Advocates and Avocados

David Hyde Pierce, who has been a champion for Alzheimer’s began this year’s forum by joking about how the word advocate in Spanish is abogado, which sounds like “avocado.” It was his observation that “Avocadoes are like Alzheimer’s advocates because they are irresistible, and they have big nuts.” About Alzheimer’s disease, David said, “It’s not going to stop until we stop it.” Then, the most unusual call to action I’ve heard in the thirteen forums I’ve attended, “Avacados, let’s roll!”

Of course, we all laughed at David Hyde Pierce’s jokes because, let’s face it, he knows how to deliver a punch line. Jokes aside, just like us, he is here on a mission—flying back and forth from New York to take part in this forum. Because, like the more than 900 advocates packed into the large ballroom, he has a personal stake in finding a cure for this disease. He’s met Alzheimer’s and knows what a cruel disease it is.

The conference, as usual, was a whirlwind of activities. Dr. Collins, director of NIH, announced that in a unique step, NIH has designated $40 million of its 2013 budget for Alzheimer’s. In addition, an indication of the nation’s attention to the underfunded Alzheimer’s research funds, the president’s 2014 budget allocates $80 million to research.

My Mom and Glen Campbell

Glen Campbell joined us for the National Alzheimer’s Dinner. He entered the room a few feet from me, but I couldn’t get my camera turned on in time to get a picture. After dinner, I managed to work my way to the front of the crowd to get a picture of him and my mom. More important than the photo ops was the presentation of the Sargent and Eunice Shriver Profiles in Courage Award to Glen Campbell and his family. The “Rhinestone Cowboy” strode to the stage and accepted his award with humility that belied his outer showmanship.

After several other deserving awards, the Outstanding Advocate of the Year Award was presented to Dr. Ron Grant who has early onset Alzheimer’s. He thanked God and the Oklahoma/Arkansas Chapter for giving him the courage to face the disease. He said, “We live in the greatest nation on the planet, but I have to ask—in such a great nation, how many more families are going to have to suffer the devastation of this disease?” Grant concluded with a break in his voice, “How many more of us are going to have to die before we stand up and say enough?”

That, I would say, is the most important question of the entire forum. How many precious lives have been lost to the costliest disease in the United States? Officially, 83,437 died from Alzheimer’s in 2010. Other health conditions are often listed as the cause of death although the reason for the condition is caused by Alzheimer’s. In 2013, an estimated 450,000 will die with Alzheimer’s.

 We ended the conference part of the forum armed with statistics and tactics, but the most important element of our visits to the hill would be the power of our personal stories. As this abogado “avocado” prepared to charge the hill, I left the room with Dr. Grant’s haunting question echoing in my brain, “how many?”

Copyright by L.S. Fisher, April 2013

http://earlyonset.blogspot.com

April Rain, Storms, and Hopeful Sunshine

April is a kaleidoscope month with beautiful patterns and disturbing images. Rain and clouds bring sad thoughts. Storms can light the skies and simultaneously startle us with heart stopping thunder, wind, hail, and tornadoes. Along with spring comes a period of renewed hope when dazzling sunshine warms the ground and flowers, mushrooms, and foliage cover the earth with a lush blanket of beauty.

April is a month of memories for me. It was on a hot day in April when Jim left his body behind and went to a place where he could be whole again. April rain falls in my heart when I allow myself to remember those days of April when he was ready to leave, but I wasn’t ready to let go.

Perhaps, in lieu of sad thoughts I’ve packed April with activities. This month is full of conferences, meetings, and my annual trip to Washington DC to advocate for Alzheimer’s.

Saturday, I drove to Kansas City for an inspirational breakfast and spent the morning with some amazing women. We each introduced ourselves and talked about our first job and the most innovative thing in the workplace. We shared laughter and memories of those jobs and discussed how far the business world has advanced over the years.

Was it the talk of old times that turned my thoughts to the past? Or was it just that this is April? The rush of memories expressed themselves with April rain flowing from my eyes and I made the decision to stop at the cemetery on my way home.

I pulled off the interstate when I saw the sign for the Missouri Veterans Cemetery at Higginsville. I stopped at Walmart hoping to find some flowers and instead settled for a colorful plant in a pot decorated with two birds facing each other. As I left Walmart, I drove through McDonald’s and bought a cheeseburger and fries.

A few miles out of town, I pulled through the gate into the cemetery and drove to the columbarium. I had the peaceful, quiet cemetery all to myself.

I shared my water with the plant and placed it beneath Jim’s memorial. I sat on a bench and ate my lunch while I reflected on our life together. Jim would have looked forward to my impending retirement and trips to see family and friends. He would have wanted to spend time animal watching in the Rocky Mountains he grew to love so much. He would have been so proud of our children and grandchildren. He would have loved showing the grandkids his childhood places and sharing his stories and memories. That was what made Jim, Jim. We would have spent time having those soul-searching conversations about life, death, and the time between. Time. We ran out of it.

I sat on the bench reminiscing when I heard a sound behind me, breaking the silence. I turned to see…nothing but the committal shelter, with the flags flying high in front of it. I heard the noise again and realized it was the flags flapping in the breeze.

Jim’s physical presence has been gone for eight years. Not a day goes by without thoughts of Jim. He is imprinted on my heart where he’ll always share a part of my being. Was he perfect? No. But in many ways, he was perfect for me, and we seemed to complete each other.

After my time alone with Jim and our memories, I drove away. The tears vanished, and I thought about how fortunate my life has been. I’ve learned to be independent and comfortable in my skin. Loneliness and sadness visit only occasionally—as unexpected and quick as the lightening of an April storm.

I have lived a full and rich life that began on a December day in Hawaii when I married Jim. Our time together began on an April day when he returned from Vietnam and ended on another April day thirty-five years later.

Our time together ended, but life goes on for me. I plan to enjoy many years of fun, laughter, and joy. Family and friends are the essence of life, and they provide circles of love without beginning or end.

Copyright © April 2013 by L.S. Fisher

Earlyonset.blogspot.com

What's in a Name?

At Easter services, we enjoyed a parade of banners bearing different names for Jesus. If you think about it, many names are used in the Bible…Lord, Redeemer, Savior, Christ, The Word, Alpha and Omega…just to name a few.

During the sermon, Pastor Jim mentioned that according to the census, the most common women’s names are Mary, Patricia, and Linda. I really didn’t need the census to know Linda is a common name, especially for those of us born in the Fifties and early Sixties. I went to a small school and throughout all my school years, our class had five girls named Linda. One year, to avoid confusion, the teacher called all five of us by our middle names.

“Why did you name me Linda?” I asked my mom.

“Because it’s such a beautiful name, and I never knew anyone named Linda,” she said. Well, there must have been a lot of mommas with the same mindset.

If there was one thing I hated worse than my first name, it was my middle name. That probably came from my brothers making fun of my middle name, Sue, since it sounded similar to how the hogs were called. I’m not kidding about that.

I have a friend that I’ve known for forty years that calls me Linda Lou. The funny thing is that I’m positive he really thinks that is my name. I’ve never told him any different, and now his wife calls me Linda Lou.

“Why didn’t you name me Ellen?” I asked my mom—many, many times. I wouldn’t have even minded Linda Ellen because I would have used my middle name for sure. My mom and grandmother shared the middle name Ellen, and I loved that name. I envied that name. Neither of them used it anymore than I used my middle name.

They say a rose by any other name would smell just as sweet, but when it comes to human nature, our names can have an effect on our lives. Johnny Cash sang a song about a “Boy named Sue” and the hardships that created on a boy growing up with a girl’s name. Of course, his dad name him Sue so that he would grow up tough. And, at least in the song, the name choice made a difference.

Some people’s names are immortalized when a disease is named after them, including several that affect the brain. Alzheimer’s is named after Alois Alzheimer who discovered the plaques and tangles that are the hallmarks of the disease. Another dementia, Pick’s disease is named after Arnold Pick, a professor of psychiatry from Prague, who first described the disease. Lewy Body dementia is named after a German scientist Friederich Lewy, who studied at the Alois Alzheimer’s laboratory in Munich. Hans Creutzfieldt and Alfons Jakob studied at the same laboratory during the time Pick was there. They, of course, were the first to describe Creutzfeldt-Jakob disease, which is so hard to pronounce that it is known as CJD or “mad cow disease.” Down’s syndrome is named after John Landon Down. About 25% or more of individuals with Down’s syndrome will develop Alzheimer’s after the age of thirty-five.

Most of us will never have anything named after us, other than maybe our descendents. You never hear of any babies named Linda anymore. In fact, if you wanted a girl born this year to have a name different from her classmates, you would be safe with Linda. I’m thinking that by the time we have great-grandchildren the name will make a comeback. It will be such an old name that it will come back in style.

My name was common, and I didn’t have to worry about people misspelling or mispronouncing it. When you see some of the unusual names, with unusual spellings, pronunciation can have your tongue turned upside down. What does that do to a person’s psyche to have their name pronounced wrong by every stranger they meet?

What about people who have names so silly that they are taunted by other children? Sometimes you wonder what people were thinking when they named a defenseless child something so ridiculous.

Names of places, people, and things can immediately create mental images in our minds. Whether a name is unusual or common, it identifies you to those who know you. When your family and friends hear your name, they immediately make a connection to the unique and special person you are.

Copyright April 2013 by L.S. Fisher

http://earlyonset.blogspot.com 

Dreams and Lewy Body Disease

I’ve always been a dreamer and often awaken in the night puzzling over what remote area of my brain produced those mini-motion pictures. My dreams are often a mystery, especially when I wake up with vivid images of my nighttime adventures.

We all dream, but some people cannot remember their dreams when they awaken. I tend to remember mine and find myself inspired, disturbed, or downright puzzled. I kept a dream journal for a long time as a means to jumpstart my writing. I am amazed at how many ideas I can glean from my dreams.

Just a few of the images I remember from last night: (1) I dreamed my house was connected to my work and a former employee had removed my cat’s litter box and let her outside. (2) I had gone to the dentist (whose office was at a mall) and forgot to remove the clothing protector when I left, but managed to accidentally put on two fancy scarves that didn’t belong to me. (3) My sister and I hopped on a trolley to return to the mall to get my coat and return the scarves.

Does any of that make sense? In a strange way, most of it does relate vaguely to something that happened the day before. Think about Dorothy and the Wizard of Oz. Her dream from the bump to her head was a fascinating distortion of the events leading up to the tornado.

Did you know that studies before 1950 showed that most people dreamed in black and white? That began to change during the sixties, and now about eighty-eight percent of us dream in color. Nearly ninety-six percent younger than twenty-five dream in color. This change is believed to be the result of the changeover from black and white film to color media. It really makes sense if you think about it.

One of the theories behind dreaming is that dreams are our way of consolidating our memories and attempting to make sense of them. We dream during the REM (rapid eye movement) stage. While our eyes move, normally, the rest of our body is paralyzed. In our family, several of us have, or have had, paralyzing nightmares. During this event, we are trying to wake from a bad dream and realize that although the mind is awake, the body cannot move. It is a disconcerting feeling, to say the least.

On CBS This Morning, Dr. James Galvin talked about a study from Mayo Clinic about dreams and the connection to dementia. This study showed that if you act out your dreams by kicking, shouting, punching, or thrashing about, you are at higher risk of developing dementia. In fact, the study shows this is the strongest predictor of developing Lewy Body disease.

Approximately 1.3 million people in the United States have Lewy Body disease. Both men and women develop the disease, but it is more common in men. Lewy Body disease is under diagnosed because of symptoms it shares with Alzheimer’s and Parkinson’s, but subtle differences help physicians make a diagnosis. Now, added to other differences, acting out dreams may be another indicator of the disease.

Lewy Body disease is best treated with a comprehensive approach by a team of specialists. Cholinesterase inhibitors, such as Aricept, work well on Lewy Body disease. In fact, it is believed the cholinesterase inhibitors are more effective on this disease than on Alzheimer’s. The movement disorders associated with Lewy Body is treated with Parkinson’s medication. Antipsychotic drugs should not be used for hallucinations because they react differently on persons with Lewy Body disease. These drugs worsen symptoms in fifty percent of those using them, and can cause a fatal reaction called neuroleptic malignant syndrome (NMS).

Of course, one of the problems with Lewy Body disease is REM Sleep Behavior Disorder. This is often treated with melatonin or clonazepam.

It is important to remember that if you move around and act out your dreams, it does not mean that you have Lewy Body disease or that you will develop it. If you develop signs of dementia, it is something to mention to your team of physicians during testing to determine the cause of your cognitive problems.

The connection between sleep and function the following day is strong. A lack of sleep or disturbed sleep affects our thinking process. Now, acting out during sleep means a person is five times more likely to develop Lewy Body dementia than those who sleep quietly during dreams.

Sleep is essential to our health and wellbeing. The REM stage of sleep is when our minds can take us places we will only reach through dreams.

Copyright © 2013 by L.S. Fisher

http://earlyonset.blogspot.com    

Spring Forward

Tonight, or should I say early tomorrow morning, is the time to set our clocks for daylight saving time. We know which direction to change the clock by reminding each other to “spring forward.”


So, I don’t have a problem with springing forward, but changing time, doesn’t work for me. But then, I don’t have any choice in the matter. I can’t continue using standard time when the rest of the country sets their clocks forward. Heck, it’s hard enough for me to be on time under the best of circumstances.

When the time changes, it takes weeks before my biological clock gets back in sinc with the clock on the wall. Anytime I travel to a different time zone, I go through this big mental adjustment. Whether I travel east or west doesn’t seem to make much difference. Either one will throw me for a loop, either while I’m there or when I get home.

One year, I carefully entered a schedule into my cell phone for the Alzheimer’s Advocacy Forum in Washington DC. I’m probably the only person who ever went to that much trouble, just to realize that I somehow managed to have the schedule set to Central time and every event I had painstakingly entered did not switch to the new time zone. Sure, the phone changed, but the entries did not change with it.

It seems that as I get older, I’ve reverted to questioning things—like daylight saving time. The first thing I found when I Googled the time change was that it is not “daylight savings time,” it is “daylight saving time.” In all honesty, we have the exact same number of daylight hours no matter what time the clock says. The whole idea is to rearrange time to suit our lifestyle, not to save any time whatsoever. Rearranging time is, of course, the biggest advantage.

The downside is that it messes up some of us for days, if not weeks. On the Monday following the time change, more auto accidents occur. Work productivity suffers.

I remember many years ago when I worked at a different job, we noticed one employee did not show up to work the day after the time change. One of my co-workers called him.

“What cha doin’?” he asked.

“Drinking coffee,” the missing employee replied, “like I always do this time of day.”

Boy, was he ever surprised to find out he was sitting there drinking coffee when he was expected to be at work.

Regardless of the extra daylight hours at the end of the workday, I always feel like an hour of my life has gone missing. It usually means an hour less of sleep for me since I can’t seem to go to bed early enough to get a full night’s sleep under the best circumstances.

It so happens that the older I get, the harder it is to make any fast moves and springing sounds like it could be beyond my speed. So, if springing is too hard, we could simply move forward. Each year we can move forward just a little slower.

Technically, it is not yet spring although the rain last night and the sound of dripping snow were hopeful signs of impending spring weather. All I know is that this is one year that proved that silly groundhog was wrong in his prediction—really, really wrong.

Before long, it will be officially springtime. Maybe by then, I’ll forgive Puxsutawney Phil for his faux pas. By summer, I’ll have adjusted to the time change and can enjoy the extra hour of evening daylight, which is after all the advantage of daylight saving time.

Copyright © March 2013 by L.S. Fisher
http://earlyonset.blogspot.com

Worrywartitis and a Storm Called Rocky

I tend to be a worrywart and when I heard the predictions last Monday, it was all I could do to keep from freaking out. We had just weathered a storm that dumped a foot of snow on us and then the models were calling for another six to twenty-two inches with thirty-mile-an-hour winds. I kept telling myself they could be wrong.

No amount of self-reassurance could keep me from worrying. I was awake more than asleep on Monday night as the storm raged. My cell phone said “light snow” but the wind-driven snow was anything but light.

By morning, I knew I’d be foolish to head out to work in the storm. Monday evening, we arranged to have some of the office staff picked up and taken to work. It was a good thing because we had major power outages at the electric cooperative where I work.

I was able to make some phone calls from home to help a little, but the brunt of the work fell on other staff, and, of course, the linemen who braved the blizzard to restore power to the people sitting in cold, dark homes.

As the storm named Rocky raged on, we became more aware of the damage. Nearly two-thirds of our system was in the dark.

I made it to work on Wednesday, and the rest of the week was a blur of calls and stories of how people coped without power—some of them for four days. The calls ranged from one extreme to the other—pleasant understanding to unbridled anger. The longer the outage lasted, the more exhausted our employees were and the more frustrated the members became.

Many conversations stuck with me, but I think the one that hit home the hardest was the lady talking about an elderly couple who were staying in town. They wanted to go home. She said, “He has serious health problems and didn’t bring enough medication. She gets so upset when things don’t go right. You know how people can get.”

“I certainly do,” I said. “I’m the same way. When something doesn’t go right, I get upset.”

The tension was broken as we had a laugh about human nature.

Throughout the week, I thought of the message Pastor Jim gave on Sunday. He said fear has many names and one of them is worry. I’m not sure where he got the statistics he quoted, but they made perfect sense to me.

Jim Downing said that forty percent of what we worry about never happens. I would say looking back at what I worry about, that’s probably a little low for me. But then, I’m a worrywart so it stands to reason that my personal fruitless worrying would be higher than average.

Thirty percent of worrying is about the past and can’t be changed. I saw an example of that when one of the employees asked me if she could take off next Monday. She needed to watch her grandchild, but she was afraid that she would be needed at work. I put it on the calendar and told her, “Sometimes family just has to come first. It took me a long time to realize that and I missed a lot of events because I put work first.” With tears in her eyes, she relayed a story of when she put work first and had never stopped regretting it.

Twelve percent is over criticism. I used to get my feelings hurt easily, but I outgrew that. I think to overcome worry about what others think of me, I’ve acknowledged that I’m not perfect and some people cannot be satisfied. I can’t do much about those who criticize me, but I can either use the criticism to improve myself, or if it’s unwarranted, let it die. I learned a lot about criticism this week.

Ten percent of worry is over health—yours or a loved one’s. I think we worry more about our loved ones that ourselves. One time I needed surgery and Jim kept insisting I tell my mother. I wanted to tell her when it was over. He couldn’t handle the stress on his own and he called her! I know that Jim’s dementia worried me more than it did him.

Eight percent of our worries are about real problems. Sometimes, worry can be a positive thing because we prepare ourselves. Some of those who worried about the storm used their concern as a springboard to prepare. They arranged a place to stay; they fired up generators or wood stoves. They became ingenious and went into survivor mode. Sure, they were as inconvenienced as anyone else, but they found a way to make the best of a bad situation. One woman fired up her grill to melt snow water to flush her toilet.

I wish I could say knowing the statistics means I’m now worry free, but it doesn’t. As long as snowstorms are wicked enough to have names, many of us will worry. Action does help alleviate some of the worry, along with faith and trust in a higher power.

Copyright © by L.S. Fisher, March 2013

www.earlyonset.blogspot.com

Thundersnow

We knew the storm was coming and needed to plan accordingly. Although the amount of snow on the ground was deceptively light at 6:40 a.m., the time I usually leave for work, the forecast warned that this was just the beginning of a long day. I stayed home deciding I’d rather be snowed in than out. Having been caught in both situations, on my last year in the working world, I have no desire to put my car in a ditch.

I do believe the nearly foot of snow was more than expected. The snow fell at about an inch an hour, and to make it more interesting thunder rumbled. The thundersnow fell, fell, and fell. I started measuring with a ruler and the last time I sank it into the ground, a mere inch showed. Then it started sleeting.

The intense snowfall brought the world to a screeching halt as banks, shopping centers, restaurants, and other businesses sent employees home. Interstates and airports closed. So many cars were stranded that in Kansas City, they towed them off by the hundreds in order to clear the highways.

Thundersnow is rare, and a little bit weird. In a normal thunderstorm with rain, thunder can be heard for many miles from where the lightning strikes. Snow acts as an acoustic suppresser and the sound of thunder can only be heard for two to three miles.

When we wake up each morning, we expect the usual, and we can be caught off guard when the unusual happens. The unexpected can strike at any point in time. It can come in the form of a phone call, a text message, a medical test, a bulletin on TV, or a knock on the door.

Hundreds of mundane days can be shattered with one nanosecond of the unusual. We can often chunk our lives into sections based on moments when our world tilted and never quite righted itself. One of those times in my life was when the doctor told us Jim had “dementia of the Alzheimer’s type.”

When you hear news like that, your ears start to buzz, as if they can’t bear to hear the unexpected information. Your heart quickens, and you stop breathing as your brain echoes with the words it refuses to process. Denial, hope, and despair wage a battle to see which one can get the upper hand.

Jim always said, “I don’t have that.” He preferred to think the psychiatrist was inept. It turned out that Jim had a rare type of dementia. It wasn’t Alzheimer’s, but it was just as bad, with the same inevitable outcome.

Not a day passes in this world without someone struggling to live through an impossible situation. Globally, 156,000 people die each day. That is a lot of grief to go around. In order to live a happy, normal life, we often harden ourselves to suffering if it does not affect us personally.

On the flip side of the death card, we celebrate the births of 350,000 babies each day. Of course, some people have more cause to celebrate births than others do. Babies born into poverty, although loved, may be a worry to his or her parents who struggle to provide basic food and shelter. Through the joy, every parent is afraid that something will go wrong. Our instinct is to protect our children from the cruelties of the world, but that is a goal set up to fail. Too little protection puts them in danger, too much can make them vulnerable. Births and deaths while unusual in our personal lives are daily occurrences when we look outside ourselves.

What does the future hold? No one knows. The future is both as unpredictable and predictable as the weather. Weather is never an exact science. Yes, sometimes we can be warned of the possibilities, or probabilities, but what will really happen can be a different story.

This morning I saw two opposing predictions for the storm expected on Sunday. We can have another ten inches of snow, or a thunderstorm with rain. In either case, it is expected to come in the night, so it’s anyone’s guess as to what Monday will bring. Will it be a normal workday, or another weird day with thundersnow?

Copyright February 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s Future: Research or Palliative Care

I’m a baby boomer and I know just how old we are getting. This year I plan to retire and hope to have time, finally, to enjoy all the activities I’ve had to put on the back burner or reserve for a few weeks of vacation. What I don’t want in my future is to be brought down by Alzheimer’s as we know it today.

Alzheimer’s disease would rob me of my memories, my skills, and effectively end life as I know it. I want to remain active throughout my old age and still have the ability to enjoy life thoroughly. I want to be like my mother!

We are nearing the crossroads with Alzheimer’s as we baby boomers age. Left unchecked, 13.8 million of us can look forward to developing Alzheimer’s disease. I don’t think there are thirteen of us who want this future, much less 13.8 million.

Why is this important to us? We all want to think that we will be one of the lucky ones without Alzheimer’s in our future. The biggest problem is we are not investing in preventing Alzheimer’s. We seem to be sitting on our butts instead of doing something about Alzheimer’s now.

Do you know how much this country invests in Alzheimer’s research? Last year the National Institutes of Health invested $606 million in Alzheimer’s research. That seems like a lot of money, doesn’t it? In fact, for Alzheimer’s it was the first time research funding from NIH exceeded $500 million. Should we be doing a happy dance? Not so fast. How much will it take to find a cure for Alzheimer’s? Just to give it some perspective—NIH spends $6 billion a year on cancer, and $3 billion for HIV/AIDS.

I know we have a budgetary crisis, and I really think we need to do something about it. In 2012, the cost of Alzheimer’s care totaled $200 billion, including Medicare and Medicaid payments of $140 billion. The cost of Alzheimer’s care is expected to increase 500% to $1.1 trillion by 2050 as we baby boomers age.

Think about these staggering numbers for just a moment. I’ll admit that I have trouble wrapping my head around numbers that start with a “b,” much less a “t”. If you look at Alzheimer’s from strictly a financial viewpoint, you have to admit that something has to be done. The only logical way to stop this impending financial disaster is to find a cure, or at least treatment that will halt the disease before it destroys independent living.

Are we ever going to accomplish this goal without investing in research? That is a question we need to ask our legislators, and it is one we do ask each year during our Capitol Hill visits following the Alzheimer’s Advocacy Forum.

For a moment, let’s put all talk of financial considerations aside. The bottom line in this entire argument is the emotional impact on those diagnosed with dementia and their families. Alzheimer’s is a life-changing event from which there is no turning back. It takes strength and determination to continue with quality life for persons with the disease, their family, and friends.

Though my volunteer work with the Alzheimer’s Association, I’ve met many people with Alzheimer’s and caregivers who manage this devastating diagnosis with dignity and courage. They have allowed news media into their homes to bring awareness. They don purple sashes, talk to their legislators about the disease, and leave a sense of urgency in their wake. Advocates with the disease give a face to the 5.4 million Americans who are living with Alzheimer’s right now, right here, in the United States.

So when we talk about the future of Alzheimer’s, we need to push, and push hard, for a cure, not palliative care for 5.4 million people today or 13.8 million in 2050.  Each life disrupted by Alzheimer’s is one too many. Our loved ones are not statistics—they are human beings with families that love them and memories far too precious to lose.

Copyright © February 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Fighting the Paper War

For the past two days, I’ve been fighting the paper war and though I’ve won a couple of minor skirmishes, I cannot say that I’m anywhere close to winning. It seems that I have bags, boxes, storage tubs, file cabinets and various temporary containers chocked full of paperwork.

I’ll be the first to admit that I get totally aggravated with myself when I can’t find an important piece of paper. When I’m being good, I file things away, or at least put common papers in their designated spot. On most days, I throw my mail on the end table and may or may not look at it, much less sort it.

Considering how hectic my life is, it makes perfect sense that I work in organized chaos most of the time. I put one project aside to work on another with a shorter deadline. I shuffle bags containing my writing group, Alzheimer’s council, Walk to End Alzheimer’s, Sedalia Business Women, Business Women of Missouri, and writing projects. Sometimes, I feel like throwing everything in the air and working on it randomly.

Yesterday, I tackled some of the various boxes marked “go through” which means I got tired of looking at the paper, didn’t have time to sort it, and just gave up and boxed it. So tackling one of those boxes has to be on a day when I don’t have anything else to do…or not. That day hasn’t happened yet, so I just decided to take a slice of time from pending deadlines to look at the waste products from past projects.

I sorted into two piles—keep and throw away. After a while, I became more hardened to what I felt like I could just toss. I threw away memories along with many of my creative efforts. When in doubt, I figured many of the papers were stored on a thumb drive somewhere.

Tossing, sorting, and examining documents was going quite well until I came across Jim’s Safe Return application. Then, the world seemed to stand still for just a moment as I recalled filling out the form. That piece of paper was a reality check. If Jim wandered off, he could become lost and need help to be reunited with us.

The part of the document that brought me to tears was the location of his tattoos. I knew one was on his left wrist because he covered it with his watch, one was on his thumb, and another on his shoulder. For some reason, I had trouble remembering just which shoulder was tattooed with his name. I could always picture the tattoo in my mind’s eye: “Jim” obviously a homemade tattoo. It looked like a prison tat, but in Jim’s case, his cousin Joe did the honors when they were young.

When I first met Jim, I didn’t believe he owned a shirt without the sleeves ripped off it. So I saw the tattoo the day I met him, and nearly every day of our marriage. So why did I have this mental glitch about which shoulder?

While fighting the paper war, I found a document that confirmed the tattoo was on his right shoulder. Of course, it was! I’m sure I knew that all along.

Some memories are painful, but I’m thankful that I have them. With all the millions of memories running through 100 billion connectors in my brain, it is no wonder that some of them are hard to find. It might take something to jog that memory and bring it to the forefront. At least that’s my story and I’m sticking to it.

With the discovery of the Safe Return application, I decided the paper war was best left on hold for me to return and fight another day. It only goes to show that among all the worthless pieces of paper we hang onto, sometimes a gem exists among them that freshens a memory from a different time and place.

Copyright © February 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Inquiring Minds Want to Know—Is It Really Alzheimer’s?

L.S. Fisher, Alzheimer's Advocate

There are two kinds of people when it comes to health issues—those who want to know everything and those who want to know nothing. One group falls into the category of die-hard realists and the other is filled with those in denial.

There aren’t any simple answers when it comes to health. A visit to a physician can make or break your day, and sometimes your spirit, depending on how he presents your health issues. But even more important is how you interpret the diagnosis you are given.

Getting an Alzheimer’s diagnosis is a long and arduous process. An entire battery of tests, scans, and evaluations are used to determine if you might have a treatable condition. Once other conditions—thyroid, drug interaction, vitamin deficiencies, too much calcium—are ruled out, your physician may give you a diagnosis of Alzheimer’s.

Hundreds of other related dementias exist besides Alzheimer’s. Since Alzheimer’s is the most common cause of dementia, it is the usual diagnosis. As the disease progresses, the type of dementia may become more evident as frontotemporal dementia, Lewy body disease, vascular or other common dementias. Some conditions can be determined by genetic testing—familial early onset Alzheimer’s or Huntington’s, for example.

For millions, the exact cause of dementia remains unknown or is determined by autopsy. We chose autopsy to get an exact cause of Jim’s dementia, which turned out to be corticobasal degeneration. Since Jim was diagnosed with Alzheimer’s, and not too many people know what corticobasal degeneration is, it is easier to say he had an Alzheimer’s type of dementia.

Currently, in the news is a discussion about a drug that allows a PET scan to detect Alzheimer’s plaques. The controversy is whether Medicare should pay for the $3,000 test. Opponents to the test say that it won’t help. I was floored to see the quote in the national article was from a physician in my hometown. The quote: “There’s never been a study that asked whether patients do better as a result of florbetapir testing,” said David Kuhlmann, a neurologist at Bothwell Regional Health Center in Sedalia, Missouri.

Okay, we all know there is no cure for Alzheimer’s and treatment is for symptoms only. Because of the bleak prognosis, no one seems to see a need for an accurate diagnosis. But early diagnosis is crucial in irreversible dementia for several reasons. First, it is important for a person with dementia to make important life decisions while they still can. Jim and I both signed advance directives, durable power of attorneys, and wills. Had we owned more, estate planning would have been even more important. Second, treatments are more effective in the early stages of the disease.

Putting aside all reasons for a diagnosis, and how it could actually help, there is the matter of cost, and Medicare needs to avoid unnecessary expense. So, this test costs $3,000. Expensive enough, I’d say. I’m going to throw out a ballpark figure of $20,000 to complete all the testing to attempt to rule out Alzheimer’s. In our case, most of that was paid through private insurance, and out of pocket, rather than Medicare.

Once we ruled out other conditions that could cause reversible dementia, we purchased expensive drugs that had no effect whatsoever on Jim, other than side-effects, because he didn’t have amyloid plaques. Of course, we didn’t know that until after he died. A $3,000 PET scan to find out his dementia was not Alzheimer’s, as diagnosed, could have saved many more thousands on drugs and costly emergency room visits.

I can think of a lot of scary diagnoses and can narrow down the ones that would make me take stock and reevaluate my entire life and lifestyle. Alzheimer’s type of dementia, cancer, and heart disease would be at the top of the list. I would only hope that if I were ever diagnosed with any of those three, I would be a realist and want to know every treatment available and evaluate my options to have the best life possible.

I’ll admit that Alzheimer’s, or any related dementia, scares me the most. I’ve seen it, felt it, and breathed it throughout Jim’s journey. Through my volunteer and advocacy work, I’ve met many people with Alzheimer’s and their caregivers who face the diagnosis with grace and unbelievable courage. An Alzheimer’s diagnosis affects not only your body, but your skills, communication, and a lifetime of memories that connect you to your loved ones. Have you ever thought about how empty you would feel without memories?

Isn’t it important to know what is wrong with our health, so we can either make it right, or at least do what we can? 

Copyright © L.S. Fisher, February 2013

www.earlyonset.blogspot.com