VOLUNTEER
Epilepsy Services of Southwest Florida, Inc., was established in 1968 as a 501 (c) (3) non-profit organization. Our service area includes an 8-county area of the west coast of Florida including: Charlotte, Collier, DeSoto, Glades, Hendry, Lee, Manatee and Sarasota counties.
Services are provided in the main office in Sarasota as well as through field offices in Bradenton, Ft Myers and Naples.
We provide the following services:
- Medical and diagnostic testing services to uninsured adults with epilepsy (18 yr & over)
- Case management services for patients in the Medical Clinic program
- Prevention and education programs to individuals, families and the general community
- Information about epilepsy and referrrals to other related community services
Click here to sign up to become a volunteer.
WHY GET INVOLVED WITH EPILEPSY SERVICES?
Written by Jane Kelly, Fort Myers
5/11/2015
I was asked to talk about why I want to get involved with Epilepsy Services. Why do any of us get involved with a charity organization? We usually have some connection to it. Everyone here probably has a family member with epilepsy, has a friend with epilepsy, has a colleague with epilepsy or has epilepsy themselves.
For me, it's the latter. Today I am 1 year, five months, 2 days seizure free. My first grand mal seizure blind-sided me. We had no idea that I had a brain tumor. My whole life changed on January 26, 2008. It was around 6 p.m. In fact, the lives of everyone in my family changed that evening. I will never have the same type of the life I had before the seizure.
I miss the feeling of freedom with no medication, no doctors, no medical alert bracelet, no reporting to the DMV each year to keep my license. Many of you probably know how I feel. Some parts of my life are better. Some I would not wish on an enemy. Life is scary now. I never know if or when I will have another seizure. My days feel fairly normal now but having a seizure is always in the back of my mind.
After the brain surgery, I was told that I wouldn't have any more seizures. That unfortunately has not been the case. With each seizure, I would wake up in the hospital, light glaring in my eyes, lots of needles, nurses, and the voices of my family. My first thoughts would be:
- I would think...I have a great support group with my family and friends.
- I would think...I am so lucky I have insurance. Hospital visits and ambulances and medication are unbelievably expensive. One time my pharmacist asked me if I knew how much one vial of my meds would cost me for one month without insurance. No, I said. Over $900. Now, I am on more meds since I've had more seizures. Once again I say, I am so fortunate to have insurance.
- I would think...I have lost my license again for at least one year maybe two years. However, I am so lucky that I have my support group who drives me to work, the grocery, doctor appointments, etc. What would I do if I didn't have them? I am so lucky to have friends & family to drive me anywhere I need to go.
- I would think...I am lucky to have a neurologist & a GP who take such good care of me. They supervise my medication, evaluate me and test my blood levels on a regular basis.
- I would think...Embarrassment. Where did I have my seizure? Who was with me? How bad was it? How long did it last? Will this affect my job? Will people see me differently? Seizures can leave me frightened, confused, sad, paranoid, embarrassed, and even paralyzed on one side for a short while. Seizures don't happen at the most convenient of times. One of my seizures was at Target. At Target, I was by myself with no identification. I was taken to the hospital with no name and I didn't know who I was and didn't know my phone number. But my husband and I use the "buddy system." An EMT answered my cell phone when my husband called to check on me.
It is safe to say that many people have epilepsy, but do not reveal it in public because of the ongoing stigma associated with the condition. Epilepsy can strike anybody at any station of life or level of accomplishment. Epilepsy can be deadly and devastating to a person's life even if they are successful in other aspects of their life.
Because of my personal experience with epilepsy, I chose to speak here this morning precisely for what the name of the event says. "Create Awareness."
I hope to inform the community about epilepsy for 3 reasons:
- To help remove some of the stigma associated with it and the seizures that accompany it.
- To help those with epilepsy find this organization so they can take advantage of all the services it provides.
- To help raise funds to support Epilepsy Services so they can continue to provide help to those who cannot afford their medication or don’t have transportation to their doctor’s appointments.
Now you know why I want to be involved with Epilepsy Services. I ask you to think of those in our community who need a little of your time now and again. You can give someone with epilepsy a ride to the grocery store or to work from time to time or call Epilepsy Services to see if there are any volunteer opportunities for you.
Whenever I am in a public place now, I always think about my seizure at Target. The last thing I remember is a gentleman asking me, "Are you ok? You don't look well. Can I help you?" When I started having my grand mal seizure, I wonder what he thought. I wonder if he was ready for what he saw. I wonder how he handled it. I wonder if he stayed by my side? Did he know what to do? Was he the one who called 911? Now I pause when I'm at Target and I think, one of these customers or employees saved my life that day. And they might do it again. Or, as I look around, I think, I might have the opportunity to help someone here if they need me. Do you know what to do if someone has a seizure? You never know how you can impact someone's life. That is why I am involved in Epilepsy Services. You just never know when it might be you, someone you love or someone who just needs you.
Click here to sign up to become a volunteer.
This website is sponsored by The Plantation Community Foundation of Venice Florida.