Alzheimer’s Breakthrough Ride - Sedalia MO

I began this day of vacation at 4:30 a.m. to meet and greet the four Missouri researchers who will cycle 71 miles from Sedalia to Jefferson City. Jon Cirrito, PhD, and Jessica Restivo, are researchers from Washington University School of Medicine in St. Louis. Joining them were Ben Timson, PhD, Professor of Biomedical Sciences at MU and David Oliver, PhD, Assistant Director of MU Interdisciplinary Center on Aging and Board President of the Alzheimer’s Association Mid-Missouri Chapter.

The four researchers and the support team stayed the night at Comfort Inn in Sedalia, and I wanted to catch up with them before they left town. I had a cup of coffee while they ate fruit, drank juice, and prepared for the ride.

I know David Oliver and he introduced me to the other members of the team. Dr. Jon Cirrito showed me a Google map of the route. They would be passing through some small towns that not many other than locals have visited. The bicyclists will go through Clifton City (“not a city,” I informed them), Prairie Home, and Jamestown before arriving in Jefferson City. They have three scheduled rest stops along the way and have no time limit other than to reach their final destination before dark.

“Some of the other groups have hit really bad weather in other states,” Dr. Oliver said as he applied generous amounts of sunscreen to his face and arms. “We credit this beautiful 60 degree weather to collective prayer.”

Dr. Oliver, 68, was the oldest in this group of cyclists. He said cyclists had to sign a release and list the medicines they took. “My list was long,” he said. “I have a stent, poor knees, and lousy hearing, but I am functional and know I can ride this bike 71 miles for this worthwhile cause. I’m looking forward to it.”

We walked outside where the four cyclists each filled two bottles—one with water and the other with Gatorade. Finally, the bicycles were loaded onto the two support vehicles, and we headed across town to Hubbard Park.

The bicycles were unloaded, and Jessica decided she needed long sleeves and pulled a long-sleeved T-shirt over her official Alzheimer’s Breakthrough Ride shirt. They climbed on their bikes and fastened their helmets. Dr. Cirrito took the lead on his bicycle equipped with a GPS.

It was exciting to see this group of researchers be part of a nationwide effort to make Alzheimer’s disease a national priority. The Ride began in San Francisco on July 17 and will end in Washington DC on World Alzheimer’s Day, September 21. More than 55 researchers have been collecting signatures to present to Congress urging them to make Alzheimer’s disease a national priority. The original goal to obtain 50,000 signatures has been doubled to 100,000.

Approximately 110,000 Missourians have Alzheimer’s disease. An estimated 5.3 million Americans have Alzheimer’s and as the baby boomers age, the number is expected to swell to as many as 16 million by 2050.

Dr. Oliver explains that research funding is dismal especially considering the toll on individuals, families, and others. “I believe current research spending is around $375 million. We are riding to encourage Congress to push this to $2 Billion and make AD a major priority like other killer and devastating diseases.”

The side of the “pony” (as the truck is called) says, “The toughest hill to climb is Capitol Hill.” Even with the winding, hilly blacktop ahead of them, I’m sure Jessica, Jon, Ben, and David wholeheartedly agree.

Follow the progress of Alzheimer’s Breakthrough Ride at http://www.alz.org/. While you’re there, sign the petition.

Copyright © L. S. Fisher August 2010
http://earlyonset.blogspot.com

Some Will Walk and Others Will March

Thursday night we began to finalize plans for our September Memory Walk. Months of leg work, calls, and personal contact have led up to the big date less than a month away. Our catch phrase this year is “It all just falls into place.” At least that’s the way it seems to people who show up on walk day to find that helping hands have joined together to make sure the event runs smoothly.

A Memory Walk is a big undertaking and without community Champions, it would never happen. Champions are the teams like Fair View that have participated since the first walk I organized in 1999. They have been part of every walk, every event that the Memory Walk committee has hosted. Not satisfied with doing a little, they do a lot. They fundraise all year, and consistently support us with thousands of dollars. This year, they took another step and became a corporate sponsor.

It warms your heart to know that even in these tough economic times, people continue to support our local chapter. One of our longtime sponsors is Ken Weymuth at W-K. I was having an oopsie fixed on my new car when I asked if Ken was in the office. I had dropped off a corporate sponsor packet a few months back and had never had a chance to follow up on it. I walked into his office and asked him if he would be a sponsor and he asked, “What will it cost me?” A few minutes later I walked out check in hand.

The Sedalia Democrat has been our advertising sponsor for more than ten years. I have worked with three different publishers. The current publisher, Dave Phillips paired us up with Erin Livengood who takes the time to produce professional ads.

Third National Bank and Central Missouri Electric hold perfect corporate sponsor records. Septagon came onboard during the years Shelley Spinner coordinated the walk. That was also the time we started printing the shirts locally and Main Street Logo pitched in to do that for us.

The list goes on and on—the sweet ladies who give $5 to sponsor a walker, companies that donate food, drink, and door prizes, the host of volunteers that turn up to set up tables or dole out T-shirts, and let us not forget Don the Balloon Man who twists balloons into colorful hats.

We have a walk with ordinary people—sorry, none of us are celebrities. But more celebrities are supporting the Alzheimer’s Association and one of them decided to hold a “March” rather than a walk. Maria Shriver, California’s First Lady has organized a 5K March and candlelight vigil. Several celebrities have already committed to joining in the March—Rob Lowe, Leeza Gibbons, and Jane Fonda—to mention a few. Celebrities can make a powerful impact, but that doesn’t replace the efforts needed by everyday people who have spent time in the trenches caring for a loved one with Alzheimer’s. It doesn’t replace the hugs of support and encouragement for caregivers to help them make it through difficult days, or smiles to lift their spirits when they are overwhelmed with responsibility.

Think about what you can do to make it “fall into place.” It takes all of us who know what it’s like to make the effort to bring Alzheimer’s awareness to our local area so that it might expand to the national arena and onward to a global movement. So whether we march or walk, it is important that we do everything we can to call attention to the alarming escalation of dementia as the baby boomers age. The only way to move forward is one step at a time.

Copyright © August 2010 L.S. Fisher
http://earlyonset.blogspot.com

A Leaf on the Family Tree

My mom stayed all night with me Saturday night. I was trying to remember the last time she spent the night at my house and finally decided it was when Jim was still at home but needed supervision at all times. I could not get professional help for more than about six hours a day, three days a week. That left a lot of gaps during my forty-hour workweek. My mom would pack a bag and drive for an hour to fill out the weekly schedule. She would arrive before the day help had left and stayed with us a couple nights each week.

I know my brothers and sisters agree with me that we are fortunate to have a mother who is in such good health although she is in her eighties. Mom is fun-loving and still likes to play her guitar and pal around with her sister-in-law, Lebetta.

When my mom came up Saturday to spend the night, we didn’t have anything we had to do, so we visited and spent some quality time together. It wasn’t until after we spent the afternoon and evening together that I realized how much I missed having that much time with her. It’s a sad commentary on how hectic I’ve let life become that I have so little time to visit with my own mother.

My mom and I have a lot to talk and laugh about. Sometimes the conversation turned serious as we talked about dreams we have about loved ones who were once a major part of our lives. Mom talked about her dreams of dad. “He is usually about thirty-five in my dreams,” she said. “He’s always young and healthy.”

“Jim never has dementia in my dreams,” I said.

“I dream about Mommy and Poppy,” she said, meaning her parents. “You know, Lebetta and I were talking the other night about how we know more people that have died than are alive.”

I can’t imagine the hole left in a person’s life when they have outlived all their siblings. My mom came from a big family and she is the only one living. Her parents, sister, and brothers are all gone.

I think about my cousins on Mom’s side of the family. How they’ve each lost at least one parent, and many of them have lost both. My dad died in 1990 at 67 years old. That is not much older than I am now. My mom has soldiered on through two serious relationships that have both ended. It is a good thing that she is a strong woman. She checks on my brother Donnie almost every day. She’s moved to town to be near the long-term care facility where he lives. My brothers and sisters who live nearby, provide the kind of relief for Mom that she did for me when Jim was the one that needed looking after.

In many families, relatives feud with each other and every family gathering is tension filled, because no one can keep track of which family members are not speaking to each other or whose feelings are hurt. Our family has always been blessed with a healthy dose of minding your own business. We are supportive of each other, but none of us try to tell a brother or sister how to live his or her life. Nope, we just live and let live. It may not work for every family, but it certainly works for ours.

Each of us is a leaf on our family tree and, like a leaf, we can’t just hop from our tree to another because we don’t like the limb God attached us to. It is always much better to get along with the other leaves on the same branch.

While I was gone this evening, Mom called and left a message on my answering machine. She just wanted me to know that she really enjoyed our visit. It was too late by the time I got home to call her back, but I have to say a resounding, “Me too!”

I’m thinking that having my mom stay the night is something I need to do more often. Maybe next time she can bring her guitar. Jim would be pleased if guitar music once again drifted through the rooms of the house he built.

Copyright © August 2010, L.S. Fisher
http://earlyonset.blogspot.com

When Puzzle Pieces Don’t Fit

When Jim developed dementia, I thought it would be a good activity for us to put jigsaw puzzles together. I set up a table and we worked on a 750 piece puzzle. Jim always felt good when he could fit a piece into the puzzle. Sometimes, he bent pieces trying to force them into places where they “almost” fit.

I went to a Business Women of Missouri conference this weekend and was particularly impressed with speaker Mary Gage’s comparison of life to a jigsaw puzzle. She gave some blog-worthy information in her motivating session. One of the things she talked about that I thought was relevant to my life was how sometimes a piece don’t seem to fit, and we just have to lay it aside and put it in later when we find where it belongs.

She asked if anyone ever tried to put a puzzle together without looking at the picture. Not a single hand was raised. No, we all want to know what the picture looks like before we start putting the pieces together. Besides, if we are honest, it makes it a whole lot easier. We don’t waste time trying to place a piece of grass at the top of the puzzle when we know from the picture that it goes at the bottom.

As with many conferences, my “ah-ha” moment didn’t come from the speaker, but rather from a stranger sitting across the table from me. We had a puzzle on our table, and as a group, we were asked to put the puzzle together. Well, it wasn’t a jigsaw puzzle, or I’d still be sitting at that table trying to do my part. It was one of those children’s puzzles with probably less than 30 pieces in it.

We chatted while we put the puzzle together, and the woman said she was a “puzzle person” and that one time she had planned an exercise with puzzles. She had taken two puzzles with the same picture and mixed them together. The idea was that the pieces would be interchangeable and make two puzzles when they were done.

I’m not sure what the point of the exercise was, but she learned that just because two puzzles have the same picture, doesn’t mean the pieces are interchangeable. What she discovered was that the pictures were identical on the boxes, but pieces were shaped differently.

So where is my “ah-ha” moment in this story? People with Alzheimer’s have the same picture on the outside that they had before they developed the disease, but they are trying to fit pieces from a different puzzle into their life’s picture. It’s like they’ve been handed a different box of puzzle pieces to fit into the puzzle they already have. The pieces no longer fall into place, and even if you put one aside, you won’t find a place for it later.

We all know from past experience, that unless the pieces are a perfect fit, you can’t force them into place. A misfit piece leaves a gap, and you know immediately it won’t work. Occasionally, you will find a piece of a puzzle that seems to fit, but it may stand out from the surrounding pieces because it is the wrong color and doesn’t complete the picture.

While Jim and I worked on our puzzles, he would sometimes pick up a piece and walk away with it in his hand. He would lay the pieces down in out of the way spots and sometimes I couldn’t find them. In the completed puzzle all the pieces we had fit neatly together, but sometimes as many as five pieces were missing.

We know where we want our lives to go, and we plug away at the pieces until we find where they belong. But isn’t our personal life’s big picture fuzzy and not a finished image? I believe that our pictures change and our puzzle pieces are constantly adapting to the uncertainty.

When a person has Alzheimer’s, he struggles every day to fill in missing pieces of this puzzle called life. By being supportive, you might help your loved one find some of the misplaced pieces and fit them where they belong.

Copyright © August 2010 L. S. Fisher
http://earlyonset.blogspot.com

Already August

I turned the calendar this morning and found it hard to believe it is already August. Before this month is over, kids will be back in school, and we’ll all be wondering what happened to the summer and all the plans we made in the springtime.

When I was in elementary school, it seemed to me that summer lasted for a long time. The first day of school some kids had changed so much over the vacation we might not recognize them at first glance.

Now that we are adults, we don’t usually see drastic changes over three months’ time. It’s hard to notice a few more “laugh lines” or that the sun is glinting off more gray hair than the last time we saw someone. And unless you are in the educational field, you most likely see your co-workers nearly every day and don’t have much occasion to be shocked by a change that happened while you weren’t looking.

August is State Fair month. It is usually extremely hot or stormy. What is it about the State Fair that brings out the worst in the weather? Is it because all us wimps are used to air conditioning and suddenly find ourselves in the great outdoors—walking around on hot pavement—without any shade. What’s not to love about that?

It seems like time goes by faster than it ever did. Not only is summer almost gone, but with surprising speed we’ll be into 2011. Here we are ten years into the twenty-first century and I still sometimes want to put “19” in front of the year.

August was once a time of birthday celebrations. Jim would have been 65 years old later this month. He lost the battle with dementia more than five years ago—and never made it to his 60th birthday.

At one time, in my youth, I’m sure I thought anyone in his or her 60s was ancient. Now, it doesn’t seem old at all. I have three older siblings who are in their 60s, and I’m getting pretty darn close to it myself. I have a little time left, but as fast as time goes by, we’re going to have to call the fire department before anyone lights the candles.

Growing older is like anything else—there is good and bad. On the plus side, I think we older people don’t worry so much about what others think of us. We still like to look good, but we would rather have a few wrinkles than have a surgeon pull our faces into a plastic mask. Some of us wear our gray hairdos proudly, or else we just cover the gray with whatever dye suits our fancy. See a man with a bald spot and you’ll often see one that shaves it all off as if he had it planned all along. Another plus side to getting older—our eyesight begins to fail us and (guess what!) that makes everyone look better. We can’t see the flaws like we once could.

On the downside, we find we can’t always ignore some of the things we used to. Last night when I woke up with a heavy feeling in my chest, I debated whether it was from all the acidy tomatoes I had eaten, or whether I needed to call 911 to get emergency medical help. I look at myself in the mirror and think, I may not feel too old, but I am for sure old enough to have to consider a heart attack as something not too far out of the realm of possibilities.

Another down side—you may only pack on a pound or two a year, but we know what that means. The more candles on the cake, the more likely we are to be packing extra pounds around the old midsection. That in turn causes health problems—diabetes, high cholesterol and triglycerides, high blood pressure, and on and on and on. We wind up with problems in body parts that we didn’t even know we had. Thank goodness for Google and all the health networks available with all the symptoms, side effects, and health alerts that any aging computer savvy middle-age-going-on-senior might have.

Here it is already August—and the next thing you know it will be autumn. Probably in the next week or so Halloween decorations will be in the stores. Time passes by, we flip the calendars and wonder what happened to summer. It used to seem like it lasted so long and now it just flashes by with the speed of life.

Copyright © August 2010 L.S. Fisher
http://earlyonset@hotmail.com