Can’t see it? Just do it. Stuff for the blind and everyone else.
Can’t see it? Just do it. Stuff for the blind and everyone else.
On November 10, John and I found ourselves in the Hilton in Beverly Hills, California, at the second annual NMO Patient Day sponsored by the Guthy-Jackson Foundation. Similar to the symposium I went to in Dallas back in September, the NMO Patient Day was a gathering of patients, their caregivers, clinicians, and physicians; I reconnected with some of the people I had previously met just a few months before in Texas. The Patient Day, while similar to the symposium in that a part of its purpose was to dispense information addressing issues NMO patients are concerned with (e.g. latest effective treatments, future of research, available resources), the main difference was that the NMO Patient Day was just that: a day with only NMO patients whereas Dallas included TM and ADEM. Another difference, related to the fact that the symposium was threedays versus the Patient Day being only one, was that the Patient Day felt much less dense; there were scientific talks but my brain didn’t hurt by day’s end. That’s because the event really was geared toward patients and not a medically-minded audience of doctors and research scientists. After opening remarks by Victoria Jackson who founded the foundation with her husband, Bill Guthy, after their daughter was diagnosed with NMO, the program went straight into explaining what the foundation has been doing in the past year or so. A clinical consortium had been set up between three NMO centers to work toward advancing medical research and thus, patient care: the Scottsdale Mayo Clinic with Dr. Dean Wingerchuck, the UT Southwestern‘s NMO Center in Dallas headed by Dr. Benjamin Greenberg, and the Johns Hopkins Neuroimmunology department in Baltimore with Dr. Michael Levy. The purpose of the consortium is to collaborate in research in order to advance the sciences and studies of NMO. Because of these efforts, largely due to the support from the Foundation, we are now closer to figuring out a cause for NMO than for MS despite the massive funding and years MS has over NMO. (This, at least, was what we were told; as far as how this is so, I have yet to understand the reasoning.)
The IgG biomarker, in fact, which was discovered by the Mayo Clinic a few years ago to test for NMO, was the first antibody ever found in an anti-inflammatory disease. The IgG existence indicates that NMO is indeed its own disease and not a form of MS. (Now if only my friends can remember this and quit thinking I have MS.) But this medical advancement helps NMO shed its orphan status, be recognized as a unique disease, and thus attract more research.
There was also a huge push to join the NMO repository of the Accelerated Cure Project (more about this in a future post), which I’ve already done in my previous Dallas trip. This time in L.A., John even joined as a control subject. This was followed by a Q&A session between the NMO audience and a panel of physicians. Some interesting things I heard:
The Q&A was followed by a stem cell therapy presentation by Dr. Richard Burt of Northwestern which I’d already seen in Dallas. Then Dr. Daniel Siegel a psychiatrist from UCLA, switched gears up a bit and talked about mindful awareness/meditation and the importance of it for everyone, especially those with NMO as our disease alone is such a huge source of stress. He took the entire audience into a mindfully aware state, instructing us to concentrate on our breath and our selves. He said that during meditation or mindful awareness, our brain is completely active–this is not relaxation, where the brain is inactive. I have been told for years by numerous people that meditation would be good for me. My friend Karen bought me Wherever You Go, There You Are five years ago. I never finished the book. My aunt tried to teach me tai chi; I grew impatient and gave up. I downloaded meditation podcasts but never listen to them. A therapist I’d seen showed me meditation techniques, but I’d given up on that too. It’s like my brain knows it’s good for me, but something hasn’t clicked into place for me to actually actively pursue it. I did tell John while at the Patient Day, though, that I was thinking of doing at least two minutes of meditation and breathing exercises every day for 30 days to see if it would be beneficial and, of course, blogging about my experience here. Now if only I can get to the point of actually starting the trial experiment.
The 2010 NMO Patient Day was a great event. Not only did the Foundation offer financial support in the form of travel grants, it offered moral support, saying that now, NMO patients have a home. We are no longer an orphan disease, patients lost and confused, knowing nowhere to turn. Now there is a growing community and plethora of information and resources people with NMO and their caregivers can turn to when they need it. With NMO patients being the go-getter types, it was only a matter of time when we’d all band together and form an alliance and support network. It just took the vision and means of Bill Guthy and Victoria Jackson to make it all happen. So thank you to Bill, Victoria, Dan, and the entire staff behind GJCF, for such a successful 2010 NMO Patient Day.
On November 7, we strapped our KHS on the car and drove out to the Sun & Ski in Katy to ride the Tour de Donut. We rode the 28 mile route and joined the timed race even though we told ourselves we’d take it easy especially since it was going to be my longest distance cycling ever. i guess we figured it wouldn’t hurt to try for the ski trip for two should some miracle happen that day and our bike either grew wings or our stomachs expanded to fit one million donuts.
The weather was extremely chilly for me that morning–maybe upper 40s? Luckily, I had just made a trip to Performance Bike to buy biking pants (which still left my calves naked) and a skull cap to wear underneath the helmet. I wore a windbreaker jacket and winter gloves underneath my biking gloves, too, and I was still cold. Once we started biking and the wind hit my face, I grew to understand why John was considering buying the full face mask. You may look like a scary robber but it’s totally worth it; that wind is vicious, and I was even cold from the stoker position. Poor John; he had to bear the brunt of the wind being on the front of the bike.
By the time we made it to the first rest stop, however, it was getting warmer. The donuts were cold but putting something in my stomach still helped to warm my body up. There were two rest stops for the 28-mile ride, and between the two of us, we ate seven donuts. We biked it in 2:33 including the two stops we made to eat and pee and the one stop we made so John could help a guy change his flat. According to our trustworthy Cyclemeter, we were in motion for two hours, which means we averaged 14-15 mph. Not bad. The app also told us we did hit over 20 mph a few times, but that wind was killer.
It was nice once the sun came out but I wish John would’ve put the speakers on the bike. It’s nice to view the suburban landscape while biking, but if you’re the Blind Cook, what can you do besides listen to cars passing you up?
In the end, after taking into account our time and donuts eaten (which shaved off five minutes each), we finished just about in the middle. I guess that makes us average bikers on the tandem. But it was a fun time I got to spend with my hubby getting some exercise and doing it all for a good cause. Thanks to Shipley’s and Sun & Ski for sponsoring the Tour. Till next year…
This question has posed a puzzle for doctors and scientists for years. Who is likely to be diagnosed with NMO? What triggers NMO? What are the underlying causes of NMO? How can NMO be prevented, treated, cured? Like other autoimmune diseases, nobody has the answers. From what I’ve learned through the course of my condition by personal research and the 2010 Rare Neuroimmunologic Disorders symposium, a person with NMO has to: (1) possess the genetic susceptibility for the disease, and (2) be exposed to the environmental factor that triggers the disease. Both must happen in order for NMO to develop; they are not mutually exclusive.
On that note, I recently attended the NMO Patient Day in L.A. sponsored by the Guthy-Jackson Foundation (to be outlined in a future post) where I befriended E and J, two young women who, like me, are ambitious and proactive types. All three of us are “newly” married without children–E for three years, J for three months, and me for six months. All three of us are thinking about possibly having children, forging forward in our vocations while being good wives to our husbands. Over dinner while the men talked man talk, E, J, and I discussed how it seems most of the people with NMO share similar qualities: determined, intelligent, strong-minded and strong-willed personalities. Nobody we met was just sitting around on their couch watching “Jersey Shore” marathons. Everyone was doing something in addition to dealing with their NMO. And almost all of them were women.
What did this all mean? E, J, and I had no idea, but I pointed out that it seems autoimmune diseases often inflict people with high stress levels. This is no surprise since most of our attacks and symptoms arise almost immediately after or even during stressful life situations. (This was, in fact, noted by the doctors.)
I thought back to all the people with NMO I’ve gotten to know over the years either online, on the phone, or in person. All of them, with the exception of two (one whom I never had contact with but I’ve kept in touch with his mother), all have been female. Additionally, all are driven, and compassionate individuals. Everyone has been open in sharing their stories and struggles; perhaps this is due to the fact that NMO is very rare and so we have to be candid with our lives in order to make connections which are rare in itself since our network is so small. E pointed out that most people she’s met with MS are much more private about their condition, and I reasoned that because MS is more widespread and the research more advanced, MS patients can keep quiet and still receive adequate treatment. NMO, on the other hand, is an orphan disease, and so with the little research and resources available to NMO patients, we feel we need to speak up, speak out, and speak loudly about our disease in order to move and shake the medical world. “Hello! We need help too!” But when I think about S and B whom I’ve been in contact with for several years now ever since my diagnosis in 2003, I find that they, too, are like E, J, and me. Of course, the future of NMO medicine cannot simply be hinged upon similar traits without hard evidence, but I can’t help but wonder why the majority of us with NMO are this particular type of woman. Any thoughts?
When we were on the Barcelona leg of our honeymoon earlier this year, John noticed there were kiosks around the city where people were seen swiping a card into a machine and then pulling a bicycle from the pile and taking off down the road with it. After a few times, John realized it was a sort of a bike share program where you could, upon running a credit card, rent a city-owned bike to get around town and then simply return it later at whichever kiosk you end up at. Even better, it’s free if you get it back to a kiosk in less than 30 minutes.
We thought this was such a neat idea: by providing an inexpensive, efficient mode of transportation for its citizens, it promotes less emissions and cleaner air. When, if ever, will Houston get on the earth-friendly bandwagon?
Well, it looks like we who are notorious for our gassy SUVs and monster trucks will not have to wait much longer. According to Laura Spanjian, Houston’s Sustainability Director, the city will launch the beginnings of a bike share program in early 2011. Houston was one of 25 communities to receive a $423,000 grant from the EPA to reduce its greenhouse gas emissions from transportation, beating out 400 other competitors. (Way to go, Houston, considering you choke in almost every other competition–read: sports.) Houston also plans to use part of the grant on improving its electric car infrastructure, aiming to increase the number of charging stations from 15 to 65. With such plans in place, Spanjian hopes to meet the new EPA ozone guidelines.
I know this post doesn’t necessarily pertain to my themes of eating, cooking, and seeing vs. not seeing, but since I’ve been blogging a lot about cycling lately, I thought it was worth sharing. It’d be awesome if they added some tandems on the kiosks but somehow, I don’t picture that happening.
I was asked by a friendly reader after blogging my first experience with an supported bike ride how it felt to ride on the back–the technical term being “stoker”–of the tandem bicycle. It was then that I realized I never talked about the short, short history of our tandem cycling on this blog: why we decided to get one, where we went to get it, how we picked “the one.” So here it is: a breif, brief history of our life as tandem cyclists.
It all started when John decided to bike the MS150, a two-day, 180-mile supported ride from Houston to Austin held every April in support of raising money for MS research and the National MS Society. His first year doing the ride was only one-and-a-half years ago in 2009. By chance, the Houston Chronicle learned of his story–how his girlfriend at the time (that’s me) had an autoimmune condition similar to MS and how that inspired him to ride the ride–and decided to run an article about us. (The printed version, which we plan to frame one day along with the bandana I decorated for him, is sitting in a plastic sleeve on our shelf.)
So with John getting into biking and having done the MS150 for two years (2009-2010), I thought it would be cool if I could join him, not necessarily to do a full-out MS150, but to get regular exercise and do a few locally supported charity rides. The only other time I rode a tandem was in Vancouver with Joanna, and once we got the communication down, it was fun and easy. But with John, I was afraid that his experience combined with my novitiate would make for constant bickering to the point where the poor bicycle would be casted aside to the dusty corner of our garage. Regardless, we took the risk and decided a tandem bike would be our wedding gift to ourselves. So a few weeks after the dust had settled from our wedding, John and I drove up to House of Tandems in Spring, test rode a KHS, fell in love with it, and dished out the [insert amount equivalent to five thousand packages of ramen] for one we could call our very own. It was custom-built with a matte-finished champagne colored frame, Ultegra 105 components, and a Cateye computer to record our speed, RPMs, etc.
For some time, our bike remained in the garage. It was just too damn hot in Houston to ride. At one point, we even had a flat on it because it sat idle for so long. But now that the weather is cooling, biking is more bearable, so we’ve ventured to take the KHS out more.
Riding a tandem as a stoker (back) versus a captain (front) takes both more and less energy, depending on how you look at it. The captain has to steer, which requires more concentration, but the stoker is supposed to be the stronger “pedaler.” But obviously in our situation, I have to be the weak-pedaling stoker. Pedaling on a tandem isn’t difficult though–I manage to move us forward at a decent pace even when John picks up his feet and I have to pedal for the both of us. In fact, it’s kind of nice because when I get lazy, I just rest my helmet on his back and close my eyes while my legs simply go through the cycling motion.
Tandem cycling, like any other team sport, requires communication. John has to call out such warnings as “Going!”, “Slowing!”, and “Stopping!” This way I can clip in and clip out with my shoes, something I still have trouble with in spite of my egg beater pedals. My main complaint, however, would have to be the uncomfortable stock seat. Even though I wore my padded shorts, my crotch was tender (bruised?) for three days after the Midnight Ramble. After urinating, I couldn’t even properly wipe myself–I had to gently dab all the while gritting my teeth. Needless to say, John and I are planning to replace the seats in time for the Tour de Donut (which we are riding the day this post is scheduled to publish). Hook up John’s iPod speakers to the thing, and we’re ready to go.
Biking in itself is fun. I get aerobic exercise; build lean muscle in my back, arms, and legs; and enjoy the sounds and smells of what I’m sure is scenic Houston. Yes, it would be nice if I could enjoy the sights, too, but being able to feel the breeze on my face is enough to get me out there cycling.
Note: This is categorized under “Technological advances” but it is more like a lack thereof.
I just spent the past 90 minutes trying to RSVP to an event on Evite. One single event. One single RSVP. Needless to say, I’m pretty pissed right now. Why does Evite suck so bad? I’ll tell you why. Their site is utterly counterintuitive for people who have to use screen reading software to navigate. Before the “new” Evite rolled out, I didn’t have too many problems RSVP-ing, but creating an Evite was loathsome–it would take me maybe an hour or so to figure out which field the cursor was in. Now with this new Evite, even RSVP-ing sucks! I’m sure for sighted people, the format or layout is cleaner, but hello?! What if you are using JAWS or a screen reader to find your way around the web? Now the event itself is hard to find, and once you click on the event in the list, the details are difficult to locate. And then every time I click on a radio button to RSVP “yes,” “no,” or “maybe,” my screen reader isn’t letting me tab to the comments box and then the “reply” button. This means there is something not working with Evite and my screen reader, and I’m going to blame Evite since JAWS seems to give me no problems elsewhere. I had to retype my RSVP a dozen times before it finally saved correctly.
And why are there so many links on the Evite? In JAWS, the tab button is used to scroll from link to link, and with everything being labeled as a link, it takes me too long to find the field or button or link I’m looking for.
Still convinced that Evite doesn’t suck? There is an entire site dedicated to Evite’s suckiness. If you google “evite sucks,” you get a ton of search results. Evite, you suck. You’d better redeem yourself in your next version. Get a group of blind people to do some QA testing on your site. I hope somehow this post finds the Evite CEO’s eyes!
“As architects, we’re visual animals. The interesting riddle…is if you take sight out of the equation, what makes for good architecture?” –Chris Downey
A few weeks after Chris Downey started work at an architectural firm in San Francisco, he noticed something wrong with his vision. It turned out he had a tumor wrapped around his optic nerve. After surgery, he eventually lost all of his vision not to mention his job.
Today, he is a key architectural consultant for a rehabilitation center for a VA hospital in Palo Alto. Funny how the door closing on your vision can often open new doors elsewhere. Downey must’ve felt like he hit rock bottom when after having to deal with a tumor and subsequent vision loss, he also had to deal with unemployment. In a city full of unemployed architects, he was sure he was the only blind one. Where does one go from here?
Downey’s story is just one example of how, despite vision loss, one can become empowered to do even bigger, greater, and more compassionate things. To read his story in The Atlantic, click here.
Okay, so what I thought would’ve been my first organized bike ride on our tandem bicycle actually turned out to be the Moonlight Ramble, a ride benefitting Bike Houston, an organization that advocates for Houston to move toward becoming a bike friendly city. One of their most recent endeavors was getting the city to place bike racks on Metro buses so that bikers could transport their bikes using public transportation. Yes, this is something that almost every large U.S. city has been doing for years, but Houston, with their SUV and pick-up truck culture, has yet to yield to cyclists.
John and I were sitting at home last night doing what couples do when there’s nothing else to do on a Saturday night–we were watching The Silence of the Lambs (a movie that my husband had never seen until yesterday)–when John saw on Twitter that there was an organized bike ride to be held at 2 AM. And with nothing better to do, we decided to ride, convincing our friend Daniel to join us. So three hours later, we were at the George R. Brown Convention Center with our gloves on and helmets strapped under our chins. There were two paths: the short route (10 miles) and the long route (20 miles). Of course, we planned to do only the short route as it being two in the morning, we weren’t too keen on getting to bed at dawn.
They started us off in waves promptly at two. At first, there was a lot of stop-and-go traffic since we were obeying traffic lights. But soon, impatience got the better of everyone, and we were riding through red lights so long as there was no oncoming traffic. We rode through downtown and saw all the clubgoers stumbling out of the bars, honking at us for getting in their way and permitting them to only go ten miles per hour down downtown streets. We rode through the Medical Center, the Museum District, the Galleria.
“Where’s the split off for the short route?” Daniel asked one of the volunteers once we were seven miles in.
“Oh, that was way back there. Back at the fountain,” the man said.
After much cursing, we decided it was easier to just finish off the 20 miles than backtrack to the short route fork. We biked up the 610 feeder, down Memorial, all the while feeling perturbed that we were so much closer to home than to the Convention Center and thus, the end of the ride. Then John got the brilliant idea that we should break off from the route, bike home, and Daniel would take John to pick up his car at George R. Brown.
“That is the best idea ever!” I said, patting John on the back. Suddenly, things looked brighter, hopeful.
“Wait, my car keys are in John’s car,” Daniel said.
Egad! Now we really had no choice but to finish off the 20 miles. I nearly cried when we rode past the Memorial-Washington intersection. So close to home, yet so far.
We reached the car at 3:48 AM, earlier than I’d thought it’d be, later than Daniel had hoped it would be.
“Worst idea ever,” John remarked as we drove home.
Later, he apologized to me for “putting me through this.” But in actuality, I didn’t mind it. It was something different to do on a Saturday night. It was my first time participating in an organized ride, and on a tandem nonetheless. It gave me a chance for some much needed exercise. It felt nice to smell and hear things other than the smells and sights of Memorial Park. I got to say I survived biking 20 miles, my longest ride yet, and felt good about it–no soreness, no pain (other than the bike seat jabbing my crotch for two hours). Mostly, it was nice to do something with my hubby, something he used to do without me. Yes, this is only the beginning. I will slowly invade all his activities, seep into every crack and crevice of his life. Soon we will be one of those couples that can’t do anything without the other. Soon I will learn to golf.
This week, John and I signed up to participate in the upcoming 2010 Tour de Donut on November 7 at 8:00 AM in Katy. The Tour de Donut is a charity bike ride supporting the Texas Gulf Coast and Louisiana chapter of the Make-A-Wish Foundation the largest wish-granting organization that brings joy to children with life-threatening medical conditions. The Foundation first started in 1980 when seven-year-old Christopher Greicius who was undergoing treatment for leukemia wished every day that he would grow up to be a police officer. One thing grew into another, and the Make-A-Wish Foundation was born, becoming big enough to warrant pop culture references (e.g. in “The Wink” episode of “Seinfeld”). In all seriousness, though, the Foundation does some great work, and with a cousin’s one-year-old daughter who died last year from neuroblastoma, I’m all for this line of charity.
The Tour de Donut’s concept is to bike one of two routes (28 vs. 55 miles) in the fastest time possible. A-ha, but here’s the trick. The more donuts you eat, the more minutes get shaved off your cycle time. The irony is blatant, but it’s all in good fun. This will be John’s third year doing the ride, and he said he’s even seen someone make a necklace out of the donuts to munch on while biking. Hardcore. But the grand prize this year, so I hear, are two ski lift tickets to a resort in Colorado. (Can anyone verify this?) So I’d say the snowy fun to be had may be worth the fashion sacrifice of a donut necklace.
This also marks our first supported ride on our tandem bicycle, not to mention my first supported ride ever. Hopefully our KHS holds up. We need a name for our tandem. Any suggestions?
I’ll blog about the Tour experience afterward, but in the meantime, why don’t you down some donuts, ride some bikes, and make some wishes come true? Click here to learn more about the Tour de Donut and register. I’ll see you there with a mouthful of glazed goodness a la Homer Simpson.
Three weeks ago, I attended UT Southwestern’s 2010 Rare Neuroimmunologic Disorders symposium in Dallas, Texas. At the time, it seemed like three long days of sitting in ballrooms listening to medical jargon for eight hours a day; my rear end and brain hurt by the end of each session. But somehow, like Rituxan, I knew it was one of those things where I had to suck it up because in the end, it would be good for me.
When we first heard about the symposium, John had said that the more we know, the better we’ll be equipped to deal with the future. So despite the time and efforts and money it took, we showed up, laptops in tow–mine for note-taking, John’s for amusement should he get bored. (And if you know us, both were inevitable.) The symposium was broken into two sections: the Basic Science side (for physicians and researchers) and the Clinical side (for patients and their caregivers). I mostly attended the Clinical portion except for one discussion regarding stem cell therapy done on the Science side by Dr. Richard Burt from Northwestern University.
After the long weekend, every time I was asked, “So how was it?”, I answered honestly: “Good, I guess. I don’t know. It was hard to sit through all that medical talk.” In truth, I was still digesting all the information–and boy, was there a lot to chew on. I’m not going to bore you with everything I learned. But I must say, in retrospect, I’m really thankful I had the chance to go. I met fellow patients with whom I now keep in touch, some whom I will see again at the 2010 NMO Patient Day in November. One such person I met attended the symposium alone. Her name is Brenda, and she approached me just as I was exiting the restroom. Out of the blue, she asked me about my case, my vision loss, my story. We ended up speaking at length, and when I introduced her to John, she thanked him for being such a supportive husband and taking me to this and sitting through it all. When we told her we were newlyweds, she actually started crying.
“I thought I would have to get better before God would give me a husband, but it brings me such joy in knowing that God loves you so much, he gave you one even after all this happened.” She gestured toward my white cane.
It turns out she is a reverend, and now John and I are on her international prayer list. Thanks, Rev. Bren.
And then there were inspiring stories I heard. Like Jim Leuben, the TMA webmaster. He wasn’t able to attend the event, but he was the one who sent out elaborate emails rallying people to get on board and attend the symposium. I learned from other attendees that Jim is a quadriplegic and does all his emailing and coding by blowing Morse code through a straw. How inspiring is that? So next time all you web developers out there complain about having to code something, think of Jim.
In addition to meeting patients–some coming from as far as Sri Lanka–I spoke to doctors (including Dr. Wingerchuck from the Scottsdale Mayo Clinic who saw me three years ago), nurses, and therapists. I even joined the Accelerated Cure Project (which I’ll blog about soon). The lectures, albeit at times tedious, were incredibly informative. Here are some of the highlights:
So while I knew a lot of what was discussed at the symposium (most attending patients are highly informed about their condition), I still learned a lot. So now if I was to be asked what I took away from all this, I can answer, “I’m thinking about switching neurologists.” [Cue dramatic music.] (to be continued)