October/November 2020
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“Believe you can and you're halfway there" - Theodore Roosevelt Epilepsy Services of Southwest Florida Bi-Monthly Newsletter- Fourth Edition - October/November 2020 |
Greetings to everyone!
We hope this fourth 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 regard 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.
IMPORTANT!
Our office hours continue to be limited due to the COVID-19 Virus, but we are working remotely and are available via phone or email.
All client clinic visits with their physician will be held via Telemedicine until further notice.
These visits will be scheduled by your Case Manager and they will contact you regarding your appointment.
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 office, Alex Batalla: (941) 953-5988, ext. 312, email abattala@esswfl.org
Sarasota & Bradenton office, Diane Walz: (941) 752-6226; email dwalz@esswfl.org
Other inquiries: Executive Director, Kevin Lindberg: (941) 953-5988, ext. 303, email klindberg@esswfl.org
Prevention & Education information, Community Outreach Coordinator, Barbara Coleman: (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.
DATES TO REMEMBER IN OCTOBER AND NOVEMBER
* October 23 is SUDEP Action Day!
SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found. Each year, more than 1 in 1,000 people with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures.
SUDEP Action Day is devoted to raising awareness about SUDEP in epilepsy, encouraging people with epilepsy to learn about SUDEP and their risk, and honoring the lives of those we have lost.
Please join Epilepsy Services of Southwest Florida to bring awareness about SUDEP.
* November 2020 is National Epilepsy Awareness Month!
National Epilepsy Awareness Month in November is an annual event that teaches people about epilepsy’s causes and symptoms. One in 26 people will be diagnosed with epilepsy at some point during their lifetime. Epilepsy is one of the least understood of all the neurological diseases, yet it is the fourth most common. During this month, many organizations join together to provide information about prevention, treatment, research, and resources to fight epilepsy.
* More Information will be sent out via separate email blasts regarding these
important events.
What factors may increase the risk from COVID-19 for a person with epilepsy?
Some people with epilepsy regardless of seizure control have other health conditions that put them at higher risk from COVID-19.
- They may be taking medicines to control seizures that also affect their immune system (for example, ACTH, steroids, everolimus, immunotherapies). It is important to note that most seizure medicines do not affect the immune system.
- Some people may have other neurological or developmental issues that affect their immunity. People in these situations are at greater risk of developing more severe symptoms with viral illnesses.
- People with epilepsy may have other medical problems that could place them at higher risk of developing more severe symptoms with COVID-19.
For example, people who have problems swallowing or frequently inhale food or liquids into their lungs (aspiration) are at higher risk for pneumonia.- People with diabetes or underlying heart or lung problems also appear to be at higher risk for severe COVID-19.
- Regardless of your situation, it is important for anyone with epilepsy to talk to their treating health care provider about their individual risks and if any specific medical precautions are needed. Take precautions to avoid getting sick too.For more information about COVID-19 and epilepsy, go to: https://www.epilepsy.com/learn/covid-19-and-epilepsy
"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 is a question we received this month.
"Why do I sleep so much? I have no energy. I feel like a zombie when I take the medicine?"
It may be difficult to clearly indicate why you might be experiencing these symptoms, but there is general information on how they might occur:
Lack of sleep:
Sometimes medications affect your ability to get a good night's sleep, resulting in drowsiness and wanting to sleep more during the day. This can also affect your ability to think clearly and perform normal tasks during the day.
Seizure medication:
Some seizure medicines may affect thinking, memory, attention or other mental or cognitive functions.
Sometimes the way that seizure medicines stop seizures also can affect how the brain works in other ways. Since seizure medicines lower the excitability of nerve cells in the brain, they can also affect normal activity. Cognitive problems - problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms – can be due to side effects of some seizure medicines. Some medicines may also affect a person’s energy level, mood, motivation or how fast they think or do tasks. Sometimes these problems will go away as you get used to a medicine. Other times they don’t.
It is important to remember to consult your physician if these symptoms persist.
To read more, please click on the following link to the Epilepsy Foundation’s website: https://www.epilepsy.com/article/2014/3/sleep-and-epilepsy-yourdoctorcom or https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects
To submit a question, please email: bcoleman@esswfl.org.
Case Managers' Corner
New Epilepsy Services Client Handbook!
Epilepsy Services of Southwest Florida has developed a new client handbook, available in both English and Spanish.
This new handbook outlines the programs and services that are available to our clients and answers many questions clients (particularly new clients) might have.
Here is an excerpt from the Introduction:
This handbook has been designed for you and outlines the basic services offered through Florida’s Epilepsy Services Program (ESP) that is partially funded by the Florida Department of Health. Epilepsy Services of Southwest Florida (ESSWFL) welcomes you and provides this handbook to notify you of your rights and responsibilities as they relate to these services.
Additionally:
Who We Serve
The services of Epilepsy Services of Southwest Florida (ESSWFL) are available to:
• Permanent Florida residents who have a diagnosis of epilepsy or are suspected of having epilepsy and reside in the following counties: Charlotte, Collier, Desoto, Glades,Hendry, Lee, Manatee, and Sarasota.
• Families and loved ones of persons with epilepsy/seizure disorders.
• Community organizations, schools, professionals, and businesses in need of information regarding epilepsy.
This handbook is designed to address your needs and concerns. The handbook applies primarily to those of you who are seeking epilepsy education, case management, medical services, family services, and/or advocacy.
If you would like a copy of this new handbook, please contact your case manager or closest office location.
Each issue of this newsletter we will feature members of our staff or volunteer board of directors with the intention that you will be able to get to know a little bit better the faces behind the names.
We’ll start this issue with ESSWFL executive director Kevin Lindberg.
Mr. Lindberg began his eighth year in the leadership role with Epilepsy Services of Southwest Florida in July of 2020. He has more than 35 years of not-for-profit management and leadership experience with several Florida organizations including executive director roles with the Southwest Florida Chapter of the American Red Cross and The Wellness Community of Southwest Florida. In addition to his experience with a wide variety of organizational strategic planning, he has led renovation and capital campaigns and managed diverse revenue sources including individual gifts, public and private grants, planned giving and special events. He has responsibility for developing annual operational plans to support the agency’s strategic direction as well for overseeing compliance with legal and regulatory requirements including the annual funding allocations from the Florida Department of Health and The United Way.
“It is really a privilege to witness up close what an organization like ours can do for people who really don’t have anywhere else to turn,” he said recently about his role as executive director. “It’s motivating to see so many people in the organization from the staff, the board, the volunteer neurologists, the overall medical community and our donors and supporters come together to get lives back on track.”
DID YOU KNOW? NEW Tax Rules for 2020!
Here is a new tax law passed this year to consider how you can start planning for your 2020 tax obligation:
Make up to $300 of charitable contributions. For the 2020 tax year only, an above-the-line deduction of $300 is available to all Americans who want to make a charitable contribution. You can donate to more than one charity, but the total amount of contributions must be $300 or less to be able to take an above-the-line deduction. While you will still need to itemize your deductions if you want a tax break for donations greater than $300, this above-the-line deduction for $300 or less helps alleviate the elimination of the charitable deduction for most taxpayers. (NOTE: $300 is the maximum above-the-line deduction per tax return, regardless of filing status.)
What you need to do: Donate $300 to your favorite charitable organization(s) by December 31, 2020. You must receive a written acknowledgement from the charitable organization (s) to which you made the $300 contribution before filing your 2020 tax return.
Please see below- Flanzer Philanthropic Trust allows you to double your donation!
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:
- 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.
Go to our website to learn more about our organization and take time to view our video: epilepsy-services.org
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