Thank you for supporting Walk to End Alzheimer's!

Thursday, September 21, 2017

For Those Who Wait

We didn’t get any decent tomatoes all summer long. Harold left for town this morning and gave me a call. “We have three or four semi-ripe tomatoes.”

“Okay, I’ll go out and pick them,” I said. I walked out to the potted tomato plants expecting to pick a few and bring them inside. Ripe tomatoes were everywhere. The saying, “Good things come to those who wait” popped into my head.

You wouldn’t think that I’d even think of this expression since patience is not one of my virtues. Sure, I have a lot of good qualities: empathy, a good work ethic, general optimism, and so forth. Patience does not make that list. Nope, not even as an afterthought.

My lack of patience gets me into trouble sometimes. I get really frustrated when I’m trying to open a file on the internet. I absolutely hate waiting for that little circle to stop spinning. Or for an ad to pop up and obstruct my view. Life is too short to wait, and wait, and wait. Often, I’ll just close it and figure that I didn’t really need to know the latest “shock and awe” news story.

Patience. I know men don’t usually have any patience, but everyone expects a woman to have it. I used to have a certain amount of patience, but I guess years of budgeting my time has zapped what was left of it.

My saving grace is stubbornness, or bull-headedness if you ask certain people. When I don’t have the patience to complete a task, I’m stubborn enough to see it through.

I’m starting to lose patience with a cure for Alzheimer’s. People die every day from Alzheimer’s and related dementias. We can’t find a cure soon enough to suit me. I can’t wait for the first survivor.

We thought about that first survivor at the Walk to End Alzheimer’s this year. During opening ceremony, we hold high pinwheel flowers in various colors to represent the walker’s connection to the disease.

I always choose a purple flower because I’ve lost someone to the disease. Yellow is the color for caregivers, blue for those who have the disease, and orange for those who are supporters. This year, a new flower was introduced. Two young children held up the white flower that represented our hope for the future. The white flower is for the first survivor. That person does not exist at this time.

After the ceremony, they gave me one of the white flowers. I hope before much more time passes, I can take the white pinwheel back to the walk and personally hand it to the first survivor in our town. I hope to see our walk filled with white pinwheel flowers.

No, I will not patiently wait for the first survivor. I’m going to be walking, advocating for more research funds, and doing all I possibly can to push, cajole, and become the squeaky wheel.

Patience is not one of my virtues. I might as well make the most of my shortcoming.   

Copyright © September 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Monday, September 11, 2017

Together We Can…

Saturday was my twentieth Alzheimer’s Walk.

In 1998 the year of my first walk, four troublesome years had passed from the time I had noticed Jim was having trouble remembering basic information. Jim had always had an amazing recall for numbers and dates, but had forgotten his social security number. I thought that strange, but I didn’t push the panic button until he admitted he didn’t know his birth date either.

After testing, it was determined that Jim had dementia of the Alzheimer’s type. Jim, of course, insisted he didn’t have “that,” as he referred to it, but when we saw an article about an upcoming “Memory Walk” in Sedalia, he wanted to go. “I have memory problems,” he said. I had already signed up for the walk and had raised some money, but since Jim didn’t have “that” I thought he wouldn’t want to go.

We arrived at the first walk to discover we were the only people from Sedalia. The other walkers were Helen and Chuck from Slater, Joetta and Penny from the Alzheimer’s chapter office in Columbia, and Penny’s dog, Victoria. Six people and a dog, and I knew all their names—including the dog.

Saturday, was a different story. More than three-hundred walkers and thirty-six teams crowded into the highway gardens. We had professional DJ’s, a super sound system, corporate sponsor booths, volunteer shirts, a professional photographer, and pinwheel flowers. We even had an official playlist of songs. At the first walk, the closest thing we had to music was Helen’s hunting horn. The highlight of the walk was going into the VFW where a veteran asked Helen to blow her horn. After she blew her horn, they took up a collection to add to the walk total. The grand total was $600, almost all of which I had collected from co-workers and friends.  
 
To make my twentieth walk special, I wore my 1998 shirt and my team wore the 1999 - 2017 shirts. We knew they weren’t exactly vintage shirts, but my niece and I laughed about struggling not to call them vintage. Old, I guess was the correct terminology.

Yesterday, Facebook posted a “memory” from twelve years ago, September 10, 2005. My son, daughter-in-law and their two kids were at the Memory Walk wearing 2005 shirts. I smiled at how small the grandkids were, and then I realized that was how small they were when Jim died earlier that same year. It made me incredibly sad to realize that they lost their grandpa at such a young age, and Jim missed out on seeing his grandkids grow up. Family was everything to Jim. He loved being a dad and was over the moon about being a grandpa.

It’s hard to believe that I’ve been doing what I’ve been doing for twenty years. I logged my shirts before I took them to the walk to make sure that all the years were covered. Some of the shirts did not have a year and I had to look at photos to determine which years went with which shirts. Then, I identified the shirt by what it said: Move; We’re on the Move; WALK (in Alzheimer’s Logo).

After the walk changed from the Memory Walk to the Walk to End Alzheimer’s, the message on the shirt conveyed increasingly positive meanings. The 2017 shirt, Together We Can End Alzheimer’s, told its own story. When we work together, we can change impossible to possible.

It is shocking to realize that my kids are older than I was when Jim developed those first troubling symptoms. Time passes so quickly. Lifetimes come and go. There have been times in my life when I felt I was walking alone, but more often, I’ve relied on and been supported by others. Together, we can accomplish anything. Together, we can accomplish everything. Together, we can end Alzheimer’s.

 Copyright © September 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Sunday, August 27, 2017

Remembering Jim

Today would have been Jim’s 72nd birthday. In honor of his birthday, I wanted to share some of my memories of Jim before dementia.

Jim’s uncle introduced me to Jim on a hot summer day in 1968. I don’t know if it would qualify as love at first sight, but it was darned close to it. He was drafted in September and after training, he left for Vietnam in May of 1969.

Jim liked to say he won me in a craps game. He came up with the idea that he could take R&R in Hawaii, and I could fly there and we could get married. The only problem was, neither of us had any money. Jim decided to take what money he had and shoot craps to finance a honeymoon. Sure enough, based on the roll of the dice, he had enough money to fund the trip.

We were married at Fort DeRussy on December 20, 1969. It was a small wedding with the chaplain, Jim, and me. The witnesses signed our marriage certificate before the nuptials so they could go home. Jim, being Jim, refused to wear his uniform for the wedding. He bought some “civvies” for the ceremony.

During the early morning hours of Christmas Day, Jim went back to Vietnam and I flew back to the states. We began our lives together when he returned home April 5, 1970. He still had a year’s obligation to Uncle Sam so we moved to Manhattan, Kansas.

The couple who had the smallest wedding also had the smallest apartment: one small room with a bathroom. We had no air conditioning, and I mostly remember the sweltering heat and the two of us sleeping on a twin bed. In early fall, we moved to a bigger apartment in the same house.

Jim was a family man. He loved spending time with his family and my family. We traveled home about every other weekend. We always drove an old clunker because Jim was a genuine shade-tree mechanic and could keep any vehicle on four wheels running well past its prime.

The army didn’t pay much so we learned early on to budget our money. We always had a savings account for emergencies. Our entertainment was inexpensive. Jim would play his guitar and sing, we went for long drives, and we spent a lot of time at Tuttle Creek because Jim loved to fish. If we really wanted to splurge, we went to the movies or ate at Dog and Suds.

Glen Campbell’s song said “Manhattan, Kansas, Ain’t No Place to Have a Baby,” but we were excited to become parents. Eric was born at Fort Riley Hospital and cost us a whopping $7. When Rob was born two years later at Bothwell, we sold my car to pay the $700 bill.

Jim loved to travel, and we often made trips to Oregon to visit relatives and his childhood places. Later, we went to Colorado every summer to camp in the Rocky Mountain National forest. Jim was happiest when he “had something to look forward to” code for a road trip. He would pack the van for days in anticipation of our annual vacations.

Jim was generous to a fault. He would literally give someone the shirt off his back. He gave away valuable musical instruments to other family members. He was stubborn and wouldn’t do anything that was against his principals. He could be exasperating at times.

Vietnam haunted him. He was mentally and physically broken by his time in the jungle. He had a fractured neck that wasn’t treated until years later. He had PTSD before anyone knew what it was. He suffered deep depression and had to be hospitalized twice.

Jim was intelligent, loved to read, play video games, had a wacky sense of humor, was musically talented, and a deep thinker. He believed in ghosts, the unexplainable, angels, God, and that death was simply closing one door and opening another.

He loved with all his being and was fiercely loyal to those he loved. He loved his boys, his grandchildren, his parents, siblings, aunts, uncles, nieces, nephews, cousins, friends, and I never, ever, doubted his love for me. He called me his bride, princess, honey, sweetheart, but never called me Linda.

Of all the things I miss about Jim, I think I miss our quiet times the most: drinking a cup of coffee and talking about the mysteries of life. I miss the adventures, the comfort, and all the things that made Jim the unique man who stole my heart and held it gently.

Copyright © August 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Thursday, August 24, 2017

Memory Trick and Tricks of Memory

As an Alzheimer’s blogger, I think a lot about memory and how it often tricks me. My husband finds that memory tricks, or association, helps him to remember some important fact.

One day last week, Harold asked me to remember a number. Generally, when he tells me to remember something, I write it down. That is the only memory trick I know. It so happened that when he asked me to remember the number, I was outside on the deck drinking coffee and didn’t have anything to write with, or on, for that matter.

“Okay,” I assured him, “I can remember that.”

About thirty minutes later, he said, “What was that number I asked you to remember?”

“Two-eight-four?” I guessed.

“You are close, but wrong,” he said. “It was two-eight-six.”

“Well, if you remembered it, why did you ask me?”

“It’s really easy to remember, if you remember the first number is two, and if you subtract two from eight, you get six.”

“Uh, okay,” I said. I really didn’t think that would help much.

My most memorable experience with association as a memory trick was a speaker who spoke at an assembly at the College of the Ozarks. The man, whose name I do not remember, walked around campus and learned the names of a few dozen students.

At the assembly, he had them stand up and he pointed at them one at a time and gave their names. He explained that he had accomplished this feat of memory by associating the name with a mental reminder.

Later, a student inspired by the speaker’s phenomenal memory decided he could learn the trick . “Everyone calls me Capps,” I said. After that day, he called me “Tops” because he pictured something on top of my head.

Memory problems can create amusement for those of us who are so distracted that we can’t remember simple things anymore. Normal aging accounts for a certain amount of forgetfulness. My husband thinks my memory problems are because my mind is clogged up with too much trivia. “It doesn’t work like that,” I confidently assure him every time he says that.

Short-term memory loss is an early sign of Alzheimer’s disease. Along with short-term memory loss, a person with dementia can’t remember all the steps to complete a task. A strange environment can make this even worse.

One time, we were on vacation and Jim started to make a pot of coffee. The following excerpt from Jim’s memoir Indelible explains how dementia can turn an everyday task into an ordeal:
  
One morning Jim prepared to make coffee in the in-room coffeemaker. He picked up the pot, set it down, picked it up, and set it down. He looked around in confusion trying to decide what to do next. From the bed, I said, “Put coffee in the basket.” 

“Oh! That’s right.” He added the coffee and then acted as if he expected the coffee to make itself.

“Put water in the pot.” He put water in the pot.

“Pour it in the top.” He poured it in.

“Turn the pot on.” He turned it on. As soon as the coffee was done, he was back in full form. He poured the coffee into the thermos, cleaned the pot, and brought me a cup of coffee in bed.

Memory is a tricky thing. As far as that pesky number, Harold and I were on our way to an appointment and he asked, “Do you remember the number I asked you to remember yesterday.”

“Two-eight-six,” I replied without hesitation. “What I don’t remember is why the number was important.”

Harold thought about it for a few minutes. Finally, he broke the silence with, “I don’t remember either.”

Copyright © August 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Thursday, August 17, 2017

Total Eclipse of the Heart


I can remember a solar eclipse when I was a kid. We were warned not to look directly at the sun, but to use a pinhole in a box to see the shadow of the eclipse. Now, in less than a week, we are going to see a total solar eclipse—a once in a lifetime event.

So how this weird happening is going to shake out remains to be seen. I live in the area of totality. That means I can observe the eclipse in my own backyard. It also means that some of my relatives who live outside the area of totality are going to share in the experience by coming to my house. That is, if the roads aren’t gridlocked with the thousands of folks from the four corners of the United States who plan to flock to the area of totality.

Watching the eclipse isn’t something you do on the spur of the moment. If you plan to look at the eclipse, you must have proper eyewear. Before we ordered ours, Harold researched the ISO ratings, reputation of the seller, and recommendations from the brightest minds in the world. His vigilance paid off since our glasses were not among those “recalled” due to being questionable.

All this talk about eclipses reminds me of Bonnie Tyler’s “Total Eclipse of the Heart.” I visualize a total eclipse of the heart as a heart that is beyond broken--a heart with a shadow hanging over it.

Some events in our lives can hurt our hearts seemingly beyond repair. When we lose a loved one to an accident, to incurable disease, or from suicide, life ceases to be the same. During the total eclipse of the heart, it seems that life will always hurt.

I can’t think of anything sadder than losing a child or a grandchild. As hard as it was for me to lose Jim to dementia, I can’t even imagine how heartbreaking it was for my mother-in-law. Our sons were grown when Jim developed dementia, but younger onset dementia or familial Alzheimer’s disease can often leave school aged children without a parent.

In the United States, 15.9 million unpaid caregivers provide care for a loved one with Alzheimer’s. Caregiving for a loved one with dementia is more labor intensive than for seniors without dementia. About a quarter of the caregivers responding to a survey reported they provided 41 or more hours of care a week. Caring for a loved one with dementia is often a long-term commitment. According to the NIH and aging trends study, 47.4% provided care for more than six years.

Investing the time and energy to provide quality care for a loved one with dementia is the ultimate act of love. Caregiving becomes a way of life and when that ends, emptiness fills the space.

The concept that love can be a total eclipse of the heart takes on additional meaning when you learn more about a total eclipse. The world, as we know it, is transformed into a strange place when darkness falls in the middle of the day and the temperature drops dramatically.

Time becomes your friend as you rebuild your life. Much like the total eclipse, the shadow gradually moves away and the world is bright and normal again. A new normal, but normal.

Copyright © August 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Tuesday, August 8, 2017

Rest in Peace, Rhinestone Cowboy

At the National Alzheimer’s Dinner in 2013, my mom and I were seated at a table near the stage. Our table was on the outside edge near some curtains.

“Rhinestone Cowboy” cued up and everyone began to clap in time to the music. Suddenly, from behind the curtain, several people emerged. All eyes were on Glen Campbell as he brushed past us smiling and waving his way toward the stage.

Filmmakers James Keach and Trevor were working on the documentary I’ll Be Me, the story of Glen’s Alzheimer’s journey. They were on hand to present the Sargent and Eunice Shriver Profiles in Dignity Award to Glen Campbell. Glen was a truly deserving recipient. His “Good-Bye Tour” and the documentary were unselfish ways of bringing a new level of awareness to a vast audience.

Glen seemed humbled by the award. His voice broke with emotion when he said, “Everyone’s been so good to me throughout my years as a musician. Thank you for helping me and my family.”

We sang “Happy Birthday” to the country music star and helped him celebrate his 77th birthday. I brushed away tears as my heart broke for the years he would be facing.

After the program, Glen posed to have his photo taken with many of the ladies, including my mom. He was charming and sweet, but I could see his hesitation and hear his halting words as he struggled to adapt to his new reality.

His daughter, Ashley, testified in front of a congressional hearing on Alzheimer’s. Advocates wearing purple Alzheimer’s sashes, packed the room. Ashley’s emotional testimony explained the changes in her relationship with her dad. She said it was hard for him to recall her name. Their times fishing together no longer lived in his memories.

Two years after the forum, I saw the documentary, I’ll Be Me. My impressions as written in a 2015 blog post:

It brought back memories of Jim’s loss of communication and musical skills. At least only family witnessed Jim’s problems and not a paying audience.

The Campbell family told of their struggles to make sure they walked the fine line between the cathartic benefits of Glen performing and being vigilant of him embarrassing himself. Audiences were tolerant. If he played the same song twice, so what? At least they got to see him perform.

Campbell’s physician felt that performing on his “Goodbye Tour,” doing what Glen loved, helped him maintain the ability to function longer. Sometimes his daughter, Ashley, had to tell her dad the correct key for certain songs. During their “dueling” instruments, her with a banjo, him with his guitar, she admitted that sometimes he didn’t always follow along. Glen relied heavily on Teleprompters to remind him of the words to songs he had sung for years.

When watching old family films, Glen asked, “Who’s that?” His wife, Kim, gently supplied the pertinent information: “It’s you, honey,” or “That’s your first wife,” or “It’s your oldest daughter.”

The film shows the relentless progression of Alzheimer’s disease. By the time of his final performance on stage, Glen did not know it was his last performance.  Cal Campbell said that when his dad performed, “He actually becomes himself again.”

The story ended with the recording session of “I’m Not Going to Miss You.” At this point, Glen is already fading away but his eyes sparkle when he finally gets into the song. This song really tugs at the heartstrings. The idea stemmed from Campbell’s remark that he couldn’t figure out why everyone was so worried about him having Alzheimer’s. He said, “It’s not like I’m going to miss anyone, anyway.”

Glen Campbell’s Alzheimer’s story was heartrending and, oh, so familiar to millions who have lived a similar story. Today, August 8, 2017, Glen Campbell ended his courageous battle with Alzheimer’s, and the Rhinestone Cowboy rode to his final horizon.

Copyright © August 2017 by L.S. Fisher
http://earlyonset.blogspot.com
#ENDALZ #GoJimsTeam

Monday, July 31, 2017

Beautiful Feet Carrying the Message

Sunday morning I took my usual seat for early church services. A woman came in and sat at the end of the same row. When the pastor gave us an opportunity to greet each other, I introduced myself to her, and she told me her name.

I recognized Laura's name as one I had seen on the Sedalia walk site. “Are you involved with the Walk to End Alzheimer’s?” I asked.

“Yes, I am!” she said.

We had a brief discussion about walk committee meetings, and then it was time for services to resume. The sermon was based on Romans 10:15 (NLT) “...How beautiful are the feet of messengers who bring good news!”

I know that we may not see physical beauty when we look at our calloused feet, maybe marred with hammertoes, blisters, corns, or bunions . What we can imagine is the power of these “beautiful” feet to bring about change.  

Each year we have about 400 pairs of beautiful feet spreading the not-so-good news about Alzheimer’s disease. Many of the participants in the Sedalia walk have a loved one living with Alzheimer’s. Others, like Jim’s Team, walk to honor someone lost to the disease. Many members of Jim’s Team walk to honor other loved ones who have, or had, Alzheimer’s.

All these beautiful feet are boots on the ground in the battle to turn Alzheimer’s into a national priority. The walkers’ beautiful feet raise awareness and funds to help families coping with Alzheimer’s find resources to help them throughout the difficult journey.

At the same time, the Walk to End Alzheimer’s helps the Alzheimer’s Association fund research grants that explore new avenues toward finding a cure. New approaches, coupled with prior research, will hopefully build the momentum to find what has thus far been an elusive cure.

Alzheimer’s volunteers are a special breed of focused individuals. It’s kind of scary to me to realize how different my life would be if I had not taken that first step to become involved with the Walk to End Alzheimer’s. Because of my volunteer work, I’ve gained dozens of amazing friends.

Perhaps it was merely a coincidence that Laura sat close to me Sunday morning. Or maybe, it was divine intervention to bring together two warriors to fight the Alzheimer’s enemy.

As we left church on that beautiful day, we paused to talk.

“There’s a woman on another team in my line dancing class. You should meet her too,” I said. I hadn’t realized who she was until our instructor Ruth had encouraged the class to participate in the Walk to End Alzheimer’s. She told me she was already walking. In fact, I had just announced her team, Poppy’s Posse, on the radio as the current top fund-raising team.

“I’d like to go to line dancing,” she said.

“You should join us. We have a lot of fun! Our instructor Ruth is a joy to be around.”

While we talked, people from the early services were leaving, and others were streaming in for the next services.

I told Laura the days and time of our three line dancing classes, and while we were talking, Ruth, joined us.

“I heard some women were talking about line dancing.” Ruth explained that the young man greeting people at the door had gone to the bookstore where she was volunteering to let her know some women were talking about line dancing. Ruth invited Laura to join us for line dancing exercise class.

Sunday was a day of connections with a dear friend and a new friend, both with beautiful feet to spread the good news that we are on the MOVE to End  Alzheimer’s.

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

Sunday, July 23, 2017

Use It or Lose It


For the first two years of our marriage, Harold and I drank our morning juice out of mustard-colored Tupperware juice glasses. One day, I noticed some stunning crystal goblets shoved to the back of the cabinet. I knew they had never been used because they still had the stickers on them. Now, wouldn’t my tomato juice and his apple juice look so much better in those glasses?

After using the glasses about six months, I managed to break the stem off one of them. I threw it away and took another one down. A few days later, I told Harold, “I broke one of the juice glasses.”

He shook his head and said, “I bet I’ve had those glasses twenty years.”

“Well, look at it this way,” I, the optimist, said, “since we started using them for juice glasses, you’ve gotten more pleasure out of them than you did during the entire twenty years you had them.” Really? How much good is something if you never use it?

Anyway, this little incident caused me to think about the expression, “use it, or lose it.” That expression can be taken a couple of different ways. Like so many people my age, I’ve accumulated so much stuff that I don’t use a lot of it. I basically flunked out of minimalist class because I couldn’t seem to “lose” enough stuff.

There is another way that use it or lose it applies to our health. Lack of exercise is damaging to our minds and bodies. Oh, sure, we all know about going to the gym to exercise, but do we think about exercising our brains?

We lose a certain amount of physical and mental agility as we age. When we exercise our bodies, it helps keep us physically agile. When I was much younger, I went to a wellness seminar. One woman said, “I walk so that I am able to walk.” She had severe arthritis and said that unless she kept moving, she wouldn’t be able to.

When I don’t feel like moving, I am most motivated to do it. A few days ago, Carolyn and I were walking into exercise line dancing class and we were talking about our aches and pains. But we were both there and ready to dance. Amazingly, I felt better by the end of class.

Mental agility works the same way. Use it or lose it. Keeping your mind active doesn’t guarantee that you won’t develop Alzheimer’s, but it may reduce your risk.

We all know how to exercise our bodies, although we may not do it. You might be a little puzzled as to how to exercise your brain. As with physical exercise, if mental exercise isn’t fun, you won’t do it!

To decide on the brain exercise that will work for you, think about the things you always wanted to do, but never seemed to find the time or the motivation to follow through.

Here are a few ideas:
1.      Take a class. Have you fallen behind on technology? Check out online or community college classes. Many colleges offer short courses on a variety of interests.
2.      Learn a new skill or hobby. After going to a few “painting parties” my sister discovered she had an artist’s eye. She’s learning and expanding her skill canvas by canvas. I decided to try to learn to play the ukulele. I may never be great at it, but I have a lot of fun and at least my dog enjoys hearing me play.
3.      Read, read, read. Read for pleasure and for learning. With a library card, reading must be the least expensive pastime ever! I don’t even need to spend gas money to read. I browse hundreds of library books online and check them out on my Kindle.
4.      Working puzzles is another inexpensive hobby. I buy crossword puzzle books and Sudoku books at the dollar store. I also work the puzzles in the newspaper. Heck, I’ve already paid for the paper, so the puzzles are free. A good way for me to ease into the day is to work on a puzzle while drinking my first cup of coffee.

Exercising your brain is a way to lower your risk of Alzheimer’s disease and enrich your life at the same time. Make your own list filled with things you enjoy.

My goal is to have as much mental agility throughout my lifetime as my ninety-year-old mother has. The only way to reach that goal is to think, plan, and take action to use my brain every day.   

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