the blind tenor

Andrea Bocelli

Andrea Bocelli

On Wednesday evening, I had the privilege of attending Andrea Bocelli’s concert. I first fell in love with the tenor’s music in 2003 when I was stuck at home on disability after my worst NMO attack. I had nothing to do except read books and watch TV. I became addicted to HBO‘s “The Sopranos”; I would watch episode after episode on DVDs rented from Blockbuster, often spending eight hours a day following Tony, Carmela, Big Pussy, and the crew around, watching them get in and out of all sorts of trouble. In the episode entitled “Commendatori” in the second season, Tony and some of his crew members travel to Italy for business. Tony’s wife, Carmela whom Tony leaves back in Jersey, begins to doubt her marriage with the mob boss. I was especially moved in this epsidoe–the acting is so good, the plot line getting better–and my emotions were attached to the musical choices. Bocelli’s “Con Te Partiro” was played multiple times throughout the episode, culminating in a final play over the ending credits right after the camera zooms in on Carmella’s quiet reaction when Tony finally returns home.

Immediately after the episode finished, I searched online for the songs played in “Commendatori.” I had never heard the song before but I had such an instant attachment to the song. I downloaded it, and in the meantime, I looked for more songs sung by the artist, Andrea Bocelli. I found “Ave Maria” and “Nessun Dorma,” which happens to be the song Paul Potts sang to win 2007′s “Britain’s Got Talent.” Bocelli’s songs were on heavy rotation on my iTunes for several weeks.

Fast-forward to May of this year. It was our wedding day. The instrumental version of “Con Te Partiro” was played on the piano when I walked down the aisle. Ever since I’d first heard the song seven years ago, even before I’d met my groom, I knew it would be the song I’d walk down the aisle to. “Con Te Partiro” literally means “with you, I will leave” in Italian. The English version of the song that Bocelli sings with Sarah Brightman, who was married to musical composer Andrew Lloyd Webber and perhaps best known for her role as Christine in The Phantom of the Opera, is entitled “A Time to Say Goodbye”. With either title, I thought it fitting for the bridal procession: in the English version, I was saying goodbye to my dad, and in the Italian version, I was going with my new husband. Above all, I simply loved the beautiful, majestic elegance of the song.

So after years of auditory admiration, imagine my excitement when I found out Bocelli was coming to Houston. The concert was grand: he spent the first half singing both solo and duet opera and the second half singing pop Christmas songs from his latest album. My favorite, of course, was the last two songs of the four-song encore when he donned a cowboy hat and sang “Con Te Partiro” and “Nessun Dorma.” My eyes got wet, it was that touching.

What makes this tenor even more amazing besides holding the record for having most albums sold by a solo classical artist is that he is also blind. Born with congenital glaucoma, he completely lost his eyesight at age 12 after a soccer accident. At Wendesday’s performance, Bocelli was either guided by the maestro or his duet accompaniment each time he entered and exited the stage. He even danced a little dance with one of the singers. He managed to sing to a packed house at Toyota Center, not letting his blindness impede him from doing what he loves and doing it well. Like his music, I find Bocelli himself inspiring. Thanks, Andrea, for giving unto the world your talents despite your obstacles.

best fried chicken ever?

Babe’s Chicken Dinner House
1456 Belt Line Rd. #171
Garland, TX 75044
972-496-1041


5/5 drumsticks

Note: Sorry, no photos for Babe’s; the restaurant was just too dark.

We enjoyed trying out a new place in Dallas, but then I had to return to an old favorite. Every time I go to Dallas, I have to eat Babe’s. I first discovered the Southern cookin’ delight in 2005 thanks to Karen who took me to a fast food version of the diner. The last two times I ate Babe’s, however, it was at their actual restaurant which has the feel of a true Texas eatery with its heavily wooded interior and the quaint Southern drawls of the surrounding staff and patrons. I prefer this Belt Line location because ambience and atmosphere often add to the elemetn of experience.

But most importantly, the chicken is damn good. How it works when you dine in is you choose a meat (entree)–pot roast, chicken fried steak, chicken fingers, fried catfish, etc.–and then the sides come “free” with the meal. I highly recommend the fried chicken; even though I haven’t tried any of their other dishes, this is their signature entree. For $11.99, you get the entree (in our case, it was a basket full of fried chicken), crushed buttered corn, green beans, buttery mashed potatoes, and biscuits. The fried chicken is completely awesome. The skin is fried to a golden brown: crunchy and full of all the right flavors. It isn’t too salty, which is a problem a lot of tasty fried foods seem to possess. The corn and mashed potatoes were yummy (probably full of butter) but I found the green beans a little too “canned”-tasting.

John says this is the best fried chicken he’s ever had, and I may have to agree (although I’m sad to say I think my husband may have a more discerning palate than me). Better than Popeye’s, Frenchy’s, KFC‘s original recipe, and Catalan‘s gourmet fried chicken. Besides improving the green beans, the only thing I’d say would make the place even better is if they’d start serving sweet tea. I mean, sweet tea is a Southern thing, so why not?

burgers in dallas

Twisted Root Burger Co.
2615 Commerce St.
Dallas, TX 75226
214-741-7668


4/5 buttery buns


U.F.O. beer

I like 'em milky.

Note: There are more than one Twisted Root locations so click on the link above to find the most convenient one for you.

Within the past few months, John and I had taken a trip to Dallas and L.A., both for NMO conferences of some sort. While the forefront of the trip was for learning about the latest NMO issues, the rest of the time was spent in search of good food.

Before heading up north, I did a little research into the must-eats of Dallas. After talking to a classmate who grew up in the Big D and poking around online, I settled on two places: Twisted Root and a place to be named next time.

Apparently Twisted Root has been featured on “Diners, Drive-Ins and Dives” on the Food Network (whose host John can’t stand). But in spite of my husband’s loathing of Guy Fieri with his backwards sunglasses and wrist sweatband, we decided to pay the burger joint a visit for dinner.

Burger

Love 'em buns.

I ordered their regular cheeseburger, John had their turkey burger, and we ordered a side of fried pickles. While waiting for our to-go order, I tried a U.F.O. unfiltered wheat beer which I really liked. (I even might dare to say it’s my current favorite beer. I found it at HEB recently and have yet to pop one open so I will have to do the taste test again soon.) Clientele are given pop icon identities while they wait for their orders. So instead of listening for just boring old “John” or “Blind Cook” to be called, we got to be Walker, Texas Ranger for a few minutes. (And who doesn’t want to be Chuck Norris if only for ten minutes?)

The fried pickles turned out way too salty even with the ranch dip. And since I lost my fried pickle virginity to Pluckers back in college, my heart belongs to the Austin joint’s spear-cut pickles which I find superior to the chip-style cut. Cutting them into spears allows for a better crunch; cutting them into chips allows for saltier, greasier batter. And while I know many would argue the latter’s merits, I’m just biased, okay?

The burgers, though, were definitely good. My personal opinion is that the meat and the bun are what make the burger. The meat has to taste like juicy, flavorful beef. It’s gotta have a little bit of that bloody taste to it. It may sound gross, but the truth is if the patty tastes more like cardboard than cow, then it’s an inferior product. The bun is also important. It should be a little buttery, a little toasty. Not soggy, but not cut-the-roof-of-your-mouth crunchy either.

Fried pickles

Taste that juice.

John really liked his turkey burger. I liked my regular beef cheeseburger, too, but I felt my meat was slightly overcooked, resulting in a texture a tad tougher than I prefer. I know, I know. This is coming from the girl who used to order her burgers rare. (In my defense, this was before I learned about mad cow and other health risks concerning ground meats.) But I can’t fight my taste buds, and they like the carnal taste of a little animal blood, not to mention the chewy bits of cartilage. But I still give Twisted Root a 4 out of 5 because their buns were pretty awesome.

Overall, I would definitely go there again. I have yet to taste the perfect burger. In Houston, many claim it’s Beck’s Prime. Others say Pappas. Still others say Christian’s Tailgate or Petrol Station or the classic Fuddruckers. Like the perfect taco, I will eternally be on the hunt for a perfect burger. Who makes your perfect burger?

like humans, accessibility aids are imperfect

Don’t get me wrong. I love my Apple products. In fact, there will be upcoming posts raving about how great they are, and I’m not just saying this because my husband is an Apple geek nor because I have a need to fulfill the Mac user stereotype. I say it because Apple products with their VoiceOver feature are, as a whole, the most advanced in accessibility functions for the visually impaired. But like all things of this world, VoiceOver is not perfect. Or is it me as a human being that’s not perfect? I’ll tell you the following story, and you decide for yourself.

I am part of this network that often sends announcements to their members via email. The emails are always from Donna Tripley, who I assumed was the network’s PR rep. The network is small and emails from them are sparse–I maybe get one once every two years. I don’t know most of the people in it personally, so imagine how surprised I was when the other night, as I was sifting through Twitter on my iPhone, I read a tweet from a fellow grad student. It read: “I hate getting emails from Donna Tripley…”

What? I thought. Donna Tripley sounds so familiar. Isn’t she that network rep? Is my fellow grad student part of this network too?

I was a little giddy–you know that feeling when you find out you’re somehow connected to someone in more ways than one. But because I hadn’t seen the name Donna Tripley in so long, I wasn’t sure if it was this network or something else that my schoolmate and I had in common. So naturally, I decided to google Donna Tripley to see which organization she worked for. What would we do without Google nowadays?

Unfortunately, “Donna Tripley” returned no notable results. So I returned to the tweet to check on the spelling of Ms. Tripley’s name. Perhaps I spelled her last name wrong. I scrolled over each letter of Donna’s name using VoiceOver’s character mode, starting with her first name, and guess what I discovered?

Donna Tripley is really spelled “donotreply.”

That’s right, all this time I’d been getting automated emails from a “do not reply” account, I thought it was a woman named Donna Tripley. All because VoiceOver is not perfect and read aloud the words to sound like a name, a Donna Tripley to be exact. Sigh.

I told my husband who couldn’t stop cracking up at my foolishness. But I beg your pardon. Is it my fault, or VoiceOver’s?

pumpkin cheesecake

Pumpkin cheesecake

Don't let the two pounds of cream cheese scare you away.



Ah…now finally we come to the dessert portion of our grand Thanksgiving holiday meal. Naturally, it’s often a pie of some sorts, pumpkin or apple. But this year, I also decided to put a twist on the dessert and make a pumpkin cheesecake a la Cheesecake Factory style. What better way than to use up all that leftover pumpkin from Halloween than to bake it in a dessert?

When I was younger, I loved cheescake, especially the chocolate covered kind from Olive Garden. But as I got older, I found the cake too rich and creamy for my taste. I came across this recipe, however, online through the Food Network website, and all the reviews said even though they didn’t like pumpkin or didn’t like cheesecake, this hybrid dessert was to die for, a full five stars. I’ve also never had the pumpkin cheesecake at Cheesecake Factory, but I figured John loves cheesecake, so why not try to make this fully from scratch using our homemade pumpkin puree instead of the canned variety?

A funny story on the side about the pumpkin puree. We had spent all that time as described in this post to create this pumpkin puree from a leftover Halloween pumpkin. But when we were at the grocery store the other week, we passed by rows and rows of canned pumpkin puree, all going for less than $2 each. If I calculated it out, we basically saved 50 cents an hour by making it ourselves. We are some damn cheap labor.

Anyway, back to the cheesecake. We used the food processor to ensure even mixing but forgot to add the spices until after we had already poured it out into a bowl. The hand-mixing post-spices was a mistake because not all of the spices were distributed evenly, and we would get an occasional mouthful of ground ginger or ground cloves in the end product. Regardless, I was very happy with my first attempt at making cheesecake and pleasantly surprised that if you use a pre-baked graham cracker crust, the recipe really wasn’t that tedious. Warning, though: this dessert is not for the weight-conscious. I guess you could try using fat-free sour cream and cream cheese. Let me know how that turns out.

And this concludes our edition of the Thanksgiving series. You can whip up any of these recipes for Christmas, too. Remember, if the Blind can Cook a fabulous feast, so can you.


Recipe: Pumpkin Cheesecake

Summary: Original recipe from Food Network‘s “Almost Famous” collection, which calls for a crust made from scratch

Ingredients

  • 3 (9″) pre-baked graham cracker crusts
  • 4 (8 oz.) pkgs. cream cheese, softened
  • 2.25 c. white sugar
  • 1/4 c. sour cream
  • 1 (15 oz.) can pumpkin puree
  • 6 lg. eggs at room temp., lightly beaten
  • 1 tbsp. vanilla extract
  • 1 tsp. salt
  • 2.5 tsp. ground cinnamon
  • 1 tsp. ground ginger
  • 1/4 tsp. ground cloves
  • 1/3 c. toasted pecans, roughly chopped (optional)

Instructions

  1. Position rack in the center of the oven and preheat oven to 325 degrees.
  2. Beat the cream cheese with a mixer until smooth. Add the sugar and beat until just light, scraping down the sides of the bowl and beaters as needed. Beat in the sour cream. Then add in the pumpkin puree, eggs, vanilla, salt, and the spices. Beat until just combined. Pour into the crusts.
  3. Bake until the outside of the cheesecake sets but center is still loose, about 35 to 40 min. Then turn off oven and open door briefly to let out heat. Leave cheesecake in oven for 30 more min. Let cool on a rack. Cover and refrigerate at least 3 hrs. or overnight. Serve with a sprinkle of pecans.

Variations

My version of this recipe makes three 9″ pie-sized cheesecakes. If you prefer to make one thicker, larger cheesecake, use the same ingredient measurements but refer to the original recipe linked above to make the graham cracker crust from scratch. With busy lives, though, I figured who had the time? Too bad I can’t say my cheesecake is 100% made from scratch since the crust wasn’t, but hey, the pumpkin was.

Cooking time (duration): 50

Diet type: Vegetarian

Meal type: dessert

Culinary tradition: USA (Traditional)

Microformatting by hRecipe.

fighting fatigue: why cyber monday trumps black friday

Many of us who live with NMO (and almost all other autoimmune diseases, for that matter) experience fatigue. Fatigue is one of those funny things to have: externally, nobody can tell you’re suffering from it but internally, you just can’t help feeling like a big sloth. Even my husband who loves me dearly (but who can’t possibly know what it feels like to be me) often says, “You’re always tired!”

Because NMO affects our neurological system, it is often frustrating to feel certain sensations (e.g. pain, tingliness, numbness, temperature changes) and have them not manifest on the outside of our bodies, a “proof” of some sort. Oftentimes, I feel like when I tell people how crappy I’m feeling, they look at me strangely and nod knowingly, pretending to sympathize but really not fully believing the extent of my complaints. After all, open bleeding wounds you can see. But not pins and needles poking you from the inside. For many of us A-type personalities, fatigue is especially a thorn in our side as we prefer to be on the go but this thing prevents us from doing so, and the self-critical devil on our shoulder taunts us, saying others will think we’re just being lazy, that we’re faking it. And thus is the complexity of fatigue.

As you can tell from my previous posts, I had quite a Thanksgiving. It was the first one in almost a decade that I’d cooked, with the help of my sous chef husband without whom I could not have pulled this off, a feast almost entirely from scratch (with the exception of the stuffing and corn). The food was insanely delicious–even with nearly 30 pounds of turkey, we had only three legs left over at the end of the night. Yes, our guests tore it up; many of them even said it was the best turkey they’d ever had. But despite the happy stomachs and good times, all the preparations and festivities left me exhausted. When asked if I planned on doing any Black Friday shopping, I could only look aghast: “Are you kidding me? Who has the energy?”

Apparently, everyone without NMO (and even some with NMO) does. The truth is everyone shops on Black Friday. It’s Christmas on steroids. It’s sad, really; this magical season turned consumerism. On Wednesday afternoon, John and I counted twelve people already waiting outside Best Buy for Black Friday. Folks, I said Wednesday afternoon. That means they were going to wait over 48 hours, through rain and cold, to save a few bucks. Okay, so I know the times are hard, but seriously…48 hours?!

Last night, I asked John if he remembered when this ridiculous tradition of Black Friday began.

“I don’t know. Maybe two or three years ago?”

No way, I said. Black Friday had to have been around since the ’90s. But neither one of us could determine when people started staying up all night to line up outside Wal-Marts, Best Buys, and outlet malls to flood the aisles at door’s open to grab and claw at discounted items. And where did the term “Black Friday” come from anyway?

According to this site on Black Friday history, the term was coined as early as the 1960s when accounting books were kept by hand, and stores were said to move from the red (indicating a loss) into the black (profit). Ever since the first Macy’s Thanksgiving Day parade in 1924, the Friday after Thanksgiving was the official kick-off to a bustling holiday shopping season. Then in the 1960s, the Philadelphia police dubbed the day after Turkey Day “Black Friday” when complaining about the traffic and pedestrian congestion on the streets.

I can’t recall a time when I actually stayed up all night or woke up extra early to make it to a door buster sale on Black Friday. And now that I’m blind, the chance of me doing so is even slimmer. I already loathe crowds to begin with, and when you have poor vision, the noisy herd of people pushing and poking at you is just not worth the stress when you can’t see well enough to be on guard. It is an over-stiumulation that easily exhausts me.

Which brings me to my topic of why Cyber Monday trumps Black Friday. Cyber Monday is indeed only a few years old. Started in 2005, Cyber Monday denotes the Monday after Black Friday when people have returned to their usual routine yet still itch with the shopping bug do most of their shopping online. Following in the suit of Black Friday, online stores (whether they have an actual brick and mortar store or not) deeply slash their prices in order to up their internet sales. And many stores like Best Buy, offer almost all of their Black Friday deals online. You can see if the item’s sold out at the click of a mouse, and you don’t have to wait in line. That’s exactly what we did the last two Black Fridays when we wanted those Samsung TVs.

Shopping online is the biggest convenience, especially for blind people. You don’t have to deal with crowds, you don’t have to figure out how to get to and from the store, you don’t have to wait in long checkout lines. You simply use JAWS or other screen readers to find what you want and click “Confirm Order.” And volia! You’re done. And you did it all in the comforts of your own home or office.

In pondering participation in the Advent Conspiracy, I didn’t plan to do a lot of shopping this year anyway. But when I woke up this morning with all these great deals in my email inbox (like the $10 off a $25 purchase and free shipping at Origins), I might have to do a little shopping after all. And the best thing is I would not have stayed up all night standing out in the cold waiting for these deals. And I then had the energy to pump out this post.

slow-cooker mashed potatoes

Happy “Gobble, Gobble” Day! You didn’t think I would forget to post anything on the biggest binge eating day of the year, did you?

As mentioned in a previous post, I always serve up fried turkey, broccoli rice casserole, StoveTop stuffing (I like the chicken flavor best), kernel corn, and Betty Crocker Homestyle mashed potatoes (get the butter & herb flavor). This year, I’m going the extra mile and will make the mashed potatoes from scratch.

I’ve made mashed potatoes from scratch before in college, and it’s often turned out to be a disaster. It’s utterly time consuming; even with a hand mixer, my arms ache from mashing pounds and pounds of potatoes; and the end result is never as good as that darn Betty Crocker woman’s boxed kind. Regardless, I’m going to try this recipe I found online this year. What attracted me to it (besides the positive reviews, of course) was that it utilizes the slow-cooker. I am a fan of the slow-cooker–even though most of the dishes I’ve had that came from a slow-cooker were never anything to rave about, I like that you can just throw in all the ingredients and forget about it for hours. With John and I having such busy lives, anything convenient is welcome in our kitchen. Of course, I don’t like to sacrifice quality and taste for convenience, so if this pot of potatoes turns out under par, you can bet I won’t hesitate to throw the recipe out.

Making these mashed potatoes will give us the chance to try out this Cuisinart hand blender that we received for our wedding shower. A friend had told us it was the “new thing” in contemporary kitchens, but the last few times I’ve tried to use it, I only managed to make a mess in the kitchen. I think of it as a substitute for a hand mixer, but I think it’s more of a blender. All the cookie dough I’ve used it on ended up splattered across our blacksplash. Oops. Hopefully it will redeem itself with these mashed potatoes. If not, it’s time to get one of these for future baking and just use the fooc processor for mashing potatoes.

Recipe: Slow-Cooker Mashed Potatoes

Summary: Original recipe from All Recipes

Ingredients

  • 5 lbs. red potatoes, cut into chunks
  • 1 tsp. minced garlic or to taste
  • 3 cubes chicken bouillon
  • 1 (8 oz.) container sour cream
  • 1 (8 oz.) pkg. cream cheese, softened
  • 1/2 c. butter
  • salt & pepper

Instructions

  1. In a lg. pot of lightly salted boiling water, cook the potatoes, garlic, and bouillon until potatoes are tender but firm, about 15 min. Drain, reserving water.
  2. In a lg. bowl, mash potatoes with sour cream and cream cheese, adding reserved water as needed to obtain desired consistency.
  3. li>Transfer mixture to a slow-cooker, cover, and cook on low for 2-3 hrs. Just before serving, stir in butter and season with salt & pepper.

Quick Notes

I like to leave the peels on the potatoes because: (1) it’s less work, (2) it adds taste and texture, and (3) it’s where the nutrition is.

Cooking time (duration): 30

Diet type: Vegetarian

Meal type: dinner

Culinary tradition: USA (Traditional)

Microformatting by hRecipe.

green bean casserole

Every Thanksgiving, I serve fried turkey and broccoli rice casserole (which I make from scratch), and corn, stuffing, and mashed potatoes (which I don’t make from scratch). The sixth side always changes from year to year. First it was asparagus (which I later realized is a mistake because asparagus is apparently out of season in November). Then it was steamed green beans which turned out to be very boring. I knew I wanted this fifth side dish to be something green since so many of the other dishes were not as nutritious, and we all know Thanksgiving is the week of binging on high-calorie, high-sodium foods, so I figure why not throw something a little more healthy in there? Well, the steamed green beans were too healthy, and so this year, I will settle on a compromise between healthy and tasty. I will make a green bean casserole. (Okay, I know with these canned beans and all the cheese, sour cream, and butter, this is far from healthy, but I’m deluded into thinking anything green = good for you.)

Casseroles never sound that tasty to me; I always think of a slop of leftover ingredients piled on top of each other in a baking dish and thrown into the oven until it all melts together into some congealed mass. I think of it as the American version of fried rice: its sole purpose is to use up leftover food, and anything goes. That is, until I made that broccoli rice casserole some nine years ago. Then I thought, Maybe, just maybe, casseroles don’t all have to be nasty.

Fast-forward some years later to 2007 or so. Our church catered our holiday dinner from Cleburne Cafeteria. I had the first enjoyable green bean casserole. So now in 2010, I will attempt to make a version of this homestyle favorite.

I do have to admit that the great thing about casseroles is their ability to be prepared ahead of time. For example, today I will prepare both the broccoli rice and this green bean casserole, cover it securely, and refrigerate it until it’s ready to go straight into the oven. So go ahead and prepare these casseroles today, then bake it tomorrow. For big holiday dinners (or just any time you’re entertaining), it’s nice to have a repertoire of dishes that can be prepared ahead of time so that you don’t find yourself scrambling to do everything last minute on the day of.

I’ve found that typical green bean casseroles contain condensed cream of mushroom and are topped with a layer of fried onions. I found this alternative version of the dish which uses sour cream and Ritz crackers instead. Once it’s out of the oven, we’ll take a photo and upload it, and I’ll adjust the recipe according to my personal taste and experience.


Recipe: Green Bean Casserole

Summary: Original recipe from All Recipes

Ingredients

  • 2 tbsp. butter
  • 2 tbsp. all-purpose flour
  • 1 tsp. salt
  • 1 tsp. white sugar
  • 1/4 c. diced onion
  • 1 c. sour cream
  • 3 (14 oz.) cans French-style green beans, drained
  • 2 c. shredded cheddar cheese
  • 1/2 c. round butter cracker crumbs (Ritz)
  • 1 tbsp. butter, melted

Instructions

  1. Preheat oven to 350 degrees.
  2. Melt 2 tbsp. butter in a lg. skillet over med. heat. Stir in flour until smooth, and cook for 1 min. Stir in the salt, sugar, onions, and sour cream. Add green beans and stir to coat.
  3. Transfer mixture to a 2.5 qt. casserole dish. Spread shredded cheese over the top. In a sm. bowl, toss together cracker crumbs and remaining butter, and sprinkle over the cheese.
  4. Bake for 30 min. or until top is golden and cheese is bubbly.

Quick Notes

French-style green beans are the skinnier version of regular green beans. Often they are cut lengthwise into thinner strips.

Cooking time (duration): 45

Diet type: Vegetarian

Meal type: dinner

Culinary tradition: USA (Traditional)

Microformatting by hRecipe.

recap: 2010 nmo patient day

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:

  • There was a study in France showing that women with NMO actually experienced a decrease in relapse risk during pregnancy. (I have a friend with lupus who said the same happened for her; perhaps this points to a link between hormones, immunology, and disease remission.) Postpartum, however, the risk for relapses is higher than usual. This means there is a very small window in which one can get pregnant and have her baby safely before having to get back on her meds right away. This also means breastfeeding is unlikely.
  • Both Dr. Wingerchuck and Dr. Greenberg follow Dr. Bruce Cree of UCSF‘s protocol of reinfusing a patient with Rituximab every six months regardless of whether or not the B-cell count has risen. My current neurologist does NOT do this, and this is something that’s been on my mind lately because I’m thinking of switching to Dr. Greenberg in Dallas but at the same time do not want to have more frequent rounds of Rituxan.
  • Receiving prompt treatment (e.g. Solumedrol) for acute NMO attacks is extremely important as the immediacy of the treatment is directly correlated to the legnth of the recovery process. In the UK, there is a medical card patients carry with them, and whenever they enter a doctor’s office or the ER, the card can be scanned to pull up the patients’ entire medical records, including a protocol put into place by his/her neurologist on how to treat acute attacks. The U.S., of course, does not have socialistic medicine, so this method would not work. But the importance of having such a treatment regimen in place is recognized. I can attest to the frustrations of going to the ER for an acute attack and having the medical attendant stratch his head, asking me, “How do you spell your condition again?” It’s tiring when you have to conduct your own treatment in the face of pain, paralysis, incontinence, blindness. If NMO has taught me anything, it’s that doctors are just as humanly fallible as the rest of us.

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.

my second organized tandem cycling experience ever

Shipley's

Mmmmmm...donut...

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…

1 18 19 20 21 22 26  Scroll to top