Sunday, July 29, 2012

The Last Frontier

Jim was always adventurous and talked about the places he really wanted to go, but hadn’t been. With his extensive traveling, it was a pretty short list. He wanted to go into space—the final frontier of Star Trek fame.

More realistically, Jim wanted to go to Alaska—the last frontier. Jim talked about Alaska and the wide open spaces, mountains, snow, ice, sled dogs. I thought about glaciers, landslides, grizzly bears, danger, and goosebumps from bone-chilling below zero temperatures.

Jim and I were alike in many ways, but this frontier business wasn’t one of them. He always said he wished he had lived back in the frontier days.

“Have you ever thought about how long it would take to cross Kansas?” I asked him. It seemed to me that it took forever to cross Kansas in a car, and couldn’t fathom making that trip in a wagon. “Not to mention the little problem with having to hang onto your scalp.” He really didn’t want to get me started on this topic. I didn’t think about the adventure—I thought about the inconveniences. Not even Matt Dillon or Rowdy Yates could have lured me back into the untamed Wild West. No thank you.

As far as the “final frontier”—space—no way did I want my body rocketed into the wild blue yonder at warp speed. I won’t even say what going into space would scare out of me.

Jim never personally saw either of these “frontiers” but, ironically, I was invited along for an Alaskan cruise. My brother and sister-in-law planned to treat Mom to a cruise and even stranger was that it took only about a nanosecond for me to agree to go as my mom’s roommate. The process took several months, but on the first of July, we flew to Seattle to board the ship for our cruise.

As I looked at blue icebergs in Tracy Arm Fjord, rode a train to White Pass and Yukon, gazed at glaciers, admired upside-down tree gardens, rode in a horse-drawn carriage, and cruised on a luxury liner that reminded me of the Titanic—especially as we navigated through the icebergs. The rugged landscape does indeed look like a frontier.

The cold was the extreme opposite of the weather at home. Cell phone conversations were filled with the triple-digit weather while I shivered in my coat. I heard about the drought at home while we lamented the elusive sun and the almost constant rain.

Okay, I’ll admit, that seeing Alaska from a private deck on a Carnival cruise ship is not in anyway a hardship . We spend days relaxing and cruising past majestic mountains, icebergs, and glaciers. Heck, I could even watch from the comfort of my bed. And we never knew what it was like to be hungry. It seemed that we spent our time onboard either eating or being entertained at one of the full production shows. My mom, of course, enjoyed the casino and we were forced to keep her company. We had trouble finding our way to the dining room, but never had a problem finding our way to the casino. Then, when we would make our way back to the cabin after our activities, our bed would be turned down, a mint placed on the pillow, and towel art animals would be on the bed. Snuggled beneath the covers, it was easy to forget how chilly the weather was outside.

It was a trip I enjoyed, but Jim would have been ecstatic to behold the Alaskan landscape. At times, I could almost feel Jim looking over my shoulder and know he would have loved spotting whales, bears, and wildlife. I used his “animal watching” binoculars to get closer views of the wonders unfolding around us.

Traveling with Jim is one of the things I miss. Jim loved frontiers whether final or last. Strange, unchartered ground brought out his sense of adventure.

Copyright © July 2012 L. S. Fisher

Sunday, July 15, 2012

ABC Article about Alzheimer’s International Conference Features Jim’s Story

Recently, I heard from Dr. Christopher Tokin, an ABC health writer, requesting an interview for an article about new therapies for Alzheimer’s disease. After reading my blog and one of my books, he wanted to include information about Jim in an article introducing the Alzheimer’s Association International Conference in Vancouver.

Being the skeptical person I am, the first order of business was to check out Dr. Tokin to make sure he was the person he said he was. After a Google search, I was confident that Dr. Tokin was a health writer for ABC news. I had no problem answering his questions as long as he did not ask for my social security number, birth date or bank account number.

I was getting ready to leave on an Alaskan cruise so I used my time in Seattle to answer Dr. Tokin’s interview questions. I’ve been interviewed before by national news media including a telephone interview while I was at a conference in Boston. I know that national media will interview several people and then choose one or two of the stories to include in the article. When I read the previous article, my interview was not included. This time, I just didn’t mention the interview and thought I’d wait to see if Jim’s story was included in the article.

My first day at work after my cruise, I heard from my son.

“Did you know there’s an article online about dad?” He went on to tell me he was browsing the news on his cell phone when he saw an Alzheimer’s article. He started reading it and realized the Jim Fisher in the article was his dad.

“Dr. Tokin interviewed me before I left on the cruise,” I said. “He was going to send me a link to the article when it was published.”  I looked at the news feed on my phone and the article was indeed in the health section.

A few hours later, I received an email from Dr. Tokin with the link to the article. By then, the article had been shared on Facebook.

This morning, I went in to read some of the news from the conference and one of the articles is “New Drugs Aimed at Ending Alzheimer’s Decline.”  This in Dr. Tokin’s article. He used Jim’s story to personalize an article on new drug treatments. Two of the drugs targeting beta-amyloid, Eli Lily’s solenezumab and Pfizer’s bapineuzamab, are in Phase III clinical trials. 

The Alzheimer’s Association’s International Conference gives the world a chance to learn about research targeting 2025 as the date to find a cure for Alzheimer’s. Scientists try many approaches to diagnosing Alzheimer’s early and developing therapies to target the hallmarks of Alzheimer’s—beta amyloid plaques and tau tangles.

As the week unfolds, we will learn more about new studies like the one that shows a change in walking can indicate Alzheimer’s disease before cognitive symptoms appear. People with undiagnosed Alzheimer’s disease may begin to walk slower and take shorter steps. The interesting thing about gait is that some people performed well on the clinical tests, but at home, family members observed that their loved one walked much slower. Walking speed, like other symptoms of dementia, rely on family observations as a key component of making a diagnosis.

When you know someone well, you notice things about them that doctors don’t. A ten-minute exam might miss many of the symptoms of serious brain disorders. When Jim developed dementia, it was my observations of changes in his behavior and skills that convinced the doctor that it was more than depression.

We lost Jim more than seven years ago, but he is not forgotten by the family that loved him. Jim would have been pleased to know that his story provides an illustration of hope for the 5.4 million Americans with Alzheimer’s.

“New Drugs Aimed at Ending Alzheimer’s Decline.”  

copyright © July 2012 Linda Fisher

Tuesday, July 3, 2012

Lunch at Perkins

I met Carolyn outside of Perkins for a late lunch. “There’s my sister’s car, so she is already here,” she said.

Just inside the door, Carolyn hugged stood a pretty dark-eyed woman, so I knew this was her sister Julia. We admired the pies while we waited to be seated. How well this lunch would go remained to be seen.

I was about to meet a woman who was beginning the Alzheimer’s journey. Julia’s husband has early onset dementia, and she is just beginning to understand what a complex and emotional road lies ahead.

We studied the menu and had pleasant, light conversation just like any three women without any serious cares. We contemplated the merits of breakfast versus lunch. As usual, I chose the tilapia and Julia followed suit. Carolyn easily chose breakfast.

Julia pulled up pictures on her phone of her beautiful daughters and grandchildren. Her eyes sparkled with love and delight as she talked about her family.

Eventually, the talk turned to Alzheimer’s, the elephant in the room we had been avoiding. I wanted Julia to lead the conversation.

She talked about how everyone seemed to have a solution. She has already read up on the scary disease and knows how limited the choices are and how unpredictable day to day can be.

The things she was talking about reminded me of a man who interrupted a presentation I was in the process of giving to announce he had cured his wife of Alzheimer’s. He had given her some kind of concoction that, according to him, was a miracle cure.

“How is she doing?” I asked.

“Oh, she passed away, but she didn’t have Alzheimer’s anymore.”

I didn’t relate this story to Julia, but I shared others. We talked about medication. Her husband is using an Exelon patch. I told her that none of the Alzheimer’s medications worked for Jim and that he had side effects. We talked about how some medications work the opposite on someone with dementia. A prescription used to calm most people may hype up someone with Alzheimer’s. Julia had a good grasp of how important it is to tweak medications and monitor them.

“I’m confident that I can take care of him no matter what happens physically,” she said. “What I’m not sure about is how I can handle the grief.” Her eyes now sparkled with unshed tears.

“Grief is the hardest part,” I said. “There is no defined beginning and it just goes on and on.” There wasn’t any way to sugar coat her emotional future, and I wouldn’t insult her by saying it would get better.

I was impressed that Julia did understand even at this early stage what her biggest challenge was going to be. Initially, most of us worry more about the physical challenges of Alzheimer’s—behavior, incontinence, feeding, bathing—instead of the emotional upheaval of losing someone we love one memory at a time.

Julia does has the same important advantage that I had. She has family to love her and support her throughout the challenging days ahead. Julia doesn’t need a lot of unsolicited advice from well-meaning friends or acquaintances. She will get her medical advice from a trusted physician, and her emotional support from her family and close friends.

We met as strangers and parted as women who had bonded. With the love and support of her sister and the rest of her family, she will make it through the journey. As I hugged her goodbye, I’m confident that she is a strong, grounded woman who will meet the challenges ahead of her.

Copyright © July 2012 by L.S. Fisher