My granddaughter’s last home volleyball game was Thursday night. Somehow I had never seen the volleyball schedule and had missed every game so far. I looked at my calendar and sighed.
“I have an SBW meeting Thursday,” I told my son, Eric, when he called to tell me about the game. The games started at 5:30 in a nearby town, but I don’t get off work until 6:00. Still, I had intended to take some vacation to go to some of the home games.
“Well, maybe you can go to her tournament. That will be either next Saturday or the next one, I’m not sure which,” Eric said.
I didn’t have to look at my calendar to know that it didn’t matter which Saturday—both were booked solid. “I’ll just take off work early and be a little late to my meeting,” I said.
Before I left work, I gave Brenda (co-worker and SBW member) the money to pay for my dinner. She said she would save me a place. “Ask them to serve my meal and if I’m late, I’ll just eat it cold.” I figured that if necessary I could leave before the game ended and be only fifteen minutes late.
I arrived at the gymnasium just as the “B” Team was finishing up their game. I found Eric, Shawna, and Shawna’s mom and dad sitting on the bleachers. Soon the “A” Team finished their warm up and the game was on.
I played on the volleyball team when I was in school and on both a women’s recreational team and a co-ed team with Jim when I was younger. I settled in to watch the game confident that at least this was a game I understood.
A girl served the ball and it went out of bounds. The scoreboard chalked up a point for the other team. I thought my eyes were playing tricks on me. Then, a girl on our team served the ball and the other team returned it, our girls dropped it, so score another point for the visiting team.
“I don’t understand why they are getting points,” I said to Shawna. “Only the team serving can make points.”
“Either team can score regardless of who serves,” she said.
“Yeah, they’ve changed the rules since we were in school,” said Shawna’s mom, Wanda. “At first I was really confused.”
My granddaughter was her team’s best server. She scored five quick points just by tossing the ball in the air and slamming it over. “We couldn’t serve overhand in school,” I said.
As I watched the game, I realized the changes made it a much faster paced game. I suppose that’s much more suited to today’s faster paced world.
On my way to my meeting, I pondered on how many rules have changed over the years. When I was young and dressed up, the only question was whether to wear short or long white gloves. Shoes were generally black or white and you didn’t wear the white ones after Labor Day or before Easter. Everyone dressed up for church, and you wouldn’t have dreamed of wearing your blue jeans or shorts and sneakers. Girls wore dresses to school—it was in the rules.
Some of the rules of life have changed. I heard on the news that for the first time in America, more couples live together without tying the knot than couples who are married. How could such a thing happen? Just to mention a few reasons: people marry later in life, divorce can be financially devastating, there is little to no stigma attached to having children when the parents aren’t married. Sometimes when a loved one has a serious illness, like Alzheimer’s, couples divorce to be able to afford nursing home care.
Rule changes affect everything and everyone around us and can be either good or bad. Changes are bad when it makes things easier, but not better. Rule changes are good if they make the mundane or outdated fresh and new. They may be good if the only good reason for keeping a rule is “that’s the way it’s always been done.”
When I walked into my meeting every woman in the room faced the flag with her hand over her heart. I stopped inside the doorway and joined them to recite the same Pledge of Allegiance I had learned in elementary school. There is no doubt that some rules are better left alone.
Copyright © 2010 L. S. Fisher
http://earlyonset@hotmail.com
Saturday, October 9, 2010
Tuesday, October 5, 2010
When Counting Blessings—Count Your Friends
I walked into church Sunday and heard someone call out “Hey, girlfriend!” Looking around, I spotted a woman from last Wednesday’s “Girlfriends Guide to Christian Living” class.
Her greeting made me smile with the memory of the evening spent with a new group of girlfriends of all ages. Last Wednesday, we listed the qualities of a girlfriend. The leader, Jo Perusich, wrote them on a whiteboard. The women called out: Honesty, Loyalty, Steadfastness, Can keep a secret, and Bathroom Buddy.
“Bathroom Buddy. I love it!” Jo said.
“Yes,” said the youngest member of the group, Bethany. “When you go to the bathroom, she gets up without you asking so you don’t have to walk across the room by yourself.”
Jo asked us several thought-provoking questions and we were to write the name of a friend and the incident. When we finished, she asked what we had discovered.
“I was surprised that I thought of certain people as friends,” said one woman.
“I noticed the same name came up several time in different roles,” said another.
The homework assignment was to connect with a girlfriend and tell her that you considered her a blessing, a gift of God, and how much you value the friendship. I thought about this and had an old friend in mind.
Sunday morning, I sat beside Sheila, the Memory Walk Coordinator, and shared the news that our walk total was now more than $18,000. After the services, she and I talked all the way to the lobby where we parted. We hugged each other, and suddenly I knew who I needed to share the message with. I took her hands, looked her in the eye, and told her that she was a real blessing in my life.
She got tears in her eyes and said, “You don’t know how much that means to me.”
I am so thankful that Jo challenged us to put into words how precious friends are to us and how much our lives are enriched through giving and receiving the love of friends.
When Jim developed dementia, I lost my best friend in the world. He was the person who always had my back, was always on my side, no matter how misguided I might be. Strangely enough, it was because of Jim’s dementia that my circle of friendship grew.
First, I became closer to my other female family members as they pitched in to help me. I became close friends with women I met through my Alzheimer’s volunteer work including three women I met in Washington DC. We called ourselves the four musketeers. My connection with these women—Jane from New York, Sarah from Virginia, and Kathy from Maryland—would never have happened if I hadn’t gone to the Alzheimer’s Advocacy Forum.
The friendship circle grows through my involvement in writers groups, in my business women’s group, and through work and work-related conferences. We have limitless opportunities to grow our relationships with friends. With each new friendship we open up our hearts to the blessing of giving and receiving.
In this busy, busy world we may not have as much time for friends as we would like. It is amazing how much a lagging spirit can be rejuvenated by squeezing an hour from our schedules to spend quality time with close friends.
copyright (c) October 2010 L.S. Fisher
http://earlyonset.blogspot.com
Her greeting made me smile with the memory of the evening spent with a new group of girlfriends of all ages. Last Wednesday, we listed the qualities of a girlfriend. The leader, Jo Perusich, wrote them on a whiteboard. The women called out: Honesty, Loyalty, Steadfastness, Can keep a secret, and Bathroom Buddy.
“Bathroom Buddy. I love it!” Jo said.
“Yes,” said the youngest member of the group, Bethany. “When you go to the bathroom, she gets up without you asking so you don’t have to walk across the room by yourself.”
Jo asked us several thought-provoking questions and we were to write the name of a friend and the incident. When we finished, she asked what we had discovered.
“I was surprised that I thought of certain people as friends,” said one woman.
“I noticed the same name came up several time in different roles,” said another.
The homework assignment was to connect with a girlfriend and tell her that you considered her a blessing, a gift of God, and how much you value the friendship. I thought about this and had an old friend in mind.
Sunday morning, I sat beside Sheila, the Memory Walk Coordinator, and shared the news that our walk total was now more than $18,000. After the services, she and I talked all the way to the lobby where we parted. We hugged each other, and suddenly I knew who I needed to share the message with. I took her hands, looked her in the eye, and told her that she was a real blessing in my life.
She got tears in her eyes and said, “You don’t know how much that means to me.”
I am so thankful that Jo challenged us to put into words how precious friends are to us and how much our lives are enriched through giving and receiving the love of friends.
When Jim developed dementia, I lost my best friend in the world. He was the person who always had my back, was always on my side, no matter how misguided I might be. Strangely enough, it was because of Jim’s dementia that my circle of friendship grew.
First, I became closer to my other female family members as they pitched in to help me. I became close friends with women I met through my Alzheimer’s volunteer work including three women I met in Washington DC. We called ourselves the four musketeers. My connection with these women—Jane from New York, Sarah from Virginia, and Kathy from Maryland—would never have happened if I hadn’t gone to the Alzheimer’s Advocacy Forum.
The friendship circle grows through my involvement in writers groups, in my business women’s group, and through work and work-related conferences. We have limitless opportunities to grow our relationships with friends. With each new friendship we open up our hearts to the blessing of giving and receiving.
In this busy, busy world we may not have as much time for friends as we would like. It is amazing how much a lagging spirit can be rejuvenated by squeezing an hour from our schedules to spend quality time with close friends.
copyright (c) October 2010 L.S. Fisher
http://earlyonset.blogspot.com
Tuesday, September 28, 2010
Doctors Age Just Like Everyone Else
Recently, my three-year-old grandson crammed a crayon up his nose and a specialist had to extract it. When my son told me about the incident, I said, “Kind of reminds me of the time I lost the pencil eraser in my ear.”
“Was that you? I thought it was one of your brothers,” he said.
I recall that experience vividly, considering I was only a second grader. My ear itched, and I used the eraser end of my pencil to scratch it. I noticed the eraser had fallen out of the pencil and looked all around my desk for it. When I couldn’t find it, I just assumed it had rolled out of sight.
A week or so later, I developed a terrible earache. Mom took me to our family doctor in Stover. Dr. Hoffa sat me on a table and pointed a bright light at my ear.
“Wow, that light is shining right through your ears and onto the wall,” he said.
I might have been only seven, but that didn’t seem right to me. “No it isn’t,” I said. I did roll my eyes around trying to see if the light really was shining through.
The doctor stuck some high-tech instrument into my ear, tweezers, I’m pretty sure. Then, he showed me the little pink eraser off my yellow No. 2 pencil. “You knew that light wouldn’t shine through because the hole was plugged up with this.” he said.
“I wondered what happened to my eraser,” I said.
“Why didn’t you tell me you had an eraser in your ear?” my mom asked.
“I didn’t know it was there!” I said.
The doctor gave me a sucker and sent me on my way. Dr. Hoffa was the only doctor I saw until I married and moved away. He eventually retired and developed Alzheimer’s before his death.
When Jim and I were newlyweds, our family doctor was Dr. Kirby who retired many years ago.
When a family doctor retires, patients scramble to find another doctor. It’s discouraging when you make call after call to hear, “We aren’t taking new patients.” You keep asking yourself questions: Will I have to resort to finding a specialist for each medical problem I have? How will I find a good cold and flu specialist? Is the emergency room going to be my primary physician?
A 2008 University of Missouri (MU) study predicts a 44,000 shortfall of family doctors by 2025. Jack Colwill, professor emeritus of family and community medicine at MU School of Medicine, attributes the shortage to retiring baby boomer doctors being replaced by younger doctors who specialize rather than go into general practice.
Given how difficult it has always been to find a family doctor, this is not a huge surprise to many of us. We have become a more mobile society and if we aren’t moving from place to place, our doctors are. Either way, it’s up to us to find a doctor that fits our needs.
Rural areas will be particularly hard hit. Programs are in place to encourage medical students to become general practitioners in rural areas. MU has programs to place students in rural hospitals for their residencies and pre-admits students each year from rural areas. The students admitted under these programs are more likely to practice family medicine in a rural setting.
Family doctors know who you are when they see you. Your family doctor knows your family history, as well as your medical history. When Jim began to develop dementia, our family doctor knew Jim’s forgetfulness was not normal for him.
There may not be too many old-fashioned general practitioners like Dr. Hoffa, but as long as kids have No. 2 pencils, we need family doctors.
Copyright © September 2010, L. S. Fisher
http://earlyonset.blogspot.com
“Was that you? I thought it was one of your brothers,” he said.
I recall that experience vividly, considering I was only a second grader. My ear itched, and I used the eraser end of my pencil to scratch it. I noticed the eraser had fallen out of the pencil and looked all around my desk for it. When I couldn’t find it, I just assumed it had rolled out of sight.
A week or so later, I developed a terrible earache. Mom took me to our family doctor in Stover. Dr. Hoffa sat me on a table and pointed a bright light at my ear.
“Wow, that light is shining right through your ears and onto the wall,” he said.
I might have been only seven, but that didn’t seem right to me. “No it isn’t,” I said. I did roll my eyes around trying to see if the light really was shining through.
The doctor stuck some high-tech instrument into my ear, tweezers, I’m pretty sure. Then, he showed me the little pink eraser off my yellow No. 2 pencil. “You knew that light wouldn’t shine through because the hole was plugged up with this.” he said.
“I wondered what happened to my eraser,” I said.
“Why didn’t you tell me you had an eraser in your ear?” my mom asked.
“I didn’t know it was there!” I said.
The doctor gave me a sucker and sent me on my way. Dr. Hoffa was the only doctor I saw until I married and moved away. He eventually retired and developed Alzheimer’s before his death.
When Jim and I were newlyweds, our family doctor was Dr. Kirby who retired many years ago.
When a family doctor retires, patients scramble to find another doctor. It’s discouraging when you make call after call to hear, “We aren’t taking new patients.” You keep asking yourself questions: Will I have to resort to finding a specialist for each medical problem I have? How will I find a good cold and flu specialist? Is the emergency room going to be my primary physician?
A 2008 University of Missouri (MU) study predicts a 44,000 shortfall of family doctors by 2025. Jack Colwill, professor emeritus of family and community medicine at MU School of Medicine, attributes the shortage to retiring baby boomer doctors being replaced by younger doctors who specialize rather than go into general practice.
Given how difficult it has always been to find a family doctor, this is not a huge surprise to many of us. We have become a more mobile society and if we aren’t moving from place to place, our doctors are. Either way, it’s up to us to find a doctor that fits our needs.
Rural areas will be particularly hard hit. Programs are in place to encourage medical students to become general practitioners in rural areas. MU has programs to place students in rural hospitals for their residencies and pre-admits students each year from rural areas. The students admitted under these programs are more likely to practice family medicine in a rural setting.
Family doctors know who you are when they see you. Your family doctor knows your family history, as well as your medical history. When Jim began to develop dementia, our family doctor knew Jim’s forgetfulness was not normal for him.
There may not be too many old-fashioned general practitioners like Dr. Hoffa, but as long as kids have No. 2 pencils, we need family doctors.
Copyright © September 2010, L. S. Fisher
http://earlyonset.blogspot.com
Monday, September 20, 2010
The Dance and Memory Walk
“Do you remember me?” a lady asked. “I worked at Four Seasons Living Center when Jim was there.” Jim was at Four Seasons four years and although her face looked familiar, I couldn’t come up with her name. “I’m Pat,” she said. “My husband wound up in the same room Jim had in the Alzheimer’s unit.”
“I remember you were having problems with your husband. I’m sorry to hear he had Alzheimer’s.”
“Yeah,” Pat said, “one day the staff found him standing on top of the sink.”
I had to laugh about that one. “Well, Jim did a lot of things, but he never did that!”
“You know, you just have to remember the funny things that happened,” she said. I agreed. It is much better to remember the times we smiled than to think about the distressing times.
Just before we began the walk, our master of ceremonies, Terry Kelley, sang “The Dance,” and I walked up to take a picture of him. The song was so touching, I gave Terry a hug. The tears started flowing because the words of that song are so true for me and for millions of caregivers.
My cousin Reta had taken a picture too, and she pulled me into a big bear hug. Connie Pope from Fair View hugged me too and said, “Are you all right.”
I think through the boo-hooing I let her know I was. “It’s that song,” I said.
Connie said, “Look around, Linda. See all these people here today? They wouldn’t be here if it hadn’t been for you and Jim. You are the one that started this whole thing.” I may have started it, but Fair View has been at every Memory Walk since the first one I coordinated in 1999.
The teams were introduced, then Memory Walk Coordinator Sheila Ream and I carried the Memory Walk banner and led our walkers down Memory Lane toward the fairgrounds. Sheila handed off the banner to her son Phillip who has helped us throughout the year. As we rounded the corner and saw the long line of walkers behind us, Phillip said, “I’ve looked forward to this all year.”
While the prizes were being announced, we handed out purple and white balloons for the balloon release. We used a marker to write our loved one’s names on the balloons. I put Jim’s name in a heart and wrote “To heaven with love.” I tied the balloon onto a basket handle, and while I signed a book, Jim’s balloon broke away and raced toward the sky.
That afternoon, after a leisurely soak in the bathtub, I put on PJs and settled in for the rest of the day. I got to spend the evening with my two youngest grandkids. My three-year-old grandson played with his race cars, and shouted, “Start your engines!” Before when he played, he called his driver Josh, after a relative he has seen race, but after the Memory Walk, he said the driver was Jim.
As our grandson played with his cars, I couldn’t help but think how much Jim enjoyed his grandkids. Jim never got to meet the three-year-old that often talks about “Grandpa Jim” and even pictures his grandpa as the tiny driver in his racing game.
Jim and I parented two wonderful sons. Our four fantastic grandchildren bring so much joy to my life. When I look at my sons and my grandkids, I know it is best that I never knew the heartbreak early onset dementia would bring to our family. I’ve been blessed with love, and the pain diminishes when compared to the dance that forever lives in my memories.
Copyright © September 2010 L. S. Fisher
http://earlyonset.blogspot.com/
Sunday, September 12, 2010
Alzheimer’s Awareness - The Color Purple
I’ve always had a love affair with the color purple which worked well when I discovered it was the Alzheimer’s color. We are gearing up for Memory Walk so I’ve gotten into the spirit by painting my fingernails and toenails purple. Not just any purple—Xtreme Wear Deep Purple.I dressed for church today in my “Walk to End Alzheimer’s” shirt and topped, or bottomed, it all off with my brand new purple high-heeled Crocs I bought at the Crocs Outlet in Branson.
It so happened that the air conditioning was broken so we shopped in heat more Xtreme than my nail polish. Perhaps, my brain was overheated when I fell in love with the purple shoes, or so my granddaughter seemed to think. She said the shoes were a little weird, but Crocs are comfortable shoes with cushiony padding underfoot that's a lot like walking around with a Memory Foam pillow tied to the bottom of your feet.
At church this morning during the “greet those around you” moment, the lady sitting behind me said she loved my shirt. On the way out the door, another lady admired my shoes.
“My granddaughter thought they were a little strange,” I admitted.
“They are such a fun color!” she said. I had to agree—but then they are purple slippers so gotta love ’em, right?
“They're comfortable too,” I added.
Getting into the purple zone is more than wearing the appropriate clothing and accessories. It is a time to fundraise and get out the word about the Memory Walk. On Labor Day, Jim’s Team raised $1,150 at our traffic stop.
Saturday some of us stood in front of Walmart handing out “Save the Date” cards and forget-me-not seed packets with the tiny sheets of paper stapled to it with walk information and contact numbers. We had a collection bucket available for donations, but our main purpose was to create awareness about the Alzheimer’s Memory Walk.
The Walk Committee has a busy week ahead. We plan to gather door prizes and last minute items. We will make a lot of last minute preparations so that everything goes smoothly on Saturday, September 18.
I’m trying not to panic because my books haven’t come in. Part of my sponsorship is signing and distributing Early Onset Blog: The Friendship Connection. The turnaround is usually a few days on book orders, but as of the last time I checked they were still “in production.”
A lot of work and planning goes into the Memory Walk and that cuts down on the chances of things going too wrong. Rain or shine, I know one thing for certain—a lot of people will be up early Saturday morning and head to the Fairgrounds for Memory Walk. Purple will be the color of the day when we grab up the banner and walk to end Alzheimer’s.
Copyright © Sept. 2010 L. S. Fisher
http://earlyonset.blogspot.com
Sunday, September 5, 2010
Labor Day: Happy to Be Busy
My mom and I recently entered a restaurant and while we stood behind the “Please Wait to Be Seated” sign, the hostess walked rapidly toward us, not letting her unusual gait slow her down. She approached us with a large, friendly smile that made her face glow.
“Two?” she asked. “How are you, today?” She struggled with the sentence.
“Fine,” I replied, “and how are you?”
“Busy!” she said, with that big smile that made you realize she wanted it that way. She was definitely busy, and as we ate our lunch, we watched her lead a steady stream of hungry people to their tables. She had found her niche. A job she was good at and took pride in doing well. It is encouraging to see people working despite an obvious handicap.
Many of us work because we have to, or as a woman I used to work with always said, “I’ve developed this really bad habit—I like to eat.”
With the Labor Day holiday, I couldn’t help but think about the 500,000 people with early onset dementia and how hard going to work each day can be for them. As dementia progresses, it erodes their self confidence as they struggle through the workday. Even getting to work can be a challenge once confusion sets in.
Unlike our hostess who had a lifetime to adapt to her challenges, people with early onset dementia find themselves in the frustrating position of losing skills that may have taken them to the top of their field. They may have skills and talents that identify their very personhood.
Jim dropped out of high school when he was fifteen years old. I once asked him how that was possible and he explained that his family followed the crops to find work. “We moved to a different state and I never enrolled in school again.”
Jim was a high school dropout, but he was an intelligent person. Later he would get his GED, but his forte was working with his hands. Jim never needed instructions to take apart and repair anything mechanical. Early in the disease when Jim was home alone while I worked, I never knew what he was going to try to “fix” during the day. One night I came home to find our VCR was completely taken apart and scattered all over the living room floor.
People with early onset dementia sometimes hide the diagnosis from their coworkers and bosses to remain in the workforce until the disease progresses to the point they cannot continue. Alzheimer’s is a slow process and depending on the proper regimen, it is not always necessary for a person to quit work immediately. It depends on the job and how accommodating the employer is. Perhaps a job can be simplified, or a person can be shifted to a less demanding position.
Each family struggles with what is best for the person with dementia. He may stubbornly refuse to admit he cannot do his job safely. I talked to a woman whose husband was a heavy equipment operator. He was the boss of his family business and was still working although his dementia was advanced. His son worked with him and knew that Dad was jeopardizing their business reputation and endangering both their lives on a daily basis.
Losing a long-term job can be emotionally and financially devastating for a family. When a loved one has dementia, the caregiver may have to quit work too. Early onset dementia takes a toll on every member of the family.
During the Labor Day celebration, take time to pause and think about all the people unemployed because of Alzheimer’s—those with the disease and those who care for them. It might make Tuesday morning seem a little brighter if you are fortunate enough to have a job. When someone asks how you are, you might reply “busy” and smile about it.
Copyright © September 2010 L. S. Fisher
http://earlyonset.blogspot.com
“Two?” she asked. “How are you, today?” She struggled with the sentence.
“Fine,” I replied, “and how are you?”
“Busy!” she said, with that big smile that made you realize she wanted it that way. She was definitely busy, and as we ate our lunch, we watched her lead a steady stream of hungry people to their tables. She had found her niche. A job she was good at and took pride in doing well. It is encouraging to see people working despite an obvious handicap.
Many of us work because we have to, or as a woman I used to work with always said, “I’ve developed this really bad habit—I like to eat.”
With the Labor Day holiday, I couldn’t help but think about the 500,000 people with early onset dementia and how hard going to work each day can be for them. As dementia progresses, it erodes their self confidence as they struggle through the workday. Even getting to work can be a challenge once confusion sets in.
Unlike our hostess who had a lifetime to adapt to her challenges, people with early onset dementia find themselves in the frustrating position of losing skills that may have taken them to the top of their field. They may have skills and talents that identify their very personhood.
Jim dropped out of high school when he was fifteen years old. I once asked him how that was possible and he explained that his family followed the crops to find work. “We moved to a different state and I never enrolled in school again.”
Jim was a high school dropout, but he was an intelligent person. Later he would get his GED, but his forte was working with his hands. Jim never needed instructions to take apart and repair anything mechanical. Early in the disease when Jim was home alone while I worked, I never knew what he was going to try to “fix” during the day. One night I came home to find our VCR was completely taken apart and scattered all over the living room floor.
People with early onset dementia sometimes hide the diagnosis from their coworkers and bosses to remain in the workforce until the disease progresses to the point they cannot continue. Alzheimer’s is a slow process and depending on the proper regimen, it is not always necessary for a person to quit work immediately. It depends on the job and how accommodating the employer is. Perhaps a job can be simplified, or a person can be shifted to a less demanding position.
Each family struggles with what is best for the person with dementia. He may stubbornly refuse to admit he cannot do his job safely. I talked to a woman whose husband was a heavy equipment operator. He was the boss of his family business and was still working although his dementia was advanced. His son worked with him and knew that Dad was jeopardizing their business reputation and endangering both their lives on a daily basis.
Losing a long-term job can be emotionally and financially devastating for a family. When a loved one has dementia, the caregiver may have to quit work too. Early onset dementia takes a toll on every member of the family.
During the Labor Day celebration, take time to pause and think about all the people unemployed because of Alzheimer’s—those with the disease and those who care for them. It might make Tuesday morning seem a little brighter if you are fortunate enough to have a job. When someone asks how you are, you might reply “busy” and smile about it.
Copyright © September 2010 L. S. Fisher
http://earlyonset.blogspot.com
Wednesday, August 25, 2010
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
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
Tuesday, August 24, 2010
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
Monday, August 16, 2010
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
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
Sunday, August 8, 2010
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
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
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