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Wednesday, April 29, 2009

Talking with James

A couple of years ago, I sat down and talked with my friend James about his life before Alzheimer's.

James used to be the Director of IT for a Fortune 500 company. At any given time, he was responsible for twenty-five to thirty projects on a global basis, he received over a hundred emails daily that required responses, he attended six to ten meetings each day, and he worked anywhere from sixty-five to one-hundred hours each week. He likened his job to the corporate version of an air traffic controller. A self-proclaimed adrenaline junkie, he thrived in this kind of intense environment and was consistently ranked in the top ten percent of their 70,000-person workforce.

He rattled off descriptions of his work life with effortless enthusiasm. He told me that it was a really exciting time in his life, that his work was great and fabulous and that he loved it. I was undoubtedly convinced.

And then his Alzheimer’s symptoms began to surface. James’ first and most salient symptom was exactly what we all think of when we think of Alzheimer’s Disease –forgetting. But James was only 43 years old at the time. Forgetting doesn’t wave its arms and scream Alzheimer’s at the age of 43. Both James and his primary care doctor blamed his high-pressured job. He needed to slow down. Relax. His doctor thought he might be depressed. James didn’t think so. He had a lot of energy, and aside from forgetting things, he felt like himself. But he trusted his doctor and went on Wellbutrin.

The forgetting continued.

What kinds of things was James forgetting? He forgot to go to meetings, that there ever was a meeting, that it was he who’d actually called the meeting, people’s names, people he’d known for years, where he’d placed needed documents.

What did this forgetting feel like?

“I think of my mind as a desk, and all the papers on it are my memories, all the things I’m keeping track of. It’s as if someone sneaks up when I’m not looking and takes random pieces of paper off my desk. When I turn back around and look, it’s as if those pieces of paper never existed. I won’t even realize they’re gone until whatever they’re needed for comes up. Then I’ll have no idea where they are. They’re gone. That’s what was happening with my memories. I wouldn’t realize my memories were gone, and I would maybe even argue that they weren’t gone until they were needed, and then I wouldn’t have anything to draw on.

I also lost my ability to multitask. When you multitask, you keep information in place holders in your mind. You’re using your short-term memory. I think of it like an air traffic controller, keeping track of where all the planes are all the time. Even when you’re focusing on one particular plane, you have to keep the other planes in mind. Part of what made me successful as a director was my ability to work on twenty-five to thirty projects at once. I was losing sight of meetings, documents, conversations, the existence of entire projects.”

His planes were starting to collide, wander off the radar screen, and hit the ground.

“I also lost my sense of time. Two hours would feel like twenty minutes.”

This is also a symptom of forgetting. The way we perceive the passage of time requires the ability to string together memories of what happened between a time ‘then’ and another time ‘now.’ If memories are missing, stolen off the mental desk, this tends to shrink that time period.

With all this forgetting at a job that required a high level of remembering, James was beginning to fail at work. I wondered if maybe home life, where he didn’t have the same kinds of multitasking demands placed on him, was more forgiving.

What was happening at home?

“I would get home and be just exhausted. I’d hardly be able to speak because I was so tired. I think it was because my mind was working so hard to get through the day at work, that by the time I got home, my mind literally had nothing left. I would sit there and be blank for a while. It had to be frustrating for my wife, to see me spending all my energy and passion at work and having nothing left at home. That was really difficult on my family, wondering why Dad’s disengaged, why Dad doesn’t want to do anything. To them, it probably looked like depression. But it turns out it was something else.”

After an arduous journey through a series of medical tests that excluded every other possible known cause of forgetting, James was ultimately diagnosed with “the only rock left on the table.” Alzheimer’s Disease. James was forty-five years old.


Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

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3 Comments:

At May 20, 2009 at 8:15 PM , Anonymous Anonymous said...

James thanks for sharing your story. I am 42 and concerned that I might me following in your footsteps. At this point I am not sure if its fear of.. or real. I regret allowing so much professional stress into my life. Although I am still very energetic, meetings and follow-up tasks are slipping away. It started with me forgetting my Passwords... I would describe myself as very sharp working mom with a unique ability to juggle lots of balls in the air. That seems to be more changing for me and I have to wonder if stress plays a role in this disease? I too rasied concern with my doctor and they said it could be stress related. To me honest the stress level is high but always has been. When I get the courage I am going to visit the memory clinic at DUKE.

 
At June 16, 2009 at 8:17 AM , Anonymous Anonymous said...

Is there a vitamin that is recommended to help rebuild cells so our memory can stay intake or even improve?

 
At June 23, 2009 at 12:22 AM , Blogger joann said...

yes there is a vitamin (supplement) called memoryXL in clinical trials the last two years. My husband is taking this supplement with excellent results. His neurologist checked the company and supplement and stated it would be okay to take the supplement along with aricept each day. google memoryXl for information

 

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The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.


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