The 2017 Guthy Jackson Foundation NMO Patient Day is tomorrow, Wednesday, March 15

Every year when the annual NMO Patient Day sponsored by the Guthy Jackson Foundation rolls around, I get nostalgic since that’s where this blog was born.

Unfortunately, I haven’t been able to attend for quite a few years since I’m always tied up with other events during the Patient Days. I know there are many patients and caregivers who are also unable to attend, and the nice thing is the GJCF will often stream or upload key videos from the day’s events online for worldwide viewing. You can check out this year’s events by visiting the 2017 NMO Patient Day webpage. I heard they’ll be active on social media this year, too, so be sure to check out the GJCF Facebook and Twitter for updates.

If anyone is attending in person or remotely this year, we welcome your comments.

Washington D.C and Dr.Levy

Two weeks ago I had an Appointment with Dr. Michael Levy at John Hopkins. Since Eric and I were traveling all the way from Colorado we decided to Make a long weekend trip and see some of the Monuments in Washington D.C. It was my first time to the east coast and it has been over 10 years since Eric was there. We decided it would be best to leave the kids at home and enjoy a couple’s getaway.

 

Our flight left late Wednesday night and we flew into Dulles we arrived at 11:30 p.m. Time we got the rental car and drove to the hotel which was in Old town Alexandria in Virginia. It was 1:00 a.m. so we were exhausted. Thursday morning we slept in little and woke up and explored Old town for a while and had breakfast before heading into D.C. We decided to take the metro train into D.C so we didn’t have to worry about parking and traffic. We got off the train at the National Archives and walked through the National Mall heading to the Washington Monument. I couldn’t believe all the museums at the National Mall. You could spend weeks going through all the Smithsonian Malls and other museums. As we approached the Washington Memorial it was just incredible how tall it was and all the different people from around the world was just staring up to the top of it.

 

Next we walked down to the World War II monument that was very beautiful to see and peaceful. As we headed to the Lincoln memorial we walked right along the reflecting pool. Which is way bigger in person then what you see on TV. When we were at the bottom of the Lincoln memorial I was thinking how am I going to climb all these steps since my NMO Symptoms are starting to hurt from walking so much? I have been walking a ton and I didn’t want to burn myself out since we still want to go see the Vietnam Wall and the White House. When I slowly climbed the stairs to the Lincoln monument and reached the top it was just gorgeous to see! It was remarkable to see how big it is and seeing it on T.V is just not the same. The Lincoln memorial was my favorite memorial to see by far. Once we were done looking at it and reading all the stuff from Lincoln we sat on top of the steps and people watched. I just could not get over how many foreigners where there looking at our American History. The sad part that there were not very many Americans there looking at our history. I had to rest for little bit before we started to walk down all the steps.

 

The next memorial we looked at was the Vietnam wall that was very humbling to see. Just seeing all the names and all the flowers and gifts people leave there at the wall. After that we caught a cab to head over to the White house since I was getting worn down. It was kind of crazy getting out of the cab and having to walk to get close to the White House. Since you can longer drive on the street in front of the white house and the back of the white house. The have barricades up so you can’t even get close to the fence that surrounds the house. The secret Service guys are very on point and can be a little rude and kind of jumpy with people. We simply just walked all around the White house then I had to take a rest on the Southside of the lawn. So we could walk even more to get back to the train station and head back to Old Town. When we arrived back to Old Town we ate at a great Oyster bar called Hank’s Oyster’s I highly recommend checking it out if you are ever in that area. By time dinner was over we were wiped out and ready for bed since we had a 45-minute drive to Johns Hopkins in the morning and I needed to be there at 9:30 a.m.

 

Friday morning bright and early with a Starbucks in my hand we headed off to Baltimore to John Hopkins to see Dr. Levy. Eric was worried that traffic would be very bad and would take awhile to get there. We made good timing arriving at 9:00a.m. I have always enjoyed Dr.Levy I have seen and listen to him speak at Guthy Jackson Patient Day for seven years. I have always wanted to fly out and go see him and I was thrilled I got that opportunity, Dr. Levy and I spent a over an hour going through my NMO history and what issues I would like to address. He would like to switch some medications around and do some blood tests and follow up in a few weeks. Since I have been diagnosed for 8 years there was a lot of information that needs to be talked about. Plus he wants to look at my MRI’s when I was first diagnosed to my latest MRI’S to see how my lesions are doing.

 

After leaving the Hospital we drove around Baltimore a little bit then we went to a crab place that had really good reviews for crab. Eric wanted crabs right out of the bucket. Like when he lived in Virginia Beach. So that was a nice lunch. We decided to take a scenic route back to D.C I wanted to check out Georgetown. LOL it seemed like a good idea but it kind of a pain but we made it to Georgetown the next tricky part was finding parking. It took us awhile but Eric got it done. I wanted to go shopping and stop at my favorite cupcake store Sprinkles! If anyone really knows me I am very addictive to these cupcakes. If I am visiting a city and they have Sprinkle store I will be most defiantly will be stopping by and buying cupcakes. After shopping for a while we headed back to the hotel and rested for a bit and went to a late dinner at a fabulous Southern food restaurant called Hen’s Quarters. It was the best-fried chicken I have had in a long time. We took a nice stroll down King Street after dinner and headed back to hotel cause we were pretty beat.

 

Saturday was a very special day we decided to spend the day at Arlington Cemetery. I wanted to see the tomb of the unknown solider and the changing of the guard. But also were the Kennedy’s are buried. Also I wanted to spend our last day at a place that was not going to be too crowded with people and was going to be not so noisy and just spend a quite day getting ready to go back to reality. I loved watching the changing of the guard and over all seeing the cemetery and seeing where JFK is buried. We spent about 4 hours walking around the cemetery. We headed back to hotel around 3 and went to a local bar and had a few drinks and went shopping a little bit then off to Hank Oyster Bar again because they had the best crab cake we found during our vacation. We enjoyed our last romantic dinner. Since we had an early flight on Sunday Morning.

Now that I am back home I am still waiting to hear back about the blood tests and on Friday I have an Appointment with my neurologist about what Dr.Levy said and the new medications I Need to try. So I will keep you all posted!

http://hanksoysterbar.com

http://www.henquarter.com

https://sprinkles.com

 

img_7027 img_6980 img_6929 img_6910 img_6893 img_6862img_0152 img_6848img_6859 img_6844 img_6831 img_6828 img_6817img_6787  img_6765 img_6764 erin-at-lincoln-monument erin-at-washington-monument

 

 

 

 

 

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

IMG_0831 IMG_0836 IMG_0843 IMG_0841 IMG_0840 IMG_0839 IMG_0838 IMG_0844 IMG_0848 IMG_0846 IMG_0850 IMG_1199

Let’s Talk About Clinical Trials

pin

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.

papers

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.

blood

Monica, the lab tech.

 

blood draw

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.)

mri

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
DISCUSSION 6 Comments
TAGS