Lists

Toroweap Overlook at the Grand Canyon

Probably the worst injury I have from my brain injury is memory loss. I can still remember things about my childhood and most of the years after that, but I cannot remember much about the five or ten years before the accident. I cannot remember anything about the work that I did in my five years at Callier Center. I cannot remember names, places, US states, cities, TV or movie actors, countries, and lots of things like that.

Through my rehab I have been learning many ways to help me remember. For instance to remember the state of Illinois, where I lived when I worked at State Farm Insurance, I can remember the city of Chicago, a city I have visited several times in my life, both from work and from family vacations (see photo above – not Chicago, but from a vacation.). And when I think of Chicago I can easily remember its state, Illinois. So when I want to remember that state I just think of Chicago. Another tool I have been using are lists. Fortunately I have been doing that most of my life.

As a child I made lists of what teachers I had for each class each year, especially after I got to junior high and high school, where I had multiple teachers each day. Like most boys – and probably girls, too – I kept lists of the people I dated or wanted to date, including when we went out, where we went and of course a rating system for each girl. At first I did this in a printed calender, but eventually bought a “little black book” to keep records of that. I don’t have that list any longer because just before Jean and I were married, I destroyed my black book.

But I kept making lists. About our vacations and the places I traveled for work, all the cars I have owned, all the places I worked, my salaries, the places I have lived, the cell phones I have owned, my bank and credit card accounts, recipes, musical instruments and stereo equipment I have owned, hurricanes I have lived through – eight, many of the people I worked with, went to school with, and from my college fraternity. And for some of these lists I kept pretty good details. For instance my list of cars also has the make, model, year manufactured, dates purchased and sold, whether they were new or used, purchased or leased, paint colors, engine size, cylinders, horse power, even the EPA estimated rating when available, where I bought it and how I disposed of it – sold, traded in, or handed down to my son Evan or my brother-in-law Bill.

Early on I used paper and pencil to make these lists, but in the 1970’s when I started working with computers, I used those to keep my lists. In the 80’s I started using personal computers and in 2003 I got my first smartphone, which I have been using ever since.

All of that was long before my brain injury, so it was easy for me to continue doing that. While I was at the Centre for Neuro Skills (CNS), even though it took me six months before I could remember enough to use my phone, I kept lists of my therapists, neuro rehab specialists, roommates, even the meds I was taking. I also made lists of thing I needed to remember like US states, countries around the world that were in the news, all my bills, my medical accounts – Blue Cross, COBRA, Medicare, Social Security, Fidelity (the holder of my five retirement funds – Oncor, John Hancock, Sabre, Nielsen, Hewlett-Packard), unemployment, and of course the ACA Marketplace (obamacare)!

So as you can see I was prepared for brain damage long before it ever happened. There area still may things I have trouble remembering, but now I have plenty of resources I created throughout my life to aid in my recovery.

My first attempt at writing

Kimberly, my reading therapist , is now pregnant with her first child!

First things first: Evan and Mirjam found out last Monday that they will be having a GIRL next May!

When I woke up at Zale Lipshy, one of the first things I discovered about my condition was that I could not read. I could not even recognize the written alphabet. Even now, more than two years later, reading is difficult for me. I confuse many letters, like (P, Q and R), which slows my reading down to a crawl. About seven or eight months after my brain injury, Brian White, my CNS Counselor, asked if I had tried to write anything. He then sat me down at his computer and we found that I could write almost as well as before the accident. He told me that two different areas of the brain control our abilities to read and write, and that it appeared that the part that handled my writing must not have been damaged – even after writing something, I still could not read it! Soon after we discovered that I could still write, Alyce in Occupational Therapy had me sit at one of their computers and write about my injury and recover to that point. This is what I wrote, about a year and a half ago (nothing has been corrected):

“November 1, 2012 – Heading to work as I had for nearly five years, I arrived via DART bus at 8:00am. I walked across Inwood Road toward my office at Callier Center, a part of the University of Texas at Dallas.

“As I crossed the street I was struck by a car turning left from Arlington Park Drive onto Inwood Road. Apparently the sun, rising on my left, blinded her such that she struck me on the hood and front window of her car. She immediately stopped, called for an ambulance, and perceiving that I was not breathing, began performing CPR on me.

“I remember nothing of this accident, or the first month after that. I am told that my brain was damaged and that swelling had begun. Dr Rickart at Parkland Hospital performed several hours of surgery on me to relieve the swelling occurring to my head. I was in a coma for a couple of weeks after that surgery. I did not come to until nearly a month after the accident, and even then I was in-and-out of consciousness for the next month (I had been moved nearby to Zale Lipshy University Hospital). While I have very little memory of that time, I do remember over a dozen memories that I had. Some of those memories reflected some of what was happening to me in the “real world,” which I can remember little or none of. For example, I am told that I had had a tracheotomy tube inserted into my throat, which I continued to pull out regularly so that they strapped me to my bed to prevent that. I remember none of that process but I did have a dream where I was strapped to a bed and no one would help me get loose. Similarly, I had other dreams that could later be traced to actual occurrences that I could later identify from things I know or found out about.

“Needing another place to get rehabilitated, my dear wife Jean researched and selected for me a quality rehab center called Centre for Neuro Skills in Irving to continue my recovery. So after two months at Parkland Hospital, and the adjacent Zale Lipshy University Hospital, I was transferred on Wednesday January 2, 2013 to CNS, living in their apartments and attending rehabilitation therapy at their nearby clinic.

“At first I decided I would rather just go home. I had no understanding that my brain damages were severe and quite debilitating; I could not walk (I was in a wheelchair for several months), unable to read, unable to swallow any food without choking (I had a g-tube for feeding), nor could I remember very much (especially names, numbers, history, places and countries). Then during the first few weeks at CNS, I could not get food down – I regurgitated everything that I ate.

“That ended about a week later, and I had a couple of successes in my recovery. The first advance was getting away from my dependence on the wheelchair. After I got over the digestive problems, Sunil told me to get out of my wheelchair and walk. I told him that I could not do that. I could not stand up without it. He would have none of that crap, and insisted that I leave my chair. It took me about another three weeks, but I finally got to the point where I could get into the van that took me back to the apartments without having to use the wheelchair lift at the back of the van. This was a major accomplishment for me. I had been in that wheelchair for nearly four months since I was taken to the hospital.

“How I learned to love the apartments. The first week I was in the apartments, an NRS (probably Kim) wanted to find out what kinds of activities and programs in which I might be interested. Every time she described something like “sports,” “movies,” or “games” I replied “not interested.” All I wanted to do when I returned to that apartment after class was to go to bed and sleep.

“Only after I started to get my brain working a little better, was I able to know some of the people at the apartments. NRS employees, supervisors, transportation drivers, and other patients – I came to realize that this CNS place might be useful.

“I must especially mention the people in PT who provided instruction and support for an anti-exercise master like me. When I first came to CNS, I detested doing any exercise at all. They helped me to understand that (combined with the medical staff) they represented the equals of any fitness resource in the nation.

“I must mention a few of the people at the apartments whom I got to know, an who helped me survive the experience of brain damage. I got to know people like Tiffany, Bernadette, and especially Nicole (and dozens more). By keeping me company and sharing their lives with me, I came to again find that life was very much worth living. Today, I can now read and eat and know that I have survived from traumatic brain damage. I became so excited about learning to be around these people and how they could be people that I loved and be loved by, I now had a reason to get better.

“I must also mention the other people at CNS who helped me beyond belief – educators Sunil, Vanessa, Whitney (PT), Alyce, Carla, Matt (OT), Debbie, Michelle, Veronica (Speech), Kimberly, Amy, Maribel (Education), Brian (Counseling), Brandy (Case Management), Dr Johnson, Selam, Ashley (nursing), April, Bella, Carl, Eduardo and Vanessa (transportation drivers), and many others I don’t have room to list. I was at CNS just under twelve months, and by then I was able to walk up to two miles during Physical Therapy, read fairly well (it can take years for the brain to recover from such injuries), and even eat many types of food. I would not have gotten this far without the assistance of all the friends I made at CNS. I now plan to retire to helping others with such brain injuries and work to get more people aware of the lack of notoriety drawn by such highly debilitating injuries.”

Nicole

Words I needed to remember

After I had been attending rehab at the Centre for Neuro Skills for a few months, my counselor Brain asked me this question: “Patrick, thinking about your entire life, what was your best day?” Without skipping a beat I replied, “Today. Today is my best day.”

That beautifully captured my heightened awareness, my excitement and anticipation, that comes with working for a great purpose, the way that such reformation brings spice, meaning and joy to life. Through my recovery process, I have met so many wonderful people and made so many lifelong friends, each new day is always my best day.

On Wednesday January 2, 2013, I was loaded into a van on my wheelchair, and moved to CNS. The first person I met at the apartments was Nicole Douglas-Barclay. She was my neuro rehabilitation specialist. It would be many months before I knew what that was, and several months before I could even remember “NRS.” Since my condition kept me from remembering most names I heard, over the next few months I often had to ask my wife Jean what Nicole’s name was. I could not remember that.

Jean soon became aware during my first couple of weeks at the CNS apartments how important Nicole was to my recovery. So much so that when CNS decided to move me into a different apartment there, Jean asked the powers-that-be at CNS if Nicole could also be moved to be my NRS. That change of location and getting to take Nicole with me at each move continued twice again, allowing me to continue with the excellent care and development that Nicole provided me.

No matter to which apartment they moved me, Nicole and I were together. Life was good for both of us. It is good to be in rehabilitation — when learning again how to read and how to remember names and places, recovering from brain damage nothing is better. Food tastes better. Water is more brilliant. Girls are more beautiful. The sky is bluer. For the brain damaged in recovery. My life was the best. I was the happiest man alive.

What did she do for me? Everything. From the first day she would ask me a series of orientation questions, to help rebuild my memory:

What is your name?
What day of the week is it?
What is today’s date?
What month is it?
What year is it?
What is the name of the rehab building you are in?
What is my name?
What type of injury caused you to be here?
What city are you in?
What state are you in?
What country are you in?
What city are you from?
What state are you from?
What season of the year is it?
What is the weather like today?
Who is the president of the U.S.?
How old are you?
Where were you before you came to see me?
What do you do when we have a fire alarm?
What is the address for the apartment and clinic?

At first I knew the answers to none of these questions. By reviewing them each and every day over the months, my brain began to be restored, one answer at a time.

Nicole also spent time helping me to walk. After just a month I was out of my wheelchair and able to walk on my own. Each evening she would have me walk with her around the apartment complex. It was not far, about two-tenths of a mile, but before long I could walk around it twice, then three and eventually five times – a full mile each evening.

She helped me with my reading. Kimberly, my English teacher, gave me a set of flash-cards of short, basic words to read in order to heal my memory and reading ability (see the photo at the top). Nicole spent hours with me each evening showing me all these words so I could remember how to read.

Nicole, standing behind me at the wedding

Nicole went with me to Evan and Mirjam’s wedding. CNS provided a car and driver (Nicole, who had grown up in Jamaica, had no Texas drivers license) to take us to Garland for the wedding and back. CNS also had various events for the patients, such as going to movies, shopping and local parks. Along with some other patients, Nicole would accompany me on these outings. We went to several movies – the only one that I can remember was 42, about Jackie Robinson, although there were several other movies. We would go to local parks in Irving just to walk around and get to know the other patients and NRS’s. I was strong enough that I could help push the other patient’s wheelchairs around the parks. My shopping trips were limited to Target – because I could only eat through my gastrostomy tube (G-tube) Nicole never got to take me to do any grocery shopping.

What is probably Jean’s favorite task that Nicole taught me was to do my own laundry!

Sadly, CNS has a regulation against NRS’s providing patients any of their contact information, so I have not been able to communicate with her in over a year. Please check out my page about her, and contact me if you know how I can reach her,

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!

 

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.