Sunday, March 31, 2019

See Al? Be Like Al

I'm in Washington DC for my 19th Alzheimer's Forum. You would think after 19 times, it would be the same-old, same-old, but you would be wrong.

Here it is almost April, and we had April Fool's a few days early. After a short warm snap, Jennifer and I had no more gotten to the airport that snow began to fall. We were flying Southwest so we had no assigned seats, but Jennifer's mascot elephant, Al, held my seat for me until I boarded the plane. A disembodied voice from the cockpit ask us to be patient while they de-iced the plane.

I was curious since I had never been on a plane that had to be de-iced. Pretty soon, a cart pulled up, with a bold sign letting us know that "The Ice Man" was on the job. A ten-second squirt and we were off and running.

After grabbing our two purple suitcases off the carousel, Jennifer and I embarked on the second new experience of the day. I've always caught a cab to the hotel, but Jennifer had an account, and we were to be picked up by a white Toyota by a Lyft driver named Olga.

We were both excited to be in DC on a pleasant, sun shiny day and didn't mind waiting a few minutes for Olga to arrive. Jennifer was in contact with her and she assured us she was nearby. As we stood there viewing the screen, a young man standing nearby said, "Are you Jennifer?"

We found out it was his first attempt with Lyft, but he was sharing a ride with us. Jared was going to a different hotel. They both received notification that Olga had arrived and she was in a blue Camry. We spotted her and loaded up. Lucky for us, all Jared had was a backpack because the truck was full of purple.

Al was in the trunk in the carry on. We should have kept him as a navigator. Olga told us it was her first day with Lyft after working with Uber for six years. So, here we were, a car full of newbies heading into DC proper looking for not one, but two hotel. Jared was closer so the navigation system was set up to let him off first. Olga took off headed in the direction of the nav, and I could almost hear Al screaming in the trunk, "I don't think she knows where she's going!"

After we had made several exits, it looked to me like we were closer our hotel located near the zoo that a hotel close to the White House. After all, I'd been on several harrowing taxi drives to the same hotel.

Jared pulled up navigation on his phone. "We're pretty close to our hotel," I said from the back seat. I pulled up my own map. It said we were within six minutes of our hotel.

Olga made a U-turn and headed back across the bridge we had just crossed. Jared tried to be helpful, but she still missed an exit or two, narrowly missed crashing into a car that cut in front of us. Thankfully, her car had great brakes!

"We are getting a nice tour of the city," I remarked.

Finally, after about forty minutes, we found Jared's hotel. By then, my phone had "re-routed" several times and Olga was headed in the right direction. Her phone kept telling her to drop Jared off instead of telling her how to get to our hotel. Eventually, her navigation and mine agreed. I saw the landmarks I was used to seeing including Marilyn Monroe's face on a building. "We are close," I told Olga. I saw the Omni Shoreham where we'll be staying the last night. I saw CVS, familiar restaurants. "This is our neighborhood," I told Jennifer.

Olga zigged when she should have zagged. "Here it is," she said. It was the back entrance. "All you need to do is go around the block and you can let us off in the front," I said. She took off, flew past the front entrance. Oops. I finally saw a side entrance we often used. "Here," I said. "Let us off here."

"Are you sure?" she asked. "I don't think this is the right hotel." Well, the name was right above the door.

When we got to our room and unpacked Al, he had a smug look on his face.

We immediately took off to look at the monuments, cherry blossoms, and the kite flying. As we rushed off to get caught up in the humongous crowds, Al stayed behind in the room patiently waiting for us to attend to the business we came to DC to accomplish.

He wears his purple beads, his AIM (Alzheimer's Impact Movement) pin, and his Walk to End Alzheimer's Team Captain button. Al is ready and waiting.

Be patient, Al. In a few hours, we will be all business and determination. We will be like Al and fight to #ENDALZ.

Saturday, March 23, 2019

Ring of Fire

A few days ago, I was listening to some songs on my Kindle in an attempt to find something to sing with the Capps Family Band at our nursing home gigs. I listened to Patsy Cline, Emmylou Harris, Ray Price, Jim Reeves…and the list goes on. Eventually, I went out of YouTube and decided to go to bed.

After I was ready for bed, I woke up my Kindle and clicked on the Book tab. I heard the intro to the Johnny Cash version of “Ring of Fire” with its unmistakable mariachi horns. The music stopped when I opened the book I’d been reading. The book? Ring of Fire by Brad Taylor.

Some might call that a coincidence, but my goose bumps classified the experience as more “weird” than “coincidental.” It seemed it was a message of some kind, but I didn’t have a clue as to what it could possibly mean.

So if we think of love circled with a fiery ring, I believe you could say that nothing could penetrate that ring to destroy the all-consuming love within its circle. However you look at it, fire in the song is symbolic. Fire has many symbolic meanings, and I found the one that could mean something to me: Issues you are consumed by—a strong passion or prolonged obsession. Regardless of that stalker-esque phrase, I choose to relate it to my passion for being an Alzheimer’s advocate.

I contacted the Alzheimer’s Association soon after Jim was diagnosed with an Alzheimer’s type of dementia. They connected me to a support group. Both the local chapter and the national Alzheimer’s Association sent newsletters. Through the newsletters, I learned about a walk in our hometown known then as the “Memory Walk.” Jim and I registered for the walk and on walk day discovered we were the only ones from our town. The next year, I became an Alzheimer’s volunteer and coordinated the walk.

When my daughter-in-law and I tried to get corporate sponsors, we realized that people didn’t know much about Alzheimer’s. They often referred to it as “old timers” disease. They thought age caused it and it just happened to elderly people. No big deal—just a part of growing old. The first priority was to educate them that Alzheimer’s was a degenerative brain disease.

I went to Washington, DC, for the Alzheimer’s Forum for the first time in 2001. By then, Jim had been in long-term care for a year. We went to ask for $1 billion for Alzheimer’s research and for legislation to help the families dealing with Alzheimer’s. It didn’t take long for me to find out that most senators and representatives didn’t know much more about Alzheimer’s disease than the folks back home. After much persuasive talk, we got a tiny fraction of our lofty goal. This pattern was repeated year after year. Sometimes we gained a small amount, other times we held steady, but a few times our funding was decreased.

A lot of things have changed since my first trip to DC. As I look forward to my 19th trip next week, I know we will meet with legislators who know exactly what Alzheimer’s is and how devastating it is to the families and to our government. Our senators and representatives are important partners in the fight to end Alzheimer’s.

Yes, we’ve won many battles, but now we need to win the war. Current research funding for Alzheimer’s is beyond our wildest dreams of nineteen years ago. The National Alzheimer’s Plan was passed in 2012 to find an effective treatment or cure by 2025. It seemed like we had plenty of time to meet our goals, but time has gone by with promising treatments falling short of the target.

We must fund successful research and break through the ring of fire that separates Alzheimer’s disease from a cure. In the meantime, we need to surround persons with dementia and their care partners with a circle of love and caring.

Before Johnny Cash recorded “Ring of Fire,” he had a dream of the mariachi horns. He made his dream come true by taking action. Well, I have dreams too, and I plan to take action at the Alzheimer’s Advocacy Forum on April 2.

Copyright © March 2019 by L.S. Fisher

Monday, March 11, 2019

As Time Goes By

Well, yesterday we made the big switch to Daylight Saving Time. At my age, any change isn’t easy, and I sure miss that hour.

It seems as if time goes by quicker each day. I only have my Christmas decorations as far as the landing, waiting to go into their storage boxes. My snowmen are still sitting on the ledge although, gee, it hasn’t snowed in a week. Our first almost-spring rain melted the last of the snow in the yard as long ago as yesterday. Where has the time gone? St. Patty’s day is less than a week away and Easter is on the horizon.

I believe that it is the busyness of life that hides more hours than the one we lost between Saturday and Sunday. Juggling several projects at one time means I’m constantly putting out fires. Sometimes, I make progress and feel like I’m attacking the fires with a high-pressure fire department hose. More often than not, I look at the growing to-do list and might as well be beating back the flames with a gunnysack, and one that isn’t even wet.

Where has the time gone? I look at the year 2019 and realize how vividly I can remember events of fifty years ago. This is the year of a golden anniversary that will never happen. Jim’s life was cut short by an Alzheimer’s type of dementia—a disease I had never heard of—corticobasal ganglionic degeneration.

CBGD is a rare disease that attacks the cerebral cortex and the basal ganglia in the brain. The onset usually occurs between the ages of 45 and 70 with an average duration of six or seven years. After he looked at Jim’s autopsy report, his neurologist explained that CBGD is a movement disorder. Initial symptoms are usually difficulty walking because of stiffness, shakiness, or balance problems. This is usually followed with problems with speech and comprehension.

For some reason, Jim’s earliest noticeable symptoms were with memory and speech. Early in the disease, he developed aphasia from the damage to his brain. He had trouble speaking and understanding words. Jim also had alien limb syndrome, especially in his right hand. He had to have his little finger amputated due to infection caused from clinching the hand he forgot how to use. He also had ideomotor apraxia (IMA) that resulted in his feet appearing to stick to the floor causing him to lose his balance.

I was relieved to learn that CBGD is almost always sporadic and not inherited. A variant in the tau gene is associated with a predisposition to CBGD, meaning it can occur more often in some families. However, not all people with CBGD have the tau gene variant, and not all people with the variant develop CBGD.

Jim passed away in 2005 after ten years of living with CBGD. Next month marks the fourteenth year anniversary of his death. Where did the years go? Sometimes, it seems a different lifetime, a different me. Other times, it takes my breath away as the realization that he is forever gone batters my heart anew. The pain is physical in those moments and I can almost feel life slipping away.

How did seconds turn into minutes, and minutes into hours? How did twenty-four of those hours turn into days? How did the days turn into years? How many years will you and I have in a lifetime? The questions remain the same, but the answers are the biggest mystery of all.

Copyright © March 2019 by L.S. Fisher

Sunday, March 3, 2019

Memory Day 2019

The typical Missouri weather forecast called for a possibility of ice on Memory Day. The night before, Jessica and I held a text discussion trying to decide how early we had to leave to make it to the Capitol on time. To complicate things, the Capitol Building was undergoing renovations and only one entrance was open.

My husband watched me busily texting, as I told him the various times under consideration. “Well, we decided to leave at 8:00,” I said.

After I put the phone down, he asked, “Where are you meeting?”

“Well, since we didn’t decide anything different, I assume we will meet at the same place we meet every year.”

About that time, Jessica sent another message. “We didn’t decide where we were meeting.”

After all our weather worries, the ice stayed away, and we had an uneventful trip to the Capitol. Soon we met with other purple clad advocates. We made new friends and reunited with advocates we had met previously. Several hugs later, we split up into teams to visit our senators and representatives. Jessica, Mark, Samantha, and I donned our purple sashes, put on our figurative advocacy hats, and set off to keep our appointments.

We had two asks this year: Fund Alzheimer’s Grants for Respite and Pass the Structured Family Caregiver Act. It was easy for me to support both bills wholeheartedly.

Every caregiver needs time away to refresh and rejuvenate. The state of Missouri has awarded $450,000 in Alzheimer’s Grants for respite for several years in the past, and we asked for the same amount again. Of the Missourians receiving respite funds, 99% report they can keep their loved one at home longer. By delaying nursing home placement by a mere two months, the state could save $2 million in Medicaid costs. What a deal!

We also asked our legislators to pass the Structured Family Caregiver Act. This pilot program offers a new option under Medicaid for full-time caregivers. The caregiver would have the support of an in-home agency that would provide professional support. The family would receive care planning, training, remote monitoring, and monthly visits. The caregiver would receive a daily stipend to help relieve financial hardship. The goal of this program is to keep persons with Alzheimer’s and related dementia at home rather than in nursing homes. The cost to the state would be about half the cost of a long-term care facility.

Alzheimer’s is the most expensive disease in America for both the government and the families who care for loved ones with the disease. The cost of incontinent supplies alone would strain the budget of a Medicaid eligible household. Imagine the plight of a low-income family dealing with a high cost disease.

At the end of our visits, we attended the Memory Day Ceremony in the Rotunda. Governor Parson talked about his personal experience with Alzheimer’s and pledged his support. Advocate Terri Walker spoke about receiving her diagnosis on her grandson’s birthday. Her well-spoken words had the power to touch our hearts. Her youth, sparkling eyes, fabulous haircut, and lovely purple dress served well to strip away any preconceived stereotypes of the face of Alzheimer’s.  

Families dealing with Alzheimer’s need our support, our hugs, and our advocacy. Until we find a cure for Alzheimer’s, I will continue to join other committed advocates at the Missouri Capitol and on Capitol Hill in Washington, D.C.

Copyright © March 2019 by L.S. Fisher