OCTOBER 2013 FACES E-NEWSLETTER
- CEC Staff Spotlight: Janelle Rodriguez, RN
- No Obstacle Too Big to Overcome
- Take Courage, Atlas!: A FACES College Scholarship Story
- Recipe of the Month
- HEP: Human Epilepsy Project
- Mia the Ballerina
- Fundraising Corner : Paddling Towards Epilepsy Awareness
1) CEC STAFF SPOTLIGHT : JANELLE RODRIGUEZ , RN
Janelle Rodriguez has been a nurse for 13 years with experience in both pediatric and adult care. She graduated from New York City Technical College with an associate degree in nursing and continued her studies graduating with a B SN from SUNY Downstate.
Janelle is 1 of 3 nurses at the NYU Comprehensive Epilepsy Center. She has been with the center for a year and half. She is happy to be involved with a team of world class physicians and clinicians that give excellent care to patients. “Together as a team, we treat each patient way beyond their epilepsy and provide endless effort to one day find a cure ,” said Janelle
2) NO OBSTACLE TOO BIG TO OVERCOME
By: Courtney Lipson
One slam, then another, and just like that, two twelve year olds are on the porch hysterically crying. Within seconds, the bunk full of joy and laughter turned into an area of silent confusion. We found out the hysteria was triggered by a girl who made a joke re-enacting a seizure. Both of the girls who left crying had family members that had seizures and battled epilepsy. Campers and other counselors went outside to try and comfort the two girls, but no one could get through to them. I could though. I too have a family member that battles epilepsy. That family member is my twin brother.
Having a twin brother with epilepsy has taught me countless lessons and has played a big role in making me who I am today. Aside from the obvious medical knowledge I’ve gained, I’ve learned a lot about the world and how to deal with adversity.
Courtney and her twin
Seeing someone so close to me deal with something so hard, for more than half of his and my life, has made me more sensitive towards all people around me. Like the situation with my campers this summer, people accidentally slip comments out about having seizures, as well as other illnesses, and there is no knowing what the comment’s effect will have on the surrounding people. I have learned not only to really filter what I say to make sure I don’t offend anyone, but also to help people hurt by insensitive comments. I can truly say,“I understand what you’re going through” and help the person through it.
More importantly, I have learned to appreciate the many blessings in my life. I have never wished that I had a disease like epilepsy, but I have in the past wished for the attention my brother got from my parents. When I was younger and the epilepsy was new, we were learning new things about it every day . It was inevitable that my brother would need more attention than me. I got jealous a lot and thought it wasn’t fair. I also didn’t feel like I had “permission” to express my feelings since everybody was already dealing with so much. However, I have come to realize that while I sometimes needed my parent’s attention and could not get it, it is also a far greater unfairness that even after trying all different medications, doing severe diets, having devices implanted in him and having open brain surgery, my brother is still having seizures.
Having a twin with a serious health issue has also taught me to be more independent. Sometimes I needed my parent’s help or attention and felt bad asking for it. I though t that complaining to them about something was selfish because nothing could be as hard as what my brother was going through. Because of this, I learned to do thing on my own at a young age.
Most importantly, I have also learned that nothing is impossible and every situation depends on what you do with it. People have a misconception that having an illness can define one’s life. I’d have to strongly disagree with that and see my brother as living proof of the opposite. I have watched my brother do things no one would expect someone dealing with epilepsy could do, such as bungee jump off a 300-foot bridge, become an expert skier, and play varsity lacrosse. I’ve always been told that I am fearless. I’ll go on any rollercoaster, go down any ski run and surf any wave. While some might term me “brave,” I have a living, breathing example of real bravery as a twin. Seeing him go outside his comfort zone to do the unimaginable things he does, I approach my life with a view that there is no obstacle too big to overcome.
3) TAKE COURAGE, ATLAS !: A FACES College Scholarship Story
By: David Rodriguez
When my parents told me that I would be starting school, I didn’t understand them. School? I thought to myself. What’s that? Although confused, I still obeyed my parents when they told me to go to sleep early. At 6:30 A.M., when my brother woke me up, the first thing I asked him was, “Why are we waking up so early?” My brother looked at me in disbelief and replied, “To go to school.” After dressing myself, I ate breakfast slowly and anxiously looked out the window as my mom drove. I began to become more anxious as my mom and me got down and finally entered the classroom. Upon entering the classroom, my anxiety became fear – fear that was worsened when my mom began to explain that she had to leave. I started to cry and, in my desperation, began to plead with her. “Can’t you stay with me?” “No,” my mom responded with an encouraging smile, “but I’ll come and pick you up!” Worried, I begged my mom to stay, and she did. She continued to stay, in fact, for the next 13 school days from ten in the morning until two in the afternoon.
While my classmates were able to eventually adjust, I was the only one out of my entire class that was still begging my mom to stay. And every morning, as we would get closer to school, my mom had to continually comfort me, saying, “You’re going to be fine. You’re going to see your friends! And your teachers! And you’re going to learn!” Finally, on the fourteenth day, my teacher stepped outside of the classroom with my mom and urged her to stop staying – I had to learn to be independent! When my teacher and mom entered, I knew what would happen. My mom said goodbye to me. I was forced to face the reality of the situation. And, overcome with sadness, I started to cry. This time, however, my teacher decided to ask the class, “Who wants to be David’s friend?” Ugh, I could feel everyone throw a stare at me, and I was burning with embarrassment. As expected, everyone raised their hand, which I felt they only did because the teacher expected them to.
But, through it all, there was one, constant force giving me the strength to continue: my mom... As school continued, I tried to adjust. I tried to be nice with the teacher. I tried to talk with my classmates. And I tried to do well in school. But school frustrated me each day more and more; tired, I firmly decided that I hated school. I just couldn’t understand why my classmates, who had said that they wanted to be my friend, couldn’t make me feel special. I just wanted to be a part of their group. Maybe they could even have asked me themselves to be their friend, or they could have invited me to sit with them at lunch, or play with them during recess. And when I talked to them, why couldn’t they respond with more excitement? Hadn’t they said that they wanted to be my friend?
But, through it all, there was one, constant force giving me the strength to continue: my mom...By the time first grade started, it was easier to continue with school. I knew most of my classmates and was comfortable at school, but I was still struggling with English. See, I grew up speaking Spanish and didn’t learn English until I was four. Because I didn’t study as much as I should have , I also struggled with spelling and was one of the final students to learn how to read. In the second grade, I had trouble remembering the difference between a prefix and a suffix and a synonym and an antonym. Near the end of second grade, I scored so low on a reading speed and comprehension test that I was one of two students that had to retake it.
But, through it all, there was one, constant force giving me the strength to continue: my mom...Third grade began and we had to take the same test to measure our current reading speed and comprehension level. I did poorly, as always, but this time I became conscious of my actions. In that moment I came to believe that if I really wanted to improve my score, I could. On that same day I myself decided that I would read an entire hour after school. Naturally, when the time came to take the next test, I improved astronomically. I realized that if I continued to concentrate my efforts on school, I could succeed.
Throughout high school, I continued to apply my self. However, sophomore year I began to notice that I would often have violent spasms in my arms in the morning when I would wake up. These spasms finally led to a full - blown seizure, and a doctor misdiagnosed me – a wrong diagnosis that caused doctors to not prescribe any medications for me. Now as I sit reflecting upon this, I am very proud to say that despite having four more seizures because of the doctor’s wrong diagnosis I remained focused on my final goal of becoming a teacher.
Now that I am beginning college, I am taking five, three - credit hour classes – math, English, history, public speaking, and Introduction to Film – and am majoring in English, specifically rhetoric & composition. I am involved with Best Student Essays, a magazine that the university publishes, the Honors Student Association, Toastmasters, a club where members refine their public speaking skills, and I plan to tutor others at the Albuquerque Writing Community.
When I tutor others I try my best to remind myself that I must communicate to the student I’m tutoring that I genuinely care about them. In doing so, I am creating the habit of reminding myself at all times that the work I do is for my future students. As a recipient of the FACES Scholarship, a scholarship that I found through cappex.com, it means that I must continue to keep my final goal of becoming a teacher in mind in whatever I do so that I can help to improve the lives of others. By strengthening and supporting the next generation I may even educate a couple neuroscientists that could help find a cure for epilepsy! And, with this, I end: To the children who I will educate and to those who struggle daily: Conquer your fears before your fears conquer you. And parents, remember that to your children you are not their world, you are their Atlas. God bless you all.
4 ) RECIPE OF THE MONTH
TURKEY SAUSAGE RAGOUT WITH SPAGHETTI SQUASH
This is a hearty meal with a light calorie load! Spaghetti squash is the perfect substitute for pasta and has a sweet and refreshing flavor. Both Cumin and Fennel seed give this dish a hint of Indian flavor that changes this often Italian associated dish. Fennel seed and cumin are often found in Mediterranean style dishes so they are natural spices to partner with sausage, but the cumin in this dish really brings the dish from western to eastern Mediterranean. Cumin naturally contains minerals such as iron (1 tbsp has nearly 25% of your recommended intake), magnesium and copper which are all critical to the body’s daily functioning. In addition, cumin has been said to have antioxidant properties and is being studied for its potential role in cancer prevention.
Serves 4 - 5
Note: 1 spaghetti squash will yield about 5 cups of squash Nutrition Facts (based on 4 servings): 330 calories, 15g fat, 24g carbohydrate, 5.5g fiber, 21g protein
1 whole spaghetti squash (4 lbs, medium size)
1 tablespoon olive oil
½ large onion (diced)
2 carrots (diced)
2 celery stalks/hearts (diced)
¼ teaspoon cumin
¼ teaspoon dried fennel seed
1 lb sweet or hot turkey sausage (or chicken sausage)
3 garlic cloves (minced)
½ cup dry white wine
1.5(15 oz) cans tomato sauce
(I think Hunts has the best flavor–get the no salt added if you can find it)
Cook the spaghetti squash as follows:
- In the oven: Cut in half lengthwise, scoop out seeds. Place rind side up on a pan and bake at 375 degrees for about 30 - 45 minutes until tender. Let cool. Pull “spaghetti” like strands from the squash by pulling downwards with a fork.
- In the microwave: Cut in half lengthwise, scoop out seeds . Place in a microwave safe bowl and microwave 6 to 8 minutes (let stand for a few minutes afterwards). Pull “spaghetti” like strands from the squash by pulling downwards with a fork.
- While spaghetti squash is cooking, begin the sausage ragout. Heat olive oil in a pan and add onions, celery and carrots and cook until tender (about 3 minutes). Add the cumin and the fennel seed.
- Begin to remove the sausage from the casing (cut with a sharp knife lengthwise, and pull meat out). Add the sausage meat to the pan, breaking up each sausage into little bits with a spatula or spoon. Dispose of the casings.
- Allow the sausage to totally brown and cook. Add the garlic. When the pan begins to get hot and most of the oil is absorbed, add the white wine making sure to scrape any bits from the bottom. Allow the wine to reduce by half.
- Once the wine has reduced, add the tomato sauce. You can add as much or as little as you want depending on how “saucy” you want your meal to be. Allow to simmer for about 3 - 5 minutes. Add spaghetti squash and coat thoroughly.
5 ) HEP
By: Rachel Hennessy
For patients with epilepsy, one of the most frustrating experiences is the unsettling feeling of uncertainty. Patients often don’t know why they have epilepsy, whether a given medication will work, or when their next seizure may come. Not knowing the answers to these questions creates significant stress for people with epilepsy, and considerable frustration to the doctors who try and help them. At present we have no tests, nothing we can measure, to answer these types of questions.
But what if we did? What if we were able to perform a blood test that predicted whether seizures would recur? What if we had a urine test that determined which seizure medicines were most likely to work, and least likely to produce side effects? What if MRI findings or questionnaire results could help us predict whether someone with epilepsy would develop problems with mood – or remain happy and healthy? Such tests, called "biomarkers," do not yet exist for epilepsy. However, the Human Epilepsy Project is hard at work attempting to uncover these biomarkers, which could be used to improve treatment for patients with epilepsy in the near future.
The Human Epilepsy Project is a new multi - center research study, funded in part by FACES , which follows patients with epilepsy over a three - year period, starting from the time they are first diagnosed. HEP patients provide a variety of data, including blood and urine samples, specialized EEG and MRI tests, and daily seizure and medicine tracking on a study iPod (which patients get to keep!), in the hopes that this information will help the researchers understand how patients become seizure free and why medications work differently in different people. HEP researchers at the NYU Comprehensive Epilepsy Center are working alongside researchers from 25 top institutions across the globe, and as the study continues into its second year, the progress made this far has been exciting.
HEP study participants are also excited to be a part of this groundbreaking research. They want to do whatever they can to help solve the unanswered questions that arise from a diagnosis of epilepsy. One patient hopes his participation will “further better [his] own treatment and that of others in the future,” while another acknowledges he has “just as much motivation as anyone else in understanding why individuals suffer from epilepsy.” In addition, some patients have found participating in HEP to be beneficial. The iPod seizure diary allows patients to accurately record and monitor their seizures over time, to look for possible patterns or triggers of seizures. The iPod can also generate reminders for patients to take their medications or refill their prescriptions. As one patient put it, the diary became “part of [his] day-to-day routine, making sure [he is] staying connected, being on top of things.”
Through the combined efforts of study participants and researchers, the Human Epilepsy Project is bringing us closer to a better understanding of epilepsy and its treatment.
If you have recently been diagnosed with epilepsy and are interested in the HEP study, please contact the study coordinator, Rachel Hennessy, firstname.lastname@example.org for more information.
6 ) MIA THE BALLERINA
By: Amy Dill on King
Mia dancing with her
Mia is a tall, blonde 10 year old girl who has dreamed of being a ballerina for years. Last week, her dream came true when a Charlotte, NC, dance teacher gave Mia her first ballet lesson - complete with leotard, tights, ballet shoes and a bun in her hair. Two years ago, Mia traveled to NYU to meet Dr. Devinsky because the five medications she was taking weren’t controlling her partial - complex seizures. Dr. Devinsky, and eventually Dr. Howard Weiner, discovered two seizure foci-one in the frontal temporal lobe and one in the upper parietal lobe. Mia’s doctors in Charlotte wanted to perform a hemispherectomy on Mia and predicted that she would lose function in her right side (she already weak on the right side due to Cerebral Palsy). Dr. Devinsky and Dr. Weiner predicted that with their proposed resection, removing only the seizure foci and leaving the rest of the hemisphere, she would retain the function she had on her right side. Our family decided to go forward at NYU. Almost the moment she came out of surgery, our family noticed a clarity about Mia that we had not seen in years. She not only didn’t lose function on her right side, she gained function - performing a pincer grip for the first time AFTER surgery. Two years later, Mia is a seizure - free, busy fourth grader working hard to catch up with her peers and to overcome her language delays and cerebral palsy issues. And, last week, her dream came true. Mia is a ballerina.
7 ) FUNDRAISING CORNER : PADDLING TOWARDS EPI LEPSY AWARENESS
On Saturday, August 24, 2013 the Fifth Annual Uncle Richie Farrell Memorial Stand Up Paddle event took place once again in Breezy Point, and for the first time, the proceeds were donated to support the programs here at FACES. For four years prior, Dennis Farrell and his family, wife Donna and their sons Damien and Dylan, put on this paddling event to honor and remember their Uncle Richie. Dennis thought it would be a great idea to also dedicate the fifth annual event to epilepsy, and his friend Mary Leonard suggested they raise funds for FACES.
Mary believes it’s important to bring awareness to a community where epilepsy is not discussed often. She said many people joined the race specifically this year because they have been affected by the disease, yet no one even knew.
Thirty seven paddlers as well as many other spectators attended the event at the Rockaway Point Yacht Club Cove in Breezy Point. The event opened with a traditional Hawaiian circle and prayer. First, a group of elite paddlers left the beach at 10:00 am for an 8 mile race. Following that group was a 3 mile fun paddle, and ending the event was a short distance children’s paddle. Local business and individuals also provided prizes for the event.
Dennis Farrell and his family have had a significant impact on the community. Mary recalls surfing with Dennis one day while talking about his idea for this event, and she said “One man’s quiet thought can put big things in motion.” Not only did the event open up the opportunity for members of the community to discuss epilepsy, but it raised $7,000 for the mission of FACES.
BELOW ARE PICTURES FROM THE EVENT: