‘Shriver Report’ outlines much Alzheimer’s work to be done

October 18, 2010

It was June 12, 2003 when Sargent Shriver typed a letter to his friends, telling of his Alzheimer’s diagnosis. “I look forward to being in touch with as many of you as possible. If names are slow to come to me, please forgive me. But if at any moment, I seem content with things as they are, don’t leave the room,” he wrote. “Remind me of the great times we’ve had and the great work waiting to be done.”

Plenty of work remains to be done, and his daughter, Maria Shriver is leading the charge.

The journalist, author and First Lady of California says she grieves every time she visits her father, and she says she has fears about whether she will develop Alzheimer’s. She pours herself into award-winning books and television projects about the disease.  ”I deal with my fear that way, and a certain amount of denial,” she said during a conference call for bloggers on Oct. 18.

Shriver and Angela Geiger, chief strategy officer at the Alzheimer’s Association, are promoting the release of “The Shriver Report: A Woman’s Nation Takes on Alzheimers. It gives background on the disease and where we are with our understanding, and includes a variety of essays from famous and regular people, amid all of the grim statistics.

Some 5.3 million Americans have the disease, and by 2050, 16 million will–and those figures don’t include related dementias. While the average annual cost for caring for someone with Alzheimer’s is $57,000, 72 percent of Americans admit they haven’t considered what their care options would be if they were to develop the disease.

America will spend about $6 billion on cancer research and about $4 billion on cardiovascular research in 2011, but just $500 million on Alzheimer’s research. The first wave of Baby Boomers start turning 65 in 2011, and the percentage of our population diagnosed with Alzheimer’s will begin to grow substantially.

“We are facing a tsunami, and we have no national policy for dealing with Alzheimer’s,” Shriver says. “It will be, I believe, in large part up to the Baby Boomer women to push for the advancements with this disease.”

Read my previous post about “The Shriver Report.”

Order your own copy of “The Shriver Report.”

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Syracuse Memory Walk brings in $123,300 for Alzheimer’s care, support and research

October 2, 2010

This year’s Memory Walk, for which I was honorary chair, attracted nearly 1,000 people to Long Branch Park in Liverpool and raised a record-breaking $123,300. Presented by Loretto, the walk raises money to pay for Alzheimer’s care, support and research.

I appreciate all of the donations my DementiAwareness team collected–$1,025 as of the day of the event. You can continue to make donations through Nov. 1.

We had a crisp, bright fall morning for the walk. And Central New York’s best donuts, supplied by Tim Horton’s. What could have been better?

Well, of course, if there were no need for a Memory Walk to begin with, that would be great. But that’s not the case. Those of us whose lives have been touched (slammed?) by Alzheimer’s disease or another dementia have heard the grim statistics: 5.3 million Americans have Alzheimer’s, and that number will grow considerably as the Baby Boomers start turning 65 next year. (That number does not include other dementias, such as frontotemporal lobe dementia, which has my father in its grip.) Also, that there are no effective treatments or preventive therapies.

The Memory Walk was not a time to dwell on the negatives, though. It was a time for us to come together, gather support, realize we are not alone.

My friend who lost her mother to Alzheimer’s earlier this year was there walking, wearing her mother’s purple fleece jacket. And I saw Tiffany Riihinen and her mother, P.J. Kimmerly, who has the disease; they allowed me to share their story in The Post-Standard a few weeks ago. And as we passed each other on the walk, a man I had not met reached for me, and we hugged. “I’m walking in honor of your dad and my mom,” he said, hurrying off in one direction as I headed in the other. The encounter caught me off guard. For several seconds, I walked in a haze, savoring that fleeting but solid connection with an otherwise stranger, and thinking about my Dad.

He is like so many others’ loved ones, so hobbled by dementia that walking has been replaced with shuffling, and wandering. My Dad’s heart remains strong as his mind fails. He no longer knows me, or his grandkids, or his wife sometimes. We don’t know what memories he has, and we’ve learned we cannot influence that. He has bad days, and days that aren’t so bad, and we’ve learned we cannot influence that much, either. But we can still honor him–and that’s what we did today.

Read what I said before the walk.

Make a donation.

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Why walk the Alzheimer’s Association Memory Walk?

October 2, 2010

Here’s what I said before the Memory Walk, held Oct. 2 in Liverpool, NY:

This is not a race to see who can finish first.

Just like the disease of Alzheimer’s and related dementias, some of us will take longer than others to complete this Memory Walk.

We will find parts of the trail that are rough, and some where it is smooth; where the trail twists and turns, and some where it is straight.

We will keep our heads held high.

We will keep placing one foot in front of the other, at our own pace.

Sometimes we may lean on others for help.

We will accept that just when we think we have a nice rhythm going, something is liable to change our plans.

We may cry.

We may laugh.

We may take a rest.

We will learn to cope however we can. This may be all we can do, for now.

But we will do the best we can to keep moving forward.

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Newspaper editorial supports Alzheimer’s advances

August 9, 2010


My newspaper editorialized today about the promising new developments to diagnose and treat Alzheimer’s disease. “Help in Sight” mentions new guidelines to diagnose dementia based on tests, including MRI scans, which would reveal certain brain changes–and help doctors diagnose the disease earlier and more definitively. It also explains TrialMatch, the new service linking patients with studies related to dementia.

“More clear diagnosis, better treatment and an eventual cure would offer much-needed relief to patients and their families. But better treatment would have a financial benefit, too,” the newspaper says, outlining how an Alzheimer’s treatment breakthrough by 2015 that slows the disease’s progression by five years could cut annual Medicare costs by $20 billion, and save Medicaid $14 billion in 2020 .

Read the editorial yourself.

Read the new guidelines for diagnosis.

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More studies showing exercise can help stave off dementia, Alzheimer’s

July 14, 2010

Encouraging research being shared at the International Conference on Alzheimer’s Disease in Honolulu this week shows that exercise may be a powerful antidote to cognitive decline in Alzheimer’s and other dementias.

Physical activity has long been related to cognitive decline, through several long-term epidemiological studies, but up until now, published research has not been consistent, and several large studies failed to show an association. Most of the studies followed participants for fewer than six years and/or lacked substantial follow-up. In fact, a panel convened by the National Institutes of Health recently reported that no proof exists for ways of preventing dementia.

Researchers have yearned for a long-term study of people within the age brackets at higher risk for developing Alzheimer’s, in order to show a true relationship between exercise and cognitive decline. The Framingham Study, a population-based study that has followed participants residing in the town of Framingham, Massachusetts since 1948 for cardiovascular risk factors, is one such study, and it is now also tracking cognitive performance.

In work presented in Honolulu, Dr. Zaldy Tan of Boston’s Brigham and Women’s Hospital and Harvard Medical School, and colleagues, estimated the levels of 24-hour physical activity of more than 1,200 elderly participants from the Framingham Study. They included 742 females, within five years of age 76 in 1986 and 1987, and followed them for the development of dementia. They divided the participants into five groups based on level of physical activity, from lowest (Q1) to highest (Q5).

Over two decades of follow-up, 242 of the women developed dementia, including 193 with Alzheimer’s. The researchers found that participants who performed moderate to heavy levels of physical activity had about a 40 percent lower risk of developing any type of dementia. Further, people who reported the lowest levels of physical activity were 45 percent more likely to develop any type of dementia compared to those who reported higher levels of activity.

“This is the first study to follow a large group of individuals for this long a period of time,” Tan says in a news release. “It suggests that lowering the risk for dementia may be one additional benefit of maintaining at least moderate physical activity, even into the eighth decade of life.”

2 Comments | Alzheimer's, alzheimer's association, dementia, early-onset Alzheiemer's, frontotemporal, FTD, late-onset Alzheimer's, Lewy body, prevention, research, Uncategorized | Permalink
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Read news from Honolulu at the Alzheimer’s conference

July 13, 2010

If you couldn’t make it to Honolulu, (darn! me neither!) you can still stay up-to-date with what is happeneing at the International Conference on Alzheimer’s Disease by reading the daily news releases. The web address is www.alz.org/icad.

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Donate for Memory Walk through DementiAwareness, get your loved one on this blog

June 19, 2010

While I’d love to have a huge group of people walking together at Long Branch Park Oct. 2 for the Alzheimer’s Association’s Memory Walk, I know that life sometimes gets in the way!

If you’d like to join us, but can’t, let DementiAwareness walk in honor or memory of your loved one. Make a donation of $50 or more through our team, and we’ll post your loved one’s photo on this blog through the end of October. (See my example at left.)

Now, if this recession is hitting you like it’s hitting me, you may appreciate this reminder: participation in the Memory Walk is free. You can raise awareness regarding Alzheimer’s and other dementias just by showing up–and that costs only your time.

Join the DementiAwareness team.

Make a donation to the Memory Walk on behalf of DementiAwareness.

Learn more about the Memory Walk.

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Forget-Me-Not Days are May 14 and 15

May 12, 2010


Donate money to the Alzheimer’s Association during “Forget-Me-Not Days” and receive seeds to plant in your own garden. The fund-raiser brought in more than $229,000 in 2009.

This will be the eighth consecutive year that Bankers Life and Casualty Company, a national life and health insurer, has undertaken the fundraiser which puts volunteers in distinctive green aprons, handing out seed packets to raise awareness of the disease.

What a great idea.

These beautiful blueish-purple flowers will come back year after year. They’re a pretty way to “carpet” an area of your garden. Plant them after the last frost, spacing them 4 to 5 inches apart and covering them with 1/8-inch of garden soil. They like the shade the best, must be kept moist, and in northern climates will require mulching over winter.

These are the flowers of remembrance, and of true love.

How to grow forget-me-nots from seed.

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On the horizon: A better way to diagnose Alzheimer’s disease

April 21, 2010

Autopsy provides the only way to definitively diagnose Alzheimer’s disease. Brain tissue samples may reveal a buildup of amyloid plaques, (left, courtesy the University of Liverpool) thought to contribute to the disease–though scientists debate about whether it’s the cause. Wouldn’t it be nice to be able to determine if someone has Alzheimer’s before they die? Or before they develop symptoms?

Medical imaging companies are heading in that direction, developing molecules with radioactive markers that will bind to amyloid plaques. Patients could receive an injection that would prompt regions of the brain to become colorized in a scan and reveal the location of those Alzheimer’s-related plaques, the Wall Street Journal describes.

Learn more about those amyloid plaques.

Find out how doctors diagnose Alzheimer’s.

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Remembering a parent with Alzheimer’s

March 31, 2010

Sue Wronsky writes in the newspaper supplement I edit, “Healthy CNY” about her mother and Alzheimer’s disease:

I don’t recall the last “normal” conversation I had with my mother.

One of her many caregivers during her 11-year battle with Alzheimer’s disease, I vividly remember our time together during the last years of her life. As it happens, the most recent memories of moments spent with this amazing woman – who had once been a world traveler, an advertising executive, a teacher, a Eucharistic minister, a military wife, an avid reader, a sister, a friend, a mother of seven and grandmother of 11 – were of feeding her lunches the consistency of baby food, giving her sponge baths, and trying to settle her unquiet thoughts by speaking softly in her ear as if she was a scared child….

Continue reading her essay (and see a picture of her mother)

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