Grant to DIAN for Early Onset Alzheimer’s Research

Alzheimer’s is a worldwide disease, and the Dominantly Inherited Alzheimer’s Network (DIAN) is focused on familial Alzheimer’s that typically affects people in their thirties, forties, or fifties. The Alzheimer’s Association awarded a $4.2 million research grant to study this form of young onset Alzheimer’s.

Studying hereditary Alzheimer’s can speed up discovery of effective treatments, or hopefully, prevention. Although inherited Alzheimer’s is rare, it is the only truly predictable form of the disease. When a parent has the genetic mutation that causes hereditary Alzheimer’s, children have a 50/50 chance of developing the disease. Genetic testing can determine whether a person will develop inherited Alzheimer's.

The Alzheimer’s grant will be used to conduct experimental drug therapies internationally. The participants will be those who are destined to develop Alzheimer’s, but do not exhibit symptoms. The hope is to develop therapies that prevent the disease from happening.

The eleven groups that make up the DIAN network are following 150 participants with familial Alzheimer’s. Researchers have discovered that measurable brain changes can appear as much as 20 years before symptoms. Randy Bateman, MD, and associate professor of Neurology at Washington University School of Medicine, St. Louis, Missouri, explained the importance of a network of research facilities. “No single research center has sufficient numbers of people with dominantly inherited Alzheimer’s to conduct a large enough study to generate meaningful data.”

I met Randy in Washington DC several years ago when he attended the Alzheimer’s Action Summit and joined our Missouri group of advocates to visit our senators. Randy was definitely an asset to our group. We had our own researcher to share first-hand knowledge about treatments coming down the pipeline.

Although the genetic form of Alzheimer’s affects only 1% of people with the disease, the ability to study this group before onset gives a sliver of hope to all people with Alzheimer’s. Anything that will speed up the time it takes for Alzheimer’s disease therapy to become available to the public is good news.

Life is truly heartbreaking for those families dealing with familial Alzheimer’s. Even the ones who escape the disease through genetic roulette may have a parent, aunts and uncles, cousins, or siblings who develop the disease. Sometimes the ones who do not develop the disease spend a lifetime caring for their relatives who do.

I recently received an email from  Jessica whose husband tested positive for familial Alzheimer’s. He has not yet developed the disease, but she is already worried about him and her children’s future. The emotional turmoil of that family is immeasurable.

My friend Karen took loving care of her husband Mike throughout his battle with inherited Alzheimer’s. He passed away in February, and now she is at loose ends. “I thought I was ready, but it really hit me hard,” she said. Yes, Karen, I know exactly how you feel. I don’t think we can ever be ready to let go. Caregiving becomes such a part of life that we adapt to the new reality and that becomes our way to put love into action.

Kudos to the Alzheimer’s Association for providing research dollars to study this heartbreaking disease. My sincere wish is that Randy and his cohorts will be able to use this research to find a way to prevent Jessica’s or Karen’s children from developing inherited Alzheimer’s.

Copyright © March 2012 L.S. Fisher

http://earlyonset.blogspot.com 

Not According to Plan

I looked forward to St. Patrick’s Day and expected a day of good old Irish fun. Saturday would be a time to kickback and make the most of being Irish for a day. After all, I only get to wear my green nail polish twice a year—Halloween and St. Patrick’s Day. I figure at that rate, the bottle will last until I’m at least 150.

My plans changed when Uncle Jimmy passed away. His funeral was Saturday in Versailles where my mother lives. While I was there, I planned to visit Mom and then drop by the nursing home to see my brother Donnie.

The day started out beautifully. I left home dressed in green, of course, and wearing sandals. Yes, sandals. Here winter isn’t even officially over, and I take off for the day in open toed shoes.

The luck of the Irish wasn’t riding in the car with me. The closer I got to Versailles, the darker the sky. Rumbles of thunder, and streaks of lightning were followed by a downpour. The wind picked up, driving the rain with the force of a robo wash. I pulled off to a side road while first rain, then hail, pelted my car.

The storm passed, as storms always do, and I drove on. The bittersweet nature of funerals is that although it is a sad occasion, it is also family time. Many hugs later, the services began, and I remembered happier days.

Uncle Jimmy was a family recording historian, just like his namesake, my husband Jim. Several years ago, they took over my living room for weeks while Uncle Jimmy used a projector to roll his old 8 mm film and Jim videotaped the old home movies. They laughed and narrated, telling stories about the people pictured on the grainy black and white film.

After the funeral, Mom and I visited Donnie who was not having a good day. The nurse injected his medication into the feeding tube, and he drifted off to sleep. My mom sat on the edge of his bed, tears streaming down her face.

As we walked down the hallway, I said, “Mom, I think you need to do something to take your mind off this for a while. Why don’t I take you to the boat?” My mom loves to go to the casino and it always cheers her up.

This time, she just shrugged and said without enthusiasm, “Oh, if you want to go.”

I told Mom to call Aunt Lebetta and ask her to go. “She needs cheering up too.” My cousin Bonnie had just been diagnosed with lung cancer and further tests showed tumors in her brain. After spending the morning at the hospital, Aunt Lebetta was inconsolable about the bad news that only seemed to get worse.

 Mom called. “She just doesn’t think she can go.”

“Tell her that you ‘old hairpins’ need to do something to get your minds off your problems,” I said. “Reta would expect me to do that.” My cousin Reta coined the nickname “old hairpins” for her two beloved aunts.

“Bonnie is hallucinating,” Aunt Lebetta said when she got in the car. Bonnie told them that her dad, Uncle Melvon, had come to see her and told her not to be afraid. Bonnie talked about seeing butterflies.

“You know what the butterflies are, don’t you?” my mom asked. “Melvon saw a butterfly come out of its cocoon once, and he said that is what death would be like—you come up out of your shell and fly away a beautiful butterfly.”

After a few hours at the casino, my mom and aunt showed me their winning tickets. Since they seem to play until all the money is gone, I confiscated their tickets. “I’ll give these to you when we get ready to walk out the door,” I said handing them each $20. “When this is gone, we’re leaving.” They walked out with smiles on their faces, worries pushed aside for a few moments.

Today, the message at church was about the tribulations of Job. Our minister told a story about a man who asked a good friend with terminal cancer, “How does it feel to know you’re dying?”

The friend answered with a question, “How does it feel to think you are not?”

Driving home from church, I thought about how unfair life can be. Nobody plans to have a terminal illness like Alzheimer’s or cancer. Life itself is terminal and just doesn’t go according to plan. No matter how Job-like life is, we can take comfort knowing that when the time comes we will rise up out of our ugly cocoons and emerge as beautiful butterflies.

Copyright © March 2012 by L.S. Fisher

http://earlyonset.blogspot.com

The High Cost of Alzheimer’s Disease

The latest Alzheimer’s Association Fact Sheet gives hard data about the high cost of living with Alzheimer’s disease. The Fact Sheet begins with the statement:  The graying of America means the bankrupting of America – and Alzheimer’s is a major reason why.

In 2012, caring for Alzheimer’s will cost $200 billion. Medicare and Medicaid take the brunt of these costs. Medicare bears the largest share, $104.5 billion, and Medicaid is in second place with $35.5 billion.

Those who have a loved one with an Alzheimer’s type of dementia know that although the government looks like the biggest loser on paper, families take a harder hit with both emotional and financial tolls.

More than 15 million caregivers provide 17 billion hours worth of unpaid caregiving. The monetary value of this caregiving is $210 billion—the emotional cost cannot be measured.

Alzheimer’s is not just an expensive disease; it is costly. The highest costs are not in dollars, but in broken relationships as families and caregivers adjust to a new reality.

As hard as it is to provide care for a loved one with Alzheimer’s, 60 percent of caregivers find emotional stress to be the hardest part of caregivng. A third of caregivers report being depressed. Alzheimer’s caregivers have increased health problems directly related to being a caregiver. Nationally, this translates into an additional $7.8 billion health care costs for the caregiver.

Have you hugged a caregiver today? Better yet, have you offered help, and meant it? I’m not talking about “If there’s anything I can do…” without following up to find out what you really can do to help. I’m referring to watching a loved one for a few hours to relieve the primary caregiver. Family members should work out a schedule so that each member can contribute to the wellbeing of both the caregiver and the person with dementia.

A woman I met a few years ago thought it was totally her dad’s responsibility to look after her mother. After all, he was the one who promised to care for her “in sickness and in health.” She stubbornly refused to help her dad. To be perfectly honest, I felt like shaking her, but instead I encouraged her to take on more responsibility for her mother’s care. She did finally help after her dad was hospitalized from the stress of caring for his wife.

I’ve seen families pull together for the good of the person with Alzheimer’s. It takes more than one person to provide 24-hour-a-day care. I was lucky that Jim’s family, my family, and our family were available and willing to help. I could not possibly have kept Jim home as long as I did without this family support.

Not all families work as a team, some are shattered by arguments over caregiving, or even whether their family member has dementia. Denial is common and it is hard to acknowledge that someone you love could have a disease that could erase memories.

  

No matter how drastically a person with dementia may change, they can still feel your love. As hard as being a caregiver is, and although it may seem a thankless job at times, your reward comes from knowing that you’ve done your very best. That is something that will stick with you long after your loved one is gone, and you can look back with no regrets.

Copyright © March 2012 by L.S. Fisher

www.earlyonset.blogspot.com

Memory Day – Capitol Here We Come

Wednesday was Memory Day and hundreds of advocates converged on the Missouri State Capitol. After being briefed on the issue we were to discuss with our legislators, we donned our purple Alzheimer’s Association “beauty queen” banners and set off to deliver packets.

My favorite part of Memory Day is meeting with other advocates who have become my friends over the years. Along with people that I expected to see, I noted a familiar face in the group surrounding Linda Newkirk, the executive director of the Mid-Missouri Chapter.

“Aren’t you in the wrong group?” I asked Evelyn a fellow Business Women of Missouri member.

“I’ve been involved in the walk for years,” she said as I gave her a hug. This wasn’t the first trip to Memory Day for either of us, but somehow this was the first time we had noticed each other.

Before heading out to our appointments, we helped honor some members of our state government who have moved our cause forward. First up was Lt. Govenor Peter Kinder who served as the chairman of the Missouri Alzheimer’s Plan Task Force. An executive summary of this plan was included in the packet for the legislators. This report crafted by the 19-member task force gives some of the highlights of the past year.

The Missouri Alzheimer’s chapters awarded Leadership of the Year Awards to Senator Kurt Schaefer and Representative Margo McNeill. Patti, Janie and I had to leave before the ceremony ended to be on time for our first appointment.

We had only one priority this year: increase the Alzheimer’s Service Grants to $300,000. In 2006, we received $539,000. This was reduced 25% in 2010, and this year’s budgeted amount is $150,000. These grant funds were used by the Missouri Chapters to provide respite care for families with loved ones living at home.

I can speak from experience about the importance of respite funding. The only financial help we qualified for was respite from our local chapter. Jim was too young to qualify for any of the senior services that are in place to help the elderly.

Most of the legislators were sympathetic to our request to reinstate Service Grants, but as one aide put it, “Tell us where the money is going to come from and we might consider it.” I’m sure they have groups knocking on their door every day asking for more funding, or at least to not have funding cut. It seems like senior services are often the first items to hit the chopping block.

I was more impressed with my representative, Calib Jones, who took time to sit and talk with us, although he was on his way to a committee meeting. After we explained the shortfall, he said, “I’m not on the budget committee, but I’ll certainly talk to someone who is.”

It would seem to be a logical choice to fund respite to help caregivers keep their loved ones at home longer. Sixty percent of Missourians placed in nursing homes depend on Medicaid to pay for their care. Isn’t it more logical to spend $2.45 per year for each of the 110,000 Missourians who have Alzheimer’s than it is to spend on the average more than $51,000 per person for nursing home care? With nursing home care calculated at roughly $140 per day, if 307 people delayed going into a nursing home for one week, the state would break even.

After a whirlwind of visits, we went outside and lined up on the steps for a photo op. The strong wind not only sent hair flying out of control, but nearly gusted some of the advocates right off the steps.

I was tired after the visits and my feet hurt. On the walk back to my hotel room, I thought about how necessary it is to get boots on the ground for such an important service. Hopefully, the economics of providing respite care make sense to the legislators, and when they vote on the budget they will remember purple banners and the advocates who came to visit on Memory Day 2012.

Copyright © March 2012 L. S. Fisher

http://earlyonset.blogspot.com

The Heart and Brain Connection

February is heart month. First, we have Valentine’s Day with heart-shaped reminders of love, and our thoughts turn to romance. With romantic love, sometimes the heart and brain may not seem to be connected. Our brain may tell us that we should or should not love someone, while a recalcitrant heart leads us in a different direction.

I attended an annual event Saturday that is much more geared to health than a box of Valentine candy—Go Red for Women. The room was filled with a veritable sea of ladies dressed in red. Sally Lockett, a local businesswoman, pulls this event together each year. We were entertained by a fashion show of vintage red dresses while we dined on a yummy, heart-healthy lunch.

Being so involved with the Alzheimer’s Association, I have long been aware that what is healthy for your heart is good for your brain. A healthy diet and exercise benefits both the heart and the brain.

The Alzheimer’s Association and the Centers for Disease Control collaborated on a report about the heart/brain connection. The Healthy Brain Initiative: A National Public Roadmap for Maintaining Cognitive Health lays the groundwork to promote brain health. Vascular health and cognitive health are intertwined. The Initiative’s goal: “To maintain or improve the cognitive performance of all adults.”

When you think about it, a healthy body improves quality of life. We would all rather be active throughout our lifetimes that suffer from declining health. When we indulge in unhealthy activities are risk factors for heart disease, mental decline, cancer, and numerous other issues that can go wrong as we age. Smoking, excessive drinking, overeating, or sedentary lifestyles can creep up on us as a major problem that predicts a bleak future instead of the one that we want.

Maybe we can’t change everything at once about our lives but right now is a good time to set personal goals to work toward heart health and improve our chances of maintaining cognitive throughout the years ahead.

Good for your heart—and also good for your brain:

• Exercise! Get up off the couch and move.

• Increase your nutritious food intake. Yes, I said increase. Fill up on fruits, vegetables, fish and lean poultry, and whole grains. You’ll eat a lot less unhealthy food. You can lose weight without going hungry.

• Drink in moderation.

• Don’t smoke. If you smoke, quit. It’s healthier for you and everyone around you.

• Learn healthy methods of relaxation—meditation, exercise, massages to name a few.

• Exercise your brain by working puzzles, playing games, taking a class, reading, writing, or any activity that allows you to hone your cognitive skills.

• Increase social interaction—spend time with friends and family, church family, or volunteer.

• Good dental health is important. Get regular checkups and floss every day.

The list gives me ideas for ways I can personally reduce risk of developing debilitating conditions, but I haven’t been able to get my act together. When I had my gym membership, after my workout I was so hungry I couldn’t resist drive-thru windows. Now that I’m eating healthier, I don’t exercise enough.

I’ve managed to lose ten pounds by making better food choices and that in turn is snowballing into improving my overall health. Imagine my surprise when I went in to have my follow up endoscopy and the nurse asked, “Is your blood pressure always that low?” It was low enough that I hadn’t even recognized the numbers as blood pressure.

I’m a work in progress. My goal now is to make sure that I progress in the right direction. I know that if I put my heart into it, I can do it.

Copyright © 2012 L.S. Fisher
http://earlyonset.blogspot.com

Flowers for Alzheimer’s: Unlock the Mystery

In their quest for the key to unlock the mystery of Alzheimer’s, researchers are taking a closer look at tau. The hallmarks of Alzheimer’s are plaques of the protein beta amyloid and tangles of the protein tau.

Just exactly what causes the plaques and tangles are somewhat of a mystery, as is their exact role in the disease. Most research has been on ways to eliminate plaques, but a study at Columbia University Medical Center, New York, delved into how tau tangles spread in the brain.

Of course, this study was not done on humans—it was based on tau introduced into the frontal lobes of mice. The valuable insight from this study is that tau appears to spread like a virus, or cancer, jumping from neuron to neuron, across synapses, and spreading to other parts of the brain.

This discovery is a clue. According to Dr. Scott A. Small, co-author of the article published in  PLoS One, this discovery indicates that in the future early detection and treatment could be used to stop the spread of tau in the human brain. Small said, “It is during this early stage that the disease will be most amenable to treatment. That is the exciting clinical promise down the road.”

Another article published in the February issue of Science Express also compares the spread of Alzheimer’s disease to cancer. In fact, this is a study of how the cancer drug bexarotene has cleared the beta amyloid protein (plaques) from test animals by increasing ApoE. Cognitive function in the mouse models improved.

This is an already developed and tested drug so the process of determining what dose levels would be effective in humans to treat Alzheimer’s may move somewhat faster. The study has a cautionary note for caregivers of people with Alzheimer’s to not ask doctors to prescribe bexarotene for Alzheimer’s. This is an unapproved use of the drug.

I’m not sure why, but for some reason as I reviewed these two articles, I was reminded of a book I read when I was a teenager called Flowers for Algernon. Maybe it was all the talk about experiments on laboratory mice and the way success may not necessarily translate to humans. In Daniel Keye’s book, the story is a series of journal entries written by Charlie, a man with an IQ of 68, who has the same experimental surgery that improved the intelligence of the laboratory mouse, Algernon. After the surgery, Charlie’s IQ skyrockets to genius level. The surgery on Charlie and Algernon has the complete appearance of success—that is until Algernon begins to decline mentally and dies. Charlie’s decline is as sure as Algernon’s, but he requests flowers be placed on Algernon’s grave.

Just like in Algernon, success in mice doesn’t necessarily mean success in humans, but it is a start. By attacking the hallmarks of Alzheimer’s, these two scientific studies show new approaches to stopping Alzheimer’s in its tracks. Science moves slowly and it will be many more years before this discovery will translate to an effective treatment for the 5.4 million Americans with Alzheimer’s. 

The goal set during review of the National Alzheimer's Plan is to prevent and effectively treat Alzheimer’s disease by 2025. Although thirteen years seems like a long time, it would be worth the wait if we can place flowers on the grave of Alzheimer’s—not on the graves of those who die from the disease.

Copyright © February 2012 by L. S. Fisher

http://earlyonset.blogspot.com

Family Circle: A Funeral and a Birthday Party

My Mom on Her 85th Birthday

A family is a circle of love that surrounds your heart. If you are from a large family, you may not see some of your relatives for years at a time. Unfortunately, it seems like funerals are the prime place to see cousins, aunts, uncles, brothers and sisters.

I’ve had two chances to connect with family members in the past week. As tradition would have it, the first family get-together was a funeral. Aunt Mable was Jim’s aunt, and when I called her “Mable” she corrected me. “I’m Aunt Mable,” she said in her gruff tone. I never made that mistake again. After spending more time with Aunt Mable, I realized she played an important role in many lives. In addition to her own large family, she opened her heart and home to nieces and nephews who needed a surrogate mom.

Aunt Mable developed Alzheimer’s during her last years. It was heartbreaking for her children to visit her knowing that some days she would not recognize them.

Her funeral was a lovely celebration of her life, and Aunt Mable would have been pleased to see the hugs shared between family members that had been separated for too long. I had planned to attend the visitation and not stay for the services, but when I sat next to Uncle Jewell and Aunt Mary, I just couldn’t leave. Seeing them brought back memories of many fun weekends together. We went on fishing trips, to bluegrass festivals, or sometimes we had big jam sessions at our house.

I remember one time we went to the Truman Dam Visitors’ Center. Uncle Jewell was clowning around so much that people began to follow him around mistaking him for a paid entertainer.

My Mom, Lula Capps, Playing Music

Funerals are a bittersweet connection with family, but birthday parties are much more upbeat. Saturday, we celebrated my mom’s 85^th birthday at an intimate gathering of more than a hundred relatives and close friends.

The party took place at the Ambush, once a favorite honky-tonk in Morgan County. It is past its heyday, but judging from the cars and people crowding into the restaurant and bar, it made a one-night comeback.

With a family the size of ours, not everyone was able to make it. As I looked at my sons and their families, I couldn’t help but compare my childhood to theirs. I’m not even sure how many first cousins I have, but my oldest grandkids have only two first cousins, and my youngest grandkids only three.

During my growing up years, my cousins were my playmates and best friends. We collectively share memories of playing endless games at grandma and grandpa’s house on lazy summer Saturdays. During the evening hours, we chased fireflies while mom and my uncles played guitars and sang country or gospel songs.

At the party, my brother, Jimmy, and a friend took the stage to play music. My mom, true to her normal age-defying behavior, joined my brother for a while to play her guitar and sing with him. Later, two of my Fisher family nephews and their group played. In my mind’s eye, I could see Jim smiling to see his family tradition carried on by a younger generation.

As the evening wore down, my brother announced that they were going to sing one last song. After a variety of country, southern rock, and beer-drinking music, they closed with a gospel song. Voices blended as family members, young and old, sang the praiseful words of “How Great Thou Art.”

As we hugged our farewells, we remained optimistic that our next family gathering would be a happy occasion and goodbye, a temporary break in the family circle.

Copyright February 2012 by L. S. Fisher

http://earlyonset.blogspot.com

Inspired By a Coincidence

Today I was cleaning out a file that I had forgotten existed. It was simply marked “Alzheimer’s” which covers a lot of territory. This particular file contained an assortment of national and chapter newsletters, various newspaper clippings, brochures, notes and letters from Mid-Missouri staff, and miscellaneous odds, ends, and memorabilia. The file had been untouched for the past five years.

It was a letter I had written to our family physician that transported me back in time. I had no recollection of writing the letter and read it with fresh eyes.

The letter began with “I have made arrangements with…Guest Home to provide daycare for Jim two days a week beginning in February. For some time I have not wanted to leave Jim by himself during the day while I work. His mother has been keeping an eye on him and preparing his meals for him. Jim no longer has a driver’s license and cannot dial a telephone. It is really hard to know what he will be able to do from day to day as his dementia progresses.”

To this point, I’m wondering why I wrote his doctor this letter.

“If I can get him to cooperate, daycare will be good for him. He doesn’t really do anything during the day besides watch TV. I think the stimulation of being around other people would be good for Jim. I also worry about his mom being so tied down with him and not being able to do a lot of things she likes to do. I also need a backup plan in case his mom would be unable to watch him. I am hoping that daycare will provide us with enough relief that we can keep Jim at home as long as possible.”

As I read on, the purpose of the letter came to light.

“I think if you suggest that he go somewhere during the day to get out of the house and be around other people, he will do it. I don’t know if I will be able to convince him that it would be for his own benefit, but I think he will listen to you.”

With the doctor’s help, we convinced Jim to give eldercare a try. The place I chose was on my way to work and I could just drop him off. After the first day, he didn’t want to go back. I remember pleading with him to go and he balked, but eventually I loaded him into the van. I felt much like a parent dropping off a child at the babysitters. Jim took his guitar with him and spent the day in an out-of-the-way spot playing the same song over and over. He didn’t socialize with anyone or participate in any of the bingo or card games the elderly residents played. 

After a few short weeks at daycare, the Guest Home called me and told me they were terminating his care. It seems he picked up his guitar and walked out the door. He had made it to the highway before a staff member missed him and went after him. They just couldn’t be responsible for someone who wandered off.

I had already decided that the daycare arrangement wasn’t working for Jim or me. He was stubbornly insisting he didn’t want to go “today” every time I tried to take him. It just wasn’t working out the way I had envisioned.

The next step was in-home care. That presented a new set of problems due to a high turnover with the service and the last minute calls with excuses why the designated caregiver couldn’t come that particular day. Some days no one showed up and the service didn’t know why. It seemed that they never had a substitute available.

A little over a year after I wrote the letter, I placed Jim in long-term care. We had run out of options, and he needed twenty-four hour supervision.

The letter brought back a rush of emotions. For a few short minutes, I relived the depression, frustration, and responsibility of being a primary caregiver searching for solutions to an ever-shifting kaleidoscope of problems.

I put the letter away with the other memories in the file folder that I couldn’t toss into the trash. As I replaced the letter I noticed the date at the top: January 18, 1999. The letter was written thirteen years ago today. It seems more like another lifetime, another me.

Copyright © January 2012 L.S. Fisher

http://earlyonset.blogspot.com

Focus on the Positive: Notice the Red Cars

I started the New Year out right by attending a Jennifer Yazell presentation. Jennifer, CEO of Golden Egg Communication, is a dynamic speaker capable of motivating a die-hard pessimist.

Jennifer teaches that you get more of whatever you focus on. It is logical that if you focus on the positive, you become more motivated.

One of the tools she used to drive home the point was a film clip called “Red Cars.” As the driver of a red Chevy Malibu, I understood this video perfectly. When I bought a red car, I began to notice other red cars. Every time I drove into a Walmart parking lot, it seemed like everyone was driving a red car. Sometimes I had to push my horn-honking button to figure out which red car was mine.

One day I walked out of Walmart carrying a bag of groceries and pushed the unlock button as I approached my red car. I opened the door and started to put my groceries in the back seat, but a vacuum sweeper was in my way. I immediately realized that either the vacuum fairy had visited my vehicle, or I was trying to put my groceries in the wrong red Malibu. Apparently, I was a little too focused on red cars in general and not my car in particular.

Of course, red cars aren’t the most important focus in my life. I firmly believe focusing on the positive gave me inner peace that became my lifeline when Jim developed dementia.

Some chunks of time are so challenging that even Polly Anna would pop anti-depressants. If your loved one has Alzheimer’s, you may wake up each morning with the sense that something is out of balance and dread facing the day. Alzheimer’s is most assuredly a depressing and sad disease over which you have no control. Either your doctor tells you the prognosis or a few Google searches later, you learn the eventual outcome.

Alzheimer’s takes years or even decades to run its course. It’s hard to retain optimism, but if you become overwhelmed by the negative implications of an Alzheimer’s prognosis, the disease has claimed two victims.

When the doctor diagnosed Jim with dementia of the Alzheimer’s type, it was the most crushing moment in our lives. Once we got past the initial shock, we survived on denial for a while. Eventually, we recognized that the disease was progressively taking over our lives.

As we adjusted to our new reality, the darkness lifted. We began to focus on activities we could still enjoy together and not on the disease. Because of that change in focus, we made the most of the reprieve given to us during the early stages.

I won’t try to convince you that suddenly everything was okay. Dementia is a series of losses and the grieving process is ongoing. The key to survival is to focus on the positive, and find ways to take control of your attitude.

The diagnosis was a turning point in our lives, but it wasn’t all negative. Before Jim was diagnosed, my life consisted of getting up in the mornings, going to work, coming home at night preparing dinner, watching TV or reading a book, going to bed and start all over the next day.

After the diagnosis, I contacted the Alzheimer’s Association. Before I knew it, I joined a support group, coordinated the Memory Walk in our town, became a local and national Alzheimer’s advocate, and gave presentations to civic groups.

My circle of friends grew exponentially. Instead of feeling sorry for myself, volunteering became my “red car.” By focusing on others, I received the gifts of friendship and purpose.

I’m not saying I wake up each day and jump out of bed with enthusiasm. Sometimes I can be a grump until I’ve had my morning coffee. I do normally wake up with a mental list of events, activities, or potential accomplishments for the day. In fact, often my To-Do list cannot be completed in one day, one week, or one month. That doesn’t discourage me. After all, it is a New Year and I predict that every item I focus on will be finished before the end of the year.

Copyright © January 2012, L.S. Fisher

http://earlyonset.blogspot.com 

When a Holiday Heart Isn’t a Good Thing

During the holidays, news abounds about those generous people who have holiday hearts and give away donations to complete strangers. Secret Santas pop up all over the place, and we hear heartwarming stories about them giving away $100 bills.

I witnessed a Secret Santa type of moment at Cracker Barrel a few weeks ago. An elderly gentleman tried to pay for his dinner and the waitress said, “You don’t owe anything.”

“What?” he said. “Where’s my bill?”

“It’s already paid,” she said loudly as she leaned closer so he could hear. “The couple sitting at that table,” she pointed to show him, “paid for your meal. They are already gone.”

The elderly man seemed a little puzzled, but he sat and leisurely drank another cup of coffee. I thought he might have taken the extra time to assure himself that he really didn’t owe anything. The couple that paid for his meals had holiday hearts—the good kind.

I would like to alert caregivers to a different type of holiday heart that physicians nationwide are talking about on television. It seems that a combination of overeating, the stress of the holidays, and partying can create havoc with your heart.

People who don’t normally drink tend to overindulge during the holidays. My son refers to New Year’s Eve as “amateur night” in reference to people who don’t know their alcohol consumption limit.

After the chaos of planning and pulling off a holiday party, it may seem like the perfect way to relax and enjoy. For some, the consequences can be frightening and life threatening.

The symptoms of holiday heart syndrome:

• You feel lightheaded and dizzy.
• You are short of breath.
• Your heart beats faster than normal and you have an irregular heartbeat.

If you experience these symptoms, cardiac specialists recommend that you stop drinking alcohol and drink cold water to rehydrate yourself. Coughing also helps to reset the heart’s rhythm.

If these symptoms don’t go away within ten to fifteen minutes, it is time to call 911. You may think this seems overdramatic for a little drinking and overeating, but the holidays are primetime for a heart attack. Five percent more people die from heart-related deaths during the holidays especially on Christmas Day, the day after Christmas, and New Year’s Day.

Drinking is not the only problem. Overeating causes its own set of heart threatening risk factors for those who may have underlying heart disease. An increase in fat and sodium can put a strain on the heart that can lead to a heart attack.

Moderation in food and drink will keep your holidays merrier, not to mention healthier. It will also make that New Year’s resolution to lose weight more attainable if you don’t gain that extra five or ten pounds during the holiday season.

Here’s a non-alcoholic toast that your holiday heart is healthy and filled with joy and generosity.

Copyright © L. S. Fisher

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