It’s a wonderful wife

My beautiful wife!

When I was a sophomore in college at East Texas State University in late 1969, the university changed the way the semesters were scheduled by moving fall semester finals to before Christmas rather than right after. That gave us nearly a month between the end of fall and the beginning of the spring semester. Not wanting to be idle for that time, I wanted to get a job to make a little money. My sister Sande, a sophomore at South Garland High School, and I headed out to Northpark Center which had opened just four years earlier. She immediately found a job as a waitress at Kip’s Big Boy Restaurant, but I did not want to work waiting tables so I applied at all every other non-food shop in the mall – over 150 at that time – and got nothing, even though it was just three weeks before Christmas. Not finding what I wanted, I went back to Kip’s where they hired me to buss tables.

On my first afternoon I managed to drop and shatter a full tray of dishes, relegating me to the kitchen where I spent the next month washing dishes. On the up side, I met one of the best-looking girls I had ever met – Jean Caskey. I asked her out to a concert by Dionne Warwick, but since that was not until February I also took her to see Midnight Cowboy, which had opened that past summer. After we saw the movie I asked if she was REALLY hungry, and when she said yes, I took her to Phil’s Delicatessen, where their burgers were huge.

Since I came home from Commerce every weekend to help my mother with her interior decorating business, I was able to take Jean out those weekends. We dated for two-and-a-half years, getting married August 4, 1972, less than three months after I graduated from ETSU. We moved to Carrollton where I had gotten my first job and eventually bought our first house there five years later. We also were able to do a good bit of travelling. When I worked at Lone Star Gas in downtown Dallas I was able to attend job-related events all over the United States, often taking her with me – Washington, DC; Boca Raton, FL; New Orleans; New York City; Anaheim, CA; Las Vegas; and Colorado Springs. We also made trips on our own to Corpus Christi and Rockport (on our honeymoon), to visit her sister Sue in Charleston, SC; skiing in Colorado; and many other places all over Texas, the US and even Guadalajara, St Thomas, the Bahamas, Canada and Britain.

We both loved to eat, so we have done that both at home and everywhere we traveled. We’ve had Chicago-style pizza in Chicago, muffulettas and beignets in New Orleans, Katz’s Delicatession and Carnegie Deli in New York City, and many great dining experiences everywhere we went.

Jean has been with me through thick and thin. About a year before we were married, I decided to buy a motorcycle and pick her up for lunch at Zuider Zee restaurant, where she worked. On the way there I wrecked the bike, breaking my jaw. Of course she wonedred why I never showed up for lunch – I was in the hospital! Then in Tulsa the summer of 2003 I spent a month in the hospital, along with nearly a year in rehab, from Guillain-Barre syndrome. And, of course, most recently on November 1, 2012, I ended up at Parkland Hospital after being hit by a car, suffering a traumatic brain injury.

Jean has been there to help and support me ;every step along the way. With the TBI keeping me from being able to take care of the bills, for the first time in her life Jean had to take over those chores. I hadn’t meant to keep her in the dark about our finances, she just did not have any interest. Two years ago she and Evan had to dig through my stuff – mostly online because I received and paid bills online whenever possible – to figure out who we owed and how to pay for everything. Jean worked miracles getting me organized and taking care, not only with the bills we already had, but also the new ones resulting from my injury, from medical bills to long term disability and Social Security Disability Income.

I always knew how wonderful she was, but after the past two years, I am truly amazed at what she is capable of doing, for me and with me.

Jeannie, I admire and love you, beyond belief!

Dysphagia

Dysphagia is the medical term for the symptom of difficulty in swallowing. All or part of what I swallow goes down the “wrong way,” into my lungs rather than my stomach. This kind of swallowing happens occasionally to everyone, but they usually then start coughing, which clears the problem. Even most people with this dysphagia can do that. But some – including me – have “silent aspiration” so I don’t realize the swallow has been misdirected, and the food continues into the lungs with no coughing or other awareness. Over the next few hours and even into the next few days I will usual manage to expel that food, but I do that more from “clearing my throat” than simply just coughing, although it is really the same thing; I just have a bit more control over it and it usually isn’t so loud. When I am outdoors I can simply spit it out. Otherwise, I just chew it up and try to swallow it again!

My dysphagia was caused by the accident that also caused my brain damage, or, rather, the subsequent removal of part of my skull in order to relieve the pressure caused by the swelling of my brain. The doctors knew about the dysphagia when they attached a gastrostomy tube (g-tube) to my stomach. But while I was at Zale Lipshy they did not use the g-tube for feeding after I came out of the coma, but rather wanted me to eat normally, and chastised me when I did not want to eat at all.

I just realized that that is not true! That is what I have believed happened to me two years ago, but I have been wrong. The doctors who operated on me at Parkland had no way of knowing about the dysphagia! They inserted the g-tube only because I was going to be needing it for a few weeks while I was in the coma. The people at the Centre for Neuro Skills (CNS) diagnosed  my dysphagia after I moved there in January of 2013. And the folks at Zale Lipshy were not being mean to me because I wouldn’t eat; they did not know!

Debbie, pictured above, is the wonderful therapist who discovered my dysphagia and spent eleven months teaching me how to live with it.

Two years of therapy later

RAN (Rapid Automatic Naming) Module

Yesterday was the second-year milestone of the day when I was taken to Parkland with a brain injury. I want to let you know about the status of my recovery and what I expect for my future.

Two years ago I spent two months at Dallas’s Parkland and Zale Lipshy, followed by eleven months at Irving’s Centre for Neuro Skills, seven months as an inpatient and four outpatient while living at home. I then spent a couple of months in the Baylor Institute for Rehabilitation (BIR) Outpatient Services clinic in Garland, and for the past year I have been at the University of Texas at Dallas (UTD) Callier Center, Richardson, where I plan to continue my rehab into next year.

When I first began my recovery I could not read at all. In fact, I could not say or read any letters on the alphabet. I spent many months reading the list of letters (see the RAN page above). One of the last letters I had problems remembering was “K” which really caused grief for my reading teacher Kimberly!  The situation was pretty much the same for numbers – I could not count to ten or do any arithmetic. I could not remember where I had worked or what I had done at work. I could not remember where I had lived – even six months later I could only name four of the seven US states in which I have lived. I remember a time when I would try to talk about Oklahoma, where I had lived for ten years from 1997 through 2007, by asking Jean, “What’s that state just north of Texas?” Even now, two years later, when I hear a mention of “democrats” or “republicans,” I have to think a second before I can remember which party is which. And remember, at the time I was in a coma in Parkland, we had the 2012 election for which I had been a CANDIDATE!

While my ability to read is still at about a 4th grade level, I never lost my ability to write. About six months into my rehab at CNS, my counselor Brian wanted to see what my writing skill was – since I had such trouble even reading at all, no one had bothered to check my writing yet. He asked me to sit down at his computer and type something, so I did and quickly typed, “Now is the time for all good men to come to the aid of their country.” I could type that completely in less than one minute! But I still had difficulty reading it, even after I had written it! Apparently two different  parts of the brain control reading and writing. Similarly with math, after struggling with that for two or three months, I simply awoke one morning able to easily do basic addition exercises like 6 x 8 = 48 and 9 x 7 = 63. Just a few of weeks earlier Kimberly had given me a page of 100 arithmetic problems to do and after struggling through seven or eight problems, I put down my pencil and said that I could not do it. She looked at what I had done and I’d only got one or two correct. So after I told her about suddenly remembering arithmetic, Kimberly gave me that test again and I completed the rest of the page in less than twenty minutes and got all the rest – about 92 problems – completely correct!

I am also still working on my memory. Originally I could not remember the names of states, countries, people or anything else. My favorite person at CNS was Nicole, my Neuro Rehabilitation Specialist. It took me six months to be able to remember her name, and even today, it escapes me more then I’d like to admit. Some names I have no problem with: Jean, Evan and even Mirjam, but most names I still have trouble remembering.

There were a couple of injuries resulting from being hit by that car that were never identified during my time at Parkland. At CNS they knew that I had some vision problems and they suggested that I go see a brain injury specialist about it but because of the costs involved I never did that until last month. Dr Poonam Nathu found that I needed some exercises to strengthen my vision and also wanted me to switch to bifocals to improve my reading. She called Diane, my therapist at Callier to work out a program of exercises I needed. About the same time I had some x-rays done which found that the accident also caused a fracture in my coccyx which was mostly healed. I think that may have been why I had so much trouble on my wheelchair at Zale Lipshy and kept wanting to go back to bed in my hospital room all the time. Anyway, since the fracture has pretty much healed over the past two years, and the pain is mostly manageable, I will probably get by with just using a coccyx orthopedic comfort seat cushion – also known as a donut pillow.

But even when I do struggle with some parts of my rehab, so much else is coming nicely. Two years later I am happier, stronger and healthier than I have ever been in my life. I have gotten into the habit of daily exercise, learned to eat everything (even all the things I used to hate), lost over a hundred pounds and retired from working. And I am now signed up for Medicare, which starts January 1. I love it!

 

More from when I awoke from the coma

It has been almost two years since I had a fist-sized chunk of my skull removed and stored in a freezer for nearly three weeks, and about another month before I began to awake from all that. By then I had been moved to Zale Lipshy University Hospital, located on Harry Hines Boulevard next to Parkland Memorial Hospital.

Right away I figured out that I was in a hospital somewhere, and that something very wrong had happened to me. I did not know where I was – at first I thought I was in Oklahoma City, most likely because I had dreamed about being there. I had no memory of why I was there or what had happened or how long I had been there. I did not know what day it was and whenever I was told, I quickly forgot. In my mind I thought maybe I had been there for about a year. I knew that my father had died, but I could not remember how long ago that had been (it was actually October 2, 2012, almost a month before I was taken to the hospital). Eventually my family would explain all of this, but it took days and weeks for it to all sink in.

I had been losing weight since shortly after I started working at UTD Callier in November, 2007, and had dropped from 325 to 290 about the time I went into the hospital. After more than two months in Parkland and Zale Lipshy and the brain surgery and the coma, I had lost more than another twenty pounds. I can’t blame that on the quality of the food at Zale Lipshy. In fact they tried very intently to feed me and it was all good stuff – from burgers and pizza to soups, salads, steaks, pasta, baked potatoes, and much more. I could call and order practically anything I wanted. I just was not hungry. They would send me menus of what was available each day with a phone number I could call and place my order, but unfortunately, I could not remember how to use a telephone. My family would offer to call in my order, but I just never felt like eating. The dietitians at Zale Lipshy even began coming to my room to take my order, but I would order nothing or would order just a small amount and then leave it on the table uneaten. I really don’t know why I was never hungry. It might have been the dysphagia, or something else related to the brain damage.

While I was in a coma from the brain surgery, my son Evan flew to the Philippines to fetch Mirjam, his fiance and bring her back to the United States. Evan had gone to the Philippines for over a month just a year earlier and had communicated with her via Skype for over three years. They planned to marry about two months after he brought her to Texas. Meeting and seeing Mirjam for the first time was a thrill for me. She is a very gentle and beautiful woman who has found a new home in our hearts. Instead of “daughter in law,” Jean calls her our “daughter in love.” Mirjam is really special in our lives.

It’s hard for me to imagine that I was only at Zale Lipshy for less than three weeks. Because that is where I began my recovery from the brain surgery, after being unconscious for seven weeks, many of my most powerful memories are from that period. One thing I remember vividly is feeling like the rooms were all tilted 90 degrees to the left! I have no idea why I felt that way. Maybe it was the brain surgery, or being restricted to the wheelchair. I really do not know and cannot explain it, but I kept wondering why the people who worked there didn’t experience it. I kept wondering why they did not topple over while trying to walk around! That awkward sensation vanished only after I moved to the Centre for Neuro Skills in Irving.

I had only two classes that I remember at Zale Lipshy, one for reading and the other for physical therapy. After each class the therapist would roll me into the hall across from the 8th floor reception area to wait for the next therapy class. Those waits were interminable. Sometimes it could be as much as half an hour before some one came to help me. And I was only 30 feet from my room and my bed. I got so tired of sitting in that wheelchair and leaning over 90 degrees, that I would wait until the receptionist wasn’t paying attention and wheel myself back to my room and try to get into bed. So they started locking my wheelchair, but the lock was at the front of the wheels where I could easily release them. So then they started to use something to fasten them on the back or lower down to make it more difficult, so I would holler and complain about the way they kept torturing me, to little or no avail. I only survived by leaving to go to CNS.

If you have any question or comments, please leave me a message on WordPress at spreng.wordpress.com.

 

Roommates at CNS Apartments

On January 2, 2013 I was loaded into a van in my wheelchair and moved from Zale Lipshy at Parkland Memorial Hospital to the Centre for Neuro Skills in Irving. CNS owns and operates a residential care living facility – an apartment complex – in Irving, nearly four miles from their therapy clinic. That is where I lived for the next seven months while I was going to rehab classes at CNS.

There are about nine buildings, each having four apartments, each apartment housing two patients. For each pair of patients there are six Neuro Rehabilitation Specialists taking care of us – mornings from 7:30 am until we leave for class in one of several vans sometime between 8:30 am and 10:30 am, depending on when we start classes for the day. The patients then return to the apartments either at 3:30 pm or 4:30 pm, depending on our schedules, where we have NRS’s who are with us from then until their shifts end at 11:30 pm. There are then additional NRS’s in each apartment from 11:30 pm until 7:30 am the next morning. I was rarely awake and active overnight, except when I went to the bathroom, so I rarely saw the ones who worked that shift.

During those months in the apartments, I lived in four different apartments with five roommates: Charles “Bo” Lewis, Ashton Cerka, Bo again, Charlie Thums, William “Bill” Donaldson, and John Sims. Like all the other patients at CNS, my roommates had brain injuries, but each had unique symptoms from which they were recovering. Before I suffered my brain injury, I did not know anything about that condition, except when I would see a car park in a handicapped spot and appear to be perfectly healthy when they walked from their car. Then I would jokingly say, “It must be brain damage.” I have now learned quite a lot about brain injuries because I lived and learned with people who suffered from many different types of neural damage, caused from both physical trauma – car and motorcycle accidents, strokes, aneurysms, seizures, surgery, etc. – and poisons, like mercury and lead.

My first roommate, in my first apartment, was Bo. He was a fireman from Mineral Wells, in his fifty’s, maybe ten years younger than me, who was married and had two or three grown children. I think his injury was from an accident suffered on-the-job. He had severe memory problems, especially difficulty remember words, places and events. In fact, shortly after I shared an apartment with him, he left for about a month for surgery. And since I had my own mental problems at that time, I don’t remember much about him then, except that he did not talk much at all.

My second roommate was Ashton, and I really don’t know why he was there, except that he had problems using his arms. What I do remember is that, whenever he showered each morning, he would always have music playing. I don’t know if it was a radio or records or his cell phone, but I loved the music pouring out of the washroom. In fact, I did not like the way, whenever anyone entered the apartment – my roommates, the NRS, or anyone else – the first thing they did was turn on the television, whether they intended to actually watch it or not. They just wanted some noise. I did not. From Ashton I learned that having good music was much more pleasant than mindless noise from the television.

I hadn’t relearned to use my cell phone at that time, but I did have a lot of recordings at home on my desktop computer. So I had my son Evan copy all my songs – over a thousand of them – to my HP/Palm tablet, which I had purchased about a year before I was hospitalized, and asked him to teach me how to use it. I did not know how to find a specific song, so I just set the app to play them all, randomly. From then on, if no one was watching the television, I would turn it off and start my music on my tablet from wherever it had stopped when I last turned if off. In August 2013, about the time I moved out of the CNS apartments, I got a new cell phone onto which I had Evan load all my songs from the tablet, and which I have sense learned to use much more extensively. I still play it every day, and still set it to randomly play everything, mainly because all of the songs I play are my personal favorites!

After I’d been in the apartments for about a month, Ashton and I were moved to different apartments, him to live by himself and me next door to my first apartment. I do not know why these changes occurred, or maybe I did but cannot remember, but I was in an apartment alone for a couple of weeks, and then Bo released from the hospital and moved in with me again. He was talking a little bit now, but it was mostly just “God dammit” and “oh, shit” and very little else. They told me this was a function of his brain injury and to just ignore it. But it was funny.

One thing that occurred with Bo was related to the fact that I was getting all my nutrition from a feeding tube, because of my dysphagia (swallowing difficulty). One evening after Bo had finished his supper – he was not on a feeding tube – he had a small cup of chocolate pudding. Since he was still in a wheelchair and I was not, when I saw him trying to find a place to throw away the empty cup, I go up and threw the cup away for him. However, before I placed it in the garbage can, I took my finger, wiped off a little bit of pudding that was at the bottom of the container, and ate it. Nicole, our NRS, as she was required to do, wrote about what I had done in the record book she was required to maintain about everything that Bo and I did in the apartment. Apparently we all got in trouble when the people at CNS found out that I had eaten something besides the meals I received through the g-tube.

After two or three weeks with Bo, he was moved to another apartment and so was I, but not to the same place. I was moved in with Charlie, a patient with a very different set of problems. He was about 25 and had received damage to his skull from a motorcycle accident. His parents, Sue and Roger, who were divorced and lived in Wisconsin where Charlie had grown up, took turns living in Dallas in an apartment they had rented just to take turns staying near Charlie during his TBI recovery. Charlie did not have any physical problems, but suffered from severe loss of memory. In fact, he did not know that he even had any memory damage. He thought he still lived with his mother in her Wisconsin apartment, and would often try to find his room upstairs, not understanding that he was not in Wisconsin and that this apartment had only one floor. He also could not remember when he had eaten and would look for food over and over again. During the month I lived with him, Charlie gained 15 or 20 pounds. When I last saw him, about six months later, he had put on at least another 20 pounds. He would also want to look for the stuff he needed to take to school, things like his wallet, cell phone, keys and notebooks, all of which he neither needed nor had. Every morning and afternoon, when it was time to go to class or return home, he would delay the vans wanting to find one or more of these items.

One thing I remember from my time at those apartments was that about once each week we would have a fire drill. Everyone had to get out of their apartment and stand outside the fence until the NRS supervisors had checked each room to insure that everyone had left the buildings. After one “all clear” signal, when we all headed back to our apartments, Charlie went into the wrong one. They pretty much all looked alike, but when he got inside, he insisted that was his apartment and refused to leave. After that incident, I made a point after each fire drill to escort him back to our room so that would not happen again.

Because Charlie would often come into my room and take some of my things, I asked to be moved to another apartment. My next roommate was Bill, who was almost well enough to move back home. He would spend hours asking Nicole what he had to do at the apartments to “graduate” and move home. He was my roommate for only two or three weeks before he was able to go home, but one evening, as we were getting to know each other, I told him that I was 93 years old – I was only 63, but had difficulty with numbers and memory because of my injury. He was astonished, of course, and repeatedly insisted that I could not be that old, but I kept insisting, until I mentioned this to someone else, who know how old I was, and who set me straight. I was so embarrassed and I had to tell Bill that I was not really lying, I was just confused.

My last roommate, after Bill moved out, was John Sims, an engineer at Bell Helicopters. He was severely restricted to a wheelchair and had to be bodily moved from that to his bed or anywhere else. He also had limited speech, so we were not able to get to know each other much. He did have frequent visitors – his mother and children – with whom I was able to learn a bit about him, and I often saw him at the clinic as they work on his mental and physical difficulties.

In late July I was happy that I could move back home, but I will never forget the roommates I had there and all of the NRS’s, drivers and other friends I made at CNS, all of whom helped me in my TBI recovery.

I still go to therapy class

Lisa, graduate student at Callier Richardson

It has been over 22 months since I suffered a traumatic brain injury, being hit by a car as I walked across the street to work, November 1, 2012. After a couple of days in Parkland Memorial Hospital the doctors determined that my brain was swelling too much and needed immediate attention. During surgery a chunk of my scull, about the size of my hand, was sliced off and placed into a refrigerator for a couple of weeks to allow my brain to complete its swelling and return to normal size. During that time I was in an induced coma so I have no memory from the time I was walking across Inwood Road until I slowly started waking up seven weeks later in a hospital bed at Zale Lipshy, UT Southwestern Medical Center’s neurological diagnostic and treatment centers, adjacent to Parkland.

I was only at Zale Lipshy for a couple of weeks, where I started doing physical therapy (which was very similar to what I had been through nine years earlier, when I was learning to walk again while recovering from Guillain–Barré syndrome). At the same time I received rehab classes with a speech therapist because I could not read – at all. I could not even remember the alphabet.

On the 2nd of January, 2013, I was moved to the Centre for Neuro Skills in Irving, Texas, for more intensive rehabilitation. CNS provides postacute therapeutic rehabilitation and disease management services for those of us recovering from acquired brain injury. I spent eleven months at CNS undergoing daily classes for educational therapy (speech, language, memory and reading), physical therapy, occupational therapy, social counseling and other problems resulting from traumatic brain injury (TBI). Much of my time and therapy was done at CNS’s apartments where I lived full-time for seven months before reaching a level of recovery where I could stay at home and ride their van each day to rehab.

At the apartments there were CNS employees – neuro rehabilitation specialists – who lived and worked around the clock seven days a week. In addition to helping us through our day-to-day activities – going to the bathroom, getting around on the wheelchairs, getting to the clinic and back each day for therapy – they helped prepare us for the essential knowledge of how to live on our own in the outside world – the world beyond rehab. That training included how to do my own laundry, make my bed, prepare meals, learn to make grocery lists for meal plans, and even how to do simple things like take a shower or use the toilet – not easy to do when you are in a wheelchair.

After I left CNS, I really needed to continue my rehab – I still have severe memory loss and can barely read – so I enrolled in classes at Baylor Garland, the nearest TBI therapy clinic to my home. I started there December 10, 2013, less than three weeks after leaving CNS. At CNS I was in the therapy clinic six hours a day, five days a week. At Baylor I was with a therapist two or three days a week for just an hour each visit. Quite a difference, but then I was recovering each say, little by little so that was sufficient.

Unfortunately I only got to stay at Baylor Garland for less than a month because my health plan – ObamaCare – started January 1st and I had to pay the full cost for my therapy until my deductible was fully payed. Fortunately, my therapist, Carey Hammond told me about a TBI therapy program at Callier Center – where I worked at the time I received my brain injury – that was not tied to insurance plans. As a university they only charged a small flat fee per semester because the program was designed to teach UTD graduate students to become therapists. In fact several of the therapists I’d had at CNS had graduated from this program at UTD Callier.

I started at Callier about a week after my last session at Baylor and have been attended their classes ever since. In fact the new fall semester started a couple of days ago. Last spring and this fall semester I am attending one day a week, on Fridays. Over the summer semester I went Mondays, Wednesdays and Fridays, just to see if I really needed that much therapy.

The rehab classes at each facility are quite different. At CNS there were six hour-long classes each day, similar to classes at high school or college, except for the group counseling sessions which consisted of a coundelor and three to six patients. We also had an hour at noon for lunch and we each brought our lunch from the apartments or from home. Most of the time while I was in the apartments I was not able to eat meals at all – I was restricted to a feeding tube because of my dysphagia (difficulty swallowing). I got off the g-tube about two weeks before I moved home, so that was the only time I had anything at the apartments with which to make lunches. After I moved home I made lunch before the van picked me up each morning.

During my brief time in rehab at Baylor Garland I had therapy sessions for one hour a day two or three times each week. Like at CNS, these were one hour sessions one-on-one with a therapist, either Carey or Theresa Welch. At Callier I had Friday therapy class from 9am until 11:30am. The first hour was a group class with half a dozen patients and as many graduate students discussing current events gathered by the students during the week for which they collected news photos to show the class. After this segment we watch a brief portion (ten or fifteen minutes) of a movie or television documentary selected by the instructor – during the spring semester we watched the movie Remember the Titans with Denzel Washington, during the summer we watched Long Way Round, a documentary about two guys riding motorcycles from the UK across Asia and North America to New York City, starring Ewan McGregor and Charlie Boorman.

Finally we would spend 45 minutes one-on-one with one of the students. This would be things like having me read out-loud from a book or read a story and answer question. They would also give me some exercises to strengthen my memory and recall. But the parts I enjoyed the most were just talking about things like their educational goals or my writing of this blog. To me this is the best part of my therapy sessions.

Currently my memory is getting a little better every day, but my reading is not improving as much, if at all. I do not know how much longer I will need to continue therapy, but I will see what happens this semester and won’t have to decide until December.

Paying for rehabilitation

I worked at the University of Texas at Dallas Callier Center for a little over five years. As a part of the University of Texas school system, employees had very good insurance. I usually signed up for the lowest cost options because I rarely got sick. The UT insurance system, unlike most businesses, was based on the school calendar. That is, instead of our calendar year being from January through December, it was from September through August. That meant the annual insurance deductibles were due starting in September.

In July of 2012 when I signed up for the 2012-2013 school year, I looked through the new insurance options and decided that at age 62 maybe I should add long-term disability (LTD) to the products I signed up for. I really don’t know why I did that, but it turned out to be a very good decision.

When I was hit by a car on November 1, 2012, and taken to Parkland Memorial Hospital, I did not know what was happening. I remember nothing from the time I got off the DART bus on my way to work until about December 17 about the time I was moved from Parkland to Zale Lipshy, where I began waking up from the coma. Even after waking up, it took many weeks for me to understand where I was, how I got there, what was happening to me, and particularly how I was paying for everything.

BC/BS of Texas payed for my first two months, though I’m told the insurance carried by Maria Reyna Paculba, the lady whose car struck me, payed some of it. Her insurance covered only $30,000 – the minimum required by Texas law. I’m told I received about half of that, with the other half divided between Parkland and the doctors who took care of me. During my time at Zale Lipshy I was interviewed by people from various rehabilitation companies in and around Dallas, including Pate Rehabilitation, Centre for Neuro Skills and others, apparently because I needed therapy not available at Zale Lipshy.

On January 2, 2013, I was moved to CNS, where I vaguely remember signing a bunch of papers agreeing to donate my son and add CNS to my will – just kidding! I guess they told me then what the costs would be, but I don’t remember any of that. I do remember they told me to immediately begin filing for Social Security Disability Insurance (SSDI), which I did, by telling my wife to find out what to do – I was in no condition to do anything. I had no idea at the time – even though I was probably told – how much any of that was going to cost, or how it would be paid. I do remember being told sometime in May that my Short-Term Disability from UTD had ended – it covered the six months from November 1st through the end of April – and that I was getting the LTD for which I had been paying. What I learned much later, is that while short-term disability pays 100% of your salary, LTD only pays 60%. So my take-home pay dropped from almost $3,300 to less than $2,700 each month.

However on the insurance side, things were good. My Blue Cross was paying 100% of my rehab at CNS, which was a lot. For the nearly seven months I lived at the apartments at CNS, the insurance costs were about $75,000 each month. After I left the apartments and moved back home, CNS would pick me up at my house and took me to the Irving clinic five days a week for another four months. That was costing BC/BS of Texas just $45,000 per month.

In July UTD ended my job at Callier Center. What that meant for me was I lost my insurance. Fortunately, the Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) is a law passed by the U.S. Congress, that mandates an insurance program giving employees the ability to continue health insurance coverage after leaving employment. What this law did was allow fired workers to get the same insurance they had received from their former employer by paying its full price, without the benefits provided by the company. In my case, instead of paying about $200 each month, I could get the same insurance for about $1,000 a month. I had come across COBRA several times in my career up to then, but had found it to be much too expensive to be useful. Now however, it was a bargain. In August of 2013 I signed up and began paying for my insurance through COBRA. This allowed me to continue my rehab at CNS. I had forgotten about the deductible that restarted each September 1st. I had to pay CNS for the $3,000 deductible (which I am still trying to pay now, and will probably keep paying until sometime in 2017, when it will be fully repaid).

In the fall of 2013, our federal government began offering (requiring?) the Affordable Care Act, or Obamacare. With a lot of help from Brian White, my Counselor at CNS, I looked into Obamacare and found that, compared to my COBRA options, I could get pretty much the same health insurance for half the cost, after figuring in the subsidy. So I signed up and got coverage nearly identical to what I had before. What I did not consider was that this new insurance is on a calendar-year basis, that is, I had to pay the deductible again on January 1st. Because the TBI rehab I was getting at Baylor Garland (after leaving CNS) cost $242 a day, and not being able to afford that out-of-pocket, I had to quit rehab. Paying that was not an option I could afford.

Thankfully, Corey Hummel, my therapist at Baylor Garland, told me about another TBI rehabilitation program available at Callier Center, where I had worked before! This program did not require any insurance – the program existed as much for the masters program students, as for the patients – it only cost $150 per semester. So I have been attending rehab there for two semesters this year (spring and summer), and plan to keep going there through the fall semester.

I’m still learning to read again

My mother tells me that I had learned to read, tell time and use a calendar before I started Kindergarten at five years old. So it was quite a shock when I began awaking from a coma in Zale Lipshy University Hospital and found that I could not read at all. I could not even remember the alphabet. In fact, when shown the alphabet written on a page, I could not even tell you what each letter was.

I was only at Zale Lipshy for a couple of weeks, from December 17, 2012 when I was moved out of Parkland, until January 2, 2013, when I was moved to Centre for Neuro Skills in Irving. At Zale Lipshy I had rehabilitation in reading therapy and physical therapy, along with how to feed myself, bathe and dress myself. I was so angry with myself for not being able to read, I’m sure I was exceedingly disagreeable to the girl who was struggling to help me learn the alphabet again. I wish I could remember her name, just so I could apologize to her. Still, while I was able to make some progress in my physical rehabilitation and life skills, I was still struggling with my reading when I arrived at CNS.

One of the first things they needed me to do when I first arrived was take a number of tests to establish the starting points of my rehabilitation process. The fact that I could not read made this process quite difficult. In addition, the first few days I was there, I contracted something that caused me to be unable to keep any food down. The first morning I arose at CNS, my NRS (Neuro Rehab Specialist) fixed me a terrific breakfast, which i promptly threw up all over the breakfast table. At that time CNS did not have anyone in the apartments during the day to look after patients like me, so I had to go to the clinic. At the clinic I spent my first few days lying on a cot in the physical therapy room where clinicians and therapists would come in and ask me the questions they needed answered, to establish my base line brain skills and memory. During these sessions I would periodically lean off the edge of the cot and vomit into a pan provided for just that purpose. I’m sure I made quite an initial impression on the therapists with whom I would be spending my days over the next year.

Each day at CNS included Speech Therapy, Education Therapy, Physical Therapy, Occupational Therapy, Counseling, Case Management, Nursing, Social Counseling, and lunch. My education therapists consisted of Amy Stalcup, Beth Cook, Julianna Richardson, Maribel and most especially Kimberly Webb (next to me in the photo at the top of this page). Most of the patients at CNS did not enjoy education class; mostly they wanted to get back to being productive, which meant recovering their physical abilities (PT), job skills and learning to drive again (OT). My primary focus was being able to read again. Kimberly saw that and responded by giving me a great deal of attention. Each day at CNS they posted that day’s schedule for each patient, but that schedule only told you which department and which hour you had that course. You had to go to each department’s area in the building to find out with which teacher you were scheduled to meet. Before the first hour each day I would go to the education department to see who I was scheduled with. Usually it was Kimberly, but often, when I was scheduled with someone else, by the time later that day when I arrived for that class, Kimberly had changed the schedule so that she was assigned to work with me. I understood that she did that out of compassion for my need to read, nothing else. But still, whatever the reason, I appreciated her dedication to helping me to read again.

I had the opportunity to experience education classes every day for nearly a year, and it allowed me to get where I can read a little bit. Over that time we worked on helping me to identify the letters of the alphabet, read words, short paragraphs, and other tasks. There was a list of short words that I would read out loud while Kimberly monitored how long I took to read it. As is common with TBI patients, I had little problem with longer words, that are easier to recognize, but had problems with words like WHY, WHO, WHERE, WHEN, IF, OF, ON, IT, IS, etc. At the end of my work at CNS, near the end of last November, my Reading Fluency was at grade 2.3, as measured by the Woodcock-Johnson III: Tests of Achievement.

I still struggle with my reading. When I need to read something, as with a bill or other business letter, I first determine whether I really need to read it at all or, can I skim it, or if I need to highlight, underscore, or circle important words. This applies to emails, magazines, news papers, and anything else I read. Probably my biggest problem is reading signs along the road as they move past me faster than I can read them. I also have a problem at movies when they have subtitles. They don’t stay on the screen anywhere near as long as I need to read them. At least when I watch TV at home, I can pause such things and take the time I need to fully read them. These problems are more nuisances now until I am able to read fast enough again. When life moves too fast, you often learn that you can do without it.

Where I am now

For those who have read my posts about recovering from a traumatic brain injury, I want to let you know, in summary, where I am now and a bit about how I got here. This does not mean I want you to stop reading the details of my last 19 months, but just if you haven’t seen me in person, you might wonder about my current status.

After two months at Parkland Memorial Hospital and Zale Lipshy University Hospital in Dallas, I was moved about twenty miles to the Centre for Neuro Skills at 1320 W Walnut Hill Ln, Irving, Texas. At CNS I continued my rehabilitation, which is still ongoing, though not quite there yet. When I arrived at CNS I was in a wheelchair, which I would need for about another two months. Also I could not read at all, a lot of my memory was blank and I could not swallow properly (dysphagia). For the first seven months I lived at CNS’s apartments, a residential care living facility for brain injured patients, at 3915 Portland St in Irving, about four miles from the clinic.

Classes at the clinic were six hours a day, plus an hour for lunch, Monday through Friday. I had therapy classes in Speech, Education (Reading), Physical, Occupational, Counselling and other areas like Social Development and treatment for my swallowing disorder. Because of the swallowing problem, I had a gastrostomy tube (g-tube) through which I received all of my eating, usually five or six times each day. I had to learn the alphabet again even before I could read anything. I still have difficulty reading certain letters and read very slowly. Even reading this blog is hard for me, but I have to keep reading because that is what I love. One of the areas that most of the other patients I was with at CNS were anxious to be able to do again was to drive a car. I didn’t really care about driving – I have been a dedicated user of area transit for 37 years, and still am – I just wanted to be able to read again. A lot of my classmates didn’t really like their Education classes, but I loved it and really looked forward to learning to read again.

Another class that I hated at first, but really grew to love, was Physical Therapy. I have never enjoyed exercise – part of why I was in the band throughout high school was my wanting to avoid any physical exercise. But because of the fantastic training specialists and resources available at CNS, I looked forward every day to using the treadmill and other facilities available. I also walked around the building every day, weather permitting, so that I could regain my ability to walk and to continue to lose some weight. The therapists told me that seven times around the building was about a mile and I found that I could do nearly two miles in the 50 minutes I had for PT each day. I would start walking each class even before my 50 minutes started, in order to get my two miles in. More than once I was called back in from my walking because they had something else planned for me that hour, but most days it was known that I was outside walking. Now, more than a year latter, I try to walk a mile or two each day, usually getting to do that three to five times a week.

In August of 2013 I was able to move back home, but I still went to CNS for six classes a day, five days a week, plus three or four hours a day for the trip each way from home to CNS and back. So my days were about twelve or thirteen hours long each day for the next four months until I finally “graduated” from CNS on November 21, 2013, a week before Thanksgiving. By that point I was stronger, happier and healthier than I have ever been in my life. I had lost a lot of weight, learned to exercise, learned to read at about a 2nd grade level (still too slow), lost my job (a topic for a future post), and pretty much eating again (not what my therapist Debbie wanted).

Since then I have continued my therapy at Garland Baylor for about a month and then switched to Callier Center – Richardson, where they have a brain therapy program that costs only $150 a semester. I went there once a week during the 2014 spring semester, and now plan to continue three days a week for the summer semester.

I am still working on my reading, getting more and more of my memory back, and enjoying every day, still getting stronger and still losing weight. This is where I am now and I expect to continue to recover for the rest of my life. Thanks for reading and please comment if you have any questions or want further information about where I am, or just want to talk.