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.  

The first training session for ambassadors 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 is 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 scientists 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 they don’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 Alzheimer's book to review, I recommended Still Alice. The book was later published by Simon & Schuster and spent 40 weeks on the New York Times bestseller 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. Missouri advocate Kim Stemley, 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

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 sites 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 will eventually 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. We didn’t adopt our plan until eight years later.

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 in order 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

Alzheimer's Everywhere I go

Last weekend, I had the privilege of speaking at the Business Women of Missouri legislative conference on Alzheimer’s legislation. A women’s group is an ideal audience for a topic of Alzheimer’s. Two-thirds of those stricken with the disease are women. In addition, women are two times more likely to be the caregiver for a loved one with the disease.

Spouses and daughters make up the majority of the female care partners, but in younger onset, a mother may be a caregiver. In Jim’s case, his mom took care of him while I worked. Her failing health and the progression of the disease left me scrambling for other relatives and professional caregivers. Bless my mom, sister, sons, and in-laws for being the village that helped me keep him at home longer.

It seems that everywhere I go, I run into others who know the heartbreak of Alzheimer’s. Folks tend to share their experiences with me. Or their concerns. Often, I see the concern when the horrible suspicion takes hold that something is terribly wrong with a loved one. From my experience, I completely understand the urgency of wanting to find out what is wrong, and the fear that the doctor will say, “dementia” or “dementia of the Alzheimer’s type.”

First, before panic sets in, take your loved one for a complete medical and psychological workup. I believe that nothing would have been more devastating to me than to find out, too late, that something could have been done to help Jim, and we hadn’t started proper treatment. Some treatable conditions can mimic Alzheimer’s.

Also, psychological testing can measure the level of cognition. I was stunned to learn that Jim had dementia after a battery of psychological testing. Simple things baffled him: he couldn’t count backwards from ten, he couldn’t come up with any words that started with the letter a, and he couldn’t perform simple math. Abstract thinking was beyond his capabilities.

Jim’s follow-up MRI detected brain shrinkage. We ran out of other reasons for his problems.

Alzheimer’s is an insidious disease. It sabotages lives and steals the future. It predictably moves throughout the brain, relentlessly destroying brain cells.

Caregivers can become frustrated when they hear the same question or phrase, repeatedly. They can become annoyed with repetitive behavior. Jim folded paper towels, dozens of them, and stuffed them into his pockets. He paced. And paced. And paced right out the door and down the road.

“It’s just the disease,” I told myself. I told others the same thing when they couldn’t understand why Jim did some of the things he did. Knowing it’s the disease, does help.

“If Jim had a broken leg, would people expect him to walk?” my mom reasoned. “Well, he has a broken brain, and no one can expect him to do the things he used to do.”

When Jim was in the early stages of the disease, I think some people believed I was the problem. I saw little things, subtle changes that it took another year for others to see.

Now I see others beginning that journey, hoping it isn’t Alzheimer’s. They notice differences that may not be obvious to anyone else.

I don’t know how many times I’ve heard, “Oh, my uncle doesn’t have Alzheimer’s! He can remember everything that happened when he was a boy.”

Yes. We grasp at straws and hang onto denial for as long as possible. If he can’t remember where the bathroom is in his own house, or drives to town and can’t find his way home, or forgets his children’s names, it’s time to drop the denial and investigate.

We fear nothing as much as the unknown. And everywhere I go, I find people who begin to have that nagging doubt that gnaws at the pit of their stomachs, that someone they love is developing dementia. My heart aches for each of them. My prayers plead for them to be strong, because strong is the only choice if their fears become the ugly reality of Alzheimer’s.

My hugs convey my hope that until science ends Alzheimer’s they will make the most of the time they’ve been given. My dream is that someday, everywhere I go, I won’t know anybody with Alzheimer’s.

Copyright © March 2015 by L.S. Fisher

http://earlyonset.blogspot.com

A Box of Memories

Last week I opened a box of photos and found a hodgepodge of  memories packed inside. I had stashed miscellaneous photos in this box and the memories spanned decades—many decades.

I started sorting the loose photos into labeled envelopes with hopes that eventually I could find a specific photo when I wanted. I began the task of labeling photos and trying to date them. Some were still in the envelopes from the various places where I had them developed. Although I didn’t take the time to label the photos, I often put the place and year on the outside. As I shuffled through them, I was reminded of happy times, family reunions, vacations, and get-togethers.

I was searching for a photo for an Alzheimer’s presentation I’m giving this weekend, and in addition to the box, I sifted through thousands of photos on my computer. I was amazed at how many of the digital photos I didn’t remember taking.

I’ve finally started organizing my digital photos by putting them in folders by subject and by year. It does make it easier to find that one photo I’m looking for to jog a memory, savor a moment, or for a brief wallow in nostalgia.

As I’ve gotten older, I’ve discovered how important it is to have these mementos. Too many people are gone before we’re ready. Too often family moves across country, and our paths won’t cross for years or decades at a time. Or maybe we won’t meet again on this side of heaven.

Rare old photographs are meant to be enjoyed and shared. Poor families have fewer photos than wealthier ones. You not only had to buy a camera, you had to purchase film, and then pay to have it developed. Sometimes the process took months if you hadn’t taken the entire roll of film. Or, you’d put it aside and forgot to have the photos developed. When that happened, photos often had a strange cast to them. It seemed like in every group photo at least one person was looking away, talking, or had her eyes shut.

I know my mother-in-law lost a lot of her family photos in a fire. Those irreplaceable images are gone forever.

What a different world it was then. My hairdresser and I were talking about the numerous “selfies” people take today. She was wondering why her daughter had to have so many pictures of herself.

Well, let’s face it. The younger you are, the better the photos turn out. At my age, I prefer to have my hair fixed and my makeup on. It doesn’t help to be dressed in something that makes me look like a baby elephant. It’s hard to look trim in photos when you aren’t in real life. But let’s face it—there’s good photos and not so good ones.

This morning when I was organizing some of my digital photos, I saw one Harold took of me with my new camera. I didn’t have a speck of makeup on, and in high quality digital, you can see every flaw on my face. I almost deleted it, and then decided what the heck, it wouldn’t look bad at all with a little Photoshop magic.

It is so easy to scan or take a photograph and share within seconds on Facebook. As I’ve uncovered some of the treasures in the box of pictures, my first thought was to share them with family members. I love looking at old photos others share on “Throwback Thursday.” The photos make me smile—sometimes through tears—but a big smile, just the same.

I’m so glad that I have thousands of digital and prints of people, places, and memories. Photos are slices of life—precious moments frozen in time.

Copyright © March 2015 by L.S. Fisher

http://earlyonset.blogspot.com