Tag Archives: Alzheimer’s disease

medical news, national news

Nancy Reagan’s lasting legacy: Alzheimer’s awareness

gty_ladies_nancy_kb_120626_wmain

Nancy Reagan will be remembered for many noble and good things.

The former first lady — who died this past weekend at age 94 — was a champion for her husband, the 40th president of the United States. She became arguably his closest advisor and by many accounts was his best friend. She sought to protect his image and his legacy and most historians today she succeeded famously at protecting both of those things.

She also was an advocate for Alzheimer’s research and that’s what I want to focus on here.

You see, many of us have intimate knowledge of that disease.

On Nov. 5, 1994, President Reagan penned that astonishingly poignant farewell letter to the nation as he disclosed his diagnosis. He and his bride then said their “long goodbye” to each other. Nearly a decade later, President Reagan would succumb to the complications of that disease.

Read the president’s letter here.

I’ve told you at times of my own experience with the disease, having watched my mother wither away and die 32 years ago from its effects at the too-tender age of 61. Take my word for it: It ain’t pretty.

Other family members of well-known Americans have taken up the cause for Alzheimer’s research. I think most often of Maria Shriver, whose father — Sargent Shriver — was rendered helpless by the affliction before he died. Shriver has vowed to carry the fight forward.

Nancy Reagan sought to raise research funds. She lobbied Congress to do more for the families who are the actual sufferers of this malady. They are the victims, who watch their loved ones lose their cognitive skill, their memory, their ability to do simple things, such as bathe and eat.

All those things happened to her beloved husband and she fought as hard as she could until the day he died and later — until her own health deteriorated.

The world she leaves behind needs more powerful advocates who will take up the cudgel for other family members who must endure the heartbreak of Alzheimer’s disease.

Thank you, Mrs. Reagan, for the waging this noble effort.

We haven’t finished the fight just yet, but we’re a lot closer to declaring victory.

 

medical news, national news, political news

Alzheimer’s gets attention in this campaign

alzheimers

Campaign pledges too often get made — only to become ignored by the candidate who makes them.

I believe I will keep one candidate’s feet very close to the fire should the campaign turn out in this individual’s favor next year.

Hillary Rodham Clinton pledges devote $2 billion annually to fund research into finding a cure for Alzheimer’s disease.

Big deal, yes? Well, it is, even if it comes in the form of a campaign promise.

“For me, the bottom line is if we’re the kind of nation that cares for citizens and supports families,” Clinton said, “then we’ve got work to do and we need to do it better when it comes to diseases like Alzheimer’s.”

I happen to have intimate knowledge of this dreaded, miserable and merciless affliction. My mother died from it in 1984. She was 61 years of age. It robbed her of her wit, her intelligence, all of her cognitive skill, eventually her ability to speak and her ability to recognize those who loved her.

Alzheimer’s is the sixth-leading cause of death in this country and it brings great grief and pain to an increasing number of Americans.

Clinton isn’t the first politician to make this pledge. However, I do not remember the last time a politician running for president of the United States of America has made one like this.

Today’s post, though, isn’t about Clinton’s campaign promise. It’s about the disease.

I have made a vow myself to bring attention to Alzheimer’s disease whenever possible using this forum.

Another beloved member of my family also is suffering from its early onset. I pray for him daily. Also pray for his children, grandchildren and his wife, all of whom must care for him.

They aren’t alone. As Clinton found out while attending a campaign event in Iowa when she asked who in her audience had a connection with Alzheimer’s disease, it’s affecting more and more of us daily. Our population is aging and yet a cure for the disease remains elusive.

Therapies have advanced tremendously. Some of them reportedly are slowing the progress of the disease. They don’t stop it.

Clinton’s pledge has drawn the support of at least one leading Republican, former House Speaker Newt Gingrich. I would hope other politicians from both parties would endorse her promise by making similar pledges of their own.

“I’m running for president to deal with the big problems but also with these problems that keep families up at night, and this is one that really fits into the category,” Clinton said.

You got that right, Mme. Secretary.

 

local news

Still missing Mom after all these years

Mom and Dad engagement

The beautiful young woman in this picture wouldn’t want me to do this, but since she’s not around to object, I am free to do what I wish.

Her name was Mnostoula. The fellow next to her was Pete. They were my parents.

Today would be Mom’s 92nd birthday.

She’s been gone for a very long time now. Not quite 31 years to be exact.

Mom’s name was an old-country Greek name given to her by her mother, our Yiayia. She felt it was too hard to pronounce, so when she went out into the working world at a young age, she adopted the name “Mitzi.” My sisters and I never liked the nickname, but that’s how she was known.

Truth be told, her name wasn’t all that difficult to pronounce. Just understand that the “n” was silent, and you could say it just as it appeared. Our late uncle Tom — one of Dad’s brothers — called her “Mno,” but Tom would stick the “n” into the shortened version of the name and it would come out “M-no.” Mom loved hearing that.

Mom didn’t laugh out loud, as in guffaw, the way, say, Dad did. She would giggle, often at her own quips, which were quick, unexpected and always funny.

She and Dad were married for 34 years. Then tragedy struck in September 1980, when Dad died in a boating accident. He was just 59. But tragedy already had taken hold of Mom by that point. She had been diagnosed earlier that year with Alzheimer’s disease. She was just 57 at the time. But the sad fact is that she likely was exhibiting symptoms for years prior to that; we just weren’t alert enough in the late 1970s to figure it out.

Yes, she was dealt a terrible hand when that dreaded disease stole her humor, her liveliness. She would live only for another four years before passing away from Alzheimer’s-related complications.

We can’t change the past. We can think, perhaps, of how matters might have changed if fate hadn’t intervened. Mom always talked of her younger years — such as when this engagement picture was taken with Dad. She remembered how full of vim and vigor she was. Her future was bright, she would tell me. She would recall how she was a pistol.

She left us far too soon.

Wherever she is, I know she hears me.

Happy birthday, Mom. I love you.

medical news

Shriver steps into Alzheimer’s battle

It’s presumptuous, I know, to refer to yourself and a famous person in the same sentence.

But I’ll do so anyway.

I feel Maria Shriver’s pain as she engages in the fight against Alzheimer’s disease.

http://www.cnn.com/2015/03/13/opinions/shriver-wipe-out-alzheimers/index.html

This merciless killer claimed her father, the great Sargent Shriver, the way it took my own mother. It did so brutally and with extreme malice. It robbed Maria’s father of his towering intellect, just as it stole my own mother’s quick wit and intelligence.

I’m with Maria Shriver as she wages war on Alzheimer’s disease.

She notes in a CNN essay that the disease remains an unknown, despite the fact that it has claimed 5 million victims already — in the United States alone!

Her essay references a group called Wipe Out Alzheimer’s. Shriver writes: “We’re asking women to put together their own “brain trusts” in their communities — groups that will go out and do some muscular fund-raising. But equally important, these brain trusts will gather to discuss and disseminate information about what the disease is and isn’t. What are the warning signs we should look for in ourselves and our parents? What’s the difference between normal forgetfulness, dementia and Alzheimer’s disease? Can brain games or meditation slow cognitive decline? Do dietary supplements help?”

Shriver notes that women seem more inclined to get the disease than men. She also believes women hold the key to rounding up more money to pay for the research that is needed to fight this killer disease.

Shriver said: “It’s time for the narrative around Alzheimer’s to change. I remember when an HIV/AIDS diagnosis was a death sentence. I remember when cancer was a dirty word, and the prognosis was always grim. But AIDS and cancer activists are helping to take these diseases from terrifying to treatable, from hopeless to hopeful. We want to do the same with Alzheimer’s. We want to understand it, prevent it, treat it and beat it. Wipe Out Alzheimer’s is creating a global community of women activists, agitators and agents of change to do just that.”

You go, Maria Shriver. I’m betting you’ll find a lot of men ready and able to join the fight, too.

entertainment news, Uncategorized

Alzheimer's research needed a shout out, too

The Oscar ceremony/marathon produced its usual political fare from recipients Sunday night — with which I have no particular problem.

Patricia Arquette spoke out for wage equality for women; John Legend and Common offered a comment on the incarceration rate among African-Americans.

Julianne Moore had a chance to speak out for Alzheimer’s research as she accepted the Best Actress honor for her role in “Still Alice,” a film about a woman suffering from early onset of the disease that robs people of their cognitive skill; it is ultimately fatal, always.

The disease affects millions of Americans. It brings untold agony to patients’ families. I waited for Moore to offer a word about the crisis affecting so many families around the world.

It didn’t come. Too bad. She missed a great opportunity. But hey, that’s all right. Perhaps someone out there will remind her of how important this film role is to many of us who’ve experienced the heartache of Alzheimer’s disease.

I’ll be waiting to hear what she has to say in support of funding for Alzheimer’s research.

entertainment news, medical news

Yep, I watched the Oscar show … all of it!

I can’t believe I watched the who-l-l-l-l-e thing.

The Oscars. All four hours of it. I wasn’t glued to the TV set. I got up from time to time — during the acceptance speeches by the winners of, say, Best Set Design.

The draw for me was whether Bradley Cooper would get the Best Actor statue for his portrayal of the late Navy SEAL sniper Chris Kyle in “American Sniper.” I was pulling for young Bradley. He didn’t get it, but the young man who won, Eddie Redmayne, for his portrayal of the brilliant Stephen Hawking in “The Theory of Everything,” is a deserving honoree. (Disclosure time: I haven’t seen “Theory,” but from what I’ve read about his portrayal, Redmayne earned the statue.)

But here’s the award highlight of the evening, for me at least: Julianne Moore’s Best Actress award for her title-role portrayal in “Still Alice,” a college professor battling early onset of Alzheimer’s disease. (More disclosure: I haven’t yet seen this one, either; it came to Amarillo, then left — in a hurry.)

My interest in the topic of this film has been noted on this blog. My family and I have intimate knowledge of the destruction that Alzheimer’s disease brings to human beings. My mother died 31 years ago of complications from the disease and another beloved member of my family is fighting it now.

I pray for him, his wife, children and grandchildren. Their journey is fraught with heartache.

My hope is that “Still Alice” will raise the Alzheimer’s awareness level to new heights and spur researchers to redouble their efforts to find therapies and — one must always hope — a cure that eradicates this merciless killer.

 

medical news

Start shouting for Alzheimer's research

T.R. Reid, writing in the January-February AARP Bulletin, puts it succinctly and powerfully.

Alzheimer’s disease is “the most expensive disease in America” and it is “devouring federal and state health care budgets, and depleting the life savings of million of victims and their families.”

So, what are the federal and state governments doing about it? What kind of public resources are they committing to fighting this dangerous killer?

Too damn little, according to Reid.

He’s correct. That must change.

http://www.aarp.org/bulletin/

Reid, a former reporter for the Washington Post, notes that the “cost of caring for Americans with Alzheimer’s disease and other dementias has surpassed the cost of treatment for cancer patients or victims of heart disease.” Alzhiemer’s disease, says Huntington Potter, a University of Colorado neurobiologist, is “going to bankrupt Medicare and Medicaid.”

Let’s get busy, folks.

Alzheimer’s disease afflicts 5.2 million Americans — at the moment. The number is going to increase as the nation’s population continues to age. One projection puts the number of Americans suffering from the disease by 2050 at 13.8 million.

How has Alzheimer’s research funding stacked up to other deadly diseases? Reid writes the federal government has committed $5.4 billion on cancer research, $1.2 billion on heart disease and $3 billion on HIV/AIDS research. Alzheimer’s disease research will get $566 million.

My own interest in this disease is intensely personal. My mother died of complications of Alzheimer’s in 1984. She was 61 years of age when she died. Sixty-one! She’d exhibited symptoms for perhaps a decade.

The pain of watching a loved one lose their memory, their cognitive skill, their ability to take care of basic needs is beyond description. Take my word for it.

And that pain is going to spread as more Americans fall victim to this merciless killer.

Federal government estimates put the cost of Alzheimer’s care at about $214 billion annually. Medicare and Medicaid pay about $150 billion per year; the rest of the cost falls on patients and their families, according to Reid.

Why hasn’t there been an outcry for federal funding of this disease as there have been for cancer or HIV/AIDS? Part of it is stigma, Reid reports. U.S. Sen. Susan Collins, R-Maine, said, “I think the problem is that there’s still a stigma attached to Alzheimer’s and other dementias. People don’t want to talk about it. By contrast, LGBT groups have no qualms about campaigning for HIV/AIDS research. The cancer advocacy groups are extremely well-organized, vocal and politically skillful, with their Race for the Cure and everyone wearing pink for a month.”

I’ve made it my mission with this blog to call attention whenever possible to the need to boost attention to this disease. Its impact doesn’t just affect those who afflicted with it. It causes severe pain and anguish on care-givers and other loved ones.

The good news — if you want to call it such — is that some notable celebrities are beginning to put the word out there. One of them is Seth Rogen, the comic actor known most recently for his role in the controversial film “The Interview.”

“Americans whisper the word ‘Alzheimer’s’ because their government whispers the word ‘Alzheimers,'” Rogen told a Senate committee hearing in 2014. Rogen’s own interest has been fueled by his mother-in-law’s struggle with the disease. “It needs to be yelled and screamed to the point that it finally gets the attending and the funding it deserves.”

Well, young man, I’m with you. I’ll yell and scream for as long as it takes.

 

medical news, national news, political news

Two decades since Ronald Reagan said 'good bye'

This video is worth sharing today for a couple of reasons.

President Ronald Reagan spoke in his final major political appearance on Aug. 17, 1992 at the Republican National Convention in Houston’s Astrodome. I had the high honor to hear it while sitting in the press gallery.

Now, was I a huge fan of the former president? No. I never voted for him. But two decades-plus since this speech, I continue to marvel at how disarming he could be while calling down his political foes. He did so without the overt rancor we hear so much of today.

It’s instructive to listen to how he is able to make his points with strength and conviction, but without the open hostility his political heirs seems to delight in using — even while they invoke his name, as if it somehow legitimizes their vitriol.

The second reason I want to share this video is because precisely 20 years ago today President Reagan said farewell to a nation that elected him twice to the presidency. He did so in an open letter in which he proclaimed he had been diagnosed with Alzheimer’s disease, a terminal brain disorder that robs people of their cognitive skill.

He would live another decade before dying of the disease. His letter is as poignant as any I’ve ever read. Its eloquence is simple but profound.

It touched me deeply when I read it for the first time, as my own family struggled with saying goodbye to one of our loved ones, my mother, who died a decade earlier of this killer disease.

The letters is attached here:

http://www.pbs.org/wgbh/americanexperience/features/primary-resources/reagan-alzheimers/

My affection for Ronald Reagan has nothing to do with his policies. It does have to do with the courage he showed in telling the world of his affliction and, yes, the good humor he exhibited as he took his final bow on the national political stage.

I wish we had more of both — courage and self-deprecating humor — in today’s political world.

 

medical news, national news

Breakthrough in Alzheimer's research? Yes … maybe

For more than three decades I’ve had this intensely personal fascination with Alzheimer’s disease.

My mother died of complications from this horrific affliction. I’ve seen friends waste away and succumb to it, just as Mom did.

And just recently I learned that another member of my family has been diagnosed with it.

I am dreading what lies ahead on the road for this beloved family member.

Then I saw an item out of Florida that suggests a breakthrough might be at hand.

http://www.usatoday.com/story/news/nation/2014/10/30/blood-pressure-drug-alzheimers-disease/18186177/

USA Today reports that scientists believe a common blood pressure medication might hold the key to treating a “trigger” that causes the disease to begin destroying a person’s brain.

Here’s how the newspaper reported it: “Scientists at the Roskamp Institute in Sarasota, Fla., have discovered a common enzyme in all three known triggers of the disease. The enzyme is shut off by the key chemical in Nilvadipine, a blood pressure medication used overseas for the last 20 years.”

It sounds rather complicated. It’s not a cure, per se. It’s not even the discovery of a drug that arrests the advance of the disease. The findings suggest that scientists have found a way to stop one of those so-called “triggers” through the use of a common drug to treat high blood pressure.

The disease affects more than 5 million Americans. The number is going to accelerate as the Baby Boom generation — that includes my wife and me — continues to age.

One doesn’t see telethons or lots of celebrities lining up to proclaim their desire to stop this killer. It just does its dirty work and people die quietly. Yes, plenty of famous folks have been taken from us by this monstrous disease.

The news out of Sarasota, though, heartens me and I’ll continue to raise awareness of findings as they occur.

I’ll also say prayers for the researchers to stay on the hunt for more potential miracles. I can tell you that millions upon millions of American families — not to mention others around the world — are cheering them on.

 

medical news

Alzheimer's marches on and on and on

Readers of this blog know that I’ve commented several times over the years about the ravages of Alzheimer’s disease.

It struck down my mother at an early age. She was 61 when she died 30 years ago. She never got the chance to grow old, to watch her grandchildren grow up and to enjoy those so-called “golden years.”

I’ve noted with dismay that research for Alzheimer’s disease — a degenerative condition that eats away at a person’s brain — has been given the short shrift. Public attention has turned to HIV/AIDS, various forms of cancer and even chronic depression.

Why, I learned this week that Congress is planning a hearing to discuss the dangers of drowsy driving.

Drowsy driving is dangerous? Who knew?

Meanwhile, 5 million Americans are suffering from Alzheimer’s disease. Their loved ones will suffer the most. Eventually, Alzheimer’s patients lose all cognitive ability. They won’t know their names, or the names of those who love them. They tend to become incontinent. The effects of this disease are ghastly in the extreme.

The numbers are going to grow as the nation continues to age.

Well, another member of my family has announced that he has been diagnosed with early onset of this disease. I won’t reveal who it is because he doesn’t yet know that I am disclosing this news.

He said in an email that he has “a long way to go prior to ‘losing it.’ and now I’m on medication to slow the progression even further.”

This family member is very dear to my wife, our sons and to me.

My intention is to use this forum as a bully pulpit to keep calling attention to the need to step up Alzheimer’s disease research, to find a cure, perhaps a vaccine and to improve therapies that can arrest the inevitable deterioration that this disease brings upon those who suffer it.

While the media keep hyping an Ebola “crisis” that doesn’t exist in this country, they are giving scant attention to an actual crisis that is claiming the lives of Americans every day.