I am really disgusted with the lack of media coverage or public awareness of AD.
I've done the Los Angeles Memory Walk 3 times now and never once has the media covered it or even been there...WHY? It was a HUGE event, with thousands of people, they closed off the streets in downtown Los Angeles, celebrities were there, the Mayor, and over $600,000 was raised! Not a small event, but apparently not a big enough deal for the media to cover it. But as I watched the news that night, they DID cover some human rights group that marched with about 20 people, some lady that got bit by a dog, etc..
I know that before my Mom was diagnosed, I knew absolutely NOTHING about AD...had to learn it all the hard way...hands on. It seems that unless someone is touched by the disease, the public is ignorant of it.
It is becoming more and more prevalant in our society, yet it seems that no one is interested in finding a cure or educating the public. I blame the media AND the Government and just don't understand why no one cares.
Yes, I am extremely angry and disgusted. It has been an incredibly difficult year for me emotionally AND physically.
I'm sure many of you agree.
Any thoughts?

Yes Randy,

My thoughts are that we all need to rally around Bob Lee and offer any help he can use. He and Felicia are the forefront of this WAR!
Bless them both.

I believe that as the babyboomers age and medical cost associated with ALZ. become unbearable for the medical and government infrastructure,we are seeing and will see more media focus on alzheimers. Already, there is a recognition that at the current rate of diagnosis that this disease will skyrocket medical and insurance costs.

It is sad that costs will drive research, but it will.

The media only cover events that people care about. Seems to me this isn't an important topic. But - according to the Alzheimer's association, the rate of AD victims is supposed to triple in the next few years. Maybe then someone will pay attention.

Maybe everyone in your group thought someone else had contacted the media? It has been my experience, working for a non-profit charity that deals with child sexual abuse, that most people don't want to know about the scary stuff. If you don't think about it, then it doesn't happen, right? So next time there's a big memory walk for AD, make sure you're on the publicity committee and let the appropriate people know what's going on. Deluge them with info and contact everyone you can think of; the radio stations, tv stations, community programs on local cable, posters in store windows. Most newspapers will have a society page or community events section. Your mission is to find the right person and make as much noise as possible. When we all think someone else has done the work, it usually never happens. Good luck on next year.

Last night, on both national and local news, a quick snippet was made regarding AD getting to epic numbers, and how even boomers are getting it.... and how we're gonna bankrupt Medicare.
Over....... That was it.

Night before I was excited that CBS Evening news was gonna talk about teens with AD parents. Showed one teen who helped care for her Dad at home, before his placement. Her level of responsibility now is to visit him with her Mom. Then she goes home. They don't look at the kids who live it each day, from a variety of backgrounds, how their social lives/ relationships are, or look at whether THEY become isolated in some degree.
Yep! Just another short piece. Over.............
They don't really want to get into that much of it.

Surprisingly, today Martha Stewart had Fmr. Pres. Clinton on. He was talking about fundraisers for health care ~~FOR DARFUR. To my great surprise she started talking about a book she collaberated on that is for Caregivers. She talked about how important it was that Caregivers have better access to help, better resources. Especially with baby boomers being caregivers NOW, who could soon need caregivers of their own. She said this "real thick" book will be out soon. Clinton's only response, "Oh, uh huh. Yeah, that's right."

IMO He looked pretty disinterested to me, and possibly a little irritated that Martha interjected that when he only wanted to make an impression on viewers by touting his humanitarian efforts. OVERSEAS!

just received my flyer in the mail for mrmiory walk 2008. an estimated 5 million people have it now, but 78 million baby boomers are approaching the age of greatest risk...not sure if you're following Bob, Felecia, Biblecat, and Steve (can't remember the rest, sorry Steve) but their LO's have had the privilege of trying a drug called Enbrel (already used for rheumatoid arthiritis) with some amazing results. I don't think it's just the media that's afraid of it, from what I can tell, it's Amgen (who currently holds the patent on Enbrel); It's Dr. Jeffrey L. Cummings, Director UCLA Alzheimer Disease Center, whose office is right next door to where the procedure is being performed by Dr Edward Tobinick, and won't go check it out for himself to see if it's a pipe dream or what. I won't say Dr. Tobinick is afraid of Alz, but he IS making a mint on it. And if I had the money, I would gladly give it to him if I could just get a little bit of the Diva back! Walking, talking, going to the bathroom...

If only...

Randy: The media is "the telecommunications industry" -- there are many persons all over the world who fight to keep cellular antennae, high voltage powerlines and WiFi away from their neighborhoods.

While some programs have a segment now and then about cell phone concerns, the facts that should be "out there" are severely restricted.

Our brains are "electrical." When a person suffers from eplileptic seizures, a common test is the EEG. This involves placing electrodes against one's skull and applying current.

I fight every day to have vital facts released to the public about the dangers of having electric appliances, electric and gas meters, telephone equipment, etc. close to persons beds.

Check out my appeal to Dr. Marilyn Albert at the following link: http://freepage.twoday.net/stories/3038870/

We know that low level EMF/EMR (electromagnetic fields/electromagnetic radiation) is used in numerous medical applications. Bone growth is stimulated by applying low EMF's. However, there are "limits" to such use!!!

Those who sleep with electric and phone equipment close to beds, are experiencing "hazardous stimulation" that is known to be toxic. Persons are exposed for hours at a time -- not just for a certain limited time period.

The drug companies LOVE walks, races, etc. for purpose of raising money for research. They will research into infinity as long as the public doesn't demand the truth. THEY want the money and THEY will continue to dole out medication after medication -- all with serious side effects all the while encouraging the medical profession to dismiss pleas for commmon sense methods practiced by alternative practitioners.

Politicians don't "really care!!!" All the rhetoric about healthcare for all just makes me sick to my stomach!!!

You bet the media is afraid of Alzheimers!!! Their are plenty of scientists who know about the existing science re low level EMF/EMR and numerous health problems that include Leukemia, Lou Gehrig's Disease, miscarriage and brain cancer but the media chooses to deny a voice to those who can help begin to help slow the "rising tide.!!!

I have written several times to Oprah....at least 2-3 times to Montel....and many more media sources. Montel has been diagnosed with multiple sclerosis. He or his staff didn't care that he might be able to help reduce the severity of M.S. symptoms and perhaps M.S., itself, if only the public knew they shouldn't sleep close to electric and phone equipment.....

Workers comp cases have been won re chronic electrical exposures. There is a $4 mil cow case going on right now in Minnesota -- attorneys will sue re cow deaths and low milk production when cows are sick due to grounding problems and what they refer to as "stray voltage" BUT, these same attorneys won't even call a person back when requesting a referral re two wonderful toddlers (my grandsons) who were diagnosed with rare immune deficiencies. The boys "got well" after moving their beds away from electric meters. Sorry, I am repeating some of what is in my appeal to Dr. Albert. My grandsons, however, are "predisposed" to developing Leukemia, Alzheimers or several other serious illnesses -- these health problems are all linked to immune deficiency. Same re autism-spectrum disorders but researchers will just keep on researching while familes keep on walking and walking.....

I am "plenty ANGRY" on behalf of innocent victims everywhere!!! "Victims" are those who can't sleep and don't know why....they are persons with chronic asthma, chronic sinus infections, chronic ear infections, gastrointestinal problems, immune deficiencies, depression, headaches, lupus-like conditions, autism-spectrum disorders, Alzheimers-like problems, Leukemia, brain cancer, other cancers and more!!!!

I am ANGRY on behalf of every person who has suffered and is suffering the indignities of any sort of dementia whether linked to a brain injury or other explanation. Many of these individuals are also being adversely affected by sleeping close to electric and telephone equipment -- their "quality-of-life" might be significantly improved but for the fact "WE have no VOICE!!!"

If the media isn't AFRAID, what possible explanation is there for not letting those who can provide relevant facts about that which is more likely than not causing and/or exacerbating every health problem and that which might be reduced by a minimum of 51% -- if only the people were informed???

The media "carefully controls" our right to Freedom of Speech!!!" MONEY is the bottom line...... The media is AFRAID of losing money -- the reporters would lose their jobs in the same way many honest scientists have been threatened!!!

The way I see it, those who want more persons to learn about the plight of Alzheimers from patients' and/or caregivers' viewpoints, will most likely need to accomplish this by providing their own videos via U-tube, MySpace or individual websites.

The media is not going to help to delay the onset of Alzheimers, or to slow the progression of Alzheimers, or to make the public aware of the sort of help caregivers need. The media might, however, accept more money to promote drugs the side effects of which are quietly spoken while soft music plays and the people dance around....... DRUGS equal MONEY and "happiness for WHO???"

Best wishes and take care - Joanne

Randy, I agree there needs to be more coverage especially in regards to early onset,BUT, it is up to your Chapter to contact the media and make them aware of the event to get coverage. Every year for our Memory Walk they have a special cast which is usually a newscaster and we always get great info. and coverage.

There's a three-day walk for breast cancer awareness every year where I live, and it gets huge coverage. I think the reason is that the people sponsoring the walk have found "champions" at the local TV and radio stations. These "champions" have LOs with breast cancer, etc, and so it touches them deeply. They take part in the walk, and do pieces on training for it, and on participating in it.

There have got to be more newscasters who have LOs with AD than with breast cancer. So perhaps your LA Memory Walk could track some of them down and get the TV stations involved.

I would like to respond to the Clinton/Martha Stewart remark. It amazed me that this so called humanatarian "Clinton" was so disinterested. I saw this also. I do believe that we are all here to help the world and make it a better place, but we first need to take care of our country. There are little to no funds for caregivers, and instead of helping to keep these AD patients home, we end up having to lock them away from their families, because we have exhausted all funds. So, go help the children with malaria in Africa, the aids epidemic when the people could use condomns, etc., but forget the people here who have no choice in the matter. That is our government! Presidential candidates have not even addressed all of this, no one talks about it. I wrote every candidate, republican and democrat, and begged them to address AD, but I never even received a form letter. So, when we bankrupt the country, then they may address it.

I've also written all of the candidates and received no response either. It's obvious to me none of them have ever walked in these caregiver shoes.

Yesterday, March 20th, there was an article on the front page of the "Desert Today" section of the local paper in Palm SPrings that headlined: "Boomers may have to face Alzheimer's". It went on to say that roughly 18 percent of the USA's 79 million baby boomers can expect to develop Alzheimer's or some other form of dementia. (That's nearly 15 million) And that Americans are developing it at an accelerating rate.

It also noted that currently 5.2 million have the disease, and that 70% live at home where their friends and family members help them. Also, that if no cure is found, our nation will be faced with a half-million new cases in 2010 and nearly a million a year by the middle of the century.

While this article is limited in what it says, I think it should be on the front page of every newspaper in the United States. And on the desk of every legislator, state and national.

FLOWERBUYER,
I agree with you 100%! It SHOULD be on the front page of every newspaper and everyone's desk!
They just continue to sweep it all under the carpet! Guess if you look the other way, it will go away!

Yes.

Can you imagine a care-giver actually maintaining a job as a reporter? Ha.

There is however Sen Mikulski. She's from Maryland. A family member died from Alz & she's been advocating for us for quite some time now. I've seen her fight the good fight many a time on CSPAN. With budget cuts and all there hasn't been much she could do in the last 8 years.

Nearly a decade of funding cuts. How much research was stalled or lost completely?

Betsy, I've done that too. All I receive is their canned response of "issues" that face the nation, and ALZ research is not one of them. I think mental illness has such a stigma attached to it that noone is willing to go there. Breast cancer and other medical issues are so much safer to address... Someone needs to wake up soon and support this cause before the baby boomers reach retirement age and beyond. ALZ will truly be an epidemic.

As a card-carrying member of "the media," I thought I'd address some of the myths and misconceptions raised in this thread.

First, "the media" are not a monlithic beast, and newspapers, magazines, TV and radio stations and blogs do not have a unifying agenda. There is no daily memo that goes out daily telling us what to cover and what not to report on.

If you want to see more stories about Alzheimer's and dementia, make them available to your local outlet. Don't send an exclamation-point heavy, grammatically incorrect and poorly spelled e-mail demanding a story. Send an e-mail that:

*Clearly and concisely describes a story you're suggesting.

*Includes names, phone numbers and e-mail addresses of experts who will take the time to talk about the issue.

*Includes suggestions for photos, audio and video, especially people willing to be photographed and videotaped.

*Tells your outlet what the local angle is.

*Be helpful, polite and considerate.

*Don't give up. If your first idea doesn't get any coverage, try again.

>>Can you imagine a care-giver actually maintaining a job as a reporter? Ha.<<

I am a caregiver and a full-time reporter.

Any other questions about getting media coverage? Just ask. I'm on this forum every weeknight.

Kasey

Randy, You are so right. People don't care and after the week I have had trying to find a dentist for my AD stage 7 mother I can say no one cares. I was told by a young man at the National Alzheimer's Association this afternoon that "you live in the wrong state. Florida has lots of dentists that treat Alzheimers patients." That is a quote of what he told me word for word. I know that no one can be forced to go into what he called specialized dentestry to care for AD patients but they do need care. I have made approx. 250 phone calls this week and found 1 dentist in the state of NC that will see her. He is 3 hours away. What a car trip this will be and no one cares how hard it will be on her or me. I am her sole care provider and have no help. Your made. Me to. We both get to be made together and they still don't care.

I have decided to copy and paste this on every one of these message boards. So, if you've already seen this, sorry. The hopelessness you are all feeling is so very sad...especially when I've seen something that is helping some people, my beautiful Mom being one of them!

My Mom has Alzheimer's and was progressing rather rapidly. I don't know if you've seen this yet, but we started a thread on this message board in Medications/Treatments for Alzheimer's, Enbrel for Alzheimer's. My Mom has been going for the treatment for 4 weeks, and has actually improved! There is much controversy as you will see if you read our thread, but it is NOT just another "false hope". It is real, at least for my Mom and a few other on our thread and approx 30 others at Dr. Tobinick's office. It is a long thread, 8 pages now, so if you at least glance over at my posts, biblecats posts, Bob Lee's posts, and a few others you'll see what's been happening. Bob Lee's wife is only 51 and he needs help (as we all do) to get this treatment approved so that it can be covered by insurance and so that more doctor's across the nation can learn about it. Please read our questions, answers, and testimonials.

With hope for all, Felicia McColl

Islandboy26

EVERYONE is and should be afraid of Alzheimers.

Plain truth.

I don't think the media is "afraid" of Alzheimer's. Rather, I don't think that they feel it's "newsworthy" by itself. Unless some breakthrough or a new study or statistics come out, there is little more than "human interest" stories scattered about... which doesn't sell well. But give them a story about someone KILLING someone... and they'll be right there!

Kaseyj1313 is right. WE have to make it news, and the only way to do it is to get all the info the media needs so they don't have to WORK to find it. Unfortunately the old saying about "if you want something done give it to a busy person" doesn't always work. It's a rare caregiver with the free time for putting it all together AND finding the person who will broadcast it.. :/