Visual Cues

Like most little kids, my daughter loves to play in my closet. When left to her own devices, Sophie can be found putting her tiny feet into my high heels, dragging my scarves through her bedroom and dressing her dolls in my t-shirts. Last week she emerged with my cane, which was buried deep at the back of my walk-in closet, and I instantly cringed. Although it was 5 years ago, the mere sight of the walking aid brought me back to my most vulnerable time.

I’m one of the lucky ones and that’s a weird thing to say because neuromyeltis optica (NMO) doesn’t go away. There was a time I was told I’d probably never walk again, and then that I’d probably never walk properly again, and then that I got lucky…this time. It’s the “this time” part that made me stash the cane at the back of my closet. I’m a realist now and I’ve made my peace with the inevitable that one day I’ll need the cane once more, but I’ve been quite content, thank you very much, to move on with my life in ignorant bliss. Out of sight, out of mind until my pre-schooler decided it would make an excellent toy for the afternoon.

I know a lot of NMO patients can relate to how their wardrobe makes them feel. When on prednisone (steroids) most of us gain weight, and some of us even get the ‘moon face’. On one particular outing a stranger asked me when I was due and I lied and said, “soon” to avoid the uncomfortable truth. I remember coming home, grabbing several garbage bags and donating all of my thin clothes. Hundreds, if not thousands, of dollars worth of clothing, were given away that day. And although I’ve now endured several rounds of prednisone I’m more at peace with my wardrobe that “this too will pass” and subsequently divide my closet into “skinny Jenna” clothes and “Jenna-zilla” clothes.

It’s funny how a phrase, a song, the sight of an object can instantly bring us back to a moment in our lives.

01
Jul 2015
POSTED BY Jenna
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NMO TV

We hope you’re all enjoying the warmer weather and if not, do what you need to stay cool and keep symptoms away. If you’re staying indoors, now is the time to take a look at Guthy-Jackson’s new NMO TV here:

 

http://www.guthyjacksonfoundation.org/nmo-tv/

 

Happy summer!

23
Jun 2015
POSTED BY Jenna
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Guide Dogs for the Blind: Should I get one?

In my latest Blind Life episode, I visit Guide Dogs for the Blind in San Rafael, California, where adorable puppies are born, raised, trained, and matched with visually impaired human partners. Erin, Jenna, Lelainia, and I all have canine companions, but all of ours are pets and not service dogs. I’m the one with the most impaired vision, and yes, I’ve considered getting a guide dog. This is why, when invited to the GDB to both visit and host an intimate, private dinner to help raise funds for the program, I jumped at the opportunity. I wanted to know, what’s it like to work with a guide dog?

Here are some things to consider when it comes to guide dogs:


  1. How often will I need the aid of a guide dog? That is, how often will I leave my home on my own? Guide dogs are energetic and eager to work, so your lifestyle and schedule should get you out of the house often. Use it or lose it, you know? Currently, I work mostly from home with the occasional sporadic travel. There are times, though, where I rarely leave the house during the week. When I was in grad school, I went to campus a few times a week, so having a guide dog then would’ve made more sense than it does now.
  2. Am I a dog person? This question might be a catch-22: you may not be a dog person, and then once you get a guide dog, you may become one. It’s a no-brainer if you love dogs, but even if you don’t, are you open to them? These guide dogs will be your companion until death do you part—are you ready for that sort of union? If you’re allergic to dog hair, I believe there’s a niche program out there providing hypoallergenic dogs. This population (blind individuals who want a guide dog but who are allergic) is so small, though, that it may be hard to get placed with a furry companion. You might have to consider alternatives (seeing eye bird anyone? Just kidding).
  3. Am I willing to put in the effort to be trained myself? I used to think getting a guide dog meant I applied for one, and then a cute, intelligent puppy would show up on my doorstep the next week. Wrong! We humans need to be trained, too. Your dog will not automatically know how to get to the Gap as soon as you get dropped off at the mall (unless, of course, you work at the Gap and have taught Fido the route from bus stop to storefront before). Guide Dogs for the Blind invite their new consumers to their campus in California to meet their new guide dogs and spend a couple of weeks doing “in-house” training. This means living short-term on campus with your dog, building trust between the two of you, and acquiring the skill set to work with the dog (I.e. How to care for her, how to teach him new routes, how to give positive reinforcement, etc.). You’ll have to take a short break from your daily life to come learn: are you willing to leave your family, work, and the comforts of your own home for a little while? Moreover, are you willing to put in the effort to become the best owner you can be? These dogs, their instructors, and their caregivers have put a lot of work into getting the pups ready for you. It’s your turn to uphold your end of the deal.

I’ve never had a guide dog myself, but maybe one day, I will. Guide dogs offer safety, protection, and companionship. Their intelligence and loyalty blow my mind: just take a look at this recent story about a guide dog putting itself in between its owner and a bus to protect her.

15
Jun 2015
POSTED BY Christine
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Rituxan vs. Breastfeeding

I wanted to talk about the difference between when I had Allen compared to when I had Alana. I have had a very different experience with my NMO with each kid after I gave birth. After I had Allen I had to make sure I did Rituxan within 8 hours after childbirth. So needless to say I did not get much time with him after he was delivered. I had to go to a completely different floor to get my Rituxan since it’s a chemotherapy drug I had to be moved to the cancer floor. It took over 12 hours for them to infuse the Rituxan the nurse ran it very slow since I just gave birth. That was very hard for me as being a first time mom being away from my son for over 12 hours. By doing the Rituxan so quickly after childbirth my doctors were hoping it would help really decrease my chance having a relapse. After the first infusion I would have to do another round of Rituxan 2 weeks later at my doctors office. About week after my second round of Rituxan my NMO symptoms came back very badly. I started back on my daily symptom pills and was hoping for the best. About 9 months later I had a relapse ended up in the hospital to do PLEX. Within a month I had another Relapse ended back in the hospital for another round of PLEX. I was good for about 4 months when another relapse occurred and was admitted to the hospital again for another round of PLEX. After having Allen I really battle with my NMO even though I did my Rituxan very quickly it didn’t seem like it worked very well.

 

When I decided to have another baby this time I really wanted not to do Rituxan right after childbirth and try to breastfeed. Hoping that would maybe help prevent having a relapse. I had Alana 3 months ago and I am doing fairly well! Breastfeeding has been a challenge but I am hanging in there! My NMO symptoms are mild right now about a week ago they started coming back. The one symptom I am battling is horrible headaches, I went in for a nerve block and I hope it will work. I will honestly say I feel so much better breastfeeding vs doing Rituxan. My doctor is giving me till September to breastfeed then I will have to do Rituxan. I am hoping I will make it that long! I am being closely monitored by the doctors to make sure I do not flare. I go in every couple weeks to get my blood work checked, to make sure my levels are absolute. My whole family can’t believe so far how well I am doing with my NMO since having Alana. I am truly hoping this time I stay relapse free for awhile.

All In

 

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NMO family, Rocky Point, BC, Canada. May 2012.

So…it started with excruciating pain in my left index finger. I’d inadvertently bump my finger and a lightning bolt of pain would shoot right through it, leaving me on the verge of wanting to vomit. I couldn’t bend my finger to make a fist. Then I developed pain in my left thumb on the crease in the palm of my hand. It hurt to try and fold my thumb towards the palm. Eventually, the pain made it impossible to grasp and carry something as simple as a coffee mug. This might not have been such a big deal if I were right handed, but as someone who is ambidextrous, there are certain tasks my left hand does, not to mention I’m an artist who works with her hands. It’s been both painful and frustrating.

I was cooking pancakes one morning and suddenly the room tilted at a 45 degree angle. WOAH! That’s not right. It stayed that way for a good 5 minutes, so I hung onto the counter and kept cooking while I waited it out. When it was over, I mentioned it to my husband. I have had several episodes of what I like to refer to as “drunken sailor” since then. Fun times!

Now my left leg has developed pins and needles. I was adaptive dragon boating the other day and when it came time to get out of the boat, I couldn’t stand up. I ended up kneeling on the dock till I could wake my leg up enough to finally stand up. Since then, I am walking stiff legged. I’ve lost power in that leg and there are times where I feel unsteady on my feet and disoriented. My proprioception (knowing where my body is in space) seems to have gotten worse. Last Wednesday, my physiatrist (a rehabilitation physician who is a nerve, muscle and bone expert who treats injuries or illnesses that affect how you move) absolutely insisted I get a cane. I was not ready for that. Not by a long shot.

This is just a small snapshot of what goes on in the life of someone living with NMO. This rare disease manifests is so many ways, all of them devastating and destructive. Every day we deal with the fall out of our bodies betraying us. Every day is a battle most people know nothing about.

This Sunday is the third annual NMO 5 km walk/run/roll at Rocky Point in beautiful Port Moody, British Columbia Canada. It’s the only event like this in the world, dedicated specifically to NMO. I will be there, along with my fellow NMOers, allies and local researchers and clinicians raising money and awareness for this terrible, relentless disease.

If you can, please come join us-it’s not too late! We would deeply appreciate your presence. It gives us strength to know we are not alone. If you are unable to be there in person, please consider participating as a virtual participant. Nancy, our walk founder and NMO mum will write your name on her shirt and you will be with us in spirit. You can also choose to make a donation-every single dollar will make a difference. Click here to donate directly to the UBC/VGH Hospital Foundation or click here to donate directly to the Guthy-Jackson Charitable Foundation. (You can make a note that it’s for the NMO walk.)

We are all in. Please join us.

01
Jun 2015
POSTED BY Lelainia Lloyd
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I have NMO. Now what am I supposed to eat?

If you’re like me you probably enjoy the occasional over-indulgence of food and usually the bad stuff. Growing up Dutch-Indonesian our meals often revolved around rice dishes, cooking oils and spices. I’ll admit that food, especially the quality of food, is usually the last thing on my mind. I’m not a poor eater but I am guilty of sporadic meal times, missing meals and binge eating. Having a child corrects some of my poor habits but as long as she’s eaten well and regularly I’m ok.

Since my NMO diagnosis several years ago I’ve really battled with food. Prednisone made me over-eat and the weight gain pulled me into a dark depression. I lost most of the weight only to pack it all back on when I was pregnant and then lose it all again. Over time I’ve read a lot of studies, testimonials and books on how diet can resist or improve neurological symptoms.

But I was overwhelmed.

It seemed like the more I read the more confused I became. Some argue a vegan diet while others argue gluten-free or soy-free. Scared of falling into a trap of another fad diet, I spoke with my doctors who all said the same thing – “everything in moderation.” A couple of summers ago I challenged myself to go vegetarian for 2 months, really just to force myself how to cook differently. What I found was that my body felt better, cleaner and more capable of handling the NMO symptoms. But I love steak too much…

So here we are at present. After more research and coaching from family members who also struggle with disease I’ve now spent the last month on the Paleo autoimmune protocol (AIP) diet. It’s restrictive, tough and unforgiving. The goal is to rid your body of all possible inflammatory foods then slowly introduce them back into your diet one at a time to identify which ones cause havoc on your body. My cousin best describes the feeling of Paleo AIP – “it is so powerful to use food and find control again of your body after so long”. Now, I’m not saying that I will ever be able to stop my regular meds and that my symptoms all magically went away BUT after the first week I already felt better.

I’ve just started introducing rice into my diet and so far there is a limit before I feel bloated and sick. I’m playing around with portions and I’m hoping that will make rice more tolerable. I don’t know if full on Paleo is my solution or even feasible but I know I’ve made a huge mindset change that will stay with me forever.

My gallery of Pinterest fails:

This is supposed to be the meat patties that provide my protein in the morning. They never turn out looking like perfect circle hamburger patties.

 

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Instead they turned out looking like burnt hockey pucks (but they still tasted really good).

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Desperate for sugar (I went into complete withdrawal after 2 days) I attempted to make beautiful coconut flour pancakes. They tasted horrible, like dry flour and no amount of maple syrup was making these better.

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This wasn’t a fail per se but I did miss potatoes. My family really enjoyed this roast.

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How to Look, Feel, and Be Young in Spite of NMO

**This post was originally published on The Blind Cook and has been slightly edited for this blog.

I turned 36 recently. I still consider 36 mid-thirties, but my husband, John, likes to annoy me and say I’m in my upper thirties now. When I was young, 36 sounded so grown-up. Now that I’m actually a grown-up, I don’t feel much like an adult at all. Example: I still shudder when someone refers to me or my girlfriends as women.

“You mean us girls?” I’d say.

At family weddings, I’ll ask, “Where’s the kids table?” because I still classify myself separately from the adults/parents.

Age is often a state of mind. I’m happier now than I was in my twenties because I am more grounded and self aware. Even so, aging does concern me. I actually think I might be better off blind since I’ll never know how many wrinkles have formed. The downside is if I miraculously regain vision one day, I’m in for a total shocker.

Having Neuromyelitis Optica or NMO makes growing older even more bittersweet: a part of you is just happy to make it another day, but the idea of the unknown future of your health can be scary. Because I want to be youthful and healthy as long as possible, there are a few rules to life I follow. In order to refrain from cliche and repetition of my tips for a healthier, happier life, I’m instead going to give you a list of perhaps trivial and inconsequential advice based on my own personal experiences. Heed some, heed none—just let these spark ideas and guide you to your own rules.

3 Things I Do to Stay, Feel, Be Young in Spite of NMO

1. Love my skin.

When I was a teenager, as many southern Californians do, I worshiped the sun. I spent two years of high school in L.A., and I would occasionally skip school for the beach. During the summer, our family drove down to Mexico and camped on the beach. This meant days of being in the scorching Mexican sun from sunrise to sunset with only a tent to shield us from the harsh rays. I was an idiot on one of these trips and only donned tanning oil of SPF 2 the entire time. When I returned home, I was so burnt, I could barely pull my shorts down to use the restroom. Such a dummy.

I’m told I have freckles on my cheeks now, and I’m pretty sure they’re a direct result of all the tanning I used to do. I still love the sun, laying out at the pool, and beach vacations, but now I’m ultra paranoid about my face.

We’ve all heard the sun causes premature aging, so now I wear at least SPF 30 on my face daily, and if I’m going to be outside for an extended period of time, such as when I’m at the beach or a music festival, I slather on the sunblock multiple times and don a hat and shades. (Yes, even though I can’t see, my eyes are still very sensitive to light—even more so now than before when I had vision.) One time, I was even told I looked like a geisha because my face was so white from the sunblock, but I didn’t care. Better a geisha than an old piece of leather.

My mama taught me the importance of skin care when I was young, and I’m sure if she’d still been alive when I was a sun-loving teenager, she would’ve flipped, so I’ve been cleansing, toning, and moisturizing my face since I was 12. Many say I have pretty good skin for my age, and while a majority of it is likely due to genetics, I’m sure a substantial part of it is because I’ve taken care of my skin with a daily regimen for decades.

Now that I’m in my thirties, I’ve added serums and eye creams to my routine. Your skin will be more prone to redness in your thirties, and then wrinkles in your forties—yikes!—which means I’ll be adding some anti-wrinkle solutions to my regimen soon, too.

Some of the products I use are expensive, others are affordable drugstore brands. I would say don’t worry so much about brands, but rather, make sure you’re consistent. Personally, I use a mild cleanser, moisturizer, and SPF in the AM, and remove all makeup, cleanse, tone, apply serum, eye cream, and moisturizer before bed. I exfoliate at least once a week and apply moisturizing masks after stints of travel. And don’t forget the neck and décolletage! Many don’t realize the skin on their neck and upper chest is the same kind of skin on the face, so these areas need to be treated with the same respect.

I understand not everyone can be bothered by such a skin regimen, so for those minimalists, I say, at the very least, use SPF and cleanse.

2. Laugh a lot.

Even if after reading #1 has made you deathly afraid of wrinkles, smile lines are still a thousand times better than frown lines.

I believe humor is vital to life’s survival. Lots of situations and circumstances suck. And while laughing at hardships won’t make them go away, it will eventually make them better, or at least your perspective of them will improve.

One of my professors in grad school said something that I will always remember: “Marry someone with whom you can carry a conversation.” I’d also follow that up with, “Marry someone who makes you laugh.” Because, in spite of heeding advice #1, we’ll still get old and wrinkly, and physical attraction is fleeting. Emotions are ephemeral, too, so life partnerships and marriages shouldn’t be based on passion alone.

It feels so good to share in laughter. Laughter and humor will always keep you feeling young at heart.

3. De-stress frequently and without guilt.

The root cause of many autoimmune diseases is stress and one’s inability to deal with it in a healthy way. I learned after the long phase of getting diagnosed with NMO that sometimes, we need to take a break from life and concentrate on ourselves. If you’re not happy and healthy, your family, friends, and coworkers won’t be either.

De-stressing could mean many things to many people. For me, de-stressing includes yoga, reading, watching TV, massages, spa treatments, walks, naps, a beer, or rocking out to music. Sometimes these involve other people, sometimes not. I’m naturally an introvert, so I need alone time to recharge.

Do something small every day to de-stress: shower or bathe, read, take a walk. Each week, do something a little more for yourself to de-stress: have some wine, watch a movie, hang out with a friend. Do something bigger every month: get a massage, work on a painting or poem, go on a kids-free date with your partner. Then splurge to de-stress at least once a year: go on vacation!

Everyone’s different. Find what works for you, so long as it reenergizes you so you can be at your best in life. You deserve it.

18
May 2015
POSTED BY Christine
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Alana Joyce Miller

I wanted to let everyone know that Alana and I are doing well. Everything went well with the delivery i had her via c-section. we were in the hospital fir four days. My NMO has been doing pretty well. I am currently breast feeding so maybe thats why i am still doing ok with the disease. I am staying very busy with Allen and her, I am still trying to get in a rhythm. I made a video of her photos from since she has been born.

 

 

 

 

11
May 2015
POSTED BY Erin
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The Blur That Was April

The mountain of boxes. All unpacked now, thankfully!

The mountain of boxes. All unpacked now, thankfully!

Life has been super busy since I got back from LA NMO Patient day. For one thing, we had a rather unexpected move. I had 3 weeks to purge and pack up our home which was no mean feat with a fractured rib. I am forever grateful to our son and my husband’s coworkers-big burly men who work in construction who came and helped with all the heavy lifting. We are mostly unpacked and settled in our new home and loving it. We now live on a greenbelt which is really pretty and quiet-it’s like living in a park. The neighbours are friendly and welcoming and just about everyone here has at least one dog, so Indy, our black Lab is right at home. mydragonboating I joined an MS/NMO adaptive paddling group, so twice a month, my husband and I go out dragon boating on Burrard Inlet which is five minutes from home. (I am the token NMOer.)  I am taking things slowly, since my rib is still healing.  So far it’s been fun getting out on the water and seeing the wild life. The first night we went out, we saw 25 sea lions on a log boom. They were just hanging out. Then these little heads popped up- there were half a dozen babies the size of well-fed house cats! It was really cool to see them up close in the wild like that. I got a dry bag for my iphone so next time we see them I can get photos.  On Friday night while we were standing on the dock, I saw an eagle fly over us with a fish in its talons.

At the summit.

At the summit.

Last Sunday my son and I went to experience the Sea to Sky Gondola. I have been dying to go. The tram ride up is about 12 minutes and the view was amazing. We did some hiking up top. I took my DSLR with me and my son and I kept passing it back and forth. We enjoy doing photography together. There are two glaciers you can see from the summit that are just spectacular. I love that in an hour I can be in the mountains. Being in the mountains is my happy place-it’s the place I feel most alive.

My Nursing student, my Medical student, Me, my Masters Student. Missing is my OT Student. NMO content was hidden behind us, but it IS there!

My Nursing student, My Medical student, Me, My Masters Student. Missing is my OT Student. NMO content was hidden behind us, but it IS there!

Wednesday night, was the annual UBC Interprofessional Health Mentors Symposium. This is the program where I work with future health care providers for 16 months, teaching them about patient-centred care. On Symposium night, they have the opportunity to share their learning with the other groups. This year my students created a Jeopardy game and we gave out NMO branded prizes and chocolate. Our board was super busy and we made sure everyone who visited us went away with NMO flyers. It was a great opportunity to connect and help raise awareness. I think part of our popularity is the fact that rare=interesting.

The top piece I chose because it's the type of mixed media collage work I do. The middle (large frame) is a piece of work that was published in a book and the bottom piece (my fist) is a selfie I created about advocacy & activism.

The top piece I chose because it’s the type of mixed media collage work I do. The middle (large frame) is a piece of work that was published in a book and the bottom piece (my fist) is a selfie I created about advocacy & activism.

On Thursday, the MS Society BC-Yukon Division held an MS/NMO art show that I submitted work to. It was really wonderful to see all the amazing talent we have in our division. The reception was lovely and the turnout was really great. At one point, I was standing by my art so a friend could take a photo and these two women came up to take a look. I heard one of them comment on the “longitudinal lesion” she saw which was a picture of one of my actual MRIs that was included in my art piece. So I said to her “Yes and that’s actually an NMO lesion, not an MS lesion.” They both got very excited about that because as it turns out, they were researchers from UBC’s clinic. I was really impressed that MS/NMO scientists had shown up to the art show! Rounding out the week, this past Sunday, I did a phone interview about NMO for the MS Society’s Lower Mainland Chapter newsletter. It should be coming out in the next issue. I talked about living with NMO, the NMO 5 km Walk, Run, Roll that is coming up in June, Patient Day in LA, the Guthy-Jackson Foundation and NMO Diaries. I really don’t know how long the article will be, but I gave Dorit, who is writing the article lots of food for thought. So…I am hoping May is a little bit less hectic. I had TWELVE medical appointments on top of everything else this month and I need a break. I have some art projects in progress and I actually need to have time at home to work on them. (Go figure!)

27
Apr 2015
POSTED BY Lelainia Lloyd
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NMO and Pregnancy – A Patient’s Perspective

Both Erin and I have had successful pregnancies so we’re often asked how exactly we’ve done it. Truth is, no one really knows how we got so lucky (as we all know NMO is so unpredictable) but we did work with a great team of doctors, understood what we were getting into and built a plan that we think helped us stay on track.

Here’s our disclaimer: we are not doctors or ever think our opinion is superior. Pregnancy and NMO is not for everyone. This documentation is meant to provide insight into our journey and what we learned along the way. It’s meant as an external resource for those with Neuromyelitis Optica (NMO) who are considering pregnancy.

Q: I have NMO. Can I get pregnant?
A: Maybe. The reality is that there just aren’t enough documented cases of patients with NMO and pregnancy. There have been some successful cases, like ours and there have been some unsuccessful cases that have resulted in miscarriages and major NMO attacks.

Q: When is the best time for us to try getting pregnant?
A: Ideally you want as much time between your last attack and when you become pregnant. The longer time you provide your body with stability, the better. Our doctors recommended we wait several years before we even started the conversation about pregnancy. This is a conversation that should include your entire team of health care providers.

Q: I’m on a lot of medications. Are they safe for a pregnancy?
A: All immune suppressant medication, including Cellcept, Rituximab, and Imuran are classified as unsafe for pregnancy. Logically speaking, these drugs are meant to slow down an immune system, which doesn’t make sense for an unborn child who is developing an immune system inside you. There are several programs often affiliated with your local hospital that will help you determine which drugs are safer than others for use during a pregnancy, but remember, no drug is 100% safe during a pregnancy.

Q: But if I come off my medication won’t I suffer from another major attack?
A: Possibly. Ideally you want to wean off all unsafe medication (like immune suppressant drugs) and ramp up a suitable substitute (like prednisone) to provide you with some protection while you are pregnant. Only you can determine if you’re willing to take this risk with your body.

Q: Can I still try to get pregnant the good old fashion way?
A: You could but ideally you want to minimize the amount of time you are without the best treatment to protect you from another NMO attack. That’s why both of us decided to pursue in-vitro fertilization (IVF). That way we were able to time exactly when the unacceptable drugs were out of our system with a close date to when we would ideally be pregnant. Talk to your doctors to see if IVF is an option for you.

Q: What happens if I have an attack during my pregnancy?
A: This is something you’ll need to discuss as part of your plan and is very personal to you and your family. You’ll want to discuss your wishes with your team of doctors beforehand so everyone knows what you want should you experience an NMO attack during your pregnancy.

Q: Who should follow me medically while I am pregnant?
A: You’ll want to continue working with your existing medical team as they’ll be familiar with your history but you’ll also want to consider a high-risk obstetrician as some medication, like prednisone, can create additional problems like gestational diabetes, during your pregnancy.

Q: I’m worried about the delivery. Are there special considerations for patients with NMO?
A: It will depend on your wishes and what recommendations your team of doctors will make. Typically, if you’ve had a transverse myelitis (TM) attack you may want to consider a c-section to eliminate any extra pressure on your spine during delivery. Make sure you meet with your anesthesiologist beforehand to identify where the problem areas exist on your spine should you need or choose to get an epidural.

Q: My doctor wants me on my medication right after delivery but I really want to breastfeed. Can it be done?
A: It will depend how your pregnancy goes. If things go well you might have the option to delay your previous course of medication long enough to breastfeed for a period of time. Voice this desire with your doctors to build it into your plan. If you suffer from extreme symptoms or worse, an attack, during your pregnancy you’ll likely want to pursue the best treatment plan available as soon as possible so you can make sure you’re there for your new addition to your family. From our perspective we both chose to breastfeed for as long as it was safely recommended by our doctors – aside from all the regular benefits of breastfeeding, it also helped prolong the feeling of pregnancy for our bodies and allowed for a slower transition from pregnant to not pregnant, providing the opportunity to adjust.

Q: I’m worried I’ll gain a lot of weight during my pregnancy and will struggle to lose it once I start my treatment plan post-pregnancy. 
A: Like all new moms weight loss post pregnancy is a challenge. Build it into your plan to work with a nutritionist and set realistic goals knowing that movement isn’t always the easiest for NMO patients.

Q: Having NMO is already an emotional roller coaster. Can I handle a pregnancy?
A: Only you can answer that. Don’t get pressured into a pregnancy if you aren’t sure you can emotionally handle the unknowns and/or if you do not think your body can handle such physical changes. Be sure to have a positive support system available during the planning process, your pregnancy and available to assist post pregnancy. Be sure you talk through and agree on a plan for worse case scenarios.