Wednesday, August 14, 2019

Come Home

Each year the Missouri State Fair has a theme, and this year’s theme “Come Home” is thought provoking. Since I live a few short miles from the State Fair City, I just need to drive across town to “come home” to the fair.

Like many people in Sedalia, I’m not that thrilled about the fair. Oh, yes, I’ve enjoyed concerts, walking through the exhibits, working at the Missouri Coop Building, and have spent countless hours on the midway while I kept an eye on the young ones in the family. I have great memories, good memories, and wish-I-was-home-under-the-air-conditioner memories.

The first night of the fair this year was pleasant, but I was too exhausted to consider going. Since then, the weather has ranged from hot to bake-a-cake hot. Then, there’s the occasional thunderstorm. Oh, yes, we can be in the middle of a drought, but you can count on rain during the fair.

One of the first things that crossed my mind with “Come Home” was the exact feeling I always had when Jim and I drove into Estes Park. We went to Rocky Mountain National Park each year, and although some things changed from year-to-year, the predominant emotion was a sense of homecoming.

Along with the eventual changes in Estes Park were the inevitable changes in Jim. Our first trips, we spent camping, hiking, and going to the Lazy-B Ranch for music and a delicious meal. The last few times, we stayed in a cabin, and I watched Jim lose the ability to camp and hike. It was the end of an era for us.

While Jim was in the nursing home, I made a trip to Estes Park with my mom, sister, and sister-in-law. I hadn’t been to the mountains for several years. It was like coming home to a different house. Everything had changed so much physically and emotionally. Several of my favorite shops had closed, the visitor’s center had grown into a huge hub of activity, and the Lazy-B Ranch was no longer in existence. I didn’t have Jim to cook a campfire breakfast, to sneak treats to “Chubby” the chipmunk, or to sit around the campfire and tell tall tales.

We all know that everything changes through the years, even our home. We may long for the familiar home of our memories and to see loved ones who live in the homes of our hearts, but are no longer with us.

Home is where our stories began and where we became who we are. It doesn’t matter if we lived in a shack long ago and now live in a mansion. There is a chunk of our being that is wrapped in the recollections of our beginnings.

Home. The word isn’t just any old word. Home is a word that entails a visual image in 3-D, complete with smells and sounds. Memories of home can be good or bad for a lot of reasons. Regardless, it is a big part of each of us. The lessons we learn from our parents mingle with our DNA to mold us into the adults we become later in life.

Copyright © August 2019 by L.S. Fisher

Thursday, August 1, 2019

Not Its Intended Use

A few years ago, we received a microwave popcorn popper as a door prize at an annual meeting. The first time we tried to pop corn, the top melted and the popcorn was charred. Since it didn’t work, I prepared to dump it in the trash.

“Keep it,” my husband, the farmer, said. “We might be able to use it for something else.” I threw away the melted lid and kept the bottom part, against my better judgment. I saw the plastic bowl with a handle as a waste of space. Even as a popcorn popper, I didn’t see much use for it since I can’t eat popcorn.

Oddly enough, we use the plastic bowl almost daily for scraps and vegetable peelings. When we start preparing a meal, one of us will say, “I need the plastic bowl.” Although not its intended use, it is our most used kitchen container.

Every Memorial Day, I search for a plastic vase to take fresh flowers to the Veterans Cemetery. For the unaware, it is practically impossible to find a plastic vase. My husband came up with the idea of cutting the top off a Simply Apple juice bottle and wrapping it in patriotic duck tape. Not its intended use, but it works.

Sometimes medication can be used for a different purpose, called off-label use. It takes years to develop and test medication, but when a drug can be used for more than one condition, it dramatically shortens the time to get the drug to consumers.

One of the off-label uses for the  Alzheimer’s drug Memantine (Nameda) is for it to be added to the standard therapy used to treat obsessive-compulsive disorder (OCD) and attention deficit order (ADHD).

Antipsychotic drugs are often used off label to treat the symptoms of Alzheimer’s. One of the common drugs used is Seroquel. Another off label use for Seroquel is for Insomnia.

I believe more caution should be used in prescribing antipsychotic drugs to people with Alzheimer’s. Jim had some serious reactions to them. Seroquel was commonly prescribed to residents in the Alzheimer’s unit. They tried it on Jim and instead of calming him, it made him hyperactive. Other psychotic drugs caused him to be angry and out of control. One even caused so much foam coming out of his mouth that he couldn’t eat or drink. The physicians treating him swore they had never seen that reaction before.

Although commonly used in people with dementia, antipsychotics increase the risk of death and decrease the quality of life. While looking for a home for Jim, I visited one home where the Alzheimer’s residents appeared to be in a stupor. I thought it odd at the time, but after seeing how antipsychotic drugs affect most people with dementia, I’m sure they were overmedicated.

Not all drugs used off-label are bad. Many years go into the development of prescription drugs and off-label use of an approved drug can bring relief to a patient, or even be life-saving. For example, some cancer drugs are approved for one type of cancer, but may successfully treat a different type. Chemotherapy treatments are often a combination of drugs that fight more than one type of cancer.

Sometimes, veering from the intended purpose can be successful, and sometimes it can create problems. Antipsychotic drugs for people with dementia can be life-threatening and more harmful than helpful. Using a popcorn popper for a receptacle for scraps is handy and safe—in fact, safer than using it in the microwave!

Copyright © July 2019 by L.S. Fisher

Saturday, July 20, 2019

SHIELD for Alzheimer’s

It is hard not to be frustrated that Alzheimer’s is a terminal disease. It is easy to feel helpless and hopeless, but that is not productive. We need to grasp the reins and do everything within our power to take care of those who have the disease, find effective treatment, and find a cure. It is also a major goal to prevent Alzheimer’s in the first case. Until an immunization is perfected, research has given us tools to reduce our chances of developing Alzheimer’s, or possibly delay the onset.

Dr. Rudi Tanzi recommends lifestyle changes to reduce the risk of Alzheimer’s disease as much as 60%. He says the word shield can be used to remind you of healthy habits that can help keep your body and brain healthy.The word shield can be used to remind you of healthy habits that can help keep your body and brain healthy.

Sleep. We need our zzz’s to function. The rule of thumb used to be eight hours, but in today’s world, we don’t go to bed at dark and get up at daylight. Shift workers may have a difficult time to get a good “days” sleep. When our internal circadian clock gets out of whack (not the medical term!) the brain doesn’t go through its cycle to wash away the plagues that want to clog up our brains.

Handle stress. I don’t want to cause stress by mentioning how detrimental to a person’s health stress is. Stress releases the hormone cortisol, which can damage brain cells and cause inflammation. Recent studies indicate that brain inflammation is linked to Alzheimer’s disease. We can’t avoid stress; we can only manage it.

Interact with friends. Being socially active is your “friend” when fighting Alzheimer’s disease. By socially, I’m not talking Facebook friends who may be more annoying than helpful. I’m talking about friends who have your back and bring joy into your life. If that happens to be your Facebook friends, then by all means, interact to your heart’s content. Loneliness and isolation increases the risk of developing Alzheimer’s disease. 

Exercise. We all know the benefits of exercise. Exercise increases energy level, reduces stress, and helps us maintain a healthier body and brain. Yes, exercise helps your brain. It increases the blood flow in the brain and helps cognition. Find a physical activity you enjoy that fits your physical condition. Exercise with friends to double your fight against Alzheimer’s disease!

Learn new things. If you are like me, you want to learn new things. I learned to play the ukulele about two years ago and now I’ve joined the family band. We play music once a month in three different nursing homes. Learning new things create new synapses in your brain. How cool is that? Having fun and helping my brain.

Diet. No, don’t go on a crash diet! Yo-yo dieting is bad, bad, bad for your health. Your mama knew what she was talking about when she told you to eat your veggies. A Mediterranean type diet reduces the risk of Alzheimer’s disease. A diet rich in vegetables, fruits, legumes, whole grains, fish, and olive oil is good for your heart and your brain. So, instead of starving yourself, feed your brain!

If we do all these things are we guaranteed not to develop Alzheimer’s?  The short answer is no. If you wear a seatbelt, it does not guarantee that you will not be injured or killed in an auto accident, but it does increase your chances of survival. If you exercise and lower cholesterol, it doesn’t mean you will not have heart disease, but it lowers your risk.

Life doesn’t come with a guarantee warding off ugly diseases, but use your SHIELD for the best defense against Alzheimer’s disease.

source: Tanzi, Dr. Rudi, NBC Nightly News, July 16, 2019

Copyright © July 2019 by L.S. Fisher

Friday, July 5, 2019

Imagine a Land Free from Alzheimer’s

Our Walk to End Alzheimer’s group participated in the annual 4th of July Parade. My friend WyAnn had prepared a sign that said, Imagine a Land Free from Alzheimer’s. Along the parade route, there isn’t much time to think of anything, but after the excitement died down, I couldn’t stop thinking about that sign.

What if our land was free from Alzheimer’s? Think of how much that would impact the 5.8 million American families who have a loved one with Alzheimer’s disease. Imagine what a wonderful world this would be.

Our memories, personalities, and skills are the most basic part of our lives. Yet, dementia steals those precious qualities from people we love. Our mothers become our daughters. Our fathers become our sons. Our spouses become our children as we love them and care for them. Collectively, we American families provide 18.5 billion hours each year taking care of our own.

From personal experience, I can tell you that being a primary caregiver for someone with dementia is not for sissies or the squeamish. In the early stages, my caregiver duty was to keep Jim on track. I went to the doctor with him and kept track of his medication. His skill levels began to diminish. A man who once had the ability to tear a car down and put it back together would dismantle a vacuum sweeper or a VCR, but couldn’t reassemble the parts.

In the middle stages, caregiving was more intense. The day started with helping him bathe and get dressed for the day. These jobs became harder as the disease progressed, and he needed more help with toileting and incontinence. Jim only needed about four hours sleep, and I couldn’t sleep with him wandering around the house, or worse yet outside in the dark. His wandering was dangerous and along with other behavior problems, it was obvious he needed a safer environment.

Caregiving doesn’t end at the nursing home door! Some caregivers are comfortable with providing emotional support, interacting with staff, and supervising care. My comfort level was to make sure Jim was clean, fed, and comfortable. For the five years Jim was in nursing care, I, or a member of our family, checked on him almost every day and assisted with his care.

The clock is ticking. Every 65 seconds another person in our land begins the Alzheimer’s journey. Imagine if that didn’t happen, or if it did, it could be cured. Well, if wishing and hoping could make it happen, dementia wouldn’t exist.

According to the Alzheimer’s Association, Alzheimer’s will triple in a generation if we don’t have a medical breakthrough. We can’t have a breakthrough without research. When I first went to DC to advocate for Alzheimer’s research funding, NIH had budgeted less than $500 million for research. I know that to you and me that sounds like a lot of money, but it is barely a blip on the radar of research possibilities. Research was stalled at a time when it should have been accelerated. If you don’t see that, look at how our country used the necessary resources to find an effective treatment for HIV and AIDS. HIV/AIDS was once the inevitable death sentence that Alzheimer’s is today.

It has taken us two decades to reach a level of research funding that could bring about a positive result. Now, we need to be relentless in advocating for research dollars. We cannot afford to wait another two decades for a cure. The clock is ticking.  

Imagine if our land was free from Alzheimer’s disease.

Monday, June 24, 2019


For the past couple of years, several of us women who graduated from the same high school meet for lunch once a month. I reconnected with several friends that I hadn’t seen in years. We’ve bonded over life’s circumstances and decided that we like each other much better now that we’re older. These mini reunions led to us becoming a planning committee for our 50th class reunion.

When we think about it, life is full of reunions. A chance meeting in a grocery store, a club meeting, a conference, or a public event can be a reunion. Each year at the Walk to End Alzheimer’s I see some people I haven’t seen in quite awhile. Some return year after year, and others are just beginning the Alzheimer’s journey. These are bittersweet reunions. We are happy to see each other, sad for the circumstances.

Each year at the Alzheimer’s Forum, I have a reunion with my good friends Sarah, Jane, and Kathy. A year is a long time, but it seems that we can almost pick up our conversations from the previous year mid-sentence. We all lost our husbands to dementia and developed an amazingly strong bond. We are sisters of the heart.

We reunite with friends and relatives on social media and make new “friends.” We can keep up with births, deaths, marriages, as well as, what someone had for dinner. The important events are often interspersed with mundane observations, political rants, and too much information. The jury is still out as to whether the benefits outweigh the drawbacks.

We are caught up in our own little world and are shocked when we learn of a friend or family member’s death. What is the first thing we all say when we run into family members at funerals? “We need to get together somewhere besides a funeral!” Sound familiar? Yet, we go our separate ways and lead our separate lives. We never get around to making that call, meeting for lunch, or making that road trip.

Since I’ve joined the Capps Family Band, I spend more time with my birth family than I have in years. Although I’ve not accomplished many of my retirement goals, at least I’ve done well in spending more time with my mom and siblings. We have two practice sessions a month and play music at three different nursing homes around the middle of each month.

An additional benefit of playing music is that I get to spend more time with my aunt. She likes to hear us sing at the nursing home, so my mom and I pick her up when we play in Versailles. I think I’ve spent more time with her in the past two years than all the years before.

Whether it’s at the grocery store, a family reunion, or a chance meeting, I love running into friends and family. Even if we only have a brief conversation and a quick hug, it reminds me of the connections I’ve made throughout my life. Mini reunions make my heart sing.
Copyright © June 2019 by L.S. Fisher

Wednesday, June 12, 2019

Love Is Action

Thinking back, I can’t remember how many weddings I’ve attended. The last one, just a few days ago, was for my granddaughter, Whitney. During the ceremony, the minister said something that resonated with me. He read the standard verses from 1 Corinthians 13:4-8 that I had heard at numerous weddings. After he read the verses, he pointed out that love is described as actions, not emotions.

After the promises and commitment to a life together, I watched my beautiful granddaughter dance with her handsome groom. My eyes blurred with tears at how quickly the years have gone by. I thought of her first “wedding dance” when she was curled in her Grandpa Jim’s arm as she danced between us at her Uncle Bob and Aunt Stacey’s wedding.

The minister’s words about love being actions made me realize a truth. No matter how much someone professes their love, if their actions don’t reinforce their words, they undermine them. Too often emotions stand in the way of logic, self-respect, and in extreme cases—personal safety.

Thinking of love as action is an excellent way to begin a marriage and when the time or circumstances warrant, it is the only way to end a lifetime commitment. Love as action is the best way to describe the love of a caregiver for a spouse or other family member who has dementia.

Love is patient. A caregiver has to be patient and allow her loved one to do as much as he can for as long as he can. Yes, it might be easier and faster to do it yourself, but allow extra time for your loved one to perform daily tasks. As the disease progresses, it takes time and patience to provide the level of care that a person with dementia requires.

Love is kind. As a person loses his skills, it is important to appreciate what remains instead of complaining about what a person cannot do. To belittle a person who has dementia when they make a mistake would make as much sense as kicking someone’s broken leg because they couldn’t walk on it. Being kind will help you sleep better at night.

It is not easily angered. When a caregiver actively cultivates patience and kindness, it would follow that he would be less likely to become angry with his loved one. You may have to constantly remind yourself that it is the disease that is responsible for behavior problems.

It always protects. One of the main jobs of a caregiver is to protect your loved one. You are responsible for your loved ones safety and physical well-being. You may even be responsible for your loved one’s financial stability. A caregiver finds the strength to stand up against anyone who tries to take advantage or abuse her loved one in any way.

Love always hopes. When we can no longer hope for our loved one to regain his health, we can hope that he will have a good day. We can hope for a cure, so that a disease that stripped away our loved one’s talents, his quality of life, or her memories won’t strike others down.

Love perseveres. Dementia is not a sprint; it’s a marathon. A caregiver must have perseverance to provide loving care for years and years.

Love never fails. Unconditional love is about the only way to describe caregiver love. We all expect the love we give to be reciprocated, but when dementia is involved that may not be the case. When it comes to dementia, a parent or a spouse may become like a child. Instead of fading away, your love may become stronger as it evolves into a different kind of love—one that is action combined with the emotional memory you hold in your heart.

 Copyright © June 2019 by L.S. Fisher

Wednesday, June 5, 2019

Early and LATE Dementia

From the day Jim was diagnosed with an Alzheimer’s type of dementia, I researched the disease through all sources possible. I used the Internet, books, pamphlets, watched TV specials, and talked to some of the top researchers in the country.

My conclusion was that early onset dementia and dementia in older people seemed to be two different diseases. It seemed obvious to me that early onset progressed much faster. That didn’t seem logical since younger people generally started out with healthier bodies. Yet, I found that the median life expectancy of younger-onset Alzheimer’s was six to eight years. For those diagnosed with Alzheimer’s later in life, the average life expectancy was ten years, but could be as long as twenty years or more.

Now, researchers have discovered that some seniors who had been diagnosed with Alzheimer’s actually had a type of dementia identified as LATE (Limbic-predominant Age-related TDP-43 Encephalopathy).

Although LATE mimics Alzheimer’s disease, the proteins beta-amyloid plaques and tau tangles that are the hallmark signs of Alzheimer’s do not cause the dementia. LATE is caused by deposits of the protein TDP-43 (transactive response DNA binding protein of 43 kDa) in the brain.

The report identifying LATE was published in the April 30, 2019, issue of the journal Brain. This is a major breakthrough in how researchers will look at dementia in older adults. LATE is believed to affect 25% of seniors with dementia who are eighty-five years or older. 

At the Alzheimer’s Advocacy Forum in Washington, D.C., advocates often receive reports from Richard Hodes, M.D. director of the National Institute on Aging (NIA), part of the National Institutes of Health (NIH).  This latest development in the study of dementia can be seen as an opportunity. Dr. Hodes said, “The guidance provided in this report, including the definition of LATE, is a crucial step toward increasing awareness and advancing research for both this disease and Alzheimer’s as well.”

Abnormal TDP-3 had been previously identified in ALS (amyotrophic lateral sclerosis) also known as Lou Gehrig’s disease. TDP-3 has been found in FTLD (frontotemporal lobar degeneration). FTLD is a group of disorders that affects the frontal and/or temporal areas of the brain. FTD (frontotemporal degeneration) is a rare disease more commonly found in those younger than sixty years of age.

The progression of LATE is slower than Alzheimer’s disease. When LATE and Alzheimer’s disease are both present, the disease progresses more rapidly than either disease does alone.
The information from this study came from brain autopsy reports. We had an autopsy on Jim’s brain for the simple reason that I wanted to know what disease he had and whether it was hereditary. Of several terms used in his autopsy, I recognized a few: neurodegenerative disorder, incidental Lewy body, frontotemporal atrophy, swollen neurons, and tau positive glial inclusions. The cover letter said that Jim showed no signs of Alzheimer’s. He had corticobasal degeneration, a rare (non-hereditary) disease, and one I had never heard of.

Treatments targeting beta amyloid plaques would not be effective in a disease that does not have the plaques. Rare diseases do not have the funding of diseases that are more common. Funding Alzheimer’s research is our greatest hope of finding effective treatment for other types of dementia.


Copyright © June 2019 by L.S. Fisher

Tuesday, May 28, 2019

One of These Things

When I first started elementary school, our workbook had pictures of objects, and the assignment was to choose the one that was different and did not belong. We would color the pictures and circle the one that wasn’t the same. Later, Sesame Street brought the fun to TV with a song of encouragement. Now, almost daily, I see a screen of numbers or letters and the caption, “It will take a genius…” to figure out, for example, which one of the numbers is an 8 instead of a 9. I’m thinking it doesn’t take a genius to know that you are not a genius just because you spot the one that is different.

I’ve seen two things in the last week that stood out from the norm and were obviously different. First, I was walking the dog one night and heard a rumbling sound as we walked down the driveway that I couldn’t identify. Even the dog was looking around to see what it was. I looked up at the bright twinkling stars and clear sky and couldn’t see anything that would be making the noise.

I walked the dog up the driveway, turned around, and headed back toward the highway. All of a sudden, a low hanging cloud moved swiftly across the sky. The odd shaped cloud barely cleared the apple tree in our yard. At first I thought it was smoke, but I couldn’t smell it and there seemed to be no origin. To be honest, it looked creepy and when I turned my back on it to head toward the house, I felt prickles run across my scalp and had the feeling someone was watching me.

The next odd thing I saw was at the Veterans Cemetery when my son, sister-in-law, and I took flowers to place in front of Jim’s niche. After we placed the flowers, we enjoyed the peaceful beauty of the cemetery. Rob and I walked away from the columbarium toward the headstones. There, not too far from the road, but several feet from the graves, was a vase of artificial flowers with a partially deflated helium balloon attached. It was stuck in the ground and looked pretty much like a fancy lawn dart. We speculated as to why the floral arrangement was in such an odd place. They weren’t the same as all the other flowers placed on the graves.

We sometimes see an anomaly among our fellow human beings. Some people are just different from the others. Since we are all unique, a certain amount of difference is expected.

Jim was one of those rare individuals who marched to his own drum, and did not believe in blindly following the norm. His ideas and beliefs were often delightfully imaginative, and at the same time, his stubbornness could be maddening.

Life can become so mundane and routine that we tend to expect sameness and may not notice when things are unusual. Still, the day Jim forgot his social security number and birth date was the day I realized something was different and that nothing would ever be the same. Later, I tried to remember other clues that indicated  the horrible disease that was just beginning to unfold. I couldn’t think of anything that seemed to be outside the norm. Once alerted,  I began to notice glitches in his thinking, his abilities, and his personality. The differences seemed to snowball, steadily going downhill and picking up speed.

It was nearly a year before others began to notice Jim’s problems. Up until then, I think they thought I was exaggerating, or that I was the one with a problem.

Yes, we often see things that are different, but instead of really noticing them, they blend in with the minutiae of everyday life. Some differences that come out of a clear blue sky, or are stuck into a grassy knoll, make no impact on the grand scheme of things. But differences that occur in the 100 billion brain cells of someone you love are life changing.

Copyright © May 2019 by L.S. Fisher

Friday, May 17, 2019

Life Is...

I just went on a nine-day vacation with my mom and sisters—our Girls Trip 2019. We had a relaxing time in both the mountains and on the beach. Nine days without thinking about obligations brings to mind that…

Life Is Good: In Savannah, GA, we took a trolley tour of old Savannah. Our one stop was at the Riverwalk. We ate lunch at the Shrimp Factory and visited a couple of shops. One of them, Fannie’s Your Aunt, offered Life Is Good t-shirts. I found two that caught my eye and both had to do with music. Since I’ve joined the Capps Family Band, I practice my songs while I walk the dog. Did you know that singing lowers stress and helps with mental health? Singing also boosts memory.

Life Is Exasperating: Back home, life settled into the normal routine. Get up, take the dog out, fix breakfast, clean up, etc., etc. Most of all, I spent hours and hours trying to catch up on all the work I skipped out on while enjoying my vacation. Isn’t that the downside of vacation? I’ve never had those little elves come in and do my work while I’m out of town.

Life Is Predictable: I can’t help but notice that life is predictable. I can always count on the predictability of a normal day. The sun comes up every morning in the east and sets in the west. It rains from time-to-time, usually when we need to do outside work, and the grass grows faster than we can cut it. This was going to be the year we kept ahead of it—until it rained and rained and rained. We can’t mow our lawn when the yard has the squishiness of a rice paddy.

Life Is Scary: It’s hard to go through a very long period without a heart-stopping close call on the highway. There’s nothing quite as fun as topping a hill and seeing cars headed your way in both lanes. Even in the safety of my home, I’ve had a few scares—one as recently as this morning. I was cooking breakfast and sipping my coffee while I watched the sausage brown. Normal early morning…until…I realized the kitchen was filling up with smoke. I turned around and smoke billowed from beneath the cabinets and along the countertop. I opened cabinet doors although I couldn’t figure out how a fire could start in the cabinets.

“Harold, Harold!” I yelled. “There’s smoke everywhere and I can’t figure out where it’s coming from!” He came into the kitchen, looked around, calmly, which by-the-way was totally irritating when I was in a panic. He reached over and unplugged the toaster where our normally pale toast that has to be pushed down twice was completely charred.

Life Is Mysterious: I could regale you with stories of mysterious events in my life, but that would be a book of its own. Just this week, I was washing dishes and began to sing “Que Sera Sera,” which to be honest, I hadn’t even thought of in years. The next day, Doris Day passed away. Just a little odd, I thought. Last night, Harold was watching an old Law and Order rerun on the TV in the bedroom, and I decided to catch up on the pile of newspapers I hadn’t read. I sat down on the couch in our kitchen and picked up a random newspaper. An article about the measles caught my eye. As I began to read, I could hear the medical examiner on the TV program “testifying” about how a child had died from the measles. As I read the next two lines, I was reading the words she was using to testify. That was mysterious and a little bit creepy.

Life Is Not Fair: I always try to be fair, but there isn’t too much fair about life. Good people have terrible things happen to them and bad people have prosperity and lead charmed lives. That’s just the way it goes. Jim was a good person and certainly did not deserve to have a horrible disease that robbed him of his most precious memories.

Life Is Attitude: How you look at life determines how life looks at you. If you see the negative, the negative consumes you. If you see the positive and spiritual uplifting side of life, it returns the favor. Life is good if you allow it to be.

Copyright © May 2019 by L.S. Fisher

Sunday, April 28, 2019

The Road Less Traveled

A group of my former classmates and I are planning our fifty year class reunion. Several have brought in photos taken on our senior trip to the Smoky Mountains. As they look at the tiny, blurry photos and reminisce, I realize how little I remember about the trip. I remembered the Grand Ole Opry. I remembered the towns of Gatlinburg and Chattanooga, Tennessee. I remembered traveling to the top of the mountain in a cable car. But as far as the shenanigans—the fake gun fight, the bathroom window on the bus falling out, a group going out looking for a place to bowl and getting stopped by the local police—I have zero recollection.

“I know I wasn’t drunk, so I don’t know why I can’t remember all the things you remember,” I said to the group.

“I can’t remember much about it either,” Cindy admitted.

Maybe the reason the memory of the senior trip faded so quickly for me was because Jim and I traveled so much. We always went west, but once in a while I would suggest the Smoky Mountains, but it just didn’t work into our plans.

Now, oddly enough, on close to the fiftieth anniversary of the senior trip, we will be taking our girls’ trip to South Carolina. On the way, we will be going through the Smoky Mountains. For me, this is an area I haven’t been to in half a century. It seems just a little odd that I went to a meeting with the planning committee and drove a few blocks to my mom’s house to plan a trip to the same area.

One thing I’m sure of—a lot will have changed in fifty years. If nothing else, I have changed. I can’t help but wonder if I’ll visit certain sites that will bring about a feeling of déjà vu. Will the places call forth events stored in locked parts of my brain? Will I feel sadness for those in the class of ’69 who now reside in eternity and not with us?

I have heard that some of my former classmates have memory problems. I don’t know that anyone has been diagnosed with dementia, but then not everyone receives a diagnosis. According to the statistics, one in ten of us will develop Alzheimer’s in our lifetimes. We have already reached the age of vulnerability, and are too old for younger onset dementia.

It’s a little bit concerning that I can’t remember much at all about the senior trip, but it would be devastating to not know the people I love. Recently, I’ve visited with two men who held an important role in my life. One looked at me and said, “I don’t know who you are.” So, I told him who I was. The other gave me a hug, but never talked or showed any recognition in his eyes. You have to hate a disease that does that to people you love.

Although it made me sad, I didn’t regret seeing either of them. One, I was told, was just having a bad day. The other, I was told, can’t remember anything anymore. His family is just spending time with him and helping him enjoy life as much as they can.

Unfortunately, the road less traveled is often the one that leads to special care units in nursing homes. Excuses abound, but sometimes people just don’t have the fortitude to give unconditional love to those who no longer seem to even know who they are.

In the end, when they can’t remember you, you still remember them. If the person you are hesitating to visit played a major role in your life, you are cheating yourself. If you don’t share hugs, words of love, and bring a smile to someone’s face, you are the big loser.

Travel that road. Take the time to hold fast to the memories that linger in your heart. Life has robbed a person with dementia of their memories, and he lives only in the moment. The more moments you share with your loved one, the more happiness you bring into his life, and yours. As we travel through life, we need to enjoy the journey before we reach the final destination.  

Copyright © April 2019 by L.S. Fisher

Thursday, April 18, 2019

Cruel April

Some dates are seared into our memories and leave scars on our hearts. For me, that date is April 18, 2005.

When I flipped my calendar to April, I didn’t think of flowers, thunderstorms, morel mushrooms, or even mowing the grass. I mentally, went back in time and remembered that April was the cruel month…when the beginning melded into the end. The good guy lost, and the relentless disease won.

I’d been so busy this month that it didn’t seem possible that today was already the eighteenth day of the month. The month began in Washington DC at the Alzheimer’s Forum. Then, there was the catching up to do with all the projects I’d put on hold to take time away, including the annual scourge known as taxes.

Today, the eighteenth of April, was a busy day. At nine o’clock this morning, I drove to Versailles for a 50-year class reunion committee meeting. Reconnecting with my former classmates has been a positive experience. As usual, when our work was done, we went to lunch.

After lunch, I picked up my mom and my aunt to go to the nursing home for our monthly music gig. We began set up at 2:00, and began our hour-long program at 2:30. One of my former classmates had brought some scanned photos for the reunion book and stayed to watch the program. “This is a lot of talent in one family,” she said.

My mom and I had a short visit over a cup of coffee, and then I headed home. The sun was setting in the west by the time I pulled into the garage. The day was almost done. The black aura lifted some as the day dwindled down.

Tonight, I put the leash on the dog, slipped on my coat, and stepped out into the darkness. The clouds parted and the moon slid into view. 

As often happens in the still of the night I was left with my thoughts and memories. The sorrow seeped into the fiber of my being, and hid beneath the surface. I thought about how Jim had always been a part of my life, and always would be. I remembered how Jim, a man of faith, told me that death was merely closing one door and opening another.

A cold breeze sent shivers through my body. It was as if he had whispered to my heart: the end has melded into the beginning, and the good guy won after all.

Copyright © April 2019 by L.S. Fisher

Wednesday, April 17, 2019

Cherry Blossoms and Soaring Kites

My trip to the Alzheimer’s Forum this year coincided with the Cherry Blossom Festival and the Blossom Kite Festival. It so happened that when my traveling buddy Jennifer and I ventured out, we ran into human traffic jams every step of the way. It was a little claustrophobic at times, especially when we were stuck at the metro exit behind a crowd of slow moving people.

Capitol Hill didn’t seem quite as congested as usual this year and for the most part the security lines moved and a decent pace. It helped that we weren’t rushed between our appointments.

After our forum training and updates on all things Alzheimer’s, we were prepared to speak of Alzheimer’s as the public health crisis it has become. We had four asks for our legislators:

1)      Increase Alzheimer’s research funding at the National Institutes of Health (NIH) by $350 million for fiscal year 2020. Currently, 5.8 million Americans are living with Alzheimer’s disease. Without a medical breakthrough, that number will triple in a generation!
2)      Support $20 million in fiscal year 2020 to implement the BOLD Infrastructure for Alzheimer’s Act at the Centers for Disease Control and Prevention (CDC). Bold will establish Alzheimer’s and Related Dementias Public Health Centers of Excellence, fund public health departments, and increase data analysis and timely reporting.
3)      Co-sponsor the Improving HOPE for Alzheimer’s Act (S. 880/H.R. 1873. In 2017, only 1% of seniors living with Alzheimer’s received the Medicare care planning benefit. We must educate providers and individuals with dementia about available care planning services.
4)      Co-sponsor the Younger-Onset Alzheimer’s Disease Act (S. 901/HR 1903). This would allow individuals with younger-onset dementia to receive services provided under the Older Americans Act, currently available only to Americans over the age of 60.

Our first visit of the day was with Senator Blunt who has become a champion for Alzheimer’s. He greeted us, began to speak of the tremendous cost of Alzheimer’s, and compared it to the defense budget.

Next, the Missouri delegation attended the Senate Hearing on Alzheimer’s disease. In his remarks, Senator Hawley recognized our fellow advocate Lonni Schicker and briefly told about her younger-onset diagnosis. After the hearing, we visited his office.

My last meeting of the day was with Congresswoman Vicky Hartzler’s office. I only met with her briefly since she had to go to the floor for a vote. We finished our visit with her senior legislative assistant, Bryan McVae.

After speaking to our legislators, we came away with the feeling that we are in this battle together. This is different from when we used to have to spend all our time convincing them that Alzheimer’s affects all of us in one way or another. Our hopes are flying as high as a Blossom Festival kite that by working together, we can and will find a cure.
For the past few years, I’ve stayed an extra night to avoid the nail biting rush to the airport. I’d much rather be way early than just a few minutes too late to catch a flight home. At the airport, we came across some fellow advocates for a “selfie.” Then, we disbursed to our separate homes to continue the fight to end Alzheimer’s.

Copyright © April 2019 by L.S. Fisher

Sunday, March 31, 2019

See Al? Be Like Al

I'm in Washington DC for my 19th Alzheimer's Forum. You would think after 19 times, it would be the same-old, same-old, but you would be wrong.

Here it is almost April, and we had April Fool's a few days early. After a short warm snap, Jennifer and I had no more gotten to the airport that snow began to fall. We were flying Southwest so we had no assigned seats, but Jennifer's mascot elephant, Al, held my seat for me until I boarded the plane. A disembodied voice from the cockpit ask us to be patient while they de-iced the plane.

I was curious since I had never been on a plane that had to be de-iced. Pretty soon, a cart pulled up, with a bold sign letting us know that "The Ice Man" was on the job. A ten-second squirt and we were off and running.

After grabbing our two purple suitcases off the carousel, Jennifer and I embarked on the second new experience of the day. I've always caught a cab to the hotel, but Jennifer had an account, and we were to be picked up by a white Toyota by a Lyft driver named Olga.

We were both excited to be in DC on a pleasant, sun shiny day and didn't mind waiting a few minutes for Olga to arrive. Jennifer was in contact with her and she assured us she was nearby. As we stood there viewing the screen, a young man standing nearby said, "Are you Jennifer?"

We found out it was his first attempt with Lyft, but he was sharing a ride with us. Jared was going to a different hotel. They both received notification that Olga had arrived and she was in a blue Camry. We spotted her and loaded up. Lucky for us, all Jared had was a backpack because the truck was full of purple.

Al was in the trunk in the carry on. We should have kept him as a navigator. Olga told us it was her first day with Lyft after working with Uber for six years. So, here we were, a car full of newbies heading into DC proper looking for not one, but two hotel. Jared was closer so the navigation system was set up to let him off first. Olga took off headed in the direction of the nav, and I could almost hear Al screaming in the trunk, "I don't think she knows where she's going!"

After we had made several exits, it looked to me like we were closer our hotel located near the zoo that a hotel close to the White House. After all, I'd been on several harrowing taxi drives to the same hotel.

Jared pulled up navigation on his phone. "We're pretty close to our hotel," I said from the back seat. I pulled up my own map. It said we were within six minutes of our hotel.

Olga made a U-turn and headed back across the bridge we had just crossed. Jared tried to be helpful, but she still missed an exit or two, narrowly missed crashing into a car that cut in front of us. Thankfully, her car had great brakes!

"We are getting a nice tour of the city," I remarked.

Finally, after about forty minutes, we found Jared's hotel. By then, my phone had "re-routed" several times and Olga was headed in the right direction. Her phone kept telling her to drop Jared off instead of telling her how to get to our hotel. Eventually, her navigation and mine agreed. I saw the landmarks I was used to seeing including Marilyn Monroe's face on a building. "We are close," I told Olga. I saw the Omni Shoreham where we'll be staying the last night. I saw CVS, familiar restaurants. "This is our neighborhood," I told Jennifer.

Olga zigged when she should have zagged. "Here it is," she said. It was the back entrance. "All you need to do is go around the block and you can let us off in the front," I said. She took off, flew past the front entrance. Oops. I finally saw a side entrance we often used. "Here," I said. "Let us off here."

"Are you sure?" she asked. "I don't think this is the right hotel." Well, the name was right above the door.

When we got to our room and unpacked Al, he had a smug look on his face.

We immediately took off to look at the monuments, cherry blossoms, and the kite flying. As we rushed off to get caught up in the humongous crowds, Al stayed behind in the room patiently waiting for us to attend to the business we came to DC to accomplish.

He wears his purple beads, his AIM (Alzheimer's Impact Movement) pin, and his Walk to End Alzheimer's Team Captain button. Al is ready and waiting.

Be patient, Al. In a few hours, we will be all business and determination. We will be like Al and fight to #ENDALZ.

Saturday, March 23, 2019

Ring of Fire

A few days ago, I was listening to some songs on my Kindle in an attempt to find something to sing with the Capps Family Band at our nursing home gigs. I listened to Patsy Cline, Emmylou Harris, Ray Price, Jim Reeves…and the list goes on. Eventually, I went out of YouTube and decided to go to bed.

After I was ready for bed, I woke up my Kindle and clicked on the Book tab. I heard the intro to the Johnny Cash version of “Ring of Fire” with its unmistakable mariachi horns. The music stopped when I opened the book I’d been reading. The book? Ring of Fire by Brad Taylor.

Some might call that a coincidence, but my goose bumps classified the experience as more “weird” than “coincidental.” It seemed it was a message of some kind, but I didn’t have a clue as to what it could possibly mean.

So if we think of love circled with a fiery ring, I believe you could say that nothing could penetrate that ring to destroy the all-consuming love within its circle. However you look at it, fire in the song is symbolic. Fire has many symbolic meanings, and I found the one that could mean something to me: Issues you are consumed by—a strong passion or prolonged obsession. Regardless of that stalker-esque phrase, I choose to relate it to my passion for being an Alzheimer’s advocate.

I contacted the Alzheimer’s Association soon after Jim was diagnosed with an Alzheimer’s type of dementia. They connected me to a support group. Both the local chapter and the national Alzheimer’s Association sent newsletters. Through the newsletters, I learned about a walk in our hometown known then as the “Memory Walk.” Jim and I registered for the walk and on walk day discovered we were the only ones from our town. The next year, I became an Alzheimer’s volunteer and coordinated the walk.

When my daughter-in-law and I tried to get corporate sponsors, we realized that people didn’t know much about Alzheimer’s. They often referred to it as “old timers” disease. They thought age caused it and it just happened to elderly people. No big deal—just a part of growing old. The first priority was to educate them that Alzheimer’s was a degenerative brain disease.

I went to Washington, DC, for the Alzheimer’s Forum for the first time in 2001. By then, Jim had been in long-term care for a year. We went to ask for $1 billion for Alzheimer’s research and for legislation to help the families dealing with Alzheimer’s. It didn’t take long for me to find out that most senators and representatives didn’t know much more about Alzheimer’s disease than the folks back home. After much persuasive talk, we got a tiny fraction of our lofty goal. This pattern was repeated year after year. Sometimes we gained a small amount, other times we held steady, but a few times our funding was decreased.

A lot of things have changed since my first trip to DC. As I look forward to my 19th trip next week, I know we will meet with legislators who know exactly what Alzheimer’s is and how devastating it is to the families and to our government. Our senators and representatives are important partners in the fight to end Alzheimer’s.

Yes, we’ve won many battles, but now we need to win the war. Current research funding for Alzheimer’s is beyond our wildest dreams of nineteen years ago. The National Alzheimer’s Plan was passed in 2012 to find an effective treatment or cure by 2025. It seemed like we had plenty of time to meet our goals, but time has gone by with promising treatments falling short of the target.

We must fund successful research and break through the ring of fire that separates Alzheimer’s disease from a cure. In the meantime, we need to surround caregivers and persons with dementia within a circle of love and caring.

Before Johnny Cash recorded “Ring of Fire,” he had a dream of the mariachi horns. He made his dream come true by taking action. Well, I have dreams too, and I plan to take action at the Alzheimer’s Advocacy Forum on April 2.

Copyright © March 2019 by L.S. Fisher

Monday, March 11, 2019

As Time Goes By

Well, yesterday we made the big switch to Daylight Saving Time. At my age, any change isn’t easy, and I sure miss that hour.

It seems as if time goes by quicker each day. I only have my Christmas decorations as far as the landing, waiting to go into their storage boxes. My snowmen are still sitting on the ledge although, gee, it hasn’t snowed in a week. Our first almost-spring rain melted the last of the snow in the yard as long ago as yesterday. Where has the time gone? St. Patty’s day is less than a week away and Easter is on the horizon.

I believe that it is the busyness of life that hides more hours than the one we lost between Saturday and Sunday. Juggling several projects at one time means I’m constantly putting out fires. Sometimes, I make progress and feel like I’m attacking the fires with a high-pressure fire department hose. More often than not, I look at the growing to-do list and might as well be beating back the flames with a gunnysack, and one that isn’t even wet.

Where has the time gone? I look at the year 2019 and realize how vividly I can remember events of fifty years ago. This is the year of a golden anniversary that will never happen. Jim’s life was cut short by an Alzheimer’s type of dementia—a disease I had never heard of—corticobasal ganglionic degeneration.

CBGD is a rare disease that attacks the cerebral cortex and the basal ganglia in the brain. The onset usually occurs between the ages of 45 and 70 with an average duration of six or seven years. After he looked at Jim’s autopsy report, his neurologist explained that CBGD is a movement disorder. Initial symptoms are usually difficulty walking because of stiffness, shakiness, or balance problems. This is usually followed with problems with speech and comprehension.

For some reason, Jim’s earliest noticeable symptoms were with memory and speech. Early in the disease, he developed aphasia from the damage to his brain. He had trouble speaking and understanding words. Jim also had alien limb syndrome, especially in his right hand. He had to have his little finger amputated due to infection cased from clinching the hand he forgot how to use. He also had ideomotor apraxia (IMA) that resulted in his feet appearing to stick to the floor causing him to lose his balance.

I was relieved to learn that CBGD is almost always sporadic and not inherited. A variant in the tau gene is associated with a predisposition to CBGD, meaning it can occur more often in some families. However, not all people with CBGD have the tau gene variant, and not all people with the variant develop CBGD.
Jim passed away in 2005 after ten years of living with CBGD. Next month marks the fourteenth year anniversary of his death. Where did the years go? Sometimes, it seems a different lifetime, a different me. Other times, it takes my breath away as the realization that he is forever gone batters my heart anew. The pain is physical in those moments and I can almost feel life slipping away.

How did seconds turn into minutes, and minutes into hours? How did twenty-four of those hours turn into days? How did the days turn into years? How many years will you and I have in a lifetime? The questions remain the same, but the answers are the biggest mystery of all.

Copyright © March 2019 by L.S. Fisher

Sunday, March 3, 2019

Memory Day 2019

The typical Missouri weather forecast called for a possibility of ice on Memory Day. The night before, Jessica and I held a text discussion trying to decide how early we had to leave to make it to the Capitol on time. To complicate things, the Capitol Building was undergoing renovations and only one entrance was open.

My husband watched me busily texting, as I told him the various times under consideration. “Well, we decided to leave at 8:00,” I said.

After I put the phone down, he asked, “Where are you meeting?”

“Well, since we didn’t decide anything different, I assume we will meet at the same place we meet every year.”

About that time, Jessica sent another message. “We didn’t decide where we were meeting.”

After all our weather worries, the ice stayed away, and we had an uneventful trip to the Capitol. Soon we met with other purple clad advocates. We made new friends and reunited with advocates we had met previously. Several hugs later, we split up into teams to visit our senators and representatives. Jessica, Mark, Samantha, and I donned our purple sashes, put on our figurative advocacy hats, and set off to keep our appointments.

We had two asks this year: Fund Alzheimer’s Grants for Respite and Pass the Structured Family Caregiver Act. It was easy for me to support both bills wholeheartedly.

Every caregiver needs time away to refresh and rejuvenate. The state of Missouri has awarded $450,000 in Alzheimer’s Grants for respite for several years in the past, and we asked for the same amount again. Of the Missourians receiving respite funds, 99% report they can keep their loved one at home longer. By delaying nursing home placement by a mere two months, the state could save $2 million in Medicaid costs. What a deal!

We also asked our legislators to pass the Structured Family Caregiver Act. This pilot program offers a new option under Medicaid for full-time caregivers. The caregiver would have the support of an in-home agency that would provide professional support. The family would receive care planning, training, remote monitoring, and monthly visits. The caregiver would receive a daily stipend to help relieve financial hardship. The goal of this program is to keep persons with Alzheimer’s and related dementia at home rather than in nursing homes. The cost to the state would be about half the cost of a long-term care facility.

Alzheimer’s is the most expensive disease in America for both the government and the families who care for loved ones with the disease. The cost of incontinent supplies alone would strain the budget of a Medicaid eligible household. Imagine the plight of a low-income family dealing with a high cost disease.

At the end of our visits, we attended the Memory Day Ceremony in the Rotunda. Governor Parson talked about his personal experience with Alzheimer’s and pledged his support. Advocate Terri Walker spoke about receiving her diagnosis on her grandson’s birthday. Her well-spoken words had the power to touch our hearts. Her youth, sparkling eyes, fabulous haircut, and lovely purple dress served well to strip away any preconceived stereotypes of the face of Alzheimer’s.  

Families dealing with Alzheimer’s need our support, our hugs, and our advocacy. Until we find a cure for Alzheimer’s, I will continue to join other committed advocates at the Missouri Capitol and on Capitol Hill in Washington, D.C.

Copyright © March 2019 by L.S. Fisher