Bruno Fiacco

STAYING HEALTHY, THE EPILEPTIC WAY

I have been battling seizures for many years. I want to share my story and help others live better everyday.

Filtering by Tag: November is Epilepsy Awareness Month

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.  
 

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.