The Alzheimer's Box

Several years ago, I went through piles of papers from my various volunteer organizations and threw them into different totes. This was a haphazard way of sorting them and was much quicker than making file folders and filing them away. Besides, at the time, my file space was quite limited so that may not have been an option.

Today, I sorted through the Alzheimer’s tote. It was quite an interesting assortment of papers.  The first task at hand was to sort into three piles: recycle, burn, and file. I quickly pared down the amount of information to keep to a smaller stack.

In the Alzheimer’s box, I found articles that I thought were lost forever. I found the article about my friend, Karen Henley, published in Newsday Magazine. Karen was caring for her forty-two-year-old husband Mike, who had familial early-onset Alzheimer’s disease. Her story is one of courage, perseverance, and most of all, love.

I found an article that made me smile. My friend, David Oliver, was one of the researchers who biked in the Alzheimer’s Breakthrough Ride. I met him when we both served on the local Alzheimer’s chapter board of directors. He had joined the cross-country ride (San Francisco to D.C.) for the segment from Sedalia to Jefferson City. I drove into town early for the send off. David and four others took the scenic route to Jefferson City. David was dedicated to go above and beyond to further Alzheimer’s research funding. David passed away from cancer in March. It was especially touching to see this article and remember his wonderful sense of humor and optimistic outlook on life.

I found several years of Advocate’s Guides and Facts and Figures from some of the fifteen Advocacy Forums I’ve attended over the years. I go through these two books each year to see what we’ve accomplished and what we need to tackle. They serve as a valuable resource for me.

Of course, I had several folders of Alzheimer’s Walks, previously known as “Memory Walks.” I was able to pitch a lot of old forms. At one time, we had to make our own! I spent hours developing signup sheets for team captains and posters for events. It’s much easier now that the Alzheimer’s Association and the chapter have everything online and with a few clicks, we can download and print any report, form, or poster we need.

Then to top it off, there’s always the odd pieces of information. Prints of the airline tickets for one of the years my granddaughter went to D.C. with me. I found a stub from the Smithsonian and a map of the Old Town Trolley. I pitched an outdated congressional book.

Tucked in among the Alzheimer’s papers were a few from Sedalia Business Women. Oops, guess that was in the wrong box entirely. That one is still intact. Who knows, when I go through it I might find more Alzheimer’s memorabilia.

It’s kind of sad to look back at years and years of events that have come and gone. I’m happy to say my passion for Alzheimer’s advocacy is still alive. I’m just looking forward to the day when it is no longer necessary and Alzheimer’s is eradicated.      

Copyright © May 2015 by L.S. Fisher

http://earlyonset.blogspot

Pants on the Ground

I missed the original American Idol show where General Larry Platt performed his show-stopping “Pants on the Ground.” Our pastor played the video at the beginning of his message the following Sunday and ended with a stirring rendition of his version—“Made from the Ground.”

After a few Google searches, it became obvious to me that the General had become an overnight global sensation. What was Larry Platt doing the other 62 years of his life? He isn’t called General because he was in the military—he was a general in the war against injustice. He was a civil rights activist who was beaten on the Bloody Monday March. He was recognized September 4, 2001, for his heroic efforts during the civil rights movement. In other words, he was an unsung hero for the things he believed in his heart to be important.

We all know these unsung heroes. They are the people who not only support the cause they believe in, they throw heart and soul in the effort. They brush obstacles aside with super-human strength.

I have been fortunate to know many of the unsung heroes in the battle against Alzheimer’s. I’ve know people with the disease who looked beyond their own tragedy and found a mission. Tracy Mobley, diagnosed at 38, worked tirelessly on Camp Building Bridges for children whose parents have Alzheimer’s or a related dementia. Tracy pieced together a Memory Quilt in honor of people with the disease. She’s an advocate and volunteer for the Alzheimer’s Association.

Caregivers are heroes too. Karen Henley’s life is focused around caring for her husband, Mike. She doesn’t seek recognition for her labor of love. Caring for a loved one with Alzheimer’s is one of the most challenging jobs a person can undertake. Caregivers know the meaning of unconditional love.

Alzheimer’s staff and volunteers are the rank and file soldiers. Alzheimer’s staff shares their expertise with the volunteers to increase the size of the army.

Penny Braun began her work with the Alzheimer’s Association as a volunteer. She went on to become the first executive director of the Mid-Missouri Chapter. She turned a one-person office into a fully staffed dynamic entity serving 29 Missouri counties. Penny is a hero in the war against Alzheimer’s.

Volunteers make up the largest force in any organization. When it comes to Alzheimer’s volunteers, I think of Ted Distler’s smiling face. For many years, Ted has motivated, prodded, and led hundreds of people into being involved in Memory Walk. Ted works tirelessly to support other caregivers and to share his experiences and knowledge with his community.

If good works ever went viral like the catchy tune and words of “Pants on the Ground” these special people and millions of other motivated volunteers would become household names.

The General himself said that he hoped “Pants on the Ground” didn’t overshadow his civil rights work. That makes the General a pretty smart man as far as I’m concerned. Instant fame didn’t make him forget that life isn’t just one shining moment, it involves years of plugging away at the causes you believe in.

I hope General Larry Platt’s inspiration to the world isn’t just the tune, but the man singing it. Otherwise, the pants on the ground merely drag out our tracks and erase the footprints of our legacy.

Alzheimer’s Support Group: HBO Screening

We watched Momentum in Science Part II at our last support group meeting. When a new person entered the room and introduced herself, she said, “My dad is in the film.” She didn’t know if he was in the segment we were going to watch. I sat close to her and ask her to let us know if he was in this segment. Toward the end, she said, “That’s my dad.”

I had watched the entire HBO Project before, but picked up more information from the second viewing. An interesting chapter in this part was the DeMoe family story. Six siblings are being studied to try to learn more about familial early-onset Alzheimer’s. Out of the six, only Karla does not have the gene that will cause the type of Alzheimer’s that ended their father’s life at age 58. My heart ached for the five with the disease, but the saddest person was Karla. She has taken on responsibility for her brothers and sisters and already misses them as they spiral into the Alzheimer’s abyss.

Researchers believe they can find more effective treatments and possibly an immunization. The immunization trial was put on hold after some of those studied developed encephalitis. Immunization showed promise. It did a marvelous job of removing plaque, one of the hallmarks of Alzheimer’s.

When we think about diseases that have been eradicated by immunization, it would seem this would be the best case scenario for Alzheimer’s. It would certainly mean a life-changing difference for families like the DeMoe’s who have a new generation with a 50/50 chance of developing Alzheimer’s.

Dementia is devastating for the entire family. Karla is as much a victim of Alzheimer’s as her siblings. She is more aware of their personality erosion than they are. Her siblings will make peace with the disease, but Karla has already begun to grieve their losses.

Each person with dementia is an individual whose life has been decimated. The effects of Alzheimer’s types of dementia explodes outward with the power of a bomb blast and attempts to destroy the lives of those closest to ground zero.

My life was forever changed with Jim’s dementia. And as heart wrenching as Jim’s disease was for me, I think about the DeMoes and my friend Karen Henley whose husband Mike has familial Alzheimer’s. Karen’s life has been forever changed by her husband’s illness, and she must carry a burden in her heart for the possibility that her children may not be safe from the same disease. How much lighter would her burden be if an immunization could protect her children?

During discussion following the screening, we talked about some of the people who had taken part in experimental treatments. The immunization study consisted of giving several small doses of the drug. One woman whose husband received the injections said, “People kept asking how he was and we would say he is holding.” Holding is about as good as it gets with Alzheimer’s. The couple was disappointed and angry when the treatment ended.

Jim was on an experimental drug. I asked my sons for their opinion before enrolling Jim in the Phase III trial. My youngest son said, “Dad would be the first person to want to try it.” Jim was on the drug several months, but it had too many side effects and was never approved.

“My dad has changed so much since the film was made,” our guest at support group said. “He is frailer now.” I knew what she meant. Over the ten years Jim had the disease, his physical appearance changed dramatically.

Families like the DeMoes and Henleys are in the minority. Most people do not know the reality of living with dementia until it strikes their family. Jim was the first and, thankfully so far, the only person in his family to develop the rare form of dementia he had.

According to the film, Alzheimer’s is the second most dreaded disease after cancer. More than five million Americans have Alzheimer’s and the number of cases is expected to double every twenty years. Researchers are exploring many promising avenues, and work diligently toward changing Alzheimer’s from a hopeless disease to a manageable one.

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For information about drug trials or to become Alzheimer’s advocate visit www.alz.org.

Alzheimer's: The Love and the Heartbreak

My friend, Karen Henley, sent me a link to an in-depth interview with her family and others. Karen's huband, Mike, has early onset Alzheimer's. His family cares for him at home. To read the articles and watch the awesome videos go to http://longisland.newsday.com/projects/alzheimers/