Sunday, August 30, 2015

Just Like the Good Old Days

A couple of days ago, Harold popped a big bowl of popcorn and we settled in front of the T.V. to watch the old episodes of Castle recorded on our DVR. I pushed the “on” button, and nothing happened. After pushing on/off/select numerous times, the most I could get on the T.V. was “no signal.” Harold tried to reset the satellite receiver without success so it was time to call DISH. After a half hour of trying this, selecting that, and retrying to acquire a signal, a heavily accented voice said they would be mailing us a new receiver.

After some tough negotiations, Harold convinced them they needed to send a repair person to come out and set up the new receiver. They will be here Tuesday. So without any other kind of reception, we are without a T.V.

Being without a T.V. isn’t so bad. It reminds me of the good old days when we didn’t watch T.V. in the summer because all programs were reruns. So what did we do without all the extensive programming on T.V.? Well, we read books and spent time outside. Thank goodness, I have a book on my Kindle to read and I went a little overboard at Books-A-Million while I was in Branson.

The spending time outside has worked well. Friday, I spent the day with my mom and sister. We visited, ate at Country Kitchen. I didn’t miss T.V. at all. The real acid test was Saturday. As it turned out, my major complaint with Saturday was that there wasn’t enough time to take a break. We were up early and fixed a big breakfast—different from our routine of coffee and bagel in front of the T.V.  After a day of mowing, yard work, and going to town, the day was over, and I hadn’t gotten a single thing marked off my personal task list. Determined to at least get one thing checked off, I worked until nearly midnight. T.V.? What’s that?

This morning, I dragged myself out of bed for early church services. I wore one of my purple Alzheimer’s shirts and picked up a copy of Broken Road: Navigating the Alzheimer’s Labyrinth to give to Pastor Jim for being the inspiration for some of my blog posts.

As I walked into the sanctuary, they had me choose a rock. “You’ll need it during the service,” was the explanation. I was hopeful we weren’t going to “stone” anyone for his or her transgressions.

I go to contemporary services at the Celebration Center. We have a band and the lyrics to our music is on a screen.  One of our pastors, Nick, brought a message about the traditional Methodist Hymnal and the “rules” for singing the songs. The rules included learning the tunes, singing them exactly as they are written, everyone should sing (take up your cross and bear it, if necessary), sing lustfully (not as half-dead or asleep), yet modestly without destroying the harmony, keep time and sing with the leading voices, and most of all sing spiritually.

Hymnals have the traditional hymns that we sang back in the “good old days.” After the message from 1 Samuel about a stone he called Ebenezer, we sang a traditional hymn, “Come, Thou Fount of Every Blessing.”  The women sang the melody and the men repeated a line. It was really quite beautiful and I think John Wesley would have been proud.

One of the lines in the song is, “Here I raise my Ebenezer.” As we sang the song, we came forward in the same manner as communion and placed our rocks on the altar. It was a touching moment that made me feel like I’d taken a step back to another, simpler time.

Maybe the “good old days” weren’t always good, but something about them tugs at the heart. It’s the place of our memories and the roots of our traditions. Those were days when we were young and full of hope.

Taking a step back for a few days is a welcome relief. Soon, very soon, I’ll be ready to return to watching my favorite programs, but for now—I’m doing just fine without T.V.

Copyright © August 2015 by L.S. Fisher
http://earlyonset.blogspot

Wednesday, August 26, 2015

Like a Bridge Over Troubled Waters

Rob popped in another video to dub. Christmas, 1991. Jim and his brother Billy began to sing “Bridge Over Troubled Waters” in their close harmony. My heart stopped to hear his voice, see him on the somewhat grainy film—standing straight, playing his classic Fender guitar. video

Watching the home videos made me laugh and made me cry. Jim narrated as he filmed everything around him for “posterity.” No event was too small or insignificant. He chose who he was making the video for and encouraged everyone to say “hi” to that person. One tape was for his brother Bob, “and Barbara, too,” he added when he remembered he hadn’t mentioned her. A thanksgiving tape at my mom’s house was specifically for my brother Jimmy who was in the Navy in California.

“Did Dad ever send these videos to the people he made them for?” Rob asked me.

“No. That’s why we still have them,” I said. One time after he became confused, Jim made an audiotape for his cousin Leroy. His mom saw him walk out to the mailbox and raise the flag. Curious, she went out to see what he was mailing. Inside the mailbox was a cassette tape with “for Leroy” written on it. No postage. No wrapping. No address.

Jim’s personality and humor uplifted the videos to an experience. Most of Jim’s family loved the camera. His uncles and cousins would ham it up in standup comedian mode. Uncle Jewel described his many personalities and mashed his face flat in one video. Jim interviewed his cousin Buddy about the lady ranger bawling him out over not coming to a complete stop at the campground’s exit. “Don’t they have stop signs in Missouri?” Jim asked.

The highlights of the old home videos are family gatherings. Houses and yards overflowed with family. Guitars, fiddles, microphones, and amplifiers were dragged out for impromptu family concerts. Everyone had their “special” songs to sing and requests rang out from the audience for their favorites.

I loved being able to see and hear Jim tell his corny jokes, tall tales, but most of all, I loved to hear him sing. I watched the tapes of him singing through blurred eyes. He and his brother Billy sang several songs, and the song “Bridge Over Troubled Waters” was almost prophetic. It told of comfort, friends, dreams, and having that person to hold you up when times are rough. More important it told the kind of man Jim was. He was always on my side. He was my husband, my friend, my bridge. He encouraged me to shine.

In addition to stealing Jim’s musical talent, dementia stole his voice. It seems like a small miracle to hear his voice after all the years of silence. When the darkness of dementia fell he was no longer able to dry my tears or be my bridge. I had to find my own way back into the light.

It was almost twenty years ago that we learned the hard truth of dementia. We made the most of the time we had until the journey ended April 18, 2005 when Jim was 59 years old. Thursday, August 27, would have been Jim’s 70th birthday. It would have been a day of celebration, but now it is a time of remembrance. And gratitude for the adventures we shared.

Jim is gone from our world, but his essence lives on the videotapes and in his children and grandchildren. Last week when Whitney pulled out her ukulele, her mother said, “Your Grandpa could have taught you so much.” Just like her grandpa, she is collecting different instruments to play. When I see Whitney’s short videos online, it makes me think that her Grandpa Jim would have been capturing every moment he could for “posterity.”

Music and family were the great loves of Jim’s life. We have those magical memories stored in our hearts and on the old videotapes.

Copyright © August 2015 by L.S. Fisher
http://earlyonset.blogspot

Tuesday, August 18, 2015

Walk the Walk, Talk the Talk

Jessica Snell, Sedalia Walk to End Alzheimer’s co-chair, and I were at the radio station Tuesday morning to talk about the Walk to End Alzheimer’s. We were armed with the names of our sponsors and teams, goals, and statistics. It’s always a pleasure to be on the air with Doug, and even better to record the program for broadcast the next day. When you are on the air live, you just have to go with it, but when the program is recorded and your tongue gets tangled you get “overs.” We all need overs from time to time.

I’ve been involved with the Walk since 1998 and during that time I’ve seen a lot of changes. The first year, I raised $400 and Jim and I walked with a handful of people. For the next five years, I was the Coordinator, or Walk Chair, of our local Memory Walk. At that time our logo was the word “Alzheimer’s” with the “H” being two people, leaning. The Alzheimer’s Association was well-known as “Someone to lean on.” The Walk began to draw hundreds of walkers.

For the next five years, Shelley Spinner coordinated our Walk and I backed off the committee to make sure everyone saw her as the leader of the group. She did a great job of keeping the Walk exciting and fresh. I was able to concentrate on being captain of Jim’s Team. Following her, Lisa Hayworth led the Walk committee for two years. Lisa had no experience or help. At that time, my sister-in-law Ginger and I went back on the committee and we’ve remained on it since then helping Sheila Ream.

Some things change and some remain the same. The Alzheimer’s Association changed the logo to the current one and “Memory Walk” to Walk to End Alzheimer’s. Some of the format has changed. The Garden of Hope ceremony has been added and it encompasses the different ways that Alzheimer’s affects us. Our local chapter has changed names from Mid-Missouri to Greater Missouri, merged with the Southwest Chapter, and became a national chapter. What does this all mean? We still have Chapter offices where they were located previously and the Alzheimer’s Association still provides the personal service that helped me throughout the years when dementia ruled our lives.

Another change I’ve seen over the years is how people have become more knowledgeable about the disease. When I first approached area businesses in 1999 for corporate sponsorship, no one seemed to know much about Alzheimer’s. Now, everyone seems to know a few basics about Alzheimer’s. A lot of credit goes to the Alzheimer’s Association for raising public awareness.

The Walk is about people. It is a time to show care and concern for those with the disease and their loved ones. It is a time when everyone puts aside their differences and embraces the opportunity to support their friends, neighbors, and relatives who are dealing with Alzheimer’s. We have teams with different names, but in essence, we are all one team. Competition is fierce, but friendly. I celebrate the teams that raise more than our team.

When I was coordinating the Sedalia Walk, I became friends with Ted Distler who coordinated the Jefferson City Walk. We “trash talked” each other all the time about which town was going to raise more money. In truth, it was all in competitive fun, and we supported each other at fundraisers. Ted would drive to Sedalia for our Dance to Remember, and I’d drive to Jefferson City for their Chicken Dinner. We had the same connection to the disease and the same passion for doing what we could to help other care partners and persons with dementia.

What people don’t understand is Walk to End Alzheimer’s is a fun event. Yes, it is sobering at times when you hear the stories of the participants, and the flower ceremony is touching, but knowing that you are doing your part is heart-lifting. Smiles, laughter, and love are the order of the day. You don’t want to miss it or you’ll have to wait another year. From babies in strollers to seniors in wheelchairs, we lend support and lean on each other to end Alzheimer’s.

Copyright © August 2015 by L.S. Fisher
http://earlyonset.blogspot

Saturday, August 1, 2015

Once in a Blue Moon

Photo by L.S. Fisher, color enhanced
There’s been a lot of talk about blue moons lately.

“Why is the moon going to turn blue?” my granddaughter asked a few weeks ago when we were talking about the upcoming blue moon. Her mom explained that a “blue” moon had nothing to do with color and meant two full moons occur in one month.

We just had a blue moon—at least according to some sources, but in our time of too much information, some purists disagree with this definition. Up until 1946, a blue moon was the third full moon in an astronomical season with four full moons. The confusion came about when James Pruett, a hobby astronomer, published an article that said a second full moon in one month was a blue moon. Although the mistake was noted and refuted, the information had already spread worldwide and became the accepted definition of a blue moon.

Let’s face it. It’s much easier to notice a second moon in one month than to determine how many full moons occur in a season.  According to the original definition of a blue moon, the one we just celebrated was not, in fact, a blue moon. One that we will ignore, most likely, will occur May 21, 2016—the third full moon in an astronomical season. But we will easily notice the one January 31, 2018, the second full moon in the month.

By either definition, a blue moon doesn’t occur too often, and the expression, “once in a blue moon” means something that happens rarely. Some reasons for those “once in a blue moon” occurrences:

Something we don’t like to do and put off. In this category are chores like washing windows, cleaning the garage, and pulling weeds. Tedious, time-consuming tasks, that always seem better left for another day. Same goes for uncomfortable, routine medical tests like mammograms, colonoscopies or endoscopies. Procrastination, indeed!

We’ve gotten out of the habit. We haven’t gone to church for a while, so Sunday seems like the perfect day to sleep late. After missing two or three club or committee meetings we are out of the loop, and choose to leave it that way.

Not enough time. Life is so busy now that we don’t have time to phone a friend much less visit a loved one with Alzheimer’s in the nursing home. Busy, busy, busy. That’s how most of us live now. We’re so busy being busy that we miss out on the important things in life.

Maybe in reality, it is fine for some things to happen once in a blue moon but others shouldn’t. It’s really up to each of us to decide what goes into which category—once in a blue moon or much more frequently. Just living isn’t nearly as important as having a life.  

In my world, things that happen once in a blue moon, or rarely, could be considered somewhat common. I’m okay with that most of the time, but sometimes I have regrets that I didn’t make that phone call or visit a loved one. Maybe, at least once in a blue moon, I should just take time to lounge in a lawn chair in the shade of the oak tree, sip a mint julep, and read a trashy novel.

Copyright © August 2015 by L.S. Fisher
http://earlyonset.blogspot

Tuesday, July 21, 2015

New Treatments for Brain Diseases

Alzheimer’s is a global problem and scientist from around the world share information in a unified effort to find an effective treatment or cure for Alzheimer’s disease. Representing 65 countries, more than 4,000 scientists have gathered in Washington D.C. for the Alzheimer’s Association International Conference 2015.

One of the exciting developments of this year’s conference is a report that new drugs have yielded promising early results for treatment of several brain diseases. Finding the key to effectively treating Alzheimer’s disease may unlock the mystery of other neurodegenerative diseases. Scientists have found common components of several brain diseases, including Alzheimer’s, Parkinson’s, and Lewy Body dementia.

What do these diseases have in common? They all cause brain cell death because of a change in the shape of a protein. This protein can become toxic and affects the nerve cells or synapses. The proteins that affect Alzheimer’s disease are beta-amyloid and tau. Lewy bodies are the protein associated with Parkinson’s and Lewy Body dementia. Misfolded proteins bind to other proteins and form large aggregates.

What are some of the drugs being tested? Richard Fisher, PhD, NeuroPhage Pharmaceuticals, Cambridge, MA, and a group of colleagues are researching NPT088. This drug has been tested on animal models with Parkinson’s and Alzheimer’s. In most cases it reduced levels of amyloid beta, tau, and alpha-synuclein (the main component of Lewy bodies). Animal models showed improved memory. Clinical trials are planned for 2016.

Another new drug, TRV101, is being tested in Toronto, ON, Canada by Treventis Corporation. This group used computer models to screen more than 11 million compounds to find ones that could prevent toxic proteins. In test tubes TRV 101 is capable of allowing natural clearing mechanisms to remove protein aggregates. Clearing toxic proteins should improve cognitive function. This research has moved to animal testing.

Alzheimer’s is a complicated disease and a cure has been elusive. Effective treatment is more likely to be a cocktail of drugs, rather than a single medication. This is similar to how HIV/AIDs and other disorders are treated.

As with other major diseases, lifestyle changes are part of the treatment for Alzheimer’s. Researchers are optimistic that Alzheimer’s risk has declined for recent generations due to better cardiovascular care, blood pressure management, controlling diabetes and realizing the importance of physical activity and a healthy diet.

The great thing about lifestyle changes, you don’t have to wait for a drug to come down the pipeline, you can just jump in and begin! Right now improving a healthy diet is an easy fix with fresh vegetables from my garden. This is one time of the year that something that tastes good, homegrown tomatoes, is good for me.

People today are more socially active. At least I know I am. Reading the news on my smart phone or having articles delivered to my in-box keeps my mind active. For fun, I throw in a few crossword puzzles or read a book.

Between research and common sense practices, we are moving in the right direction to make Alzheimer’s a distant memory.

Copyright © July 2015 by L.S. Fisher



Tuesday, July 7, 2015

Anywhere But Here

Serial stowaway, sixty-three-year-old Marilyn Hartman, was caught at O’Hare Airport trying to board a flight without a ticket. While some people are afraid of flying, Marilyn seems to be obsessed with the idea. She’s been arrested several times at airports for trying to board without a ticket.

Oddly enough, Ms. Hartman had a valid ticket the day before her arrest, but caused such a disturbance that she was escorted off the plane. I’m beginning to think she wants to be wherever she isn’t, including on a plane. She’s been arrested on the west coast, Phoenix, and more recently in Chicago—at both O-Hare and Midway. She once remarked to reporters that airports were safer than living on the streets.
  
Why does she keep trying to stowaway on airplanes when it leads to jail time? She said, “Even smart people do stupid things.” Well, that statement is entirely true, but I believe she can’t help herself because she wants to be somewhere besides “here,” wherever here may be.

Maybe all of us have a little of this compulsion to be somewhere else. Who hasn’t spent a tough day at the job and had a strong urge to be at a favorite vacations spot? This lady has just carried it to an entirely different level.

When we’re young, we long to grow up. Once we are grownups, we want the carefree days of our youth. Time and space can be our friend or our enemy.

People with Alzheimer’s often want to be in a different place. They pace. They want to go home, even though they are at home. They want to be someplace else. Anywhere but where they are.

Wandering is a common problem with Alzheimer’s. It’s dangerous for the person and worrisome for the family. Think about how confusing and strange their world is, and it’s easier to understand why they want to find what they’ve lost. Their shattered memory may tell them they live in a certain house, even though they once knew that it had been sold or torn down.

I knew a man with Alzheimer’s who wandered off frequently and walked across town to the house where once he had lived with his first wife. She still lived there, and when he showed up, she phoned his current wife to come and get him. She offered him coffee, or breakfast, while they waited.

When life gets tough, we often want to place distance between where we actually are and where we theoretically could be. It’s fight or flight. While most of us fight, a few of us flee.

Maybe Ms. Hartman really is smart and finds jail to be safer than the streets. It probably doesn’t hurt to have three guaranteed meals a day. I believe she knows her chances of boarding without a “ticket to ride” are slim. I would say slim to none, but she managed to fly from San Jose to Los Angeles without a ticket.

Some people try to run away from their problems, but could Ms. Hartman be trying to run away from herself? When she is released from jail, we’ll be hearing about her again. And again. A serial stowaway headed for nowhere, or anywhere but where she is.

Copyright © July 2015 by L.S. Fisher

Monday, June 29, 2015

Glen Campbell: I’ll Be Me

Last night I watched  Glen Campbell…I’ll Be Me on CNN. The film was released in 2014 and documents Glen’s Alzheimer’s journey.

I heard about the documentary a few years ago at the Alzheimer’s Advocacy Forum. My mom went to D.C. with me in 2013 when Glen Campbell was there. He fairly oozed charm and posed to have his photo taken with many of the ladies, including my mom. 

I’ll Be Me was painful for me to watch. 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 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 what key to play certain songs in. 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.

During his doctor visits, I heard some of the same questions with similar answers during Jim’s visits. When asked questions, he couldn’t answer, Campbell said, “I don’t worry about those things.” The doctor asked him who the first president of the United States was and Campbell replied, “My goodness, I don’t know. I don’t use that very much lately.” Jim would typically say, “I have no idea,” in a tone that indicated he didn’t care to know either.

Ashley testified in front of a congressional hearing on Alzheimer’s. Advocates in D.C. for the Alzheimer’s Advocacy Forum, wearing purple 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 lives in his memories.

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.”

Jim once looked at photos from our honeymoon. I pointed at a photo of me, and playfully said, “Do you know who that is?” His answer, of course, was, “I have no idea.” The devil is in the details. Some of the most hurtful moments are when you realize what had been memories shared, become your memories alone.

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.”

Kim finally placed Glenn in a home where he could get twenty-four hour care. His is reportedly happy and healthy. He is losing his communication skills and doesn’t recognize many of his visitors.

As is often the case, family is feuding. Two of his children by a previous marriage have taken legal action against Kim. Family is often at odds about how to care for their loved one. I’ve seen families torn apart at a time they should be pulling together. Each person has to come to acceptance in their own way and on their personal time schedule.

Glen Campbell’s Alzheimer’s story is heartrending and, oh, so familiar to millions who have lived a similar story. 

Copyright © June 2015 by L.S. Fisher

Saturday, June 20, 2015

What Survivors?

I’ve been seeing images of a “Limited Edition” T-shirt for Alzheimer’s Awareness. The shirt says, “Supporting the Fighters, Admiring the Survivors, Honoring the Taken, And Never Giving Up Hope, Alzheimer’s Awareness.” People seemed to be excited about buying these T-shirts.

I don’t want to burst the bubble of enthusiasm, but this shirt certainly does not promote Alzheimer’s awareness. At our annual Walk to End Alzheimer’s, we cannot have a victory lap for our survivors. The cold hard fact is that Alzheimer’s leaves no survivors.

Alzheimer’s is the sixth leading cause of death in the United States and the only one in the top ten that cannot be prevented, cured, or even slowed. Twenty million Americans understand this harsh reality: five million with the disease and their fifteen million unpaid caregivers.

Alzheimer’s does have fighters—millions of them. We have warriors with the disease and care partners who raise awareness and dollars so that we can have survivors someday. These brave people share their stories, their struggles, their highs and lows as they live life to the fullest. They celebrate each moment of joy and refuse to cave in to despair.

Several years ago, I met a forty-year-old woman in Washington, D.C., who had early onset Alzheimer’s. As we told our personal stories to our senators and representative, she said, “I know it’s too late for me, but I want a cure for my children. I don’t want them to have to go through this.” She is gone and has been for several years, but we continue her fight to make her wishes come true.

Family members and loved ones honor the taken. Jim was taken before his sixtieth birthday. We honor the loved ones we’ve lost each time we join a Walk to End Alzheimer’s. We honor them by becoming advocates, or “voices,” for Alzheimer’s research and hounding legislators to push for increased funding.

Advocacy makes a difference! This week we received word that due to the relentless dedication of Alzheimer’s advocates, increased research funding is making its way through the legislative process. The House Labor, Health and Human Services Appropriations Subcommittee has approved an additional $300 million in Alzheimer’s research.

Harry Johns, Alzheimer’s Association CEO said, “Should this increase become law, it will be the largest annual increase ever in federal Alzheimer’s research funding. Following today’s actions, the full House Appropriations Committee is expected to consider this legislation next week. We also anticipate that the Senate will begin to move their own version of the FY16 Labor-HHS bill next week.”  

Advocates will never give up hope! The National Plan to Address Alzheimer’s Disease is to find a cure or effective treatment by 2025. With adequate funding to support the bright scientific minds at work on a cure, our goal is within reach.

When our work is done, I’ll be at the front of the line to buy a T-shirt that has “Admire the survivors” on it. Until then, we need to keep the momentum going and stick to the Plan to find the elusive cure and/or effective treatment for Alzheimer’s no later than 2025, but hopefully much, much sooner.  
      
Copyright © June 2015 by L.S. Fisher
http://earlyonset.blogspot