Let's Talk - Sharing Our Stories Helps Us All

I am scheduled for surgery tomorrow to replace the skull piece that was removed about six months ago.  As I have been preparing for surgery, I have been thinking about why I started my blog.  According to  the CDC, over 1.7 million people sustain a Traumatic Brain Injury each year. That is an amazing number when compared to cancer, HIV/AIDs and spinal cord injuries.  With so many people affected by TBI, I feel very strongly that it is important for victims, families, caretakers and friends to share their stories.  Like so many other illnesses, no one expects to have it happen to them and when it does the ability to access information and resources related to TBI is invaluable.  

If you are reading this blog, and have been through similar challenges it would be great if you would comment and share your story.  Sharing your personal experiences is very helpful to me and others dealing with TBI issues.  It is important to know that you are not alone. 

Wishing everyone a great week!

  

Next Step in my Journey

In the coming week, I will be undergoing my fourth brain surgery in three years. My surgery involves putting in a synthetic skull piece to replace the bone that was removed last fall. While I am not looking forward to the upcoming surgery, I am focusing on the positive. 

This past weekend we had a day-long trip that involved about six hours of driving.  Between the bouncing around during the drive and walking around I was quickly reminded of why I need to go forward with the surgery. Walking around with part of your skull missing isn’t safe and it has most definitely limited my ability to be physically active. 

I had really wanted to participate in the recent Ride2Recovery Texas Challenge but wasn’t able to because of my upcoming surgery. I missed being part of the ride but was happy to be able to keep up with what was happening through Facebook. The posts definitely inspired me. My goal is to get back to biking and running within a few months of the surgery.

I am continually reminded that recovery from a brain injury is a journey that requires a lot of support. I am very fortunate to have an unbelievable family and a great network of friends. 

If you are reading this blog, please don’t hesitate to share your story or thoughts.  They are helpful to me and other TBI survivors, caretakers and family members.

Have a great week!

For more information on Ride 2 Recovery visit their website at https://ride2recovery.com/.

Upcoming Challenges

Recently, I have been thinking a lot about my future. My retirement from the fire service gave me an empty feeling and not long after moving to Texas, I was considering what my next job would be.    

Following the accident, my professional goals changed a lot. Prior to my accident, I honestly thought that I was ready to retire. I realized a few months after my accident how much my career meant to me. I was fortunate to be asked to join Project Rebirth as the First Responder Outreach Coordinator. Through Project Rebirth I have been able to assist others who are facing very difficult situations in their personal lives. One of the most rewarding things that I have done is to represent Project Rebirth during Ride2Recovery events. Not only have I made many new friends, but I have truly been inspired by so many who are facing significant challenges. I have come to realize that helping others is part of my DNA.

Even though my professional goals have been placed on hold over the last three years due my injury, my focus now is on how I can help others. After my upcoming surgery my goal is be even more involved with Project Rebirth and identify more ways that I can assist other TBI patients. 

I'll leave you with one of my favorite quotes:

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

 -Albert Einstein

For more information on Project Rebirth, visit their website: http://www.projectrebirth.org/

Finishing My Education After My TBI

I began working on my bachelors degree in 2009 while still with Arlington County Fire Department.  I wasn’t sure that having my degree after I retired would have a substantial impact on any future employment but I personally felt it was an important thing to do.  About two months before I retired from Arlington Fire Department I had reached the point where I had only four classes to go and I was actually planning to address some of those classes through CLEP tests.  

Fast forward to March 2011 and my fall and suddenly my education, along with many other things, got put on hold.  About 7 months after my injury I decided that I wanted to finish my degree and signed up for a class.  Restarting school was one of the most challenging and difficult things that I have had to deal with since my injury but it is also one of the best decisions I made.  

I came close to dropping my first class because I found it very difficult to complete the reading and writing required to keep up with the class.  At the beginning of the class it was very hard to read even a few sentences.  I wasn’t able to focus my eyes while reading and had a hard time concentrating on what I was reading.  I was surprised when after a few weeks my ability to focus and concentrate on what I was reading got easier.  I found that the challenge I encountered advanced my cognitive level, probably much quicker than would have happened if I wasn’t taking the class.  My improvement was very important to me because after my accident I wasn’t sure what the future would hold.   

It has taken me almost two and a half years to complete my last four classes.  My progress was slowed down by a number of infections and surgeries.  My last surgery was in November.  I had to have the bone that had been replaced in my skull removed to address an ongoing MRSA infection.  I started my last class about two months after my surgery and got my final grade two days ago!  I feel like such a weight has been lifted off me and I am glad that I was able to complete my degree.

Today marks the third anniversary of my fall and the beginning of a new life that included a TBI.  In the next month, I will face my next challenge, the surgery to replace the skull piece that is missing.  I am hopeful that this is my last surgery. I am quite intimidated by my upcoming brain surgery, but I am hoping for a positive outcome. Accepting challenges is never easy and a TBI often makes it more difficult. 

While I have another surgery to deal with I am thankful for my family, friends and the fact that I have recovered to the point that I am able to write this blog.  I am looking forward to my family vacation, working with Project Rebirth, cycling with R2R and Cadence Cyclery, more blogging, fishing and helping others dealing with TBI.

Have a great weekend!  Don’t forget that March is Brain Injury Awareness Month. Help spread the word about TBI.  Please share your thoughts on this post. I always appreciate hearing from others about how they are dealing with their TBI. 

An Unexpected Setback

During the first week of November I started having bad headaches behind my eyes and Motrin did nothing to control them.  My wife and I decided to see my neurologist to get his thoughts on what might be causing the headaches.  We also wanted him to check out the area of my incision that had been the source of several infections because it seemed to be changing.  After the neurologist scheduled an MRI we decided to go visit the Infectious Disease doctor and have him take a look at the incision site to see if he had any concerns.  The Infectious Disease doctor had us get my blood work checked prior to our appointment.  We visited all of my doctors and had my MRI in the same week.  All of the information was shared with my Neurosurgeon and her team.  She received the results late Friday and was concerned enough by my blood work that she had the Neuro Nurses call us first thing Monday.

My wife answered the call from the Neuro Nurse on Monday morning.  After the call she came in to see me with a very concerned look on her face.  She went over her conversation with the Neuro Nurse, which involved two options.  Option one included re-starting my prescription to heavy antibiotics and most likely staying on them for the rest of my life. Option two involved the removal of the section of my skull that had been surgically removed immediately after my injury on March 7, 2011.  

Even though I hated the idea of having surgery again to remove the skull flap, the decision took me about one second. Given the fact that I continued to have infections it seemed that my bone, which had been replaced after my accident, was the source of the multiple infections that I was experiencing.

The week was a whirlwind of doctor visits.  We visited the Neurosurgeon on Wednesday, did pre-op labs on Thursday and I had surgery on Friday morning.  I am not sure we processed exactly what happened because it was so unexpected and seemed to happen so quickly.  It didn’t seem to make sense as I wasn’t feeling “sick” and 2 ½ months before I rode my bike from Boston to Philadelphia with no problems.

I was in the hospital for one week.  The stay was longer than usual but the doctors had to ensure that they had the bacteria identified so they could treat it with the correct IV antibiotic when I went home.  Prior to my surgery the infections had appeared to be limited to the area near my scalp, however, during the surgery an additional infection was found inside my skull. Considering the location of the second infection, the decision to have this surgery might have saved my life.

I am on IV antibiotics for six weeks.  Then the doctors will monitor to make sure the infection is gone.  The original bone flap will be replaced with an acrylic prosthetic in 3 - 6 months if all goes well.

I have to say this has been one of the most difficult times sense my accident.  I truly felt that I had overcome the infections and was moving forward with my life.  I can only speak for myself but I have to say that the greatest challenge of my TBI recovery is that it seems to be one step forward and ten steps back. So for now my bikes are officially on “Moth Balls” until the infection is gone and my skull is rebuilt. 

If you are reading this blog, and have been through similar challenges I would appreciate your posts on how you addressed the challenge. Sharing your personal experience would be very helpful for me and others who are dealing with TBI issues.

Happy Holidays to all!

Fall 2013 Challenges

This Fall was full of challenges, both physical and academic.  Most of the experiences were meaningful and it was some of the best months since my TBI occurred almost two and a half years ago.

In early September I participated in Ride 2 Recovery’s Minuteman Ride.  The Ride was from Boston, MA, to Philadelphia, PA, and covered about 450 miles.  Ride 2 Recovery (https://ride2recovery.com/) is an organization helping our Nation’s Service members recover through cycling.  I participated in the Ride on behalf of Project Rebirth.  During the seven day ride I made great friends and now I feel like part of the R2R family.  Thanks to Cadence Cyclery in McKinney, TX, I was able to prepare for the Minuteman Ride and through their weekly rides I was able to rebuild my cycling foundation.  

For me, the most meaningful part of the Minuteman Ride involved spending September 11th with a group of people who accepted the challenge to protect the United States after one of the world’s most significant acts of terrorism.  Many of the soldiers on this ride joined the military after 9/11, and all of them made significant sacrifices.  For many of us who responded to 9/11 events, it can be pretty rough, but being with this group changed my outlook on this day - probably forever!  I repeated “Thank You” many times during this ride and I meant every word.  I have included some photos from the Minuteman Ride below.

Fall also brought an academic challenge as I worked on completing my second to last class to complete my Bachelors Degree, and it was the third class since my injury.  The class was a math course, something I had been avoiding for many years.  After my TBI, my academic advisor recommended that I notify instructors at the beginning of each class about my medical history in case any issues occurred.  

I notified my math instructor during the first week of the class with a one sentence explanation.  The response I received back was “So I guess you expect me to accept late assignments.”  Because this response was so insensitive and unprofessional, it took me several days to shake the negative feelings that this exchange created.  It was a reminder that not everyone understands/appreciates the challenges that face those with brain injuries.  I was able to move on and successfully complete the class.   

While my injury has slowed me down I am glad that I am able to continue with my education and my cycling. 

Please don’t hesitate posting your suggestions and thoughts.  They are helpful to me and other TBI survivors, caretakers and family members.

Wishing all a Happy Holiday Season!

Back on the Bike

One of the most important parts of my life prior to my accident involved physical activity.  I loved cycling, running, swimming and martial arts. Seven months before my fall I completed in the SavageMan Triathlon which is now considered one of the most challenging triathlons in the world.  Eighteen months before the SavageMan race my son and I earned our black belts at the Arlington, Virginia, Jhoon Rhee Tae Kwon Do.  It took us five years of training to get our black belts.  I regularly competed in century rides and occasionally in 24-hour bike races. My job with the Fire Department also required that I be very physically fit. Physical fitness wasn’t just a part of my life in many ways it defined who I was.   On the day before I fell I ran 11 miles.  At the time of my accident I was around 180 pounds and my body fat level was less than 10%.   My run is the last thing I remember until about six weeks after my accident.  

By the time I was aware enough to realize that I had been injured, I had lost almost 50 pounds and my weight had dropped to about 130 pounds.  For the first month and a half I was pretty much bed ridden and being fed through a tube.  Although I really don’t remember my early physical rehab, I am very thankful that my doctors started it as soon as my health had stabilized.  In the beginning I couldn’t sit up on my own or stand.  My physical therapists had to get me up and out of bed.  Slowly I learned to balance myself enough that the therapists could hold me up and “walk” me down the hallways of the hospital.  These short walks seemed like miles at first.  Sitting up in a wheelchair required belts around my waist and shoulders.

I remember being bothered by my inability to move around by myself and frustrated by how little I could do.   It was demoralizing to have to rely on other people to get around.  One of my friends that visited me at the hospital told me two years later that I reminded him of a very frail and ill seventy-year old man; at the time of his visit I was forty eight.

My physical rehab continued when I went home and started at Pate Rehab as an outpatient.  Every morning I had to be walked out to the van when it picked me up.  My family would go on walks with me around our neighborhood and I remember how challenging it was to walk down the street let alone down to the nearby pond.   Any physical activity required a lot of rest to catch up afterwards.  I seemed to sleep more than anything. This lasted for close to a year and I felt like my progress was moving very slowly. 

One of the greatest challenges I have faced during my recovery has been accepting the fact that in order to recover in a positive way I couldn’t push myself in the same way that I had before I was injured.  While any amount of physical activity can assist those dealing with a TBI, if you push too hard you end up in a one step forward two-step back mode.  My family and doctors have played an important role in helping me manage my physical recovery.  I realize that I have frustrated them because I have not always heeded their advice or warnings about my activities.  

As an example, last Spring I had started riding again and was going to do part of the R2R group ride that started in San Antonio, Texas.  While I was training, I didn’t really use my water bottle while I was riding.  During the R2R ride I went to drink from the bottle and ending up choking.  It is really hard to ride your bike when you are choking, pedaling and laughing.  I also did the entire ride from San Antonio to San Marcos because I got caught up in the spirit of the ride. However, at the time I was not really prepared to do that long of a ride and ended up not feeling well and recovering for the next several days. 

Almost 2 1/2 years after my accident being physically fit has once again become a high priority for me. I believe that engaging in physical activity has made a significant difference in my mental and physical recovery.  I realize how fortunate I am that I can even have this as a priority and actually at times this had been a source of guilt.  I hope that I am finally beginning to make smarter decisions about what I do and when.  For a while I was determined to return to martial arts but realize that while it is something that I enjoy the risk of my being reinjured is fairly high.  I realize that I also run a risk with my cycling and I am working to cycle as safely as possible.

My message to others recovering from a TBI is to be physically active to the extent that you can and that your doctor approves.  Physical activity helps with improved blood flow and the recovery of the brain and your body.  Just be smart about whatever you do.  Once you have suffered a TBI your chances for suffering another injury increase so being thoughtful about what you do is vital. 

Although recovering from a TBI takes a long period of time and makes changes in our lives, please remember how blessed we are to be survivors.  Accepting the changes we face can actually open new doors for us as we move forward.  For me this period of time represents a personal rebirth.  I would like to mention one of my most challenging days when I returned to cycling which involved drinking from a water bottle. 

For those of you who are involved in cycling or other sports, I wanted to share a new helmet system.  While writing this blog post I discovered the new brain protective MIPS helmet systems used by many sports http://mipshelmet.com/find-a-helmet.  I purchased the Scott Lin helmet at Cadence Cyclery http://www.cadencecyclery.com/ in McKinney, Texas.  In July I started doing group rides with Cadence and I am really enjoying them.

I hope that this blog is helpful to others recovering from a TBI.  I would love to hear from others what has worked for them as they travel the path of recovery. 

As I was getting ready to post this, I saw an article on the benefits of exercise to our brain and thought would share it http://www.dailygood.org/pdf/dg.php?sid=440.

The Importance of Caregivers in TBI Recovery

I recently read Rosemary Rawlins (@rorawlins) articles on the benefits provided by caregivers to those recovering from TBI.  I wanted to share her article because as a caregiver for my husband, I completely agree with Rosemary about the importance of caregivers to those recovering from a TBI.   I went to the hospital every day while Bob was there.  The doctors and nurses who cared for Bob were all very good, but the reality is he was one of the many patients that they were responsible for.  While he received a great deal of attention in CICU, the further away we got from CICU, the less one on one attention he received.   It was not that he necessarily needed less attention but the doctors and nurses outside of CICU had more patients to take care of.  While he was in the hospital and especially before he regained his memory I advocated for him and for the treatments he was receiving.  One of my most important roles since Bob's accident has been ensuring that he receives the best medical care possible to help with his recovery.  In addition, I believe that having me and other family members around, even if he didn’t recognize us, was key to helping Bob move forward. I was fortunate to have plenty of people taking care of the kids and me.   It would have been much more difficult to focus on helping Bob without the support system I had and I am forever grateful for the friends and family who kept us going.   Being a caregiver is not easy and it can be hard to see the positive impact that you are having but as Rosemary points out in her article the role of a caregiver is vital in terms of achieving the best outcome possible for those recovering from a TBI.  Here is the link to Rosemary’s article: http://www.brainline.org/content/2013/08/five-ways-caregivers-directly-impact-tbi-outcome.html

Have a great week. Lesli

Re-Entry

After my injury I was in a coma for almost three weeks some of it medically induced and some of it not.  Once I regained consciousness I was moved out of CICU to the Neurology wing of the hospital. I didn’t recognize anyone when I awoke. The right side of my body and face was fully paralyzed and I was unable to speak.  I had a plethora of devices connected to me from my calves to the top of my head.

I don’t remember exactly when I started to reconnect with the world but the day it started, I felt like I was wondering out of a cloud.  All of this started with a dream involving a large crowd around me while I was lying in a hospital bed. My reaction to being in a hospital bed was very confusing so I asked about what was going on.  A woman in the crowd stated, “you are in trouble and we are all praying for you.”  I have always been a spiritual person but the alignment of the dream and the return of my memory guided my goal for recovery and added to the foundation of my belief system.

It was shortly after that dream that I began recognizing my family and friends and understanding that I had been injured.  It took a few more weeks before I could speak.  For several weeks I kept thinking I was in a hospital in Arlington, VA.  Even though I could speak I didn’t communicate very well. I had lost a lot of my vocabulary and couldn’t remember the names of things and the trach made it difficult to speak.  My short-term and long-term memory were almost nonexistent.  My family tells me that they would often come to visit only to hear from the nurses that I had pulled out PIC lines and IVs and dismantled my neck brace.  I didn’t want to be in the hospital and clearly did not understand why I needed all of the contraptions that they had on me.

One of the best things that the doctors did was to get me started on my rehabilitation pretty quickly after I was moved out of CICU.  My rehabilitation like so many other TBI patients meant that I had to relearn the most basic functions like breathing, drinking, eating, moving, communicating and going to the bathroom.  It is very much like starting life over again.    The fact that I was very physically fit when I was injured meant that I regained some of my physical skills more quickly than my verbal or communications skills.  This is also probably the result of the fact that my injury was to the left side of my brain and affected my speech, cognition and memory.  This made much of my rehabilitation very stressful.  It also meant that I needed almost constant supervision because I didn’t understand or couldn’t remember what I could and could not do yet especially in terms of getting around.  This was very dangerous because I was missing part of my skull at the time and any type of fall could be very dangerous.

When I was discharged I still had my feeding tube and the incision where the trach had been was still healing.

Shortly before my discharge the hospital told my wife that I would need to continue my rehabilitation (and luckily our insurance allowed for that) and gave her eight pages of facilities to consider. We were so very fortunate to have help in finding a rehabilitation facility from a family friend whose brother had recently needed rehab.   Without this help I am not sure that I would have ended up at Pate Rehabilitation in Anna, TX.  Pate specializes in rehabilitation for those dealing with brain injuries and strokes.  I truly believe that I would not be doing as well as I am doing today without the help of Pate and insurance that allowed me to get this help.

I realize that my recovery is the result of an unbelievable support system of family, friends, doctors and our church.


** My wife helped me compose this post because some of the details are a bit foggy

My Pre-TBI Life

I have spent most of my life with fire departments. I was a volunteer for two years and for thirty years I served as a career firefighter with Arlington County. The  fire service was  a challenging and rewarding career and I was committed to providing fire and emergency services to the community. I was fortunate to be able to retire at 48.

My injury happened about two months after my retirement. Most of my career with Arlington involved working on a ladder truck so it is kind of ironic that my TBI happened because I fell off of a ladder while working on my house. I have no memory of the accident and probably never will know exactly what happened. Thankfully my daughter arrived home at just the right time and called 911.

As a result of my injury I went from providing care to others to being the one needing the services of the fire department and medical services. I am thankful every day for the services provided by McKinney Fire Dept., Parkland & UTSW Hospitals and Pate Rehabilitation. I also feel very lucky to have moved to a community that provided and continues to provide significant support to my family and I. 

One of the most difficult parts of being a TBI Survivor is dealing with the changes that are part of one's post-injury life. TBI Survivors and their families face many challenges some can be negative but some can be positive. After 2.5 years my family and I are still adjusting to our "new normal." Part of recovery and moving forward is letting go of what was and embracing what is. I think we are all still working on that but we have have more good days now.

I have learned a lot about dealing with my TBI from others and look forward to learning even more as I continue to recover.