I saw Pat Summitt and her son speak, in person, last week. Her focus now is now on raising awareness, educating, and raising money for research. There was no silliness mentioned about doing crossword puzzles, etc. They were right on target. Since this was at the Alz Association Advocacy Forum, maybe they have been redirected by the Association and have come down to earth. Also, she's had more time to come to terms with her dx. I was particularly impressed by her son, who was very composed speaking to a crowd of about 800 people.
Marilyn---as a proud Tennessee alumna, seeing Pat Summitt at the dinner was a (bittersweet) highlight for me. But I must say, having seen her speak in person numerous occasions, her decline was obvious to me. Coincidentally, the day after I returned from my trip, the University president was in Houston at the reception, and when I mentioned to him I had been at the dinner, he mentioned that Pat's son Tyler was always wise beyond his years but that now he is facing this with his mother, everyone is amazed at his maturity. Tyler is the same age as my youngest daughter, who went with me to the Forum, and I think she (my daughter) appreciated seeing the young people her age who are dealing with this disease in their parents.
Emily..your suggestion to shout it out that " You will die but before you do, you will wilt into a shadow of your former self" or....something similar when someone says something equally as stupid to one of us, is something maybe we should be saying rather than being so polite all the time to well meaning dolts.
Marilyn---my daughter is 21, junior in college, and I'm pretty sure Tyler is either same or just turned 22---he is graduating this month. My daughter is a communications major, and she found it so interesting on so many levels, for example, she has studied Frank Luntz in class! And I think she ended up being the only one in our Houston delegation who actually met with a real congressman---the rest of us met with staffers, but she went with one of the local Alz Association policy ladies to meet with a congressman whose Ambassador wasn't at Forum. And when the two of us met with our own congressman's staffer, I was so proud of how she handled herself! She was a freshman in high school when her Dad was diagnosed, and we both got very sad when one of the early-onset men stated he wanted to see his son graduate from high school, because her Dad/my husband had declined so much in 4 years he couldn't go to her graduation. I wish my older daughter could have gone, but she is a teacher and couldn't get the time off!
Texasmom--What a great experience it was for your daughter. Perhaps it will even influence a career choice in some way. I understand about the emotional impact of hearing the man with EOAD say he wanted to see his son graduate. I found the whole 3 days an emotional drain, telling our story numerous times, hearing so much about AD. However, I'm glad I did it and hope to go again.
Just have to report that Tyler Summitt graduated this morning from UTennessee, College of Communications (along with my nephew, which is how I know) and Pat Summitt was there, of course, and received a standing ovation from crowd. I am so thankful she and Tyler were able to share this, since we all know the next few years will be so difficult for them.
This is a link to a CNN article about Coach Pat Summitt. As you probably recall, Ms. Summitt was diagnosed with early-onset AD in 2011. The article discusses life expectancy, which has been a discussion topic recently.
I am saddened by the news but I hope her relatively quick death - barely 5 years from diagnosis to death - will help people understand the truth about Alzheimer's Disease. You can't "fight" it, no matter how many basketball championships you have won; it is 100% fatal ALL OF THE TIME. There are no survivors. Until someone of prominence dies from AD, anyone who hasn't been personally touched by the disease is usually surprised by the death. Do you know how many times I have heard - "You mean you can DIE from Alzheimer's?"
Sad about the loss that we are all too familiar with.
And yeah, I was wondering if somebody (certainly not one of us) was going to comment on how all the mind games and and puzzles and nutritional therapy (guess the coconut oil failed too) was as ineffective in her as it is in everybody. This aint cancer you cant fight it, resistance is futile.
No one has ever said that to me but if they did I would not assume they thought you could recover from Alzheimer's. Everyone I have ever talked to about Alzheimer's knows that it is a permanent degenerative condition that you will have until you die. Some of those people, however, do not realize that Alzheimer's can actually be the cause of death. In that sense, I disagree that Alzheimer's is 100% fatal all the time. It is only fatal if something else does not get you first. Many times, people die of other causes before Alzheimer's reaches the stage where it can kill them. In fact, isn't that what most of us hope for - that our spouses will not die of Alzheimer's, but will have a fatal heart attack or something similar that will spare them from going through the last stages of the disease? Last month, one of my husband's roommates died in his sleep. His dementia was not very far advanced and I don't know what killed him.
As far as "fighting," that's just sports baloney. People just get used to talking that way and if it helps them, that's nice. Frankly, I question the "battle" metaphor when it comes to cancer, too. I had cancer and the reason I recovered was that it was at an early stage and it was highly treatable. The fact that I thought I would survive was not the result of my having a "positive attitude"; it was a result of my reading up on the science and looking at the statistics. My attitude was the result of that, not the cause.
The "cause of death" in people who have been diagnosed with ALZ (or related dementias) is important because it drives research and funding.
20 years ago in nursing school I was solidly taught that "Nobody ever dies from ALZ they always die from something else". This did not make sense then and does not today. Because by this token nobody ever dies from anything but 'cardiac arrest'. A 30 year old with end stage cancer on hospice after chemo and radiation died 'when their heart stopped'. (cardiac arrest). A teenage drunk driver in an accident who bleeds onto the pavement died 'when their heart stopped'. (cardiac arrest). A 110 year old in a nursing home doesnt wake up one morning died 'when their heart stopped'. (cardiac arrest).
So, lets spend time, money and resources to FIGHT, CURE and PREVENT death from "cardiac arrest". Looking at the three situations above (all the exact same 'cause of death') where would you spent the money? You cant of course because they are not the same cause of death. Yes, they were all pronounced dead when their heart stopped, but the reasons are not the same.
At one time ALZ was the top 15 or 20th leading cause of death in the USA. This because ALZ patients died from; cardiac arrest, pneumonia, hip fractures, and bed sores. Then finally doctors began identifying that these people were not lying in bed and falling down because they were lazy but because it was actually ALZ that put them there.
Eventually doctors began listing ALZ FIRST on the death certificate. and POOF! ALZ went from #15-#20 to the number 5 leading cause of death in the USA! Now since ALZ is #5 more money and research is pouring into it. (remember Obama signed some ALZ bills recently?)
So yes people DO very much 'die from Alzheimer's disease! And the more we let the world know that it is a terminal condition the more time, interest and money will flow into doing something about it.
And telling people that puzzles and coconut oil are cures does nothing for ALZ, Telling people that there STILL is no cure, forces researches to look elsewhere for answers.
I live in TN and remember when she announced that she had the diagnosis. The reporter ended the interview with "if anyone can beat this Pat Summit can". I clearly remember thinking "you idiot...Pat Summit doesn't stand a chance. Just because she is a celebrity doesn't mean that she has any better chance than anyone else. Barring a miracle from Almighty God...she is doomed. Just like all the rest of our spouses".