In this week’s Patient Profile we want to highlight Courtney Engel. Many of us may have also met her Mom, Christine Kryshak, at NMO (neuromyelitis optica) patient days in the past. Courtney is a Mom herself, a music teacher, a wife and also a patient advocate. She shared her personal thoughts on vision loss, music and relationships.
- NMO stats (diagnosed since, number of attacks, treatment centre, age if you’ll disclose).
In August of 2008, I started losing vision in my left eye. It began as a single dark line at the top of my vision field, but as time progressed, the darkness increased. It was like someone was pulling a shade down on my eye sight. I went to my eye doctor & then to an eye specialist in my hometown of Wausau, WI. They diagnosed it as a “simple” case of optic neuritis & told me that my vision would return on its own in time, as I was still young. (I was 28 at the time.) A month went by with no improvement. The vision in my left eye went completely dark.
My mom was able to get me a referral to the Mayo Clinic in Rochester that November. After several appointments, I was diagnosed with NMO. I received the diagnosis via a phone call while at work. The neurologist made it sound like it was a common thing & that it wasn’t a big deal. Boy was he wrong! Maybe he just didn’t want me to panic, but I feel that he was dishonest with me.
I began plasmapheresis at Mayo in January of 2009 in hopes of recovering some of my left-eye vision loss. Nothing came back, and I returned home.
My next major NMO attack occurred during a 6th grade orchestra concert I was directing. This would be early February of 2009. I was up on stage, and I noticed that the stage lights were dimming. The music became a bit blurrier. I couldn’t panic, as I had 60+ students on stage that I was responsible for. However, when I woke up the next morning, my world was in complete darkness. I had lost all vision in my right eye now, too.
More plasmapheresis. This time I did it more locally, but the instructions came from Mayo. I was treated at the Marshfield Clinic in Marshfield, WI. Having gone through a month of treatment, I did manage to regain most of my right-eye vision. I was about a week away from returning to work when another NMO attack occurred, and my world went black once more. I completed another few weeks of plasmapheresis at Marshfield, but this time only some of my right-eye vision returned.
Since that awful winter of 2009, I’ve only experienced minor vision loss in the right-eye on two separate occasions – after receiving my first Rituxan treatment (this was before the doctors knew we should be doing solumedryl prior to the treatment) and again after I had a bad case of the flu. I explain to people that my vision is like looking through a frosted window. I can see colors & outlines, but everything in between is pretty blurry. I cannot read without the use of magnification equipment, and I no longer drive.
I have been very blessed to have had no major NMO attacks for the past seven years. The doctors now feel that I have the NMO spectrum disorder, as I only get NMO attacks that affect my vision. I do experience the other NMO symptoms often, though – fatigue, body aches, headaches, etc. I undergo IVIg infusions every four months to help boost my immune system. I also get treated with Rituxan every six months. These treatments seem to be doing the trick – – at least for now.
- We know you’re a school teacher. Tell us about what you do.
I am a full-time orchestra teacher at the middle school level. I have a 6th grade, 7th grade, 8th grade, & auditioned advanced ensemble to direct. There are about 160 students enrolled in my program. It’s an extremely busy but fulfilling occupation. The 6th graders are beginners, so I am starting them from no knowledge of playing a stringed instrument. I teach them in small group settings & in large group rehearsals. There are also about six concerts each school year. I find concerts to be a bit stressful. This job is one of the few teaching jobs that puts students on the stage to display what they have learned.
I also teach three private violin students on my weekends. I really enjoy doing the private lessons, as this gives me the opportunity to work with older students & more challenging repertoire.
- Music has such healing properties. How has it helped you since your NMO diagnosis?
Music has been both healing & detrimental to my healing process. I began playing violin when I was four years old. By the time I was in college, I had travelled to Vancouver, Cape Cod, Austria, & France to participate in chamber music experiences. During my first few years of teaching, I was a member of a semi-professional symphony orchestra. I frequently participated in pit orchestras for community musicals, too. But since I lost my vision, the performing has pretty much come to a halt. I have not, yet, found assistive equipment which allows me to read & scroll enlarged music while playing the violin at the same time. I have a CCTV which allows me to magnify my music, but after each measure, I need to put down my violin & scroll the music over with my hand. This doesn’t give me the satisfaction of continuous play. Anything I want to play on my violin needs to be memorized. As violin playing was such a huge part of my life (pretty much for my entire existence), this left a huge hold in me, because it was suddenly taken away.
During the summer of 2010, I decided to put on a solo violin recital to help raise money for NMO. Since I had summer vacation (& this was before my son was born), I had lots of time to practice violin. I spent about three hours each day working on the repertoire, which I found extremely fulfilling for my soul. I poured my heart into my notes, & I found it to be therapeutic. The recital occurred in August of 2010. There are a few video clips of my performance on my FB page. I was overwhelmed by the number of people who came to listen to me perform & to support me in my cause. I managed to raise $13,000 which was donated for NMO research.
I am hoping to do another violin recital this coming summer. I am already looking forward to working on the music.
- You’re a working mom who also lives with NMO. How do you balance it all, especially on bad days?
I have a four-year-old son named Caleb. He is the best thing that has ever happened to me. Caleb is a ball of non-stop energy. It’s becoming more & more difficult to keep up with him. I miss those baby days when I could just sit there and snuggle!
I have an incredibly supportive and understanding husband. So when he’s around on “bad days,” I can always rely on him to take over while I recuperate. When I find myself alone on “bad days,” we try to do quiet activities, such as reading books, doing puzzles, or watching movies. Caleb is still awfully squirmy and doesn’t like to sit still for too long. However, he is also getting old enough to understand that I have these rough days & that I need my rest. A lot of the time he is content with me resting on the couch & watching him play on his own. Though, it is heartbreaking when he is in tears or upset, because I can’t run around with him.
- Having a successful pregnancy while having NMO is a hot topic in our community. Tell us about your experience and give us your advice.
I wouldn’t exactly say my pregnancy experience was successful. It was a very difficult journey for me, & the doctors are still not sure if this was due to NMO or other factors. During my first pregnancy, I had a miscarriage at 24 weeks. My baby girl had some heart issues & my placenta never grew to the necessary size to nourish my baby. I was a complete mess after the loss of my baby girl.
A year later we were blessed with our son, Caleb. During the first trimester, everything was going successfully. I had been put on Lovonox injections to assist with growth of the placenta & that was doing the trick. It was a super exciting time in my life. Many of my NMO symptoms dissipated while pregnant – I experienced less body aches and headaches. My vision also seemed to have slightly improved.
Everything was fine up until my sixth month of pregnancy. I contracted enormous respiratory issues which turned out to be pneumonia that just wouldn’t go away. I was coughing non-stop day and night. My ribs were fracturing from all of the aggressive coughing. One of my x-rays showed that I had 13 broken ribs at the same time. Broken ribs are painful enough. Add a pregnancy and a kicking baby was excruciating! Obviously, I couldn’t take any pain medication, so I just had to suffer it out. Ice packs helped a tiny bit. After eight weeks of pneumonia, my OB decided it was best to have an emergency C-section. A few days after my C-section, I completed a Rituxan treatment. I was told by doctors that you are most prone to NMO attacks right after delivering, and I certainly didn’t want to risk that!
Caleb was born at 31 weeks. He was a healthy baby. He stayed in the NICU for five and a half weeks, but this was mostly due to the fact that he was so small. He was born at 2.11 lbs. He had to reach five pounds, be able to feed off of a bottle, and pass the car seat test, before we were able to take him home. So, we were just waiting for him to grow. We are blessed that Caleb continues to be a normal, healthy toddler.
My advice to pregnant NMO patients or those who want to become pregnant is to seek out a great network of doctors who will work together. My neurologist at Mayo (Dr. Pittock) and my OB (Dr. Mascola) were constantly in contact with each other about my pregnancy. My OB was a specialist in high-risk pregnancies, & I therefore had more examinations than the average pregnant woman. This turned out to be an advantage, as I had many opportunities to see my baby boy through ultrasounds.
I also feel that it was important for me to speak with my doctor before attempting my pregnancy. My neurologist told me that I should get a final Rituxan treatment and then wait six weeks before attempting. At this time, I was told that it was not ideal to be treated with Rituxan while pregnant, so we were building up my defense against an NMO attack during the pregnancy. I was also not on IVIg at this point. I did, however, take oral prednisone, which does not cross through to the baby. I believe following this regiment assisted in keeping me NMO-attack-free while pregnant. Everyone’s health works differently, & it is critical to follow your doctor’s instructions. I am grateful that I had a strong team between my neurologist and my OB.
- Personal relationships can be tough in the best of circumstances. What advice do you have for NMO patients to manage relationships of all types (love, children, family, friends)?
I married my husband, Jake, before I got sick with NMO. We were married for two months before my first optic neuritis attack. I feel like we actually grew closer, due to NMO. We know we need to be strong for each other & for our son. When I was in undergoing my plasmapheresis, Jake stayed by my side as often as he could. When I lost my vision completely, he would read to me. He read the complete Twilight series & Hunger Games series aloud to me during treatments. He was not a fan of Twilight at all, but he did it for me, & I love him even more for doing that! To this day, he continues to read aloud to me when I am hospitalized or sick at home. I love spending this quality time together. Jake also knows me well enough to not even have to ask how I’m feeling. He can often detect if it’s a good day or a bad day by observing my behavior. When it’s a bad day, I can always count on him to step up & take over the extras.
I really don’t know where I’d be today, if I hadn’t met Jake prior to NMO. I think it would be very scary to put myself out there knowing that at some point I would have to disclose my disease & my visual impairment. I would worry if I would be accepted with those flaws & how supportive that person would be. Words cannot express how thankful I am for the loving & supportive husband I have.
My friends & family are concerned about my health, but to be honest, they haven’t been as supportive as I would have liked them to be. My Mom has been amazing & has been by my side through everything. However, my health has also made many people feel uncomfortable. They didn’t know how to deal with what I was going through. They didn’t know what to say when they saw me or what to do to make my life easier – – so they didn’t do anything. They thought that by leaving me alone, I was finding time to recover & rest. However, I saw it as abandonment, and this is something I am still trying to get over with to this day.
I shouldn’t say all of my friends and relatives are like this. I do have a few who have been extremely supportive, too. My Mom is amazing. She has been with me every step of the way. She’s the one who helped me get diagnosed correctly with the Mayo referral. She goes to all of my appointments and most of my treatments as well. I could not have gotten through all of this without her!
- What keeps you personally motivated and what keeps you fighting?
My son. I live for my son. Even now while thinking about him and the joys he adds to my life is bringing tears to my eyes. I love the way he hugs me. I love that he is a constant chatterbox. I love that he puts plastic cups over his ears in the bathtub when I’m washing his hair. I love when he says “Mama.” I love watching him create traffic jams with his cars and build car dealerships with his legos. I just can’t get enough of this kid!
My teaching is also a huge motivator in my life. I am very invested in my job & enjoy going in to work every single day (except for in-services!) Music is and always will be my passion & to have the opportunity to share this with all of my students is a blessing.
- Tell us a moment when NMO embarrassed you (if ever).
I get frustrated with my vision loss. I have to have my husband double check my make up – that I didn’t leave smudges, etc. I struggle telling the difference between colors, such as navy blue & black. I once went to school with navy blue pants on that didn’t go with my top at all. Unfortunately, it wasn’t mismatch day, either. If I have a food stain or toothpaste on my clothing, I am unaware & therefore walk around like that all day. On school field trips, I might walk into a door or stumble on nothing in front of my students. I think that’s the worst part – is fumbling due to vision in front of my students.
- What do you think needs to be the next steps in finding a cure for NMO?
At my last Mayo appointment, I asked about the advances in NMO research. It sounded like researchers are more interested in finding better maintenance treatments than finding a cure. I was a bit disheartened by this information. I think that the doctors need to collaborate more on the global level. I often hear new research ideas or treatments from the UK & other countries & wonder how often this information is shared with my own doctors. This is a global issue that can be solved with many minds put together. I will also continue doing my part in making people aware of the need for an NMO cure.
- Finish this sentence. Courtney is _____________.
a wife, a mother, a teacher, a musician – I do not let NMO define who I am.