a parent’s worst…nightmare

…or at least one of them…a child with a debilitating disease like…cystic fibrosis.

I’ve been trying to catch up with visiting other blog sites. After all, many so generously take time to visit hugmamma’s mind, body, and soul. You know what they say…”what goes around, comes around.” And I sure as heck like it when folks come around.

Once-in-a-while one post catches my attention, forcing me to pause and take a deep breath. Victoria’s “A summer of CF” did just that. 

How much is a parent able to give as a caretaker, especially for one’s own child, without succumbing to depression? I don’t know, not having been there myself. I can only think to offer up prayers for someone in Victoria’s position, and ask that you do the same…after you read what she shares at http://thevoicefromthebackseat.wordpress.com/2013/08/26/%f0%9f%94a-summer-of-cf/ 

…i’m sure you’ll be moved to say a prayer for this family…and be very grateful for the blessings in your own life…

Victoria, Australia - Great Ocean Road

………hugmamma.

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in loving memory…of lives lived…not lost…

 

Life…and death…have a way of slowing down the rat race.

When we seem certain that the nuts and bolts in our daily lives are running smoothly, the machinery in our little world…our microcosm…chugging along quite nicely, producing the results we’d hoped for, striven for…fate intervenes, upending our…house of cards.

I spent a few moments this morning perusing the most recent posts written by friend and fellow blogger, Christine at http://randomthoughtsfrommidlife.wordpress.com

Français : couverture du livre La maladie d'Al...

Français : couverture du livre La maladie d’Alzheimer – Accompagnez votre proche au quotidien (Photo credit: Wikipedia)

My original connection with her was that her dad was suffering from Alzheimer’s. You see…my mom also suffered its debilitating effects before finally succumbing a number of years ago.

As a result, I was on the path to doing what I could to deter or slow the progression of that dreadful disease…in myself.

Sadly, Christine recently lost…both parents.

Her mother was unexpectedly diagnosed with cancer, not too long before she died. Christine’s dad followed soon after.

A few years ago, before I began following Christine’s blog, she suffered the loss of a beloved sister who had been retarded.

I’ve admired Christine’s strength throughout the turmoil she endured caring for her parents. And the love she shared with them…and the sister who had gone before.

Christine’s compelling story was like…a dip in the icy cold glacial waters off the coast of Alaska.

When we think life is so unfair…it seems best to remember the advantages we do enjoy.

I’ve been given a chance to live…

…to love…and be loved…

…to explore my talents…and forgive my weaknesses…

…to know others…and have them know me…

…to see with my eyes…the beauty of all I see…

…to hear with my ears…the sounds of life beckoning me forward…

…to sample with my own taste buds…all the gastronomical delights that others create…and the humble offerings that emanate from my own two hands…

…to walk and jump and climb and crawl and wriggle and stretch.

Above all…

I can think and remember and express and give voice and cry and laugh and complain and argue and be thankful…

…and I can pray…

…for myself and for others…

LIFE AFFORDS ME ALL THIS…

AND SO MUCH MORE.

Death cannot take away all the life that I have lived thus far.

Only I can do that…if I fail to crowd every nook and cranny of my life with the sights, sounds, smells…and all the amazing moments that present themselves.

Christine’s story reminded me to…enjoy the ride of a lifetime…

…every single moment…of every single day!!! croppedphoto

details…little known facts

Secret Service agents in response at the assas...

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In summing up what I’ve learned about President Ronald Reagan and First Lady Nancy Reagan from reading I Love You, Ronnie, a couple of details came to light which I’d not known before. And according to Mrs. Reagan, only those close to what occurred at the time, knew. The first dealt with the assassination attempt on the President’s life 3 months after he took office. The second was an incident that probably caused the premature onset of his Alzheimer’s. Only a handful, it seems, were privvy to both occurrences.

Waiting for news, Nancy Reagan sat with Sarah Brady, whose husband Jim had also been shot in the attempt on the President’s life.

As we waited, I looked out the window and saw how, in the buildings all around the hospital, people had thrown sheets out the window saying things like GET WELL, MR. PRESIDENT and WE LOVE YOU, MR. PRESIDENT. Every now and then, a nurse would come and report to me on Ronnie’s progress. At first, the doctors were having trouble finding the bullet, which was a devastator bullet, the kind that explodes inside. One time, the nurse came and said, “We just can’t seem to get it out. We may just have to leave it in.” Well, that didn’t sound so good to me. And then another time, she said, “They’ve found it, but the doctor is having a hard time removing it–it keeps slipping from his fingers.” Finally, she came back and told me that the doctor had gotten it out, but I almost lost him then. The bullet had been lodged an inch from Ronnie’s heart.

We were lucky–we didn’t realize how lucky, in fact–because when Ronnie had arrived, all the doctors were in the hospital for a meeting. No one had to be called in. Everyone Ronnie needed was right on hand, and there was no waiting. …

I wanted to stay there all night, but the feeling was that it would be better for the country if I left and went back to sleep at the White House. Otherwise, people would have assumed the worst and there would have been panic. As it was, Ronnie’s aides had to do all they could to calm the country down. The briefings made to the press were partial, to say the least. The assassination attempt was really a much closer call than people were led to believe at the time. Everyone was trying not to frighten the people in the country, but the fact was, Ronnie almost died. It was a miracle that he didn’t. And I knew all along how serious things really were. …

Needless to say, I was terrified. After the shooting, every time Ronnie walked out the door to make a public appearance, my heart would stop–and it wouldn’t start again until he came back home safely. Ronnie knew how scared I was. But if he was frightened too, he never let me know it. As always, he was cheerful and optimistic. God had spared him, he believed; there had to be a reason why. By making jokes…he tried to take the edge off my fear.

The Reagans wave from the White House after Pr...

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Who could fault the First Lady’s hovering over the President thereafter? No wonder her seeming control of his life, personal and public, for which the media liked to criticize her. I know because they had me convinced she was running the country with her husband, an unofficial cabinet member, as was constantly written and spoken of in the news. How the spinmeisters love to slant the facts. Readers, beware!

Fast forward to July 1989, after the Reagans had left the White House. Visiting with friends Betty and Bill Wilson at their ranch in Mexico, the President went riding. An accident occurred.

Ronnie had been thrown off his horse. He was riding with some other men, going up an incline, when one of the ranch hands had hit something that made a loud noise and spooked Ronnie’s horse.

The horse reared once, and Ronnie stayed on. It reared a second time, and Ronnie stayed on again. Two Secret Service men tried to move in and calm the horse, but they couldn’t do it. The horse reared a third time, bucking so hard that Ronnie fell off and hit his head on the ground, miraculously missing the jagged rocks all around.

President Ronald Reagan

Image by edalisse via Flickr

We got him on a plane and immediately took him to a hospital in Tucson, Arizona. He should really have stayed there, but it was my birthday and the Wilsons had planned a celebration, and Ronnie was determined to go back to the ranch. We went back–but at my insistence, we took a doctor with me.

The day after…we flew home. I was very uneasy and kept at Ronnie until he agreed to get his head X-rayed. We went to the Mayo Clinic, where we’d gone every year for checkups. It turned out that Ronnie had a concussion and a subdural hematoma. He needed to be operated on right away. It all happened so quickly that I think, once again, I was in shock. …

I’ve always had the feeling that the severe blow to his head in 1989 hastened the onset of Ronnie’s Alzheimer’s. The doctors think so, too. In the years leading up to the diagnosis of the disease, in August 1994, he had not shown symptoms of the illness. I didn’t suspect that Ronnie was ill when we went back to the Mayo Clinic that summer for our regular checkup. When the doctors told us they’d found symptoms of Alzheimer’s, I was dumbfounded. Ronnie’s fall from the horse had worried me terribly, of course, and I’d had to urge him to take time out to recover after his operation. But I had seen no signs of anything else.

There’s no telling if President Reagan would have enjoyed more years of retirement, free from the debilitating symptoms of Alzheimer’s. How fragile the brain, with only the skull as protection from the hazards of everyday life…like horse back riding. Spared from the assassin’s bullet, Reagan succumbed to no less a devastating end. As his devoted wife, and true witness to her husband’s last 50 years on earth, Nancy Reagan suffered Alzheimer’s alongside him.

Senator Corker greets former First Lady Nancy ...

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…First of all, there is a feeling of loneliness when you’re in this situation. Not that your friends aren’t supportive of you; they are. But no one can really know what it’s like unless they’ve traveled this path–and there are many right now traveling the same path I am. You know that it’s a progressive disease and that there’s no place to go but down, no light at the end of the tunnel. You get tired and frustrated, because you have no control and you feel helpless. We’ve had an extraordinary life, and I’ve been blessed to have been married for almost fifty years to a man I deeply love–but the other side of the coin is that it makes it harder. There are so many memories that I can no longer share, which makes it very difficult. When it comes right down to it, you’re in it alone. Each day is different, and you get up, put one foot in front of the other, and go–and love; just love.

I try to remember Ronnie telling me so many times that God has a plan for us which we don’t understand now but one day will, or my mother saying that you play the hand that’s dealt you. It’s hard, but even now there are moments Ronnie has given me that I wouldn’t trade for anything. Alzheimer’s is a truly long, long good-bye. But it’s the living out of love.

Photograph of Newlyweds Ronald Reagan and Nanc...

Image by The U.S. National Archives via Flickr

…blest by true love…even in the face of adversity…hugmamma. 

 

“shaka, bra…”

Sunset from Ka'annapali, Maui, Hawaiian Islands

Image by Mastery of Maps via Flickr

That’s Hawaiian speak for “it’s easy,” “no worries,” “right on.” At least that’s what I’ve thought it to mean when I lived and played in the islands, decades ago. I’m sure over time it’s come to mean more things to more people. In fact, I was pleasantly surprised to find the following email from kamaainas (non-locals who become locals by virtue of moving to Hawaii or owning property there). I don’t know them personally, but feel I do through their intermittent communication. Hope you enjoy this mini “pigeon-english” lesson. Never know, it might come in handy on a future visit to my native island paradise.

Aloha!
The “shaka” sign has meant many things over the years and is a definite part of Hawaiian culture and the aloha spirit that is always present in Hawai’i. Today, it can mean many things, including “Howzit?” (How’s it going?), “No worries!”, “Thanks!” and much more. It is by far the most well-known and used gesture by Hawai’i locals and islanders, men, women, and keiki (children) alike. It’s used as a gesture of friendship, to greet, and to say goodbye. It’s how local people wave at others. Interpreted to mean “hang loose” or “right on,” the “shaka” sign is a constant reminder that in Hawaii, it is not the norm to worry or rush. “Shaka” represents the embodiment of “island style.” It signals that everything is all right.

Road to Hana, Maui, Hawaiian Islands

Image by Mastery of Maps via Flickr

The “shaka” sign is more than just nonverbal communication. When you use it, you acknowledge the true concept of aloha and participate in the synergistic heartbeat of Hawai’i. A guest expressed it this way: “We remember when we got our first “shaka” in Hawai’i. We were enjoying the drive on the road to Hana. We looked in the rearview mirror and noticed a pickup truck following behind us. We assumed the folks in the truck were local residents and weren’t on a sightseeing mission as we were, so at our first opportunity, we pulled over to let the truck pass by us. As the truck passed, the passenger gave us a ‘shaka’.” (By the way, local residents will always appreciate your pulling over to allow them to pass if you are driving slowly.)

Edited photo of

Image via Wikipedia

To make a “shaka,” extend your thumb and pinkie while curling in the index and middle fingers. You can rotate your wrist too.

The “shaka” is a simple, yet powerful, way to remind locals and visitors of the way people look out for each other on the Islands, and strive to spread aloha day in, and day out, in keeping with the Hawaiian principle of “malama i kekahi i kekahi,”…”take care of one, take care of all.”

If you’re new to the islands, don’t be shy about throwing up “shakas.” Just make sure you’ve got the hand gesture down first!

road to hana

A hui hou…
Anne & Wes

 
 

 

 

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...

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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...

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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.