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

Thursday, April 30, 2015

What Is Alzheimer's Disease?


At the first Alzheimer's Memory Walk I coordinated, a reporter from a local radio station placed a recorder beneath my chin, and asked, “What is Alzheimer’s?” When he had asked for an interview I expected him to ask what our financial goal was for the walk, why I was personally involved, what the money was used for, who our sponsors were, what it was like to be a caregiver, or even why purple was the “official” color. For some reason, it never occurred to me that he would ask me to define Alzheimer’s disease.

I believe my answer was, “Alzheimer’s is an incurable degenerative brain disease that affects memory and a person’s ability to perform daily tasks.”

Alzheimer’s is not an easily defined disease. Even if you give a text book, or dictionary, definition, it falls so far short of the scope of the disease that you might as well describe a malignant brain tumor as “a headache.”

Yes, official definitions might give a clinical description that says “a general term for memory loss and other intellectual abilities serious enough to interfere with daily life.” I’m not so sure that this disease “interferes with” daily life so much as it replaces life with a new reality. You go to a place where nothing is the way it had been, and you know it never will be the same.

It is important to know what Alzheimer’s does to the brain, otherwise, you will expect the impossible. Without the knowledge that the brain is deteriorating, it is too easy to believe that someone is being willfully stubborn or “pretending” they cannot remember.

In 1906, Dr. Alois Alzheimer, a German psychiatrist and neuropathologist, had a fifty-one-year-old patient, Auguste Deter, who died after she exhibited odd behavior and suffered from memory loss. During the autopsy of her brain, Dr. Alzheimer discovered shrinking of the cortex, and the presence of amyloid plaques and neurofibrillary tangles. Amyloid plaques and tau tangles became the hallmark of Alzheimer’s disease.

Most research centered on ways to rid the brain of amyloid plaques. More recently, researchers at Mayo Clinic have focused on tau. The study’s lead author, Neuroscientist Melissa Murray, Ph.D, in Brain described the role of tau as “railroad ties that stabilize a train track that brain cells use to transport food, messages and other vital cargo throughout neurons.” She described tau as “the driver of Alzheimer’s.”

As research moves closer to unlocking the mystery of Alzheimer’s, it is important to note only 45% of those with Alzheimer’s, or their caregivers, report being told of the diagnosis. This compares to 90% of people with cancer and cardiovascular disease knowing their condition. Why is it so important to know of an Alzheimer’s diagnosis since the disease is incurable and has no treatment to slow the progression?

I know from experience that crucial decisions need to be made while the person with the disease can help make them. It is important to get finances in order and to put in place medical and financial durable power of attorney documents. Knowing the diagnosis will also help families connect with community resources.   

The video attached to this blog explains how Alzheimer’s affects the brain. To know how it affects lives and hearts, talk to a person with the disease or a caregiver. They are all too familiar with the daily challenges that truly define the disease.   


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

Thursday, April 16, 2015

Death and Taxes

April is a month that makes me think of death and taxes. April 15 came with alarming speed as for the first time in a decade, I filed a joint return. Of course we used a handy-dandy program to plug in the numbers, but what can I say, other than taxes are a little bit complicated. Bottom line turned up a shocking sum that I owed in taxes. Even paying what I thought was an unreasonable amount of quarterly estimated taxes throughout 2014, I wound up in debt to the IRS and to the state of Missouri.

Now, to prepare for the current year. Last year’s estimated taxes were only about a third of this year’s amount. Ouch! For all my complaints about taxes, I feel fortunate that I have a great retirement plan.  

What is it they say about death and taxes? April is also the month that hurts my heart. Jim left this world April 18, ten years ago. A decade. It doesn’t seem possible that it could be that long ago when I can remember that day so plainly. Funny, how the more you want to forget something, the less likely you are to do it.

The only positive thing I can say about Jim’s death is that it gave me back the man I knew before dementia. During the years struggling in the grip of the disease, it came to a point where the person he was faded, and he became a different person. In order to make it through that tough time, I often refused to compare who he was to who he had been. It was easier to accept the unacceptable changes and love him “as is.”

After Jim’s death, I eventually was able to embrace the man he was before the disease. I could smile at old photos and memories before the dark days of dementia. I could remember our Colorado vacations, our trips to Oregon, and our big adventure of building our own home. So many good memories to outweigh the sad times.

Life is a balance: good and bad, smiles and tears, joy and pain. You can’t fully appreciate one without the other. If you were never sad, you wouldn’t appreciate being happy. Part of the wonder of life is that we don’t know what is going to happen the next day. Life can change in a heartbeat. Our world can turn upside down and it may take years, or decades, for it to righten again.

Ben Franklin said that death and taxes were the only two certain things in life. As for taxes, I guess, it means we do have income, and we can be thankful for that. It’s hard to find much good to say about death unless we can say we lived fully until that time. Jim lived fully until dementia made that impossible.

On April 18, I want to remember Jim’s life and not his death. I want to remember his laugh, his corny jokes, and most of all, his loving heart.

Copyright © April 2015 by L.S. Fisher

http://earlyonset.blogspot

Wednesday, April 8, 2015

Unlikely Friendships

You’ve always heard of fighting like dogs and cats, so Harold was concerned when the stray kitten showed up on our doorstep. It was a little worse for wear: tail torn off and bloody back legs. The kitten was dehydrated and hungry. What else can you do when a teeny kitten refuses to leave, but just sits there mewing much louder than you’d think possible?

Enter Neptune into the household ruled by Lucy. Just a short year before, Lucy had wormed her way into our hearts in the exact same manner—a stray who took up residence.

Harold was worried that Lucy wouldn’t like the cat. I introduced them by letting them touch noses, and they had many staring contests. The cat stayed on the front porch, and Lucy was queen of the deck.

Cats being curious, Neptune eventually approached the deck. At first, the dog barked and Neptune backed away. That didn’t last long. Soon Neptune was darting in front of Lucy and scooting behind the grill.

“The cat shouldn’t be on the deck,” Harold said as he shooed Neptune away. A few minutes later, the cat slid through the rail to venture on the deck again.

After a few weeks, Lucy quit barking at the cat and they declared a truce. The cat took over Lucy’s bed, and Lucy would lay beside it and nose Neptune. Sometimes they got a little rowdy, but neither seemed to be scared of the other.

While I was gone to the Alzheimer’s Forum, Harold said, “The cat is going to have to go. They mock fight and one of them is going to get hurt.” I don’t believe he was worried so much about Lucy hurting Neptune as he was about Neptune scratching Lucy.

By the time I got home, he had to show me how they acted. When he took Lucy for a walk in the backyard, the cat went down the steps side-by-side with the dog. Then, the cat ran up a tree, only to sidle down and launch a sneak attack.

All was quiet when we were inside. On the surveillance camera, we saw them laying together on the same chair while four other chairs remained unoccupied. Now, Lucy prances about each morning anxious to go onto the deck to play with her unlikely friend.
 
It seems that throughout life, we all have unlikely friends. At the Forum each year, I look forward to spending quality time with my two friends, Kathy Siggins and Sarah Harris. It’s an unlikely friendship when you consider that Sarah lives in Virginia, Kathy in Maryland, and I live in Missouri. Our friendship is never diminished from spending time away and when we meet at the Forum, we haven’t missed a beat. The Forum is like a special homecoming of the heart.

We all lost our husbands to an Alzheimer’s type of dementia. We met at the Forum and had an immediate connection. Now, it would be hard to imagine my life without them.

These serendipitous friendships are promises that nothing is really random. No matter what happens, we will meet the people we are supposed to meet and fulfill the purpose we were born to accomplish.

“If it hadn’t been for Alzheimer’s,” Sarah said, “we would have never met.” This is an undeniable truth. Our adversities defined our strengths and shaped our souls allowing us to embrace our unlikely friendship.

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

Monday, March 30, 2015

Alzheimer’s Advocacy Forum 2015

I joined 1,100 other focused and dedicated advocates in Washington, D.C., to take our message to Capitol Hill. As always a highlight for me is to meet my long-term (fifteen years!) friends, and sisters of the heart, Sarah Harris and Kathy Siggins. This is the one time each year we get together, talking non-stop until we get caught up. Once we enter the forum, we’re focused on the message.  

As an ambassador, my first training session began immediately following lunch on Monday. The program began with an exercise. Everyone was asked to shout his or her name. Of course, the result was a loud, indecipherable noise. Yet when everyone whispered in unison “Alzheimer’s is the most expensive disease in America,” it was easily understood. This demonstrated the impact of everyone being on the same page and delivering the same message.

Our mission was for Alzheimer’s advocates to deliver our federal priorities to our senators and representatives.  

1.                  Increase the commitment to Alzheimer’s research by $300 million. The current level of investment is $586 million. Even with the increase, this amount is far short of the $2 billion annual estimate to implement the steps toward meeting the goal of a cure or effective treatment as set forth by the National Alzheimer’s Plan.
2.                  Co-sponsor the Hope for Alzheimer’s Act. During the Forum, the Act was re-introduced with a focus on care planning and documentation of medical records. This act is consistent with the National Alzheimer’s Plan
  
The cost of caring for individuals with Alzheimer’s is a staggering $226 billion. One in every five Medicare dollars are spent on people with Alzheimer’s disease. These numbers will only continue to increase as the baby boomers age. By 2050, the cost of Alzheimer’s care is expected to reach $1.1 trillion per year. The only way to avoid this pending economic crisis is to find an effective treatment or cure for Alzheimer’s disease.

Research today is exciting and we seem to be on the cusp of finding the key to unlock the elusive cure for Alzheimer’s. New studies have shown great promise. New technology allows scientist to see beta amyloid plaques and tau tangles in living brains. Now, the effectiveness of treatments can be measured through this imaging.

A breakout session on social media showed us how to use tools provided by the Association to share highlights of the session via social media—Twitter and Facebook. We participated in a “Thunderclap” that released hundreds of tweets and Facebook posts as we began our Hill visits. The Association also re-tweeted any tweets containing #ALZFORUM or #ENDALZ. During the National Alzheimer’s Dinner, tweets were displayed on the screens, including several of mine.

All fifty states were represented during the roll call of the states. The most poignant moment during the roll call was an advocate accompanied by his wife who had Alzheimer’s. My heart went out to both of them.

Dr. David Satcher, former U.S. Surgeon General presented the keynote. He focused on leadership and teamwork. He said, “everyone teaches and everyone learns.” Dr. Satcher  said, “Leadership is like a relay race.” It doesn’t just depend on how fast you run, but whether you have the baton at the finish line. “If you drop the baton, the race is over.” He read a poem his wife, Nola, had written for their wedding reception, “I’ve Never Been Here Before.” Nola was diagnosed with Alzheimer’s fifteen years ago giving a new meaning to the poem.   

Periodically, throughout the meeting, advocates and people with dementia would tell why they were advocates. The most delightful person to speak was Amy Shives. She said she was diagnosed at fifty, as was her mother, with dementia of the Alzheimer’s type—atypical. She never considered herself to be typical anyway. She said that people with Alzheimer’s did not like to be called “sufferers” because they are people, not the disease. “If you’ve met one person with Alzheimer’s; you’ve met one person with Alzheimer’s.” Amy said that now she could wear her new shoes even if it didn’t match her dress. Her first dog, Chester, alerts her when she is going to have seizures. She freely admitted that her cat doesn’t care. Her husband, George, is her care partner and she loves him more than ever. Amy is being considered for an appointment to next year’s Alzheimer’s Association Board of Directors.
  
Lisa Genova, author of Still Alice, received the Sargent and Eunice Shriver Profiles in Dignity Award. Lisa was at the 2008 Alzheimer’s Forum speaking to an early stage group and selling her self-published book. I bought a book from Lisa during that long-ago Forum prepared to be disappointed. Boy, was I ever wrong! I was so impressed by Still Alice that when a student I was mentoring wanted to know what book to review, I recommended Still Alice. The book was later published by Simon & Schuster and spent 40 weeks on the New York Times best seller list and sold 2.1 million copies in 30 different languages. The movie, starring Julianne Moore, has followed a circuitous route to become an acclaimed movie co-produced by  Elizabeth Gelfand Stearns, chair of the Judy Fund, who read the book in one night.

On Wednesday, we stormed Capitol Hill. Jessie Kwatamdia, Marcia Rauwerdink, and I along with other advocates visited Senator Blunt and Claire McCaskill’s offices. We three then visited with Congresswoman Hartzler, where we received a warm reception. After our visits, Jessie and I attended the Senate Hearing on the Fight Against Alzheimer’s, Senator Susan Collins, chair, and  Claire McCaskill, ranking member. Among those testifying was Missouri advocate Kim Stemley. Kim, a young caregiver for her mother, gave a powerful, on-point testimony.   

The influence of 1,100 dedicated advocates, wearing purple sashes, each delivering the same message, punctuated with personal stories, leaves a lasting impression on our legislators. Collectively, we are influential, but we are unstoppable as individuals who advocate throughout the year.

I am thankful to once again be part of this group and look forward to returning for my sixteenth Advocacy Forum April 4 – 6, 2016, to make sure our voices are not forgotten. 

Copyright © March 2015 by L.S. Fisher

http://earlyonset.blogspot

Saturday, March 21, 2015

Spring Into Action at the Alzheimer’s Forum

Spring is finally here and I’m packing for my fifteenth annual trip to Washington, D.C. It’s that time of year again when Alzheimer’s advocates converge on Capitol Hill to deliver our message to Congress.

For the first time in several years, I’ll be making the trip alone. My good friends Kathy and Sarah will be spending one night with me. We’ve never done that before and I can just imagine it will be a blast with not much sleeping going on.

With the way my flights are, my free time is broken up into smaller chunks so I’m not sure how many of the wonderful historic sites I’ll get to visit this time. Our hotel is in the Woodley Park area so we’re quite a distance from the Smithsonian’s other than the Zoo. Of course, an entrance to the metro is just a short distance away so I imagine that will be my direct route to the monuments and museums.

Of course, I’m not there to be a tourist. I’m there to take on the serious business of advocating for Alzheimer’s funding. Research news is really exciting right now.

Alzheimer’s is a global problem and researchers are working worldwide to find a cure. A new study from Australia has shown reversal of Alzheimer’s in animal models. Scientist used focused therapeutic ultrasound to beam noninvasive sound waves into the brain. This therapy worked on 75 percent of the mice, restoring memory, but not damaging surrounding tissue. That sounds totally awesome!

At least it’s awesome for the mice, but folks, it makes you wonder how long it will be before it becomes available for our loved ones. This therapy is slotted to be tried on “higher” animal models, such as sheep. Human trials could be underway as soon as 2017. These trials may start small, and perhaps in Australia.

It’s not surprising that this news comes from Australia. In 2004, they were the first country to adopt a national Alzheimer’s plan. USA adopted a plan in 2012.

Scientists are exploring several avenues now that show good results in mice ranging from a special diet to drugs that restore the immune system to normal so it can rid the brain of beta-amyloid plaque.

Research is costly which brings me back to the reason to go to D.C. Our country is hard hit with Alzheimer’s disease which happens to be the most costly disease in America. Yet, we spend only 1% of the cost of the disease on research. We need to increase the investment in Alzheimer’s research to meet our goal of a cure or effective treatment by 2025.

So my bag is packed and I leave early, early in the morning to make my flight. This time tomorrow, I’ll be in D.C. preparing for a whirlwind of preparation for our Hill visits on Wednesday. We will spring into action and shout from the Hill: We want to End Alzheimer’s Now.

Copyright © March 2015 by L.S. Fisher

http://earlyonset.blogspot