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.

Erin’s Pregnancy update

2nd Pregnancy

I wanted to give an update on my pregnancy so far. I am now over the half waypoint and starting to feel good! I am over the morning sickness and not so tired anymore. My NMO symptoms all have disappeared! I am still going once a month to my Neurologist getting my blood levels checked, so far so good. You can tell I am defiantly pregnant my belly is showing. I am showing a lot quicker this time about a month sooner this go around. On October 15th we found out that we are having a girl and she is right on track.

 

Keeping up with Allen is hard some days I still get some pregnancy fatigue. Allen does not want a sibling he would rather have a puppy. If you ask him if he wants a brother or a sister? He will shake his finger and say “No No”. But if you ask him if he wants a puppy he lights up and says “Puppy”! Allen has realized also I have a baby in my tummy he will now and then run up to me and point to my tummy and say “Baby”.

 

I just keep praying everything is going to be ok and baby girl Miller is going to be healthy. Here soon we will be talking to the doctors about how I would like to deliver and get everyone on the same page. I go in this Friday for another long ultrasound to make sure she is developing all her organs properly. After the holidays we will be working on her nursery. I will do another update here in a few months.

 

 

10
Nov 2014
POSTED BY Erin
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Catching Up!

Filming at UBC

Filming at UBC

It’s been a pretty busy month since I last posted. Since my last post, I did some filming for a new medical course that has been in development at the University of British Columbia called the Certificate in Collaborative Practice for Health Professionals. This new course is designed to help health care professionals strengthen communication and collaboration skills in order to enhance patient-centred care. I have been serving on an advisory committee, along with several of my fellow Health Mentors over the last year. The work has been both challenging and interesting. What I’ve loved best about it is that I know that the work we are doing is going to have a very positive impact on how health care is delivered in our province. It’s been a real privilege to be able to contribute to this program in such a meaningful way. Our work is now shifting to ethics, which I am sure will be equally interesting. The video component of the course is currently in editing and I can’t wait to see the final cut!

Last week was UBC’s annual Allies in Health Community & Patient Fair. I spoke on a panel about my experiences in the health care system which included what it;s been like getting a diagnosis and treatment for a chronic illness and the difficulties I’ve faced. The Canadian MS Society, (which has taken Canadian NMO and ADEM patients under their wing) had a booth set up and was handing out information on MS and NMO. I also had a stack of pamphlets from Guthy-Jackson that I handed out to those who attended the panel. This is the second year I’ve spoken on a panel at this event and it’s always a wonderful opportunity to raise awareness for NMO.

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On Saturday, November 1st, I attended the UBC NMO Patient Information Day. There were a number of topics covered, including Patient Experiences, Pediatric NMO, Sexual Health, Pain Symptom Management, Current & Future Disease Modification Therapies for NMO, an update on the NMO Walk/Run and an update from the MS Society. As you can see, the day was jam packed! I think there were about 100 people in attendance.

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The most exciting thing to come out of the day was that in Canada we are, as of THIS WEEK able to finally join the CIRCLES* Studies. The ability for NMO patients to give blood for the bio-repository has been in place for quite some time in the US, but because Canada has different rules and ethics around a study like this, Canadian NMO patients have had to wait while all the red tape was dealt with. Well, that wait is over- UBC will begin enrolling interested patients in the study this week!

The other really important thing that was discussed was a petition that has been started, urging the provincial government to approve and fund Rituximab for NMO patients. Currently, Canadian NMO patients can sometimes get compassionate coverage of about $3000 towards the cost of the drug, but the remaining balance (which is substantial) must come from the patient or via third party insurance. The cost is prohibitive for most patients. Our local NMO clinic is arranging to have this petition available online and to extend the request to include that the federal government approve coverage Canada-wide. As soon as I hear that the online petition is available, I will be sure to post the link here.

For those of you who are interested, I managed to live tweet from the conference and you can review those tweets on Twitter, by searching the hashtag #UBCNMOday . I know there were several people from the NMO community following along and I was pleased to be able to help include you in the day’s events in this way. Technology is so wonderful for helping our community stay connected!

The next big thing coming up for me is the Grey Cup. For those of you in the US, who might not be familiar, it’s kind of like the Super Bowl, minus the crazy commercials. Vancouver is hosting this year. Two years ago, we hosted the 99th Grey Cup and I had such a good time volunteering, I decided to do it again. I’ll be reprising my role as a VIP Transportation Dispatcher and running a fleet of about 30 cars for the 6 days of festivities. I can’t wait! Here’s hoping our Lions get through the semi-finals!

 

*The Collaborative International Research in Clinical and Longitudinal Experience for Neuromyelitis Optica (NMO) Studies. This work is funded by the Guthy-Jackson Charitable Foundation for NMO research.

03
Nov 2014
POSTED BY Lelainia Lloyd
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Let’s Celebrate the Pumpkin

Homemade pumpkin bread

Homemade pumpkin bread

This Friday is Halloween, and instead of stuffing your face with processed sugars from the ever gross-looking corn candy, why not eye your jack-o’-lantern and turn it into a healthy snack?

Okay, realistically, I love certain candies—dark chocolate, gummy candies, M&Ms, Reese’s peanut butter cups, and Kit-Kats are among my favorite—and I used to always have a bag of something in the pantry or freezer (if it’s chocolate) to satisfy my nibbling cravings. But let’s face it: I’m not getting any younger (and probably not much healthier), so I try to refrain from those addictive yet oh-so-joyous sweets. (I do, however, currently have a bag of Ghirardelli dark chocolate in my house and only allow myself, at most, one piece a day.)

Another realistic fact to consider is the pumpkin from which you carved that scary or goofy face is not the kind of pumpkin you’d normally ingest; the jack-o’-lantern pumpkins you see stacked high outside the supermarket are a different species from the sugar pumpkins better suited for eating. These are usually found within the produce section of a grocery store during autumn when fall squash and gourds are in season.

Here are some health benefits of pumpkin*:


  1. Contains antioxidants and anti-inflammatory properties. Having Neuromyelitis Optica/NMO already means inflammation of the neurological system, so it’s important to eat foods that will help calm the inflammation. And with so many of us being on immunosuppressants, antioxidants are nature’s non-conflicting immune boosters.
  2. Vitamin A. This aids in eye health.
  3. Vitamin C. Again, helps boost the immune system, which is especially important with the impending flu season.
  4. Fiber. They say those with regular digestion are happier in life. Pumpkin will keep you going (no pun intended), which gets rid of toxins quicker.
  5. Carotids. Like carrots, this is why pumpkins are orange. This helps with cardiovascular health.
  6. Pumpkin seeds contain protein and healthy fats. This regulates cholesterol and promotes brain health.
  7. Magnesium. This mineral keeps eyes and bone healthy.
  8. Potassium and zinc. Helps lower blood pressure.
  9. Tryptophan. This is a natural anti-depressant and mood lifter.

*From “Eat Your Pumpkin: 9 Reasons Why It’s Good For You” on mindbodygreen.com

I’m a firm believer in the philosophy, Everything in moderation. That means, go ahead and eat your candy. But why not balance it out with some healthy pumpkin too? Use pumpkin in breads (pictured above), soups, bisques, pies, or (my favorite and a holiday staple in my household) cheesecake. Who said something good for you can’t taste good too?

29
Oct 2014
POSTED BY Christine
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#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.

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.

huddle

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.

NMO Information Day, Vancouver, BC

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NMO Information Day
 , Vancouver, BC, Canada

Registration Link: NMO or call Tel: 604-827-3111

Saturday, November 1, 2014  10:00 AM to 4:00 PM

Djavad Mowafaghian Centre for Brain Health 2215 Wesbrook Mall, Vancouver, BC

We would like to invite you to join us for this FREE event open to patients, family members, friends, caregivers, student/trainees or anyone interested in learning more about NMO. Lunch will be provided (gluten-free and non-gluten-free options). Please register attendance and lunch preference at link provided above.

Learning Outcomes of NMO Day:

-Today‘s NMO overview: Introduction to NMO/Diagnosis and Symptoms/Treatment Options

-New NMO research: What is being done worldwide and here in BC

-Existing advocacy, government, hospital and MS Society resources and support for NMO

-How can you get involved

-UBC NMO Clinic/Research Program: Update and vision for the future

17
Oct 2014
POSTED BY Lelainia Lloyd
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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
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Whistler

trees(C)

Recently, my husband and I went on a 3 day weekend getaway to Whistler, British Columbia. For those of you not familiar with Whistler, it’s about a 3 hour scenic drive up the sea to sky highway from Vancouver and was home to the Nordic and alpine ski events for the 2010 Olympic and Paralympic Games. It is one of my favourite places to visit. The timing was perfect because, as I mentioned in my last post, I was feeling pretty burnt out dealing with health issues related to NMO.

On our first day in Whistler, we set off on a 6 km hike. Hiking for me is no mean feat because I have spinal cord damage from NMO and as a result, I have no proprioception. (The ability to know where my body is in space, which affects balance.) The hike was challenging-the path was full of tree roots, loose gravel and rocks, steep climbs up on rock faces and in several spots narrow paths with drop offs-not the sort of thing that someone with balance issues would normally be tackling. When I hike, I have to have my hands free so I can use my arms to balance myself (picture me constantly doing windmill motions with my arms as I walk along) and I need to be looking at my feet and concentrating the entire time to avoid tripping and falling.

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The hike was beautiful. We were in the woods the entire way and the views of the Cheakamus River were spectacular. The river was this amazing jade colour and there was a beautiful waterfall which we could see from the trail. That alone was worth the trip.

boat

We also rented a canoe and did some paddling on Alta Lake the next day. It was so peaceful.

It was so good to get away for a few days and remember what it’s like to feel human again. Spending time in the mountains is like balm to my soul. For me, reconnecting with nature is the best medicine.

06
Oct 2014
POSTED BY Lelainia Lloyd
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Four Senses season 2: And it’s a wrap!

I returned home to Houston last week from a three-week stint as a Torontonian/Canadian while filming the sophomore season of the cooking show, Four Senses, which I co-host with Carl Heinrich of Top Chef Canada and Richmond Station.

Production, I’ve learned from being on MasterChef season 3 in 2012 and now Four Senses, is hard work. It’s long days of being on your feet virtually the entire time, and even if you’re exhausted, you have to ramp up the energy level to 200% (because it will only come across as 100% on camera). Over the 22 days, I only had four days off (in the industry, we call them “dark days”)—but even two out of those four days I was flying to Indiana on other business, so it felt more like two days off out of 22.

But as the cliche goes, good things don’t come easily. I must say, there is nothing quite like the satisfaction you feel after someone (this year, it was Carl) yells, “It’s a wrap, everyone!”

Production takes a lot of teamwork: the producers guide the creative concept, the director and assistant director (called the AD for short) guides the execution of the episodes, the production coordinator and assistants take care of all the behind-the-scenes work, the culinary or kitchen team prepares and styles the food, the camera and sound crew gear up the technical equipment, the cast are the on-camera talent, the hair/makeup artist makes sure all the talent looks camera-ready, and so on. No doubt it takes a small village to put together a small show.

For those of you who don’t know what the show is all about, here’s a great article on “Four Senses” written by Rita DeMontis from the Toronto Sun. “Four Senses” is an original AMI TV cooking series designed to inspire vision impaired and sighted novice cooks to get excited about creations in the kitchen. What makes “Four Senses” unique is the descriptive video component is built right into the show instead of in post-production—this means no awkwardly placed voiceovers describing what I’m doing on the small screen but rather I will tell you exactly what I’m doing using specific descriptive words. This makes the cooking show and recipes easier to follow for the vision impaired audience. And recipes are available online in fully accessible format (because, let’s face it, who in their right mind cooks along with the TV chef at the very same time?).

Did you watch FS season 1? What are your thoughts? What cooking shows or aspects of particular shows do you like or dislike? Would love to take your feedback into consideration if we get renewed for a third season.

FS season 2 will air in January 2015 on AMI in Canada. And for many of you from all over the world who have asked, yes, FOur Senses will soon be available online for all to watch! Stay tuned…

Wrap photo of cast & crew

 

 

30
Sep 2014
POSTED BY Christine
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Baby Miller #2

Here is a vlog about my process with invitro the second time around and how I am doing. Hope you all will enjoy!

 

 

24
Sep 2014
POSTED BY Erin
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