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!       

SAFTY TIPS EVERY EPILEPTIC SHOULD FOLLOW

      Let’s Begin with Safety at Home

 The most common and dangerous place for Epileptics caused by seizure-related accidents. I myself have fallen in every single room from my own home to my parent’s much less enjoyable house I’m trapped in working though from the first floor, second or basement attached to the garage which is every families most dangerous part of the house. Cars, tools, lawn- mowers and such with blades on them to rip any ones face apart God forbid they fall on them. Very stupidly I came close recently on my cell phone because our basement for some reason gets no service, the call that came in was important yet myself more therefore do not do anything as stupid!

The first thing though you should know how to is the bathroom on how to take precautions, everything here I have done already and has helped me stay safe, mostly at home yet the house is not, it’s not mine to make safe yet is small enough to keep me in one spot or two. It’s odd but true but bathroom mirrors in front of sinks cause seizures when looked into which is why 90% of the time my hands get dried off on myself on the floor against the door. I look quick and then put my head down as I finish, tends to work well besides looking like a zombie into the mirror. Fallow these tips and you will do better keeping yourself safer in the most dangerous because of the most commonly used part of the house.     

To Give Some Privacy

 Place an occupied sign on the bathroom door instead of locking it. In your own home/apartment do not even close the door.

Hang the bathroom door so that it swings outward (into the hall or bedroom).  This prevents the door from being blocked if a person falls during a seizure. 

I would prefer that the door swings inward and closes behind you so that if you do fall against it you will not end up falling into the hallway behind you injuring yourself or anyone else so keep that rule switched around. It may work as is said in a much bigger hallways where it is safer to fall but I still would not prefer it.

Sing in the shower so people know you’re okay. If you don’t have any one to watch you or do not choose to then sing your heart out, just do not hurt yourself doing it by thinking to hardly.

Take showers instead of baths. This is a good tip and if you have bath-tubs in the house have one taken out for you and replaced with a stand-up shower, chair and curtain, no glass doors. This is very necessary from drop-attacks (Atomic seizures).  

Make sure shower and bath drains work properly so water doesn’t build up. Basically you don’t want to drown in a bath-tub, this is true for children mostly not being watched! 

Keep water temperature low to avoid burns. This is true for everyone bathing or showering as well as nonskid strips. Some showers have these built into them and work very well.

Use Tub Rods or Grab Bars

These bars I have put myself in as well and it helps me in getting in, sitting and becomes useful in having somewhere to hang my shower head while I am seated using my shampoo and soap. Outside of the shower I placed one onto the wall near the toilet bowl to grab onto the help with the rising or walking in long and wide bathrooms. This works well for everyone.

                               GENERAL HOME SAFETY TIPS

Sleep Deprivation and Stress

Two of the most major factors that cause seizures. If a shorter than 8 hour sleep is your sleep-habit then I strongly recommend you taking a nap for 1-3hrs a day at any given time that your body needs to shut down for a bit, you will know when. Don’t have someone tell you that it is time for a nap when you know that it’s not, will just make you more aggravated with them and yourself and seizures will occur. Some of us cannot close our eyes at times when we do not choose too and you will find yourself fighting them off and it just will not work for you that way so tell the person annoying you that now is not the time. Stress more than sleep deprivation will cause you to have a very hateful relationship with everyone in your life including your parents, family, friends and your personal relationship with your husband or wife. If you can figure out these issues in your lives and others not that they are always our fault because many families and husbands or wives especially cannot always deal with the flaws of an Epileptic or whatever you may be. Schooling is a problem and not a stress-free environment either. This is something that should be shared for all who have struggles with work especially and cannot get over the job that they hate and end up bringing their work home. That can make the most stress of all!

Daily Activities

For working Epileptics you are lucky to be still working, walking, talking to friends, going to the gymnasium and such as I did years ago and it was a much better then now life by experience you can say. However the possibilities of a more normal controlled life for an Epileptic is not as difficult as it may seem for some. For one as I told my own brothers when they asked me how I still get my work-outs in. I explained, with high tension exercise bands by Black Mountain for men and women for all types of performance. From yellow 2-4lbs for woman to 45-50 and 70-75 Purple and Atomic, which I use for every different type of exercise either standing for upper body work-outs to sitting for lower body work-outs keeping my legs strong from just sitting here all day long I told him. It’s simple to do and use as well as a rolling ball Perfect Fitness Ab Carver Pro by Perfect Fitness to complete my 40min work-out along with a daily protein shake which keeps me in pretty good shape for every third day. There isn’t anything wrong with a twice a week work-out compared to his everyday work-out. These products come with Door Anchors if needed, a Starter Guide and Videos on line. Go to amazon!

Do not use the most dangerous for an Epileptic to use, dumbbells, bar bells on a flat bench with or without a spotter for protection, medicine balls and cement kettlebells is okay for the normal exercising person, but not for us. I used to us some of these equipment’s in the past, those days are over and I am a smarter man now for it. 

Daily walks for 20mins a day helps or if not like me, get yourself if there is space a stationary bike to site and grab onto for the falling. I use a Schwinn digital bike and tells me everything I need to now about how far I biked which is distance, calories I burned, my miles per hour, heart rate by handle and many other routine work-outs. As far as anything else goes in my daily activity life, it doesn’t. Unless if you think that staying and typing behind this computer for you is an activity then I suppose so.    

Use an Electric Razor to Avoid Cuts

This is a very good safety tip because we Epileptics know that a seizure can easily slice off the wrong part of any body part, easily an earlobe, nose or throat which can cause death for men as well as legs for women. The number one option is for the use of a Phillips Norelco electric razor for both men and women and can be used in or out of the shower. It is simple and doesn’t require any shaving cream, just a clean and dry warm face or legs. You spin the razor not up and down, but in a round counter clockwise motion with 3 shaving heads each pulling the hear up and collecting all of the remains. There is rarely any bleeding if it is done right and a cleaning machine which collects all of the remains with it’s soap compartment and drying off mechanism as well, ready for the next shave. This is done by me seated on a white leather chair with a back and arms in front of a 6-inch vanity mirror, round and lite up and swivels around at 8x greater magnification.

Avoid Glass Tables

Anything from a large dining room table to a family room coffee table can be very dangerous to be around. The chairs of this or any table are very easy to slide off of so for that matter buy yourself or just use a chair with arms that one may have, sturdy! Fake wooden chairs made from compressed wood chips by cheap manufactures are very easy to break by anyone sitting on them, table as well.

Avoid Scatter Rugs

Wall-to-wall carpeting or soft flooring may reduce injuries for individuals who fall. Wall-to-wall carpeting is not as popular from the 1960’s, 70’s and 80’s so large rugs in rooms where falls occurred most with floor padding underneath along with floor runners in hallways can be very helpful. I fall in all rooms from kitchens to Living rooms and bedrooms with floor runners and a large micro-fiber memory foam rug in the bathroom all work well in keeping me safe.    

Use Protective or Padded Covers

On faucet handles, nozzles, or the edges of countertops to help cushion falls and reduce injuries. This is very helpful technique, every corner in my home, every piece of furniture is padded and my entire bathroom as well. The padding comes in large rolls which can be cut as needed and corner pieces comes as ordered.  

Use covers or enclosed heating units or radiators. A floor unit I have covered with the same padding because where the unit is covered from side to side and the center where the cover splits and is covered can still cause problems from falling individuals like myself. Before we covered mine I fell right onto it cutting my ear pretty nicely but not deep.  

Electrical equipment such as hair dryers or razors should be used away from any water source. This is not just a tip for Epileptics but for everybody!

Secure Televisions, Computers or Other Things That Could Fall off Tables

Televisions can be kept far from you on a wall in a kitchen or on a wall unit in a family room or in the corner of any bedroom on a stand away from yourself or others. Computers, phones, books and such as plates, cups and utensils are things that I can only say good luck to you because there aren’t any tips I can give other than that. Things fall all of the time, just hope that it doesn’t break or get lost and isn’t too expensive, as a computer. One tip, don’t place your computer in front of you on a folding coffee table because it will get knocked off by kicking it more than once so for that a sturdy table or desk will work better if need be.    

Use Fireplace Screens at All Times

Yes fireplace screens are necessary at all times for everyone especially with children. Open flame fireplaces are fun to have hearing the wood crack but sparks fly out of them, even from fake wood starters placed underneath dry wood to lite them. Sitting on fireplace ledge is not a good idea either for anyone. I know myself about these open flames because I had them in the past yet, my mother very stupidly had set her shirt on fire by sitting next to one in the past. She is fine, we put it out before it caused any serious burns! Now about electric fireplaces my parents have through two rooms, centered on each side with glass screens can be seen through either as a pretty fake burning image or with heat out of the bottom of them into each room, but the heat can build up quit quickly so we don’t put it on. These glass screens though can be fallen into as well which I did myself sitting in front of them on the ledge while I was petting Sammy, no damage was caused there but gets my parents crazy by sitting there whenever so I don’t.

Avoid Clutter in Rooms

Also look around and make sure there is room to fall safely. This is something I see more that would cause problems for the clumsy, girls, the young and older who seem to bump into everything in their way with legs in such pain they don’t know how it happened. Sad but true. We have no clutter in our open rooms, not hoarders, just things to bump into with sharp corners around bad for children to smack into and myself.  

Have an Enclosed Yard

for children to play and prevent wandering during a seizure. This is a funny, but true story so yes enclose the yard for all children. A couple a years ago in my uncle’s yard up on a hill in Manhasset fenced in the back so that we can play and not lose anything or fall off of down the hill rolling onto a street. But while playing volley ball in the summer I was told this by my family laughing. They said as I was sitting at the table, “Bruno” ‘Yeah what’s up’ “Do you see that hole there in the fence” ‘Yeah’ “well that’s from you when you were playing there running, falling and ramming you head down into it”.

End of Story.

Have a way to call for help if you are alone. Look into alarm systems, medical alerts and other safety devices! If you need help with any of this, give me a call, you all have my number or email me.

SAMMY, ONE AMAZING DOG!

Sammy is now 10 years old, born on July 10th . It all started at a puppy mill in Lancaster, Pennsylvania, Amish country on August 27th 2005 by my brother Michael, making the dog now 64 years old. The ratio in case you don’t have a dog is 7:1 but 1:1 their first year to humans. Sammy is a fun loving Jack Russel Terrier, very smart and very strong. His breed is something special, one of the smartest of all and I have a true story to prove it. Jack Russel’s are small to medium sized dogs, on average 15 to 20 pounds and definitely a Terrier. They are a hunting breed with a long snout, speed and strength and what hunters love most about them – catching rabbits mostly.

Sammy is older now and weighs in at 26 pounds.    

He runs like a bullet, made his own track in our backyard at a previous house which he enjoyed compared to the new house he has lived in the past five years. The first five years were perfect for him to grow and run and have fun. The rest of us, besides my mother were working at the time and two brothers in school. The first year my mother hated Sammy, despised him. She would ask all of us at the dinner table many times this question while in an angry tone. “Who would you guys prefer to live with, Sammy or me, make your choice”.

My brothers Chris, Michael, Anthony, Dad and I every time yelled out “Sammy”. She knew that she was not going to win so the question stopped. After that Sammy started to grow on her to become her most favorite in the family. He would chase the cats away constantly, but they would return because Chris fed them, always. I’ll get back to that later. Sammy learned English and Italian, some tricks and how to respond by making funny sounds which he picked up from Michelle who he fell in love with. In 2012 after our wedding with me at my parents he noticed me back everyday, but the weekends and this is when he became my personal Watchdog.

Now a watchdog is a trained as a puppy for the needy of all sorts or as Canine Cops. Sammy was already seven, much older but just as smart. Dad told him one thing and one thing only which changed him - “Sammy, stay here and watch Bruno”, and that was all it took. For fours years so far he has stayed by my side always, in his bed when I sat on the couch I dread so much, only rose when I did and swung my hand to give him the signal to come and run to the back door or stayed with me while I ate at the table. He knew when and if I fell, always stayed by the bathroom door to listen. When we walked, he knew where the stairs were around the house and made sure that he was by my side on my right to keep me safe as well and he turned his head around to make sure that I was still there with him.

He truly is an amazing dog!  He loves birthdays and Christmas mostly because we allow him to open all of the presents and even look at what’s in the box to get his approval, from toys to shirts and ties, I kid you not. He is adorable when he smiles and you can just wonder what he is thinking. My little NY Ranger.  

Most of the time that I look at him I know that even though they aren’t saying anything that he’s smarter then we are. Michelle always says herself “If he could only talk, I wonder what he’s thinking”. I just tell her that “I think if he could Michelle, it would be pretty creepy”.  Michelle loves The Gremlin’s which is always what she’s referring too, the one that turns into a scientist in the Second movie. Would be funny, but that would mean all talking!

Any baby, child or dogs/cats, his breed is 100% safe. He loves any young creature, goes up to babies and stops in his tracks and puts his little wet nose onto them and turns away. Only my 2 year old cousin Nicholas has ever been knocked over, fallen and giggled along with every adult as well laughing because it was not intentional.

Sammy chases cats always as dogs do, but jumps right over the kittens aka his friends to chase the big angry ones that have the intention of hurting him. He barks and barks along with adults until you pet him, become his friend and he will remember you always and forever. But from chasing those 12 cats left and right, he ended up injuring his back legs/ knees (deteriorating joints) to where he was unable to bend them, forcing him to hop on his hind legs like a rabbit. Sammy spends most of his time in his bed away from even me, afraid and embarrassed of himself. He went to the vet twice who put him on pain killers and steroids because he was not eating a thing and losing weight, and it’s now October. He had lost a few big teeth on his right side in December 2014 and June 2015 and needed to have soft food only, not hard as the doctor ordered. I always gave him that kind and Michelle bought him many soft snacks, but then he stopped eating them as well. The steroids help for a bit but he refused to take pain killers unless he is tricked to, using cheese or fortune cookies. He stopped almost everything, would not follow me anymore as well as not walking up stairs, if he went out for his business, he would not come back in and had to be picked up. The 1inch stoop by the front door he refused as well, and has to be assisted.

On Sunday October 18, my brother Michael and his fiancé Despina got married and we needed him for pictures like at my wedding 4.5 years ago so he was called, not walking well but that somehow changed the next day. This can be possibly because we had 50 people in my parent’s house or more and the same amount the next day which is why I think Sammy decided to give it a shot and walk again. We all saw his legs walking like normal almost round and round. I was just worried of him getting stepped on accidentally. I was soo happy as was Michelle, many others outside of my immediate family did not know of his problems. I had Michelle with me almost the whole day to do what I wanted, to stand. It was a party and the seats were for a few people that needed to sit and eat so I stood and sat when the time was right and available.

Sammy is a one of a kind dog that will never be a replaceable nor would we want to. We plan on having him for as long as is possible! He keeps me company always and will forever. All dogs do go to heaven, this one will break my heart more then any pet ever has if I cannot see him smile in his bed everyday or napping next to me always wherever that may be or to see him waiting for me at the top of the steps or by the outside doors to keep me safe or hear him running with his dog tags on his color around his neck dangling.  

FUN FACT ABOUT SAMMY:

For the past five years since the central vacuum system in the house was installedSammy became what my mother calls him -

"The Vacuum Cop/Police".

Now Sammy knows where all of the central system vents are and absolutely must be the one to show my mother from the first to the last when she takes out the hose. He oversees every crevice in the house which is not the funniest part of Sammy around the house from top to bottom. He runs to each of these central vacuum vents, but then races back to me because he is terrified like a baby of each vent and jumps on me.

I have to save his shaking little body all day and yet he jumps off of me right back to do it all over again. :)