The whistle makes a soothing mournful sound in the coach section of Amtrak. The rain snakes across the windows blurring the trees with their tease of green. Water pools in every dip of land from the April rain that has been falling for the past two days. Miniature lakes are surrounded by grassy meadows. The Missouri River is grey and turbulent from the flooding streams. A barge pushes a load beneath the grey metal structure of a bridge.
The leisurely train ride affords a chance for people, like me, who take advantage of every quiet moment, to write. My laptop fits nicely on the tray and an electrical outlet lets me work long after a battery would shut down. I spend most of the twelve hour ride from Sedalia to Chicago working on a new book, Writing as Therapy: Rocks and Pebbles.
As the train passes through small towns and past St. Louis, I think about how this leisurely mode of travel would have suited Jim. He inherited wanderlust from his parents’ vagabond lifestyle and was happiest on the road. Jim always said the best part of any journey was traveling down the highway. He was just as happy throwing a sleeping bag on the ground as he was staying in a motel. Jim preferred travel by car much more than flying, and I know he would have enjoyed the train ride.
Although the train outpaces the trucks on the interstate, train travel is not for those a tight deadline or people with no patience. Sometimes the train pulls to a side track and waits for a freight train to pass. Or, may even back up and hook onto a train having engine trouble and pull them along to their next stop. Sometimes cranky children cry or someone shouts into his cell phone and disturbs the quiet. Most of the time, it is peaceful and the seats are comfortable.
Something about the train makes me long for the days when Jim taught me to think about the journey and not just the destination. When the whistle blows, the sound makes me lonesome for those youthful days. The rain weeps, but I smile in remembrance of our journeys.
Sunday, April 27, 2008
Wednesday, April 9, 2008
L. S. Fisher, Alzheimer's Anthology: Book Signing at Barnes and Noble, Columbia, MO, April 13
Linda Fisher, Author
Alzheimer’s Anthology of Unconditional Love
Invites YOU to a Book Signing
Barnes and Noble
Columbia, MO
Sunday, April 13
1:30 – 3:30 PM
A Voice for Missourians with Alzheimer’s
In Missouri, an estimated 110,000 people have Alzheimer’s or a related disorder. Caregivers, family, and friends bring the number of Missourians directly impacted by the disease to more than a half-million.
Alzheimer’s Anthology of Unconditional Love
Invites YOU to a Book Signing
Barnes and Noble
Columbia, MO
Sunday, April 13
1:30 – 3:30 PM
A Voice for Missourians with Alzheimer’s
In Missouri, an estimated 110,000 people have Alzheimer’s or a related disorder. Caregivers, family, and friends bring the number of Missourians directly impacted by the disease to more than a half-million.
Alzheimer’s had never affected anyone close to me until my husband Jim began his downward spiral into the abyss of dementia. A diagnosis of Alzheimer’s is frightening and the prognosis is devastating. Alzheimer’s has remained a mystery, the cure illusive.
How could Jim have dementia when he was only 49 years old? The concept was unfathomable that small mental glitches could escalate into massive cell death that would erase my husband’s memory and skills. Jim once repaired our van with a piece of baling wire, but two years into the disease he could not focus enough to screw in a light bulb, twisting it first one way and then another.
Jim was a talented singer and musician who could play a multitude of stringed instruments. Eventually he could not play his guitar, and his voice was stilled by aphasia.
Alzheimer's Anthology of Unconditional Love is a collection of stories that give a voice to Missourians who have experienced this life altering disease. When our loved one has dementia, we embark upon an unwilling journey into an uncharted world. It is the death of our dreams, our plans, and the birth of unconditional love. Alzheimer’s brings about role reversals as we struggle to provide care for people who once took care of us.
The stories in the collection capture the effect Alzheimer’s has on caregivers, sons, daughters, in-laws, children, grandchildren, and healthcare workers. The writers range from a Pulitzer Prize nominee to unpublished authors.
Tracy Mobley, diagnosed at 38, wrote a story filled with humor and laced with the tragedy Alzheimer’s has brought to her family. Charles Schneider describes the shock of being diagnosed with early onset Alzheimer’s.
For those beginning the journey, these true slice-of-life stories will help them realize they are not alone. We all walk together, holding hands, giving each other hugs and encouragement.
I look forward to seeing you April 13 at the Columbia Barnes and Noble Bookstore.
Linda Fisher
Saturday, April 5, 2008
Everybody’s Talking
I visited my sister-in-law in the hospital yesterday. I left her room and outside the door a lady sat on a bench, cell phone to her ear carrying on a lively conversation. Around the corner through a patient’s open door, I saw an elderly woman’s visitor talking into her cell phone. About half the people you see in Wal-Mart are talking on cell phones. With more than 219 million active cell phones in the United States, that’s a lot of conversation.
Cell phones are everywhere. Ringtones interrupt sermons, speeches, training, work, corporate board meetings, live theatre, movies, and funerals as people forget to turn off their electronic devices. I was at a conference one time where the announcement was made, “If your cell phone rings, you pay $5.” The speaker was the first person to pay.
Cell phone plans provide an economical way to stay in touch with family and friends. With free nights and weekends it is easier to communicate with everyone you love.
When you talk to someone with Alzheimer’s, phone conversations can be deceptive. Often people with dementia continue to carry on polite conversation and give yes and no answers. It is frustrating for caregivers and family who live close by when the long distance relatives say, “Dad sounds fine to me. I think you are overreacting.”
Early in Jim’s disease, he always forgot to relay phone messages, so we installed caller ID. When he talked on the phone, he could make polite conversation. Even people who knew him well might not notice anything strange about his conversation. He interjected “I’m just fine,” “You don’t say?” and other polite phrases at appropriate intervals. After he hung up the phone, I would ask who he had been talking to, and his response was usually, “I have no idea” or “You know them.”
Our satellite TV account was in Jim’s name, and they called constantly with offers to upgrade our package. Jim always said yes, and when I called to cancel the expensive channels, they didn’t want to talk to me. Jim died three years ago, and I still can’t get his name off the account but they finally added mine.
I frequently receive phone calls offering me truck driving jobs. Just a few days ago an upbeat male voice said, “We just reviewed your resume and have an excellent truck driving job for you.” I did not submit a resume, but I am listed in the city directory with an occupation of driver. I’m pretty sure that information came from Jim, because after he could no longer drive, he referred to me as his “driver.”
While I worked on my blog post today, I received a phone call from Karen Waterhouse who plans to submit a story for the Early Onset Project. Karen has benefited from a combination of traditional medical treatment and a combination of herbs. She told me about the 22nd Annual Alzheimer’s and Related Dementia Wisconsin State Conference she will be attending in May.
Karen called because she could not find my email address. Just as we ended our conversation, she said, “I have a plan on my cell phone so it doesn’t cost me to call on weekends.”
To hear Karen’s voice, feel her energy and optimism, made my day. I’m so thankful that I have gotten to know so many people with early onset dementia. These personal friends keep me motivated to continue advocating for a cure for Alzheimer’s in a way that statistics never could.
The ability to communicate with family and friends needs to be weighed against the cacophony of disruptive ringing cell phones. So, if I walk past you in Wal-Mart with my cell phone to my ear, I just might be involved in an important conversation.
Cell phones are everywhere. Ringtones interrupt sermons, speeches, training, work, corporate board meetings, live theatre, movies, and funerals as people forget to turn off their electronic devices. I was at a conference one time where the announcement was made, “If your cell phone rings, you pay $5.” The speaker was the first person to pay.
Cell phone plans provide an economical way to stay in touch with family and friends. With free nights and weekends it is easier to communicate with everyone you love.
When you talk to someone with Alzheimer’s, phone conversations can be deceptive. Often people with dementia continue to carry on polite conversation and give yes and no answers. It is frustrating for caregivers and family who live close by when the long distance relatives say, “Dad sounds fine to me. I think you are overreacting.”
Early in Jim’s disease, he always forgot to relay phone messages, so we installed caller ID. When he talked on the phone, he could make polite conversation. Even people who knew him well might not notice anything strange about his conversation. He interjected “I’m just fine,” “You don’t say?” and other polite phrases at appropriate intervals. After he hung up the phone, I would ask who he had been talking to, and his response was usually, “I have no idea” or “You know them.”
Our satellite TV account was in Jim’s name, and they called constantly with offers to upgrade our package. Jim always said yes, and when I called to cancel the expensive channels, they didn’t want to talk to me. Jim died three years ago, and I still can’t get his name off the account but they finally added mine.
I frequently receive phone calls offering me truck driving jobs. Just a few days ago an upbeat male voice said, “We just reviewed your resume and have an excellent truck driving job for you.” I did not submit a resume, but I am listed in the city directory with an occupation of driver. I’m pretty sure that information came from Jim, because after he could no longer drive, he referred to me as his “driver.”
While I worked on my blog post today, I received a phone call from Karen Waterhouse who plans to submit a story for the Early Onset Project. Karen has benefited from a combination of traditional medical treatment and a combination of herbs. She told me about the 22nd Annual Alzheimer’s and Related Dementia Wisconsin State Conference she will be attending in May.
Karen called because she could not find my email address. Just as we ended our conversation, she said, “I have a plan on my cell phone so it doesn’t cost me to call on weekends.”
To hear Karen’s voice, feel her energy and optimism, made my day. I’m so thankful that I have gotten to know so many people with early onset dementia. These personal friends keep me motivated to continue advocating for a cure for Alzheimer’s in a way that statistics never could.
The ability to communicate with family and friends needs to be weighed against the cacophony of disruptive ringing cell phones. So, if I walk past you in Wal-Mart with my cell phone to my ear, I just might be involved in an important conversation.
Sunday, March 30, 2008
Walk a Mile in My Skechers
I usually don’t look at the J C Penney One Day Only sales because I can almost always find a “must have” item, usually shoes. I am especially susceptible to buy-one-and-get-one-half-price shoe sales. Can you believe one of those sales was going on today? Wouldn’t you know they had a picture of a pair of white Skechers similar to the two black pair and burgundy ones I own and love?
So, like a true shoeaholic, I entered Penney’s holding my four-year-old granddaughter’s hand. After a cursory look at clothing, we meandered to the shoe department. On prominent display was not just ONE pair of Sketchers different from the ones I had, but FOUR.
“I would like to try these, these, these, and these,” I told the sales clerk.
While the clerk searched the storeroom for the shoes in my size, my granddaughter selected a pair of pink house slippers with a fluff of fur and Disney princesses on the toes.
We found a bench to try on our shoes. I slipped off the burgundy Skechers I was wearing to try on the natural colored pair with a lacy pattern. “The mirror is over there,” the sales clerk said.
“Those look cool with your black socks, Grandma Linda!” My granddaughter said with the enthusiasm of the very young. She pronounced the white pair with mesh ventilation and the black lacy pair as “Cool!”
I tried on a shiny brocade shoe with a water lily design, and my granddaughter said, “Those are precious, Grandma Linda!” She smiled at me, her face lit with joy, a beautiful child in a pink glitzy shirt, with silky blonde hair held back in with a poofy pink bow. I felt a pang that because of Jim’s dementia, he never had the opportunity to share these happy moments with his grandchildren.
Sometimes when I was immersed in the daily responsibilities of caregiving, I felt my joy had been stolen. When someone who had never taken care of a person with dementia offered simplistic views or started a sentence with “If I were you,” I knew that even if they walked a mile in my shoes, they could not begin to grasp the heartbreak of being a caregiver.
Yet, love for my family made me realize that life goes on, and many, many happy moments are yet to come. The sales clerk and I smiled at the Skechers being described as “precious.”
“OK, precious or cool? I’m only buying two pair. You are my fashion consultant, and I want to know which two pair to buy.”
Without the slightest hesitation, she pointed to the white mesh pair, “Those, and,” pointing to the natural pair, “those.”
“Not the precious ones?” I asked, running my fingers along the silky finish of the shoes.
“No. The cool ones.” Well grandmas want to be cool.
I left the store with a bulging bag of shoes and could easily walk a mile in my cool pair of Skechers along a path where moments of joy pop up like wildflowers to remind me how precious life is.
So, like a true shoeaholic, I entered Penney’s holding my four-year-old granddaughter’s hand. After a cursory look at clothing, we meandered to the shoe department. On prominent display was not just ONE pair of Sketchers different from the ones I had, but FOUR.
“I would like to try these, these, these, and these,” I told the sales clerk.
While the clerk searched the storeroom for the shoes in my size, my granddaughter selected a pair of pink house slippers with a fluff of fur and Disney princesses on the toes.
We found a bench to try on our shoes. I slipped off the burgundy Skechers I was wearing to try on the natural colored pair with a lacy pattern. “The mirror is over there,” the sales clerk said.
“Those look cool with your black socks, Grandma Linda!” My granddaughter said with the enthusiasm of the very young. She pronounced the white pair with mesh ventilation and the black lacy pair as “Cool!”
I tried on a shiny brocade shoe with a water lily design, and my granddaughter said, “Those are precious, Grandma Linda!” She smiled at me, her face lit with joy, a beautiful child in a pink glitzy shirt, with silky blonde hair held back in with a poofy pink bow. I felt a pang that because of Jim’s dementia, he never had the opportunity to share these happy moments with his grandchildren.
Sometimes when I was immersed in the daily responsibilities of caregiving, I felt my joy had been stolen. When someone who had never taken care of a person with dementia offered simplistic views or started a sentence with “If I were you,” I knew that even if they walked a mile in my shoes, they could not begin to grasp the heartbreak of being a caregiver.
Yet, love for my family made me realize that life goes on, and many, many happy moments are yet to come. The sales clerk and I smiled at the Skechers being described as “precious.”
“OK, precious or cool? I’m only buying two pair. You are my fashion consultant, and I want to know which two pair to buy.”
Without the slightest hesitation, she pointed to the white mesh pair, “Those, and,” pointing to the natural pair, “those.”
“Not the precious ones?” I asked, running my fingers along the silky finish of the shoes.
“No. The cool ones.” Well grandmas want to be cool.
I left the store with a bulging bag of shoes and could easily walk a mile in my cool pair of Skechers along a path where moments of joy pop up like wildflowers to remind me how precious life is.
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 23, 2008
Joel Osteen Unleashes Hope and Inspiration in Kansas City
Joel Osteen ministries unleashed hope and inspiration in Kansas City last night. Joel has the God-given talent to make millions believe in the premise of his books, “Live Your Best Life Now” and “Become a Better You.”
At Kansas City’s Night of Hope, a packed Kemper Arena learned the limited scope of Joel Osteen’s half-hour TV broadcast. During a longer worship service, the music is lively, uplifting, and the singers actually jump up and down while they sing. They must be young, or they would surely be out of breath.
Joel’s wife, Victoria, shares a message that is relevant for anyone dealing with Alzheimer’s. She speaks of unconditional love and how inner happiness begins with loving your own family. She says that to demonstrate your love for your family, celebrate daily moments instead of waiting for major events. Victoria drinks one cup of coffee in the morning and although he doesn’t drink coffee, Joel fixes coffee for her and sometimes brings it to her in bed. This small act of kindness shows his love for her.
I personally identify with Victoria’s coffee story. Always the early riser, Jim required a cup of coffee and no obstacle ever interfered with his morning ritual. Once he brewed a pot on our camp stove in a hospital parking lot, and another time, hiked across a busy St. Louis interstate to McDonald’s because the hotel coffee shop did not open until the ridiculously late hour of 6:00 a.m. All I had to do was snuggle beneath warm covers and he would bring me my first cup of coffee in bed, complete with creamer, just the way I liked it. It was just one of the ways Jim showed he loved me.
As dementia clouded Jim’s abilities, he became more dependent on me, and I was blessed to return some of the consideration and care he had always shown me. One time I went to the Alzheimer’s Association Public Policy Forum and was dismayed when I returned to find no one had shaved Jim during my absence. His mother told me Jim pushed away the nurses’ aide who tried to shave him and struggled through his voice-stealing aphasia to say, “No! Linda.” Shaving him was a small daily celebration of our love, and no nurses’ aide would pat Old Spice onto his smooth cheeks the same way I did.
When someone you love has Alzheimer’s you have daily opportunities to celebrate your unconditional love. If you face each breaking dawn with inner hope and a conviction that each day is too precious to waste, you will find a Joel Osteen type of inspiration to “Live Your Best Life Now.”
At Kansas City’s Night of Hope, a packed Kemper Arena learned the limited scope of Joel Osteen’s half-hour TV broadcast. During a longer worship service, the music is lively, uplifting, and the singers actually jump up and down while they sing. They must be young, or they would surely be out of breath.
Joel’s wife, Victoria, shares a message that is relevant for anyone dealing with Alzheimer’s. She speaks of unconditional love and how inner happiness begins with loving your own family. She says that to demonstrate your love for your family, celebrate daily moments instead of waiting for major events. Victoria drinks one cup of coffee in the morning and although he doesn’t drink coffee, Joel fixes coffee for her and sometimes brings it to her in bed. This small act of kindness shows his love for her.
I personally identify with Victoria’s coffee story. Always the early riser, Jim required a cup of coffee and no obstacle ever interfered with his morning ritual. Once he brewed a pot on our camp stove in a hospital parking lot, and another time, hiked across a busy St. Louis interstate to McDonald’s because the hotel coffee shop did not open until the ridiculously late hour of 6:00 a.m. All I had to do was snuggle beneath warm covers and he would bring me my first cup of coffee in bed, complete with creamer, just the way I liked it. It was just one of the ways Jim showed he loved me.
As dementia clouded Jim’s abilities, he became more dependent on me, and I was blessed to return some of the consideration and care he had always shown me. One time I went to the Alzheimer’s Association Public Policy Forum and was dismayed when I returned to find no one had shaved Jim during my absence. His mother told me Jim pushed away the nurses’ aide who tried to shave him and struggled through his voice-stealing aphasia to say, “No! Linda.” Shaving him was a small daily celebration of our love, and no nurses’ aide would pat Old Spice onto his smooth cheeks the same way I did.
When someone you love has Alzheimer’s you have daily opportunities to celebrate your unconditional love. If you face each breaking dawn with inner hope and a conviction that each day is too precious to waste, you will find a Joel Osteen type of inspiration to “Live Your Best Life Now.”
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