While we were busy developing sourdough starters, establishing victory gardens, cancelling vacation plans and generally going stir crazy, the World Health Assembly gathered and took a moment to address the global impact epilepsy is having on the health of people around the world.
The WHA Member States suggested that much of the neurological disease burden is preventable, provided that broad public health responses in maternal and newborn health care, communicable disease control, injury prevention and cardiovascular health, are implemented. Challenges and gaps in providing care and services for people with neurological disorders exist worldwide, and more so in low- and middle-income countries.
Epilepsy and other neurological disorders are the leading cause of disablity-adjusted life years
Epilepsy and other neurological disorders are the second leading cause of death worldwide
Despite the low cost of effective interventions for epilepsy (estimated at less than US$ 5/per person/year), the current treatment gap is over 75% in most low-income countries and 50% in the majority of middle-income countries
The risk of premature death in people with epilepsy is three times higher than in the general population
Over the past 30 years, the absolute number of deaths due to neurological disorders has increased by 39%
The action plan on epilepsy and other neurological disorders will address these gaps through integration of prevention, diagnosis, treatment and rehabilitation for neurological disorders within primary health care, which is critical to achieving universal health coverage.
What happens when it’s too much? When all of the things we are experiencing just feel like too much? When the unexpected international circumstances combined with the seasonal changes and, oh yes, that medical condition, feel like they more than we can handle? Sometimes it helps to remember just how resilient we actually are.
There’s been a lot happening this year. A lot. No question about that. We are getting into winter and in many places, that means an increase in SAD (Seasonal Affective Disorder). It’s colder outside and more rain (or snow). Less sunshine. Month 8 of COVID-19 and the isolation. This is on top of all the things that we experience every day: finances; employment; relationships; friendships. Hobbies that I now have more time for (like writing and painting) suddenly seem like they are becoming an expectation. I start to feel like I have to do these things.
In the course of my day, it’s getting harder to find time to run. When it’s not raining (because I actually really dislike running in the rain, despite living on the coast), it’s also too dark before AND after work for me to run alone. I have to time my lunch breaks perfectly to get outside at all. The weekends are the only time I have the opportunity to spend a few hours running. The reality there is that it becomes less motivating to go out. As much as I want to go, I have to acknowledge that it’s not particularly safe to do trail running in the dark alone. Hence, self-imposed feeling more obligations to hobbies like painting and writing.
On Eating Well
My eating habits are worse than they have ever been. As a result, I just signed up for one of the meal-delivery services where they make a meal plan for the whole week and deliver it. It starts next week and I plan to try it for a month. It’s expensive but it will mean the difference between me eating every day and sometimes going a couple days without eating. (I go very infrequently now to the grocery store… much less than I even did before).
On Screen Time
Social media, streaming services, video chats. Endless options. I haven’t even owned a television before because prior, I spent more time being active than needing a screen. A couple years ago I bought a cheap laptop just for the purpose of blogging (I’m using it right now). The world is a combination of overstimulation and under-stimulation at the same time as imposing entirely new lifestyles.
The force of external motivation can only move us forward so much. So… what happens when it’s too much?
This is the time when we have to make a very pointed effort to inspire ourselves.
As many times as we have heard this during the pandemic, we are all in this together. The season changes, well, every year…so it will be different in a few months and the sun will come back. We have a significant medical condition and we are managing to get through all of these circumstances even with that. We did it before and we will continue to do so.
Things are “too much”. Too much. Yes, yes they are. So are we. We are much too resilient, much too determined, much too feisty and we haven’t been permanently overloaded by our permanent medical condition. We aren’t going to let cold weather and a pandemic ruin our irrepressible spirit.
Are you interested in developing Neurotherapeutics? Do you want an opportunity to network with leading experts in academia, industry, advocacy, and government? Do you just want to know more about the current state of therapeutics in several neurological disease areas? Here are several opportunities to take your career to the next level:
1. Training in Neurotherapeutics Discovery and Development for Academic Scientists
Course Fees: FREE to apply, FREE to participate for accepted applicants (fees covered by NIH Grant)
This 3½-day course is designed to introduce academic researchers to the principles of neurotherapeutic drug discovery and development, including the identification of a lead compound and IND enabling studies. The course considers the discovery and development of small molecule therapies and also includes considerations that apply to biological therapies, such as antibodies, antisense oligonucleotides, gene therapies and cell therapies. The course will also address the unique challenges inherent in developing treatments for nervous system disorders and will address the particular challenges that academic neuroscientists are likely to face in planning and conducting drug discovery research.
You will find the course useful if you would like to learn how molecules to treat disorders of the nervous system are identified and evaluated prior to entering clinical trials. The course will be especially relevant if you conduct basic neuroscience research and would like to compete for the many translational grant opportunities that are available.
The application period for the 2021 course offering is now open. The final deadline for applications is December 14, 2020. Course Directors expect to notify applicants of the status of their application in January 2021. A maximum of 45 students can be accommodated.
The ASENT2021 Annual Meeting is the only unique forum in American Neurology which brings together divergent areas of effort from industry, academia, advocacy and government on one platform with open dialogue.
ASENT is pleased to welcome our faculty who include executive-level biohealth industry leaders, chairs of neurology and clinician scientists from leading academic institutions from around the world, chief scientific officers from advocacy organizations leading the way in funding neurotherapeutics and leaders from NIH, FDA, NINDS and many other agencies.
The meeting will take place virtually from Mon. Feb. 22 to Thurs. Feb. 25 2021 and the registration fee for graduate students, medical students and postdocs is FREE (yes, free!)!
COVID-19 and the nervous system as a therapeutic challenge
RNA editing and CRISPR technology: basic approaches and treatment implications for neurologic disease
New and Emerging Therapeutics for Epilepsy
Dystonia: Genetics, pathophysiology, new targets and treatment
Obstacles and Opportunities in Alzheimer’s Disease Neurotherapeutics
Epigenetics in Neurodegenerative Disorders
Emerging therapeutics in NeuroOncology
Brain Organoids as Models of Neurological Disorders and Treatment
Parkinson’s Disease New Approaches
Click the link below to register and find more information about the conference.
Event Fees: $25 for standard abstracts; $50 for late breaking abstracts
ASENT2021 offers several pipeline (rapid 5 min talks highlighting your research) and virtual poster presentations. So if you have some exciting data to share on your neurotherapeutic research, even if you have already presented it at another scientific meeting, ASENT encourages you to submit an abstract (only $25.00!).
Presenting your work will provide an opportunity to interact with experts to gain experience and increase your network! And potentially get more citations if your work is published in peer reviewed journals!
I was 24-years-old spending my Saturday at local surf break with Josh, a lifeguard who would have prospered on the show Bay Watch. (Beautiful abs – I hope he reads this) It was another sunny day in Pacific Beach, where I had spent the last few years teaching surf classes and living with my best friends. This was our third date and I was trying pretty hard to keep my cool. The night before I’d gone out drinking and I was feeling especially strange. I felt like the world was spinning in all sorts of directions and I couldn’t come up with the words I wanted to say. The coffee that morning didn’t seem to sit right either.
I’d been drinking coffee all through college, but it seemed to randomly give me such a high that I felt like my head was above the clouds or on another planet altogether. As this high began to wear off I could feel my brain vibrating and lose the ability to concentrate. But I would never tell anyone that. And I was definitely addicted to caffeine. No one would understand the feeling, and even doctors had attributed it to stress.
Life on track
Some background: at this point in time, my life was going according to the timetable I’d set for myself at age 18: 1) Bachelor’s degree at San Diego State University, 2) English Teaching Credential program, and 3) travel around the world teaching English as a Second Language. I was a short while away from moving to China, where I’d accepted a job teaching ESL near Hong Kong. My dreams were finally turning into reality, and I felt on top of the world. Not to mention that I was about to surf with a hot lifeguard.
In and out of consciousness
Wetsuit on, board in hand, we started walking towards the water, until that strange feeling arose. I felt my brain vibrate and my vision began to blur, so I put my board down on the sand and sat alongside it. What happened next I don’t remember, but according to Josh it lasted 10-15 minutes. I woke up on the beach with no memory of where I was, and with a horrible pain in my right shoulder.
During this first Grand Mal seizure, I had been hitting my shoulder so hard on the sand that I fractured my rotator cuff. Next thing I remember is crying deliriously as Josh and some EMTs helped me into the ambulance. I still remember the horrified look on one of the EMT’s faces when I woke up on the way to the hospital screaming and demanding they tell me where I was and why my shoulder hurt so badly.
The next time I woke up, was after surgery was performed on my shoulder. The doctor told me what happened, and that I most likely have Epilepsy and would need an EEG. With a one-track-mind, I asked the doctor the first thing that came to me: Will I surf again? His answer was no. I soon realized I would no longer be going to China, either.
When old friends don’t show up
Surprisingly, the hardest part of it all was learning that my best friends/roomates, one who I’d known since kindergarten, weren’t going to be part of my timeline any longer, either. About 3 days after my seizure, I was elated to finally hear from them- as Josh had told them everything that had happened on our date. What I heard on the phone changed my view of our friendship. They were calling to let me know to get my “sh**” out of the apartment. “Your food in the refrigerator stinks, and one of your suitcases is still in our living room.”
My brain wasn’t working very well at the time, so it was hard to respond to my friends. I just listened and said “ok”. Shortly after, my mother moved my stuff out of the apartment for me. I haven’t heard from them since. This flipped my world upside-down more than anything. How many of my friendships were like this? Did I have bad judgement of people in general? Looking back, what I experienced was heartbreak leading to social anxiety. I didn’t spend much time with other women my age for several years following- except for Mari.
It’s time to make new friends
I met Mari in a painting class. While moving back in with my parents, testing out debilitating drugs, and being unable to drive, my mother enrolled me in this class at a local community college. Mari had just moved to CA from Venezuela, and her life had recently been flipped upside-down as well. I slowly opened up about my diagnosis. I helped her with her English, while she helped me with my paintings and took me with her to walk her dogs. She showed me that it wasn’t women who I needed to avoid; it was unempathetic people.
A change of scenery
Fast forward 6 months, and I found an alternative route for the timeline I had made for my mid-20’s. I accepted a job teaching ESL to refugees in Seattle, Washington. While I was still having petit mal seizures and testing out different medications, I had an incredibly hard time putting my life on pause. With the support of my parents, I packed up to things and moved to WA for 10 months. It turned out to be the best thing I’ve ever done.
Because I’ve always been an ocean girl, I thought that I was moving to Seattle for the job, not for the environment. Boy was I wrong. After a few boring weekends I found hiking groups on the Meetup app, where members would often offer to pick me up at 5am and lend me their snow gear to climb different mountains throughout the state. Given, I only joined on weekends that I was feeling well (no dizziness nor “brain vibrations”). I must admit, the bad weeks made days that I climbed to the top of mountains in the middle of nowhere in deep snow feel like miracles.
On showing up for yourself
It wasn’t all fun and games. According to my seizure journal I was having episodes every couple of weeks. I did another at-home EEG, and often felt very alone during weeks that I was suddenly having seizures again. The early sunsets after daylight savings DID NOT help with this sadness.
Out of loneliness and desperation, I downloaded the Bumble dating app. Believe it or not, my first date was a miracle (this is not a Bumble pro-mo). I met Christian at a coffee shop on a Sunday. We made small talk, and at some point, he asked me why I couldn’t drive. I panicked inside. Do I tell men I’m dating that I have Epilepsy?!?! I am such a bad liar. So I told him. Turned out, Christian had just moved back home to WA after having a Grand Mal seizure in Spain, where he’d been teaching ESL for over 2 years. I’m not sure if there’s a God, but if there is, God was letting me know that I should be honest about my diagnosis when it comes up, even in my dating life.
Through my time in WA I proved to myself that even with my new diagnosis, I could be the independent, spontaneous woman I want to be. I slowly dissolved the shame I had felt in my diagnosis: In the beginning, I honestly felt like my Epilepsy must somehow be my fault. And I slowly accepted that I will not be able to live in other countries until I fully understand my mind and body. And I still have a long way to go.
Life on a new track
Two years later and I am back in San Diego with another roommate. I bike to work at my part-time job at an Elementary School, eat too many tacos, and I’m even back to surfing. While my life did not go as planned, knowing the awful feeling of seizures makes every day I feel alright an opportunity to make more memories. I understand that many people with Epilepsy have daily seizures, and still find a way to keep some inner peace. When I am feeling down, I think about these strong people. Everything is relative, and every day is different. This may sound obvious, but understanding it and accepting it deep down is the only way to stay patient while testing out personality and mood-altering medications.