iPhone app iPad app Android phone app Android tablet app More

Featuring fresh takes and real-time analysis from HuffPost's signature lineup of contributors
Abigail E. Disney

GET UPDATES FROM Abigail E. Disney
 

A Commitment to Alzheimer's

Posted: 02/ 7/2012 8:40 pm

Right now, more than five million Americans are suffering from Alzheimer's Disease. And when I use the word "suffering" I know what I am talking about. Last Friday, I watched my mother take her last labored breath after years of anguish, humiliation, physical pain and mental misery. In six years I saw the disease reduce her from a vivacious, funny pain-in-my-rear-end to a drooling, incoherent puddle. It may sound cruel, but it's only the truth; every so often someone would observe that it was as though she were dissolving right before our eyes.

Today the Obama administration announced a two year commitment of $156 million to fighting Alzheimer's Disease, which is very good news. Without a significant commitment of funds and energy to research for a cure for this unspeakably cruel disease we will see the number of Alzheimer's patients balloon to a staggering 16 million by 2050. There are currently 15 million caregivers providing over 17 billion hours of unpaid care to Alzheimer's patients; that number of caregivers will need to grow to 45 million or more in the same time frame in order to care for those afflicted. And believe me, each one of those 150 billion unpaid hours of care will feel like an agonizing lifetime to those giving it.

It doesn't take much to see that the cost to our country will be vast unless we can stem the tide. In 2011 the cost of care for Alzheimer's patients was $183 billion and it will rise to over $1 trillion within the next few decades, wreaking havoc on families and a health care system that will be already shuddering under the weight of the medical demands of an aging population.

However, speaking of financial costs feels to me beside the point to me at this moment, having just watched the way this disease took my mother. I don't know how long it will take for my family to climb out from under the feeling of powerlessness and sorrow that now weighs down our hearts, but at least we were in a financial position to ensure that our mother was well cared-for right to the end. I cannot imagine the agony we would have felt if money had been an obstacle to her care, as it is for so many families. I cannot imagine what it would be like to pick my head up from my pillow one sad, sad morning, and start the work of digging out from under a financial hole made by the demands of doing the right thing by the woman who brought us into this world.

Alzheimer's is the sixth leading cause of death in the United States and it is the only disease among the top ten for which there is no way to cure, prevent or even slow its progression. The suffering of patients and caregivers promises to balloon and even overwhelm us without a steadfast commitment to finding the secret to mitigating this horrible disease.

Last year both houses of Congress unanimously passed and the president signed the National Alzheimer's Plan for Action (NAPA). This was a huge victory for Alzheimer's advocates and today's announcement is a sign that the Obama administration is serious about turning the dream of NAPA into a reality. But quite honestly, it is not enough. We cannot rest until there is coherent a national plan to coordinate and evaluate all national efforts in Alzheimer's research, clinical care, community and home-based programs as well as outcomes from those programs.

Long ago my mother loved a poem by Seamus Heaney: "History says, Don't hope on this side of the grave. But then, once in a lifetime the longed for tidal wave of justice can rise up, and hope and history rhyme. So hope for a great sea-change.... Believe that a further shore is reachable from here. Believe in miracles and cures and healing wells." That's how she taught me to live, back when she could talk. And that's how I believe we can make a better future for those millions and their loved ones who will face the prospect of this hideous diagnosis.
Commit. Believe. Love. Lead. That's what we need from you, Mr. President. Hope and history can rhyme, but only if we continue to push for treatments, for better and fairer care, and yes, even for a cure.

 
Right now, more than five million Americans are suffering from Alzheimer's Disease. And when I use the word "suffering" I know what I am talking about. Last Friday, I watched my mother take her la...
Right now, more than five million Americans are suffering from Alzheimer's Disease. And when I use the word "suffering" I know what I am talking about. Last Friday, I watched my mother take her la...
 
 
  • Comments
  • 79
  • Pending Comments
  • 0
  • View FAQ
Comments are closed for this entry
View All
Favorites
Bloggers
Recency  | 
Popularity
Page: 1 2 3  Next ›  Last »  (3 total)
photo
HUFFPOST SUPER USER
Richard Bartholomew
My micro-bio isn't empty.
12:54 PM on 02/12/2012

Fourth, note that even the interviewee indicates that the live inoculum used was forty years before Jenner’s and was nonetheless quite effective. That inoculum was likely developed without precious government involvement thereby demonstrating that cures are not dependent on government funding.

Fifth, even contemporary federal representatives are empowered to provide medical care to military personnel. What Mr Washington did for his troops was both legal and moral.

‘You are something, I guess you see a conspiracy theory around every corner, in every stethescope. I prefer reality. You have not provided any facts yet So here is the story, I have many MORE leading all the way to the 21st century. All you have is hot air and theories about who "benefits" from good medical care...’

If I see a conspiracy theory around every corner, then so do the reputable sources with which I regularly support my facts. Incidentally, here’s an excerpt from a publically traded company that profits from researching and producing smallpox vaccines:

‚In studies with Bavarian Nordic's new and innovative third-generation smallpox vaccine, IMVAMUNE® scientists from Bavarian Nordic have for the first time demonstrated a therapeutic effect of a smallpox vaccine, days after infection. With the current available first- and second-generation smallpox vaccines no evidence of a therapeutic effect has ever been shown in animal models. This discovery was recently published in the prestigious Journal of Clinical Investigation.‘
-- http://www.bavarian-nordic.com/investor/pressreleases/2008-04-10.aspx
photo
HUFFPOST SUPER USER
Richard Bartholomew
My micro-bio isn't empty.
04:02 AM on 02/12/2012

generation smallpox vaccines no evidence of a therapeutic effect has ever been shown in animal models. This discovery was recently published in the prestigious Journal of Clinical Investigation.‘
- http://www.bavarian-nordic.com/investor/pressreleases/2008-04-10.aspx

http://www.npr.org/templates/story/story.php?storyId=113543985

‘PS; Medical companies do NOT profit from curing diseases, they make money on treaments, owning treatment centers, diagnostic centers.'

That claim is demonstrably false, as the excerpt I posted above makes clear. According to Merriam-Webster’s 11th Collegiate Dictionary, a cure is, inter alia, is a kind of treatment:

'1 a : spiritual charge : CARE b : pastoral charge of a parish
2 a : recovery or relief from a disease b : something (as a drug or treatment) that cures a disease c : a course or period of treatment *take the cure for alcoholism* d : SPA 1
3 : a complete or permanent solution or remedy *seeking a cure for unemployment*
4 : a process or method of curing
–cure-less \-l*s\ adjective'
-- Merriam Webster´s Collegiate Dictionary, 2004, 11th edn. (Springfield, MA: Merriam-Webster, Inc., 2004).
photo
HUFFPOST SUPER USER
Richard Bartholomew
My micro-bio isn't empty.
03:59 AM on 02/12/2012
Miranda Wrietz wrote: 'Well 220 years of our history is great proof. And as for whether the Founders viewed Funding research and medicine. Here is a link to a story on an "inoculation hospital." center in 1774, It was private and was burned down by the Revolutionary forces. Three years later, the town voted on GOVERNMENT funded innoculation center, the town hired doctors and performed the service George Washington has his troops secretly innoculated, again government medical care.'

There are several issues to address in this connection.

First, the enfranchised town inhabitants voted to rebuild the hospital with local taxes. That’s a far cry from modern federal officials abusing federal tax funds, in flat violation of U.S. Constitution proper and reinforced by the tenth amendment, to fund for instance the NIH.

Second, all that aside, though what the town’s enfranchised voters did was not illegal, it was grossly immoral unless every single person whose tax money went towards building that hospital was in full agreement. If even one person was robbed because he disagreed, then a moral evil was committed. That the voters did it doesn’t make it right.

Third, the article never mentions how or whether the twenty sailors who torched the private hospital were punished or whether they were required to make reparations to the owners against whom they initiated force. This seems to be a matter of such complete, callous indifference to the authors that they don’t even mention it in passing.
12:14 PM on 02/08/2012
Alzheimer's rates are extremely low in individuals who stay very phyiscal active and in countries where physical activity is more common as a way of life.

What this means in American is that reseach in drugs will get large investments. The disease causing way of life will be pushed aside and the useless treatment of circulation deprived damaged brains will take of the form of drugs.

The drugs will either not work or made things much worse which will have the entended consequence for creating more sick patients profits, more research racket thief of public funds and more useless and dangerous new drugs.

The need to treat the sick society way of life that produces lifestyle originated health breakdown will not be addressed.

If there were ever a pill that could make a populaition wake up to how destructive their way of life was it would be taken right off the market.
photo
HUFFPOST SUPER USER
ms.understood
pro-choice | liberal | womanist
12:03 PM on 02/08/2012
my grandmother has dementia, which is going to develop into alzheimer's. i miss the little things about her, like her phone calls. my mom and i take care of her, and most days, she's happy and upbeat, and she recognizes us. but then on other days, she seems distant, mean, and confused. i sincerely hope that they find a cure soon. this is a terrible way to go.
photo
HUFFPOST BLOGGER
Linda Milazzo
Participatory Journalist, Educator
11:04 AM on 02/08/2012
Abigail Disney's an incredible woman who's dedicated her life to lifting those in need. It's not surprising that in her own time of sadness she's looking out for others.
photo
HUFFPOST SUPER USER
june53
Common Sense with Civility, Please!
10:30 AM on 02/08/2012
A wonderfully direct and utterly unfettered truthful 'open letter'. My own
Mother is in her 8th to 9th year of Alzheimer's Disease. She is closer
to Ms. Disney's Mother than I usually let myself admit. It is totally true
how hard it is to watch a wonderfully bright, funny and very intelligent
lady lose all her cognitive functions. It is so cruel to the person with the
disease. It is also so very cruel to the family and the caregivers in the
home who strive to make their loved one comfortable, have their own
life & dignity AND yet; recognizing the hard truth that the person we
see on a daily basis, isn't the same quick, caring, loving soul that we
learned from & loved all of our lives. We strive to "do it all" BUT that
is eventually met with the realization that we can't do it all & are doing
Mother and ourselves a dis-service because she isn't going to be her
old self or feel better; nor are we going to have the strength or emotional
fortitude to hang in there. Money is an issue, sad but very true. We are
buried in dispair AND will continue on BUT we now must have Home
Health Care assistance to allow us to continue serving Mother - as she
had always served us.

Kudos to Ms. Disney by bringing more attention and another face to the
Alzheimer's victims - patients and families, alike.
09:47 AM on 02/08/2012
The primary care givers for these patients are the real patients. Please take to time help those that are struggling with caring for someone with this disease.
photo
HUFFPOST SUPER USER
littlejohn
Househusband, former newspaper copy editor
08:54 AM on 02/08/2012
My mother is 89 and has had Alzheimer's for at least 12 years (exact date of onset was difficult to figure, because she was losing her hearing at the same time, to which we attributed her confusion). She is failing now. She hasn't known my name for 10 years and started denying she ever had a son 8 years ago. Only Alheimer's caregivers can understand me when I say I wish my mother would go ahead and die. She's a drooling vegetable now in an expensive nursing home. Personally, I would want someone to shoot me.
photo
HUFFPOST SUPER USER
wikwox
So there I was, playing the piano....
08:46 AM on 02/08/2012
My mom has Alzheimers, it's how her two sisters and her father died, it's how she'll die. I'd like to hope but it's just not going to happen, not any time soon. I admire the people working for a cure, I wish them the best. But I have to deal with what we've got and what I know will happen.
photo
HUFFPOST SUPER USER
frank day
Obama cares about all of U.S.
08:43 AM on 02/08/2012
From a practical financial perspective,

finding ways to delay, ameliorate, and cope with alzheimer's syndrome is a very important

investment to make in the face of an aging populace.
08:37 AM on 02/08/2012
I'm so sorry for your loss. I lost my mother 3 years ago to this horrible disease. What angers me is the continued perception that Alzheimer's is just this benign ailment in which our memories gradually fade away. The truth is much uglier and the nation needs to face it for what it is. It is a disease of progressive brain damage. Patients just don't lose their memories, they lose their minds. They become delusional, paranoid, sometimes violent. They can have a wide range of bizarre symptoms I suppose depending on the areas of the brain that are being damaged. There is the inability to sit still or to sleep. There is the obsession with hiding things, with collecting tissues or paper towels. The inability to feel pain, the loss of a sense of taste, or the inability of the body to regulate internal temparature. What compounds the suffering is the time it takes to progress. My mother suffered from early onset Alzheimer's and suffered a gradual deterioration over 15 years. This disease is a slow killer, requiring years and years of care before our loved one is finally released from the clutches of this horrible ugly disease. Please continue to tell the truth about this disease. It is long and ugly and heartbreaking. Whatever amount President Obama authorized should be doubled.
HUFFPOST SUPER USER
conscioushope
"There is no darkness but ignorance." Shakespeare
08:02 AM on 02/08/2012
So very sorry for your loss.


My Father has Alz. and it is a devastating disease on so many levels. Cruel at the least.
photo
HUFFPOST SUPER USER
alafonse
It's definitely a crap-shoot.
07:39 AM on 02/08/2012
I have a co-worker friend Sue, whose mother had Alzheimer's and was in a nursing home. She had reached the point where the kids were going to have to make a decision about inserting a feeding tube. Sue was against it but her two sisters were for it. At that point, Sue's mom broke a hip, and two weeks after the surgery she threw a massive blood clot and died suddenly. Sue was heartbroken, but as I told her, "Maybe God stepped in and saved you lots of agony."
I just went to see my 84-year old aunt yesterday. She's physically doing well and seems fine, mentally very alert and has good memory...just one little itsy-bitsy problem: she's hallucinating, seeing people who aren't there. Her mother, my grandmother, lived her last 10 years in a nursing home, vegetating away with no awareness of anyone. I worry that my aunt is following in my grandmother's footsteps.
It is a tragic disease, we must do more.
10:02 AM on 02/08/2012
My 70 yr husband had hallucinations too--but only when I was out of town. He's now taking Seroquel and hasn't had any hallucinations recently, but I am afraid to leave him alone for extended periods nonetheless. He's been diagnosed with mild cognitive impairment due to either alcohol toxicity (he's no longer drinking) or transient ischemic attacks, or both. He has some short term memory loss and much difficulty focusing or following multistep directions. The doctors don't know if he will get worse or not, so we plan to move 400 miles to be near our sons so I can get some help. Thankfully, we both made out living wills and advance health care directives while we were in good mental health, although moving to another state may obviate that.
photo
HUFFPOST SUPER USER
peacefuldaizy
Be the change you want to see in the world
05:32 AM on 02/08/2012
My heart goes out to any person and family struggling with this. I am certainly not proposing euthanasia so please do not interpret my message this way, BUT I also do not understand why doctors go to extreme lengths to extend the life of a patient who is in an advanced stage of Alzheimers. For instance, I worked with a woman whose mother had it and the mother was then diagnosed with cancer. They chose to pursue chemotherapy. I certainly do not judge her decision, but if my loved one were in that condition, I would choose palliative care. The poor woman probably couldn't understand what was going on as far as her treatments were concerned ... I would assume that this could be traumatic for a person with Alzheimers, not to mention highly expensive and useless. Just my own perspective.
HUFFPOST SUPER USER
conscioushope
"There is no darkness but ignorance." Shakespeare
08:04 AM on 02/08/2012
You make perfect sense, in a caring way.
photo
HUFFPOST SUPER USER
littlejohn
Househusband, former newspaper copy editor
08:57 AM on 02/08/2012
The problem with that is that there is no treatment for Alzheimer's, and it can take more than a decade to kill. My mother's doctor is withholding treatment for her other problems, including diabetes, and she is in hospice care receiving only sedatives and painkillers. She is 89 and simply won't die. I would willingly give her an overdose of morphine myself, just as I would want someone to do that for me if I were in that condition.