day Bunny Hop.

Oh yes, the Blue Jay will also be selling purple cupcakes (with the help of some of her friends and the resource staff) at her high school tomorrow, there will be special PPP draw for the kids wearing purple at the middle school (grand prize being a Purple Day Cake for that student's class) and, yesterday, the Kids on the Block landed at the elementary school to put on a presentation for the Grade 5s at the elementary school.

So that's my story and I'm sticking to it.

Now for any of you wondering what this Purple Day is and what all the fuss is about ... you should have been here last year! [Just scroll down through that last link]

Just teasing ... Purple Day is about a very special young Nova Scotian. It's about speaking up and stepping forward. About not being afraid. About bringing epilepsy "out of the shadows". And about what one person can do when they make up their mind to something.

9 year old Cassidy Megan didn't want to tell her classmates that she took seizures. That she had epilepsy. She was afraid they would make fun of her.

But when members from the Nova Scotia Epilepsy Association came to Cassidy's classroom and did a presentation, it empowered her to speak up for the first time in front of her classmates and admit that she had epilepsy.

And yet Cassidy went beyond that. She realized that people needed to learn more about epilepsy, "especially that all seizures are not the same and that people with epilepsy are ordinary people just like everyone else". She also wanted kids with epilepsy "to know that they are not alone". And with this realization, Cassidy became a spokesperson for epilepsy.

She went to the principal of her elementary school and asked if they could create and celebrate Purple Day ~ a day when everyone would wear purple to increase awareness about epilepsy. With the help of her mom, Cassidy began contacting politicians, celebrities, non-profits and corporations, asking them all to spread the word about Purple Day and epilepsy.

And with that, Purple Day was born.From students in classrooms around the world to Paul Shaffer on the Late Show with David Letterman, people wore purple to spread the word about epilepsy on March 26, 2008. Cassidy was interviewed by news outlets across Canada and was even featured in a South African epilepsy newsletter.

Last year, we brought Purple Day to the Annapolis Valley. And to the combined approximately 700 students at a local elementary and middle school. And like I said above, this year we expanded it a little.

How can you fail to be be awed by a story that starts with a 9 year old Nova Scotian girl and ends with purple tea parties and pizza parties, purple cocktail parties and fundraising events, purple art shows and pool competitions, a Calgary City Hall Purple Day Proclamation Celebration and a purple-lit CN Tower and Niagara Falls?


So on behalf of the Blue Jay and our family and the 300,000 Canadians and 2.5 million Americans and countless others around the world who live with epilepsy each and every single day, we offer a very heartfelt thank you to Cassidy.

I wonder how many people are aware that epilepsy affects more than twice as many Canadians as those who live with cerebral palsy, muscular dystrophy, multiple sclerosis and cystic fibrosis combined or that one in 100 people has epilepsy? I wonder how many people are aware of many epilepsy issues?

Well, thanks to Cassidy Megan, I am sure the answer is many more now. And that number is growing every year.

Enough Said

"Epilepsy strikes and kills about as many people every year as breast cancer, which gets five times more federal funding."


Watch CBS News Videos Online

More Americans are suffering from epilepsy than Parkinson's, multiple sclerosis and cerebral palsy combined.

*Please watch the video*

H/T to Take Five

Stunned

I've often found that following the Google links which have led the occasional passer-by to these, my humble digs, has led to interesting results. That I could discover some interesting, totally unknown stories or blogs.

But what I discovered today has left me totally stunned.

I have long been aware that it is necessary for people with epilepsy to be closely supervised in the water. For example, people with epilepsy can easily drown in the bath water should they take a seizure. And thus, when the time came that the Blue Jay could finally show some independence in her personal care, we taught her to shower and have kept away from baths.

The Blue Jay loves the water. Always has. Never an ounce of fear. So every time she happily ran off to summer camps, I warned the staff that she required one-on-one on the water due to the possibility of a seizure. 'Not a problem', I was always told. Although thinking back on it, something tells me that once she was little older (perhaps 9 or 10) that supposed 'one-on-one' became something closer to the camp leaders just keeping a little closer eye on her than the other kids.

When we were away, camping or at a hotel, the Blue Jay was not allowed to just go down to the pool alone. Initially, either my husband or I would be there, if not swimming, at least sitting beside the pool watching her. As they got older, I have often delegated the job of keeping an eye on the Blue Jay in the water to her younger sister.

And she has become a darn good swimmer, competing yearly (and practicing weekly) in the Special Olympics.

And so, I have done a good job. I thought.

Until today. When I read this.

A 14 year old boy who had had epilepsy from the time he was 7 drowned in a lake on a school outing.

He had always previously been accompanied by his parents when he went swimming. On this occasion he went on an unplanned swim in a lake with 10 or 11 other children and about 15 teachers. He was observed playing happily with the other children, throwing water about. He then disappeared from sight. The teachers did not suspect that he had drowned until the party was about to leave. Divers were called and they found him in about 1.5 m of water. There was a small cut above one eye but no other sign of trauma. His arms were crossed over his chest, as had previously been observed by his parents when he had a tonic seizure. The coroner's verdict was death by drowning secondary to epilepsy.

His parents contacted the British Epilepsy Association and were informed that swimming is good for people with epilepsy and should be encouraged but should be supervised. They asked the question: “What does this mean?”

His parents said, “The supervision should be one-to-one. He should have had someone in water with him. There was no chance for anyone to save him. I think we were blissfully ignorant. I know now he could have had a seizure in the water and I would have been totally unprepared for it. I'm not sure even now that I'd know what to do to resuscitate him. The whole business of epilepsy should be explained properly. You almost need someone to go through it with you.” His parents also commented that children with obvious physical disability tend to be better supervised than those who are able, like their son was.

And so, now I sit here, stunned. With more questions than answers.

The case study explains how during a particular type of seizure, known as a tonic seizure, the muscles of the chest wall contract and much of the air from the lungs may be expelled.

If such a seizure occurs while a person is swimming, the average body density may become higher than the density of the water, causing rapid submersion. When the muscles of the chest wall relax, the person will still be submerged, with the result that water, not air, will enter the respiratory tract and the person will not rise to the surface.

And how a person supervising someone who takes tonic seizures must be aware that the person may sink quickly and may be difficult to rescue because they will then be heavier than water. That the person supervising should be capable of taking the necessary action should a seizure occur, implying that they should be physically strong enough to rescue the swimmer, competent in the water, and properly instructed.

So. Obviously what we have been doing is not good enough. We have been very, very lucky. There, but for the grace of God, indeed.

And yet.

And yet the Blue Jay is a good swimmer. A very good swimmer. A competitive swimmer. And an adolescent who struggles demands her independence. Independence which is, by necessity, much more limited than that of other teenagers her age. The very thought of attempting to take away any of that hard-won and well-earned self-sufficiency is mind-boggling.

But what good is independence if you're not alive to enjoy it, you ask?

Good question. Very good question.

A Day 48 Hours in Purple

Well, that was fun.

No, really it was. A little tiring but a lot of fun.

Purple Day officially hit the Annapolis Valley. And it was pretty well received, if I do say so myself. So well, I can't wait to do it again next year.

I did an interview Wednesday morning at 8:10 on Magic 94.9, one of two local radio stations. The host of the morning show was great and kept promoting it all day long. And the other radio station, K-Rock, also did a great job of promoting it. Thanks, guys!

Then I scurried off to ye olde computer to try to put together what I was going to say for my presentation at the elementary school. Kit Kat and I had put her presentation together on the previous Sunday so at least I had something to work off of. But her presentation (including the five public service announcements about epilepsy and Purple Day) was only 10 minutes long. Mine had to be a fair bit longer.

But partway through putting that together I looked at the clock and realized I better skedaddle off to Video World to see if they could do anything to fix the DVD that contained four of the PSAs. The DVD that kept skipping. That made it look as if the PSA was actually having a seizure.

Fortunately they could but they wouldn't be able to get to it for a few hours. As in it would be ready to be picked up just before it was time to head to the elementary school. So I left the DVD there and stopped in at the grocery store on the way home. To pick up two items. Honest, only two items. $62, several bags and precious wasted moments later I made it home and got back to work on my presentation.

Then pack up all the stuff (between the two schools we had over 700 bookmarks and Purple Day lapel pins to give the kids and about 10 folders with epilepsy information for the classroom teachers) into the car, pick up Kit Kat at school, pick up the DVD and off we went to the elementary school.

We only had one class of Grade 5s to speak to but the presentation went well and the kids were full of questions about epilepsy. Made a quick pit stop at Subway for lunch and then it was time to head to the middle school.

I was so proud of Kit Kat. She is a shy kid. A very very shy kid. And although all kids of her age (she just turned 13) worry about fitting in and not standing out of the crowd, I find she really takes it to an extreme. But she had volunteered demanded that she be allowed to do the presentation at the middle school. Apparently some of the kids in her class made fun of seizures and that did not impress her one little bit. I was really surprised when she said she not only wanted to get up in front of the school and talk ... but also identify herself with epilepsy in this way.

Well, get up and speak she did. And she did a great job!

I could tell the principal was impressed when not only did he ask the kids before she spoke to think about what it would feel like for one of them to get up in front of their peers, in front of the whole school, and talk but also after she was done, he had thanked her and made some announcements, he again pointed out what she had done and asked for another round of applause.

I must tell you when I walked in the door around 2:00 that afternoon though, I was wiped. I have been working a lot lately and I am my own worst enemy when it comes to sleep, I just don't get to bed early enough, and after all that running around in the morning, when I finally got home I felt like I could fall over. Fortunately I had an hour before I had to take the Blue Jay riding. An hour to just veg in front of the TV with my feet up.

Kit Kat told me that evening that when she was leaving school later that day she saw that the art club had transformed the bulletin board outside the office into a Purple Day board. When she asked them what they were doing, they said that she had inspired them. I thought that was so sweet.

So yesterday was Purple Day and I would say it was a pretty good one. When I drove about half an hour further down the Valley to my hair appointment, I asked if anybody in the shop knew it was Purple Day. I didn't expect anybody would. But surprisingly my hairdresser did, she had heard it on the radio and her first customer that morning had also told her about it.

And when I went to the bank today I asked one of the tellers (whom I know well) if she knew it was Purple Day yesterday. She laughed and said she hadn't but she had worn purple. And when she walked in the bank, one of the other women was wearing purple and told her about Purple Day.

So I think we did pretty good for our first Purple Day in the Valley. I can't wait for next year. After all, I figure if the Calgary City Hall can have a Purple Day Proclamation Celebration, surely our village can officially proclaim Purple Day too. They just don't know it yet is all.

And, lest we forget, the most important thing of all, Cassidy, hon, you done good!

Cassidy Megan smiles as she is presented with a purple bouquet
by classmates during an assembly marking Purple Day
at Atlantic Memorial Terence Bay School in Shad Bay on Thursday.
Cassidy, a Grade 4 student who has epilepsy, created the day
at the school last year to raise awareness of the condition that she
and thousands of other Canadians have. Since that time, Purple Day
has caught on internationally. (TIM KROCHAK / Staff)

Going Purple ... With Pride

Epilepsy aka the seizure monsters have played a big role in our family's life. For a very long time.

I've written a little bit about our family's experience with epilepsy here. And here. And here. And most recently here.

The Blue Jay had her first seizure when she was 13 months old and she was diagnosed with a "seizure disorder" when she was 2 years old. Despite the doctor passing me a pamphlet from our provincial epilepsy association when he gave us this diagnosis, it was quite a long time before I actually put two and two together. And realized that "seizure disorder" was just another way of saying epilepsy.

It's amazing how huge language is. How it can so easily hurt. Come with so many stigmas attached. Can be used to build someone up . Or tear then down. Sometimes without the speaker even realizing it.

And so it is with the word epilepsy. There's a certain stigma attached. Although it doesn't carry as much baggage as the words "mentally retarded", for some people there's still a certain sting to it. And if you doubt that, try the word "epileptic" on for size and see if you feel any differently. Think of it applied to your son or your daughter. Or yourself.

And so it was understandable that 9 year old Cassidy Megan didn't want to tell her classmates that she took seizures. That she had epilepsy. She was afraid they would make fun of her. Can you blame her?

And yet time and again we have seen that from many dark moments, a light can spring. And so it was when members from the Nova Scotia Epilepsy Association came to Cassidy's classroom and did a presentation. It empowered Cassidy to speak up for the first time in front of her classmates and *admit* (yes, admit) that she had epilepsy. And that by itself, were that the end of the story, would have been admirable.

But Cassidy went beyond that. She realized that people needed to learn more about epilepsy, "especially that all seizures are not the same and that people with epilepsy are ordinary people just like everyone else". She also wanted kids with epilepsy "to know that they are not alone". And with this realization, Cassidy became a spokesperson for epilepsy.

She went to the principal of her elementary school and asked if they could create and celebrate Purple Day ~ a day when everyone would wear purple to increase awareness about epilepsy. With the help of her mom, Cassidy began contacting politicians, celebrities, non-profits and corporations, asking them all to spread the word about Purple Day and epilepsy. And with that, Purple Day was born.

From students in classrooms around the world to Paul Shaffer on the Late Show with David Letterman, people wore purple to spread the word about epilepsy on March 26, 2008. Cassidy was interviewed by news outlets across Canada and was even featured in a South African epilepsy newsletter.

I am sad to say that I was totally unaware of Purple Day last year. My loss, I'm afraid. But this year, I am proud, along with my husband and my children, to be a vocal supporter of Purple Day.

Come Thursday, we will be proudly wearing purple, along with (hopefully) most of the combined approximately 700 students at a local elementary and middle school. That's hoping the Kit Kat and I are successful in our brief presentations on Wednesday to explain to the students why Purple Day is so important. And, equally, why it is so cool. And I found out today that I just may be lucky enough to spread the word on one of local radio stations, too!

After all, how can you fail to be be awed by a story that starts with a 9 year old Nova Scotian girl and ends with purple tea parties and pizza parties, purple cocktail parties and fundraising events, purple art shows and pool competitions, a Calgary City Hall Purple Day Proclamation Celebration and a purple-lit CN Tower and Niagara Falls?

On the internet, people like to talk about videos or posts going viral. Might I suggest that thanks to Cassidy and, this year with the help of the Anita Kauffman Foundation, Purple Day has indeed gone viral.

Congratulations, Cassidy. You truly inspire us all. If there was ever a person to prove that one child person really can make a difference, it is you.

And on behalf of the Blue Jay and our family, the 300,000 Canadians and 2.5 million Americans and countless others around the world who live with epilepsy each and every single day, a very heartfelt thank you.

I wonder how many people are aware that epilepsy affects more than twice as many Canadians as those who live with cerebral palsy, muscular dystrophy, multiple sclerosis and cystic fibrosis combined or that one in 100 people has epilepsy? I wonder how many people are aware of many epilepsy issues?

Well, thanks to Cassidy Megan, I am sure the answer is many more now.

The Last Day of the Rest of Your Life

Can anything be worse than the pain of losing a child?

Personally, I feel like I know a bit about grief and mourning lately. But I can't even imagine, can't even begin to fathom, the pain of losing a child. It's beyond me.

I know of parents who have survived that kind of loss. Who have, in fact, not just survived (which I am afraid might well be beyond my capabilities) but even thrived, managing to transform that tragedy into something amazingly beautiful. Something that helps other children and their families. I am honoured and humbled to count such people amongst my friends.

But imagine not just losing your child. Not just. Like that could not possibly be hard enough. Imagine being accused of killing your child. Imagine being convicted and sentenced for your child's death. Imagine spending the past 14 years in prison.

For killing your child. Incarcerated for 14 years. As you mourn the loss of your child's life. And the loss of your own. Because you know what no one else seems to recognize. That you, too, are an innocent victim. That you could never, you would never, you did not harm your child.

That, you, yourself, are the innocent victim of someone else. The pediatric pathologist from hell.

On Thursday, 14 years after being convicted of killing her two-year-old son, Marquardt was granted bail.

Though the courts haven’t yet decided if they’ll hear her appeal, Marquardt was beaming after being released.

"Today I finally have my day," Marquardt said outside the Ontario Court of Appeal, struggling to catch her breath through her tears. "This is my day. I’m out. I made it."

She was the last known parent who remained behind bars based on the testimony of Dr. Charles Smith. Marquardt was convicted of second-degree murder in the death of her son Kenneth and was handed a life sentence in 1995.

She said she found the boy tangled in his bedsheets, but Smith said he was mothered or strangled.

Marquardt’s lawyer James Lockyer said not only did she not kill her son, but no crime was ever committed. Kenneth had seven documented trips to hospital for seizures, Lockyer said.

Smith’s findings have since been rejected by six forensic experts, including one who said the epileptic boy could have died from a seizure.

"Pathology can no longer determine the cause of Kenneth’s death," Lockyer said outside court.

"There’s every reason to believe that he died as a result of seizures that he’d suffered from all his life."

SUDEP, or Sudden Unexplained Death in Epilepsy, is not only a tragedy, but also, exactly what it says.

The sudden. Unexplained. Death. Of a person with epilepsy. Often in their sleep. Uusally without any evidence of a seizure having occurred. But then again, if the person was asleep (and alone), who would know for sure whether or not there had been a seizure?

It's not something that's talked about a whole lot. Not information that many parents of children who experience seizures are made privy to. 'No need to upset them. To scare them. About, you know, something that will never likely happen', the thinking goes.

Not that common, perhaps. But SUDEP does account for 10% of all epilepsy-related deaths. Admittedly, 85% of these fatalities occur between the ages of 20-50 years. Still, the incidence of SUDEP stands at approximately 1 in 1000 people with epilepsy per year which is at least 10 times of the sudden death rate found in the general population. Which means that if you have a diagnosis of epilepsy, you are TEN TIMES more likely to have "Sudden Death".

Yeah. That's what I said.

Perhaps that's what happened to Tammy Marquardt's little boy. Perhaps it was something else. But either way, it appears that there was no credible evidence that his mother was at fault.

I can only wish her well, hope that her legal troubles are soon over and offer her my deepest sympathies, both for the loss of her child and for the past 14 years. And struggle with the realization that yes, there is something worse than losing your child. That would be losing your child and then being accused of and convicted for his murder.

And as to the other tragedies in this story, the life of a two-year-old little boy snuffed out and the higher risk of death for persons with epilepsy ... I can only offer this.

Thursday, March 26th is Purple Day.

Which I will be blogging more about soon. But as a recent slogan I've seen says so well ...

"A cure may be found someday.
But someone needs your help today".

End of The Line, Part III

She gets the Bearamedic:

Nova Scotia's Paramedics gave me a BEAR HUG!

Me? I get that old run over my a really big truck, think my body is going to melt into a puddle now kind of feeling. Ain't life grand ... NOT!

I guess maybe I jinxed it. The picture says it all ...

The End of The Line, Part II

Part II, because we finally did it.
A week later than planned but, hey, why rush through life, right?

No, seriously, the Blue Jay was just so irritable and out-of-sorts last weekend that we decided to wait another week. And so we did. And here we are. So for anybody wondering what the heck I am talking about, it goes something like this.

The Blue Jay, you see, has epilepsy. Has for a very long time, like the past 13 years. And its been a very long, very rough ride for the most part. When 11 seizure meds failed to even touch her seizures (and only gave us some nasty unwanted side-effects) we finally tried the ketogenic diet in 1997. It was truly a miracle, a gift from God, as the Blue Jay went seizure free for the first time since the nightmare began.

We had a good run there, of almost 2 years. Ran into some problems, lost control. Regained it again and she went over a year and a half seizure free. Another miracle. Then we lost control again and at that point she started really fighting the diet again. She had fought it hard in the beginning, resulting in nine months of hell, but we had struggled through through that. The second time around, when it no longer seemed to be working for us after six long years, we decided it was time to move on.

Although I should say that I am and always will be eternally grateful for the keto diet. It was the first and only thing that ever gave the Blue Jay (and by extension, us) relief from the seizures. It was more than worth the work, the time and the effort that went into it. Unfortunately, the diet tends to get a short shrift sometimes in medical circles. Its undeserved. Although its must easier to 'pop a pill', many times those pills don't work. And when they don't, the ketogenic diet can be your own private miracle. The best way I know of to describe it is as a gift from God. And we will never forget that.

But move on, we did. And we found that first (and only) seizure med that has ever worked for her. Her seizure disorder is very unusual in that she can go up to six months without a one, but once she starts they cluster and she ends up in the hospital for 10 days to two weeks. During which time we can have 40 (a good bout) to 80 (a bad bout) seizures. Accompanied by some lovely regression in her skills. And a week of wild craziness once the seizures are done. Not too pleasant for any of us, let alone her.

But we have a good run with this last drug. Not a sentence I thought I would ever find myself even thinking, let alone saying or typing. So after two years without even a single seizure and two and a half years without a hospitalization, the decision was made to wean the drug. Slowly. Very slowly. Its taken three and a half months but she is now off all seizure meds.

Hence, the end of the line.

Which is a little exciting. And a lot scary. Given her history, we will have to wait quite a while before we can make any pronouncements as to those nasties being done and gone. And truly, with epilepsy, I am not sure that you can ever really say that. So here we sit with our fingers, toes, and eyes crossed. And asking all our friends to pray. While we wait.

But now... For now. It feels kind of good. Like the end of the line might just be a good thing. Maybe.

Knowing ... Not Panicking

Last month was Epilepsy Awareness Month in the United States.
In Canada, it is recognized in March.

But whatever the time of year, it never hurts to remind ourselves ... Do you know what to do if you see someone having a seizure?

The End of the Line

What does it mean to come to the end of the line?
It can be a good or a bad thing, I suppose, depending on the context. But the words themselves tend to evoke a feeling of melancholy, even loneliness, for me.

But not this time. This time it feels more like ... fear. And excitement. With a little giddiness thrown in. But definitely, most strongly, fear.

So what has me so confussed and perpluxed, you ask?
Sorry, for now you will just have to wait. Because, quite simply, I wouldn't want to take a chance on jinxing it.

For now, we will just have to say that it could be close. To the end of the line. Of one small, but far from insignificant, portion of our lives. Most likely not one of the bigger portions, the ones I have really been praying, wishing and hoping for for an awful long time. But its a step. Hopefully in the right direction.

So for now, please just wish us luck. Pray for us. Send us good vibes. Whatever works for you. And we will gratefully accept it. And if when we get there, to the end of that particular line, I will let you know.

Its not very far away. Not very far at all. In fact, I have those moments when I think its way too close. Because really, its only one more week.

And that is the scariest part of all.

Epilepsy Awareness

Apparently November is Epilepsy Awareness Month in the United States. Its March in Canada.

But the fact that, even though I am more familiar with and more likely to remember the American one, I still didn't realize it was this month until today? Probably not such a good sign. Because the whole subject is fairly personal in this house.

But does it really matter so much?
Well, lets see. There are nearly 2.5 million Americans with epilepsy. And more than 300,000 Canadians. Each day, an average of 42 Canadians learns that they have epilepsy and about 60% of new patients are young children and senior citizens.

Did you know that epilepsy is the second most common chronic neurological disorder affecting humankind, after chronic headache? Neither did I. Which you would think I would.

For many with epilepsy, the biggest problem they face, besides seizures, is society's negative attitudes about the condition.

The biggest handicap for persons with epilepsy is social stigma, because misunderstanding and prejudice are prevalent”, explains Dr. Elaine Wirrell, a pediatric neurologist at Alberta Children’s Hospital in Calgary. The conclusions of her recent study shows that adolescents perceive epilepsy as having greater physical and social impact than most other chronic diseases, such as asthma, diabetes, Down’s syndrome, arthritis, migraine, leukemia and HIV infection. 149 teens from 13 to 18 year old, with and without chronic diseases, were interviewed. Epilepsy was perceived to have more adverse physical impact than all chronic llnesses except Down’s syndrome. Epilepsy was also perceived to have more negative social impact particularly on behaviour, honesty, popularity, ability at sports and fun. Overall, epilepsy was perceived to have a similar social impact to HIV infection and leukemia, but a significantly greater social impact than asthma, diabetes, arthritis and migraine.

New cases of epilepsy are most common among children, especially during the first year of life. Another peak of new cases occurs in the elderly. And although treatment for many is a single medication, up to 30% of all epilepsy cases cannot be controlled with AE medications.

So what's available for those individuals?
Surgery, the Vagus Nerve Stimulator (much like a pacemaker for the brain) and the Ketogenic Diet (an extremely high fat, low carb diet which causes the body to switch its metabolism and burn fat for fuel instead of glucose) to name a few. Its much like Russian Roulette really though ... if the first drug fails, the chances of a second working are significantly lessened.

Beyond that? Yeah, Russian Roulette.
Although some treatment options have a better track record than others.

Ever wonder what its like to be a person with epilepsy or a family member? There's lots to read out there, take your pick.

How can you help? Well. there are always the usual ways. And while that's very much appreicated, there are other ways too. Like learning seizure first aid. And helping to raise awareness, which can be done in many different ways.

But maybe, just maybe, one of the most important ways is by showing some compassion and understanding

• the next time you see someone in public having a seizure
  
• the next time a potential employee discloses that they have epilepsy
  
• the next time your child comes home and tells you that there's a new little girl in his class but she acts kind of 'funny' and 'scary'. Educate yourself. And educate your child. Please.

The possibilities are endless. You can find out more at Epilepsy Canada, Epilepsy Matters and at the Epilepsy Foundation of America. Or you can contact the local Epilepsy Association in your area.

Oh yeah, one more thing.

THANKS !!