November/December 2021

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"You define your own life. Don’t let other people write your script. "
                - Oprah Winfrey

Epilepsy Services of 
Southwest Florida

Bi-Monthly Newsletter
Eleventh Edition - November/December 2021

 

Greeting to our clients, physicians, donors, sponsors, supporters, and community members! 

We are still faced with many of the challenges we experienced in 2020.  The COVID-19 virus and other variants are still evident, and we hope that you, your family and friends will be vaccinated soon.    

We are looking forward to where we can all eventually come together again and continue on a path to a healthy, safe and prosperous life.

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. 

IMPORTANT!  Our staff will be in our offices on a limited basis to take deliveries and phone calls, but will continue to work remotely and can be reached vie email or phone.

All client clinic visits with their physician will be coordinated from our offices.

These visits will be scheduled by your Case Manager and they will contact you regarding your appointment.

 

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

Fort Myers Office (also serves Naples), Dee Cilento: (239) 275-4838 ext.1, email dcilento@esswfl.org
or Gwendolyn Howerton;
(239) 275-4838 ext.2, email ghowerton@esswfl.org

Sarasota office, Name to be announced soon:  
(941) 953-5988, ext. 312

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. 

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


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"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 group support meetings. 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.

"My wife has been diagnosed with Psychogenic Nonepileptic Seizures.  What are they?"

The following is information that may help you understand these type of seizures:

  • PNES (Psychogenic Nonepileptic Seizures) are attacks that may look like epileptic seizures but are not epileptic and instead are cause by psychological factors.
  • Sometimes a specific traumatic event can be identified.
  • PNES are sometimes referred to as psychogenic events, psychological events, or nonepileptic seizures (NES).
  • The only reliable test to positively make the diagnosis of PNES is video EEG monitoring.
  • Treatment with cognitive behavior therapy and serotonin re-uptake inhibitors has been shown to be effective.
  • More research is needed to find additional ways to treat PNES.

A leading pioneer in the study of PNES, Selim R. Benbadis, MD, is director of the Comprehensive Epilepsy Program and professor of the Departments of Neurology and Neurosurgery, University of South Florida and Tampa General Hospital. He has openly encouraged both the psychiatric and neurological community to broaden their clinical knowledge base when diagnosing and treating people with PNES.

To learn more about this condition, please click on the following link below 

https://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures

To learn more or submit a question for our next newsletter, please email: bcoleman@esswfl.org.


SAVE THE DATE!  NOVEMBER IS EPILEPSY AWARENESS MONTH!

Living with epilepsy can have its challenges. Epilepsy can affect a person’s emotional health in many ways. Emotional health is important for people with epilepsy, family members, caregivers and friends. With the power of our community, we can bring hope to those experiencing the challenges of epilepsy.

Facts about epilepsy:

1 in 10 people will have a seizure and 1 in 26 will develop epilepsy during their lifetime. 65 million people globally have epilepsy.  3.4 million people in the United States have epilepsy.  225,000 people in Florida have epilepsy. 

We need more people to learn seizure first aid to help save a life.

EMAIL BLASTS WILL BE SENT OUT DURING THE MONTH OF NOVEMBER TO BRING AWARENESS ABOUT EPILEPSY TO OUR CLIENTS AND SUPPORTERS. 

Epilepsy receives 10 times less funding than other brain disorders.

PLEASE CONSIDER DONATING TO HELP US CONTINUE THE IMPORTANT WORK WE DO IN THE 8 SOUTHWEST FLORIDA COUNTIES THAT WE SERVE. 

CLICK ON THE BUTTON BELOW WHERE YOU WILL BE DIRECTED TO THE FLANZER MATCHING GIFT PROGRAM - YOUR DONATION WILL BE DOUBLED!   PLEASE DESIGNATE EPILEPSY SERVICES OF SWFL AS THE RECIPIENT.  THANK YOU FOR YOUR SUPPORT!  

Over 30 Organizations Seek Guidance from CDC on COVID-19 Vaccine Boosters and Additional Doses

This week, the Epilepsy Foundation along with 30 other disability rights organizations, sent a letter to the Centers for Disease Control and Prevention (CDC), seeking guidance on vaccine boosters and additional doses for people with disabilities and chronic conditions. A recent report published earlier this month from the CDC found that compared with adults without a disability, those with a disability had a lower likelihood of having received a COVID-19 vaccine, despite being less likely to report hesitancy about getting vaccinated. The letter emphasizes how recent guidance on boosters and additional doses has been confusing for the disability community, which still faces barriers to receiving an initial dose of a COVID-19 vaccine.

The coalition of groups request more detailed, accessible guidance and outreach from the CDC to people with compromised immune systems on the need for an additional dose of the Pfizer or Moderna vaccine; more detailed guidance and education on the high risk conditions for which people are recommended to get a booster dose of Pfizer; and further publicizing and encouraging states to adopt a broad definition of long-term care settings to be included in the recommendation for residents and workers to get a booster dose. Learn more about COVID-19 boosters and additional doses.

In 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.

This issue we are featuring Jim Fisher, ESSWFL Board Member

- If life were fair, Elvis would still be alive today and all the impersonators would be dead.~Johnny Carson

Life is difficult.  Furthermore, life isn’t fair.

Don’t get me wrong, I’m not whining about life’s inequities.
God gets my attention, and teaches me lessons through failures, challenges,
tragedies, and abject pain.
Without exception, they’re the greatest catalysts for personal development and spiritual growth.

It can happen to anybody:
I was in exactly the wrong place at exactly the wrong time.
When I woke up in the hospital, I was not the same person.
It took a long time to accept that life as I knew it was over forever.

Part of my package deal was epilepsy.
I didn’t ask for it or sign up for it, but there it was just the same.

As an indestructible 16 year-old high school student with all sorts of lofty ambitions,
I suddenly found myself saddled with a very real, very cruel, very dominant disorder.
...It was a bitter pill to swallow.

I’d never given epilepsy a second thought...why should I?
It was one of those nebulous conditions that afflicted other people.

When you have it, you have it for life, and that’s your reality.
The best you can hope for is a daily reprieve through medication, and if your meds aren’t readily accessible, you’ve got a huge problem on your hands.
Unfortunately, epilepsy meds can be very pricey.

I was one of those unfortunates who fell through the cracks in the system.
I suffered through a daily barrage of seizures for years because I couldn’t get meds, and  even worse, I just didn’t know any better. 
It was a hellish way to exist, and I wouldn’t wish it on anyone.

Finally, I experienced another major change when I discovered Epilepsy Services of Southwest Florida.

ESSWFL is about so much more than providing badly needed meds.
They’re about dignity, encouragement, and helping you feel a little less alone.

You’re not just a client, you’re one of their very own.
There’s no doubt in my mind: Had I known about ESSWFL from the very start, my life would be very different.

Everything happens for a reason, and whatever that reason may be is none of my business.
God doesn’t owe me an explanation.
But he did give me the opportunity to be involved with ESSWFL.

Life may not be fair, but Epilepsy Services of Southwest Florida has renewed my faith, and leveled the playing field.

*   *   *   *

A while back, Kevin Lindberg asked me to join  ESSWFL’s Board of Directors.
My knee jerk reaction was, “Of course.  I’d be delighted to give back in any way I can.”

Then I started to think about it (usually not a good idea). Fear, doubt and insecurity started creeping in.
I’ve never served on the Board of Directors of anything.  What qualified a pretender like me for such a heady position?

I never thought that existing under a nauseous cloud of seizures would authorize me for anything.

I was vividly reminded of the Mark Twain quote:
“It's better to keep your mouth shut and appear stupid than open it and remove all doubt.”

Rather than look like a knucklehead to anyone who may be paying attention, I promptly called Kevin back and demurred.   He’d have none of it.

Like any good administrator, Kevin has a talent for making people do things they’d rather not.
He appealed to my sense of duty, reaffirmed his faith in my abilities, massaged my ego, thanked me and hung up.
I felt like the fearful ingénue being pushed on stage.

Evidently, there was no putting that genie back into the bottle.  Me and my big mouth.

Human beings possess the uncanny ability of living up to, or down to your expectations.
Kevin said I could do it...so here I am.

Looks like we’re stuck with each other.

ESSWFL Community Outreach Coordinator is Out and About!

Barbara Coleman, our Community Outreach Coordinator has been getting back out into the community to do in-person presentations (following COVID safety measures, etc.)  She recently did a presentation to Patient Care Assistant and Practical Nursing students at Manatee Technical College, East Campus.  Thirty-four students attended the presentation and Beth Meyer, MAEd, BSN, RN, oversaw the group and assisted with preparations, etc. 


Alternate textDONATE 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:

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Louis and Gloria Flanzer Philanthropic Trust Matching Program:

The 2021 Flanzer Matching Gift Program will match any gift from $5 to $500 to Epilepsy Service 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. 

How to donate:

  • Click on the donate button and you will be directed to a page where you can pay either by PayPal or Credit card.
  • Type in the amount of your gift from $5 to $500. 
  • Designate Epilepsy Services of SWFL in the drop down menu at the bottom of the page to ensure your gift is directed to us.  
  • If you would like to make a donation by check, please make the check out to: The Louis & Gloria Flanzer Philanthropic Trust, 1843 Floyd Street, Sarasota, FL 34239 and indicate Epilepsy Services of Southwest Florida in the memo section.

Thank You! 

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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.  Presentations can be done via Zoom to promote social-distancing. 
 
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.

Shop at Amazon Smile and support Epilepsy Services of Southwest Florida.

You can shop at Amazon Smile and the Amazon Smile Foundation will donate 0.5% of the purchase price of eligible products to our organization. Just select Epilepsy Services of Southwest Florida as your charitable organization.  You can use your Amazon account or set up an account at Amazon Smile.

We sincerely thank you for your consideration and support! 

For more info go to: https://smile.amazon.com/gp/chpf/homepage?orig=Lw==

Go to our website to learn more about our organization and take time to view our video:  epilepsy-services.org

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