Just watched this on our local news, Catherine. We live in the area of UT Knoxville and were shocked to hear this but pleased that she is so open about it.
Read about this in this a.m.'s regional paper. Some folks still don't get it. Exercise, mental activities.... I believe dementias go where they want when they want. Wishing her the best.
Zibby you are so right. I do wish her and her family all the best on this difficult road ahead.......but was also struck with the Mental Activities and exercise is somehow going to stay off this disease. My first reaction was, Oh my so young the second, what a great forum to bring ALZ into the news. But then reading the comments I was stunned to think the portral of working out and doing Mental Activites will somehow slow the disease and not stating the obvious there is no cure!!! Just some medications (questionable for some) to slow the trip down for just a bit and only in the beginning. But then I thought she's still processing her future which has got to be so scarey for her and her family. Don't we all know that ......we have walk this path! I hope for her nothing but the best and to all in our Alzheimer's family. Ugly unfair disease.......I hate it !!!
I just read through some of the comments. Perfect microcosm of the various understandings (and total lack thereof) a random sampling of the public will bring to this issue.
You've got the well-wishers who recognize the sadness and hopelessness of the situation. The realists who say things like: "at most she'll coach for another year or two, then be emeritus." Harsh, but probably true. The fixers who pop up to admonish us all to take vitamin D and Calcium. As if. They must be related to Jean Carper. And the unthinking dreamers who are saying "she'll beat this just like she beat 1000 other teams." Yes, enjoy your parallel dimension. Wish we were there.
According to our local newspaper, a former coach at the university here, who knows Pat Summitt, said, "I know she'll fight this. If anyone can beat it, Pat will!" Duh! That deserves a letter to the editor. It's right up there with the mental activities comment.
These people don't have a clue. Their families must be free of this horrible disease. Maybe they are just trying to keep up the morale of the coach. Her own doctor won't tell her the truth.
Shirley, you are of course right. I wonder if it's useful for us to shout from the sidelines: "There IS no cure! You will die! But first, you will fade to a pitiful shadow of your former self!"
Doesn't seem kind, does it?
On the other hand, we would prefer the world-at-large not be living with these silly delusions because they distract from the immediacy of need for research.
Can't you just see her friends and family, giving her puzzles and video games? The exercise she had all her life apparently wasn't the right kind. I wonder how long they will let her drive. I saw Glenn Campbell on ABC Nightline last night...doesn't know his age. His wife of 30 years was finishing his sentences for him. Cutting his last album. You can bet that thing will be patched up from beginning to end.
My own daughter gave my husband one of those Posit brain things. I had to upgrade my computer for more memory and then my dh would have no part of it. So I used it a lot. I can't say I am any smarter or more alert for using it.
Maybe coach's husband will be here on the boards before long. Is she married?
I have to say that Pat Summitt is very fortunate to have so much support behind her. I hope that her staff will allow her to go out gracefully and with dignity.
My son and I watched the Glen Campbell interview as well -- we burst out laughing when he made the comment that "Witchita Lineman" was a great old song-- my husband says the same thing several times a day about every song from the past -- even the Beatles and he didn't like the Beatles!
I hope that when she starts to show “real” signs of AZ her “friends & colleagues” don’t desert her like so many of ours have. No matter what people think they know about how the disease affects people it will be a shock when it progresses to the point where they don’t understand her actions.
ttt - Have been following this since the announcement and being an avid basketball fan and TN resident. Pat Summitt has offically stepped down from her coaching position. She was diagnosed EOAD in August 2011. This is a game that has no winners, no victories and certainly no trophies. My thoughts and prayers for her and her son.
...and winner of the most absurd comment - Mickie DeMoss - who is happy for Pat Summit - arghhhh!
“Her health and well-being are most important to me,” DeMoss said. “She now can focus on doing things for Pat. She has given 38 years to UT and to women’s basketball. Now, she can do what’s best for herself, every day. I’m happy for my friend, and happy that she can begin a new chapter in her life.”
Lots on our local tv about Pat Summit. I just shake my head when they tell about her doing puzzles and all to keep her mind sharp. Sad - no one was busier than my dh. He was on two board of directors at one time also worked on a project at our church all these after retiring from a very busy job. So nothing - nothing can stop this disease. Pat Head Summit an icon in our area. Many girls from a neighboring town have good careers now - not in basketball - because they were good enough to play for Pat and gained so much from her. It is terribly sad.
Thanks to Andy for bringing this to the top. I was planning on doing it as soon as I saw the headline about her stepping down, but didn't get to it. My reaction was the same as it was the first time I heard the news almost a year ago - People don't understand Alzheimer's Disease. She's not going to win this one no matter how many crossword puzzles she does. Sorry Pat and all the millions of others - Wake up America - Alzheimer's Disease ALWAYS wins. Period.
I was also going to comment on this. Does it surprise any of us? We all knew that it was just a matter of time. I remember that she was quoted as saying that she was going to “beat this” (like she was talking about a cancer diagnosis or something). Well like I said in an earlier post here – I hope that when she starts getting worse her “friends” don't desert her like lots of us have experienced. She has the financial resources to help her get in house help,etc. I am by NO MEANS saying that her money will make it easier on her son or other relatives to emotionally cope with what is happening to her. I am just saying that a lot of us here are financially squeaking by & can't afford some of the things that might make our caregiving a little easier. (like peace of mind that we will run out of money). Anyway you look at it, it is always SAD.
She has again made the comment "We're going to beat this." Honestly, has she not been told that AD is always fatal or is she in denial about the final outcome? I wonder if she will continue to be so open about what's happening to her.
Frankly, what else does she have to hold on to? She is an intelligent woman so I am sure she knows that her disease is terminal but, I don't think I would want to do an interview and tell everyone the truth. "Well, I will slowly lose my short term memory, then my long term will come and go. I may become disagreeable and hard to deal with. I will probably argue and fight and try to run away. Sometime after that I will become incontinent of bladder and bowel, forget how to swallow and if I am not lucky, I will linger in a fetal position for years."
Sandi* you are right, BUT it might give the general public who doesn't have a clue what she WILL be up against. It ain't pretty but as they say - it is what it is!
It has to come from the media....not the affected. I surely would not have wanted my poor husband to have to verbalize what was coming down the road. I preferred he carry some notion of normalcy. Of course, I was able to be his voice. I did do an interview on our local news about him....people expressed concern, but until the "elephant" is sitting in your room, who pays attention? How much do any of us know about other diseases?
Well, I am compelled to weigh in here. It is a tragedy that she has been diagnosed with dementia, but every diagnosis of dementia is a tragedy and for most of us we are not public figures. I just have to say this-recently I was on the Alzheimers Association website and they had an article which stated keeping mentally (word games, crossword puzzles, current events) and physically active (robust exercise every day, staying physically fit and at an ideal weight) are all effective ways of preventing Alzheimers and dementia. This from the ALZ Asso!!!! They should know better. If that was the case, my husband would not have dementia today. They are part of the problem.
disturbing for those of us who know differently. the high point would be the vendors must be selling the heck out of puzzles and crosswords these days. i hate to say in a couple years how we will view ms summitts progress. it tends to progress rather quickly in earlier patients. i feel for her young son to have to go thru this. divvi
Obama to award Pat Summitt the Medal of Freedom http://content.usatoday.com/communities/theoval/post/2012/04/obama-to-award-summitt-the-medal-of-freedom/1?csp=34news
If you watch her interview from last year, to the one the other day, well, I though she seemed more confused in the original one last summer. This one, where she is stepping down, you can see her reading from her speech, and she must be on a good dose of something. Poor lady. Did you also see in the first one, how her darling son says he did not really agree with the diagnosis, that they gave her the wrong tests?
I know it sounds macabre, but I will watch what happens to her with interest. As she is a celebrity and has so much care, but, what can it do, there is nothing to reverse it? Man talk about denial going on there.
Interesting choice of words captioning the Washington Post video interview with Pat Summitt. It says "Pat Summitt discusses her bout with Alzheimer's Disease."
Bout? You have a bout with the flu. Another misleading word choice.
I did not notice that caption. Thanks for pointing it out Emily. That's crazy. I sent an e-mail to the author of the article:
Ms. Jenkins,
Please notify the person responsible for captioning the on-line photo accompanying your article - that one does not have a "bout" with Alzheimer's. A "bout" is a short period, or stretch of time. It would be appropriate to use "bout" to describe the flu.
Alzheimer's is a progressive brain disease. It is terminal. That caption is an affront to all who are stricken with Alzheimer's and the caregivers who experience the “death by a thousand cuts” of their loved one.
mary22033 - YOU GO GIRL! The person will probably read the e-mail & go, "huh?" Or perhaps it will make that person do a little research on AD.
Coco I will also watch what happens. but would it surprise you that as she declines, so does the information about her? She obviously either doesn't know or doesn't want to accept what will be happening to her, so when it does she, or whoever handles her publicity might not want the general public to know.
How Pat Summitt affected my life, and not for the better:
Long story short: my parents do not care for H. They have expressed that he is lazy and not willing to "fight". I could never really understand the strength of their conviction on this until this forum.
Father goes to Vanderbilt for follow up for his brain cancer and this has been going on for several years. Approximately (going there) coincides with H's dx. Within the last year at least they have heard much about "a coach" who has dementia and will "beat it".
So, they reason, why does H not have this motivation- why is he going to be lazy at home and content to have me be his slave (their words)? Well, now I get it, at least more than I previously did. They probably believe he is having a "bout". This is their frame of reference. It is accompanied by Father's way of dealing with his cancer which was very aggressive. They are in their late 70's and are not going to change.
During the days of H's predominant rage, I used to think "if only I could explain-whatever it was- better; he would understand."
Well, finally I realized I could be the arbiter of all time and it would not affect H at all. Likewise with my parents. Of course anyone's personal experience is important in their outlook.
I never knew who Pat Summitt was until reading this forum but I think it is irresponsible for anyone- but especially anyone who has influence- to say this can be beat or is a bout.
Abby this sounds like something people should know! That really is the pits, just adding fuel to the fire to people like your Mom and Dad, and my sister in laws and other nay sayers.
I also did not know who Pat Summit was. Like ElaineH said, she will probably drop off the radar.
I think one of the problems is Pat Summitt should of never gotten AD. She was active, healthy, busy both mind and body. She was the top winning coach in collage history of any sport, men or women. She is how we are to live our lives so we don't get AD. And now she not only got it! She got it early! I think many are thinking is she can get it anyone of us can. So everyone around her has to believe it is a bout, something she will beat. Just my two cents worth.
Exactly so blue. She is the poster child of "You (yes you) Are Vulnerable!"
Almost no one wants to look that in the face without some sort of defense up, even if just a flimsy denial of the reality of what Alzheimer's is.
When I was a kid, I dealt with my bedtime monster fears by sleeping on my belly and burying my face in my pillow so there was no chance I could see anything. I was only at risk of seeing ghosts if I looked around. Same principle applies here.
I sent an e-mail to the Washington Post ombudsman asking that the caption be corrected and suggesting:
"Perhaps the Post could officially apologize to caregivers and victims of Alzheimer's and use this as a "teachable moment," by publishing an accurate article about what is ahead for Pat Summitt."
I think that since Pat Summitt's entire life and career has revolved around sports, her "lingo" will always include "fighting", "beating it", making her life with AD into a competition. I guess it's her choice to go down fighting, but it does give a very skewed reality of AD to the general public.
I'm really tired of hearing about doing crossword puzzles, knowing a second language, etc. helping to prevent AD. I don't believe one bit of it. My DH was a structural engineer, designing concrete and steel structures to support various types of buildings. He used high level math everyday of his 38 year career. He actually hasn't lost all that much of his math ability, but his judgment and planning abilities have been very affected. The other day his mother asked him to reattach a gutter downspout which had been dislodged after a storm. I watched him look at it and say "I can't fix that". I asked him to hold my purse while I knelt down and reattached the piece. His mother was watching and I wonder what she thinks, since she doesn't believe he has AD -- admits he does have some "problem with his brain" but not AD. I was surprised to see she even asked him to do it, since she notices he is rather helpless these days.
Let's face it -- AD really scares people -- it's scaring me and my DH is not that bad yet and is considered high functioning by his neuro. Unlike Forrest Gump, I don't believe that life is like a box of chocolates, I think life is a crap shoot, and sometimes, sad to say, we just get crap!
i guess the only thing that is beneficial for the rest of us is that when ms summitts demise is rapid intense and her losses are very visual, the public will see that the words used this early on were very misinforming and not adequate. at her expense, the news will probably show her like a real AD person, and think back how quickly it all happened and be quite 'bewildered'. i also agree when she goes down she will disappear from the public view to preserve her dignity in the eyes of family/public. its why most of us chose to do the same thing. the changes are so devastatingly hard to watch.
I agree with everyone as far as the "fighting AD" being useless. As well as all the stupid crossword puzzles and using your brain. However, I believe that famous people who get AD "drop off the radar" because their families want to preserve their dignity. I completely understand that. As brutally honest as I am with my blogs, I can assure you, there are some incidents and problems with Sid that I choose not to discuss in my blogs for the sole purpose of preserving his dignity.
I don't think the families have any idea what progressing AD does to a person, and the utter shock of it sends them into a protective mode, and you never hear about the celebrity again until the death notice. My guess is that in about another year or two at most, you will not hear any more about Pat Summit until her death notice.
I applaud Farah Fawcett, who chose to show the world what cancer is really like from her own experience from diagnosis to death. It was one of the most courageouos acts I have ever seen, especially from a woman who was known for her beauty, to allow the world to see what cancer did to her. Maybe someday, a celebrity who is diagnosed with AD will bravely choose to document their decline as Farah did with cancer. Then, and only then, (IMO), will the outside world truly understand what AD is.
joan, again you hit the nail on the head. I guess it's just aggravating to hear someone say that they are going to "beat" this. But like Elaine K said, Pat's life was all about winning & beating the odds so she just transfered that to this diagnosis. I guess I can understand, because who of us ACTUALLY realized EXACTLY what we would be going through (unless we watched a parent or someone else go through this). Those of us with no prior knowledge thought that it was a memory thing just like the general public. I do agree with your last paragraaph too, but it would have to be a celebrity, because then people would take notice & listen.
In the most recent issue of Care ADvantage (the magazine of the ALZ Foundation) there was an article written by Tyler Summitt (her son).
He describes the early Sx of inability to multi-task and how after Dx they went to visit family in her ancestral home. They knew about one person (Pat’s grandmother) who had it, but then the extended family told them about so many relatives who had AD they “couldn’t keep track of them all”. Hummmmmm . . . .
Tyler describes her good health routine of diet, exercise and rest and the comfort they receive from their religious faith. He tells how after Dx they expected Pat to be asked to step down as head coach. Recent news articles say she has been named Coach Emeritus (so, I guess her income is safe?)
The one quote from the article that perhaps they really do know where the path will lead is; “For a long time my mom had been facing an invisible opponent, and finally she knew what she was up against. Though this opponent has never been beaten, I can promise you that my mom will give it the fight of its life.”
Tyler says he plans to continue with his schooling and basketball activities, outside of Tennessee and his mother’s influence.