Friday, April 28, 2006
Playing with the Brain's Lego Blocks
Today's the day that my parents begin their trip home from Florida to Pennsylvania. As soon as it gets a little later
in the morning (it's now around 6:40 AM), I'll call Key Largo and see when they are going to leave.
I don't think we'll see them this time as they drive north. Owsley said they are going to push on and get to Pennsylvania
as quickly as they can. That means none of Dad's famous "diversiones" and "tangenciales" like Louisville, Kentucky, Charleston,
South Carolina, or even Raleigh, North Carolina.
I will say travel prayers for them today. And I'll report in this blog about their trip.
IT'S ALL IN HOW YOU CUT THE NOODLE
One of the mysteries in Alzheimer's research is that some people (as discovered in postmortem autopsies) have
gooey globs of protein in their brains, yet they never exhibit any signs of Alzheimer's or other forms of dementia. Yet it
is these protein clumps (along with protein tangles) that are supposed to cause the neuron damage and brain shrinkage characteristic
of Alzheimer's.
What makes these people special?
Two hundred mice at the Buck Institute on Aging may offer a clue to help us solve this mystery. According to a report
this week in at
myDNA.com the mice have Alzheimer's telltale senile plaques, but they don't show any memory loss or brain shrinkage.
Buck scientists genetically engineered the mice to develop the protein plaques in their brains. But as they were doing
this, they messed around with some of the amino acids in the protein (APP -- Amyloid Precursor Protein) that is the trigger
for the plaques. Usually the APP protein "chain" breaks down into lots of little amino-acid fragments called peptides. The
peptides start the formation of the protein clumps that lead to Alzheimer's.
In these 200 mice this still happens. But Buck scientists, working on a
new theory about Alzheimer's origins,
cut the APP protein into different length chains. Think of
the protein as a tiny, microscopic Italian
fusilli (corkscrew) pasta noodle. The twisted strands of the noodle, in
the protein, are made up of amino-acid chains. Usually the noodle breaks a certain way to launch the formation of the gluey
protein clumps. But the Buck scientists cleverly blocked the cut at the tailend of the protein noodle. And their
intervention made all the difference.
The mice who received the gourmet "sliced noodle" proteins still developed the protein clumps, but the lumps had no effect
on their memories or the size of their brains. The mice continued to behave normally!
MEMORY SWITCHES THAT WORK BOTH WAYS
The Buck Institute researchers focused on the last 31 amino acids in the APP protein because they are
working on a new theory of Alzheimer's Disease. They speculate that the protein clumps and tangles are not the only causes
of brain degeneration in Alzheimer's. What causes Alzheimer's damaging effects, they say, is that the protein fragments
from the APP protein interfere with the brain neurons' switching ability.
If we think of memories in the brain as Lego Blocks, then most of the brain's memory activity is spent in building Lego
Block structures (new memories), and in rearranging Lego Blocks (reconstructing, recombining and removing
memories).
What triggers all this Lego Block movement of memories around the brain? Biochemical switches. If the switches
are set to "forward" the brain forms new memories. If they are set in reverse, the brain reconstructs old memories.
Buck scientists believe that the APP protein fragments mess with these brain switches, and they end up stuck in reverse!
No new memories can be formed.
Their solution was simple. They blocked the APP protein from being cut anywhere across those final 31 amino acids,
and, voila, the mice's memories and brain functions remained intact.
I WILL KEEP YOU POSTED.
This is an exciting, new area of Alzheimer's research. I will keep you posted on the scientific world's reactions
to the Buck Institute experiments.
Thursday, April 27, 2006
Can I Catch Alzheimer's from the Water?
The United States will see a 44 percent
increase in individuals with Alzheimer’s disease by 2025, with the Western and Southeastern states to be hit the hardest.
The study, "State-Specific Projections Through 2025 of Alzheimer Disease Prevalence," published in the May 11 issue of Neurology, reinforces findings from previous
studies showing that the United States will face a devastating blow from Alzheimer’s disease unless science finds a way to
slow the progression of the disease or prevent it.
According to U.S. Census data, the size
of the older population (65 and older) will double over the next 25 years, growing to 70 million by 2030 when the youngest
of the post-World War II baby boomers will be more than 65 years old. Because age is a known risk factor for Alzheimer’s,
the United States could realize a 70 percent increase in the prevalence of Alzheimer’s disease, with an estimated 7.7 million
people affected.
Why is Alzheimer's Disease growing more common? Partly it is because we are living longer and there
are more of us. But Alzheimer's is not part of the normal aging process. It is a disease. Where does this disease come from?
THE ENVIRONMENT
I was at a spin (stationary cycling) class at the gym the other day. As we pedaled, we whined. We whined
because pedaling a stationary bike at 6 AM is not a fun thing to do. But we also whined because we were all sniffling, wheezing
and sneezing. The main topic of our whining was pollen. North Carolina is a noted pollen-producing state. It may
be among the top ten pollen producers in the country. As a result of this pollen pollution most of us spend each
spring wandering around bumping into doors and walls, trying vainly to see through our watery, itchy, swollen eyes. We sneeze.
We cough. We complain. The pollen wafts through open windows and coats our furniture. It covers our cars. We wear it as another
layer of clothing on our entire bodies--our arms, our faces, our hair. We breathe it in. It coats the insides of our lungs.
It's everywhere!
WATCH OUT, BUSTER!
Pollen is not the only thing we breathe in. As we go through our day, we inhale millions of airborne
micro-particles, too small to see, but not too small to have a big impact on our bodies.
Have you ever walked into a room and felt a bit uncomfortable? Maybe your nose gets congested. You may
feel like you have asthma but you know you don't suffer from asthma? Or your nose starts running. Or you mysteriously cough
or sneeze?
Watch out, buster. You have just run into a micro-particle. Or maybe two or three.
For example, when I walk into the clothing department of any major department store, I immediately experience
these symptoms. It's not a full-blown attack. It's a micro attack. But I still feel a little worse than before I
came through the door.
What I'm experiencing are the airborne chemicals, known variously as VOCS -- Volatile Organic Compounds
-- and particulate matter that are given off by the clothing and make a beeline for my mouth, my lungs ... my brain.
ALUMINUM AND ALZHEIMER'S
Aluminum has no biological function. We cannot metabolize aluminum. It is a known toxin and neuro (brain)
toxin. That means it's a poison. It is a poison that we are exposed to every day--in our air, our water, in our cosmetics,
our food dyes, our cooking foil, our pots, pans, and pails.
It is only one of the hundreds of poisons in our modern, sophisticated high-tech environment. There
is no way to avoid it.
Does aluminum cause Alzheimer's?
The jury is still out. Experts are divided about the impact of aluminum. However, as a "heavy metal"
there are lots of stories (anecdotal evidence) that finger aluminum as a culprit in Alzheimer's, in particular, and dementia,
in general.
THE SAD STORY OF CAROLE CROSS
Take the story of Carole Cross, a British woman who died recently of Alzheimer's Disease, 16 years after
an industrial accident poured 20 tons of aluminum sulfate into her drinking water. After her death, a biopsy was performed
on Carole's 58-year-old brain. Doctors found early-onset Alzheimer's Disease in Carole's brain, along with an extraordinary
amount of aluminum.
Aluminum ions are small and highly charged. They act like "super glue" when they bump into protein molecules
in our bodies. When aluminum gets into the brain it hijacks certain brain proteins that are needed by neurons to send and
store messages and remain healthy. When these proteins are hijacked the neurons begin to die. Other proteins (amyloid and
tau proteins) take over and begin forming the gluey, tangled masses in brain tissue characteristic of Alzheimer's. This downward
spiral continues until, eventually, a person is robbed of all brain function and dies.
WHAT CAN WE DO?
I have written about aluminum in this blog as an example. It is only one of the thousands of VOCs and
other micro-particles that we encounter each day. We can limit our encounters with some of these particles. But most encounters
are unavoidable.
Cooking with aluminum cookware is safe, unless you cook with highly acidic foods like tomatoes.
Drinking water is relatively safe, since your local government monitors the aluminum in your water and
keeps the level of aluminum at "safe" levels.
And a direct link between Alzheimer's and aluminum has yet to be proven.
I only brought up aluminum because I was thinking about why Alzheimer's Disease is growing so rapidly
in our society. A miniority of Alzheimer's cases are due to a gene that some people carry that increases their risk of getting
Alzheimer's. But in most cases I think our bodies are not the culprit. I think it's the micro-particle soup in our
environment that is to blame.
As we wade through these invisible particles each day, we don't "catch" Alzheimer's. Our bodies' natural
defenses act as a shield and protect us from the assault. But if our Alzheimer's immune system is weakend or breaks
down, then these particles can get in and do their damage.
Next time at spin class when everyone is whining about the pollen, I'm going to smile. A runny nose
and a few sneezes are a piece of cake compared to all the not-so-friendly "pollens" that can infect our brains.
Wednesday, April 26, 2006
Babe and Libby: Two Peas in a Pod
I talked for awhile with my brother Owsley on the phone yesterday. In two days he and Tim will drive my parents from
Florida back up to their home in Media, PA.
"When Mom and Pop get home," Owsley said, "they will need someone to look in on them every day."
"Why is that?" I asked.
"They just will. They're going to need help. Mom gets up in the morning and makes Pop his cereal. That's a good routine
for her. But to get started, she has to ask him where they keep the cereal. She can never remember from the day before."
"And Dad?" I asked.
"He's fine mentally, but he needs help washing--especially his back. He takes forever getting up and getting dressed.
He needs help getting into vehicles and back out again. He's moving very slowly when he moves at all."
"Mom's doing fine, physically, right?" I asked.
"She is all right," said Owsley. "But she won't do anything unless it suits her. She won't even play tennis. And, believe
me, I tried. But she absolutely won't play. On the other hand, she did ride her bike today.
"What concerns me most," continued Owsley, "is that Pop is so frail. All he needs is one fall, and things could get pretty
bad."
"You mean he breaks a hip?" I asked.
"He breaks a hip, then Mom has to look after him. That won't work. That's the point we have to hire someone to help look
after them. They will both need a lot of care."
Owsley's right. Mom's health is deteriorating gradually. But Dad may be our immediate worry.
It's funny. Back in his forties and fifties, Dad used to tell us kids that "the wheel keeps turning" and that he
had lost his father and then his brother, and that he wasn't going to be around long. "We all die," was his solemn advice.
"I'm going to die. You're going to die. We all die."
At first we kids used to take him seriously, which made us dreadfully afraid that he wouldn't be around much longer.
Later on, when he didn't die, we ceased to listen to these gloomy, mournful dirges. Dad started looking like Eeyore, in Winnie
the Pooh. He talked dark thoughts, but he was fine. He was in good health. He was active, healthy, vigorous. It wasn't his
time to die.
But that was then, and this is now. Now my father's death seems much more imminent. He's kept us distracted watching
Mom.
I've been praying hard for my mother each day. It's time I started praying for my dad.
Tuesday, April 25, 2006
If Disaster Hits, Will Mom Be Safe?
Last fall inadequate disaster preparedness at nursing homes in Louisiana led to the deaths of nearly three dozen elderly
nursing home residents.
This is the kind of news that makes my father swear my mother will never be put in a nursing home.
Or any other kind of facility either.
Dad is Mom's primary caregiver. To help give caregivers more confidence, residential facilities for the elderly need
to cooperate with their own associations and with federal and local officials to set up more elaborate procedures for disasters.
If you are looking for a residential facility for a loved one, it is important to ask each facility "What is your plan
in the event of an emergency?"
Disaster-preparedness plans being considered have some of the following elements:
- A building evacuation plan (especially for Alzheimer's residents and physically handicapped residents)
- A relocation plan with an evacuation site and a backup
- Elaborate communication procedures to swiftly locate family members and outside caregivers
- A plan for medical care at the evacuation and relocation sites
- An agreement with a transportation provider
- A plan to move all medical records
- A 3-to-7-day supply of personal items for each evacuated resident
- Constant monitoring and charging of battery-powered TVs, radios, cell phones
- A two-week supply of bottled water
- A two-to-four-week supply of residents' medications and medical equipment (e.g., feeding tubes)
Monday, April 24, 2006
What? Mom Is Napping?
Yesterday I talked with my brother Owsley in Florida. This is the week that Owsley, my brother Timmy, and my mom and
dad are driving north from Key Largo back to Pennsylvania.
I asked Owsley if I could talk with Mom. He said she was just waking from her nap.
"Nap!" I exclaimed. "Mom doesn't 'do' naps."
"She does now," Owsley said. "In fact, this was her second nap of the day."
"Is this a regular thing?" I asked in disbelief.
"This is her first two-nap day," Owsley said. "But she almost always takes a nap, now, usually with Dad."
NAPS AND ALZHEIMER'S DISEASE
After I got off the phone with Owsley I began worrying that Mom's new napping behavior might be related to her Alzheimer's
Disease. I got on the computer and Googled "naps" and "Alzheimer's." According to the
Alzheimer's Information Site:
Insomnia and daytime drowsiness is a common problem in many older adults, particularly those with
Alzheimer's disease. Studies indicate that up to 44 percent of those with Alzheimer's suffer from sleep problems, which can
contribute to physical deterioration and mood problems like depression. For family members who care for those with the disease,
being awakened at night by loved ones who exhibit behaviors such as wandering, getting out of bed repeatedly, and talking
in bed can be trying and make care even more difficult.
STRATEGIES FOR CAREGIVERS
The article on the Alzheimer's website gave several helpful pointers to caregivers who are worried about their
loved one's sleep patterns:
-
Caregivers should keep a "sleep log" that tracks when their loved one goes to sleep and when they wake up.
-
Once a healthy pattern is established it is a good idea not to vary it daily by more than 20 minutes.
-
Anything that regularly wakens an Alzheimer's person at night (barking dogs, traffic, alarms, etc.) should be avoided.
-
A person with Alzheimer's shouldn't nap after 1 PM or for more than 30 minutes at a time. Instead they should be engaged
in stimulating activities that make them more alert so they can gently be dissuaded from napping.
-
Caregivers and their loved ones should go on daily walks outdoors (if possible) to raise the metabolism of the Alzheimer's
person.
-
An Alzheimer's person should receive "light therapy" each day, particularly late in the day (the last 3 hours before
bedtime). There is actually a product on the market to help with this: the SunRay light box from the
SunBox company in Gaithersburg, MD.
A study was conducted in 2005 in which patients were put into two "sleep groups." One group followed the tips outlined
above. The other group followed their normal (unregulated) schedule, received no light therapy, and took naps whenever they
liked.
After six months the group that followed the sleep therapy strategy woke up 5.3 fewer times per night. They slept an average
of 36 extra minutes each night. They experienced less daytime drowsiness and fewer incidents of depression.
I'm going to pass this news on to Owsley, Tim and Lisa. My only worry is that Mom and Dad are returning to Media. In Media
Owsley will return to his normal home, and Dad will resume his job as Mom's primary caregiver. Maybe he's the one I should
talk with.
Friday, April 21, 2006
A Note from an Old Friend
Yesterday I had the pleasure of hearing from an old friend, Josh Braun. Josh is a gifted classroom teacher and has made
some amazing multimedia presentations with his young elementary-aged children. I used to show his videos at conferences I
attended.
I told Josh about this blog when he first emailed me to catch up. He went out on the blog and read many of the entries,
especially back at the beginning.
Here are his comments:
Sorry to hear about your
mom. This must be a difficult time for you. I spent some time reading your blog. I bet the daily writing
is a bit like medicine for your soul, helping you clear your head. What a nice digital story for future generations
to read. Fitting for a special lady. I was particularly drawn to the quote below:
“Where had my mom gone? The person
I've come to my whole life, the person I can tell everything to, suddenly didn't have a clue what I'd been doing the last
year of my life. It was as if that whole year just shriveled up and ceased to exist. Without mom to witness its existence,
who's to say it was real. Mom had always been my reality check. I looked in my mom's eyes and I saw me. I told mom who I was
that day, that month, that year. And she always responded, "Yes, I know! That's great!"
My dad passed away several
years ago from cancer . . . my mom self destructed (being totally dependent on him). I often ask “where has she gone”.
I
was touched by Josh's comments, and I appreciated his sharing with me about his mom and dad.
I
would love to hear your personal stories about your aging mom, dad, grandparents, etc. Please let me know if I might share
them in this blog.
Josh's
remarks reminded me that we are all in this together. And it really helps to share our experiences with each other.
Thursday, April 20, 2006
Libby Is Going Home!
I heard from my brother Owsley yesterday that the arrangements for Mom returning to PA have finally been made. Next Wednesday
(April 26th -- my sister Lisa's birthday) my brother Tim will fly from Philadelphia to Florida. On Thursday he and Owsley
will begin the drive back North. Tim will drive my parents, and Owsley will pull the boat behind his car. Andy the dog will
ride with Owsley. The caravan will snake its way up Highway I-95 and arrive in Media, PA, on Saturday or Sunday.
The family is going home!
ALZHEIMER'S CREEPS UP
Yesterday the National Center for Health Statistics (NCHS)
reported that 50,000 fewer people died between 2003 and 2004, the biggest one-year decline in decades.
US citizens are living longer, healthier lives. The biggest exception is Alzheimer's Disease. The mortality rate from
most of the top ten causes of death in the U.S. decreased, while Alzheimer's went up.
In 2003 Alzheimer's was the 8th leading cause of death in the U.S. In 2004 it was seventh. The death rate from the
seventh leading cause of death, influenza and pneumonia, dropped 7.3 percent. Meanwhile the the death rate from Alzheimer's
increased by 1.4 percent.
Here are the top ten fatal diseases in the US and the number of people who died from them in 2003-2004:
- Heart disease - 654,000 deaths
- Cancer - 550,000 deaths
-
Stroke - 150,000 deaths
-
Chronic lower respiratory diseases - 123,000
-
Accidents - 108,000
-
Diabetes - 72,800
-
Alzheimer's disease - 65,829
-
Influenza and pneumonia - 61,472
-
Kidney disease - 42,762
-
Septicemia (blood infection) 33,464
Wednesday, April 19, 2006
Autopsies, Diets and Mom
It's a potpourri day. I have my 7 AM meeting at Whole Foods Market in just a few minutes, so I'm going to touch on just
a couple points.
WHO'S ON FIRST?
And when is Mom coming home?
Both these questions are more complicated than they first appear. With regard to Mom, it's not certain when she's
coming home. I told my brother Tim on the phone yesterday that I thought I was able to fly down to Florida to get Mom
and Dad next Wednesday. But then I talked to my wife Janet and she is going to be out of town all next week. That means I
should be in town to be with our 17-year-old daughter Laura.
Maybe that means I fly down the following Wednesday. But is Dad willing to wait that long?
TRY A MEDITERRANEAN DIET
While you are waiting to see the outcome to the soap opera "When Is Libby Coming Home from Florida?" you can try putting
yourself on a Mediterranean Diet. According to a new
study, people who follow a rigorous Mediterranean diet can reduce their risk of contracting Alzheimer's Disease (and other dementias)
by almost 40 percent.
Here's what to eat (and not eat):
- Fruits
- Vegetables
- Legumes (soybeans, peas, beans, lentils, etc.)
- Cereals
- Some fish
- Some alcohol
- Little Meat
- Little Dairy
Even the researchers said their data were not conclusive. But they said they felt there was a strong association between
the diet and the reduced risk of dementia.
WHERE HAVE ALL THE AUTOPSIES GONE?
The only conclusive way to prove Alzheimer's Disease is through a postmortem autopsy. However, fewer hospitals are performing
autopsies, and then only under special circumstances.
Back in the 20th century, more than half of all deaths resulted in an autopsy. Today, fewer than 10 percent of hospital
deaths are autopsied. Experts speculate that doctors coming out of medical school today are more likely to see an autopsy
on a "CSI" TV show than in real life.
Many hospitals perform autopsies at a rate of only 2 percent to 4 percent of all deaths.
According to one doctor:
We are losing a very valuable educational tool. This decline is not positive for patient care.
Without an autopsy there is no way for a doctor to know if their patient had Alzheimer's Disease.
Given the autopsy statistics, most patients with some form of dementia die without a sure diagnosis of Alzheimer's
Disease. Isn't this something a doctor would want to know?
Tuesday, April 18, 2006
Getting Libby to PA: A Story Told in Two Parts
We are all wondering how Mom will get from Florida back to PA. She and Dad are almost ready to return. Owsley would like
them to fly, but Mom absolutely refuses to fly.
Besides, they have a boat to bring back, and a dog, and two cars.
My brother Tim called yesterday and proposed that I fly from North Carolina to Florida. Owsley can drive his car and
pull the boat. Andy the dog will ride with Owsley. I will drive Mom and Dad in their car.
The new twist is that I only drive them to North Carolina. Tim will fly to North Carolina and drive them from here back
up to Pennsylvania.
I told Tim this is a great plan, but I have a conflict with the weekend of April 28th, since I will be helping on a church
fund-raising event that weekend. I suggested that I fly down the following week, and we drive back then.
IT'S ALL UP TO BABE
My Dad (Babe) is the kingpin of the family. We can all make plans, but they only work if Dad goes along with them. I
called my brother Owsley last night and asked him if it will work for them to drive back the week following April 28th. I
know the first thing Owsley will do is check this out with Dad.
Dad is unresolved about leaving Florida. At first he didn't want to go there. Now he's not sure he wants to leave. I
suspect this is because when he returns to Pennsylvania, he will no longer have his 24-hour caregiver. That caregiver is,
of course, my brother Owsley. You can't find a better caregiver than Owsley.
When the family caravan (Owsley, the boat, Andy the dog, my parents, Timmy and the two cars) arrive in PA, then Tim will
return to his family. Owsley will go back to his own life.
My parents will be back in their apartment on their own. Owsley will no longer be my Mom's primary caregiver. Who replaces
him?
Babe. My dad.
If I were dad I would also be dragging my feet about returning. Being a full-time caregiver for a person with Alzheimer's
is a stressful, demanding, and frustrating job. Dad has had a wonderful assistant in Florida. But he will be on his own again,
once they arrive back in their home town of Media.
We will all have to step in and help Dad. Owsley is a hard man to replace.
Monday, April 17, 2006
I Never Saw a Purple Cow
I never saw a purple cow.
I hope I never see one,
But I can tell you, anyhow
I'd rather see than be one.
This is the poem that poet Don McIver shared with Alzheimer patient Phyllis McGuire. McGuire is 82
and a resident at a nursing home in Albuquerque, New Mexico. McIver started reading the poem, but McGuire finished it for
him. McGuire was delighted to hear the poem. She said she hadn't heard it since her early school days.
Don McIver is part of the Alzheimer's Poetry Project. Poets participating in the project take classic poems into
nursing homes and do dramatic readings for nursing home residents, particularly those who suffer from dementia.
POOLS OF CRYSTAL-CLEAR MEMORY
A person suffering from Alzheimer's struggles remembering what they did ten minutes ago. They live in an eternal present.
Their new memories slip away, like wisps of smoke, almost as soon as they acquire them.
But buried deep below the memory murk on the surface are pools of crystal-clear memory -- poems, events, people, loves,
hates, thrills and tragedies, words and songs -- locked away in a person's intact long-term memory.
The Alzheimer's Poetry Project unlocks these memories and brings them to the surface. As they bubble up, they can give
a memory-impaired person great pleasure and great pride.
For example, when Don McIver began performing the classic poem "Billy Boy," Phyllis Mcguire recognized it. Her lips broke
into a playful grin and she recited all 44 lines of the poem.
AMAZING STORIES
The Alzheimer's Poetry Project is about reaching out and touching people who have been given up for lost.
When Max Glazner, the founder of the project, read Robert Burns' "A Red, Red Rose," to residents of a nursing home, he
noticed a woman whose head was bent over and who appeared to be sleeping. He bent over and began whispering the poem into
her ear. Suddenly he took his hand and squeezed it. She didn't let go until he finished the poem.
At another nursing home, Glazner noticed a man who seemed passive and disconnected from his reading. He began a new poem,
Henry Wadsworth Longfellow's "The Arrow and the Song." When he got to the line "I Shot an Arrow in the Air" the man looked
up and said "Where it lands I know not where."
FISHING FOR MEMORIES
These sudden miraculous connections show that there is still more to an Alzheimer's patient than meets the eye. It is
what motivates artists, poets, authors and musicians to visit nursing homes and honor their residents as people with real
feelings and real memories.
But you don't have to be an artist or a poet to make this connection. You can play music, show pictures, and read books
and poems to someone with Alzheimer's. Just the one-on-one attention will be nurturing and therapeutic. And, who knows, you
may tap a memory and cause it rise to the surface.
You will both be delighted!
FOR MORE INFORMATION
To get a copy of the book of classic poems that poets read to Alzheimer's patients go to
www.alzpoetry.com. "Sparking Memories: The Alzheimer's Poetry Project Anthology" (Poem Factory Press, 128 pages, $15) is a collection of classic
poems, edited by poet Gary Mex Glazner. All proceeds from sales of the anthology go to putting poets into assisted living
centers to work with the residents.
More stories about the project can be found JM Barol's article, "
Poetry for the Moment," in the April 14, 2006 issue of the Albuquerque Tribune.
HAVE YOU EVER SEEN A PURPLE COW?
Max Glazner asked John, a man who was diagnosed with severe Alzheimer's Disease, if he had ever seen a purple cow. Glazner
was surprised when John looked him in the eye and said, "No, but I married one."
Friday, April 14, 2006
It's Not Always Alzheimer's
This blog focuses on Alzheimer's Disease. It is impossible to tell, for sure, if a person has Alzheimer's until after
they die and an autopsy has been performed. But the experts at the Mayo Clinic say my mom has Alzheimer's. I trust them, and
I've been looking at Alzheimer's Disease in this blog.
But Alzheimer's is not the only kind of dementia.
According to the Mayo Clinic
website, the three most common forms of dementia are:
- Alzheimer's Disease
- Vascular Dementia
- Lewy's Body Dementia
Alzheimer's disease is associated with protein clumps and tangles in the brain. As the disease progresses, neurons die
and are encased in lumpy protein masses. As the neurons die, brain function decreases.
Vascular dementia is caused by a series of mini-strokes in the brain. The disease takes different forms depending
on where the strokes occur. The disease often follows a major brain stroke.
Lewy's body dementia is associated with abnormal round structures (Lewy bodies) that develop in cells in the mid-brain.
All three forms of dementia are irreversible. All three forms of dementia have some symptoms in common (e.g., memory loss,
disorientation, forgetfulness). A person may have more than one form of dementia at the same time.
REVERSIBLE DEMENTIA
The big three forms of dementia are not reversible. However, many dementias and dementia-like symptoms are reversible.
Dementia has many causes. Many of these causes can be corrected, and the dementia is relieved or disappears. Treatable
dementia may occur after some of the following causes:
- High fever
- Dehydration
- Vitamin deficiency
- Poor nutrition
- Bad reactions to medicines
- Problems with the thyroid gland
- A minor head injury
According to columnist Glenn Ellis, emotional issues can also produce dementia-like symptoms:
Sometimes older people have emotional problems that can be mistaken for dementia. Feeling sad, lonely,
worried, or bored may be more common for older people facing retirement or coping with the death of a spouse, relative, or
friend. Adapting to these changes leaves some people feeling confused or forgetful. Emotional problems can be eased by supportive
friends and family, or by professional help from a doctor or counselor.
If you notice that a family member or friend is showing Alzheimer-like symptoms, don't jump to conclusions. It
may not be Alzheimer's at all. It may be a temporary condition that is fully treatable.
Your job is to intervene and show them love and support, and get them to a knowledgeable doctor.
Thursday, April 13, 2006
How Do We Get Mom Back from Florida?
Yesterday I spoke with Owsley and learned he has a problem retrieving Mom and Dad from Florida where they have been happily
living for the past two and a half months. He wants Mom and Dad to fly home to Pennsylvania. Dad is for it. But Mom insists
(like her mother before her) that she is not going to fly.
So Owsley called his friend John Tercha to help them drive from Florida to Pennsylvania. But John unfortunately can't
come. He's very busy and his son is getting married next month.
Owsley called to see if I could fly to Florida, drive my parents from Key Largo to Philadelphia, and maybe even spend
a few extra days of "quality time" with them.
I'm mulling over this problem now. Since I haven't visited my folks in Florida, this is probably a good thing to do.
But how do I know Dad is ready to go home? He's already told Owley he'll leave Florida when he's good and ready, and
not a moment sooner.
My next step is to talk with my brother Tim and my sister Lisa to see what they think we should do. (I'll let you know
what I hear.)
There is no telling when the exodus will begin. And who knows what form it will take.
Wednesday, April 12, 2006
Tax Filing Problems Can Be a Wake-Up Call about Alzheimer's
In three days it will be April 15th, the deadline for filing federal income taxes. Has your elderly mother, father, aunt
or uncle filed their return? Have you asked them?
IRS officials say that tens of thousands of seniors stumble this time every year. They file incomplete returns or no
returns at all. Officials say the problem for many of these citizens may be Alzheimer's Disease. They know the problem
is huge, but they have no way to track it.
The problem is compounded by seniors' unwillingness to sacrifice their independence or admit there is a problem. For
example, Jim Saye of Houston got his first clue that his mother had Alzheimer's when he found her tax forms on a table, unfinished
and full of obvious errors.
Doctors say that financial decision-making is one of the first skills to be hit by Alzheimer's Disease.
Tax time is a challenging time for people whose mental faculties are intact. It can be a stressful, impossible time for
older family members who are in the early stages of dementia. But their natural impulse is to deny there is a problem or to
hide it from other family members. After all, they are the responsible one who has always managed the finances. It is a terrible
thing to admit that you can no longer be depended upon.
According to an article in the
Houston Chronicle, The IRS is surprisingly understanding about Alzheimer's Disease. If they alerted by a family member, they will work with
a family:
They say they can waive penalties and collection actions if they are informed about the impairment.
They also allow people to name a third-party designee on their Form 1040, or even file a separate
form that designates a family member as a power of attorney.
"When these situations take place, we are extra-sensitive in addressing the problem," said William
Sonnack, a taxpayer advocate in Houston's IRS office.
Tuesday, April 11, 2006
Why Doesn't Grandma Remember Me?
More than 4.5 million Americans have Alzheimer's Disease. This number is supposed to shoot up to 16 million over the
next couple of decades. When a teacher recently asked a class of third-graders in Massachusetts if they knew someone with
Alzheimer's, half the students raised their hands.
Alzheimer's is not just a problem for the aged and their aging caregivers. It's also a problem for children. Children
have to learn how to cope when an older member of their family or the family of a close friend comes down with the disease.
It is heart-wrenching for children and their parents when their beloved grandparent doesn't recognize them. Does this
mean they have stopped loving them?
OUR MEMORY IS A TAPE RECORDER
Joyce Simard, a teacher in Massachusetts, is a self-appointed evangelist to children to explain to them about Alzheimer's
Disease. She plays the role of "Grandma Joyce" and pretends to have the disease so that children can gain firsthand experience
interacting with someone who has a memory loss.
In an
article in the Cape Cod Times
recently, Joyce said she likens memory to a tape recorder. When we are young the tape recorder works just fine, and these
memories (long-term memories) are stored away and can often be retrieved by a person with Alzheimer's. But when a person gets
Alzheimer's, the tape recorder breaks and doesn't store any new (short-term) memories.
Just because the tape recorder is broken, says Joyce, doesn't mean children can't continue having a close relationship
with a person with Alzheimer's.
Joyce visits schools around Cape Cod, Massachusetts. In each classroom she plays the role of a grandmother with Alzheimer's
and teaches the children coping skills as she and the children interact. Here are some of "Grandma Joyce's" key lessons:
- When you greet a person with Alzheimer's don't wait for them to identify you. Right away, remind them who you are. This
puts them at ease. If they forget while you're talking, remind them again. Do this gently and patiently, remembering their
"tape recorder" is broken.
- Show them how much you love them. If you are loving toward them, they will respond with love toward you. Don't worry about
being loved from before. Make them love you all over again just by being yourself.
- Bring things to trigger your loved one's memory. Pictures, old jewelry, newspaper articles, old clothes all help an Alzheimer's
patient recover old memories. It gives them great pleasure to remember old things and share them with you.
- Have fun! Laughter puts both of you at ease. Just because a tape recorder is broken doesn't mean you can't create new
experiences together. Be silly. Giggle. It's good for both of you.
- Last, don't worry about "catching" Alzheimer's. It's not that kind of disease. Feel free to hug, kiss, and cuddle with
your relative who has Alzheimer's. Children can be "helpers," too. The best way you can help is just be yourself and show
your love.
Monday, April 10, 2006
Earth to Fred! Earth to Fred! Where Is Your Mom?
Isn't that the question running through your mind?
I'm supposed to be writing this blog about my mother, Libby D'Ignazio, and her struggle with Alzheimer's Disease. Back
in October 2005 you read about my mom almost every day. You continued reading about her until late January of this year.
Then suddenly Mom didn't turn up quite so often.
What happened?
Late January is when Mom, Dad and my brother Owsley went to Key Largo, Florida. Up until January I had been visiting
my parents' home in Media, Pennslvania, almost every month. Each time I visited I lived in my parents' apartment with my parents
for several days. I had been doing that since last summer when Dad had a melt-down and told me I was a "negligent son." He
told me that Mom had a year of memory left. After that she wouldn't know my siblings, she wouldn't know me, she wouldn't know
Dad.
He frightened me and shamed me. And I became very attentive.
I stayed attentive until they went to Florida.
At first I thought that the Florida trip would be a fiasco. Mom's memory was going downhill. And Dad's physical health
was borderline. He is very feeble and I couldn't see him being Mom's caregiver in Florida without the support system of my
two brothers and sister Lisa in Pennsylvania. Also, the last time they went to Florida, in early 2005, Dad's health was bad
the whole trip. He caught a respiratory infection in Florida, and it didn't go away until he returned to Pennsylvania. Most
of their friends in Florida have died. I figured that Florida would be a disaster.
I was wrong.
In fact, they have thrived in Florida. In my blog I have given credit to my brother Owsley. He has stayed with them the
whole time, and he's been an excellent caregiver. In addition, my sister Lisa and her husband John, my sister-in-law Teri
and my niece Curry, and my brother Tim, his wife Nancy, and their children have all visited my parents.
But not Fred. I have stayed in North Carolina.
I feel pretty bad about this.
No one in my family has said anything so far. And when I call Florida, I never get anyone but Mom on the phone. She and
I talk for less than a minute about the weather. She tells me she loves me. I tell her I love her. And we hang up.
Every now and then Mom says to come see her.
So why don't I listen?
I feel I've fallen out of the family orbit again. I've been doing this ever since I the summer of 1963 when I was thirteen.
My family put me on a train in Paoli, Pennsylvania, that eventually wound its way to Mexico. I spent several weeks in Monterrey,
Mexico, at a Spanish-language school. When the school was over, I returned to Pennsylvania. But in some ways, I never really
came home.
Ever since then I have never made it back into the inner circle of the D'Ignazio family. I have this erratic orbit that
varies from Pluto to Mercury and then back to Pluto. Sometimes I find myself up close in the warm family center; sometimes
I'm out at the frozen, black edges.
The family wants me in close. They are always very encouraging.
So where is Mom? She's doing fine in Florida. In another couple of weeks I expect that she and Dad and Owsley will
make their trek north back to Pennsylvania. So Mom's fine. We know where she is, and, under the circumstances, she is doing
well.
The real question is "Where is Fred?"
And wherever Mom is, that's where Fred ought to go.
Friday, April 7, 2006
How Much Would You Risk for a Little Extra Time?
What would you risk if you could buy a little extra time for your loved one before they succumbed to the mind and memory-numbing
effects of Alzheimer's Disease?
Would you let scientists sample your father's DNA, his urine, his blood? Would you sign the papers for researchers to
tap your brother's spinal cord, or feed your mother powerful, experimental drugs?
Would you be willing for your mom or dad to have brain surgery?
This was the decision facing the family of Lola Crosswhite. And they signed on the dotted line.
In 2002, Crosswhite and seven other seniors with dementia underwent a risky brain operation to allow scientists to implant
a gene stimulating the production of nerve growth hormone into their brains.
Two of the original eight patients dropped out of the study due to internal bleeding in the brain. The other six patients,
including Crosswhite, took memory tests following the surgery and received positron-emission tomography scans of their
brains.
All the patients did remarkably well on their tests, and the brain scans revealed increased metabolic activity in their
brains, a sign of neuron rejuvenation.
Memory loss in all six patients was half the rate prior to surgery.
By contrast, Alzheimer's drugs now on the market only slow memory decline an average of 5 percent.
An autopsy on one of the excluded patients, who died of a heart attack during the study, revealed that the implanted
cells were making the nerve growth hormone. Nearby neurons appeared healthy.
Gene therapy put a huge brake on the progress of Alzheimer's in Lola Crosswhite's brain. Sadly, its effects were
short-lived. Recently Lola's memory has begun to decline at its old rate. According to Lola:
Even though I've had it all this time, but then I was better, and now I'm, you know, I feel like, well I know I'm sliding
back. So it's kind of, I'm going down the hill again."
So was the risky brain surgery worth it?
Yes, says Lola. And, yes, says her daughter. The gene therapy treatment doesn't cure Alzheimer's. It doesn't permanently
halt its effect on the brain. But it does "delay the disease for a significant and meaningful period of time," according to
neuroscientist Mark Tuszynski, the head of the
study.
Lola's daughter says the extra time with her mom was worth the risk:
She's a fighter ... she's not going to give an inch or anything ... We're going to go out fighting.
Thursday, April 6, 2006
Alzheimer's Drugs: Sidestepping the Problem of Nausea
Acetylcholine is an important chemical in the brain. It is a
neurotransmitter, the "bus" that carries our
thoughts and our memories from one neuron in the brain to the next. Alzheimer's Disease causes the acetylcholine to deteriorate,
thus slowing the transmissions. The enzyme that causes the deterioration is acetylcholinesterase (AChE). Three of today's
major Alzheimer's drugs--Pfizer's
Aricept (donepezil HCl), Novartis'
Exelon (rivastigmine) and Johnson & Johnson's
Reminyl (galantamine) are acetylcholinesterase (AChE) inhibitors. They slow the loss of acetylcholine which, in turn, slows the loss
of cognitive functions, including memory, thoughts, and ability to learn.
Sadly they do not keep working forever. As the disease progresses, greater doses of these drugs are required. But in
high doses the drugs cause Alzheimer's patients to have severe side effects, including vomiting, diarrhea and nausea.
Enter a new drug, Predix Pharmaceuticals' experimental PRX-03140, which acts to boost the natural acetylcholine in our
brain synapses, the pathways lying between the brains' neurons. A second clinical trial has begun with human
volunteers in which PRX-03140 is being given alongside the three major drugs, Aricept, Exelon and Reminyl.
I will keep you posted. But PRX-03140 could offer great advantages in allowing Alzheimer's patients to boost their protection
against the disease without any debilitating side effects.
Wednesday, April 5, 2006
Are You a Tea Drinker?
A Japanese
study published in March showed dramatic support for drinking green tea as a way to lower the risk of contracting Alzheimer's Disease.
The study followed 1000 Japanese citizens aged 70 and older. It found that people who drank more than two cups of green tea
each day had a 50 percent lower chance of developing cognitive impairment.
WHAT ARE THOSE LEAVES DOING IN MY WATER?
According to Chinese legend, tea was discovered in 2737 BCE when a couple of dry leaves from a nearby plant fell
into hot water being prepared for Emperor Shen Nung. The Emperor so liked the taste that he began experimenting with different
teas. News of the new imperial drink eventually spread throughout China.
True tea comes from the leaves of the Camellia Sinensis (Chinese camellia). Other plants brewed in hot water are
called infusions or tisanes. Green tea was the favorite of Americans all the way up to World War II when drinking the black
"Indian" tea first became popular.
Green tea is unfermented tea. Black tea is simply green tea that has been fermented. Oolong tea is semi-fermented tea,
a cross between green and black. White tea is a delicate tea derived from the tips of tea leaves.
A DRINK TO FIGHT ALZHEIMER'S DISEASE
All teas, especially green, white and black, have powerful
chemical compounds that fight Alzheimer's Disease. Here are some benefits of drinking tea:
Drinking tea is a simple (and delicious) way to lower the risk of Alzheimer's. Giant tea companies are certain to take
notice and are sure to offer us medicinal Alzheimer's teas in the near future.
Tuesday, April 4, 2006
Stem Cells from Umbilical Cord Blood to Fight Alzheimer's
Just a short blog today! On Tuesday mornings I transform and become Silvio the Storyteller at Whole Foods Markets in
and around Raleigh, North Carolina. Today I am off to tell stories to 30 preschoolers about wind power and the future of renewable
energy sources.
STEM CELLS AND ALZHEIMER'S
Stem cells are like "cell molds" or "cell templates." They have the ability to grow into the cells of other organs. If
we can harness stem cells and find a way to economically and ethically produce them we have a chance to create new organ cells
to replace cells lost to disease, atrophy or accidents.
Stem cells come from three major locations:
- Adult stem cells found in tissues
- Embryonic stem cells found in early stage human embryos
- Cord blood stem cells, obtained from the blood of the placenta and umbilical cord after the birth of a baby.
Scientists have recently had success injecting stem cells into mice who have the plaques and tangles of Alzheimer's Disease in their brains. Once they arrive
in the brain, the stem cells, derived from bone marrow, begin to digest the blobby protein in the plaques and tangles.
This clears the way for the remaining brain cells to function normally.
There has been a huge controversy about embryonic stem cells because they are "harvested" from fetuses and human
embryos and there are many people who feel this is morally wrong or at least questionable.
This leaves the other two sources: body tissues and placenta and umbilical cord blood. Stem cells are particularly
needed from ethnic and minority donors. Because the characteristics of stem cells are inherited, a patient is most likely
to find a match within his/her own racial group.
STEM CELLS FROM ALL THOSE NEW BABIES
One natural source for stem cells is placenta and umbilical cord blood from the millions of new babies who are
delivered in hospitals around the US every year. Unfortunately, most families are not aware that they can make a contribution
to stem cell research that is morally and socially acceptable to all groups. Also, hospitals and doctors have not taken the
lead since more work is required in saving the placentas and umbilical cord blood than in just disposing of it after the baby's
birth.
YOUR BABY CAN MAKE A CONTRIBUTION TO ALZHEIMER'S RESEARCH
The major program for donating to stem cell research is the National Marrow Donor Program. Click here to learn more about this program and how you can make a valuable contribution to Alzheimer's research.
[Note: My friend Anne Harrison inspired this column by sending me a web link on stem cells and Alzheimer's Disease.
Anne and her husband Rodney have two children, Logan and Daniel. They donated the umbilical cord blood from both Logan and
Daniel's deliveries to the National Marrow Donor Program. Good work, Logan and Daniel!]
Monday, April 3, 2006
National Memory Screening Day - November 14, 2006
Are you worried about getting Alzheimer's? Are you fearful that your parents or your friends are at-risk for Alzheimer's?
In this blog I have written about new methods to screen for Alzheimer's Disease. I have described some
of the exotic, new early-detection methods, including sampling your DNA, popping diabetes and low-cholesterol pills, and having
your spine tapped.
Ouch! (Especially the spinal tap.)
How about a simple, painless alternative?
On Tuesday, November 14, 2006, clinics, schools and other public buildings across the US will gear up for a national
memory screening event to assess people's risk of Alzheimer's. It's known as
National Memory Screening Day, and it is being sponsored by the Alzheimer's Foundation of America (AFA):
National Memory Screening Day is one of the highlights of AFA's ongoing national effort to promote early detection of Alzheimer's
disease and related illnesses, and to encourage appropriate intervention, including medical treatments, social services and
other resources. AFA believes that memory screenings are a significant first step toward early diagnosis.
AFA carries
out this event in collaboration with organizations and healthcare professionals across the U.S.—bringing them together for
care. Participating sites offer free confidential memory screenings, as well as follow-up resources and educational materials
to those concerned about memory loss.
National Memory Screening Day was introduced in November 2003, and is held on
the third Tuesday of November each year. It takes place in November in recognition of National Alzheimer's Disease Awareness
Month.
I have been fretting about getting Alzheimer's Disease ever since I began writing this blog. I worry about my wife Janet,
my brothers and sister, my friends, even my children.
Here's my chance to stop worrying and get a factual "snapshot" of my memory. Go ahead. You can check your memory, too.
Put this
website on your calendar. This fall you will be able to click on the site and be able to locate a memory screening center near you
or near someone you love.
I will help remind you.
(And if my memory fails, then I'm counting on you to remind me!)
