Monday, June 29, 2015

Glen Campbell: I’ll Be Me

Last night I watched  Glen Campbell…I’ll Be Me on CNN. The film was released in 2014 and documents Glen’s Alzheimer’s journey.

I heard about the documentary a few years ago at the Alzheimer’s Advocacy Forum. My mom went to D.C. with me in 2013 when Glen Campbell was there. He fairly oozed charm and posed to have his photo taken with many of the ladies, including my mom. 

I’ll Be Me was painful for me to watch. It brought back memories of Jim’s loss of communication and musical skills. At least only family witnessed Jim’s problems and not a paying audience.

The family told of their struggles to make sure they walked the fine line between the cathartic benefits of Glen performing and being vigilant of him embarrassing himself. Audiences were tolerant. If he played the same song twice, so what? At least they got to see him perform.

Campbell’s physician felt that performing on his “Goodbye Tour,” doing what Glen loved, helped
him maintain the ability to function longer. Sometimes his daughter, Ashley, had to tell her dad what key to play certain songs in. During their “dueling” instruments, her with a banjo, him with his guitar, she admitted that sometimes he didn’t always follow along. Glen relied heavily on teleprompters to remind him of the words to songs he had sung for years.

During his doctor visits, I heard some of the same questions with similar answers during Jim’s visits. When asked questions, he couldn’t answer, Campbell said, “I don’t worry about those things.” The doctor asked him who the first president of the United States was and Campbell replied, “My goodness, I don’t know. I don’t use that very much lately.” Jim would typically say, “I have no idea,” in a tone that indicated he didn’t care to know either.

Ashley testified in front of a congressional hearing on Alzheimer’s. Advocates in D.C. for the Alzheimer’s Advocacy Forum, wearing purple sashes, packed the room.  Ashley’s emotional testimony explained the changes in her relationship with her dad. She said it was hard for him to recall her name. Their times fishing together no longer lives in his memories.

When watching old family films, Glen asked, “Who’s that?” His wife, Kim, gently supplied the pertinent information: “It’s you, honey,” or “That’s your first wife,” or “It’s your oldest daughter.”

Jim once looked at photos from our honeymoon. I pointed at a photo of me, and playfully said, “Do you know who that is?” His answer, of course, was, “I have no idea.” The devil is in the details. Some of the most hurtful moments are when you realize what had been memories shared, become your memories alone.

The film shows the relentless progression of Alzheimer’s disease. By the time of his final performance on stage, Glen did not know it was his last performance.  Cal Campbell said that when his dad performed, “He actually becomes himself again.”

The story ended with the recording session of “I’m Not Going to Miss You.” At this point, Glen is already fading away but his eyes sparkle when he finally gets into the song. This song really tugs at the heartstrings. The idea stemmed from Campbell’s remark that he couldn’t figure out why everyone was so worried about him having Alzheimer’s. He said, “It’s not like I’m going to miss anyone, anyway.”

Kim finally placed Glenn in a home where he could get twenty-four hour care. His is reportedly happy and healthy. He is losing his communication skills and doesn’t recognize many of his visitors.

As is often the case, family is feuding. Two of his children by a previous marriage have taken legal action against Kim. Family is often at odds about how to care for their loved one. I’ve seen families torn apart at a time they should be pulling together. Each person has to come to acceptance in their own way and on their personal time schedule.

Glen Campbell’s Alzheimer’s story is heartrending and, oh, so familiar to millions who have lived a similar story. 

Copyright © June 2015 by L.S. Fisher

Saturday, June 20, 2015

What Survivors?

I’ve been seeing images of a “Limited Edition” T-shirt for Alzheimer’s Awareness. The shirt says, “Supporting the Fighters, Admiring the Survivors, Honoring the Taken, And Never Giving Up Hope, Alzheimer’s Awareness.” People seemed to be excited about buying these T-shirts.

I don’t want to burst the bubble of enthusiasm, but this shirt certainly does not promote Alzheimer’s awareness. At our annual Walk to End Alzheimer’s, we cannot have a victory lap for our survivors. The cold hard fact is that Alzheimer’s leaves no survivors.

Alzheimer’s is the sixth leading cause of death in the United States and the only one in the top ten that cannot be prevented, cured, or even slowed. Twenty million Americans understand this harsh reality: five million with the disease and their fifteen million unpaid caregivers.

Alzheimer’s does have fighters—millions of them. We have warriors with the disease and care partners who raise awareness and dollars so that we can have survivors someday. These brave people share their stories, their struggles, their highs and lows as they live life to the fullest. They celebrate each moment of joy and refuse to cave in to despair.

Several years ago, I met a forty-year-old woman in Washington, D.C., who had early onset Alzheimer’s. As we told our personal stories to our senators and representative, she said, “I know it’s too late for me, but I want a cure for my children. I don’t want them to have to go through this.” She is gone and has been for several years, but we continue her fight to make her wishes come true.

Family members and loved ones honor the taken. Jim was taken before his sixtieth birthday. We honor the loved ones we’ve lost each time we join a Walk to End Alzheimer’s. We honor them by becoming advocates, or “voices,” for Alzheimer’s research and hounding legislators to push for increased funding.

Advocacy makes a difference! This week we received word that due to the relentless dedication of Alzheimer’s advocates, increased research funding is making its way through the legislative process. The House Labor, Health and Human Services Appropriations Subcommittee has approved an additional $300 million in Alzheimer’s research.

Harry Johns, Alzheimer’s Association CEO said, “Should this increase become law, it will be the largest annual increase ever in federal Alzheimer’s research funding. Following today’s actions, the full House Appropriations Committee is expected to consider this legislation next week. We also anticipate that the Senate will begin to move their own version of the FY16 Labor-HHS bill next week.”  

Advocates will never give up hope! The National Plan to Address Alzheimer’s Disease is to find a cure or effective treatment by 2025. With adequate funding to support the bright scientific minds at work on a cure, our goal is within reach.

When our work is done, I’ll be at the front of the line to buy a T-shirt that has “Admire the survivors” on it. Until then, we need to keep the momentum going and stick to the Plan to find the elusive cure and/or effective treatment for Alzheimer’s no later than 2025, but hopefully much, much sooner.  
      
Copyright © June 2015 by L.S. Fisher
http://earlyonset.blogspot

Sunday, June 14, 2015

The Most Expensive Disease

Alzheimer’s is the most expensive disease in America. Our country faces an impending financial crisis. One out of every five dollars Medicare spends is for a person with dementia. This care amounted to $150 billion in Medicare and Medicaid expense last year.

The cost to Medicare for persons with dementia is three times higher than for seniors without the disease. The emotional impact on caregivers contributes to health issues for them. Caregivers pay an additional $9.7 billion for their own health care.

Dementia is costly to families. It strips away at the family finances. This is a disease fraught with unexpected expenses ranging from adult personal care products to hiring a sitter. Whether caring for a loved one at home or placing them into long-term care, families are hit emotionally and financially on a regular basis. It becomes a way of life.

When facing the dementia financial crisis, families sometimes sell possessions they would have never considered under normal circumstances. We sold our lake property. It had once been our intention to retire there, but retirement was never to be for us.

Recently, I read an article about Leon Lederman, 92, that really made me pause. Lederman, along with two other scientists, received the 1988 Nobel prize for discovering a subatomic particle. He said it was just collecting dust. His wife mentioned a more practical reason for the sale. They faced financial uncertainty when Lederman was diagnosed with dementia, and the $756,000 they received for the pure gold medal will make them more secure.

A gold medal doesn’t hold the sentimental value of a home. A story that made headlines in May of this year was about a former Japanese prisoner of war who needed 24-hour care after being diagnosed with dementia. This story could have taken place in the USA, and probably has. This particular article took place in Cornwall and affected ninety-four-year-old Charles Atkins. His family said the government was “throwing him on the scrapheap.”  The dilemma for the family was that unless he sold his home, his two daughters were responsible for his expensive care.

Can’t happen here, you say? Twenty-eight states have filial responsibility laws where adult children can be forced to provide necessities for their indigent parents, including long-term care. Most states don’t enforce these laws, yet. As the crunch becomes tighter for state assistance, they may begin to close their own financial gap. In most states, this involves civil court action, but twelve states impose criminal penalties and three states allow both civil and criminal.

Of course, if you are like me, you want the best care for your parents. Unfortunately, the enormous cost of nursing home care could force middle-class Americans into bankruptcy in a hurry. It’s a sticky situation, and if selling the family home gets you and Uncle Sam off the hook, it may seem the lesser evil.

Yes, Alzheimer’s is the most expensive disease in America and it looks like it is only going to become five times more costly by 2050. This just puts the exclamation point behind the statement, “End Alzheimer’s Now!” Without a cure for Alzheimer’s, the government, and families, are going to be faced with the un-facable, the impossible, the unimaginable.

There is “Hope for Alzheimer’s.” Science is making great strides toward finding an effective treatment for Alzheimer’s and ultimately a cure. We need to keep pestering our legislators! If each of us help in the fight to end Alzheimer’s through awareness, persistence, and downright refusing to give up, we can make a difference.  A big, life-changing difference. 

Copyright © June 2015 by L.S. Fisher

Friday, June 5, 2015

Alzheimer’s Awareness, Go Purple!

Purple is my favorite color, and coincidentally, it is also the Alzheimer’s movement color. June is Alzheimer’s and Brain Awareness Month and an ideal time to deck out in purple.

I signed the purple pledge. I changed my Facebook profile photo to the “END ALZ” logo. The pledge is to wear purple gear on June 21, the Longest Day, and throughout the month of June.

The “Longest Day” ties well to Alzheimer’s. As any caregiver can attest, some days are not just long—they are endless. Alzheimer’s is an equal opportunity disease affecting people like you and me and creeping into the ranks of the famous.

It was pretty interesting to see that the cast of  “The Big Bang Theory” have joined the fight against Alzheimer’s. Along with other well known celebrities, they performed at “A Night at Sardi’s” to benefit Alzheimer’s. They were joined by Joey McIntyre, singer/songwriter and a member of New Kids on the Block. The fight is personal to Joey since his mother recently lost her battle with Alzheimer’s. He said, “Mourning is a process, and I have to take my time with it.”

Alzheimer’s can bring families together, and it can tear them apart. Or both. When Glen Campbell announced he had Alzheimer’s, his family was admired for the way they rallied around him. Due to his family’s support, Glen was able to perform well after he had the disease. Eventually, he wound up in long term care. Now the family is at odds with his fourth and present wife, Kim. His children from previous marriages claim Kim Campbell has barred them from seeing their father, failing to provide Glenn with basic personal care items, and being financially irresponsible. Some of his children are trying to get a judge to appoint a guardian to protect his interests.

Often family members disagree on how to provide excellent care for the individual with Alzheimer’s. They fuss and fight and before you know it, they become more focused on having their own way than what is really and truly the best resolution to their quandary.

The more you learn about the disease, the more likely you are to make good decisions. The primary care partner will experience a different level of stress and angst than the occasional visitor. Until you walk in their shoes, be very, very careful about criticizing. This isn’t to say that everyone is cut out to be a caregiver. Some aren’t. Unless you are willing and able to step in full-time proceed with caution. As long as your loved one is not in danger or neglected, be supportive. Be a part of the solution instead of adding to the problems.   

Share your stories, your experiences, and show your support for caregivers and people with the disease. Create awareness with the color purple!

My goal is to wear purple every day in June. This is a pretty easy goal for me since I have a wardrobe rich in purple, even without considering all the purple walk shirts I’ve accumulated over the years. Just in case I get up and forget to don my Alzheimer’s gear, my finger and toenails are both polished purple. My toenails have the addition of a layer of sparkle.

Sparkle on the nails makes them look darned cool, but it is a real chore to remove it. That’s when I have to drag out the super-duper polish nail pads and sometimes finish with a bottle of remover. If only we could remove Alzheimer’s from the face of the earth!

We want to turn the world purple in support of the 47 million people worldwide who are living with dementia. By being an advocate, a supporter, and raising awareness, the brain you save may be your own. GoPurple and #ENDALZ—not just for June, but for a lifetime.

 Copyright © June 2015 by L.S. Fisher


Take the pledge at www.alz.org! 

Wednesday, May 27, 2015

Chasing After the Wind

Sometimes I’m in the right place at the right time to hear a message that resonates with me. That message may be at a high-priced conference in some exotic locale, or it could be in my hometown during one of pastor Jim Downing’s sermons.

Sunday morning, he prefaced his sermon with the thought that it might be one of the most important messages he would ever give. I don’t remember his exact words, but he gave his self-depreciating smile, and said we might be thinking “Nice words, preacher” and just go on our way and side-step the importance of the message.

His message was based on Ecclesiastes 4:6 “Better one handful with tranquility than two handfuls with toil and chasing after the wind.” We seem to think that more is better, but is it?

When I was growing up in a family of eight, we learned that it wasn’t necessary to have a lot of material possessions to get by. Mom and dad bought us school supplies and clothes at the beginning of the year. I had a few dresses to wear and one pair of school shoes. We always had the box of sixteen crayons, not the giant boxes some of the other kids had. Funny thing was, I still received the same education.

I had two dolls and not a lot of other toys. Mom always saw that I had books to read. She ordered a children’s version of Reader’s Digest Condensed Books. Through those books, the world of adventure opened to me. One of the first stories I read was “Little House in the Big Woods.” I loved it! I was reading about a girl like me that didn’t have much, but enjoyed every moment of being a kid.

After I grew up, my life has run the gamut from lying awake at night trying to figure out how we were going to pay the bills to the abundance of today. I worked more than three decades to be able to afford enough clothing to outfit a small nation and enough shoes to earn the nickname Imelda Marcos Junior. I have collections to the point of almost having collections of collections.

Which brings us to the first of three of pastor Jim’s suggestions, “throw out.” I’ve been doing some of that with bags of clothes and shoes I’ve taken to Open Door. I know I have to get more serious about paring down on the overload of material possessions.

Pastor Jim hasn’t channeled into my internal self, so obviously, I’m not the only one with a crazy busy schedule. My calendar is often double or triple booked. I’m so over stretched that I have reminders of my reminders. “Cut back,” he said. Cut back on schedules. If I look through my calendar I can see things I want to do, but those are often pushed aside for something I feel obligated to do. I’m retired, but by golly that doesn’t seem to give me a lot more time. My days are full and often hectic. I haven’t found time to write for months and months. Not. One. Story.

Perhaps, part of my time crunch comes from the interruptions of emails, phone calls, social media, Google, and that feeling of constantly being connected. Let’s face it…if I forget my phone on a simple trip to town, I’ll turn around and get it. My smart phone is like carrying a home office with me everywhere I go. It dings, buzzes, and even whistles at me. “Turn off,” he said. He has a really good point. How do you relax when you are at the beck and call of, well, just about everyone. Not just people you know, but people you don’t know. How the heck did that happen?

By de-cluttering our lives, we have more time to enjoy life’s breathtaking moments. We have time to look at a beautiful sunset and admire the way the clouds form in the sky. I remember my brother Donnie and I playing, “What does that cloud look like?” We saw angels, ships, faces, and all kinds of goofy things in the clouds. Now if I look at a cloud, I might see the possibility of rain, but it’s been years since I studied the clouds and tried to picture an object.

I’ve been under the misguided notion that’s just the way life is now-a-days. It doesn’t have to be. Is it possible for me to throw out, cut back, and turn off? I’ve been much too busy chasing the wind to enjoy a mere handful of tranquility.  

Copyright © May 2015 by L.S. Fisher
http://earlyonset.blogspot

Friday, May 22, 2015

Four Reasons to Take a Leap of Faith

My granddaughter is on the track team of a small school that doesn’t have their own track. When she decided to jump in addition to running, she watched a You-Tube video and practiced in the yard. It took a real leap of faith for her try her skill at a track meet. Last year, she advanced to Sectional in the triple jump, and she was determined to do the same this year. At Districts this year, she placed third in triple jump and long jump.

A storm lurked behind dark clouds on the day of Sectionals. Her goal at Sectionals was to place in the top four and advance to State. After the long jump, she was disappointed because her jumps were short of her personal best, and it didn’t look like she would advance. The skies opened up and a torrential rain sent us to the truck and her to the athletes’ tent.  After the downpour, she jumped the triple jump and, although she placed better than last year, she clearly wasn’t in the top four.

She wasn’t really open to hearing she’d done her best, or how proud of her we were, or “there’s always next year.” We left after her events and by the time we stopped in town for pizza, she was feeling better. Track season was over for the year. She’d had a great year, so her leap of faith to compete had paid off.

It got me to thinking about when a leap of faith is personally beneficial.

#1. When failure, or even humiliation, is possible. When I decided to start my Early Onset Alzheimer’s blog, doubts churned in my mind. Did I have anything of interest to say and would anyone read it? Would I have mistakes in it that people would criticize? Would I get hate mail? Negative images almost kept me from pushing the post button that first time. Once I made the decision to move forward, I never looked back. It is obvious that success is not possible without a chance of failure, and failure can be humiliating. It’s moving beyond the fear that lets us know the thrill of accomplishing our goals.

#2. To follow your dream. My dream was to write. Little did I know when I was clacking out fiction stories on a manual typewriter that the future would hold many ways of publishing my work. Eventually, the time came when the mechanics of writing became about a thousand percent easier and publishing as easy as pushing the “post” button. Not everyone wants to be a writer, but almost everyone has a dream they want to follow. What’s yours? Take a leap of faith and go for it!

#3. Leave a dead end situation. We’ve all been there. The job that went nowhere. The relationship that caused more harm than good, or was downright scary. It is really hard to leave the known for the unknown, but given the correct circumstances, it can be life changing. I once had a job working for a family business. It wasn’t all bad, at first. I liked what I was doing but as the married couple’s relationship went south, conditions became unbearable. I needed a job so I stayed even after I began to dread going to work each day. I was forced into leaving the dead end situation when they sold the business. Thankfully, the demise of the company forced me into the job market and launched a life-long career at a job I loved.


#4. Keep improbable from being impossible. I dropped out of college when I married Jim. Finally, when my children began school, I returned to our local junior college to earn a two-year degree. Still, I always regretted not getting my bachelor’s degree, and the older I got, the more improbable it became that it was going to happen. The opportunity to get a degree came at a really bad time. I was working full-time, Jim was in the nursing home, and I was already squeezing in time to volunteer for the Alzheimer’s Association. Although the situation seemed impossible, I entered an eighteen-month cohort program offered by William Woods University. I graduated in 2005, easily the oldest student in our class. Was it worth it? You bet it was.

Taking a leap of faith doesn’t always pan out, but not taking it strips you of the sweet taste of success.

Oh, during that downpour at the track meet, we missed the announcement of the long jump winners. My granddaughter’s coach collected her medal and gave her the good news that evening that she had advanced to State. Will she win a medal at State? Maybe, maybe not, but without taking that leap of faith she would have never had the opportunity or experience.

Copyright © May 2015 by L.S. Fisher
http://earlyonset.blogspot

Thursday, May 14, 2015

Alzheimer’s Research—Climb the Highest Mountain


When you name your company after the highest mountain in North America, you know you have great expectations. A new company, Denali Therapeutics, has taken on the challenge of finding a cure for neurodegenerative diseases, including Alzheimer’s. Their task is formidable, and that is the reason they chose Denali for their name.

The former Genetech researchers begin their venture with an astounding $217 million. Denali’s chairman of the board, Dr. Marc Tessier-Lavigne, believes that the time is right for breakthrough treatments for neurodegenerative diseases.

This group of scientist plan to break away from the study of drugs to block beta-amyloid. Their focus will be on genetics, which has led to effective drugs for cancer. Scientists have discovered new genes which are linked to brain diseases such as Alzheimer’s, ALS, and Parkinson’s. They believe these “degenogenes” will lead to a better outcome than previous drug studies.

Hallelujah! How often have you heard that if you keep trying the same thing you’ll have the same outcome? Alzheimer’s research is at an impasse. No one has found the illusive cure, or even a good treatment for the disease. It is time to try a complete new approach and these seem like just the guys to do it.

The company is looking at brain inflammation and the substances that develop between brain cells. They are concentrating on the factors that cause brain cells to die when a person develops a brain disease. They are already looking at twelve drug targets!

The brightest brains in the world have banded together to tackle the most baffling disease left to conquer. Now, they hope to engage the Food and Drug Administration in fast tracking brain drugs for Alzheimer’s as they did for HIV and other diseases.

Today I’m wearing a tee-shirt that says, “Your brain contains about 100 billion nerve cells. Each One is Worth Keeping Around.” I want to keep as many of those precious cells as I can. Don’t you?

Copyright © May 2015 by L.S. Fisher
http://earlyonset.blogspot




Friday, May 8, 2015

The Alzheimer's Box

Several years ago, I went through piles of papers from my various volunteer organizations and threw them into different totes. This was a haphazard way of sorting them and was much quicker than making file folders and filing them away. Besides, at the time, my file space was quite limited so that may not have been an option.

Today, I sorted through the Alzheimer’s tote. It was quite an interesting assortment of papers.  The first task at hand was to sort into three piles: recycle, burn, and file. I quickly pared down the amount of information to keep to a smaller stack.

In the Alzheimer’s box, I found articles that I thought were lost forever. I found the article about my friend, Karen Henley, published in Newsday Magazine. Karen was caring for her forty-two-year-old husband Mike, who had familial early-onset Alzheimer’s disease. Her story is one of courage, perseverance, and most of all, love.

I found an article that made me smile. My friend, David Oliver, was one of the researchers who biked in the Alzheimer’s Breakthrough Ride. I met him when we both served on the local Alzheimer’s chapter board of directors. He had joined the cross-country ride (San Francisco to D.C.) for the segment from Sedalia to Jefferson City. I drove into town early for the send off. David and four others took the scenic route to Jefferson City. David was dedicated to go above and beyond to further Alzheimer’s research funding. David passed away from cancer in March. It was especially touching to see this article and remember his wonderful sense of humor and optimistic outlook on life.

I found several years of Advocate’s Guides and Facts and Figures from some of the fifteen Advocacy Forums I’ve attended over the years. I go through these two books each year to see what we’ve accomplished and what we need to tackle. They serve as a valuable resource for me.

Of course, I had several folders of Alzheimer’s Walks, previously known as “Memory Walks.” I was able to pitch a lot of old forms. At one time, we had to make our own! I spent hours developing signup sheets for team captains and posters for events. It’s much easier now that the Alzheimer’s Association and the chapter has everything online and with a few clicks, we can download and print any report, form, or poster we need.

Then to top it off, there’s always the odd pieces of information. Prints of the airline tickets for one of the years my granddaughter went to D.C. with me. I found a stub from the Smithsonian and a map of the Old Town Trolley. I pitched an outdated congressional book.

Tucked in among the Alzheimer’s papers were a few from Sedalia Business Women. Oops, guess that was in the wrong box entirely. That one is still intact. Who knows, when I go through it I might find more Alzheimer’s memorabilia.

It’s kind of sad to look back at years and years of events that have come and gone. I’m happy to say my passion for Alzheimer’s advocacy is still alive. I’m just looking forward to the day when it is no longer necessary and Alzheimer’s is eradicated.      

Copyright © May 2015 by L.S. Fisher

http://earlyonset.blogspot