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!       

WHAT IT MEANS TO BE HOUSE-STRICKEN & STRONG

Make the best of what you have in your life because nobody knows what tomorrow will bring and it is usually worse than better. Being house-stricken and on a couch or being watched by everyone 24/7 is no way to live your life. As it is being wasted away hiding behind the bars you’ve made which others don’t see - causes rage. Somedays more uncontrollable then the ones before with hopes and dreams that someday this hell will end and yet it just continues and continues on and on and we are supposed to just smile and say that everything is okay, when you know that this life is terrible and the only thing is Nothing!

Because this is what they expect of you, to sit back and do not move. Makes them happy although you can or maybe not, but it is just all the same as long as they are happy and you are suffering, it doesn’t matter. Some of them care too much and you become a burden to them and of course they won’t ever admit it, but you catch them talking and saying how it is good to be free when so and so is not here. They may be a loving caretaker, but they wish to be free as well and I don’t see why they think that they are trapped like us at home when the truth is that it all drives us crazy in a stressful environment.

You can take that with a grain of salt because it is the most truthful thing that I have ever shared with anyone and now with Everyone! 

I rise I fall, if I walk I am fine although if I stand for a minute, I fall. This recently happened to me on Monday, MY fault - leaning against a wall speaking to Michael, my brother with my grandmother standing behind him so I fell straight down smashing the floor again, this time I did think that my elbows, the right one mostly, was broken. I notice Michael standing there and my grandmother laughing behind him. I know that my other brothers, Chris and Anthony and my wife would have tried to catch me even if they weren’t able. I was down in pain, screaming in agony - hopefully you may never experience this. I rose up and in complete aggravation at her smiling at me and so I scared her away for the rest of the day by kicking the wall I was leaning against as Michael told her to leave. There is nothing worse than having someone laugh at you who doesn’t understand!

Lucky for me though my elbow’s where not shattered or broken as they felt, but bending them was still difficult. I sat in the chair that was behind me and waited for my mother to return from her 5 min trip she needed to take. I told her what happened of course after she saw me with swollen elbow’s, I needed to put ice on. My elbow’s where patched up that night with KT Tape Pro Elastic which has Kinesiology Therapeutic Synthetic on it for athletes and anyone in pain and works great for any body part.       

There is something though that should never be forgotten which I have told myself since I was a young teenager and has kept me strong ever since which I just happened to find a picture of the other day for the first time.  I believe this to be true for the strong willed like you and I. It goes like this:

YOU WERE GIVEN THIS LIFE BECAUSE YOU ARE STRONG ENOUGH TO LIVE IT!

 And don’t ever think anything less of yourself!

I have always told myself that I would not want this problem of mine to be cursed on my worst enemy and definitely no one in my family because I know that none of them would be able to withstand all the drama I’ve been put through. You hear all the time that there is no cure for this and for that like we did not know and it that supposed to make us happy? No. I am pretty sure that the 65 Million people living with Epilepsy on Earth have figured that out already for themselves.

You all know from my pictures, not all great looking, but I am still here after all the drama and still look the same as on my home page of my crazy life. Same guy still here for you. You have questions, I have most of the answers, lived through them over the past 4 years, but being as I said - House-Stricken - it has blinded me from the outside world; friends have to fill me in as well. I get what I need mostly from my family at parties because I’m not allowed to leave wherever I may be which is not many places!

NEWS FLASH

Money is nothing to me or to anybody really, you and I can be rich beyond belief and yet if would not change a thing about how our lives are or how we are treated by others. We will still be here getting stared down, no difference what so ever. Christopher Reeves, rich and could not help himself from falling off of a horse, breaking his spine and getting paralyzed. He is now gone. Michael J. Fox, rich and for the past 20 years has been battling Parkinson’s disease and is still acting, but behind the screen or interviews is extremely sad to watch. Money can not fix things, it just makes our doctors and their suppliers of medications and our hospitals richer because they don’t want us healthy living normal. They need us otherwise who is going to pay their salary and make them happy? Epilepsy has been around forever there’s no way that they haven’t found a cure for one of the 2 top major killers in the world, not a disease but something uncontrollable to the "lucky ones" that have it. I have an uncontrolled problem and I am stuck on a seat every minute of every hour and am told when called always to calm down and stay safe, relax!

I would love for someone to say just once to do something that I’m not already stuck at home doing. Just once would someone say “Hey Bruno, get off of that God-forsaken couch, open the door and go for a run, see if they can catch you” I know that they can’t, but who knows. It hasn’t been done in years, literally.

Is it so wrong to think that HOPEFUL thought for those who are House-Stricken and Strong, but even so a world without a cure is not the world we chose to live in.  
 

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!