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3/26/2009
ALZHEIMER’S: THE PERSONAL IS POLITICAL

Sometime in the next 20 years, there is a better than average chance that I will develop Alzheimer’s disease. By better than average, I mean that the average American male has a 9% chance that he will get the disease in his 3 score and 15 year life span - a percentage that rises the longer you live. Thanks to the courage of my brother Terry, who took a DNA test to discover whether he had any of the genetic markers that would make him more likely to develop Alzheimer’s and discovered the increased risk to himself, I am reasonably certain that this risk is also present in my 9 brothers and sisters.

Terry took the test for his own, personal reasons and chose to share the results with Nightline viewers last night. (you can watch the two part video here and here). Allow me to brag a bit about my little brother and say that I believe his report is one of the most extraordinary pieces of TV journalism you will see on any subject in recent memory. Informative, interesting, emotional, affecting, and very personal, his 10 minute report covers a wide range of issues from exciting scientific advances to the journey of one Alzheimer’s activist whose husband and mother suffers from the disease.

For those not familiar with Terry’s work, I would point you to his interviews with both candidate and President Obama, his trips to Iraq and Afghanistan where he became one of the few reporters to venture beyond the Green Zone to get the story, and earlier in his career, a trip to the Balkans where he told the searing story of the Serbian rape camps among other horrors. To say I am proud of what he has accomplished doesn’t describe the feelings of love and admiration I have for him and his family.

Terry also wrote a companion piece on the ABC News website that goes into excruciating detail about my mother’s battle with the disease:

My mom, Margaret Louise Moran, had 10 children and lots of grandchildren and she led a joyful and active life until she was stricken by Alzheimer’s in her mid-60s. I saw her descend, in fear and rage, into the hell of forgetting and confusion and the total loss of identity the disease brings.

The worst thing for me, I think, was that I could tell my mother knew what was happening to her; she had watched it happen to her mother. She was terrified as the disease tore apart her mind. I remember sitting with her one morning, for hours, as she said over and over to me, “I want to kill myself. I am going to kill myself. I wish I could kill myself.” For hours. My mom.

So I know the heartbreak. And I know the fear — the fear that what happened to my mom might someday happen to me. Or worse, to my daughter.

That story is repeated millions of times across America as Alzheimer’s turns from being a tragedy into an epidemic. It is estimated that the number of people who will be afflicted with the disease will increase by 50% in a few years as the baby boom generation reaches the at risk age of 65. Those who live to be 85 have a 50% chance of being diagnosed with the disease.

These figures are grim. But they simply cannot reveal the quiet desperation of Alzheimer’s caregivers, trapped in their own hellish world where a parent, or spouse, or grandparent is, for all intents and purposes, a walking corpse with no memory of the love and laughter shared over a lifetime - not a flicker of recognition, a familiar touch, a meaningful look. Instead, a blank, uncomprehending stare or, toward the end, constant, agonizing screams. Is she in terrible pain? Or are there flashes of self awareness somewhere deep in her consciousness where she recognizes her condition and wishes her ordeal to end?

This, repeated millions of times every day across the land. The pain that this disease inflicts on families is heightened by the stigma attached to it - incomprehensible while looking at it from a distance -and the wrenching decisions faced every day by loved ones who must deal with the rising economic and psychic costs of Alzheimer.

My brother Jay took care of my mother during her long goodbye. We were lucky there. Many families simply cannot afford or endure the nightmare. Jay would sit with her for hours on end, listening to her regress back to childhood, saying the same things over and over again, telling the same stories. She spoke a lot about her late husband, about World War II, about childhood friends.

Then came the anger, the lashing out, the gradual deterioration of all memory until there was nothing left; no joy, no humanity, no hope. You fight to maintain her dignity but it is a losing battle. Eventually even that is gone.

All that’s left is the screaming in the dark.

We were additionally fortunate to have found 3 angels to help care for her the last few years of her life. Three Philipino nurses who combined professional efficiency with hearts of gold and who helped relieve some of the crushing burden. Needless to say, few families are able to afford this kind of care which makes the work of the scientists to discover a cure or, more likely, develop preventative drugs all the more vital.

Terry’s report featured a couple of these scientific warriors who hold out hope for a breakthrough in the near future. So much has been discovered about the disease in the last 5 years that pharma companies and other researchers now have some specific targets to direct their efforts. This extraordinary study of 678 nuns and the effects on the brain of aging that has been going on for more than 20 years has led to many insights for Alzheimer researchers to concentrate. New tools have also been developed to peer into the brain and unlock some of its secrets.

These efforts are taking place at a time when the federal government is considering a cut in spending on Alzheimer’s research. This study (PDF) that was just released by the Alzheimer’s Association predicts that as many as 10 million baby boomers - 1 in 8 - will develop the disease in their lifetime. This presents monumental problems for our health care industry although there appears to be some hope down the road:

Dr. Gary Kennedy, director of geriatric psychiatry at Montefiore Medical Center in New York City, worries that there won’t be enough trained medical professionals to deal with the projected rise in Alzheimer’s patients.

“We are not training enough generalists or specialists in geriatrics, whether it’s medicine, psychiatry, family medicine, nursing or social work in the numbers we need to deal with people with dementia,” he said.

However, Kennedy also thinks the projected number of Alzheimer’s patients contained in the new report may be too high. Baby boomers are healthier, more active, better educated and wealthier than their parents, he noted, and this may help delay the development of the disease until the end of their natural lifespan.

Also, new medications may make Alzheimer’s manageable by slowing its progression, Kennedy said.

“Probably within the next five years we’re going to have medications that alter the course of the illness,” he said. “When that happens, you’re going to see pushing back of the disability of the illness even further. So we don’t have to cure Alzheimer’s disease, we just have to find interventions that are going to delay the disability.”

And this draft report (PDF) released by the Alzheimer’s Study Group during a Congressional hearing last week calls for a massive government research effort to increase funding for Alzheimer’s research which now stands at $640 million. Considering the fact that we spend 8 times that amount on cancer research and 5 times more on research into heart disease, an increase and not a cut in funds dedicated to wiping out this scourge should be in the offing.

What can be done? Terry has some ideas:

I believe the only way we are going to defeat Alzheimer’s is through passionate political advocacy — that’s what works in this country to mobilize public support and public resources to fight diseases. Think of the courage and commitment of those who have led the struggles against HIV/AIDS or breast cancer or other afflictions. They raised their voices, they made us listen.

But the victims of Alzheimer’s cannot speak for themselves as the disease takes them from us. They cannot march or testify or write books. And there is a sorrowful stigma attached to Alzheimer’s; it is a private ordeal, spoken of in hushed tones, shunted away in care facilities or behind closed doors where exhausted family members keep silent about the deepest indignities and worst horrors they witness and endure. And so the advocacy suffers.

There is simply too much defeatism around this disease. It is time to stand up and fight. There have been tremendous scientific advances in understanding Alzheimer’s in recent years, and there are now scores of drugs being tested to treat and even cure it. After so many years of despair, there is hope on the horizon.

Readers of this site know that making the personal the political is hardly my style. I am constantly complaining when the left does it and further, I believe that making politics into a personal quest to be detrimental to the political culture generally speaking. Personalizing politics has done a lot of damage to the national polity because it injects emotion into political debate where logic and reason should suffice.

But perhaps that has been a shortsighted attitude on my part. I suppose if I were being discriminated against because of my race, or gender, or sexual orientation, I might take that personally and my politics would almost certainly reflect that. Similarly, I take it personally that the government wishes to cut funding for Alzheimer’s research and the disease itself is not getting the attention it deserves. Considering what our family went through with my mother’s ordeal, I can hardly see it otherwise.

So in this case, the very personal is very political. And I thank Terry for showing us the way.

By: Rick Moran at 7:39 am
13 Responses to “ALZHEIMER’S: THE PERSONAL IS POLITICAL”
  1. 1
    Eddie Said:
    8:17 am 

    As long as we do not let the passion of the personal overwhelm our pragmatism and common sense, I see no reason why we cannot be effective politically in such instances.
    Your brother’s report is exceptional. Thank you for sharing for the broader benefit what has to be an often difficult subject to discuss.

  2. 2
    Kathy Said:
    8:26 am 

    Rick, I’ve been reading your blog for a while now and remembering our days back on I-Oka and Austin–the fun & the fights! I am so proud of both you and Terry for your reporting on this dreadful disease. We are losing the battle on mom’s side now–my aunt (uncle’s wife) is is the final, dreadful stages. The personal often does have to become the political, sad to say, but I am ever hopeful that as more issues touch more lives (unforutate that it may take this), we will all begin to recognize, in the words of John Donne, “No man is an island entire of itself. Every man is a piece of the continent, a part of the main. …”

  3. 3
    Shaun Mullen Said:
    8:27 am 

    Terry’s messages are inspiring as is your post. As it is, my own mother died of a related degenerative neurological disorder that makes Alzheimer’s seem almost benign by comparison.

    Your post did fail to mention one aspect of Alzheimer’s research that no doubt many of your right-wing readers object to — the use of stem cells.

  4. 4
    Eric Florack Said:
    9:10 am 

    @Rick:
    (Nod in respect)

    @Shaun;
    It’s an interesting point, but I hasten to add that they’re finding adult cells are often as or more effective.

  5. 5
    Eric Florack Said:
    9:18 am 

    Second pass:

    @Rick;

    The political is almost invariably personal. So it should be.

    As I told Margolis recently; Politics isn’t a game until itself. Politics at the individual level, ideally, is merely a reflection of our most personal value structure, and our personal moral fibre. Politics is merely a tool to represent those values to and advance those values in, whatever ‘community’ we happen to be in. There’s a lot of implication, there, that attaches itself to this and so many other issues precisely because of that relationship.

    If nothing else, your post brings home to me that we often get so wrapped up in the political game that we forget there are people’s values, and peoples lives that are at stake.

  6. 6
    funny man Said:
    9:48 am 

    I’m personally afflicted with a different neurological condition. I know the anguish and fear late at night but try not to succumb into depression. We all have our cross to bear and my sympathy for your families struggle.
    I don’t think there is anything wrong making the public arena personal. Wouldn’t it be great if we can halt or slow down the disease (and maybe mine too)!! While I’m optimistic science will eventually find a remedy, I have to live my life as it is.
    Thank you for the very moving report and my best wishes to your family.

  7. 7
    jackson1234 Said:
    10:34 am 

    Beautiful, Rick. The only disagreement is that it is “Filipino,” and in the case of women “Filipina.” So you get a 99.99 on this entry due to my anal-retention.

    I am afraid that these cuts are just the start. Whether or not health care is nationalized, there is steady progress toward rationing. Is this particular cut penny wise and pound foolish? Absolutely, but that is an immutable trait of the federal government, and for that matter, local governments.

    I lost grandparents to Alzheimer’s. I cannot imagine a more cruel disease, and if you wanted to personalize any one thing, this was it. You got my attention.

  8. 8
    michael reynolds Said:
    11:08 am 

    I wish there was a better system than a sort of unseemly competition among the advocates for various diseases. I have a hard time believing that we can’t make this all more logical, but I don’t exactly have a plan at the ready.

    Alzheimer’s is a monstrous thing. It takes death and extends it out over a decade and in the process drains the life of everyone around. Not a good death.

    By the way, a “good death” for me would almost certainly involves Liv Tyler. (Yes, with the elf ears.) Although she might have a different view.

    I’ll fire off an email to my Senators. About Alzheimer’s funding. Not the Liv Tyler thing.

  9. 9
    steveegg Said:
    11:09 am 

    Here’s hoping the entire Moran family beats the odds and none of you get Alzheimers. As for what licks diseases, a strong R&D pharmaceutical industry does a lot better than just political will.

  10. 10
    lionheart Said:
    11:43 am 

    One of the most amazing books I have ever read is called “How We Die”, by Sherwin Nuland. There is a chapter on many different diseases that lead to our deaths, and he paints a vivid, poignant picture of each (it may sound like a dry book, but it is anything but dry).

    Of the many ways to die (as described in the book), Alzheimers is the most horrific, and the one we are most powerless to stop or treat. So I agree with you Rick, that this is a cause worth fighting, and I will do whatever I can to support that fight.

    As a minimum, I’ll join Michael Reynolds in writing my Senators and Congressman.

  11. 11
    jackson1234 Said:
    1:28 pm 

    I agree with everything Michael Reynolds wrote, as well. I have chronic RA and have caught myself getting angry at the amounts spent on AIDS and other less common but more “glamorous” diseases. The competition is indeed unseemly.

  12. 12
    Surabaya Stew Said:
    5:18 am 

    “I suppose if I were being discriminated against because of my race, or gender, or sexual orientation, I might take that personally and my politics would almost certainly reflect that. Similarly, I take it personally that the government wishes to cut funding for Alzheimer’s research and the disease itself is not getting the attention it deserves.”

    Rick, your (political)honesty and (personal)openness here is illuminating and heartbreaking to read. Thank you for sharing this with us.

  13. 13
    And Rightly So! » Blog Archive » Saturday AM Links & News Pinged With:
    7:19 am 

    [...] Rick Moran on Alzheimer’s Disease: It’s up front and politically personal. [...]

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