HOPE for Alzheimer’s

More than five million Americans have Alzheimer’s disease including 110,000 Missourians. With 10,000 baby boomers turning 65 each day, cases of Alzheimer’s are expected to skyrocket.

Alzheimer’s is the most expensive disease and has a negative impact on our nation’s economy. Alzheimer’s disease cost the nation $203 billion in 2013, and by 2050 it is expected to reach $1.2 trillion annually. The rising costs for Alzheimer’s care and services threaten to bankrupt Medicare and Medicaid. Alzheimer’s takes a toll on families—both financial and emotional.

News of a blood test to predict who will develop Alzheimer’s disease has been met with excitement and trepidation. By identifying those at risk for Alzheimer’s, researchers might find success with medications that have not worked in the later stages. New insights into how Alzheimer’s affects the brain would help researchers understand the disease better.

Without a cure, prevention, or effective treatment, the question arises—who would want to know if they were going to develop Alzheimer’s? Currently, fifty percent of Americans who have Alzheimer’s do not know they have the disease, but nearly ninety percent want to know if they have the disease. 

The Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act would provide Medicare services to diagnose Alzheimer’s disease. Early diagnosis would allow people to get their affairs in order while they had the capacity to do so. They could make lifestyle changes that research indicates could delay the onset. A healthy diet, exercise, and remaining socially engaged has many health benefits and has long been considered a boost for cognition.

The HOPE Act addresses problems with how the healthcare system currently works. Once a person has been diagnosed, HOPE for Alzheimer’s ensures that the newly diagnosed person and care providers will receive vital information with treatment options and support services available.  

This Act promotes open communication between patient, the medical team, and caregiver. It would require documentation of the diagnostic evaluation to be provided in the patient’s medical record. This is a huge improvement! With the complete medical history in hand, care providers can help manage other diseases the person with dementia might have.  

When my husband developed dementia at 49, the diagnostic process was lengthy. I kept a log of his symptoms, medications, drug reactions, and other health concerns. I shared this list with the many physicians involved in diagnosing and treating him. Not having this information would have adversely affected his care.

Being a caregiver for a loved one with dementia is a life-changing situation. Jim’s dementia is the reason I have been an advocate on state and national levels for the past fifteen years.

In April, my sister, Roberta Fischer and I will join more than 750 Alzheimer’s advocates in Washington, D.C. for the Advocacy Forum. Along with other Missouri advocates, we will visit Senator Roy Blunt (R), Senator Claire McCaskill (D), and Representative Vicky Hartzler (R). The fight to end Alzheimer’s is a bipartisan effort.

When legislation that makes so much common sense comes along, it is time for everyone who has experienced Alzheimer’s firsthand to write that email, make a phone call, or drop by a district office. I urge you to join your voice to ours by contacting your U.S. senators (S 709) and U.S. representative (HR 1507) and ask them to co-sponsor the HOPE for Alzheimer’s Act.

No one should ever be without HOPE.

copyright © March 2014 by L. S. Fisher

www.earlyonset.blogspot.com

Eric Rill: An Absent Mind

I often receive offers to endorse products or promote others’ agendas on my blog. I usually ignore or decline these offers. Recently, Maria Corder with Avante Press asked if I would like to read An Absent Mind, a novel about Alzheimer’s scheduled for a March 2014 release. I asked for an electronic version to read.

I am an avid reader and often have a couple of novels going at the same time. It so happened that I was reading two thrillers when she sent the manuscript to me. I downloaded the book onto my Kindle and hoped to get to it before long.

It takes an intriguing novel to get me to put aside a James Patterson book. When I opened An Absent Mind, I was hooked from the beginning when Saul Reimer began to tell his story:  “I was always considered a bit peculiar, so no one probably suspected anything until a dreary October afternoon when I removed my gray flannel trousers, opened the front door of my house, and ambled down the street.”

The most compelling dimension of this novel is the intertwining of the perspectives of Saul’s family—his wife Monique, his dependable daughter Florence, his narcissistic son Joey, and Dr. Tremblay. Each family member’s story unfolds as the Alzheimer’s diagnosis changes their lives, their relationships with each other, as well as with Saul. An Absent Mind does justice to exploring the thoughts, motivations, fears, and emotions of a person with dementia and his family members.

Saul takes you into the heart of a person who knows something is going terribly wrong. We feel his fear of what is going to happen, and his suspicion of family, especially Monique, plotting against him. Saul’s unfiltered views are often humorous as he makes observations about his family. About Joey, he says,  “…except Joey, who can’t sit for more than the time it takes him to gulp down a milk shake. I often wonder what happens when he’s in the bathroom. With his attention span, he probably can’t sit still until it’s time to reach for the toilet paper.” 

Florence is the Reimer child with a strong sense of responsibility. She and her irresponsible brother grew apart over the years, but through necessity they form a fragile relationship. The family pulls together to try to figure out how to deal with Saul. They disagree on the best approach to make those difficult decisions like how to take away the car keys. Each one, in his or her own way, has to find a way to adjust to the changes in Saul during his downward spiral into the Alzheimer’s abyss.

I have to laugh about Monique’s account of Saul ordering magazine subscriptions, aluminum siding, and hired carpet cleaners when they had oak floors. It brings back memories of Jim, the telemarketer’s best friend.

It is easy for me to relate to Monique—her frustration as she struggles to care for Saul at home, and her guilt when she realizes it is “time” to find a better solution. I understand her need to be present daily at the facility, feeding Saul and watching after him. I understand her frustration with Joey when he doesn’t seem to do his fair share. My heart aches for Monique when Saul arises from his apathetic state for a brief moment of clarity and calls her chou-fleur. This powerful moment demonstrates that Alzheimer’s erases a lifetime of memories, but doesn’t empty the soul of love.

The mark of a good novel is one that makes you laugh and cry, and An Absent Mind hits the target dead center. It is obvious Eric Rill knows the devastation of a loved one with Alzheimer’s, and yet tells this story in an uplifting manner. An Absent Mind is riveting from beginning to end as we walk the journey with the Reimer family.

copyright © March 2014 by L.S. Fisher

http://earlyonset.blogspot.com

Eric Rill’s An Absent Mind is available on Amazon.com 

Seth Rogan Livens Up Senate Hearing on Alzheimer’s

Well, the purpose of having a celebrity spokesperson is to get attention. Having Seth Rogen testify at the February 26 Senate Appropriations Subcommittee on Labor, Health & Human Services met that goal. In his opening remarks, Rogen admitted that being called an expert in something was “cool.” He said,  “I don’t know if you know who I am at all. You told me you never saw Knocked Up, Chairman, so…it’s a little insulting.” Senator Tom Harkin showed uncharacteristic humor when he wagered that this was the first time in a congressional hearing that the words ‘knocked up’ had been heard.

I’ve been to several Senate Hearings on Alzheimer’s while at the Advocacy Forum in Washington, D.C. I don’t recall any where the audience was laughing. These are usually deadly serious meetings about a deadly disease. I can remember one hearing where tissue boxes were being passed up and down the rows when a young lady testified about familial early-onset Alzheimer’s. I believe it had to be one of the most tragic stories I had ever heard. Her entire family had a 50/50 chance of facing the same unrelenting fatal disease.

I watched the Webcast of the hearing and although Rogen received the bulk of the media attention, he was not the only person to testify. Scientists and economists provided extensive testimony on  Alzheimer’s and answered the senators’ questions.   

Dr. Richard Hodes (NIH) talked about research on how a healthy lifestyle could be an intervention for Alzheimer’s. Although still early in the research process, he recommended diet and exercise as a way to improve overall health.

One of the people to testify was former Congressman Dennis Moore. I’ve met Dennis on previous D.C. trips when he joined Missouri advocates to talk to our Senators. Dennis is a warm, personable man who has a heartfelt way of connecting with legislators when he speaks about Alzheimer’s. Seeing one of their own with early onset Alzheimer’s is an eye-opener for many of them.

Another person who testified, Dr. Michael Hurd, researcher for the Rand Corporation, talked about the monetary cost of dementia. The annual cost of dementia in 2010 was $109 billion. When you factor in informal care, the amount increases to $160-$250 billion. Alzheimer’s is the most costly disease.  

National Institute of Health Director Dr. Francis Collins who explained the limitation on Alzheimer’s research was simply funding. Only one in six peer-reviewed research projects are funded. The brightest minds often research other diseases that are well funded.

Simply put, our country has not provided the resources to find a cure for Alzheimer’s. Maybe it’s because dementia is a disease that still has a stigma—or as Rogen said, “Americans whisper the word Alzheimer’s, because their government whispers the word Alzheimer’s.”

Laced in with his humorous remarks, which is indeed an attention getter, Rogen shared the story of his mother-in-law who developed early onset Alzheimer’s at fifty-five. By sixty, she was unable to speak, feed or dress herself. While that image sank in, Rogen admitted that the dire situation caused him, “a lazy, self-involved, generally self-medicated man-child to start an entire charity organization.” His Hilarity for Charity raises money for Alzheimer’s research and for families dealing with dementia.

Senator Moran began the hearing with Alzheimer’s information, but I want to leave you with some of his thoughts. Every 68 seconds another American develops Alzheimer’s. In the United States more than 5.2 million, and 44 million worldwide have the disease. Alzheimer’s is the sixth leading cause of death in the United States. It has no cure, no diagnostic test, and no treatment. A Rand Corporation study predicts that within 30 years the cost of dementia is expected to bypass cancer and heart disease. Even a five-year delay in the onset, would mean a total savings of $447 billion by 2050. The effort to find effective treatments and a cure causes the most fiscally conservative and those who are the most caring and compassionate to come together. Moran said that we need to fully commit to finding a cure in the next decade.  He called finding a cure “The defining challenge of our generation.”  Moran said, “The gift that we all could provide for every American, for every American family, is a special gift…it is the gift of hope.”  

To watch the hearing:

http://www.appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=ac30b75a-65a5-4958-8260-e64f070beaf7

copyright © March 2014 by L.S. Fisher

http://earlyonset.blogspot.com

Music to My Ears

Music has the ability to bring joy into our hearts and give us happy feet when the beat calls for dancing. Music has always been a part of my life although I can’t play an instrument and have a hard time carrying a tune. My mom, brother Jimmy, and other family members take their music to several area nursing homes on a regular basis.

Monthly concerts in nursing homes is a natural way for my mom to share her love of music. Her entire family was musical and entertained at every family gathering with down home country and gospel music. That was a different time and different era in my life. On Saturdays, we visited Grandma and Grandpa Whittle and played with cousins while the grownups filled the night air with the sounds of music. Get-togethers were the norm instead of the exception they are now.

Even after I married, the musical way of life continued. Jim’s family was chocked full of musicians and at every opportunity, guitars, fiddles, banjos, were taken out of cases and kitchen chairs clustered together while everyone sang and played their favorite tunes.

One day last week, on an otherwise normal day, I felt a real longing to visit with my mom. First, I called to make sure she was home, and then made the hour drive to visit. My brother Jimmy was there, and just like old times, he and Mom played some of their old favorites and a few new ones. The music took me back—sometimes to childhood. When mom sang “The Way I Am” it reminded me of Jim before dementia.

Music was therapy for Jim and he played his guitar every morning. He loved gospel, country, and cowboy songs. Even after he lost the ability to play, he still enjoyed listening. For a long time, he carried a Walkman to listen to his favorite tunes. At the nursing home, we turned his TV to the Country Music Channel and kept a drawer full of his favorite music cassettes.

Music provides a nonmedical method to decrease agitation and behavioral problems in people with dementia. Music is effective in all stages of the disease and can stimulate happy memories even in the late stages. It is important to fit the music to the person. While one person might appreciate big band, others might prefer jazz, country, gospel, or old time rock and roll.

Music elevates mood and stimulates memory for everyone. Just last week, I saw a question on Facebook asking if anyone remembered Gordon Lightfoot and could name one of his songs. I paused the show I was watching, The Blacklist, and felt compelled to answer the question. The posts were full of “The Wreck of the Edmund Fitzgerald,” but the Gordon Lightfoot song that always meant the most to me was “Sundown.” It had been years since I heard the song, but I instantly thought of Jim and when my kids were young. Jim used to sing that song and it always makes me think of the seventies—Jim with his sideburns and me with long straight hair parted in the middle. The song ignites memories of youth, love, hard but happy times. I typed in “Sundown” and restarted my movie. About two minutes later, Gordon Lightfoot’s smooth voice began singing “Sundown.” Memories upon memories. I thought it just a little beyond strange that the song followed so quickly on the heels of the Facebook question.

I believe that when music plays a big part of life, it can be a way to connect with people who no longer share our physical world. Was it just a coincidence that I saw a question that led to a specific song more than three decades old and then heard it on a TV show within minutes of each other? Maybe. Maybe not. It could have been a gentle auditory reminder that our life force doesn’t end with death.

In my quiet house the only sound I hear right now with my physical ears is the gurgling of the refrigerator and the buzzing of an impatient dryer. But in my mind, I still hear soul soothing echoes of laughter and music from long ago.

copyright © Feb. 2014 by L. S. Fisher

http://earlyonset.blogspot.com

On the Scent: The Memory Connection

Our sense of smell is a door that opens our memories. Sometimes the actual scent can be elusive, while the memory is strong. Yesterday, I walked into a room and for some reason it reminded me of a funeral home. That isn’t exactly a good memory, and I’m not even sure what it was that made me think of it. Sometimes, a certain combination of floral arrangements will ignite that memory for me, but this room had no flowers in it.

On a better note, one of my favorite scents is coffee. That signifies the beginnings of most of the days of my life. It’s like waking up to a new page in a favorite book. Coffee and Jim are intertwined in my memory. He loved his coffee, drank it half a cup at a time so that it stayed hot. To this day, if my coffee isn’t hot, I can’t drink it.

After shaves and perfumes can be associated with certain people. I saw a movie one time, I think it was The Notebook, where a man tried to find the scent that his wife wore and couldn’t find it. Eventually, he realized the smell was shampoo instead of perfume. Smell is our strongest connection to those special people in our memories whether it is cologne or just the smell of their skin.

I hate the smell of Vick’s Vapor-rub. It makes me think of being miserable with a cold when I was a kid. That’s why I only use Mentholatum for stuffy head colds. For the same reason, I can’t stand the smell of wintergreen—Pepto-Bismol. It does come in a cherry flavor now, but I’m sure the smell of that would make me think of cough syrup. How about the distinctive smell of the doctor’s office? Don’t notice that so much anymore, but Dr. Hoffa’s office had a scent like no other place and a whiff of that antiseptic/medicine smell will take me back in a heartbeat.

Our brains link countless smells to events. Does the smell of popcorn make you think of going to the movies? Does a dank odor make you think of the showers after gym class in school?

Because of the known connection between scent and memory, researchers have developed an oPhone. Its cylinder shape is nothing like a regular phone and you can’t use it to have a conversation with another person. Instead of sounds, the emails, tweets, and texts are odors. It has an oChip that produces over 300 scents now, but eventually it will produce many more. The scents are complex—not just a single odor, but more like real life where a combination of odors makes a memory.

The oPhone is currently being used to provide a “sensory experience” in a coffee shop in Paris—sort of smell before you buy. The hopes are that the oPhone has more value than a gimmicky marketing tool. In fact, with the close association between smell and memory, it is believed that the oPhone could stimulate memory in people with Alzheimer’s.

Since it may be a long time before this product is available, you could try your own sniff tests to see if it will jog your loved one’s memory. No one knows the scents that bring back favorite memories more than you.

The smell of a fresh baked cinnamon roll makes me think of my wonderful mother-in-law. She’s long gone, but the smell of her homemade baked goods live in my brain associated with the smell of cinnamon. Of course, that would call for a good cup of coffee from the pot that seemed to have no bottom. Her house was always filled with baked goods and love. I can hear the laughter, the sounds of a pitch game, and Jim strumming his guitar in the background. I can plainly smell the memory.

copyright © February 2014 by L. S. Fisher

http://earlyonset.blogspot.com

 Source: http://www.medicalnewstoday.com/articles/272565.php

Success and Failure Olympian Style

My idea of a quad is to become completely engrossed in the Olympics every four years. Now that I have a DVR, I can pretty much watch every minute of televised action. I find myself sitting in front of the TV at midnight watching the luge. Hello, don’t they all pretty much look alike rocketing down an ice slide at 80 miles per hour?

What about that skateboarding? Those folks are crazy. They risk  life and limb for a shot at the gold. And one little mess-up—a bad landing after spinning, flipping, performing death-defying antics in the air—and  all is for nothing. What about that girl that broke her helmet? She looked like she was out cold, but about the time help arrived, she was back on her feet snowboarding to the finish line.  Of course, she had failed to get a medal or a decent score, but what a picture of success to see someone overcome that type of fall. What about the athletes who are broken and pinned back together, performing with broken ribs, recovering from surgery, or performing with a shot of Novocain to dull the pain?

Watching the Olympics really has made me think about the perception of success and failure. One person’s bronze medal means failure while signifying another person’s success. Of course, I always want to see the United States snag the gold, but, hey, when you compete against the best athletes in the world, you can’t always expect to be top dog.

Contests are won and lost by one-hundredths of a second. It seems strange for commentators to talk about how a lap in speed skating is slow if it is over 30 seconds. Olga Graf, from Russia, was spurred on by the home-country crowd and was pleased as punch to win a bronze medal.

On the other hand, a bronze medal had the USA’s mogul star Hannah Kearney in tears. She expected gold, not bronze. She was so emotional she couldn’t finish the interview, but turned her head as the tears flowed. Everyone wants gold, even silver just doesn’t seem good enough. You almost have to admire someone who so firmly believes he or she is so good that it is unfair that another person in the world is a few nanoseconds faster or can jump a tad higher, or was just plain having a good day to offset your bad one.

Bode Miller missed the podium in the men’s downhill, but in a way considered his run a success. He met his main objective: “Not kill myself was the primary (objective).”

My favorite event is figure skating, and we had a treat this year with the new team event. The good news was that we had some excellent skaters that dug us out of the hole made by the first two skaters. Davis  and White along with Ashley Wagner  put the USA in the top five teams to vie for medals. The bad news was that with the scoring system, we could never get higher than bronze. The Ashley Wagner frown that has gone viral on the Internet is not because of the bronze, but because of a much lower score than she expected.

For some who have no hopes of winning, the Olympic experience is reward enough. Take the Cool Running Jamaican bobsled team. A simple thing like losing their luggage, and equipment, on the trip over didn’t deter them from having a good time. They just smile and everyone loves them. They are successes without a medal of any color.

It’s no wonder with the pressure to perform nerves can overcome athletes chosen to represent their country in the Olympics. We all know that confidence trumps nerves every time. It isn’t always the best of the best that turn in the outstanding performance. It may be the person with no expectations, no pressure.

We can learn a lesson from the Olympians: If you “fail” to be the best, it is still a giant leap above those who let fear of failure take them out of the competition.

  

copyright © Feb 2014 by L.S. Fisher

http://earlyonset.blogspot.com

Today and Yesterday

Grandpa Everett Whittle and mules Jack and Pete

Today has become a lazy Sunday morning. Between the ice and small layer of snow, the world seems to be at a complete standstill. At least I am personally at a standstill since there’s no way I’m venturing out.

This hasn’t been the weekend I planned, for sure. I thought Saturday would be spent watching my oldest granddaughter play in a basketball tournament, but when the roads became hazardous with ice, they cancelled the tourney. Today should have been Writers’ Guild, but that, too, was cancelled.

After watching Joel Osteen, I picked up an old magazine—part of my retirement plan is to read and recycle all the magazines that have been “saved” for reading—and saw an article “Where Have the Quail Gone?” That question has plagued me for years along with where have all the whippoorwills gone? Or for that matter, what the heck has happened to the cottontails?

When I was growing up, the night was full of the quail’s “bob-bob white” call harmonized by “whippoorwill.” I’m not sure when the sounds disappeared from the night, I just know it has been a long time, and I miss the music of their calls drawing me back to simpler yesterdays.

Rabbits were never that plentiful in the Ozarks where I grew up, but when I moved north of Sedalia, rabbits were everywhere. It was not unusual to see dozens of them on a single trip to town. Now? I’ve seen one rabbit this winter.

I miss the night sounds of my youth and the cottontail’s footprints in the snow. It may just seem like small losses, but several small losses add up to big ones.

We know the major losses in life are the people and places we loved. Last week, I pulled up Facebook to see pictures of my Grandpa Capps and my Grandpa Whittle on the same day. Funny, how many of the photos I remember seeing, while others I had never seen before. My brother posted a picture of my Grandpa Whittle with his mules. What were the mules’ names? For some reason, this question plagued me along with where have all the bobwhites, whippoorwills, and rabbits gone.

I asked the question, and when I had no response, I dredged up the names “Jack and Jenny.” No one on Facebook knew the answer so I called my mom. She consulted with my Aunt Lebetta and they came up with Jack and Pete. That sounded right to me.

Old photos are keys that unlock forgotten memories. They are strong reminders of people long lost. Seeing a photo of my grandma makes me remember how her hair felt when she let me braid it for her. After I braided it, surely not as neatly as she could have, she would pin her hair in coils on her head and push in tortoise shell combs.

I was close to the three grandparents who lived close to me. I regret that I never knew my Grandma Capps who lived in Kansas. I’ve read her stories in the family genealogy book and admire her for her struggles and hardships in life. She told the stories of her youth and not so much about when she raised a large family as a divorced mom during a time when that wasn’t as usual, or acceptable, as it is today.

Loss is around us. When the house is silent as it is now, and the yard barren and empty, no cars passing by on the road, loss is evident. It seemed that no matter how bad the roads, Jim would have been out on them. Before we lived next door to his mom’s house, we would have ventured out. She would have a pot of coffee on, homemade biscuits in the oven, and a big skillet of gravy cooking.

My Bisquick biscuits and gravy tasted good this morning, although they fell short of the real-deal that lives in my memories of the yesterdays of my life. But the thing is, the way to deal with loss is to make new and better memories by living each day to the fullest. I may be stuck at home, but that’s not a bad thing.

Family is a phone call, an Internet click away. I have work to do, and I’m happy and healthy. Yesterday lives in my memory, today is what I make of it, and tomorrow is full of adventure.

Copyright © February 2014 by L. S. Fisher

www.earlyonset.blogspot.com

Happy Memories

Last weekend, I fixed a cup of tea while my youngest granddaughter told me about her week. “What have you been doing lately, Grandma Linda?” she asked.

“Well,” I said as I repeatedly dunked my tea bag with a spoon, “lately I seem to just spend a lot of time here at home. Some days, I don’t even go outside.”

She looked into the candy dish, turned, and smiled at me. “You know, Grandma Linda, this house holds a lot of happy memories for you.”

I looked up from my steaming cup of tea and said, “You are so right. It is full of happy memories.”

This is the house that Jim and I built—and I mean that literally. I’m talking countless hours of lifting two by fours, hammering nails, laughing and arguing about where the walls should be, how many outlets each room needed, where to put phone jacks, how to cover up a boo-boo. Talk about a house built with love. We didn’t have much money or a big bank account, just a dream that we could build our own home if we made enough sacrifices. We borrowed as little as possible and managed to have the house completely paid off shortly after we finished building it.

Of course, it took several years to build the house, but as soon as we moved in, happy memories were in the making. Our sons were nearly grown by that time so it wasn’t long before they married and started their own families giving Grandpa Jim and I more family to love.

Now, Jim is gone and lives only in our memories. I recently retired, and I’m taking well to my new lifestyle. Although I may not make it out the door every day, I always find much to do and my life is still full and busy.

After jumping out of bed bright and early yesterday for some Alzheimer’s volunteer work in town,  I was back to my new routine this morning. I woke up at 8:00 and finished the novel I was reading. I couldn’t seem to stop reading the intriguing story of family secrets, loss, and learning to live again. I guess I could relate to the importance of breaking away from sad thoughts and finding a pathway beyond past heartaches or failures to a new future. Different, yes, but still something to fill my heart with joy.

I took time to read the paper this morning—not the usual headline skimming method I usually use.  Normally, I do not read obituaries if I don’t recognize the names. I just move on to something else. This morning, I took time to read the two obituaries printed in our small town paper. These were people who lived and left their imprint on the hearts of their families, and I just felt a compulsion to read their stories.

Finis “Ed” Sumpter, 76, was a decorated Air Force veteran. He served two tours of duty in Vietnam and was awarded the bronze star. He retired after twenty years with the rank of Chief Master Sergeant. Then, I read 91 year old Mary Cauvel’s story. She had been an aircraft electronics assembler for North American Aeronautics and worked on the Apollo Program in the mid-sixties. Here were two people whose stories I would have missed completely if I hadn’t taken a moment to read the brief summary of their lives. Can you imagine the hardships they overcame in their lifetimes so they could build happy memories of people, places, and events?

Life should be full of happy memories, and the trick is to focus on those life moments. Long after houses and people are gone, traces of happy memories live on and on in our hearts.

copyright January 2014 by L. S. Fisher

www.earlyonset.blogspot.com

Alzheimer’s Advocates Succeed in Increasing Research Funding

Sometimes being an Alzheimer’s advocate can be frustrating. It seems that our voices of reason often fall on deaf ears. I’ve gone to Washington, D. C., thirteen consecutive times to ask for an increase in funding for Alzheimer’s research.

Successes are the super exciting part of being an advocate. Last week we experienced an unprecedented victory in the battle against Alzheimer’s. The Alzheimer’s Association and more than 600,000 advocates fist pumped when $122 million increase in Alzheimer’s research funding sailed through Congress and was signed by the President.

Alzheimer’s Association CEO, Harry Johns, said these additional resources could “convert scientific opportunity into life-changing outcomes.” Here’s a breakdown of the funding: $100 million for the National Institute on Aging for research, $3.3 million to support caregivers, $4 million to train health professionals on Alzheimer’s issues, $10.5 million to expand home and community based services, and $4.2 million for outreach activities to increase awareness. Another $30 million will be used for brain research that can impact Alzheimer’s and other brain diseases.

Increased funding for Alzheimer’s creates hope for more than five million Americans living with Alzheimer’s disease. An Alzheimer’s cure is possibly the largest single factor toward saving the future of Medicare and Medicaid. Compare these numbers:  Spending on Alzheimer’s research in 2013—$484 Million NIH+$80 million directors’ budget, compared to Medicare spending of $107 billion and Medicaid of $35 billion spent on those with Alzheimer’s disease. Is this a wise use of our money?

I’ve lost a loved one to an Alzheimer’s type of dementia and know it is virtually impossible to describe that decade of loss with mere words. I often try, but saying how it was for us, and how it is for millions now, falls far short of the experience.

The sad thing is that it usually takes a personal experience before a person reaches that level of comprehension. That means another person, another family, another circle of friends offer support and love to ease the inevitable outcome of an incurable, virtually untreatable, disease. A disease that unravels years of accomplishments, skills, hopes and dreams.

An advocate’s job is to keep chipping away at the hope for a cure—to remain unwavering through the ups and downs of being a voice for millions who would have their voices silenced. To continue the battle of education about a disease that is not a joke about cute little old men and women whose forgetfulness makes us laugh. It’s about slamming home the reality that this disease causes pain and heartache for entire families. Families who are often caught off guard by the ugly fact that Alzheimer’s can happen in the best person—in the most brilliant person.

Before this recent increase, the National Institutes of Health estimated that $484 million would be available for Alzheimer’s research funding in 2014. The amount spent on Alzheimer’s research is small compared to billions spent on other diseases. We do not want funding decreased to other major killer diseases, but we want the same success for Alzheimer’s disease. We want to have survivors at our Walks!

copyright © January 2014 by L.S. Fisher

www.earlyonset.blogspot.com 

Like a Steel Trap

How many people do you know that have a mind like a steel trap? These people can seem to remember everything, and then some. Don’t you just sometimes wonder how much of that stuff they make up?

I read an article this morning in American Profile called “Flex Your Memory Muscle.”  With my interest in Alzheimer’s, any article memory related catches my attention. This article was particularly interesting since I had never heard of the USA Memory Championships—or if I’d ever heard of the contest, I forgot all about it.

These “mental athletes” are known as mnemonists. These people learn a vast amount of information—it would almost seem the more useless, the better. Yep. One guy, Johnny Briones, spends two hours a day memorizing the order of a randomly shuffled deck of cards. That might be a useful skill for Vegas, but don’t know how much it would matter in the real world. I digress. The point is to hone your memory skills through these mental exercises. Use it or lose it.

When a person has Alzheimer’s, their hippocampus, where short term memory resides, shrinks. Dr. Majid Fotuhi, author of Boost Your Brain: The New Art and Science Behind Enhanced Brain Performance, likens memorization to “pushups for your hippocampus.”

I don’t know about you, but I think my hippocampus could use some exercise. I do have a vast amount of trivia stored in my brain, no doubt cluttering up my cortex. My poor cortex has all this information safely stored away, but with all those little chunks of info, retrieving it, especially when I need it, is not likely to be that darned easy. So often, I’ll know that I know something, but can’t bring it to the forefront of my mind at the right time. No, I’ll wake up out of a sound sleep with the illusive piece of information I couldn’t retrieve when I needed it.

Several months ago, my youngest son observed that, “Mom, your memory isn’t as good as it used to be.”

I agreed, but had to add, “As long as I remember well enough to do my job, I’m fine. When I retire, I won’t have to remember anything anymore.”

So, soon after I quit going to work on a regular basis, I promptly forgot a hair appointment. Okay, so this had happened before—once in the last thirty years. How did I forget it when it was on my Google calendar, that set off an alarm on my cell phone? Well, I was working on an anthology that used a different Gmail account. Therefore, my Google Calendar wasn’t up like it usually is. My cell phone buzzes constantly, so I just ignored it. I was blissfully ignorant until about two hours too late when suddenly, “ding, ding, ding,” that little piece of info made its way to the forefront of my brain.  

People with Alzheimer’s lose their short-term memory and the long-term memory becomes more vivid and seems to be recent, rather than distant events. It only adds to the confusion when they can no longer remember or recognize a spouse or children.

There are a few things about memory that are different from person to person that has nothing to do with ability to retain knowledge. It has to do with selected memory. Some people select to remember the good times, the happy times, and not just the bad things. I tend to be that way.

I’m only going to pass through this world once, and I want my memories to be of the good times. Memorization comes through repetition, focus, and retrieval from the folds of your brain. If you don’t make a habit of focusing on the bad, those memories will become more faded. They may not go away, but they also won’t determine the course of your life.

Each one of us has bad memories, possibly even horrid memories. We control the focus and quality of our memories. It is my brain, my hippocampus, my cortex.

Do I want to use my “memory muscle” to make my life better, or miserable? I choose better! I will never be a mnemonist, but I hope to keep my good memories, happy memories for a long, long time. I’d take that over memorizing a deck of cards any day.

copyright © by L. S. Fisher, January 2014

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