Cycling and Epilepsy

Thanks to Halley Weaver who has shared with us her article appearing on Bike Shop Girl which tells her story on the challenges of cycling with epilepsy.

Halley also shares her story via her blog http://bikeleptic.com/


When you are triaged at the emergency room or picked up by the ambulance after a bicycle crash involving no other vehicle, the intake paramedic or nurse will write “FDGB” on your form. What super official medical term does this acronym mean? “Fall Down Go Boom.” It does get the point across, at the very least.

In 2009, I was going to the emergency room approximately every six to eight weeks for similar reasons. Part of it I was cycling more so naturally I was on my bike versus say in my apartment or walking. It made me a prime candidate for tipping over randomly. A few crashes I just stood up and dusted myself off, but several of them were pretty epic with full facial road rash, splayed out in the middle of road and no memory of how I actually ended up there. That last part was the most unsettling of the entire affair.

That’s when they sent me to a neurologist. It seemed that I had been what are called “absence seizures.” Chances are that I have been experiences them for a long time in my life and have never noticed them. I kind of freak out when I think of this, because I have driven a car a lot in my life and worry that I could have been driving when this had happened. Earlier in life, I would go into random crying fits that had been misdiagnosed as “hypoglycemia.” I very distinctly remember not being able to look at restaurant menus and see the words or formulate thoughts. The neurologist informed me that I was most likely experiencing what was called a “simple partial seizure” and having had them recently, I can attest all the orange juice and glucose tablets in the world won’t help, so while yes they do look like a low blood sugar crash, they are indeed not.

I had my first “grand mal seizure” during a bike ride in downtown Portland and hit a park bench. This was an extremely difficult and stressful time for me. I felt like my brain was trying to kill me. All I wanted to was live a car-free lifestyle, work at the women’s homeless shelter and continue my own business as a professional harpist (with a custom-made bike trailer for my full size folk harp). You know, the typical Portland Oregon lifestyle, right? I couldn’t really live that when I was riddled with migraines, my weight massively fluctuating from trying out new medications – and I already suffered from an overweight awkward childhood so this new struggle was just one more thing to add to my plate.

My neurologist and I struggled to deal with my daily migraines so that I could ride my bike again without the threat of seizure and we couldn’t figure it out until I came across something she didn’t think of. Allergies. I knew I was allergic to a few medications and chemical products, but in addition to them, I added gluten, lactose and egg to my list. Having a very severe latex allergy, I had never realized that banana or avocado were part of the same family, which while I loved and are very beneficial to most diets, unfortunately for me, they cause more harm than good. Cutting them out as well, cleared so many skin issues. It was actually about that time, 2010, I “went vegan.” I had already been eating mostly vegetarian due to the lack of dairy and egg products. My body has never processed red meat well and I don’t eat pork, so it was a pretty natural transition. The most difficult thing for me to break up with was gluten. Total carbitarian.

I want to smack myself in the forehead because it sounds so stupid writing this. You cut out the stuff that you’re allergic to and you stop being sick. I’m not a nutritionist, not giving you nutritional advice and I can only write what worked for me. And, let’s be honest. I still have seizures. It’s not all about food. But I did lose 70 lbs in less than a year, which I am sure was mostly because I was putting crap in my body that couldn’t be processed and broken down.

There are the good days and the bad. I have worked really hard to get to where I am. Charting when I have seizures. I have been on a bunch of different types medications that haven’t worked for me or that I have “grown out of,” meaning that dosage is at such a high mg that any more would be toxic so the doctor either has to supplement a different medication or change medications. There are literally dozens of different kinds of epilepsy that affect the brain. Mine is called progressive myoclonic epilepsy. In short, it means it’s going to get worse in time, but right now it’s really well controlled.

I love cycling and it’s my life. I ride with a primarily road racing team here in Portland, though my passion is cyclocross. I haven’t been able to race the last two years due to health reasons. My knee went out two years ago and I had foot surgery last year. This was related to a back fracture I had six years ago. Ironically related to the dysfunction in my right cerebral hemisphere, which causes discrepancies in motor skills, visuo-spatial, perception and coordination. Basically I FDGB. I am definitely looking forward to this fall and getting muddy.

Paula Apodaca - The Day I Drowned at Tin Can Beach

Hi everyone,

As you all know I have been lucky enough to have the wonderful Paula Apodaca writing for this blog, despite the fact that she has her own blog. Today I would like to share with you one of her wonderful successes. Her words and story has been entered on to the site/journal 'Breath & Shadow - A Journal of Disability Culture and Literature Spring 2010, Volume 7, Number 2. Not only do I commend her for her amazing job, I also want to help others to realise the fine ability she has to demonstrate and reveal the truth of disability, her experiences and the changes it has on ones life. I would like to suggest that you all check it out, it really is quite a marvellous achievement for her and I feel very lucky that we have her as a guest blogger on this site. Check out her story titled 'The Day I Drowned at Tin Can Beach'.

Thanks,

Alyssa

Rethinking the Notion of the "Controlled" Epileptic (BADD 2010 entry...)

Another great post by the lovely Paula Apodaca. I am finding her to be quite amazing, inspirational and intelligent in her words and enjoy her perspective very much. But what are your thoughts?

Paula Apodaca

We hear the term “controlled epileptic” and we think of a person with epilepsy who only needs to take his medicine as he has been told to do to be able to control himself and his seizure activity. Reality for persons with E. is that "compliance" or the taking of one's medication as ordered, often bears no relationship to any specific level of seizure control. In other words, just because I take my meds is no guarantee that I will stop having seizures.


Guilty of both a misunderstanding and a misapplication of the term “controlled”, we are seriously wrong about the epileptic person to whom the term is applied and about the abilities of medical science (e.g. pharmacology) to meet our social expectations.
Most of us make this mistake honestly enough. Our society, like many others around the world, places a premium on moderated behavior. We refer to the act of moderating one's personal behavior as "self control" and identify the strength of character necessary to make such a personal exertion as "willpower". When we think of someone “losing control”, we think of an individual who stubbornly refuses to make use of his willpower to control himself.


We apply this same train of thought to a seizing person with E.. We view his act of seizing as somehow related to his willpower, character or intent and equate it with either disobedience or rebelliousness. Acts of disruptive misbehavior in a public setting, e.g. temper tantrums or seizures, are unacceptable to us and people who put on such displays are “out of control”. Having to witness out of control behavior makes us uncomfortable, distresses us and sometimes angers us.

A few years ago, my husband and I went to visit a friend in the hospital. While sitting in her room, I had a tonic-clonic event, i.e. a convulsion. Nurses were summoned, my husband attended to me, and when he asked them for assistance, they called security. Later, when we were leaving the hospital to go home, the nurse pushing my wheelchair leaned over to me and asked whether "...we had forgotten to take our meds today?".

As insulting as this sounds, it is all too common a response. Persons who should know better by virtue of their professions cannot resist the notion that somehow persons with E. are simply seizing to get attention. The notion of impudent and willful seizing is utterly ridiculous.
Still, there is a desire to believe that the controlled epileptic is a possibility. The idea persists among professionals and non-professionals, as well as among persons with E.. The differance is, persons with E. understand the distinction between the medical application of the term "controlled" and the ordinary use of the word. Too many professionals continue to insist on blaming the patient, rather than admitting that the treatment is insufficient.

The conflict between what is believed to be true and what presents itself as real, looms like a challenge to authority for some people.

But what authority are we speaking of and where did it come from?

In 1951, sociologist Talcott Parsons tried to describe formally what ordinary people already seemed to be acting on at some level. Parsons published his Sick Role Theory, and in it he described two rights and two obligations apparently binding for those who become sick in our society. They are: 1) that the patient is exempt from his normal social duties because he is ill; 2) the sick person is not responsible for his illness; 3) the sick person should try to get well; and finally, 4) the sick person should…cooperate with his physician.

Parsons' theory has been worked and reworked by sociologists to try to take into account the variations not accounted for in the Sick Role Theory. Parsons wrote what many plain folks already upheld: if you are sick, you aren’t to blame and you don’t have to work if you try to get well and obey your doctor, nurse, pharmacist, etc.

Here is the seed of the authority we have been searching for in this piece: an apparent bargain between society tolerating the sick so long as the sick respond by respecting our authority and being obedient.

But, what if they don’t seem to be obeying? What if they seem to be intentionally seizing all over the place?

In 2002, I read a copy of an email exchange between university administrators concerned with how best to handle students with E. who persistently frightened faculty and fellow students by seizing on campus, sometimes during class meetings. Shamefully, the initiator of the exchange was both a Doctor of Pharmacology and of Nursing and should have understood better than anyone the meaning of "control" as related to her students with E..

She queried her colleagues in cyberspace, seeking to know if any of them were experienced with this sort of situation. The replies were varied, but most offered that the best way to handle this sort of disruptive willfulness was to treat it as a problem of student conduct or behavior and not one of disability. They suggested that an "involuntary medical withdrawal" could work constructively in the situation, and in the student’s best interests. The conspirators pointed out that this was a good strategy for skirting the Americans with Disabilities Act, as well.

A few of her respondents mentioned taking such actions at their own universities, regaling one another with their success stories: one student eventually transferred to another university altogether. Problem solved.

What they all seemed to be unaware of was that twelve years earlier, before the email exchange took place, a woman with E., named Barbara Waters, gave testimony before Congress about her own situation at a state college in Massachusetts. She was being harassed and discriminated against by administrators at her college, who wanted to use the tactic of "constructive dismissal" to force her out. She testified she was about to be expelled from school: her college administrators told her that her seizures were "disruptive" and that her presence on campus was "considered a liability" to her school [2 Leg. Hist. (Barbara Waters)].

Thanks to Barbara Waters and others for speaking up. The results have been good for us all because, since 1990, the discriminatory and harassing tactic of “constructive dismissal” is illegal.

The meanings contained within our use of language often include unstated assumptions. Delving into those assumptions requires our participation. To change how people feel about persons with E., we have to be willing to open up and share our knowledge. It is the only way to dispell harmful and simple-minded understandings from either remaining or becoming widely held social expectations.

Introducing Guest Blogger Paula Apodaca

I have taken a shining to the words of this magnificent woman. She has Epilepsy and is open to sharing her experiences, the questions that co-exist with the experience and her many achievements. She writes her own blog 'E. is for Epilepsy by Paula Apodaca' and is able to manipulate the english language to create a signature of understanding and motivation!

Paula Apodaca

In the late 1970's, Peter Conrad and Joseph Schneider were in the field, researching the experience of epilepsy. They concentrated their search for informants on the middle states and were rewarded with an overall participant pool of about 80 persons willing to talk about their lives with epilepsy. Having Epilepsy: The Experience and Control of Illness published in 1983 and the authors were heralded for their work.

When I read the book, some 20 years later, I was surprised by the singular nature of this work: Epilepsy is a disorder much written of and endlessly researched from medical, surgical, and pharmacological points of view, but rarely from a sociological stand point. For me, the book was a real page-turner. Yet, even as much as I liked the work, it seemed to me that it missed something essential: a discussion of key issues unique to the experience of "E." (epilepsy). That's what this blog is for, to talk about some of those key issues that create the essence of one's experience with E..

So, let's talk about them. But first, let's define our terms---after all, we have to agree on the language we will use if we are to understand each other clearly. I have over 50 years experience with E., and it should come in handy. Let me tell you how I realized the way the naming of epilepsy was setting up a barrier to any effective or meaningful dialogue about E.: As a child, it was carefully explained to me by my mother and my first few doctors that I had epilepsy, that I experienced grand mal and petit mal seizures, and that I wold never get over it. In my teens, I learned that I had left temporal lobe epilepsy that expressed itself as both grand mal and petit mal seizures but I was fortunate because my seizure activity came with an aura. As a young woman I was informed that all of this was wrong: what I had was epilepsy, certainly, but it had a left temporal lobe focus, and I suffered grand mal with an aura, petit mal and psychomotor seizure activity.

Today, I have simple and complex partial seizures which secondarily generalize into tonic-clonic episodes, accompanied by psychomotor episodic events. Over the span of my lifetime, my diagnosis has never changed, but the language used to describe it has.

Conrad and Schneider refer to a modernization of terms for epilepsy at the beginning of their book. They point out that some sets of terms are older than others. I feel compelled to point out that just since the publication of their book in 1983, the august body in charge of creating the lexicon used to describe epilepsy has ratified changes at least twice more and is likely to do so again, as soon as this year. As I count it, that makes at least four changes to the language used to name and describe epilepsy in less than 30 years.

Who are these folks? They are the International League Against Epilepsy. To be fair, this active phase of taxonomic refinement is a reflection of the outcomes of research and knowledge growth from within the medical community. But while changes to the language serve and enrich communications between clinicians and researchers, it has a paradoxical effect on those who live with E. because it enhances our sense of isolation from everyone else. After all, how do you begin to talk about your disorder if you can't simply use terms readily accessible to ordinary, non-medicalized folks?

Well, perhaps those kind of conversations can wait. The first set of conversations a person with E. can expect to have will be with one's doctors. You think: This should be easy. After all, E. is an ancient, well-recognized disorder, written about for thousands of years, diagnosed by Hippocrates the Greek and later by Galen the Roman. Not to mention it's New Testament references. So, it is reasonable to expect a clear, easy-going conversation from one's physician. True?
Not true. In fact, most persons experienced with E. have a broader working knowledge of this disorder than do many doctors, regardless whether they are generalists or specialists.

But, here's a tip offered by many of us experienced with E.: if you have an appointment with a doctor and you use words he doesn't seem to understand, or if he uses terms you recognize from before the 1970's, he is probably not the doctor for you. His use of diagnostic terms can tell you how seriously he takes E., how well he will treat you as a patient, and whether or not he has kept abreast of current treatments.