ALLEN 1st year playing Tball

YouTube Preview ImageThis year marked my 1st year being a sports mom. Allen started Tball in April and finished playing the end of June. We signed him up to play Tball for a few reasons one main reason was so he could play with other kids and second was his best friend from school was also playing Tball. I was nervous about not knowing if he really would enjoy playing and of coarse his attention span. For this being his first year he did a pretty good job. Allen really enjoyed hitting the ball but that’s about it. When he was suppose to play in outfield he would just sit there and play in the dirt. It took him a little while to learn the base patterns but for 4 years old he did a pretty good job! He was Happy T ball was over the end of June since it started to get hot and some of the games he played was almost 100 degrees. The most important thing out of this is that Allen had fun and he met new friends. Hope you all enjoy the photos and the video of him playing. The lesson I learned out of being a sports parent that I wanted to be one of the parents that helps with the team and get to know the kids that are playing on the same team as my son. The other lesson was learning to juggle everything on Saturday for games that were right in the middle of the day.

 

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18
Jul 2016
POSTED BY Erin
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Guest Blogger Lisa McDaniel talks about: Why she is a strong advocate for NMO Patients

Why?

Why do you do it? How can you work with NMO patients after you lost your son to this horrible disease? Those are questions I hear quite often as I work within the Guthy Jackson Charitable Foundation as well as from those in my personal life. There is a simple yet complicated answer. The simple answer is I do it because I care and because it is important to me. The complicated answer goes much deeper.

For those who don’t know our story, I will give you the short version. Our son, Collin, was barely 5 in 2007 when he first lost his vision. It took a few months before he was diagnosed with NMO. His course was very severe with constant flare ups of optic neuritis as well as transverse myelitis. After 4.5 years of suffering and fighting with everything he had within him, Collin passed away on March 29, 2012, at 9.5 years old (we must remember the .5 according to what he always told us). Yes, it is a very sad story if you stop there. Of course, we were and are still heartbroken and we still miss him tremendously. However, those who have followed this story and lived it with us know our story did not stop after his death.

A google search in early 2008, led me to very negative information about NMO. It also led me to an email group where I met some amazing people online. Those people became my family’s lifeline and helped me to learn everything I needed to know about NMO. I learned about the correct medications for NMO, the differences between medications for a flare-up versus medications for prevention of future flare-ups, what to look for to recognize a flare and other things NMO patients and families need to learn. The information I learned was great, however, well beyond the information I gleaned was the sense of support and family I received.

In 2009, I was able to attend the first ever NMO Patent Day in Los Angeles, CA. It was overwhelming as well as amazing. It was the first time our NMO community had been able to come together outside of the email support group. I met and interacted with doctors who took an interest in Collin and did their best to help us figure out the right combination of medications for him. I remember leaving LA filled with hope for the first time since Collin had been diagnosed. I vowed then to attend every Patient Day I could.

Throughout the years of Collin’s battle, I became close to many of the patients and families, as well as doctors in the NMO community. When Collin passed away, it was devastating to our family, however, it was also devastating to the extended “family” we had met through NMO. It was at then I knew I had to stay in contact with those incredible people, but I also knew it was time to change the role I was in with them. It was time I gave back to them a little of what they had given me and my family. Not long after Collin’s death, I had the opportunity to go to work with the Guthy Jackson Charitable Foundation as the Consulting Advocate.

I am honored to be able to serve the NMO community. I love working with the patients and families as they seek information and support. One of the best things about working with the families is empowering them with knowledge and helping them learn to advocate. Advocacy is very important when a rare disease is involved, whether it is advocating for a loved one or for one’s self. As we build knowledge, we can build awareness in the world and with awareness, a diagnosis may be quicker. Education is important so patients know when to call their doctors and fight for what is needed. We don’t need to have huge plans and goals to advocate, we only need to make our minds up to take any size action. To quote Edward Everett Hale, “I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.”

It is incredible to make a difference in the lives of others. It amazes me how I am called upon to help educate doctors and medical staff about NMO, which in turn helps future patients. I am just a simple mom who wants to make a difference and wants to continue fighting a battle one little boy started. I, like Victoria Jackson, am just a mom on a mission! I have a heart for my NMO family and I have a passion for helping them. That doesn’t make me special, it just makes me willing. I am humbled to continue the work Collin led me to. I am not writing this to toot my own horn, but rather to share a beautiful story with you. Realize, this story is not about me, but about what can happen when a life is changed. If you want to know anything about Collin at all, know he was an incredibly compassionate child and I have no doubt at all he would want me to be helping those who are going through the disease which took his life. I am not stronger or better than anyone reading this and everyone is capable of doing what I do.

Another way Collin encouraged me to make a difference was through The Collin McDaniel Hope Foundation. My family and I started CMHF along with our Co-founder, Johnnie Sue Gilbert, whose son Nathan is living with NMO. It is our mission to make life just a touch easier for families who have children diagnosed with NMO. CMHF helps with medications, travel, wheelchair ramps and other things children diagnosed with NMO may need. While it is a small non-profit, we have been able to help many families in the last 3 years.

While my work is incredibly painful at times, it is also incredibly rewarding. Why do I choose to do it? All because God chose me to be the mom of one little red headed boy who changed my life and touched immeasurable others in his short life. To me, this is Collin’s legacy and that is the real answer to the question, “Why?”.

So Many Pills

I know it’s a gripe that I share with most NMO patients – having to swallow a lot of pills several times a day. I organize my medication in a daily pill organizer. Because it has become part of my daily rituals, I find myself often second guessing if I even took them today. Being able to check my pill organizer answers that question.

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Teaching blind and low vision students how to cook

**This entry was originally published on Christine’s blog.

Last April, I was invited to teach a cooking workshop at the W Ross MacDonald School in Brantford, Ontario, Canada. A little background on WRMS: founded in 1872, the school teaches blind and blind-deaf students from grades K through 12. There are currently around 200 enrolled students.

With a grant received from the Ministry of Education in Ontario, WRMS created a Healthier Eating Program with the purpose of teaching students the importance of health and nutrition. As part of the program, I was asked to lead a one-day workshop and teach some of the cooking students how to independently prepare a nutritious meal. Many of the students were going to graduate and begin university soon, so as in the spirit of education, there was an emphasis on fostering independent thought and action.

So what should we cook together as a class?

There’s a careful process for curating a menu, whether it be for a fancy gala, an intimate dinner, a festive party, or (in this case) a student workshop. You have to consider your audience; understand the event; and know what’s available in terms of ingredients, equipment, and abilities of the cooks. For this workshop, my audience was high school students with no or limited vision. Soon they will be living on modest college students’ income, so the ingredients and equipment required couldn’t be expensive. I wanted the recipes to be easy so as to not intimidate, yet delicious enough for them to enjoy and want to revisit in their own kitchens. I also needed to encompass the different food groups to provide an array of nutrition. In considering all of these parameters, I decided to teach them how to make Peruvian-style baked chicken with green chile sauce, roasted vegetables, and rice pudding with orange zest for dessert.

Here’s a little known fact about me: I love chicken on the bone. I love gnawing all the meat and cartilage off chicken. The hubs makes fun of me because in the time I take to eat one chicken wing, he’s eaten four. My favorite part of the chicken are the leg quarters, because dark meat is juicy and delicious. It also is more forgiving during cooking, which means it’s harder to overcook. I requested the students cook with chicken leg quarters, but their teacher informed me she’s had trouble getting them to eat unfamiliar things like beans (yes, beans!), so bone-in meat may not go over well with the kids.

“They may get squeamish about it,” she said.

What???

After I thought about it, I decided to refuse the substitution for boneless, skinless chicken thighs. I explained that people need to know where their food comes from: that meat comes from animals that were once living and not from a rectangular styrofoam container at the supermarket.

I said, “I want the students to respect their food.”

The teacher agreed and said hopefully since the “words of wisdom” would be coming from me and not her, maybe they’ll listen.

On the day of the workshop, I actually didn’t get any squeamish vibes from the students when they had to touch the raw bone-in chicken legs. I told them why it’s best to use whole chicken or at least chicken parts most intact and closest to resembling a whole chicken. Since it wasn’t a butchering class (and honestly, I’m not the greatest butcher), we settled on chicken leg quarters.

After the food finished, we all sat down to eat, and everyone enjoyed the mealtime together.

“Best of all,” I said, “you cooked it yourselves!”

The teacher and some of the students were so touched by my inspiring presence, that when they told me how much my time there meant to them, I felt in turn incredibly blessed. It’s always nice to be reminded why I’ve been given the position to advocate for the blind.

This experience of teaching the students at W Ross MacDonald School convinced me I want to open a cooking school one day for both children and adults. Maybe
That’ll be my mission after opening a restaurant and publishing my memoir. I never thought of myself as a teacher, but since my philosophy is to always try new things in life, perhaps opening a cooking school is in my destiny.

21
Jun 2016
POSTED BY Christine
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8 years living with NMO

June 23rd marks my 8th year being diagnosed with NMO. It’s a bitter sweet day to reflect on as I remember how much my life changed within a week. I remember so clearly; I was working at my family’s hotel in Frisco and I was riding the elevator down to the lobby when all of a sudden I couldn’t control my left arm. I walked into my husband’s office since he was the general manager. He looked at me and asked what the heck is wrong with me and to stop waving my arm around. I said something is not right and I need to get to the hospital. Within hours I was diagnosed with Transverse Myelitis, which they thought would likely be my only attack. They suggested that I should be fine after my 5 days of steroids in the hospital.

Almost 1 month later I had another attack where this time my whole body started shaking uncontrollably and I started to go paralyzed on my left side. This time we drove down to Denver and I was admitted to the hospital for 5 days again for IV steroids. They did another MRI and they changed my diagnoses to relapsing remitting MS. I didn’t know what to think when they told me I had MS but I focused on finding a neurologist to start MS medication right away. What a whirl wind experience I had to find a doctor and to start educating myself about MS and all the different medications I had to take. At one point I was taking 15 different pills, which did not include my MS medication that I had to inject into myself everyday.

In August again 1 month after my second attack I started to go blind in my left eye and the doctors did not understand why I was having such horrible attacks since I was on MS medication. My neurologist was second guessing I had MS so I was admitted again to the hospital for 5 days of IV steroids. My doctor recommended I go to the Mayo Clinic and get a second opinion as he thought I had Neuromyelitis Optica. When my doctor told me that I might have NMO he looked at Eric and I and said I would have a better chance winning of the powerball then being diagnosed with NMO. Well within a month I went to the Mayo Clinic and the doctor there agreed I had NMO. Now my life was going to change even more they originally told me. I needed to start taking Rituxan right away and the doctors could not guarantee I would get my vision back in my left eye.

Looking back all I went through and how much my life changed after being diagnosed with NMO it’s been bitter sweet. At one point through my journey I thought I would never be able to have kids and I would never see out of my left eye and I would never recover being paralyzed on my left side. I beat all those things; I have two adorable children, my left eye I can see out of, and for my left side it’s just more weaker then my right. I am very thankful I have seen some wonderful doctors that helped my dream of having kids come true. I have also met some incredible people because of having NMO and I wouldn’t have met them if it wasn’t for NMO.

The Whirlwind That Was May

 

Operation Med School, UBC, May 2016

Operation Med School, UBC, May 2016

May is MS Awareness Month in Canada. This means it’s been a crazy busy month in terms of advocacy. I am an MS/NMO Ambassador for the BC-Yukon Division of MS Society of Canada. This means that I am invited to attend various events to share my story and talk about the important work the MS Society does.

At the beginning of May, I spoke at Operation Med School at the University of British Columbia. This is an annual day-long conference for grade 12’s and undergraduates who are interested in medicine. I gave four presentations on the MS Society and what it’s like to live with MS and NMO.

I had a hands-on experience that I shared with students to simulate some of the symptoms MS and NMO patients deal with every day. Volunteers were asked to put on one high heeled shoe and one swim flipper and then try to walk a distance. This gave them an idea how hard this is to do when your balance and gait are affected. None of them could walk without holding onto the table for support. When I asked them if they felt they could walk around campus like this for a whole day, all of them said no. I then had volunteers put on a pair of oven mitts and asked them to do simple tasks like undo and tie their shoe laces, undo and do up buttons on their shirts and zip and unzip their jackets. This helped them understand what it is like to have numbness and the loss of small motor skills in their hands, something I live with every day. Finally, I passed around a pair of safety glasses which I altered by painting the lenses with white glue. I asked them to try them on and then attempt to read the NMO pamphlets I’d handed out. This illustrated what it’s like to have optic neuritis.

With Port Coquitlam Mayor Greg Moore

With Port Coquitlam Mayor Greg Moore

 

In front of Port Coquitlam City Hall with the proclamation.

In front of Port Coquitlam City Hall with the proclamation.

My second event in May was attending the Port Coquitlam City Council meeting to accept a proclamation for MS Awareness month and to give a short speech. Mayor Greg Moore and the Council members were very kind and welcoming. I had 5 minutes to speak, so I spoke like the wind! I talked about MS, the work the MS Society does, shared my story and invited everyone to the Tri-Cities MS walk. In addition to City Council there were also members of the public in attendance as well as the media, so I made the online edition of the paper the next day.

My final event for this month was to speak on a panel for the UBC Faculty of Medicine. Students from a variety of health disciplines attended and I spoke to two groups for 30 minutes about my experiences living with NMO and about patient-centred care.

May 25th was World MS Day and I was busy all day on social media raising awareness for NMO testing. We had excellent support from the MS Society of Canada as well as a number of my friends in helping spread awareness. The Canadian MS society also made a number of videos on this year’s theme, “Independence”. My friend Peter Schwartz-Lam spoke about something I’d said back in January during the grants review process. He did a beautiful job sharing the spirit of what I’d said. See for yourself:

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That’s my selfie up in the top left hand corner!

Last night I received a really lovely thank you email from the BC-Yukon Division of the MS Society. It’s always nice to know your time and energy are appreciated. It’s been a real struggle this month health-wise, but it meant a lot to me to be able to do this work. I am grateful, as always to have had the opportunity to serve.

30
May 2016
POSTED BY Lelainia Lloyd
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Support the second annual Dining for NMO, raise funds for NMO rsearch

Last October was the first ever Dining for NMO Day during which restaurants donate a portion of their proceeds to the Guthy Jackson Foundation for NMO research. This year, the second Dining for NMO day will be held Monday, October 17th.

Watch this video and visit the Dining for NMO site to learn how to support the cause. Together, we can find a cure.
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17
May 2016
POSTED BY Christine
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Accidental Event Planner

Thank you to the lovely ladies of NMO Diaries for asking me to guest blog about our 5km Walk/Run which takes place on Sunday June 19 at Rocky Point Park in Port Moody, British Columbia, CANADA.

As we enter year 4…yes that’s right…year 4 and as I sit down to type this out now, I find myself reflecting a lot on why this event even exists. The short answer to that is that this event exists because my son, Riley, was diagnosed with Neuromyelitis Optica (NMO) on November 23, 2011.

I recently happened upon the following quote and really, it describes perfectly why I do what I do for my child.

MY PROMISE TO YOU:

To fight for you

To protect you

To be your voice

To always love you.

 

Pretty simple right? As parents, this is basically our job, but throw in a diagnosis that you have no control over and these words take on a whole new meaning. Early on in Riley’s diagnosis, I learned that I had no control over what was happening to him and that no matter how hard I prayed and pleaded, NMO was not something that I could take away from Riley and transfer to myself. I must admit, that has been, and continues to be, the hardest part of this journey….I cannot take it away and I cannot transfer it to myself!!!! What I have discovered, however, is that I CAN fight, I CAN protect, I CAN be his voice, and I CAN love!!!!

Once I figured that out, I thought about what I could do to fight this monster that had grasped my child so tightly. Those who traveled with us for that part of the journey, will remember the seemingly endless violent relapses and the happy homecomings and then another relapse. This repeated itself over and over in that first year, and as I type this now, I stop over and over to collect myself as the waves of memories from that horrible time almost suffocate me. As I catch my breath, I can only think “Thank God that right here, right now, we are no longer there”, and yet during those times it seemed like it would never ever end. (you can read a glimpse of the story at www.nomorenmo.com ). In those days, I was a runner and found very quickly that running allowed me to process and to grieve as I pounded my feet into the earth. It became for me, my therapy, and I am grateful to have had the strength and the endurance to be able to run and work through this very difficult part of our NMO journey. It was during one of those runs that the thought came to me to have a run specific to NMO. I visualized a sea of green and what a blessing it has been to see that become a reality. When I founded the First Ever 5km Walk/Run for Neuromyelitis Optica (NMO) in 2013, I had no training in event planning. It was then, and continues to be, frustrating at times, but then I remember my promise…to fight, to protect, to be his voice and to love. This event is my promise come to life in battling the monster that lives in my child. It has become so very much more than that now. In times of grief and desperation, we find comfort in those who just “know” exactly what we are feeling. Early in Riley’s diagnosis, I sought out support. I was searching for people who understood what I was going through and that search produced so much more than I could have ever imagined. What I found was a family…a group of people that opened their arms and their hearts and invited me in. At the very lowest times, they have been the arms that have surrounded me and at the highest moments, they have rejoiced and celebrated loudly with us. I have been blessed so far beyond what I ever imagined and I struggle to find a word big enough, loud enough, to express my gratitude for this incredible group of people that never would have been a part of my life had NMO never entered our world. So you see, an event that was started because one little boy received a diagnosis, now continues because that monster has grabbed ahold of too many people that I love. To each of you who battles this disease, I extend my promise also to you. I will fight for you, I will protect you, I will be your voice and I will always love you.

As we prepare for year 4, there are many emotions, and over the years, I have started to see a pattern in that. At this moment today, I am wondering what our sea of green will look like this year. Our registration, although off to a good start, is very slow moving right now. Those who know me well, know that causes much panic in me. I celebrate every registration as it comes in and with each name I see, I hear the words, “I’ve got your back”. I always think back to the movie, Field of Dreams and the line “if you build it, they will come.” I think okay…”if you plan it, they will come”, which totally makes sense because there is no way the people in our lives would leave us standing alone!!! Last year, we had 16 people with the diagnosis of NMO on our race site and what a blessing it was, and will continue to be, to provide a place for these amazing people where they can feel loved and supported while we work towards our common goal of a CURE! Who wouldn’t want to be a part of such an amazing experience!!!! We have made it so easy for anyone, anywhere, to be a part of this event. If you are unable to be there in person, we have a virtual participant option which just lets you say, “we can’t be there physically, but we CAN fight this with you.” Each year, I write the names of all of our virtual participants on my race shirt so that I bring you with me onto the race site.

So there you have it! Never in my wildest dreams or plans did I ever even think that I would found an event or become a rare disease Advocate, but each year, each speaking engagement, confirms that I am exactly where I am supposed to be at this moment, on this journey. It is a wild, emotional, scary, never ending ride, but it has been filled to overflowing with blessings and has taken me places that I never ever imagined I would go. Thank you to the amazing people in my life, who even when this journey has been at its most treacherous, buckled up their seatbelts, and stayed by our side.

 

Would you like to register for our event? Please do so here:   https://www.raceonline.ca/events/details/?id=1186

 

Would you like to donate to our team/event? Please do so here: Team Reimer pledge page: http://pledge.at/teamreimer or General donations: http://pledge.at/nmo

 

Would you like to see what all the hype is about, watch highlights from our last 3 years here: https://animoto.com/play/hHjb2xjvnYgUtFQeSek2ZQ

 

Please join us, in whatever capacity you are able, in making a difference in the lives of those who live daily with NMO. Every dollar donated and every step taken brings us closer to a CURE!!! #BecauseItMatters

 

10
May 2016
POSTED BY Erin
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Patient Day 2016

Guthy Jackson NMO Patient day is always a special day for me. It’s the one-day a year I get to connect with my NMO family. This year marked my 5th time attending this special day, this year I brought my mom. I wanted her to meet my NMO family and some of the doctors that I have talked with. Every year at Patient day Ms. Jackson does a fabulous job putting on this event for patients. It is such a great opportunity for patients to connect with each other and talk to some of the top NMO doctors. It is so nice to talk to another person that has NMO and talk about what you are feeling and they completely understand. This event is so special Ms. Jackson has doctors all over the world to come talk to us patients about whatever questions we might have. Also patients get to find out what’s happening new in the medical world of NMO.

The big topic this year was researchers talking to us patients about trying medical trials for new drugs for NMO. It was very interesting and there were some good points made about this topic. If you are interested to learn more about the clinical trials please visit the Guthy Jackson website there are some great resources there. The also had several breakout sessions this year from asking the Docs, nutrition, mediation, navigating insurance, managing pain and simplifying the science of NMO. It is a day where you can learn as much as you can about having NMO or being a caregiver for a NMO patient.

The other big thing is donating the blood to the Circles program that hopefully helps a cure for NMO. I strongly encourage you to do this if you are a NMO patient and your family. We all have a piece in this very large puzzle and we need to work together to help find the cure.

When the conference is all over with the patients gather around and have dinner and just talk to each other and have a good time. We are all like one big family and we really enjoy spending time with each other and like I said this is a one-day thing we get to bond like this. Its hard to say goodbye at the end of the night to each other. But we know in 364 more days we will be reunited together again.

http://guthyjacksonfoundation.org

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Let’s Talk About Clinical Trials

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This year’s Guthy-Jackson NMO Patient Day in LA focussed on clinical trials. In the last year or so, there have been THREE clinical trials for NMO launched. In the world of rare disease, this is HUGE! It means there are drug companies out there that are willing to spend the time and money necessary to explore the possibility of new medications to prevent, treat and cure NMO. It’s a giant step forward for an orphan disease and it would not be possible without the hard work of everyone at the Guthy-Jackson Foundation.

So what does that mean, really? To put it simply, it means that we as patients need to step up. The clinical trials mean absolutely nothing unless NMO patients enrol. Because we are rare, the pool of possible trial subjects is already limited. If you add to that the possibility of some candidates being excluded for various medical reasons (there is strict medical criteria that must be met by each potential subject, for safety reasons) that further limits the number of patients who can participate. In order for a clinical trial to be viable, there are a minimum number of participants that must be met to make the results statistically significant. Without our participation, it is impossible for the medical science around NMO to move forward.

Having more treatment options for NMO is important. All of the current treatments for NMO are using drugs developed to treat other diseases. This means that while they might be helpful in the treatment of NMO, they are not specific to NMO and many of us fail on these drugs-we continue to have attacks and/or experience serious side effects which lead to us being unable to continue taking them. Having options is essential, which is why participating in clinical trials is imperative.

Last November, I attended NMO Patient Day at UBC and had the opportunity to get information about the clinical trials. I went over the information I received a number of times, I thought about it, I did my homework by digging up even more information online and I talked to people I trusted about it. When I was at LA for Patient Day in March, I had the opportunity to ask the experts more questions. After much consideration, I chose to screen for one of the trials. It was not a decision I came to lightly, but it was the right one for me.

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The pile of paperwork.

Right after I got home from LA Patient Day, I was scheduled for my first screening appointment. I met with the clinical trials team from UBC to fill out the paper work which included a medical history and signing the informed consent and then I had a number of tests to complete.

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Monica, the lab tech.

 

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All those vials are mine!

There was a blood draw which made me laugh when Monica, the lab tech emptied a box of vials onto the counter. I did a quick count and discovered there were FORTY in total! Vampires! Fortunately many of the vials were small and used to break up the sample into smaller quantities, so I didn’t actually have to be siphoned! There was also a TB test so blood was put on a glass slide. It only took a couple of minutes and was pretty painless. Monica was super nice, so I really didn’t mind.

ecg

ECG

I had a physical with the neurologist who oversees the clinical trials which took about 20 minutes. Nothing exciting to report there-he listened to my heart, took my blood pressure and temperature and all the standard stuff. After that, I went across the hospital to have an EKG done. I walked those results back to the clinic and was free to go home. Part one of screening was done.

About a week went by and my blood results were in. I got a call from the clinical trials team telling me that one component of my blood work was not up to snuff and that they had been granted an extension of my screening time so that I could redo that part of the blood work and see if it improved. On my second screening visit, Monica redrew my blood and then I had a neurological exam by one of the neurology fellows. This was to determine my EDSS score. (Expanded Disability Status Scale which is the assessments of functional systems: Pyramidal (motor functions like walking), Cerebellar (coordination), Brain stem (speech and swallowing), Sensory (touch, vibration and pain), Bowel and bladder functions, Visual, Mental.)

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The MRI clinic at UBC.

From there, I went over to the hospital and had a head to tailbone 3 hour MRI with contrast. I am NOT a fan of MRIs, but the techs that were running it, Laura and Alex were so incredibly patient-focussed that for the first time ever, it was not a horrible experience. When it was over, I actually said “Thank you for making that not suck!” I was almost in tears and asked Laura if I could give her a hug. What made it so different from all the other MRIs I’ve had over the years is that they talked me through the entire thing. They would tell me how long a sequence was, whether the table was going to shift or not and in which direction, if the machine was going to vibrate and they would constantly be asking if I was okay and telling me I was doing a good job. Believe me that went a long way towards making me feel calm and cared for. They seriously need to be training other MRI techs how it’s done. Laura and Alex are exceptional at their job.

I still needed to have a neuro-opthomology assessment, but that was being scheduled after the second round of blood work came back. About a week later, I got an email from the clinical trials team saying that I had been excluded from the trial, by the slimmest of margins. In all honesty, I was stunned and frustrated that after all that, one tiny little thing meant I could not participate. I think for me, the hardest part of it was that some nameless, faceless stranger in another country got to make a decision about my health for me and there was absolutely nothing I could do about it. It’s taken a few weeks for me to digest that. I do want to say that the clinic trials team at UBC was excellent. I felt that throughout the entire process, they were kind, respectful and considerate. They were always willing to address any questions or concerns I had and did an exceptional job of communicating along the way. I have nothing but respect for the job they are doing. I know it’s not easy.

So would I do it all again, if I got a do-over? The simple answer is YES. I know how important clinical trials are and what it could mean to not just my life, but the lives of everyone living with NMO. At the LA Patient Day I heard so many people say that they were failing on their treatments or had run out of treatment options. This is not okay. This is life and death we’re dealing with here.  I want us to have options for treatment. I know we have the best and brightest minds working tirelessly to unravel the mystery that is NMO and because of that, I do not hope for a cure-I EXPECT one. In the meantime, I believe we need treatments that will help us maintain or improve our quality of life and the only way we are going to get them is by participating in clinical trials.

Here’s a video from LA Patient Day that explains how clinical trials affect us as NMO patients.

circles

My 6th blood draw for CIRCLES.

That said, obviously I know that not everyone can or should participate in clinical trials. If you can’t, for whatever reason, you still have the power to make a difference: sign up for research studies. The CIRCLES study is an excellent way to partner with NMO scientists all over the world. It’s a simple blood draw any time you are able to connect with your collection site. Mine is at UBC, where I see my neurologist, so any time I am booking an appointment, I make sure it will coordinate with having blood drawn for the study. At my clinic CIRCLES blood can only be drawn Monday through Thursday prior to noon, in order for it to be shipped to the biorepository in the US. I book my appointments specifically to accommodate this schedule. Sometimes I am out at UBC for other reasons and I will email the CIRCLES team and say “Hey, I’m on campus this week. Would you like some blood?” They always say yes. It’s never more than 20 minutes of my time and it’s that simple.

There is an excellent video from LA Patient Day about Your BioBank at Work that explains how the blood from CIRCLES is used and the difference it makes. It’s worth watching.

mri2

Back to the MRI clinic!

I have also taken part in other types of studies. The most recent one was an NMO and cognition study that involved doing some simple game-like tests for the first part and then an hour brain MRI for the second part. I had the brain MRI about 2 weeks ago and had the same fabulous techs, Laura and Alex who did my clinical trial screening MRI. After my initial experience with them, I trusted them completely and for the first time ever, had ZERO anxiety having the MRI done. That was amazing! When it was all done, Alex handed me a disc with my MRI on it. I was both surprised and pleased. My UBC Health Mentor students will enjoy seeing it. It was a lovely thing for him to do. You get what you give!

All NMO research is important. The information gathered helps researchers and clinicians piece together a better understanding of this disease and its effects. It just takes one small thing to unlock the mystery and find the cure and we can all be a part of that process. I encourage you to consider participating in whatever way you feel comfortable. We have the power to help end this terrible disease. Together, let’s say YES to cure NMO!

 

To learn more about NMO Clinic trials, please visit the Guthy-Jackson Foundation Clinical Trials FAQ page.

25
Apr 2016
POSTED BY Lelainia Lloyd
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