Headed to DC

This year marks my seventeenth trip to D.C. to join my voice with fellow advocates at the Alzheimer’s Advocacy Forum.

Essential preparations for this annual journey began on Wednesday with laundry. It seemed that most of the clothing I planned to wear was in need of laundering. Thursday, the packing began and I felt pretty good when I went to bed at midnight. My suitcase was full. Friday morning was going to be easy-peasy. All I had to do was make a few final preparations, grab my bags, and head to the airport to spend the night at a hotel.

The first problem was I shut off my alarm and overslept. I took the dog out and then it was time to sign in to get my boarding pass. My sign in wouldn’t work. I decided to ask for a new password and my security questions weren’t correct. What? I was giving the only answers. After much agonizing, I realized I was entering an incorrect password and once I corrected my error, I was in.

The few preparations turned into hours. I took my PC downstairs to hook into my color printer and it wouldn’t work. I couldn’t figure it out, so Harold came down and after a few manipulations, declared that I didn’t have it plugged in correctly.

I hate it when that happens.

Back upstairs, I prepared to leave—about four hours after my target time.

“Just sit down and relax a minute before you leave,” Harold said. “Otherwise, you’ll forget something important.”

“I’ll go over my checklist,” I said.

The checklist looked good. Then Harold started asking about this and that...he thinks of everything. Of course, he’s the planner; I’m the seat-of-the-pants person. Eventually, he managed to think of something I’d forgotten.

“What would you do without me?” he asked.

“Go off half cocked all the time,” I admitted.

When I headed out the door, it was raining, and the car clock told me that my timing was perfect to hit Kansas City right at rush hour on a Friday night. Oh, brother.

By the time I reached I-70, rain was pouring and the traffic was pretty well bumper-to-bumper. At one time, I looked in my rearview mirror to see a semi tailgating me. My windshield began to fog, and my wipers were working their butts off to keep the rain from interfering with my vision.

I called Harold for a weather report. “You should be running out of the rain by the time you reach Kansas City,” he said.

The radio was on a country music station and I found the music to be soothing. I turned up the radio and karaoked to my heart’s content. Once again, meteorologist Harold was correct. When I reached the city, the rain cleared just in time for a weird traffic jam on I-435.

Finally, I reached the hotel and everything was better. I checked into a beautiful room and although Harold had told me of all the fabulous restaurants nearby, I ate at the hotel. I was famished and the turkey club with “house” made chips tasted wonderful.

After giving myself a mani-pedi, I decided to make a cup of tea. First problem, no cups. I called housekeeping and that problem was solved.

I was darned ready for a good night’s sleep. After all, the next day was going to be a long one.

After sleeping soundly for a few hours, I woke up at 4:30 and couldn’t go back to sleep. I decided to make a cup of coffee and relax for a while until time to catch my flight. I poured water into the coffeemaker, put Coffee-mate in the cup, and turned it on. The pot stopped gurgling, but when I checked, all I had was hot Coffee-mate water. I had neglected to put in the coffee. Second time, I did everything right except I forgot to turn on the pot. Finally, I sat down with a cup of coffee and decided I would get ready and head to the airport.

After such a rocky start, the rest of the trip would have to be smooth skies. By mid-afternoon, I’d be in D.C. and have a few days to see the sites and spend with my friends. So, I grabbed my purple suitcase and set off for another round of fighting to end Alzheimer’s.

Copyright © April 2017 by L.S. Fisher

http://earlyonset.blogspot.com

A Fleeting Shadow

At a funeral recently, the pastor referenced a book of Psalms that referred to life as a “breath” and our days as a “fleeting shadow.” Sunday morning, I had planned to use these thoughts as inspiration for a blog post.

Before I had a chance to write my thoughts, I received the shocking news that my 46-year-old nephew had committed suicide. I pushed all thoughts of writing aside and went to be with my mom who was devastated by the news. My heart ached for his parents who were going through the loss of a child for the second time. They had lost their daughter to cancer a scant five years earlier.

We had a discussion, my brother and I, about the long, slow process of dying versus sudden death. With one, you have time to say your goodbyes and with the other, you just hope and pray that you parted on good terms. One slowly breaks your heart, and the other is a shock to your heart.

Between PTSD and clinical depression, Jim was plagued with suicidal thoughts. It was a constant worry for me, and it was many years before I realized it wasn’t my fault. It was hard to admit there wasn’t really anything I could do to change it. I encouraged him to see a psychologist and to take the medicines that helped him function.

My sister made an observation. She said if someone dies from a heart attack, you don’t blame them. If someone has something wrong inside their brain—thoughts they can’t shut off, psychological problems, chemical imbalances—then maybe their death is no more a choice than having a heart attack.

We don’t often choose how we die; it chooses us. When Jim died after ten years of dementia, I learned what the “long goodbye” meant. Although, death was a given, it didn’t mean it was well taken. It didn’t matter that I should have been ready when Jim died—I wasn’t ready to let him go. The emotion that surprised me most was anger. When the breath was gone and his days passed like a fleeting shadow, I was furious that he had to spend the last ten years of his life fading away.  

We all talk about closure, but I have to agree with my brother that closure doesn’t exist. That isn’t quite the word because some deaths just leave a big empty spot that can’t be refilled. We just keep moving and hope the pain of loss will fade to a manageable level.

Lately, when I walk out the door, I kiss my husband goodbye—every time. “All the time you hear about people being in a car wreck without saying goodbye,” I told him. I call it my “insurance.”

More than insurance, it’s a reminder that life can be snatched away in a heartbeat. We need to make those calls, write those notes, visit our loved ones, forgive, go on vacation, have fun, and make the most of each day.

We should be thankful for the time we have to love, dream, and live. Life is precious. Each sunrise we have another chance, another day, to right a wrong, lend a helping hand, or to make a difference in some small way. A breath. A fleeting shadow. That’s all any of us have.

Copyright © March 2017 by L.S. Fisher

http://earlyonset.blogspot.com

Lewy Body Dementia

“My mom has dementia,” the woman said. “How is that different from Alzheimer’s?”

“I think of dementia as an umbrella,” I said. “Beneath the umbrella of dementia are several diseases. Alzheimer’s is the most common kind of dementia.”

In the 2017 Alzheimer’s Disease Facts and Figures, the Alzheimer’s Association lists several diseases that cause dementia and associated characteristics. They are Alzheimer’s, vascular dementia, dementia with Lewy bodies, mixed dementia (more than one cause—the most common is Alzheimer’s and vascular dementia), frontotemporal dementia, Parkinson’s disease, Creutzfeldt-Jakob disease (rare, can be genetic or caused by consuming products from cattle with mad cow disease), and normal pressure hydrocephalus.

The Alzheimer’s Association does not list the rare disease Jim had. His diagnosis was early onset Alzheimer’s disease, but his autopsy revealed the disease he actually had was corticobasal ganglionic degeneration, a disease I had never heard of. The report also mentions “incidental Lewy body,” severe frontotemporal atrophy, tau positive glial inclusions in the white matter, but no evidence of Alzheimer’s disease.

It is easy to understand with overlapping symptoms why diagnosis is so difficult. While searching for an answer to the “why” of Jim’s dementia, we received several conflicting theories, including Parkinson’s and Pick’s disease, before physicians finally settled on Alzheimer’s.

Of course, the mention of Lewy body in Jim’s autopsy, incidental aside, had me researching Lewy Body Dementia (LBD). This disease affects around a million people in the United States.

There is no single test to diagnose LBD, and in the early stages, it may be confused with Alzheimer’s, Parkinson’s, or a mental disorder. Diagnosis is made through examination, laboratory tests, brain imaging, and testing memory and cognition.

Through my volunteer work with the Alzheimer’s Association, I’ve met fellow advocates diagnosed with LBD. I remember one man telling me that his hallucinations were disruptive and disturbing. Unfortunately, people with hallucinations or other behavior problems may be treated with anti-psychotic drugs. Haloperidol (Haldol®), olanzapine (Zyprexa®), and resperidone (Risperdal®) should be avoided because of dangerous side effects, including an increased risk of death.

Lewy bodies attack several different regions of the brain, which causes a variety of problems for the person with the disease. Short-term memory, perception difficulties, processing information, and language issues can be confused with Alzheimer’s. Movement disorders are similar to Parkinson’s with tremor and muscle stiffness. The distinction between LBD and Parkinson’s dementia is based on the timing of dementia. In LBD, dementia will quickly follow parkinsonism within a year, but people can have Parkinson’s and not develop dementia for many years.

People with LBD often have sleep disorders. The vivid dreams associated with REM disorder may cause a variety of symptoms ranging from talking while sleeping to punching a bed partner. A person with LBD may be tired all the time due to insomnia or restless leg syndrome. They may sleep excessively during the daytime.

LBD is managed in much the same way as Alzheimer’s disease. In addition to physical, speech, and occupational therapy, the Alzheimer’s drug Exelon® may be used. Other drugs may be used to help with movement, sleep disorders, and behavioral problems. The surgical procedure used to relieve the movement symptoms of Parkinson’s is not used when a person has LBD because it may adversely affect cognition.   

LBD causes a variety of behavior and mood changes running the gamut from depression and apathy to agitation, delusions, and paranoia. Managing the health care of a loved one with LBD can be quite challenging for a care partner. If you are caring for a person with LBD, it is important to enlist help from family and friends.

Taking care of yourself and taking breaks will make you a better caregiver. Do not neglect your own health! When dealing with a progressive, degenerative disease, it is crucial that you find moments of joy. Continue to enjoy activities with your loved one as much as you can for as long as you can. Convert challenges into opportunities to use your creativity to live life to the fullest.

Copyright © March 2017 by L.S. Fisher

http://earlyonset.blogspot.com

For an informative publication about Lewy Body Dementia:  https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction

March Madness

With Donna Hirner-Gardner at Legislative Conference

March marched onto my calendar with the purpose of seeing how sane I could remain in an insane world. The month began with a series of meetings. By Friday I was a little bedraggled and had driven to Jefferson City for the Business Women of Missouri legislative conference.

I arrived a little early and hiked from the parking garage to the capitol building to drop off an Alzheimer’s packet. Oops, I should have known everyone would leave early on a Friday, so that didn’t happen. I hiked back to my car and drove to the hotel by a circuitous route since I was coming in from another direction.

After I checked in and carried all my various bags to my room, I decided to relax with a cup of hot tea. I made the tea and opened one of those little packets with a napkin, creamer, sweetener and stir stick to get some sugar for the tea. The cup fell and the hot tea splattered all over me, but most of the tea spilled onto the floor.

I looked at the little napkin. That was not going to work. I dialed “O” and asked if they had anything I could use to clean up the tea. “Just use a towel,” he said, “and we’ll send you up a clean one.”

Relaxation? Who needs that? I spent my relaxing time cleaning up the mess. By the time I finished, it was time for my committee meeting.

Here it is the fifth of March and I’ve finally had a moment to sit down and fill out my wall calendar for the month.

Everything is on my phone, so my husband thinks this is an exercise in futility, but I like to be able to glance at the calendar and see what’s ahead instead of waiting for a “ding” that tells me I need to be somewhere else at the same exact time I hear it.

With the two-day legislative conference behind me, I filled out the remainder of the month. All I have to say is it is madness indeed. I have exactly four days in the entire month that doesn’t have one or more events or appointments. Madness! Or at least, what was I thinking?

I have several Alzheimer’s events lined up. Monday is my Alzheimer’s district meeting with Congresswoman Hartzler’s staff. Tuesday is the Alzheimer’s walk kick-off. I have two Alzheimer’s conference calls this week: Ambassador and combined work group. Later in the month is a day for corporate sponsors, but the biggie is at the end of the month when I’ll be going to the Alzheimer’s Advocacy Forum in D.C.

To see all the activities on the calendar is a reminder that when I do have free time I need to be editing, organizing my electronic files, paying bills, catching up on my to-do list, fulfilling promises…and all the other things that don’t make the calendar or the to-do list.

A lot of the events on my mad, mad, mad calendar are fun, and the ones that are business are spent with people whose company I enjoy. Often, I spend as much time laughing as working.

With March comes the promise of springtime—flowers, birds, bees, plants, greener grass. Oh, yes, grass. Mowing? I’ll think about that when the time comes.

Oh, come on. I know I’ll have time to read a book, pet the dog, and maybe take a nap from time to time. I’m going to guard those four free-and-clear days as if they were made of solid gold, because, actually, they are!

March may be madness, but April will be here before I know it. I just peeked at April’s calendar, and optimism aside, April is a popular conference month...

Copyright © March 2017 by L.S. Fisher

http://earlyonset.blogspot.com