• Survivor or Caregiver

TBI One Love Survivor Charlie Ross Jr

My name is Charles (Charlie) Ross Jr, and it has been over 30 years since I had my TBI's in November 1985. I remember nothing of the accident at all. What I say of the accident is what I learned after the fact. I had the paddles put on me before I got on the helicopter to fly to the larger hospital in St Louis. The Dr's even told my parents they were removing me from intensive care to make room for someone who might live. I was into a coma for 50 days. There was once, when I was in the coma, my blood pressure got so extremely high, my parents were forced to leave the room.  This is important, I will explain later.   I spent over 10 months in the hospital initially. I was in a wheelchair for 1-1/2 yrs. and had 7 summers of surgery to make it where I can now walk with a cane.

I have severe memory problems, short term was, and is still bad today. I had been having what I called spells where I would get a feeling like a chill in my spine. My parents noticed the staring while I was in the hospital even. They took me off seizure medicine because they did not believe I was having seizures. I know those spells increased in frequency after that. I could go days with no spells, but other days I could have hundreds. They would just last a few seconds usually. Mom thought they lasted longer sometimes.

As the spells increased, the feelings I had changed too. I began to notice the feeling like I needed to have a bowel movement, I never did that I remember. I would get extremely hot, and the sweat would just pour out of me for a few seconds sometimes. Mainly at night, I would wake with the spell and I would have a horrible taste in my mouth. I was driving to school at the same time while I had these spells after I had got my license back. I could have been driving, in class, watching TV, walking, sleeping, it did not matter. Nothing I ever noticed triggered them. 

 Four years after the accident, in my sleep on New Years Eve night 1989, I had a tonic clonic (grand mal) seizure. I remember screaming because the headache was so terrible.  When I put my head back on the pillow, it was soaking wet, I felt it against my cheek.  In the morning light after I awoke, the wetness on the pillow was blood, I had bit my tongue.  I had also wet the bed, but I don't remember that.  After a visit to neurologist, he confirmed the seizure, and it was determined that all those spells I had since the accident were petite mal seizures. Treatments finally began for the traumatically incurred epilepsy the doctor finally said I had.  I took Tegretol.

I read on the Epilepsy Foundation site about seizures then.  I found that besides the tonic clonic seizure I had, my seizure symptoms matched those of partial, complex partial, and absence seizures.  I think that is all.

After I started on medication, the seizures decreased dramatically. I would still have one, and afterwards, when I went back to my neurologist, he would increase my medicine. That helped for some time, but they never stopped completely. Even though I had the severe memory and physical problems along with the seizures, I managed to get two Associate Degrees over nine years, I failed to get my Bachelors with the memory problems.

I started working with my last degree and the stress was so powerful to maintain the job. I begun to have blank spells. Maybe I had them before, but never remembered or realized it. Why I knew I had them was because I was driving now, and I would have an accident where I hit someone in the back end. I would come out of any blank spell immediately, but never remembered what had happened, other than I hit someone. I figured that they hit the brakes quickly in rush hour traffic, and I could not stop. I had so many jobs, mainly contract without benefits.

Over the years, I would have an accident every year or two. Finally, I realized before each accident, I had that strange feeling also. So then I knew what the real cause of the accidents were. After 15 years of work, I lost my final job. I moved in with my parents again. The new neurologist started me on a second medication, Keppra, and that helped to slow the spells down. It did not stop them though.I moved again and got another neurologist, she ran an EEG, and said I had a stroke at some point in time.  Having no way to determine when, she suspected that I got it with the TBI.  I think it occurred when my blood pressure got so high, and my parents had to leave the room, like I mentioned before.

This neurologist put me on two more new seizure medicines, Zonisamide and Gabapentin, and a second dosage of Keppra. The Keppra, with such a heavy dosage, made me have mood swings. I take a lighter dosage in the morning and heavier at night. All together, it was over twenty-two years after treatment began and twenty-seven years after the accident before the right mixture was found and I felt in control again.  My insurance quit paying for Zonisamide, so I was put on Vimpat.  During the change, I had a couple small seizures, but have been good ever since. I moved back in with my parents again in late 2014. I helped my parents the best I could between the three hospital stays and two operations, as I drove my Dad for cancer treatments before his death in September, 2015. 

I hope my story serves as strength, encouragement, and determination for others with TBI's to never give up. I was never supposed to live! If I did, I would be no more than a being in a chair. Unable to do anything for myself. Here, I am writing my story, I drive, I went to college, got two Associate degrees, and I worked for 15 years. There is so much more, but anyone who reads this story should know that anything is possible. You may not accomplish as much as I did, or you may accomplish more. Just know that you should never give up on yourself. Feel proud of what you have accomplished.

Never let anyone put shame on you for what has happened to your body. If they would be in your shoes, they could of never done what you can do, and that is survive! Be proud!

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