8 years living with NMO

June 23rd marks my 8th year being diagnosed with NMO. It’s a bitter sweet day to reflect on as I remember how much my life changed within a week. I remember so clearly; I was working at my family’s hotel in Frisco and I was riding the elevator down to the lobby when all of a sudden I couldn’t control my left arm. I walked into my husband’s office since he was the general manager. He looked at me and asked what the heck is wrong with me and to stop waving my arm around. I said something is not right and I need to get to the hospital. Within hours I was diagnosed with Transverse Myelitis, which they thought would likely be my only attack. They suggested that I should be fine after my 5 days of steroids in the hospital.

Almost 1 month later I had another attack where this time my whole body started shaking uncontrollably and I started to go paralyzed on my left side. This time we drove down to Denver and I was admitted to the hospital for 5 days again for IV steroids. They did another MRI and they changed my diagnoses to relapsing remitting MS. I didn’t know what to think when they told me I had MS but I focused on finding a neurologist to start MS medication right away. What a whirl wind experience I had to find a doctor and to start educating myself about MS and all the different medications I had to take. At one point I was taking 15 different pills, which did not include my MS medication that I had to inject into myself everyday.

In August again 1 month after my second attack I started to go blind in my left eye and the doctors did not understand why I was having such horrible attacks since I was on MS medication. My neurologist was second guessing I had MS so I was admitted again to the hospital for 5 days of IV steroids. My doctor recommended I go to the Mayo Clinic and get a second opinion as he thought I had Neuromyelitis Optica. When my doctor told me that I might have NMO he looked at Eric and I and said I would have a better chance winning of the powerball then being diagnosed with NMO. Well within a month I went to the Mayo Clinic and the doctor there agreed I had NMO. Now my life was going to change even more they originally told me. I needed to start taking Rituxan right away and the doctors could not guarantee I would get my vision back in my left eye.

Looking back all I went through and how much my life changed after being diagnosed with NMO it’s been bitter sweet. At one point through my journey I thought I would never be able to have kids and I would never see out of my left eye and I would never recover being paralyzed on my left side. I beat all those things; I have two adorable children, my left eye I can see out of, and for my left side it’s just more weaker then my right. I am very thankful I have seen some wonderful doctors that helped my dream of having kids come true. I have also met some incredible people because of having NMO and I wouldn’t have met them if it wasn’t for NMO.

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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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.

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.

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.

A Rare Gathering

Patient Day LA 2015

Patient Day LA 2015 Photo Credit: The Guthy-Jackson Foundation

One week till NMO patient Day in LA! Someone recently asked what we get out of going. My answer was that it’s an opportunity to hear firsthand about new developments in research and treatments. Last year we were able to learn about three (!!) clinical trials that were being launched. Each of the pharmaceutical companies involved sent a representative to give us a detailed explanation of how their clinic trial would work. We were able to ask questions and to gain a greater understanding about the science behind each drug trial.

We also have the opportunity to meet others who live with the same disease as we do. When you are dealing with something as rare as NMO, just being able to trade stories about our personal experiences with others who “get it” is really meaningful. Years ago, as a crisis line counsellor, I took some advanced training on grief. One of the things that I learned was that every time you tell your story, you heal a small part of it. Living with a disease as serious as NMO is, we find ourselves constantly having to grieve some aspect of our life-an ongoing loss of health (vision, mobility, etc) a loss of a job, the strain it can put on our relationships, and so on. I think there is a measure of healing to be had when we gather together, whether we recognize it or not. Those connections are so important.

When we gather together, it is, (for lack of a better description) a way to shore up our souls. It gives us great hope to know that we have the passion of the Guthy-Jackson Foundation leading a powerful and inspired community of researchers and clinicians who are partnering with NMO patients to seek out better treatments and ultimately to unravel the mystery that is NMO so we can cure it. That hope lives and breathes in that conference room. When we go home, we carry it with us and that my friends, is priceless.

22
Feb 2016
POSTED BY Lelainia Lloyd
DISCUSSION 1 Comment
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Snowboarding in Whistler

We’ve just returned from what has now become our annual ski trip to Whistler, British Columbia and it was, wait for it…awesome! After years of on again off again learning I finally feel confident enough to call myself a snowboarder. Making such a bold statement is a big deal because for once I’m actually proud of myself.

I’m a snowboarder with NMO.

Neuromyelitis optica has robbed me of so much but it hasn’t taken away my spirit for adventure. Finally comfortable enough to complete blue runs in Whistler, I rarely fell on the mountains. Swooshing down at a max speed of 42 km/hr (there’s an app for that) I completed several hours each day, for 5 straight days in a row.

In your face NMO!

I will confess though; this was the most I’ve pushed myself physically since my major attacks. And yes, it hurt, a lot. On every run my back screamed in pain and my legs tingled till they went numb. I knew it was time to take a break when my body wouldn’t complete anymore turns. It usually resulted in a fall from exhaustion/pain. So why do it? Because the sense of accomplishment and adrenaline is my new drug. It easily outweighs any amount of pain or fear of heights. The ongoing pep talk in my head is an exercise in will power. It is how I have always planned to live with NMO.

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Me boarding one of the back bowls on what was quite a foggy day. The run is called “Burnt Stew Trail”.

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Me, stuck in powder snow. I am laughing hysterically because it was like falling into a cloud.

 

Now, I’ll never be an Olympic snowboarder, but my kid might be.

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Sophie, 3 years old. Having completed a week of ski school.

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Family photo, Whistler, British Columbia, 2016.