Great Article about Possible CTE diagnosis in Living Patients

Follow the Link below to read an article at Wired.com.  It gives a great "scientific" explanation of CTE (Chronic Traumatic Encephalopathy) and the science behind the possibility of a PET scan being used to diagnose CTE in LIVING patients.  For all the former players and families dealing with the symptoms of this condition, this is a promising breakthrough in taking the first step toward accurate diagnosis while there is still time to provide help and support for the individuals suffering from the long term effects of brain trauma.  For current players, this could provide diagnosis in the early stages of CTE and prevent the possibility of destroying their future through cognitive decline, depression and behavioral changes.

Click on the link below to read the article at Wired.com:

http://www.wired.com/playbook/2013/01/pet-scan-cte-test/

Possible Breakthrough in Diagnosing CTE in Living Patients

Below is a link to a Fox News Report with some promising news about the diagnosis of CTE in LIVING patients.  The great thing about this possibility is that doctors can actually identify this condition and provide diagnosis, treatment and support for patients suffering from this condition WHILE THEY ARE STILL ALIVE.  Currently, the only way to accurately diagnose CTE is post-mortem.  Through an autopsy of the brain, the condition is identified.  However, at that time it is too late to help the individual (and their family!) who was suffering from this condition.

That's why this news is so encouraging!

Click on the link below to read the story at FoxNews.com:

http://www.foxnews.com/health/2013/01/22/new-scanning-technique-reveals-proof-brain-damage-in-living-retired-nfl-players/

Play the Ball Where it Lies

Last summer we attended the PGA Championship in Atlanta.  Over the week of the tournament, I watched as my husband had difficulty recalling names of friends.  I noticed how he wanted to be sure I was by his side...just in case, and I noticed how the crowds made him nervous.  Events like this, which are out of the ordinary for our everyday life, seem to highlight the changes in my husband's functioning.  When moments like this surface, I often find myself wishing that things could be different.  But wishing isn't going to change anything, and it expends energy that could be used for more productive activities.

As I walked the course and watched several days of great golf, a common theme surfaced in my mind:

"Play the ball where it lies."

If a golfer drove his ball into the rough or a trap, he had to choose the right club and make adjustments in his swing to get himself out of whatever precarious situation he found himself in.  The golfers didn't "give up" when the going got tough.  They didn't ask to move their ball to an easier spot in the fairway.  They used the tools they had and figured out a plan to get themselves back into the fairway or onto the green.

Likewise in my life, when I find myself in the "rough," I must "play the ball where it lies" by making adjustments in our lifestyle and choosing the right tools to try and keep us moving along in the fairway of life.  My sons and my husband are depending on me to navigate us through these tough times.  Giving up is not and option.  Complaining about it doesn't solve anything.  I simply need to take this lesson from golf and "play the ball where it lies."

4th and Long, But We're Not Going to Punt

“That is why I tell you not to worry about everyday life ~

Can all your worries add a single moment to your life?”

Matthew 6:25a; 27 (NIV 2010)

  

Sometimes it’s difficult NOT to worry.  Lately I’ve been experiencing a period of troubling upheaval in my everyday life, but the above verses are telling me I should not be worried.   My husband was recently diagnosed with a debilitating health condition due to football related concussions which causes me to worry about his health, his care and treatment, our family’s future, our financial stability, the future for my three sons…and myself.  Everything I once thought was “solid” is now crumbling right before my eyes. 

Our MVP has been Sidelined

My husband has always been the “captain” of our family’s “team.”  In essence, I feel that our MVP has been sidelined from the game of life, and I’m like a rookie being called in on 4^th and long…and we’re not going to punt.  Now it’s up to me to play the position of "quarterback" and lead our team to a victorious future.  The clock is ticking, with little time left, and I must spring into action.  The team is counting on me, and the outcome rests solely upon my shoulders. 

Doubt and Fear Rumble Through My Mind

I run to the huddle and see the faces of my “teammates” looking at me with hopeful anticipation.  They are waiting for the next play call.  From the bench, my husband is counting on me to pull us through.  My team is depending upon me to execute the next play with skillful precision.  For a moment, I am frozen with fear thinking about the magnitude of the responsibility I face.  I hear jeers of self-doubt resounding in my ears.  As I lower my head in the huddle, the “what-if’s” spin through my mind.  What if I fail?  What if I throw an interception?  What if I am sacked in the backfield?  What if I make a wrong decision?  What if I let everyone down?  I begin to I question my abilities.  I lack confidence in my preparation for this position, and I even begin to question my “Heavenly Head Coach” for putting an inexperienced quarterback into life’s game at such a crucial point.  I certainly don’t want to “choke” with this enormous assignment.

I hear the Voice of my Heavenly “Head Coach”

I lift my eyes to find the Coach and listen for His play call.  Above the roar of the “noise” in my head, I hear His gentle voice, providing me with insight.  I have studied His Play Book.  I trust His infinite wisdom to show me how to lead my team in the best possible way.  His eyes are upon my every move, and He has known all along that He was preparing me to play this critical position.    I know He has equipped me completely to assume this role.

“…And who knows but that you have 

come to your position

for such a time as this?”  

Esther 4: 14

I feel weak with fear and anxiety, but I realize that I don’t have to rely on my own power, wisdom, capabilities, resources or protection, because He promises to be all of these for me.  He is my strength when I am weak, and He will infuse me with Heavenly wisdom when I have none.  He tells me NOT to worry.  I simply must trust in Him, obey His commands, and He will supply my every need.

I accept His instruction and call the next play for my team.  I will trust Him implicitly for the outcome.  My worries are replaced with inner calm and quiet confidence about the fact that the Coach knows what’s best for each one of His players.  He doesn’t make mistakes.  We break the huddle and the clock starts ticking…

Hut 1!, Hut 2!, Hut! , Hut! , Hut!!!….

2 Year "Anniversary"

Wow, it's been such a long time since I've updated anything here.  December 10, 2012, was the 2 year anniversary of my husband's diagnosis.  As you can imagine, I've been very busy handling life.  In some ways, we are better off than we were in the scary, tumultuous, early days of this journey.  I feel much more "stable" now, and I've learned a lot about concussions, CTE, dementia, insurance, disabilities, care giving, health care, Social Security Disability Insurance AND myself in the process.

Our family has slowly adjusted to our new "normal."  Our sons have all accepted that our home life is different, yet their relationship with their dad has been strengthened.  They now have a father who is home and always present.  Before, he was working all hours of the day, and they hardly saw him during the week.  The time they spend with him is a blessing.  The health care routine for my husband is now established and is working well at the present time.  I have adjusted to the fact that I am the bread winner for our family and care-giver for my husband, and I have figured out how to manage our lives given our new parameters.

Our oldest son graduated from high school in May and started his freshman year of college at University of Georgia.  Our middle son started driving this year (!), and our youngest son in on the brink of becoming a teenager.  In May I will officially have three teenage sons under one roof!  That thought used to scare me, but after what I've been through in the past two years, it pales in comparison.

I have a lot of information to share about our experiences over the past two years, and I will post them here as time allows.  I hope that some of the these lessons will be helpful to others who are caring for a loved one suffering from post-concussive issues.  I have forged many new friendships with other wives of former NFL players who are caring for their husbands with dementia related conditions.  The scary part is that I believe there are so many men out there who don't realize their problems are a result of concussion injuries incurred years ago as football players.

Until next time...I'm keeping the memory alive!

August 2011 Update

Time Flies, doesn't it?  It's been months since my last post, yet the minutes, hours, days, weeks and months seem to be blurred together.  We are further down the road with my husband's condition.  I've been through the difficult process of navigating the health care system.  Searching for the right combination of doctors, medications, treatments and therapies which can help my husband be the best he can be.  We saw three or four doctors before finally finding the "right" neurologist whose specialty is the type of cognitive degeneration which my husband is experiencing.  Our next step is going to a cognitive therapist.  We haven't been to the first appointment, yet, but will update to discuss how this helps...or not.

I'm realizing that there is so much that doctors DON'T know about the brain.  It is still a guessing game for so many questions we have.  While they can "rule out" certain conditions, they can't accurately test for every possible condition.  For example, Chronic Traumatic Encephalopathy can only be accurately diagnosed post-mortem, which is a sad reality.  This is the condition that we belive has led to my husband's decline in cognitive functioning, but we may never know for sure...  However, what I have come to accept is that I may never have all the answers to all my questions, but I must deal with reality as we know it and make the best with what information we do know for sure.

Another milestone has been going through the process of applying for social security disability.  Fortunately (or maybe it's unfortunately?) my husband's condition in under the "Compassionate Allowance" category of conditions which usually guarantee approval the first time you apply.  While I am thankful for the benefits, I am in the process of seeking an appeal for a denial of reconsideration of benefits.  I am trying to gain benefits for him further back in time than the Social Security Administration has approved.  Perhaps I'll post more concerning this process as time goes on.

I also went through the process of applying for disability benefits through our private insurer.  Thankfully, we were able to receive full disability benefits all the way back to the time of onset of his condition.  That, too, was an exhausting process, but worth the time and effort to see the end results.

Overall, I am stronger today than I was 9 months ago when the devastating diagnosis was revealed.  But I'm also more aware of how unprepared I am for the unpredictable future with my husband and our boys.  I'm bracing for a storm, and trying to manage our resources as best I can. It's heartbreaking to watch the one you love fade away right before your eyes.  The only thing certain is that things will continue to change ~ which makes it somewhat overwhelming at times. I'm trying to take one day at a time and enjoy the moments in the present without worrying what tomorrow will bring.

Faith, Family, Friends...the three things that keep me standing when I have no more strength of my own.

To be continued...

After the Diagnosis

Flood of Emotions
So how did I feel as I heard the words of the diagnosis coming out of the doctor's mouth?  It's hard for me to articulate exactly what type of feelings and emotions were going through my body and mind.  My husband was in a diagnostic center out of state with a team of doctors.  So as a group, they communicated this devastating news to me over the phone in the form of a conference call.  When they first began explaining the findings of their clinical tests, I couldn't believe what I was hearing.  I was trying to take notes as they spoke to me, and I remember my hand became so weak that I couldn't write on my notebook.  My body became so physically weak that I could no longer hold myself up in my office chair.  I slumped to the floor on my knees, crying uncontrollably but trying to listen to everything the doctor was saying.  I remember the doctor explaining that this condition was most likely due to football brain injuries, and he told me that he explained this to my husband by telling him in essence that he is a "Wounded Warrior" from his glory days of football.

Denial?

At first I wanted to believe that this was incorrect.  He's too young to have something like this happening to him.  How could they mention the term "disabled" in association with my husband?  However, each doctor who evaluated him discussed results of their individual tests which all matched with this diagnosis.  A brain scan and MRI both revealed areas of damage to his frontal lobe.  How could I deny these results when the diagnosis seemed like the missing piece of the puzzle of his long list of symptoms?

Numbness

The next few days are a blur to me.  Sadness, fear, anxiety, worry, doubt, anger, and emotional despair exhausted my energy.  It seemed difficult to place one foot in front of the other.  I was dealing with each day "moment by moment."  Thinking of taking "one day at a time" seemed like too insurmountable of a task  for me to handle. 

Panic & Uncertainty

As the emotional haze began to lift from my brain, I began to panic thinking about the need to prepare for our future, for the future of our sons, and for my husband's best plan of treatment and care.  The doctors told me about the need to apply for disability benefits and to obtain Power of Attorney and Guardianship for my husband. 

Jolted into Action

The shock of my new reality hit me one morning, when I envisioned myself bearing all the responsibilities of my family solely upon my shoulders.  It seemed like I was struck by a lightning bolt which injected me with energy.  I realized that it was up to me to make the best of this situation for the benefit of my family.  My sons were depending upon me as well as my husband.  Our future depends upon my actions today.  I began making lists of people I needed to contact including our financial manager, our insurance agent, our bank, doctors, organizations, social workers, therapists, family and friends.  I knew that I was not going to be able to navigate through this journey alone.  I began a targeted search online for any and every resource I could find that might possibly provide me with guidance and wisdom with my new reality. 

Reorganized Life

I slowly began to realize that life would never go back to our old version of "normal."  I needed to restructure our lives within the framework of a new version of normal.  Priorities changed, schedules changed, things that mattered before seemed minor now in comparison to this monumental task.  I have always been a goal oriented person.  So I began writing down long range goals as well as short term goals which involved our family's future and my husband's care and treatment.  Establishing these goals helps me to focus each day on smaller tasks which can move us in a positive direction.

Acceptance of a New Normal

I'm still defining our new normal, but I'm much stronger now than I was a month and 1/2 ago when we first learned about the diagnosis.  Knowing what his condition is helps me to understand his limitations and behavior.  That was the first step in learning to best chart a course for our future.