Email

 

Palm Pre 3

Last night I went through my email history from the first year after my brain injury which happened on November 1, 2012. My last email was October 31, to my son Evan. For more than five months I could not use my smartphone to read or send messages, or do anything else with it. After I awoke from the coma in late December when I was at Zale Lipshy, I wanted to be able to call Jean. She wrote down her telephone number for me, but that did not help much. I tried to use the desk phone in my hospital room but did not know that I also needed to dial “nine” first before dialing the number that Jean had given me. In this post you will see how bad my grammar and spelling were at that time, and a little bit about how it started to improve over the first few months.

The first email from my smartphone was from Jean to a friend of mine in Iowa dated April 8, 2013, titled “Out of touch,” because it had been more than six months since I had written to her. I am including this one because it gives readers of this blog some background:

“Kayoko, I am Jean, Patrick Spreng’s wife. He asked me to send you a message to ask how you & your family are. He always shows me the pictures of your family on your Christmas card! The reason you haven’t heard from Patrick lately is that on Nov. 1st as he was walking to his office, he was hit by a car & had a traumatic brain injury. He was hospitalized for 2 months & now is in a residential treatment center about a half hour drive from his home. He is doing well but is frequently frustrated because he must re-learn how to read & that is going slowly so he asked me to write this to you. Hope you & your family are doing well. God bless you! Jean”

The first email that I sent was to my son Evan on April 11, 2013, titled “Pretty bad,” asking for help with using my phone: “I need more help sometime.”

Jean had come by my apartment on the 10th and used my shower to clean up. I could not find what she had done with the soap, so I sent her this email: “What tide you do with me path soap for my mode? I can’t find it.”

On the 13th I wrote a message to Matthew Goodman, the music leader of our church in Tulsa, titled “Me, again.” “I was will by a car last year end ave spent six months attempting at CNS. I am trying relearn to read and right. I cont know it I’ll ever be able to work again. I don’t know if I’ll ever be able to play again.”

Again that same day I wrote this to Tom Leonardis, President of Whoopi Goldberg’s company, Whoop, Inc. and Executive Producer of One Ho Productions, her production company, titled “Recovering acain:” “I was git be  a car last last October, recovering from being hit  by a car on the street. I cannot writ or read or are a computer. I am moderating new Dallas.” And on April 28 I again wrote Tom, titled “Happened again!” “I have been in treatment for nearly six months after getting hit by a car while calling across the street. I can’t read or right or eat (damaged swallowing), but  I can still walk. I am not wishing for sum  support and should be out of re-hab by the end of this year.”

For my websites I had used the URL acmewebpages.com since 1998 or so. But the GoDaddy account for that expired near the end of January 2013, so none of my websites existed after that. But I was still getting billed each month from my web host, EZ Web Hosting. So my next email was sent to them on May 2, 2013, titled “Please call me at 972-333-4508” and it just said “Please call me.” I cancelled my account and they were willing to cancel the billing since January.

On June 8 Matthew replied to my email from April 13th, titled “Following up” “Diann in the front office forwarded your phone message to me, so I wanted to follow up and see how things are going. John Tyson had seen on facebook that you had an injury late last year, so I’m hopeful that you are recovering. I wonder how you, Jean and Evan are doing these days. Things here seem much the same, though probably vastly different than when you were here, as we tend not to notice incremental change. Our 3 boys (yes, we now have 3!) are 12, 8 and 3 years old, so Kelly and I stay pretty busy, but it’s all good.      “Anyhow, I’ll hope to hear back from you when you have a moment to respond.

So I sent a reply on the 23rd, titled “Following up” “Thinks  aren’t actually going to well for me. While walking across Inwood Road to work, I was hit by a  car. I have been in the hospital and in recovery  since last November 1st with brain damage. I am unable to read or write or even eat  normal food. Recovery is painfully slow-I may not be able to read for months or even years! Life ahs become a struggle, but I may go home next month, mainly because I have little money laft. Machines are helping me wright this, but I cannot re-read it.”

I don’t know why but on June 25 I wrote a third email to Tom Leonardis: “Another dire straight…On November 1st, while walking to work across the street in Dallas, I was hit by a car. A couple of days later I needed  brain surgery and was in the hospital for over a month. I have now been in two area rehab facilities. I cannot read or wright, nor can I rat regular food. It could be months before I can learn to read. I am doing okay and will soon get  to go home. I don’t need any help, I just wanted to keep y’all updated.”

I wrote this on July 2 to my UTD Callier coworker Dave Simcoe: “It looks like I may get to go home next week or so. My English teacher says I may now be reading at a 2nd grade level! I may be at a 6th grade level by the end of this year. I will still be going to school each day at CNS every day. I don’t know when I’ll be able to  drive again – I haven’t driven since last October. It’s good to hear from you.”

By June I had begun making a list of the people I was getting to know and work with at the Centre for Neuro Skills (CNS). Then on July 17 I sent a copy of the list I was making to myself, probably because I did not know how to store that list in my phone:

CNS People, clinic & apartments:
Debby Peters – Eating
Kimberley Webb – Education
Brandy Chancellor-Reid, Conroe
Brian White – conference
—–
NRS PM – Nicole Louglas-Barclay
(Jamaica)
NRS PM – Kem – Bo
NRS PM – Shantell – John
NRS PM – Adriana (Mexico)
NRS AM – Lupe (Irving) John
NRS AM – Sandra (Corpus) John
NRS AM – Ashleh – next door
NRS AM – LaResha – next door
NRS AM – Sheree (Japan)
NRS AM – Wybell (Philippines)
NRS AM – Amanda (Texas BClar)
NRS AM – Bernadette (Vegas)
—–
Tiffany – housing
Catherine – PM Supervisor
Ashley – receptionist
April – transportation
Carl – transportation
Veronica – transportation

Nursing:
Dr Johnson
Dr Karen Kowalski
Selam – Nurse
Sharon – new Nurse (7/15)
Cindy – office meds
Juliuse – Nursing receptionist
—–
Ashley – housing meds

Students:
Me, Garland, OuPa, 7/19
Ryan, Austin, California
Bo, Texas
Charlie, Wisconsin
Bill Wilson, Rockwall, OuPa, 5/??
John Sims, South Texas
Ashton Cerka, OuPa, 6/28
Ken Frisbie, Dallas
David E Deason, Jill; 4353 W Lawther, OuPa, 7/12

PT: Health and exervise
Whitney
Vanessa
Melina (Venezuela)

By this time I was pretty well functional with my cellphone and was able to clearly communicate with most everyone, so most of my emails from this point sound quite mundane and ordinary. Thanks for reading.

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.

Brian White

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Brian was my counselor at the Centre for Neuro Skills and he helped me immensely. Like all the other therapists and teachers at CNS, he spent a lot of time when I first arrived there testing me to determine how much I had suffered from my brain damage. He gave me a raft of tests to measure my thinking abilities, but like others at that time he soon discovered that I could not read. I also could not remember very much and so soon realized that I could not answer many of the questions he had for me. That was okay because he was not measuring what I knew, as they do when you are in school, but rather how much I had forgotten.

Brian was a wise and gentle man who, like me, was a computer geek, a libertarian who understood that drugs should be legalized, and that there probably was no god. What we found out through his testing was that I could not remember any of the companies for whom I had worked, the states where I had lived, almost nothing about the countries of the world, and not even any of the streets or towns around Dallas where I lived. Geographically and historically my mind was a blank slate.

We would meet each day in his office and talk about whatever he and I wanted to discuss. We spent many hours trying to recreate my work history over the past forty years. I could only remember two of the six US states in which I have lived. We also spent a lot of time working on my insurance needs and my plans for Jean’s and my retirement. He helped me complete the forms we needed to submit in order to apply for my Social Security Disability Income, which always takes a lot of time – in fact, it was more than a year from the time Brian and I started working on those forms that my SSDI was approved and I began receiving income. We also worked on the forms necessary for my Long Term Disability income, which was what paid our bills (but only 60% of my former salary) after the University of Texas at Dallas had fired me nine months after my injury. That was to have been expected, because even now, more than two years later, I still cannot remember anything about the software I was working on at Callier Center. It can take years for someone to recover from TBI, and I knew the university could not wait that long.

Brian also researched the new Affordable Care Act and even filled out the online forms in the Marketplace web site, so together we suffered through the agonizing problems through the early days of that process. After leaving UTD, I had signed up for COBRA – the Consolidated Omnibus Budget Reconciliation Act of 1985, which increased our medical insurance from about $200 each month to over $1,000. With Brian doing most of the Obamacare application, our health insurance was less than half of what we were paying through COBRA (see this post for complete financial history).

Brian also got me hooked on TED, which began in 1984 as a conference where Technology, Entertainment and Design converged, and today covers almost all topics — from science to business to global issues — in more than 100 languages. Even now I spend several hours each week watching fascinating contributions through TED talks and events.

Thanks for reading my blogs. Please feel free to leave a comment here or use my CONTACT ME page to send me email.

More about Debbie

After moving from Zale Lipshy to the Centre for Neuro Skills, I started my Traumatic Brain Injury rehabilitation with daily classes in physical therapy, occupational therapy, counseling, educational therapy and speech therapy. Debbie, my speech therapist, was also trained in dysphagia recovery, and, as I learned last week, she quickly determined that I had a very severe problem, not only with that condition, but also a version called “silent aspiration.” I had no awareness of my dysphagia. If my dysphagia went untreated, I would put me at a high risk of pulmonary aspiration and even pneumonia from food and liquids going the wrong way into my lungs, because I do not cough or show outward signs of aspirating.

First Debbie limited my eating to using the Gastrostomy Tube (G-Tube), which feeds me through a tube inserted into my abdomen so I cannot swallow at all. Then she began teaching me a number of swallowing maneuvers which are supposed to help keep your trachea closed while swallowing. These include the chin-tuck, where you lower your head until your chin presses onto your chest; effortful swallow; supraglottal swallow, super-glottal swallow; and the Mandelsohn maneuver. There is also a long list of foods and drinks I cannot have, with a much smaller list of those I can have. Along with the swallowing maneuvers, Debbie would use a device (pictured above on my head) that gave my chin electrical shocks each minute during our hourly sessions.

After a couple of months she began fixing me small meals each day consisting only of different flavors of yogurt. After several months of only being fed through my g-tube, yogurt was absolutely wonderful.

Five or six times during the year I was at CNS – about once every two months – I was taken to a large van outside in the parking lot to have a “swallowing test” where I would sit between racks of special equipment that could film what was happening inside my throat whenever I swallowed anything. The people in the van would give me a series of different foods, like puddings or thickened liquids, to see when I swallowed down my trachea, and how much. Sometimes my swallowing would be improved with more going down my esophagus rather than into my lungs. In early July the test was so good that it was decided that I could get completely off the g-tube and begin eating “real” food orally. But by early November when I had my final swallowing test, there had actually been little change since my first test in January.

When I left CNS in November of 2013, Debbie put me on a diet called “mechanical soft.” On that limited diet I was able to eat yogart, cottage cheese, pudding, oatmeal, grits, mashed potatoes, chopped spaghetti, mac and cheese, blended cream soups, applesauce, mashed bananas, well-cooked chopped vegetables, meats that had been finely ground or chopped with gravey, eggs (scrambled or poached) and foods that were pureed. I could not have cold cereal, no bread, no rice, no other soups, no other fruits unless blended in a yogurt-based smoothie, no raw vegetables, no salads, no cookies or cakes, no other meats, and especially no seeds, nuts, chips coconut or popcorn. Much to Debbie’s sadness I told her that I could not live with those restrictions. And the reason was not because I had to have steaks, hamburgers or desserts; it was because I had to have sandwiches or salads. I cannot live with neither of those in my diet. Debbie told me that if I did not conform to these limitations, within a very short time I would get pneumonia and die. I told her that a year earlier I HAD died, on the Inwood Road, lying there with no heartbeat and not breathing, and that I would die eating whatever I wanted rather than live with these restrictions.

Now more than a year after my last swallowing test, I am still pretty much happily eating whatever I want, and still surviving. What I learned then was that there is no cure for dysphagia. It will not go away, not even with all the exercises that Debbie taught me, and there is no surgery to fix it. While there are a number of other causes, mine is a result of brain damage. All I have is a lifetime of dealing with it. I do use the chin tuck whenever I eat, and only eat sitting fully upright. And yes, I will probably die from pneumonia in a couple of years, but I will be quite happy with whatever happens for the rest of my life. I love you Debbie and thanks for all that you did for me, but I want to spend the rest of my days – however short that may be – happily eating everything I love.

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.

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!

 

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.