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

Wednesday, January 7, 2015

Baby It’s Cold Outside

According to my phone this morning the temperature was hovering at a balmy nine degrees and a cyclonic wind pushed the “real feel” way below zero. My last therapy appointment was today at 11:00 a.m. I dreaded going outside and would have loved to burrow under the covers and drink coffee. But, dang, I couldn’t miss my last appointment.

At least I was geared up for it to be my last one. I was a little concerned since Monday as I entered the school to watch my granddaughter play basketball, I tripped on the threshold. My right shoe came off and I landed splat on the floor a short nanosecond later. Holy cow, to add insult to injury, I landed on the very arm I had been working on in therapy.

After the initial pain and agony, I spent some quality hours on a heat pad. I downed some ibuprofen and didn’t feel too bad on Tuesday, my day off from therapy. By this morning, I was ready to give it a whirl.

Which brings me back to the weather. I layered my clothing and put on my heaviest coat before I headed out the door. When I got to Peak Performance the parking lot was much emptier than I’d ever seen it. Sure enough, they had a lot of cancellations. After my therapy, I headed for home. It was too darned cold to do anything else.

Cold weathers seems to breed misery. There’s nothing that says “Big Chill” like frozen water pipes or a car that won’t start. I remember the days when we drove an old vehicle, and Jim would get up every few hours to start it up so that we would be able to go to work.

Every summer we complain about how hot it is outside, but when winter hits, we decide that the heat of summer wasn’t so bad after all. There’s nothing like getting hit with an icy north wind to make you long for the dog days of summer.

This frigid winter weather can be hazardous to life and limb. The weather advisory on my phone warned of frostbite and hypothermia. During a cold snap in November, two homeless men died in our town. I can’t even imagine how frightening it would be to be homeless when wind chills are expected to be twenty below zero.

These type of temperatures are also dangerous for people with dementia. Seventy percent of people with dementia wander. While this is a concern in decent weather, severely cold weather presents a real and imminent danger. Even dressed for the weather, time outside must be limited. Too often people with dementia wander off without a coat, hat, and gloves.

Cold weather isn’t too bad in a well insulated house. I remember when we lived in a mobile home water froze overnight in a cup I had left in the sink. We’d crank the heat up as high as it would go, but the furnace couldn’t compete with the wind whistling around poorly installed windows and doors.

I feel for people who live in older homes that are not well insulated. Another time we lived in an older home and the propane lines froze up. We sent the kids to their grandma and grandpa’s house while we tried to get the furnace working again and keep the water from freezing. I remember us huddling under a blanket using a hair dryer to generate heat. If that happened now, I’d probably just check into a hotel until the spring thaw.

I shouldn’t complain too much about the cold while I’m warm and cozy. I know that not everyone can keep warm in this type of weather and that bothers me.

Yes, baby, it’s cold outside, but better days are coming. I guess the cheery thought is—spring is only seventy-one days away.


Copyright © January 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Saturday, January 3, 2015

A New Year’s Revolution to End Alzheimer’s

This is the beginning of a new year, and I think it’s time that we organize a revolution against Alzheimer’s disease. The National Alzheimer’s Plan is to find a prevention or effective cure for Alzheimer’s by 2025. When I woke up this morning, I realized that is exactly 10 years from now!

Ten years may seem like a long time, but it isn’t. It takes an average of 12 years for a drug to traverse the path from research lab to the patient. Ninety percent of the drugs in preclinical testing are never tested on humans. Of the ones that make it to human testing only one in five will ever be approved.

So what can you do to join the revolution? Assuming you are not a researcher, your efforts can be focused in a different way. You can join the battle to End Alzheimer’s!

  1. Contact your legislators. Write letters, make phone calls, send emails, or visit them in district or D.C. The government funnels research dollars through the National Institutes of Health (NIH).  NIH annually submits a budget request which after modification is submitted to Congress from the President. Alzheimer’s research is underfunded at $480 million. In June, thanks to advocacy efforts, an additional $100 million was added to the NIH budget. To put this in perspective, NIH spends $6 billion (with a B) on cancer research, $4 billion on heart disease, and $3 billion on HIV/AIDS research annually. Researchers use grants to develop treatments. Do the math.
  2. Participate in Walk to End Alzheimer’s. More than 450,000 participants in 600 Walks nationwide raised awareness and funds for Alzheimer’s care, support, and research. The Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s research  and the world’s leading voluntary health organization for Alzheimer’s care.
  3. Contact your local chapter. The Alzheimer’s Association has 70 chapters that serve communities across the United States. Chapters are the front lines in the battle against Alzheimer’s. They will help you find the resources you need to navigate through the quagmire of living with Alzheimer’s.
  4. Arm yourself! No one goes into battle without equipment, ammunition, and a plan. To prepare yourself, acquire knowledge about the disease and develop a plan that will provide quality of life for the person with the disease and the care partner. Learn how to communicate and alleviate the stress caused by behavior.
  5. Build a support system. Surround yourself with friends, family, and loved ones who will support you. You need people that will be on your side even when the going gets rough. Build a medical team for the person with dementia and the care partner—primary physician, neurologist, and specialists in any other illnesses such as diabetes, heart disease, cancer.
  6. Keep a log of all medical information. Use pen and paper, a document, spreadsheet—whatever works for you—detailing all treatments, medications, side effects, tests. This will help you fill out medical forms and avoid unnecessary tests or medications that caused side effects.
  7. Enjoy life! Watch for moments of joy and don’t stop living. Don’t place everything on hold. Alzheimer’s is a disease that can last for decades. Learn to adapt to each stage and pursue activities that put a smile on your face. Love and patience overcome a lot of barriers.

More than five million people in the United States currently have Alzheimer’s disease and new cases are skyrocketing.  Alzheimer’s is the sixth leading cause of death and the only disease in the top ten without an effective treatment or cure. No cure. A hundred percent fatal.

Where is the outcry? The outrage? This country has never been one to sit on its hands and let a disease wipe out millions of people—but that is exactly what is happening with Alzheimer’s.

That is why it’s time for a revolution. This disease and related dementias—vascular dementia, Lewy body dementia, Frontotemporal degeneration, mixed dementia, Parkinson’s, Creutzfeldt-Jakob, normal pressure hydrocephalus, the rare dementias (including corticobasal degeneration)—has to stop. NOW.  It is time to arm ourselves with passion and knowledge to  eradicate Alzheimer’s disease once and for all. Won’t you become an advocate and join the fight to End Alzheimer’s?


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

Monday, December 29, 2014

The Broken Road

Broken Road - Photo by Jimmy Capps
As another year winds down, I find myself reflecting on the past year, and the years before that, and how I’ve arrived at this time and place. Have you ever stopped to ponder the small events  that shape our entire lives? The positive influences: a chance meeting, an unusual connection, making the right choice, joy, success, birth, and random acts of kindness. Life isn’t all smooth traveling. We have negative forces at work: accidents, disease, heartbreak, betrayal, deceit, failure, and death.

Everything that happens in life shapes who we are. The choices we make determine the quality of our very existence.

This year the broken road has climbed some high peaks and traversed through some deep valleys. I’ve lost loved ones this year. Most recently a cousin to a lingering illness, a niece to an unexpected death, and today my sister-in-law’s mother died from Alzheimer’s disease.

Life is tainted with a special type of sadness when a loved one is afflicted with dementia. Even with our small successes in Alzheimer’s legislation, this awful disease is still without a cure or effective treatment.

Alzheimer’s changed the course of my life. It took away the man I’d shared my life with, changed the color of the sky, and the taste of the air. It left a hole in my universe. Snapped away all my plans and dreams and left me with a different destiny.

It’s hard to believe that Jim died nearly ten years ago. I’m still sorting through a lifetime of mementos, and my heart breaks when I find one of Jim’s favorite shirts, a guitar pick, an old pair of glasses, an outdated drivers license—things that he once touched, used, or cherished. Old pictures memorialize slices of our lives, and stacks of videotapes provide a record of vacations, jam sessions, or a mundane day with a conversation long forgotten. The loss ambushes me from time to time.

But just like others who lost loved ones, I found more strength than I ever suspected lurked within me. Basically, when life crumbles, you have two choices: quit or move on. I like to say that I’m not a quitter so the second choice was a natural one for me. I conquer another piece of the broken road. Life goes on and life can be so good, sweet with many more smiles than tears.   

I had some major life changes this year—retirement, marriage, living in a different home, publishing two books, and watching time blur by and recede into the past. I have much to be thankful for as most of my family keeps on keeping on without missing too many beats.

When I think about life and all the “stuff” I’ve accumulated—toys, possessions, collections—it becomes clear that the important things in life can’t be bought. It is the intangibles that make life worth living: attitude, love, happiness, faith, hope, family, health…

To move forward in life, I can’t keep looking back at what once was, but must anticipate what is yet to be. After all, everything that happened along the broken road is imbedded in my memories, and seeped into my DNA. I’m comfortable with who I am and where I am at this stage of my life.

Today at the post office I saw a former co-worker. In fact, he was picking up the company mail. “Looks like retirement suits you,” he said.

“I love it!” I agreed. There’s something totally liberating about choosing what to do and when to do it. Oh, sure, I still have commitments and appointments that I keep, but most of my day is what I choose it to be.

“What are your plans for today,” Harold often asks me when we first wake up. He is a planner, I’m a seat of the pants type of person.

“I plan to drink this cup of coffee,” I say.

“Then what?”

“Drink another cup.” One thing I know—until I’ve had my coffee, I don’t want to think about the day beyond this moment, much less plan it. Besides, instead of spending time and energy to make plans, I’d rather be moving on down the road toward my destiny.


copyright © Dec 2014 by L.S. Fisher
http://earlyonset.blogspot.com