Nearly everyone has been heart-broken over the news of Robin Williams. In recent days, we have discovered that Williams not only had been suffering with depression for years, but also was recently diagnosed with Parkinsons Disease. Because of Williams death, physicians are being advised to more aggressively treat patients for depression that have been diagnosed with Parkinson’s Disease.
How much free agency do people with brain disorders have? Mormons generally believe that people born with mental retardation or Down’s Syndrome are not in need of baptism. (A teenage girl with Downs Syndrome on my old ward, daughter of a member of the bishopric, recently elected to become baptized herself so that she could participate in baptisms for the dead with the young women of the ward.) But when brain injuries, such as stroke, Alzheimers, Dementia, depression, etc., his someone later in life, how much free agency do they really have?
I was fascinated recently with the PBS documentary League of Denial. In short, the National Football League is facing a crisis of lawsuits concerning head injuries of players. It is becoming alarmingly apparent players have an increased problem with dementia and Alzheimers, and a recently discovered brain disorder, Chronic Traumatic Encephalopathy (CTE) has been discovered in the past 15 years or so. The discovery of the disease was quite interesting. Mike Webster, the Hall of Fame center for the Pittsburgh Steelers had been a great husband and player, but became so erratic late in life that his wife divorced him and he became nearly homeless due to his erratic behavior, drug addiction, and diagnosed depression. The NFL initially declared that Mike had been mentally disabled due to his career, and made an undisclosed settlement. Mike died of a heart attack in 2002 at age 50. His family asked for an autopsy, and Dr. Bennet Amalu was surprised to learn that Mike’s brain did not have the classic look of Alheimers. Amalu became the first to discover CTE. Currently, the only way to diagnose CTE is after death. Many other football players have been discovered with CTE.
- Junior Seau, a Hall of Fame player with the San Diego Chargers and New England Patriots, recently commit suicide at age 43 by shooting himself in the chest, and left a note that he wanted his brain studied.
- Chris Henry, just 26 years old, was involved in a domestic dispute with his girlfriend. She fled in a truck, he jumped in the back and either fell out or jumped out to his death.
- The most shocking case involved 21-year old Owen Thomas, a University of Pennsylvania football player. He hung himself in his dorm room. He had no history of head injuries or concussions.
How many football players drug and alcohol addictions, domestic violence, and other erratic behavior can be attributed to CTE? Leigh Steinburg, a sports agent for Hall of Fame quarterbacks Troy Aikman and Steve Young, both of whom left the game due to concussions, told a situation in which Troy was knocked out of a game. (You can watch Leigh’s interview here.)
So Dallas vs. San Francisco was a game where I had large numbers of clients on both sides, and also both quarterbacks, both number 8s. And I happened to be sitting for that game next to former President Bush in [Cowboys owner] Jerry Jones’ box.
So Dallas wins, and they were exultant. So my first job was going to the losing locker room to console Steve Young and Brent Jones and Tim McDonald and all those clients. Then I went to visit Troy, who was at Baylor Med Center in downtown Dallas. Now, Dallas was awash in celebration, as only Dallas can be — horns honking, fireworks. The air was filled with celebration and shouting, and Troy was sitting in a darkened hospital room all alone.
As I went in his face brightened, and he looked at me, and he said, “Leigh, where am I?” I said, “Well, you’re in the hospital.” He said, “Well, why am I here?” I said, “Because you suffered a concussion today.” He said, “Well, who did we play?” I said, “The 49ers.” And he said, “Did we win?” “Yes, you won.” “Did I play well?” “Yes, you played well.” “So what’s that mean?” “It means you’re going to the Super Bowl, and you really only have a week here to prepare.” “That’s great. That’s great.” His face brightened.
So we celebrated for a moment. Then maybe three or four minutes passed, and he looked back at me, and his face was troubled again, and he said, “Leigh, why am I here?” For a minute I thought he was joking, and I said, “You had a concussion.” And he said, “Did I play today?” “Yes.” “Who’d we play?” And I went through the same sequence of answers again. And his face brightened, and we celebrated again.
Maybe 10 minutes passed, and he looked at me with the same puzzled expression and asked the same sequence of questions. It terrified me to see how tender the bond was between sentient consciousness and potential dementia and confusion was. I finally wrote down on a piece of paper the 10 most commonly asked championship-night questions and answers so we could hold them in front of him and stare at them.
But I, at that moment, became absolutely convinced that I could not any longer represent people that I cared for and loved, and had a fiduciary responsibility, without doing everything in my power to discover the causation and work on the ways of prevention and cure for this problem.
Leigh goes on to discuss Steve Young’s last game against the Arizona Cardinals. Steve had been blindsided by a hit and was lying on the ground.
I thought he had a concussion. And then I remember he came out after the game, and they asked him if he had a concussion, and he said no. And I thought at that point that was a lot like asking a drunk driver if he was drunk, because if the issue was whether or not he was impaired, asking an impaired person to evaluate his own condition was hardly the point.
It became clear to me at that point that players didn’t know enough about what constituted a concussion to be able to self-diagnose.
Let’s talk a little bit about Steve Young, because we talked to him the other day. … You sit down at one point in ’97, maybe before that, where you sat down with Young and talked about concussions, the dinner in San Francisco after a Sunday game, and you ask how many concussions he had had. Tell me that story.
I recall asking Steve how many concussions he’d had, and his response was, “You mean official ones?” I said, “What’s an official concussion?” He said, “Well, an official one is when you’re knocked out and carted off the field. But,” he said, “I get dinged all the time and just continue to play.” He said, “We might dumb down the playbook a little bit, but,” he said, “I couldn’t count those.”
A number of those, in other words, was impossible. So he was getting his bell rung, as the saying goes, constantly. What were you thinking when he said that?
It started me thinking about the issue of subconcussive hits, because there had to be damage occurring every time the head was hit. And if the definition of a concussion is not being knocked out but a blow to the head or body occasioning a change in brain function, then it meant that there was damage occurring every single time that he got dazed. And that meant that there was potentially a cumulative effect, an aggregate of all those undiagnosed hits that could be consequential. And it started me thinking about the fact that 99 percent of the players in a game were suffering subconcussive hits in every game. And an offensive lineman — and [defensive] linemen were certainly suffering them on every play, so that all of a sudden what we had was a ticking time bomb. We really had a health epidemic that was undiagnosed, because what was clear to me was we did not have older players that were overtly talking about having this symptomatology, so they weren’t aware of it. One or two things was happening. Either the older players were unaware of it or in denial, or the problem was going to get much worse, or both.
Leigh even notes that players who “head” the ball in soccer have problems with brain injuries, so football is not the only sport with the problem. Football has an astonishing number of players with CTE, but other sports like wrestling, baseball, soccer, hockey, and rugby have players with CTE as well. Steinberg is now a strong advocate to helping avoid CTE.
There were quite a few of you that took exception to my post discussing President Monson’s possible dementia a few weeks ago. My issue is not with his age, but rather is Monson acting like Steve Young where “We might dumb down the playbook a little bit” in order to give the appearance that Monson is functioning, but in reality, should he be taken out of the game for his own health? Are we denying his brain injury just as Steve Young, the coaches, and the players around him?
Finally, I had an interaction with my father last week, and I realized my father might be showing signs of dementia as well. (Incidentally, my father did play football as a youth, but basically prohibited all his sons from playing.) He has always been really good with computers, but had an astonishingly difficult time remembering and changing his password. My sister in law is a nurse, and she said she had noted problems with my father for a while. I asked her, “What does one do with a parent suffering from dementia?” She said early intervention is the best, but getting a parent to go to the doctor can be a very difficult process. Parents resist, just as Steve Young did. Sometimes an indirect approach from the spouse is beneficial. All I know is that this is a conversation that I do not want to have, but I know I need to have.
Some questions for you.
- How do you deal with a parent with dementia?
- How much free agency does a brain-injured person really have?
- How can we de-stigmatize depression, Alzheimers, and other brain disorders?
- If you were diagnosed with a brain disorder, do you think that assisted suicide is acceptable?
It is amazing that you would post this article at this time. I am LDS. My mother is not. She was recently diagnosed with Alzheimer’s but it has been obvious for quite a few years. She has also recently come to live with my husband and me so we may care for her at home as she progresses (or deteriorates, if you must) through the stages of this disease until death.
Until this time, we have enjoyed a long history of adjusting to and accepting the other’s religion. After 20+ years, we finally reached a level of comfort . . . she doesn’t judge my religion . . . I don’t judge hers and neither of us would ask the other to change in any way..
Now, it is all in flux. My mother realized that facing the mental decline of Alzheimer’s is more frightening than anything she has ever faced and is, more than likely, her last test on this earth. She has become very nearly obsessed with obtaining the gift of the Holy Ghost . . . so that she might be comforted through the trials of this journey.
On Sunday, she spoke with our Ward Mission Leader about how one receives the Gift of the Holy Ghost. She was quite coherent and understood what she was being taught. She has concluded (and I see it as obvious) that, at this late stage in disease, her physical mind is quite separate from her spiritual mind.
Her spiritual mind wants the Gift of the Holy Ghost . . . the Comforter. She was just taught the Church of Jesus Christ of Latter-day Saints is the only church with the priesthood authority to convey that gift by the laying on of hands. Tonight she tells me that she is not reluctant to follow that path and, to be honest, has just gone to bed with the prayer on her heart that she might know quickly the Lord’s will for her in these things.
I do not question her free-agency any more than I do the free-agency of our deceased ancestors. The real question becomes this . . . “Whose body is present for the ordinances that my mother needs to receive?” If her desire . . . right now . . . while yet living in her own physical body . . . is to receive the Gift of the Holy Ghost . . . to aid her in the final journey . . . . I see no reason to withhold that gift.
If . . . IF. . . she changes her mind when her physical mind is laid to rest . . . I know that a loving Father in Heaven will not force her to be or do or accept anything that she’s uncomfortable with.
You ask how I deal with a parent with dementia. I deal by recognizing . . . and helping her acknowledge and accept . . . her physical mind as a separate (or in process of separating) entity from that of her spiritual mind. That physical mind . . . that carnal mind . . . with which her body has been animated throughout her life . . . is surely failing.
I am alerting her to the capacity of her spiritual mind . . . to BE more . . . learn more . . . achieve more . . . . and live more . . . . eternally even . . . . than the physical or carnal mind that has animated her body on this earth. I am encouraging her to embrace, nurture, elevate, and increase in wisdom . . . using her spiritual mind.
She is anxious to do so . . . and she asks me throughout the day to remind her of that prayer.
The only difference I see with Alzheimer’s patients . . . or people with any other brain injuries . . . such as massive stroke like my husband or moderate stroke like myself . . . what I recognize is that we are NOT immune to the temptations of the Adversary. Each of us needs the Gift of the Holy Ghost . . . and the protection of gospel covenants . . . to walk the road that lies ahead of us. I pray that the opportunity is not withheld on account of the health condition of the physical mind.