We all know that certain health conditions may play a role in developing Alzheimer’s or other dementia-related illnesses. We know to watch our blood pressure, to exercise regularly, to keep our cholesterol counts as low as possible, to eat heart-healthy meals, to have regular check-ups and watch for diabetes. We all know this! A February 21 . . . → Read More: From ScienceDaily — Look After Your Brain]]>

We all know that certain health conditions may play a role in developing Alzheimer’s or other dementia-related illnesses. We know to watch our blood pressure, to exercise regularly, to keep our cholesterol counts as low as possible, to eat heart-healthy meals, to have regular check-ups and watch for diabetes. We all know this! A February 21 article at Science Daily emphasizes these notions. Here’s an excerpt:

Laura Fratiglioni’s research group at Karolinska Institutet is a leader in identifying the risk factors that lie behind developing dementia and using this knowledge to develop possible preventative strategies. The group’s research has shown that the risk is partly determined by an individual genetic susceptibility, and that active involvement in mental, physical and social activities can delay the onset of dementia by preserving cognitive functions. Further education early in life has a protective effect, and the group’s research has shown that it is never too late to get started.

“The brain, just as other parts of the body, requires stimulation and exercise in order to continue to function. Elderly people with an active life — mentally, physically and socially — run a lower risk of developing dementia, and it doesn’t matter what the particular activities are,” says Professor Laura Fratiglioni.

Laura Fratiglioni’s research has shown that physical factors are also significant. Not only high and low blood pressure, but also diabetes and obesity when middle-aged increase the risk of developing dementia after the age of 70. “What is good for the heart is good for the brain,” she says. (ScienceDaily (Feb. 21, 2011)

What isn’t mentioned, though, is that in spite of all our careful attention, we may still develop brain illness. What may be overlooked is the deep humanity that resides in our brains. For all our best intentions, sometimes people simply get sick. When my husband’s parents were both diagnosed with dementia, it wasn’t because they were not educated, active and healthy individuals. Indeed, it was their active lifestyles and otherwise healthy bodies that allowed them to live well into their very elderly years, dementia or not. When Pop was 76, he could still shoot his age on the golf course. 76 — and on a very tough golf course at that! Most of us couldn’t flail our way below 100 on our best day. Golf takes skill, coordination, imagination and thoughtful planning in order to arrive at the satisfaction of hearing the sound of a golf ball dropping to the bottom of the cup. Mom, on the other hand, was a daily walker. She averaged three to five miles a day, walking into town on hilly terrain that would kill the legs of anyone else. She was also a voracious reader, as well as, the family accountant. She was active, skilled, college educated and imaginative — until dementia.

We need these studies, of course. They help us form a cogent response to calls for disease prevention in everyday ways. Still, Alzheimer’s is not yet a one-size-fits-all disease. It seems to be no respecter of person. It’s still just a mean bully of a disease that turns our loved ones upside-down and shakes them for all they’re worth — and it does so for years.

Nevertheless, thank you to the Karolinska Institutet and the many research units that are fighting so hard to cure Alzheimer’s and other dementias. I look forward to the day that your notable work is no longer needed.

(Karolinska Institutet (2011, February 21). Look after your brain. ScienceDaily. Retrieved February 24, 2011, from http://www.sciencedaily.com­ /releases/2011/02/110220142811.htm)

I don’t want to either add to or take away from this very important story (read the original here) and so I’ll simply insert the text for you with a minor bit of editing here and there for clarity.  Perhaps we are making progress after all:

PARIS – Scientists on Sunday said they had discovered a . . . → Read More: A Bouquet For You]]>

I don’t want to either add to or take away from this very important story (read the original here) and so I’ll simply insert the text for you with a minor bit of editing here and there for clarity.  Perhaps we are making progress after all:

PARIS – Scientists on Sunday said they had discovered a bouquet of proteins that play a critical role in the development of more than 130 brain diseases.

Their study also highlights a surprising link between these disorders, including Alzheimer’s and Parkinson’s — and the evolution of human behaviour, they said.

The human brain is a labyrinth of millions of specialised nerve cells interconnected by billions of electrical and chemical pathways called synapses.

Within these synapses are proteins that combine together, forming a molecular machine known as the post-synaptic density, or PSD, which is believed to disrupt synaptic functioning, causing disease and behavioural change.

Reporting in the journal Nature Neuroscience, Seth Grant of Britain’s Wellcome Trust Sanger Institute led a team that extracted PSDs from synapses of patients undergoing brain surgery.

“We found over 130 brain diseases involve the PSD, far more than expected,” said Grant. “The human PSD is at centre stage of a large range of human diseases affecting millions of people.”

Besides common and debilitating neurodegenerative disorders, these include epilepsies and childhood development diseases such as autism.

The PSDs identified so far come from combinations of 1,461 proteins, each encoded by a separate gene.

“We now have a comprehensive molecular playlist of 1,000 suspects,” noted Jeffrey Neobels, a professor at Baylor College of Medicine in Texas, commenting on the study.

“Every seventh protein in this line-up is involved in a known clinical disorder, and over half of them are repeat offenders.”

The findings open several news paths toward tackling these illnesses, including better diagnosis, the authors said.

To help accelerate this goal, the researchers have released all their data into the public domain, and created the first-ever “molecular roadmap” for human synapses showing how proteins and diseases interconnect.

“We can also see ways to develop new genetic diagnostic tests and help doctors classify the brain diseases,” Grant said.

Unexpectedly, the study also revealed the proteins in PSDs have deep evolutionary roots and play an indirect role in cognitive behaviours such as learning and memory, as well as emotion and mood.

Compared with other gene-encoded proteins, the PSD proteins evolved much more slowly.

“The conservation of the structure of these proteins suggests that the behaviours governed by the PSD and the diseases associated with them have not changed much over many millions of years,” Grant said.

It also shows that the synapses in rodents are more similar to humans than previously thought, suggesting that mice and rats are good models for examining human brain disease, he said.

Brain disease and disorders are the leading cause of medical disability in the developed world, according to the UN’s World Health Organization.

It’s usually just a tiny conversation, only a few words long.  But every day, millions of men and women stand in their living rooms, their hands clutched to their chests, worry spilling from their eyes.  I can’t remember, they say.  Three small words.  I can’t remember.  Usually it has to do with yet . . . → Read More: Forgetful]]>

It’s usually just a tiny conversation, only a few words long.  But every day, millions of men and women stand in their living rooms, their hands clutched to their chests, worry spilling from their eyes.  I can’t remember, they say.  Three small words.  I can’t remember.  Usually it has to do with yet one more misplaced item or yet another forgotten event.  But even while those small words thud clumsily about the room, there’s not a “senior moment” that isn’t accompanied by a deeper, darker and much more elegantly frightening thought:

What if it’s Alzheimer’s?

We all begin our lives as soft-skinned, fragile little tendrils, reaching upward, asking to be filled with colors and shapes, words and lullabies.  We grow.  We learn and laugh and discover love and triumph and even certain disappointment amid our days.  We marry and continue on and on.  Somewhere along the way, we harden into spacious teacups filled with wisdom and comfort to pour out for those we love.

But some of us crack.

Some break apart.  Everything  stored to this point begins to leak and fall and clatter to the floor.  Things get forgotten.  Things are repeated.  The internal directional compass that had earlier been so easy and effortless to follow becomes impossible.  Everyone stands helplessly aside while words whiz by in confounding, befuddling speed.  For those who become eventually and irretrievably forgetful, life is a continuous one-way turn until, in the end, there is simply a circle back to diapers and liquids and … wordlessness.

Currently more than 5 million Americans have Alzheimer’s disease, and 78 million baby boomers are at risk – unless we find a way to change the course of this disease.

Alzheimer’s is a degenerative brain disease that’s not happy with simply killing its victims in a timely or reasonable manner.  No.  It first takes its victim’s essence … slowly, over several agonizing years, until there is seemingly nothing left of the original person.  There is no cure.  Although there is promise with gene research and earlier diagnostic techniques, current therapies only offer a short-term delay of the inevitable outward display of symptoms.

That’s why I’m going to participate in the Alzheimer’s Association’s Memory Walk.

On November 13, 2010, I’ll join thousands of others in Phoenix walking to raise awareness and funds for Alzheimer care, support and research.  I’m doing this for the memory of Dan’s parents.  My legs will be filled with the thought of millions of Americans who are slowly dying of this memory-stealing disease.  For three short miles, I’ll carry the hope that a cure will be found before we are hopelessly overwhelmed by an aging population of baby boomers ripe for the pickings by this dreaded disease.

If you have an opportunity to either join me in Phoenix or find a Memory Walk in your particular area, I’m excited that you would do that.  I’m encouraged that we would all think about what it means to retain our memories and our personalities as we grow older.  If nothing more, let’s think of being those beautiful teacups, pouring out the wisdom of our ages and love for our families, and do everything we can to make that our future.  If you can, give.  If you can’t, maybe light a candle or say a tiny prayer for people who are sick with a very frightening disease. Everything — anything — helps.

As we do with cancer and heart disease, let’s elevate Alzheimer’s disease to the same level of immediacy by giving what we can and doing what we should.  Let’s fund research that will find a cure so that — somewhere down the road — should you find yourself or someone you dearly love, hands clutched to the chest, admitting, I can’t remember, it will no longer foretell a slow and agonizing destruction.  It will just be a normal “senior moment” to shake off and chuckle over.

Referring to Alzheimer’s and other brain diseases as, “the new moon,” best-selling writer, award-winning journalist, activist and California’s First Lady, Maria Shriver, is now a trailblazer for Alzheimer’s advocacy.  Saying, “If President Kennedy could launch a space program to explore space and land a man on the moon, we should be launching a program, to launch . . . → Read More: The New Moon]]>

Referring to Alzheimer’s and other brain diseases as, “the new moon,” best-selling writer, award-winning journalist, activist and California’s First Lady, Maria Shriver, is now a trailblazer for Alzheimer’s advocacy.  Saying, “If President Kennedy could launch a space program to explore space and land a man on the moon, we should be launching a program, to launch the clues, the answers, to the human brain,” Shrive approaches the subject of Alzheimer’s as one of America’s greatest challenges.

Shriver first approached her capacity as a prominent First Lady, by transforming the position into a platform capable of making a powerful difference, most particularly in the lives of women.  After her father was diagnosed with Alzheimer’s disease seven years ago, Shriver wrote the acclaimed  children’s book, “What’s Happening to Grandpa?” as a way to help her process her feelings and to help children understand the puzzling aspects of Alzheimer’s.

After the success of that book, Shriver produced a four-part HBO documentary called “The Alzheimer’s Project,” thus calling the disease out from what she termed the “dark room and into the living room.”  In 2009, she testified before the U.S. Senate Special Committee on Aging and offered advice to families and caregivers affected by Alzheimer’s.

In 2003, Shriver created a number of programs in California under the name of WE and held its first Conference (the California Governor & First Lady’s Conference on Women), now one of the world’s most influential women’s meetings, with more than 30,000 attendees and more than 100 world opinion leaders.

This year’s Conference is scheduled in Long Beach, California on October 24 to 26, and will feature an impressive and eclectic slate of journalists, entertainers and leaders.

The focus of this year’s Conference on Alzheimer’s reflects her belief that “this disease needs more money, more conversation, more adjustments by all of our leading instutions than perhaps any other in American life.”  The disease disproportionately affects women “not just as the person living with the disease, but women are the primary caretakers of the elder generation.”  As both caregivers and patients, she says, “we need help!  We need help from our businesses where we work, with flex hours.  We need help from our government, which is the largest employer in the nation.  We need to have a conversation and ask, ‘where are our priorities?’”

For more information on the March on Alzheimer’s and to register online, click here.

Scientists have recently found that people with rheumatoid arthritis tend to have a lower incidence of Alzheimer’s disease than the general population.  Again, it seems that the correlation to the body’s response to certain diseases appears to protect against other ailments.

Researchers at the University of South Florida believe that the connection between . . . → Read More: Rheumatoid Arthritis and Alzheimer’s]]>

Scientists have recently found that people with rheumatoid arthritis tend to have a lower incidence of Alzheimer’s disease than the general population.  Again, it seems that the correlation to the body’s response to certain diseases appears to protect against other ailments.

Researchers at the University of South Florida believe that the connection between these two conditions may lead to a treatment for Alzheimer’s.  They found that a protein released in rheumatoid arthritis helped mice recover from cognitive problems of Alzheimer’s.

Their study, published in the Journal of Alzheimer’s Research, looked at the protein GM-CSF, which naturally occurs in the human body in response to arthritis.

A synthetic version of this protein is used in the drug Leukine (sargramostim), given to cancer patients to help them recover from chemotherapy. The Food and Drug Administration approved the drug for use in cancer patients in 1991; Leukine is not, however, approved for use in Alzheimer’s patients.

The protein stimulates the production of white blood cells. Macrophages, particular kinds of white blood cells, can enter the brain and get rid of amyloid deposits, which are signatures of Alzheimer’s, said study author Huntington Potter, the Eric Pfeiffer Chair for Alzheimer’s Research at the University of South Florida.

Research suggests that Alzheimer’s disease in mice is similar to Alzheimer’s disease in humans.  But, as with any mouse study, there is uncertainty; there have been drugs that worked just fine in mice, but failed in humans or caused serious side effects side effects in humans.

Potter and colleagues are “cautiously optimistic” about the results.  They plan to conduct clinical trials in humans, but have not yet received approval from the appropriate regulatory groups.

Alzheimer’s Fluid markers from the spine may reveal early signs of Alzheimer’s Disease in adults before typical symptoms appear, according to new research.

The spinal tap test was found to be ninety percent accurate in identifying the disease in Alzheimer’s patients.

“This is what everyone is looking for, the bull’s eye of perfect predictive accuracy,” . . . → Read More: Spinal Fluid Test Could Predict Alzheimer’s Disease]]>

Alzheimer’s Fluid markers from the spine may reveal early signs of Alzheimer’s Disease in adults before typical symptoms appear, according to new research.

The spinal tap test was found to be ninety percent accurate in identifying the disease in Alzheimer’s patients.

“This is what everyone is looking for, the bull’s eye of perfect predictive accuracy,” said Dr. Steven DeKosky, dean of the University of Virginia’s medical school, who is not connected to the new research.

The study, said Dr. John Morris, a professor of neurology at Washington University, “establishes that there is a signature of Alzheimer’s and that it means something. It is very powerful.

Early-stage Alzheimer’s patients have a new incentive to get moving. A University of Kansas study found that patients who were fit had four times less brain shrinkage (meaning cell death) than those who were out of shape. The benefits of exercise, including changes in growth factors and increased blood vessels and blood . . . → Read More: Fit Body, Fit Brain]]>

Early-stage Alzheimer’s patients have a new incentive to get moving. A University of Kansas study found that patients who were fit had four times less brain shrinkage (meaning cell death) than those who were out of shape. The benefits of exercise, including changes in growth factors and increased blood vessels and blood flow, may prevent brain cells from dying. Researchers suggest first-time exercisers begin with a 15- to 30-minute walk three times a week.

For sedentary desk jockeys (I’m suddenly thinking of writers like myself), this can be important news.  For those of us who spend much of our days tapping away at keyboards, it now appears that just stretching our brains with creative thought isn’t enough.  This Study tells us that moving our bodies is as important as penciling in that daily crossword puzzle or Sudoku, using our writer’s imagination or spending hours performing deep research.

Apparently, we are not meant to be still photography subjects.  We are better suited to be rolling stones, moving through our days kinetically as well as statically.  This is difficult news for the likes of someone like me.  A cup of steaming coffee next to my computer and a comfy-soft chair gliding me through the day is what suits me.  The only tug and pull of activity is that of locating words in the right order.  Instinctively, I know that the movement of body serves as a guide for the mind.  In practice, however, I’m the Master of Excuse when it comes to exercise.  Maybe it’s the word, exercise that pulls up visions of discomfort and hard work.

I’d like to try, though.  I’d like my body to find its layers of intelligence the same as I’m able to locate in my mind.  It’s like taking a warm and inviting house and adding some “curb appeal” in order to have a complete package.

As the University of Kansas Study suggests, walking is one way to begin this outer/inner transformation.  On those days when the weather is unfavorable for a nice outdoor walk, I have a walking DVD to plug in.  I can also turn on some lively music and DANCE!

The point is to move the body in concert with the mind, to create a symphony of health, to invigorate the brain by inviting in some exercise.  Apparently, when it comes to Alzheimer’s disease, the whole IS greater than the sum of its parts.

When I started writing my book entitled, All the Dancing Birds, an illogical and imaginative leap into the mind of Alzheimer’s, I started with nothing more than an interesting idea and a brave swallow.  Within the first few pages into my story, I realized it would take more than just the observation . . . → Read More: Alzheimer’s From the Inside-Out]]>

When I started writing my book entitled, All the Dancing Birds, an illogical and imaginative leap into the mind of Alzheimer’s, I started with nothing more than an interesting idea and a brave swallow.  Within the first few pages into my story, I realized it would take more than just the observation of and love for family members and a friend with whom I had the privilege of interacting during the course of their disease in order to write a compelling story that would have meaning for others.

I needed to study.  To know.  To recall more than just being a frightened and ill-equipped family member or friend.  I needed to find that jumping-off point where I could leap from my own ingrained sense of what is normal and right.

It helped that I had survived a brain tumor.  That small fact allowed for one tiny emotion to surround every family conversation, every interaction, every Oh-Dear, does-he-really-think-there-is-fire-coming-from-my-purse? moment of surprise.  There was always one thing that held us each together, that stitched the logical to the illogical in all those crazy-quilt conversations of reality-gone-different.  I too had experienced a form of brain disease and that one fact made us lovingly similar.

So there it was!

The only thing that helped during every nonsensical, circuitous down-the-rabbit-hole conversation was reminding myself that my Loved One suffered from a BRAIN DISEASE.  Our only difference was that my disease was a golf ball-sized mass of tissue that had been REMOVED.  Their disease couldn’t be plucked out and dropped into a stainless steel pan to be sent off to pathology.  While I had been saved, my dear ones had no recourse but to ride out that A-Ticket of Alzheimer’s Disease to its final destination.

Thus, I found our connection through the non-judgmental aspect of empathy.  Grand, whopping dollops of never-ending, fly-by-the-seat-of-my-pants empathy.   It’s from that perspective that I wrote All the Dancing Birds –from a heart of Empathy with a capital E.

While my dearhearts were alive, without that me-too sense of connection, I’m sure our interactions would have been different.  We would have had conversations where I’d have tried to insert and assert my sense of “reality” when all that was necessary was a simple act of what my mother called, “putting on my listening ears.”  Without judging what was right or wrong, real or unreal, I was able to be an (albeit reluctant) observer.  I tried very hard to be a person who didn’t remind my loved one that I’d heard that story already ten times in the last hour.  I tried especially hard to be that person who took a diatribe of nonsense and, instead of letting it make me cry, allow the words to be assigned to whatever broken part of the brain that caused such an unexpected outburst.  Meaning and importance was turned upside down and inside-out, shaken out and then swept up like so much spilled salt.

When it was all over, I empathized my way into writing a story from their perspective.  From their heart.  From THEIR mind.

Each of my loved ones, while in the vortex of their disease, had exhibited different behaviors, different mannerisms, different ways of coping.  Whether they admitted it publicly or declined to acknowledge their illness, each knew they were very ill.  Each struggled and hid and flailed through frightening days and even more terrifying nights.  It was this amalgamation of their common set of behaviors from which I crafted my story.

All the Dancing Birds is now nearly done, the words are almost all in place, the prescribed number of manuscript pages is almost there.  I’m only days from completing an illogical, upside-down, inside-out work of art in honor of my dear ones.

Please wish me luck.  I’m so in love with my family and friends — I think they would like my story.

I watch my sister slowly inch her way down the stairs from her second-story apartment.  She moves one step at a time, sideways like a sea crab, holding tightly to the railing so the ocean tide of frailty doesn’t wash over her.  I offer to help, to hold her arm, to . . . → Read More: A Bell and the Beauty of a Sister]]>

I watch my sister slowly inch her way down the stairs from her second-story apartment.  She moves one step at a time, sideways like a sea crab, holding tightly to the railing so the ocean tide of frailty doesn’t wash over her.  I offer to help, to hold her arm, to inch along with her.  To be sister crabs.  She says, No, it will only bring us both down.  We argue a moment, but she is my big sister.  She wins, which means I go down ahead, then turn to helplessly watch her frightening descent.

She is fading in the light and I squint to see her.

She shouldn’t be on stairs.  There are the knees that lock and buckle every now and then.  There are the swollen fingers trying to circle the railing.  There are the feet that reach out to find the edge, only to hesitate before stepping out and down, one riser at a time.

Still, she looks beautiful in this sideways slow-motion view.  Terrifyingly beautiful.  She’s wearing pink today.  With a black and pink flowered overshirt.  Black flats.   She has carefully styled her hair into a thick topknot.  I can tell it’s growing long again.  When it’s long enough, she’ll have it cut off to donate to Locks of Love.

When she is at the bottom step, I realize I’ve not been breathing.  It’s the middle of June in Phoenix.  It is hot.  My sister blows on her palms, her fingers, hoping to prevent the blisters certain to come after clutching a burning metal railing.  I help her into the car and help her pull the seat belt across her shoulders.  I help her click the belt in its clasp.  I help her adjust the air conditioning vent.  I help.  I help.

I want to kiss her burning fingers to make them better, but instead, I concentrate on driving to our first destination.  It’s errands day for my sister and I’m what she calls her “first line of defense.”  She calls me that because I defend her from the daily onslaught of overwhelming circumstances that befall those who have mental illness.  I tell her I should sew a pink Defender’s costume and ask if I should add a tool belt.  She laughs and laughs.

Her bones are substantial, but still she is frail and she is fading.  A pink costume and a tool belt won’t help except to maybe cause a laugh to escape from her mouth.

We reach our first destination and I help my sister from the car and into the bank.  She insists I stay back.  I understand.  She’s lost her house, her car, most of her things, her dignity and her brilliant mind.  Tiny moments of privacy, here and there, are all that are left for her.  After the bank, we go to the grocery store.  She slides into one of the store’s motorized carts and says to me, You wait outside on the bench.  I understand this too.  She doesn’t want me to see the way her hand trembles as it reaches for a carton of milk, a can of peaches, her wallet with its few dollars tucked inside.

When the shopping is done, we drive back to her apartment and I carry her few bags of groceries upstairs.  I help her put away the heavy items.  I help.  I help.  Then we go back down the stairs, slow again like ghosts trailing along the day’s shimmering heat.   We drive to my sister’s favorite restaurant where I help her navigate to her favorite booth.  We order.  We smile and I make conversation.  Some days, she likes to be quiet.  This seems to be a quiet day.  When our food arrives, she eats in silence.  With a napkin tucked into the collar of her blouse, her hair tucked tightly into a knot, her fingers still red from holding the metal railing on her stairs.

I look through the steam rising from my plate and, once again, watch my sister fade into the day.

Please visit the National Mental Health Association and while you’re looking around, read the Bell Story and then, maybe consider joining the Mental Health America Support Community.  Thank you so much.

It’s hard to be a new caregiver … especially to one who’s not ready for care to be given.

What does one do when it’s time to take over?  I’d like to hear your thoughts.  Honestly … I NEED to hear your thoughts.