Patient Day 2016

Guthy Jackson NMO Patient day is always a special day for me. It’s the one-day a year I get to connect with my NMO family. This year marked my 5th time attending this special day, this year I brought my mom. I wanted her to meet my NMO family and some of the doctors that I have talked with. Every year at Patient day Ms. Jackson does a fabulous job putting on this event for patients. It is such a great opportunity for patients to connect with each other and talk to some of the top NMO doctors. It is so nice to talk to another person that has NMO and talk about what you are feeling and they completely understand. This event is so special Ms. Jackson has doctors all over the world to come talk to us patients about whatever questions we might have. Also patients get to find out what’s happening new in the medical world of NMO.

The big topic this year was researchers talking to us patients about trying medical trials for new drugs for NMO. It was very interesting and there were some good points made about this topic. If you are interested to learn more about the clinical trials please visit the Guthy Jackson website there are some great resources there. The also had several breakout sessions this year from asking the Docs, nutrition, mediation, navigating insurance, managing pain and simplifying the science of NMO. It is a day where you can learn as much as you can about having NMO or being a caregiver for a NMO patient.

The other big thing is donating the blood to the Circles program that hopefully helps a cure for NMO. I strongly encourage you to do this if you are a NMO patient and your family. We all have a piece in this very large puzzle and we need to work together to help find the cure.

When the conference is all over with the patients gather around and have dinner and just talk to each other and have a good time. We are all like one big family and we really enjoy spending time with each other and like I said this is a one-day thing we get to bond like this. Its hard to say goodbye at the end of the night to each other. But we know in 364 more days we will be reunited together again.

http://guthyjacksonfoundation.org

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Guest Blogger Heather Sowalla NMO and Teens

A few weeks ago, thanks to the Guthy Jackson Charitable Foundation, I was able to attend the 2016 NMO Patient Day in Los Angeles. And, unlike in other years this year I had a purpose. I was to lead a support group meeting for teens and young adults with NMO the day before the conference. I have to admit, I was a bit nervous. I’ve always been good at public speaking and leading discussions, but this was going to be a completely different situation than my norm.

To be honest, even in the world of NMO, I think people often forget about the teens that suffer from NMO. We hear the stories about children and our older adults, but we don’t hear much from the teen age groups. Where do they fit in? They aren’t really adults yet and they aren’t little kids, so we’re faced with the dilemma of where they fit into the NMO community. They are old enough to understand what the doctors are doing to them and why. It’s because of this reason that I was approached at the 2015 NMO Patient Day, to create a place where the teens and young adults can talk freely about their issues, and I have been moderating that group since then.

This year, for the 2016 NMO  Patient Day, I was approached about running a support group for the teens the afternoon before the conference, and truly I feel it made a difference. A group of around eight people were able to come together to talk about NMO. I wish it were under different circumstances that this amazing group of individuals got to meet, but we were able to come together and it was amazing. Some of the teens in attendance had never met another person with NMO before, let alone another teen. So, during a time when they feel sick instead of feeling alone they can fall back on that first meeting and how even if life is no longer in our control that we can find methods of coping, which we discussed in the meeting.

The largest issue all of my teens agree on is how they can or cannot maintain an active normal teenage life on top of trying to control their NMO and symptom management. Teens are emotional. They don’t necessarily have the life experience that adults have, and it can cause their emotions to get mixed up and they can easily become frustrated and angry. That is something I am proud of, of my support group members. They were there. They were aware. They wanted to ask questions and get answers. Having NMO is difficult enough without the added stress of friends, dating, driving, school, etc.

Something we discussed was relationships. With family, friends, and significant others. It came across that most of the teens in the group feel as though they are isolated and that no one understands them, and that nobody gets what it’s like to spend days, weeks, or even months in the hospital and it can get depressing. But, there is always that one friend, the one that brings you chocolate and chips and sneaks soda into the room.

I’m glad to say that bringing these amazing teens together has allowed them to create a bond they may not have otherwise. No longer are they fighting their battle alone. Together, standing tall, they speak out about NMO and fight to find a cure.

We have a few things being prepared for this group of amazing young individuals. Between the online support group I am working with the Guthy Jackson Charitable Foundation to put together a teleconference so the teens can have the opportunity to talk over the phone with one another about life’s events, NMO, and how they are or aren’t coping. It’s an amazing way to bring them together and start a dialogue that in recent years we didn’t have available for our younger NMO community members.

Things Only NMO Patients Will Get

I missed this year’s NMO patient day but absolutely loved seeing all the posts and photos of past and new attendees connecting with each other. It’s what has inspired this week’s post that only NMO patients might appreciate.

1. (Upon seeing you in person) “I’m so glad you’re feeling better”
NMO patients always sympathize with the inevitable prednisone use, which causes weight gain including the dreaded “moon face”. Those who aren’t familiar might assume the weight loss or return to normal weight means you’re healed from the disease, but that’s just not the case. Prednisone is used to treat flare ups or as a precautionary measure.

2. “But you were walking yesterday. What’s wrong with you today?”
NMO symptoms can flare up and cause different mobility from day to day or even from hour to hour. This is tough for others to understand who don’t realize how symptoms work.

3. Having to cancel on your friends and family…again
This is related to #2 and the unpredictable nature of NMO. If you’re like me, you’ve probably had to make excuses that seem easier to understand like “my kid is sick” or “I’m stuck working late”. It can be heartbreaking for patients when the invitations stop coming because they assume you’ll probably have to cancel anyways.

4. The stubbed toe syndrome
Right now 3 of my 10 toes are badly bruised. That’s because my mobility gets thrown off, I walk into things because of the numbness and vertigo is sometimes a problem.

5. Healthcare is expensive
Even if you have extended health coverage, having a medical condition is very expensive. The medication alone can cost a fortune and that’s before any additional maintenance care like massage therapy, acupuncture or doctor appointments. And most patients can only work limited hours or survive on disability earnings.

6. We know how to navigate the medical system
This is a broad statement that might include best time to call for an MRI, the nicest nurse for blood work or even best time to pick up a prescription from the pharmacy. Most of us are even on a first name basis with our neurologist!

7. Food is our friend (and our enemy)
Eat what makes you feel good but that usually means really restrictive diets. Eating with others fuels our sense of belonging but people can get weird about our food limitations.

Happy Birthday Allen

Happy 3rd Birthday Allen! I can’t believe three years have gone by already. I feel so blessed that I am his mother. Every year around his birthday I can’t help myself to reflect on the journey Eric and I went on to have him. I remember when I was first diagnosed I just cried cause we didn’t know for sure if I could have kids and if I would pass NMO on to them. After seeing some pretty incredible doctors they assured me I could get pregnant and there was a very small chance I could pass NMO onto my children. I am just so happy and blessed Allen is a healthy boy!

 

Allen is quite the character and really building up his personality. I have really seen him grow up this last year. I love how much he can talk now and the stuff he comes up with can always make Eric and I get a good laugh. He is 100% boy; He loves his cars, tractors and trains. His favorite thing to do is tell me he is a racecar and makes racing noises as he runs through the house. Allen is almost 100% potty trained we have been working with him for a month now and he is getting pretty darn good at it. Allen also got a new room and bunk beds this last month. He was pretty excited since I decorated his room in cars for him. He now calls his old room the baby’s room. Allen kind of knows there is a baby coming soon. If you ask him where the baby is he points to my tummy. I know he will be a great big Brother!

 

Help Take NMO to the Next Level: Complete This Clinical Trial Survey

I always reminisce about how the Guthy Jackson Charitable Foundation’s 2010 NMO Patient Day was the catalyst for the birth of NMO Diaries. That’s why I have a soft spot for GJCF and its mission to better the lives of those affected with Neuromyelitis Optica/NMO through advancement of therapies and search for a cure.

The latest project at GJCF is a clinical trial survey that will bring together people living with and blood-related to those with NMO into a pool of possible clinical trial candidates. Filling out the survey doesn’t automatically enroll you in a clinical trial; rather, it helps measure your knowledge of and willingness to participate in clinical trials.

I, myself, have enrolled in a few clinical trials before, and yes, it takes time and resources, but I participated because I have hope for the future generation that NMO can one day be a thing of the past, like polio! Whenever I have the time and qualifications, I make an effort to contribute whatever I can to better the lives of everyone affected by NMO, including myself.

Even if you aren’t sure, I encourage you to complete the GJCF clinical trial survey and be part of a movement to improve our lives.

Introducing our new blogger – Lelainia Lloyd

Several years ago Mike (my then fiancé) and I found ourselves at the Guthy-Jackson Foundation Patient Day. After asking a question, Erin found me on one of the breaks because she had a similar question. We started talking and also met Christine in the lobby bar. Before soon, the 6 of us (spouses and us) found ourselves at a sushi dinner. Call it fate or by chance, but NMO Diaries was born over that shared meal.

This blog was a form of therapy for each of us but also a way to give back to the NMO community. You see, several years ago, if one were to Google neuromyelitis optica, it offered a frightening tale that our lives would be over. Determined to not have this disease defeat us, we wanted to share our lives and how we planned to move forward.

Fast forward to today, I’m very proud to say that each of our lives has developed further than any of us would have imagined. There’s so much more each of us wants to do and now we see it as a possibility because of the love and support we’ve received from the NMO community, our families and our friends.

That being said, it’s time for us to include a new blogger to join us permanently on NMO Diaries. I’m very pleased to introduce each and every one of you to Lelainia Lloyd. Based in British Columbia, Canada, Lelainia is just a few years older than us, is very involved with the MS Society and will offer her experiences as a new perspective. To learn more about Lelainia’s NMO journey check out her “About Us” link here.

Thanks for joining us on NMO Diaries. We hope we continue to inspire and motivate each other to live life to its fullest.

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.

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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.