Category: Epilepsy

May 19 2016 May 19, 2016 May 19, 2016 2Comments by bikeleptic

Beta Testing Empatica’s Embrace “Seizure Monitoring” Watch

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embraceboxI was lucky enough to never have to take home economics in high school. I don’t really know what was taught in those classes, but I’ve read enough books and have watched enough television to know that there was a possibility that I would have been saddled with an egg, flour sack or an electronic doll for a week to practice being an unwed teen mother.

And I would have failed horribly.

I began beta-testing Empatica’s Embrace seizure alert watch at the end of February and since then have gotten lots of response, questions and comments from other Empatica funders, those with seizure disorders and otherwise, trying to figure out how I got this sweet gig and how they can get a hold of one of these babies themselves. First of all, let me explain what beta-testing is and why you shouldn’t be jealous of me.

Being a beta tester has been more of a commitment than I realized that it would be, but I have been absolutely committed to my uncompensated position. Why? Because the better they are able to make this product, the closer they can get to get it recognized as a medical device and not just as a wearable technology. As I am writing this, they have just begun the clinical testing to begin the approval process to have this device recognized by neurologists and medical institutions all while the beta-testers like myself are fumbling through the clunky beta software and giving feedback when applicable.

I have adjusted my lifestyle to accommodate being tethered to a Bluetooth-dependent watch, but it hasn’t been a completely terrible experience!

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Being codependent and sending texts without being cognizant of it!

This is basically a “protoype” or kind of like a “dress rehearsal” so to speak. It’s not yet ready to be available on the market, but the company needs live testing with people who have the disorders in which they are trying to assist and monitor so they can improve the software. Because it’s not a finished model, it doesn’t have the battery capacity of a normal wearable and generally needs to be charged twice a day. I was definitely warned about this when I began the testing process, but it has still taken a little adjustment to get used to the charging cycle, and have killed it on numerous occasions.

I was told that because it’s a test model, I am not allowed to change out the thick, gray elastic strap the watch came with, which loosens with wear so I am constantly cinching it back up. If it is too tight, the diodes rub my skin until raw and peeling. Also, the elastic strap is a silvery gray, porous elastic material. IT might as well be white and velcro as it was begging to become filthy from the day I took it out of the box.

Empatica hasn’t pushed the finished app and I don’t even use the “teaser app” that they released on their blog for people that are waiting for their watches to arrive this summer/fall. I am using a special “beta app” which doesn’t allow me to see any of my own biofeedback. There’s a blurb about the “Empatica Mate” on their website, and that’s what I’m most excited about being able to use once I receive the finished model. This allows the wearer to see how their stress levels fluctuate throughout the day depending on their activities “like commuting by car vs. bike, meeting with your boss vs. a friend, and physical activity.” The final version of the watch will allow the wearer to customize a gentle vibration when their stress level is rising, for instance. I don’t get any of that.

What I have is constant vibrations when I get too far from my cellphone. The watch, like, I assume all wearables, is connected to your smart phone by Bluetooth and you need to have internet access for it to work. I don’t generally carry around my phone with me all the time. This has been a learning curve for me. However, I have made a positive discovery:

deskbuzz

So there’s that. My loss of items has been greatly reduced since I have been wearing this watch over the past six weeks. The Bluetooth range on this model is. . . not so great. Not that Bluetooth has more than a 60 – 100 ft radius anyway. I find that the watch can’t see through skin or walls, so if I’m in the next room the quality of signal decreases dramatically or if I have my wrist tucked under my arm or am sleeping on top of my wrist, I can lose signal just from having body on top of the watch.

A lot of things can set the seizure alert off. And I have the patience and good nature to mark down which ones are false alarms and which ones aren’t. I’ve had to stop in the middle of working with my clients in the middle of workshops due to flailing my hands too grandiosely to excuse myself and text Brad quickly, “Not a seizure” due to an alert going off.

On my birthday, we went mountain biking and the watch sent Brad and called him 17 times with alert messages due to the off-road vibration simulating monoclonal seizures. If my breathing is slightly labored, for instance if I am somewhat agitated or have been running for a short period of time, I’ve had false positives reported. I have even had a false-positive sent when I had secretly gone to 7-11 to get a slurpee one hot afternoon during a long break from work while I was standing in the store tapping the air bubbles out of the frozen confection. So, the device is still a work in progress.

I’ve never been a person to have my cellphone on me at all times. Usually when I’m at work my phone stays on my desk or in my bag unless I need to check it.

Because I’m a damn good employee.

Damn it.

However, over the last several weeks, I have been finding that if I leave my office, even to go to the restroom which is right across the hall, I will go “out of range” which is only slightly annoying as if I’m out of range for too long, the watch will go into “Error” status which won’t auto-restart when I come back in range, unlike the “out of range” status. When I’m in “Error” status, I have to manually go onto my phone and turn the app off and on again and get the watch to reset.

Like I said, not a big deal, but just annoying.

The only feature that is usable by me on this beta watch is the actual “watch” feature. It’s very futuristic with a single white light illuminating the hour and a slowly pulsing blue light showing the minute. Even a co-worker, whom is color-blind was able to read it once I explained the hour vs minute feature.

You may be asking, does it work? Despite my jokes and tales of false positives, I was on vacation a couple weeks ago, walking down a sidewalk on a street in a city I was unfamiliar with, hungry, dizzy and disoriented – next thing I knew, I was being held in Brad’s arm as he was holding my VNS magnet to my hand to help me “swipe” myself for the umpteenth time.

My watch called Brad and notified him that I was going into an partial or absence seizure and was no longer keeping up with him during our walk. He was able to immediately turn around and retrieve my magnet from my ankle to assist me and after a few minutes of postical phase, I was able to continue on!

Am I thrilled?

Yeah. A little.


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Dec 14 2014 December 14, 2014 November 9, 2015 NoComment by bikeleptic

Article: Oregonian ‘Uber insurance or blinking bike lights? What’s a bigger safety risk in traffic?’

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I got a phone call about a week ago that I didn’t recognize the number for. I usually don’t answer those numbers, but a lot has been going on in my little universe lately. . . or it could have been an appointment reminder from a doctor.

It was Joseph Rose from the Oregonian! He had gotten my phone number from a friend of mine and wanted to talk to me about blinky lights and how they affect photosensitive epilepsy. First of all, I was excited by the fact that good ol’ fashioned networking works . I tout it all thing during the employment classes I teach at work. But to see it work in real life; awesome sauce!

Second of all; the Oregonian is one of two main newspapers in town. Four if you count the pseudo-alternative ones. (And you should. They really have the best information as it relates to Portland metro.) The others; Portland Tribune, Willamette Weekly and Portland Mercury. Then there are a plethora of other niche magazines that appeal to different areas of town and interest groups, etc. Totaling a couple dozen different ways to get the information you need. But the Oregonian? That’s the long fingers the news. And Mr. Rose is known for his sometimes contentious transportation stories.

I almost wanted to decline talking to him.

But then I figured that there are a lot of idiots in the world (insert people who are naive about other people’s disabilities) and if I could at least plug a little bit of knowledge worm in a couple people’s ears then I had done a good job.

And then I read the comments.

As I’ve stated in previous entries, I really, really hate the acronym “NIMBYISM” and until recently didn’t even know what it meant. If you don’t, it means “Not in my backyard.” This is especially frustrating when someone is saying it in the context of, “I’m gonna continue flashing my strobe lights until drivers stop trying to kill me.” That doesn’t even make sense. There are a myriad of studies that show that while flashing lights may help drivers visually see you better, it is more difficult to predict how far or close you are.

What people don’t think about is that epilepsy is a DISABILITY. It’s not just people whining about flashy lights. One of my favorite analogies to use is; if wheelchair users complained about the lack of curb cuts on sidewalks, would people treat them with the same indifference and downright malice in some cases?

In the comments on this article, and this is not the first time that I have read this, people have actually had the gall to say; “Why don’t they just avert their face?” Why don’t wheelchair users just use the side of the street instead of mounting the sidewalk? Do people not realize that it just takes a couple strobes to trigger a seizure!? Apparently not. Furthermore, some people with photosensitive disorders may not have the capacity to whine about it like I do. Some may BE wheelchair users that do not have a voice to say that they are suffering. For some reason, people are under the assumption that it only effects people with epilepsy and that we’re driving. What? We could be pedestrians, waiting for a bus on the sidewalk, passengers in a car, riding a bus, riding a bike or even sitting inside a building.

What this is very reminiscent of, is my recent experience with the Bike Theft Summit. It’s the fact that people have gotten away from the “community” mentality and more towards the “all for themselves” thought process. People are caring less for each other and how their actions effect another person. They are caring less about personal accountability and pushing it off; “I’m not going to do this until this person does this.” I don’t care what the other person fucking does! You should be doing the right thing because it’s the right thing to do! Period!

Stop making excuses.


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Nov 22 2014 November 22, 2014 November 13, 2015 NoComment by bikeleptic

1 Year Cyborgversary!

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As many of my readers are aware, and many of my friends (if you’re local and read this blog); I find an excuse to celebrate just about anything. This is one of the better reasons. The day I became more than human – when I got my battery pack and brain wires, of course! You can peruse through the entire year’s journey by checking out this subpage.

Just in time for the holidays, I have a new sticker for you! Based on some pretty aggro Portland street graffiti that I did not have any part in, but did write 2 articles based upon. You can view them here and here. There is also a BikePortland article about it here.

Now you can buy a sticker that says what you’re thinking from me!!

fu

I’d write more, but this video pretty much says it all. A lot has changed in the past year. I went from working part-time and having two jobs to having one awesome full-time job. I got a kitten last December. Been having an awesome 2014. Check out the video!

1 Year Video – Complete with Running Commentary!


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Nov 14 2014 November 14, 2014 August 13, 2016 NoComment by bikeleptic

Epilepsy Efs Yo Shit Up!

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I was contacted a while ago by a lovely lady from Healthline who had visited my site and directed me to a new infographic that their site had put up she thought I might be interested in.

I’ll bite.

This is the perfect time of year to be talking about how epilepsy effects the body. Especially since I am coming up on the 1 year anniversary of becoming a cyborg.

While reading the article associated with it (You should actually read it because there’s hoverlinks and a lot more background info) I found myself nodding a lot and saying, “Yup, I definitely do that!.” Which is why I wanted to share it with you folks in down-to-earth language that we all could understand.

Let’s start from the top.

2013-12-23 13.21.00Epilepsy Fucks You Up in the Head
There are different kinds of seizures a person can have, some causing you to lose consciousnesses and some not. You may be left in that postical state, AKA “WTF happened and why am I so exhausted? And why does my wrist hurt?” Rapid eye movement or staring, very awesome during Halloween, but at other times just unsettling can also be a sign of either having a small seizure or the onset of one. Auras or headaches can be a good tell-tale of the onset of a seizure. Unfortunately they also can come at the tail-end so you can get shafted at both ends. I’m an odd-ball as I have synesthesia disorder as well which is a neurological misfire that exacerbates the whole aura shit. It also causes aural, olfactory and gustatory perception scrambles. Some people call this a phenomenon. I call those people assholes.  It’s probably related to my epilepsy. I’m not a doctor. Don’t quote me on that. They also knock you out. Imagine doing 8 hours of college studying in 30 seconds. All that physical exertion and stress on the body is like running a double marathon. Plus, if you’ve added any anticonvulsant meds to the mix, you’ve tripled that shit. You just want to sleep for three days.

Depression is next, but I want to leave that for another article. I have plans for a whole article about how depression sucks and disproportionately effects those with disabilities. It sucks and for those with epilepsy, living with this disorder can be very isolating.

Epilepsy Fucks You Up in the Body
Epilepsy can fuck with your breathing and your heart. It’s really important for everything, but especially for people who are medically vulnerable to get regular check-ups and to be checked out by a doctor if they notice anything amiss. What might be normal to any normie, might not be normal to a Twitch like me. I have a ridiculously low heart rate to begin with so even things like getting what is probably a seasonal cold needs to get checked out. It could be pertussis, could be bronchitis or pneumonia. Epilepsy is considered an autoimmune disorder. And when I have that and Raynaud’s, and various food allergies, am I allowed to say that I have like 4 autoimmune disorders? I’m like uber-vulnerable to the change of the seasons. Loss of muscle tone and uncontrolled bowels. I mentioned this before. Shit happen. Some types of seizures can cause spasming of muscles tightening or relaxing which can cause muscle strain, falling down and cracking your head open or wetting your pants. You can also break your teeth from clenching or grinding, scratch yourself, bit your lip/tongue/cheek, break your arms, legs etc. Every time I go to the dentist it’s generally to get cracks filled from this type of issue.

The scream. Believe it or not, while not howling and bellowing, I mew. Well, it’s more like a “hmm” I guess. It’s what I’ve been told, because I don’t notice that I do it. I’m told that I make questioning humming, clicking noises and bob my head to the side inquisitively, pre-seizurey. Sometimes it never results in a seizure. It’s just a little tick. I also have myoclonic spasms, so there’s that.

And pregnancy. I was all, say what? Concerned that I would burst into spontaneous Immaculate Conception the next time I had a seizure, I needed to read further into their page to see what they meant. I jest, though. This was something I knew about for a long time and something I had researched thoroughly. First of all, I want to say that it is absolutely possible to have a healthy, happy baby just because your have epilepsy or a seizure disorder. Second of all, I’m not a doctor and that’s something that you should talk with your doctor with before actually getting down to the dirty. For a long time in my life, I knew that I was not a great candidate for having the little ones. At least not biologically. If I ever, for whatever reason change my mind – it would be a very conscious one. . . because I would have to go ransom it from gypsies or layaway from Ikea. That’s how you do it, right? 

First, I’m on a lot of really horrific chemicals. Medications that I would have to change or discontinue to be able to grow something inside of me without risk of complications like three-eyes or no asshole. (Sometimes not everybody poops.) That would significantly raise my risk of seizures which would then lower their survival risk. That, my friend is the definition of a Catch-22. (Don’t quote me on that. I just make this shit up.) Then, I also am riddled with cysts. Ovarian ones, uterine ones, that weird lump they took off my foot back in winter of 2012, so it really wasn’t looking that positive for me. I also had a huge golfball lump in my right tit, but that was pre-blog. And, non-cancerous. Also, not mastitis. I got to do a 3 core biopsies, though. Because I’m a masochist. I was a great candidate to just close that shit down.

After a very candid conversation with my ‘Lady Parts Doctor‘ (who also happened to be a woman) we decided that the best course of action would be to proceed with a sorta non-invasive, irreversible, Adiana procedure, which are little silicone pellets about the size of a grain of rice which they shove in each Fallopian tube as well as the Novasure endometrial ablation. The latter was the most important due to the fact I suffered from uncontrollable and painful lady issues. (Which is the nice way of saying I hemorrhaged for seven days straight every twenty-five days, which made me terribly anemic and very sick.) It basically consists of lazering off the uterine lining so nothing can stick to it. Of course there is a risk of an egg sticking to the fallopian tubes, which is why you pair it with the Adiana procedure. Just to make sure the job is done. I knocked this shit out back in December 2011. They had me come back 6 months later to make sure I was closed for business. I apologize if you don’t think that picture is work safe. It is indeed an x-ray of my junk filled with contrast dye. They pumped it in to ensure that it wouldn’t make it past the barriers. NONE SHALL PASS! I got a print-out after I promised I wouldn’t post it on Facebook.

Suckers.


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Oct 19 2014 October 19, 2014 August 13, 2016 NoComment by bikeleptic

Bikes & Lighting in Las Vegas

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This is a very delayed follow-up to my trip to Interbike in Las Vegas, the week of September 9 – 12th. This is somewhat about the event and somewhat about Las Vegas in general. You can read my Day 1 and Day 2 product reviews. 

I had a whole galaxy of multi-colored uppers, downers, screamers, laughers. . . also a bottle of pain relievers, handful of anxiety pills and an epinephrin shot. Not that I needed all that for the trip, but once you get locked into a serious polypharmacology dependency, the tendency is to pack for any scenario.*

The plan was to get from Portland to Las Vegas non-stop. And my adventure began before I even arrived at the airport. Because I have a vagal nerve stimulator and I hadn’t flown with it; I wanted to do my research. I mean, I’m not going to use the word, but. . . I have a titanium battery with wires coming out of it embedded in my chest. I was a little curious about how TSA would react to it.

Upon research, metal detectors are a potential issue to those with VNS devices. There are official websites dedicated to epilepsy advocacy; to VNS information and doctor’s referral that said that it is perfectly safe to go through the metal detector. Then there were others, as well as personal stories that said that metal detectors could possibly turn my device up, down or reset it. If my settings were to change, I could possibly go into status epilepticus right there and then on the terminal floor.

Yeah. No.

So I did what any over-reacting person would do. Instead of just gathering paperwork of support and dealing with it day of; I called the airport. The Port of Portland is great. The lady that I talked to arranged for me to call a customer service rep after I checked in that would escort my boyfriend and I through security. She said that she made a notation on my ticket in the computer. I don’t know what kind of notation. VIP? Trouble maker? Pain in the ass?

I also checked in with my rep from Cyberonics to ensure that my card with my generator and lead ID number were all that I needed. So I’m solid there. My rep ended up sending me a new card with all the info filled out – and instead of just mailing me an envelope with the card, she sent me a new set of magnets with the cards filled out. She informed me that if I ever need new magnets to let her or my neurologists know. Good to know! I’ll stop swiping myself in the hardware store to see if expensive nail bowl magnets are strong enough.

When I called Las Vegas airport, they didn’t care so much. The ADA guy left a voicemail referring me to another number. When I called that it was the emergency line at the airport. I don’t really want to alert them! I’m going to be difficult enough, what with my meds, electronics, magnets, luggage – I would hate to deal with me. . . the emergency line referred me to the customer service info kiosk, who brusquely told me that I just tell the security at the gate that I need to be patted down.

No special treatment in Las Vegas.

Our flight out was insanely early. We got up at about 4am. Had no checked luggage, had checked in the morning before online and so when we arrived at the airport were good to go. I called the phone number I was provided and sure enough a wonderfully polite lady from TSA showed up and escorted us through the security line. I put my items on the conveyor belt and went through the full-body scanner. After a brief conversation with the TSA security, we decided that I would be able to do that as an alternative to the old-fashioned x-ray machine. I don’t care if my junk is on display for the TSA operators. I was going to let them feel me up. I just don’t want my chest to explode. The body scanners are safe to use for people with VNS devices, pace makers, etc. What was super interesting is that the first time in Portland, I forgot to take off my belt which had a metal clasp and that pinged. On the way back in Las Vegas, my medic alert bracelet pinged, which it didn’t even show up on the screen in PDX. My giant titanium (about the size of a watch-face) medical device didn’t show up on either machines. So, I guess if you’re smuggling things into the country, make sure it’s titanium and embedded under your skin.

When we arrived in Las Vegas at 8 in the morning it was already warm. What was cool was that we got to share the shuttle to our hotel with two ladies who started Sweet Spot Skirts. The company started in Vancouver, WA and they’ve been around for a few years. For those of you that have never heard of them, they started their company with short wrap around skirts that cover up cycling or running shorts. For many women it can be a deterrent to exercising because of that awkward material. Personally, I really like wearing skirts over my shorts because it allows me to go straight from riding to restaurant in moments. They have really expanded their business and now sell nationwide; even now offering a man’s more “kilt” style wrap. These are great for after racing when you want to change out of that sweaty kit in public. They unfortunately weren’t showing at Interbike, but they were going to talk about their product and network with other retailers; which was the point of the whole thing. I mean, I’m talking about them now! There’s a couple cycling hats on their site I want. Check them out. They’re pretty swank.

Tuesday was our free day to get settled in to Las Vegas. Our first mission was to see if we could check into our hotel room early. Thankfully, that worked. Which was awesome, because neither of us wanted to carry around bags all day long.

The first observation Brad made was that Las Vegas smells. And it’s true. There’s a very lenient smoking policy there. Basically as long as it’s not in a restaurant, it’s fair game. People were lighting up in the airport, walking around the casinos. It was like living in the 1950s. Worse than that, to cover up the smell of cigarettes, the hotels and casinos would pipe in artificial vanilla or cinnamon; resulting in this very stale, old folk’s home aroma. Not bad, not good – just very recognizable. And recirculated by the industrial A/C that every building was sporting.

 We decided to explore as much as we could this first day and ended up walking from the Mandalay Bay all the way to the Venetian and then back. That equates to about 5 miles. Strangely enough, we were able to do the majority of that inside the casinos. Most of the hotels are connected by shops, sky walks or casinos and discourage people from going outside. Honestly, we just went outside so that we could see something other than slot machines and so that we could get some sun instead of the dim casino lights.

One of the things that we discovered while walking outside was this cool stop sign. You may have one in your town, but we don’t (at least for the most part) in Portland. Both Brad and I thought that they were great attention grabbers. *WARNING* Slow pulsing light. 

So yeah, I was in this crazy city that doesn’t sleep, where there is always noise, and I’m taking little videos of flashing stop signs and checking out the transportation infrastructure. Here’s my thought on this; this town is made a lot for tourists. Many of them choose not to rent cars and so are reliant on other modes of transportation, whether that is walking, taking the tram, the bus, charter bus, taxi or whatever. What this town needs, if there were some bad asses that could cope with the blistering heat, would be some pedicabbers. And to tighten up that main thoroughfare that all the casinos are on. It’s like a 5 lane road that people are constantly crossing, cars are zig-zagging across. I heard or saw accidents on it every day I was there. It’s easy to say, “Not my town, not my problem.” But when it comes to people’s lives; it’s everyone’s problem to improve their quality of life standards.

Walking was exhausting. It was nice and warm in the sun, cold in the casinos. In addition to the lenient smoking laws, they also have an almost non-existent drinking policy. And while I am super careful about my drinking as it is a huge trigger for seizures; viva Las Vegas! Vegas seems to be famous for selling over-priced, under-boozed slushies; and there’s nothing that I love more than snowcones! So, I was toting around a cup of sugar-ice with a splash of booze for half the day.

I felt like such a small town gal, having never rightfully been to Vegas. I mean, I’ve driven through a number of times when I lived in Salt Lake City and we’d go to San Diego and I’ve had layovers there. I even had to pick up something in the suburbs once. This is like going to Disneyland for the first time. Super overwhelming with so much stimuli coming at you all at once.

I have a lot of dietary concerns and I’m vegan. The Vegas strip doesn’t really seem the ideal place to be eating, what with all their fancy Food Network chefs and chain restaurants. However, we ended up at a delicious restaurant called Slice of Vegas, coincidentally at the same time as Brad’s co-worker Mary was there (who is also vegan) where I came across a note at the bottom of the their menu advertising a book on vegan eating in the City of Sin. You can view a few of the restaurants without having to buy the book.

I did have to dip into my stock of enzymes; specifically Enzymaid to assist with gluten. But I mean, come on! Vegan bbq pizza! I only have a little luck with it, but it’s still worth it. (The giant 32oz beer was Brad’s. I’m not that foolhardy!)

But back to the noise. I like background noise. I like playing music in the background or watching TV. However, this is just noise. I don’t know if it’s the A/C or air recirculating, the slot machines, the incredible din of so many people and bodies or what. It was just a constant buzz of sound driving my ears crazy. Even when we went to our room, which was a nice room and I regret that I didn’t get any photos there was still noise. (It was just a standard room, but I’m easily impressed.)

It’s also wicked cold there. This is counter-intuitive since it’s a desert and if you check the weather it’s like 90 degrees and super dry. But the air conditioning systems are cranked up to 11. I feel sorry for people like, well. . . me who require a little extra warmth. If you look through the slideshow, you might notice I’m wearing a long-sleeve sweater in a couple of the shots. My mother told me that places like LV were why the “summer scarf” was invented. I resisted the urge to bring one of my gazillion scarves.

I also gambled for the first time! However, I didn’t spend any of my own money. I did something that is probably something really uncouth. People will leave change on the machines; 15 cents, 8 cents, things like that which you can’t actually use. I walked around and collected it for a few minutes until I had enough to feed into one machine so I could have a turn. How cheap, yes. I did borrow a couple dollars from my friends. It was just for fun and I don’t know how to do any of those card games. I watched some of the tables for a minute or too as well. Way too complicated.

We didn’t make it to any shows because we were so busy with Interbike, however that weekend they were doing a weigh in and big fight for Mayweather vs Maidana at the MGM Grand. We talked to the maintenance crew for a moment and Brad was able to peek in and look at the stadium; something that the security officer said was not allowed. (Not actually walk in and all that like you see in the movies. Just peek in the door.) We then stumbled into a pretty stellar display of all of Mayweather’s old boxing costumes and belts. They were going to be showing up at any moment and have a press conference and all that. We got a photo with the ring girls but ended up leaving as it was a complete madhouse.

Another hidden gem while walking in the Venetian was a place called Nectar. It looks like a bakery with little tarts and donuts in the front windows. It’s actually a soap and natural oil shop! You can even do customizable scents. I got hooked up with an apple spice/pumpkin blend roll-on for fall! Wish there was one of them here. Almost want to ask them about franchising options!!

All in all, it was an interesting trip. No terrible experiences with lighting.Some weird experiences with food ordering, but most of them were from me not reading the menu correctly. Exhausting. Smelly. Loud. I hugged a lot of strangers in costumes, so there’s that.

20140911 - Las Vegas

*Adapted from Fear and Loathing in Las Vegas (the movie version directed by Terry Gilliam; 1998) of the book by Hunter S. Thompon, 1971


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Jul 24 2014 July 24, 2014 August 13, 2016 NoComment by bikeleptic

Article: Guest Speaker on BikePortland Podcast: The Great Blinking Light Debate

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If you’ve been following along with my blog the last week, you may have read my two very lengthy articles; “All Lit Up Redux” and “Seizures & Epilepsy – Dispelling Myths” regarding epilepsy and bike light research. You may also be familiar with the original BikePortland article which spurred my interest to compile this data all into one spot. It was something that I wanted to do for a long time, and at one time I had a file cabinet full of amazing stats, figures and studies on lights, helmets, bike lane and all those kinds of bicycle transportation planning goodies. If this cabinet still exists, it’s about 800 miles away and no longer accessible to me.

Such is life.

After some tweets (seriously, don’t quote me on this, but I’m pretty certain the topic came to fruition through Twitter) an email came through asking if I would be available to be a guest on BikePortland’s July podcast.

Umm yeah.

Even though I felt uber prepared after all the recent research, it’s still nerve-wracking and anxiety-inducing to be recorded for me. So of course it’s something that I want to push myself to do. I do really well in written interviews or highly edited format and have a history of sounding like an idiot on badly edited or unedited footage. (Not going to provide you direct fodder, but there’s some interesting stuff over at my Article archive if you want to peruse that.)

So it happened. I felt that it went pretty well. What I liked about the experience is that it didn’t feel like I was at a job interview or doing a presentation. It was three people that I have been friends with for years and we were all sitting around talking about things that we talk about pretty much every day all the time.

I mean, yes – there was structure to it. And thankfully some of my flubs were edited out.

To all the fans of my vagal nerve stimulator: (I know you’re out there!) If you listen at 17:47, it’s hardly noticeable unless you’re used to hearing it, but there’s a warble to my voice. THAT IS MY VNS DEVICE ACTIVATING! Kind of sounds like I need water or am talking into a fan, doesn’t it? If I hadn’t pointed it out, no one would notice, I’m sure. But this is the kind of blog where it makes sense to mention it.

I did say something in error at about 16:24 in the podcast. I corrected my mistake in the comments, but I want to apologize and correct it again. I said that 10% of people in the United States are afflicted with epilepsy. That would majorly suck and the already long waits to see neurologists (sometimes 6 – 8 weeks even for established patients) would quadruple. What I meant to say was that 10% of people in the United States will experience a seizure sometime during their lives. I apologize for bungling terms when I just wrote an article differentiating them!

Doh!

Then I went on to say 2 – 4% of those with epilepsy have photosensitive epilepsy. That number is actually 3 – 5%! I really botched the most important part of my guest appearance! No one called me out on that point.

Maybe because no one cares to point out when the stats are actually higher and more detrimental to safety. 

Also in the last week while I was writing the other articles and doing the podcast, I have received several personal emails and comments through my Contact Page from other cyclists with epilepsy or that have family members and friends with photosensitive disorders. Thank you for sharing your personal stories with me and I look forward to speaking more with you in the future. Maybe a guest profile feature in the future!?

More tidbits I found but wasn’t able to fit anywhere in other articles, though seems topical here:

  • Epilepsy accounts for 0.5% of the global burden of disease, a time-based measure that combines years of life lost due to premature mortality and time lived in states of less than full health. Epilepsy has significant economic implications in terms of health-care needs, premature death and lost work productivity. (source)
  • At any one point in time, between 2.2 and 3 million people are treated for epilepsy and it’s the 4th most common neurological condition that affects more than 65 million people worldwide. (source)

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Jul 17 2014 July 17, 2014 August 13, 2016 4Comments by bikeleptic

Seizures & Epilepsy – Dispelling Myths

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lights1

NW Quimby & 16th, Twitter tedder42

Last week in the earliest fingers of the falsest of dawns, on what did we decide? Monday, July 7th? There once was a man. This man was equipped with a lovely shade of salmon and mango (you know, to match the dawn, or ironically. . . my website layout) rattle cans and very emphatically wrote a clear statement on a sharrow and in the bike lane between NW 16th – NW 20th and NW Quimby – Raleigh. This declaration, whether in rage at the lack of equal rights afforded to certain individuals with invisible disabilities, outrage at cyclist indifference or senseless hooliganism, we will never know. The words he etched: “FUCK YOU AND YOUR EPILEPTIC LIGHTS.”

People noticed. A few commuters took photos of it and tweeted to Jonathan Maus who subsequently wrote about it on his very popular Portland area bike news and online resource site: BikePortland. You can read the original article here. And as with any internet or news article, there came the comments. . . and the commentators. I generally stay away from such things, but I was called out in the article specifically for my article that I wrote back in January 2013 called “All Lit Up” regarding this very subject. If this paragraph sounds familiar, that’s because it should. You’re not going senile and there’s not a glitch in the Matrix. I stole it almost directly from an article I wrote a few days ago called, “All Lit Up: Redux” which is a twinsie article to this one. Speaking of the Matrix, Hugo Weaving has epilepsy!

What really stood out to me is the misinformation and judgement that people were throwing around in the BikePortland comments – I really, really hate to use this word, but it was a kind of NIMBYism that I was kind of shocked to see. When it comes to people with visible and intellectual disabilities such as wheel chair users, amputees, low-visibility, or perhaps someone on the Autism spectrum; the public will generally attempt to make considerations for their condition to make facilities more accessible. But sitting disabilities and invisible disabilities tend to be open to dismissive and sometimes angry resentment.

So what about those invisible disabilities? Bare with me because this is old, but a ‘1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker (Americans with Disabilities 94-95). In other words, 74% of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assistive equipment.‘ (source)

And that’s just talking about severely disabled. Disability is defined by the ADA as ‘a physical or mental impairment that substantially limits one or more major life activities of such individual.’ (source) According to the ADA, to be considered disabled: ‘impairment that substantially limits one major life activity need not limit other major life activities in order to be considered a disability. . .an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.‘ Thus people who are HIV+, suffering from PTSD, dyslexia or from drug/alcohol addiction can be considered disabled.

But enough about defining disability in general. Let’s talk about epilepsy!

SCIENCE!

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Jun 23 2014 June 23, 2014 June 23, 2014 5Comments by bikeleptic

7 Months Later – VNS Device Surgery

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Well, it’s been a long road (I say, as if I’ve reached the end of it, but really, I’m like 2 blocks into a journey) – as of May 23, 2014 I have had my vagal nerve stimulator implanted for 7 months! That’s right. I became a cyborg on November 23, 2013. You can read about it here. Complete with video!

The reason why I don’t talk about my specific medication is because I am not a doctor or a health care professional. Everyone has specific needs and diagnoses. While I totally encourage research when your doctor talks to you about a new option, your body and individual cocktail is going to react differently than mine. Positive and negative side effects or reactions are based on your own personal chemistry, allergies, diet, exercise, sleep and more. I don’t want you becoming biased (if even unconsciously) due to something that happened to me. I DO recommend that you check out the community forums at Epilepsy.com if you want to ask or read about specific medications and numerous other sites.

Now onto the good stuff.

My most recent tune-up was on the 2nd of June, a couple weeks ago – which reminds me that I need to get some blood work done this week to check my new levels for my antiepileptic meds. At that point we lowered my meds again. We’ve been lowering my main antiepileptics for about 2 months now very slowly. I still have my “emergency pills” in case my VNS device fails or I need additional support. These generally are a quick acting anticonvulsants. However, I have been maxxed out on my main meds for a long time. Like, concerningly maxxed out. To toxic levels. So, in 2 months I have gone down 20% for my nightly dosage and 40% of my morning dosage!  My neurologists have told me that I will probably always have to take meds, but this is substantial!

So what about my VNS device? Again, same as medication, people’s devices are set to what is therapeutic to them. This may be higher or lower than what mine is at. I am going to provide you with my settings only because I have a lot of engineer friends and it’s pretty cool information! If you’re reading this and have a much lower setting or a much higher setting, remember that there are other factors – medication, body size, seizure frequency, tolerance, etc.

Output current: 2.5mA / 20Hz / PW 250 microsec
Impedance value 3050 ohms
Magnet current: 2.75mA

*NOTE: For some reason this video filmed mirrored, which is apparently a common issue with my laptop. I didn’t have a program that would do this simple flipping task. I realized that it probably only annoys me. My sleeve tattoo is on my left arm and the device is implanted on the left side.


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Feb 07 2014 February 7, 2014 February 7, 2014 NoComment by bikeleptic

EEGeeez I’m Sleep Deprived

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I had the pleasure of going in for a “sleep-deprived EEG” on Wednesday. What the hell is that, you’re probably asking. I hope you’re not, because I am sure you realize that I am going to explain that it is, well – an EEG or if you can pronounce this, I will mail you a sticker or something (but probably not) Electroencephalography – and they check out my brainwaves. During this test they may or may not be able to see seizure activity.

The entire appointment lasts about an hour or so from start to finish, but there were some things that I had to do to prepare for it. . .

It is a test after all! I had to study! 

First, I could get no more than 4 hours of sleep. When they told me this, I laughed at the appointment booking person over the phone. On a normal day, I get about 5 to 6 hours of sleep. I aced that and only got about 2 hours of sleep, crawling into bed at 4am to barely stir to the alarm at 6:30am. I wasn’t allowed to have any caffeine the night before including chocolate. I don’t usually drink coffee (though enjoy chai) and am not particularly a fan of chocolate, but I have to tell you, I have never craved chocolate more than when being told I couldn’t have it. I succeeded temptation, though. I also was asked to wash my hair the night before. Score! Front of the class!

Morning of, I bundled up as it was bitterly cold and thankfully got  a ride to the hospital otherwise there was no way I was going to make it to the hospital. I could barely keep my eyes open and ended up at the Sleep Lab.

eegfeb14The funny thing about getting an EEG is that getting the lead wires attached to your scalp probably take longer than the actual test. The technician rubs  the scalp with an abrasive cloth (kind of like sand paper to ensure there’s no oil or gunky build-up on the scalp) and then sticks the wire head to the scalp with a petroleum jelly-like goop. The stuff he used on me had a very light lemony smell which made the experience very pleasant. There are almost 30 wires including some on each collar bones to measure heart rate, jaws and  eyes to measure eye movement. That’s a lot of goop and  wires. He used cotton balls to assist in sticking them so that he could press them in place and they would stick to where they needed to go and not to his finger. (Which is why the ones running along the top of my scalp look fluffy.)

Then it’s the not-so-fun part.

Because you know, that part was a blast a minute to lay there and get shit smeared through my hair.

The test itself is about half an hour. And they start off with the worst part and work towards the easier. First the technician had me do some control line exercises like opening and closing my eyes. Then he dimmed the lights in the room, set the video camera on me and pulled up the strobe light. I had my eyes closed during this part, but I hate it so much.

So much.

The technician will then run the strobe for a few seconds at different frequencies (or Hz) – I apologize but I am not sciencey enough to tell you what is the basal and each increasing increments. The point of this is NOT to cause me to have what is called a “clinical seizure” or a real one. So even though I kept having to be reminded to relax my jaw and I had tears running down the side of my face and it was burning through my eyelids, they were registering how my brain tracked the light.

Then it was over. And I had to hyperventilate for 3 minutes. I have to tell you, I am aces at this. In my head I just pictured a hill climb and mashing my pedals, nice even, fast, sharp breaths. So my nose and cheeks did get tingly and numb and I did start to feel cold, which is completely normal when you’re hyperventilating. But, what was really helpful was that the technician was counting down the time; “Two minutes thirty seconds.” “Two minutes.” Etc. It reminded me of when I used to ride with this guy on a back-to-back tandem which sounds really bizarre, but it was kind of a cool experience; only I could never see what was ahead of me. So when we would be hill climbing, he would call out “A hundred yards to go. . .  50 left.” And It helped me pace out my momentum and power output so I didn’t burn out before I got to the top of the hill. (Tandem captaining & communication skills are essential by the way. It’s true what they say about tandems. However, I’d still ride tandem with the dude – that wasn’t the only issue. We were stellar on the bike in my opinion, but I digress.)

Then there’s just about ten minutes or so of me laying there. Occasionally the technician would ask me to open or close my eyes.

At the end the technician mentioned that I had points of drowsiness, but never fell asleep. No shit. I don’t think I would have been comfortable to nod off when I am flat on my back staring at the ceiling unable to move. He mentioned that my brain tracked the strobes very well.

An interesting thing the technician mentioned was that the director of neurology who would be reading my test, was the 1st neurologist that I had here in Portland! She left the office I go to, to spend more time with her family and since then I am now on my 3rd neurologist. I am thrilled to have her be reading my EEG. Kind of cool to have that going on.

So, I will see what happens next. My new neurologist wanted an updated EEG for his files and to go from there.


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Jan 30 2014 January 30, 2014 January 30, 2014 NoComment by bikeleptic

First Ride of the Year & Seizures

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I rode my bike for the first time on Sunday since mid-October.

Say what?

Yeah. Really.

freakfall

Original Photo ©Dropout Bike Club

Back in October there was this little event called Freak Bike Fall, complete with freak bike alley cross racing. It was a gorgeous warm day and I dragged myself out of the house, hauled my aching bones onto the tall bike and pedaled my body over to hang out with a bunch of crazy bikers from the Dropout Bike Club and friends. I rode a bit over 18 miles that day and assisted in marshaling the cross race. Pedaling as fast as my little high-heeled feet could get me back to my boyfriend’s work before he closed shop as I was having a little too much fun and lost track of time.

Then it got too cold.

And I had surgery.

And it was rainy.

And cold.

Which brings us to Sunday. 45 degree Sunday. Deceptively blue skied and gorgeous Sunday. I was determined to ride my bike, garshdamnit!

I was concerned about how my VNS device was going to respond to my riding, as a diligent over-worrier and researcher the information stated that it can with strenuous exercise breathing could get restricted during the device intervals. Having been a couch potato for the last 4 months, literally eating potato chips, this was a very real threat. So, I dug through the First Aid kit, found the bandage tape and adhered one of my magnets to my device on my chest.

Why tape the magnet to the device? Because holding a magnet to the device for longer than a few seconds will, instead of activating it, will temporarily turn it off. This will not effect the function of the device, nor seizure prevention.

It was cold and my legs ached. And what I did learn is that I traded the every 5 minute inconvenience of the device going off with the continual inconvenience of my face mask hindering my breathing by the very essence of it being, well a face mask.

I got to work alright, and when I took the magnet off, I learned that the cold rawness of your throat that you get while riding combined with the activation of the device brought on by removing the magnet is really not that fun a feeling. So, if/when I turn off the magnet again, I am going to totally wait until my core temp warms up until I remove the magnet.

I met with my brand new epileptologist the next day. He is very thorough and combined with his use of the word, “optimized,” of which he wants to make me – and his desire testing including a newer ‘sleep deprived EEG’ – and if my schedule will allow it in the future, come into the hospital for a week for an epilepsy lab. That includes taking me off all of my meds and just let the seizures happen. I jokingly asked him if they could run me through rigorous stress testing during that time, because I wasn’t that confident coming into a hospital for a week-long vacation was going to cause me to have seizures. I explained to him my definition of the epileptic “Three S’s.” (Not to be confused with the LDS When Not to Wear Your Temple Garment “Three S’s”: Sports, Sex & Swimming.) Mine are the triggers to seizures: stress, substances, or sleep. My new doctor like my simple explanation so much that he said that he was going to steal it.

Patent Pending. Patent Pending. Copyright. Patent Pending. 

He understood what I was saying and said that after I do the EEG he would check out the results and maybe if coming in for a week wouldn’t work that an ambulatory EEG would be a better idea.

Because wearing an awesome hat of wires for a week wouldn’t stick out like a store thumb. At that point, I would rather go to the hospital. 

Anyway, after we tuned up my VNS device to 1.0 mA he mentioned that if I wanted to hang out until after his next appointment he could give me another boost. I would have loved that, but I had to rush off to work.

And then Tuesday happened. I can’t talk much about Tuesday. Or Wednesday really. I know some seizures happened.

Sigh.

I went to work on Tuesday. I remember that. I had a couple meetings that day, and thank goodness I took notes and did a bunch of stuff where I have footnotes of that stuff, because it’s not there in my brain. I don’t really remember work. I don’t remember Wednesday as well. I slept off and on all day, so there’s that. But I know that I did some stuff because there’s little records of me doing that. But I remember waking up on the couch a little after 8pm.

And that brings us to the end of the week and today. So, it’s a progress. And it’s still a learning one.


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