The Last Frontier

Jim was always adventurous and talked about the places he really wanted to go, but hadn’t been. With his extensive traveling, it was a pretty short list. He wanted to go into space—the final frontier of Star Trek fame.

More realistically, Jim wanted to go to Alaska—the last frontier. Jim talked about Alaska and the wide open spaces, mountains, snow, ice, sled dogs. I thought about glaciers, landslides, grizzly bears, danger, and goosebumps from bone-chilling below zero temperatures.

Jim and I were alike in many ways, but this frontier business wasn’t one of them. He always said he wished he had lived back in the frontier days.

“Have you ever thought about how long it would take to cross Kansas?” I asked him. It seemed to me that it took forever to cross Kansas in a car, and couldn’t fathom making that trip in a wagon. “Not to mention the little problem with having to hang onto your scalp.” He really didn’t want to get me started on this topic. I didn’t think about the adventure—I thought about the inconveniences. Not even Matt Dillon or Rowdy Yates could have lured me back into the untamed Wild West. No thank you.

As far as the “final frontier”—space—no way did I want my body rocketed into the wild blue yonder at warp speed. I won’t even say what going into space would scare out of me.

Jim never personally saw either of these “frontiers” but, ironically, I was invited along for an Alaskan cruise. My brother and sister-in-law planned to treat Mom to a cruise and even stranger was that it took only about a nanosecond for me to agree to go as my mom’s roommate. The process took several months, but on the first of July, we flew to Seattle to board the ship for our cruise.

As I looked at blue icebergs in Tracy Arm Fjord, rode a train to White Pass and Yukon, gazed at glaciers, admired upside-down tree gardens, rode in a horse-drawn carriage, and cruised on a luxury liner that reminded me of the Titanic—especially as we navigated through the icebergs. The rugged landscape does indeed look like a frontier.

The cold was the extreme opposite of the weather at home. Cell phone conversations were filled with the triple-digit weather while I shivered in my coat. I heard about the drought at home while we lamented the elusive sun and the almost constant rain.

Okay, I’ll admit, that seeing Alaska from a private deck on a Carnival cruise ship is not in anyway a hardship . We spend days relaxing and cruising past majestic mountains, icebergs, and glaciers. Heck, I could even watch from the comfort of my bed. And we never knew what it was like to be hungry. It seemed that we spent our time onboard either eating or being entertained at one of the full production shows. My mom, of course, enjoyed the casino and we were forced to keep her company. We had trouble finding our way to the dining room, but never had a problem finding our way to the casino. Then, when we would make our way back to the cabin after our activities, our bed would be turned down, a mint placed on the pillow, and towel art animals would be on the bed. Snuggled beneath the covers, it was easy to forget how chilly the weather was outside.

It was a trip I enjoyed, but Jim would have been ecstatic to behold the Alaskan landscape. At times, I could almost feel Jim looking over my shoulder and know he would have loved spotting whales, bears, and wildlife. I used his “animal watching” binoculars to get closer views of the wonders unfolding around us.

Traveling with Jim is one of the things I miss. Jim loved frontiers whether final or last. Strange, unchartered ground brought out his sense of adventure.

Copyright © July 2012 L. S. Fisher

http://earlyonset.blogspot.com

  

ABC Article about Alzheimer’s International Conference Features Jim’s Story

Recently, I heard from Dr. Christopher Tokin, an ABC health writer, requesting an interview for an article about new therapies for Alzheimer’s disease. After reading my blog and one of my books, he wanted to include information about Jim in an article introducing the Alzheimer’s Association International Conference in Vancouver.

Being the skeptical person I am, the first order of business was to check out Dr. Tokin to make sure he was the person he said he was. After a Google search, I was confident that Dr. Tokin was a health writer for ABC news. I had no problem answering his questions as long as he did not ask for my social security number, birth date or bank account number.

I was getting ready to leave on an Alaskan cruise so I used my time in Seattle to answer Dr. Tokin’s interview questions. I’ve been interviewed before by national news media including a telephone interview while I was at a conference in Boston. I know that national media will interview several people and then choose one or two of the stories to include in the article. When I read the previous article, my interview was not included. This time, I just didn’t mention the interview and thought I’d wait to see if Jim’s story was included in the article.

My first day at work after my cruise, I heard from my son.

“Did you know there’s an article online about dad?” He went on to tell me he was browsing the news on his cell phone when he saw an Alzheimer’s article. He started reading it and realized the Jim Fisher in the article was his dad.

“Dr. Tokin interviewed me before I left on the cruise,” I said. “He was going to send me a link to the article when it was published.”  I looked at the news feed on my phone and the article was indeed in the health section.

A few hours later, I received an email from Dr. Tokin with the link to the article. By then, the article had been shared on Facebook.

This morning, I went in to read some of the news from the conference and one of the articles is “New Drugs Aimed at Ending Alzheimer’s Decline.”  This in Dr. Tokin’s article. He used Jim’s story to personalize an article on new drug treatments. Two of the drugs targeting beta-amyloid, Eli Lily’s solenezumab and Pfizer’s bapineuzamab, are in Phase III clinical trials. 

The Alzheimer’s Association’s International Conference gives the world a chance to learn about research targeting 2025 as the date to find a cure for Alzheimer’s. Scientists try many approaches to diagnosing Alzheimer’s early and developing therapies to target the hallmarks of Alzheimer’s—beta amyloid plaques and tau tangles.

As the week unfolds, we will learn more about new studies like the one that shows a change in walking can indicate Alzheimer’s disease before cognitive symptoms appear. People with undiagnosed Alzheimer’s disease may begin to walk slower and take shorter steps. The interesting thing about gait is that some people performed well on the clinical tests, but at home, family members observed that their loved one walked much slower. Walking speed, like other symptoms of dementia, rely on family observations as a key component of making a diagnosis.

When you know someone well, you notice things about them that doctors don’t. A ten-minute exam might miss many of the symptoms of serious brain disorders. When Jim developed dementia, it was my observations of changes in his behavior and skills that convinced the doctor that it was more than depression.

We lost Jim more than seven years ago, but he is not forgotten by the family that loved him. Jim would have been pleased to know that his story provides an illustration of hope for the 5.4 million Americans with Alzheimer’s.

“New Drugs Aimed at Ending Alzheimer’s Decline.”  

http://abcnews.go.com/Health/Alzheimers/drugs-aimed-ending-alzheimers-decline/story?id=16766730

copyright © July 2012 Linda Fisher

http://earlyonset.blogspot.com

Lunch at Perkins

I met Carolyn outside of Perkins for a late lunch. “There’s my sister’s car, so she is already here,” she said.

Just inside the door, Carolyn hugged stood a pretty dark-eyed woman, so I knew this was her sister Julia. We admired the pies while we waited to be seated. How well this lunch would go remained to be seen.

I was about to meet a woman who was beginning the Alzheimer’s journey. Julia’s husband has early onset dementia, and she is just beginning to understand what a complex and emotional road lies ahead.

We studied the menu and had pleasant, light conversation just like any three women without any serious cares. We contemplated the merits of breakfast versus lunch. As usual, I chose the tilapia and Julia followed suit. Carolyn easily chose breakfast.

Julia pulled up pictures on her phone of her beautiful daughters and grandchildren. Her eyes sparkled with love and delight as she talked about her family.

Eventually, the talk turned to Alzheimer’s, the elephant in the room we had been avoiding. I wanted Julia to lead the conversation.

She talked about how everyone seemed to have a solution. She has already read up on the scary disease and knows how limited the choices are and how unpredictable day to day can be.

The things she was talking about reminded me of a man who interrupted a presentation I was in the process of giving to announce he had cured his wife of Alzheimer’s. He had given her some kind of concoction that, according to him, was a miracle cure.

“How is she doing?” I asked.

“Oh, she passed away, but she didn’t have Alzheimer’s anymore.”

I didn’t relate this story to Julia, but I shared others. We talked about medication. Her husband is using an Exelon patch. I told her that none of the Alzheimer’s medications worked for Jim and that he had side effects. We talked about how some medications work the opposite on someone with dementia. A prescription used to calm most people may hype up someone with Alzheimer’s. Julia had a good grasp of how important it is to tweak medications and monitor them.

“I’m confident that I can take care of him no matter what happens physically,” she said. “What I’m not sure about is how I can handle the grief.” Her eyes now sparkled with unshed tears.

“Grief is the hardest part,” I said. “There is no defined beginning and it just goes on and on.” There wasn’t any way to sugar coat her emotional future, and I wouldn’t insult her by saying it would get better.

I was impressed that Julia did understand even at this early stage what her biggest challenge was going to be. Initially, most of us worry more about the physical challenges of Alzheimer’s—behavior, incontinence, feeding, bathing—instead of the emotional upheaval of losing someone we love one memory at a time.

Julia does has the same important advantage that I had. She has family to love her and support her throughout the challenging days ahead. Julia doesn’t need a lot of unsolicited advice from well-meaning friends or acquaintances. She will get her medical advice from a trusted physician, and her emotional support from her family and close friends.

We met as strangers and parted as women who had bonded. With the love and support of her sister and the rest of her family, she will make it through the journey. As I hugged her goodbye, I’m confident that she is a strong, grounded woman who will meet the challenges ahead of her.

Copyright © July 2012 by L.S. Fisher

http://earlyonset.blogspot.com

  

Milestones in Life's Journey

My day begins with music when my radio comes on a few minutes before the alarm tells me it is time to jump out of bed. Last week, I heard a song by Hometown News called “Minivan.” The song tells a story about the milestones in a man’s life through the vehicles he owns. Dad trades in his Corvair for a butt ugly station wagon. The trade was so traumatic for a young boy that he hid beneath the dashboard when they drove through town. Then as he grows up, another milestone, he buys his own car…a four by four…and cruises for chicks. Of course, life doesn’t stand still so eventually, when he has kids of his own, it is time to trade in his pride and joy for a minivan.

As we travel through life’s journey, our trip is marked with milestones. From our first breath to our last one, we meet milestones with anticipation, or perhaps regret.

While day-to-day humdrum events fade into memory, milestones are set apart with their own set of reminiscences fraught with feelings. Our entire lives we move along looking forward to the next milestone. Do you remember how you wanted to be an adult so your parents couldn’t tell you what to do? Since being an adult took too long, you may have settled for getting your driver’s license—another milestone. Graduation, marriage, becoming a parent…more milestones.

The “Minivan” song struck a chord with me. It stayed on my mind, and I asked my son if he had heard the song.

“No,” Rob said, “but I’ve heard about it. One of the guys at work was talking about it.”

The song reminded me about a conversation at work last week. One of my co-workers mentioned how she and her family were ready to go out to eat and her oldest son, a teenager at the time, refused to go to town with them because they weren’t wearing designer jeans.

“He says he can’t believe he acted like that,” she said. “I was so upset at the time.” Now she laughs about it.

“That’s our job as parents,” I said. “We’re supposed to embarrass our kids.”

Looking back on those times that once mortified us can be some of our best memories. Distance can take away the anger and hurtful words and replace it with the powerful love we feel for family.

Sometimes family members talk about how embarrassing people with dementia can be. Especially those with frontotemporal dementia can be outspoken, or even rude, as they struggle with out-of-control emotions and verbal communication.

Each personality change is a milestone we dread. Jim, who had smoked from the time he was a young teenager until he was nearly fifty years old became completely intolerant of cigarette smoke. He constantly told his sisters, “You should quit smoking those damn cigarettes.” They merely laughed and agreed with him. Not satisfied with telling his sisters, Jim became focused on telling everyone he saw they should quit smoking. We walked out of Walmart one day and three or four people were sitting outside on a bench smoking. Jim walked over to them, pointed his finger to emphasize his words, and said, “You better quit smoking those damn cigarettes.” I hustled him toward the car before any of them had time to react.

As the disease progressed, Jim’s behavior became more erratic. On one trip to Eddie’s Drive-In, Jim picked up tip money off a table, and I made him put it back. We walked outside, and as I fastened his seatbelt, I discovered he had the salt and pepper shakers clutched tightly in his hands. When I took the shakers back inside, the waitress laughed and said, “Just when you thought you had him figured out he did something different.”  

I finally reached a milestone when I knew the disease was to blame, not Jim, and I was no longer embarrassed. In fact, I’ve found with age, I’m not easily embarrassed. When I was younger, I might have found myself beneath the dashboard just like the boy in the song. Now that I’ve traveled many miles along life’s journey, my philosophy is that it’s more important to see the view.

Copyright © June 2012

http://earlyonset.blogspot.com

Alzheimer’s Research: A Little Mouse Told Me

Picture courtesy Michael Muin

At our last Alzheimer’s Board meeting, we were treated to a tour of Missouri University’s Center for Translational Neuroscience. Our tour included the stroke laboratory, behavior core facilities, surgical suite, cell culture facilities, and neuropathology-histology laboratories.

This was the first time I had ever seen the inside of a research lab and it was doubly interesting to be inside a lab dedicated to studying the brain. One reason mouse models work well for Alzheimer’s research is their brains similarity to human brains.

I was impressed by how Alzheimer’s treatments can be evaluated, and the extensive research conducted on exercise and diet. Agnes Simonyi, PhD, is the researcher who “trains” the mice to find their way through a maze to measure spatial memory.

We saw the different mazes Dr. Simonyi uses in her research. One maze has symbols around the sides, such as an X or plus sign. One symbol has an opening beneath it. The mouse runs around and around until he discovers the opening. Each day the mouse is in the maze, he can find the opening by making fewer trips around the parameter, until eventually he heads straight for the symbol that shows the way out of the maze.

You wouldn’t think that watching a mouse run around in circles could be so fascinating, but the studies prove which therapies improve the mouse’s performance. When Dr. Simonyi showed us the graph, a few things became evident. Food and exercise make a big difference in memory.

One of the tests evaluated green tea. Oh, yeah, I thought, a human would probably have to drink a gallon of green tea a day to show a similar improvement in memory. As if she read my thoughts, Dr. Simonyi said, “The mice were given the equivalent of two cups a day.” She went on to show a wheel where the mice could exercise. It looked kind of like a treadmill for the little fellows—one of those contraptions were you run and run but don’t go anywhere. I didn’t see any little TVs like Brian’s Gym has. They were just running around and around for the fun of it, I guess.

The graphs showed  mice that exercised and drank green tea were the smartest of the groups, followed by the ones that only drank green tea. At the bottom were the mice that resemble most of us—not enough exercise and not paying attention to filling our bodies with antioxidants.

Dr. Grace Sun talked about her research comparing Alzheimer’s mice to their healthier counterparts. She talked about current Alzheimer’s therapies and how available drugs work only for a limited time. One of the studies Dr. Sun is working on is how a healthy diet, exercise, and stress reduction can be preventative therapies for Alzheimer’s. Some of the foods she mentioned as having a positive impact on memory are grapes, curry, green tea, and elderberries.

Dr. Sun said MU will host an international symposium on elderberries in June of 2013. These healthy berries are plentiful in Missouri and have always been popular for jelly and wine. “The Power of purple” in the June 2012 issue of Rural Missouri talks about the promise of elderberries as a super fruit. They aren’t the kind of berry you would eat fresh—they are too tart and not that tasty without a little sweetening.

I have often promoted the healthy brain initiative on my blog and the rule of “what’s healthy for your heart is healthy for your brain.” Nothing drives that home like having a researcher stand in front of you and talk about their personal observations of the benefits of a healthy diet and exercise.

Part of research is geared toward delaying the onset of Alzheimer’s. It would seem that an important part of the key is in our supermarkets, our gardens, and maybe even along the fencerows and road right-of-ways in rural Missouri.

If we pump up on exercise and eat a brain healthy diet, we can follow the example of the mouse in the maze. I’m looking forward to stocking up on healthy food and then being able to go straight to my car in Walmart’s parking lot instead of running around in circles until I happen upon it. I know it can happen because a little mouse told me—with a little help from his friends, the researchers at the Center for Translational Neuroscience.

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

Vietnam Veterans: PTSD and Dementia

It always seemed a little strange to me that my level-headed and intelligent husband developed dementia at such a young age. I always wondered how much his dementia had to do with his tour in Vietnam.

Years after the fact, it is now presumed that anyone who served in Vietnam was exposed to Agent Orange. There was a time when you had to prove exposure and that was not an easy task. Jim said that while they were in the jungle, they were sprayed with Agent Orange right along with the foliage. After the presumption of exposure, certain diseases among Vietnam veterans were considered to be service connected. Dementia was specifically excluded.

Jim had post-traumatic stress disorder (PTSD) before it was ever talked about. His Vietnam service left him wounded emotionally. Vietnam lived in his nightmares, in his breakdowns, depression, and through flashbacks. Vietnam was a parasite that clung to him and never lost its grip as it tried to suck sunshine from his soul and replace it with dark shadows.

Studies have linked PTSD with an increased risk of Alzheimer’s or dementia. Prolonged or acute stress damages the hippocampus, the part of the brain that controls memory. Veterans with PTSD have a 77% greater chance of developing dementia than veterans without PTSD.

The VA acknowledges a third of Vietnam veterans struggled with PTSD, and some of those lasted a lifetime. They don’t talk so much about how many lifetimes were cut short by alcoholism, suicide, or dementia.

The Internet has conflicting reports about Vietnam veteran mortality. They range from reports that Vietnam veterans are dying at an alarming rate to other reports that their death rate is only slightly higher than the rest of the population. The truth probably lies somewhere in between. It seems that of the Vietnam veterans I know, an alarming number of them died young. I know that Jim died much too young.  

Jim was haunted by Vietnam. He struggled daily to relegate his tour of duty to the past. It was a personal victory of heart over mind when he enjoyed his family and his music. Playing his guitar was his therapy.

Did Vietnam cause Jim’s dementia? I think it did. Is there proof? There never was enough to convince the VA. We couldn’t even prove PTSD because by the time we knew it was considered a reason for disability, Jim had dementia and could not tell his story. It didn’t matter than I had lived with him all those years and supported him through his mental collapses. It didn’t matter that as his current memories faded, the older memories haunted him even more.

The turbulent Vietnam war years did nothing to help returning veterans get their lives back. They were stigmatized and categorized in a way our military had never been before that war. The only thing that brings me comfort is that Jim did finally come to grips with Vietnam on a certain level. He wore a hat that said “Proud to be a Vietnam Veteran.”

On Memorial Day, I placed flowers in front of the columbarium. Jim would have loved the rows of flags placed in front of the wall. He loved his country, and I’m glad that he finally found pride in serving the USA.

Source: http://www.elementsbehavioralhealth.com/trauma-ptsd/ptsd-in-veterans-linked-to-dementia-in-later-life/

Copyright © May 2012 L. S. Fisher

http://earlyonset.blogspot.com

Older American’s Month: Never Too Old…

I just read an article about May being “Older American’s Month” and the theme is “Never too old to play.” I really like that theme and the message it sends. This made me wonder—how did I get older without knowing May was MY month? After all, I’ve been hearing from AARP for a long time now and it seems like every funeral home within a hundred mile radius has me on their mailing list.

From the article, I made my way to the website. I had to make sure that this wasn’t just a joke or something. The site has many cool things on it, including “The Best Ways to Play.”

·         Get Physical—okay, I admit that I dropped my gym membership at just the time when I needed it most. That’s how it goes. Once I got caught up in the endless cycle of being involved with three or four organizations, I just flat didn't have time to go to the gym. Now, my exercise consists of toting around several bags of papers, books, files, and reference materials. It just gets heavier and heavier.

·         Brain Activities—I pass this one with flying colors. My brain is so active that I can’t shut it off. I’m always thinking, planning, learning.

·         Bridge the Generation Gap—What gap? I’ve always loved people of all ages. I enjoy spending time with my grandkids, kids, aunts, uncles, and my mom. My friends are multi-generational.

·         Get creative—seriously? I write.

I have a pretty good handle on this older American thing. I have no shame when it comes to getting a senior discount.

At our Friendship Lunch yesterday, we had quite a discussion on the advantages of joining AARP. “Don has a lifetime membership,” Cindy said. “I really like the magazine.”

“I’ve been getting offers and I’m thinking about joining,” said Brenda, who just recently squeaked past the minimum age for AARP.

When we get older, we start to realize that we are not invincible and the obits are not our friends. We see former classmates, cousins, friends, and family fall to diseases that become more prevalent as we grow older. We cross our fingers and pray that cancer, heart disease, and Alzheimer’s stay away from us and those we love. The knowledge that we are mortal and vulnerable makes each pain free, sunshiny day more precious.

It is as if I’m on a carousel going around in circles with each day pretty much like the one before and strikingly similar to the one ahead. There is comfort in knowing that life is whirling along on an even keel. Anytime that life glides along in a smooth circle is a time to relax, enjoy the ride, and play.

Getting older should be a time when we can be more of ourselves. As my mother recently said, “I don’t care what other people think of me anymore. It just isn’t important.” Yay, Mom! We are all better off when we reach that turning point in life when we can live life the way we want to live it and not the way others want us to live it.

When we get older, we should be able to play to our hearts content. We are never too old to play, or to be young. No matter how old the calendar says I am—or how old I may look—I’m still young on the inside. Have you noticed how the bar for what is considered older, just keeps getting higher? Is today’s 60 the new 40?

It’s time to catch up on all those things we never had time for when we were younger. It’s  time to finish that bucket list. Maybe it’s time to join AARP. After all, we older Americans are all about discounts and bargains.

I scoff at people who indicate that I'm over the hill. All I have to do to feel younger is turn the XM radio to the 60’s channel. When I hear that music, I’m a teenager inside with a world of possibilities and experiences ahead of me. Age, after all, is only skin deep.

Copyright © L. S. Fisher May 2012

http://earlyonset.blogspot.com

Alzheimer’s Advocacy Frontlines

Roberta Fischer, Rep. Hartzler, Linda Fisher

If we want to declare war on Alzheimer’s, advocates and researchers form the frontlines. What’s at stake in this war? The lives of 5.4 million Americans living with Alzheimer’s disease will be lost. Who lies within the danger zone? One American in eight over age sixty-five has Alzheimer’s, and those who live to be eighty-five and older have a fifty percent chance of developing the disease.  

The war against Alzheimer’s begins with a battle called the Alzheimer’s Advocacy Forum. Our mission is to carry a strong message to our legislators to implement the National Alzheimer’s Project Act (NAPA) and co-sponsor the HOPE for Alzheimer’s Act. We are the faces and the stories of a heartbreaking disease that currently has no effective treatment or cure.

My sister Roberta and I traveled to Washington DC to join more than 700 advocates to speak with the VOICE of hope and reason. This was my twelfth consecutive trip, and you would think by now, I would just leave it to others. My reminder of why this is so important to me was reinforced by a side trip to the Veteran’s Cemetery on the way to the airport. I placed flowers in front of the columbarium to mark the seventh anniversary of Jim’s passing. I paused to reflect on the Alzheimer’s type of dementia that robbed Jim of not only his life, but also ten years leading up to his death.

Kathy and Sarah at Candlelight Rally 2012

Each year I see familiar faces, especially my good friends Kathy and Sarah, who have run the Alzheimer’s gauntlet from beginning to end. Then there are new faces of caregivers and people with Alzheimer’s who are reeling from the diagnosis and trying to cope with the drastic changes Alzheimer’s has made in their lives.

One of the early events each year is the candlelight rally. The event was scheduled to be at the Capitol Building, but weather forced it indoors. After stirring music and testimonials from former Congressman Moore and other advocates, we lit glow sticks and held them high in remembrance of our loved ones and to honor the caregivers and persons living with Alzheimer’s.

The roll call of the states was filled with exciting progress made in all fifty states. After a full day packed with research updates, advocacy training, and discussion of our federal priorities, we finished the day with the National Alzheimer’s Dinner where Meridith Viera served as Master of Ceremonies. The Profile in Dignity Award was presented to Pat Summitt, University of Tennessee Women’s Basketball Head Coach Emeritus, and her son Tyler. After a humorous film showing Pat motivating her team, she invited us to join a giant team to fight Alzheimer’s, and, of course, losing is not an option.

On Wednesday, we donned our purple sashes and armed with facts, figures, and personal stories, we headed out to storm Capitol Hill with our message. We asked for the resources to support NAPA. For the plan to be successful, we need a two-pronged approach. (1) The plan needs to include benchmarks that allow legislators to evaluate progress, and (2) resources of $100 million annually for Alzheimer’s research, education, and caregiver support.

In addition to NAPA, we asked for co-sponsors for the HOPE for Alzheimer’s Act. The Hope Act focuses on three key areas: diagnosis, care planning services, and medical record documentation.

I know from personal experience, the vital importance of these three areas. Because Jim was so young, it was hard to get a diagnosis. Once we knew he had dementia, care planning for him and support for me were key factors to consider. This Act allows the caregiver to discuss options with or without the person with dementia present. I kept record of Jim’s treatments, other medical conditions, and test results and provided the document to every specialist that treated him. For those who don’t have someone to do this, medical documentation would ensure the entire medical team was aware of all health issues.

After our visits, we entered the Capitol Building to see the House in action. As we went through security, the guard handed me my purple Alzheimer’s Association bag, and leaned close to whisper, “Thank you for doing such a good job.” As I smiled at him, I realized he knew the pain of having a loved one with Alzheimer’s.

Seven hundred Advocates made a commitment give a VOICE to Alzheimer’s research and care. In this war against Alzheimer’s, our VOICEs are indeed mightier than the sword.

Copyright © May 2012 L. S. Fisher

http://earlyonset.blogspot.com

Conversation with a Cab Driver

My sister and I rolled our suitcases down the sidewalk to the designated area to catch a cab to our hotel. We had come to DC to ask for resources to support NAPA (the National Alzheimer’s Project Act) and seek cosponsors for the HOPE (Health Outcomes, Planning and Education) for Alzheimer’s Act.

“What brings you to DC?” the cab driver asked after loading our luggage into the trunk. He spoke with an accent, which is the norm for Washington DC taxi drivers.

“We’re here for the Alzheimer’s Forum,” I replied.

“Is it for research?” he asked.

“We’ll hear about research,” I said, “but we are here as advocates.”

It seems that everywhere I go, I run into someone who has a personal experience with Alzheimer’s.

“My mother has Alzheimer’s,” he said. “Some days she seems okay, but other days she makes up things. She said that my sister and her husband got a divorce, and it wasn’t true.”

“That can happen,” I said. “People with Alzheimer’s get confused and think something is real when it isn’t. Sometimes they think someone is stealing from them.”

“Oh, yes,” he said. “My mother thinks that people are stealing from her.”

“Well,” I said, “she probably misplaces things and can’t remember where she put them so she thinks someone has stolen them. Of course, there is always the chance that someone could be stealing from her, so you want to make sure it isn’t true.”

“They don’t have a cure for Alzheimer’s, do they?” he asked.

“No, they sure don’t. That’s the reason we are here. We talk to our legislators about research funding.” Alzheimer’s deaths increased sixty-five percent while deaths from other major diseases declined.

Once again, advocates from across the United States were at our nation’s capitol trying to rally our senators and representatives to fund Alzheimer’s research.

 “My husband had an Alzheimer’s type of dementia,” I said. “It wasn’t Alzheimer’s but the Alzheimer’s Association helped me so much that I keep coming to DC each year.”

 The cabbie continued to ask questions about the disease affecting his seventy-seven-year-old mother. He told us his mother had come to the US from Somalia.  

“What is the difference between Alzheimer’s and dementia?” he asked

“You can think of dementia like an umbrella and beneath that umbrella are a lot of different diseases that cause dementia. Alzheimer’s is the main cause of dementia, but there are a lot of other diseases that can cause dementia, like Lewy Body disease, vascular dementia, or frontotemporal dementia.”

“Like an umbrella.” He nodded his understanding.

“Yes,” I said. “Dementia is a general term for people with memory loss and who have trouble performing daily activities. Different conditions cause dementia symptoms, including some that are reversible. That’s why it’s important to have a complete medical workup.”

It always concerns me that someone will assume his loved one’s memory loss is Alzheimer’s when it might be a condition that can be treated.

“The doctor said my mother has Alzheimer’s,” he said. “He said she didn’t have thyroid or a vitamin deficiency.”

“It’s good they checked those things out,” I said. We were pulling up to the hotel. “Be sure to contact your local Alzheimer’s Association chapter. They can help you cope with the changes ahead.”

We settled the tab and as I stepped from the cab, I told him, “I wish you the best with your mom.” He smiled and thanked me.

As I closed the door, my heart went out to the cab driver who had shared a slice of his life. His story is repeated  millions of time throughout this country and has a predictable ending, at least for now. Maybe someday I can share happier news with strangers I meet.

Copyright April 2012 by L. S. Fisher

http://earlyonset.blogspot.com

Midnight Thunder and Music

The April showers of a few nights ago morphed into a thunderstorm. The booming thunder awakened me from a deep sleep. There’s something about the sound of thunder that leaves me feeling vulnerable, and a little sad. I turned over to look at my clock and it was flashing on and off, off and on.

Since I didn’t have to work the next morning, I didn’t bother to set the clock and just went back to sleep. Thunder boomed closer, and as I tossed in the other direction, I heard music.

Music? Where could that be coming from? I thought it might be my cell since I had left it in my purse, but the music kept playing. I couldn’t hear the tune well enough to tell what it was, but I knew there was no reason music would be playing in the middle of the night.

The sound of music was replaced with rolling thunder. As I listened, the storm got louder and louder, rain pelted against the window, and I forgot about the music.

I used to be scared of storms, and Jim would hold me close when thunder came in the night. He was fearless and tried to convince me there was no reason to be afraid. That argument never gave me comfort when tornado watches turned to warnings.

The downside of spring is the storms that have passed through my life. Our journey through the land of dementia ended on April 18, 2005 when Jim left this world. Death rolled through our lives with the force of a tornado leaving an aftermath of eerie stillness behind.

You would think with the devastating tornadoes last year, I would still be afraid. It was only the noise and not fear that kept me awake during the storm Thursday night. As the storm faded into the night, I once again heard the faint sound of music.

Okay, it was obvious that I wasn’t going to sleep until I figured out where the music was coming from. I got up out of bed and wandered through the house, following the sound. In the hallway, I recognized the melody: “Winter Wonderland.” A few more steps, and I knew it was Brad Paisley singing. I crossed the room and walked to over to the docking station and turned off my iPod. I had to smile at a Christmas song competing with a spring thunderstorm.

On my way back to bed, I tried to reason how the iPod started up on its own. So maybe a jolt of electricity triggered the on button.

Or maybe, there wasn’t a logical explanation and it was a message. A reminder that storms pass, and music can chase away the most ominous moods.

Copyright© April 2012 by L. S. Fisher

http://earlyonset.blogspot.com