Monday, July 9, 2018

Is the End Near?

I’ve always been fascinated with the universe. When I look at the moon and stars at night, it makes me realize what a small speck I am on the landscape of this world.

Throughout my life, I’ve heard different people proclaim that our world was coming to an end. The most recent deadline was April 2018. Well, unless something happened that I wasn’t aware of, we are still here.

When I was a kid, sometimes I attended a church that believed the end was imminent. The preacher would actually pray for the world to be destroyed and for the rapture to begin. I could not throw myself into that prayer wholeheartedly, and I was always happy to walk outside and see that nothing drastic had happened.

But there is one end that I could support unequivocally—the end of Alzheimer’s. Exciting news from the world of research indicates that scientists have finally made an important breakthrough.

Biogen and Eisai announced that the drug BAN2401 just finished phase 2 and that the drug demonstrated slowing the progression of Alzheimer’s. The positive results were after an 18- month period. This is another drug that targets amyloid beta proteins. Some researchers had begun to question the amyloid beta approach because of the massive failures. In fact, Biogen was disappointed in the 12-month data and considered abandoning the research. Now, they are looking at a phase 3 study. The predictions are 50% that BAN2401 will be approved.

This is extremely good news following Pfizer’s announcement that they would abandon development of an Alzheimer’s drug. Research costs are astronomical and failure is the norm Thus far, the quest for an effective drug for Alzheimer’s has resulted in a 99.6% failure rate. The FDA has not approved an Alzheimer’s drug in over a decade.

The Alzheimer’s drugs on the market today treat the symptoms of Alzheimer’s and can improve quality of life for some people with dementia. What they don’t do is slow the progression of the disease.

A treatment that slowed the progression or delayed the onset of the disease would result in big savings for families and the government. According to the Alzheimer’s Association, if a treatment is found by 2025 that would delay the onset of Alzheimer’s by five years, it would save $220 billion in the first five years. By 2050, families would save $87 billion and America $367 billion. By changing the trajectory of Alzheimer’s disease, we would save lives and dollars.

The question remains—is the end near? Will BAN2401 be the success story we’ve been waiting for? Only time will tell. In the meantime, we can all pray fervently that the end of Alzheimer’s is near.

Copyright © July 2018 by L.S. Fisher

Thursday, June 28, 2018

Routine Helps Us Cope

Missouri weather is well known for its extremes. Our dog likes to hang out on the deck while we go to town, but sometimes, like today with a 100+ index, it just isn’t a good idea. Recently, Harold built a “room” for her in the basement where she can stay while we make short trips to town. We furnished it with a chair, a dog bed, and toys.

This morning, I took the dog outside. She immediately trotted toward the garage, went down the steps to the basement, and stopped in front of the basement door. I was surprised that she had noticed we were getting ready to go somewhere and led the way to her room. Although we’d only used the room a few times, she already knew the routine.

Routines can become boring and sometimes we feel compelled to shake things up a bit to keep life interesting. But there’s something to be said for the stability and comfort of knowing our day is going to click along as expected.

Daily routines keep our lives running smoothly, especially if we have a loved one with dementia. Having set times for meals, bathing, dressing, activities, and bedtime helps both the caregiver and their loved one with dementia make it through the day.

Keeping a routine is helpful for a person who becomes confused. With subtle help and reminders, your loved one can maintain independence for as long as possible. It is important to be flexible enough to deal with the unexpected.

We all fall into patterns of routine. For me, it’s to put on a pot of coffee first thing in the morning. I don’t feel quite human until after my first cup of coffee.

A few days ago, I squeezed out the last few grounds of coffee from the canister and knew I had to refill it. While we were in the middle of fixing biscuits and sausage gravy, I decided it would be better to get that chore out of the way after I’d already downed a cup of coffee. I brought in a new can of coffee and grabbed the tab on the foil seal.

Coffee shot out of that can with all the force of a bottle rocket. Coffee grounds pummeled my apron, my chest, down my blouse, all over the counter, and of course, all over the floor I’d mopped the evening before. Talk about a mess! Talk about ruining my sleepy-eyed early morning routine.

After that, Murphy’s Law kicked in. While Harold was stirring gravy, I placed the biscuit baking sheet on the unused burners. “It’s hot,” I said. He accidently touched his arm to the sheet, jerked his hand, and gravy went flying. Awe, how much better it would have been if our routine had not been thrown out of kilter.

Routine and flexibility are two sides of the same coin. For those of us who prefer calm to drama, routine is our friend and flexibility keeps us from freaking out when things go wrong.

Sometimes we just have to clean up the coffee grounds, change our clothes, and jump in the shower. Before you know it, you are back on track to have a normal day.  

Copyright © June 2018 by L.S. Fisher

Saturday, June 16, 2018

A Birthday Wish

I sat in the Kansas City airport contemplating the 2018 Alzheimer's forum, and couldn't help but think about birthday wishes. For the first time ever, I'll be visiting with my legislators on my birthday.

I can remember when I was a child, I thought about my birthday wish ahead of time. I don't recall any earth shattering wishes. I remember homemade birthday cakes with candy pieces spelling out "Happy Birthday" and candle holders made out of the same sugary confection.

With eight kids, birthdays weren't unusual or cause for a huge celebration. I've had a few memorable ones over the years of my life. I think the one that stands out in my mind the most was a camping trip gone haywire. A huge group of the Fisher family was camping at Rhody Lake in Oregon. To make a long story shorter, I slept in the tent with a bunch of kids and one of them peed on me. The next day, my birthday, was miserable. My kids were misbehaving, and I was cranky and out of sorts. No one, not even Jim, acknowledged it was my birthday and, oh, yes, I was feeling sorry for myself and too stubborn to bring it up.

Well, later in the afternoon, as everyone was relaxing around the campfire, suddenly here came my sister-in-law carrying a birthday cake and everyone started singing. I started crying when I realized no one had forgotten, they just wanted to surprise me.

Years later, right after we moved into our house, the family decided to have a surprise birthday party for me. Jim clued me in and I just met everyone at the door welcoming them to my "surprise" party.

So, whatever my birthday wishes were in the past, I know for sure what they will be this year. First, and foremost, I wish for a cure for Alzheimer's. In the meantime I wish that our legislative asks are met with favor. We have three federal priorities: An increase in Alzheimer's research funding, the BOLD Act, and PCHETA.

Alzheimer's is the most expensive disease in America. One in every five medicare dollars is spent on caring for a person with dementia.  The disease is expense both for the family and the government. The average monthly cost for a person with dementia at the end of life is $4,866. Palliative care reduces that cost to $1,534.

The only solution to negate the expense is to find a cure or effective treatment. This can't be accomplished without research. We are asking for an increase of $425 million for Alzheimer's research. The stakes are high in terms of human life and economic savings for families and our country. A treatment that would delay the onset of Alzheimer's by five years would save $220 billion during that period of time.

The Building Our Largest Dementia Infrastructure for Alzheimer's Act (BOLD) will create a road map to treating Alzheimer's like the public health threat that it is. This act creates a public health infrastructure countrywide. Increasing data collection, analysis, and timely reporting will save billions through early diagnosis. Centers of excellence will improve diagnostic procedures and quality of life for our loved ones.

One of the best decisions our family made was to use hospice care for Jim, and my only regret is that we did not use hospice sooner. Hospice provided comfort for Jim and for us as we faced the The Palliative Care and Hospice Education and Training Act (PCHETA) will ensure that end of life care is provided by well-trained workforce. Nearly half of all people with Alzheimer's depend on hospice care during their final days.

After a few days seeing the sites and catching up with my friends and fellow advocates, we are ready to roll up our sleeves and get to work. On Tuesday when we go to Capitol Hill, will will be armed with facts and figures, but more importantly we bring our personal experiences and passion to find a cure. Our hearts, wishes, and mission will be for a world without Alzheimer's, and we are willing to ask, ask, and ask again until there is no longer a need to ask. That is my birthday wish!

copyright (c) L. S. Fisher June 2018

Thursday, June 7, 2018

As Country as Can Be

One of the line dances we do in our line dancing exercise class is called “As Country as Can Be.” I think that would be a fitting description for me.

I was raised in the Ozarks, miles from the nearest town, down a dirt road full of potholes. The first time Jim drove to my house, he declared, “This is so far back in the sticks, I bet you have to pipe in sunshine.”

It’s also well known that you can take the girl out of the country, but you’ll never take the country out of the girl. I’ve lived in four different towns in three different states, and the shortfall all of them had was—they were not in the country.

I was much happier in the most modest home in the country than I was when we lived in a condo in town. Still, as a barefoot country kid, I never dreamt that I would come as far as I have in my life or live in the kind of home I have now. I realize this is backwards for kids today who often take a big step down when they go out on their own.

When I walk the dog, I enjoy the quiet, starlit nights and lazy country mornings. This morning during our walk, I saw a squirrel clinging to a dead branch, swinging back and forth. It reminded me of our entertainment when we were kids: swinging on grapevines, sliding on mossy rocks in the creek, swimming in the lake, or walking in the woods. Our home had no phone or air conditioning. I can remember settling down in a cool spot in front of the fan to read library books.

One of the benefits of coming from poverty is that you are grateful for what circumstances and hard work have brought your way. I can remember during the recession some people were terrified of losing their wealth and being (gasp!) poor. The way I looked at it, I had already been there and it didn’t scare me.

Some people think that poor people are miserable. It couldn’t be further from the truth. Other people think money equates happiness, and that isn’t true either. If I’ve learned one lesson in life, it is that money makes life’s journey smoother, if you don’t allow money to be in the driver’s seat.

Working on Indelible, brings back memories of the financially stressed years that Jim and I had. We always managed to pay our bills, feed our kids, and have a roof over our heads. Jim was able to keep any old $200 car running, so we had transportation. So what if my clothes came from garage sales? We made it through the hard times on our own.

The hard financial times were a veritable walk in the park compared to the years of dementia. Those times were trying, but I was glad that we lived in the country. When Jim wandered off, he was in familiar territory and wasn’t in danger of walking into traffic.

My life has spanned over six decades. I still enjoy starry nights as much now as I did when I was a kid lying on a quilt in my Grandma’s front yard. I still look upon the heavens with wonder and awe.

No matter where the remainder of my life might take me, or where I may live, nothing will ever take the country out of me. I will always be as country as can be.

Copyright © June 2018 by L.S. Fisher

Monday, May 28, 2018

The Right Stuff

I love biscuits and gravy. As far as I’m concerned, it is the best breakfast ever. A few weeks ago, I pulled down the canister of Bisquick and made biscuits that didn’t raise. “The Bisquick is too old,” I told my husband. Nevertheless, we poured sausage gravy on top and ate them anyway.

After I bought a new box of Bisquick, I made a batch of tasty biscuits that didn’t require gravy to make them edible. Strangely, the next batch was hard and heavy. I grumbled and threatened to buy canned biscuits. Just as we finished eating, Harold said, “You have that new box of Bisquick,” and he pointed at the small box nestled between the cereal canisters.

“No wonder they were a flop! I didn’t use the right stuff.” I had forgotten that I hadn’t put the new Bisquick in the canister. No matter what we do, if we don’t use the right stuff, we don’t get optimal results.

I made good biscuits again Monday. Normally, on Memorial Day, I’d be rushing to make it to the ceremony at the Veterans Cemetery in Higginsville, but between the oppressive heat and road construction, my sister-in-law Ginger and I went Sunday to place flowers in front of Jim’s resting place. An unexpected advantage of being at home was that my son dropped by for a visit and joined us for biscuits and gravy. I was glad I’d used the right stuff!

When Jim joined the U.S. Army, he showed that he had the right stuff. He fulfilled his obligation as a citizen by serving a tour of duty in Vietnam. Although he didn’t agree with the war, he loved his country. The war changed his life. Between PTSD, a neck injury, and exposure to Agent Orange, he lived with chronic physical and mental pain until his death from dementia.

On Memorial Day, we think of the people who sacrificed for our freedom. We think about the soldiers who died and those who died inside. We honor those who had the right stuff to risk life and life altering injury to fight for the United States of America. We place our hands on our hearts and pledge allegiance to the flag.

The original pledge of 1892 was recited as “I pledge allegiance to my Flag and to the Republic for which it stands: One Nation indivisible with Liberty and Justice for all.” With these twenty-three words, Americans pledged that we would not be divided and that we wanted liberty and justice for everyone.

Later, of course, “my flag” was changed to “the flag of the United States of America.” The U.S. was a land of immigrants, and this change was to clarify the pledge was to the U.S. flag. The last change in 1954 was to add “under God.”

A lot has been said lately about respecting the flag, but we disrespect it in many ways without a second thought, or being aware that we’ve done so. The flag is not to be used for advertising, printed or otherwise impressed on paper napkins or boxes that are for temporary use and discarded. No part of the flag is to be used in a costume or athletic uniform.

It is important to think about the right stuff that goes into being an American. The right stuff begins on the inside and manifests itself in how we treat others. Anything less and we disrespect the flag and those who risked everything to protect our freedoms.

On Memorial Day, we think about the sacrifices that make this the country it is, but it’s our everyday behavior that makes that sacrifice worthwhile.    

Copyright © May 2018 by L.S. Fisher

Saturday, May 19, 2018

Do You Hear What I Hear?

I stopped by Arby’s one night last week and ordered the usual: regular roast beef, turkey ranch & bacon sandwich, and curly fries. “One Arby’s sauce. That’s it,” I said to indicate I didn’t want any drinks. He read the order back to me and at the end he said, “a root beer.”

I wasn’t sure what I’d said that he interpreted as “root beer” but I had to laugh. It just struck me as funny that he heard something that I hadn’t said at all.

After I got home, I saw a graphic on Facebook that said, “Yanny or Laurel” which do you hear? Well, I gave it a listen and didn’t hear either word. I heard “Yammy.” Later, I saw two other people who heard “Yammy.”

“I guess we march to the sound of a different drum,” I wrote beneath the original post. Later, I read an explanation—it depends on which tones an individual hears best, the speakers on your electronic devise, and the acoustics of the room. As an experiment, I had my husband listen to the special word. Both of us were listening at the same time. He heard “laurel.” I heard “Yammy.”

To me this experiment explains a lot. Is this the reason that people hear completely different things? For example, you listen to a speech. One person thinks it’s great and another person hears the flaws. One person hears a profound statement, and another hears nonsense. Okay, so this may not have to do with one person hearing “yanny” and another hearing “laurel,” but in another way it is similar. How we perceive speech is as individual as each person who is listening.

This one word may provide some insight into how a person with dementia might hear something totally different from the words we say to them. Think about it. If two people can listen to the same sound, but hear different words, how much more confusing would the sound of words be to a person with a disease that affects his brain?

Communicating with a loved one who has Alzheimer’s is challenging. Because words may become difficult, tone of voice and body language are vital to good communication with a loved one.

Although disputed by some, Albert Mehrabian’s study of communication is sometimes called the “rule of seven.” His study indicated that only seven percent of communication is verbal, while fifty-five percent is body language, and thirty-eight percent is tone of voice.

Regardless of whether you really believe the rule of seven in normal communications, I would agree that it certainly applies to a person with dementia. When words begin to fail, other forms of communication are essential to making the person understand you. Tone of voice and facial expressions convey your thoughts and emotions more effectively than words alone.

Hearing a mechanical voice say this special word could be a breakthrough in the art of communication if we allow it to me. Some people say the argument is “silly,” and I’ll have to agree to get in a heated argument over how the word sounds to you is silly. It can be a valuable reminder that people don’t always hear exactly what we say even accounting for those who are hard of hearing, or have selective hearing. Even at seven percent, verbal communication is overrated if your loved one has dementia.

Copyright © May 2018 by L.S. Fisher

Tuesday, May 15, 2018

The Unexpected and Unexplained

I began an organized effort to clear my calendar several months ago, but I’m yet to reap the benefits of any hours gained. I had plans to spend some of that extra time working on Jim’s memoir and, of course, the Walk to End Alzheimer’s will be here before we know it!

I’ve been busy lately with updating a website for the change of officers in Sedalia Business Women. I also took photos at the installation and completed a photo book for the outgoing president. It seems I’ve barely had time to breathe for trying to get everything finished.

Our incoming president, Donna, was president year before last, but her husband became ill and passed away while she was serving her term. She missed a lot of meetings and felt like she had not had time to enjoy her time as president.

Usually, installation is pretty straight forward, but somehow the menu was mixed up. Instead of the chicken and veggies we were expecting, we had a buffet of hamburgers, potato salad, and basically, a picnic setup. After a talk with the chef, wait staff rushed around and added grilled chicken and vegetables. It was unexpected, but tasty just the same.

Other meetings were going on and the wait staff rushed past us with platters of great smelling food on their way to other rooms. We stepped out of their way and finally, the traffic slowed down. After our meal, installation of officers began with a candlelight ceremony.

As the officers stood there holding their candles, I stepped close to the buffet table to snap a few photos. Out of the corner of my eye, I saw a man standing beside me. I figured he was waiting patiently for me to take my photo, so I snapped a few shots and lowered my camera. I turned to give him the go-ahead, but to my surprise no one was there. So to the unexpected, we add the unexplained.

I found out many years ago, that not everything that happens in life can be explained, and that sometimes things happen that are downright creepy. My grandkids used to want me to tell them some of the stories of my experiences with the unexplained at bedtime, until my granddaughter would say, “Grandma Linda, you are creeping me out!”

Some of the unexplained isn’t creepy at all. Sometimes, it can be comforting, or a message. I’ve noticed these experiences happen during times of change. Shortly after Jim and I moved into our mobile home, Jim was working in the garden and I was planting flowers. While my back was turned, Jim saw his uncle that had passed away years before. Jim said it wasn’t a ghost—it was his uncle standing there beside him. His uncle said, “Jim, you need to sharpen your hoe.” Now, wouldn’t you think any message from the beyond would be profound? From the shocked look on Jim’s face, I knew he told the truth. When they worked in the fields together, Jim said his uncle often told him to sharpen his hoe. 

Some people believe they have a guardian angel to protect, guide, and comfort them in times of trouble, or in times of change. Whether we believe in angels watching over us, or just leave the unexplained, unexplained is an individual choice.

After the candlelight ceremony, Donna gave her acceptance speech and announced her theme, “Guardians of the Future.” She broke down when she talked about her husband and how everyone had rallied to keep the club going so that she could be with him.

As far as the man I saw at installation, I have an idea who he might have been and why he was there. I don’t think he was there for me, or for me to see. I don’t think he even intended to be seen; he was merely offering a comforting presence during a time of change.

Copyright © May 2018 by L.S. Fisher

Tuesday, May 1, 2018

Visit with Congresswoman Hartzler

When I looked at this week on my calendar, it seemed like it had been attacked by a magic marker. Some days had as many as three events with only Wednesday sitting in the middle of the week without a single notation.

Monday was a red-letter day on my calendar because that was the day we local Alzheimer’s advocates were meeting with Congresswoman Hartzler. Our meeting was scheduled for 10:30 at the Sedalia Fire Station. Jamie, a firefighter and a Walk committee member, and I decided to rearrange the room so that it was more conducive to conversation. We called it a square, round table setting.

The Congresswoman arrived on schedule, and after introductions, we sat down to talk about research funding and the BOLD Infrastructure for  Alzheimer’s Act.

As Congresswoman Hartzler’s ambassador, I thanked her for her support of Alzheimer’s research. In the years I’ve traveled to D.C., I’ve seen funding increase from $400 million to more than $1 billion. The professional budget calls for $2 billion to reach our goal of a cure or effective treatment by 2025. We are asking for an increase of $425 million for fiscal year 2019.

We talked about how Alzheimer’s is a public health threat because the burden is large—five million Americans have Alzheimer’s disease. Because Alzheimer’s is a public health issue, the Centers for Disease Control and Prevention (CDC) would collect data on cognitive decline and lead the nations efforts to improve quality of life for those with the disease and reduce the costs associated with it.

Alzheimer’s affects not only the person with the disease, but also affects the caregiver. Several caregivers shared their stories. My mom said, “I saw how stressed Linda was…every day. She was working and taking care of Jim. She couldn’t sleep because Jim would wander off in the night.”

Another advocate shared how her grandfather’s personality changed and how things he said to her grandmother stayed with her even after he passed away. Other caregivers told of instances where the person with the disease outlived the caregiver.

We need to use a BOLD approach to end Alzheimer’s! The BOLD Act establishes Alzheimer’s Centers of Excellence; provides funding to state, local, and tribal public health departments to promote early diagnosis; and increases collection and reporting of data on cognitive decline. As our time drew to a close, I made the “ask.” Congresswoman Hartzler said she would study BOLD (HR 4256) and give consideration to lending her support. She praised our handouts and thanked us for keeping her informed about our legislation. 

We had forty-five minutes with the Congresswoman. As she was leaving, she hugged my ninety-one-year-old mother and said, “When I grow up, I want to be you.”

Copyright © May 2018 by L.S. Fisher