The Brain Donation- NOT Alzheimer's

One year before Dennis passed away, I knew we wanted to donate his brain for research.  Much of what was happening did not make sense.  There were too many unanswered questions.  So while I was sitting by his side during the nine weeks of hospitalization, a good friend researched possible brain donor foundations.

What she found was there was no program in Texas and very few in United States who were even interested in taking the donation.  There were of course medical schools interested in the cadaver but nothing was found providing research and possible answers.  This was more than a little frustrating but for the time, I just let it 'rest'.

Then in the spring of 2011, I had the opportunity to interview for the Alzheimer Ambassador Program in Houston.  During the interview, I was met by the Public Relations officer for the Houston Chapter.  I found out I would have personal contact with targeted members of Congress building relationships with decision-makers and their staff and holding them accountable to their commitments to fighting Alzheimer's. He detailed the responsibilities and commitment involved.

The interview went well and I was accepted into the program.  But before leaving that interview, the PR officer and I discussed personal experiences and concerns I had with trying to find a place for brain donation.  To my amazement, he was excited to give me contact information for the Sports Legacy Institute.
[ SLI in Boston, Mass. was founded by Chris Nowinski and Dr. Robert Cantu in reaction to new medical research indicating that brain trauma in sports had become a public health crisis.  Post-mortem analysis of the brain tissue of former contact sports athletes revealed that repeated brain injuries could lead to neurodegenerative disease known as Chronic Traumatic Encephalopathy.]
Mr. Nowinski had recently been in Houston and spoke to the Texas based delegation soliciting brain donations.  In particular they were looking for individuals who were athletes with Alzheimer's/dementia.  It was just a matter of making contact with the donor office and within less than a week, all the necessary documents were completed.

This is what I call one of those "God moments".  It was such a huge relief to know that something good could come from all this.  As an educator, I knew something might be gained by taking part in the research.  Certainly Dennis had no head trauma that I was aware of but the Institute was excited to get their first "swimmer" donation.  This all happened just 6 weeks before Dennis passed.  Timing was everything!  By the grace of God our family and others would benefit from what might be found.

So it was the morning of Denny's passing, the Cottage made all the necessary contacts to the funeral home and to the Sports Legacy Institute.  Dennis was transferred first to the funeral home where his body was picked up by the Pathology lab assigned to this case.  His brain was harvested and body returned in less than 12 hours so all normal arrangements for the family could be scheduled.

After the donation was received, Dr. Robert Stern (neurologist) with the research team contacted me for an interview.  He explained the research process and sent critical release forms for all of Denny's medical records.  After he received all the medical documents, he held an 90+ minute conference interview with me.  We discussed detailed background questions, experiences, behaviors and all other information gleaned necessary to provide valid feedback.

It was explained that the research Dr. Ann McKee would be the leading pathologist dissecting and investigating our brain donation.  She would take the donation "in the blind" not knowing anything about the person (only a number assigned to the specimen).  Dr. Stern's role was to collect all the information available regarding medical treatment, behaviors and life experiences.  When all necessary data was completed by these two researchers, they would meet to put together a report of their findings; how it connected both with the physical specimen and the medical background.

This total process took over eight months.  Then I received a notice that a conference call with the research team was being scheduled.  Our family (myself, Scott, Sondra, Steve 'Denny's brother') and Denny's best friend Bruce were all connected into the conference call.  While waiting for the call that day, I was trying to stay calm but couldn't contain my anxiety.  My biggest concern was for our children and grandchildren.  There was NO known Alzheimer's in Dennis family history so where had this come from.

The phone rang.  The conference started.  Each of us had received a highly scientific three page autopsy report of findings.  The goal was to go over the report and answer all questions.  Much of what was shared in the beginning was lost to me with no scientific understanding of the terms.  But then it came!!!  This I did understand.  Dennis did NOT have familial alzheimer's.  He had trauma induced dementia.

Much discussion followed in answer to questions.  What Dr. McKee shared was that she was sorry that they didn't have more answers.  She said Denny's brain pathology brought up more questions than answers.  She said his donation was critical to further investigation.  They were extremely appreciative of our sacrifice -- but to me -- we were the one's who were appreciative.  Dennis had always stayed in denial of the Alzheimer's diagnosis.  He definitely had dementia though and what we found out was regardless the cause, his dementia would have been treated basically the same.

Our personal neurologist read the pathology findings and was not surprised.  During the ten years of treatment, he was always concerned with the diagnosis (but obviously had to treat the dementia).  He said they are learning so much more about CTE injuries and for Dennis it may have very well happened in Viet Nam.  [Dr. McKee had mentioned that they have findings of CTE with military service in Iraq and Afghanistan].  But regardless of where it happened or how it happened -- I thank the good Lord my children do not need to be overly concerned with the genetics of Alzheimer's.  It was a cloud they would have lived under forever had we not made the donation.

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On a personal note:  I left the Ambassador interview knowing it was not the program I wanted to serve at that time.  Being Ambassador is more of a legislative awareness and communication with legislators for further development of research.  For me, I see my service to those fighting this battle as a spokesperson to bring awareness to family needs, hospital care, emergency response and community support.