Saturday, July 19, 2014

PTSD and Combat Increase Alzheimer’s Risk

When it comes to war, we often worry about our loved ones safety and pray they will come home unharmed. It doesn’t usually happen that way. Some come home with outward injuries, but appearances can be deceptive. Those who appear uninjured often suffer the invisible scars of PTSD (posttraumatic stress disorder) or TBI (traumatic brain injury).

I saw firsthand the effects of PTSD and how life-disrupting it can be. Vietnam changed Jim. I could see some of those changes immediately—sudden loud noises could send him to the ground. While on R&R from Vietnam, the drums from a luau on the beach threw him into instant combat mode. Later, it would be fireworks, gunshots, nightmares, flashbacks, or mental breaks that ripped the scabs off the scars.

Of course, Jim went on to develop dementia, and I couldn’t help but wonder if his PTSD or exposure to Agent Orange could have been an underlying factor. At the time, I found an article linking PTSD to shrinkage of the hippocampus, the brain’s gateway for new memories. VA doctors dismissed the possibility of PTSD playing any part in his memory loss.

Various studies have shown that PTSD is indeed a risk factor for dementia. In addition to PTSD studies are now underway to examine the risk of combat TBI. Brain injury isn’t always caused by a blow to the head; it can also be caused by blasts. In fact, blasts are the cause of most combat traumatic brain injuries.

The Alzheimer’s Neuroimaging Initiative is being used to compare PTSD and TBI as dementia risk factors in Vietnam veterans over age 65. They will be broken down into groups with PTSD only, TBI only, and veterans with both PTSD and TBI. Cohorts should be fully recruited by October 2014. This is the beginnings of a comprehensive study in dementia risk factors in veterans.

Vietnam veterans are being used because of their age because dementia development may take decades. The wars in Iraq, Afghanistan, and acts of terrorism has contributed to more cases of TBI.

Although I’ve focused on TBI in veterans, some of the other causes are sports, vehicle crashes, and the number one cause of TBI: falls. In the United States, 1.4 million suffer TBI each year. The three classifications of TBI are (1) mild—doesn’t knock you out, or less than thirty minutes; (2) moderate—unconscious for more than thirty minutes; and (3) severe—unconscious for more than twenty-four hours.

TBI increases dementia risk. In older adults, moderate TBI more than doubles the risk of Alzheimer’s and severe TBI increases the risk to 4.5 times that of a person who has not had a brain injury. Mild TBI does not increased risk unless it is repeated, such as that caused by contact sports or being exposed to blasts over a period of time.

Adding to the risk factors of TBI is the presence of the apolipoprotein E genotype (APOE). In a study of boxers, all of those who developed severe dementia had at least one copy of APOE-e4.  Another interesting observation with the boxers was that the greatest risk was determined by the number of rounds boxed rather than the number of times a boxer was knocked out. This would indicate that repeated mild TBI was as much of a risk factor as a small number of severe TBIs.

Part of the link between Alzheimer’s disease and TBI is the presence of the hallmarks of Alzheimer’s disease—the proteins beta-amyloid and tau. After a severe brain injury, beta-amyloid will increase within hours. Repeated mild TBI increases the protein tau and sometimes also increases beta-amyloid deposits.

As I worked my way through the statistics, I was struck by a few thoughts. One was that genetic testing on Jim showed that he one copy of APOE-e4. One copy slightly increased the risk of Alzheimer’s, but not nearly as much as two copies would have. The other thing that struck me was that Jim died at fifty-nine which would have been too young for any study with the age sixty-five threshold. Ironically, if he had not died from dementia, he would have been old enough now. Next month, he would have celebrated his 69th birthday.

Copyright © July 2014 by L.S. Fisher
http://earlyonset.blogspot.com 

Wednesday, July 9, 2014

Never Underestimate the Power of Love

The puppy came to his door on a cold winter night, shivering, whimpering, and a few timid barks. She knew she needed help, but was afraid she would get a boot in the side rather than a helping hand.

He turned on the porch light and saw her sitting there, a little puff of fur, big eyes. “I don’t want a puppy,” he said.

“Maybe she belongs to one of your neighbors and just got lost,” I said.

He turned the light off and tried to forget the puppy, but the look in those big eyes just wouldn’t go away. Back to the porch, light on, the puppy was gone. He breathed a sigh of relief.

Then a sound from the back deck let him know the puppy had merely moved to a different door. “What do I do?” he asked.

“At least give her food and water,” I suggested. “She’s too little to make it on her own.”

Once we went outside, the puppy shied away. She hid behind the barbeque grill. Finally, we coaxed her out, but she surprised us by ignoring the food and water we had put out for her. She didn’t seem to know how to eat or drink. The puppy was listless, and I had doubts that she could be saved, and if she was, would she always be timid and afraid of people?

The puppy finally took a little nourishment. He fixed a box with blankets to shelter her from the wind and weather.  The puppy settled down and went to sleep.

After calls to the neighbors, it became obvious that someone had dumped this puppy to die along the roadway. Although she was settled temporarily with some of the basics: food, water, shelter, the puppy would need a lot of patience, medical care, and most of all, love, in order to survive.

Humans, too, need this type of emotional support. When a family member has dementia, and you can no longer care for them at home, you may have to find another place for them to stay. You choose a home that will take good care of your loved one and will provide the basics and medical care they need.

Placing a loved one in long-term care doesn’t mean you walk away thinking now it is out of your hands. I believe the thing that disturbed me most when Jim was in a nursing home was the lack of visitors for some of the residents. It not only disturbed me, it disturbed the employees. They saw the loneliness, the listlessness, as day after day passed and no family member came with smiles and hugs. No one to say, “I love you.” No one to show their love by the simple act of being there, cheerful and caring.

Jim had daily visitors and family that loved him. Sometimes he didn’t really show much of a reaction—other times, his blue eyes would light up. Regardless, he knew someone would be there to spend time with him. To make him feel loved.

Love makes a life-changing difference with people—and with puppies. The puppy that had been abandoned has turned into a rambunctious, happy, healthy member of the family. Never underestimate the power of love.

copyright © by L.S. Fisher, July 2014
http://earlyonset.blogspot.com

Wednesday, July 2, 2014

Summer Begins and Starts to End

I sat out on the deck last night looking at the stars and rubbing my arms because the breeze was just a wee bit chilly. That seemed a little strange since earlier in the day, the hot, muggy air clung to my skin and made me feel like I was trying to breathe underwater.

When I was young, summer vacation always seemed to be hot, humid, and long. We lived in the country in the middle of nowhere. Playing outside meant dealing with the full blast of heat and sun. Even swimming in tepid lake water only provided temporary relief. It didn’t take long to be just as hot or hotter. There was no place to cool off except beneath a shade tree. During the hot summer months, I read a lot of books and spent most of my time trying to stay cool. I’d sit in front of the box fan, dressed in tank tops and shorts, reading a book.

Nighttime didn’t always bring relief. Windows were left open and a fan would blow the cooler night air in, or on some nights, it might be reversed to blow hot air out.

Yes, summer in Missouri can be a scorcher, if you’re not loitering under the air conditioner. Of course, that’s the very reason that outside can seem unbearable. It’s hard to acclimate to a twenty degree change in temperature by simply stepping over the doorsill.

I find myself chilly inside and uncomfortably warm outside. A few times, I’ve been caught off guard when I step outside wearing sweatpants and a flannel shirt.

The thing I thought about when I was looking at the stars last night is that now summer doesn’t seem to be nearly as long as I remember it from my youth. If I want to go somewhere, I walk out of my frigid house, jump in an air-conditioned car, drive to an air-conditioned store. In other words, I can pretty much avoid the heat. Not only that, but as I get older it seems that time goes by much faster. June was here and gone before I had time to turn the pages in all my calendars at home. It just zipped past.

With June being my birthday month, it kind of seems like maybe life is flashing before my eyes at times. It doesn’t help that two wonderful men I had the pleasure of knowing passed away during the final days of June. One was struck down by the cruelest of diseases—Alzheimer’s. I had been in contact with family members as they went through the day-to-day stresses, quandaries, and grief that watching a loved one fade away brings with it. Now their grief takes a new direction as they learn to live without him.

While I was still adjusting to his death, I learned of author Jory Sherman’s death. I knew Jory was not doing well and that he made the decision to go home “to die.” He wanted to spend his final days in the place he loved.

Jory was an inspiration to me when I first started writing. He critiqued my work, and I subscribed to his “story of the month.”

As soon as I learned of his death, I pulled out the Sadness of Autumn, Tales of the Ozark Hills. I knew that in Jory’s lyrical words, I would find some words of wisdom and comfort. It only took about two minutes before I came upon a passage in “Summerend” a story Jory wrote about his father’s death. Jory Sherman wrote: “There was the voice of him in the stark yellow wind that blew in my face and took my voice out of my dry throat. There was the gentle hand of him in fallow earth where he would have kneaded the soil and its seeds to a fine and green growing. There was his spirit scattered all over acres of sky and his heart moving the blood through my own and my children’s and their children’s lives. It is a sad thing when the summer begins to end.”

It seems to me that summer starts to end almost before it begins.

copyright © July 2014 by L.S. Fisher
http://earlyonset.blogspot.com

Friday, June 20, 2014

Negative Thoughts, Positive Actions

On days when I wake up and feel the urge to start the day with lifted spirits, I select a Joel Osteen sermon on the DVR. I have several to choose from and last week I watched one about negative thoughts.

Joel said that negative thoughts take up more space in our brains than positive ones. We find ourselves dwelling on the things that hurt us.

Did you realize that every second you are alive, your brain is actively thinking? We have between 50,000 - 70,000 thoughts each day. With 35 to 48 thoughts bouncing around in your brain each minute, it seems that some of them would have to be negative. Life deems that bad things are going to happen to good people. You are going to be put down, criticized, humiliated, make stupid mistakes, have terrible thoughts, lie, cheat, hurt other people, go a little haywire from time to time…the list goes on and on.

Well, guess what? We have this massive filing system in our brains where all those ugly moments are stored. Entire events are stored in our brains, complete with the emotions associated with them—good or bad. When something makes us retrieve a negative file, we open the Pandora’s box inside it. Rushing out of that file are all the emotions associated with the memory, taking us back to a place we don’t want to be.

When you have a loved one with Alzheimer’s you can build up a huge emotional file cabinet. I gave a presentation on caregiver emotions last week at the Senior Center in Warsaw, Missouri. We talked about guilt, resentment, worry, anger, loneliness, defensiveness, and grief. These are common emotions stored in caregivers’ memories. We also talked about strategies to take control over these emotions.

Now that I’m getting older and more philosophical, I find myself wondering just exactly how those pesky negative thoughts pop into my head and how to lessen their impact on my daily life. Joel Osteen said that when negative emotions dominate our thoughts, we need to switch the channel instead of replaying those hurts.

A similar idea surfaced in an article written by Joseph M. Carver, Ph.D, psychologist. He points out that the brain operates automatically, pulling files randomly throughout each day depending on memory triggers. “When the brain operates on automatic, the files it pulls are greatly influenced by our mood. For example, if you are severely depressed, if your brain is on ‘automatic,’ it will pull nothing but bad, trash, and garbage files.” A powerful tool at our disposal, according to Dr. Carver, is the ability to change a depressed mood by “simply switching the brain to manual, taking more control over our thoughts.” Or, as Joel Osteen put it, switch the channel.

Although I don’t think I have as much negative energy bouncing around in my brain as I once had, the occasional pessimistic thought can dominate my thinking. Fortunately, I’ve learned how to “switch the channel.”

The goal is not to bury emotions. In fact, the opposite is often more beneficial. If we can deal with our emotions immediately, the solutions is stored along with the traumatic experience and helps us cope with that emotion. Yes, most of us can direct our thoughts into a positive direction. At first, I couldn’t even tell people that Jim was diagnosed with Alzheimer’s without choking up and bursting out in tears. I took control of my thoughts by turning a negative into a positive. I started to speak about Alzheimer’s, began the Early Onset Blog, and became an Alzheimer’s advocate.

Chemicals in our brains determine our moods and feelings. Sometimes traumatic events or long-term negative thoughts can throw our brain’s chemical balance out of whack. When that happens, it may be necessary to take medication to bring the chemicals back in balance. Through positive thinking, physical activity, and mental stimulation, we can handle temporary or fleeting negative emotions.  

Earlier, I compared the brain’s negative emotions to opening Pandora’s box, but the most important part of the legend is what she found in the bottom of what she believed to be an empty box. When she opened it again to show it was empty,  Hope was released. We, too, can replace negative emotions with hope by taking control and switching the channel.

copyright © June 2014 by L.S. Fisher
earlyonset.blogspot.com

Sources:
Joel Osteen, www.joelosteen.com, Joel and Victoria’s Blog, February 28, 2014
“Emotional Memory Management,” www.drjoecarver.com, Joseph M. Carver, Ph. D., Psychologist  

Monday, June 9, 2014

Alzheimer's Experience—Effective, But Cruel Teacher

Jessica Snell, Alzheimer's Volunteer
I’m sure you’ve heard that experience is the best teacher. I’ve come to the conclusion that not only is it the best teacher, it can also be the cruelest teacher when it comes to an Alzheimer’s caregiver.

When life delivers a knockout punch, we have two choices: Lay on the mat and writhe in pain, or push off the mat and stand up and fight back. Experience tells us the only way to survive is to drag our butts off the ground and prepare ourselves to do battle.

You’ve seen it haven’t you? I’m referring to those life warriors who leave shock and awe in their wake as they fight back against all odds. The Davids of affliction fighting the Goliaths of disease. These warriors don’t know the meaning of giving up, or quitting. They trampoline off the mat reaching new heights, beyond anything they could have imagined.

In the past fifteen years I’ve met hundreds of amazing caregivers and people with dementia. There’s Tracy who has lived with dementia for more than a decade. She worked at several different jobs, raised a child, and gone through marital ups and downs. The one thing she has never done is give up. She makes the most of each day placing her trust in God. Another friend, Karen, showed tremendous strength by keeping her husband at home until his death from familial Alzheimer’s. I’ve seen courageous people step out of their comfort zone to become speakers, support group facilitators, advocates, and fundraisers.

Not everyone goes forth and becomes a public face, but that doesn’t mean they have given up. They do what they have to do, excel at it, and quietly go about their business. Casual acquaintances never notice the soul scars left from being a caregiver to a loved one with dementia. 

Last week, I spoke to a group of local business leaders about Alzheimer’s, the September 6 Walk, and several upcoming team fundraising events. When I finished, a man sitting next to me gave an impassioned testimony to the difficulty of taking care of a loved one with Alzheimer’s. “Only someone who has provided care can really know how hard it is,”  he said. Bullseye.

Being a caregiver is the hardest job I ever tackled in my life. The most famous Alzheimer’s disease caregiver’s guide  is called The 36-Hour Day for a reason. When I first read the book, it scared me. I thought that surely, only rare cases got that bad. And after the initial shock, and realization that yes, it could be that bad, I panicked as I doubted my ability to do this.

Experience became my teacher. At first, I learned from other people’s experiences. In turn, I passed on their experiences and added my own to the mix. We Alzheimer’s caregivers have to think on our feet, be creative, and not be afraid to call for help.

It is when we internalize our caregiving fears and anxieties that we set ourselves up for failure. And, failure is not an option when someone needs our attention, devotion, and loving care. Part of being a successful caregiver is to become part of something bigger than yourself. That can be personal spirituality or it can be a public commitment as a volunteer.     

As a volunteer, I found that I helped myself as much as I helped the Alzheimer's Association. It also allowed me to keep company with more amazing people. 

In the midst of a downpour Saturday morning, I attended a fundraiser organized by two of our walk team captains. I was happy to see the weather hadnt deterred anyone from eating a delicious breakfast. Jessica Snell, team captain and co-chair of our Sedalia Walk, wore an Alzheimer’s awareness T-shirt that said,  “We don’t know how strong we are until being strong is the only choice.”

This slogan is used for many diseases because it has a universal appeal for anyone who has been surprised by his or her inner warrior. Understanding this concept is the diploma handed out by the cruel teacher of life to those who refuse to stay on the mat.

copyright © June 2014 by L.S. Fisher

Friday, June 6, 2014

Alzheimer's Speaker at Senior Center, Warsaw, MO

Linda Fisher, Sedalia, MO, author and speaker, will present a one-hour program on Caregiver Emotions, 10:00 a.m., June 12, at the Senior Center at Harbor Village, Warsaw. The presentation focuses on Alzheimer’s caregivers, but caregivers for other diseases are encouraged to attend.

“Being a caregiver for a loved one is on-the-job training for a job you never wanted,” Fisher said. “Caregiving is an emotional rollercoaster. Before you tackle caregiving, it is essential to  take care of your own emotional wellbeing.”

Fisher became an Alzheimer’s Association volunteer when her husband developed dementia at forty-nine years old. She is an award-winning author and blogger who has published six books of essays from her early-onset Alzheimer’s blog at http://earlyonset.blogspot.com. She is an Alzheimer’s advocate and serves on the Alzheimer’s Association Greater Missouri Chapter Board of Directors.


The presentation is free and open to the public. Reservations are not required, but RSVP’s are appreciated. For more information contact Charlene, Senior Center, at 660-438-3569.

Monday, June 2, 2014

Moving On

Life is always moving forward, and I participated in two different types of promotions this week. One promotion was my grandson from kindergarten to first grade complete with cap and gown. The children performed delightful programs, but not all entertainment was during the performances. My grandson decided his hat was more comfortable twisted sideways and that was how he wore it most of the evening. The boy sitting next to him had his tassel swinging between his eyes.

We ended the evening with cakes, cupcakes and punch. One cake said, “Goodbye Kindergarten” and the other, “Hello First Grade.”  I’m sure time will fly by between now and the day this group of youngsters will walk the stage again to receive high school diplomas. It might be interesting to compare their behavior at that graduation with this one.
  
The other “moving on” event this week involved a promotion from the world of work to retirement. Staff, board members, and former board members surprised Linda Newkirk, executive director of the Alzheimer’s Association Greater Missouri Chapter, with a retirement reception.

It was good to see some of the former board members I had lost contact with over the years. Some of the Board members at the reception were those I had served with the first time. After a self-introduction, each person told of his or her connection with the disease, the chapter, with Linda, and more importantly—the mission.

We were a roomful of people who understood the heartbreak and challenges of Alzheimer’s. Like many of us, Linda’s first connection with the Alzheimer’s Association was because of a loved one with dementia. She found the information, support, and resources she needed.

Later, Linda was offered a job with the Chapter and eventually was promoted to executive director. Her positive, capable leadership helped our chapter flourish. She isn’t one to seek the limelight and was a little uncomfortable with being the center of attention in a roomful of people who wanted to honor her and her accomplishments.

I served on the Chapter board for six years, was off six years, and returned in 2012. Because of my hiatus from the board, I wasn’t on the board when they hired Linda as the executive director. I really got to know her better when I approached her with the idea of the Alzheimer’s anthology. She immediately supported the idea—which was amazing considering I had no experience in publishing a book. I just had a big idea, and she became one of my staunch supporters.   

We will miss Linda’s leadership. She guided us through the transition becoming a national chapter. When two Missouri chapters consolidated into the Greater Missouri Chapter, Linda stepped up as the executive director for a much larger area. Linda’s main focus has been to ensure the Chapter succeeds in its mission to provide excellent service to folks coping with Alzheimer’s disease.

The board members dished out a lot of good natured teasing about Linda chairing the Columbia walk. Oddly enough, that didn’t seem to be on her retirement agenda. Linda is saying “Goodbye Work World” and “Hello Retirement.” She is moving on and we just need to step out of her way.

copyright © June 2014 by L.S. Fisher

http://earlyonset.blogspot.com

Monday, May 26, 2014

Memorial Day Traditions

My earliest memory of Memorial Day was going to the cemetery to place flowers on graves. It always made me feel just a little bit weird to realize that in the ground beneath my feet lay all that remained of a human body. Since I didn’t have x-ray vision, I imagined that mummified bodies lay in air-tight coffins. When we visited the old cemeteries where some of the graves were sunken, I carefully avoided those areas fearful that I might fall through.

I always noticed the American flags, but most of the graves we visited were family and not necessarily military. Sometimes we would run into other family members who were placing plastic floral arrangements on graves. Then, it was a time to enjoy seeing the living.

It seems it was usually hot, and shade is hard to come by in most cemeteries. Often a table is set up where you can make donations for the upkeep. Nobody likes to see overgrown brushy cemeteries. The old cemetery where my great-grandparents are buried is usually cleared by family members. I saw some people on Facebook planning a time to work on it since it wasn’t done this year.

Most people celebrate life on Memorial Weekend with picnics. The red, white, and blue is the only thing that says Memorial Day more than grilled hotdogs and hamburgers.

For the last nine years I have visited the Missouri Veterans Cemetery in Higginsville for their Memorial Day Services. Although several artificial arrangements will be placed on graves, the cemetery rules call for cut flowers. Flowers are usually easy to find, but  it is a challenge to find a plastic (unbreakable) vase to put them in. This year, I lucked out. I bought a dozen roses and found a clear plastic container. I decorated it with patriotic duck tape and with some red ribbon. I always like to put Jim’s name on the arrangement I take, but this year it suddenly occurred to me to put his picture too. I printed out a shipping label, covered it with clear packing tape. I was pleased with the results.

This year, my sister-in-law Ginger and my great-niece made the trip with me. We stopped at McDonald’s and arrived at the cemetery a mere twenty minutes before the scheduled start time. We were directed to park near the new columbarium. We followed the sidewalk, crossed the bridge, and made it to the original columbarium just in time for the services to begin. The special guest speaker, Senator David Pearce, talked about how families had put special inscriptions on the stones. He began to read a few of them and one was “Rest High on That Mountain”—Jim’s stone.

Mayor Bill Kolas, Higginsville, spoke about how the traditions of Memorial Day has changed. Memorial Day used to be the signal that it was okay to wear white shoes. Of course, in today’s world, we wear white shoes when we feel like it. Instead of being “Decoration Day” to honor the fallen, for some people it’s all about picnics and sports. He talked about how school children no longer learn the history of World War I, or World War II—how they’ve never learned about Pearl Harbor, Normandy, Iwo Jima, Okinawa—because text book companies have left them out. This lack of history, he said, included governments. When President Charles DeGaulle demanded that all U.S. troops be evacuated off French soil, President Johnson directed Secretary of State Rusk to ask if that included the American soldiers buried there.

I was able to walk along the side and placed the roses in front of Jim’s niche during the ceremony. I stood beneath the shade of my umbrella for the remainder of the program. When the speakers were finished, the rifle volley and “Taps” reminded us more than words of the veteran’s sacrifices for the good of the country, for our freedom.

It was a lovely service in a beautiful cemetery that honors our Missouri Veterans. Flags from the branches of service, the POW flag, the Missouri State Flag, and Old Glory flapped in the breeze, keeping watch over the veterans.  As the crowd began to clear, peace blanketed the cemetery.

copyright © by L.S. Fisher, May 2014

http://earlyonset.blogspot.com