The ADA's of epilepsy

>> Tuesday, October 27, 2015

This ADA world we live in is getting more depressing by the moment. The disparity, the horrific abuses, the apathy...all of this I have seen the last two days not to mention the atrocities of the last 10 years. I know there are wonderful people out there that see my son as a young man that needs patience and understanding and deserves compassion and acceptance. Then there are those that see him as a burden, as someone taking resources that they are paying taxes to maintain and is a waste of their money. I like to think that there are more of the former than the latter but I have been in this epilepsy world for a full decade as of two days ago and before that, the cognitive impairment world, I can tell you...epilepsy is different. It's treated differently. People with epilepsy are treated differently.

And yet:

It's an ADA compliant condition.
There is no greater chance of cognitive impairment than the general population.
Over 3 million people in the US live with active epilepsy and over 100 million know someone with epilepsy.
30 Million people KNOW what a seizure feels like. They have had at least one.

So why:

Does epilepsy research get less funding than contraception? Less than HIV/AIDS? We spend more money on sleep research than on epilepsy. (http://report.nih.gov/categorical_spending.aspx)

The plight of people with epilepsy is largely ignored. Is it because, in most cases, a cause for the seizures is never known? Maybe that's because we spend so little on research? Genetic epilepsies are being found nearly every month this year and the research funding for genetics is impressive. Obviously, if we really look...we will find some answers.

But why does the average, reasonable person, make such horrible comments about epilepsy?  Why is it funny? I can assure you finding Bug laying on the floor, blue, in full convulsion, is not funny. Yet some people will stand by and watch without trying to help. Some people will steal money from him, take his wallet (if he had one). Police will arrest him for being disorderly while coming around from a seizure and if he were a woman...he runs the risk of sexual assault. All of these things have happened just this year around the world. For those of you calling BS:

Liverpool News - Epileptic man 'robbed' during seizure in Kensington

Epileptic man arrested for DWI sues Dallas PD

Woman was sexually assaulted and had her iPod stolen as she suffered epileptic fit in public park

And then, there is this:

Former teacher pleads guilty in assault of autistic boy

The last one is very upsetting to me personally and I will, most likely, detail my thoughts on that particular type of depravity later. Professionally, I am disgusted by all of these negative stories I hear. And I hear a lot of them. We pretend to be so enlightened.  We are concerned about animals and the environment because we know more and are more civilized than generations before us. But those generations before us, while misinformed, thought that people in seizure were touched by God. Some thought of them as being 'enlightened' during a seizure, in a sense, some societies revered people with epilepsy. Others thought people with the 'falling sickness' were possessed of demons.

Candidly, I like the idea of a supernatural etiology a lot better than the reality. The reality is most people never know the cause of their seizures, and those with a comorbid condition rarely recognize, nor does the CDC record, their seizures as epileptic. So let's say it together: I have epilepsy. I have had more than one seizure. It's Ok. I promise, with all my sad stories, it will be OK. These negative stories, they have to be told. They have to be told so they don't happen again. WE have to make sure they don't happen again.

The definition of epilepsy changes over time but the community of people living with it don't. They are from every walk of life, every socioeconomic group and nationality.  There is no one group of people more predisposed to having epilepsy than another, nor a gender more prone. The fact is: we ALL have a seizure threshold, any one of can have a seizure at any given time, if the conditions are right. Some of us have a lower threshold and seize more often and for a variety of reasons.

The fact remains: if you have a seizure you may never have another or you may seize for the rest of your life but you will ALWAYS find people to support you. And you will always find people that will exploit or abuse you in their ignorance. You will have medical professionals that have no idea how to respond to you having a seizure. Not just because they have never seen one, but because they are not taught in depth about seizures and epilepsy. You read that right: there is NO chapter on epilepsy, and the many types of seizures, in any medical course not expressly dedicated to the treating of the condition. It is overlooked as being a specialist-only condition.

This confounds my common sense. As it should for anyone. If you have a 1 in 10 chance of having a seizure in your lifetime and a 1 in 26 chance of being diagnosed with epilepsy, why do we not teach about it everywhere? Why do we not spend as much time on it as we do diabetes in our health classes? I ask these questions because I believe in education. I believe that if you take the time to teach someone about a condition, it becomes more accepted. Crazy idea isn't it? The more you know, the more you accept what you know. And, also, what you don't know. You become...enlightened.

In Utah, the Epilepsy Association of Utah has a complimentary Get Seizure Smart! Class. Complimentary! There is no excuse for ignorance, and only a fool would remain ignorant. We have presented this 15-60 minute class (based on requirements and requests) to thousands of people and hopefully enlightened a few of those about epilepsy to help make acceptance happen. While I am thinking about it, you can now view it online: Seizure Smart.

Seizures are scary, but the Bugster is not scary. We accept seizures as normal for our family, even as much as we hate them, Bug is in our family and we accept and love him and all his smiles and seizures. Lately, there are more smiles than seizures and for that I am eternally grateful. It is that reason, his smiles, that I fight for all people with epilepsy. His smiles, that were gone for so long. His smiles, that medical professionals forgot he had and now, will never forget.


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Unspoken

>> Friday, October 23, 2015

Lunch, for Bug, is really just a continuation of breakfast and a gateway to a snack before dinner. He eats a lot. Today, he paused.

We were having nachos with chili...he's loved it since he was little; dip the cheesy chip into the chili and it's like a little edible scoop of goodness.

When he paused, I didn't think much of it so I went to get the next set of nachos. When I returned, he was in tears.

This does NOT happen often and I was taken aback. I grabbed his hand and he looked at me, still crying, not making a sound. I begged for him to tell me what it was that was making him cry, to motion to what it was...something to enable me to help him. There was nothing. He made no motions, no little nuance to hint at the problem. But he did not seize. He did NOT seize so I knew it couldn't have been too serious. Yet, I thought I was going to see him go into a seizure at any second.

At that moment, it takes a lot of deep breathing to hold it together and to be patient and wait it out. Everything about being his Mom says: Help him! But I did not SEE anything, I did not PERCEIVE anything. I had to wait. So I waited.

Slowly, his tears stopped, he got a drink and we continued eating. I can surmise that he bit into a chip and it poked him. That is pretty darn painful, but I will never know. Never.

That little incident led to another bigger one: I will be changing diapers for the rest of my life.

Ava really needs to potty train.

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Again with the weed talk...

>> Wednesday, October 21, 2015

Bug...is doing well. 5 seizures last night, but 2 the night before and 1 the night before that. The roller coaster is in full swing, but really, so much better than the 10 he was having. And the Diastat he needed weekly, sometimes daily...haven't used it since we left Utah. I will take this improvement and I am very pleased with it. I do NOT second guess my work with Charlee's Law. I DO NOT. Some people believe that they need more THC and that is up to them, I hope it helps if they are taking that chance. It doesn't help Bug and luckily we were still within federal law when he tried it, but it was NOT a coincidence that it was bad for him. Because the CBD has been so good for him. And to me, in my limited understanding, it would make sense. Bug needs to speed up his brain, not slow it down. He has slow alpha waves so slowing his brain: not a good thing. At least not in that very fundamental way. For him, the higher CBD strain he is taking is great. He smiles at me, he comes when I call him, he is making noises that are very speech-like. It's pretty darn great. And with his history of all hell breaking loose for no apparent reason...we are NOT changing anything at the moment. NOT ONE THING. He is stable. Let's leave it there for a while, shall we? So when people try the higher CBD strains and use it like it is any other medication, it makes me crazy. There is a sweet spot with cannabinoids. Yes, our bodies have a system that recognize it and use it VERY efficiently. But when that system is overloaded, it's not a good thing. So the titration has to be slow and steady. One must be patient to not overshoot that optimum area of feeding the system what it needs without overloading it. Too much is bad. Get it? It is NOT your normal AED, folks. Yet, when they miss that sweet spot, they say: it worked and then...and then...
THEY usually finish with: It stopped working. We need more THC. Sigh. 

Maybe, but maybe not. THC is a proven pro-convulsant. Don't just use the studies that support your position, use all of them. THC is a pro-convulsant. You have to be careful if you have a low seizure threshold. Depending on your type of epilepsy, THC can make it worse. As of this moment, we can not say the same about CBD. So, no, you, most likely, thought more was better and overshot the target. More, is just more in this case. It is NOT more effective. It did not stop working. The patient was overdosed with CBD. What they should do is stay at one dose for 2 to 4 weeks before upping to the next dose. Yes, that slowly. We saw that with the Bugster. And many people have. Even with the higher THC strains: titrate SLOWLY. For pain...different ball game. Entirely different. Same with Cancer. But whatever the condition, I believe cannabis deserves its day in court. It deserves to be tested, and used as a treatment if tests bear out a positive result. Quantifying the term 'positive' should be left to the patient and their medical practitioner. It DESERVES to be used as a tool for improving quality of life. You SHOULD NOT tell me: But it's addictive. So is Hydrocodone, and Morphine and we use those. The addiction argument is really and truly invalid when discussing cannabis AS A TREATMENT. Do not breathe recreational use on my argument. We are talking medicine not your right to get high. Different argument entirely. There is a committee meeting today. They are discussing medical marijuana. I smile, because I WILL NOT tune in to listen. I can't. I won't. I am raw. I am done being beat up and ignored for this one thing. This wonderful and marvelous thing but there is more to me and more to my little man than cannabis. I am looking at my little man, my little cannabis user, and I delete my Facebook post that I was composing. Not before I copied it though. I need to have it in the ether. Somewhere in cyberspace, I just need it. I am so sick of it that I can't get into that on Facebook right now. I can not feel like I didn't do enough, that we didn't make a difference, that we had NOTHING to offer the people of Utah after all of the work and abuse we took. So I share it here for all 14 of you: "Let us be very clear so that everyone can understand the uphill journey this is, and if you believe that marijuana has a medical purpose, you better be very ready to defend that position and take a part in moving legislation forward: The Epilepsy Association of UT worked diligently to get a bill that would help its constituents. When we asked other groups to be involved, they politely declined. We were on our own. We had proof that high-CBD strains of cannabis are very effective for seizure control. AS effective as other medications and all with fewer side effects. We went into the legislative session asking for ALL neurological conditions to be included since we also had proof of its effectiveness for MS, Parkinsons, dementia among others, we HAD to concede that point, we had to agree to intractable epilepsy cases. AND it has been helpful for MOST of those cases. Regardless of the advertisement, almost 90% of our families that have reported are seeing an improvement. The bill includes safety for small amounts of THC with higher amounts of CBD. It is NOT a CBD-ONLY bill. It was the FIRST bill in the nation and helped other states get legislation passed and yet, Utah gets nary a mention when discussing the push for legalization. It's as if...we did nothing. As much as people criticize and complain...you were NOT there talking to legislators, you were NOT there showing people your child seizing and you were NOT there crying when you had to agree to take out the help for your father who has dementia and your mother who was dying of cancer. We were. 10 hours a day, sometimes more for months. We sacrificed and where called names, told we were selfish and killing people by not fighting more. 10 hours a day! With 2 hours of drive time not to mentions meetings to numerous to count. And we didn't fight more? It's not a fight If you know that cannabis can help you, then YOU better be prepared to see it through, to call your legislator, to be polite, to put your ego aside and ask for a bill that will help you while providing as much security as possible without a price tag that is prohibitive and an infrastructure that would take almost a decade to set up. It's in YOUR hands now, what will you do with it?"

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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