The Epilepsy Foundation Eastern Pennsylvania recognizes the unique needs of young adults diagnosed with epilepsy in our community. We aim to provide our young adults with opportunities to socialize, educate, volunteer, and gain independence. This page covers tips for teens with epilepsy, social outings offered by the EFEPA, Transition Resources for Young Adults and details about the EFEPA Youth Council.
The EFEPA is excited to host a Young Adult Retreat on May 20-22, 2016. Over the weekend young adults like you will have time to chat with friends who understand the challenges of being a Millennial with epilepsy. Doctors and nurses will join us to answer some of those tough questions there just isn’t time for during office visits. We also have specialists who will connect you with dynamic stress-busting techniques.
Of course, there will be plenty of time for fun and relaxation in the beautiful woodsy-setting of Camp Green Lane. This exciting weekend will leave you feeling refreshed and energized!
Featured Speaker: Thomas Dixon, founder of ME.mory
Q&A with Epilepsy Specialists
- Camilo Gutierrez, MD (Temple Comprehensive Epilepsy Center)
- Bethany Frasch, MSN, CRNP (Hospital of the University of Pennsylvania)
- Caitlin Rice, MSS, LSW (Children’s Hospital of Philadelphia)
Communicating openly with your neurologist is an important step for all of us but often there isn’t enough time during your checkups to get into the nitty gritty about being a 20-something with epilepsy. Epilepsy specialists from Temple, Penn and CHOP will be on hand to answer those hard-to-ask questions. Don’t be shy! They are prepared to help you navigate the muddy waters of being a young adult with epilepsy.
- Yoga and Mindfulness with Adrienne Hermes, LPC and Certified Yoga Instructor
A recent study published by the American Academy of Neurology found evidence that mindfulness-based therapy significantly improves quality of life in patients with drug-resistant epilepsy. Adrienne Hermes is a licensed counselor and certified yoga instructor who grounds her work in the principles of mindfulness. She will introduce us to the basics of yoga and mindfulness as we explore techniques to center ourselves amidst the ups and downs of life with epilepsy.
- Art Therapy with Megan Cormier, MA, ATR-BC, LPC
What do you do when you just don’t want to deal with epilepsy and the challenges of young adulthood? For some, the answer is to draw, paint, or make a craft. Megan Cormier, art therapist @CHOP, has a great project planned to get the creative juices flowing – even if you don’t label yourself as “artistic”! One of the participants in our Studio E: the Art Therapy Program reflected on the task assigned by Megan “to paint without thinking” with the following: “As someone whose brain is always on the move, it was extremely difficult and then a sweet release.”
- Dance Movement Therapy with Jillian Glace, Dance Movement Therapy student at Drexel University
Feeling in control of one’s body can be challenging when living with epilepsy. Our bodies take over in ways that we cannot always predict nor understand. Dance Movement Therapy helps to provide a healthy, comforting environment in which to explore and be empowered by your body’s capabilities. We’ll ntroduce the theory behind DMT while allowing participants the opportunity to explore how expressive movement can be used to address uncertainty of when the next seizure may occur, disorientation in the postictal state, and frustration surrounding the lack of control associated with seizures.
- Self-advocacy and Teamwork with Gaines & Denise Taylor of TAI, Inc
What makes you unique? What inspires you? Where do you want to be in 5, 10, 20 years? Denise and Gaines Taylor of TAI Inc will utilize the principles of values-based leadership to help you explore these questions. They will also lead us in interactive team-building exercises to build group camaraderie and encourage positive socialization whether at work or at play.
If you have some questions, call or email Liz Beil at email@example.com, 215-629-5003. We can also assist with transportation needs.
Like all phases of life, being a teen is not without its host of difficulties. Teens with Epilepsy face different challenges than most of their peers. Having a place to find answers to questions about driving, dating, school, alcohol and other important issues is helpful in navigating some of these issues.
Ever feel like you don’t want to explain your seizures to their classmates, teachers, coaches, or friends? Or you try, but they just don’t seem to understand? Not knowing how each person will react can add to the complication. Trying to balance it with school, homework, sports, activities, family responsibilities and friendships can be hard enough. Then there’s that “never knowing” fear of when the next seizure could happen. Sometimes it hurts, or it’s frustrating, having to deal with epilepsy. It can be even harder to accept if it impacts your ability to get a driver’s license. It can be just plain annoying. Feeling the weight of an epilepsy diagnosis, the impact of medications or surgery, can often seem like too much. But that doesn’t mean you’re alone. We believe that through education and awareness we can help take the burden off your shoulders.
The EFEPA can come speak at your school about seizures so that your classmates and teachers have a better understand of epilepsy. Or, we can help connect you with other teens facing similar challenges who can provide friendship and support. We’re available to answer questions you might have about going to college, using public transport or living on your own. Something else you need help with? Even if we can’t help, we can point you in the right direction. Just remember–having epilepsy is nothing to be embarrassed about, even if it sometimes feels that way. Over 2 million Americans have epilepsy just like you.
If you’re a teen with questions about sexual and reproductive health, a great resource is Girls with Nerve. Check out their website for information about talking to your doctor, dating and more.
For information on scholarships, click here.
Parents: Do you have questions about transitioning your teen to adulthood? View the presentation below, delivered by Bruce Sham, CPA from First Financial, on steps you can take to facilitate the process.
Our social activities offer young adults the unique opportunity to form relationships with their peers which may otherwise be unavailable. These events also help grow a sense of community that offers support and understanding, as well as a chance to just have fun. In the past the Foundation has planned events including a bowling party, a mall and movie meet up, and a camp and counselor reunion. Here’s what we are doing now:
- Young Adult Educational Programs
- Mall & a Movie Meet-Up
These are our friends Nicole and Allison. They met through the Foundation and quickly became fast friends. Whether it’s volunteering as counselors together at Camp Achieve or hanging out at one of our Meet-Ups, Allison and Nicole love being there for each other. If you are interested in participating in any of the EFEPA’s social activities for young adults or have suggestions for what you or your young adult would like to do, please contact us at firstname.lastname@example.org or (215) 629-5003.
Fostering independence in our young adults is a priority for the Foundation. Many young adults with epilepsy struggle with getting to places without a license, living away home, and obtaining employment. Independence not only provides a feeling of self-worth, but it is the first step in guiding young adults to become productive members of the global community.
Steps Towards Building Independence:
Getting around without a driver’s license
There are plenty of places that are easily accessible by public transportation. Philadelphia’s public transportation system, SEPTA, is cheap and convenient. It’s always important to plan out your trip ahead of time to help keep from getting confused on the way. Keep reading to find tips on getting around without a car. Visit www.septa.org to learn about public transportation options in southeastern Pennsylvania. Use the “Trip Planner” option to see all of your train, trolley, and subway options. You can find more information on transportation passes and tickets at shop.septa.org. Also, tokens that are good for subways and buses can be easily purchased at any SEPTA station.
The Broad Street Line is great for going to the sports complex that houses the Phillies, Eagles, and 76ers professional sports teams. Philadelphia’s famous Italian Market, Avenue of the Arts, and Center City are also easily accessible on the Broad Street Line subway.
You can access many of Philadelphia’s most popular neighborhoods easily by riding the Market-Frankford Line. Travel quickly between Northern Liberties, Old City, Center City and University City on this line.
If you live outside the city or need to head to the suburbs, there is nothing better than SEPTA’s Regional Rail lines. Most trains run every hour, with more trains during busy hours. Click here to view the Regional Rail schedules.
If you are planning a trip, make sure you first visit https://www.google.com/maps to search for public transportation directions. After you type in your destination click on the picture of a bus to get accurate and step-by-step public transportation directions.
For more information about exploring Philadelphia specifically, visit http://www.visitphilly.com/getting-around/
Need help navigating one of these websites? Not computer savvy? Give us a call and we can talk you through it! Getting to area hospitals Wondering the best ways to get to your doctor’s appointments? Most hospitals have directions online with maps of their campus. Below is a short list hospitals in the area.
A Resource Checklist and Personal Inventory to help individuals with epilepsy, their families, friends and caregivers through the process of transitioning to life after high school. Effective transition planning requires a team of inspired individuals. The young person, their family, school staff, program providers, community members, and friends- everyone must work together to make sure the transition into adult life is a positive experience. Please utilize the materials provided here to facilitate this process. The checklists below are a great way to get started and track progress. The resources have been brought together in one place for your benefit. A successful transition requires determination, patience and a touch of creativity. We want to be by your side through this process, so please explore!Remember, transition is not an event, it’s a process.
A Comprehensive Transition Plan: It’s BASIC
B– Be prepared to make changes to the plan, repeat certain steps, or adapt to changes in health or personality. Remember, transition is not an event, it’s a process.
A– Assessments help the planning process. Obtain current social and educational assessments from school, doctors, therapists, community partners.
S– Set goals and write them into plans with your doctor.
I– Identify some individuals who you can invite to assist you with transition planning (teachers, school nurse, doctor, or local advocates)
C– Commit to Success. A successful transition into adult life requires commitment from the whole team.
There are three main goals to keep in mind as you plan for transition: Higher Education or Training, Employment, and Independent Living. Education It is important to remember that, once a student graduates from high school or reaches the age of 21, she/he is no longer entitled to services through the educational system. That young person must apply and meet eligibility requirements for services provided by adult agencies. That means employment offices, social services, and college office of disability programs.
Quality volunteering or employment is essential for a successful transition. However, transitioning to work starts long before the resume and job interview. Young adults who have practiced workplace social skills, received experience or training, and are motivated to succeed are equipped to take this step. It is important to remember that the job won’t find you, you’ll find the job! Click here to view the Vocational & Educational Checklist
Living an independent lifestyle means making decisions, socializing and enjoying life. Everyone deserves the chance to pursue the life they want and transition planning is a crucial first step. Young people who manage their own medical needs are well on the way to taking charge of their health. A young person who can talk with friends and family about their epilepsy is well-informed and a self-advocate. Click here to view the Medical Management Checklist. Click here for the Personal & Social Checklist Have more questions? Feel free to contact Elizabeth Beil, email@example.com for more information.
Information and checklists were adapted from: “Transition to Adult Living in Pennsylvania” PA Department of Health & “Issues & Answers: Exploring Your Possibilites, A guide for Teens and Young Adults with Epilepsy- Epilepsy Foundation of America.
A job can be an incredibly rewarding experience when you find the right fit. There are many benefits to having steady employment. People not only learn about how to interact with others while on the job, but learn a lot about themselves too. Employment also gives people the opportunity to better the world though working on projects and being involved in the community. Last, but certainly not least, employment pays! Having money to buy the things you want goes a long way to adding enjoyment to an independent lifestyle. Below are resources, tips, and encouragement for those who want to keep their current job or hunt for a new one!
These jobs are primarily found in the restaurant and retail industries. Places like department stores and fast food chains are often a first stop for those looking to gain employment experience. While these jobs might not be a dream job for most people, they are a crucial stepping stone for anyone with little or no work experience.
School-Sponsored Work Experience
High schools and colleges can offer students the opportunity to get real work experience during classes, projects and summer programs. Schools may offer internships, job coaching or credits for volunteer projects. Even if a paycheck isn’t offered, these opportunities are still a great way to get experience and get noticed by those who already work in the places you visit.
As the seasons change, so do the job opportunities! Summer work is a way for students to gain experience while school is out. Outdoor work like lifeguarding, being a camp counselor, or park maintenance are options that will be available. During the holidays, many retail stores, farms and orchards, and restaurants will be interested in hiring extra help for the short jump in business they are expecting. These jobs generally are short term and pay minimum-wage. They offer a great chance to add experience, test out a potential job type and get recognized by those who are already in the field.
The Informal Job Market
There are also job opportunities that are outside of the normal 9-5 workday. Many people let their creative sides do the work by creating and selling their artwork, jewelry, or other crafts. Some take matters into their own hands by offering their skills to their neighborhoods. People who use their knowledge of lawn care, painting, or pets can find satisfying work because the job is also their interest.
Epilepsy Disclosure on the Job
“When do I tell my boss and co-workers about my epilepsy?” “What if I have a seizure at work?” “Am I required to say I have epilepsy during my interview?” “Will my co-workers be able to help me if I have a seizure?” These are questions that are asked all the time. Many people just entering the job market or who are newly diagnosed feel confused about how to talk about epilepsy at work. People may worry that their co-workers won’t understand what a seizure is or what it means to have epilepsy. Everyone’s situation is different, so it will take some time and discussion to decide what the best course of action is for each person. Take some time to complete this blank Epilepsy Disclosure Chart. Consider each section carefully and write your genuine thoughts. Then, view the Completed Disclosure Chart and see how the two compare.
Information adapted from “Issues & Answers: Exploring Your Possibilities, A Guide for Teens and Young Adults with Epilepsy” Epilepsy Foundation of America.
The choice to live independently is one that has a lasting effect on an individual’s life. There are many benefits to having a place to call your own. An individual can decide how to decorate, what to cook for dinner, and how to spend their time. It also requires decision making, increased responsibility, and planning. Often, individuals who increase their independence enjoy life and have more self confidence.
Living independently is a huge step and one that has plenty of benefits. If done correctly, individuals can start following their own unique path in life. If done incorrectly, however, it can be a tough road that may result in a return back to dependent living. Serious planning and preparation are necessary in order to make the move as smooth as possible. Below is a quick reference guide to help start the process of living independently. Before starting the search for a new place, a few questions must be answered: What kind of place am I looking for? How much room do I need? Do I need to be on the first floor? Will I have a pet? Do I want a roommate? How much can I afford to pay? Depending on the answers, a person will be looking for different types of places.
- Once a type of living arrangement is decided upon, it is time to start the search. There are a few ways to search for apartments: online searches, newspaper classifieds, or through a rental agent. Online searches can give you an idea of whats out there, while a rental agent can give personal help and tours of your potential places, but they may charge a fee. It is important to note that one should never pay or move in without reading the lease or legal documents carefully!
- Here are a few tips to help make the choice between potential places:
Type your new address into walkscore.com to see how “walkable” your new area is. The website finds all of the available grocery stores, coffee shops, restaurants, and pharmacies near the address.
If you do not drive make sure the apartment is close to public transportation, so you can get to places you need to go that may not be walkable. Learn more about getting around without a car.
If you are using a rental agent, checking out an apartment complex, or just seeing what is around check out yelp.com for customer reviews. This may help you make your decision about a certain location.
- Finally, individuals must sign a lease or other legal documents before moving in to a new location. It is very important that these be carefully reviewed. If there are any questions, the landlord or property manager should be asked. This web article gives some tips.
Important Safety Considerations
Many apartments or homes must be changed a bit to make them safe for people who have seizures. Many of these changes are simple and do not require much time or money. If significant changes are necessary, be sure to contact the landlord or property manager before making the changes. These simple fixes can result in a significant increase in safety.
- First, do a walk-through of the rooms to spot potential dangers. Note any sharp corners on furniture and counters, floors that can get slippery, or places that can get hot like fireplaces and stoves. Also, places with staircases and pools present unique concerns.
- General Precautions– Floors in all rooms should be covered in a dense pile carpet to protect from falling injuries. Also, pad any sharp corners that may be hit during a fall or seizure. Be sure that all walkways are clear of obstacles.
- The Kitchen– Use appliances that have an ability to shut off automatically when not in use. Try and use a microwave oven instead of a stove for cooking. If you are using a stove try and use electric over gas, as well as using the back burners to prevent burns if a seizure occurs. Plastic containers should be substituted for glass that may shatter.
- The Bathroom– Bathroom doors should open outward, not inward in case of a bathroom seizure. Install a shower seat, non-slip strips, and grab bars in the tub. Use shatterproof glass for mirrors and shower doors. Be mindful of water temperature settings to prevent scalding. Keep the bathtub drain flowing freely and always keep tub water levels low.
- Living Alone– Keep doors securely locked if wandering during a seizure is a concern. Avoid climbing on ladders or chairs. Use a “buddy system” and have someone call each day to ensure that contact is frequent. Pre-program important phone numbers. Subscribe to a personal care hotline such as Lifeline in case of emergency. Keep floors clear of clutter. Place barriers in front of any items that may get hot such as stoves and radiators. When using portable heaters or other appliances, make sure that they can’t tip over and have automatic shut-off switches. Using chairs that have arms can be a small but useful way to remain safe during a seizure.
Are you interested in making a positive impact on the lives of those living with epilepsy? Then the Youth Council of the Epilepsy Foundation Eastern PA may be right for you! The Youth Council will work with staff to create programs and services that are specifically for the youth of our community, as well as raise funds for these programs. What will Youth Council members do?
- Create opportunities for youth leadership and networking
- Apply personal skills and interests to create real world experience
- Make a difference in the lives of people with epilepsy
- Serve as representatives for the foundation’s at area events
- Learn more about epilepsy and what others are doing to help
- Reach out to key political leaders about the importance of epilepsy
We are looking for young adults, ages 18-25, who would like to build leadership and teamwork skills, are motivated to make a difference in their communities, and can communicate our message. Members of the Youth Council will be developing new educational programs, advocacy projects, and fundraising events for youth with epilepsy, their peers, and the community surrounding them. Youth Council members may or may not have epilepsy. For more information on how to get involved, contact Elizabeth Beil at firstname.lastname@example.org.