THE GOOD, THE BAD AND THE EPILEPTIC

On Saturday, November 14th after a late brunch in Bayside, we took a 4:28pm LIRR for 20 minutes to Penn Station and went to some places that Michelle wanted to show me like Bryant Park, which during this month and next for Christmas has about 30 to 40 booths, lots of sellers of ornaments mostly for tourists and an ice skating rink with a line of children wrapped around it. There is no Christmas tree yet there or in Rockefeller Center which made it easier to walk around without the over-crowded sidewalks and streets for a tree that is decorated the same every year. We walked around the Park and then to Lord & Taylor’s Christmas window displays under their gold lights which was beautiful.

After that Michelle knew a place that is open all year long, Christmas on 5th which is a very wide, long and Holy store with beautiful ornaments small and large as well as Nativity Scenes I do plan on purchasing, but we were short on time. Directly across the street was my favorite store - Barnes & Noble with a lot of movies and music - and vinyl’s on the second floor. I grabbed some books on the way out and onto St. Patrick’s Cathedral which had just been renovated beautifully all around, Michelle and I lit a few candles, said a few prayers and made some donations on its soon to be completion and then I noticed something on the right side of the church near the back - a Pieta’.

  A replica of Michelangelo’s who is widely regarded as the most famous artist of the Italian Renaissance. Among his works are the "David" and "Pieta" statues and the Sistine Chapel. Most of his work was done there in Rome where he passed away at the age of 88 in 1564. This one shone here though in New York is a little different and far less famous.

I purchased four prayer books in the gift shop and left. It was now 7:30 and we were off to our 8 o’clock dinner reservation at Ted’s Montana Grill, we reserved a booth because Michelle and I noticed from the past that there are only 6 booths and a reservation is necessary which I remembered and told her to call earlier. At 7:45 we were there and the booth was ready for us. After all of that walking I had not one problem from early in the day to Ted Turner’s Montana Grill when I noticed a saying from Ted Turner himself on the wall above us which reads: Do something. Either lead, follow or get out of the way. Funny, but true as well.

And then this happened on our way back home in Penn Station...

A problem which has happened 2 times before at different times and days, both in Penn Station. It was about 9:45pm and we were waiting for a 10:18pm train home that Michelle and I were trying to catch with hopes that this time, since the day had gone so well already walking around town – even though we were tired after leaving the restaurant, but not so much that we couldn’t walk back to walk off the food we had just ate.

We reached the station escalator fine, but as soon as we got on with people all around, I had a drop attack seizure and it seemed like I was up against a wall. More of a dream really; rather a nightmare. As I opened my eyes again finally I found 4 people, 2 couples - Good Samaritans - who had pulled me off of the escalator with my 200 pounds of dead weight which then felt like much more (a body soaked in water so to speak). Michelle could not have done it alone.

A woman had asked my wife, “Is he okay, he looks like he’s falling down” she grabbed her husbands’ arm across the escalator and Michelle told them I was having a seizure. I was then grabbed along by his friend/family member and they pulled off and sat me down on the ground. There were at that time people Michelle and I remember walking on by around me, they would have walked on me not caring if I was dead or not, just kicking me aside.

As I finally woke up I started to speak to them, dazed at what had just happened and yet being in Penn Station it was no surprise, more like a curse destined to happen. As I started to say thank you to them the first woman looking down at me, after Michelle had told them that I was ok, "he’s had a seizure, he’s been Epileptic for about 30yrs", said to me that she has family members with seizures too so they understood my problem, no need to explain. They had also called some cops over to help me up, 6 Officers arrived and they wanted to call an ambulance for me, but I told them to hold on and give me a minute.

As I stood up and took off my now dirty leather jacket I handed it over to Michelle and they had a stunned look on their faces, I recall. They looked me over and saw that I was not hurt and I said thank you anyway but I’ll be fine. Although not 100% and still a bit shaken-up an officer asked us where we were headed and walked us over to the seating area about 300ft away and asked the gentleman at the front-desk about our train time and what track we would be on. Michelle and I sat as the officer pointed and we waited for our train to come.

The two times prior this year, the second was after going to a NY Ranger game in Madisen Square Garden as we leaned against a wall away from everybody else that could get hurt from me I still dropped what I was holding and slid down the wall to my right, Michelle was to my left, as I had gotten up there was one cop there asking us if we wanted any help and we both said no. As I probably looked like a drunken fool, which I was not - I was all scuffed up from the dirty floor from my face to shoes, yet nobody this time cared to stop and lend a hand, just stepped away from me.

Not everybody is as generous all the time but there were a few the time before that when Michelle went to get our tickets home as I stayed standing behind her against the giant center pillars near the ticket booths when I slid off of that too. Michelle saw and ran over to me as well as some other people who stayed around me so that I did not get trampled over by a crowd rushing to a train that had been called until I got myself up again. I remember that those ladies that found me there had themselves or family members with the same issues. In Penn Station when a train is called, if you don’t know it is like – All hell breaks loose for a seat and death would have come of it!       

On the train home now that night I found us two seats opposite from each other, didn’t care as long as we had somewhere to sit and put our bags down.

Michelle and I learned something after that last dreadful fall, to never take the LIRR home again because it seems no matter what time of night it is or what great day we had in the city, it will not end well in Penn. So for that matter we will be taking an UBER Car Service home, which is beginning to replace NY Taxi cabs in the city, which I have no problem with. Something tells me that a $40 car/cab service is safer than injuring myself or others because people like the ones that found me lying on the ground will not always be there!

There will be more bad than good in your life - unfortunately. Just try to stay positive about your life and you just might get through the hell you may be living in, if it hasn’t found you yet!               

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.

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!