CHRONIC TRAUMATIC ENCEPHALOPATHY-CTE
My struggles with head injuries, Life in general, and a revelation that I am a victim of CTE (Chronic Traumatic Encephalopathy).
I, as I am sure many other people have, sustained countable serious head injuries (sports and non sports related) during my lifetime. The last many years have been a struggle, in the sense that I really did not know what was going on with my health.
A few weeks back (today is April 7, 2017) after a strange incident a local shopping mall, I decided I needed answers. Through chance during an internet search session, I found a website that detailed the symptoms of CTE. Armed with this knowledge I have found a new understanding of my life for the past many years, and have found a renewed energy and acquired a tool (knowledge) to help me understand and function in the future.
Share your story here. I would love to hear about how others are coping.
What are the symptoms of CTE?
The symptoms of CTE include memory loss, confusion, impaired judgment, impulse control problems, aggression, depression, anxiety, suicidality, parkinsonism, and, eventually, progressive dementia. These symptoms often begin years or even decades after the last brain trauma or end of active athletic involvement.
SLIP AND FALL AND LOSE ALL YOUR TEETH
Sue, Zeke and I were in Somers Point, New Jersey for another one of our visits to Sue’s Aunt Ginnie. It is the only place we have gone lately for a vacation. It was late January 2013.
We just finishing watching a Syracuse University basketball game on television on a Saturday night. It was after ten o’clock and I was getting ready for bed. I usually take Zeke out the back door which is the kitchen door, to run around Ginnie’s giant back yard a little and do his business. This time for some reason I decided to go out the front door.
Ginnie’s house has two brick steps leading up to a cement landing that is her front porch and entrance to the front door. I knew there was usually a slippery spot there from water that drips off her roof. I was feeling really relaxed and not paying attention to what I was doing as I walked out the front door. As I watched Zeke run around the west corner of the house I raised my head a little to see where he was going.
In retrospect you really do not realize how much moving your eyes upward and turning your head in one direction or another changes your center of gravity, until you take a step a downward and slip on the ice on the first step. There was a new layer of snow covering everything and I just did not focus on going down the steps like I usually do. My feet went out from under me and I could see myself in slow motion almost three feet off the ground looking at me feet and stretched out parallel to the ground.
I actually felt the time in between my slip and the time when I hit the ground was like an eternity. I was just waiting to hit the ground. My back hit the sidewalk first throwing my head backward violently as a result of the impact jolt. In full control of my senses I felt the back of my head just above my neck hit the front edge of the bottom step as the impact threw the back of my head into the flat part of the step. I let out this very loud scream as adrenaline took over.
I figured my head was cracked and should have been bleeding or at the very least been knocked out. I struggled to my feet cursing and swearing as I started looking for the dog. Sue heard me yelling and came out to see what happened. I was lying on the sidewalk when she came outside the front door because she heard my yell.
I told her what happened when I finally stood up, and she said I should go the the hospital and get checked out. There was no blood or even a scrape, just a little bump on the back of my head. I was till conscious and not even dizzy, just a little disoriented or more alive from the shift of consciousness caused by that kind of physical trauma, something I had experienced many times before.
I went into the house and sat at the table. Sue and Ginnie came in and demanded I go the hospital. I said I was ok and did not need any medical attention.
I actually had a pretty good night’s sleep and awoke Sunday feeling good considering the fall from the night before. We were leaving to drive back to Auburn Monday morning so I just took it easy on Sunday. I think the Super Bowl was on or something.
The next day, Monday, I drove up to the rest area just past Clark’s Summit on Route 81. I stopped and asked Sue if she wanted to drive. When I was driving, maybe just past the Allentown rest stop on the Northeast Extension I started to feel an achy tenderness just below my jaw on the right side of my neck. As I was driving along I felt the spot with my hand. I found a swollen lump pretty big in size.
We made it back to Auburn and I had a pretty uneventful Monday evening except that the swollen lump seemed to be getting bigger.
Tuesday was a normal winter day. About one o’clock, I laid down on the bed in the room where I work on my computers to take a nap. I just felt really anxious and tired. I fell asleep quickly probably tired from the trip and still reeling from the fall and head crack on the steps on Saturday night.
Suddenly I woke up from my nap. My mouth was full of fluid. It tasted like blood and when ran to the sink to spit it out it was blood. My neck actually felt a little better where the lump was, but since I was still bleeding I decided to go to the emergency room emergency services in Skaneateles. It is usually not too crowded, I had been there before and they seemed to be quite competent.
I got in to see a doctor rather quickly when they saw I was bleeding and had blood in my mouth. After my initial consultation the doctor took x-rays to see if my skull was fractured. There was no fracture but the doctor made an appointment for me at Auburn Memorial to get a CAT scan on my head just to make sure there were no real bad complications from my fall.
In the emergency room in auburn I asked to see a Dr. Duk. He was oriental and small in stature. He told me he knew about my case from talking to the doctor in Skaneateles and said they would be able to figure out where the bleeding was coming from once they took the CAT scan of my head.
I had the scan and return to my room in the emergency unit and waited. Dr. Duk returned after a short time and said that there were no fractures in my head from the fall, but my teeth were all rotten and needed to be removed. I had a systemic septic infection from the rotten and cracked and broken teeth. The blood in my mouth was coming from the infection that broke loose as a result of my fall, and was spreading into my system. Dr. Duk repeated that I should see an oral surgeon and get my teeth taken care of as soon as I could. He gave me an antibiotic and sent me on my way,
I promptly made an appointment with my dentist Rick Lesch, who referred me to Dr. Paul Karpinski, a noted oral surgeon in town. I got in to see Dr. Karpinski in a few days, and the plan between myself and the two doctors was to remove all but six teeth that were the front bottom lower teeth and that all were still in good shape and not bothered by the infection. Dr. Paul said we should give the antibiotic time to work and scheduled surgery for Valentine’s Day, February 14, 2013.
As with all things medical there are always complications. As a result two previous surgeries where I filled up with blood that spread from the surgical site, my prostate surgery and a knee surgery, I discovered that I have problems with my platelets. According to my hematologist Dr. Boufal, my platelets are deformed or mutated and do not work correctly. So an hour before my oral surgery I had to receive a medication that would help my blood clot, and I had to take another oral medication. I was to take about an ounce and swish it around on my gums then swallow it.
Just as an aside, Dr. Boufal is an attractive blond French woman who speaks with a French accent. My first impression of her was that she was a little off center, but very competent, thorough, and caring. During my exam she asked if she could see and feel my testicles, a request I thought was a little strange for a blood problem, but I thought “what the hell.”
I stood up and undid my belt and dropped my pants. Dr. Boufal, who was standing in front of me looking at my face, promptly squatted down to get a better view. I could hear her skirt and slip and stocking stretch and rub against her butt and thighs as she lowered herself to her vantage point. She was in a squat position holding my prick in one hand and feeling my balls with the other. Not unpleasant at all. She said everything was ok. I was happy to hear that.
Dr. Boufal started the intravenous medication about nine o’clock on February 14th. things went reasonably well and I left her office about ten minutes to ten and Sue and I headed up Genesee St. To Dr. Karpinski. He was waiting for me and a nurse ushered me right into the room where they would do the surgery. I still had the needle in my arm from Dr. Boufal. It was to serve as a port for the anesthesia for the oral surgery.
Dr. Paul came in and asked me if I was ready. I said I was and he began to knock me out. I had the option of doing half the teeth one day and half about a month later but I opted to take all twenty teeth out at one time. They administered the anesthetic and I went out.
Sometime along the way I started to regain some consciousness, and felt a tugging and pulling and jostling on my body. It felt like I was in an airplane and flying through extreme turbulence at thirty-five thousand feel. I saw a little light and heard Dr. Karpinski scream, in a very slow distorted voice like in a movie during a slow motion scene “every fucking tooth…”
Apparently every tooth was so badly decayed, and the roots were so deep that they all cracked into pieces as he tried to extract them. It took almost two hours to finish the job.
I gradually came out of the anesthetic and was moved to a recovery room. As I sat in the chair the thought occurred to me that my fall was actually a blessing in disguise. How I did not kill myself or at least fracture my skull is one story. But here I was two weeks later sitting in a an oral surgeon’s office with all but six teeth gone working on getting rid of a septic infection. Things were getting better.
I eventually ended up in the emergency room again at one o’clock in the morning with excessive bleeding from the extraction sight. The bleeding would not stop and was coming out like a gusher. I was getting extremely dizzy from the loss of blood, and as a last resort shoved a bunch of paper towels into my mouth and called an ambulance.
By the time I got to the emergency room the bleeding was subsiding and the doctor, after another CAT scan, told me I did the right thing by shoving the paper towels into my mouth, and that the bleeding was just nature doing what it had to do. That made me feel a whole lot better as I sat in the semi-darkness of an emergency room cubicle at two-thirty in the morning. At least the bleeding had totally stopped. They sent me home after about four hours and that was that.
I eventually got proper fitting dentures and am living life happily ever after.
All from one moment in my life where I did not focus and concentrate on what I was doing, like taking a step down a stair without watching.
AN EIGHT FOOT LONG SPUD BAR ACROSS THE TOP OF MY HEAD (1/22/2015)
My golf exercise routine is somewhat unorthodox. I look for different ways to keep my swing strength up and to keep my core strength intact.
Somewhere along the line I acquired a solid cold rolled steel eight and a half foot spud bar that is about an inch and a half across. The bar has a sharp point on one end and a flat chisel point on the other end.
I grip the bar and swing it back and forth about waist high as a strength and flexibility golf swing exercise. then I will use it as a stretcher by bending from the waist and letting it lower to the ground, or hold it behind my back or behind my neck and turn as far as I can to the right and to the left. Not an easy thing to do.
I don’t even know exactly how much the fucking bar weighs. I do know it is bulky and cumbersome and a great way to exercise.
I used to leave the long bars standing up leaning in a corner of the house where the old laundry room addition met the house, where the water spigot was or still is since we remodeled that part of the house.
It was February a few years ago and most of the snow was melted but it was still very cold and the ground was still frozen. I hit wedges off the ice and snow all winter so I do get some practice but my exercise is limited to four miles or so of walking or skiing whenever the opportunity presents itself. Since it was sunny and the snow was gone I decided to go out back and do the spud bar drill to start getting my golf muscles ready for the upcoming season.
I went out the kitchen door down the steps turned left and headed to the back yard. I reached for the bar but it would not move. Upon further inspection I saw that the pointed end had sunk into the ground somehow and was frozen solid. Never being one to be beaten down by the elements I started to wiggle and jiggle the bar in the frozen ground until it started to loosen a bit. It finally started to move in a circle but the bar would not come out of the ground. I pulled and pushed and cajoled this god damned piece of metal with all by skill and cunning but it would shake loose. So I decided to use brute strength.
I grabbed on to the fucking bar and planted my powerful legs to either side of it and started to pull and push the thing as hard as I could. I pushed and pulled pushed and pulled until I could start to feel it coming loose. One last pull and it would be out. I planted and pulled as hard as I could and the bar came loose. I saw the grass and dirt on the far side of the pointed in fly loose in slow motion, then felt a blow right on the top of my head. I thought the house fell on me but quickly realized that the bar, with all the force of my final pull, had struck me flush on the head.
I was sitting on the ground by then but still conscious. I threw my hat in anger in response to my carelessness and stupidity and felt the spot on top of my head where I got nailed by the steel bar. I felt wetness and a hole in my head where the button on the top of my hat was sitting. The force of the bar hitting me drove the button right into my head. I looked at my fingers and saw blood.
“You are a fucking moron” I thought to myself. What do you do now? I was afraid and angry at the same time. I got up and was a little dizzy. “Ice” I thought “put some ice on your head really fast.” I was not knocked out, at least for very long, and could stand and walk ok but still had the matter of bleeding and a hole in the top of my head to deal with.
I walked over to the kitchen sink and washed my wound with warm water and a paper towel the managed to survive a little rub of alcohol in the spot that was bleeding. Upon further inspection in a slightly more lucid state I felt the hole to be a large dent. this made me feel a whole lot better.
I walked over the refrigerator and put some ice from an ice tray into a plastic baggie, held the bag of ice on top of my head and laid down on the couch. I kept ice on the top of my head for the better part of two house straight until the pain for the most part started to go away.
The bleeding stopped after a short while. I took a Motrin 800 mg as soon as I thought about it, kept the ice on my head and waited. I kept icing for a few days until I felt comfortable again with the feeling of my general well-being.
As time passed the thought of the incident passed with it. I felt no ill consequences from my stupidity, at least for the short term, and went about my business. So far so good to this day.
THE FLOATING AWARENESS
During my days as a football player in high school I know I had a series of concussions along the way. As a matter of fact from the time I was a little kid playing baseball with the guys on our field behind the Polish Home, I had been hit in the head with baseballs a number of times.
The first time I remember I slid into second base and was immediately hit in the head with a hardball that was thrown in from the outfield. This had to be in the late 1950’s. To this day as I sit here on February 3, 2015, I can still feel the jolt of the ball hitting the back side of my head. I can still feel the pain, shock, and numbness that set in afterwards I was hit. It is quite a vivid memory.
The one really crystal clear moment of a severe head injury from my high school days playing on the Auburn Maroons team came in a game against Union Endicott when I was a junior or senior, I really can’t remember which. The chronology is somewhat jumble but the memory is precise.
I was playing middle linebacker in the first half of this Union Endicott game. I had a feeling by the way they were set up that they were going to run to my left. When the ball was snapped I darted quickly left as that was the way the running back started to go. He did a jab step, when I realized they were running a trap to my right. as quickly as I could go and with great force I changed direction keeping my eyes on the running back.
Suddenly the realization hit me that this was a set up and that I was about to get creamed. As this realization occurred my vision shifted a little farther right and running at top speed I say a huge number 78 standing right in front of me. I jerked backwards running at top speed forwards, which is not an easy thing to do, and the next thing I remember is a a really hard solid impact before the lights went out. I ran right into this giant oak tree of an offensive tackle.
This was early in the game.
After that, my next conscious memory was of one of the guys picking me off the ground by the back of my jersey and telling me to call the defense. I looked up at the scoreboard as I was rising off the ground. I figured it was where I left off, only now the game clock read somewhere about two minutes and fifty seconds left in the third quarter. The lights above me were startlingly bright and I squinted as I got to my fee.
I looked around in semi-disbelief as I gradually came to my senses and called the defense. I only had a few seconds to “gradually come to my senses” as it was still in the middle of a football game.
I really don’t remember what happened from the time I first got hit early in the game until I woke up in the third quarter. An entire piece, timewise any, of my life was gone. I know I played in a totally unconscious state because I was still in the game when I woke up.
We still had a few games to go. I never told anyone what happened and went along with school, practice, games, and life, my regular routine, as if nothing had happened.
The only thing is that I gradually began to notice a subtle shift in my awareness. I was actually starting to follow myself around so to speak from above and to my left. My consciousness, being or awareness was somehow displaced from my actual physical body, although I did function normally as I watched myself at a distance.
There were times when the distance grew and I would be watching myself walk down the hallway between classes crammed in among all the other kids, wearing the bright colored sweaters that Ma bought me (sweaters that I always hated because they made me stand out I hated to stand out but it seemed as though I always did it was a habit, a way of life), sweating an wreaking of hormones common to a seventeen or eighteen year old male.
I was literally floating above myself as I went about living my life, floating above myself disjointed from my bodily anchor, the one thing that kept me here on earth. Somehow I was still tethered to my physicality as I watched my life unfold, literally yes watched my life unfold from another vantage point. The only good thing about it really the only comfortable thing was when I had to go up the stairs to the second floor of old West High, I was closer to the girls asses and bodies as I looked up their skirts from the stairs below.
I knew life was happening this way and I was aware of it although I really did not understand it. You didn’t talk about abnormalities of the psyche in those days, you didn’t want to appear to be unbalanced or deranged. Not like today when derangement and abnormalities of consciousness are the norm, common to everybody. I guess have always been a prophet of sorts living out of my time, living in a place way down the road from where I should be.
I just went with the flow because that was all I could do. I never let on that anything was strange or weird. Back then they probably would have put me on tranquilizers and locked me up. Today in 2015 they would have turned me into a sainted hero. A respected leader in the business of everyday insanity.
This vantage point of my awareness continued on for some time, years as a matter of fact. I played basketball and baseball and played football in college with my estranged vantage point of consciousness still in tact to greater or lesser degrees.
I saw myself walking around campus, playing football, sitting in class and having sex with the girls I met, making up for all that lost time in high school where not one girl would even give me a fighting chance at getting laid. The all had a dime pinched tightly between their knees. You would think a high school sports star would have gotten a little more respect.
Someplace in time my being merged back into my body. I started speaking from the mouth I have instead of hearing the words coming from off in the distance. I started seeing through my physical eyes instead of seeing myself doing what I was doing from a distance. Life began to make sense. I felt more relaxed. I lost my agitated state and started to feel a little more comfortable here on earth.
The space between me and myself was going away. Although from my perspective I don’t think the split will ever be totally healed