Every six months we review data gathered from HDDW trial participants. While doing this review I also read a book about Admiral James Stockdale who had been a Vietnam prisoner of war, and I drew a connection between the experiences of HDDW participants and the wisdom that has come to be called the Stockdale Paradox.
The Stockdale Paradox James Stockdale was the highest ranking military officer captured during the Vietnam War. He survived eight years of imprisonment and torture before gaining his freedom near the end of the war. The paradox bearing his name refers to the practices he used and the different characteristics he observed in prisoners of war who survived, and those who did not.
After his release, Stockdale was asked how he dealt with his eight years of torture when he could not have known he'd survive. He said that two things were most important. First, "I never lost faith in the end of the story... I never doubted . . . that I would get out". And second, "Never confuse faith that you will prevail in the end with the discipline to confront the most brutal facts of your current reality, whatever they might be".
When asked who didn't make it out, he said, "The optimists. They were the ones who said 'we're going to be out by Christmas'. And Christmas would come, and Christmas would go. Then they'd say, 'we're going to be out by Easter', And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart."
Although they could not have known that they would survive, survivors were optimistic and realistic. They had to believe that working towards survival was worthwhile and be brutally honest with themselves about their bleak situation.
The Stockdale-HD Analogy Stockdale's ordeal can be compared to this generation of HD people who are held prisoner by Huntington's Disease. With drugs at various stages in the development pipeline, this generation has a chance of rescue. But like Stockdale, we don't know that we'll survive long enough to see breakthrough treatments.
What might Stockdale's experience teach us? It suggests that though there is no certainty, there may be ways of improving our chances of survival. To be able to work at it day after day, we need to believe that exercise, social contact, healthy diet, and positive attitude will help. Like HDDW participants, we might also believe that one or another experimental treatment that is available now might help. But Stockdale's experience also teaches us not to be overly optimistic, that we need to face the reality that present interventions and treatments for Huntington's are limited. We must accept that none of these things are magic bullets (like getting home by Christmas), or we too will die of broken hearts.
Proactive Realism I call what we are doing at HDDW proactive realism. We believe that even small steps toward treatment are worth the effort. HDDW participants and families know the reality of Huntington's and present treatments: no great treatment is available. But most have faith that one or another of the agents used in the trials might improve their chances of surviving better and longer. It gives them the energy to continue the work of the trials.
HDDW Update at 2½ Years Results were analyzed for twenty-five participants who have completed between 2 and 2½ years of the HDDW trial. For purposes of reporting, participants were divided into two groups: earlier stage disease and later stage disease.
Early to Mid Stage Disease Five participants in this category have consistently shown improved test measures over this entire time period. Four others have demonstrated stable test measures.
Eight participants in this category have scores that declined in either motor or cognitive scores during the time period of 2 to 2½ years. Three of these eight admitted to non-compliance with trial agents. The other five declined despite compliance. In each of these cases there was either psychiatric or other significant emotional stress occurring during the same time period.
Late Stage Disease Of the eight participants in this category, five have now declined. Of these, four had demonstrated stability at last analysis. In these situations, worsening was associated with either the stress of intercurrent illness or surgery.
Take Home Points At least with our small number of patients, the HDDW combination treatment has been associated with improved or stable test scores in 9 out of 17 of those with early to mid disease stage, and 3 out of 8 with later disease stage. This is certainly more than would be expected in a cohort of this size. Of those who declined, our trial method can't discern whether the agents slowed rate of progression, or had no effect at all.
There are also observations on those who worsened that I believe have importance. Rapid motor decline was observed in late stage participants (and one earlier stage) who became ill with other medical problems or had surgery. This suggests that there should be careful and aggressive treatment of other medical conditions to minimize adverse effect on HD disease progression. Decline (mostly cognitive) was also observed at the time of significant emotional stress. This suggests that there should be early treatment with drugs that can minimize reaction to stressors.
The Report Stockdale J, Stockdale S. In Love and War: The Story of a Family's Ordeal and Sacrifice During the Vietnam Years. Amazon Page