Allies & Advocates: Partnering for NMO

I am always eager for the opportunity to advocate and raise awareness for this rare disease I live with, so when I was contacted by the Canadian MS Society in mid-April, asking if I would be interested in speaking to a pharmaceutical company about living with NMO of course I said yes.

I prepared a powerpoint presentation to share. I was glad for all the selfies I’ve taken of various health care experiences I’ve had-screening for clinical trials, having plasma exchange (PLEX), infusions of biologics and so on. It allowed me to visually underscore the kinds of things I deal with on a day to day basis in a way that mere words cannot.  

Arrangements were made and I flew out to Toronto. I was treated to an amazing Italian dinner with my hosts, who were the organizing committee for Alexion’s meeting. We talked about my experience as an NMO patient over dinner and I got to know each of them. I’d been a bit nervous about walking into a situation where I didn’t know anyone, but I needn’t have worried-they were so warm, friendly and funny, it was like hanging out with old friends. They completely set me at ease and the time just flew by.

St. James Anglican Cathedral, Toronto

The next morning, I walked over to the conference centre, which was a couple of blocks from my hotel. The conference centre is housed at St. James Anglican Cathedral, which is the oldest church in the city. It was built in 1850 and its congregation dates back to 1797. The white brick and sandstone buildings are beautiful. Breakfast was waiting when I arrived. After a lightning round of introductions, I grabbed a quick bite and then the meeting was underway. 

The general manager of Alexion Canada made his opening remarks. While he was speaking, I could hear this odd squeaking sound behind me and I kept wondering who was doing what while he was speaking. When I finally turned around to see what was going on, I got the most amazing surprise-it was a graphic recorder-the squeaking was the sound of her pens on the whiteboard she was working on. Graphic recorders capture people’s ideas in words, images and colour as they’re being spoken. They create a visual representation of the collective wisdom of the group and allow information to be processed in a new and dynamic way. I have a friend who owns a graphic recording company and he travels the world doing this amazing work. I knew the value of this practice and as an artist, I was super excited to be able to experience it first hand. 

Angela Covert, from the MS Society of Canada spoke first, explaining the MS Society’s role in supporting NMO patients. In 2014, the MS Society very generously took neuromyelitis optica (NMO), transverse myelitis (TM) and acute disseminated encephalomyelitis (ADEM) under its wing as allied diseases. Patients with these diseases are often initially mis-diagnosed with MS and thus many of them are already connected with the MS Society. This move has allowed anyone with an allied disease to access the same support services as those living with MS, which is enormously helpful. Angela mentioned that up to this point in time, the MS Society has not had a huge demand from the NMO community for services, due largely to what we’re guessing is simply a lack of awareness, but I spoke to her afterwards and we are going to partner to see what we can do to change this.

Next it was my turn to speak. Since I was telling my story, I didn’t write a speech, but made some notes of some key points I wanted to make, so I wouldn’t forget. I talked about my 29 year journey to diagnosis, the impact of NMO on my life, the litany of drugs and treatments I’ve cycled through (some of which had disastrous results),  the extensive list of specialists on my care team, the ways in which I participate in research to help move the science forward and the ways in which I serve the MS and NMO community. 

Photo Credit:Angela Covert

To balance things out because I’m not just a patient, I felt it was important to share a bit about who I am as a person. I talked briefly about being an artist, a lifetime volunteer and a wife and mother. I closed with sharing that it was the one year anniversary of the loss of a friend who also had NMO. Of course I couldn’t verbalize this without getting emotional about it, because every loss in our community is personal and I feel it very deeply. It makes me desperate to work harder and faster to do everything I can so we don’t lose anyone else to this devastating disease. Afterward, I was asked if I’d realized that I had everyone in the room in tears. That was a very powerful moment.

My story as interpreted by the graphic recorder.

It wasn’t until I finished speaking that I remembered there was a graphic recorder in the room and I was delighted to see how she had interpreted my story. She did an amazing job! I love that she was able to capture the essence of my story in such a compelling way. I also loved how she drew a cartoon me. I’m such a visual person and seeing how my message came across to others was really enlightening. 

It’s taken me some time to write this because I’ve been thinking about this whole experience a lot. I am so grateful that I was given this opportunity. The people of Alexion have succeeded in getting a drug for NMO through clinical trials, which is utterly amazing.  As much as I was at this meeting to help educate them about the patient experience, I also learned a lot about Alexion as a company and the individuals who work there. Like any science, the work they do is challenging. Research and drug development takes time and time is money. I think too often we forget that there are good people working in what we’ve come to think of as “big pharma” who genuinely care about people living with rare disease and who want to make a difference in our lives through the work they do. It was important to me to thank them for being our allies-I don’t think they hear this often enough from the people whose lives their work directly impacts. 

Having had the opportunity to meet and get to know the team at Alexion, I feel enormous gratitude that they’ve taken NMO on and have had a successful clinical trial. All of the drugs we’ve used so far-Imuran, Cellcept and Rituxan have been off-label use. Once you cycle through these drugs, either because they’ve stopped being effective or the side effects have become problematic, you’re out of options. Not having options can have devastating consequences-NMO left untreated causes blindness, paralysis and in the worst case scenario, death. Having drugs specifically developed for the treatment of NMO opens up more options and options equal hope. You cannot put a price tag on hope. On our worst days, this is what keeps us going.

Disclosure: Alexion paid for my travel costs. All opinions expressed herein are entirely my own.

Hello Summer!

Hello again! I had planned to post much sooner, but life has a way of upending even the best laid plans. I caught an awful bug and was in bed for several days feeling absolutely terrible. I am over it now I think and hoping that I can avoid catching anything else through the end of the year. I am so sick and tired of being sick and tired! 

As you can see, I have new glasses. The ones I got a year ago were no longer doing the job since I had optic neuritis, so I had to upgrade. I chose red frames, even though I really wanted purple. The general consensus is that these were a good choice, so that's something.

Here's some of what I've been up to:

Creating

Believe it or not, I've been doing a lot of writing in the last little while. I just completed my artist statement and bio for the Universal Declaration of Human Rights Quilt Project which I wrote about here. Tal will be creating zines for each of the four quilts featuring each artist in the quilt using this information. I am really looking forward to reading the inspiration behind each artists' work. As things get uglier in the world, this project and its message seems more timely than ever and I am proud to be a part of it. 

I have also been working on my second article for the Rick Hansen Foundation blog, which will be posted in mid-August. The first one, if you missed it, is here. I am trying to keep ahead of the game because August is going to be a busy month.

Watching

The 5th season of Alone premiered last Thursday. Previous seasons have been in British Columbia (three seasons) and Patagonia. This season is taking place in Mongolia and it's all participants from previous seasons who tapped out for various reasons. I loved the seasons shot in BC-it was highly amusing to hear people railing about the weather. It somehow came as a surprise to all of them that a temperate rain forest actually gets a lot of rain. I guess none of them did any research on the area they were going to be going to. 

My friend Greta and I are rooting for Nicole who has MS. She is amazingly comfortable in the wilds-in her previous season in BC, she was sharing her beach with huge black bears and seemed entirely unfazed. She was respectful of the bears, but wasn't the least bit afraid of them. She also has an impressive knowledge of plants and was able to source from her environment things to help keep herself healthy. We hope she wins this time!

The 6th season of Wentworth premiered this week. It's an Australian series about a women's prison that is dark and delicious. I love it! Previous seasons are on Netflix.

Reading

The Marrow Thieves by Cherie Demaline who is a Metis author. This was recently loaned to me by my friend Sue's husband. He was telling me about it at Sue's birthday party and when I read the cover, it gave me the shivers, so I knew I had to read it. It's been a bit slow going because I am still having eye issues, but I'm enjoying it. Here's the summary:

"In a futuristic world ravaged by global warming, people have lost the ability to dream, and the dreamlessness has led to widespread madness. The only people still able to dream are North America's Indigenous people, and it is their marrow that holds the cure for the rest of the world. But getting the marrow, and dreams, means death for the unwilling donors. Driven to flight, a fifteen-year-old and his companions struggle for survival, attempt to reunite with loved ones and take refuge from the "recruiters" who seek them out to bring them to the marrow-stealing "factories.""

Anticipating

I have been waiting (im)patiently to hear back from a medical conference I've applied for a scholarship to attend as a patient partner. I should be getting news one way or the other next week. I am pretty sure com-petition is fierce, but if you don't apply, you'll never get a yes. I also applied for a scholarship for another one taking place in October but I won't hear back on that one till mid-August. I am *the worst* at waiting. It drives me batty.

Other than that, we've been enjoying dinners out on the patio almost every night. It's a nice way to reconnect at the end of the day and enjoy the peace and quiet. I've also been taking my laptop out there and writing while enjoying the fresh air. It's nice to finally have the space to be able to do that. Once I get my article completed, I can think about what projects I want to tackle over the summer. I need to make a list!

2016: Year In Review

Hello to those of you who have hung in, waiting patiently for my return to blogging. It's been a tough year for me physically, so that's why the extended absence. Anyway, not being one to dwell, here's what 2016 looked like:

January:

-My friend Sam Bradd spoke about life as a graphic recorder at Creative Mornings Vancouver.

-I returned to Toronto to do my second term as the Community Representative for BC. This time I was doing grant reviews for Community and Population Health for the MS Society of Canada. I got to have dinner with my NMO sister, Jenna, which was a bonus.

-I won a class with Vivienne McMaster on iPhoneography. I took this shot, which she like so much she used it to promote the class since.

-Inspired by that class, I dove back into photography. I took this shot shortly after and I love the odd perspective.

February:

-I won a class with Tara Leaver called Oracle Cards and made a deck of mindfulness cards from gelli prints I made.

-I won tickets to the premier of Race about Jesse Owens from the BC Sports Hall of Fame.

-I got new ink-my campersand tattoo which was an Xmas gift from my son. Every time I look down and see it, it makes me so happy.

-Husband and I enjoyed the warmer temps with a trip to Granville Island. (The tree was decked out for Chinese New Year.)

March:

-I flew to LA for 3 days for the NMO Patient Day. I had a great time connecting with my community. I also tried Uber for the first time.

-I screened for a clinical trial. After jumping through extensive hoops, I was excluded from the trial, which was very frustrating.

-For my birthday, I took an online class with Roxanne Coble called Creatures. Playing with paint is always so much fun.

-My husband and I celebrated with surf and turf at the Keg.

April:

-My friend Isabel treated me to an evening at the VSO featuring Canadian astronaut Commander Chris Hadfield. This goes down as one of the best musical experiences of my life. I am still listening to Holst's The Planets: Jupiter.

-We started taking Indy up to the lake-it was finally warm enough.

-We went to a belated birthday dinner for me at Storm Crow Alehouse. Love Han Solo in carbonite!!

-My Health Mentors students and I did the annual symposium.

May:

-I spoke at UBC at the Operation Med School about the work the MS Society of Canada does and about NMO. I did an interactive piece where students could experience some of the symptoms people living with MS and NMO deal with on a daily basis which was a huge hit.

-I also gave a short speech to Port Coquitlam City Council and accepted a proclamation from the Mayor on behalf of the MS Society. My husband came along and this was the first time he's heard me do public speaking. Afterwards, he said "I could never do that!" It gave him a quick glimpse into some of the advocacy work I do all year long.

-I started a lettuce and herb farm on my patio.

-I took this wheelchair photo on False Creek, which is one of my most favourites this year. I call it "Gone Paddling". It speaks to ability.

June & July:

(Lumped together, because by this point, I was very unwell.)

-Another most favourite photograph of Indy up at the lake. I love that it's partly out of frame and shows him wildly swinging his water Kong and his teeth. He is in utter bliss retrieving and swimming.

-Vivienne gave a talk on self-love at Creative Mornings Vancouver. Even though I was feeling terrible, I wanted to go to support her.

-I won a class with Bella Civoric, Holy Hush. This was the kit that went with the class.

-We made a few quick trips to the Farmer's Market to get fresh veggies. I always love supporting our local farmers.

August:

-After suffering with brutal tendinitis in my right arm for 8 months (at this point) the brilliant arm surgeon decided I just needed a custom moulded brace. *sigh* Here it is now the last days of December and I am still in pain. *SO* not helpful.

-Spending 14 weeks in bed over the late spring and entire summer had one bright spot-the Olympics & Paralympics were on. It cheered me greatly to watch our women's footie & rugby 7's win bronze medals and to watch WC Rugby.

-At the tail end of August, I started on Rituxan infusion to treat both my RA and NMO. Making the shift in treatment was weird.

-I actually managed to eek out a wee bit of art during this time, inspired by Mandy Stewart.

September & October:

-Husband and I went on a date to a new local bakery, Gabi & Jules who do amazing pies. They sell at our local Farmer's Market and just opened their brick and mortar store. It's great to have such a nice place to have tea and pie when the mood strikes.

-I had the opportunity to visit the Museum of Anthropology at UBC for free and to take a tour that talked about activism and art through the Creative Mornings Vancouver Field Trip program. I have had a visit to MOA on my life list forever and this seemed like the perfect time to do it. I left feeling super inspired by everything I saw. It's the kind of place you can return to again and again and see something new or see something in a different light each and every time.

-Autumn weather finally arrived and with it, cooler temps, which I was grateful for.

-We celebrated my husband's 60th birthday, which given the last few years of very serious health issues, is a milestone that at times I didn't think we'd see. A week later, we celebrated our 26th anniversary.

November:

-I started off the month with a few days in Seattle with my best friend, who was having cornea transplant surgery. It was interesting to see how the US health care system works. One tiny bottle of eye drops cost over $200 down there. It would have been $35 at home. *boggles*

-I volunteered at the Women Against MS (WAMS) annual luncheon and got to meet Canadian soccer two time Olympic bronze medallist, Christine Sinclair. I am a huge fan of women's footie! Loved crossing that off my life list!

-The MS Ambassadors had their annual forum at UBC. It was a great day connecting with fellow ambassadors, learning about the changes being made to how the MS Society operates and to hear about some current research being done.

-UBC NMO Patient Day was also held in November.

December:

-The first week of December I flew back to Toronto because I was invited to attend both HEARMS Day and the ENDMS conference. It was an incredible opportunity to connect and learn with researchers from across Canada and from around the world. It goes down as one of the best experiences of my life. I will be writing more about it in the new year. 

-I finally got a chance to meet my fellow SomeoneLikeMe.ca blogger, Juan Garrido. We've been writing for the blog for together for over 4 years, so it was really wonderful to finally spend some time with him. 

-I also reconnected with Dr. Sam Davis, who is a professor of neurology and neurosurgery, as well as a researcher at McGill University. Sam was the Chair of the first grants review committee I served on (Personnel) and is such a kind and lovely man. We caught up over breakfast. 

-I also got to catch up with the fabulous Dr. Karen Lee, Vice President of Research for the MS Society of Canada. She's expecting her first baby in the spring and I'm so excited for her!!

The rest of my December was snow, (which is unusual for Vancouver and the surrounds. It started the day I left for Toronto and pretty much has continued ever since. We are more than ready for it to be gone.) baking & celebrating. 

New Year's Eve will mark 27 years since our first date. (A hockey game-what else? We are after all, Canadian.) It seems crazy to think it's been that many years.

 All in all, it's been a challenging and very full year.

Happy New Year everyone! Here's to 2017 being kinder, gentler.

And So It Is Done

This humbling letter just arrived in my inbox:

Dear Lelainia,

We would like to acknowledge the tremendous contribution you have made to the health professional programs at the University of British Columbia through your role as a member of the Office of the Vice-Provost Health Patient Advisory Group. We have been privileged to work with you in the development of curriculum for the health and human service programs. Over the past two years, you have shared both your valuable time and personal experiences in order to improve the education of health professional students, expecting nothing in return.

Your role on this advisory group has helped ensure student education is patient-centred and relevant. Your contribution to the Certificate in Collaborative Practice for Health Professionals and the Integrated Ethics Curriculum, among other initiatives, will impact health professional students for years to come.These programs are being used with health professionals from a wide range of disciplines and have the potential to change the way health care is delivered in the future.

We look forward to working with you in the future through the Patient and Community Partnerships for Education and other initiatives.

Louise Nasmith
Associate-Provost Health
Office of the Vice Provost Health
The University of British Columbia

Victoria Wood
Curriculum Manager
Office of the Vice Provost Health
The University of British Columbia

*****

Tuesday afternoon, we wrapped up the work we were doing on this advisory committee. I am kind of stunned to realize that was 2 years of work together. It didn't feel like it-that's how much I enjoyed working with this advisory and the faculty. I am still doing advisory work, (in fact, I am heading back to UBC for to a dinner meeting in a couple of hours) but the certificate in collaborate practice and iEthics work has been completed.

It has been such an honour to do this work with individuals who are so deeply committed to improving health care education in British Columbia. I have learned so much from each of them and I believe that I received in equal measure to what I gave. I am just so grateful to have been invited to join them at the table and to have been able to collaborate and create with them. 

 I too look forward to whatever's coming next.

Nothing Is By Chance

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.

Last night, the podcast went live. It's 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 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.

Good Things!

Hello! Hello! I hope things are going well in your little corner of the world! It's been a very challenging summer. Last week, as if we didn't have enough excitement around here with health issues, mother nature decided to have a go. We got a major storm here on the west coast with 80km winds and rain. Trees went down all over the place-two went down across the street at the neighbour's and took out his fence and the rear window of a car parked across the street. In a matter of minutes, surrounding neighbours came with their chainsaws and handsaws to help. The trees were blocking the road (and the bus route) but they were able to dismantle the downed trees enough to clear the roadway. I live in an awesome neighbourhood!

We also lost power at noon on Saturday and it wasn't restored until late Monday night. We lost the contents of our fridge and deep freeze. It took us 3 hours to clean that up-you can't just put everything in a garbage bag and toss it out. Because of environmental measures here, you have to separate food from packaging. The packaging has to be rinsed and recycled and the food goes into the green recycling bins. Let's just say dealing with dead spoiled fish is not fun. YUCK! It was challenging restocking our fridge too-many of the local stores were also without power for days, so they lost all their perishables too. My fridge is still pretty empty, but I'm working on it. The good news is we got much needed rain and we are okay. We played alot of cribbage, burned candles and when it got dark, made our way around with flashlights. We were completely off the grid at home-no power, no lights, no hot water, no Internet. It was like indoor camping for 3 days.

Now that things are back to normal, I wanted to share that I've finally got copies of my latest zine, Manual Dexterity #4 available in my Etsy shop. I also had a few people ask me about Manual Dexterity #3, the Hallowe'en/Autumn issue I did a couple years ago. I managed to scare up a few copies (see what I did there?) so they are also available. I have limited copies, so if you want one, I suggest you act fast!

                  

I also really excited that my new advocacy business cards from MOO have arrived! For some time now I have been wanting to make some specific to the work I do as an advocate for NMO and MS. I finally got around to it. I've ordered business cards from Moo for years and have had nothing but exceptional service. Seriously, they exceed my expectations each and every time. I decided to order the rounded corners on my cards and to go with the standard business size this time, instead of the mini cards which I love so much. (And can't stop ordering!) They were in my mailbox this morning and they are GORGEOUS! I am going to be so proud to hand them out!

If you'd like to order some for your very own, you can do so here. By clicking the link, you will receive 10% off your first order. Can't beat that!

So..that's the latest news. I am looking forward to Autumn which will be here soon-I'm counting the days!

Sideways

So...it's been awhile since I posted. It's really a case of "Life is what happens when you're busy making plans." I had a NMO relapse and had to have a round of IV steroids in early June and then two weeks ago today, my husband suffered a major heart attack at work. Our lives have gone sideways, so we are kind of in a state of shock still and trying to recover from the scare. Fortunately he had immediate surgery and is recovering, though his heart rate is still wonky. I am trying to deal with what's immediately in front of me, in an attempt to try and keep my stress manageable.

I had just done this revamp of my blog header and template the day before all hell broke loose and then didn't get a chance to actually post. Since I had a sliver of time today, I thought I would do a quick update. Without further ado...

Teresa posted this really interesting book on her Instagram and I was so intrigued I had to run off to the book store to find it. It's really good and reminds me of a zine in so many ways. Fun stuff! I'd love to see more books done in this style. The aesthetics of it is so appealing and it feels like you are almost peeking into someone's mixed media journal in a way. If I was going to write a book, I'd like to do it this way. Someday...

Speaking of zines, I wrapped up the zine exchange I was hosting. I now have a beautiful box of inspiration. So much good stuff!

This was my contribution, the 4th edition of Manual Dexterity. My plan was to have a few copies available in my Etsy store, but with all the health stuff that came out of nowhere, I just haven't had the time. I will have copies for sale eventually and I'll post here to let anyone who is interested know. I just can't say exactly when that will happen right now.

I've been puttering in my 101 year old journal. Some days it's nice to sit down for half an hour and make something. I have just been flipping to a random page and going for it. Slowly but surely, the pages are filling up. I am so in love with this journal.

I have been enjoying exploring my new neighbourhood with Indy. This is part of the green belt one minute outside my door. I feel so lucky to just be able to pop into the woods any time I feel like it. We live in an area that, according to my best friend has a very high incidence of bear sightings, but so far, no luck. I am not afraid of bears-I took a bear aware course years ago, but I do have respect for them. I am always mindful that our paths could cross any time I am out and about and I will be prepared to act accordingly. I don't want any bears to come to any harm because of me.

On Father's Day, we went up to Whistler for the day because we felt the need to see things like this.

And swim in Lost Lake.

 And eat amazing food like this (The BEST fish taco)

And this from La Cantina, our favourite restaurant in the village. My son had never been before and is a foodie so it was fun watching him taste a bunch of different menu items.

My friend Amy very sweetly sent me this book when I was having trouble sourcing it locally. It just arrived this week, so as soon as the weather cools down a bit, I am going to dive into painting. Can't wait. It's so hot at the moment that I don't think my paints would stay open long enough for me to get them onto the canvas. By the way, the author, Tracy Verdugo is turning 50 and so she's giving away 22 spots in her upcoming online class. The details are here. I've been entering daily because I'd LOVE to have the opportunity to expand my painting knowledge. Paint for me is joy and I'm on a mission to invite more joy into my life. I have my *fingers crossed*!

Maureen made this gorgeous paracord bracelet and sent it to me. That was a good mail day-perfectly timed to lift my spirits. I love how chunky it is and how comfortably it wears. It has a really great magnetic clasp so I can manage to put it on and off myself. (This has become a big issue with my jewelery-with my hands so numb, working closures has become a major problem.) I really love this piece and have been wearing it pretty much non-stop. Maureen is a local BC artist-you should check her out!

I have also been super busy with advocacy work. It seems I just get one project done and another pops up. I have shared a big announcement on NMODiaries this week. I have a guest post up for the MS Society of Canada and I'm working on something else that I can't talk about right now. It's so great to be able to have opportunities to contribute and make a difference. I really do love advocacy work. It's the work of my heart.

So..as you can see, life has been rolling along, despite the major bumps and potholes. We are coping. I am going to try and post more regularly over the summer. 

Art & Advocacy

I wanted to share with you that last week I received the Canadian MS Society's Spring/Summer magazine in the mail. As I was flipping through it, I came across me! Back in February, they invited me, as someone living with NMO to join their Flee or Fight national campaign. I was honoured to be a part of it and submitted this photo. I knew it was going to be used-I just didn't know where, when or how. It's really exciting that it was included in the magazine which was sent out to homes across Canada! What a great way to raise awareness!

I also finally was able to gt my hands on a copy of Dawn DeVries Sokol's new book. It's a chunky monkey, loaded with beautiful art journal pages. If you don't own this one, it really is a must have.

I am please to share that my artwork is on page 33.  Both of these pieces of work mean so much to me-the man on the left was my Gramps' maternal grandfather (my great, great grandfather) old man Reimer and the family in the photo on the left is my Gram's family-my great grandparents (I was named (my middle name) for my Great Grandpa Nowell, who died a month before I was born) and my Grams' siblings. (M great aunts and uncles.) My Gram is the tall one at the back. It's a really lovely way to remember them. My friends Seth Apter and Penelope Harris also have work in this book.

I am currently working on finishing up my latest zine and watching my post box for all the zines being submitted to the exchange I am hosting. So far three have arrived and they are amazing. I am looking forward to packaging them all up and sending them off to everyone. I know they are going to love them! I have included the art work that's in Dawn's book in my zine. I couldn't resist!

I also participated in the MS Society BC-Yukon Division's art show. These are the pieces I submitted. It was a great way to help raise awareness for NMO. At one point, as I was taking this photo, two women walked up and one pointed out to the other, the long lesion on my spinal cord shown in the middle piece. (Which, by the way was published in Seth Apter's The Pulse Of Mixed Media.) I leaned over and said "Yeah and that's an NMO lesion, not and MS lesion." They then introduced themselves as scientific researchers at UBC. They were quite excited to see an MRI image used in this way.

It's been a busy time settling into our new home and neighbourhood. I've been busy feathering our new nest. The days just seem to fly by.

On The *Really* Small Screen

(Filming at UBC in early October, 2014)

Twice this year, I did some filming for a new medical course that has been in development at the University of British Columbia called the Certificate in Collaborative Practice for Health Professionals . This new course is designed to help health care professionals strengthen communication and collaboration skills in order to enhance patient-centred care. I have been serving on an advisory committee that has been helping in the development of this certificate course, along with several of my fellow Health Mentors over the last year. The work has been both challenging and interesting. What I’ve loved best about it is that I know that the work we are doing is going to have a very positive impact on how health care is delivered in our province. 

Yesterday afternoon, I received an email from the project manager that the video component of the course is finally finished and available for me to view online. While I can't show you the videos, I can share a couple screen shots!

In this module, I talk about some of the aspects of my patient experience and the impact those experiences have had. I had the opportunity to acknowledge what an amazing family doctor I have by sharing how she makes a difference in my life by the way in which she delivers care. When it comes to be patient-focused, she sets the bar exceptionally high. I am extremely lucky to have her as part of my care team.

In this second screen shot, you'll notice I've got new glasses and a new haircut. (This section was shot in early October.) In this module, I am talking about my views on leadership within my health care team. Who the health care team thinks is the leader and who the patient believes it to be can be two very different things.

I think it's so sweet how they have the little orange circle on the screen that says "Learn more about our Lelainia". It's clickable and when you click it, up comes a brief bio:

This course is currently available across British Columbia and I've been told that at some point, it may expand beyond provincial borders. I can't tell you what a tremendous privilege it's been to be a part of the team helping to develop this certificate program. I am incredibly proud of the work we have done so far, but we're not done yet! The work continues with our focus shifting to ethics. Again, very important and interesting conversations are happening. I am learning so much, even as I am lending my own thoughts and experiences to the process. 

When I was watching the finished video clips, I was getting teary just thinking about how this is going to change lives. Advocacy is something I am incredibly passionate about and it just gives me so much pleasure to be able to use my knowledge and skills in such a meaningful way.

Exciting News!!

So...I have been keeping something very exciting under wraps for just over a month now, but I can finally tell you about it. In September, I applied to be a Community Representative for the Canadian MS Society and I received an email indicating that I'd been accepted as the representative for British Columbia at the end of October. 

A Community Representative is someone who is affected by MS-either they live with MS themselves or have a family member who does. In my case, I lived with an MS diagnosis for 5 years before being re-diagnosed with Neuromyelitis Optica (NMO). I have a number of close friends who have MS and I also have members of my family who live with or have lived with MS as well, so my ties to the MS community run deep. 

Community Representative assess MS research grant applications to ensure ease of comprehension and relevance to MS and offer valuable insight throughout the review process to ensure that research dollars are spent wisely on projects that will have a significant impact on those affected by MS. Each Community Representative spends significant volunteer hours reviewing, evaluating and recommending studies for funding by the Canadian MS Society. 

I have been assigned to the Personnel Awards Review Committee, which is responsible for reviewing Masters, Doctoral and fellowship applications that are involved in both biomedical research and clinical and population health research. This committee is made up of one chair person, ten scientific reviewers (Doctors) and four community representatives. 

Over the next month, I will be working hard on the review process and then in mid-January, I will be flying out to Toronto for a meeting to go over in detail each application our committee has reviewed. 

I am very honoured to have been selected to participate in this process and to have the opportunity to have an impact on the future of MS research in this way. I am really looking forward to working with my committee (I think it will be an excellent fit!) and am excited to learn new things. 

The Canadian MS Society will be posting profiles of each of the Community Representatives on their website soon. If you'd like to learn more about the Canadian MS Society's research program, you can do so by clicking here.

Can YOU Help?

So you've heard me talk about the UBC Interprofessional Health Mentors Program and what an amazing and rewarding volunteer experience this has been for me. (So much so that I hope to do a third cohort with the program!) I have only glowing things to say about the faculty and the students I  have had the pleasure to work with.

What I wanted to share with those of you who are local (living in the Metro Vancouver area) is that the program is in URGENT need of Health Mentors. I am putting the call out here in the hopes that some of you might be moved to step up and help shape the future of health care.

If you are someone who lives with a chronic illness or disability or care for someone who does, I urge you to share the benefit of your experience by applying to become a Health Mentor. I promise you, your story matters! Please take a moment to watch this short video that gives you an idea of the kind of impact you can have.

Inspiring, isn't it? Applications are being accepted for the program until July 31st, 2014 for the 2014/2015 session. You can click here for more information about becoming a Health Mentor. 

If you have any questions about my experience, feel free to get in touch by leaving me a comment and be sure to indicate an email address so I can respond. I'd be happy to talk to you about it. If you know someone you think would be a great Health Mentor, feel free to share this post with them! Thanks peeps!

Head's Up!

(Hands belong to my UBC Health Mentors Program students & I.)

Yesterday was so busy, I didn't get a chance to post here and let you know that my first post (which is about the NMO advocacy work I am doing) is up at NMO Diaries! Be sure to bookmark the site if you'd like to follow along!

Rare Disease Day 2014

What is a rare disease?

A rare disease is defined as a condition affecting fewer than 1 in 2000 people. There are more than 7000 diagnosed rare diseases and many more undiagnosed diseases. Close to 3 million Canadians have a rare disease. In North America, NMO affects 4 in 100,000 people. Currently Canada has 2000 NMO patients. 200 of those NMO patients reside in British Columbia.

How does having a rare disease affect patients?

Financial and administrative barriers deter physicians, researchers and scientists from submitting funding requests for small patient markets. Standardized drug trials require a certain number of subjects for a specified length of time. Due to the small patient market of a rare disease population, there are limited drug discovery initiatives funded by pharmaceutical companies. Therapies may be available but are not distributed or developed further due to the limited demand.

This means that the drugs available to a patient are severely limited and often the drugs used to treat their diseases are used “off label”, meaning they were developed for a completely different illness. This can lead to a lack of drug coverage by the Canadian government.

For example, the current drug therapies approved in BC for NMO are two immunosuppressant drugs in pill form, which were developed as anti-rejection drugs for kidney transplant patients. A third drug which is administered as an infusion is being used in the US, but does not currently have coverage in Canada. If the two immunosuppressant drugs in pill form fail for any reason, there is no back up drug for an NMO patient to turn to. My NMO specialist in BC is working hard to change this by lobbying the provincial government for coverage.

Another big issue for people living with a rare disease is the lack of scientific knowledge and quality information on the disease, which can lead to a delay in diagnosis and/or inappropriate or a lack of care. Initial mis-diagnosis is common.

Drawing from my own experience, I was initially mis-diagnosed with MS, which is common for NMO patients. When I visit a hospital for any reason, I can guarantee that every single medical practitioner I come into contact with will need to be educated about what NMO is and how it affects me. I’ve given what I refer to as “A Crash Course in NMO 101” to up to 5 health care providers in a single visit. When you are sick, it can be exhausting having to do this.

So what can we do to support those living with a rare disease?

The most difficult part of living with a rare disease is feeling like you are alone. Knowing that others care is so important! You can help raise awareness-it’s really easy:

1. Visit Rare Disease Day to download a social media banner for your Facebook page or a profile picture for your Twitter. Rare Disease Day is on Friday, February 28th, but you can do this any time this week.

2. Share on your Facebook status update or Twitter post that you are participating in Rare Disease Day and invite your friends, family and followers to do the same!

3. Share a link back to this post on your blog, twitter or Facebook page.

4. Comment below to tell me you're participating and send me a link-I'd LOVE to see and to thank you!


For more information on NMO, please visit: The Guthy-Jackson Charitable Foundation.

Good Things!

I have been invited to speak to the BC Chapter of the Canadian Association of Neuroscience Nurses (CANN) at the end of April about my experience with Neuromyelitis Optica (NMO). I am really excited to have the opportunity to share my story with health care provides who are working in the neurosciences field and help raise awareness. I will be speaking for about half an hour and then there will be a Q&A afterwards. I look forward to the conversations that will happen there.

In other news, I also got word that a small piece I wrote about a piece of clothing that has deep sentimental value to me is going to be included in Vancouver Artist & writer, Leanne Prain's new book, Strange Material: Storytelling Through Textiles will be released this autumn by Arsenal Pulp Press.

What's it about? Here's the scoop:

"Strange Material: Storytelling Through Textiles will explore the relationships between handmade textiles and stories. Through the text, the act of weaving a tale or dropping a thread will take on new meaning for those who may have previously only seen textiles as functional objects. The book will encourage storytelling to leap off the page and into the mediums of batik, stitching, dyeing, fabric painting, knitting, crochet or weaving. The artists that will be featured in the book create narratives with a needle, instead of a pen, dye rather than ink, weave i place of paper. Themed chapters will include fiction, poetry, wearable stories, manifestos, memoir, pictorial stories and humour."

I wrote the small piece in response to Leanne's call back in the summer and then promptly forgot all about it! That's the fun of long lead times with books-you submit work months, if not years in advance and by the time you get the news that your work has made the cut, it feels like a surprise out of the blue. I love those kinds of surprises! Leanne said there will be a book launch party in the fall and to expect an invitation. I'm in-it should be lots of fun!

Speaking of surprises out of the blue, I also received a "you're invited" email from the local curling club that I volunteered with for the 2014 BC Wheelchair Curling Championships last month. They are hosting a thank you dinner this Friday for those of us who volunteered to help host the event. It's super nice of them and it will be fun to talk about the incredible Olympic curling that team Canada played!

NMO Day 2013, Vancouver

Top: NMO Day Venue, the beautiful VIFF Vancity Theatre

Bottom: (L-R) Nancy Reimer, NMO Advocate, NMO Walk/Run Organizer

Dr. Katja Van Herle, Guthy-Jackson Foundation

Dr. Tony Traboulsee, Neurologist, Researcher, NMO Specialist UBC

Lelainia Lloyd, Advocate, Health Mentor

Last Thursday was NMO Patient Information Day here in Vancouver. As I've mentioned before, I was presenting about the Health Mentors Program. It went very well. There was alot of positive feedback and I was able to hand out pamphlets to people who were interested in applying to be Health Mentors next year. I actually ran out of pamphlets!

My friend Nancy Reimer talked about being an advocate and organizing the first NMO 5 km walk/run (the first anywhere in the world!) this past May. She did a great job. When she talked about her 9 year old son's battle with NMO, it brought me to tears. Kids should not have to deal with life threatening illness!

Dr. Katja Van Hurle, from the Guthy-Jackson Foundation spoke about the work the foundation is doing. It's easy to see from her energy and enthusiasm that she is such an asset to the foundation. Listening to what she had to say, it was impossible not to feel hopeful and encouraged about the progress the foundation is making. I hope to be able to attend GJF's NMO Day in San Diego next year. I would love to connect with the larger NMO community in person.

The MS Society Lower Mainland Chapter also did a presentation on the support services they offer. Since the Guthy-Jackson Foundation is based in the US, the Canadian MS Society has kindly offered to take NMO patients under their wing and offer all their services to us as well. 

I got a nice surprise when they were showing their slides. There, up at the top left of each one was one of my photographs! That's my hand on top and the rest belong to members of my support group. I shot this about a year and a half ago. So far it's been used on the cover of the Peer Support information pamphlet and now as part of their slide show header! 

Yesterday I had to head out to UBC for a neuro appointment. When I arrived, one of the researchers was at the front desk and immediately greeted me and told me what a great job I did on my presentation. When the neuro fellow came to get me from the waiting room, she told me she'd heard great things about my presentation. I wasn't expecting this, but it made me feel really good to know I'd had an impact. The feedback has been very positive. I really love doing advocacy and awareness work.

This is Annie, one of the NMO researchers at UBC. Without her hard work, NMO Day would not be possible. She is a dynamo at pulling everything together and such a kind and lovely person. We adore her!

So...that's the scoop from the 2nd annual NMO Patient Day here in Vancouver. I'm so grateful to live in a city where connecting to others living with this rare disease is possible. Together we are stronger!