An intimate interview with Nancy Reimer, NMO Advocate

This week we’d like to showcase another “Mom on a Mission” Nancy Reimer, who is the mastermind behind the very first dedicated NMO (neuromyelitis optica) Walk/Run. It’s difficult not to cry reading her candid response to our very intimate questions. Always honest, sincere and tough, Nancy took time to respond to our questions from her home in British Columbia, Canada.

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1. What motivated you to start the first NMO dedicated walk/run?

I think if I am being completely honest, my motivation for starting the first NMO dedicated Walk/Run was anger and grief. We all have our own ways of dealing with the tough stuff in life and for me I felt like if I did not find a positive outlet for my feelings of anger and grief surrounding Riley’s diagnosis, that I would likely go under and not resurface. It was excruciating as a Mom to go through that first year and to not have a diagnosis really until his fourth relapse. To hear the words “no cure” almost did me in, however, it was around that time that the idea to have an event specific to NMO entered my mind. Organizing this event gave me a positive focus…something that I could do in my own community to raise awareness and funding specifically for Neuromyelitis Optica. When I started planning the event, I was surprised that there were others with the diagnosis who immediately reached out to me. It then became something that extended out much further than Riley’s diagnosis.

2. Were you always planning to make it an annual event?

I remember the final weeks leading up to the first ever event thinking, “what if nobody comes”. Silly really, because so many had registered…we ended up with around 400 that first year. I think my thought process was to just see how year one went…then year two…and now we are leading up to year three! Never in my wildest dreams did I imagine that it would ever go beyond year one. It has become this incredible place of support for those who live with NMO and their families. This event has given us all something that we “CAN” do to make a difference. We cannot change the diagnosis, but we can rally together with our supporters and be there for each other while we educate our communities about NMO.

3. What improvements to the event are you planning for this year?

Each year I look at what worked and what did not. I have to say that both years so far have been pretty darn amazing. Last year we added a few more sponsors, a KidZone and onsite yoga classes. We were also delighted to have a local dance school come and do a flash mob at our event. The onsite Sponsors are incredible and most have been with us since year one. When looking for Sponsors, you are asking people/businesses in the community to believe in both the cause and that your event will succeed. You never know what kind of support exists unless you are willing to ask. So for this year, we have all of our amazing Sponsors coming back, some fantastic post-race entertainment and snacks…don’t forget the snacks!!!!

4. Fundraising certainly has its challenges. What advice would you give to those who do so yearly? How do you keep it relevant and fresh?

Fundraising has been a challenge. I struggled a lot with this aspect of the event last year. Our registration fees are part of our fundraising efforts and that is the easy part, but asking for donations above and beyond has, in the past, been a challenge. When you are asking people or businesses to donate, I have found that most need to have that personal connection to the cause for them to fully be able to identify with it. Unfortunately, many do not identify with Neuromyelitis Optica. Some are willing to listen, while others are not. I have learned to give a brief synopsis of the disease and leave a letter with more details and unfortunately, unless they take the time to read the letter or our personal story, I rarely hear back. That was tough for a few of us last year but then as we started to really look at the event, it occurred to us that maybe that’s not what this event is about. Yes, it is so amazing to be able to contribute financially to the cause and ultimately the cure, but maybe our event serves a different purpose. There is nothing that has been so healing to me as standing before that “sea of green” and seeing that visual support all at once. It is several communities standing together, unified in their support of a cause…our cause. There is not a price tag for that…the support onsite on event day is priceless!!!! To me, if I can provide that for the people who have this diagnosis, then I have done my job well.

5. Riley is another year older so he’s another year wiser. How do you feel this event impacts him on a personal level?

This is a tough one. Riley does not often verbalize what he feels about his diagnosis or about the event. He was only 7 when NMO entered his world and I think for him the event has just become a part of that. Perhaps as he gets older, he will realize more, like I have, the magnitude of the support that stands before him and that this event came to be because he was diagnosed with Neuromyelitis Optica. It was created based on his personal diagnosis. For Riley, life has really normalized in the past couple years. The beginning of May marks 3 years of stability for him. That is huge. I remember the panic of that first year and I wondered if this disease would ever give him a break or if it would be a lifetime of relapses, hospitals and rehab centres. I remember the severity of some of his relapses and wondered if he would live, if he would move, if he would walk again, if he would be able to see…we’ve come a long way baby!!! I am beyond grateful for his stability and he is very blessed to have an amazing team of Doctors that have made it their priority to keep him that way.

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6. To quote the Guthy-Jackson Foundation, you’re another “Mom on a mission”. How do you stay inspired and motivated?

My motivation wakes up in the room across the hall from me every morning. I walk in to see the mop of curls on his pillow. My heart still skips a beat when he does not respond right away. I have learned over the past few years, what it means to be a “Mom on a Mission”. Simply put, a Mom on a Mission is a woman driven by something that puts her child/children in danger, and will fight to the ends of the earth to change that for her child/children. I have had that feisty attitude my whole life and I am learning now to channel it into something good. Both of my children know, without a doubt, that I will always fight for them and will bulldoze anything, Neuromyelitis Optica included, that puts them in danger. The last couple of years have been hard for me. Once I got through that initial flurry of the first year full of attacks, diagnosis and then, finally, stability, I saw the damage…the backlash of the ordeal. The thing is, when you are fighting for a child, your child, you do not feel the plummet to the bottom of the totem pole. I was not a priority and have suffered more than most know, as I have become quite good at just carrying on with life. A car accident in the midst of all of this, just added to that by introducing chronic pain into my body. This year so far has been about healing me. I am, as best as I can, making myself and my own health and recovery, a priority. I still have moments where I plummet, but I never camp there for very long. I have a job to do and in order to do that; I need to be the strongest, healthiest version of me. My motivation now reaches around the globe. My fight is no longer just about my child anymore. It is about every person, anywhere, who has received diagnosis the of Neuromyelitis Optica. We are this amazing family and I honestly do not know how I have lived my life up to this point without these incredible people in my life. I am inspired and motivated daily by the people who were brought into my life through this diagnosis. I am so very proud to be a part of a rare disease family that together will find a cure for Neuromyelitis Optica…I truly believe that!!!!

7. Tell us how people can get involved and all the details of this year’s event.

7. You can get involved in our event by being there if you are able to do so. For those who cannot be physically there, we added a Virtual Participant option to our registration, last year, which allows anyone…anywhere in the world, to register for $10 and support our event and the cause. To symbolize that support, I write all of the virtual participant’s names on my shirt and wear it to the event so it is as if you are there. My goal this year would be to have a really full shirt of names. Our event supports two charities… The UBC NMO Clinic and Research Program and the Guthy-Jackson Charitable Foundation. Donation links to both are available on our family website along with the link to register for our event.
You can visit our website to register, make a donation or view our videos, photos and press from years 1 and 2 of our NMO Walk/Run. nomorenmo.com

Happy Birthday Allen

Happy 3rd Birthday Allen! I can’t believe three years have gone by already. I feel so blessed that I am his mother. Every year around his birthday I can’t help myself to reflect on the journey Eric and I went on to have him. I remember when I was first diagnosed I just cried cause we didn’t know for sure if I could have kids and if I would pass NMO on to them. After seeing some pretty incredible doctors they assured me I could get pregnant and there was a very small chance I could pass NMO onto my children. I am just so happy and blessed Allen is a healthy boy!

 

Allen is quite the character and really building up his personality. I have really seen him grow up this last year. I love how much he can talk now and the stuff he comes up with can always make Eric and I get a good laugh. He is 100% boy; He loves his cars, tractors and trains. His favorite thing to do is tell me he is a racecar and makes racing noises as he runs through the house. Allen is almost 100% potty trained we have been working with him for a month now and he is getting pretty darn good at it. Allen also got a new room and bunk beds this last month. He was pretty excited since I decorated his room in cars for him. He now calls his old room the baby’s room. Allen kind of knows there is a baby coming soon. If you ask him where the baby is he points to my tummy. I know he will be a great big Brother!

 

Can patients living with an illness find love?

It’s Valentine’s Day this week, that overly commercialized “holiday” where we acknowledge our loved one with chocolate, gifts and heart felt (usually by someone else) cards. Love it or hate it, one might find the day difficult to ignore.

On occasion I scan the posts on the support sites and Facebook groups and every once in awhile I’ll see the gut-wrenching, heart-sinking comment from someone young who wonders if they’ll ever find love despite Neuromyelitis Optica (NMO).

I’m here to say YES! YES YOU CAN!!

I’m blessed, in fact all of us on this blog are, to have someone to share our lives with. That’s the good, the bad and yes, the ugly NMO.

Look, Valentine’s Day can make even the most beautiful, healthy, young man or woman feel self-conscious when they face the day alone and single – so don’t sweat it. The tough reality about NMO is that everything is, well, in fact tougher.
Be it cooking, walking, sleeping and even love and romance, we face hardships most will never understand. In truth, there isn’t really a good moment to tell someone you’re dating about the realities of an auto-immune disease. It’s not exactly first date conversation material…or second date…or third…The good news? Dating is tough for everyone and each person brings what some might refer to as “baggage”. I like to refer to it as being human, vulnerable and real. I like that no one is perfect.

I always wonder what it is about disease that makes people feel lesser than others. Are NMO patients of a lesser value human being than anyone else? We certainly contribute the same (and often more!) to society through our work, families and empathy to others.

So go ahead and put yourself out there. And if you choose not to do so because you’re happier alone and not because NMO stopped you.

(In full disclaimer I personally have come to adore Valentine’s Day because of discount chocolates the day after and my hopeless idealistic view of the world.)

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:

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And this:

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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.

 

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What to tell our children about NMO?

Despite this blog, I’m a very private person. I go about my day without anyone really knowing the pain I’m in. I rarely (closer to never) complain and most of my family and friends forget that I suffer from Neuromyelitis Optica (NMO). But truthfully, some days aren’t good. On my “bad days” I tend to go into hiding, I work from home, I sadly cancel on social outings. I’m okay with that now. My husband is the closest who gets it (as best as any non-patient could), watching me in quiet agony sometimes and I’m sure overhearing my private pep talks to push through the day. And now my daughter is also privy to my suffering.

So how much do I tell her?

My daughter is 2 and a half now. As a mother I’ll do anything to protect her from the realities of this world. I don’t want her to know pain, sadness, disappointment for as long as I can. She’s growing up so fast and I’m often disgusted how quickly our world wants our children to mature. Don’t get me wrong – I don’t want to raise an ignorant, immature brat, but I do want her to enjoy being a princess, blowing bubbles in her milk and laughing at funny faces we make because she (and every child) deserves that.

On my bad days she’s seen me struggle a little bit. On those days I know a look she has on her face, that is a mix of understanding I’m not my usual energetic self with a lot of worry that something isn’t just right. It’s that look that breaks my heart. It makes me worry about that inevitable day, the one when another major attack happens, because it will, and we’ll have to figure out a way to explain it. I’m not pessimistic but a realist who thinks we should be as best prepared as we can be.

I don’t know if this is the right answer (like all parenting conundrums) but when she’s old enough or when I’m forced to find a way to explain it, I will tell her my harsh reality. And that’s ok because I want her to understand that sometimes bad things happen to good people and strong people can have weaknesses. What I have resolved so far is this – NMO will be my battle, not hers. I hope for a cure one day but if things become more challenging as we both age I’ll want her to go and live her life  and not become my caregiver. I hope I raise her well that she’ll want to be but of course, I won’t let her. I know I’ll potentially get some grief about this; there are a lot of families that believe one should take care of their elderly, and yes, there’s a certain sweetness and sense of responsibility I respect about that value. But I hope for my daughter to be braver than me, stronger, smarter, healthier than me and I want her to take that and be impactful to our world, not just impactful to me. 

16
Dec 2014
POSTED BY Jenna
POSTED IN

Family, NMO, Uncategorized

DISCUSSION 1 Comment

Should NMO patients get the flu shot?

Getting the flu shot is a personal choice. What do I mean by that? As a neuromyeltis optica (NMO) patient I’ve never received a concrete answer as to whether the merits of said flu shot outweigh any potential risks. So that’s what makes it a personal choice; that it is completely up to me to take what little information is available and make a somewhat educated decision. Let me take a step back…

I trust my team of doctors. Since my first attack I’ve always been treated with respect, have had the opportunity to voice my concerns and have always received honest answers. And I’m grateful because I know some patients don’t share my opinion about their healthcare, some even sharing the same team of doctors. Every year I have this discussion and every year there’s still not enough evidence. My neurologist is unsure how my symptoms will react, my general physician sees no harm and my rheumatologist strongly disagrees with the shot for those with compromised immune systems. They all make strong arguments and again, I emphasize, I trust them. I also respect them so much more for just being honest and saying, ‘collectively, we don’t know what the answer is for sure’.

So every year I choose not to get the flu shot. Truthfully, I’m tired of all the drugs in my system so one less excites me.  And I hate needles so if I can avoid one I typically do. But last year my daughter, then a year and a half, came home sick from daycare so often I coined the phrase, “sick diet”, which I attribute to my post-baby weight loss. This year started no different. As soon as the leaves started to change my daughter came home with a cold and I in turn caught it, which became a week long body shutdown. Not wanting to be sick for most of the winter again this year, I opted to try the flu shot finally. On a routine check up with my general physician he suggested the flu shot, which was available right then if I wanted it. It was 8am on a Monday morning prior to a hectic week of work. Sure, some patients feel a little unwell but we guessed the worse I’d feel is a sore arm at the injection site. I have after all, been taking good care of myself, working out regularly, eating and sleeping. As the fluid entered my arm I instantly felt unwell. I started to sweat, developed a headache and my body ached. And the NMO burning…the burning…And just as the nurse put the bandaid on the nausea hit me like the worst stomach bug I’ve ever had. Thankfully a waste bucket was in the room and my modest breakfast found itself in it. Thinking I could just push through my day I headed to my office but within the hour it was evident I had the full blown flu. It took me another week to recover from that teeny, tiny needle. 

I want to put out my disclaimer here: this experience is by no means my opinion that NMO patients shouldn’t get the flu shot. I also want to make it clear that the reaction I had could also have happened to any other person who doesn’t have NMO. I’ve had one bad experience with the flu shot and that’s not enough evidence to determine a pro or against stance. 

If you’re like me and unsure about the flu shot don’t wait until mid season before you make a decision. If you decide against it, encourage your family members close to you to get theirs. Also, I want to reiterate that every NMO patient is different so always consult with your team of doctors.

#TOUGHLIKEME

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.

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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.

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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.

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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.

 

 

13
Oct 2014
POSTED BY Erin
DISCUSSION No Comments
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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

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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.

19
Aug 2014
POSTED BY Christine
DISCUSSION 1 Comment