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.

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
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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
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Washington D.C and Dr.Levy

Two weeks ago I had an Appointment with Dr. Michael Levy at John Hopkins. Since Eric and I were traveling all the way from Colorado we decided to Make a long weekend trip and see some of the Monuments in Washington D.C. It was my first time to the east coast and it has been over 10 years since Eric was there. We decided it would be best to leave the kids at home and enjoy a couple’s getaway.

 

Our flight left late Wednesday night and we flew into Dulles we arrived at 11:30 p.m. Time we got the rental car and drove to the hotel which was in Old town Alexandria in Virginia. It was 1:00 a.m. so we were exhausted. Thursday morning we slept in little and woke up and explored Old town for a while and had breakfast before heading into D.C. We decided to take the metro train into D.C so we didn’t have to worry about parking and traffic. We got off the train at the National Archives and walked through the National Mall heading to the Washington Monument. I couldn’t believe all the museums at the National Mall. You could spend weeks going through all the Smithsonian Malls and other museums. As we approached the Washington Memorial it was just incredible how tall it was and all the different people from around the world was just staring up to the top of it.

 

Next we walked down to the World War II monument that was very beautiful to see and peaceful. As we headed to the Lincoln memorial we walked right along the reflecting pool. Which is way bigger in person then what you see on TV. When we were at the bottom of the Lincoln memorial I was thinking how am I going to climb all these steps since my NMO Symptoms are starting to hurt from walking so much? I have been walking a ton and I didn’t want to burn myself out since we still want to go see the Vietnam Wall and the White House. When I slowly climbed the stairs to the Lincoln monument and reached the top it was just gorgeous to see! It was remarkable to see how big it is and seeing it on T.V is just not the same. The Lincoln memorial was my favorite memorial to see by far. Once we were done looking at it and reading all the stuff from Lincoln we sat on top of the steps and people watched. I just could not get over how many foreigners where there looking at our American History. The sad part that there were not very many Americans there looking at our history. I had to rest for little bit before we started to walk down all the steps.

 

The next memorial we looked at was the Vietnam wall that was very humbling to see. Just seeing all the names and all the flowers and gifts people leave there at the wall. After that we caught a cab to head over to the White house since I was getting worn down. It was kind of crazy getting out of the cab and having to walk to get close to the White House. Since you can longer drive on the street in front of the white house and the back of the white house. The have barricades up so you can’t even get close to the fence that surrounds the house. The secret Service guys are very on point and can be a little rude and kind of jumpy with people. We simply just walked all around the White house then I had to take a rest on the Southside of the lawn. So we could walk even more to get back to the train station and head back to Old Town. When we arrived back to Old Town we ate at a great Oyster bar called Hank’s Oyster’s I highly recommend checking it out if you are ever in that area. By time dinner was over we were wiped out and ready for bed since we had a 45-minute drive to Johns Hopkins in the morning and I needed to be there at 9:30 a.m.

 

Friday morning bright and early with a Starbucks in my hand we headed off to Baltimore to John Hopkins to see Dr. Levy. Eric was worried that traffic would be very bad and would take awhile to get there. We made good timing arriving at 9:00a.m. I have always enjoyed Dr.Levy I have seen and listen to him speak at Guthy Jackson Patient Day for seven years. I have always wanted to fly out and go see him and I was thrilled I got that opportunity, Dr. Levy and I spent a over an hour going through my NMO history and what issues I would like to address. He would like to switch some medications around and do some blood tests and follow up in a few weeks. Since I have been diagnosed for 8 years there was a lot of information that needs to be talked about. Plus he wants to look at my MRI’s when I was first diagnosed to my latest MRI’S to see how my lesions are doing.

 

After leaving the Hospital we drove around Baltimore a little bit then we went to a crab place that had really good reviews for crab. Eric wanted crabs right out of the bucket. Like when he lived in Virginia Beach. So that was a nice lunch. We decided to take a scenic route back to D.C I wanted to check out Georgetown. LOL it seemed like a good idea but it kind of a pain but we made it to Georgetown the next tricky part was finding parking. It took us awhile but Eric got it done. I wanted to go shopping and stop at my favorite cupcake store Sprinkles! If anyone really knows me I am very addictive to these cupcakes. If I am visiting a city and they have Sprinkle store I will be most defiantly will be stopping by and buying cupcakes. After shopping for a while we headed back to the hotel and rested for a bit and went to a late dinner at a fabulous Southern food restaurant called Hen’s Quarters. It was the best-fried chicken I have had in a long time. We took a nice stroll down King Street after dinner and headed back to hotel cause we were pretty beat.

 

Saturday was a very special day we decided to spend the day at Arlington Cemetery. I wanted to see the tomb of the unknown solider and the changing of the guard. But also were the Kennedy’s are buried. Also I wanted to spend our last day at a place that was not going to be too crowded with people and was going to be not so noisy and just spend a quite day getting ready to go back to reality. I loved watching the changing of the guard and over all seeing the cemetery and seeing where JFK is buried. We spent about 4 hours walking around the cemetery. We headed back to hotel around 3 and went to a local bar and had a few drinks and went shopping a little bit then off to Hank Oyster Bar again because they had the best crab cake we found during our vacation. We enjoyed our last romantic dinner. Since we had an early flight on Sunday Morning.

Now that I am back home I am still waiting to hear back about the blood tests and on Friday I have an Appointment with my neurologist about what Dr.Levy said and the new medications I Need to try. So I will keep you all posted!

http://hanksoysterbar.com

http://www.henquarter.com

https://sprinkles.com

 

img_7027 img_6980 img_6929 img_6910 img_6893 img_6862img_0152 img_6848img_6859 img_6844 img_6831 img_6828 img_6817img_6787  img_6765 img_6764 erin-at-lincoln-monument erin-at-washington-monument

 

 

 

 

 

5th Annual UBC NMO Patient Day

logo-1

 

We would like to invite you to join us for this FREE event open to patients, family members, friends, caregivers, student/trainees or anyone interested in learning more about NMO.

Date: Saturday, November 26th, 2016.

Time: 10:00 AM – 3:00 PM PST.

Location: the Djavad Mowafaghian Centre for Brain Health located at 2215 Wesbrook Mall, adjacent to UBC Hospital along Wesbrook Mall on the UBC Point Grey campus.

Lunch will be provided (gluten-free and non-gluten-free options). Please register attendance and lunch preference here.

Learning Outcomes of NMO Day:

  • Today’s NMO overview: Introduction to NMO, Diagnosis and Symptoms, Treatment Options
  • New NMO research: What is being done worldwide and here in BC
  • How can you get involved
  • UBC NMO Clinic/Research Program: Update and vision for the future

 

24
Oct 2016
POSTED BY Lelainia Lloyd
DISCUSSION No Comments
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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.

Medicinal Marijuana for NMO

Throughout my NMO journey I’ve tried to keep an open mind towards alternative medicines. I’ve had great success with naturopathic care, acupuncture and osteopathy so when many of my trusted friends suggested cannabis, or medicinal marijuana, I thought it worthwhile to look into it. Cannabis has a bad reputation; Many people think marijuana is for a bunch of hippies getting high and eating Cheetos. Others think getting a marijuana prescription is just for those making up mild conditions who want to get high. Whilst both might be true in our world there are some fantastic testimonials from real patients.

I’m not the type to role a joint and get high but throughout my research I discovered CBD oil, or Cannabidiol, which can be consumed with a few drops on food, in drinks or straight under the tongue.  You can even diffuse CBD oil but others in the room will also feel the effects. There are many strains that have low or no THC levels, which is the component that gives the feeling of being high. I was transparent with my family doctor that medicinal marijuana was something I was considering. He was honest that he didn’t have extensive experience nor could he prescribe it but he did refer me to a reputable clinic that did.

marijuana

I’m fortunate that a close friend happens to be a key sales rep for one of the major distributors of medicinal marijuana products in North America. He spent a lot of time understanding my symptoms and suggesting the best CBD oil products. Here are my take-aways of CBD oil:

  • It still stinks. If you dislike the skunky smell of marijuana you still won’t like the oil.
  • Marijuana strains are very different and have names like Indica, Sativa or Hybrid. ie. Some help with insomnia, pain management, fatigue and/or several different combinations.
  • Each production changes so although manufacturers try to keep the potency levels as close to the last run it’s never exact. Remember, marijuana is a plant.
  • Because of production changes, prescriptions suggest amounts but the patient will need to dose up or down for each new bottle.

I tried CBD oil for several days and I’ve made the decision it isn’t for me. I dosed up and then more (and then more) and could never get the same relieve prescription medication provides me. I struggled with the taste (it was not that noticeable but did have an aftertaste) and after a certain amount I did feel somewhat paranoid. The one positive about CBD oil was that it helped with my insomnia but my other needs were not met. I felt frustrated trying to convert the prescribed grams into millilitres and then into how many drops that translated into.

I think there’s a place for medicinal marijuana but we’re still in the infancy stage. Doctors don’t have enough historical data to understand how the drug might best help different diseases. I can certainly see how marijuana might one day be part of the treatment plan for NMO patients and I know many who already do. The marijuana drug industry is regulated (and legal in many countries and states) but it’s tough for governments to monitor it. Uneducated patients may purchase from small retailers instead of one of the larger manufacturers direct and might purchase marijuana that is unsafe (ie. With pesticides or cross contamination). If you do decide that medicinal marijuana is something you want to try spend the time researching and choose a reputable clinic, doctors and distributors.

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
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The Whirlwind That Was May

 

Operation Med School, UBC, May 2016

Operation Med School, UBC, May 2016

May is MS Awareness Month in Canada. This means it’s been a crazy busy month in terms of advocacy. I am an MS/NMO Ambassador for the BC-Yukon Division of MS Society of Canada. This means that I am invited to attend various events to share my story and talk about the important work the MS Society does.

At the beginning of May, I spoke at Operation Med School at the University of British Columbia. This is an annual day-long conference for grade 12’s and undergraduates who are interested in medicine. I gave four presentations on the MS Society and what it’s like to live with MS and NMO.

I had a hands-on experience that I shared with students to simulate some of the symptoms MS and NMO patients deal with every day. Volunteers were asked to put on one high heeled shoe and one swim flipper and then try to walk a distance. This gave them an idea how hard this is to do when your balance and gait are affected. None of them could walk without holding onto the table for support. When I asked them if they felt they could walk around campus like this for a whole day, all of them said no. I then had volunteers put on a pair of oven mitts and asked them to do simple tasks like undo and tie their shoe laces, undo and do up buttons on their shirts and zip and unzip their jackets. This helped them understand what it is like to have numbness and the loss of small motor skills in their hands, something I live with every day. Finally, I passed around a pair of safety glasses which I altered by painting the lenses with white glue. I asked them to try them on and then attempt to read the NMO pamphlets I’d handed out. This illustrated what it’s like to have optic neuritis.

With Port Coquitlam Mayor Greg Moore

With Port Coquitlam Mayor Greg Moore

 

In front of Port Coquitlam City Hall with the proclamation.

In front of Port Coquitlam City Hall with the proclamation.

My second event in May was attending the Port Coquitlam City Council meeting to accept a proclamation for MS Awareness month and to give a short speech. Mayor Greg Moore and the Council members were very kind and welcoming. I had 5 minutes to speak, so I spoke like the wind! I talked about MS, the work the MS Society does, shared my story and invited everyone to the Tri-Cities MS walk. In addition to City Council there were also members of the public in attendance as well as the media, so I made the online edition of the paper the next day.

My final event for this month was to speak on a panel for the UBC Faculty of Medicine. Students from a variety of health disciplines attended and I spoke to two groups for 30 minutes about my experiences living with NMO and about patient-centred care.

May 25th was World MS Day and I was busy all day on social media raising awareness for NMO testing. We had excellent support from the MS Society of Canada as well as a number of my friends in helping spread awareness. The Canadian MS society also made a number of videos on this year’s theme, “Independence”. My friend Peter Schwartz-Lam spoke about something I’d said back in January during the grants review process. He did a beautiful job sharing the spirit of what I’d said. See for yourself:

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That’s my selfie up in the top left hand corner!

Last night I received a really lovely thank you email from the BC-Yukon Division of the MS Society. It’s always nice to know your time and energy are appreciated. It’s been a real struggle this month health-wise, but it meant a lot to me to be able to do this work. I am grateful, as always to have had the opportunity to serve.

30
May 2016
POSTED BY Lelainia Lloyd
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