Lorenzo’s Legacy

24 02 2010

The opportunity to hear Nick Nolte attempt an Italian accent is not a good reason to see Lorenzo’s Oil.

But that’s not to say the movie is not worth watching.

The 1992 film, also starring Susan Sarandon, recounts the life of Lorenzo Odone, who was diagnosed with adrenoleukodystrophy (ALD) at the age of five (or six, depending on your source.)  Doctors told his parents he would likely die within two years.  The movie explores the parents’ attempts to come up with a viable and effective treatment option for their son despite the fact that they had no medical background.

They hit upon a specially formulated oil that, when added to his diet, apparently halted the progression of the disease.  They had very limited success repairing the damage that had already been done.

Lorenzo died in 2008 one day after his thirtieth birthday.

Like multiple sclerosis, ALD does its damage by attacking myelin, the fatty tissue that surrounds and protects nerves, enabling them to conduct messages from the brain to other parts of the body.

So it stands to reason that, as an MS patient, I would be curious about the story.  Yet, I had never seen it, partly because I generally steer clear of sad movies, and I knew enough of this story to predict that it was a four-Kleenex-tale.

But also, regarding this research, there’s a part of me that want to bury my head in the sand and say “don’t bother me till you have the right answer.”  With MS, I’m tired of the journey, the dead ends, the wrong turns.  Go away till you can show me the destination.

But when my husband, knowing nothing about the story’s relation to MS, loaded it up to watch, I decided I might as well check it out.

The movie poses more questions than it answers:

  1. How does one reconcile the competing motivations of doctors, who focus on the advancement of medical science, drug companies, who focus on the almighty dollar, and families, who focus on individual patients?
  2. How does one determine the wishes of patients who have lost the ability to communicate?
  3. What is the role of human guinea pigs in medicine?
  4. How does one balance “right to know” with “false hope?”
  5. Is there a point at which due diligence in caring for loved ones becomes an unhealthy obsession?

The movie suggests that in 1992 Lorenzo’s oil was well on its way to revolutionizing the treatment of ALD.  A current web search suggests that, eighteen years later, the reality is much more complicated.

Trivia: I’m not sure what the current status is, but during that last part of Lorenzo’s life, his family lived in MY NEIGHBORHOOD.  Their name is in the neighborhood directory.  His mom and dad could ride up to the local Blockbuster and rent the movie depicting their life.  Lorenzo outlived his mother, who died in 2000 of cancer.

After the family discovered the oil to counteract the imbalance in Lorenzo’s blood, they turned their attention to repairing the damaged myelin.  That effort continues today through The Myelin Project.



One response

24 02 2010
Mary Lee

Morning! Your thoughts led me to thinking about dad’s alzheimers in wondering what their wishes are and maybe my obsession wiith caring for dad. On the other hand, it seems to bring something to both of us…..and I think the tone of voice is as important as anything I say! But again, I love reading your thoughts.

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