Presentations

Sunday, August 28, 2011

Women of Courage Facing Early Onset Dementia

The sports world was shocked by news that 59-year old Coach Pat Summitt, Tennessee Women’s basketball coach, has an Alzheimer’s type of dementia. The news wasn’t uncovered through investigative reporting—the coach made the announcement herself.

Coach Summitt has met her Alzheimer’s challenge head on and fighting back. She knows this disease is not a game and nothing short of a miracle will allow her to win. Still, she has faced the disease with courage and announced that she will continue to coach as long as she can.

With a staff of veteran coaches and a supportive administration, Coach Summitt may be in the game for a long time. Remaining active and involved is the coach’s way of focusing on what she can do rather than what she can’t.

While the coach made national news, on a more personal level I heard from a friend of mine has always shown remarkable courage and faith. She developed frontotemporal dementia (FTD) while she was in her 30s.

After our initial polite greetings, I asked her how things were going.

“Taking it one day at a time,” she wrote on Facebook.

She went on to tell me that she and her husband had separated. This was sad and surprising news because he had always been so supportive and loving toward her. She goes on to tell me that her teenage son feels responsible for making sure she is all right.

Times are tough for them, and she had tried to find a part-time job to give her something to do and to supplement their income. She had already been fired from two jobs. She couldn’t remember all the steps to putting hamburgers together at the fast food place. She worked as a night clerk at a hotel but couldn’t keep anything straight so she was fired from that job too. She has an interview for a third job on Monday.

My friend had her life turned upside down when she was diagnosed with FTD and now with her husband leaving, her world has flipped again. Unfortunately, rather than making the world right side up for her, it is even more out of kilter.

I think about how her husband must have felt to walk away from her. It would be easy to say what he did was unforgivable and let it go at that. But diseases like Alzheimer’s or FTD do not just affect the person with the disease. Relationships are collateral damage. I do not condone what he did, but I do understand how year after year of caregiving takes its toll. I’ve seen caregivers who sacrificed any semblance of a normal life for a decade or more, and some who sacrificed life itself and died before the person with dementia.

Even the best of us are only human. Loving caregivers do what they can for as long as they can. It takes determination and courage to hang in there day after day until the job is done. No one except a primary caregiver knows how hard that is, and I suspect that those caregivers would be the most adamant that my friend’s husband deserves to be eternally punished for his neglect. After all, he abandoned his wife in her time of need, and abdicated his responsibility to a teenager.

As for my friend, she faces the future with optimism and courage. For now, she will be satisfied with a part-time job. She has her faith and a son who loves her.

I don’t understand why life has dealt Pat Summitt and my friend these terrible blows, but I know they are women of courage, an inspiration, and an example for all of us.

Copyright © August 2011 L. S. Fisher
http://earlyonset.blogspot.com

Friday, August 19, 2011

Planet of the Apes: Alzheimer’s Cure Gone Wild

Every now and then, I just have to go see a movie. A few weeks ago I saw The Smurfs with my grandchildren and daughter-in-law. I can relate to that show because I used to watch The Smurfs on TV with my kids when they were little. Jim and I even used the “Not far now” description when we were traveling, although sometimes our destination was still far, far away.

I really wanted to see something that wasn’t animated and thought Rise of the Planet of the Apes looked interesting. My memories of the Planet of the Apes original movie were fuzzy, but I remembered the story was intriguing and that the apes were more human than humans.

It didn’t take long to realize Alzheimer’s played a key role in the Rise of the Planet of the Apes. Will, a researcher, discovered a cure for Alzheimer’s and the apes it was tested on became highly intelligent. Like too many miracle drugs, the fictional ALZ112 had deadly side effects. Apes became highly intelligent and human died from a virus.

The science fiction movie reflects how much our fears today have changed since the 60s when the original Planet of the Apes aired. In the new story, human holocaust is caused by a pandemic rather than a nuclear war. We are all afraid of getting a terrible disease without a cure.

Oh, wait. Isn’t that what Alzheimer’s is today? More than five million Americans are living with a disease that has no cure or effective treatment.

Although the apes were the focus of the movie, Will’s dad was a key part too. His dad was the compelling reason Will sought a cure for Alzheimer’s.

I imagine some people who would never go to see an “Alzheimer’s” movie might have seen their first glimpse of some of the challenges caregiver’s face. Will’s loving exasperation with his dad is  part of daily life for caregivers as they do what they can to care for loved ones.

The one thing that happened in this movie that hasn’t happened yet in real life was the interlude when the drug temporarily “cured” Alzheimer’s. What would it be like to wake up one morning and find your loved one had returned to normal? That would indeed be a day for celebration!

Will we ever see that day? Dedicated scientists have found miracle cures for other diseases. I carry a scar on my arm from a smallpox immunization. My children don’t have the scar because by the time they were old enough, it was no longer necessary. Smallpox was virtually unheard of during their childhood. Polio was another disease I remember being warned about when I was young.

Both of these diseases were challenging, but cures were found. That is what we need for Alzheimer’s—and the sooner the better. Too many people have journeyed down a road with a dead end. The warning signs are there, but with no way to go except forward, the destination is the same for everyone.

I understand Will’s desperation to stop the disease from taking his dad. I’ve felt that desperation, and I’ve seen it in the eyes of other family members when they hear the diagnosis is Alzheimer’s. Finding a cure seems to be moving in slow motion while we fast forward to the scary parts, and all we really want is a happier ending than we’ve been given. With all the medical advances of the past twenty years, or even the past five years, why can’t Alzheimer’s be cured?

It’s like the key to unlock the mystery of Alzheimer’s is buried in a mountain of keys that all look alike. It seems an impossible task to find the correct key and insert it into the lock. But when that perfect key is found, the lock will spring open.

The cure for Alzheimer’s isn’t just possible in a science fiction movie. The right key is there, it’s just waiting to be found.

Copyright © August 2011 L. S. Fisher
http://earlyonset.blospot.com/

Saturday, August 13, 2011

Snapshot

I worked at the Missouri State Fair this year taking pictures in the Cooperative building. I’ve had this job before and always enjoyed handing over this personal souvenir of the fair. The pictures are taken in front of a backdrop with the year, a life-sized Buddy Bear, and the words “Fun at the Fair.” I snapped the pictures as soon as the babies stopped crying and the adults quit scowling. Another cooperative employee pulled them up on a computer screen and sent them to the printer.

Part of the fun is seeing the priceless expression on a newbie’s faces when he realizes the picture is free. “You aren’t going to get my phone number or email account number to pressure me to buy something else?” one man asked.

“No, we aren’t even going to ask your name,” I replied. “We just take a picture and give it to you.”

Having their picture taken is on some people’s “must do at the fair” list. They walk through the door and immediately get in line to have their picture taken. One man said, “We have fifteen of these on our refrigerator—one taken each year.” Another man said, “This is our annual family picture.” A woman said with surprise in her voice when she looked at the picture of her daughter, “She’s taller than Buddy Bear now!”

A lot of us have annual events that mark the passage of time. It may be a family reunion, a holiday, or the State Fair. It’s amazing to compare snapshots year-to-year and see how we have changed. It’s always a little bittersweet when you look at your children, or grandchildren, and visually time travel the distance from one year to the next in a veritable blink of an eye.

Pictures used to be harder to take and people my age didn’t grow up in front of digital cameras and cell phones that send pictures to the Internet in a few clicks. We had to buy rolls of film with 12 or 24 pictures on them. We snapped away and then sent the film off to be developed. So we paid for film, paid for photo development, and then threw away about half of the pictures because they didn’t “take.” The good thing about the old-fashioned way is we ended up with print photos. Now, I take hundreds of pictures and store them on my computer, and seldom have print copies of them.

Snapshots are a pictorial history of our lives. They can help us retrieve memories that are filed within the deepest recesses of our brains. Sometimes a picture can remind us of how the sun felt on our skin, or how the breeze smelled. Snapshots are a way of time travel without using any mythical machine.

When Jim went into the nursing home, we surrounded him with photos of family. He had several small photo albums to remind him of better times. Occasionally, he would look at a photo and say the names of the people in the pictures.

I brought pictures of Jim on my advocacy trips to Washington DC. The first picture in my small album was of Jim dressed in his western shirt, Levis, and cowboy hat before dementia changed him. The second picture was of the early stages, what I called his eccentric stage, when he wore a denim jacket decorated with pins and his battered nametag from Branson. In the middle stages, the picture was taken at the park and he wore a Kansas City Chief’s shirt and sweatpants. His eyes have a blank look. Then in the later stages, the picture showed Jim in the nursing home hallway sitting in his merry walker.

Now, most of the snapshots are put away, and I only look at them occasionally with smiles and, sometimes, tears. The pictures are a one-dimensional view of a full and rich lifetime of memories.

Special events roll around annually and in the meantime, we will snap away to fill our computers and photo albums with people we love and places we visit. Life goes on and we continue to take pictures and record today for tomorrow’s history.

Copyright © L. S. Fisher August 2011
http://earlyonset.blogspot.com/