HJNO May/Jun 2023

HEALTHCARE JOURNAL OF NEW ORLEANS I  MAY / JUN 2023 15 time had made us exchange places. Smith was withdrawn during that meeting and didn’t have the bandwidth to do the tests that were a usual part of our sessions there. His language was broken, and his body and mind were giving out on him. The doctor asked if he would consider donating his brain to science so they could study his glio- blastoma. He immediately looked up and said, “Yes!” She repeated the question, and he nodded his head assuredly and said “Yes!” again. He was lit up. We all three laughed; strange things light up folks with healthcare backgrounds, I guess. She turned to me and asked, “Well, what do you think?” “Sure,” I said, then she looked at me and told me, “And Dianne, you will also get your answers on CTE.”Then I lit up. This was the first time since I had started this strange journey that a doctor uttered the phrase “CTE”without me bringing it up. I had been asking doctors for years if they thought what was going on was related to playing football. Then the brain cancer hap- pened and I was told there is no correlation, which never really made sense to me. The possibility of finding out if this was football related? … Yes! Every time we went to that brain clinic, it was what I assume it must be like to go to a fortuneteller. Except instead of a crystal ball, they look at blood tests and MRI results to determine your future. Some- times it was good news, sometimes it wasn’t, but it was always a little nerve wracking because you were never quite sure what the answer would be. I am so grateful we were asked to donate his brain that day and that their teamunder- stood how to test for CTE. I wouldn’t have taken it upon myself to try and get a CTE analysis done because I had been told since he was diagnosed that his behavior was most likely related to brain cancer. Was there comorbidity happening? We were being offered the ultimate brain analysis through C. Dirk Keene, MD, PhD, and his team at the BioRepository and Integrated Neuropathology (BRaIN) Laboratory at UW. Acrystal ball, if you will, into the past — this What Is Chronic Traumatic Encephalopathy (CTE)? Chronic: Conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both. Traumatic: Injury to the body, or an event that causes long-lasting mental or emotional damage. Encephalopathy /in ˌ se fə ˈ lä pə thē/: any disorder or disease of the brain, especially chronic degenerative conditions CTE is a term used to describe incurable brain degeneration likely caused by repeated head impacts (RHI) and recurrent traumatic brain injuries (TBIs). CTE slowly gets worse over time and leads to dementia. CTE has been found in the brains of people who played football and other contact sports, including boxing. It may also occur in military personnel who were exposed to explosive blasts and domestic abuse victims. Early symptoms of CTE may not be noticeable at first. These include mood changes such as depression, suicidal thoughts, personality changes, behavior changes such as aggression and mood swings, and alcohol and drug misuse/abuse. As the condition gets worse, more noticeable problems with thinking and memory occur, including short- term memory loss, confusion, such as getting lost or not knowing what time of day it is, difficulties with planning and organization, and problems with movement. CTE symptoms don't develop right after a head injury. They develop over years or decades after repeated head trauma. 1 Currently, CTE can only be confirmed post-mortem — if the brain is donated to a facility specializing in CTE pathology. 1 NHS.“Chronic traumatic encephalopathy.” Last reviewed Dec. 29, 2022. https://www.nhs.uk/ conditions/chronic-traumatic-encephalopathy/ time, using his brain tissue. It would speak for itself by the only means available to us today, by looking at the actual tissue micro- scopically. Would his brain show the signa- ture tau pathology from all those head hits as a player? Was this part of what we were experiencing? I was so curious to see what they would say. Dirk and I talked, and he explained the process. I had all the paper- work filled out in advance, and I made sure that his team’s number was the first num- ber I called after Smith died because there was a short window in which we could get the most pathology information, and a lon- ger one where we could get less. They gra- ciously complied, and we got the former. The entire donation experience was so respectful from beginning to end. Dirk and his team communicated to us multiple times that they felt brain donation was the great- est gift someone could give to scientific research. I am sure other researchers study- ing other body parts communicate similar sentiments to donors and their families, but somehow doing this just felt so right — Smith was continuing to give back to a field that meant so much to him. The postgame neuropathological diag- nosis of Smith’s brain included the glio- blastoma, IDH-wild type, which we knew, but it also showed traumatic brain injury was present. It confirmed chronic trau- matic encephalopathy (CTE), low stage; age-related tau astrogliopathy (ARTAG), patchy; mild cerebrovascular disease; arte- riolosclerosis; and low Alzheimer’s disease neuropathologic change (ADNC). When I got the pathology back, I really started looking into CTE. I was surprised. Nobody has been counting former col- lege football players who have died of CTE, brain cancer, or, more shockingly, any cause of death. Nobody is counting. There are 800,000 former college football players, and nobody is counting how they are doing. There was one study out of Boston Uni- versity, published in JAMA , that revealed a cohort of former Notre Dame football play- ers were four times more likely than the Above: The unique CTE tau signature found in Smith’s brain.