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

Friday, March 13, 2015

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 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. Noticing those 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

Thursday, March 5, 2015

A Box of Memories

Last week I opened a box of photos and found a hodgepodge of  memories packed inside. I had stashed a lot of 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, get-togethers.

Not only did I open a box of photos, I was searching for a photo for an Alzheimer’s presentation I’m giving this weekend and found myself sifting 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 them 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 they 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 that 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 doesn’t make 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, 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. Moments frozen in time.

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

Monday, February 23, 2015

Memory Day Common Sense Proposals

Rep. Dean Dohrman, Linda Fisher, Ginger Dollinger
On a cold February morning, Ginger and I joined other Missouri advocates for Memory Day at the state Capitol. With the temperatures in the teens and wind chills below zero, we made the trek from the parking garage to the Capitol building basement. That was a great place to enter the building since the cafeteria was close by and a hot cup of coffee helped take off the chill.

I found my cousin, Karen, and her lobbying partner at what they called their “office.” This was a perfect area to see everyone that entered the building. Ginger and I joined them and while we enjoyed our coffee, we received our first lucky break of the day. My cousin had a place for us to leave our coats. How great to not have to lug them around.

“Usually when we get here,” I told her, “we have this big discussion as to whether it’s cold enough that we have to wear our coats. That wasn’t an option this morning.”

Soon, the Alzheimer’s group passed by, and we discovered that we were now meeting in Hearing
Ginger Dollinger
Room #2, instead of #3. We would meet to receive our appointment schedules, leave behind packets, instructions, and don our purple sashes. Our Springfield group was unable to come because of ice, so our group was smaller than usual.

The Memory Day ceremony had been moved to 2:00 p.m., so for the first time, we had lunch first. Better yet, we weren’t rushed!

Another first: Ginger and I had different representatives. Since I’ve moved a few miles down the road, that puts me in a different district.

We had two important issues to discuss with our legislators.

Alzheimer’s Grants. We have been fortunate to received Alzheimer’s service grants for many years. This year we asked for $450,000 to be budgeted for grants that provide respite care for Missourians with Alzheimer’s or a related dementia. This grant has the potential to save the state millions each year. How is that possible? Respite often helps caregivers keep loved ones at home longer. Eight hundred families receive respite from this grant. Nursing home care costs Medicaid (paid by the state) an average of $147 per day. When you consider that 60% of nursing home residents are on Medicate, if respite delays nursing home placement by one month (30 days) the state would save $2,116,800. The savings alone makes sense! I delayed nursing home placement by several months with in-home care partially paid with respite funds. It is impossible to place a value on how much that time meant to us.

Senior Savings Protection Act (SB 244/HB 636). We all know how on our toes we have to be to avoid being scammed. People with dementia are even more vulnerable to being exploited. This bill would allow financial industry professionals to reach out to state agencies and family members if they suspect senior clients are being exploited and to refuse disbursements up to ten days. Folks, this is so necessary! Jim had me to run interference for him when telemarketers and others tried to take advantage of him. Not everyone has a person who can keep track of all the unscrupulous shysters out there that would love nothing better than to tap someone’s bank account.

Linda, Ginger, and Rep. Dave Muntzel
Our first scheduled visit was to see Ginger’s representative, Rep. Dave Muntzel, who until August had been mine. After our visit with him, we went directly to visit Rep. Dean Dohrman, my representative. Both representatives seemed to understand the value of both respite funds and the senior protection bill.

After these visits, we split up. Ginger went to the ceremony, and I accompanied an advocate who was meeting with his representative. As soon as our meeting ended, we walked to the second floor rotunda area where Lt. Governor Peter Kinder was talking about Alzheimer’s impact on families and government. Advocates held flowers representing their connection to the disease. The program ended with a caregiver’s personal story.

I dropped off a packet for our senator and retrieved our coats. On the drive back to Sedalia, Ginger and I talked about the day, our impressions, our hopes and fears. It had been a tiring day, but productive.

Being an advocate means being a voice. Each of us can be a voice to help advance these important issues in Missouri. Face-to-face meetings make the most difference, but you can lend your support with a letter, phone call, or email. It just takes a moment, but approval of the $450,000 Alzheimer’s Grant could be a lifeline for someone you love and save the state millions at the same time. The Senior Savings Protection Act could help your grandparents or elderly parents keep their hard earned savings. Supporting these two issues are a win-win for Missouri residents and tax payers.

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

Friday, February 13, 2015

Alzheimer’s: The Triple Threat

Alzheimer’s disease is a looming threat to each of us and to our government. In fact, it is a triple threat.

Threat #1: Soaring prevalence. Every 67 seconds a person in the United States develops Alzheimer’s. More than five million Americans currently are living with Alzheimer’s. As the baby boomers age the prevalence of Alzheimer’s will skyrocket. Left unchecked, we could be looking at 16 million people with the disease by 2050. Don’t know about you, but that darn near scares the bejesus out of me.

Threat #2: Lack of Treatment. Alzheimer’s is the sixth leading cause of death in the United States. It is the only disease in the top ten without an effective treatment or a cure. We seem to be headed in the right direction with the Alzheimer’s Accountability Act which means the research budget is scientist driven. The goal is to move toward the National Alzheimer’s Plan with its goal of finding an effective treatment or a cure by 2025. Some recent studies are promising!

Threat #3: Enormous Costs. Alzheimer’s has a reputation for being the most expensive disease for a reason. It is! The cost to Medicaid is $37 billion and Medicare is $113 billion, or one in five Medicare dollars. I can’t quite wrap my mind around those staggering numbers. Families provide an estimated 17.7 billion hours of unpaid care. In 2014, the out of pocket expense to American families to care for loved ones with Alzheimer’s is estimated to be $36 billion. Additional costs hit family budgets hard. Even with health insurance and a division of assets that meant Medicaid picked up part of Jim’s nursing home, the disease drained our resources. Jim’s Veteran’s check and social security check went to the nursing home. I bought a lot of extras for him, much more than the $25 a month allowance from his checks.

When faced with a threat, humans have an instinct of either “flight” or “fight.” Which do you have? If you fall into the “flight” camp, you just ignore the disease and figure that it isn’t going to happen to you or someone you love. You don’t bother to do anything about it. Maybe not because you don’t care, but you just don’t have time, or money, or motivation.

If you are like me you plan to “fight” with all you have. You walk the walk and talk the talk. You participate in Walk to End Alzheimer’s, or at least support someone who does, and you become an advocate. You spread the word, email a legislator from time to time. You become a Voice for Alzheimer’s.

Last night during the “Changing the Trajectory of Alzheimer’s Disease” call they mentioned three ways to help us move the Alzheimer’s mission forward. They called them the three “F’s.”

First, we need Fighters! These are the Champions who visit, email, call, and generally pester their legislators about Alzheimer’s legislation. They are ambassadors, board members, and volunteers who faithfully give their time and resources.

Second, we need Faces. A personal story, a picture, or a person in front of a legislator takes the abstract and makes it a reality! Whether you are visiting your state or U.S. legislators, the most important thing you can bring as an advocate is your story to make it personal and real. You need to condense the story to keep it on point and brief, but tell it from the heart.

The third part is to share the Facts. The facts are scary! The facts are sobering. You don’t have to memorize the facts, but you need to share them. The best way to lay out the facts is to verbalize a few key facts and leave a handout behind with the details.

We have our work cut out for us if we intend to neutralize the triple threat of Alzheimer’s and change the trajectory of the disease. I hope you choose to join the fight.

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

Sunday, February 8, 2015

Live Until You Die


Recently Harold and I went on a fifteen day cruise to Hawaii with my brother, his wife, my sister, and her husband. While at our last port, Kona, my brother said, “I saw something today that I’ve never seen before on a cruise.” Since he is the most seasoned “cruiser” in our family, this statement surprised me.

“I saw them load a body on the boat this morning.” He went on to say a hearse came to the pier and picked up the body.

“At least he was living when he died,” my sister-in-law said. “It’s a heck of a lot better than laying around in a nursing home waiting to die.”

This made me think about something my mother said several years ago after Jim developed dementia. She said, “I’m sure glad that you and Jim didn’t put off traveling until retirement.” So was I, since retirement was never meant to be for us. Travel, we did! Mostly we traveled west—to Oregon, Colorado, Utah, Idaho, New Mexico. In addition, we expanded our journeys by going south, north, and east—sometimes vacations and, other times, on business trips.

The important thing is that we lived. Jim always said planning a trip gave him “something to look forward to.” His lifestyle growing up was that of a vagabond. Getting in the car and heading out to a new territory meant adventure. A new day, a new experience. When the Fisher family returned to a locale, it was a sense of returning “home” to reunite with friends, family, or the weeping willow tree that grew in the front yard of a house they once lived in. Either way he was happy. He was living. He had many “homes” that resided in his memory and heart.

I, on the other hand, grew up living in one house in a remote area of the Missouri Ozarks. Travel was not something we did. Until my senior trip, I had only been out of state one time.

Other than the difference in our traveling experience, Jim and I had a lot in common. We both came from big families without a lot of material possessions, parents that remained married until death, relatives that played guitars and sang country music, and a love of family. We both grew up with cousins as our best friends and playmates.

Eventually, we found our groove—living in one area to satisfy me, but traveling to satisfy Jim. Even after Jim was diagnosed with dementia and traveling became a different kind of adventure, we still managed to revisit the familiar, Colorado and Branson, and to experience new locales—Maine and Nova Scotia. We continued to live.

If there’s one thing I’ve figured out from our journey into dementia, it is that living is a choice. When you consider the long-term scope of the disease, the choice to make the best of the time remaining seems more important than ever.

Don’t waste the time you are given in the early stages of the disease. As the disease progresses, adapt. An adventure may be as simple as a trip to the park or Dairy Queen for a milkshake or taking a wheelchair for a spin around the parking lot.

I can’t think of many things that is more heart-wrenching than watching a loved one’s emotions, memories, and skills deteriorate, but the one thing you have is the gift of time. Although it may seem that time is not your friend when you reach the later stages, it is a gift that people often do not have. Clutch and cherish those moments. Choose to live until you die.

Copyright © February 2015 by L.S. Fisher

Tuesday, January 13, 2015

UPDATE: January 15 is Last Day to Vote in Best Health Blog Contest!

Healthline interviewed me for their Facebook page. Here is that interview:

Read about why Linda is participating in the Best Health Blog contest:
1) What inspired you to start blogging?

My husband, Jim, developed dementia at 49 years old. After a series of tests, the doctor told us that Jim had dementia of the Alzheimer's type. I knew nothing about Alzheimer's so my first reaction was, "Isn't there medicine for that?" That was the beginning of the journey where we learned that nothing would slow down the progression of the disease and that it was 100% fatal. Jim died in 2005, ten years after the diagnosis.
I reached out to the Alzheimer's Association before we had a diagnosis, and they became my lifeline. I called myself the Alzheimer's Association poster child because I took advantage of every program and service they offered. I became an Alzheimer's volunteer and advocate as a way of giving back to the Association and extending a helping hand to others who were becoming acquainted with the harsh reality of dementia.
2) What would you do with the money if you won?

I would use the money to help pay expenses to the Alzheimer's Advocacy Forum in Washington, D.C. in March. I'm already registered for the 2015 Forum--my fifteenth consecutive trip to advocate for Alzheimer's research and programs to help care partners cope. Each year, I join hundreds of other advocates as we don our purple "beauty queen" sashes and storm Capitol Hill.
3) What has been your best blogging moment?

My best blogging moment(s) are when someone tells me they have learned something helpful or found encouragement from one of my posts. I think my most thrilling moment was when the national Alzheimer's Association featured a story about Jim and me in their online newsletter with a link to my blog. That was the first time that more than 100 people visited my blog in one day.


Saturday, January 10, 2015

Has Stanford Found a Cure for Alzheimer’s?

It is with optimistic caution that I share the latest good news regarding Alzheimer’s research from Stanford University. They may have found the elusive and overdue cure for Alzheimer’s disease. Over the past fifteen years, I’ve heard exciting news about Alzheimer’s research that fizzled out after sailing through preliminary testing.

Is the Stanford University research going to be exception to past experience? I hope so!

I’ve always heard that you can’t keep doing the same thing and expect a different outcome. That is one reason that grants are often awarded to researchers who try a new approach to the same problem—What causes Alzheimer’s and how can it be cured?

The hallmarks of Alzheimer’s disease are deposits of beta-amyloid plaques between nerve cells and tangles of the protein tau that build up inside cells. Aging is the number one risk factor for developing the disease, but it is not a normal part of aging. Alzheimer’s is a destructive and always fatal brain disease, currently the sixth leading cause of death in the United States. Alzheimer’s relentlessly progresses from mild symptoms to the final stages requiring constant care. People with the disease live an average of eight years, but some live twenty years or longer.

Stanford’s approach is to boost the brains’ own immune response to prevent and cure Alzheimer’s. Researchers at Stanford University School of Medicine discovered that by blocking the protein EP2, microglia cells will continue to cleanse the brain of dangerous beta-amyloid deposits.

“The microglia are supposed to be, from the get-go, constantly clearing amyloid-beta, as well as keeping a lid on inflammation,” Dr. Katrin Andreasson, professor of neurology and neurological sciences at Stanford, said.

Microglia cells are your own personal defense system. Their function is to search and destroy dead cells and other debris in the brain such as the gummy deposits Alzheimer’s disease leaves in the wake of its destructive path.

Experiments on mice have been encouraging. Microglia goes about its business of protecting the brains of young mice. In older mice, the presence of EP2 proteins stopped the microglia cells from doing their job of destroying the dead cells. Another group of mice were genetically engineered to never develop EP2, and even when injected with beta-amyloid did not develop Alzheimer’s. Even more exciting news for people with Alzheimer’s—blocking EP2 in older mice reversed the memory loss!

Of course, a great distance separates animal testing and drug development. Stanford has hopes of developing a drug to block EP2. They believe a compound that only blocks EP2 would not have unnecessary side effects.

Have researchers finally found the key to unlock the mystery of Alzheimer’s disease? Time will tell if the Stanford study is the long-awaited breakthrough and the end of Alzheimer’s.


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