Sunday, April 27, 2008

On a Slow Train to Chicago

The whistle makes a soothing mournful sound in the coach section of Amtrak. The rain snakes across the windows blurring the trees with their tease of green. Water pools in every dip of land from the April rain that has been falling for the past two days. Miniature lakes are surrounded by grassy meadows. The Missouri River is grey and turbulent from the flooding streams. A barge pushes a load beneath the grey metal structure of a bridge.

The leisurely train ride affords a chance for people, like me, who take advantage of every quiet moment, to write. My laptop fits nicely on the tray and an electrical outlet lets me work long after a battery would shut down. I spend most of the twelve hour ride from Sedalia to Chicago working on a new book, Writing as Therapy: Rocks and Pebbles.

As the train passes through small towns and past St. Louis, I think about how this leisurely mode of travel would have suited Jim. He inherited wanderlust from his parents’ vagabond lifestyle and was happiest on the road. Jim always said the best part of any journey was traveling down the highway. He was just as happy throwing a sleeping bag on the ground as he was staying in a motel. Jim preferred travel by car much more than flying, and I know he would have enjoyed the train ride.

Although the train outpaces the trucks on the interstate, train travel is not for those a tight deadline or people with no patience. Sometimes the train pulls to a side track and waits for a freight train to pass. Or, may even back up and hook onto a train having engine trouble and pull them along to their next stop. Sometimes cranky children cry or someone shouts into his cell phone and disturbs the quiet. Most of the time, it is peaceful and the seats are comfortable.

Something about the train makes me long for the days when Jim taught me to think about the journey and not just the destination. When the whistle blows, the sound makes me lonesome for those youthful days. The rain weeps, but I smile in remembrance of our journeys.

Wednesday, April 9, 2008

L. S. Fisher, Alzheimer's Anthology: Book Signing at Barnes and Noble, Columbia, MO, April 13

Linda Fisher, Author
Alzheimer’s Anthology of Unconditional Love

Invites YOU to a Book Signing

Barnes and Noble
Columbia, MO
Sunday, April 13
1:30 – 3:30 PM

A Voice for Missourians with Alzheimer’s

In Missouri, an estimated 110,000 people have Alzheimer’s or a related disorder. Caregivers, family, and friends bring the number of Missourians directly impacted by the disease to more than a half-million.

Alzheimer’s had never affected anyone close to me until my husband Jim began his downward spiral into the abyss of dementia. A diagnosis of Alzheimer’s is frightening and the prognosis is devastating. Alzheimer’s has remained a mystery, the cure illusive.

How could Jim have dementia when he was only 49 years old? The concept was unfathomable that small mental glitches could escalate into massive cell death that would erase my husband’s memory and skills. Jim once repaired our van with a piece of baling wire, but two years into the disease he could not focus enough to screw in a light bulb, twisting it first one way and then another.

Jim was a talented singer and musician who could play a multitude of stringed instruments. Eventually he could not play his guitar, and his voice was stilled by aphasia.

Alzheimer's Anthology of Unconditional Love is a collection of stories that give a voice to Missourians who have experienced this life altering disease. When our loved one has dementia, we embark upon an unwilling journey into an uncharted world. It is the death of our dreams, our plans, and the birth of unconditional love. Alzheimer’s brings about role reversals as we struggle to provide care for people who once took care of us.

The stories in the collection capture the effect Alzheimer’s has on caregivers, sons, daughters, in-laws, children, grandchildren, and healthcare workers. The writers range from a Pulitzer Prize nominee to unpublished authors.

Tracy Mobley, diagnosed at 38, wrote a story filled with humor and laced with the tragedy Alzheimer’s has brought to her family. Charles Schneider describes the shock of being diagnosed with early onset Alzheimer’s.

For those beginning the journey, these true slice-of-life stories will help them realize they are not alone. We all walk together, holding hands, giving each other hugs and encouragement.

I look forward to seeing you April 13 at the Columbia Barnes and Noble Bookstore.

Linda Fisher

Saturday, April 5, 2008

Everybody’s Talking

I visited my sister-in-law in the hospital yesterday. I left her room and outside the door a lady sat on a bench, cell phone to her ear carrying on a lively conversation. Around the corner through a patient’s open door, I saw an elderly woman’s visitor talking into her cell phone. About half the people you see in Wal-Mart are talking on cell phones. With more than 219 million active cell phones in the United States, that’s a lot of conversation.

Cell phones are everywhere. Ringtones interrupt sermons, speeches, training, work, corporate board meetings, live theatre, movies, and funerals as people forget to turn off their electronic devices. I was at a conference one time where the announcement was made, “If your cell phone rings, you pay $5.” The speaker was the first person to pay.

Cell phone plans provide an economical way to stay in touch with family and friends. With free nights and weekends it is easier to communicate with everyone you love.

When you talk to someone with Alzheimer’s, phone conversations can be deceptive. Often people with dementia continue to carry on polite conversation and give yes and no answers. It is frustrating for caregivers and family who live close by when the long distance relatives say, “Dad sounds fine to me. I think you are overreacting.”

Early in Jim’s disease, he always forgot to relay phone messages, so we installed caller ID. When he talked on the phone, he could make polite conversation. Even people who knew him well might not notice anything strange about his conversation. He interjected “I’m just fine,” “You don’t say?” and other polite phrases at appropriate intervals. After he hung up the phone, I would ask who he had been talking to, and his response was usually, “I have no idea” or “You know them.”

Our satellite TV account was in Jim’s name, and they called constantly with offers to upgrade our package. Jim always said yes, and when I called to cancel the expensive channels, they didn’t want to talk to me. Jim died three years ago, and I still can’t get his name off the account but they finally added mine.

I frequently receive phone calls offering me truck driving jobs. Just a few days ago an upbeat male voice said, “We just reviewed your resume and have an excellent truck driving job for you.” I did not submit a resume, but I am listed in the city directory with an occupation of driver. I’m pretty sure that information came from Jim, because after he could no longer drive, he referred to me as his “driver.”

While I worked on my blog post today, I received a phone call from Karen Waterhouse who plans to submit a story for the Early Onset Project. Karen has benefited from a combination of traditional medical treatment and a combination of herbs. She told me about the 22nd Annual Alzheimer’s and Related Dementia Wisconsin State Conference she will be attending in May.

Karen called because she could not find my email address. Just as we ended our conversation, she said, “I have a plan on my cell phone so it doesn’t cost me to call on weekends.”

To hear Karen’s voice, feel her energy and optimism, made my day. I’m so thankful that I have gotten to know so many people with early onset dementia. These personal friends keep me motivated to continue advocating for a cure for Alzheimer’s in a way that statistics never could.

The ability to communicate with family and friends needs to be weighed against the cacophony of disruptive ringing cell phones. So, if I walk past you in Wal-Mart with my cell phone to my ear, I just might be involved in an important conversation.