NEWSLETTERS

“Rise above the storm and you will find the sunshine” - Mario Fernandez
 Bi-Monthly Newsletter -  Second Edition- June/July  2020

Greetings to everyone!

We hope this second edition of our bi-monthly newsletter finds you, your family and friends safe and healthy.  These are indeed challenging times as we continue to provide the same dedicated services to our clients despite the current circumstances. 

We will continue to share information  that will help you navigate the abundant information out there about COVID-19 in regards to those with epilepsy.

We also would like to share more information about our organization and how we are making an impact in the communities that we serve.

Offices continue to be closed due to COVID-19 Virus: 

Epilepsy Services of Southwest Florida always puts the health, safety, and well-being of our clients, employees and stakeholders first.

We are following the recommendations of the local and national authorities and are abundantly concerned for all members of our community.  We have decided to temporarily suspend office visits, events and in-person support groups until further notice due to COVID-19.

All of our staff members are working from home in order to continue epilepsy services without any interruption.  During this time, we will still be available to assist you via email and phone calls. 

Our staff hopes you and your loved ones stay healthy and safe during this difficult time. 

Please call the following numbers or email to connect with your Case Manager:

Fort Myers and Naples office, Bobbi Frasca; (239) 265-6865,email bfrasca@esswfl.org or Gwendolyn Howerton; (239) 275-4838 ext.2, email ghowerton@esswfl.org
Sarasota & Bradenton office, Diane Walz: (941) 762-622,; email: dwalz@esswfl.org
Sarasota office, Alex Batalla: (941) 953-5988, ext. 312, email abatalla@esswfl.org
Other inquiries:
Executive Director, Kevin Lindberg: (941) 953-5988, ext. 303, email klindberg@esswfl.org
Prevention & Education information, Barbara Coleman at (941) 953-5988, ext. 316, email bcoleman@esswfl.org

In the event of an emergency, please call 911, as Epilepsy Services of Southwest Florida is not an emergency service organization. 

Please stay safe everyone!

The Staff at Epilepsy Services of Southwest Florida.

A Message from our Executive Director: 

Epilepsy Services and  COVID-19        

As most of you likely know, we have needed to take some unprecedented steps to continue providing our various services to clients of Epilepsy Services of Southwest Florida.  Our four offices serving eight counties in Southwest Florida have been closed to the public since March, but we have continued to take care of all of those in our program in many ways.

Our first goal was to do everything we could to ensure the safety of clients, volunteers and staff.  We also wanted to make sure we were able to remain responsive and timely with all stakeholder inquires.  We made sure all office phones had appropriate messaging and that calls were forwarded to staff cell phones at all times.  We also wanted  to make sure each client had timely access to their prescription medications as this is most often the key to controlling various types of seizures.  We also wanted to maintain the connection between our neurologists and our clients.    By closing our offices, switching over to a telemedicine format and remaining diligent with our medication distribution methods, I am happy to report that we have achieved these goals and will continue to do so.

It is not yet clear how long we will be affected by these changes and COVID-19.  Rest assured that we will continue to be diligent, responsive, flexible and creative in our efforts to carry out our mission of providing low or no cost services and case management to approximately 530 uninsured adults challenged by epilepsy.

Kevin Lindberg
Executive Director, Epilepsy Services of Southwest Florida

Surviving COVID-19 from a psychological perspective:  Advice for people with epilepsy and their families

Article from Professor Gus A Baker and Professor Steven Kemp on behalf of IBE (International Bureau for Epilepsy)

This article addresses the concerns that people with epilepsy may have about the condition and what practical solutions may be taken to help them cope from a physical, psychological and cognitive perspective.

The impact of the COVID-19 will vary from one person to another.  Surprising for some there has been an improvement in the control of seizures, while for others the anxiety of COVID-19 might result in a deterioration. 

It is important to recognize that Covid 19 is an unusual and threatening situation and one where there is a great deal of uncertainty.  It is perhaps surprising that most people will feel out of control.  In this article we want to provide the challenges of the lock down and provide ideas that might help with managing the situation.

Topics and suggestions are:

  • Feeling out of control
  • Education and knowledge
  • Communication
  • Taking care of yourself
  • Maintaining relationships during Covid 19
  • Routine and structure
  • Final Tips

To read the full article please follow this link

"Ask the Expert" - a new way to ask your questions or express concerns:

In response to the government health recommendations regarding COVID-19, we have cancelled our monthly support group meetings until further notice.  We want to "keep the conversation going" and would like to hear any questions or concerns you have regarding epilepsy.  These can be questions about yourself, a loved one, friend, family member, neighbor, etc.  We will gather questions and respond to them in upcoming newsletters.  All questions posted will remain anonymous and we will "ask the expert" to respond to your question or concern.  Listed below are a couple of questions we received this month. 

How and why do attacks (seizures) happen?

Epilepsy is a neurological disorder of the brain’s electrical system

Epileptic seizures happen where there are abnormal electrical charges of disruptions in the brain.

They can be described as an electrical storm in the brain.

Causes can be injuries to the head-brain trauma, development of the brain before birth or lack or oxygen during birth, lead poisoning, brain tumors or strokes, infections such as measles, meningitis or encephalitis, genetic origins or drug/alcohol abuse withdrawal.  In about 70% of people with epilepsy, no cause can be found.

Triggers for seizures might include:

  • Not taking medicine as prescribed (#1 reason)
  • Lack of sleep
  • Alcohol/drug consumption or withdrawal
  • Stress
  • Hormonal changes 
  • Hyperventilation
  • Dehydration
  • Depression

To send in a question or concern please email Barbara Coleman at: bcoleman@esswfl.org

Are there are any warning signs before a seizure?

Some warning signs of possible seizures may include:

  • Odd feelings, often indescribable
  • Unusual smells, tastes, or feelings
  • Unusual experiences – "out-of-body" sensations; feeling detached; body looks or feels different; situations or people look unexpectedly familiar or strange
  • "Aura" or "deja vu" feeling
  • Feeling spacey, fuzzy, or confused
  • Periods of forgetfulness or memory lapses 
  • Daydreaming episodes
  • Jerking movements of an arm, leg, or body
  • Falling
  • Tingling, numbness, or feelings of electricity in part of the body
  • Headaches
  • Unexplained confusion, sleepiness, weakness
  • Losing control of urine or stool unexpectedly

Case Managers' Corner

From Bobbi Frasca, Case Manager,  Fort Myers and Naples offices:

Through this pandemic and time of staying home, client case management at Epilepsy Services of SW Florida has not slowed down.  As one of the case managers here, I have been able to work with our staff and doctors to implement virtual clinics  using 3-way phone calls.  While wearing personal protection I have been able to go to the doctor’s office to  prepare the client medical charts prior to the clinics.  Also I have been able to continue ordering medications either by phone or through patient assistance programs and if the medications are delivered to the doctor's offices, (again using personal protection) go to the office, pick up the meds and ensure they get to our clients..  It is critically important for our clients to get their medications.  Through the use of today’s information technology we have maintained a high level of communication between case managers and the rest of the staff and we have been able to continue to provide all of our clients with the same level of service as before the pandemic.  We look forward to seeing all of you again as soon as we can.

From Diane Walz, Case Manager,  Bradenton and Sarasota Offices:

When people ask me where I work, I tell them I am a case manager at Epilepsy Services of Southwest Florida.   “What do you do?” they often ask.  I find myself giving a short answer, such as “I help people with epilepsy access a neurologist, obtain testing, and receive medication”.   But the truth is, I do so much more than that.  I do tons of paperwork!  Ok, just kidding, a little…I really do tons of paperwork.  But my job is so much more than the technical, clinical aspects of case management.  I am often someone who just listens.  I listen to the stories from people who have had epilepsy since childhood.  I listen to the those who suddenly start having seizures as adults, some because of head trauma from assaults, car accidents, or other injuries and others for reasons unknown.   I listen as they struggle to understand that what they have typically can’t be cured.  I listen as they tell me how hard it is to find work.  I listen as they tell me their relationships have suffered due to having seizures.

As a case manager at Epilepsy Services of Southwest Florida I do help my clients access a neurologist, obtain testing, and receive medication and then I also get to listen to stories of success.  I listen to them express appreciation for the support and guidance provided by Epilepsy Services of Southwest Florida because they can now drive a car, or have found a job, or are continuing their education.   I listen to stories of relationships, of falling in love, of getting married.

So, yeah, I do a lot of paperwork and I coordinate delivery of services, but the best part of my job is that I get to learn from and be inspired by an incredible group of people who often face an unknown and scary path that I may never fully understand. 

From Gwendolyn Howerton, Case Manager, Fort Myers and Naples offices:

I have a single female client on my caseload who enrolled in our program in May 2017. She was also receiving mental health treatment at that time and currently still is. She was having numerous seizures a day day almost every week and could not be left alone with her two young daughters. She was living with her grandmother (who was barely making it as well) who was the caregiver to all three, because of the seizures. Her daughters were always afraid for their mother. The grandmother would always call me about the seizures as the mother could not remember what happened to her. Her epilepsy medications were continuously changed upon every appointment because several other medications made the seizures worse. Her self esteem was very low as she would never look up while talking to me or the doctor, and she seemed depressed. In August 2019 she reported she had been 6 months seizure free. I was not at this appointment as I was on vacation but I was surprised. A few weeks later she called me and told me she needed information on how to get her drivers license and I was happy to assist. The next time I saw her at a medical appointment in February 2020 her whole demeanor had changed for the better, she looked at me and the doctor while talking and looked better than ever. She reported having no seizures since the last medical appointment; that's a whole year. She reported she had a job with the county school system as a school bus monitor. She looked totally different and at ease. Her last medication prescribed was Aptiom, which is one of the newer drugs that the doctors have been prescribing lately to those who have hard to control seizures. So I credit this change for the successful outcome of our client. 

Exciting News!  New Resource Libraries Coming to Sarasota and Fort Myers Offices

Please read Cassidy's Story: 

My name is Cassidy Marino and I am a rising senior at Bishop Verot High School in Fort Myers. As a part of my academic curriculum, I was challenged to find a need in my community and construct a project around fulfilling it. After searching for a little while I found Epilepsy Services of Southwest Florida; and I saw they needed a lending library for their clients. Since December of 2018 I have dedicated myself and my time into providing the best medical library for epilepsy that I could. I am proud to announce the project is almost complete.

Every one of us has been impacted by epilepsy in some way. For me, its my youngest brother Shane. Among other things, Shane has frequent seizures. Even though I’m only 16, I have learned a great deal about living with Epilepsy. I know the difficulty of switching medications and dosages, the disappointment of a seizure after a few normal days, the constant preparation for the worst. Most importantly, I know how much our lives improve with incredible doctors and advisors. The medical support team becomes such a valuable and helpful part of our lives. They make life manageable when it seems like seizures will control everything. I knew I had to do my best to provide for the service that provides for so many people.

I spent the first year or so networking, organizing, and attending the Epilepsy walks. I was able to raise a total of $2,236. Then, starting in April of this year, I began to research and purchase. Soon I discovered I was able to finance two libraries, one in the Fort Myers office and another in Sarasota. Each library consists of about twenty books on the varied facets of epilepsy. Some books are for children, others are for family members, some deal with epilepsy specifically in women, and others still address personal stories of recovery.

As soon as Epilepsy Services reopens their offices, these books will be made available for everyone to borrow. It is my hope that these libraries serve as a valuable resource for everyone who visits the Sarasota and Fort Myers offices. One of the most important parts of living life with Epilepsy is understanding, and I want these libraries to provide assistance in the pursuit of a healthy, happy life.

DONATE TODAY! 

We need your help!  Donations are always welcome and without them we would not be able to do the work that we do.  Your gift helps ensure our clients continue to receive critical medical attention including access to neurologists, diagnostic testing and assistance accessing medications as well as case management services and prevention and educational programs to the community at large.

Here are current donation opportunities:


Louis and Gloria Flanzer Philanthropic Trust Matching Program:

The 2020 Flanzer $500,000 Matching Program will match any gift from $5 to $500 to Epilepsy Services of Southwest Florida.  “Louis and Gloria Flanzer always believed in the goodness and generosity of people,” said Eric Kaplan, co-trustee of the Flanzer Trust.  Please support Epilepsy Services by donating today.

Link to donate: FlanzerTrust.org

  • Click on the PayPal button and you will be directed to a page where you can pay either by PayPal or with a Credit/Debit card. 
  • Type in the amount of your gift from $5 to $500. 
  • Type in Epilepsy Services of Southwest Florida where it says “write a note” or “write a note (optional)”.  Typing Epilepsy Services in this note section will ensure your gift is directed to us.    
  • Pay with PayPal or a credit card
     

Prevention & Education Services

If you would like the Community Outreach Coordinator to come to your business, your club meeting or your office, please contact Barbara Coleman, Community Outreach Coordinator at bcoleman@esswfl.org or 941-953-5988, Ext. 316 for a free presentation. Barbara will be glad to train your staff on how to respond to someone having a seizure or just make an informative presentation about epilepsy – the fourth most common neurological disorder in the United States after migraine, stroke, and Alzheimer's disease.

About Us

The goal of Epilepsy Services of Southwest Florida is to assist in the process of empowering our patients toward self-management in order to lead as close to a normal life as possible.

Take time to view our video: