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