There's an App for That

It seems that no matter what you want to do, someone will remind you, “There’s an app for that,” and sure enough there is. Often it is things you don’t even think about. “How did you tie that scarf?” There’s an app for that. Apple owns the trademark for the slogan, but it now pops up in everyday language.

It has become a running joke that apps can make the difficult easy. They provide quick, simple solutions. We now have an “app generation” that knows they can click on an icon and have the knowhow that used to be passed from generation to generation. They take for granted having the world at their fingertips, a world that we couldn’t even imagine when we were kids.

As personal electronic devices become easier and more user friendly, we boomers have come to embrace the wonderful world of technology. What we have learned is something that younger generations have always had. We went through years of schooling without spell check, grammar check, the ability to just back up to erase the typed word, no Google search for research papers, rotary telephones plugged into a wall that served one purpose—conversation, and no concept of what an “app” was, or that it would ever exist.

Even those of us boomers with wild imaginations didn’t foresee the day when school kids would be walking around with text books on a slim device. And the thought of being in constant communication with our parents would have probably seemed more like a nightmare than a desired condition. Our parents were parents—not our best friends.

Now that we boomers are reaching the age when we are most vulnerable to Alzheimer’s, the brave new world has come up with a possible solution—maybe, just maybe, there is, or will be, an app for people with dementia.

I read an article this morning about Apple and Google technology helping fight Alzheimer’s disease. The article spoke of tests and treatments disguised as games. Wrist watches and eye glasses that could be used for GPS tracking, facial recognition, and help with daily living.

Maybe more research should go into developing smart phones, or other electronic devices, specifically for people with dementia, especially those who are in early stages. Devices would need to be easy to keep track of, super easy to use with voice activated apps, and pictures.

Think about the problems that people in the early stages of dementia have—they forget appointments, forget to take medication, get lost, have trouble communicating, and trouble problem solving. Well, I know for a fact that I’ve used my smart phone to solve the first three problems on that list. I’m not too likely to forget appointments when my smart phone reminds me. I had trouble remembering to take my morning medication until I put a reminder on my phone. Getting lost is not an option with GPS on my phone. Wouldn’t it be easier for the memory impaired to communicate if they could see the person they were talking to instead of just hearing them? After all, words are only seven percent of our communication with each other. Facial expressions are included in body language and account for 55 percent. We’ve already discussed that there’s an app for solving a myriad of problems.

Why not have Medicare dollars pay for technology to enhance independent ability rather than drugs that cause side effects and often diminish alertness? Not only can technology help now, it will be even more beneficial for future generations who have technology entrenched in their long-term memories.

copyright© May 2014 by L.S. Fisher

http://earlyonset.blogspot.com

Article: Sun, Leo. http://www.fool.com/investing/general/2014/05/18/how-apple-and-google-are-helping-fight-alzheimers.aspx  

In the Still of the Night

I used to think that older/retired people didn’t need much sleep. Seemed like after years of forcing themselves out of bed during their working years, they found themselves jumping out of bed at sunrise just because that’s when they felt like getting up. When you think about it, that works well for someone who goes to bed early. If you have your eight hours of shut-eye in by daylight, you are going to want to jump up and start the day early.

Then there’s those like me who stay up until midnight. A full night’s sleep will still get me out of bed by eight and that’s plenty early. What I don’t like is when I wake up in the middle of the night and can’t go back to sleep. Last night, I woke up at about three thirty. I tossed, turned, and tried to go back to sleep. No luck. Then, when I thought it might happen, my weather alert radio went off. I dragged my sleepy self to the kitchen to turn it off. I pushed the button that tells what the alert is, and it started giving a regular forecast. I didn’t hear anything resembling weather that warranted the alarm.

Back in bed, I couldn’t help but think there should have been a reason for the bells and whistles disturbing my peace. Well, with my smart phone, I normally receive weather alerts on Facebook and via email, not to mention radar, and Google news. I debated. Browsing the Internet tends to keep me awake, but better safe than sorry, right? Okay, curiosity won.

First email. No alert. Then, Facebook. Oh geeze, couldn’t help but look at all the old photos posted for Mother’s Day. They just went on, and on. Time passed. It was soon four thirty, and I was wide awake. Still, determined to sleep awhile longer, I put down the phone and resumed tossing and turning, mind churning.

In the still of the night, I started thinking about how seemingly insignificant decisions or events changed the entire course of my life. I thought about the chain of events that led up to meeting Jim… On a summer Saturday, my mom and I were in the Dew Drop Inn eating hamburgers and fries when Kenny Fisher walked in. My mom knew him and introduced me. A week later, Kenny, “Uncle Orvie,” introduced me to his nephew. In many ways, it was a random meeting on an otherwise uneventful day in a series of uneventful days. Yet, that chance meeting changed the course of my life.

Sometimes the randomness of life scares me. The thought that if I do this, or don’t do that, it can change my destiny for better or worse. My life sometimes seems out of control, careening through time and space, heading toward that final frontier.

I’ve always had this insatiable curiosity as to what makes me, me. Why are my thoughts, fears, joys and sorrows, and life’s experiences inside this particular body, living this unique life, in this specific place?

In opposition to the scary thought of where the path of life is taking me is the comfort of what I consider to be my master plan. This isn’t just based on my decisions, but on my destiny. This isn’t to say that I don’t think my decisions are important anymore, in fact, I think they are crucial. But somehow, it seems that when I reach a crossroad, I choose the path that is right for me.

All my heavy thinking didn’t help me go back to sleep. So, just like other “older” people I used to shake my head at, I was up before dawn. A few cups of coffee, and I was good to go.

I wonder if today will bring one of those life changing decisions, or will it be merely another forgettable day? I may not know that answer for years—or I may know it by sundown.

Whatever the day brings, I’m confident it will fit into my master plan.

copyright © May 2014 by L. S. Fisher

www.earlyonset.blogspot.com

Dare to Inspire and to Be Inspired

April was a busy month and the first week of May was more of the same. On May Day, I went to the Lodge of the Four Seasons to spend time with some of the most inspiring women I have ever had the pleasure to add to my circle of friends. Business Women of Missouri are focused on improving life for all women, but especially those who are struggling. I am proud to be part of a group that focuses on legislation to help women, scholarships, collecting personal care products for women’s shelters…everywhere you looked, women shared ideas, hugs, and helping hands.

My friend, Nancy, has served as the state president for the past year. As part of Nancy’s team, I learned just how complex planning a conference can be. Fortunately, we had capable leaders who were able to crunch the numbers to find that, indeed, we could meet our obligation. They dared to break the mold and try some new ideas. Because of this, our Saturday morning program included two dynamic, and inspiring, speakers.

Nancy finished her term as president and turn the reins over to Sherry whose theme is “Dare to Inspire and to Be Inspired.” Inspiration—the word comes from the same Latin root word as respiration, spirare, which means “to breathe.”  Inspiration makes me feel alive.

Today has been both a sad day and an inspiring day. This morning, the sun was shining and a breeze provided a perfect day for being outdoors. The day started with setting tomato and pepper plants into the earth, with the promise of fresh produce later in the summer.

It was still early when I headed toward Versailles to a memorial for a lovely lady who left this earth too soon. Loretta had asked two family members to speak at her services. Both spoke of how inspiring and life-changing their relationship with Loretta had been. There’s no better legacy to leave than to be a positive influence on others.

Afterwards, my mom, sister, brother, and sister-in-law went out to lunch. As is typical in a small town, the place was filled with people we knew. When my aunt and uncle came in, we squeezed together to make room at the table for them. The conversation was lively, filled with humor. I was sitting at a table with people who inspire me. Then, more cousins/aunts (our family is complicated because my dad’s cousins married my mom’s brothers). It was heartening to spend some time with people I’ve known my entire life. Inspiring.

My day ended with board members of our local Business Women’s Club. Once again, I sat at a table with caring women whom I admire and am inspired by. These women give generously of their time and talents.

As we said our goodbyes, shared hugs and encouragement, I walked out of the restaurant thinking I would jump in my car and head home. It had been a long day. Instead, I decided to walk across the street and look at the veteran’s bricks I had purchased in honor of Jim and my dad.

The evening breeze whipped the eternal flame. Suddenly, I realized how beautiful the evening, and how inspiring the tributes to those who dared to lay their lives on the line for our country. The names on memorials and the rows of bricks were evidence of sacrifice and commitment. I wandered down the sidewalk reading the names. I saw one inscribed with a date when a life was lost in the Philippines. Sad, but inspiring.

I walked around snapping pictures of this familiar landmark, that had suddenly taken on a special atmosphere. I was the only person on the courthouse lawn. Had that ever happened before? What a perfect evening. What a great day to be alive, and appreciate those who died so that I could walk around the courthouse on a peaceful May evening. The breeze, the very breath of inspiration,  ruffled my hair, caressed my skin, and filled my heart with hope and happiness, as I dared to be inspired.

copyright © May 2014 by L. S. Fisher

http://earlyonset.blogspot.com

The Easter Butterfly

This Easter seemed to be a bit of a letdown as I drove to church. Of course, maybe that was to be expected since Good Friday marked the ninth anniversary of Jim’s death.

I was bummed because I was going to Easter at the Matthewson alone. I love the years when my kids and grandkids go with me, but this year everyone had other plans. My sister-in-law had planned to go with me, but she called Sunday morning to let me know that she couldn’t go either.

Once I realized I’d be going by myself, I thought about not going. But since I had already taken my shower and had my clothes laid out, I decided to go solo.

Driving time is thinking time for me. So driving to the Fairgrounds, I found my mind wandering to the ghosts of Easter’s past. I thought about Dorothy’s famous Easter cake that she always sent to the employees at the Coop. It was a fluffy white cake topped with coconut “grass” beautifully decorated. I thought about my mother-in-law, Virginia, fixing a huge Easter feast and inviting everyone in the family. Easter was a big deal with Easter dresses, Dinah wearing her Easter hat, laughter, music, and dozens of little ones filling baskets with eggs.

I thought about Jim and when our kids were little, ready for church in western shirts I had made for them, complete with pearl snaps. It seems like a different world, a different me. I can’t believe I had the patience, or time, to sew those little shirts. I thought of school plays, baskets, family, spring flowers, butterflies, the days when April was a time of rebirth and not a time of sorrow and death. All these thoughts left me teary eyed as I suddenly found myself longing for the happy Easters of the past.

I pulled myself together, and parked my car as directed by the people assigned to the parking lot. Our church puts a lot of effort into Easter at the Matthewson. Normally, our church has different services at two different locations, but on Easter everyone comes together and invites the community to join us. It is always an uplifting, spirited service.

A giant cross was rolled inside and kids with butterfly wings swirled and swooped on the stage and down the aisle. Pastor Jim asked us to turn on our cell phones and hold them up in remembrance of loved ones. He said to send the message that “God is alive.” We sang songs, celebrated the rebirth of our Savior.

During the message, Pastor Jim said a few words that really touched me. Not relying on my memory, I typed his thoughts on butterflies into Quick Office on my phone. You can’t put wings on your back and pretend to be a butterfly, and you can’t have wings and continue to crawl.

When you think about it, butterflies begin life as a lowly caterpillar, crawling around searching for food. Their lives are totally boring, mundane, as they eke out their very livelihood by eating the leaves beneath their feet. They mature through stages called instars all the while filling themselves with toxic substances that stick with them and protect them from predators once they become adults. Through metamorphosis, the homely caterpillar emerges as a stunning butterfly and begins life anew. Butterflies don’t crawl anymore, they flit around showing off their colorful regalia while they feed on sweet flower nectar.

Butterflies symbolize rebirth. In ancient Greek, the word for “butterfly” means “soul” or “mind.” In other cultures, butterflies symbolize love, long life, transformation, animal spirits, celebration, good luck, spiritual evolution, or a sign of God’s favor.

To me, the butterfly symbolizes hope. I believe that no matter how low I might be at times, or when I think about what might have been, the butterfly promises that the days ahead will unfurl moments of breathtaking beauty. No pretending necessary—just spread those butterfly wings and fly.

copyright© April 2014 by L. S. Fisher

http://earlyonset.blogspot.com   

          

Voices for Alzheimer’s—Nine Hundred Purple Sashes

I just returned from my fourteenth annual journey to Washington, D.C., for the Alzheimer’s Advocacy Forum. My sister, Roberta, made the trip with me this year—for her third trip to our nation’s capitol to be a voice for Alzheimer’s.

We went to D.C. early in order to take a look around. As I browse the photos I snapped along the way, images emerge showcasing a city of stunning architecture, monuments, cherry blossoms, reflecting pools, fountains, gnarled trees, gawking tourists, honking taxis, a Sponge Bob Mailbox, a street musician playing a soulful saxophone…

My camera captured images of the past and future statues in front of the National Archives, and I read the words beneath: “Study the Past,” and “What Is Past Is Prologue.” As I pondered those two statements, I had turned and snapped a photo of the building across the street. Then, in the corner of the frame, I saw him. He was sleeping on a park bench, covered with a tattered green plastic tarp. This thin shelter was expected to ward off the chill of the night.

As we walked past him, we could hear his snores and see the blanket rise and fall. He was one of the unsheltered homeless. Out of D.C.’s 6800 homeless, more than 500 are unsheltered. They sleep in parks, in doorways, cubbyholes throughout the city. We saw a homeless man in Subway counting coins to buy a breakfast sandwich. Others beg for coins, or wander the streets pushing a cart overflowing with their treasures, hollow-eyed and defeated. I couldn’t help but wonder how many were confused and suffering from dementia.

It bothered me to know that statistically the odds were high that at least some of the homeless must have Alzheimer’s. After all, the focus of this journey  was  Alzheimer’s and a strategy to keep Alzheimer’s research funding in the budget.

Alzheimer’s is the most expensive disease in America and drains Medicare and Medicaid of $150 billion annually. Yet to fight this monster disease that gulps our economy, we wield a plastic sword.

Testifying on Alzheimer’s research before the U.S. Senate Appropriations Subcommittee, Francis Collins, Director of the National Institutes of Health, said, “We are not, at the moment, limited by ideas. We are not limited by scientific opportunities. We are not limited by talent. We are, unfortunately, limited by resources to be able to move this enterprise forward at the pace that it could take.”

 Our mission, as advocates, was to storm Capitol Hill to bring attention to the serious underfunding of Alzheimer’s research. Nearly 900 of us showed up in our purple sashes to tell our stories and to ask our legislators to increase Alzheimer’s research funding by $200 million. If we receive this increase, our funding will be $766 million—the most ever invested in Alzheimer’s research.

To put it in perspective—Alzheimer’s is the sixth leading cause of death with one-third of seniors dying with Alzheimer’s or another dementia. Approximately a half million people die each year because they have Alzheimer’s. This deadly disease cannot be prevented, cured, or even slowed. Yet, our nation is taking a pass on investing enough resources to take advantage of the talent, opportunities, and ideas generated by the brightest scientific minds in America. 

Help us make Alzheimer’s a disease of the past. Tell your legislators that we need to invest in America’s future by finding a cure for Alzheimer’s. It can be done; it will be done if we care enough.

We can’t win a war with a plastic sword. One of the health aides gave us a hint. She said that to get funds increased, we had to be visible and audible all year. Don’t let them forget about Alzheimer’s! Nine hundred purple sashes make a statement, but if you want to end Alzheimer’s and couldn’t go to the forum, please make a phone call, shoot off an email, or visit a district office. If we become a big enough pest, Congress will listen.

copyright © April 2014 by L. S. Fisher

http://earlyonset.blogspot.com

The Morning Sunlight Diet—Free and Easy

Maine Sunrise

Sleep was elusive as a severe thunderstorm chose midnight to crash, boom, and pelt the windows with hail. About the time exhaustion won the tug-of-war, a ka-boom rattled the windows and the sky lit with the violent flash of nearby lightning.

Not to be outdone, my new phone shrieked an alarm. I’m still learning about the bells and whistles, but a siren in the middle of a storm didn’t seem like a good thing. It was a flash flood warning. I think I’d just been warned by the deluge on the heels of the hail.

I finally fell into a uneasy sleep with equally disturbed dreams. I woke up to distant rumbling thunder, gray skies, and an alarm clock flashing 5:25 a.m. My phone said it was seven o’clock, so I took a look at Google news. National news covered the shooting at Fort Hood; state news concentrated on the weather.

Health News was the real eye-opener of the morning.  Okay, I already knew that sleep helped with weight loss. Of course, after the night I’d just experienced, that was down the tubes for today. This study by the Northwestern University Feinberg School of Medicine concentrated on sunlight without regard to sleep, caloric intake, or exercise. The sun affects our circadian rhythm and synchronizes our internal clock.

Maybe I’m a little on the ignorant side, but I had never heard of circadian rhythm. According to the article, “Circadian rhythm is the body’s physical, mental and behavioral changes that follow a roughly 24-hour cycle.” How could I have not known this term when apparently circadian rhythm is what makes us tick?  

The super good news brought to light by this study was that body mass index (BMI) can be greatly reduced with twenty to thirty minutes exposure to morning sunlight. In fact, exposure to light can account for 20 percent of BMI! Think of all the pills, strict diets, powdery drinks, nasty tasting chocolate bars, and invasive surgery that people undergo to lose weight and, more importantly, bring their BMI to a healthy level. Think of Americans saving $60 billion spent on weight loss programs each year!

Many of us suspected that our lifestyle contributed to an alarming increase in obesity. We spend the majority of our lives indoors, whether at home or work. Some of us (this is where I raise my hand) are night owls. We stay up late regardless of the time we have to get up in the mornings. I spent most of my working years with too little sleep and almost zero exposure to sunlight. That’s a health double whammy. And when you work, thanks partially to daylight savings time, your exposure is to afternoon light, which does not have the same benefit as morning sunlight.

Maybe I’m being a little optimistic, but since morning light affects mood and behavior, as well as BMI, couldn’t morning light therapy be helpful for people with Alzheimer’s? We know sun-downing is brought on by waning light and that a well-lit room can help behavior. Maybe an early morning walk, or even quiet time outdoors would provide an uplifting start to the day.  

Without sunlight between 8:00 a.m. and noon, our internal clock is altered and becomes as worthless as my flashing alarm clock was this morning. Our body’s timepiece becomes “uncoordinated” which leads to altered metabolism and weight gain.

 After reading the article, I was hyped about soaking up the rays to shrink my waistline while energy transferred from that brilliant celestial orb to my earthbound, over-weight body. This fantastic health advice comes on a day when all a person could be exposed to this morning is doom and gloom, rain, low hanging clouds, with a possibility of hail and high winds. Not a single ray of sunlight can be found.

I’m hoping for a bright sunshiny day tomorrow so I can put my new knowledge into action. I can’t think of a better diet than pulling up a lawn chair, sipping a cup of coffee, and relaxing in the morning sun. It beats the heck out of the treadmill or exercise bike.  

copyright © April 2014 by L. S. Fisher

http://earlyonset.blogspot.com

sources: Northwestern University press release: “Morning rays keep off pounds.” Research funded by National Institutes of Health. http://esciencenews.com/articles/2014/04/03/morning.rays.keep.pounds

“Exposure to Morning Light Can Help You Lose Weight.” http://www.hngn.com/articles/28004/20140403/exposure-to-morning-light-can-help-you-lose-weight.htm

Money.USnews.com: “The Heavy Price of  Losing Weight.”  http://money.usnews.com/money/personal-finance/articles/2013/01/02/the-heavy-price-of-losing-weight

Let’s Talk About Women and Alzheimer’s

Before Alzheimer’s came into my life, I considered it to be an equal opportunity disease affecting males and females the same way. During my years of involvement, I began to realize that Alzheimer’s had a bigger impact on women than on men.

The 2014 Alzheimer’s Disease Facts and Figures includes a “Special Report: Women and Alzheimer’s Disease.”  This report highlights several studies that bear witness to the higher burden the disease has on women.

Out of all Americans with Alzheimer’s, two-thirds are women. Why? The most obvious factor is age. Women have longer lifespans and are more likely to reach the age of highest risk. Women are more concerned than men about developing Alzheimer’s, and with good reason. A sixty-five year old woman has a 20 percent lifetime risk of developing dementia during her lifetime. I don’t know about you, but I’m not happy with those odds.

I admit that before Jim developed dementia, I never gave much consideration to how unfair Alzheimer’s is to the person with the disease and the caregiver. I had no concept of the breadth and scope of the disease—how all consuming it can be.

Being a caregiver for my husband was never a part of my vision of our life together. Jim never seemed like the type of person who would ever be anything but decisive, a man of strong convictions, protective, creative, and loving. Never in my wildest imagination could I have envisioned the turn our lives would take when he developed dementia. And certainly, if an Alzheimer’s type of dementia had ever entered my mind, I would have thought of him as an elderly man, not one who wouldn’t live to see his sixtieth birthday.

The job of caregiver falls more often on women. They are two and a half times more likely than men to be that caregiver who provides the around the clock care for a loved one who is in the late stages of the disease. These female caregivers are made up of daughters, wives, siblings, friends, and in younger onset—mothers. In a study of caregivers, indications are that females are substantially more likely than males to provide intimate personal care for their loved one with Alzheimer’s. Just like me, other women caregivers take on bathing, dressing, toileting, and changing adult diapers.

Caring for a loved one is hard work and stressful. Women report a higher level of emotional stress than men (62 percent vs. 52 percent) and greater physical stress (47 percent vs. 24 percent).

Women’s employment is affected adversely by caregiving. Twice as many women as men give up employment entirely to be caregivers. Seven times as many women as men go from working full-time to part-time in order to be a caregiver.

I was in my forties when Jim developed dementia and worked full-time. Quitting work wasn’t an option for me. There were times when the challenges of juggling a job and caregiving seemed overwhelming. Jim required only about four hours of sleep at night and that meant that I often went to work sleep deprived and emotionally drained.

When I hired caregivers to come into my home, they would often arrive late, or call at the last minute that they couldn’t come. Because they were undependable, it made me, as an employee, feel undependable too. Fortunately, my employer allowed me the flexibility I needed to work around caregiving issues. They knew that from time-to-time I would receive a phone call and have to go home to tend to the latest challenge—wandering, refusing to let someone else do something for him, or just to comfort him when he was scared or depressed.

I was young compared to most women who cared for spouses with Alzheimer’s. When I found myself feeling defeated, I couldn’t help but wonder how elderly ladies managed full-time caregiving.

Think about it—as a woman you are more likely to be a caregiver for a loved one with Alzheimer’s, and then, after years of caregiving, you are more likely to develop the disease. We women have a large stake in ending Alzheimer’s. Our brains matter to us, and we want to keep them healthy throughout our lifetimes. We need to join together as women, as caring people, as advocates to end Alzheimer’s now.

copyright © March 2014 by L.S. Fisher

http://earlyonset.blogspot.com

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

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