Presentations

Thursday, April 30, 2015

What Is Alzheimer's Disease?


At the first Alzheimer's Memory Walk I coordinated, a reporter from a local radio station placed a recorder beneath my chin, and asked, “What is Alzheimer’s?” When he had asked for an interview, I expected him to ask what our financial goal was for the walk, why I was personally involved, what the money was used for, who our sponsors were, what it was like to be a caregiver, or even why purple was the “official” color. For some reason, it never occurred to me that he would ask me to define Alzheimer’s disease.

I believe my answer was, “Alzheimer’s is an incurable degenerative brain disease that affects memory and a person’s ability to perform daily tasks.”

Alzheimer’s is not an easily defined disease. Even if you give a textbook, or dictionary, definition, it falls so far short of the scope of the disease that you might as well describe a malignant brain tumor as “a headache.”

Yes, official definitions might give a clinical description that says “a general term for memory loss and other intellectual abilities serious enough to interfere with daily life.” I’m not so sure that this disease “interferes with” daily life so much as it replaces life with a new reality. You go to a place where nothing is the way it had been, and you know it never will be the same.

It is important to know what Alzheimer’s does to the brain; otherwise, you will expect the impossible. Without the knowledge that the brain is deteriorating, it is too easy to believe that someone is being willfully stubborn or “pretending” they cannot remember.

In 1906, Dr. Alois Alzheimer, a German psychiatrist and neuropathologist, had a fifty-one-year-old patient, Auguste Deter, who died after she exhibited odd behavior and suffered from memory loss. During the autopsy of her brain, Dr. Alzheimer discovered shrinking of the cortex, and the presence of amyloid plaques and neurofibrillary tangles. Amyloid plaques and tau tangles became the hallmark of Alzheimer’s disease.

Most research centered on ways to rid the brain of amyloid plaques. More recently, researchers at Mayo Clinic have focused on tau. The study’s lead author, Neuroscientist Melissa Murray, Ph.D, in Brain described the role of tau as “railroad ties that stabilize a train track that brain cells use to transport food, messages and other vital cargo throughout neurons.” She described tau as “the driver of Alzheimer’s.”

As research moves closer to unlocking the mystery of Alzheimer’s, it is important to note only 45% of those with Alzheimer’s, or their caregivers, report being told of the diagnosis. This compares to 90% of people with cancer and cardiovascular disease knowing their condition.

Why is it so important to know of an Alzheimer’s diagnosis since the disease is incurable and has no treatment to slow the progression? I know from experience that crucial decisions need to be made while the person with the disease can help make them. It is important to get finances in order and to put in place medical and financial durable power of attorney documents. Knowing the diagnosis will also help families connect with community resources.   

The video attached to this blog explains how Alzheimer’s affects the brain. To know how it affects lives and hearts, talk to a person with the disease or a caregiver. They are all too familiar with the daily challenges that truly define the disease.   


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

Thursday, April 16, 2015

Death and Taxes

April is a month that makes me think of death and taxes. April 15 came with alarming speed, and for the first time in a decade, I filed a joint return. Of course, we used a handy-dandy program to plug in the numbers. But what can I say, other than taxes are a little bit complicated. Bottom line turned up a shocking sum that I owed in taxes. Even paying what I thought was an unreasonable amount of quarterly estimated taxes throughout 2014, I wound up in debt to the IRS and to the state of Missouri.

Now, to prepare for the current year. Last year’s estimated taxes were only about a third of this year’s amount. Ouch! For all my complaints about taxes, I feel fortunate that I have a great retirement plan.  

What is it they say about death and taxes? April is also the month that hurts my heart. Jim left this world April 18, ten years ago. A decade. It doesn’t seem possible that it could be that long ago when I remember that day so plainly. Funny, how the more you want to forget something, the less likely you are to do it.

The only positive thing I can say about Jim’s death is that it gave me back the man I knew before dementia. During the years struggling in the grip of the disease, it came to a point where the person he was faded, and he became a different person. In order to make it through that tough time, I refused to compare who he was to who he had been. It was easier to accept the unacceptable changes and love him “as is.”

After Jim’s death, I eventually was able to embrace the man he was before the disease. I could smile at old photos and memories before the dark days of dementia. I could remember our Colorado vacations, our trips to Oregon, and our big adventure of building our own home. So many good memories outweigh the sad times.

Life is a balance: good and bad, smiles and tears, joy and pain. You can’t fully appreciate one without the other. If you were never sad, you wouldn’t appreciate being happy. Part of the wonder of life is that we don’t know what is going to happen the next day. Life can change in a heartbeat. Our world can turn upside down and it may take years, or decades, for it to righten again.

Ben Franklin said that death and taxes were the only two certain things in life. As for taxes, I guess, it means we do have income, and we can be thankful for that. It’s hard to find much good to say about death, unless we can say we lived fully until that time. Jim lived fully until dementia made that impossible.

On April 18, I want to remember Jim’s life and not his death. I want to remember his laugh, his corny jokes, and most of all, his loving heart.

Copyright © April 2015 by L.S. Fisher

http://earlyonset.blogspot

Wednesday, April 8, 2015

Unlikely Friendships

You’ve always heard of fighting like dogs and cats, so Harold was concerned when the stray kitten showed up on our doorstep. It was a little worse for wear: tail torn off and bloody back legs. The kitten was dehydrated and hungry. What else can you do when a teeny kitten refuses to leave, but just sits there mewing much louder than you’d think possible?

Enter Neptune into the household ruled by Lucy. Just a short year before, Lucy had wormed her way into our hearts in the exact same manner—a stray who took up residence.

Harold was worried that Lucy wouldn’t like the cat. I introduced them by letting them touch noses, and they had many staring contests. The cat stayed on the front porch, and Lucy was queen of the deck.

Cats being curious, Neptune eventually approached the deck. At first, the dog barked and Neptune backed away. That didn’t last long. Soon Neptune was darting in front of Lucy and scooting behind the grill.

“The cat shouldn’t be on the deck,” Harold said as he shooed Neptune away. A few minutes later, the cat slid through the rail to venture on the deck again.

After a few weeks, Lucy quit barking at the cat and they declared a truce. The cat took over Lucy’s bed, and Lucy would lie beside it and nose Neptune. Sometimes they got a little rowdy, but neither seemed to be scared of the other.

While I was gone to the Alzheimer’s Forum, Harold said, “The cat is going to have to go. They mock fight and one of them is going to get hurt.” I don’t believe he was worried so much about Lucy hurting Neptune as he was about Neptune scratching Lucy.

By the time I got home, he had to show me how they acted. When he took Lucy for a walk in the backyard, the cat went down the steps side-by-side with the dog. Then, the cat ran up a tree, only to sidle down and launch a sneak attack.

All was quiet when we were inside. On the surveillance camera, we saw them lying together on the same chair while four other chairs remained unoccupied. Now, Lucy prances about each morning anxious to go onto the deck to play with her unlikely friend.
 
It seems that throughout life, we all have unlikely friends. At the Forum each year, I look forward to spending quality time with my two friends, Kathy Siggins and Sarah Harris. It’s an unlikely friendship when you consider that Sarah lives in Virginia, Kathy in Maryland, and I live in Missouri. Our friendship is never diminished from spending time away and when we meet at the Forum, we haven’t missed a beat. The Forum is like a special homecoming of the heart.

We all lost our husbands to an Alzheimer’s type of dementia. We met at the Forum and had an immediate connection. Now, it would be hard to imagine my life without them.

These serendipitous friendships are promises that nothing is really random. No matter what happens, we will meet the people we are supposed to meet and fulfill the purpose we were born to accomplish.

“If it hadn’t been for Alzheimer’s,” Sarah said, “we would have never met.” This is an undeniable truth. Our adversities defined our strengths and shaped our souls allowing us to embrace our unlikely friendship.

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