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Fred and His Mom in 1950
Fred and His Mom in 1950

"I Am What I Remember."

Welcome to my weblog. My mother Libby D'Ignazio has Alzheimer's Disease. I love my mom as much as I love any person in the world. I know she loves me. Having her slowly drift away from me and not know me is something I can't bear.
 
I will use this weblog (or "blog") as a public diary. I will tell you what I learn, experience and feel as I go through my days as the son of a person with Alzheimer's. I hope that this journal will help others as they follow the same path I am following.
                        -- Fred D'Ignazio (Fall 2005)

 

Please send me your comments by using the form on the "Contact Us" page. Let me know if you want me to post your comment in the blog. Also, tell me if you want your email address listed.

This blog appears each day with the newest article on the top and the oldest article stored in the blog's monthly archives. In effect, it reads backwards!

To read the blogs in chronological order or to find a particular blog, click on Blog Articles.

For a quick introduction to the blog, take a look at:

"The Long and Winding Road" is the first article in the blog. It appeared on Monday, October 24, 2005.

Archive Newer | Older

Tuesday, February 28, 2006

The Story of Bob Moore and His Brain
 
Every day I read everything I can on Alzheimer's Disease. Often I summarize four or five articles in my blog. The articles are usually long and technical, and I like to translate them into readable English.
 
Today I'd like to recommend an article in its entirety. Its title is "Probing a Mind for a Cure." It appeared in the Philadelphia Inquirer on February 26th, and is reprinted at the Philly.com website.
 
This is the most comprehensive yet personal article I have ever read on Alzheimer's. It traces the story of Bob Moore, a Presbyterian minister, from his diagnosis of Alzheimer's in 1993, to his recent death this past December. It is a very informative, very moving article.
 
I recommend it to all of the readers of this blog.
 
6:03 am est

Monday, February 27, 2006

Poor Little Hippocampus
 
Wikipedia, the online Internet encyclopedia, defines short-term memory as:
Short-term memory, sometimes referred to as "primary" or "active" memory, is that part of memory which stores a limited amount of information for a limited amount of time (roughly 15-30 seconds). This can be contrasted to long-term memory, in which a seemingly unlimited amount of information is stored indefinitely. It can be described as the capacity (or capacities) for holding in mind, in an active, highly available state, a small amount of information.
What kind of "information" are we talking about? There are three types:
  • Information we get from our senses (feeling, touching, seeing, hearing, tasting)
  • Information we retrieve from our long-term memory (this is seemingly infinite)
  • Information we get by thought, or thinking.

Short-term memory and long-term memory are both victims of Alzheimer's Disease. Alzheimer's strikes the part of the brain -- the hippocampus -- that translates short-term memories into long-term memories. The hippocampus is a small, seahorse-shaped organ in the rear, lower part of the brain. (See my blog articles, "Untangling the Origins of Alzheimer's Disease -- Part One and Part Two.)

Writing this blog every day makes me think a lot about memory -- my memory, in particular. At the age of 57 my memory is starting to get a little fuzzy. When I can't think of someone's name or a phone number, I sometime wonder, "Is this a symptom of early Alzheimer's Disease?"

HOW ARE YOU DOING, LITTLE HIPPOCAMPUS?

I've also been thinking a lot about my hippocampus.

When I remember a song title or a character in a book, or some random fact or figure, I immediately think: "Hooray! My hippocampus is still working. Go, little hippocampus, go!"

However, when I have trouble remembering something, I fume and I fuss. I start blaming my hippocampus by saying things like: "You really dropped the ball, hippocampus. You didn't store that memory, did you?"

At night I sometimes think about my hippocampus.

When I'm happy and feeling upbeat I imagine it looking like a perky little seahorse, all frisky and squeaky clean. It is always smiling.

But when I'm sad or tired, I worry about my hippocampus. I imagine it sitting there, forlorn and forgotten in the back part of my brain. I see it quivering fearfully as sooty lumps of protein float down on its helpless little flamingo-like legs. I see it struggling to free itself from the tangles of dead brain cells and the thick, crusty proteins that imprison it behind a brick wall like the poor victim in Edgar Allen Poe's story The Cask of Amontillado.

Poor little hippocampus. I'm sure it's doing the best it knows how.

9:21 am est

Friday, February 24, 2006

Making More Mighty Mitochondria

In my February 2nd blog article The Link Between Alzheimer's Disease and Diabetes I wrote about new research showing the connection between Alzheimer's and diabetes. Now an article in the Raleigh News and Observer has zeroed in on this connection. At the center of the crosshairs is our body's tiny yet mighty mitochondria.

The story starts with the protein ApoE4:
While Alzheimer's probably has several triggers, one of them seems to be a gene that makes a protein called ApoeE that shuttles fats in the bloodstream. About a fifth of the general population makes a version of this protein called ApoE4 that breaks up, leaving fragments in brain nerve cells. It's those fragments that scientists think play a role in Alzheimer's.
(To learn more about how Alzheimer's begins, see my articles "Untangling the Origins of Alzheimer's" -- Part One and Part Two.)
 
The ApoE protein repairs and maintains our brain's nerve cells and their long, spidery tentacles. But the ApoE4 variant (in 20% of the population) breaks down into smaller fragments that become toxic. The toxic fragments attack the cell's tentacles and cause them to wither and die. The dead cell tentacles form the telltale protein tangles in people suffering from Alzheimer's.
 
New research done in December 2005 at the Gladstone Institute shows that these toxic ApoE4 fragments also attack our brain cells' mitochondria. Mitochondria are tiny, oval-shaped bodies that live inside all the cells of our body. Their job is to convert cell nutrients into cell energy. The main nutrient is glucose, or sugar.
 
According to an article in the New England Journal of Medicine:
The decrease in nerve cells' ability to process glucose can be detected up to 20 years before the onset of Alzheimer's.
As I reported in my February 2nd article, research at GlaxoSmithKline (GSK) in North Carolina shows that the drug Avandia XR (rosiglitazone) slows the progress of Alzheimer's. It does this by stimulating brain cells to produce more mitochondria.
 
The Avandia XR does not "cure" a person of Alzheimer's Disease. Nor does it stop the progress of Alzheimer's. But it does slow the progress by helping the brain make enough new mitochondria to keep cells alive after their old mitochondria have died.
 
BETTER THAN A SPINAL TAP
 
ApoE4 is a biomarker for Alzheimer's Disease. If you are in the one-fifth of the population that has the ApoE4 protein it doesn't mean that you will automatically get Alzheimer's. It just means your risk of Alzheimer's is higher.
 
You can learn whether you have ApoE4 by submitting a blood sample or by having a doctor or genetics lab scrape a few skin cells off the inside of your cheek. This test is painless and costs from $200-$400.
 
If you test positive for ApoE4, you might consider taking Avandia as a preventive measure against Alzheimer's. The strongest form of the drug, Avandia XR, hasn't been approved yet in the United States, but the application and approval process for the drug has begun.
 
6:43 am est

Thursday, February 23, 2006

Owsley's Report from Florida
 
My brother Owsley called yesterday from Mom and Dad's place in Ocean Reef, Florida, to give me a status report on how things are going there. They've been there for about three weeks.
 
Here is his voice message to me:
 
Hey, Fred. It's Wednesday the 22nd. It's about 11:15 AM. I'm just checking in. I haven't talked to you in awhile. I thought I'd give you an update. We've got some beautiful weather here.
 
I'm keeping busy -- keeping real busy.
 
Mom's heading over to the pool right now with Pop. She and I got up and took a ride around the Reef. We went over and had a coffee at the main building. She was up early and went to church at nine.
 
She biked and swam yesterday. We got out and played tennis the day before. She is still having a tough time moving at tennis.
 
She is definitely, little by little, getting more active. I made her walk a good distance today. We went out to the point. Just sat there.
 
Her memory is definitely ... she keeps asking the same questions over and over. So there is definitely a problem there. I don't think her memory has gotten any better. If anything it has gotten worse.
 
But other than that she is in good spirits. She hits her lulls ... When you can get her moving, get her motivated, she seems better off. My goal is to keep her as active as possible.
 
I ran groceries for them yesterday and picked up drugs -- ran all around the lower keys picking up stuff. Before you know it, the day is gone. But we do have some nice weather now. So this is definitely enjoyable -- eighty-two or eighty-four degrees ...
 
Whoa ...
 
Look at those fish jumping there, Andy. Look at the fish! There are a bunch of barracuda in here.
 
[Andy is Owsley's dog. Andy is like Owsley's brother.]
 
I take Andy out early to Cannon Point. He swims two or three different places. He just walked into the pool to take a swim. Took a little swim and walked back out. He thinks it's his pool.
 
Pop's hollering for him.
 
On that note ... I hope you're well. Tell the gang I said hi. Let me know when you are coming down.
 
There goes Andy with my sock!
 
Talk to you later, Fred. Love you.
 
Bye.
 
6:48 am est

Wednesday, February 22, 2006

Getting Medicare to Pay for Your Alzheimer's Pills
 
I was listening to the radio the other day and heard a medical expert say that the top five Alzheimer's medicines are not covered automatically by the new Medicare prescription drug payment program. Even worse, the expert said that the Medicare insurer would not authorize coverage of the drug until the patient provided proof that they have Alzheimer's.
 
The only reliable "proof" that a person has Alzheimer's Disease is to perform an autopsy on their brain after they have passed.
 
In other words, you have to be dead in order to qualify for Alzheimer's drugs under the new Medicare prescription drug plan.
 
The top five drugs prescribed by Alzheimer's specialists are:
  • Razadyne (formerly Reminyl - galantamine)
  • Exelon (rivastigmine)
  • Aricept (donepezil)
  • Cognex (tacrine)
  • Namenda (memantine)

None of these drugs is covered automatically under the new Medicare plan. All Alzheimer's drugs must be "pre-authorized" (approved by the insurer) even if they are the recognized standard for treatment of the disease.

According to an article that appeared February 14, 2006 in the New York Times:

Doctors and pharmacists say many drugs theoretically covered by the new Medicare drug benefit are not readily available because of insurers' restrictions and requirements.

The benefit is administered by scores of companies under contract to Medicare. Each plan has its own list of covered drugs, known as a formulary. Drug plans require doctors and patients to obtain ''prior authorization'' for certain drugs on their formularies.

The procedures vary by plan. One plan may have 25 or 30 forms for prior authorization for different drugs. Most states have at least 40 Medicare drug plans.

Doctors say the diverse requirements are onerous and can delay or deny access to needed medications.

The New York Times article doesn't mention "proof" of Alzheimer's, but it does say:

Some companies require doctors to report the patient's score on a mental examination before covering certain drugs for Alzheimer's. Insurers say the test is needed to decide whether a patient is likely to benefit.

Even this test seems inappropriate. A single test could theoretically be used to deny a person coverage for an Alzheimer's drug that could still protect them against some of the ravages of Alzheimer's. Alzheimer's is still imperfectly understood and none of the medications is completely understood. What is clear is that they work.

I'm going to look into this further. I will report on what I learn in a future blog. (If any reader learns something on this topic, please email me at fred@videolifenarrative.com. Thank you!)

10:24 am est

Monday, February 20, 2006

Mom Is Still Mom
 
My mother called me today from Florida. This is a rare thing. Usually I call her. I was thrilled.
 
"How are you?" I gushed.
 
"Just fine," she said.
 
"I called earlier and no one answered," I said. "I always worry when I can't reach you."
 
"We're fine, honey," my mom said (using that special "mom" voice). "You know your father. He can't sit still. He gets us in the golf cart and we go everywhere."
 
Mom and I went on to talk about the weather--their weather, our weather. (We always talk about the weather. It's Mom's favorite topic.) Then we hung up.
 
I always have a moment or two after my phone conversations with family members where I silently replay the conversation in my mind. I also replay the tone of the conversation. If it was unpleasant I wince and cringe and try to unwind. But if it was a good conversation I savor the tone and feel its afterglow.
 
This was a conversation to savor.
 
THE FOG OF FLORIDA
 
I was anxious to hear from Mom because my sister Lisa and I had just had talked about how hard it is to get a clear picture of how things are going in Florida.
 
It's like trying to see through fog. Things are always indistinct and fuzzy.
 
We have three family members in Florida: Mom, Dad and my brother Owsley. It is so hard getting a straight answer out of them that Lisa and I suspect that all three of them work for the CIA.
 
If they do, we'd never know.
 
Let's start with Mom. She's off the hook because of her condition. She doesn't remember what she had for breakfast. It's better not to ask Mom too many questions that require her to use her memory.
 
Then there's Dad. When Lisa calls she asks to speak to Dad. "The man can barely walk," my sister says. "But somehow he's never there. They tell me he's napping, or he's just stepped out, or he's unavailable. Yet I know he gets on the phone and talks for hours with his secretary Barbara."
 
I agreed with Lisa. "It's like playing hot potato," I said. "When I call, they all play hot potato with the phone. They talk for a moment then quickly pass the 'potato' to the next person. Then they pass it again."
 
Last, there's Owsley. This is one mysterious dude. I wouldn't be surprised if he had several aliases and ingenious disguises. We rarely get information out of Owsley directly. You need a good grapevine of informants. This way you hear secondhand and thirdhand from others and you piece together clues to see what Owsley is up to. But even then you can't be sure.
 
Together Lisa and I tried to pierce the fog of Florida to get a picture of what is really happening.
 
IT'S LIKE PENNSYLVANIA, ONLY WITH PALM TREES
 
"It's okay," Lisa said after all our speculation and worrying. "I think they're fine."
 
According to Lisa's theory, life in Florida is the same as it was in Pennsylvania. It's just 50 degrees warmer, and they have palm trees.
 
"You know," said Lisa. "We kids are really lucky. I talk with people every day who have relatives or friends with Alzheimer's. When I describe Mom they can't believe it."
 
"What do you mean?" I asked.
 
"I'm almost embarrassed," said Lisa. "They tell me stories about how their parents can't remember them, or their kids. They tell me how much people's appearance changes. They don't dress right. They don't know how to attend to their clothing, their makeup, or even their personal hygiene. They also talk different."
 
"That's true," I said, thinking about my Alzheimer's Disease research for my blog.
 
"And look at Mom," said Lisa. "Bottom line: she is doing really well. She's gotten fuzzy around the edges, but she knows all of us kids. She's still knows her grandkids. She hasn't forgotten any of us. That alone makes us blessed.
 
"Mom is still Mom," she concluded. "We don't need to know everything that goes on in Florida, if we know that."
 
2:51 pm est

Friday, February 17, 2006

Mutant Mice Superheroes Sacrifice Their Lives for Alzheimer's
 
Thousands of scientists around the world are working tirelessly to find new cures and treatments for the deadly Alzheimer's disease. Do you ever wonder where these scientists do all their work? The answer may surprise you:
 
Inside the tiny brains of laboratory mice.
 
Using advanced gene splicing techniques scientists have bred new generations of laboratory mice that carry the telltale signs of Alzheimer's Disease in their brains. When they are only a few months old, the mice already mimic the brains of senior citizens who have advanced Alzheimer's.
 
In the literature these mice are referred to as trans-genic mice. They are called mouse models, as if they were some kind of mathematical  formula or computer program. But they are real, flesh-and-blood animals. And they are giving their lives every day in the service of Alzheimer's research for human beings.
 
A NATURAL DEFENSE MECHANISM
 
Using these mice superheroes, Canadian scientists have uncovered a natural defense mechanism against Alzheimer's Disease, right inside the brain.
 
The two unmistakable signs of Alzheimer's are clumps of protein (known as "plaques") and spahetti-like tangles of protein in the cortex and hippocampus of the brain. (For more information see my blog articles "Untangling the Origins of Alzheimer's" -- Part One and Part Two.)
 
The brain has a natural defense mechanism against the protein plaques: microglial cells. Microglial cells are the immune cells sent to plaque infestation by the central nervous system. Their job is to dismantle the plaques. Unfortunately, for some unknown reason, they fail. The plaques keep growing, the tangles emerge, neurons die, and Alzheimer's takes over the person's brain.
 
If we could get the microglial cells to be better plaque fighters, we could help the brain resist the Alzheimer's.
 
This is just what a team of scientists has done in Quebec City, Canada. The team has re-engineered microglial cells using mutant mice in their experiments. They have developed a new superior microglial cell that is successful against the plaque. According to their report:
Using tests conducted with transgenic mouse models of AD, investigators have demonstrated that bone marrow-derived microglia infiltrate amyloid plaques and succeed in destroying them most efficiently. These newly-recruited immune cells are specifically attracted by the amyloid proteins that are the most toxic to nerve cells.
This new research may affect how Alzheimer's is treated. When the body's natural microglial cells accumulate around the protein plaques the brain becomes inflamed, resulting in the death of the brain's neurons. Anti-inflammatory drugs are prescribed to reduce this inflammation.
 
The director of the Canadian research team, Dr. Serge Rivest, says that we are going about Alzheimer's treatment in the wrong way. According to Dr. Rivest:

Anti-inflammatory drugs should not be administered in cases of Alzheimer's disease, as they interfere with this natural defense mechanism. On the contrary, a way must be found to stimulate the recruitment of a greater number of bone marrow-derived microglia.

I will keep you posted on these new findings in Alzheimer's research. In the meantime, say a prayer or think positive thoughts about the mice. When an Alzheimer's cure is finally found, we will thank the brilliant scientists. But we should not forget the mice.

8:54 am est

Thursday, February 16, 2006

You Really Can Die from a Broken Heart
 
A year ago, scientists published a report in the New England Journal of Medicine proving that you can die from a broken heart. The condition, called cardiomyopathy, is a stunning of the heart muscle brought on by the stress of losing a loved one, usually a spouse. The average age of the patients suffering from a broken heart was 63; ninety-five percent of them were women. The report concluded:
Emotional stress can precipitate severe, reversible left ventricular dysfunction in patients without coronary disease. Exaggerated sympathetic stimulation is probably central to the cause of this syndrome.
The bad news is that the heart attack can be fatal. The good news is that the condition is treatable if the person receives a timely, correct diagnosis.
 
YOU CAN ALSO DIE IF YOUR PARTNER GETS SICK
 
This study on the broken heart syndrome appeared a year ago. Today a new study has been published that goes even further. In an article in the Chicago Tribune, Dr. Nicholas Christakis, lead author of the study and a professor at Harvard Medical School says:
We showed that you can die of a broken heart not just when your partner dies, but also when your partner falls ill.
The Harvard study followed 518,000 elderly couples for nine years. The study demonstrates the close bond that grows between couples over the years. Just putting a husband in a hospital (regardless of the situation) raised a wife's risk of dying by 3 percent. When a husband hospitalizes his wife, his risk of dying rises by 5 percent.
 
Things get really serious when the spouse is hospitalized with a serious ailment. When a husband is hospitalized for congestive heart failure, his wife's risk of dying increases by 15 percent. And if a wife puts her husband in the hospital for dementia, her risk of dying jumps a scary 28 percent.
 
The study highlights how the health of each person is dependent on the health of their partner. According to the Chicago Tribune:
Though it has long been known that widows or widowers often die soon after their spouse passes away--a phenomenon known as the bereavement effect--Christakis' research is the first to look at the impact of serious illness on husbands' and wives' deaths.

It shows that medical risks to a spouse appear to be highest immediately after a medical crisis. In the first 30 days following a wife's hospitalization, a husband's risk of dying rises 35 percent, the Harvard study found. During the first month after a husband's hospitalization, a wife's risk of dying soars 44 percent.
Doctors speculate that this elevated risk is due to stress. They see it as an extension of the broken-heart syndrome. The stress of your partner dying can kill you; and the stress of your partner becoming seriously ill can also kill you.
 
Although the risk of death is highest just after a partner becomes ill, the risk remains high for months and even years after the triggering event. Dr. Christakis said this elevated risk could be caused by several factors, including ongoing stress, increased social isolation, the burden of caregiving, and by a person neglecting their own health.
 
The spouse who is healthy follows the downhill path of their sick partner. Every time the sick partner hits a bump in the road, the caregiver is right there with them. Their health starts to mirror their partner's health. They are intertwined.
 
In the Tribune article the reporter, Judith Graham, interviewed various people who had critically ill partners. One lady, Bertha Martinez, reported that her health was never the same after her husband, Javier, collapsed in a hospital four years ago. 
 
Obsessed with worry over her husband, Bertha stopped eating and dropped 25 pounds. As her weight fell she grew more anxious and had trouble sleeping.
 
Her husband has now suffered two strokes, and Bertha's health is worse than ever. Every day she worries that something new will go wrong. "It's a continuous fear that I'll lose him, that suddenly he'll be gone," she says.
 
This study could open the eyes of physicians who treat older couples. When they see a patient, they might ask the question: "Do you care for a loved one who is chronically ill or disabled?"
 
If the answer is yes, they have just identified a person with elevated risk for disease and even death. This information can become a valuable marker for doctors to catch at-risk patients before their symptoms become serious and their health spirals downhill.
 
3:35 pm est

Wednesday, February 15, 2006

Write President Bush a Letter
 
If enacted, the Federal Budget for 2007 will cut valuable funding for Alzheimer's research, the "Safe Return" program, and community education about Alzheimer's.
 
Unless Congress restores the following items, they will be lost in the upcoming Federal Budget:
  • The $12 million in state grants for community-based Alzheimer's care
  • The $1.6 million "Maintain Your Brain" campaign run by the Centers for Disease Control and Prevention
  • The "Safe Return" program that helps local law enforcement and health-care agencies find persons with Alzheimer's who have wandered away from their home or assisted-living facility. (Read more about safe return in my blog.)

Stephen McConnell, vice president for public policy at the Alzheimer's Association, is puzzled at the program cuts. All these programs together are a small blip in a 2.7 trillion dollar budget. According to McConnell:

It costs Medicare three times as much to take care of somebody with Alzheimer's disease than not. If we could even just slow the progression of this disease, we could reduce the cost substantially.

In addition to the program cuts above, the 2007 budget reduces Alzheimer's research funding by $7 million, from $652 million to $645 million. This may not seem like much. But the funding cut comes at a time when one in ten older Americans have Alzheimer's and the numbers are projected to increase dramatically over the coming years. Research for Alzheimer's is costly but it is only a fraction of the national cost of caring for people who have Alzheimer's. Four and a half million people have Alzheimer's today. By mid-century that number will swell to more than 16 million people.

PLEASE WRITE PRESIDENT BUSH

I am writing President Bush today to ask him to restore the budget cuts that lower the support for Alzheimer's care and research. I ask all my readers to contact President Bush by phone, email, or regular mail. For his phone number, email, and address, please go to the White House website.

Please copy the note you write to President Bush and paste it in an email to your Congressman or Congresswoman. You can get the address at the U.S. Congress website.

Please copy the note and paste it into an email to your Senator. You can get the address at the U.S. Senate website.

You can also go to the Congress.org website and find all the addresses above.

It will take only a few minutes of your time to contact your elected officials, and you can show timely support for people with Alzheimer's and for Alzheimer's researchers and caregivers.

8:42 am est

Tuesday, February 14, 2006

Looking for Alzheimer's in Really Small Places
 
I am on the trail to find an early warning sign for Alzheimer's so I can nip it in the bud before I get it.
 
I recently reported on the research being done using cerebrospinal fluid (CSF) as a method for detecting Alzheimer's. Please see my blog articles: New Discoveries for People with Alzheimer's (2/7/06) and I Think I First Caught Alzheimer's at Age 10! (2/9/06).
 
Using this new method a doctor can make a small puncture in your spinal cord and draw out enough spinal fluid to make the test. If you have certain proteins (b-amyloid, total tau and phosphorylated-tau) you stand a good chance of getting Alzheimer's. These proteins are known as biomarkers since they are good at predicting a disease that you will get in the future.
 
My big problem with this new method are the words spinal cord and puncture. According to the research report, there is an associated risk every time you voluntarily pop a hole in your spinal cord, even if the hole is small and you are only extracting a miniscule amount of spinal fluid.
 
So you can imagine my excitement reading an announcement today in which the CSF biomarker company Applied Neurosolutions is planning to work with a company named Nanosphere. Applied Neurosolutions is good at finding early-warning markers for Alzheimer's and Nanosphere is good at creating tests using really tiny amounts of body fluid.
 
Tiny? We're talking molecules here.
 
According to the press report:
This research program will apply Nanosphere's proprietary Biobarcode(TM) technology for ultra-sensitive protein detection to Applied NeuroSolutions' proprietary biomarkers, which have been shown to be 85 to 95 percent accurate in the detection of Alzheimer's disease. Ultra-sensitive detection of these markers has the potential to lead to the next generation of diagnostic tests for Alzheimer's disease.
In particular, I like what John DeBernardis, President of Applied Neurosolutions, has to say:
Nanosphere has developed a groundbreaking platform for the detection of nucleic acids and proteins at extraordinary low concentrations, and we believe this collaboration could lead to better diagnostic tests for Alzheimer's disease, strengthening our product pipeline and potentially allowing us to utilize other bodily fluids for an Alzheimer's test.
Did you catch that? He says: "... potentially allowing us to utilize other bodily fluids for an Alzheimer's test." That means bodily fluids other than our spinal fluid.
 
Yes! Now we're on the right track: an early-warning test that catches Alzheimer's before it takes hold of our brains; and they don't have to poke a hole in our spinal cords to do it.
 
I'm rooting for Nanosphere and Applied Solutions, and you should, too.
 
7:42 am est

Monday, February 13, 2006

Maya Angelou Wants a Picture of Your Brain
 
Maya Angelou is a nationally known African-American poet. Dr. Angelou read her poem "On the Pulse of the Morning" at Bill Clinton's 1993 inauguration. She has served as Poet Laureate of the United States.
 
Maya Angelou is looking for a picture of your brain.
 
Dr. Angelou, a professor at Wake Forest University in Winston-Salem, NC, has lost several dear friends to Alzheimer's Disease. Her response is to host a public outreach campaign entitled "Imagine Stopping the Progress of Alzheimer's Disease." Her goal is to recruit hundreds of Americans ages 55 to 90 into a new, landmark research study on Alzheimer's.
 
The study is called the Alzheimer's Disease Neuroimaging Initiative (ADNI). The National Intitutes of Health (NIH) is encouraging 800 older Americans to join this study to investigate the links between memory decline and Alzheimer's Disease. Scientists hope that they will find early-warning symptoms called biomarkers that appear years before the onset of the disease. A person who has these biomarkers can begin taking drugs designed to ward off the disease before it has seriously harmed their brain.
 
According to Science Daily:
Scientists are looking for new ways to measure changes in the brain that occur with normal aging and with the progression of mild cognitive impairment (MCI), a subtle but measurable transitional state between the cognitive changes of normal aging and very early AD. People with MCI have memory impairments but otherwise function well and do not meet clinical criteria for dementia.
The study's researchers will "take pictures" of participants' brains using magnetic resonance imaging (MRI) and positron emission tomography (PET) scans. They will look at compounds in the blood, cerebrospinal fluid and urine. They will also ask participants questions designed to track their memory capabilities over the three to five years of the study.
 
According to the study's principal investigator Dr. Michael Weiner of the University of California:
Our goal is to ‘see’ critical brain changes and to identify biochemical indicators that may be useful in evaluating treatments aimed at slowing memory decline and AD.
This is a great opportunity for all of us to help in the fight against Alzheimer's Disease. If you or someone you love is between the ages 55 to 90, you can participate. You can learn how to participate by contacting the National Institute on Aging's Alzheimer's Disease Education and Referral (ADEAR) Center at 1-800-438-4380 or by visiting the ADEAR website.
 
Over 4.5 million Americans have Alzheimer's Disease. As baby boomers age, the numbers are likely to swell enormously over the coming decades. (See my blog article, Alzheimer's Disease: A Global Ticking Time Bomb.)
 
Alzheimer's Disease is so vast, pervasive and mysterious that it can be intimidating. But here is a chance for us to do something about it.
 
Maya Angelou and the National Institute on Aging have a great idea. Alzheimer's biomarkers for our brains are similar to high cholesterol as a biomarker for our blood vessels. In the 1970s scientists discovered that high cholesterol was a biomarker (early predictor) for strokes and heart attacks. Now with this study we have the chance to develop a "cholesterol test" biomarker for Alzheimer's Disease.
 
8:32 am est

Friday, February 10, 2006

Getting Outside Help ... Too Little, Too Late?
 
I heard from my sister-in-law Teri yesterday. And it didn't sound good.
 
Teri has been talking on the phone with my brother Owsley. Owsley is with my parents at their home in Ocean Reef on Key Largo. Owsley told Teri that Mom is not interested in participating in activities like tennis or singing. Teri said Mom's lack of motivation is driving Owsley crazy.
 
I had been hoping that Mom was thriving in Florida. (See my blog articles "A Fresh Start for Libby" and "No News Is Good News?")
 
One thing is certain: Mom needs stimulation. In an article on Alzheimer's Disease, social worker Pamela Taylor writes:
Many families believe that their loved one is fine sitting at home all day but the opposite is true. Lack of activity can actually accelerate disease progression and cause increased behavior problems.
A NOBLE PLAN
 
My father has a noble plan. It has four basic rules:
  1. Stay independent as long as possible.
  2. Dad is Mom's primary caregiver
  3. Get the kids to pitch in as backup caregivers.
  4. Stay away from institutional care at all costs.

This is a good plan, but it also has a problem: lack of expert care. Dad is 88 years old, and he has become a saint in his efforts to look after Mom. But he has a heart condition, crippling arthritis, limited mobility and constant pain. Meanwhile Mom is physically in great shape for an 81-year-old woman. She doesn't have any motivation, but physically she is capable of leading an active life.

According to Pamela Taylor in her article:

Many caregivers are not sure when to turn for help and often get "too little too late". Some family members feel guilty taking time for themselves and insist that they are quite capable of caring for their loved ones without outside help. The truth is that without professional help and respite, a caregiver is at a very high risk for illness, which ultimately will undermine his or her ability to continue caring for a loved one at home.

Dad's hope is to have his kids relieve him as primary caregiver. But this is more difficult when Dad and Mom don't stay put in one place. They have four homes and they are still trying to live in all four of them. We had a good support system going in their primary home in Media, Pennsylvania. But now they are hundreds of miles away in Florida.

Owsley is with Mom and Dad in Florida. I will call him today to find out the latest news. I'll report in this blog what I hear from him.

My worry is that none of us--Dad, Owsley, Timmy, Lisa or myself--has the professional skills to look after Mom. Owsley is the most effective motivator for Mom. But if he can't get her to do things, then I'm worried that no one can.

OCEAN REEF vs. ADULT DAY CARE

Ocean Reef is a very exclusive community. Dad says that it is so exclusive that "the millionaires are being crowded out by the billionaires." Dad also complains about the lack of courtesy and common civility of Ocean Reef's residents. He says that they seem very self-centered and often appear unfriendly to others.

In addition, Dad is reluctant to tell anyone at Ocean Reef about Mom's condition. He expects them to just be nice to Mom and go with the flow.

I'm worried that Ocean Reef is not a hospitable environment for a person with Alzheimer's. I think Mom needs to interact with other people and she needs more contact with professional care givers. Right now under my father's and brother's loving care Mom doesn't want to do much; and the less she does, the more she is likely to go downhill mentally.

According to Pamela Taylor:

A very effective solution to this problem is attending an adult day program. Everyone benefits from this arrangement: the caregiver gets a much needed break and the person with Alzheimer's can enjoy socializing in a safe and stimulating environment.

Unfortunately, my father is trying to avoid any kind of professional care outside the home.

6:56 am est

Thursday, February 9, 2006

I Think I First Caught Alzheimer's at Age 10!
 
Doing this Alzheimer's blog sure has opened my eyes. Thanks to my daily research on Alzheimer's I have learned that I may have first caught the disease when I was ten years old.
 
Yes, ten years old. That's when I fell off my bicycle in Moylan, Pennsylvania, and had my first head injury. (I didn't do anything other than open a gash in the side of my head, but it was still an injury.)
 
The reason I suspect Alzheimer's is that scientists have announced that there is a linkage between head injuries and Alzheimer's. According to a report from the Alzheimer's Disease Education and Referral Center (ADEAR):
A new analysis of head injuries among World War II veterans links serious head injury in early adulthood with Alzheimer's disease (AD) in later life. The study, by researchers at Duke University and the National Institute on Aging (NIA), also suggests that the more severe the head injury, the greater the risk of developing AD.
Since my bike accident didn't result in a serious head injury I probably just developed a little Alzheimer's Disease when I was 10.
 
ALL THE REASONS I HAVE ALZHEIMER'S
 
It's unlikely that my fall from my bike at age 10 precipitated anything as drastic as Alzheimer's Disease. But this hasn't stopped me from worrying. My daily research on Alzheimer's has worked on my imagination to the point that I am sure that I am going to get it. Gosh, I think I may already have it!
 
Every time I learn a new cause or symptom for Alzheimer's Disease I think, "Yep! I have that!" or "Yessir, that's me!"
 
Here are some of the reasons I think I already have Alzheimer's:
  1. That bike injury I told you about.
  2. My high cholesterol. Scientists think that people with high cholesterol experience mini-strokes that lead to dementia. My cholesterol isn't all that high, but how large does a mini-stroke have to be to trigger Alzheimer's?
  3. Depression. Studies show that people who have been depressed are more at risk to develop Alzheimer's. (See my blog article from Tuesday.) Now every time I start to feel blue I immediately think happy thoughts. And if I can't think of any happy thoughts, I go eat chocolate.
  4. Age. The older I get the more likely I'll come down with Alzheimer's. Every 5 years my risk doubles. I'm already worried about turning 95 because then I'll have a 50% chance of having Alzheimer's.
  5. My genes. My mom has Alzheimer's. Mom, me and everyone else has a protein in their genes called Apolipoprotein E. If we have a certain form of this protein (the evil "number four" protein) and we have two copies, then we are more likely to have Alzheimer's. Next time I go to the Redi-Care up the road from my house for a sinus infection or swimmer's ear, I plan to ask them to also check my genes.
  6. My memory. This is the big one. I've noticed that I have a pretty unreliable memory. New studies have focused on a term known as Mild Cognitive Impairment. You could think of this as "baby Alzheimer's." Mild Cognitive Impairment -- or "MCI" -- means that you don't have full-blown memory loss but you are getting a little fuzzy around the edges. Every time I can't think of a song title or I forget to close my car door I make a mental note to have my Hippocampus scanned the next time I'm at the doctor's office. (Fuzzy about the hippocampus? Check my blog article.)

If you are a worrywart, too, then please don't check out the article on Alzheimer's risk factors at About.com. It'll just make you worry more.

HOPE FOR WORRYWARTS

The more research on Alzheimer's I do, the more I worry. But help is on the way. Drug companies are beginning to explore a fresh area of Alzheimer's research known as biomarkers. According to a report in Pharmaceutical Business Review Online:

Biomarkers have been shown to effectively predict those more likely to develop Alzheimer's disease.

Long-term studies have shown biomarkers to be effective in predicting those with mild cognitive impairment that will go on to develop Alzheimer's disease. Such a test could help companies developing new therapies for delaying or preventing the onset of Alzheimer's, and, by identifying the need for treatment early, could improve both drug uptake and treatment success rates.

Biomarkers set my mind at rest. I can go to the doctor and ask them to test me for biomarkers of Alzheimer's. If I have them, there are drugs being developed that I can begin taking to ward off the disease. If I don't have them, so much the better.

But biomarkers also have me worried. That's because the most effective biomarker is cerebrospinal fluid (CSF). According to a study reported on in the British journal Lancet:

A lumbar puncture or spinal-tap is required to obtain CSF. The procedure takes five to 10 minutes, making it a longer procedure to perform than a blood sample. Furthermore, it requires local anesthetic and is associated with some additional, albeit rare, risks. The race is therefore on to discover similar markers in blood.

This is a real stopper. I'm not sure I want doctors to puncture my spinal cord just to test for Alzheimer's. The actor George Clooney had his spinal cord punctured (making the movie Syriana) and he had spinal fluid coming out of his nose.

How big a worrywart am I?  Can I live with my worries?

I think it's time to do more research.

8:02 am est

Wednesday, February 8, 2006

Curing Alzheimer's -- You Just Have to Inhale!
 
My wife Janet says that if she ever gets Alzheimer's she is a goner. It has been shown that taking pills regularly (chiefly Namenda, Exelon and Aricept) dramatically slows the progress of Alzheimer's Disease. The problem is that Janet hates pills. She has to be nagged to take them. She has to nag herself. And she still forgets.
 
I heard good news today for people like Janet: a nasal spray for Alzheimer's sufferers.
 
According to a report from UPI, the Japanese company Nippon is testing a nasal spray that can be used by people who have mild to moderately severe Alzheimer's. The company has a powder that has been shown to be effective when it is turned into a solution and injected into patients. And now they are testing a nasal inhaler that a person would use every day.
 
When Janet gets home tomorrow from her latest business trip I'm going to tell her about the nasal inhaler. I'm not going to tell her about the injections, however.
 
Janet hates needles even more than she hates pills!
 
10:46 am est

Tuesday, February 7, 2006

New Discoveries for People with Alzheimer's
 
Millions of dollars are being spent around the world on Alzheimer's research. Every day studies are reported that shed new light on the origins of Alzheimer's Disease and its cure. Some of the news is pretty far out and some of it is quite technical, but collectively it gives hope to people with Alzheimer's and to their families.
 
Let's take a look at four new reports that appeared yesterday and today:
 
TURMERIC -- SPICE FOR THE BRAIN
 
Yesterday the LA Times reported that the pungent, woody-tasting spice turmeric may have some future role as a treatment for Alzheimer's Disease.  The National Institutes of Health (NIH) has funded eight studies investigating turmeric.
 
Turmeric is a relative of ginger. Turmeric contains curcumin which is a powerful antioxidant. (For more on antioxidants see my two blog articles - Untangling Alzheimer's -- Part One and Part Two.) The curcumin turns off a powerful protein that promotes abnormal inflammatory response all over the body. Scientists speculate that it is this inflammation that is at the root of Alzheimer's disease.
 
EARLY PREDICTION FROM YOUR SPINE
 
Forbes magazine in an article on February 6th reported on a Swedish study that shows how a high level of certain molecules in your spine may predict the future onset of Alzheimer's Disease:
The study of 180 people found that abnormal levels of molecules called b-amyloid, total tau and phosphorylated-tau in the fluid that bathes the brain and spinal cord predicted development of Alzheimer's Disease with high accuracy over the next few years.
TWINS SHOW GENES AT HEART OF ALZHEIMER'S
 
MSNBC reported on a study by the University of Southern California of 392 pairs of twins in Sweden. The report indicates that inheritance may be the cause of almost 4 out of every 5 cases of Alzheimer's Disease.
 
DEPRESSION A MAJOR FACTOR IN ALZHEIMER'S
 
CBS News reported today that people who fight depression much of their lives may be more at risk for Alzheimer's Disease.
 
A plaque made out of protein is associated with all cases of Alzheimer's Disease. This plaque appears in the hippocampus region of the brain. When doctors examined the hippocampus of people who had battled depression, they found an abnormally high amount of the same plaque that is associated with Alzheimer's.
 
5:26 pm est

Monday, February 6, 2006

No News Is Good News?
 
My grown-up children Catie and Eric live away from home and are pretty self-sufficient. As a result they don't call home frequently. When they do it's because: 1. They are in a personal crisis; or 2. They need something.
 
This situation is also true of my parents and my brother Owsley.
 
Owsley and my parents left our home here in North Carolina almost two weeks ago. They arrived in Ocean Reef, Florida, two days later and settled in. Since then it has been very difficult to reach them.
 
This would not be a problem except that my father has now trained me to be super-attentive and super-worried. After his lecture to me last summer (see my blog article, "The Long and Winding Road") I have called my parents every morning to check on them. I have visited them almost every month and lived in their apartment with them for up to five days at a time. I have been in constant touch with my sister Lisa and my brothers Owsley and Timmy, talking with them, and listening to their own experiences with Mom and Dad.
 
So when I don't hear from Mom and Dad for several days I get nervous and antsy. I feel guilty, like I'm not doing my job.
 
I still call every morning, but no one calls back.
 
Yesterday my sister Lisa called me and told me that she had spoken with Dad the day before, and he had said that he and mom were doing fine. This news helped for a few hours, but I woke up again this morning all worried and fretful. I needed to speak with my parents myself.
 
I finally reached Mom. "Are you okay?" I said anxiously. "Are you sure you're okay? Where have you been? Why haven't you called me?"
 
(Even as I asked my mom this question I knew I was being ridiculous. My mother has Alzheimer's Disease. Whenever she actually returns one of my calls it is a surprise.)
 
"We're fine," she said. "Why?"
 
"Mom, I call you every day," I continued, unable to stop my interrogation. "You never call back."

"Well we've been busy," said my mom.
 
I decided to test her. "Have you been riding your bicycle?" I asked.
 
"Yes," she said proudly. "Every day."
 
"Well," I said, "please watch out for the traffic. Those golf carts can sneak up on you. And how about tennis? Have you been playing tennis?"
 
"Yep," she said brightly. "Owsley and I went out and hit a few balls yesterday. My arm felt good. I just need to build my stamina."
 
"Very good," I said, lightening just a little. "And how about your singing? Have you been to see your Ginger Snaps singing group?"
 
"I have," she said proudly.
 
"How often?" I asked, still not satisfied.
 
"I sang with them last Monday, and I'll be singing with them today."
 
"All, right then," I said. "You're doing pretty well. But how about your swimming? Have you and Dad been doing your water aerobics?"
 
"We were," she said, regretfully. "But the weather has been cooler recently and we haven't wanted to get in the water. It's not ... "
 
"Ah, ha!" I said, interrupting her. "So you're not doing your water aerobics."
 
"We were," she defended herself. "It's just been so cold it's uncomfortable."
 
"Well," I said, finally mollified. "I guess you're doing pretty well. Good work, Mom. Tell Dad I said so. And tell him to call me!"
 
"I will," said Mom. "But we're pretty busy. We'll call you when we can."
 
I accepted this gracefully. We said we loved each other and hung up.
 
After we hung up I stood there and stared down at the phone. "Just like my kids," I fumed. "They're all the same. They only call when they need something. And here I am, calling them, getting no response and imagining they're all dead or sick or kidnapped, or something."
 
It ain't fair.
 
 
11:20 am est

Friday, February 3, 2006

A Fresh Start for Libby
 
My dad Babe D'Ignazio and my mother Libby D'Ignazio are now happily settled in their home in Key Largo, Florida. This is a great opportunity for both of them to engage in healthful activities. They have great prospects:
 
1. The weather. The temperature stays in the 60s, 70s, and 80s. This will encourage Mom and Dad to get outdoors and enjoy themselves without fear of slippery, hip-breaking ice.
 
2. Singing. Mom has already re-enlisted in her singing group, The Ginger Snaps. This gives her opportunities to socialize and to pursue her passion of singing.
 
3. Biking. Mom has a bicycle and there are lots of safe roads around her apartment where she can bike every day.
 
4. Tennis. My brother Owsley vowed to take Mom over to one of the several nearby tennis courts. Mom needs some practice, after months of hiatus, to regain her "tennis legs." She seems motivated to return to her old schedule of doubles tennis matches once or twice a week.
 
5. The pool. Mom and Dad's condo pool is a hundred feet from their back door. They can walk or drive the golf cart to poolside and do water aerobics every day. This is one sure way for my frail dad to get some exercise. It is a social time because they do their water exercises together.
 
I'm hopeful that Mom and Dad will flourish in Florida. My brother Owsley is there for the next couple weeks to cajole, nag and bully them into being active and healthy. They have lost many of their support amenities in Media. But Florida offers them a great opportunity to keep active while they are still independent and on their own.
 
 
6:47 am est

Thursday, February 2, 2006

The Link Between Alzheimer's Disease & Diabetes
 
Two years ago Chicago's Rush University Medical Center published a study linking Alzheimer's Disease and diabetes. According to the study:
A statistical analysis found that people with diabetes had a much higher rate of developing Alzheimer's disease than those who don't have diabetes. Age is still the greatest risk factor for developing Alzheimer's. One in 10 Americans over 65 and nearly half of those over 85 have the incurable, progressive brain disease.
Yesterday an article on a scientific study appeared in the Raleigh News and Observer that showed that the GlaxoSmithKline (GSK) diabetes drug Avandia (rosiglitazone) can be used to combat Alzheimer's. Scientists speculate that the drug helps regulate the way the body uses glucose. According to the article:
Researchers have long suspected that glucose levels in the blood affect the brain's ability to function, because glucose is the brain's primary fuel. Diabetes damages blood vessels, which can cause organ failure, blindness and amputations. Diabetes also increases the likelihood of strokes, which can lead to dementia.
Researchers tested the effects of Avandia on 450 patients with mild to moderate Alzheimer's Disease. Patients who have a genetic mutation that increases their risk of Alzheimer's Disease showed significant improvement after taking the Avandia.
 
(For more information on genetic mutations and Alzheimer's Disease, see my two blog articles: "Untangling the Origins of Alzheimer's Disease" -- Part One and Part Two.)
 
Between 40 percent and 50 percent of all Alzheimer's patients carry this genetic mutation. Avandia showed no improvement on patients who did not carry this mutation.

The mutation affects the way a gene in our body regulates fatty acids. These acids come from the breakdown of glucose. In diabetics the body's breakdown of glucose is defective.
 
The hope in this research is that drugs like Avandia might be prescribed to high-risk persons carrying the genetic mutation. They could begin taking Avandia months or years before showing any sign of Alzheimer's Disease as a preventive measure.
 
11:12 am est

Wednesday, February 1, 2006

Hurricane D'Ignazio Passes Through Town
 
Whew!
 
I'm still recovering from my parents' and brother's visit to our house. And it's almost a week since they left.
 
Andy and NekoMom and OwsleyJanet, John, Mom and Anne
 
These pictures give you an idea what our house was like for three days. Neko the Macaw and Andy the Dog were fascinated with each other. They stared, barked and squawked at each other for three days.
 
My mom was in great form. She happily got in my car and rode all over Raleigh to Laura's school, to an iMax movie about the Vikings, and to various restaurants and pubs around town.
 
Our friend Anne came over the last day, and we watched the DVD about Mom's life and sang hymns from the Methodist Hymnal. Then Mom began singing old, old songs from her youth. She has a beautiful harmonizing alto, and everyone sang with her.
Dad and Owsley
 
Dad was in good spirits, too. He and Mom rode hundreds of miles to get to our house in North Carolina. Without a whimper they climbed back into the car for a visit to Laura's school and a dinner at their favorite Raleigh restaurant, the 42nd Street Oyster Bar.
 
The next day we had lunch at Hibernian, an Irish pub. In the picture you see my brother Owsley escorting my dad across the street in front of the pub. Dad is sporting the cane he made out of a sawed-off broom handle.
 
On Thursday morning, the dog and the four adults climbed into their two cars and drove off with their speedboat to Florida. Even two hours of bumper-to-bumper traffic in downtown Miami didn't faze them. They arrived in Ocean Reef, on Key Largo, at midnight Friday night.
 
Judging from the phone calls I've had with them since, they are happily getting settled in Florida. Meanwhile, I'm here in North Carolina, still recovering from the effects of "Hurricane D'Ignazio."
 
2:27 pm est


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