Did you hear about the cure for Parkinson’s? The news came out on the Internet just last week, and only yesterday I got an email telling me it’s true. It’s expensive, and unfortunately it’s not covered by insurance, but luckily I also received an email at almost the same time from a Nigerian prince that will help me pay for the treatment. The prince is going to share his fortune with me, and all he needs is a little personal information and my bank account number. It seems like a good deal, and it’s worth the risk for a share of $347 million. What could go wrong?
There have always been those willing to prey on the hopes and fears of people in distress and take advantage. It’s sometimes difficult to separate the scams from the truth, especially when faced with a daunting challenge like living with Parkinson’s disease. It’s an intensely uncomfortable and distressing disease that not only causes physical deterioration, but can also degrade our judgment and decision-making capability. Just when we need it most, our ability to filter out the nonsense declines, and grasping at straws seems more and more like the thing to do.
There is no cure for Parkinson’s disease. There is ongoing research, and reason to hope for a cure, but there’s no cure on the horizon. Instead, there are excellent medical, surgical, and lifestyle interventions that, although they don’t cure the disease, vastly improve the quality of our lives by reducing the impact of Parkinson’s symptoms. But there is not yet a cure, and anyone who tells you otherwise is either misinformed or selling something that starts with a B and ends with an S.
Someday there may be a cure – when that day comes, there will be rejoicing in the streets by people with Parkinson’s and those who love us and provide for our care. But until that day, we have to get out of bed everyday, live life to the fullest, and do our best to focus on the positive. It’s a full-time job; there’s not much effort left for dealing with the scammers and the well-intentioned but misguided.
So – how do you know what’s true and what’s not? How do you filter out the BS without filtering out joy and hope? There are two ways to screw this up – believing what is untrue, and failing to believe what is true. How do you decide what’s wheat and what’s chaff, when you REALLY want to believe?
I use a version of physicist Carl Sagan’s Universal Baloney Detection Kit. It’s an eight part process for evaluating the likelihood that any claim is true. It’s not foolproof (I’m evidence that there’s always a more skilled fool than you can anticipate), but it works fairly well. Carl’s words are the bullet points – mine are the fluff in between.
- Wherever possible there must be independent confirmation of the “facts.”
Just because one source says something is true doesn’t make it so. INDEPENDENT confirmation by disinterested parties carries weight.
- Encourage substantive debate on the evidence by knowledgeable proponents of all points of view.
The truth tends to emerge when people with knowledge, training, and experience debate the merits of an idea.
- Arguments from authority carry little weight — “authorities” have made mistakes in the past. They will do so again in the future. Perhaps a better way to say it is that in science there are no authorities; at most, there are experts.
Just because a graybeard says it’s so does not make it so. By the same token, being an authority in one area does not make someone knowledgeable about everything else. Be skeptical of self-proclaimed experts, too. Generally, if someone has to tell you they’re an expert, they’re not.
- Spin more than one hypothesis. If there’s something to be explained, think of all the different ways in which it could be explained. Then think of tests by which you might systematically disprove each of the alternatives.
Math and statistics help here, but they’re not necessary. Could there be other explanations for a claim of a miracle cure made by a single individual or organization? Doesn’t it seem reasonable that if PD were cured tomorrow, your neurologist might know about it, and might be almost as happy to tell you as you are to hear?
- Try not to get overly attached to a hypothesis just because it’s yours. It’s only a way station in the pursuit of knowledge. Ask yourself why you like the idea. Compare it fairly with the alternatives. See if you can find reasons for rejecting it. If you don’t, others will.
All of us with PD have a vested interest in believing claims of a cure – be honest with yourself. Repeated dashing of hopes against the rocks of truth gets old mighty fast.
- What is vague and qualitative is open to many explanations.
Demand answers to reasonable, common sense questions.
- If there’s a chain of argument, every link in the chain must work (including the premise) — not just most of them.
If, during the answers to your questions, there’s a “then, a miracle occurs” step, be that much more skeptical.
- Occam’s Razor. This convenient rule-of-thumb urges us, when faced with two hypotheses that explain the data equally well, to choose the simpler.
Is it more likely that an unknown new organization has a revolutionary new cure for Parkinson’s (that also works for Alzheimer’s, heart disease, diabetes, irritable bowel syndrome and bad breath, by the way), that their results have mysteriously not been subject to peer review in scientific journals, and that the treatment is only available outside the US…OR, that someone is just trying to manipulate you, and steal both your hope and your money?
Revolutionary breakthroughs do happen in science and medicine, but honestly, not that often. Don’t fall victim to the snake-oil salesmen; go for a walk instead. Don’t start your days frantically checking the internet for news of a cure; have a nice breakfast and go to Rock Steady Boxing instead. Don’t waste your life with scam artists and people out to steal your joy; live fully in spite of Parkinson’s instead.
And don’t sweat it if you’re unable to tell the difference between BS and truth; you are surrounded by people who care about you, and who can tell. Just ask.