The 2017 Guthy Jackson Foundation NMO Patient Day is tomorrow, Wednesday, March 15

Every year when the annual NMO Patient Day sponsored by the Guthy Jackson Foundation rolls around, I get nostalgic since that’s where this blog was born.

Unfortunately, I haven’t been able to attend for quite a few years since I’m always tied up with other events during the Patient Days. I know there are many patients and caregivers who are also unable to attend, and the nice thing is the GJCF will often stream or upload key videos from the day’s events online for worldwide viewing. You can check out this year’s events by visiting the 2017 NMO Patient Day webpage. I heard they’ll be active on social media this year, too, so be sure to check out the GJCF Facebook and Twitter for updates.

If anyone is attending in person or remotely this year, we welcome your comments.

Representing at the 2016 EndMS Conference

Clockwise: EndMS Conference, Lelainia with Juan Garrido, fellow Someonelikeme.ca blogger;  with Dr. Karen Lee, VP of Research, MS Society of Canada; with Dr. Sam David, neurologist, professor McGill Univeristy & grants committee chair.

Clockwise: EndMS Conference, Lelainia with Juan Garrido, fellow Someonelikeme.ca blogger; with Dr. Karen Lee, VP of Research, MS Society of Canada; with Dr. Sam David, neurologist, professor McGill Univeristy & grants committee chair.

Hi Everyone! This is the first chance I’ve had to wish everyone a Happy New Year! I hope everyone had a good holiday season. Today I wanted to share a bit about how I wrapped up 2016.

The first week of December, I flew out to Toronto at the invitation of the MS Society of Canada to participate in HEARMS day (which stands for Hope and Engagement through Accelerating Research in MS) and the ENDMS conference. HEARMS day is an opportunity for junior MS researchers to meet with and learn from MS community members who share their personal perspectives about why research is important and what areas of research should be further explored. (Many researchers only work with lab animals, so they don’t get to interact with the actual human beings their research affects.) We spent an entire day having deep and meaningful conversations and sharing information. It helped remind them who they are fighting for and in turn helped community members understand the impact of the research dollars they raise and the importance of participating in research.

The ENDMS conference was attended by researchers from across Canada and around the world. There were four days of research presentations and while I did not understand 100% of the science presented, I understood a large portion of it. Part of that understanding came from spending the last two years serving as the Community Representative for BC, acting as a lay reviewer on the Personnel and the Clinical and Population Health grant review committees. I’ve read through numerous complicated medical research proposals and as a result, learned a fair bit of the language and concepts. While I was at the conference, I had a conversation with one of the researchers I worked with on the Personnel committee about some research (the anti-MOG research Dr. Levy is doing at Johns Hopkins, in fact) and he made a point of telling me that he could see how much I’ve learned and that I should be very proud of that. I’ve always thought of myself as a hardcore right-brainer, so hearing this from someone who lives and breathes medical science meant a lot.

When I was first asked to attend the conference, I wondered if I would feel intimidated being in the company of about 200 researchers and clinicians. From the moment I sat down with them, there was nothing but mutual respect and deep sense of solidarity in working together. It goes down as one of THE BEST experiences of my life. It was an absolute pleasure and honour to be a part of it.

The rewarding part of having all this amazing insight and information has been being able to share with my community here in BC. Because I have had the opportunity to learn with and from researchers, I have a deeper understanding of the work they do and where MS research is heading.  This allows me to make it accessible to others.  I am able to say “Here’s what I learned and here’s why it matters.” Being able to do this is really gratifying. People cannot champion what they don’t understand. Now when I talk to people about research funding, I’ve got the experience and knowledge to explain exactly what the impact is. It’s very empowering.

As an advocate, I am very passionate about patient inclusion. I believe we bring something very important the table.  I am so grateful that the MS Society of Canada continues to offer me the opportunity to advocate for MS and NMO patients. This is the work of my heart.

23
Jan 2017
POSTED BY Lelainia Lloyd
DISCUSSION 2 Comments
TAGS

Season 4 of Four Senses, my cooking show, currently airs on AMI TV

Since winning MasterChef U.S. Season 3 in 2012, I’ve gone on to co-host my own cooking show. Our studio shoot is in Toronto, which gives me the chance to visit with Jenna at least once a year.

Something of which a lot of people may not be aware is that a TV show’s shoot schedule is often highly intense and squeezed in to a short amount of time. One season of Four Senses, for example, is thirteen 30-minute episodes. We shoot two episodes a day (each one taking about 4 hours to shoot), and we film them all in seven days straight. The reason for this is it’s often very expensive to rent studio space and film equipment, plus everyone on cast and crew are contractors that have other work projects scheduled, so a producer can only snag people for X amount of time.

Many people I meet assume we are shooting each episode the day before it airs, or sometimes, people even think it’s live television (like in the case of MasterChef, people would meet me in the street while it was airing and be confused why I wasn’t in the kitchen that day).

There’s a whole different world called “television.”

I can’t believe it’s been five years since my season of MasterChef shot and aired, and four years since I started Four Senses, a cooking show with an accessible twist. Season 4 is currently airing on AMI TV in Canada on Thursdays at 7:30 PM ET/PT, but if you miss an episode or don’t live in Canada, you can catch the episodes online at AMI’s Four Senses website.

Happy watching and cooking!

16
Jan 2017
POSTED BY Christine
DISCUSSION No Comments
TAGS

Support NMO research today on #GivingTuesday

Thursday was Thanksgiving. Then we had Black Friday, followed by Cyber Monday. Today, instead of overeating and overspending in the spirit of gluttony and consumerism, why not donate to a good cause in the spirit of selfless giving?

#GivingTuesday is your chance to make a difference this holiday season. It’s a way to remember how blessed we are by supporting a cause that could benefit from our donations, whether in time or money.

Of course, since this is a blog about Neuromyelitis Optica/NMO, I urge you to support the Guthy Jackson Charitable Foundation this #GivingTuesday. All of the proceeds donated to the GJCF will be used to fund research for treatment and an eventual cure for this debilitating disease that affects all of us here at NMO Diaries.

To support the effort today, please visit the Guthy Jackson Foundation #GivingTuesday page, and be sure to reference #GivingTuesday with your donation.

Thank you from all of us at NMO Diaries, and spread the word!

Because…SCIENCE!

self-portrait-llcHello again! It’s so hard to believe there’s only a month and a half left of 2016 and then we will be welcoming a new year!

I am still recovering from being so sick over the summer, but am feeling better in terms of energy. I am still in a considerable amount of pain from RA and dreading the idea of having to confront that fact with my Rheumatologist next week. I was told that if the pain didn’t settle, I would likely have to add another medication into the mix. The problem is that the medication in question is an injectable. After having to give myself daily shots for 5 years when I was mis-diagnosed with MS, I am not keen on dealing with constant needles again. The other big deal is that the add-on med is chemo.  I’ve been through chemo before and it’s miserable. The thing is I really can’t go on with the level of pain I am currently in, so we’re going to have to figure this out. I intend to explore my options and see if there’s any way around having to do injections.

In the meantime, I am keeping busy-for the next three weeks I am going to be immersed in medicine from the other side. I am attending a day long MS/NMO ambassador’s annual session out at UBC this weekend. It’s a chance to learn about all the current research the MS Society of Canada is doing and we will also have the opportunity to tour the labs. I am excited about touring the labs because UBC does a lot of important research here in Canada and I know several of the researchers. Getting to peek behind the proverbial curtain will be both fun and interesting.

Next Friday, I am attending an all day meeting for the Association of Registered Nurses of BC’s patient advisory committee. I was invited to serve on this committee a couple months ago and this will be our first chance to meet everyone, set our agenda for the foreseeable future and elect a chairperson. I am looking forward to working will fellow health advocates to improve how healthcare is delivered in our province.

Next weekend is also UBC’s NMO Patient Information Day. It will be good to catch up on the latest in NMO research and clinical trials and to connect with our NMO community. We have a new clinical research coordinator for the CIRCLES study whom I look forward to meeting.

The first week of December, I will be flying out to Toronto at the invitation of the MS Society of Canada to speak to over 100 junior researchers about the importance of MS research. The event is called HEAR MS Day, which stands for Hope and Engagement through Accelerating Research in MS.  I just completed 2 terms as the Community Representative for British Columbia, serving as a lay reviewer for the grants competition and the MS Society of Canada felt my input would be valuable. I am very excited to be a part of this. I will also be attending the 4 day EndMS conference that follows. They are expecting over 250 researchers and health care providers from around the world to attend. There will be scientific presentations, trainee workshops, poster sessions and networking events. I am very much looking forward to contributing and learning.

I have always had a keen interest in medical science. When I was 5 years old, I wanted to be a forensic pathologist, (I know… I was a weird little kid. Clearly, I watched way too many episodes of “Quincy, ME.”) but  I would never in a million years have thought I would be so immersed in the world of medicine, research, education and advocacy the way I am now. I consider myself very right-brained, so all of this really is a departure from my wheelhouse. The thing that hooked me though is the learning-I am never happier than when I am being challenged to learn something new- I will immerse myself and soak up information like a sponge. The other big hook (and to me, the most important one) is the chance to make a difference. Someone I admire very much once said to find the thing you are passionate about and then pursue it with all your might. I am passionate about improving the human condition, especially when it comes to doing everything I can to help advocate for those of us living with NMO and MS. It is an honour and a privilege to be able to serve.

 

Before I sign off, just a quick reminder that UBC’s NMO Patient Information Day is coming up fast. For more information and to register, click here.

14
Nov 2016
POSTED BY Lelainia Lloyd
DISCUSSION 3 Comments
TAGS

Why I love Apple technology

**This post was originally published on my blog on October 28, 2016.

This video shows Sady, a woman with cerebral palsy, using Apple technology to edit videos. What’s mind-blowing is the video was actually edited by Sady herself using the very same assistive technology.

Last Wednesday, Apple announced the launch of their redesigned Apple accessibility website, which now includes videos showing how people of all ability levels use Apple technology to achieve vocational goals and do everyday tasks. These videos not only empower people living with disabilities, they also challenge everyone to rethink what a person can and cannot do regardless of abilities.

As you know, I’ve been a longtime Apple fan, and following my TEDx talk about the importance of inclusivity, I’m ecstatic that Apple continues to make universal design a priority.

Thank you, Apple, for keeping the bar high and being a pioneer for adaptive technology!

Signed,

An Apple Fangirl

P.S. In keeping with their mission, here’s an audio-described version of the above video.

https://www.youtube.com/watch?v=gL2Dh4_F2-M

01
Nov 2016
POSTED BY Christine
DISCUSSION No Comments
TAGS

Recap of my recent trip to Canada

Christine Ha and Carl Heinrich, hosts of Four Senses on AMI

Processed with VSCOWith my co-host, Carl Heinrich, owner of Richmond Station in Toronto and season 2 winner of Top Chef Canada

I was in Canada the second half of September filming the fourth season of my accessible cooking show, Four Senses. TV is much less glamorous than one would think: I get picked up around 6:45 AM every morning. We film two episodes a day, which has me on my feet for most of it, while trying to be energetic, making conversation with our guests, cooking, and then throwing scripted lines to camera. Because I’m vision impaired, I have to memorize my throws and try to find the camera with my eyes at the same time. This was what I did for seven days straight, as we filmed our entire 13-episode season in 7 days. Then after we wrap each day, I have a meeting with our director, producer, and my co-host to go over the next day’s scripts. Then I grab a quick bite and then study the next day’s scripts and guest bios until I finally get to bed around 11 or midnight. Then I wake up before sunrise and do it all over again.

All that said, being part of the industry has given me a new appreciation for the efforts that go into making a TV show. production is definitely labor intensive, and it takes a strong, hardworking team with everyone doing their job to pull it off. A production is only as strong as its weakest link. This season, our team consisted of 23 cast and crew.

What I like about television is the challenges it’s posed. TV really forced me out of my comfort zone—I’m an introvert and not naturally great on camera—and it’s gratifying to work hard together and know we’re doing something that helps others. In our case, it’s making educational entertainment that challenges those who are vision impaired to regain independence by returning to the kitchen.

I had a few days off in between my field shoots and studio run, so I got to see Jenna, her husband Mike, and their daughter Sophie. It was a rainy day, but we managed to grab lunch and some drinks at Mill St. Brewing before I attempted to hit hockey pucks in the downpour. (It was the hockey World Cup, and Toronto’s Distillery District had been transformed into a cocky village complete with carnival stations..)

The rest of our afternoon was spent traversing the mall downtown. My hubs, John, bought a Blue Jays hat, and Jenna and I combed Aritzia while our men discussed with disbelief about how long women can take in a single store.

As always, Jenna and I talked about the goings-on in our lives, how we’re doing with the Neuromyelitis Optica/NMO, and then made sarcastic remarks about everything else. It’s nice to hang out with people who get our illness but whom don’t make it the center of conversation. We may have NMO, but NMO doesn’t always need to have us.

Overall, I had a good experience in Canada (with the exception of some piss-pour service from Air Canada, but I’ll save that for another time). I’ll end this recap with a few notable observations which, I hope, you’ll find amusing more than anything.

What I learned about Canada, Canadians, and Toronto in 2016

  1. Bears are a common sighting during the fall season. Apparently they’re searching for food to fatten themselves up before winter hibernation.
  2. People who live in Toronto are called Torontonians. Despite what I, a Houstonian, might have thought, Torontonians do not eat poutin every day. In fact, they only ingest it late at night after many drinks.
  3. Torontonians really love their Blue Jays. Unfortunately, I was told Toronto now holds the record for North American city with the longest streak without any sports championships. (The former record holder was Cleveland, but the Cavaliers had changed that.)
  4. Three Canadian snacks you should try are ketchup chips, all dressed chips, and coffee crisps.
  5. Many Canadians are wary of Texans. (Believe me when I say not all Texans open-carry guns and support Trump.)
  6. Whenever they find out I’m American, almost every Canadian without fail brings up Trump. Please know I’d much rather talk about Netflix shows, dogs, and poutin.
  7. September is a great time to be in Toronto because the weather is amazing. Get your breezy, sunny days now before the harsh winter sets in.
  8. Toronto has great food. You can get fine dining, French, Caribbean, Japanese, Chinese, Spanish, and American all within a few city blocks.

Till next time, Canada…xoxo!

P.S. Here’s an interview I did with CBC Toronto’s Dwight Drummond about Four Senses.

Four Senses season 4 cast and crew

It takes a village to make a TV show.

My cooking show, Four Senses, is returning for a fourth season

Christine & Carl Four Senses 2 (Varner Productions Limited)

My co-host, Top Chef season 2 winner Carl Heinrich, and me in front of our Le Creuset adorned set

Next week, I’ll fly to Toronto, Canada, to begin production of season 4 of Four Senses, a cooking show geared towards the vision impaired and novice cook. The show airs on Accessible Media, Inc or AMI, but even if you aren’t Canadian and don’t get this channel, you can catch the show on AMI’s website, complete with a fully accessible media player.

If you asked me a couple of years ago if I’d ever thought I’d have a cooking show going for four seasons, I would’ve shrugged and said, “Who knows?” If you would’ve asked me five years ago if I thought I’d ever be on TV, I would’ve laughed in your face. It goes to show you just never know with life—both good and bad things happen to us during the course of our lifetimes, and all we can do is make the most of them.

Every season has gotten better and better, and I attribute it to more support; growing funding; and, perhaps most of all, a stronger and more experienced team of cast and crew. I think you’ll be able to tell the difference in caliber if you watch our first season versus our third and most recent.

I’m looking forward to yet another season. People often don’t realize how much hard work goes into producing a television series—one 30-minute episode takes at least four hours of filming (and that’s not including the out-of-studio field pieces we shoot on a different day, plus the hours of post-production editing). Being in the entertainment industry is not as glamorous as one may think, but I love what I do—it’s the best feeling to wrap a shoot and know that all the hard work everyone put in together will result in something great. It’s an exemplary example of how teamwork is essential to success.

I won’t get too much time off—we shoot our in-studio portions of the season seven days straight (which is how most television production schedules go)—but when I do have a little downtime, I’ll be vlogging and visiting with Jenna.

Canada, here I come!

06
Sep 2016
POSTED BY Christine
DISCUSSION No Comments
TAGS

Guest Blogger Lisa McDaniel talks about: Why she is a strong advocate for NMO Patients

Why?

Why do you do it? How can you work with NMO patients after you lost your son to this horrible disease? Those are questions I hear quite often as I work within the Guthy Jackson Charitable Foundation as well as from those in my personal life. There is a simple yet complicated answer. The simple answer is I do it because I care and because it is important to me. The complicated answer goes much deeper.

For those who don’t know our story, I will give you the short version. Our son, Collin, was barely 5 in 2007 when he first lost his vision. It took a few months before he was diagnosed with NMO. His course was very severe with constant flare ups of optic neuritis as well as transverse myelitis. After 4.5 years of suffering and fighting with everything he had within him, Collin passed away on March 29, 2012, at 9.5 years old (we must remember the .5 according to what he always told us). Yes, it is a very sad story if you stop there. Of course, we were and are still heartbroken and we still miss him tremendously. However, those who have followed this story and lived it with us know our story did not stop after his death.

A google search in early 2008, led me to very negative information about NMO. It also led me to an email group where I met some amazing people online. Those people became my family’s lifeline and helped me to learn everything I needed to know about NMO. I learned about the correct medications for NMO, the differences between medications for a flare-up versus medications for prevention of future flare-ups, what to look for to recognize a flare and other things NMO patients and families need to learn. The information I learned was great, however, well beyond the information I gleaned was the sense of support and family I received.

In 2009, I was able to attend the first ever NMO Patent Day in Los Angeles, CA. It was overwhelming as well as amazing. It was the first time our NMO community had been able to come together outside of the email support group. I met and interacted with doctors who took an interest in Collin and did their best to help us figure out the right combination of medications for him. I remember leaving LA filled with hope for the first time since Collin had been diagnosed. I vowed then to attend every Patient Day I could.

Throughout the years of Collin’s battle, I became close to many of the patients and families, as well as doctors in the NMO community. When Collin passed away, it was devastating to our family, however, it was also devastating to the extended “family” we had met through NMO. It was at then I knew I had to stay in contact with those incredible people, but I also knew it was time to change the role I was in with them. It was time I gave back to them a little of what they had given me and my family. Not long after Collin’s death, I had the opportunity to go to work with the Guthy Jackson Charitable Foundation as the Consulting Advocate.

I am honored to be able to serve the NMO community. I love working with the patients and families as they seek information and support. One of the best things about working with the families is empowering them with knowledge and helping them learn to advocate. Advocacy is very important when a rare disease is involved, whether it is advocating for a loved one or for one’s self. As we build knowledge, we can build awareness in the world and with awareness, a diagnosis may be quicker. Education is important so patients know when to call their doctors and fight for what is needed. We don’t need to have huge plans and goals to advocate, we only need to make our minds up to take any size action. To quote Edward Everett Hale, “I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.”

It is incredible to make a difference in the lives of others. It amazes me how I am called upon to help educate doctors and medical staff about NMO, which in turn helps future patients. I am just a simple mom who wants to make a difference and wants to continue fighting a battle one little boy started. I, like Victoria Jackson, am just a mom on a mission! I have a heart for my NMO family and I have a passion for helping them. That doesn’t make me special, it just makes me willing. I am humbled to continue the work Collin led me to. I am not writing this to toot my own horn, but rather to share a beautiful story with you. Realize, this story is not about me, but about what can happen when a life is changed. If you want to know anything about Collin at all, know he was an incredibly compassionate child and I have no doubt at all he would want me to be helping those who are going through the disease which took his life. I am not stronger or better than anyone reading this and everyone is capable of doing what I do.

Another way Collin encouraged me to make a difference was through The Collin McDaniel Hope Foundation. My family and I started CMHF along with our Co-founder, Johnnie Sue Gilbert, whose son Nathan is living with NMO. It is our mission to make life just a touch easier for families who have children diagnosed with NMO. CMHF helps with medications, travel, wheelchair ramps and other things children diagnosed with NMO may need. While it is a small non-profit, we have been able to help many families in the last 3 years.

While my work is incredibly painful at times, it is also incredibly rewarding. Why do I choose to do it? All because God chose me to be the mom of one little red headed boy who changed my life and touched immeasurable others in his short life. To me, this is Collin’s legacy and that is the real answer to the question, “Why?”.

Teaching blind and low vision students how to cook

**This entry was originally published on Christine’s blog.

Last April, I was invited to teach a cooking workshop at the W Ross MacDonald School in Brantford, Ontario, Canada. A little background on WRMS: founded in 1872, the school teaches blind and blind-deaf students from grades K through 12. There are currently around 200 enrolled students.

With a grant received from the Ministry of Education in Ontario, WRMS created a Healthier Eating Program with the purpose of teaching students the importance of health and nutrition. As part of the program, I was asked to lead a one-day workshop and teach some of the cooking students how to independently prepare a nutritious meal. Many of the students were going to graduate and begin university soon, so as in the spirit of education, there was an emphasis on fostering independent thought and action.

So what should we cook together as a class?

There’s a careful process for curating a menu, whether it be for a fancy gala, an intimate dinner, a festive party, or (in this case) a student workshop. You have to consider your audience; understand the event; and know what’s available in terms of ingredients, equipment, and abilities of the cooks. For this workshop, my audience was high school students with no or limited vision. Soon they will be living on modest college students’ income, so the ingredients and equipment required couldn’t be expensive. I wanted the recipes to be easy so as to not intimidate, yet delicious enough for them to enjoy and want to revisit in their own kitchens. I also needed to encompass the different food groups to provide an array of nutrition. In considering all of these parameters, I decided to teach them how to make Peruvian-style baked chicken with green chile sauce, roasted vegetables, and rice pudding with orange zest for dessert.

Here’s a little known fact about me: I love chicken on the bone. I love gnawing all the meat and cartilage off chicken. The hubs makes fun of me because in the time I take to eat one chicken wing, he’s eaten four. My favorite part of the chicken are the leg quarters, because dark meat is juicy and delicious. It also is more forgiving during cooking, which means it’s harder to overcook. I requested the students cook with chicken leg quarters, but their teacher informed me she’s had trouble getting them to eat unfamiliar things like beans (yes, beans!), so bone-in meat may not go over well with the kids.

“They may get squeamish about it,” she said.

What???

After I thought about it, I decided to refuse the substitution for boneless, skinless chicken thighs. I explained that people need to know where their food comes from: that meat comes from animals that were once living and not from a rectangular styrofoam container at the supermarket.

I said, “I want the students to respect their food.”

The teacher agreed and said hopefully since the “words of wisdom” would be coming from me and not her, maybe they’ll listen.

On the day of the workshop, I actually didn’t get any squeamish vibes from the students when they had to touch the raw bone-in chicken legs. I told them why it’s best to use whole chicken or at least chicken parts most intact and closest to resembling a whole chicken. Since it wasn’t a butchering class (and honestly, I’m not the greatest butcher), we settled on chicken leg quarters.

After the food finished, we all sat down to eat, and everyone enjoyed the mealtime together.

“Best of all,” I said, “you cooked it yourselves!”

The teacher and some of the students were so touched by my inspiring presence, that when they told me how much my time there meant to them, I felt in turn incredibly blessed. It’s always nice to be reminded why I’ve been given the position to advocate for the blind.

This experience of teaching the students at W Ross MacDonald School convinced me I want to open a cooking school one day for both children and adults. Maybe
That’ll be my mission after opening a restaurant and publishing my memoir. I never thought of myself as a teacher, but since my philosophy is to always try new things in life, perhaps opening a cooking school is in my destiny.

21
Jun 2016
POSTED BY Christine
DISCUSSION No Comments
TAGS