inside alzheimer’s…o’brien #2

This is the second in NPR’s series “Inside Alzheimer’s,” about the experience of living with Alzheimer’s. In part one, Greg O’Brien talked about learning that he had the disease.

A diagnosis of Alzheimer’s disease…doesn’t mean your life is instantly over. There is this stereotype that…you’re in a nursing home and you’re getting ready to die…That’s not true.

In fact, in the five years since he was diagnosed with early-onset Alzheimer’s, O’Brien has taken copious notes about his condition and published a memoir.

There are times when I, I cry privately. It’s an emotional thing, the tears of a little boy because I fear I’m alone and the innings are starting to fade.

Alzheimer’s…is like ‘a death in slow motion.’

It’s like a plug in a loose socket… Think of yourself, wherever you are in the country, and you’re sitting down and you want to read a good book, and you’re in a nice sofa chair next to a lamp at night. And the lamp starts to blink. You push the plug in and it blinks again and you push the plug in. …Well, pretty soon you can’t put the plug back in again because it’s so loose, it won’t stay there. And the lights go out forever.

Interview Highlights

On putting his assets in his wife’s name…
The doctors told me that I needed to turn everything that I had over to my wife. I’m not allowed to own anything anymore. That was a difficult thing for me because our house on Cape Cod, which I had built, was exactly the kind of home that I wanted to live in and raise my children in. And now I felt that I was a renter.

And that was the beginning of the stripping away of my identity. And I knew no one got that but me. You know, God bless all the doctors and many of the caregivers in the world, but it’s really the people who are fighting through early Alzheimer’s who…who get it.

And…now I forgot the rest of your question. Can you repeat it?

On waking up confused each morning
I don’t have a self-identity; I have to find it. I’m an old-school guy, and I think of a file cabinet and think of the who, where, what, when, why and how of your life, arranged in files in this filing cabinet. Then at night, someone comes in and they take all the files out and they throw them all over the floor.

And then you wake up in the morning and say, “Oh my god, I have to put these files back before I realize my identity.”

LISTEN! IT’S 24/7.

What is there to look forward to anymore? What does the future look like to someone with Alzheimer’s disease?

You want an honest answer?

I DON’T KNOW HOW LONG I CAN KEEP THIS FIGHT UP.

On labeling everyday objects
Right now I have to label toothpaste because I’ll grab for soap or lotion and brush my teeth. I also label mouthwash, because there was a time when I grabbed the rubbing alcohol. Knowing, looking at it…it said rubbing alcohol, Greg! But I said ‘No,’ and I took a swig. Let me tell you, rubbing alcohol doesn’t have a thin, minty taste.

On short-term memory loss
Sixty percent now of my short term memory can be gone in 30 seconds. More and more, I don’t recognize people. And now people understand that and, God bless them, they come up and introduce themselves to me. These are people I’ve known since childhood.

In addition to my short-term memory loss, there are times when I’ve hurled a phone across the room, a perfect strike to the sink, because in the moment I didn’t know how to dial. I’ll smash my lawnmower against an oak tree in the backyard in summertime because I don’t remember how it works.

I cry privately. It’s an emotional thing, the tears of a little boy, because I fear I’m alone and the innings are starting to fade. You know, a fish rots from the head down.

…like being buried alive.

………hugmamma.

 

 

 

 

Alzheimer‘s robbed my mom of her memories…and her life. This artist’s visual depiction of the disease is uniquely poignant.

………hugmamma.

artful intuition

Our memory is like a shop in the window  of which is exposed now one,  now another photograph of the same person.  And as a rule the most recent exhibit remains for some time the only one to be seen.  ~Marcel Proust

Vanishing Point, completed as a limited handmade edition in 2009, explores the mutable, and sometimes unreliable, nature of the human memory.  The images are drawn from several decades of family photos of my maternal grandmother, who suffered from Alzheimer’s in the last years of her life.  The tunnel book format was an ideal one to express the passage of time.  Photographic images are the remembered experiences filed away by the mind.  Insect channelling, like that seen rare books and manuscripts, represents the disease eating away at one’s recollections of times past.  These lacunae grow larger and larger as one moves forward in time.  And contrary to Proust’s description, the most recent experience, and point at which the…

View original post 84 more words

proactive…against alzheimer’s

My friend Sylvia sent me a nice email which, among other things, expressed her concern that perhaps I dwell on the possibility of succumbing to Alzheimer’s more than I should. I’m certain the disease is not in her genes, for I’ve never heard her speak of either parent or any family member having died with it. Sylvia’s a decade older than me, and shows no signs of memory loss. Having done extensive reading about the disease, I know that she’s already got several factors in her favor for NOT developing Alzheimer’s.

Sylvia is a voracious knitter. Challenging herself with difficult patterns probably keeps her mind agile. She is a meticulous housekeeper and gardener. You could dine off her kitchen and dining room floors, and spread out luxuriously on her manicured lawn, while your eyes feast on the abundant clematis flowers that climb the nearby fence. The exercise involved is also good for the brain, not to mention the body. Finally, Sylvia relishes socializing. She and Jim traipse hither and yon to listen to the big band sounds of “Peach Tangerine.” She has belonged to the “Happy Hooker’s” knitting group for 20+ years, inviting the ladies to her home for an annual Christmas luncheon. And she goes above and beyond to help those in need, from family members to elderly neighbors in her retirement community. Sylvia’s got socializing down to a science which is great, because it’s a key ingredient in the fight against Alzheimer’s.

Sylvia has taught me invaluable lessons on growing older gracefully…and keeping my mind healthy and happy. From what they’ve written, others have also given me useful information so that I can take a proactive role in slowing the onset of Alzheimer’s or perhaps preventing it altogether. I regularly share this information in the hopes that it might encourage others to take action as well. I don’t do it as a plea for sympathy, or to sound my own horn. I truly feel this disease, like others, can and should be addressed as early as possible. If there’s any cause for which I am fully committed, rather than “burying my head in the sand,” the delay or prevention of Alzheimer’s is the mother lode of all causes for me. I take a stand not only on my own behalf, but also on behalf of those I love, and who love me.

Cover of

Cover of Preventing Alzheimer's

Leeza Gibbons, one-time TV personality writes in the “Foreword” for Preventing Alzheimer’s – Ways to Help Prevent, Delay, Detect, and Even Halt Alzheimer’s Disease and Other Forms of Memory Loss by William Rodman Shankle, M.S., M.D. and Daniel G. Amen, M.D.:

If you’ve picked up this book, you’re probably scared. Or if not afraid, at least interested in what causes Alzheimer’s disease and learning whether you are at risk.

The reality is that we’re all at risk of having this “terrorist-like thief” randomly break into our brains and begin to rewrite our life stories. As Baby Boomers beginning to face our mortality, Alzheimer’s is the unwelcome stranger that reminds us of our vulnerability.

The good news is that we don’t have to be defenseless.

My grandmother lost her life because of Alzheimer’s disease. We lose a little more of my mom everyday. Before Mom was fully trapped behind the fog, she asked me to promise that I would tell her story and use it to educate and inspire. I am, but doing so often brings more questions than answers. She looked into the face of her mother at my Granny’s funeral knowing what her fate would be. I looked at Mom and wondered…What about my children, and what about me? Am I next in line to have my memories stolen?

When my three children ask me if I will get “it” I tell them–truthfully–that I don’t know.

Thanks to Drs. William Rodman Shankle and Daniel Amen, what I do know is that perhaps I can effectively manage my risk of getting the disease, and you can, too. Whether or not you have a history of Alzheimer’s or dementia in your family, your goal is to keep your brain strong and healthy. …

We all know that the “age wave” is about to crash in our culture and yet we are not at all ready. Even in the wake of President Ronald Reagan‘s death, there is still so much shame and stigma surrounding memory disorders that many families try to compensate and deny until they are bankrupt–financially, spiritually, and emotionally. Alzheimer’s is a disease that depletes and depletes, and it is never satisfied with the diagnosed individual…it wants the entire family.

It’s for this reason I created the Leeza Gibbons Memory Foundation. Our family was numb and paralyzed with fear when Mom was diagnosed. It was almost impossible to find the help and support we needed. Answers were scarce. …

Leeza's Place

At Leeza’s Place, our mantra is early diagnosis. We believe in memory screenings to get a baseline reading, against which any decline can be measured. We believe in educating our guests about the latest in alternative treatments to complement traditional approaches. We believe in being proactive against this frightening force. We believe in support for both the recently diagnosed and those who care for them.

That’s why I am so impressed with Drs. Shankle and Amen and their work. They are well-respected scientists whose work is world-renowned, but I also know them as kind, compassionate men who not only focus on how to tackle this disease, but on connecting with families who arrive in their offices with their breath knocked out of them, looking for a miracle. These two doctors will never try to talk anyone out of expecting a good outcome…they have seen it happen too many times. They have been the guiding forces toward success stories that may offer real hope against a dark landscape of despair. …

You are perhaps doing nothing short of changing the course of your future, and possibly someone else’s, by reading this book. Can you think of anything more powerful or important? It’s a popular notion that we must gracefully surrender the things of youth. Yes, we will lose our firm muscles and unlined skin, but memories should be ours for keeps. They are what resonate at the end of a life, sweetened over time.

We must do what we can to bolt the door to our minds so that our treasured recollections of those we love, where we went, and what we felt will be kept forever as a sort of “soul print” of our time here on earth. This book suggests options that might have the potential to lock out Alzheimer’s disease in order to do just that.

This image shows a PiB-PET scan of a patient w...

Image via Wikipedia

Under the heading “What the Brain Needs to Stay Healthy,” Drs. Shankle and Amen write:

Fuel
Just like any other living thing, a brain needs fuel to grow, function, and repair itself. Glucose and oxygen run the engine powered by your brain cells. Glucose is a simple six-carbon sugar. Unlike other cells in your body, your brain cells only know how to use glucose. Anything that impairs glucose delivery to brain cells is life-threatening. Oxygen is required to produce energy; without it your mitochondria will not produce enough energy to keep your brain alive. Because blood delivers glucose and oxygen to your brain, nothing must get in the way of blood flow if the brain is to stay healthy.

Stimulation
Although largely genetically programmed to turn on its functions at the right developmental age, the human brain also depends on proper stimulation to grow and develop throughout childhood and to maintain its functioning into old age. When you stimulate neurons in the right way, you make them more efficient; they function better, and you are more likely to have an active, learning brain throughout your life. …

The best sources of stimulation for the brain are physical exercise, mental exercise, and social bonding.

Physical Exercise
Physical exercise is important for brain health. Moderate exercise improves the heart’s ability to pump blood throughout the body and helps maintain healthy blood flow to the brain, which increases oxygen and glucose delivery. Exercise also reduces damage to neurons from toxic substances from the environment, and it enhances insulin’s ability to prevent high blood sugar levels, thereby reducing the risk of diabetes. Physical exercise also helps protect the short-term memory structures in the temporal lobes (hippocampus and entorhinal cortex) from high-stress conditions, which produce excessive amounts of the hormone cortisol (20). …The Honolulu Study of Aging found that untreated high blood pressure during midlife (40 to 60 years old) greatly increases the risk for dementia. …This study emphasizes the importance of regular exercise and proper treatment of any medical conditions you may have. …

Mental Exercise
Physical exercise has a global effect on the brain, but mental exercise is equally important. By mental exercise, we mean acquiring new knowledge. It is possible to use your brain without learning anything new, which in the long run is not terribly helpful. For instance, Dr. Joe L. reads mammograms all day long–reads thousands of them a year–and although he is working his brain every day, he is not actually taking in new information. Whenever the brain does something over and over, it learns how to do that particular thing using less and less energy. New learning–such as learning a new medical technique, a new hobby, or new game–helps establish new connections, thus maintaining and improving the function of other less-often-used brain areas. …

Social Interaction
One common source of brain stimulation that is often overlooked is interacting with other people. Social interaction is the fuel the brain needs to develop the ability to negotiate, cooperate, and compromise with others, to know right from wrong, and to know when to respond and when to keep silent. These highly complex human abilities are largely controlled by the tips of the frontal lobes. They start to develop before two years old, such as when the infant starts saying no to the parents. These abilities continue to develop at least until 50 years old, according to studies of brain myelination, and perhaps longer.

Child neglect has been associated with many brain-based developmental difficulties such as personality and learning and behavioral problems. Likewise, adults deprived of the company of others experience a clear negative effect on cognitive abilities, memory, and social skills. In studies on social connectedness in the elderly, it has been shown that people who spend time with others on a regular basis are cognitively sharper. In addition, their emotions are more even. Psychiatrists have seen time and again that people who are isolated commit suicide dramatically more often than those who are active in society. Simple social interaction stimulates particular neuronal circuits. For instance, there is a self-awareness circuit at the very tip of the frontal lobe. If its capacity is diminished, the person can no longer judge her own abilities. Self-awareness is maintained, literally, by being aware of oneself, and that is aided significantly by feedback from other people. If the circuits in the crucial areas of the frontal lobe aren’t being used, they atrophy, and the person’s social skills suffer.

Page 71 of the book carries “The Shankle-Amen Early Dementia Detection Questionnaire.” Listed are 21 short questions to which the answers are either “yes” or “no.” In parentheses are numerical scores. Upon completion, one is asked to total the scores for the “yes” answers.

Interpretation
If the score is 0, 1, or 2, then you have low risk factors for developing ADRD.
If the score is 3, 4, 5 or 6, then you should annually screen (see Appendix A) after age 50.
If the score is greater than 6, then you should annually screen (see appendix A) after age 40.

Following are the questions for which I answered “yes.”

1._(3.5) One family member with Alzheimer’s disease or other cause of dementia

10._(2.1) High cholesterol (hyperlipidemia)

Mrs. Laura Bush, First Lady of the United Stat...

Image via Wikipedia

As you can see my score is 5.6 indicating that I should test for memory loss, which I will be doing. Coincidentally as I write this post, there’s a Larry King special on TV, “Unthinkable – Alzheimer’s Epidemic.” Among other guests speaking of their experiences with family members who had Alzheimer’s are Leeza Gibbons, Laura Bush, Angie Dickinson, Ron Reagan, and Maria Shriver. Contributing to the piece are the Mayo Clinic, the Cleveland Clinic, as well as doctors, scientists, and other experts in the field. Larry King underwent testing, including an MRI, to see if symptoms of dementia and Alzheimer’s could be detected. He came away with a clean bill of health as far as they were concerned.

β-amyloid fibrils.

Image via Wikipedia

The message of my post, and Larry King’s TV special, is to recognize and accept the potential for Alzheimer’s. But more importantly, it’s that we should be aggressively proactive in remaining out of its debilitating grasp for as long as we are able. For once its tentacles take hold, there’s no escape…ever.

preferring to be the aggressor…and not the victim…hugmamma.  

“getting over getting old,” laughing helps…a lot!

You want more laughs? You’ve got it! The usual instigator being my Brit friend with the wicked sense of humor…Sylvia.  🙂

 
 
 
Questions and Answers from AARP Forum
Q: Where can men over the age 
of 60 find younger, sexy 
women who are interested 
in them?
A: Try a bookstore, under fiction.
Q: What can a man do while his 
wife is going through 
menopause?
A: Keep busy. If you’re handy with 
tools, you can finish the basement. 
When you’re done you’ll have a 
place to live.
Q: Someone has told me that 
menopause is mentioned in 
the bible. Is
 that true? 
Where can
 it be  found?
A: Yes. Matthew 14:92: 
“And Mary rode Joseph’s ass 
all the way to  Egypt …”
Q: How can you increase the 
heart rate of your 60-plus 
year old husband?
A: Tell him you’re pregnant.
Q: How can you avoid that 
terrible curse of the elderly 
wrinkles?
A: Take off your glasses.
Q: Seriously! What can I do for these Crow’s feet and all those wrinkles on my face?
A: Go braless. It will usually pull them out.
Q: Why should 60-plus year old people use valet parking?
A: Valets don’t forget where they park your car.
Q: Is it common for 60-plus year olds to have problems with  short term memory storage?
A: Storing memory is not a problem– Retrieving it is the problem.
Q: As people age, do they sleep more soundly?
A: Yes, but usually in the afternoon.
Q: Where should 60-plus year olds look for eye glasses?
A: On their foreheads.
Q: What is the most common remark made by 60-plus year olds when they enter  antique stores?
A: “Gosh, I remember these!”
SMILE, You’ve still got your sense of humor, RIGHT

 

 

 

 

 

  

 

     

    

just in the nick of time to help me reach my goal…hugmamma. (gotta love my friend Sylvia!)