Saturday, June 25, 2016

Alzheimer’s and Veterans

When Jim joined the army and went to Vietnam, my biggest worry was that he wouldn’t come home. I breathed a huge sigh of relief when he got off the plane in Kansas City, never expecting that part of his mind would always remain in the jungle. He had PTSD before it had a name, but even though we didn’t know what to call it, we knew its insidious nature.

Jim went through years of depression. He spent time in a stress unit, trying to deal with the dark feelings that brought him down to lower and lower levels. Jim would sometimes tell me, “You would be better off without me” trying to prepare me when suicide seemed the way out of the living nightmare brought on by PTSD.

The final insult to Jim’s quality of life was when dementia played more havoc with his brain. The odd thing about dementia is that as it robs a person of short-term memory, long-term memory seems more recent. One day in a restaurant, Jim began to sob uncontrollably as he vividly recalled an incident from Vietnam.

I always believed that Jim’s tour of duty had much more to do with his dementia than the VA would ever admit. Researchers agree that a definite link exists between PTSD and dementia.  A study conducted by the U.S. Department of Defense concluded that veterans with PTSD are 77% more likely to develop dementia than veterans who do not have it.

I’ve been an advocate for Alzheimer’s research for several years. Currently, I am the Alzheimer’s Ambassador for Congresswoman Vicky Hartzler. When I visit the Congresswoman or her staff, I always know they are listening. I’ve often been pleasantly surprised when she goes beyond my expectations.

Today, I read Congresswoman Hartzler’s newsletter and saw an article, “Expanding Alzheimer’s Research.” She proposed an amendment to the FY2017 Department of Defense Appropriations Bill to increase funding for Alzheimer’s research. When proposing the amendment, Hartzler said, “Alzheimer’s is a heartbreaking disease devastating lives, crushing families, and potentially bankrupting our nation.”

In her newsletter, she said, “Studies show our soldiers are at a higher risk of developing Alzheimer’s due to the nature of their service. Focusing research on their conditions can not only help prevent this disease from ravishing our veterans, it can also provide hope for millions of Americans at risk or suffering from the disease.”

The amendment supplements the Congressionally Directed Medical Research Program of the Department of Defense Health Program by an additional $5 million, bringing the total to $20 million. The amendment to the Department of Defense appropriations bill passed on the House floor (282-138) earlier this week.

I am deeply grateful to Vicky Hartzler for looking out for our veterans and the more than five million Americans who currently have Alzheimer’s disease.      
  
Copyright © June 2016 by L.S. Fisher

Tuesday, June 14, 2016

Brains Matter

June is Alzheimer’s and Brain Awareness Month. The Alzheimer’s Association has released a document listing truths about Alzheimer’s disease. I’m familiar with all the truths, and I’ve been sharing them on social media.

The truth I want to focus on today is that Alzheimer’s is not a normal part of aging. Age is a risk factor and our odds of getting the disease go up as we grow older. Alzheimer’s progressively destroys the brain, relentlessly stripping away reasoning, memory, and personality.

I’ve never really worried too much about my brain as long as it clicks along doing its job efficiently and effectively. Sometimes, I get frustrated when I can’t retrieve an important fact or detail at the time I need the information. At other times, random memories, or thoughts, pop to the forefront, and in my haste to share, I start in the middle of a conversation. It takes awhile for me to realize no one else has a clue as to what I’m talking about, and I need to start at the beginning.

One thing I’ve always noticed is that when I’m stressed, I do not think clearly. While I was reading up on brains this Sunday morning, it became clear that I’m not alone with this problem. Research shows that stress, especially long-term stress or PTSD, affects the white matter of our brains and can cause damage.

Unless white matter does its job unhindered, our brains can’t retrieve all the information stored in our gray matter. The gray matter is where our memories, emotions, speech, and sensory perceptions are stored.

I found a clear example of how white and gray matter work together to make our brain the wondrous organ it is. The gray matter of our brains can be compared to a series of computers and the white matter compared to the network cables that connect the computers together. I found this much more helpful that all the scientific explanations of neurons, glia, and long words that I could never pretend to pronounce.

I’ve always suspected there was a big difference between early onset, or young onset, Alzheimer’s and the effect of the disease on older persons. WebMD had an article that talked about how early onset Alzheimer’s can damage the white matter of the brain and how this damage can be undetected. Early Onset affects several parts of the brain and can begin with reasoning, planning, and problem solving, but Alzheimer’s later in life may first be noticed as memory loss.

Research shows that a healthy diet, exercising your body and brain (puzzles, anyone?), and social interaction help keep your brain doing what brains should do. The bottom line is that our brain matter matters!

Copyright © June 2016 by L.S. Fisher
http://earlyonset.blogspot.com

Wednesday, June 8, 2016

What’s Right Is Right

I was raised to believe that it was a mark of character to treat everyone as equals and to always consider myself as an equal to anyone. Raising a family of eight children was not an easy task in the ’50s and ’60s. My mom and dad both worked hard to see that we were fed and clothed. Extras were not an option. We didn’t have much in worldly possessions, but our parents made sure that each of us kids had a sense of self-worth, and that money or social status didn't make snooty people better than we were. They also taught us to never, ever look down on the less fortunate.

When I married Jim, I married a man with the same principles. Jim strongly  believed in standing up for what was right. He came home from Vietnam with a neck injury that would not heal. After he was discharged, we went to St. Louis to get a service connection. It should have been a slam dunk—but wait—the V.A. had lost his medical records. Jim was smart enough to know he needed representation, and our DAV rep marched back into the records room and returned with Jim’s “lost” medical records in ten minutes.

Jim was tenacious when it came to what is right is right. He entered into a four-decade battle with the V.A. keeping his claim open. During that time, the V.A. Hospital left metal fragments in his neck during surgery, charged our insurance through my employer for service-connected surgery, and treated Jim with a lack of respect. Oh, do you think Jim let them get away with any of those travesties? Not a chance. What’s right is right.

No doubt, Jim learned some of his tenaciousness from his mother, my beloved mother-in-law Virginia. She was a bulldog when it came to equal and fair treatment for her children. The adjective that describes her best is feisty. Virginia, who served her husband and family with love and devotion, was often known to say, “What’s sauce for the goose, is sauce for the gander.” She believed in the Golden Rule, and wouldn’t stand quietly by when it came to injustice.

I never had Jim or Virginia’s constant tenaciousness. Mine is more sporadic and, you might say, mission oriented. One of my missions involves being an Alzheimer’s advocate.

I’ve discovered going the extra distance makes a difference. As an advocate for Alzheimer’s, I’ve learned that working in the system can bring about amazing results. I’ve seen a lot of change during my 16 trips to D.C. as an Alzheimer’s advocate and ambassador. We had only small successes for the first 14 years.

However, in the past week, we advocates received two exciting pieces of news. The U.S. Senate Labor-HHS Appropriations Subcommittee approved our requested $400 million increase in Alzheimer’s research funding for FY2017. In addition, the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act (S. 857/H.R. 1559) has been included in the Senate Labor, Health and Human Services (Labor-HHS) Appropriations Committee FY2017 Funding Bill. The HOPE for Alzheimer’s Act addresses a critical gap in care and support. Both of these pieces of legislation will help rectify some of the inequities of the past when Alzheimer’s was swept under the proverbial carpet, and five million Americans and their families were left without hope.  

As an advocate, I’ve worked with good people in both major political parties. This is one reason I try to stay out of political discussions on Facebook or in the news. Sometimes I have to sit on my hands, and I’ve deleted a lot of sites from my newsfeed.

An item popped up this morning that just underscored that goose and gander sauce still isn’t the same. The big news today is how much Hillary Clinton spends on her clothes. To be completely politically unbiased, Sarah Palin went through the same scrutiny. Have you ever once seen how much a male candidate pays for his custom suits, silk ties, or shoes? Well, I haven’t. What’s right is right.

Injustice and inequalities will always exist. Sometimes we can only chip away at one small thing at a time. One of the lessons I’ve learned from people I truly admire is that what’s sauce for the goose, should be equal to the sauce for the gander.

I’m not the world’s greatest cook, but I know a little bit about making sauce. For it to be good, it takes careful preparation. It must be mixed perfectly from the right ingredients, stirred as needed, left to simmer, and then stirred again. If done perfectly, it turns out just right.

Copyright © June 2016 by L.S. Fisher
http://earlyonset.blogspot.com

Sunday, May 29, 2016

A Weekend of Remembrance

Memorial weekend has always been a time to reflect on those who have gone on to a better place. “Decoration Day” originated following the Civil War to honor those who died while fighting in the war. General John A. Logan, representing northern Civil War Veterans, called for the nation to decorate the graves of those who died during the war and whose bodies were buried throughout the land. He chose the date of May 30 because it did not coincide with any major battle.

The first Decoration Day was celebrated at Arlington where 20,000 Union and Confederate soldiers were buried. After General James Garfield’s speech, volunteers decorated the graves of the war dead.

The holiday became known as Memorial Day and during World War I, it became a day to remember all who died in battle. In 1971, the date was changed to the last Monday in May to comply with the 1968 Uniform Monday Holiday Act.

Since 2005, I’ve always driven to Missouri Veterans Cemetery at Higginsville for the Memorial Day ceremony and to place flowers in front of Jim’s niche. This year, thinking ahead, I purchased flowers on Friday. Saturday morning, my son asked me if I wanted to go to Higginsville with him and his family. After giving it a few moments thought, I quickly made the decision that a day with family would be a better way to spend the day. Sort of an answer to the question: what would Jim do?

After our visit to the Missouri Veteran’s Cemetery, we decided to get a few stamps on my grandkid’s “Passport” to Missouri’s numerous state parks and historical sites. They already had one “stamp” and decided to pick up a couple more. The Veterans Cemetery is next to the Confederate Cemetery and only a short distance from the Battle of Lexington State Historic site. We spent a day learning more about the war that began the entire tradition of the holiday.

The weekend of remembrance continued on with church services this morning. We were encouraged to write the names of loved one who had passed away on a piece of yellow paper and place them on a wreath at the front of the sanctuary.

As I was sitting, head bowed, during a moment of prayer, an image of Jim popped into my mind. He had a big smile on his face and stood at a  split-rail fence, with one foot propped up on a rail. I couldn’t help but wonder if it was a memory or a visual reassurance of the here and now. A thought crossed my mind that because dementia snatched him away, I’ll never know what he would have looked like as an old man.

Jim was a veteran, and although he didn’t lose his life in Vietnam, he certainly lost some of his spirit. I’ll never forget how devastated he was the first time we visited the Wall in Washington, D.C. Every day is Memorial Day at the Wall.

Judging from the traffic this weekend, I’d say most people are more interested in the three-day holiday than anything to do with Memorial Day itself. Picnics and celebrations abound during this holiday weekend. Isn’t it a little strange to say “Happy Memorial Day” or “have fun this weekend”? Maybe, maybe not. After all, our love of life and country are made possible because of the men and women who offered up, or made, the ultimate sacrifice. We need to appreciate the legacy they left us, and in turn, pay it forward to the next generation.

Copyright © May 2016 by L.S. Fisher

Thursday, May 19, 2016

The Real World

My graduation from WWU 2005
As always, May is a turning point in young lives everywhere. The caps and gowns are a visible symbol of young people leaving the comfortable nest of home and “Pomp and Circumstance” into  the “real world.”

My two oldest grandchildren both earned the all important diploma to signify their accomplishments, one for college and the other high-school and college bound. Although I’ve been with them through the years, it doesn’t seem possible they are both adults now.

I can imagine how proud their Grandpa Jim would have been! The grandkids were the center of his life, before his real world became a scary and confusing place.

I can’t help but compare the world today to what it was when I graduated high school long, long ago. When I was a teenager,  problems and failures were private family business, not shared with the world via the internet. I probably have a dozen photos of me growing up, but now kids may have a dozen photos posted online in a single day.

In my wildest imagination, I could never have predicted a time when we would carry around a device in our pockets with access to the entire world at our fingertips. I couldn’t have foreseen flipping through hundreds of channels on a television set. We had three channels and the remote control was whichever  kid was told to turn the channel, and rotate the antennae.

We still don’t have flying cars like the Jetson’s had, but some have truly amazing optional features available: Cars that warn you if someone is in your blind spot, adjustable everything, and cameras that seem to know exactly where to point.

My son told a story about his daughter sitting in an older vehicle. Looking around, she pointed at the manual window crank, and asked, “What’s that for?”

“You roll the window down with it,” my son said, demonstrating.

“Well, that’s just stupid,” she said.

My pursuit of a degree was delayed due to having children and then going through many years of trying to stretch the dollars to pay the bills. I received an associate’s degree from a community college when my kids were young, but didn’t get my bachelor’s until 2005.

School certainly changed between high school and community college. I tested out of a math class in junior college without realizing that it wasn’t considered cheating to use a calculator. Who knew?

By the time I was working on my bachelors, I had a PC and internet. I took online classes. One of my classes required us to check out websites and evaluate them for trustworthiness. In many ways, getting my degree later in life gave me skills and confidence to tap into the power of technology.

The changes I’ve seen throughout my lifetime, make me realize how mind boggling the world will be in another century. What will the world be like for my grandchildren when they are my age? What will the “real world” be like then?

Copyright © May 2016 by L.S. Fisher

Tuesday, May 10, 2016

Snapshot

Jim in Oregon 1994
A few mornings ago, my husband woke me up. “You’re a bed hog and I have proof,” he said.

I opened one eye and glanced at the photo on his phone. The photo clearly showed me sprawled face-down with arms and legs stretched out from cover the entire bed. One leg was out from other the covers, and I was rocking the blue plaid pajamas and red and white polka-dot socks.

“I’m going to sign into your Facebook account and make this your profile picture,” Harold said, teasing me.

“Knock yourself out,” I said, as I rolled over and went back to sleep. 

We live in an age where anything can be captured in a digital photo. That can be good, or it can be bad. Photos and video clips have caused riots, property damage, and deaths. On the flip side, photos can touch us in a special way when we see the beauty of a tiny newborn baby, a cute animal, or a digital version of an old family photo.

Because of the capability of social media photo sharing, I’ve had the pleasure of seeing photos for the first time although they were taken decades ago. These photos can bring back memories of times long gone by. These rare, family photos reside in a file on my Iomega external drive where I can access them at my convenience.

I’ve always enjoyed taking photos. Jim was the videographer, but I was the snapshot queen. Before any special occasion, I stocked up on rolls of film. A roll of film would take 24 or 36 photos. How well they would turn out was always a surprise. The occasion would be long past by the time the film was processed. Even worse were double exposures. Some cameras did not automatically advance the film, or you could accidently run the same roll through twice.

One time when Eric was a baby, we took a roll of film capturing some memories. Unfortunately, when the pictures came back, they were of another family. I didn’t have any luck tracking down our photos, and the other family’s vacation photos were never returned to them.

Photos can help us remember small moments as well as the important times in our lives. I recently looked through an album of photos taken during one of our Oregon trips in 1994. It brings back memories of how Jim loved to travel, especially to Oregon. Jim enjoyed showing me out-of-the-way places—and of course, the back roads.  

When Jim’s memory was fading, he still recognized some people in photos. I came home from work one day and the caregiver said, “He showed me the picture of your daughter’s wedding.” Jim had pointed to the photo of our son’s recent marriage. He said, “Stacey’s wedding.” For some reason, he had trouble remembering our son’s name, but he had correctly identified the bride.

I fixed up a few small photo albums for Jim to keep at the nursing home. One day he tapped his finger on a photo and of his brother and his wife and said, “Bob and Barb.”  

At a recent three-day conference, I took nearly 500 photos. At one point my 16 GB memory card was full and I deleted enough duplicate photos that I could keep on shooting snapshots. The photos I had taken did not fill the card, but I kept downloaded photos on the card the Iomega drive is backed up.

I’m in the process of organizing my “red drive” where I store my photos. So far, I have nearly 80,000 photos stored in 5,530 files. My digital photos make organizing the boxes of printed photos seem quite underwhelming.

I rarely print photos anymore, but when I do, I no longer have to wait patiently to see how they will turn out. I can enlarge them on my screen and crop, zoom in, enhance the lighting or color. I don’t have to worry about them being lost with one-hour photo.
Snapshots are visual memories. Some will be treasured by our descendents and others will be relegated to the recycle bin. In the meantime, trips down memory lane are just a few clicks away.

Copyright © May 2016 by L.S. Fisher
http://earlyonset.blogspot.com

Thursday, April 28, 2016

One Person Can…

I spent the weekend at the BWM State Conference with my Business Women of Missouri sisters. I always come away from these conferences energized and with new, fresh, or possibly refreshed, ideas. One such refreshed idea came during an organizing session.

Organizing presentations have a way of highlighting my inadequacies. It’s not that I don’t know the basics of organization, or even that I don’t follow some of them, but I’m an out-of-sight-out- of- mind person. I use To-Do lists, but there’s nothing like seeing a pile of unfinished paperwork to motivate me. The speaker distributed a test I had taken before that demonstrated how much multitasking slows down our work. I am the queen of multitasking…to the point that I get a lot of things done, but none finished.

One trick to avoid multitasking: set a timer and work on projects in blocks of time without those pesky time-wasting interruptions. Great idea! I started this blog post, set my timer for 30 minutes and went straight to work. I stopped the timer to go fill my glass with ice water. Reset. Typed a few lines and the phone rang. Unexpected problem I could only partially resolve. Conversation over. Reset. So, this method isn’t working so well for me so far.

Each BWM president chooses an inspiring theme that our group uses throughout the year as motivation. They are always great themes, but President Sharron has chosen a theme that speak to each of us individually and inspires accountability. Her theme, “Just One Woman Can,” opens up a realm of possibilities.

We often underestimate the difference we can make as individuals. Being an Alzheimer’s volunteer and advocate, I realize that I can make a difference. You can make a difference too!

One person can…

a)      Support Walk to End Alzheimer’s. Can’t walk? You can still help by sponsoring a walker. Dorothy Ream wasn’t able to walk, but she used to call up all her friends and ask them to pledge any amount no matter how small. She annually raised over $1,000 to support our local walk.
b)     Write a Letter or Send an E-mail. You can write a letter to your senator or representative on the state and national level to support Alzheimer’s research and legislation. Let them know providing services for families and finding a cure for Alzheimer’s is important to you. Share your story! Call your local chapter for information on current legislative issues.
c)      “Hug” a Caregiver. Providing around the clock care for a loved one leaves a person drained and stressed. The caregiver often needs some TLC too! Hugs come in many forms, especially random acts of kindness—a greeting card, flowers, a casserole, perform a household chore for the caregiver, or mow the grass.
d)     Learn the Facts. You can stay informed by signing up for email updates from the Alzheimer’s Association. Go to educational programs offered by your local chapter. Ask for brochures or pamphlets to address specific problems. Be sure to get information from reliable sources. Knowledge is power when dealing with Alzheimer’s disease.

If you think of these suggestions as a To-Do List, you see that it is only a beginning. These four items are within everyone’s reach, but you are the only one that knows what you can do to add to the list. It is personally rewarding to know that you can make a difference.

I saw a graphic a few days ago of a piece of paper and the only thing written on it was, “Write a To-Do List.” I laughed when I saw it, but you do have to begin at the beginning, after all. Checking off the “done” items is a visual reminder of the power each of us holds within our grasp. What one person can do is limited only by imagination and motivation.  
Copyright © April 2016 by L.S. Fisher

Sunday, April 17, 2016

Lost and Found

When I left for the Alzheimer’s Forum in D.C., I decided to hide some of my electronics. There’s no use in making life easier for a pesky burglar who might try to make a dime off my personal property.

I suppose if my PC was stolen, I could buy a new one. More important to me are the external drives that hold my photos and data files. I took one camera with me and hid the other. Also, before I travel, I lighten my purse. There’s no point in taking all my credit cards or gift cards. Heaven forbid that a thief would snatch my purse and abscond with my library card.

If you are going to hide something, even in a house as big as this one, you have to tuck away valuables somewhere other than the usual places: bathroom cabinets, back of underwear drawer, etc. My bad that I didn’t write down the creative hidey-holes I found. After all, I was going to be gone for nearly a week, and my mind was going to be spinning like a Texas tornado on a sultry summer day.

Sure enough, I spent an action packed time in D.C. Being around caregivers and persons living with the disease floods my heart with memories. The Alzheimer’s forum was emotionally draining this year because of the timing. April 5 was Jim’s homecoming from Vietnam. It was a special day for us, and we always celebrated.

Then, the trip home seemed more grueling than usual. I really had no complaints other than the plane ride was a little bumpy, and we landed in a forty mile-an-hour wind. I’m not nervous about flying at all, but I did breathe a small sigh of relief when the plane stopped, and the flight attendant said, “Ta-dum!” By the time I picked up my car and drove home, it was bedtime and I was exhausted.

After I caught up on my rest, it was time to gather up my hidden treasures. I couldn’t for the life of me remember where I had hidden my camera. I kept returning to a place where I thought I’d hidden it, only to come up empty. As I wandered aimlessly through the house, I saw something that triggered my memory and suddenly knew where it was.

Three days later, I remembered all the cards I’d taken out of my purse. After a moment of sheer panic, I re-checked the place where I thought I’d hidden my camera, now looking for something smaller. Whew! I could mentally check off the last item on my lost and found list.

I couldn’t help but think about another April anniversary. Eleven years ago, we lost Jim. That loss was so great that even though my mind knew it was coming, my heart wasn’t ready. As time ticks by today, I can’t help but think about those last moments of holding Jim’s hand, playing his favorite songs, and watching the light go out of his eyes. In the early morning hours of April 18, he left us.

Anger was the emotion that surprised me the most when Jim died. I was so angry that this horrible disease happened to him, to us, to our family. I was furious that he had lost ten years of being Jim before the disease took life itself from him.

I couldn’t stay angry forever, and eventually I found peace. I knew that given the choice, Jim would not have wanted to live the last decade of his life lost in the world of dementia. He would have much rather have spent the last years of his life strumming his guitar, fishing, playing with our grandkids, and camping out at Moraine Park in the Rocky Mountain National Forest. He would have preferred going out in a blaze of glory.

Jim was lost to this world, but I rediscovered my memories of him. You might say that I found them. As for Jim, I believe he found that cabin in the corner of Glory Land he used to sing about, and he walks a well-worn path to his favorite fishing hole.

Copyright © April 2016 by L.S. Fisher