#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.

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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.

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

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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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career, Food, Rock star!

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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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Patient Burnout

noSo for the last 2 years, I’ve been volunteering with the UBC Health Mentor’s Program. The way this program works is that 4 future health care professionals are matched with a Health Mentor who has a chronic illness and/or disability or is a caregiver to someone with chronic illness and/or disability. The program offers students the opportunity to learn about patient-centred care and collaborative care through working with their mentor and fellow group members for a period of 16 months. This program has been accredited as part of their formal education and includes students from the medicine, nursing, dentistry, pharmacy, physical therapy, occupational therapy, dietetics and speech and language pathology & audiology. I am just in the process of finishing up with my current cohort, which is my second group of students and waiting to hear about a third.

These students are so excited and invested in the experience and want to learn as much as they possibly can. What sometimes happens is that something I’ve said really stands out to them as a key piece of learning. Often they will say to me “I remember when you said….” and cite an example of something that hit home for them that they remember. I find it fascinating what gems they glean from our shared experience.

One day I was talking about how sometimes, when I am going through a particularly rough time physically, how onerous it can be to have multiple doctors appointments, tests or treatments in different cities and different hospitals taking up multiple days in a week or a month. It can get pretty overwhelming and leads to what I call “patient burnout”. When I mentioned this in passing to my students that day, it immediately got a reaction. “Patient burnout?!? That’s a THING?!? I thought just doctors got burnout?”  This launched a very interesting discussion about how it feels to have to continuosly make myself vulnerable to medical professionals when I’m not feeling well and how emotionally exhausting a period of intense medical care can be. It had never occurred to them that this could even happen or how it might affect patients.

Given how sick I was in August and the fact that I spent 12 out of 31 days at a hospital having either a doctor’s appointment, a treatment or a test I’m feeling quite burnt out right now. I still have 2 more major appointments in the next two weeks to get through and at this point, while they are necessary, I am gritting my teeth just to get through them.

So what am I doing about it? Well one thing I’m doing is putting a moratorium on medical appointments in October. Yes, I am taking the month off. Unless I am bleeding out the eyes (seriously, that has happened to me!) I am not going in. Sometimes you have to say NO to these things in order to say YES to yourself. I am also going on a brief holiday that I booked months ago which now couldn’t come at a better time. I’ll be spending time in the mountains hiking and enjoying a change of scenery with my husband and best dog at my side. That always helps me feel grounded and refreshed again.

Self-care is always a work in progress. Sometimes, when I am in the thick of dealing with medical stuff, I have to just stop, take a breath and ask myself “What do I need right now?” Sometimes I need to call my best friend and vent. Sometimes I need to connect with my support group to know I’m not alone. Sometimes I need to escape to the movie theatre for a couple hours for a mental break. Sometimes I need to put my hands to work in my studio and sometimes I just need a good hug.

I believe our mental health affects our physical health, so the more self-care I practice, the better off I will be. If I feel myself bordering on patient burnout, then it’s my responsibility to take immediate action. Prevention is nine tenths the cure!

 

08
Sep 2014
POSTED BY Lelainia Lloyd
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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.

Patient Day in Colorado

August 23 was the first local patient day here in Colorado hosted by the University Hospital of Colorado. Dr. Bennett and his staff did a great job! It was nice to see new and old NMO family. The Guthy Jackson Foundation helped as well to get this event going. The goal for the local patient days that will happen in five other locations is for patients and caregivers to learn about NMO and to see what the research teams are finding out for any new medications coming down the line. It also so NMO patients can meet each other and help advocate for this disease. The Guthy Jackson Foundation will still hold the national patient day in Los Angeles March 4th 2015.

For this first patient day there was a total of 62 patients and caregivers total. Over half of them this was the first patient day that they have attended. Dr. Bennett was the main speaker for patient day. For people who don’t know him he works with the Guthy Jackson Foundation helping find a cure for NMO he also sees NMO patients at the University Hospital of Colorado. The also had a pediatric NMO doctor there Dr. Schreiner talking about the difference between adult NMO patients and pediatric. Dr. Bennett gave some encouraging news that there were three new medications that they are researching for maintenance drugs for NMO. We also had guest speakers about nutrient, applying for disability, and how to become advocates for NMO. I learned a few new things going to the patient day here in Colorado. But why I really wanted to go that day was to see my NMO family that I always see every patient day and to meet new NMO family members. It is so nice to be around people that truly understand what you are going through and also really care how you are doing. There is a special connection with NMO patients around the world we are not just friends we treat each other like family. I just love when we can all get together and see each other!

27
Aug 2014
POSTED BY Erin
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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