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.

 

Number games

Learning numbers

I learned yesterday that a new brain is in the process of development. This is special to me because it will be our first grandchild. Evan and Mirjam are expecting a child due in seven months, about Cinco de Mayo!

My own father Ted spent a great deal of his time helping to focus his son towards success in life. I learned to swim when I was two years old, I learned to read before I was five, and, like him, he wanted me to gain a mastery of numbers. Whenever we were together he would have me count, add, subtract, multiply and divide in my head. When I was ten the Federal Reserve Bank, where he worked, acquired its first IBM 1401 Data Processing System (computer), and he was sent to Endicott, NY, to learn how to program it. After he returned home, he started working with me to learn how to count in binary arithmetic: 1, 2, 4, 8, 16, 32, 64, etc, and later to program in Autocoder. In high school my nickname was “IBM.”

So after suffering brain damage, not only could I not read or even remember the alphabet, I did not know numbers or how to count. When I first arrived at CNS, two months after the injury, whenever the therapists needed me to answer questions to determine the levels and types of memory losses I had suffered, they had to test me orally. So, like Julie Andrews sang in The Sound of Music, I had to “start at the very beginning. . .  with A, B, C.” And mathematically, with 1,2, 3.

A different area of the brain is used for math than for language, so those two kinds of trauma recover at different rates. While I was still having trouble remembering which letter of the alphabet was which (and still do to some extent), I was more quickly able to recognize and remember numbers. That was partly because there are only ten digits – versus 26 letters – but also because of the early training I had received from my father. Thus after only two or three months at CNS, one morning I awoke to discover that a large portion of my numeric skills had suddenly come back. I could do basic arithmetic like counting, addition, subtraction, multiplication and division. What I could not do (and still can’t) was doing that in my head – mental arithmetic. But that wasn’t really much of problem. Even in class I could write the problem down, make notes, and still find the answers. Outside of class I use my phone or a computer to easily handle anything dealing with math.

I was so excited about recovering that part of my memory, and so determined to get my reading ability back, that I announced to Kimberly, my reading/math teacher, that I no longer needed help with the math and we could focus on my reading. Of course, she did not believe me and proceeded to give me a math test. She gave me a page of one hundred arithmetic problems that I had tried and failed just a couple of weeks earlier – I had completely given up after struggling trough just five or six problems – and I quickly finished it and answered all of the remaining ninety some-odd problems correctly!

The math was BACK!

Being cared for

CNS apartment kitchen

When I arrived at the Centre for Neuro Skills the afternoon of January 2, 2013, I was first taken to their resident care brain injury living facility (apartments), where I was assigned a room with Bo Lewis of Weatherford. I lived in the apartments from then until July 19, when I moved back home to Garland. There were six neuro rehabilitation specialists (NRS) who worked with us every day, around the clock. Their days started at 7:30 am, when an NRS would come on duty replacing the one who had been there overnight, since 11:30 pm. Patients attended classes at the CNS clinic begining at 9 am, 10 am and 11 am, staying until 3 pm or 4 pm, depending on their rehabilitation needs. Because I did not have any serious physical injuries,  I only went to the clinic from 11 am until 4 pm.

Some of the people I had helping me included Adriana (from Mexico), Ashleh (Irving), Bernadette (Las Vegas), Lareasha (Wichita), Lupe (Irving), Mary (Amish), Shirene (China), Amanda (Texas), Whibelle (Philippines), Kimberly (Chicago), Nicole (Jamaica) and Shantell (Lubbock). I don’t really remember all of their names and home towns, which is why I made sure to write them all down in my phone.

Usually in the mornings our NRS would make sure we woke up on time, showered, dressed, made the beds, straightened up our bedrooms and living areas, had breakfast, prepared our lunch to take to the clinic, and got us to the van which took us to class. The vans were later used to bring these NRS’s to the clinic to help us with our lunch hour. In the afternoons the vans would return to bring us back to the apartments, carrying one or two evening NRS’s to help. Each van had lift devices to load and unload patients in their wheelchairs, as many as three or four in each van. Other patients also had walkers, crutches and canes that needed to be loaded onto the van, not to mention steps and stands to assist us in climbing up into the vans.

These routines varied a lot depending on the condition of the patient. Since I was not able to eat any meals and got mine from a gastric feeding tube, a clinician would come to my room each morning to give me my feeding – which usually took about an hour – before I got up to shower and get ready for my day at the clinic. I would get other g-tube feedings at lunch, dinner and again late at night. Normally the NRS’s would prepare the meals or supervise the patient’s own preparation.

Bathroom time is always stressful when you are restricted to a wheelchair. First of all the doors in the apartment had to be wide enough to allow access, and it was often difficult to aim the chair right to get it through. You also had to park near enough to the toilet to move off the wheelchair, and then push it out of the way but still close enough to reach it  to get back on it afterwords. This kind of maneuvering took a lot of practice, and I would often have to yell for help from an NRS. Fortunately, they would often stand just outside the bathroom door for just those situations. And also because I would often need them to assist in wiping.

Showers were even worse. We had various kinds of seating for use in the shower, and often two different types depending on the patients sharing the apartment. Often I would have to remove my roommate’s shower chair and replace it with my own. This is in addition to what everyone normally has to do, such as making sure you have the soap, wash cloths and towels within reach.

There were a lot of other things these girls – I say “girls” because all the NRS’s I had were female. There were a few male NRS’s, but while I would see them on occasion, I never had one assigned to me. Each day Nicole would ask me a list of about two dozen questions designed to help me regain my mental abilities. These were questions like “where are you, why are you here, what day of the week is it, what is today’s date, what time is it, what’s the name of this place, what’s my name, who is your case manager, who is your residential care manager, what town are we in, what is the address” and more.  At first it was a struggle to answer any of these questions. But over time, I was able to remember most, if not all of them. I still have to check my phone for the month and day, and many of the names of the people I see each day, but it is coming back.

After I no longer needed a wheelchair, Nicole and I would take walks around the campus at the apartments, which was only about 2/10 of a mile. We began with just once around, but over the months that increased gradually until we were often doing four or five laps each day. As I have mentioned, I also did that most days during physical therapy at the clinic, eventually getting up to a couple of miles in an hour. One afternoon at the apartments they wanted to test my ability to find my way around the neighborhood, so another NRS took me on a walk from the my apartment to a nearby store and back, circling several blocks – about three quarters of a mile. The goal was not the distance or the exercise, but to make sure I could navigate my way around the neighborhood and find my way back to my home.

The NRS’s primary function was to help the patients progress toward becoming independent enough to leave the apartments and re-inter the real world. So I learned to do my laundry, plan my meals, do my own grocery shopping, prepare my own meals, clean my room and my stuff, and all the other things that are necessary in life.

We also had activities planned to get us out of the apartments, like going to the movies or nearby parks. I don’t recall doing this while I was in a wheelchair, but some of the other patients were, especially those who would go to a park. We also went to a Texas Rangers baseball game once, and one time a bunch of us were taken in the vans to a bowling alley. This mostly happened in the evenings, but the bowling happened during one class day, with CNS using a couple of their vans to take ten or twelve of us on an excursion to a local bowling alley. We only had enough time to bowl about six frames, but a good time was had by all! We also had parties, at both the apartments and at the clinic, usually celebrating the “graduation” of one or more patients who were finally well enough to leave.

I’ll have to say, the seven months I spent at the apartments of CNS were definitely the best time of my life. I was regaining my health, meeting many wonderful people, and making friends I would keep for the rest of my life.

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.

How I learned to love to exercise

I spent all my life avoiding any kind of athletics and exercise. At twelve I was on a Little League Baseball team, where I must have been the worst player in that league. Throughout the entire season of about 10 or 12 games I only played one inning in the field, at first base, and only batted once, striking out on three pitches. The next year the league instituted a new rule, which still exists, which requires all players to appear in each and every game. My family called that the “Pat Spreng rule of 1962.”

In junior high and high schools I was in the band partly so I would not have to take gym or physical education (PE). In college, we were required to take four semesters of PE, so I took archery, probably the least demanding athletic activity there is, even a little less demanding than bowling, another sport at which I excelled.

So on January 2nd, 2013, six days before my 63rd birthday, I arrived at the Centre for Neuro Skills where my daily rehab class schedule included not only reading, mathematics, counceling and occupational therapy, but also physical therapy. I thought that was totally unnecessary. Unlike many of the other TBI patients, I had no physical injuries (except for a strained left elbow, probably from landing on the car’s hood or windshield). I had brain injuries.

Although I arrived at CNS in a wheelchair, I had stepped out of that before my son’s wedding, just over a month later. Once I could walk again, I started walking around the CNS building each day that the weather was nice, using the treadmill equipment whenever it was not.

Then I started really thinking about my situation. I was serious about losing a lot of weight and here I was about to spend ten or twelve months rehabilitating my brain while working every day with a team of people who were the most highly-trained physical therapists in the world, not to mention being stocked with some of the best training equipment anywhere. I would be a fool not to work hard and take advantage of it all while I was there.

Let me tell you about some of these people, starting with Sunil, Vanessa and Whitney. Also Milena, Karla, Chris and many others whose names I can’t remember. Sunil is from India and has a terrific sense of humor. Early on he flat out just told me to stop using the wheelchair and just get up and walk. It wasn’t quite that easy, but within a week I was comfortable without it, and after a few more days I could climb up into the vans CNS used to carry patients between the apartments and the clinic each day.

Shortly after I began walking, Milena, a physical therapist from Maracaibo, Venezuela, told me that six or seven times around the building was about a minute. It took me about a month to work my way up to walking that far and I found out that in the 50 minutes I had for each class at CNS, I could usually make about 12 or 13 laps. So I would start as soon as I came into class, about five to seven minutes before class time to start, allowing me enough time to do fourteen laps, about two miles. My instructor for that day soon knew that that was what I wanted to do each day, and would allow me to do that unattended, as long as I promised to come back. There were a few times when something else was planned for my hour and they would flag me down and tell me to come back in, but that only happened three of four times, and was not a problem for anyone.

It has now been eight months since I left CNS with my daily two-mile walks around the building, but I have continued to do my walking, doing two or three miles three or four times each week. In fact, I reached a personal milestone this past week, my weight dropping below 200 pounds for the first time in about forty years. I intend to continue walking this much as long as I can for the rest of my life.

Taking controll of my weight

Since 2011 I have lost well over 100 pounds. No counting calories, no Nutrisystem, no WeightWatchers, no Dash Diet, TLC Diet, Mayo Clinic, Mediterranian, Flexitarian, Volumetrics, Jenny Craig, Biggest Loser, or Ornish. I lost weight – and am still losing it – by simply eating a lot less. Every day. Every meal. I still eat whatever I want (except for a few things like Oreos), I just don’t eat so much of it.

I must say that I am not saying this is the best way for anyone else to lose weight. It is simply the way I lose weight.

I was a very skinny child. My mother tells me of the years she had to read to me or tell me stories just to distract me so she could slip a spoonful of soup or potatoes or whatever into my mouth. In my first two years of grade school my lunch consisted of nothing more than a cup of soup and a cup of milk. When I got home each day and my mother asked what I’d had for lunch, I would say, “The same-old, same-old,” meaning soup and milk. A new grade school opened closer to my home when I entered the third grade. Fortunately, the nutritionists there would not allow me to have lunch that way, and started making me get other options, like meatloaf, vegetables and desserts. During the next eight years I grew from a skinny little kid to a chubby young boy. I can remember when I was about ten and had to move up from the “boy” sized bluejeans to the “chubby’s.”

I spent my high school and college years fighting my weight year after year and mostly putting on weight until I wrecked my motorcycle the summer I entered the senior year of college and broke my jaw, having it wired shut for eight weeks. A year later when I got married, I weighed about 185 lbs.

I kept my weight under 200 during the next five years until I got a job working in downtown Dallas at Lone Star Gas Company, where I was within a short walking distance of dozens of places to get lunch. For the next seventeen years I ate whatever I wanted every day, mostly getting pizza, hamburgers and Tex-Mex, every day for lunch. I would go out to lunch with friends, co-workers, or, mostly, by myself. By the mid-1990’s I had grown to well over 300 pounds. I stayed that way, ranging from 315 to 325 for another ten years, until my 19-year-old (at that time) son Evan, who weighed as much as I did, went on a simple diet of eating pretty much what he wanted, but in much more sensible portions. He lost 150 pounds over about four years, so  I started a similar program. By the time I went into the hospital on November 1, 2012 I was down to 290 – 35 lbs less than my maximum.

One of the brain injuries I sustained from being hit by a car was dysphagia (difficulty in swallowing). They put a gastric feeding tube (G-tube) in my belly through which I was fed completely for about six months. During that time I lost 65 lbs, after having lost 35 lbs in the five years before the accident, for a total of 100 lbs, since I had weighed a high of 325 lbs, just six years earlier. I would not recommend this method, living nearly a year from a gastric feeding tube, but it worked out well for me.

Since having the g-tube removed and returning to normal feeding, I have still lost another 20 pounds, and I hope to get down to 200 lbs well before the end of this year (2014). (Note: At the end of July 2014, I now weigh 199 lbs.)

The next few days: the prequel

Shortly after my previous post about how I became brain damaged, received the following response from Alyson Abel Mills, a co-worker of mine at Callier, who was walking across Inwood Road when I was hit by that car. Here is her memory of that morning:

“You and I were crossing the street from the bus stop. As always, we had pushed the button for the cross walk sign[al] and waited. We didn’t start crossing until the light changed. You and I were talking so we were walking close together. I know you were on my outside (right side) and think you were a few feet in front of me. The next thing I remember was you being hit by the car which came from behind us, turning left [northeast] onto Inwood from UTSW [Southwestern Medical Ave.].

“You bounced off of the car and landed on your side (right side?). Blood started coming from your head and your eyes were kind of flicking around, not focused. A number of people had stopped, were calling 911 and taking care of you. There was more than one nurse there [including Maria Reyna Paculba, who was driving the car] so I stepped away so they could help you.

“They had safely turned you to your back and were giving you CPR. Jim Latham [my boss] was on the other side of Inwood and safely crossed when he could. I got your cell phone and tried to call your wife. I think I first called your mom but eventually called your wife. The ambulance came and took you, and Jim got your things.

“People from Callier were outside and standing with me. I talked to the cops on the scene who, frankly, were complete jerks. I ended up calling the boss of one of them and complaining.

“That’s pretty much all I remember off the top of my head.”

At this point I am posting the text of the police report that was filed:

“Unit [Ms. Paculba] was turning from eastbound 5600 Southwestern Medical Dr. [sic] to northbound 1700 Inwood Rd. Driver of unit 1 stated that she was blinded by the sun as she turned and collided with the pedestrian [me] who was walking eastbound in the crosswalk. Witness Able was walking beside the pedestrian and witnessed the crash. Witness Fox, who was traveling northbound on Inwood in front of unit 1, stated she witnessed the crash through her rear view mirror.”