Jun 072013
 

Research into the causes and potential treatments for Alzheimer’s disease has been as complicated as the disease itself.  Patti Davis alzheimer's run, Alzheimer's charityborrowed the phrase “The Long Goodbye” in describing the decline of her presidential father, and for good reason:  This horrible affliction robs families of their dearest members with agonizing progression and frustration.  And for researchers, it has for over a century hidden behind a shroud of mystery that is due partly to the complex nature of the brain itself.  I know this because it is my life’s work.

President Obama recently announced a funding initiative that will direct $100 million toward mapping the functional connectivity of the brain.  A small fraction of this money will be applied directly to Alzheimer’s itself, but the general insights that arise from this effort may also help indirectly by illuminating the tapestry of neural threads that Alzheimer’s disease unravels.

Despite the large number of possibilities that scientists have to consider when postulating the means by which Alzheimer’s disease starts and progresses, our approach must be pared down and methodical.  A series of experiments must alter only a single parameter at a time, or the results will be a meaningless confusion of possibilities that still remain.  Though some might find this tedious, to most of us it is satisfying due to the power of its simplicity.  If you march one step at a time, you know you’re making progress and not spinning in circles like a whirling dervish.

I suppose it is the analogy of this scientific plodding that strengthened my connection to Jack Fussell, who is running across America in a personal quest to raise awareness and funds for Alzheimer’s disease. In his cross-continent trek, the 62-year-old runner seems to have boiled down his contribution to this effort in one comprehensible and consistent action: step west. There will be some 7 million steps in his journey, but he’s taking them one at a time and always toward the setting sun.  (Well, nearly always:  He ran circles around my hometown of Conway, Arkansas, after arriving there one hot afternoon, simply because he had the time and there were folks whom he’d never meet by sitting still.)

“When I don’t know what to do, I run.  So I run a lot,” he told me that the day I met him.  It struck me as the sort of wise humor for which Will Rogers became famous.  It’s as simple as a mantra or a religious chant.  It’s also self-deprecating, and Jack is nothing if not that.  But no one who hears of his story can belittle what he’s doing.  Because what he is doing is something!  That is the true wisdom of his endeavor.  Jack searched his soul for the contribution he should make, and he refused to be stymied by the number of choices available or the complexity of the problem he’s fighting.  He found strength in the decisive wisdom of doing something; one thing that he does very well.

Yes, it seems simple:  put one foot in front of the other.  But the path this process has carried Jack down has included vistas—sights and insights—that he never anticipated.  Another thing he told me the first day I met him was that he had discovered on this journey the satisfaction of connecting second and third parties who probably never would have encountered one another if they weren’t interacting with him.  Jack senses that many of these connections will be lasting and productive ones.

Another insight that has been reinforced, if not discovered outright, on this trip is one that Jack and I talked about at some length the last night he spent at my house.  Actions aren’t just louder than words, they’re essential for words!  And for thoughts and feelings and ideas and convictions.  Psychologists, gurus, personal trainers, social activists, and ministers advise us:  Act out the future you want to have.  Religious rituals reinforce faith.  Social engagement—even if forced, at first—can raise a tormented soul out of the mire of depression.  Re-enacting the days of courtship can reignite the spark of romance in a stale marriage.  It is never enough to sit around and think of what one might do… what one should do.  In the end, you cannot know that.  The benefits of taking action can be surprising, but the stagnation of inaction is quite predictable.  In the research lab, all the theorizing in the world is meaningless without performing the experiments to test the theories.  And all the good intentions of all those folks out there who sit idly by and wish Alzheimer’s could be defeated (by somebody else) will unfortunately pave a hellish road that every caregiver must endure along the route of “the long goodbye.”

But there is at least one man out there—literally out there, on the road somewhere—who refused to sit idly by.  He is a man who puts on a pair of running shoes and harnesses up his three-wheeled mule (a jogging stroller he has named “Wilson”) even on the mornings when the last thing in the world he wants to do is run.  He is persistent.  He is methodical.  And he will be effective.  Because he chose to practice the science of what he could.  To do what he could. To do something.

About the Blog Author: Steven Barger, Ph.D., is a professor in the Departments of Geriatrics, Neurobiology & Developmental Sciences, and Internal Medicine, at University of Arkansas for Medical Sciences. His current research focuses on the interactions between proteins implicated in the development of Alzheimer’s disease. In his dedication to end Alzheimer’s, he rode in the Alzheimer’s Association Breakthrough Ride and has served as a reviewer for Alzheimer’s Association grant program.

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  6 Responses to “Ending Alzheimer’s One Step at a Time”

  1. Amazing Man!

  2. BRAVO!!! This is such a wonderful thing. I have my own theories about ALZ being misdiagnosed (another dilemma about any dis-ease, including ALZ), I believe that grotesque multiple medications create side effects that mimic ALZ because this over medication and the contra indication of medicines that should never be taken together… causes its own brain damage. :(

    • Amen to that. My friend, 65 years old was diagnosed 5 years ago with dementia/Alzheimer's which we saw early signs of prior to that time. She has been on anti-depressants and Xanax for over 25 years and drank alcohol on a regular basis. All this under the care of one doctor who saw no problem prescribing Xanax long term, never insisting she seek other means of dealing with anxiety and depression.

    • My mother died of ALZ at the age of 87 and now my eldest sister (age 83) is in the advanced stages of this disease. She has been on some medication, which has slowed down the disease. My sister lives in Germany and I in Australia) I live in fear, when I can't remember "things" sometimes etc. that I too might next to contract this disease. I do understand what you say about "misdiagnosed" and the medication prescribed being another problem. I wish you well Roberta !

  3. There's a few of us in Newport South Wales UK who are going to do a " Bridge walk" across the five bridges in our city on Sunday 23rd June. Hope to raise awareness, and offer help and support to some friends who are carers and sufferers.
    It'll be a good old fashioned day out. Exercise, fresh air and a few laughs ;0) Looking forward to it!

  4. Interesting (I have been diagnosed – correctly – as "early Alzheimer's"), but am amazed that more research does not appear to be concerned with examining the possibility of predictable signs of Alzheimer's. As a retired educational psychologist, I feel fairly confident that early signs might well be possible using, or at least being based on, some psychological tests which are already in existence, such as the five – make that three minute – test which my doctor's nurse administered to me.

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