Monday, September 30, 2013

That’s History

When a day is done, whether good or bad, it immediately becomes history. One of the things about history is that you can’t go back and change it; nor can you go back and relive it.

As far as history goes, we all learn important dates in school. In fact we learn more dates than we can ever remember. Sometimes our teachers help us devise tricks to remember and with a little rhyme, we might always remember a date. “In fourteen hundred ninety-two, Columbus sailed the ocean blue.” How could I ever forget that date?

That’s history class. I always enjoyed history, outside of the date thingy. History is stories...important stories...about events that shape us now, although most school kids think history is boring. The reason it is boring to kids is because the rich stories of the past are reduced to facts and dates, and some of those are presented in a biased and controversial manner. It is interesting to hear that sometimes important events are skipped in the history that children are taught today.

Each of us has a personal history with dates that stick in our minds to be re-examined annually. We have birth dates, death dates, anniversaries, graduations, and a myriad of other events not only to mark time, but also to remember. Is it any wonder that with all these dates stuck in our heads, buried deep inside our brains, that we sometimes forget an appointment or a loved one’s birthday?

Today’s date takes me back to a day twenty-three years ago when I saw my dad leave this world. It was on the anniversary of his own dad’s death. I called my mom tonight and we talked about a lot of things before she brought up the date. I knew it was on our minds from the first “hello.”

Our brains are so complex that we can’t even comprehend all that goes on between our ears. I can’t visualize how many a billion is whether I’m talking about dollars or nerve cells in my brain. Understanding my brain would be a lot like understanding how I can write words on a keyboard and have this computer take those words and allow me to put them on the Internet where anyone can read them. Perhaps, as perplexing is to comprehend how anyone can totally understands how that process actually works.

Historical facts we learned, and our own personal history, is stored in our brains. We have much more stored in our brains than we can ever retrieve. If you are like me, you know it’s there, but can’t retrieve it at the moment you want it. For instance, if you are playing a game of Trivial Pursuit and you know the answer, but can’t remember what it is until immediately after the time is up. Worse yet, you need to know an important piece of information and instead of remembering it at the crucial time, you remember it in the middle of the night.

Memory and history are two parts of the same thing. When two people share a history, and Alzheimer’s subtracts that connection, it is a loss for both. Our page in history is our life story, and we want that story to be action packed, suspenseful, and with a glorious ending. With personal history, the dates are not nearly as important as the stories. The only test in life, is a test of self.

Copyright (c) September 2013 by L.S. Fisher

Saturday, September 21, 2013

NIH & NIA Fulfill $45 Million Pledge

Earlier this week, Dr. Francis Collins, director of the National Institutes of Health (NIH) fulfilled his promise to Alzheimer’s advocates to designate $40 million from his 2013 budget for Alzheimer’s research. I was one of more than 700 advocates at the Alzheimer’s Association Advocacy Forum, where Dr. Collins made the announcement that he was taking this unique step to show the NIH’s commitment to finding a cure for a disease that has baffled scientists for decades.

During his keynote address on April 23 at the forum, Dr. Collins said, “I so wish it could be more, but I hope you hear in this kind of a commitment the way in which we at NIH see this as an opportunity and responsibility. We also hope that moving forward we can put medical research back on the stable track that is needed in order to support the research and the researchers.”

The story in last week’s New York Times and USA Today both report that an additional $5 million has been designated by the National Institute on Aging (NIA) to provide support for innovative clinical trials.

Among the trials being supported through these additional funds is the Dominantly Inherited Alzheimer’s Network Trials Unit (DIAN-TU) trial at Washington University, St. Louis. Dr. Randy Bateman is the team leader. I met Dr. Bateman several years ago when he accompanied Missouri advocates on our visits with our legislators at the Alzheimer’s Forum in Washington, D.C. Hearing firsthand the possibilities of research to find therapies or a cure for early onset Alzheimer’s is encouraging in a way that reading about it cannot touch. Dr. Bateman is passionate about his work, confident, and optimistic that a cure can be found for the hereditary form of Alzheimer’s that can strike during early adulthood.

The APOE4 trials being conducted by Drs. Eric Reiman and Pierre Tariot at the Banner Alzheimer’s Institute in Phoenix will be fully funded in 2013. Several other trials are being funded to move them forward. An Allopregnaolone Regenerative Therapeutic study at the University of Southern California will evaluate the safety and tolerance of a natural brain steroid to treat Alzheimer’s disease. Other studies will analyze data collected from volunteers to identify promising therapies, test existing drugs currently used for other conditions for effective treatment of Alzheimer’s, and treatment based on targeting the immune system.

In a letter I received as an Alzheimer’s Ambassador, Alzheimer’s CEO Harry Johns said that the fulfillment of NIH’s pledge is historic. “In addition to fueling much needed research toward treatment, prevention, and ultimately a cure, it shows the growing recognition that our cause is receiving at the nation’s highest levels.” Johns praises hundreds of Ambassadors and hundreds of thousands of advocates for making the case in Washington, D.C., and in communities nationwide. In the Alzheimer’s Association news release, Johns said, “These studies are examples of the quality research in the pipeline that needs further funding in order to prevent and effectively treat Alzheimer’s disease by 2025 as outlined in the National Alzheimer’s Plan.”

Kudos to NIH and NIA for taking this first step toward prioritizing research for Alzheimer’s. Now, we need to keep pressing our legislators to take a proactive approach to finding a cure for this disease.

Alzheimer’s is an equal opportunity disease. It affects people without regard to race, religion, financial status, political party, intelligence, education, or any other classification you can think of. No human is immune to Alzheimer’s. It could happen to you or to someone you love if it hasn’t already.

It’s not a question of whether we can afford the research for Alzheimer’s, the real question iscan we afford not to fund research? Does it make sense to spend only $484 million on research that costs this country more than $140 billion annually in Medicare and Medicaid? Alzheimer’s is the sixth leading cause of death in the United States, yet the funding is minuscule when compared to research spent on other diseases which received billions annually to fund research.

Some of us have spent years advocating for Alzheimer’s research dollars. It can be frustrating when funding is stagnant, or worse yet, the years funding was cut. By hanging tough, advocates have fought for treatment equity for those living with Alzheimer’s and other dementias.

This is not the time to rest on our laurels, it is the time to step up our advocacy while the focus is on research. The ultimate goal is a world without Alzheimer’s, and it can be done.

Copyright (c) September 2013 by L.S. Fisher


Sunday, September 15, 2013

Wandering and Silver Alert Legislation

Jim wandered off many times after he developed Alzheimer’s. The first thing I learned as a caregiverwas immediate action was necessary to find him. I can’t count the number of times he disappeared. It only took a moment of inattention, or the misconception that someone else had eyes on him. Whether he disappeared mid-morning at a mall in Columbia, early afternoon at Silver Dollar City, late afternoon at the airport in Las Vegas, or from our home in the middle of the night, a search began immediately.

Unfortunately, wandering is a common problem for people with Alzheimer’s. Sixty percent of people with dementia will wander causing anxiety for the caregiver and creating a life threatening situation for the wanderer. Beginning the search immediately is key to finding your loved one safely. Statistics are on your side since ninety-four percent of the time they will be found within one and a half miles of where they disappeared.

You can take a few steps to help find your loved one. Alert neighbors of the situation and ask them to call you if they see your loved one walking alone. When searching, look in the direction of your loved one’s dominant hand—that is the direction they will usually go. Use Medic Alert+Alzheimer’s Association Safe Return or Comfort Zone (an electronic device). If you don’t immediately locate your loved one, call 911 and report them missing.

To ensure that when you call 911, the appropriate steps are taken to activate an immediate search, legislation should be in place. Legislation geared toward a Silver Alert should encompass all persons with dementia regardless of age. Jim had early onset dementia and would have been too young for the Silver Alert in states that identify only persons sixty-five or older with dementia. Missouri has an “Endangered Person Advisory” which could include anyone who may be in danger because of age, health, mental or physical disability, environment or weather conditions.

If you have a loved one with dementia, it is important to know the laws in your state and work toward legislation to make sure anyone with Alzheimer’s is included regardless of age. The law should also have provisions to activate the system based on a caregiver statement since many people wander before they have a formal diagnosis.

An important part of legislation is training for all emergency personnel. Proper training can make all the difference in finding the person with Alzheimer’s quickly using search techniques specifically tailored to persons with dementia. The immediate emphasis should be on a search of the local area. Quick and educated response is key to survival.

Silver Alerts are state programs designed specifically for vulnerable adults who have wandered. The search for adults is different than those used for AMBER alerts. AMBER alerts use statewide alerts which are not typically needed when searching for an adult wanderer. Also, since most wandering adults, like Jim, wander repeatedly, alerting everyone statewide each time an adult wanders could cause the public to become desensitized. This could do more harm than good by reducing the statewide response in cases where it is needed.

The goal is to find wanderers within twenty-four hours and reunite them with their families. The longer the person with dementia is gone, the chances of finding them unharmed is correspondingly diminished.

More than 125,000 search and rescue teams are activated each year to search for missing persons with dementia. This does not include the countless times that family members search for and find their loved ones. Kimberly Kelly with Project Far From Home estimates that as many as three million people with dementia wander away from home each year.

We were fortunate and Jim was always found quickly by either family, friends, neighbors, and during the mall disappearance, security guards. I was young enough to go searching for Jim, but not every vulnerable adult has a caregiver who can look for them. A system needs to be put in place, nationwide, that will activate an immediate search for vulnerable adults with a goal to provide safe return to their homes.

Copyright (c) September 2013 by L.S. Fisher


Tuesday, September 10, 2013

Walk to End Alzheimer’s 2013

We had a bright sunshiny, warm day for our 2013 Walk to End Alzheimer’s at the Missouri State Fairgrounds Saturday morning. I was there bright and early—6:30 a.m—along with other volunteers and members of the committee. Sheila and I played traffic cops as we directed placement of tables, conferring as to whether that table might work better here or there.

For once we didn’t have to worry about rain, but heat was a concern with temps expected to soar into the upper 90’s. At the last minute, while a volunteer was on his way to get more ice, we asked him to buy more water too. Walkers began to arrive and organized chaos took over as teams began to group together.

My sister-in-law, Ginger, started the cake walk, Kim and Bobby Brown manned the raffle table (which may have helped them rest up for awhile after bringing a trailer load of tables and chairs), Sheila grabbed the microphone and began to make announcements, registration tables were manned, and on my table, I arranged books to sign and give to walkers.

As I signed, I chatted with friends and family who came up to get a copy of Focus on the Positive. I also met new friends who came to the walk for the first time this year. As I was signing, a woman walked up wearing a shirt that said “Hellen’s Heroes.” I knew she was on the team honoring Hellen Cook, the woman with dementia whose body was found after nearly a month long search. Hellen was Darolyn’s mother, and she introduced me to her brother Mike. My heart went out to this family who lived through a caregiver’s worse nightmare. They have taken this tragedy and turned it into a positive by proposing “Hellen’s Law” to tighten up reporting an endangered missing person. I had my picture taken with member’s of Hellen’s Heroes and felt an instant connection with Darolyn.

Later as I was signing books, Linda Newkirk, executive director of the Greater Missouri Chapter, was explaining the significance of the pinwheel flowers and Jim’s Team held our purple flowers high to show that we had lost a loved one. Others held up orange, blue, and yellow flowers as their colors were explained. Shortly after, Sheila came to my table and told me I needed to go up to the front where Linda was speaking.

She finally dragged me away. When I got there, Linda was talking about Hellen Cook’s family and their advocacy. Then,Linda Newkirk, Executive Director of the Greater Missouri Chapter, announced that the chapter is placing a brick in their Garden of Hope in recognition of my volunteer work and advocacy. I am so honored! Even after all these years, I still feel the Chapter did more for me than I can ever do for them. They were my lifeline for ten years while Jim and I traveled the Alzheimer’s journey.

Sheila, my granddaughter, and I dropped our pinwheels into a bucket and took the lead as four hundred walkers began the walk. Instead of finishing the walk, we stopped and cheered others on as they came down the shaded walkway. We headed back to the Highway Gardens. Volunteers were planting the pinwheel flowers in the Promise Garden. The breeze turned the pinwheels and tears pricked my eyes to see the expressions of love.

I walked through the Promise Garden snapping photos and found the flower I had decorated for Jim. The breeze continued to turn the pinwheels nearby, but it was as if Jim’s flower stopped to pose for the photo. I snapped the photo, and the pinwheel resumed spinning.

Copyright (c) September 2013 by L.S. Fisher

Wednesday, September 4, 2013

Why I Walk to End Alzheimer's

Jim Fisher
Jim is the reason I walk in the Walk to End Alzheimer’s.

I think I loved him from the first day we met when his Uncle Orvie introduced us outside the Dew Drop Inn in Stover. It was by chance that Jim was in Missouri since he spent a lot of his growing up years in Oregon, Idaho, Utah, California... Jim loved to travel and we often went to Oregon to visit his relatives and childhood places. Later, we went to Estes Park and the Rocky Mountains annually.

Jim was a talented musician who loved to play his Fender guitar and sing country songs. I remember one time I taped him with our gigantic video camera singing “Colorado” while chipmunks and tourists stopped everything to just soak up the sunshine, clear mountain air and melody. Jim’s life was cut short when he developed dementia at forty-nine. He passed away in 2005 after ten years living with a disease that robbed him of his talents, sense of humor, and thoughtful conversation.

Jim lives in my memory and dreams, and I know that he is not forgotten by his family and friends. We need to stop this disease before more families go through the loss and pain of Alzheimer’s disease and other dementia. Walks are held across the country. If you can’t come to the September 7 Sedalia Walk. Join a walk near your hometown. Walk for Jim. Walk for your loved ones. Walk for more than 5 million Americans with this incurable progressive disease.

copyright (c) September 2013 by L.S. Fisher