Christine’s take on NMO Patient Day 2013

Wow. Looking back, I have not had a chance to write a blog post in over a year. But because after NMO Patient Day a couple of weeks ago, and Erin, Jenna, and I finally had a reunion without the men, we talked about our defunct blog and how we should try to resurrect it, as many had originally sought information and empathy here.

NMO Patient Day is a conference of sorts, sponsored by the Guthy Jackson Charitable Foundation, and held for one day once a year. It’s a chance for NMO patients from all over the world to gather in one place (always L.A. As that’s where GJCF is located) and meet each other and have access to physicians and clinicians and others working towards not only a higher quality of life for those living with Neuromyelitis Optica/NMO, but a cure.

Erin, Jenna, and I’d met at 2010’s Patient Day, and because we live in Denver, Toronto, and Houston respectively, and because we all live very busy lives, it’s hard for us to catch up, let alone update this blog regularly. But after speaking at this year’s Patient Day about my journey on “MasterChef” and what it means for the bigger picture to me and my fellow NMO-ers, I thought I would drop by here and say hello…

…so, hello!

It’s funny because a year ago, I was terrified of public speaking. A large percentage of the public polled say they fear public speaking more than death. Well, I don’t know about that. But I do know that I’m the kind of person that likes to challenge myself. And that means, whatever it is that causes me discomfort or fear, I tend to put myself in the situation, face it head-on, and try my best to conquer it. That goes for skydiving, snowboarding, going on national (and now international television) to compete. And now, it means speaking before large crowds.

Because I am blind, and because I still cannot read Braille as quickly as I used to read print, I don’t take any notes up to the stage with me when I speak. Instead, I have to memorize bullet points in my head and hope that I hit upon all my key points and in a cohesive order. I never like to rehearse my talks because I feel it takes away from the casualness of it all—and I prefer to keep it casual, not just because that’s my style, but because formality scares me even more. (There’s something about formality that breeds an expectation of perfection.)

But here we were, a couple of weeks ago at Patient Day, and it was probably my twentieth speaking engagement since last year. I still get nervous: my body temperature still drops, my mouth still gets dry—but at least I don’t want to puke anymore. It’s all about the little progresses, right?

Thank you to all who made NMO Patient Day happen, either by coordinating or attending it. I’m glad I met more of you, and I’ll try to put a voice to the name for next time.

And if you didn’t get a chance to attend this year’s Patient Day, stay tuned to the GJCF website—the video should be posted soon.

Patient Day 2013

Patient Day 2013 was a little bit of awesome. Ok, it was a whole lot of awesome. When I compare my first Patient Day in 2010 to this year (I missed last year having a newborn) I was able to absorb so much more information.

In 2010 I was newly diagnosed with neuromyelitis optica (NMO) and I swear I thought I was the only one, especially in Canada! We were also newly married so as if that doesn’t come with its own challenges, my husband and I had no idea what life with NMO would really be like. I stumbled on the Guthy Jackson website and without much thought I knew I had to meet other patients. When I think about it now I can’t believe I was scared to speak to other patients, especially those I perceived as having it worse. I’m embarrassed to say it now but back then I thought by speaking to those in wheelchairs or with walkers or with visual impairments I would somehow get sicker, even though I’d experienced all that and more. In short, I wasn’t ready to admit I was one of us.

This year another patient and her husband sat at my table – it was their first time. I wondered why they were so quiet until in the evening at the bar they admitted how overwhelming it all was and I instantly recalled my first year. I’m kicking myself that I didn’t focus more on them ’cause after all, we should be there for each other. So other patient (who I won’t name here): take comfort that next year you’ll know us and although I wish we could have met for another reason, you are both part of this amazing network with nothing but endless love and support.

I love my NMO sisters Erin and Christine. They took me under their wings in 2010. For that I am grateful. I am also grateful that my best friend, Andrea, joined me this year. She has been one of my constant supporters and I love that she met the girls, the other amazing patients and we finally had our best friend trip.

Me with super mom, Nancy Reimer, who organized the very first NMO walk/run, and her son Riley.

20131115-095750.jpg

Erin Miller is obsessed with Sprinkles, the cupcake shop in Beverly Hills, so every Patient Day we make time to trek out for our bedtime snack.

 

 

 

 

 

 

 

 

 

 

Look everyone!  It’s another workaholic NMO patient! (Me with Sandra Adda.)

 

 

 

 

 

 

 

 

 

With Courtney Engel, me, Christine Ha and Erin Miller.

 

 

 

 

 

 

 

With my best friend Andrea in front of the famous Chinese Theatre.

 

 

 

 

 

 

 

 

 

 

Thanks for your donations!

Hi everyone,

Thanks for all your love and support from all over the world. Two months ago, we launched a campaign to sell #TeamChristine t-shirts to raise money to donate to the GuthyJacksonFoundation which funds NMO research. And I’m happy to say that we’ve raised over $2,000+ from those t-shirt sales. I can’t personally thank all of you enough.

As a little thank you, I wanted you to have this little video showing me personally donating the money and also thanking all of you.

And that’s it everyone! We’ve just donated $2,175 to the GuthyJacksonFoundation.org for NMO research. Thank you so much. And remember if you want to donate directly, you can go to their website at www.guthyjacksonfoundation.org.

Special thanks to Nom Nom Friends (www.nomnomfriends.com) for setting up the online store to sell the #TeamChristine shirts. Show your support by visiting their facebook page at facebook.com/nomnomfriends.

And don’t forget to check out my blog post on my recent trip to New York City (part 2).

GUEST BLOG: Purple Tramble

My name is Sharmaine “Purple” Tramble but known to many as “Purple.” Currently I reside in Seattle, Washington along with my sister. I went to school at Howard University where I received a BA in Film Production. I recently moved back to Seattle to be with my sister who has been battling a rare disease known as “NMO Neuromyelitis Optica” or “Devic’s disease” for 16 years now. I have seen her faith tested time and time again. She is now 31 and still in and out of the hospital yet we still believe that she shall live and be healed. My sis, my family and I are firm believers. She still thinks of others even in her time of despair. My passion comes from deep within because I want the world to become aware of this rare disease that has stolen years from my sister’s life. It is very painful to see her go through these moments, seconds, minutes, hours, days, weeks and years in a constant battle for her life. It really has changed me for the better and I believe that her story, her faith, her struggle has helped to encourage the lives of all those she has come in contact with. Every hospital, every nurse, every doctor and even other patient’s visitors have all said that they love her. The simple things are all we all want after all… to be comfortable… that is all that we are working for… time to spend just doing simple things. I cherish every moment spent with my sister because I understand that is what I live for. It is an honor to be there for her and to make sure that she is comfortable because I know that she would do the same for me. That’s what sister’s are for.

She was diagnosed when she was 15 years old with Multiple Sclerosis but a year or two ago the doctors found that it was not MS but NMO that was attacking her body. My sister, my family and I are both very happy to venture on this journey to fight for the cure for this rare disease. Please be advised that our journey is not one that is accepting of the prognosis from the doctors but we believe as we go forth in faith, healing not only for my sister but for many others will manifest.

I recently became an Official NMO Advocate joining with The Guthy-Jackson Foundation’s fight for the cure. Neuromyelitis Optica is said to be very similar to MS (Multiple Sclerosis), which has led to numerous misdiagnosis. This was the case for my sister as well. Through this experience my sister and my family’s faith has been tested and tried.

Daughter of Michael and Robin Tramble who are believers and musicians, my sister is also a vocalist and has been singing since she was 5 years old. My prayer is that one day she will be able to sing again. Her story is one of many but ONE that with the help of many will be heard. Caring for my sister has inspired me to start non-profit – Purple Hearts – which focuses on providing education to the community, nation and the world about NMO (Neuromyelitis Optica), MS (Multiple Sclerosis), Autism and Mental Illness. Together along with my video production company “Purple Reels Productions” soon the community, nation and the world will know my sister’s story.

Valuable Links

http://www.huffingtonpost.com/ali-guthy/neuromyelitis-optica_b_1952866.html

An excerpt from Ali Guthy and Victoria Jackson’s new book.

http://ectrims2012.eventresult.com/default/index

The European MS conference with an entire session on NMO.

https://conferencecenter.msworld.org/ectrims-2012/day-three/neuromyelitis-optica

MS World.org conference discussing NMO and how Zrytec, the over the counter allergy med, might help.

Image

HAPPY RARE DISEASE DAY!


Yes, I’d like to think it is a happy day because we’ve all made it one more year.  Living with Neuromyelitis Optica (NMO) can be a real pain so I’m very proud of each and everyone of you in our NMO family for continuing to fight forward and fight together.

This is also NMODiaries 1 year anniversary.  A year ago, Christine, Erin and I started NMODiaries almost as a therapeutic tool.  NMODiaries is place where we motivate each other, have a place to showcase our stories to our family and friends so they better understand our day to day lives and often, a place where we take a moment to laugh at ourselves.  By sharing our lives, we were completely surprised by how many other patients reached out to us to tell us their stories – in an attempt to inspire each other, we were inspired by you.  So, thank you for sharing your lives with us too.

Therefore, in honour of our 1 year anniversary and Rare Disease Day, we asked you, “What was your greatest accomplishment this year?”

 

 

 

“Had twins!  My boys are not just my year’s accomplishment but my life’s.” – Elizabeth Goble Brammer

 

 

 

“Although I’m in a wheelchair 90 percent, I was able to Zipline (9 lines) in Hawaii last February.” – Joni Ignacio Matthews

 

“I’ve been smoking for over 30 years and had been trying to quit for the last 3. I made myself a promise that I would be smoke free before the Guthy Jackson Patient Day last November and I was able to do it. ” – Lynn Copeland

 

 

 

“My husband reminded me that I did get my motorcycle license, and bought a bike. And, I over came my fear of heights, and went zip lining. ” – Paula Dean-Luce

 

 

 

“I got hand controls installed in my van and got my independence back!” – Tracy Owens

 

 

 

These are just a few of the great responses we received.  For more inspiration, check out the Devic’s Disease group or the My Devic’s Family group on Facebook.

Patient Day 2011

THANK YOU THANK YOU THANK YOU to the Guthy-Jackson Charitable Foundation for arranging yet another successful Patient Day.  Thank you so much for having us and always being in our corner.  Patient Day was a great chance to re-educate and receive new information on Neuromyelitis Optica (NMO).  More than ever, I’m confident that they’ll find a cure one day.  Some exciting stuff I gathered from the event:

  • An aquaporin map treatment is in the works to creat good antibodies.  A paper was recently released by Dr. Alan Verkman.
  • Talk to your doctors about the flu shot but in general, the benefits usually outweigh the risks for NMO patients.
  • Be more active and wash your hands!
  • Remember to get regular check ups like the rest of the population (ie. Melanoma could be a side effect of long term use of Cellcept).
My favourite break out session was definitely the Nutrition and Diet.  Led by John Pierre (who is Ellen Degeneres nutrition guru), he made a very effective argument towards a plant based diet.  Having tried a vegetarian lifestyle for a couple of months this year, I did see results and did feel much better.  I came home energized to try it again and so far in the last couple of days I’ve lost a few pounds and have regained some of my energy.  Although, I did try his gluten free, sugar free blueberry muffin recipe and I’m honestly not a huge fan.

Here are a few highlights from our trip:

 

Jenna

Consortium for MS Centers

I was thrilled to be invited by The Guthy-Jackson Charitable Foundation to help out at the Consortium for MS Centers this year.  The Consortium, which was celebrating their 25th anniversary, was held in Montreal, Canada.  My task: attend the conference, work the trade booth, and create awareness about NMO (NeuroMyelitis Optica).  A quick 40 minute flight from Toronto, this was a rewarding experience.

2 worthwhile things I learned:

  • I met a Physical Therapist who worked with an NMO patient suffering from frequent and crippling spasms (I remember them – they were horrible!).  Their treatment plan consisted of Botox injections into the heels of feet to interrupt the signals triggering the spasms.
  • “Patient Activation” was a term a MS patient used when she described managing her disease.  We aren’t always motivated to do something, like workout, but if we just do it (patient activation) we’ll find that within a few moments of the activity we find the motivation and can accomplish the task.