Thundersnow

We knew the storm was coming and needed to plan accordingly. Although the amount of snow on the ground was deceptively light at 6:40 a.m., the time I usually leave for work, the forecast warned that this was just the beginning of a long day. I stayed home deciding I’d rather be snowed in than out. Having been caught in both situations, on my last year in the working world, I have no desire to put my car in a ditch.

I do believe the nearly foot of snow was more than expected. The snow fell at about an inch an hour, and to make it more interesting thunder rumbled. The thundersnow fell, fell, and fell. I started measuring with a ruler and the last time I sank it into the ground, a mere inch showed. Then it started sleeting.

The intense snowfall brought the world to a screeching halt as banks, shopping centers, restaurants, and other businesses sent employees home. Interstates and airports closed. So many cars were stranded that in Kansas City, they towed them off by the hundreds in order to clear the highways.

Thundersnow is rare, and a little bit weird. In a normal thunderstorm with rain, thunder can be heard for many miles from where the lightning strikes. Snow acts as an acoustic suppresser and the sound of thunder can only be heard for two to three miles.

When we wake up each morning, we expect the usual, and we can be caught off guard when the unusual happens. The unexpected can strike at any point in time. It can come in the form of a phone call, a text message, a medical test, a bulletin on TV, or a knock on the door.

Hundreds of mundane days can be shattered with one nanosecond of the unusual. We can often chunk our lives into sections based on moments when our world tilted and never quite righted itself. One of those times in my life was when the doctor told us Jim had “dementia of the Alzheimer’s type.”

When you hear news like that, your ears start to buzz, as if they can’t bear to hear the unexpected information. Your heart quickens, and you stop breathing as your brain echoes with the words it refuses to process. Denial, hope, and despair wage a battle to see which one can get the upper hand.

Jim always said, “I don’t have that.” He preferred to think the psychiatrist was inept. It turned out that Jim had a rare type of dementia. It wasn’t Alzheimer’s, but it was just as bad, with the same inevitable outcome.

Not a day passes in this world without someone struggling to live through an impossible situation. Globally, 156,000 people die each day. That is a lot of grief to go around. In order to live a happy, normal life, we often harden ourselves to suffering if it does not affect us personally.

On the flip side of the death card, we celebrate the births of 350,000 babies each day. Of course, some people have more cause to celebrate births than others do. Babies born into poverty, although loved, may be a worry to his or her parents who struggle to provide basic food and shelter. Through the joy, every parent is afraid that something will go wrong. Our instinct is to protect our children from the cruelties of the world, but that is a goal set up to fail. Too little protection puts them in danger, too much can make them vulnerable. Births and deaths while unusual in our personal lives are daily occurrences when we look outside ourselves.

What does the future hold? No one knows. The future is both as unpredictable and predictable as the weather. Weather is never an exact science. Yes, sometimes we can be warned of the possibilities, or probabilities, but what will really happen can be a different story.

This morning I saw two opposing predictions for the storm expected on Sunday. We can have another ten inches of snow, or a thunderstorm with rain. In either case, it is expected to come in the night, so it’s anyone’s guess as to what Monday will bring. Will it be a normal workday, or another weird day with thundersnow?

Copyright February 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s Future: Research or Palliative Care

I’m a baby boomer and I know just how old we are getting. This year I plan to retire and hope to have time, finally, to enjoy all the activities I’ve had to put on the back burner or reserve for a few weeks of vacation. What I don’t want in my future is to be brought down by Alzheimer’s as we know it today.

Alzheimer’s disease would rob me of my memories, my skills, and effectively end life as I know it. I want to remain active throughout my old age and still have the ability to enjoy life thoroughly. I want to be like my mother!

We are nearing the crossroads with Alzheimer’s as we baby boomers age. Left unchecked, 13.8 million of us can look forward to developing Alzheimer’s disease. I don’t think there are thirteen of us who want this future, much less 13.8 million.

Why is this important to us? We all want to think that we will be one of the lucky ones without Alzheimer’s in our future. The biggest problem is we are not investing in preventing Alzheimer’s. We seem to be sitting on our butts instead of doing something about Alzheimer’s now.

Do you know how much this country invests in Alzheimer’s research? Last year the National Institutes of Health invested $606 million in Alzheimer’s research. That seems like a lot of money, doesn’t it? In fact, for Alzheimer’s it was the first time research funding from NIH exceeded $500 million. Should we be doing a happy dance? Not so fast. How much will it take to find a cure for Alzheimer’s? Just to give it some perspective—NIH spends $6 billion a year on cancer, and $3 billion for HIV/AIDS.

I know we have a budgetary crisis, and I really think we need to do something about it. In 2012, the cost of Alzheimer’s care totaled $200 billion, including Medicare and Medicaid payments of $140 billion. The cost of Alzheimer’s care is expected to increase 500% to $1.1 trillion by 2050 as we baby boomers age.

Think about these staggering numbers for just a moment. I’ll admit that I have trouble wrapping my head around numbers that start with a “b,” much less a “t”. If you look at Alzheimer’s from strictly a financial viewpoint, you have to admit that something has to be done. The only logical way to stop this impending financial disaster is to find a cure, or at least treatment that will halt the disease before it destroys independent living.

Are we ever going to accomplish this goal without investing in research? That is a question we need to ask our legislators, and it is one we do ask each year during our Capitol Hill visits following the Alzheimer’s Advocacy Forum.

For a moment, let’s put all talk of financial considerations aside. The bottom line in this entire argument is the emotional impact on those diagnosed with dementia and their families. Alzheimer’s is a life-changing event from which there is no turning back. It takes strength and determination to continue with quality life for persons with the disease, their family, and friends.

Though my volunteer work with the Alzheimer’s Association, I’ve met many people with Alzheimer’s and caregivers who manage this devastating diagnosis with dignity and courage. They have allowed news media into their homes to bring awareness. They don purple sashes, talk to their legislators about the disease, and leave a sense of urgency in their wake. Advocates with the disease give a face to the 5.4 million Americans who are living with Alzheimer’s right now, right here, in the United States.

So when we talk about the future of Alzheimer’s, we need to push, and push hard, for a cure, not palliative care for 5.4 million people today or 13.8 million in 2050.  Each life disrupted by Alzheimer’s is one too many. Our loved ones are not statistics—they are human beings with families that love them and memories far too precious to lose.

Copyright © February 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Fighting the Paper War

For the past two days, I’ve been fighting the paper war and though I’ve won a couple of minor skirmishes, I cannot say that I’m anywhere close to winning. It seems that I have bags, boxes, storage tubs, file cabinets and various temporary containers chocked full of paperwork.

I’ll be the first to admit that I get totally aggravated with myself when I can’t find an important piece of paper. When I’m being good, I file things away, or at least put common papers in their designated spot. On most days, I throw my mail on the end table and may or may not look at it, much less sort it.

Considering how hectic my life is, it makes perfect sense that I work in organized chaos most of the time. I put one project aside to work on another with a shorter deadline. I shuffle bags containing my writing group, Alzheimer’s council, Walk to End Alzheimer’s, Sedalia Business Women, Business Women of Missouri, and writing projects. Sometimes, I feel like throwing everything in the air and working on it randomly.

Yesterday, I tackled some of the various boxes marked “go through” which means I got tired of looking at the paper, didn’t have time to sort it, and just gave up and boxed it. So tackling one of those boxes has to be on a day when I don’t have anything else to do…or not. That day hasn’t happened yet, so I just decided to take a slice of time from pending deadlines to look at the waste products from past projects.

I sorted into two piles—keep and throw away. After a while, I became more hardened to what I felt like I could just toss. I threw away memories along with many of my creative efforts. When in doubt, I figured many of the papers were stored on a thumb drive somewhere.

Tossing, sorting, and examining documents was going quite well until I came across Jim’s Safe Return application. Then, the world seemed to stand still for just a moment as I recalled filling out the form. That piece of paper was a reality check. If Jim wandered off, he could become lost and need help to be reunited with us.

The part of the document that brought me to tears was the location of his tattoos. I knew one was on his left wrist because he covered it with his watch, one was on his thumb, and another on his shoulder. For some reason, I had trouble remembering just which shoulder was tattooed with his name. I could always picture the tattoo in my mind’s eye: “Jim” obviously a homemade tattoo. It looked like a prison tat, but in Jim’s case, his cousin Joe did the honors when they were young.

When I first met Jim, I didn’t believe he owned a shirt without the sleeves ripped off it. So I saw the tattoo the day I met him, and nearly every day of our marriage. So why did I have this mental glitch about which shoulder?

While fighting the paper war, I found a document that confirmed the tattoo was on his right shoulder. Of course, it was! I’m sure I knew that all along.

Some memories are painful, but I’m thankful that I have them. With all the millions of memories running through 100 billion connectors in my brain, it is no wonder that some of them are hard to find. It might take something to jog that memory and bring it to the forefront. At least that’s my story and I’m sticking to it.

With the discovery of the Safe Return application, I decided the paper war was best left on hold for me to return and fight another day. It only goes to show that among all the worthless pieces of paper we hang onto, sometimes a gem exists among them that freshens a memory from a different time and place.

Copyright © February 2013 by L.S. Fisher

http://earlyonset.blogspot.com

Inquiring Minds Want to Know—Is It Really Alzheimer’s?

L.S. Fisher, Alzheimer's Advocate

There are two kinds of people when it comes to health issues—those who want to know everything and those who want to know nothing. One group falls into the category of die-hard realists and the other is filled with those in denial.

There aren’t any simple answers when it comes to health. A visit to a physician can make or break your day, and sometimes your spirit, depending on how he presents your health issues. But even more important is how you interpret the diagnosis you are given.

Getting an Alzheimer’s diagnosis is a long and arduous process. An entire battery of tests, scans, and evaluations are used to determine if you might have a treatable condition. Once other conditions—thyroid, drug interaction, vitamin deficiencies, too much calcium—are ruled out, your physician may give you a diagnosis of Alzheimer’s.

Hundreds of other related dementias exist besides Alzheimer’s. Since Alzheimer’s is the most common cause of dementia, it is the usual diagnosis. As the disease progresses, the type of dementia may become more evident as frontotemporal dementia, Lewy body disease, vascular or other common dementias. Some conditions can be determined by genetic testing—familial early onset Alzheimer’s or Huntington’s, for example.

For millions, the exact cause of dementia remains unknown or is determined by autopsy. We chose autopsy to get an exact cause of Jim’s dementia, which turned out to be corticobasal degeneration. Since Jim was diagnosed with Alzheimer’s, and not too many people know what corticobasal degeneration is, it is easier to say he had an Alzheimer’s type of dementia.

Currently, in the news is a discussion about a drug that allows a PET scan to detect Alzheimer’s plaques. The controversy is whether Medicare should pay for the $3,000 test. Opponents to the test say that it won’t help. I was floored to see the quote in the national article was from a physician in my hometown. The quote: “There’s never been a study that asked whether patients do better as a result of florbetapir testing,” said David Kuhlmann, a neurologist at Bothwell Regional Health Center in Sedalia, Missouri.

Okay, we all know there is no cure for Alzheimer’s and treatment is for symptoms only. Because of the bleak prognosis, no one seems to see a need for an accurate diagnosis. But early diagnosis is crucial in irreversible dementia for several reasons. First, it is important for a person with dementia to make important life decisions while they still can. Jim and I both signed advance directives, durable power of attorneys, and wills. Had we owned more, estate planning would have been even more important. Second, treatments are more effective in the early stages of the disease.

Putting aside all reasons for a diagnosis, and how it could actually help, there is the matter of cost, and Medicare needs to avoid unnecessary expense. So, this test costs $3,000. Expensive enough, I’d say. I’m going to throw out a ballpark figure of $20,000 to complete all the testing to attempt to rule out Alzheimer’s. In our case, most of that was paid through private insurance, and out of pocket, rather than Medicare.

Once we ruled out other conditions that could cause reversible dementia, we purchased expensive drugs that had no effect whatsoever on Jim, other than side-effects, because he didn’t have amyloid plaques. Of course, we didn’t know that until after he died. A $3,000 PET scan to find out his dementia was not Alzheimer’s, as diagnosed, could have saved many more thousands on drugs and costly emergency room visits.

I can think of a lot of scary diagnoses and can narrow down the ones that would make me take stock and reevaluate my entire life and lifestyle. Alzheimer’s type of dementia, cancer, and heart disease would be at the top of the list. I would only hope that if I were ever diagnosed with any of those three, I would be a realist and want to know every treatment available and evaluate my options to have the best life possible.

I’ll admit that Alzheimer’s, or any related dementia, scares me the most. I’ve seen it, felt it, and breathed it throughout Jim’s journey. Through my volunteer and advocacy work, I’ve met many people with Alzheimer’s and their caregivers who face the diagnosis with grace and unbelievable courage. An Alzheimer’s diagnosis affects not only your body, but your skills, communication, and a lifetime of memories that connect you to your loved ones. Have you ever thought about how empty you would feel without memories?

Isn’t it important to know what is wrong with our health, so we can either make it right, or at least do what we can? 

Copyright © L.S. Fisher, February 2013

www.earlyonset.blogspot.com