Pat Summitt's Alzheimer's Disease Diagnosis: Reactions From The Web & Personal Experience

When I first learned about the sad news that Tennessee Lady Vols coach Pat Summitt had been diagnosed with early onset dementia, I was at a stop light after speeding to pick up my father from the local Alzheimer's center we take him to three days a week.

Like ready-to-go-Dave-Chappelle-on-a-copper type speeding.

Occasionally Dad gets in these trances where he wanders aimlessly looking for something yet not quite knowing what he's looking for. While it is somewhat comforting to know that 7 in 10 Alzheimer's patients exhibit the same behavior - meaning it could be considered "normal" in the warped universe of this disease - it gets dangerous when he's wandering around a busy place, like Downtown Berkeley.

We got a call about an hour after I dropped him off in the morning to say that Dad had walked out of the center and was "not re-directable" (social work code for "downright belligerent"). Thankfully, by the time I got to the center, Dad had already been "redirected" to the center and I just had to walk in and pick him up. But I was standing there chuckling to myself as they were helping him go to the bathroom because he was walking around cheerfully as though nothing had happened.

Of course, in his world, nothing really had happened about 30 minutes ago anyway.

"Hey, how are you?" he greeted me, extending his hand with some glimmer that he recognized that I was that man who drove him places (he once asked, "How long have you had this job?" "Oh, I don't know, a few months," I responded").

So my heart sank almost immediately when I got the text about Summitt's situation halfway to the center - and remained heavy for most of the day - not only because I wouldn't wish Alzheimer's on the families of my worst enemies, but also because it was a reminder that I never expected to be speeding down the freeway to pick up a zoned out Dad putting himself in harm's way when we first learned of his early onset diagnosis about a decade ago at about the same age Summitt is now.

I told the Swish Appeal staff during the NCAA women's Final Four that I would be leaving Seattle to return home to the Bay Area to help out with Dad, which has had an impact on how things around here have run.  But honestly I consider it a great privilege to be in a situation where my family is able to rally together to help deal with this daily emotional roller coaster together - I cannot fathom what it's like for people who don't have the luxury of that type of support network and it's great to know that Summitt will have tons of support. But the hardest thing about all of this, support or not, is that every day is completely unpredictable, which compounds the reality that the path forward is even more uncertain.

I hesitated to even write this in the wake of Summitt's sad news because it's not really about me and I fully understand that it's different for each person, particularly as I've learned more about the disease and seen other people who are dealing with it; it's about what her and her family - real and Lady Vols - face as they try to get through this together. Nevertheless, this is the lens through which I read this news, both very literally at that moment and more abstractly; it's hard to truly express the wave of empathy that came over me when I heard about this or anyone who has just been diagnosed at such a young age. 

But to be quite honest, some of the coverage of the situation - as with any situation - drew out an almost hostile response from me (this, for people that know me, is not difficult to do, by the way), partially because of my own sense of how hard this situation is and in part  because of the way this has been framed in the context of her career.

On the other hand, some of the coverage has resonated quite deeply, illustrating almost perfectly what I perceived my Dad to be going through at the beginning and the difficulty of trying to navigate such an unknown situation as a family. So here's a few of those links that come highly recommended from this basketball blogger's point of view.

• Sally Jenkins of the Washington Post wrote the story the resonated with me the most. And it's the emotions of that initial stage that really stand out. "I just felt something was different," Summitt said in the article. "And at the time I didn’t know what I was dealing with."
• The Alzheimer's Association sent out an email with the news which my mom passed on to our extended family to "salute the courage of Coach Pat Summitt in sharing her diagnosis" and I think that's a great response to her announcement, particularly in light of the feelings she shared with Jenkins.
• The Alzheimer's Association also offers further information about dealing with younger-onset issues among their links that's worth looking at. As the years pass, their point about children feeling "fear and grief at the gradual losses the parent experiences" is something that I think we've all dealt with in different ways.
• Eliza Barclay of NPR's Health Blog did a Q&A with Robert Stern, director of the Alzheimer's Disease Center Clinical Core at Boston University, that provides some insight about the difference between dementia and Alzheimer's as well as some of the risk factors.
  
• Shari Roan of the Los Angeles Times illustrates the silver lining of Summitt's decision to make a public announcement about this with a season ahead of her that echoed the sentiment of my mom's first reaction: Pat Summitt getting Alzheimer's will bring more attention to the fact that this is a serious problem that demands more funding for research, more effort to level the playing field of unequal treatment, and more scrutiny on what type of care or health system does (and doesn't) support. Roan focuses on the need to find more reliable pre-symptom tests.
• Indianapolis Colts and former Tennessee quarterback Peyton Manning released a statement in support of Summitt, which further underscores the point that this will bring attention to the disease well beyond the women's basketball community.
  
• Of course SB Nation's Rocky Top Talk is discussing the issue and the comments on their initial post highlight another point that makes this so difficult - for someone that just coached a team to an Elite Eight appearance, there was really no way to have guessed at something like this being an issue. 
• Chris Pendley of Rocky Top Talk later wrote that, "Coach Summitt is our coach. She defines what this university is, what it stands for, where it came from, and where it's going" and injects a dose of levity into a harsh reality by closing with, "...dementia may end up winning in the end. But it's going to spend years on the wrong end of The Stare first, and with a legion of supporters giving it the stink-eye. I wouldn't want to be in its shoes."
• Back in May, Larry King did an Alzheimer's special on CNN that Bob DeMarco of the Alzheimer's Reading Room called, "A Grand Slam Home Run" and I agree. My family and I watched this (twice) when it first aired and although I think each of us had different reactions to it, it did an outstanding job portraying real life and very touching experiences with Alzheimer's. King provided some background about why he took on this cause in an interview prior to its first airing that is also well-worth watching.
  
  But the best part of that special was near the end where one of the twins noted that there are moments of laughter or signs of their "true" personality that you come cherish more by the day. In a way, you sort of draw strength from those in knowing that Alzheimer's can never take away one's humanity even if, as Pendley said, it ends up winning in the end. As someone whose father is the primary source of my passion for basketball and thus indirectly the reason for the words that appear on this site, those favorite moments for me - and this happened during the NBA Playoffs - are when Dad blurts out something like, "What was he doing?" or "Great play" which at the very least lets me know that the person I grew up admiring is still there.