Friday, June 23, 2017

We Are Not Alone

When I walk my dog late at night, I always look at the sky. I’ve seen several mysterious lights. Some of them suddenly zoom across the sky, others disappear. What are those strange flying objects? Okay, a disclaimer—I do live close to Whiteman Air Force Base, and they do have some planes that look like they belong in a sci-fi movie.

According to an article I read in the newspaper recently, NASA is on a planet hunting mission. They have determined that ten new planets exist that have the potential to support life. They are in a galaxy far, far away, but the possibility exists that beings may be trying to contact us.

How many people believe our planet has been visited by “men in black” is somewhere between 25% and 45%, depending on the source. So, if you’ve seen something inexplicable, you are not alone.

Other than visitors from other worlds, we may sometimes feel alone. It seems we can live “down the road” from a close relative and seldom see them. We live in a world where many of us do not know our neighbors. We tend to go about our business and mind our own business.

When I was growing up, it would have seemed sci-fi to believe that someday we the entire world would be a few keystrokes away. Who could have foreseen twenty-four hour TV, or so many channels that we never watch them all?

Still, in the world of connectivity, some of us feel alone. I believe many Alzheimer’s caregivers feel the loneliest of all. In fact, caregivers may feel like their world has turned upside down, and they have landed in a strange and foreign land.

We each have our own road to travel; our own frontiers to conquer. We never know how strong we can be until we face an unconquerable challenge. For me, that challenge was Jim’s dementia. For others it may be cancer, or heart disease, or the sudden death of a loved one. We never know what the next day, or for that matter, the next hour, will bring.

Earth is our home for a certain time. We have only a finite number of years to gaze at the stars, fall in love, have children, and visit with our loved ones who may live down the road or across country. We have things to do—so many things to do—and a short time to do them.

When I walk the dog and look at the heavens, sometimes I feel a chill, or an unexplainable ache. I see many things at night, and sometimes during the day.

One day earlier this week while the dog and I were meandering across the backyard, I looked up at a blue sky with a few scattered fluffy clouds. I saw a strange, rectangular white object passing rapidly by.

“Do you see that?” I yelled at Harold. Of course, he didn’t hear me. Just as I marveled at that object, I saw another. In a few minutes, they were gone.

I told Harold what I’d seen, and he said, “Probably a weather balloon.” Just like my dad, he thinks every strange flying object is a weather balloon.

“What I saw was flat. Didn’t look like any kind of balloon.”

Oh, well, there’s no way of really knowing what the strange flying objects were. They could have been something from Whiteman AFB, a runaway pair of drones, sheets off a line that decided to go for a thrill ride, or maybe a deflated weather balloon.

Since the objects were unknown, I like to think they might have been a couple of angels making their way toward the heavens. Maybe, I was the only one looking up during that brief moment of visibility. At least there were two of them, so neither was traveling alone.

Copyright © June 2017 by L.S. Fisher
http://earlyonset.blogspot.com

Friday, June 16, 2017

Silence, Please

My granddaughter was in a production of Dancing to Never Land, and I drove to Jefferson City to watch. As we were waiting for the program to begin, I remembered to silence my phone. While we patiently waited for her part, I took photos with my spanking new camera to make sure I could get quality photos.

An hour-and-a half into the program, my phone began to play a happy tune. What? How could that be? Of course, it didn’t play its tune during a set change or when the music was loud—oh, no, it was during a quiet time. Then, it dawned on me—it was my sunset alarm. Since we’ve been closing the blinds in the evenings, I don’t have my bird’s eye view of the setting sun, so I set an alarm to remind me to look. Turning off the ringer and media sound does not silence the alarm.

Last Sunday I heard a phone ringing during the pastor’s message. It rang, and rang, and rang. I don’t know if the person was deaf, ignoring the ring, or not wanting to call attention to himself by pulling out the phone.

Maybe they thought it was someone else’s phone. That happened to me once many years ago during an Alzheimer’s Board Meeting with my first cell phone. I could hear a phone ringing and thought, “How rude!” Except, when I reached my car I saw I had missed several phone calls. My son wanted me to know that we were under a tornado warning. He didn’t know I was in a different town at a meeting.

Then, there’s always the talker that won’t stop when a prayer begins. They are way too involved in a conversation to notice everyone has fallen into silence. How annoying that all you can hear is their conversation instead of the prayer.

When some people are alone, they have to fill their home with noise—the TV, radio, or some other racket—but I always loved the quiet. I’ve never found anything more soothing than the sound of silence, or the quiet sounds of a country night.

I’m not the only one who reveres silence. Others have provided poetic and practical observations about silence:  silence is golden, listen to silence—it has much to say, speak only if it improves the silence, silence speaks louder than words, silence says it all…

I saw a TED talk on noise. Julian Treasure said that most noise in our lives is accidental and unpleasant. Noise affects us physiologically, psychologically, cognitively, and behaviorally.
Silence or soothing noises can improve productivity and improve mood.

After leaving a party where dozens of conversations are going at once, walking out of a noisy restaurant, or shutting off a too-loud TV, I retreat into my favorite environment of stillness and relaxation. My mind thinks, “What a relief!” I’m in my element when all I can hear are the blessed sounds of silence.

Copyright © June 2017 by L.S. Fisher


Wednesday, June 7, 2017

Go Purple in June

I was at the grocery store a few days ago and the woman at the checkout asked me if I liked purple. Now, how did she know that? Well, let’s see—purple Alzheimer’s shirt, purple bracelet, purple nails, purple shoes, purple purse…

“Yes, I do,” I said. “Purple is the Alzheimer’s color and I plan to wear purple every day in June for Alzheimer’s and Brain Awareness Month.”

Tuesday was a complete Go Purple day for me. Not only did I wear purple, I spent the day with Paige from the Greater Missouri Chapter on Alzheimer’s related activities. First, we taped shows on two different radio stations, we contacted several businesses about teams and corporate sponsors, and we found a venue for an August program and care consultation. The day went really well and I found the enthusiasm and support to be a refreshing change.

The Alzheimer’s Association has a one-day event called the Longest Day. Of course, the longest day of the year is in June and this year, the fundraiser is celebrated on June 21. The Longest Day is about love for those affected by Alzheimer’s disease. People do an activity they love—playing games, exercising, sports, hobbies—and while they enjoy their activity, they raise funds for the Alzheimer’s Association.

The Longest Day is a perfect fit for the Alzheimer’s Association. Caregivers can attest to the intensity and length of each caregiving day. The most well-known family guide about Alzheimer’s and related dementia caregiving is called the 36-Hour Day for a reason. Any Alzheimer’s caregiver can tell you why.

By June, I’m always working on the Alzheimer’s Walk and have never fully participated in a Longest Day team. I believe this would be a great opportunity for someone who isn’t involved in the Walk to End Alzheimer’s , but wants to help support the Alzheimer’s programs.

Of course, I’d encourage everyone to participate in the Walk to End Alzheimer’s. We are always pleasantly surprised to see people we weren’t expecting show up on walk day.

Our walk committee has been small for several years. The same core group has faithfully taken on the task of making the walk a well-attended community event. As it gets closer to walk time, we hope to grow our committee. Many hands make light work. We’ve always been fortunate to have event day volunteers, but fresh ideas and new perspectives are always welcome. We want our walk to be better each year!

I hope you get a chance to participate in the Longest Day or a Walk to End Alzheimer’s no matter where you live. You can go to act.alz.org to find information about the Longest Day and/or find a walk near you. You can help in many ways—you can volunteer for the committee, start a team, join a team, support a team, or show up on walk day, make a donation, and enjoy.

In the meantime, remember to Go Purple! When someone asks you if you like the color purple, it is your opening to create awareness for the five million in the United States who have Alzheimer’s and the fifteen million family caregivers.

Copyright © June 2017 by L.S. Fisher

Saturday, May 27, 2017

Decoration Day


In case I’d forgotten this was Memorial Day weekend, I was reminded by the bumper-to-bumper traffic in town yesterday. Our town sets between Kansas City and the Lake of the Ozarks so every summer weekend we are in the cross-hairs of tourists. Memorial Day and Labor Day turn Limit and Broadway into parking lots.

I don’t suppose most of those people are headed to cemeteries to decorate graves of loved ones. Decoration Day was established to honor Americans who died in wars, but has evolved into a weekend of fun in the sun and store-wide “Memorial Day Sales!” Yep. The way to honor those who made the ultimate sacrifice is to celebrate and buy bargains. Memorial Day is most definitely a red-white-and-blue day right down to sales ads for clothing, hardware, lawn furniture, and every other consumerist purchase possible.

I remember when as a working person, Memorial Day was the first official holiday of the year. I admit that after our annual run to place flowers on the graves of loved ones, we spent the rest of the weekend pursuing some sort of fun activity.

Now, the highlight of Memorial Day is to attend the ceremony at the Veterans Cemetery in Higginsville and place flowers for Jim in front of the columbarium. Many of the graves at the cemetery hold the bodies or ashes of those who died fighting for this country. Others, like Jim, didn’t die in the war, but as one veteran said at a Vietnam program, “I died in Vietnam; I just didn’t know it.”

That’s what happened to Jim. Taking human life stole part of his soul and left it lying in the jungle beside the fallen. His life was never the same after he saw the lifeless bodies taken down by his M16. Jim had PTSD before we knew it even existed. When dementia faded his short-term memories, Vietnam clamored to the forefront of his mind.

Did you know that 3:00 p.m. local time is set aside on Memorial Day as a national moment of remembrance? At the appointed time on Monday, pause, remove your ball cap, and bow your head for the 1.1 million American soldiers who have died for this country.

Maybe a fun-filled weekend is the way to honor those who made the ultimate sacrifice to keep this country free. It’s a time to think about what is right about our country instead of what is wrong. This patriotic weekend is a time of remembrance. The most important thing we should remember is that our freedom wasn’t free.  

Copyright © May 2017 by L.S. Fisher

Friday, May 26, 2017

The Benefit of Laughter

Linda at Roast
The 2017 Greater Missouri Alzheimer’s Association’s roast was a roaring success. I can’t help but think a person must be quite comfortable in his skin to allow a group of people to “roast” him. Or as the emcee, Bob Pugh put it, “sear him” on first one side, then the other, before roasting him to well done.

I was assigned a seat at the “Hawk” table along with my new friend, Kathleen. We were glad to see each other since we were the first two at the table, and both of us wondered if we’d be seated by anyone.

“Are you a Hawk?” she asked me.

“No,” I admitted.

We wondered what a “Hawk” was. “Well, if they don’t show up, we can eat their desserts,” she said. We were joined by a charming gentleman who said he was not a Hawk, but eventually, the Hawks joined us—a husband and wife team. Everyone else at the table personally knew the roastee, Mark Fenner, CEO of MFA Oil, which made the experience even better for me.

Mark and the roasters looked quite dashing in their purple tuxedos. The evening was filled with good-natured ribbing, including Mark teasing a donor for selling a $10 million business, but donating “only” $25,000. The roast was topped off with a guitar and a sing-a-long.

Laughter as a benefit correlates to the benefits of laughter. I can’t think of many people who need laughter more than caregivers. The health benefits of a good chuckle cannot be taken lightly. According to Mayo, laughter is the ideal stress buster.

A good laugh can:

·         Lightens your load mentally. Laughter relaxes you, and reduces your stress hormone levels, and releases neuropeptides to fight stress.
·         Eases physical pain. Laughter triggers the release of endorphins, nature’s feel good chemical.
·         Improves cardiac health. The American Heart Association believes humor can help your heart by reducing artery inflammation and increasing HDL cholesterol. We have good and bad cholesterol. The easy way to remember which is which is “H”DL is the “happy” cholesterol and “L”DL is the “lousy” cholesterol.  

Laughter is good for body and spirit. It gives you short-term and long-term benefits. Having a good laugh every twenty-four hours is just what the doctor ordered!

I easily stored up a week’s worth of laughter at the roast. It was good to spend an evening with long-term friends I’ve met over the years, and with new friends I met for the first time at the roast.

I can’t think of a better fundraiser than one that is fun. Beneath the laughter was the serious business of raising money to provide our chapter’s outreach and to laugh our way to a world without Alzheimer’s.

Copyright © May 2017 by L.S. Fisher

Thursday, May 18, 2017

The Trip You Don’t Want to Take

I was carrying my Mother’s day potted dahlia up the deck steps when I tripped on the steps and fell. I smacked my elbow, knee, and scraped my foot.

It was a little shocking to find myself down, but I dusted myself off, moved my limbs without pain. It seemed the only visible damage was a toenail torn halfway off. I was luckier than my sister-in-law who had fallen over the weekend and fractured her hip.

Unfortunately, I had landed on the plant, crushing the plastic pot and breaking off a few of the flowers. We re-potted the plant, and I believe it, too, will recover.

These two falls made me think of all the times Jim fell. As I worked on his memoir Indelible, it became apparent to me that he had fallen more times than I remembered. None of Jim’s falls resulted in broken bones, but he often had bruises, swelling, and cuts that had to be stitched.

Jim’s main problem seemed to be balance. After several falls, he eventually used a merry-walker, a device that looks much like a baby walker for adults. He even managed to flip the merry-walker from time-to-time and the nursing home weighted it down. At one time, he was falling out of bed, so they placed it on the floor.

Up until the last several months of Jim’s life, I was able to take him for walks. I held onto him, and he seemed to do pretty well. Once he began to tilt his head back most of the time, I had more problems keeping him balanced. Eventually, our “walks” involved pushing a wheelchair around the parking lot.

A myriad of problems associated with dementia can increase the risk of falling. Dementia causes problems with balance and gait, confusion, vision and perception, and, of course, the ever present medication.

According to the CDC (Centers for Disease Control and Prevention), nearly 32,000 people died from unintentional falls in 2014. Injuries from falls are the most common accidental death for older adults.

Six out of every ten falls happen at home. NIH (National Institutes of Health) has some suggestions to make our homes safer while we go about our daily activities. Slick floors and poorly lit stairways are two examples of hazards.

NIH lists these factors that can lead to falls: (1) loose rugs, (2) clutter on the floor or stairs, (3) carrying heavy or bulky things up and down stairs, (4) not having stair railings, and (5) not having grab bars in the bathroom.

If you want a to-do list:

·         Remove safety hazards. It is easy to trip over electrical cords, clutter, dog dishes, or small furniture. One time as I was knocking down cobwebs, I tripped over a footstool.
·         Improve lighting. Make sure bulbs are bright enough that you can see where you are going. Have a lamp at your bedside, night-lights throughout your home, and keep a flashlight handy.
·         Install handrails and grab bars. Stairs and bathtubs are prime spots for accidents. Having something to hang onto reduces the risk.
·         Move items to make them easier to reach. As a short person, I applaud this idea. Almost everything is out of my reach!

Having a recent fall makes me more aware of the danger. I had a really bad fall on ice one time and my first thought was that I was going to die, my second thought was that I had “broken” my head. Ice is another story for different season. For now, let’s work on those indoor hazards that might catch us unaware.

Copyright © May 2017 by L.S. Fisher
http://earlyonset.blogspot.com

Tuesday, May 9, 2017

An Eye on the Goal: A Cure for Alzheimer’s

Setting a goal is the first step to success. If you don’t know where you are headed, you don’t really know when you get there.

In the year 2001, our local Alzheimer’s Chapter Executive Director Penny Braun asked if I’d like to go to Washington, D.C., to the Alzheimer’s Forum. “We’re asking for research funding,” she told me. “The goal is one billion dollars.”

“Well, we need to find a cure, and I don’t mind asking for a billion dollars,” I said with full confidence. It wasn’t long before I discovered that research funding was way short of a billion dollars. Alzheimer’s was pushed firmly to the back burner and funding was so tiny it barely made a blip on the NIH budget.

So year after year, I packed my bags and went to D.C. with that illusive billion-dollar goal in mind. I can remember being challenged with, “And just where would we get that money?” and “We can’t ‘earmark’ NIH funds.” We inched a little higher, except for some of the tight budget years when we lost ground.

Things began to look up when the National Alzheimer’s Project Act was approved in 2010. This act required the Secretary of the Department of Health and Human Services to annually update the National Alzheimer’s Plan. The plan laid out a goal to prevent or find an effective treatment by 2025.

The Alzheimer’s Accountability Act of 2015 required scientists at NIH to submit an annual Alzheimer’s research budget to Congress. This “bypass budget,” and it lets Congress hear what scientist think should be in the budget for Alzheimer’s research to meet our goals. They determined that if NIH invested $2 billion in research, we could meet the goal.

It wasn’t easy to jump research funding from the mid-millions to $2 billion. It wasn’t not an easy sell, and it seems there was always a medical crisis that got the billions to stop them while the five million people with Alzheimer’s waited for a cure.

Alzheimer’s advocates are determined people! Alzheimer’s disease costs our country $259 billion annually, but research dollars have traditionally been tight. In 2015 (FY 16), we received a historic $350 million increase.  Once this increase was appropriated, the annual research budget was closing in on the billion-dollar mark at $991 million.

In 2016 (FY17), the Senate Appropriations Committee requested a $400 million increase which would bring our total to $1.4 billion. We celebrated with the appropriations chair Senator Roy Blunt at the 2016 Alzheimer’s Forum.

Then, this year, we received the bad news that NIH’s overall FY17 budget would be cut, and our historic increase was in jeopardy. We knew we were fighting an uphill battle to reach our goal. We weren’t sure if we had been successful, but our champions vowed to fight for us.

Once the budget was approved, my inbox was filled with “hip-hip hoorays” as Alzheimer’s advocates cheered the success of reaching our research goal.

In his letter to advocates, Alzheimer’s Association CEO Harry Johns said, “This has been a historic week for the Alzheimer’s Association, the Alzheimer’s Impact Movement (AIM) and our cause. As you know, on Monday, congressional leaders from both parties and both houses of Congress announced that the 2017 federal government funding bill includes the largest increase in history for Alzheimer’s research, $400 million. Today, the president signed that increase into law, bringing Alzheimer’s research funding at the National Institutes of Health (NIH) to nearly $1.4 billion.”

First goal reached (around at least since 2001): research funding of $1 billion. Next goal: finding a cure by 2025, or sooner! The sooner, the better. Keep an eye on the goal.

Copyright © May 2017 by L.S. Fisher

Sunday, April 30, 2017

Splish Splash


It was pouring down rain, but my cousin Reta was in town from Texas. The plan was to go to my mom’s house at Versailles, and then Mom, Reta, and I were going to drive to my brother Mitchell’s house for a jam session. My brother Jimmy and my sister-in-law were going too.

Saturday morning I called my mom. “Are we still going?” I asked her. My phone had lit up time-after-time with AccuWeather’s areal flood warnings.

“Yes, Jimmy says we’re still on.”

“Okay, I’m on my way, but if water is across the road, I’m turning around.” I’d always been afraid to drive into water, especially on Sinkhole Road where I’d lived until a few years ago.

Radar showed a swath of rain covering most of the state and the entire area included in my travel plans were a bright red. As I drove in a pouring down rain, I noticed impromptu lakes in fields and ditches that looked like mini-rivers, bank full. My wipers worked overtime to keep the splish-splashing rain off my windshield.

After a grueling drive, I pulled into the parking lot next to my mom’s and turned off the engine. The wipers kept going. How odd. I turned the car on; shut it off. Wipers swished merrily along. How great is that? I couldn’t imagine getting out of my car and leave the wipers running. I called Harold. “Take the key out,” he said. The wipers kept going. I couldn’t get them to turn off. The rain came down harder.

Harold called the car dealership, and they said I’d have to bring it in for them to see what was going on. Great. That would involve driving an hour back home. “Well, I’m going in to visit mom anyway.” I put on my raincoat and opened the door. The wipers shut off.

I crossed the parking lot and splashed through the water pooled on the sidewalk in front of Mom’s door. “Well, I’m not going anywhere else,” I announced as I removed my coat, thankful I’d worn my waterproof boots. My jeans were drenched. Mom called my brothers, and they were fine with the cancellation.

“I think it was a sign when the wipers wouldn’t shut off,” I said. The constant rain and “severe” flash flood warnings were other signs.

Sometimes, we have to pay attention to clues. Sometimes gut feelings tell you not to do something, and it pays to heed the warning.

I can easily think of several times I had gut instincts about people. When Jim and I were first married, a “salesman” came to our door and wanted to know if my husband was home. “Yes, he is. Do you want me to get him?” I asked through the locked storm door. I turned away as if to get Jim, closed and locked the door. The man practically ran to his vehicle and sped away.

Researchers say that our subconscious minds notice something is slightly out of kilter; dopamine neurons alert us to this. Bottom line, there’s a scientific explanation why we sense danger. Our brains are our early-warning systems.

Jim was an intuitive thinker and believer in gut feelings before he developed dementia. Many of the symptoms related to Alzheimer’s disease may be due to a massive disturbance in dopamine regulation in the brain. One of the jobs of dopamine is to regulate the flow of information to different areas of the brain to aid cognition. Some researchers believe dopamine is responsible for many of the non-cognitive symptoms in neurodegenerative brain diseases, including anxiety, depression, apathy, and mood.

A “sign,” intuition, gut feelings, whatever you want to call it—I take heed. After I’d been at Mom’s for about an hour, a bad storm blew through. Thunder, lightning, and a strong wind, made us all glad that we’d stayed put. Out of control windshield wipers helped keep my trip shorter and had me headed toward home earlier.

After our visit, I returned home in a rain that caused floods, which in turn, were responsible for cars being swept away. I breathed a sigh of relief when I pulled into my garage and shut off the engine. What about the windshield wipers? They stopped immediately, as they had every other time until today.

Copyright © April 2017 by L.S. Fisher