Disney World at Christmas

There’s something about seeing the castle that made me giddy, a reaction I wasn’t expecting. We never went to Disney World growing up – it just wasn’t something we could afford so I really had no expectation and no real understanding of what I missed as a child. When Sophie was still in the womb I used to talk about all the things I’d want her to experience. Disney was one of them. This year our work schedules aligned and we were able to get away at Christmas, something neither of us had done before. Sure, our family was a little peeved that we went away but for one year it was totally worth it.

Christmas at Disney is, well, magical. Even with 80,000 people it’s a special place. We had planned to take Sophie when she was older and I definitely still will do that but at 2.5 yrs old, she was overcome with joy. With reactions like this:


And this:


It was the best Christmas of my life. Seeing her reaction to her heroes, the castle, the parades and the rides will hold memories for a lifetime and then some.

Navigating through a large crowd, standing in long lines and walking all day does take its toll especially for someone with NMO (Neuromyelitis Optica). We stayed at a property close by and rented a car. We started early, took a break mid afternoon for a nap back at the condo then headed back for dinner and the evening parade or shows. On one of the days I asked for a Disability Access Card, which provides a return time on an attraction instead of waiting in lines. I found that extremely helpful because after our first day I secretly struggled with excruciating back pain where my lesions caused a flare up and swelling. If you ever have an opportunity to visit Disney but especially at Christmas, I highly recommend it. Here’s a few more pictures of our trip.







On September 20th, 2 days before my 5 year anniversary from my first major neuromyelitis optica (NMO) attack, which was a transverse myelitis (TM) attack that left me in a wheelchair for quite some time, I managed to finish a 10 kilometre run with a few members of my family. Originally encouraged by my Uncle Roy who just turned 65 and is planning to run 5 major world marathons, he set out to encourage us younger family members to get active.

This is my family pre 10k race. We’re all still so shiny and clean here. Note that it was really chilly (only 8 degrees celsius) but we warmed up quick!

before the run


This is me with my biggest supporter (mainly ’cause he listens to me whine a lot), my husband, Mike. After all these years, this is probably my favourite photo of us.


My pre-race message to other NMO patients. I call out other patients of any disease to find their #TOUGHLIKEME moment and be your own hero.

My uncle led us in a big team huddle with some inspiring words.


And finally after the months of training and hard work, here’s my finish to my run.

This is my family after the run. My Uncle Roy (the R) made us all t-shirts to represent a letter in our last name.  It was rather fitting to run it with my cousins and Uncle and Aunt. When I think about it now these are a few of my biggest supporters especially during my early days of NMO. My uncle in black didn’t run it but he jumped in the photo to be our “space” in our last name. Don’t get confused – van Amerom is my maiden name but I’m now legally (and proudly) a Drolet.

family pic

This is me (in the middle) with my cousins, Allison (left) and Gudrun (right). Allison barely trained but she raises a bunch of kids and runs a farm/vineyard so she’s always running around. And Gudrun ran herself thin for a few years now and was able to keep up with her brothers who are total machines. I’m so proud of both of them.Zoo6


To check out my time results compared to all of the other 3000 runners click here. I finished at 1:14:11, which beat my goal of 1:15 but just barely. I’m already trying to decide which run I’ll tackle next.

Allen’s View of the World

Allen has learned how to take pictures on my iPhone and his tablet in the last few months. Eric came up with a great idea for my next vlog to make a slideshow of all his pictures and what the world looks like through his eyes. So I hope you all enjoy we got a kick out seeing what he likes to take pictures of.



Oct 2014

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How does NMO define you?

There have been various research studies published by the International Committee for the Study of Victimization that look at people who have suffered serious adversity, everything from disease, prisoners of war and accidents and then continue to survive. Their studies have categorized people into three groups: those who were permanently dispirited by the event, those who got their life back to normal, and those who used the experience as a defining moment to make them stronger. I believe they call it the “hardiness factor”.

Over the years I’ve met NMO patients and their caregivers (because disease affects our loved ones too) in all of these groups. To say the first group saddens me is an understatement – I’ve personally come dangerously close to giving up so I completely understand the feeling. In fact, I’m sure I’ve done the range of groups several times over. When I was first handed the diagnosis all I wanted was to get back to normal. To this day I’m still not sure I’ve ever really acknowledged my true feelings about the diagnosis and all the events afterwards. Most days living with NMO is just a forced lifestyle change but every once in awhile I like to push the limits and make a point of trying to live life to the fullest. I know there are other patients far worse than me, some in wheelchairs or walking aids. Having experienced that temporarily I know that could easily be my reality too one day so I in that sense NMO defines me and how I challenge myself.

As of a couple of weeks ago I’ve been sporting this new accessory. DSC_0499My uncle, who just turned 65 yrs old, is a world marathon runner. He encouraged my entire family to participate in a 10k run coming up this fall. When I received the first email from him my initial reaction was that it just wasn’t possible. I haven’t run or even tried since my diagnosis. In my previous life I’ve completed a few runs and I always found it exhilarating. After several more nag emails I thought I’d take our pug for a longer walk and see how that went. Before long I was working through the back pain and I registered both myself and my husband towards a new fitness goal. That went well for several months. I was even running up to 5k regularly every other morning at 6:15am. But then I got brave and stubborn. A combination of limited feelings in my legs and being head strong led to damage in my ankle and this very unattractive air cast for 4-6 weeks.

So here I am 3 weeks before this run and I want it so bad. I’ve taken the cast off at home as much as possible but it still hurts more than I’m willing to admit. I’m a mix of anger, disappointment, demotivation and pent up energy. This will be my third attempt at this particular run having become ill with NMO and bronchitis twice before. And there are other family members registered who I don’t have a high opinion of anymore and I’ll be damned if they run it but I don’t.

This run is personal for so many reasons.

As of right now I don’t know if I’ll get to run it. At this point I don’t feel I’ll be ready. I’m still hoping to try but won’t at the cost of permanent damage. This injury breaks my heart but not for the obvious reasons but because the last several months have been a glimpse of who I used to be and I miss her.

Guide Dogs for the Blind


I was recently in the Bay area with my husband, John, as part of a fundraising effort for the Guide Dogs for the Blind, a school training labrador and golden retrievers to become working dogs. I led a cooking workshop for the recipient of the silent auction item (a gastronomic evening with me) and her fourteen guests. After the interactive culinary class, we enjoyed the three-course dinner together al fresco at Joan Boyd’s home in Napa, owner of Boyd Family Vineyards.

The day before the dinner, John and I visited the GDB campus in San Rafael. It’s a gorgeous campus—I mean, who can beat that California climate and scenery? (Well, I guess the scenery would be of little value to the school’s human students.) It was nonetheless a nice getaway from the Houston heat, and with wine and puppies, what else could I ask for?

John and I got to experience walking with a guide dog (yes, John was blindfolded). We strapped the GoPro to our heads—the footage will later be made into a Blind Life YouTube episode. Best of all, we had puppy playtime! How could you not love those pups pictured above?

A future guide puppy is specifically bred and born in-house at GDB. At about 12 weeks, they meet their raisers, or volunteers all over the country who foster the puppies—socialize them and give them basic training—until they’re over a year old. THen the puppies return to the GDB where they receive additional training to become a guide dog—think of it as their master’s degree.

Owners are matched to dogs by personality, lifestyle, needs, even walking pace. Humans have to be trained on how to work with their guide dogs, too, so potential owners come stay on the GDB campus for two weeks for training. The GDB is set up like a cozy college campus, complete with a cafeteria with customizable menu, individual dorm rooms, a student center/union, a gym, and so on. At the conclusion of the two-week program, there’s even a little graduation ceremony for the dogs, during which they’re officially given over to their new owners. So cute.

I’ve thought a lot about getting a guide dog over the years, and after my visit to the GDB, it has become a more serious consideration. To learn more about the GDB, their mission, programs, opportunities, how to become a puppy raiser, and how you can support, visit the Guide Dogs for the Blind website.

Aug 2014
POSTED BY Christine

Jenna’s trip to Mexico (2014)

We’ve just returned from a beautiful family trip in Mexico again. I love Mexico because of the calmness, the air, the kind hearted people and of course, the warm weather. We once again stayed at a Karisma property, which we were introduced to several years ago when we were planning our wedding. We were scheduled to be married in Jan. 2010 at one of their adults only properties but had to cancel in Sept. 2009 when I became really sick with neuromyelitis optica (although at the time we thought it was just transverse myelitis).

At this Karisma property it is a family resort but they still offer the same caliber of wedding we had once hoped for. Now I have to say that we had a beautiful day in July 2010 here in Toronto but geez, for the entire week every time I saw another bride go all teary eyed down the beach I got a little angry. I’ll be the first to say that I’m ridiculously happy – I have a wonderful marriage and the most amazing little girl as a product of that – but this was the first time I felt such rage at NMO for robbing me of something. For the last 4.5 years I’ve just dealt with this stupid disease always saying ‘this too will pass’ but I dunno, I think I’ll always be angry at NMO for taking away my beach wedding.

For those of you with NMO wondering what flying is like, I’ll tell you that it’s less fun for me now than it used to be. Even though we use the stroller friendly/handicap line through the security checkpoints, the airport feels like you’ve run through a gauntlet. I find sitting still for extended periods of time painful and within the hour my spine swells, the pins and needles return in full force of all extremities and I can always count on an eye ache. The worst part is having to suffer in silence because once you take off there’s really nothing one can do except pray, try to sleep and/or drown myself in the horrible inflight movie. There are things I do to minimize the flying experience. The day before and after the flight I reserve for sleeping/resting. I stay hydrated and take a pain killer before I board. During the flight I get up and head to the bathroom to wash my face, which I find helps keep me calm. And I remember the destination is either a happy place or home, sweet, home.

Sophie truly enjoyed playing in the sand and experiencing new cuisine like guacamole and beach BBQ paella. I absolutely loved the sunshine. It’s been so dreary and cold in Toronto for so long that I had missed the fresh air and the vitamin D. Within a day I felt rejuvenated, more rested and the exercise of swimming, walking and smiling almost made me forget I have NMO.




Our Cruise Vacation (and the chain of horrible events)

For those who know me well it’s no secret how much I suffer from wanderlust. On days when I need a quick distraction I surf the Internet for “vacation porn”, shopping for deals, reading reviews and stalking friend’s Facebook pages for travel photos. So naturally I was thrilled our family, including my mother in law and her friend, were taking a cruise on Royal Caribbean. Now, I’m very grateful that we are fortunate enough to even get a chance to go but so many horrible things happened it was beyond comical. I don’t cry when my neuromyelitis optics (NMO) acts up but a bad vacation will actually bring me to my knees.

Thurs prior to leaving – Sophie comes home with yet another sinus infection.
Friday prior to leaving – I catch her infection…again.
Saturday 9am – Mike checks us into our Air Canada flight for Sunday 9:30am flight.
Noon – news reports poor IT shuts all computers down at our airport.
5pm – we double check flight status for the morning. Website states flight is cancelled.
5:01pm – Air Canada site won’t allow rebook, reservation line is busy, travel agent didn’t even get alert it was cancelled. Advised by travel agent to “just get to the airport”. Alert those travelling with us to hurry.
5:15pm – rush out door. Arrange cousin to meet off highway for dog hand off.
6:30pm – Mike begs counter for last flight to Florida, to Ft. Lauderdale, 3 hours from port of call. No room on any flights to Florida tomorrow.
10:15pm – after several delays, flight finally leaves. Sinus infection feels like my head will explode with flight pressure.
Sunday 1:30am – Ft. Lauderdale at car rental. Their computer system is down too! Wait in short line for long time.
2:30am – leave for hotel.
3:30am – Sophie finally settled for the night. I must send work emails, research baby store since we left the stroller in our hurry.
9am – leave hotel for breakfast, buy new stroller, hit drugstore for cold meds, drive 3 hrs to port and return car rental.
Monday (day 2 of cruise) – Sophie projectile vomits at dinner. Super sick. People give mean stares.
Tuesday (day 3) – I am projectile vomiting from both ends.
Wednesday (day 4) – it is obvious we have a virus. Push through St. Maarten port.
Thursday (day 5) – quietly sick in public stall onboard overhear 2 women speaking that their husbands and son have virus with similar symptoms to Sophie and me.
Friday (day 6) – 3rd port of call, Cococay, is cancelled due to rough waters. Sophie is a nightmare as she is clearly miserable.
Sunday 7:30am – get through US customs faster than anticipated disembarking. Car service to airport I ordered not there yet. We stand in cold.
8:50am – car service finally arrives. We are frozen.
10am – we just miss earlier flight to Toronto. Our 1:15pm flight delayed by 1/2 hr.
2:40pm – flight delayed several times before finally leaving Orlando.
Late evening – Mike now sick. It is definitely obvious a virus was onboard.
Monday next morning – all 3 of us are still sick. I work from home. Find out best friend’s Grandpa passed away and other friend’s Dad had heart attack while away.

Despite all that (and more that just isn’t appropriate for a public blog) we did take some nice photos that offer a perception that we had a lovely time. I think it’s safe to say we won’t be travelling any time soon as we’re happy to sleep in our own beds.

This is us on formal night…right before Sophie became horribly ill all over our formal wear.

 We’re both horribly ill here but that didn’t stop us from enjoying the sun and surf.  

Sophie on a nature conservation tour in St. Thomas.

Patient Day 2013

Patient Day 2013 was a little bit of awesome. Ok, it was a whole lot of awesome. When I compare my first Patient Day in 2010 to this year (I missed last year having a newborn) I was able to absorb so much more information.

In 2010 I was newly diagnosed with neuromyelitis optica (NMO) and I swear I thought I was the only one, especially in Canada! We were also newly married so as if that doesn’t come with its own challenges, my husband and I had no idea what life with NMO would really be like. I stumbled on the Guthy Jackson website and without much thought I knew I had to meet other patients. When I think about it now I can’t believe I was scared to speak to other patients, especially those I perceived as having it worse. I’m embarrassed to say it now but back then I thought by speaking to those in wheelchairs or with walkers or with visual impairments I would somehow get sicker, even though I’d experienced all that and more. In short, I wasn’t ready to admit I was one of us.

This year another patient and her husband sat at my table – it was their first time. I wondered why they were so quiet until in the evening at the bar they admitted how overwhelming it all was and I instantly recalled my first year. I’m kicking myself that I didn’t focus more on them ’cause after all, we should be there for each other. So other patient (who I won’t name here): take comfort that next year you’ll know us and although I wish we could have met for another reason, you are both part of this amazing network with nothing but endless love and support.

I love my NMO sisters Erin and Christine. They took me under their wings in 2010. For that I am grateful. I am also grateful that my best friend, Andrea, joined me this year. She has been one of my constant supporters and I love that she met the girls, the other amazing patients and we finally had our best friend trip.

Me with super mom, Nancy Reimer, who organized the very first NMO walk/run, and her son Riley.


Erin Miller is obsessed with Sprinkles, the cupcake shop in Beverly Hills, so every Patient Day we make time to trek out for our bedtime snack.











Look everyone!  It’s another workaholic NMO patient! (Me with Sandra Adda.)










With Courtney Engel, me, Christine Ha and Erin Miller.








With my best friend Andrea in front of the famous Chinese Theatre.











Niagara Falls 2013

Recently we spent quality family time at Niagara Falls (the Canadian side in Ontario). My Dad just turned 65 years old and it was also my Mom’s birthday so we thought to do something special.

Dad won’t admit it but he found turning 65 difficult. Although it has been years of failing health (he was a lifelong smoker who was finally able to quit last year), being labelled a “senior” forces one to really evaluate what one can do better.

Living with Neuromyelitis Optica (NMO) has forced me to make that evaluation sooner. I’ve read countless dietary books, blogs and medical articles and have tried various meal plans. I push myself that extra 5 minutes on the elliptical machine or just another 25 crunches. If I had a choice, I’d live in denial of the inevitable aging and go eat a juicy burger.

But I want more moments like this:







And this:







(That’s my Mom, Ellen, and my sister, Debra, with Sophie and I.)

The majestic beauty of the Falls reminds me to take a moment and appreciate that life is bigger than me and definitely bigger than this disease.

Meet Courtney Veston

Many of you are participating in MS Walks across North America.  We’re grateful that you’re getting the word out on Neuromyelitis Optica (NMO).  Courtney built an impressive team in her home town of St. Augustine, FL so we wanted to get her impression of the day.  

Tell us about yourself.

I am a Navy vet and I separated in January of 2006, moving from Hawaii back to my home town of St. Augustine, FL. A year later I married my Navy sweetheart.

In September of 2009 I started experiencing weird sunburn feeling in my legs and arms and it was very sore to the touch. I didn’t think much of it. My husband and I went to visit my in laws in Pennsylvania and I began experiencing very bad headaches, then on the drive back home I was unable to urinate. I went to the ER when I got home and received a catheter and due to the fact of the tingling and sunburn feeling, I was seen by the Neuro team. I was placed in ICU for about 4 days then eventually diagnosed with Transverse Myelitis. About a month went by and I was somewhat ok, only having headaches so went to my primary care physician and was given a pain killer. Few days later I was shopping for Christmas and next think I know I awoke to EMTs. I was rushed to the hospital as I passed out while in the store. The hospital kept me overnight and released me. Then a bit later I was very nauseous, throwing up and had unbearable headaches. I was so tired all the time. My husband took me back to ER where the hospital said I had meningitis. I stayed in that hospital for about 11 days and was released. Not too much longer after that my left eye started to act up, almost as if a curtain was being drawn over it and it began getting blurry gray and eventually went completely black. I had an appointment set up with Jacksonville Mayo Clinic but it was still months away. I called Mayo and the neurologist told me to get the ER ASAP! I brought all my hospital records, notes, MRI’s etc. After being reviewed by the Mayo ER I was admitted. Next day the team of Dr’s including the Neuro chief came in with their diagnosis of NMO. I was relieved yet scared at the same time. I still to this day do not carry the antibody for NMO.

I live as normal of a life as possible. I have been married almost 6 years, no kids yet (I’ll get advice from little Ms. Erin Miller) but hopefully that will happen soon. I work 40hrs a week at the most wonderful caring place as an Insurance Agent. I walk unattended which I am happy about, and spend lots of time with my nieces and nephews. I love my life even with the disease. I guess I believe everything happens for a reason…taking the bad and making the most out of it. I am a very positive happy person and most would not think I have anything wrong with me. I am thankful for all of those in my life.

What motivated you to do the MS Walk and build a team?

I wanted to do the local MS walk as it was my time to share with others about this disease. Most people have not heard of NMO so I wanted to spread the word. I think if I can help raise money for MS and a cure can be found, then that is one step closer for a cure for NMO!!

The NMO community was really impressed with the size of your team. How did you convince so many people to join you?

I was born and raised in my little town St. Augustine, FL as was my mother and family so we are very familiar with the community and businesses. Most of those who couldn’t walk donated, such as the businesses that sponsored my shirts. The walkers were made up of my friends, friends of friends, coworkers and my family. It was truly an amazing turnout and I couldn’t have been happier! I did have a fellow NMO walker/wheeler Mia Stout Byard that made the 2 hour drive up with her daughter and her friend to attend my walk even though there was a walk the same day in Gainesville where she was from.

Tell us the details of the walk.

The walk started at the First United Methodist church downtown. The weather ( for Florida) was dreadful…it had been such a rainy weekend but lucky for us it slacked up for the walk and it was just chilly. I didn’t mind as I’m on steroids so the cold is good for me. The shirts I designed online and had a friend of ours put it in the format to have them printed. We had a table and tent set up with Guthy Jackson brochures, I had rubber awareness bracelets made to hand out and my friend had awareness cozies made. The company that does our work shirts gave us a fabulous deal and I was able to purchase shirts for my entire team consisting of 63 people and them some!

You’ve inspired other patients to act as a Patient Advocate. What advice would you give anyone wanting to get more involved?

I became an advocate by chance. I really am not one that likes to be the center of attention at all but I do like any community involvement. I have a wonderful group of family and friends that would do anything for me and they came through as usual for this walk. I highly recommend anyone wanting to get involved to get a nice group together so they can help out. Before you know it, you become very overwhelmed!

Do you plan to make this a yearly event? If yes, what would you do differently?

I have spoken to my family and friends and they would like to try and get a NMO walk on our own. I know its hard work, but again I know so many folks we can make it happen. If not I would definitely have another team for next year.

What surprised you the most about the day?

I was surprised the most at the people that actually signed up and actually showed up. A lot of times you receive what you think will be a massive team then no one shows…so I was ecstatic for the turn out and felt like a celebrity. The North Florida MS chapter could not believe the size of the team. It Made me very proud.

Is there anything we missed that you want to share?

I just want everyone to know that just because you have this rare disease do not let it slow your life down. Take things as they come as I do. I live life as normal as I can and surround myself with wonderful people that make my life that much better. I have an awesome husband that through all of this has stuck by my side. I think to myself that I am lucky as things could be worse. Again take it day by day and keep that positive attitude. It’s amazing how much better you will feel. If folks ask about your awareness bracelet or about the disease don’t be afraid to share. I am very open about my disease and what I go through on a daily basis. A lot of people take steroids for a small cold and often I hear them say they have new found respect for what I go through. That makes me laugh.