Support the second annual Dining for NMO, raise funds for NMO rsearch

Last October was the first ever Dining for NMO Day during which restaurants donate a portion of their proceeds to the Guthy Jackson Foundation for NMO research. This year, the second Dining for NMO day will be held Monday, October 17th.

Watch this video and visit the Dining for NMO site to learn how to support the cause. Together, we can find a cure.
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17
May 2016
POSTED BY Christine
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Accidental Event Planner

Thank you to the lovely ladies of NMO Diaries for asking me to guest blog about our 5km Walk/Run which takes place on Sunday June 19 at Rocky Point Park in Port Moody, British Columbia, CANADA.

As we enter year 4…yes that’s right…year 4 and as I sit down to type this out now, I find myself reflecting a lot on why this event even exists. The short answer to that is that this event exists because my son, Riley, was diagnosed with Neuromyelitis Optica (NMO) on November 23, 2011.

I recently happened upon the following quote and really, it describes perfectly why I do what I do for my child.

MY PROMISE TO YOU:

To fight for you

To protect you

To be your voice

To always love you.

 

Pretty simple right? As parents, this is basically our job, but throw in a diagnosis that you have no control over and these words take on a whole new meaning. Early on in Riley’s diagnosis, I learned that I had no control over what was happening to him and that no matter how hard I prayed and pleaded, NMO was not something that I could take away from Riley and transfer to myself. I must admit, that has been, and continues to be, the hardest part of this journey….I cannot take it away and I cannot transfer it to myself!!!! What I have discovered, however, is that I CAN fight, I CAN protect, I CAN be his voice, and I CAN love!!!!

Once I figured that out, I thought about what I could do to fight this monster that had grasped my child so tightly. Those who traveled with us for that part of the journey, will remember the seemingly endless violent relapses and the happy homecomings and then another relapse. This repeated itself over and over in that first year, and as I type this now, I stop over and over to collect myself as the waves of memories from that horrible time almost suffocate me. As I catch my breath, I can only think “Thank God that right here, right now, we are no longer there”, and yet during those times it seemed like it would never ever end. (you can read a glimpse of the story at www.nomorenmo.com ). In those days, I was a runner and found very quickly that running allowed me to process and to grieve as I pounded my feet into the earth. It became for me, my therapy, and I am grateful to have had the strength and the endurance to be able to run and work through this very difficult part of our NMO journey. It was during one of those runs that the thought came to me to have a run specific to NMO. I visualized a sea of green and what a blessing it has been to see that become a reality. When I founded the First Ever 5km Walk/Run for Neuromyelitis Optica (NMO) in 2013, I had no training in event planning. It was then, and continues to be, frustrating at times, but then I remember my promise…to fight, to protect, to be his voice and to love. This event is my promise come to life in battling the monster that lives in my child. It has become so very much more than that now. In times of grief and desperation, we find comfort in those who just “know” exactly what we are feeling. Early in Riley’s diagnosis, I sought out support. I was searching for people who understood what I was going through and that search produced so much more than I could have ever imagined. What I found was a family…a group of people that opened their arms and their hearts and invited me in. At the very lowest times, they have been the arms that have surrounded me and at the highest moments, they have rejoiced and celebrated loudly with us. I have been blessed so far beyond what I ever imagined and I struggle to find a word big enough, loud enough, to express my gratitude for this incredible group of people that never would have been a part of my life had NMO never entered our world. So you see, an event that was started because one little boy received a diagnosis, now continues because that monster has grabbed ahold of too many people that I love. To each of you who battles this disease, I extend my promise also to you. I will fight for you, I will protect you, I will be your voice and I will always love you.

As we prepare for year 4, there are many emotions, and over the years, I have started to see a pattern in that. At this moment today, I am wondering what our sea of green will look like this year. Our registration, although off to a good start, is very slow moving right now. Those who know me well, know that causes much panic in me. I celebrate every registration as it comes in and with each name I see, I hear the words, “I’ve got your back”. I always think back to the movie, Field of Dreams and the line “if you build it, they will come.” I think okay…”if you plan it, they will come”, which totally makes sense because there is no way the people in our lives would leave us standing alone!!! Last year, we had 16 people with the diagnosis of NMO on our race site and what a blessing it was, and will continue to be, to provide a place for these amazing people where they can feel loved and supported while we work towards our common goal of a CURE! Who wouldn’t want to be a part of such an amazing experience!!!! We have made it so easy for anyone, anywhere, to be a part of this event. If you are unable to be there in person, we have a virtual participant option which just lets you say, “we can’t be there physically, but we CAN fight this with you.” Each year, I write the names of all of our virtual participants on my race shirt so that I bring you with me onto the race site.

So there you have it! Never in my wildest dreams or plans did I ever even think that I would found an event or become a rare disease Advocate, but each year, each speaking engagement, confirms that I am exactly where I am supposed to be at this moment, on this journey. It is a wild, emotional, scary, never ending ride, but it has been filled to overflowing with blessings and has taken me places that I never ever imagined I would go. Thank you to the amazing people in my life, who even when this journey has been at its most treacherous, buckled up their seatbelts, and stayed by our side.

 

Would you like to register for our event? Please do so here:   https://www.raceonline.ca/events/details/?id=1186

 

Would you like to donate to our team/event? Please do so here: Team Reimer pledge page: http://pledge.at/teamreimer or General donations: http://pledge.at/nmo

 

Would you like to see what all the hype is about, watch highlights from our last 3 years here: https://animoto.com/play/hHjb2xjvnYgUtFQeSek2ZQ

 

Please join us, in whatever capacity you are able, in making a difference in the lives of those who live daily with NMO. Every dollar donated and every step taken brings us closer to a CURE!!! #BecauseItMatters

 

10
May 2016
POSTED BY Erin
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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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Let’s Talk About Clinical Trials

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This year’s Guthy-Jackson NMO Patient Day in LA focussed on clinical trials. In the last year or so, there have been THREE clinical trials for NMO launched. In the world of rare disease, this is HUGE! It means there are drug companies out there that are willing to spend the time and money necessary to explore the possibility of new medications to prevent, treat and cure NMO. It’s a giant step forward for an orphan disease and it would not be possible without the hard work of everyone at the Guthy-Jackson Foundation.

So what does that mean, really? To put it simply, it means that we as patients need to step up. The clinical trials mean absolutely nothing unless NMO patients enrol. Because we are rare, the pool of possible trial subjects is already limited. If you add to that the possibility of some candidates being excluded for various medical reasons (there is strict medical criteria that must be met by each potential subject, for safety reasons) that further limits the number of patients who can participate. In order for a clinical trial to be viable, there are a minimum number of participants that must be met to make the results statistically significant. Without our participation, it is impossible for the medical science around NMO to move forward.

Having more treatment options for NMO is important. All of the current treatments for NMO are using drugs developed to treat other diseases. This means that while they might be helpful in the treatment of NMO, they are not specific to NMO and many of us fail on these drugs-we continue to have attacks and/or experience serious side effects which lead to us being unable to continue taking them. Having options is essential, which is why participating in clinical trials is imperative.

Last November, I attended NMO Patient Day at UBC and had the opportunity to get information about the clinical trials. I went over the information I received a number of times, I thought about it, I did my homework by digging up even more information online and I talked to people I trusted about it. When I was at LA for Patient Day in March, I had the opportunity to ask the experts more questions. After much consideration, I chose to screen for one of the trials. It was not a decision I came to lightly, but it was the right one for me.

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The pile of paperwork.

Right after I got home from LA Patient Day, I was scheduled for my first screening appointment. I met with the clinical trials team from UBC to fill out the paper work which included a medical history and signing the informed consent and then I had a number of tests to complete.

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Monica, the lab tech.

 

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All those vials are mine!

There was a blood draw which made me laugh when Monica, the lab tech emptied a box of vials onto the counter. I did a quick count and discovered there were FORTY in total! Vampires! Fortunately many of the vials were small and used to break up the sample into smaller quantities, so I didn’t actually have to be siphoned! There was also a TB test so blood was put on a glass slide. It only took a couple of minutes and was pretty painless. Monica was super nice, so I really didn’t mind.

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ECG

I had a physical with the neurologist who oversees the clinical trials which took about 20 minutes. Nothing exciting to report there-he listened to my heart, took my blood pressure and temperature and all the standard stuff. After that, I went across the hospital to have an EKG done. I walked those results back to the clinic and was free to go home. Part one of screening was done.

About a week went by and my blood results were in. I got a call from the clinical trials team telling me that one component of my blood work was not up to snuff and that they had been granted an extension of my screening time so that I could redo that part of the blood work and see if it improved. On my second screening visit, Monica redrew my blood and then I had a neurological exam by one of the neurology fellows. This was to determine my EDSS score. (Expanded Disability Status Scale which is the assessments of functional systems: Pyramidal (motor functions like walking), Cerebellar (coordination), Brain stem (speech and swallowing), Sensory (touch, vibration and pain), Bowel and bladder functions, Visual, Mental.)

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The MRI clinic at UBC.

From there, I went over to the hospital and had a head to tailbone 3 hour MRI with contrast. I am NOT a fan of MRIs, but the techs that were running it, Laura and Alex were so incredibly patient-focussed that for the first time ever, it was not a horrible experience. When it was over, I actually said “Thank you for making that not suck!” I was almost in tears and asked Laura if I could give her a hug. What made it so different from all the other MRIs I’ve had over the years is that they talked me through the entire thing. They would tell me how long a sequence was, whether the table was going to shift or not and in which direction, if the machine was going to vibrate and they would constantly be asking if I was okay and telling me I was doing a good job. Believe me that went a long way towards making me feel calm and cared for. They seriously need to be training other MRI techs how it’s done. Laura and Alex are exceptional at their job.

I still needed to have a neuro-opthomology assessment, but that was being scheduled after the second round of blood work came back. About a week later, I got an email from the clinical trials team saying that I had been excluded from the trial, by the slimmest of margins. In all honesty, I was stunned and frustrated that after all that, one tiny little thing meant I could not participate. I think for me, the hardest part of it was that some nameless, faceless stranger in another country got to make a decision about my health for me and there was absolutely nothing I could do about it. It’s taken a few weeks for me to digest that. I do want to say that the clinic trials team at UBC was excellent. I felt that throughout the entire process, they were kind, respectful and considerate. They were always willing to address any questions or concerns I had and did an exceptional job of communicating along the way. I have nothing but respect for the job they are doing. I know it’s not easy.

So would I do it all again, if I got a do-over? The simple answer is YES. I know how important clinical trials are and what it could mean to not just my life, but the lives of everyone living with NMO. At the LA Patient Day I heard so many people say that they were failing on their treatments or had run out of treatment options. This is not okay. This is life and death we’re dealing with here.  I want us to have options for treatment. I know we have the best and brightest minds working tirelessly to unravel the mystery that is NMO and because of that, I do not hope for a cure-I EXPECT one. In the meantime, I believe we need treatments that will help us maintain or improve our quality of life and the only way we are going to get them is by participating in clinical trials.

Here’s a video from LA Patient Day that explains how clinical trials affect us as NMO patients.

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My 6th blood draw for CIRCLES.

That said, obviously I know that not everyone can or should participate in clinical trials. If you can’t, for whatever reason, you still have the power to make a difference: sign up for research studies. The CIRCLES study is an excellent way to partner with NMO scientists all over the world. It’s a simple blood draw any time you are able to connect with your collection site. Mine is at UBC, where I see my neurologist, so any time I am booking an appointment, I make sure it will coordinate with having blood drawn for the study. At my clinic CIRCLES blood can only be drawn Monday through Thursday prior to noon, in order for it to be shipped to the biorepository in the US. I book my appointments specifically to accommodate this schedule. Sometimes I am out at UBC for other reasons and I will email the CIRCLES team and say “Hey, I’m on campus this week. Would you like some blood?” They always say yes. It’s never more than 20 minutes of my time and it’s that simple.

There is an excellent video from LA Patient Day about Your BioBank at Work that explains how the blood from CIRCLES is used and the difference it makes. It’s worth watching.

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Back to the MRI clinic!

I have also taken part in other types of studies. The most recent one was an NMO and cognition study that involved doing some simple game-like tests for the first part and then an hour brain MRI for the second part. I had the brain MRI about 2 weeks ago and had the same fabulous techs, Laura and Alex who did my clinical trial screening MRI. After my initial experience with them, I trusted them completely and for the first time ever, had ZERO anxiety having the MRI done. That was amazing! When it was all done, Alex handed me a disc with my MRI on it. I was both surprised and pleased. My UBC Health Mentor students will enjoy seeing it. It was a lovely thing for him to do. You get what you give!

All NMO research is important. The information gathered helps researchers and clinicians piece together a better understanding of this disease and its effects. It just takes one small thing to unlock the mystery and find the cure and we can all be a part of that process. I encourage you to consider participating in whatever way you feel comfortable. We have the power to help end this terrible disease. Together, let’s say YES to cure NMO!

 

To learn more about NMO Clinic trials, please visit the Guthy-Jackson Foundation Clinical Trials FAQ page.

25
Apr 2016
POSTED BY Lelainia Lloyd
DISCUSSION 6 Comments
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What it’s like to get IVSM treatment

I do not cry wolf. In fact, I’m the type who will try to fight the wolf alone then only when it has half eaten my arm will I contemplate if perhaps I should have asked for help. That is how I am with this disease. Stubborn, relentless and unapologetic about it. It’s not the best strategy but it works for me.

2 weeks ago I had to finally admit defeat when I found myself in the ER and was prescribed 3 days of IVSM (intravenous solumedrol). Truthfully I’d been struggling for weeks before, noticing fatigue, weakness and then excruciating back pain. I first visited my family doctor, desperately hoping it was all in my head, but the moment he saw me he calmly said, “I think this time we can’t ride this out.” It was upsetting because I’ve been holding stable for several years now. In a lot of ways, I’ve been carrying on like the disease doesn’t exist in my life. I felt defeated, overwhelmed and angry. When I finally made my way to the ER it was dirtier and sicker than I remembered. I was uncomfortable with the fuss everyone made. My first dose was administered in the ER and then I was sent home, where a home care nurse would visit and administer the 2nd and 3rd doses. I managed that 1st dose alright. It instantly made me feel sick but it also started to relieve the back pain. And then this is where I really struggled.

I had to take a forced break from work. In my head I was trying to tough it out and carry on but my body just gave up. I barely remember the days that followed, living in my bed with my supportive husband raising our daughter alone and bringing me meals. I refused to tell friends and family my condition. Some found out and each time I felt like I let them down.

My daughter is almost 4 now. She’s intuitive and knew “Mommy is really sick”. She spilled the dirt to everyone she ran into, obviously really concerned. The home nurse had to put in the IV. I didn’t want her to worry so I let her watch and made it very matter of fact. I hate needles and hate IVs more but as a parent my first concern is how she feels. The moment tested my strength because I didn’t want her to see how tough this really was. Afterwards we wore matching mesh armbands, mine to cover the IV plug, hers as a fashion statement.

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I’m not at 100% yet but I’m doing my best to pretend I am. Last week I returned to the hospital for a 2.5 hour MRI. This disease has so many ugly moments and for me this was one of those. I tell myself that unfortunately not every day can be a good day but instead I’m focusing on those things I’m so grateful for – my family, the medical care, and that it’s been a decent run between flares.

Acceptance, Awareness, Advocacy

Christine delivers lecture, Syracuse

Christine delivers the commemorative lecture for Asian-American & Pacific Islander Heritage Month at Syracuse University

This month, I’ve been and will be doing a couple of talks at universities in celebration of Asian-American and Pacific Islander Heritage Month. I’m constantly reminded of how I’ve been given this platform to advocate and raise awareness for those often socially marginalized—particularly women, Asian-Americans, the vision impaired, and the disabled. Winning “MasterChef” was cool, but I’m well aware of the bigger picture. Like Spiderman, “With great power comes great responsibility.”

Even the books I’m reading—A Spool of Blue Thread by Anne Tyler and The Light of the World by Elizabeth Alexander—touch upon the “other”: the elderly and adopted, in the case of the former, and the grieving and diasporist, as in the latter. Literature exists to help us understand others who are not like us; like food and the arts, it serves a connective purpose, exposing the universality of humankind, however frayed.

I think about this phenomenon often—the coexistence of both the celebrated differences yet commonality we all have as humans—and it makes certain things that much more important.

Because I was an only child and lost my mother when I was fourteen, I learned to be independent from an early age. When I was diagnosed with Neuromyelitis Optica/NMO when I was in my mid-twenties and lost my vision, it was very difficult for me to accept the fact that I could no longer drive my own car and shop for my own groceries. My independence was the casualty of my NMO, and it took a long time—probably five years or so—for the final acceptance of my diagnosis.

When I was first diagnosed with NMO twelve years ago, it was still called Devic’s disease, and the only resources I could find online were one-pagers from the University of California, San Francisco, and a practice in the United Kingdom. That’s it. There was no Guthy Jackson Foundation, no NMO support groups, no NMO Diaries blog.

It became not just a desire, but a necessity, to raise awareness about NMO. I was tired of everything assuming I had multiple sclerosis or, better yet, scoliosis. It bothered me that nobody knew what NMO was, including medical staff I came across at various hospitals and clinics. I’m okay with NMO being considered a rare disease, but I did not like that it was an orphan disease.

My blog, The Blind Cook, was started in part because I wanted to raise awareness about NMO. In fact, my very first post for the blog on July 23, 2010, was entitled “Living with NMO” and discussed my new treatment plan. I’ve spoken about NMO at all my keynotes, and I’ve helped out with various GJCF fundraisers and events.

I believe we all have at least one thing we’re passionate about, and our purpose in life is to be an advocate for such things. I care about the literary arts, the culinary arts, the blind community, the disadvantaged, physical and mental health, my family and friends. These are the things for which I fight and bleed.

Maybe you haven’t found what you’re passionate about or what you’re meant to do in life, but I urge you to keep looking. The happiest people are those who feel they have a purpose on this earth. Once you accept, you become aware, and then you’re ready to advocate.

12
Apr 2016
POSTED BY Christine
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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.

Alana 1st Birthday

 

Alana turned 1 this last month I just can’t believe how quickly the time has gone. We call her our little Sweet Pea. For Pea’s 1st big Birthday party we went to The Denver Tea Room to have a tea party, we all dressed up in our Sunday best and had a great time. Alana was the bell of the ball she enjoyed walking around seeing everyone and waving her little hand around like a princess. She has been walking since she has been 10 months and has two teeth. Alana is getting to the point where she can almost run to keep up the Allen. She never has liked baby food she wants to eat what we are eating. I have to say she just adores Allen they way she looks at him and lights up when she sees him. She loves to wrestle with him and play cars with him. Allen some times will let her play cars but she mostly just chews on them. He gets very upset when they are covered in drool. They both definitely keep me on my toes and their is never a dull moment. My favorite things about Alana is she loves to cuddle and she is a total girl. She loves dressing up, shoes, and sparkly things. She is little for her age but has a very big personality! I am sad to see my little girl getting so big and growing up so fast. I love you very much my little sweet pea!

I am very blessed to have two healthy beautiful kids despite having NMO.

29
Mar 2016
POSTED BY Erin
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Nothing Is By Chance

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So…back in early December, I broke a tooth. In less than 24 hours, I had an infection. I happened to be out at UBC the next day for a CIRCLES blood draw and an advisory meeting, so while I was there, I popped into Urgent Care to get some help. (Which in this case was antibiotics.)

Any time I interact with health care professionals, I tend to have to give them a crash course in NMO because 99% of them have never even heard of it. In this case, it was important because I am immunosuppressed, so getting an infection was a big deal. The folks at urgent care were super nice and I was a bit stunned that in less than 10 minutes from the time I walked in the door, I was being seen.  I was in and out in less than half an hour. That never happens!

Landon, the nurse who was looking after me was really interested in learning about NMO when it came up as I was giving my medical information. I love sharing information when someone is open to learning from their patients. You know you’re in good hands when your health care providers listen to you and treat you as a partner in your care. As a patient, that level of respect is deeply appreciated. We had a good talk about NMO and I gave him my card so he could connect to NMODiaries and the Guthy-Jackson Foundation.

In mid-January, I received an email from Landon out of the blue. It turns out, he does a medical podcast about ER nursing called NursEM, which has subscribers worldwide. He next podcast was going to be on MS and he felt that it was important to talk about NMO since people with NMO are often mis-diagnosed with MS. Because NMO is so rare, he realized that it was likely someone would know his patient was me, so for confidentiality reasons, he wanted to ask my permission to talk about our paths crossing. I knew his podcast would help spread awareness for NMO, so of course I said yes.

The podcast is available in both English and French and you can download it for free here. It’s episode #14 MS/NMO. He and his co-host begin by talking about MS being Canada’s disease and about some research Dr. Traboulsee at UBC is doing. (Landon’s partner accidentally kept referring to him Dr. Traboulski which cracked me up.) Landon talks about NMO around the 18 minute mark, but it’s worth listening to the whole podcast.

If you’d like to learn a bit more about Landon, you can read about him here. I just discovered he’s a Queen Elizabeth II Diamond Jubilee medal recipient too! Small world!

You just never know whose path you are going to cross! I am grateful to have met Landon and that he chose to take what he learned from our meeting and share it with a wider audience. Someone listening to his podcast could use that information to help an NMO patient in an ER room somewhere, someday. Awareness is everything and allies are priceless.

Note: I know everyone probably expected me to post about NMO Patient Day in LA. I haven’t forgotten and will talk about it next time. Promise!
21
Mar 2016
POSTED BY Lelainia Lloyd
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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.