Did some event happen that made you realize your life was irrevocably changed? What is your story of that moment?
Each morning of my life, I have awakened with confidence that life will plug along on an even keel. Without warning, a few simple questions changed the course of my family’s lives.
Jim and I were at our local Nissan dealer to co-sign a loan for our son. The dealer, Kevin, asked Jim his social security number and after a few moments, Jim said, “I can’t remember it.” Jim knew his social security number well because it had been his service number for three years in the U.S. Army. It surpised me that Jim couldn't recall the number, but it didn't concern me because I have glitches with numbers all the time. I gave Kevin Jim’s social security number.
Then, Kevin asked Jim his birth date. Jim said, “I guess I don’t know that either.”
That was when we began our journey. A family in the United States begins that journey every 71 seconds. The Alzheimer’s Association estimates that more than 500,000 people in the U.S. have dementia that began before age 65, or early onset dementia.
For several months, I have worked on the Early Onset Project. My objective is to collect stories to create awareness of early onset dementia. I need approximately thirty-five true stories to complete the book. My plan is to have three sections: In Their Own Words (people with dementia), Care Partner Stories (for primary caregivers) and Family, Friends, and Professional’s Stories.
Although I extended the deadline to October 31, I do not have enough submissions. I know it’s hard to take time to write a story, but consider how much your slice-of-life story can benefit other people who have just begun the Alzheimer's journey.
Writing life stories is therapeutic for the author. It is amazing how committing your challenges to paper can begin emotional healing. I knew this instinctively, but research supports the beneficial effects of therapeutic writing. Dr. James Pennebaker’s studies have shown positive emotional and physical benefits for people who wrote about traumatic experiences for fifteen minutes, four to seven consecutive days. The participants were instructed to write their emotional reaction to the traumatic event without regard to grammar or spelling. This writing can be kept completely personal and never shared with anyone. Most participants found that by the end of the study period their writing had developed into a story.
Try it and you will be amazed at how easy it is to write a slice-of-life story and how cathartic the process will be. If you want to contribute the story to the Early Onset Project, email it to earlyonset(at)hotmail.com.
Watch for a publication date announcement for: Writing as Therapy: Rocks and Pebbles by L. S. Fisher.
Showing posts with label Early Onset Project. Show all posts
Showing posts with label Early Onset Project. Show all posts
Saturday, September 27, 2008
Sunday, June 29, 2008
Announcement: Early Onset Project Submissions Deadline Extended!
The submissions deadline for true slice-of-life stories for a book about early onset dementia has been extended to October 31, 2008. Early onset Alzheimer's begins before age 65. For complete guidelines and a sample story, please visit my website at www.lsfisher.com.
Linda Fisher
Linda Fisher
Saturday, June 7, 2008
Red Roses in a Blue Plastic Bottle
The Veterans Cemetery has a rule that during certain times of the year, live flowers in non-breakable vases are the only acceptable decorations. The day before Memorial Day, I look over the fresh flowers at Wal-Mart.
Sentimentality wins out and I purchase a half-dozen red roses to put in front of Jim’s niche. The roses may not be the most practical choice. If the day is hot, they may wilt before the ceremony is finished. But my heart is set on the red roses. A single long-stemmed red rose was Jim’s way of saying “I love you” on anniversaries, Valentine’s Day, and for no reason at all.
Do you think I could find a plastic vase in the entire Wal-Mart Supercenter? I risk my groceries to stop at Big Lots, but they don’t have any plastic vases either. At home, I find a plastic jar that I decide I can use if my last ditch stop at the Higginsville Wal-Mart ends in failure.
Once we pull off I-70 on the way to the cemetery, my sister-in-law, Ginger, and I storm into the store; two women on a mission. First we look in the obvious places and find the normal grave arrangements along a wall. Picnic supplies are jammed onto shelves nearby.
“How about these water bottles?” Ginger asked.
“They have possibilities,” I said.
The bottles are translucent red and blue, and don’t have logos or ounce markers on them. The price is good—two for $4. They look much like vases, or at least will if we remove the lids.
We put the bottles into the cart and head for the craft section where we select white wired ribbon and some decorative pebbles. In the parking lot, we take scissors to the roses and put pebbles in the bottom of the blue bottle. The arrangement seems a little top heavy so Ginger continues to stuff pebbles into the bottle on the ride to the cemetery. By the time we put a ribbon on the improvised vase, we have a red, white, and blue floral arrangement.
A light rain falls, and we think the ceremony may be cancelled. The rain dwindles off, and the stars and stripes proudly line the white fence, and the service flags atop the columbarium whip in the gusty breeze.
Of course, when I place Jim’s roses in front of his niche, I notice about half the decorations are artificial arrangements or potted plants. Jim’s roses look nice and smell good and are worth the extra effort. Ginger and I sit a stone bench for the ceremony, and watch the roses open up to embrace the day and proclaim that love is the one thing that doesn’t die.
Sentimentality wins out and I purchase a half-dozen red roses to put in front of Jim’s niche. The roses may not be the most practical choice. If the day is hot, they may wilt before the ceremony is finished. But my heart is set on the red roses. A single long-stemmed red rose was Jim’s way of saying “I love you” on anniversaries, Valentine’s Day, and for no reason at all.
Do you think I could find a plastic vase in the entire Wal-Mart Supercenter? I risk my groceries to stop at Big Lots, but they don’t have any plastic vases either. At home, I find a plastic jar that I decide I can use if my last ditch stop at the Higginsville Wal-Mart ends in failure.
Once we pull off I-70 on the way to the cemetery, my sister-in-law, Ginger, and I storm into the store; two women on a mission. First we look in the obvious places and find the normal grave arrangements along a wall. Picnic supplies are jammed onto shelves nearby.
“How about these water bottles?” Ginger asked.
“They have possibilities,” I said.
The bottles are translucent red and blue, and don’t have logos or ounce markers on them. The price is good—two for $4. They look much like vases, or at least will if we remove the lids.
We put the bottles into the cart and head for the craft section where we select white wired ribbon and some decorative pebbles. In the parking lot, we take scissors to the roses and put pebbles in the bottom of the blue bottle. The arrangement seems a little top heavy so Ginger continues to stuff pebbles into the bottle on the ride to the cemetery. By the time we put a ribbon on the improvised vase, we have a red, white, and blue floral arrangement.
A light rain falls, and we think the ceremony may be cancelled. The rain dwindles off, and the stars and stripes proudly line the white fence, and the service flags atop the columbarium whip in the gusty breeze.
Of course, when I place Jim’s roses in front of his niche, I notice about half the decorations are artificial arrangements or potted plants. Jim’s roses look nice and smell good and are worth the extra effort. Ginger and I sit a stone bench for the ceremony, and watch the roses open up to embrace the day and proclaim that love is the one thing that doesn’t die.
Saturday, May 31, 2008
Early Onset Project: Share Your Alzheimer's Stories
The Early Onset Book Project seeks submissions for a book devoted to young onset dementia. Many books have been written about Alzheimer’s, but Alzheimer’s Anthology of Unconditional Love: Early Onset Dementia will provide a rare opportunity to demonstrate how the disease affects families from different points of view. This book will bring to life the challenges of living with dementia and show the courage of persons with dementia and their families.
Writers do not need to be professionals. Stories written by the primary caregiver or the person with dementia are often the most compelling. I will edit stories, if necessary, before submitting them to the judges who will select approximately thirty stories for the collection.
The Early Onset Project is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. The book will be formatted much like Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians, with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles. Missouri advocates distributed copies of Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer’s to all Missouri legislators in Jefferson City and Washington, D.C.
During our legislative visits at the Alzheimer's Association Public Policy Forum, Sarah Wilson of the Mid-Missouri Chapter compared Alzheimer's to another disease that affects so many people. "When a family member has cancer, that person takes chemotherapy, and the rest of the family provides support for them. With Alzheimer's, it's like the whole family is taking chemotherapy."
Those of us who have lived with dementia understand that analogy. When my husband developed dementia at age 49, advocacy and writing helped me cope. He had aphasia and could not express his feelings, so I became his voice.
Writing our experiences has a cathartic effect and helps promote spiritual healing. Once we record the events and emotion, we realize we did our best and love makes us stronger than we ever thought we could be. I have a presentation on this subject and will publish a book, Writing as Therapy: Rocks and Pebbles, in 2008 or 2009.
Your personal stories give a voice to the 500,000 people with early onset dementia and their loved ones. No one can tell your story but you. Please share a slice-of-life moment with The Early Onset Project and let your voice be heard.
For more information about submissions for the Early Onset Project, visit http://www.lsfisher.com/, or www.alz.org/mid-missouri/
To download complete submissions guidelines: http://www.lsfisher.com/projectearly.html
The submissions deadline has been extended to October 31, 2008. If you have any questions, please email me at earlyonset@hotmail.com.
Writers do not need to be professionals. Stories written by the primary caregiver or the person with dementia are often the most compelling. I will edit stories, if necessary, before submitting them to the judges who will select approximately thirty stories for the collection.
The Early Onset Project is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. The book will be formatted much like Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians, with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles. Missouri advocates distributed copies of Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer’s to all Missouri legislators in Jefferson City and Washington, D.C.
During our legislative visits at the Alzheimer's Association Public Policy Forum, Sarah Wilson of the Mid-Missouri Chapter compared Alzheimer's to another disease that affects so many people. "When a family member has cancer, that person takes chemotherapy, and the rest of the family provides support for them. With Alzheimer's, it's like the whole family is taking chemotherapy."
Those of us who have lived with dementia understand that analogy. When my husband developed dementia at age 49, advocacy and writing helped me cope. He had aphasia and could not express his feelings, so I became his voice.
Writing our experiences has a cathartic effect and helps promote spiritual healing. Once we record the events and emotion, we realize we did our best and love makes us stronger than we ever thought we could be. I have a presentation on this subject and will publish a book, Writing as Therapy: Rocks and Pebbles, in 2008 or 2009.
Your personal stories give a voice to the 500,000 people with early onset dementia and their loved ones. No one can tell your story but you. Please share a slice-of-life moment with The Early Onset Project and let your voice be heard.
For more information about submissions for the Early Onset Project, visit http://www.lsfisher.com/, or www.alz.org/mid-missouri/
To download complete submissions guidelines: http://www.lsfisher.com/projectearly.html
The submissions deadline has been extended to October 31, 2008. If you have any questions, please email me at earlyonset@hotmail.com.
Saturday, March 22, 2008
Green Apple Gum
Not a day has gone by that I haven’t thought of Jim since I met him in 1968. He died almost three years ago and remains with me through memories of the life we shared. Sometimes the little things, or pebbles, become lost in the big rocks, or major events. When something triggers our thoughts, we discover a pebble hidden by the shadows.
As I exited church last Sunday, I caught the scent of green apple gum. I smiled, and I assume that everyone just thought I was happy, or being friendly. In that moment, I could feel Jim’s presence beside me, and he definitely was not happy.
When our kids were small, they thought green apple gum was the best tasting gum available. Jim would not tolerate the gum in the house, or even worse, the car.
“Who’s chewing that stinky gum!” he would shout, as he glared into the rearview mirror at the kids. The offending child would roll his window down and spit the gum out. It became a joke in the family that Jim could not tolerate the smell of green apple gum. This is a man who liked limburger cheese, which in my opinion, smells like road kill. A small piece of green apple gum made his stomach roll, and he would retch if exposed to the smell very long.
One time we drove to Kansas with our friends, Rick and Sandy. We stopped at a rest area to get gas, and Sandy who had heard of Jim’s legendary aversion to green apple gum, bought some. “This will be so funny!” she said as she paid the clerk.
“Sandy, he won’t see the humor in it,” I warned her.
As soon as Rick pulled his van out of the parking lot and headed down I-70, Sandy started shoving green apple gum into her mouth until she had such a wad of it she could hardly chew it. As soon as the smell released, Jim whipped his head around and shouted, “Who’s chewing green apple gum!”
“I am,” Sandy said meekly, aware now that it really set him off. Without being told, she opened a window and threw the gum out.
That was the last time I smelled green apple gum until Sunday at church. I shook hands with the pastor and left the building. Jim would have hunted down the person with the green apple gum and informed them they were polluting his air space. That was the Jim I knew and loved, and the one that sometimes exasperated me.
I have never chewed green apple gum, and never will. I don’t have the low tolerance for it that Jim had, but a whiff of green apple gum pelts my senses with a pebble of memory. Green apple gum triggers a random remembrance of the complex and very human man who shared my life for 37 years and still lives in my heart.
As I exited church last Sunday, I caught the scent of green apple gum. I smiled, and I assume that everyone just thought I was happy, or being friendly. In that moment, I could feel Jim’s presence beside me, and he definitely was not happy.
When our kids were small, they thought green apple gum was the best tasting gum available. Jim would not tolerate the gum in the house, or even worse, the car.
“Who’s chewing that stinky gum!” he would shout, as he glared into the rearview mirror at the kids. The offending child would roll his window down and spit the gum out. It became a joke in the family that Jim could not tolerate the smell of green apple gum. This is a man who liked limburger cheese, which in my opinion, smells like road kill. A small piece of green apple gum made his stomach roll, and he would retch if exposed to the smell very long.
One time we drove to Kansas with our friends, Rick and Sandy. We stopped at a rest area to get gas, and Sandy who had heard of Jim’s legendary aversion to green apple gum, bought some. “This will be so funny!” she said as she paid the clerk.
“Sandy, he won’t see the humor in it,” I warned her.
As soon as Rick pulled his van out of the parking lot and headed down I-70, Sandy started shoving green apple gum into her mouth until she had such a wad of it she could hardly chew it. As soon as the smell released, Jim whipped his head around and shouted, “Who’s chewing green apple gum!”
“I am,” Sandy said meekly, aware now that it really set him off. Without being told, she opened a window and threw the gum out.
That was the last time I smelled green apple gum until Sunday at church. I shook hands with the pastor and left the building. Jim would have hunted down the person with the green apple gum and informed them they were polluting his air space. That was the Jim I knew and loved, and the one that sometimes exasperated me.
I have never chewed green apple gum, and never will. I don’t have the low tolerance for it that Jim had, but a whiff of green apple gum pelts my senses with a pebble of memory. Green apple gum triggers a random remembrance of the complex and very human man who shared my life for 37 years and still lives in my heart.
Sunday, March 16, 2008
How to Find Trusted Information about Alzheimer’s
He pushed the speed dial on his cell phone to call his stock broker and said, “Check and see if my stock sold today.” He rattled off his account number and the stock symbol. “What do you mean, you don’t know? Just look it up on your computer.”
“You need to talk to my manager, and he is on the phone.”
“How long will he be on the phone?” he asked, irritated that he didn’t get the information he wanted. “OK, I’ll call back later.” As he touched the disconnect button, the display showed he had been talking to Days Inn.
With today’s technology, we have information at our fingertips that once took hours of intense research. The problem is that sometimes the information is incorrect or incomplete.
Enter “Alzheimer’s” into Google, you get 14 million hits. How do you determine which websites contain accurate and truthful information? Sometimes websites look official, but they aren’t. Domain names are distributed on a first come, first serve basis and the names are sometimes intentionally deceptive.
The Alzheimer’s Association is the largest private nonprofit funding resource for Alzheimer research. With 300 points of service in the U.S., you can contact your local chapter for support. To find the closest chapter and trusted information on Alzheimer’s, visit the Alzheimer’s Association’s website at http://www.alz.org/.
If you are traveling and need a room reservation, call Days Inn. But if you need care consultation or immediate information about Alzheimer’s, call their 24/7 Helpline at 1-800-272-3900.
“You need to talk to my manager, and he is on the phone.”
“How long will he be on the phone?” he asked, irritated that he didn’t get the information he wanted. “OK, I’ll call back later.” As he touched the disconnect button, the display showed he had been talking to Days Inn.
With today’s technology, we have information at our fingertips that once took hours of intense research. The problem is that sometimes the information is incorrect or incomplete.
Enter “Alzheimer’s” into Google, you get 14 million hits. How do you determine which websites contain accurate and truthful information? Sometimes websites look official, but they aren’t. Domain names are distributed on a first come, first serve basis and the names are sometimes intentionally deceptive.
The Alzheimer’s Association is the largest private nonprofit funding resource for Alzheimer research. With 300 points of service in the U.S., you can contact your local chapter for support. To find the closest chapter and trusted information on Alzheimer’s, visit the Alzheimer’s Association’s website at http://www.alz.org/.
If you are traveling and need a room reservation, call Days Inn. But if you need care consultation or immediate information about Alzheimer’s, call their 24/7 Helpline at 1-800-272-3900.
Sunday, March 9, 2008
Alzheimer's Anthology of Unconditional Love
Alzheimer’s Anthology of Unconditional Love is a collection of thirty-seven true stories about Missourians who have embarked upon an unwilling journey into an uncharted world toward a future different than the one envisioned. It is the death of dreams, plans, and the birth of unconditional love. The stories capture the effect Alzheimer’s has on caregivers, sons, daughters, in-laws, friends, children, grandchildren, and healthcare workers. The collection includes two stories from persons diagnosed with early onset Alzheimer’s. The writers range from a Pulitzer Prize nominee to unpublished authors. For those beginning the journey, these true storieswill help them realize they are not alone.
Available at amazon.com, BarnesandNoble.com, and at Missouri Barnes and Noble stores. Signed copies available at www.lsfisher.com
Saturday, March 8, 2008
Alzheimer's: The Power of Our Words
I saw a demonstration of how much our words and thoughts affect others. The speaker, Travis Mathes, asked for a volunteer, and a self-confident business man, Daryl, came forward. Travis asked Daryl to hold his arms outstretched to his sides and resist his attempts to force his arms down. Then he asked Daryl to lower his arms, looked him in the eye, and said, “You are ugly, you are stupid, you are worthless…”
After about eight derogatory statements, Travis asked Daryl to hold his arms out and without using any more force than the first time, easily pushed Daryl’s arms down. Daryl’s take on it, “Wow, that was weird!”
This demonstration shows how our words can demoralize another person into a position of weakness. Travis immediately said eight positive things, and Daryl had the strength to resist the pressure on his arms.
After Daryl sat down, Travis asked a woman to come forward. Instead of saying anything to her, he simply asked her to look into his eyes for about a minute. He easily pushed her arms down. They made eye contact again, and this time his attempt failed. The difference? The first time, he thought the same things he said to Daryl. The second time, he thought positive, flattering thoughts.
We have often heard how our tone of voice and body language can affect people with Alzheimer’s. Even if their communication skills have degraded, our tone of voice conveys whether we are complimenting them or degrading them. If we speak to our loved ones with dementia in a positive tone with words that make them feel good about themselves, they will be stronger emotionally and physically. If we scold them or disparage their value as a human being, they become weaker and downtrodden.
Medical science cannot develop medicine as powerful as our words, attitude, and body language when it comes to preserving quality of life for ourselves and our loved ones with Alzheimer’s. The power is within each of us to encourage and positively influence our loved ones. It can be something as simple as saying, “You smell great today. You have a beautiful smile. I love you.”
Don’t get me wrong. I understand being a caregiver is challenging, and at certain times you may find yourself incapable of positive thoughts or words. At those times, find a mirror, look into your own eyes, and say, “I’m doing my best. I am a good caregiver.” Your words will make you strong.
Thank you, Travis, for the eye-opening demonstration.
To contact Travis Mathes for a speaking engagement, email mathest@marktwain.net
After about eight derogatory statements, Travis asked Daryl to hold his arms out and without using any more force than the first time, easily pushed Daryl’s arms down. Daryl’s take on it, “Wow, that was weird!”
This demonstration shows how our words can demoralize another person into a position of weakness. Travis immediately said eight positive things, and Daryl had the strength to resist the pressure on his arms.
After Daryl sat down, Travis asked a woman to come forward. Instead of saying anything to her, he simply asked her to look into his eyes for about a minute. He easily pushed her arms down. They made eye contact again, and this time his attempt failed. The difference? The first time, he thought the same things he said to Daryl. The second time, he thought positive, flattering thoughts.
We have often heard how our tone of voice and body language can affect people with Alzheimer’s. Even if their communication skills have degraded, our tone of voice conveys whether we are complimenting them or degrading them. If we speak to our loved ones with dementia in a positive tone with words that make them feel good about themselves, they will be stronger emotionally and physically. If we scold them or disparage their value as a human being, they become weaker and downtrodden.
Medical science cannot develop medicine as powerful as our words, attitude, and body language when it comes to preserving quality of life for ourselves and our loved ones with Alzheimer’s. The power is within each of us to encourage and positively influence our loved ones. It can be something as simple as saying, “You smell great today. You have a beautiful smile. I love you.”
Don’t get me wrong. I understand being a caregiver is challenging, and at certain times you may find yourself incapable of positive thoughts or words. At those times, find a mirror, look into your own eyes, and say, “I’m doing my best. I am a good caregiver.” Your words will make you strong.
Thank you, Travis, for the eye-opening demonstration.
To contact Travis Mathes for a speaking engagement, email mathest@marktwain.net
Saturday, March 1, 2008
Young/Early Onset Dementia
My head is still spinning from my conversation last Friday with Connie Wasserman, Program Director of Senior Services, Sid Jacobson Jewish Community Center, East Hills, NY. Connie is a dynamic lady dedicated to improving quality of life for young onset individuals. Yes, she refers to those with dementia that began before age 65 as young onset.
Connie told me that the first time she attended a roundtable discussion about early onset dementia, half of the people attending mistakenly thought “early onset” was synonymous with “early stage.” The terms are confusing!
Early stage has nothing to do with age; it refers to the stage of the disease. In the early stages of Alzheimer’s, a person may exhibit personality changes or memory loss that affects job performance, show lapses in judgment, demonstrate difficulty remembering words or names, and could have problems handling money or paying bills.
Early onset means the disease has been recognized in a person who is younger than 65 years old. The Alzheimer’s Association estimates that 500,000 people in the United States have early onset dementia.
People with young onset dementia require stimulation to improve the quality of their lives. Connie described Sid Jacobson’s “Let’s Do Lunch” program. In addition to lunch, participants enjoy music therapy, step aerobics, art therapy, and a creative writing program. This adult day program for young people in the moderate stage of a neurodegenerative disease is innovative and carefully developed.
Connie and I share a mission to advocate for better lives for those with dementia. I have begun to collect stories for the Early Onset Project, which will provide an opportunity for those with early, or young, onset to share their stories. In addition to compelling slice-of-life stories, the book will contain informational articles. Connie plans to write an article for the Early Onset Project about their programs for young onset individuals.
If you or someone you love has early onset dementia, you will agree with Connie Wasserman that “this population is more than underserved—it is non-served.” Let’s hope the ripple in New York turns into a tidal wave of recognition and ACTION toward improving quality of life for those with early onset dementia.
To watch a video and for information about the young onset programs visit http://www.sjcc.org/
For complete submissions guidelines for the Early Onset Book Project visit my website at http://www.lsfisher.com/ and click on the Early Onset Project link.
Connie told me that the first time she attended a roundtable discussion about early onset dementia, half of the people attending mistakenly thought “early onset” was synonymous with “early stage.” The terms are confusing!
Early stage has nothing to do with age; it refers to the stage of the disease. In the early stages of Alzheimer’s, a person may exhibit personality changes or memory loss that affects job performance, show lapses in judgment, demonstrate difficulty remembering words or names, and could have problems handling money or paying bills.
Early onset means the disease has been recognized in a person who is younger than 65 years old. The Alzheimer’s Association estimates that 500,000 people in the United States have early onset dementia.
People with young onset dementia require stimulation to improve the quality of their lives. Connie described Sid Jacobson’s “Let’s Do Lunch” program. In addition to lunch, participants enjoy music therapy, step aerobics, art therapy, and a creative writing program. This adult day program for young people in the moderate stage of a neurodegenerative disease is innovative and carefully developed.
Connie and I share a mission to advocate for better lives for those with dementia. I have begun to collect stories for the Early Onset Project, which will provide an opportunity for those with early, or young, onset to share their stories. In addition to compelling slice-of-life stories, the book will contain informational articles. Connie plans to write an article for the Early Onset Project about their programs for young onset individuals.
If you or someone you love has early onset dementia, you will agree with Connie Wasserman that “this population is more than underserved—it is non-served.” Let’s hope the ripple in New York turns into a tidal wave of recognition and ACTION toward improving quality of life for those with early onset dementia.
To watch a video and for information about the young onset programs visit http://www.sjcc.org/
For complete submissions guidelines for the Early Onset Book Project visit my website at http://www.lsfisher.com/ and click on the Early Onset Project link.
Saturday, February 16, 2008
Alzheimer's Advocates
On Memory Day, hundreds of Missouri advocates will converge on our state capitol to urge our senators and representatives to support legislation to help our fellow Missourians with Alzheimer’s and their families. On March 12, Missouri advocates will distribute copies of Alzheimer's Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer's to our state legislators.
As a long-time advocate, I know personal stories make a greater impact on legislators than statistics. The book contains 37 true stories, but even if legislators read only the title, they will realize that 110,000 Missourians are living with dementia.
Many books have been written about Alzheimer’s, but this type of anthology gives a rare opportunity to show how the disease affects families from different points of view. This book brings to life the challenges of living with dementia and shows the courage of persons with dementia and their families as they adjust their lives to accommodate dementia.
Now, the Early Onset Book Project seeks submissions for a book devoted to young onset dementia. This is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. This book will be formatted much like the Missouri book with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles.
Writers do not need to be professionals! In fact, stories written by the primary caregiver or the person with dementia are the most compelling. I will edit stories, if necessary, before submitting them to the judges. The deadline is June 30, but I certainly hope most stories are submitted well in advance of the deadline so proper editing will give them the best chance of being selected for the book.
The Alzheimer’s Association estimates that approximately 500,000 Americans have dementia that began before age 65. My vision is that the Early Onset Dementia book will make a huge impact on legislators at every state level and in Washington, DC.
One definition of advocate is, “A person who pleads on behalf of another.” Your compelling slice-of-life stories help convince legislators of the need for increased National Institute of Health research funds to find a cure for Alzheimer’s.
Are you an Alzheimer’s advocate? If you aren’t, you should consider becoming one by sharing your story with this project.
As a long-time advocate, I know personal stories make a greater impact on legislators than statistics. The book contains 37 true stories, but even if legislators read only the title, they will realize that 110,000 Missourians are living with dementia.
Many books have been written about Alzheimer’s, but this type of anthology gives a rare opportunity to show how the disease affects families from different points of view. This book brings to life the challenges of living with dementia and shows the courage of persons with dementia and their families as they adjust their lives to accommodate dementia.
Now, the Early Onset Book Project seeks submissions for a book devoted to young onset dementia. This is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. This book will be formatted much like the Missouri book with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles.
Writers do not need to be professionals! In fact, stories written by the primary caregiver or the person with dementia are the most compelling. I will edit stories, if necessary, before submitting them to the judges. The deadline is June 30, but I certainly hope most stories are submitted well in advance of the deadline so proper editing will give them the best chance of being selected for the book.
The Alzheimer’s Association estimates that approximately 500,000 Americans have dementia that began before age 65. My vision is that the Early Onset Dementia book will make a huge impact on legislators at every state level and in Washington, DC.
One definition of advocate is, “A person who pleads on behalf of another.” Your compelling slice-of-life stories help convince legislators of the need for increased National Institute of Health research funds to find a cure for Alzheimer’s.
Are you an Alzheimer’s advocate? If you aren’t, you should consider becoming one by sharing your story with this project.
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