Share your NMO Experience

I have this overwhelming urge to apologize to you all for our infrequent posts but Erin, Christine and I are doing exactly what we encourage on this blog – to live life to the fullest despite having NMO (Neuromyelitis Optica).

Erin’s son Allen is a toddler now who is full of energy and eager to melt your heart. Recently Erin planned his first birthday party with a guest list of over 60 people! Post pregnancy, Erin has struggled with her NMO symptoms and tried her first round of PLEX (aka plasma exchange) with some success. You might catch her on the various NMO support groups on Facebook.

 

 

 

 

 

 

 

With her win of MasterChef, Christine is (reluctantly) our new poster woman for NMO. After her win, she’s been touring all across the US to be on various talk shows and recently travelled to Vietnam to be on their production of MasterChef. Look for her cookbook to be released May 14th.

Buy her new cookbook here!

 

 

 

 

 

While I’m still enjoying my maternity leave with Sophie (in Canada we get 1 year), I have also returned to school online to complete my marketing degree, am focusing on my health by way of obsessing over working out and am in talks for a special project that I’m unable to speak about right now. As a new family we recently travelled to Mexico and Whistler, BC.

 

 

 

 

Since we are out exploring our great world (and we’ll continue sharing those experiences) we thought it might be great to put a call out to other NMO patients to join us. We’re looking for guest bloggers to share an experience on NMO Diaries. You can write a blog, do a video diary or be interviewed by us. So share your MS walk, running a marathon, recovering from an attack or any other experience that excites you. Email your interest to nmodiaries@gmail.com.

Whistler 2013

We just returned from our trip to Whistler, BC and this year we made it a family event, bringing along my mother and brother in laws, one of my best friends and Mike’s aunt and uncle were able to meet us. And of course, my Sophie goes where we go. Many people were skeptical that I would be on my snowboard 6 months after giving birth so in true rebellious fashion I needed to prove them wrong. I like the satisfaction of saying, “I told you so”. Snowboarding is my representation of dusting myself off and getting back up – from NMO (Neuromyelitis Optica) and now having a baby.

I don’t know how it happened but somehow I’m a worse boarder than I was before. Why you ask? A couple of days every other year isn’t enough to get good at anything plus I still feel like an alien carrying these few extra pounds from child bearing. I pray that I’ll be good at the sport one day but the biggest barrier to my success is my ability to trust myself. As I stood at the top of each run I just couldn’t find my inner peace. I used to love the thrill of thrusting myself down the mountain yet this time I couldn’t find my excitement. I plugged my iPod in for motivational music and tried for inspiration from the snow covered trees and still nothing.

On my second day I spent the morning by myself cruising down each run, completing turns and only falling once. I still could not find my inner peace but I had a glimpse of it. I love being someone’s mom and someone’s wife but along the way I have been forgetting to be me. I don’t trust myself that I will find me again but I’ll keep forcing myself in situations like snowboarding till I do. Just like recovering from an NMO attack, maybe if I keep piecing together each of these fragments I’ll emerge a revised and improved version. I want to be the best me so I’m a good role model for my daughter.

Now that we’re home I’m planning to hit the hills again here in Ontario. They say practise makes perfect. Until then, I have prayer and laughter.

Here’s a sample of a song I use to stay motivated on the mountain:

Caution: Blind Boarder

Earlier this year, I tried skiing for the first time as a vision-impaired person. You must be wondering how this is possible. Well, the Breckenridge Outdoor Educational Center (or BOEC) is a non-profit organization dedicated to making outdoor recreational activities possible for people of all ability levels. This means the blind, the amputee, the autistic can ski in the winter or raft the whitewater rapids in the summer. Instructors are highly skilled and trained, and I can speak from personal experience because Jeff, my ski instructor in February was fantastic, and this time when I tried snowboarding, Wendy was also phenomenal.

That’s right, I tried snowboarding this time. I had wanted to snowboard in February since my husband and friends mostly all board, but the BOEC warned me that snowboarding was harder to pick up and that I’d be better off skiing if I were only staying for a couple of days. But this time, I defied my senses and decided to try boarding anyway.

Off to Breckenridge again we go. It was the very beginning of ski season so the snow was pretty icy. But to my surprise, I picked up boarding basics in 1.5 days! I owe it all to my awesome instructor, Wendy, who got me doing toes the first day and then some heels and even connecting a few turns by second day’s end. I used to skateboard a little when I was in high school, so maybe some of that carried over. Mostly (aside from the great instructor), though, I think my fearlessness gave me an edge. Most of my friends when they first learned to board fell frequently because they were too scared of the slopes. But because all I could see was vast whiteness, I didn’t know how steep a run was or where the cliffs were, so I had to just trust my teacher and my instincts. And this gave me almost no fear. Of course, every time I knew I was about to crash, I did get scared, but only because my tailbone remembers exactly how much it hurts to fall. Now as I write this post, it’s been a couple of weeks since the trip, and my tailbone is still hurtin’. What I want for Christmas? Butt pads, please!

Snowboarding was fun, and I found it easier than skiing. I had less motion sickness this time which made the experience more enjoyable. (The motion sickness is from not being able to tell if I’m moving or at a standstill because everything is just white.) I also got to see a very pregnant Erin while there. It was good to catch up in person even though I’d just seen her the month before at NMO Patient Day. This time, though, both our husbands got to also catch up.

John caught some of my boarding on video. Here it is for your viewing pleasure. I hope this both encourages and inspires all of you out there living with a vision impairment or Neuromyelitis Optica (NMO) to realize that you can do almost anything if you put your mind to it and want it badly enough. Don’t let the disease limit your joy in life. Happy holidays!

Keystone Day 2

The footage that was taken was on day 2 at Keystone of us skiing; it probably was not a smart choice we went 2 days in a row because our NMO (Neuromyelitis Optica) was definitely acting up. This was the first time I used my Flip camera, please bare with me with my video recording skills.

 

YouTube Preview Image
04
Mar 2011
POSTED BY Erin
DISCUSSION 1 Comment

Traumatic experience

Poor Jenna almost had a traumatic experience when John and her decided to do a run together. I sat down at the bottom of the mountain with Christine – we were just talking and hanging out waiting for everyone to return.  When Jenna returned and started telling the story, I was thinking take out the camera and start recording her traumatic experience. This is going to be great for the website!  You can’t even tell she has NMO (Neuromyelitis Optica)!

 

YouTube Preview Image
04
Mar 2011
POSTED BY Erin
DISCUSSION No Comments

Colorado Ski Reunion

Every year we try to head out to Whistler, British Columbia because we love the mountains and the ski village mentality but this year we jumped at the chance to visit Erin and Eric in Frisco, Colorado at the same time that Christine and John, who flew in from Houston, Texas. We were all a little surprised that our first reunion since meeting at the Guthy-Jackson Patient Day in November would happen so soon but Erin, Christine and I have become a close team of warriors battling our disease, NMO (Neuromyelitis Optica) together.

This was the first time that Erin and I attempted to take up an old hobby since our diagnosis. I was terrified of the pain and you’ll see my first run was really like the first time again but truth be told, I was more scared of breaking a promise I made to myself a long time ago. Christine took up skiing for the very first time – now that’s courage!

I’m so blessed to have shared this experience with such an amazing support network. You’ll hear us laugh a lot (especially Erin) through our pain, our bad jokes about my butt pads, and John who was so hard core on the mountain he actually ripped the crotch right out of his board pants!

Note: Sorry about some of the bad video footage. I’m still learning how to use my Flip Camera.

YouTube Preview Image
27
Feb 2011
POSTED BY Jenna
DISCUSSION 6 Comments