HOPE AT THE END OF THE TUNNEL

     Onfi, Fycompa, Aptiom, Dilantin and Prozac

    For those of you out there looking for a happy ending to all of their sad stories as I was, there is Hope! Epilepsy is not a sad ending to a terrible life if that’s what you have or had in mind. Lord knows I did. For 26 years I have been messed up on meds, many different neurologists and every medication that there is still on the market. I was even a guinea pig many times for two medications including, which I am still on - Onfi and Fycompa at NYU Epilepsy Center for a week or two each over these past two years.

    I had thought for sure that this damn problem of mine was a lost cause and that I was to end up the rest of my life on mine and my parents couch, seat, chair, whatever I could sit on safely on and not injuring anybody because of my falling issues, as well as without a job either for the rest of my life. Not that it is any different yet today, still living day by day.  

   Here in New York and elsewhere you need to be totally seizure free for a year to drive, not that I blame them, nor do I wish to ever again anyway with all of the crazy drivers on the road, but, a full-time job I would appreciate deeply. Being seizure free to work again has to be approved by your doctor. New York, being Epileptic, is one of the harshest states in America and the world even. Not that I can blame them either for it because states like Texas allow you to drive again just after three months. Sooner if your doctor approves it. So all you cowboys get to jump back into your Ford F150 Super Duty’s much quicker if your brain allows it to. Most states allow the same, some do not even have monthly standards, Just a doctors approval.

    But, finally though, after all of these years there is ‘A light at the End of the Tunnel’ like they say. All hope is not lost as I thought for so long. Every year on New Year’s Eve I’ve wished for the same New Year’s Resolution. Not for a bicycle, car or toy but, ‘that one day this would all stop and go away’. Not totally but, that someone, someday would find the right dose, combination to settle my brain waves from acting up like crazy. Much more than a person without any problems.

This year though, I seemed to have finally got my wish!

    Am I an Epileptic for life, most certainty. Will I have seizures like I did in the past when I was growing up and able to work with, yes. There is no cure for one of the oldest problems that man-kind has ever had. But, finding the right dose of medications, something that I thought I would never find, can be. Many say that I am jumping too far ahead or that it is just a honeymoon affect or period. The honeymoons over! How far ahead do I have to look forward to since December 15th when all hell broke loose, almost killing me. Two months later although, I am still feeling fine, more than 95% better than before that crazy day!

    Not difficult to say but I never want to see myself in another ambulance, ever again or in another hospital bed as well! Call me crazy but, whofor that matter would like too.

No one.

    I used to call every bathroom, restroom or shower anywhere at any place a Death Trap! My parent’s house mostly was a different fall like no other place on Earth. As soon as I stepped in I fell. If I sat I fell, and if not, washing my hands surely dropped me down to the ground. And thank God as well that this has all almost stopped too. Unbelievable but true although, I keep myself safe as in wearing a helmet still if I am in my house or home.

   As well as I feel, this will not stop me from my semi-daily work of keeping up with my blogs, keeping up with my stories which are all sadly true as well as keeping my followers interested. Once again I am not healed or cured, nor will I ever be but, with the right medications, there just might be hope for you too!

    So There is Hope at the End of the Tunnel. May take some time, lots and lots of time unfortunately, but, possibly by tests, or not, you may find the right doctors with the right medications or answers to your problems is possible!       

WHO TO GIVE THANKS TO ON THANKSGIVING!

Who to give thanks to is not a difficult question depending on the size of family that you have. I have a rather large Italian family so to choose who we should start with would be your closest - parents or grandparents, then siblings, sons and daughters, Godparents and your aunts, uncles and cousins.  All of the elders will be the first in line to give your thanks to - second in line, your cousins and - third your in-laws, sometimes they be first in line depending on the respect that is given to you too by them all year. Your wife or husbands cousin in-laws as well. Friends are big parts of people’s lives as well, sometimes we are closer to our friends than our family which we call Bros and Cuz’s (Cousins). Most of us have them, grew-up with them and love them like brothers and sisters!   

While today’s Thanksgiving celebrations would likely be unrecognizable to attendees of the original 1621 harvest meal, it continues to be a day for Americans to come together around the table.

     The main thing that I have to be thankful for though is to be alive.

Living from one day to the next is the hardest part of our lives, with all that is happening in the world today - war is a never ending battle because there will always be others unhappy with their lives and anyone who is happy. But what can we do, bow down and let whoever win the fight? or stay strong, rise and battle every battle that comes our way? My own family is alive and well and mostly don’t have to fight the wars that an Epileptic has to - thank God because it’s a never ending battle! I fight through all my battles and wait to see what tomorrow has in store for me and so should you!

There are many other things as well to be thankful for while we are alive and well. Do as much as you can with the time that you have with each other, whether it be playing sports, watching movies, listening to music of all sorts - like Vinyl records which has become my favorite - collecting/reading books, writing and/or raising pets like my Sammy who licks me everyday to check-up on me and make sure that I am still alive and wake up from short naps. Sammy is a dog, what else can he do to show affection?  These are just some hobbies that I have as well as taking RC monster trucks to a rather large park or track for fun and enjoyment with my wife, Michelle.

There is so much more in anyone’s life from family and friends to pets and hobbies to be thankful for. A few things that I would like to have in my life which is beginning to look promising is a DNA blood test covered now by Medicare, and possibly other insurances as well with no hospital stay necessary. Just a simple blood test which used to cost $5,000 and will hopefully be done in 3 months once it is approved. I will keep you informed of the results and what they find. I am hopeful it will lead to great things and possibly the right medication.

Be thankful this Thanksgiving. Never give up and be thankful for everyday that you have with loved ones!  

EPILEPSY AWARENESS MONTH

Focusing on care, advocacy, research and education

to prevent epilepsy, seizures, bullying, ignorance, 

injury, barriers, burdens, and early death!

One million Americans like myself are still praying for a cure that may never be found. Hope as well as strength is our best chance of surviving from this epidemic. This is a fact for all epileptics to keep up the good fight and to knock out all of the badness trying to hurt us, and hurting us is working to a degree, but, I am still here as many of you are and I plan on it for a long time, God willing. I fall, but I get right back up and back to work. I’ve been injured so many times in so many different ways, but death has not taken me away yet nor do I want it too till we find a cure!

We have good weeks, we have bad ones. I myself am still waiting for that good month to occur as well as back to back weeks, therefore two good weeks over my 26 years have yet to come.

This walk for Epilepsy I would love to do, but, I am here in New York and that walk is in Pasadena, California on Sunday, November 22nd during the Rose Bowl which I could care less about other then these here epileptics of course. A Walk + Run to End Epilepsy, if it only was that simple yet a $500,000.00 fundraising goal can be made. I only wish that there were more individuals like myself, which there are, to share their stories too and possibly more people will care to help because you will never here a thing on the radio or television about it.

As much as this month they say is for Epileptics you will never see an athlete wear a purple ribbon promoting it like they do for breast cancer patients on their sneaker, sock, wrist, chest or collar and there are and have been forever way before cancer started epileptic victims have been dying and it bothers me so. I know that everyone has a mother or family member with cancer and for that I am sorry but, every family has a member as well or few with Epilepsy or Seizures and if not well then you have a very lucky family. 

Advocating for Change that Improves Lives!

  The Challenge:

• No voice for people with epilepsy

• Need statewide advocacy

• Support passage of bill so students with epilepsy can have access to seizure rescue medications in school, and we continue to support implementation with educational material

• Host Epilepsy Awareness Day and educate legislators about epilepsy

• Send delegation to D.C. for Epilepsy Public Policy Institute / Advocate for more funding for epilepsy research and programs

• Ongoing legislative advocacy to protect rights and live
  
  FINALLY -  we need to spread the word to Fight Against Epilepsy and...
  
  FIND A CURE!