Category: Seizures

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

Beta Testing Empatica’s Embrace “Seizure Monitoring” Watch

Posted in , , ,

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!

IMG_0961

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.


Tags:

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?’

Posted in , ,

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.


Tags:

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

1 Year Cyborgversary!

Posted in , ,

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!


Tags:

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

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

Posted in , ,

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)

Download BikePortland’s Art & Science of Bike Lights @ iTunes

Download the Podcast at Stitcher 


Tags:

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

Seizures & Epilepsy – Dispelling Myths

Posted in , , ,
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!

Read More


Tags:

Jul 10 2014 July 10, 2014 August 14, 2016 9Comments by bikeleptic

All Lit Up Redux

Posted in , ,

Sometime on Monday, July 7th or Tuesday (you know, the 8th) a very determined and irate dude went out in the wee hours of the morning and spray painted the bike lane  and sharrow between NW 16th – NW 20th and NW Quimby. What he wrote across the bike lane in  both a creamy pink and cheery orange spray paint was a very lewd: “FUCK YOU AND YOUR EPILEPTIC LIGHTS.”

I didn’t do it.

But what did happen is people that were commuting 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.

I originally began writing an article regarding dispelling disability myths, but in the course of my writing, I began to bird walk into bike light data and safety. I have separated the two articles for relevance. You can view the other one here. 

Let’s talk about bike riding, driving and seizures. Specifically dispelling some misinformation regarding ideals that people seem to have regarding seizure disorders. While I was reading the comments on the BikePortland article, there is as much contention regarding blinking bike lights as there is helmets and wearing headphones.

Unfortunately bike lights border into an ADA issue whereas the other two do not. There was a comment on the BP article where a person asked several questions. One of them was: What it actually takes to get a driver’s attention? 

Let’s look at that, shall we?

Read More


Tags:

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

7 Months Later – VNS Device Surgery

Posted in , ,

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.


Tags:

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

EEGeeez I’m Sleep Deprived

Posted in ,

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.


Tags:

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

First Ride of the Year & Seizures

Posted in ,

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.


Tags:

Jan 01 2014 January 1, 2014 January 1, 2014 NoComment by bikeleptic

That Typical End of the Year Letter – On the 1st Day of the Year

Posted in , ,

It’s been a long year, eh?

I have now had the Vagal Nerve Device for 40 days. There have been two adjustments since last we spoke, one being just Monday. I am now at 0.75 milliamps every 5 minutes with the magnet therapy at 25% higher (so, 1.0 mA). My neurologist says that the goal is about 1.5 – 2 mA, so I am about halfway to my therapeutic dosage. Over the next three months or so we will continue titrating upwards as planned. Once I am at my goal amperage, we’ll see how I react to it for a couple of months and then see if we can began tinkering with some of my medication.

As far as how I am currently reacting to it – my coworker at the women’s shelter giggles whenever she notices my voice get a little froggy. Every once in a while I sound like a 5 pack a day smoker for 40 years with big poofed up blue hair sitting at the end of a gloomy bar in my gold halter dress with nine gold rings, bronze tan and saggy breasts. I think my name would be Doris. “Hey Charlie, wanna give me a light?”

So basically, that’s my 2014 epilepsy plan.

I haven’t made any glorious plans as far as cycling goes as of yet. When I make plans, I end up spending a bunch of money on team kit, bike builds, team dues. . . and then end up with some sort of medical issues. Sigh. Not this year, fate! I’m going to just see what comes to me in the spring.

I am focused on my new touring bike build. The fork, front rack and stem just went off to powder coating. (I honestly wouldn’t have gotten all matchy-matchy with the rack and stem but the fork was going in anyway, so. . . why the hell not, right?! That’s what I fucking said too! I’m glad we think the same!) I don’t have the budget to be throwing down for a new build all at once by any means, so this bike is a huge fantastic project for me. I have been working it out on a spreadsheet for months.

The nice part about pacing it out is that I get to really think about what components I want to use and ensure that everything is going to work smoothly together before I commit to the purchase. The horrible part about pacing out the purchasing is I have a chance to change my mind thirty times. I am on Spreadsheet Configuration 4.0 at this point. I have promised that I am, at this point, locking in components “for realsies” because I am actually laying money down now.

What about New Years Resolutions, Halley? Last year you had a NYR!

So yeah. On Monday, December 30th I was laying in bed with my boyfriend – mind you he works normal work hours and is sweet enough to stay up late for me so when his head hits the pillow, he immediately begins to fall asleep. Actually, he’s usually asleep on the couch before we even get up to the bedroom. Anyway, we are in bed, and I whisper: “Brad, what about our New years Eve-Eve tradition?” Groggily, barely awake: “What tradition?” “Well, by the time I get home from work tomorrow it will already be 2014, so this will be the last time we are in bed together in 2013 so we should tell each our hopes, dreams, aspirations for 2014. So we can dream them together into 2014.” He’s quiet for a moment. I think he fell asleep. “That’s our tradition?” “Well, it is now. I’ll remember it next year. (Possible lie.) You’ve got to think of something.” And the amazing thing is that after a little reluctance he actually gave me feedback.

The most difficult thing for me working two jobs is that we really only have one day off together and often only get to see each other for at most an hour in the morning and at night. Generally one or both of us are very exhausted at either time and so conversation isn’t the most connected. So these moments are amazing.

As for resolutions. If I stick to plans or if I don’t, it doesn’t really matter – because you know that I won’t.

Just as long as I ride more bikes.

PS. Not to be too cheesy, but I put this up at my work last night because it was topical and I kind of like it. It’s one of those little book of over-used quotes and probably out of context. Especially due to the fact that the person in question I don’t actually know exactly how they were able to transliterate her script. But whatever. That doesn’t make it any less good.

“Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.” – Helen Keller

 


Tags: