First, let me say that I am not ashamed of my epilepsy, and don't mind telling people - under my own conditions. The reason I am using an alt to post in this thread is that I haven't told all the people at my home DZ yet, and this is not the way I want them to find out. I prefer that people know me before I tell them about my condition, because I am terrified of prejudice - been there, done that, and I can tell you it is very tough to be known as "the guy with epilepsy". People seem to expect you to fall down shaking and kicking any minute, and subconciously act accordingly towards you, which is plain annoying and very frustrating. Yet I feel it would be for the best if I shared my story, so others can avoid making the same mistakes, and won't have to find out everything on their own, as I had to. (As to the "no alts" policy, I asked permission first ) So here goes. I have thought long and hard before even considering making my first jump. That's why this post will be huge, I'll tell you the entire story in one go: I have read a lot of research articles about skydiving and stress, and about epilepsy and a certain neurotransmitter which also happens to mediate stress. As far as I can tell, this neurotransmitter, called NGF, will be upregulated during stressful events such as skydiving, which is a generally accepted model for inducing stress upon healthy volunteers. NGF was also found to be increased after epileptic seizures, but noone has ever addressed the question whether a seizure is stressful to the patient, so that his NGF-levels are upregulated or that upregulation of NGF induces seizures. So, do we have a chicken or an egg in NGF? All articles conclude with sentences along the lines of "it is felt that" "common sense dictates" "patients should" not participate in extreme sports such as skydiving, but all fail to say why. They just dont know what epilepsy is, and what happens to you during and before a seizure. In addition, everyone is different and has their own triggers. I happen to be involved in research myself, and a collegue of mine was looking at physical stressors in healthy volunteers, and measured their responses by looking at a stress hormone (cortizol),as well as telemetric output. I signed up to help her out (this was sometime before I wanted to go skydiving) and I turned out to be very stress-resistant. The physical stress she subjugated us to was to dip our arm for three minutes in ice water. As we were told this before the research started, you could see that most HV had increased stress levels during the ice water test, and then went back to a level lower than the base measurement because they knew the worst was over. My results on the other hand, showed hardly any reaction to the ice water, and then my response went to a level lower than base, as I too knew the worst was over. That being said, I have never, ever had a seizure under stress. In fact, it is much the opposite. Many seizures were when I was nearly asleep, at the point where you have given up trying to stay awake, but are still concious. One seizure was in primary school when listening to a kid mumbling about some subject he had to present, and another was when playing a board game with my uncle. Nor are my seizures triggered by low oxygen levels or cold, as I routinely have to work with samples which are kept under liquid nitrogen. This means I spend hours on end bent over a container sniffing nitrogen. Also, I have no problems skiing in the highest resorts in the Alps. I still take meds, to be specific I swallow 1000 mg of depakin daily, and I am not willing to quit taking them. As I said I have been seizure free for four years now, but that would have been over fifteen had I not grown careless during my nine-month stay in another country. I didn't have a seizure for a long time, but several months while off my meds I was falling asleep in front of the TV, during a movie I really wanted to see. I tried to stay awake as hard as I could, and hey presto! Fortunately this happened in my parents house, and I "woke up" wondering what all the fuss was about. So there is no aura as such, but I feel that if I do not go skydiving when hung over (yes I am allowed alcohol), ill, or exhausted there should be no additional risk. But that goes for everyone. I have been taking my meds ever since that last seizure, and the way I figure I am doing just fine with them, so why take the risk of stopping? If I did, and another seizure came on, my life would have to change radically. As a lab technician, I routinely work not only with liquid nitrogen, but also with all kinds of other hazardous liquids, solids and gases, so I would have to find an entirely different job. And there would be no more wintersports for me, and I could forget about that trip to Africa I was dreaming of. All this information is what I still can remember looking up BEFORE even seeing a doctor, or asking a DZ whethet they were wiling to accept me. Anyway, I judged the risk was one I was willing to take. So I went and emailed a DZ about my condition, and how did they feel about it. The response was heartening: If I'd make it through my medical examination, there was no problem taking me on as a student. So I went to see a sports doctor. He listened to my story with a big grin on his face, I think I made a good impression on him by having looked into the matter on my own. He said that the days when epilepsy patients were expected to sit in a wheelchair wearing a straightjacket and a sack over their heads were over; now, if the doctors were not sure whether something was allowed or not, and could not offer "valid" advice, it was up to the patient themselves to make a risk assesment. And since he saw I had done so, he approved me for skydiving, and I signed up for the very first course. Reasoning that it was safest, and in order to build up height, jumps and skills more graduallly, I went static-line. After all, 3500-5000 ft AGL in my country is no higher than the skiing resorts I go to. It was a risk, sure, but a carefully calculated one, and I felt I'd be no more at risk than any other student. That also goes for causing risk for fellow jumpers. I have heard the argument that "a life of disappointments is better than a thrilling death", but with all due respect to the well meaning individuals who have said so, that is bull. Only one person can evaluate the impact on the quality of life of the epilepsy patient correctly, and that is the patient in question themselves. Anyway, my contact at the DZ obviously wasn't going to remember my name from all the emails and questions he receives, and because I thought that I had already done my duty, it so happened that not a single instructor knew of my special circumstances. I found this out by accident several weeks ago, and a dozen freefalls later. I immediately grounded myself until I had a chance to speak with the chief instructor. When I got hold of him after three weeks of looking upwards being very frustrated wuth all those damned blue skies, he was very supportive. He asked me what I sought to accomplish with our little conversation, as he felt that the circumstances were clear, and in his opinion there weren't any obstacles to my skydiving. I said that I didn't feel happy going up under his responsibility if he didn't know all the facts, and just wanted to put down all my cards on the table. He asked some further questions, and the day after, at the instructor meeting, he said that "an anonymous person" wanted to skydive, and how did the others feel about it. They too felt it shouldn't be a problem, provided that said person got a special declaration from the Dutch variant of the USPA (called the KNVVL). I timidly asked the chief-instructor if I could keep on jumping in the meantime, and he said yes, provided that I got that declaration sorted ASAP. So I called the KNVVL, and there I was met with a lot less understanding. Finally they had me call the president of the medical committee, and she too was very.. detached (i think that's the correct translation). She didn't ask about anything I have said above, she just bluntly stated that mind-influencing meds such as anti-epileptics are not allowed in the air, period. But she'd see what could be done, and advised it would probably take a few days before she'd get back to me. When she failed to do so, I called the KNVvL again, to ask for her email, so I could send her what I have written above so that she too would have all the facts, as well as a subtle reminder that I was waiting for her response. Which I haven't been doing from the ground, by the way. But it turned out that I was referred to the wrong contact, she had nothing to do with skydiving but thought I was looking to drive cessnas or glider aircraft. The person who answered my call apologised profusely, but hey these things happen. I finally got the right phone number, and I called my new contact. He told me to cherish my medical declaration; as I already had one there were no practical problems to my continuing to jump. He advised me to go to the same doctor when my declaration was about to expire, as some other doctors might not be as understanding. He also said that the only trouble he could foresee was that my insurance company was going to refuse to pay in the event of an acident, epilepsy-related or not. He was afraid they would try to say that I had misled the doctor who approved me for skydiving by concealing my epilepsy. Alternatively they could argue that a normal sports doctor is not a neurologist, and therefore not qualified to say that my type of epilepsy is not an obstacle in skydiving. So he told me to get a signed declaration from that doctor in which he confirms that he knew of my epilepsy before he approved me for skydiving, and to take that to a neurologist who was to sign something similar. This way I would be fully covered for "legal repercussions". Because it's very hard to prove that your accident was not because of a seizure, especially from hospital - or worse. Innocent until proven otherwise apparently only applies to criminals. But there are absolutely no practical obstacles to my skydiving career, and once again it is proven that there are much worse things than epilepsy. But other patients who want to jump I would advise to 1) make a careful risk assesment of whether you really really want to jump 2) evaluate your epilepsy, if necessary with your neurologist. What are your triggers, how much medication do you take, with which side effects etc. How long have you been seizure free? 3)tell the person who is going to approve you for skydiving, and show them you know what you're talking about. 4)Get a statement from your neurologist to cover your.. backside. 5) Tell your family you want to skydive - they have a right to know, and this way you'll avoid nasty surprises for them should you get injured in any way, seizure or no. 6) And most importantly, tell your instructors face to face PRIOR to signing up - they'll respect you for it, and you'll avoid damaging the trust they'll have in you should they find out by accident. You'll also avoid losing a lot of sleep and long periods of worry whether you'll be allowed to continue jumping.. Blue skies! disclaimer I only use this alt to post on epilepsy related subjects
