I was reading the thread on Educating Physicians, (thank you, Mary for the ttt) and someone mentioned when years ago, Mary Tyler Moore went public with her diabetes diagnosis. I have long thought that there should be a celebrity, someone with an AD diagnosis, who is willing to speak publicly about the disease and its effects on their life. Like Christopher Reeve for spinal chord injuries or Michael J. Fox for Parkinsons, a celebrity advocate would draw attention and possibly funding to the cause. I realize AD still has a stigma that these other diseases don't; and I know from my own experience of when Steve and I have spoken publicly that it's an incredibly difficult thing to do. Our society is so celebrity oriented, I just think it would have a much greater impact than when we "regular people" speak out. For example, it was just in the news that Peter Falk (Columbo) has AD. It sure would have been nice if he had been able to do interviews about it when it was early stage, or go to Capitol Hill and testify for additional funding, etc. Has anyone else thought about this?
Just off the top of my head, I think the problem is 2 fold. First, Dx doesn't happen until most patients are well into stage 5 and the impairment it definable. They and their families need to assimilate and adjust before they can "come out". This can take time. Time during which their LO will be progressing. Also, there is still such a negative response to be overcome, that is extremely daunting. This like a "which came first..." kind of deal. Also, many families would, I think be unwilling to expose their LO to public scrutiny when they become more severely affected. As an exapmple, the Reagans were open about Ronald's Alz, yet they allowed only slight public contact after revealing it, and then none and he grew worse. Could it be done? It would take an extraordinary family to take this on.
I can remember when Charlton Heston announced in 2002 that he had Alzheimers. I would think that it would be difficult for anyone who has Alzheimers, no matter how articulate they are, to be a spokesperson for the disease.
Pretty obviously the patient can't be the Celebrity Spokesperson. That person needs to be the primary caregiver. And there have already been several of them out there. Reagan's son was one, Rita Hayworth's daughter did quite a bit of it after her mother died.
I think that sometimes the person who looks like the Celebrity Spokesperson is just the person who went public at exactly the right time. For example, most of the really heavy breast cancer stuff we are seeing now was jump started by someone who's sister had the disease and died from it, the whole Lemonade stand stuff for children's cancer was started by a little girl who has since died and is being continued by her parents, child abduction awareness was begun by a very ordinary man who just couldn't let the rest of the missing children go. In every case it took someone who had a lot of energy and just wouldn't let the subject go.
The same thing is going to happen for dementia. And the person who probably will jump start general public awareness is Joan or someone very like her that we don't yet know. Not a celebrity. Just someone who probably won't let it all go.
David Hyde Pierce an actor who has appeared on Frasier and also on Broadway has done a lot of speaking on AD. His father and grandfather both had it. He sometimes appears on PBS specials on AD. One problem I see is that people are very uncomfortable talking about AD. When my DH tell people he has AD they very often respond, no, you don't.
And there's Leeza Gibbons, whose mother recently died of AD -- she's been something of a spokesperson and activist -- establishing a foundation and several Leeza'a Place support facilities, which you could read about at www.leezasplace.org/index2.html . We have a pretty strong AD advocacy group here in our county (Brevard Alzheimer's Foundation) started by a high-energy retired Navy Commander -- he does weekly newspaper columns, radio broadcasts, etc. and has established three Joe's Club adult daycare centers.
Maybe Joan or someone could try to enlist an army of some millions of grassroots supporters via the Internet like T.Boone Pickens has been doing for his Pickens Plan for alternative energy?
While hearing David Hyde Pierce or Leeza Gibbons speak is compelling, it isn't the same as hearing from someone who actually has the disease. Steve and I participated in an "Alzheimer's Summit" that was held in D. C. in 2007. It was put together by the consulting firm Booz Allen Hamilton, and had the top people in government and the private sector attended. I spoke as a caregiver; an amazing guy named Bill Bridgwater, who has dementia and is an Alzheimer's advocate, gave the keynote address. I cannot tell you the effect it had--an intelligent, successful and articulate man in his 40's discussing the need for better treatments and an eventual cure. Now that earlier diagnosis is a priority and is happening (in some cases) perhaps there will be more people who can do this. I recall Reagan and Heston making speeches that they had the disease; I don't recall any advocacy activities beyond that. Alzheimer's research funding had been cut several years ago because of the Iraq war; I imagine that the subsequent economic disasters will only result in further cuts. This cause needs to become the "squeaky wheel", but the problem is, those of us most impacted (patients and caregivers) are either unable to make noise or so overburdened by our day to day lives, we don't have time/energy to do it. That's why I think a celebrity with the disease could make an impact--but I realize it may not be practical to expect this of most people.
I heard Reagan's son on radio several times. I saw Rita Hayworth's daughter on 60 minutes 20 years ago or more, and on other places as well. So basically what you see and what you remember has a lot to do with what you noticed. And if the time isn't right, you won't notice what is already out there.
And frankly, none of the really big grass roots disease awareness groups that I am aware of were started by people with the disease. They were all started by family members of someone who died from the disease.
I think it is possible that THIS is the time for dementia of all kinds.
I'll get to the celebrity part, but first I wanted to say that now that AD is being diagnosed earlier than ever before, people with the disease ARE speaking out and advocating for what THEY feel they need. I would encourage those of you who are interested to log onto my home page - www.thealzheimerspouse.com - and click on the left side topic - EOAD. There are videos and articles about and by people in early stages of AD who have been willing and able to speak about the disease's effects on them and their loved ones.
Some of these people are members of this website, and went to Washington DC last year to particpate in the AD Public Policy Forum. The Forum is in March this year, and the first afternoon is set aside for people with dementia to speak and advocate. Anyone interested in attending or just reading about it can copy and paste this link:http://www.alz.org/publicpolicyforum/09/register.asp If you are interested in being a delegate, contact your local Alzheimer's Association. To read about my experience at the DC Forum last year - log onto the home page - www.thealzheimerspouse.com- and scroll down to the DC Forum topic on the left side.
I agree that AD could use a celebrity spokesperson - the closest we have is Richard Taylor, PH.D - His latest article is still on my home page. For other of his insights, click on the "previous blog" section and scroll through for blogs about him. Or copy and paste this link for his book - Alzheimer's From the Inside Out -http://astore.amazon.com/wwwthealzheim-20/detail/1932529233
Believe me, as Marilyn said, it is very difficult to go public, and my guess is that preserving their public image is more important to celebrities and their families than allowing the public to view their downward spiral into AD. They seem okay with announcing the diagnosis, and then announcing the death, but nothing in between. AD needs a brave celebrity in the early stages to come forward and help raise awareness and funds.
I believe the Alz Assn was started by two women who were CG's for their husbands, it was originally meant to support CG's, but as it grew, its emphasis changed. Maureen Reagan did a lot of publicity for AD, but unfortunately died & the Reagans founded the Ronald & Nancy Regan Rsch Ctr for AD, (I think a separate part of the Alz Assn in Chicago); son Michael founded the Reagan Legacy Fnd, multi-interests, including AD. Shortly after it was announced that Reagan had AD, photos of him would appear of his walking in a nearby Los Angeles park, smiling & noding, taking pix with the public, dressed beautifully, and I often thought, "If that's what the public thinks AD is....." Sure, he'd be OK for a bit with others, but at home, behind closed doors, it was an all too familiar story--I don't blame the family for keeping that hidden, altho there may well be private videos for history. But you can't get anyone more prominent people than the Reagans. I made a video of my DH--probably stage 6, & people would walk out of the room, ask me to turn it off. They could not bear it, I, of course lived with it. As already expressed, AD patients can be spokesmen for only a limited time, then others take over and there are plenty of celebrity activists. But AD must compete with dozens of other diseases and equally tragic conditions, and only a limited amt of money is available--private or govt, war or peace, there just isn't enough money for everything & there won't be any more money if universal health care is adopted. It will cost more in taxes & care & meds will be rationed, especially for the elderly, as it is already in other countries. I am elderly, birthday this week, and I am happy to be here, but I know we seniors take a disproportinate amt of care & money, just wait as the boomers continue to age. Private & public resch, including drug cos is going on all over the world for every disease, AD among them. But any problem with the brain & odd behavior is still kept hidden by most people. Oh, sure I knew abt Rita Haywworth, but until my husband got AD, it was just not on my radar screen, there was no way it was going to happen to any of us. Unfortunately, I think most still feel that way unless it's familial. I admire Joan, Jacqueline Marcell & all the others who work, write & lecture tirelessly on behalf of their LO's & AD. But these dementias are just not yet front & center w/the public. Sadly enough, I think they will be within 10 or 15 years.
Going public about Steve's illness was very painful for me--testifying before a Senate subcommittee about it was the hardest thing I've ever done in my life. It affected me for days before and days after. And the loss of privacy was certainly something I considered. But I felt grateful to be asked, and compelled to do it. One of the reasons I think a celebrity would be effective is that we feel we "know" them to a degree. It's one thing to hear the numbers about the millions of nameless, faceless people who are stricken--quite another to have someone you love or even someone whose name you recognize. And I also agree that with us boomers reaching the age when AD can start--it's going to shake things up.
I think what we really need is something in the pattern of the Susan G. Colman foundation that sets up walks, and big media events all over the country multiple times a year. They have the advantage of having survivors, but most of the people who are "walking" are doing it for "my wife, my mother, my sister".
I know it is hard to believe, but before a few famous people came forward no one talked about breast cancer, but even after they had come forward, it took the sister of a victim who didn't survive, to help the world understand what people with the disease needed. That was in addition to funding drug research, which they also do.
A sick child is appealing. A woman with breast cancer can still be attractive. A person with a blank stare and wet pants isn't going to get much positive attention. It is my feeling that it is up to we caregivers who need to make known the need for research and understanding.
Did anyone mention retired Supreme Court Justice Sandra Day O'Connor? Her husband has AD. I've heard the story that he developed a close relationship (fell in love) with another resident of his care facility.
I believe Betty Ford went public w/breast cancer & that helped lessen the shame. I remember as a child no one said 'cancer' they whispered 'c.' Today it is, thankfully, better controlled, more survive and we can look forward to that being the case w/AD. I think Betty Ford also started an alcohhol & addiction clinic in Palm Springs. Like O'Connor's husband, my DH also had a 'sweetie' in the care facility. He introduced her to everyone as 'my wife, Betty.' But I think Bludaze has a point. In the beginning, those w/AD look & act quite normal, what's the big deal. But as time goes on, the blank stare, etc turns almost everyone away. We all have to just keep doing our best to educate others, including, sadly, many in the medical field. I also agree w/Marilyn, it took me a long, long time to be able to talk about my DH and even longer to write about it. I was concerned about his privacy, etc, but talking w/our children, we all agreed he'd be in accord. And, then, too, when I was in the throes of CGing, I was in no position to join in any crusade. But the day will come--I'm sure of that.
Starling--You are right, that Susan G. Komen organization is incredible! They are everywhere you look with fundraising and their pink breast cancer theme. Even in Target, there is a line of pink housewares--maybe by KitchenAid--a mixer and all kinds of cooking stuff that they get a percentage of. I've thought for a while that the Alz Assn should copy their model.
I do give the National Alz Assn credit for trying to publicize EOAD and having an advisory board that is made up of young onset, early stage people. i believe Richard Taylor was in the original group and they do try to have media opportunities where the members are interviewed and talk about living with the disease.
Bluedaze--your comments are right on the mark. The problem is, how much can we do as advocates, when we have our 24/7 caregiving job that takes priority over everything?
marilyninMD-I take every opportunity with every new person I meet to educate about dementia and the needs of caregivers. I was at a club meeting this evening and spoke to the guest speaker about the needs of the AD community. The purpose of the meeting was unrelated to dementia. I will say this-no one goes running when they see me comming. I feel I have really made in impact because people are not as afraid to ask how my husband is doing.
I do that too, but I don't want to be labelled "that woman who always talks about depressing stuff". So with my good friends, of course, I educate and let my hair down. But with people I don't know well or have just met, I tone it down. I'm trying not to let go of other interests/conversations and be overtaken by AD. It's hard, when AD has overtaken DH's and my life.
Almost my entire world revolves around AD. The forums I participate in are my main contacts, except for two sisters that I speak with fairly often, and my son and his family. So, there is ne'er a conversation I have where AD isn't at least in part a subject
I think my point about the Susan G. Koman foundation is that it doesn't matter what the patient looks like. Their walks are full of people walking for a dead family member. Let me assure you, that dead family member doesn't look "appealing." The Koman foundation does have survivors, and them spend a lot of energy highlighting them because it helps the new patients to know you can survive.
I don't know if the Lemonade Stand is purely local, but the child who "started" it died several years ago from a childhood cancer. They don't have survivors to show off at this point, and they NEVER use the sick children, or show them. Just parents who are hurting and who are in the organization to help stop the hurting.
I didn't know that the Alzheimer's Associations original focus was the caregivers, but it doesn't surprise me to hear that because they spend so much of their energy on caregivers. Maybe they need to highlight the caregivers who survived, because this is one disease that kills caregivers on a regular basis.
I personally have felt that it would be good if some scrapbooking magazine or national store would take up AD as their cause. It seems a perfect match. Perhaps a percentage of sales on a particular day could be donated to research. It seems like a perfect match - helping everyone keep memories for the future.
I brought this old thread back because of seeing Maria Shriver enter the AD advocacy world more openly. Several years ago she wrote a book for kids regarding a granddad's AD--I believe Joan had/has it on the home page? I noticed she testified before Congress in March during the Alz Assn's Public Policy Forum, and her upcoming documentary on HBO, the Alzheimer's Project, has been getting press. It seems as if she is becoming more involved in the cause--I wish her buddy Oprah would do a show on the documentary before it screens!
I sent an e-mail to the Oprah show suggesting a show dealing with caregiver's of dementia spouses. I mentioned how this effects spouses, that it is not always an older person, as most think of when they think of dementia. I sent this a couple weeks ago, I have not heard anything, but I thought it was worth a try.
Yes, I remember when the word "cancer" was whispered. I was in high school around 1948 when a friend said that her grandmother had cancer (the word was whispered). I went home and asked my mother what cencer was and she angrily answered, "Where did you hear that word?" Thank goodness Alzheimer's can now be talked about.
My mom had TB when I was growing up. It was seldom mentioned by name. I was to tell friends that she had "a nervous breakdown." Why that was more acceptable than TB, I have no idea except that TB was considered a Disease Of The Lower Classes, and she was solidly middle-class..
Kadee Please give us Oprah's email, I think we should ALL EMAIL HER! Dementia is something that everyone knows a bit about and I believe that like the war, everyone knows someone one who is affected in some way. Lets go Demented Warrier's (How's that for a name for us caregiver's, remember Caregiver Dementia?)
I found this on Oprah's website. There's a list of reasons you might contact someone connected to the show. One of them is to suggest a topic for a show. I'm going to suggest a series of three shows: one with people from the Alzheimer's Association talking about facts and figures, kinds of dementia, and support for patients and caregivers; one with people with early dementia (any ideas of who could do this), and one with caregivers (Maria Shriver?, Sandra Day-O'Connor?, Joan,and/or someone else?). With enough guests the last one could have a segment on caring for a parent and a segment on caring for a spouse.
There was a page in this weekend's New York Times Sunday Magazine about Maria Shriver. She is the co-producer of the HBO program about Alzheimer's. She was asked why she isn't involved (or actually running) a national Alzheimer's organization. She told the interviewer that she has a family (husband, children, and 2 sick parents) who need her, and that the State of California also takes up quite a lot of her time since her husband is the governor there.
As a caregiver myself, I understand where she is coming from.
I met Maria Shriver in DC and spoke with her. I told her about this website and gave her my card. She was absolutely as gracious and kind as could be. Because I have been so wrapped up in the pain and drama of my own situation since I returned from DC, I have not followed up with her, but I intend to.
As for Oprah, good luck. I wrote somewhere in another thread that I contacted her when I first launched the website. She has gatekeepers stronger than those at the White House, and from what I have been told, they let nothing through to her unless it's relentless - as in everyone writes every day and bombards them, which may just p......s them off, and you'll never get through. Or you have a story that is so newworthy it's been all over the news. I never heard from them after I wrote. Also, with both Oprah's show AND Dr. Phil, when you suggest a show idea, you have to check off an agreement on the computer that basically says - they can steal your idea, do the show, and give you no credit or mention.
It may be helpful to e-mail the demographics of this website so Oprah's gatekeepers realize it would be relevant to their audience who is primarily female and split between ages 35-50 & 50+.
In 1999, a local TV broadcaster's FIL had AD & he did a segment about my DH. A well-establlished producer contacted us to do a TV movie, even had possible casting & a treatment. Not a single channel would do it. Essentially she was told that the only people interested in AD are those who are personally involved in it. Financially, it's a big loser. I think that's essentially true, altho "Away from Her" was well received, but not so much by the general public. I sent the info & video of us on TV to Oprah--big nothing. However, it might be different now as more & more people are aware & the boomers are involved either caring for parents or getting it themselves. There are drugs now that could be advertisers--it could be different. It's worth a try. AD has always had prominent people involved starting w/Princess Jasmine. The Regans have established an institute connectead w/the Alz Assn & his daughter was very active before she died. Things will have to change just because the elephant in the room keeps on growing.
I remember years ago when Dr Phil was appearing on Oprah, before his own show, they did a show on AD. I remember it cause they had MRI's (I think) of a healthy brain and an AD brain. They had four sisters from Connecticut I think who had familial AD and wanted to know their future. I think 3 of the 4 sisters showed signs of the beginning of AD. Maybe by approaching with wanting a follow-up to see how they are would work??? Or email Dr Oz about the idea and he might get through to her???
I think the program would be very good to have but like on the above post, I doubt the interest would be there from the general public - at this time. People just do not want to think about AD and as long as it is not in their life they don't have to. It would take a very ambitious and well known person to pull it off and of course Ophra and Dr. Oz. would be the best ones I know.
Lizbeth is on the right track. No one cares about a disease of the "elderly". I wrote extensively about this when I returned from DC - check the DC side section on the left side of the home page.
It's only when people hear that it strikes a "younger" age group - particularly when they hear 50's - is when their interest peaks. They worry, of course, that they or their spouse could get it. That's why Tony, Trish, and so many other advocates are trying to get the word out about EOAD. If everyone here wrote to Oprah and Dr. Oz about this website and all of the EOAD cases, it might make a difference. Nothing to lose by trying.
>>>CBS Sportcaster Jim Nantz gets it. He wrote a book and in it he shares very personal experiences in the caregiving>>
A big hand to all here who do it alone. According to the article he had a fulltime caregiver for his dad and yet they were exhausted. so for all here that do it alone, you get double credit. Wish there was a more.
I am hoping that Oprah will have Maria Shriver on to discuss AD, at some point. During the 1970's, they both worked at one of our local TV stations in Baltimore (WJZ) and became friends. They have remained so over the years--she has had Maria on before, perhaps to plug her book, but not specifically about AD, as I remember. Oprah has done two shows on AD that I know about--one in the 1980's with Dr. Whitehouse, who wrote the book "The Myth of Alzheimers"--you can see some of it, I think on his website. The other was much more recent, with Leeza Gibbons, and perhaps the family mentioned above. Not only should Oprah do a show on dementia caregiving by spouses, including Joan, but the whole audience should be made up of us!!!!!!!!!!!!!! Kind of like when she had the audience of teachers and she gave them all a car--all we are asking for is attention to the disease and the havoc creates in the lives of those who deal with it (well, I guess we wouldn't turn down cars, would we?) Today Oprah mentioned that Dr. Oz will have his own show starting in Sept., perhaps he will cover it.
I went to oprah.com and did a search for Alzheimer. The articles they came up with, one on EOAD, really said nothing more than eat right, exercise your body and mind to lower your chances of developing it. We all know that is not true. In the VA Alzheimer unit where my FIL is are men from every walk of life - from the highly educated and intellect to the ditch digger and undereducated. We have that here too - and we are proof that those mean nothing when it comes to this disease. Bringing Reagan back up - he exercised, ate healthy (including broccoli), used his mind constantly, etc. and it didn't help him. I just wish they would be honest and say: nothing helps. Those who will get AD will get no matter what precautions you take.
Sorry it just irks me when they keep saying eat healthy, exercise, and use your brain.
A cashier in the drugstore told me she didn't use aluminum foil or aluminum cookware anymore because they think it causes AD. She said AD runs in her family and she is being very careful. Where did she hear that?
That was one of the first causes they came out with. I remember the big push for people to not use deodorant because of the aluminum in it. The theory was that the aluminum was absorbed into our system, transported to the brain where it did the damage. Didn't stop people and the industry didn't come up with anything else that would keep people 'dry'.
They claim there isn't but I limit the exposure to foil. Like I usually don't wrap food directly in foil. I keep a sheet of foil in my oven and set the baked potatos on the foil, etc.
I once knew a woman who wrapped herself in tin foil because she believed that electronic radiation from phones, microwaves, tv and radio caused dementia...She would actually come into work wrapped in foil under her clothes. She did make some strange noises when she moved, but she was convinced that aluminum foil protected her.
Charlotte--This is what I've heard (from a AD expert--research physician). Eating right, exercising, using your mind--will not prevent one from getting AD if they are predisposed to it. However, it is felt in the medical community that it can postpone the onset until later in life. I believe that this is the case for my husband. His Dad showed the first signs of dementia in his 40's--Steve didn't until almost 60. A major difference were their lifestyles--his Dad smoked, didn't exercise, didn't have a healthy diet (by today's standards), had lots of stress, etc. Steve was the opposite in all those areas, and I think it resulted in 20 additional healthy years for him. However, many articles are misleading and sound as if the disease can be prevented based on good lifestyle choices, which we know is not true.
marilyninMD, I think that's also true for heart disease and a lot of other diseases. A good healthy lifestyle may delay but not prevent them. My friend has a tee shirt that says "Eat right, Exercise and die anyway".
Phranque, you must be kidding about the aluminum foil.